Confessions Of A Gypsy Princess

JINX!

2012-02-02T18:42:00.000-08:00

So, last week when I wrote that I was afraid to jinx myself but what the heck, I was almost a week anaphylaxis free? Well, lo and behold, I ate something Thursday night (I wrote the blog on Wednesday night) that my body didn't like and whammo, I was in anaphylaxis pretty quickly. I did everything wrong too. I left the room, gagging and ran to the loo. I shut the door (thankfully didn't lock it) and proceeded to vomit into the toilet. Pretty sure the only thing keeping my airway open was my vomit forcing it's way UP the airway. Antony was frantically searching for my epi kit downstairs because it had fallen out of my bag and was nowhere to be found. Thankfully, it was found, he came upstairs to the loo and stabbed me with an epi pen...and then...sigh...everything got better. I stopped gagging and choking on my own mucous (well, the mucous slowed down...), felt like a bear had been lifted off my chest and air could go IN. Oh, it was painful not having air go in.

So, we got through that.

My cold left.

And then we had beef stir fry for dinner again tonight. And again, I threw it up, hived up, flushed up and got short of breath, felt like a bear was sitting on my chest. The dog was going crazy around me. It's made with whole ingredients...so what is in it that I'm reacting to? The ginger? Brown sugar? Soy sauce? Garlic? Any of the veggies? The beef? All I know is, it's bloody painful to wretch it back up, so that's the last time I eat it. It's sooooooooooo delicious and is soooooooooo colourful and 'good' for you. SIGH...

The dog didn't settle down until we'd used an epi pen. He's become really attuned to what's going on when I'm reacting. He seriously starts pacing, whining, wagging his tail and whining AT us with this sense of urgency and he jumps up at me, paws at me and whines a lot. He KNOWS. At first, we thought he wanted 'out' or food or water or fuss, but once we'd ruled out these basic needs/wants, and it was obvious that it was something else that was bothering him, we let him tell us what was wrong. He danced around me and paw'd at me and whined. How does he know that I'm short of breath? Once I've had the epi pen, and am feeling better, he settles right down and cuddles up beside me. Won't leave my side.

Anyway, two epi pens since last Thursday. This has to stop.

Ok...One More Crack At It...

2012-01-25T19:04:00.000-08:00

I hate jinxing myself but here I go...I've made it to ONE MORE WEEK ANAPHYLAXIS FREE!!!! It IS Tuesday, right? Oh no, it's Wednesday...it's a week and one day! Ok...a week ago, two days ago was my last one. Last Epi Pen. NOW...to make it to TWO WEEKS.

What I'm not telling you is that I've had this horrendous cold. HA HA...it's ok, I LIKE colds. Because when I get a cold, my mast cells and eosinophils leave me the BLEEP alone...weeeeee hooooo!!!! I get a rest from puking (unless it's stomach flu...) and bone pain (unless it's bad flu but even then, I'll take flu pain ANY day over bone pain) and no hives or flushing or itching....and usually, anaphylaxis and allergic reactions. I can't say the fatigue is any better because, they are comparable. And fever, well, I don't get fever with Masto. or Addisons. And I had a two day fever with this baby. But not even any green boogers. THAT's how great my immune system is. Lucky me.

Which got me to today.

On the tail end of the cold. The fever subsided last night. The cough left. The runny nose ceased up overnight. Sore throat disappeared quickly last night. Everyone else who had this cold was knocked out with it for over a week and needed antibiotics for sinus or lung infections. But no, not me and my SUPER DOOOOOOOPER IMMUNE SYSTEM, no, I only got it for 2 and half days. (Sounds like I'm complaining, doesn't it? I just like the rest from myself...) SO TODAY...I FELT NORMAL. Only slightly congested sinuses (nothing serious) and slightly raspy voice (not enough for good phone sex) so...what does Fiona do when she feels NORMAL?!?!??! She...cleans her house.

WHAT?

Yeah, you heard me.

Cleans. The. House.

I know. Someone shoot me. I get a good day and I waste it CLEANING my house!??!?!?

But it's almost compulsive with me. I think I feel guilty for what I'm not doing most other days and feel like as soon as I can, I MUST do this. I'm looking at it now, and it's not like you can even TELL that I toiled over what I toiled over.

And here's the worst part...I'm now sequestered on the couch because I OVERDID it, and taxed my adrenals and maybe set myself off with some dust and upset my mast cells too? It was cleaning the stairs that did it. It's a tough job that one (to do it properly.) And there was SOOOOO many dust bunnies on them. AHHHHH, it was horrid. We have a combination of wood and carpet on the stairs. Dust bunnies in the corners of the wood and little white dog hairs and lint caught in the carpet slap in the middle of the stairs. I was sweating buckets by the top stair, had the shakes, sneezing and was ready to vomit...oh, and then I did. But didn't stop there, had to make supper, so I started it and realized I was likely going to pass out in the kitchen. So I called for help. Hubby came, took one look at me and helped me to the couch. I proceeded to vomit. I continued to shake. I required help to medicate myself.

THEN, get this...our dog Jack (a mellow Jack Russell...forgive the name, he came with it...) started freaking out. We ruled out the usual suspects. He didn't need to pee. Music coming from the computer wasn't bothering him. He had water and food. He kept jumping up on the couch next to me, and pawing at me. What I wasn't saying to anyone is that my tongue was tingling, my bones were starting to hurt and my chest was feeling a bit tight. Jack kept whining and pawing at me, then started pushing me with his face. He can be a vocal dog. Not yappy but vocal when he is actually communicating and he was trying to say SOMETHING. My husband and the kids were trying to figure it out. So, I finally said "someone grab my kit, I need some epi spray, ventolin and benadryl, please." Bea ran to grab my bag. Jack barked at Bea and wagged his tail at her bringing the kit. I used the meds. He stopped being vocal and was just wagging his tail and looking at us like we were such silly humans. Then he started pushing me with his face and paws again and did so until I was lying down on the couch and he was lying down on top of me. He wanted me to lie down. My family was gobsmacked. "That dog has more sense than you do" my husband laughed. Jack then moved to the end of the couch and tugged at the folded blanket sitting on the back of the couch. I hadn't said anything to anyone, but I was cold. Our usual blanket is in the dryer being washed/dried. HOW did the dog know that I was cold!?!?? I had literally just thought it "whoa, I'm cold..." This dog has seriously blown me away tonight. As I write this, he is curled up on my legs on the spot where they hurt the worse. HOW does he know???

Anyway, I hope I feel good by morning, I have a meeting with a client to discuss a writing job for website copy; and in the afternoon I'm doing some vocal and Self-assertion coaching with a student. I thought for sure I'd still have a cold by tomorrow and would be ok. My immune system is TOO good.

Gut Hell, Anaphylaxis and How To Help My Girl...

2012-01-14T14:17:00.000-08:00

That'll teach me to post on Facebook that I made it to two weeks anaphylactic-FREE. Then no less than 2 hours later, I ate a Ferrero Rocher chocolate and immediately started having a reaction. Started off with severe flushing, including the ears, then hypotension and then my throat started closing in and I started gagging. Mum and Antony called it right away. Epi worked her magic and then all was well.

This on the heels of spending most of the day on Thursday in hospital as well. I had had 5 days of severe, and I mean SEVERE, diarrhoea (including two rather undignified accidents in my clothes) and I can't remember ever sleeping that much. Then I woke up thursday morning to rather nasty puking too, along with what I thought felt like a dehydration headache.

I got through the morning, my kids came home for lunch and I was doubled over in gut pain, wrenching and on the loo (with bowl in hand...hate it when you're dealing with both ends) and had the shakes. HOW I made them lunch is beyond me, but Mothers do all sorts of things through all kinds of situations, so...I did. Anyway, after the girls went back to school, I called my husband at work and said I needed a ride to Emerg. He came and got me.

I expected to spend ages sitting in the waiting room. But when I got to triage, I puked in front of the nurse (a really nice man), explained I had Adrenal Failure and am supposed to come in after 3 days of this sort of madness but I'm on day 5, and I have Mastocytosis and it's ok if he's never heard of it. He asked me a bunch of questions and I realized then WHY I should've had someone with me...I was having trouble answering basic questions. I apologized. He said they were sending me to lab for immediate workup but first to go get registered at the next desk.

I was getting registered at the next desk, having more trouble answering basic questions, but still trying to be helpful. The nurse said to me at one point how pleasant I was for someone who lives with so much serious illness and how refreshing that was. Then she asked me if I'd like a wet cloth to wipe my face (because I was still puking while all this registration was going on, and I kept apologizing for it...) So she gave me a nice damp facecloth. Then she took me to lab personally and got me settled.

I seriously thought, with ALL those people in the waiting room that I would sign in and have to go have a seat out there and wait forever. But no. I waited in the lab for a while and then a nurse came and got me and said the lab could come to my room to take my labs and they were going to get me comfortable. They kept coming in to change my puke bowl for me. They commiserated with my gut hell.

It was pretty obvious that I had a stomach bleed going on. I've had one before. Throwing up brown, coffee grounds/curdled looking coke and gut searing pain in one area...tell tale signs.

My labs came back and the Doctor came in. I had just assumed my Masto. was acting up (even though I don't usually get diarrhoea THAT bad for THAT long....) My labs showed I was badly dehydrated and fighting an infection, so she thought I had one of the nasty tummy bugs running around Winnipeg right now. She saw my puke bowl and said "stomach bleed too, huh?" and examined my tummy. We talked about how I'd one before and what we'd used to treat it. They don't carry Pantaloc at Urgent Care Misericordia Hospital, where I went, because they don't have a Gastro. Doctor on staff, so she decided to bag me with ranitidine instead and maxeran for the vomitting. I haven't had maxeran before. Usually we use Stemetil but she said they haven't used that drug since the 90's. Weird...all the hospitals I've been to have used it. Anyway, we used the maxeran and it worked BUT I reacted to it. I hived and flushed with it...but nothing else. I got two big bags of IV fluids, steroids (hadn't been able to keep my own in) and my headache totally subsided. I slept. They let me go home later that night.

Two days later...I am no longer puking and I have a prescription for Pantaloc to get the stomach bleed under control and my whole gut is feeling less acidic and nasty generally. It still hurts/burns to drink/eat but improving. Because of the anaphylaxis, I am now sequestered and on prednisone for 5 days. I am taking benadryl every 3-4 hours because I'm still flaring if I don't. This will probably go on for a few days. At least I'm not puking...mind you I'm not really eating (it hurts!)

ALL of this on the heels of my 10 year old having a major meltdown, after about 6 weeks of explosive behaviour, night terrors, not wanting to sleep in her bed, stalling at bedtime, irritable after school, being nasty to her sister and then it started with her speaking badly to my husband and me too. We kept speaking to her about it but it just kept going on. Then on Tuesday, it all came to head after she exploded at her sister AGAIN, and when I stepped in she blew up at me (over a painting project we were supposed to be having fun with at home). So I asked her what her problem was and after a bit more pushing, she blurted out that she is terrified of waking up and me being gone or dead; coming home from school and me being gone or dead; of one day the epi pen not working and me dying; that she's angry that I'm sick and that anaphylaxis could kill me and she's sooooooooo scared I'm going to die from it...and she broke down in a heap of wailing little girl and I held her tight, and cried with her and thought "dear God, HOW do I make this better!?!!?!?"

We had a long talk and hugs. I'm not sure if I handled it properly or well, but I handled it the only way I could think to at the time. I told her she had a right to be scared, angry and frustrated because what she lives with creates ALL of those feelings. I thanked her for sharing her feelings. I told her that I am doing and will do everything in my power to be well, stay well and be around for a long time. She interrupted me here and told me that she was angry with me because I DON'T look after myself properly. I take chances. I go places and eat things that can hurt me and I take risks. (Here I was thinking I needed to show my kids that I wasn't afraid to LIVE life...) So, with her sister present too, I asked them both if they both felt the same way about the taking risk thing...and they do. They are both angry with me for not being more careful. So I promised them I will be more careful hereon in. We have agreed that there ARE things that I just don't yet that can hurt me and that we will be understanding of these things that are unknown yet.

I have been sleeping with my 10 year in her room, in her bed, with her the past few nights in order to give her a sense of security. She continues to wake up several times in the night screaming "Momma?!?!? Momma!??!? ARe you there??? MOM!?!?!?" and I gently pat her hair, tell her I am there, it's ok, and tell her she can rest and go back to sleep. And she leans in, snuggles, sniffs me and goes back to sleep. I'm hoping that this kind of nurturing will help her get some good rest and will ease up with some time.

SO imagine Thursday afternoon, after telling me all of this...she goes back to school at lunch time. Comes home after school and I'm not here. One of her greatest fears HAPPENING. My husband said she was really upset. She came home from school and I was at the hospital. She totally melted down. I was happy that she melted down though, instead of bottling it up. He said he just held her and told her that he'd seen me and they were giving me medicines and they were taking good care of me and I was going to be ok and home later. When I got home from the hospital, she ran and hugged me for dear life. That night, she woke up, I'm not kidding, about 11 times. Serious night terrors. All about me dying. So at 4 am, when she was awake, I suggested maybe tomorrow she not go to school.

Yesterday, then, she had a 'personal' day off of school. We snuggled all day on the couch and watched movies. She kept saying to me, all day long, "Mom I love you." I just kept telling her "I'm here. I love you too." She is more relaxed today. She only woke up 4 times last night.

Think I might have to pick up a book on 'attachment' parenting or something. It's going to take some serious love to help this little girl grow up healthy. I mean, I know we can't help this reality we're living with, but there's GOT to be something we can do to help her through it. If anyone has suggestions...I'm all ears.

GIRLY Day

2012-01-05T23:26:00.000-08:00

Today I threw a little caution to the wind, and may well end up paying for it, but it was worth it. I took my daughters to the hair salon to my favourite Hair Goddess, Laura. Hattrix on Pembina Hwy. in Winnipeg is FABULOUS place to go if you have allergies/sensitivities or Mastocytosis because they care. Laura de-latexes her shop and doesn't wear any perfume the day that we come in. She's wonderful. As is her salon-co-Goddess, Michelle. And it doesn't hurt that they are both gorgeous women to boot.

My 10 and 13 year old beauties had their heads massaged, their locks loved and their mops shaped nicely and are ready to go back to school in style. And more importantly, they love the way that they look. They are happy. I caved and went back to red, lopped a few inches off my mop and my husband LOVES my new 'do'...I didn't have time to love myself up yet because after our appointment, we had to rush off to my Doctor's appointment, so I didn't really get a chance to 'settle' in to my new look or play with some make up or anything.

The appointment with my family Doctor was...sobering.

I went in there for refills on my prescriptions for Topomax for migraines, sleeping pills and to discuss perhaps other ways of managing my migraines (coming off Topomax...only been on it since Sept.), the sleeping pills and perhaps some alternatives to handling my incessant nausea and vomiting? My Doctor was pretty blunt with me. "You are a very sick woman, and we are not changing a THING." Not until he talks to my Immunologist anyway. And she's not talking to anyone until I see the Endocrinologist about the Addison's Disease/Adrenal Insufficiency. (Hopefully then, they'll all be speaking to each other???)

Here's the low down I got:

Sleeping Pills: I'm a sick woman. I'm on Disability for a reason. Sleeping pills only work for so long and then no longer work (I've been on them for about 4 years now...) SO...have to take them for 4 days with a 3 day break. Pick my 4 days I want to sleep in a week and pick my 3 days I don't want to sleep. It's no big deal if I'm zombie woman for 3 days or so, apparently....

Topomax: No adding or taking away from the med regime at this time. This med. keeps me from being in bed 2-3 days a week with migraines. The fact that it impairs my cognitive function is no big deal for the world at large at the moment. Apparently I'm not writing any PhD's or Theses at this time, so I'm no great loss to the world at large...my only job right now is to remain anaphylaxis free and out of hospital for a second week in a row. Don't need cognitive function for that, apparently....(excuse me while I wipe the drool up off the side of my face.)

Vomiting/Nausea: I have Gravol and Stemetil in pill and injectable forms for this problem. My Doctor tells me that Stemetil is a powerful antinauseant and SHOULD be enough to ward off the problem. If it isn't, then it's only a problem IF I'm not getting enough nutrition, I'm losing weight and my electrolytes are imbalanced. I give him an example of a typical sort of eating pattern is "I ate an egg and toast this morning; i puked up dinner last night, ate yesterday morning, puked up dinner the night before, puked up lunch and breakfast before that, kept dinner in the night before but just about passed out at the table, puked all day before that and 3 days before that, sipped on Pedialyte but spewed up bits of it intermittently." He asked if I'd lost weight. I said I didn't think so. One of the conundrums that Doctors often find hard to believe with Masto. is that we puke and have diahrea a lot but still manage to gain a lot of weight. We don't understand it. There's some theories that the meds we are on put on a lot of weight or that we are in some sort of starvation mode but...the jury is out. He shook his head and said medicine has virtually no caloric intake so it can't really make you gain weight. Hmm, my ass tells a different story. He asked what I weigh. So I was honest. The last time I stepped on my Mother's scales, it said I was 228lbs. AHHHHH!!!! So he said before I left today I was to be weighed. Whatever. So I got weighed. His scales said I weighed 211lbs. So now I have to be weighed each time I come in. And I had my waist measured. I felt like a bad child.

We also had an interesting little interlude about my Immunlogist and Staff. He asked when I was seeing her. I said I had managed to see her Dec. 23rd. Originally, I had had a November 16th appointment but had suffered anaphylaxis on November 15th and was too sick on the 16th to go and her secretary was less that nice about it. Her 'rebook' time, earliest appointment, was March 7th. Despite numerous call backs for cancellations, NONE were available. So, I said I had called and 'threatened her secretary.' The first words out of his mouth were "don't ever do that to my staff." I was sort of joking when I said it. I mean I didn't REALLY threaten anyone. But then I said, without thinking, "I don't NEED to do that your staff. You have great staff. Your staff are friendly and accommodating and nice. No need to say things like 'I wonder what Dr. Hicks is going to say on March 7th when I finally get to see her and I've been having anaphylaxis once a week since November and I tell her that her secretary wouldn't let me see her?" He then asked me how the appointment went. I felt like a naughty school child.

In fact, I felt like a naughty child the entire appointment.

I shouldn't let THIS be the focus of my entire day because I spent a WONDERFUL evening visiting with a dear Winnipeg friend of mine who has since moved to BC and is now working in a BC Medicinal Marijuana Dispensing Pharmacy. She educated me ALL about how the system works, how the different grades of marijuana are helping people, what they do, how they MIGHT be able to help me (instead of prescription drugs???) and showed me her license. Boy did I learn a lot. I was under the impression that marijuana was ALL THC but it has other properties it in it that are great for pain management, nausea, etc. HOLY DINAH!!!! AND you don't have to smoke it.

We also talked about other healing modalities, so it was a well rounded conversation. And a visit well overdue. I really enjoyed my evening with her.

After reading some other blogs, I'm feeling rather shy about my blog. It's not all that insightful, witty or poignant. I realize this might be in part due to my cognitive impairment but I just don't have it in me to be anything more than I am right now. So this is it. Warts and all.

Having a POTSY Time of It All

2011-12-27T20:49:00.000-08:00

I don’t really give my POTS diagnosis all that much attention.

Today I read this: http://www.bendbulletin.com/apps/pbcs.dll/article?AID=%2F20090531%2FNEWS0107%2F905310408%2F1001%2FNEWS01&nav_category=NEWS01&template=print

It really made me think about HOW chronic illness in children sucks so much more than it does for adults. I mean don’t get me wrong, it sucks royally for adults, but before I got sick, I went to school, traveled, had lovers, published poetry, had art on display, learned foreign languages, studied an instrument, learned about the 5 elements, I loved, I lost, I learned, I lied, I lusted, I rode horses, swam in the sea, rivers and lakes, had flown in a plane, taken a train, a bus, learned to drive, been a Fire Fighter and First Responder, moved out on my own, found Art, got married and had babies. So…I had done a few things by the time I was imprisoned by illness. But children…they are having trouble getting out the learning gate and can’t even complete High School because illness ravishes their ability to learn; to concentrate and retain information. Let alone feeling well enough to exercise their young bodies and to enjoy being young. You can't join a team, go on a date, go to a dance, drive your first car, make out, go to the bar, sleepover at a friends house, go to camp, go to college or university, finish High School or go to Prom if you're too sick to get out of bed or stand up for very long.

I didn’t realize that POTS makes you so sleepy, lethargic, hurt and nauseas too. I thought it was just a blood pressure thing that made you sort of fall down after dinner or if you got up too quickly. I’ve had the pleasure of meeting some other folks online with POTS and I just assumed that their experience with POTS was way more severe than mine, and attributed my possible POTS symptoms to Masto. and/or Addsions symptoms. Trouble is, there is a lot of overlap. So what symptoms belong to what…and what treatment, if any, is best suited to it? Do you use an epi pen for syncoping/fainting/black outs? You do if it’s Masto. and is a drop in Blood Pressure due to anaphylaxis. But do you if it’s POTS related drop in BP and increase in heart rate? Or is it Addisons and do you just need extra steroids?

After I got the diagnosis from my Internist of this condition, I remember coming home to the computer and searching Google frantically for signs of good articles on the subject and only sort of ascertaining what fragmented piece of truth I’ve been carrying around the past while. My Internist, when telling me this is what I had going on, in conjunction with Addison’s Disease and Mastocytosis, that I needed to be careful getting up from the dinner table after eating and to add more salt to my diet. But that was about all she said about how to manage it. She said I had so much going on, I might not even notice the POTS being POTS but it was present. I left there feeling like it was no big deal. She had sort of implied POTS would take a back seat to Masto. and Addisons.

Perhaps she was right.

The not so subtle observation - that is not lost on me, of course is that…POTS, like Addisons and Mastocytosis is incurable. HOW exactly is it I have ended up with THREE incurable conditions/illnesses/diseases at the same time??? How does this kind of chaos happen to a person? More questions than answers, right? Which always brings me back to the children. Thank God I’ve got these conditions instead of some kid having them. If someone had to have them, better me than a child, yes? (What kind of bargaining tool is that, huh?) Or thank the heavens that I got to experience a bit of life before I got saddled with these illnesses that have changed the course of my life; changed my body, changed my soul and changed my very Being?

I do know I’ll be paying a bit more attention to this POTS thing instead of blaming Masto. and Addisons, especially Masto., for just about everything. Time to get a bit more discerning and hypervigilant in my self-observations.

Christmas Day

2011-12-26T18:18:00.000-08:00

Christmas. What a joyeous time of year. Time to get insular with the family unit. I love it. This year marks the first time in over a decade that I get to spend time with my side of the family. We moved back to Winnipeg this past Autumn and up until now my husband’s family have had the monopoly on such festive events (which have been lovely in their own right.)

Needless to say, we were up and atem at 7 am and on the road to Auntie Pam and Uncle Pete’s house at 7am. We got here, after picking up cousins in the city, about 7:45 am and the kids were all still sleeping. Coffee and tea were on, the living room was FILLED with presents and excitement filled the hearts of big and little people.

I, personally, had NO IDEA what was in store for me as I made no Christmas wish list. My Auntie Pam was amazing. She got me (from Santa) a sheepskin full body massive massage mat; a new heat pad (I blew out two this year), and a full body heated blanket throw…for a sick person, is there anything better for sick days??? I don’t think so….

What IS lovely is that I’m having a pretty good day, despite having to use an epi pen during the night. Despite being told that I HAVE to go to hospital when I use an epi pen by my new Immunologist, Dr. Hicks, I didn’t want to ruin Christmas with a trip to hospital and felt better after I used it. This was the 3^rd attempt at sleeping in my bedroom and the third choking reaction I’ve had in my own room/own bed. Not sure what is going on but something is awry in my bedroom. So after the epi pen, and puking a bit, I was wired for sound for a bit and finally fell asleep with Benadryl and sleeping pills on the couch.

I am still covered in the remnants of hives, which are still flaring every 3-4 hours if I don’t keep on top of the Benadryl, from some sort of reaction midweek. I needed an epi pen earlier this week too. I know, I was supposed to go the hospital then too. My legs are covered in little red dots from my scratching the tops of the hives off. I know it’s time for more Benadryl because I start itching like hell. I’m starting to give my friend Scotty a complex. He came over last night and I started scratching….he said “every time I come over you start scratching. Are you allergic to me?” I assured him it wasn’t him. Just had a rough week.

On top of all this, I think I have a bladder infection today. I can’t pee, despite needing to really badly. Frak. Trying to avoid the hospital at all cost though.

Later: had to use another epi pen. To go to hospital or not to go to hospital…on Christmas Day? OMG…no. We caught it early in the reaction, so really I felt a tonne better quite quickly. I KNOW I’m supposed to go in but…ugh, I have prednisone, ranitidine, stemetil and Benadryl here, and most of that in injectable form so I can use that if I’m puking too. There I was at Auntie Pams minding my own business and I just started flushing and hiving for no reason, then the uncontrolled, involuntary, hacking started, then mucus started forming in my throat and I started gagging and uncontrolled coughing, then it felt like a bear was sitting on my chest and my husband called it. It just keeps getting worse if we wait. We’ve done this enough times to know now. My family were very cool about the whole ordeal actually. With 19 people there to celebrate Christmas, it could’ve gotten ugly but I have a supportive family and they were great. They sequestered me to the couch with pillows and blankets and all kept an eye on me. I love my family. They made me stay there for the rest of the day.

You gotta love the unpredictability of Mastocytosis.

I hope your Christmas Day was infinitely less reactive and calmer. Merry Christmas, Happy Holidays and wishing you all the joy, personal peace, love, warmth and prosperity you can handle in the year ahead.

2011-12-11T19:43:00.000-08:00

So, it's the end of another week. It was a pretty good one, overall. My Motherinlaw came to visit and we celebrated Christmas with her early...we pretended last Saturday night was Christmas Eve. and last Sunday morning was Christmas morning, complete with stockings and present opening. I roasted a turkey for dinner with all the trimmings. We watched Christmas movies and put Christmas music on. It was fun.

Only, now, it feels weird that we're doing it all over again on the 24th/25th. LOL. But we'll be going to my Auntie Pam and Uncle Pete's place out in the country, with all my cousins and their babies. It'll be a total hoot. I'm looking forward to it.

Our Manitoba Health cards came. It's official...we're Manitoba residents now.

Had to use an epipen during the week. My Motherinlaw gave it to me. She accidentlly misfired it though and in addition to cutting my leg with it, the needle cut clean through her finger tip and part of her fingernail. We had to watch she didn't get any epinephrine in her body because she has heart issues. Fortunately, she was fine. PHEW... Anyway, she used a second one correctly and the epi worked. My bloodpressure just suddenly dropped...at least that's what we think happened. I couldn't even sit up without feeling like I was going to pass out. I tried at least nine times to sit up, and each time was met with the same sensation...like my heart was 'backwashing', the air was suddenly thick, I was suddenly jello and couldn't hold myself up, and then syncope.

My Motherinlaw is a former nurse and she felt my hands and feet and said they were icy cold and the nails had gone bluish/purple...so in light of all of that and my knowing how these episodes usually go (I usually end up on the ground unconscious because at some point I HAVE to get up to pee or something...) we decided to get it over with. The epi totally did the trick.

So, I've been taking it fairly easy most of the week because it's been a few weeks of epi pens, benadryl and steroids. I've stayed indoors most of this week. I've asked for help. I've made shopping lists instead of trying to do these things myself and then getting icky. I've ordered food in when I've felt too weak or exhausted to cook.

Insomnia has been pretty bad this week though. Not quite sure what to do about that, as I take benadryl and sleeping pills to no avail.

I saw Dr. Glew, my new family Doctor, on Tuesday and we went over all my medication with a fine toothed comb. I think he thought initially that I was overly medicated and that we'd see what we could get rid of but once we went through it all, he realized I needed each and every one of the meds I'm on and why. SIGH...I was sort of hoping to get rid of some too. He DID, however, take me off Tramadol with Acetominophen in it because I was taking quite a lot of it for bone pain and he was worried about how long I'd been (and how much I'd been) using and the effects on my liver. So now I'm on straight Tramadol. Will let you know how it works when I try it.

I'm also relieved that he refilled my Stemetil injection script because that's vital for stopping nausea and my barfing sessions. Otherwise I'm barfing for weeks instead of days or hours.

We also discussed the panic attacks I've been experiencing as of about 3 weeks ago. Luckily, I have Ativan on hand, but hardly ever use. Panic attacks feel like you're having a heart attack, OMG, they are PAINFUL and SCARY!!! It's weird too, they hit when I'm totally relaxed and groovy. Dr. Glew said that he's hardly surprised with all I lived with that this is the case. I have the right medication for them, and it works. So GREAT, I now have THESE going on too. OH JOY.

My friend Drea gave me a beautiful bag for my birthday back in October with a book inside called "10 Days To Self Esteem". It's essentially a workbook, for (as the title suggests) leading you back to your Self and regrowing your Self Esteem. So, today I open it up and start reading it and I take the first two standardized Depression and Anxiety tests. Guess what? I, apparently, suffer with SEVERE DEPRESSION and SEVERE ANXIETY. WHY am I the last person to know these things!?!?!??! I know I shouldn't laugh at this, but I can't help it. It's kinda funny because when she gave me the book I thought to myself "WHY are you giving me THIS book???? My Self Esteem is quite fine, thank you." It turns out...it isn't.

Has everyone else known this about me all this time, and I haven't???

End of The Week

2011-12-02T14:33:00.000-08:00

I woke up this morning feeling like a 90 year old woman. I swear to God, someone beat my body with a massive mallet while I sleeping. My husband looked at me this morning with sympathetic eyes and said "Oh Duck, let me get your heat pad" and motioned for me to get on the couch first thing. Thankfully I didn't have to make any lunches today or get anyone's breakfast.

I take Tramadol for pain now. I won't lie. It's not as effective as Percosets BUT Percs come with their own demons...like addiction, fierce mood swings, nasty temper, foul mouth and give me bad dreams. However, their pain relief is much sweeter and I miss that. Two Tramadols do nothing. Nor do three. If I take four, it takes about two hours for the pain relief to kick in but then it kicks in and works for a while. I don't reccommend that anyone else do this. I'm just saying what gets me through my own personal hell when it's present. Usually though, I just suffer. Oh, and Tramadol costs four times what Percosets cost, which is retarded. HOWEVER, Tramadols don't make me foul-tempered or make my children look at me and ask "Mummy, did you take that medicine that makes you angry?"...'nuff said. NO Percosets.

I still have no appetite. I've thrown up dinner the past two nights when I've MADE myself eat something. What's the point in eating.

I'm back to regular steroid use so I'm guessing the steroid honeymoon and inflammation relief is over. However, because I've been sequestered to the house and not eating or trying anything, I've NOT been reactive or in need of epi pens. YEAH!!!!

On another note, I'm going Christmas shopping with my husband tonight. For the rest of the world that might sound really exciting or like fun. For me though, it means sitting in the car, in Winnipeg, in the cold, directing the next purchases in the next store. I can't go INTO the shops. Not even to shop for my own husband. I have to tell him what I want to get him and he goes in and gets it for himself. There is no longer any element of surprise. You might say...can't you ask your family to help you? But my parents are Jehovah's Witnesses and don't celebrate Christmas or Birthdays; my brothers and sisters live in other countries or are dead; my cousins are busy with their own lives and it's not fair of me to bother them. I don't trust the internet to buy things online, except for Amazon and there's only so many books a person can buy. SO...Christmas and surprising my husband and shopping in general is a real challenge and I find it really hard NOT to get bummed out about it all. I used to pride myself on being a really great gift giver. This has been a hard pill to swallow. Yet another harsh Mastocytosis bit of mayhem.

So, I have my list. Hubby and I will trek out in the car. I will get a Tim Horton's coffee to keep me warm and my Hubby will go in and out of the stores doing my bidding and will, checking my lists, coming out and letting me know what IS and ISN'T available. Somehow, Christmas STILL manages to happen...the magic STILL happens and the smiles still bless the faces of my children come Christmas morning...so we must be doing something right.

2011-12-01T22:22:00.001-08:00

Wednesday - Midweek Throughts, Feelings & Observations

2011-11-30T22:25:00.000-08:00

It was suggested that I blog about my anaphylaxis on the weekend. This would be my FOURTH, count'em, FOURTH, epi pen in November!!!...starting to feel like a pin cushion. Not to mention ALL the injectable benadryl, stemetil, gravol and steroids I've had to use to help with the reactions in and around the epi pens.

I had been feeling not so hot for a few days at the end of last week, as it was. But we had dinner plans with our dear friends Ingrid and Grant. Grant is really proud of his BBQ'ing prowess....the kind that takes HOURS to perfect and you see on those BBQ PIT MASTER tv shows. Not your rinky dinky slap a few burgers on the barby sort of thing you see in beer commercials. NO...this BBQing is SERIOUS business. I knew he'd got the ribs the night before, and made his own rub for them and was being UBER careful about the rub he was putting on them, becasue of my food allergies. His wife was being UBER careful about the side dishes with all my food senstivities and allergies, which is SOOOOOOOOOO amazing and wonderful SO, I wasn't about to cancel dinner on them because I felt a little 'off'.

About an hour before we were due there, my husband said to me "Honey, I really think we should call and bail, you don't look like you're up to this tonight."

"I've been medicating. I'll take more. We're going." I insisted. "I'll put makeup on...that's what it's for. No, we're going." Besides, the last time we'd gone for dinner there, we'd had SUCH a GREAT night over there, I was hoping we'd have another great night...

I never wear foundation or that short of heavy shit on my face, but went and put that on, powdered my face, mascara'd, eye shadowed, lipsticked and a blackshirt (in case I needed needles...white shirts show up the blood if they leak...), whipped up a couple of maple pecan pies to take and we headed out.

On route, I felt like I was going to chirp. We hadn't even't LOOKED at food yet and I was feeling barfy. I pulled the mirror down in the car, and sure enough, I was flushing (that's why I was itchy) and my tongue was a bit fat. Shit...So I got out my needle kits. Normally I don't use needles unless we are in an emergency but we were a few minutes away from arriving at their house and I wanted to make sure the drugs would be effective SOON, so I started drawing the needles up in the car. Antony found a safe place to pull in (Assiniboine Park) and a few needles later, we were ready to rucuss. Holy cow, you'd think I'd be over how much they hurt but I never am...they hurt. They make me wince. Sometimes I cry.

We arrived, all smiles.

And all was well for the first two hours. We ate dinner. I was careful to only eat a small amount of everything so as not to over burden my delicate system. I wanted to gorge. The ribs were AMAZING (we used Bradley's Maple Syrup from Orrvile...THE best Maple Syrup money can buy!!!!) and the baked squash/yam dish with crushed pecans on top, and the coleselaw.

So there we are two hours later, plahing Catan (board game), having coffee, when out of the blue, I start sneezing. I don't normally sneeze more than once but I couldn't stop. This progressed quite quickly to tongue tingling, to lip tingling to scratchy thoat to little hack hack hacks, to not being able to swallow my saliva to uncontrolled coughing to gagging to not being able to breathe.. My airway between the back of my throat and down my wind pipe to my lungs had closed in. My lungs hurt. While I was busy fumbling with my epi spray and TRYING to say "I'm fine; I'm ok" my husband reached for my bag and got an epi pen and just stabbed me.

Within seconds the relief in my throat was AMAZING. It was like the vice around my throat was released and the bear sitting on my chest had been rolled off. And...I could breathe.

At this point, we are supposed to call an ambulance and seek medical attention. IF this kind of thing happens to you, I am supposed to encourage you to do the same thing.

I did not.

We did not.

This is my 79th anaphylactic reaction and epi pen in the past 4 years. There are times when I neeed to go to the hospital and this was not one of them. I gave myself a benadryl injection and a steroid injection, and we waited for any signs of a rebound reaction....which did not happen. HAD there been one, absoltuely, we would have called for an ambulance.

Our friends had never seen anything like it. One minute I was fine. Then next I just wasn't. "Welcome to Mastocytosis" we laughed later. We continued to play Catan and I pretended to drink coffee. It's hard to hold a cup when you have epi shakes. Easy to roll the dice, mind you, with the shakes, but hard to hold a coffee cup.

Now, I am sequestered to the house for 5 days to get over the reaction because my body is fragile and any exposure can put me in hospital. I should be taking prednisone right now but I didn't seek medical attention, so I'm just doubling up on hydrocortisone instead.

I'm hardly eating anything though. I have NO appetite. I'm having to force myself to eat things to avoid hunger headaches, but I just can't bring myself to eat much. I've lost my love to eat food. I'm trying to be creative in kitchen for my family, and in the hopes that the deliciousness will inspire me to eat, but I usually just end up puking it up anyway, so WHAT's the point!?!?!? I'm sooooooooooooooo sick of puking.

Guess I can talk to Dr. GLew, my new family Doctor, when I see him on MOnday. He wants to go over the MASSIVE list of medications that I'm on right now and talk about what's what and why. I'll put that list up in a blogpost in the next day or so, so you can see how monstrous and insane it is. Not sure if he'll be able to help with puking thing because it's probably just Masto. or Addison's Disease but...holy Dinah, I barf a LOT. Doesn't even phase my family anymore, they are so used to it.

What I HAVE had the past two days, probably from ALL the steroids I've taken over the weekend, is feeling good. I know it's probably a false sense of wellness, from the steroids but I'll take it. It's nice NOT to be in so much pain you just want to crawl into a hole and die. It's nice to clean your house, visit with people and actually be able to FOCUS on what they are saying because you aren't in agony or needing to run to the washroom because soup is about to explode out of your butthole, or vomit out of your mouth. SO, the Christmas tree went up (early, I know...but my Motherinlaw is visiting for an early Christmas this week, from Ontario!!!) and I've been alert and present and feeling pretty normal. Hope it continues (fat chance...lol.)

Anyway, hopefully we use 1 or less epi pens for December.

Hope you're hanging in there, life is good and that you're being patient with yourself,
Fiona

Long Time No Write

2011-11-23T14:18:00.000-08:00

It's been a LONG time since I blogged...like just over a year. It's not that I haven't had anything to say. It's just that certain people were telling me what TO SAY and what I SHOULD and SHOULDN'T say on this space and I found it difficult to have my own voice with that kind of malarky going on. Hopefully, those voices have quieted down now and this space can be what it is intended to be...a place to work out the wranglings of learning to live with a creative Self inside an incurable illness and the changes that this brings to life.

What IS different between this time last year and now is that I've had a full year of rest. This time last year, I was diagnosed with Addison's Disease on top of Mastocytosis. For those of us unfamilair with Addison's Disease, it's basically when your adrenal glands (your 'fight or flight' glands) stop working. They stop producing Cortisol, a much needed hormone that governs inflammation response in the body so that it stops your body's joints from hurting, for example. Cortisol also plays a pivotol role in things like vomitting too because when my cortisol levels are too low I puke a lot. A LOT. It bites. It must govern body temperature too because since I started on Cortisol I've not been as cold as I used to be. This time last year I was driving my husband mental by turning the heat up to 22 degrees at the farmhouse and STILL being cold. Thankfully, those days are over. I can now keep mostly warm. As long as I keep a steady stream of Cortisol pumping through this body.

I don't like the idea of being steroid dependent the rest of my life. Quite frankly, it does my head in. As if I don't take enough medication for Mastocytosis. My Immunologist, who had wanted to put me on steroids for some time anyway, thought the Addison's diagnosis was a stroke of sheer brilliance. To his mind, being on steroids helps with the Masto. situation too. So I take 20 mgs of Cortisol in the mornings and 10 mgs in the afternoon. Unless I am under some duress or stress, then I have been told by my Internist, to double that dose.

Since the last time I blogged on here, we have also moved...to Winnipeg, the center of Canada. The climate is MUCH dryer than that of Ontario and is proving to be much more hospitable for my mast cells. I've heard this same sort of report from people in Arizona, only their reports are warmer. I wish I could say that I've been without reactions or anaphylaxis since we've moved here, but that simply is not the case. But my joints don't hurt with nearly as much fiercity. They still hurt, badly, but less so. My sinuses aren't so runny or clogged (either) and I need less Reactine. Mind you, I've had more nosebleeds, as have my children. Welcome to a dryer climate.

One of the challenges I face currently is putting together a health care team of the the calibre that I had in Ontario. I had a brilliant Family Doctor in Parry Sound; a great Immunologist in Toronto and a fabulous Internist in Parry Sound. Until this morning, I had had awful luck with Doctors in Manitoba...the only Doctor I had gotten to see being uninterested in Mastocytosis and unwilling to learn about it and not pretending about it either. However, this morning, that light shifted and I found a new family Doctor willing to take on my healthcare challenges AND willing to look after my children too AND he was nice. He thinks I need an Immunologist ASAP and an Endocrinologist. I am to get some bloodwork done asap and go back and see him next week to discuss my medication and actual needs with him without my children present. I got a great vibe from him. He didn't pretend to know about Mastocytosis (but knows about Addisons!) but is willing to learn. And more importantly, he didn't treat me like a crazy woman.

We've moved into a smaller, easier to manage home in Winnipeg. I've had a tough time adjusting to this smaller home but my husband's logic and reason has won me over...as has his space saving solutions and this cozy little pad of ours. I've had to admit that he is right...THIS WAS THE RIGHT ANSWER. I can no longer manage to clean a big house or look after one. This is just the right size. I am no longer overwhelmed by what I can't accomplish but feel good by what I can get done because it doesn't overburden me AND we are all comfortable in this space. We've had to downsize a LOT of things and stuff in our lives to get here, but it was worth the effort. Our space is no longer overwhelmed when I'm too sick to get out of bed to deal with it. And when I'm well enought to deal with it, it's great too! There's no more feeling like a total failure when I'm too sick to deal with it all. We just wait for a better day and embrace it when it happens. :) I think we've finally figured out how to be graceful under pressure.

2011-11-22T12:45:00.001-08:00

November is Novel Writing Month!

2010-10-19T14:48:00.000-07:00

My husband sent me the link for this: http://www.nanowrimo.org/eng/whatisnano so, I've decided, after much thought today, to take part in it. I will get an outline done in the next week or so, and then commit to getting my first novel DONE.

I also need to cut the nails on my left hand so I can play guitar. They got in the way yesterday.

Today was a 'sick' day, so I slept most of the day...so haven't got any new art or ideas to share. I woke up feeling really worthless and useless and self-pitying at about 3pm, but thankfully no longer in migraine hell. I think this must be par for the course with illness. I get frustrated by my limitations. I miss driving. I REALLY miss driving. I can't handle this isolation and loneliness. I can literally go all week without seeing or talking to another soul all day. I wait for my husband and children to get home from their days at school and work and am met with "not much"; "I don't know" or "it was ok" when I ask about their days. Doesn't really make for meaningful communication, ya know? I can't do this much longer. I can't live here much longer. I'm going mental. This gorgeous place is for seniors, retiree's, vacationers and people that drive.

New Art

2010-09-24T11:58:00.000-07:00

This is Roy's bike. It's a Kawasaki 1100. This picture is done in pencil, graphite and ink. I'm finding the combination of the three media effective.

I'm currently working on some varied art for cards. These cards will be available for sale through both Canadian (one set) and USA (another set) Mastocytosis Societies. They will be blank greeting cards to support Mastocytosis research and a search for a cure. Will post these when I'm done.

I went to my first Live Figure Drawing class last night. Nude model. Really great experience. I got loads of positive feedback on my 'studies' (I'm not to call them 'doodles' anymore...) Some are 30 second; some 10 minute and some 20 minute studies in still live. I will continue to honour, work with and grow the creativity that I've been blessed with. I will let the 'Divine' in me, emerge.

Love Is In The Air, Again

2010-09-07T14:28:00.000-07:00

This past weekend I was witness to, and discreetly (or mostly discreetly) taking photo's of a blessed event. It was SUCH a special time. My dear friend E.'s parents divorced after a couple of decades of marriage, spent some time in their separate lives lamenting and missing one another, and then...they got back together. This past weekend they got married AGAIN.

It was EVERYTHING a wedding should be: intimate, loving, precious, warm, fuzzy, funny and relaxed. They shared nuptials with a grandson as the Best Man; a son-in-law giving the bride away; a daughter as Maid of Honour and two very special young ladies as Flower Girls. And me, flitting around taking photo's, while my oldest daughter played 'cued' music at the right moment. And, one Officiating wedding lady.

What was incredible was the incredible downpour of rain we've had for over 5 days, and that there was one sparse, small, window of sunshine and blue skies...during the service, beside the naturally occurring waterfall at the cottage. It was like God or the Universe was blessing their union. Magical.

When I have permission, I will share some photo's that I took. I gotta say, with that much love in the air, it was difficult to take a bad photo.

The nuptials made me want to say and witness my love for my husband all over again.

The reception? Great food, great wine (for those that can) and GREAT company. I had a blast. Thank you for letting me be a special part of it, and extra special thanks to Erin for helping me with my medications so that I could keep up the guise of being 'normal' for the event. It's special moments like this that make life the celebration that it should be.

Thanks. xoxo

Low Histamine Diet

2010-08-15T16:36:00.000-07:00

People often ask about the dietary restrictions I live with; that folks with Mastocytosis live with. I've borrowed this page from a good source (cited.) I use this diet plus the latex-crossover foods that must be avoided, as I have a severe latex allergy. Have used this diet with some success. I'm human.

http://www.urticaria.thunderworksinc.com/pages/lowhistamine.htm

Histamine-Restricted Diet

Information on this page comes from Dietary Management of Food Allergies & Intolerances: A Comprehensive Guide, by Janice Vickerstoff Joneja. 1998. J. A. Hall Publications.

Food Sources of Histamine

Histamine occurs in food as a result of microbial enzymes converting the amino acid histidine (present in all proteins) to histamine. All foods subjected to microbial fermentation in the manufacturing process contain histamine. Included in this category are cheeses, fermented soy products, other fermented foods (e.g. sauerkraut), alcoholic beverages, and vinegars.
Foods exposed to microbial contamination also contain histamine in levels determined by the extent and rate of action of the microbes. Histamine levels reach a reactive level long before any signs of spoilage occur in the food. This characteristic has important implications in fin fish, where bacteria in the gut are particularly active in converting histidine to histamine. The longer the fish remains ungutted, the higher the levels of histamine in the flesh.
Some foods such as eggplant and spinach contain high levels of histamine naturally. In addition, a number of food additives such as azo dyes and preservatives mediate the release of histamine.
Some of these chemicals such as benzoates occur naturally in foods, especially fruits, and may have the same effect as the food additive in releasing histamine.
The histamine restricted diet excludes all foods known to contain high levels of histamine or to contain chemicals that can promote the physiological release of histamine.
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From the Urticaria Chapter

The foods most commonly reported to induce urticaria are shellfish, fish, egg, nuts, chocolate, berries, tomatoes, cheese, milk, and wheat.
Foods reported to release histamine directly from mast cells are uncooked egg whites, shellfish, strawberries, tomatoes, fish, chocolate, pineapple and alcohol.
Foods containing histamine—Aged protein containing foods and fermented foods commonly have increased histamine levels.
Foods reported to be high in histamine are fermented cheeses (e.g. Camembert, Brie, Gruyere, Cheddar, Roquefort, Parmesan), brewer's yeast, shellfish, many fin fish, canned fish, tomato, spinach, red wine (especially Chianti), beer, unpasteurized milk (e.g., cow, goat or human milk), chicken, dry pork sausage, beef sausage, ham, chocolate, fermented soy products, and all fermented vegetables, such as sauerkraut.
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Allowed/Restricted Foods

This diet excludes all:

foods with naturally high levels of histamine
fermented food
artificial food coloring, especially tartrazine
Benzoates including food sources of benzoates, benzoic acid and sodium benzoate
Butylated hydroxyanisole (BHA) and butylated hydoxytoluene (BHT)

Type of Food	Foods Allowed	Foods Restricted
Milk and dairy	Plain milk Ricotta cheese	All prepared dairy products made with restricted ingredients All cheese All yogurt Buttermilk
Breads and cereals	Any pure unbleached grain or flour Any plain fresh bread, buns, biscuits, pizza dough with allowed ingredients Homemade or purchased baked cookies, pies etc made with allowed ingredients	Products made with: Anise Artificial colors Artificial flavors Bleached flour Cheese Chocolate Cinnamon Cloves Cocoa Margarine Preservatives Restricted fruits Some jams, jellies Any food made with or cooked in oils with hydrolyzed lecithin, BHA, BHT Commercial pie, pastry, and fillings Baking mixes Dry dessert mixes
	Breakfast cereals made with allowed foods, including: All plain grains Plain oats and oatmeal Plain cream of wheat Puffed rice and wheat Plain crackers with allowed ingredients: Grissol Melba toast RyVita Rye Krisp Wasa light or golden crackers	All others
	Plain pasta	All packaged rice and pasta meals
Vegetables	All pure fresh and frozen vegetables and juices except those listed	Eggplant Pumpkin Sauerkraut Spinach Tomato and all tomato products All vegetables prepared with restricted ingredients
Fruits	Apple Banana Cantaloupe (rock melon) Figs Grapefruit Grapes Honeydew Kiwi Lemon Lime Mango Pear Rhubarb Watermelon Fruit dishes made with allowed ingredients	Apricot Cherry Cranberry Currant Date Loganberry Nectarine Orange Papaya (pawpaw) Peach Pineapple Prunes Plums Raisins Raspberries Strawberries Fruit dishes, jams, juices made with restricted ingredients
Meat, poultry and fish	All pure, freshly cooked meat or poultry	All fish and shellfish All processed meats All leftover cooked meats
Eggs	All plain, cooked egg	All prepared with restricted ingredients Raw egg white (as in some eggnog, hollandaise sauce, milkshake)
Legumes	All plain legumes except those listed opposite Pure peanut butter	Soy beans Red beans
Nuts and seeds	All plain nuts and seeds	All with restricted ingredients
Fats and oils	Pure butter Pure vegetable oil Homemade salad dressings with allowed ingredients Lard and meat drippings Homemade gravies	All fats and oils with color and/or preservatives Hydrolyzed lecithin Margarine Prepared salad dressings with restricted ingredients Prepared gravies
Spices and herbs	All fresh, frozen or dried herbs and spices except those listed opposite	Anise Cinnamon Cloves Curry powder Hot paprika Nutmeg Seasoning packets with restricted ingredients Foods labeled "with spices"
Sweeteners	Sugar Honey Molasses Maple syrup Corn syrup Icing sugar Pure jams, jellies, marmalades, conserves made with allowed ingredients Plain artificial sweeteners Homemade sweets with allowed ingredients	Flavored syrups Prepared desert fillings Prepared icings, frostings Spreads with restricted ingredients Cake decorations Confectionary Commercial candies
Miscellaneous	Baking powder Baking soda Cream of tartar Plain gelatin Homemade relishes with allowed ingredients	All chocolate and cocoa Flavored gelatin Mincemeat Prepared relishes and olives Soy sauce Miso Commercial ketchup Gherkin pickles Most commercial salad dressing
Beverages	Plain milk Pure juices of allowed fruits and vegetables Plain and carbonated mineral water Coffee Alcohol: plain vodka, gin, white rum	Flavored milks Fruit juices and cocktails made with restricted ingredients All other carbonated drinks All tea All drinks with "flavor" or "spices" Beer Wine Cider All other alcoholic beverages

Histamine Restricted Diet for Control of Urticaria/Angioedema

Do not eat the following food during the 4 week trial elimination period.

Meat/Poultry/Fish

All seafood including shellfish or fin fish, fresh, frozen, smoked or canned
Egg (a small quantity in a baked product such as pancakes, muffins, cakes is usually tolerated)
Processed, smoked and fermented meats such as luncheon meat, sausage, weiner, bologna, salami, pepperoni
Leftover meat: eat freshly cooked meat ONLY (side note from Jackie—After meat is cooked, the histamine levels increase due to microbial action as the meat sits.)

Milk and Milk Products

All fermented milk products, including cheese (any milk product that is curdled rather than fermented is allowed, such as cottage cheese, ricotta cheese and panir)
Cheese products such as processed cheese, cheese slices, cheese spreads
Yogurt, buttermilk, kefir

Fruits and Vegetables

Orange
Grapefruit
Lemon
Lime
Cherries
Strawberries
Raspberries
Cranberries
Loganberries
Apricot
Pineapple
Dates
Raisins
Prunes
Currants
Relishes
Pickles
Spinach
Tomatoes
Ketchup
Tomato sauces

Food Additives

Tartrazine and other artificial food colors
Preservatives, esp. benzoates, sulfites and BHA, BHT

Note: Many medications and vitamin pills contain these additives, especially colors. Ask the pharmacist to recommend additive-free supplements and medications.

Seasonings

Cinnamon
Chili powder
Cloves
Anise
Nutmeg
Curry powder
Hot paprika (cayenne)

Miscellaneous

Fermented soy products
Fermented food
Tea—herbal or regular
Chocolate, cocoa, and cola drinks
Alcohol
Vinegar and foods containing vinegar such as pickles, relishes, ketchup, and prepared mustard

Art Attack

2010-07-27T04:27:00.000-07:00

So, you can see I've posted two new pictures that have recently begun and come to fruition. No small feat for someone with blocked lower chakra's...lol. Feels GREAT to have completed these, not just conceptualized them or thought about them or dreamed about them. AND, they will be hanging this coming weekend, July 31st, at The Quality Inn in Parry Sound as part of the "new and emerging" artist's program with Seguin Arts Council.

I'd like to thank my friend Barb for encouraging me and kicking my ass to get my application in and nudging me towards committing to this event. Because I had an event to get to, I had a time frame to complete these babies in...and did. For once, I'm happy with them. Yes, I'm a bit rusty, but I did it.

I'd like to thank my Life Coach, David, for encouraging me to explore this side of my creativity, for his guidance and the way that our chats move me to action.

I'd like to thank my brother Simon and my husband Antony for buying me art supplies over the past decade HOPING I would get off my ass and use them. I am.

And I'd like to thank the Universe/God for being my co-Creator.

2010-07-27T04:16:00.001-07:00

"Chakrafishal"

New Art

2010-07-27T04:15:00.000-07:00

"Forgotten"

Creative Juices

2010-06-27T19:47:00.000-07:00

Been getting the ole creative juices flowing. Mostly because I committed to take part in an upcoming Art Show in Parry Sound sometime in July/August as part of their "New & Emerging Artists Program". My friend Barb, who began watercolouring painting around 40 years of age, who is now a decade wiser and showing/selling her stuff regularly, has encouraged me to participate. "WHAT!?!??!?!" my inner critic screams, "YOU CAN'T do art!!!!" But as I'm learning...we have to ignore those nasty inner little voices. So I'll post something when it's done.

My good friend Jay showed up at the cottage this weekend, with an energy that was totally different from any I'd seen lately in him. It was really nice to see. He's decided to take better care of himself. And you could tell. So I asked what was different. He told me that he's joined his friend Andy, who's lost about 80 lbs, in making some different lifestyle choices for himself. I wanted to know more.

Jay very patiently walked me through the sorts of foods you could have; the supplements that he's taking (all store bought), some new food products that I had no idea existed and les voila...I tried black coffee tonight with a bit of Vanilla flavoured Splenda and TA DAH! I'm transformed into a black coffee drinker. For a bit of decadence, add Silk's soy coffee creamer and you have what tastes a LOT like a French Vanilla cappucino...and let's you feel like you're being ever so naughty.

The supplements are all things that I've been doing my own research about and dabbling in, and not quite getting the right combination. So...I'm giving it a go. I need to become physically smaller so that I can bend into those yoga poses that my flub is interfering with. NOT ok. I'll keep you posted. I have taken my physical measurements and am appalled at my size. Not because I'm mean to myself but because it's unhealthy. So, I'm hoping THIS will be the right combination, alongside exercise.

Exercise too...this is newish for me. I joined some other lovely ladies I know in doing "Boot Camp" workouts. I've been twice now and LOVED it. I'm pretty crap at it, but I love it. I just want to get stronger and better. Our wonderful instructor is just that...wonderful. Kim (mother of twins...AMAZING!) coaches us in lunges, squats, jumps, weight & strength training and some serious ab work. I'm hoping the addition of this, with my treadmill workouts will improve my physical state. So far so good. I'm down a pant size. I believe weight loss will occur if I just keep at this. Alongside some food adjustments and the addition of supplements.

I want to be strong.

Strong and creative...think that's a fair amount of personal growth in just a few weeks.

Here...this is an etching I did for my Mum & Auntie Pam's new kennels, they are opening in Winnipeg. Really proud of both of them, and their husbands, so just wanted to give them a small gift of love. There is a massive part of myself that wants to explain the piece and whether or not we can even call it a 'piece' but I'm refraining. For tonight, my inner critic can bugger off.

Namaste.

2010-05-25T07:23:00.000-07:00

Dealing with chronic illness, as I do, is (I'm discovering) a matter of perspective. HOW I think about myself, my body, this pain, whatever is malfunctioning affects how 'heavy' or how I can handle whatever it is that is present. I've spent an inordinate amount of time this past 2 years trying to convince myself I don't have some crazy Mast Cell Disease; that I'm not going to go into anaphylaxis at the drop of a hat, that I won't be riddled with pain, hives, flushing or throwing my guts up for days on end and I a NOT going to the hospital...it hadn't occurred to me, until my Life Coach pointed it out, that this energy I expend on trying to convince myself of things that are other than they are, is futile. Accepting that I have this nutty incurable disease does NOT mean that I sink into a pit of self pity and stay there, drowning in pain, sorrow and self-pity. On the contrary, accepting it means that I have a platform from which to bounce into the new 'normal' that I am currently experiencing and living. And for those of you that know me, you know that this means I will be spending time and energy trying to figure out how to live with this illness in productive, positive and passionate ways. I can't believe it's taken me almost 2 years to sort this out. But such is the way of life learning...

I was sure that IF I just told myself that I didn't have this illness that it would just go away. There are still some people (lesser now...) in my life that think if I just do this, it'll all go away. Well, I've done that. And it didn't work. I also quit my medications a few weeks ago, for just over a month because I wasn't sure they were actually helping me; because I didn't want to have to take allopathic medications to keep this body close to homeostasis; because I didn't want to rely on western prescription medications to stay alive; because I was hoping that if I just tried hard enough, I could make this go away. It didn't end well. My drugless experience was ok for the first 3 days or so. I felt freed of the prescription shackles and like I was in control of my life, for the first time in ages. However, then I started hiving just from walking outside or taking a shower or the slightest emotional strain; then it just got bad. I had a run in with some latex that while I managed on my own with epi spray and the slew of drugs I have for said such emergencies, wasn't (it turned out) enough. I continued to rebound for days, which then culminated in my blacking out, several times, over a few days. The gastrointestinal crap had begun in the midst of all of this, but took a back seat to managing breathing and blood pressure levels. However, after 5 days of continual barfing and gut pain, I ended up in hospital, severely dehydrated, asthma-like attack and hypothermic. I still ended up needing injections of epinephrine, benadryl, stemetil, and IV solutions of solu medrol (steroid), etc. I got severely told off for coming off my meds, and getting back on them was, after getting stablized, the first priority. The telling off was because...it almost killed me.

I'll admit, I felt utterly defeated. Not only did I have to go back on the medications but I had been black out FREE since July 2009...and now I had to start the clock again. It's a whole year again until I can even contemplate applying to drive again. My husband, gently and sympathetically, told me this past weekend (during our alone-time, we celebrated 10 years of marriage) that I might just want to let go of that dream to drive again and IF it comes to be that I am well enough to do so again, then we'll deal with it. He's frightened of me living in this cycle of striving for something possibly unattainable and being disappointed and feeling defeated.

It's those feelings of defeatedness, wishing for otherness and hoping this'll all go away that is unhealthy. It causes a person to spend so much time wishing for otherness that they aren't actually 'present' in the life that Is. My yoga practice has helped me to realize that this 'presence' is vital to being healthy, on all levels. Wishing for the old life that I had (that I didn't enjoy when I had it) is absurd. Not to mention pointless. So, when my Life Coach this past week, said to me, "Why can't you just ACCEPT that you've been given this illness as a way of moving into the life that you're supposed to inhabit? Why do you keep fighting what IS?" that I realized I've been going about this all ass-backwards. Accepting the diagnosis of Mast Cell Disease/Systemic Mastocytosis and Idiopathic Anaphylaxis doesn't need to be a noose around my neck or a ball and chain tied to my ankles. It's not the end of the road. It's the beginning. THIS disease, the near death experiences I've had with it, and the day to day chronic pain & discomfort I've experienced are for some reason. And, I have a responsibility to handle it. So I'm going to trust the Universe/God/Whatever you like to call it, has given this to me for a reason. And, I'm going to keep learning. Who knows, perhaps one day I'll be able to help others...but in the meantime, I'm going to keep learning.

This past winter, I took a course in Level 1 Reiki. There are lots of cynical folks out there that pa-shaw the whole notion of energy and energy healing. I'll admit that I went into this particular class with a sidewards eye, looking for the loophole and the part that didn't work. I was in for a shock. It's not until a Reiki practitioner puts their hands on, or near, you that you realize the abundance of energy constantly surging around yourself, in yourself, or others and it is nothing short of massive & magnificent...at least, this was my particular experience. The real beauty is in being able to share this gift with others, as well as yourself.

I'm no new comer to Energy work though. I think I must've read just about every manual, book and treatise on the subject. I'm obviously drawn to the subject in much the same way I am drawn to Anatomy/Physiology, Meridians, Psychology, Biochemistry, and Religious/Spiritual texts. However, it was a REAL eye and soul-opener to be actively involved in the practice of these energies. It blew my mind. Still does. Book knowledge is one thing; practical work and sharing is another. Even my cynical husband seeks out my hands now. "Honey, would you mind putting your hands on me and doing that Reiki thing?" he'll ask. A wry smile crosses my lips. He's experienced the warmth, the unconditional love and the gift that each of us possess. It feels good to share.

There are some Reiki practitioners that use crystals as part or in conjunction to their Reiki practice. I don't know enough about the subject to comment on the validity or success of it. So, this Sunday, I will be taking an introductory course in the subject with Ann Scott and her partner Craig. I don't think it is without reason that my husband decided, this past Sunday, to take us south via old Highway 69 instead of the faster open road of the 4 lane Highway 400. A "moving sale" sign pulled us. We turned the car around to go it (something we don't normally do...we'd normally keep going...) and that's where we met Ann and Craig. The potential for this to be just a regular 'moving sale' experience was there, but a little bit of discussion ensued and lo and behold, it turns out that Ann is my Reiki Master's Master. Then the subject of the class this coming Sunday came up. It's a great price because Craig is gifting his time for this. It's usually taught over 2 days, but will be compressed into one. If anyone local would like to go, they need to know by Wednesday evening so that they can copy enough manuals for everyone. Otherwise, you'll have to copy the manual afterwards from someone (like me) who's going. This sort of class would normally be about $490 for the two days. It's only $25.00.

So, serendiptious? Hmm, from what I'm learning, ALL things happen for reasons. As my Life Coach continually reinforces for me, "what better way to become a practiced Healer than to have walked through the fire of disease and illness, to emerge wiser & able to pass on your knowledge..." I have sooooooooooooooo much to learn. I think it's pretty obvious that the Universe/God is looking after me in my quest for this knowledge and experience. On days when I can't get out of bed or off the couch, it's difficult to 'see' that, but I have to believe that this has all happened for reasons beyond the scope of my intelligence.

So, the first thing I want to be upon waking every morning is grateful. And I am. A path is unfolding. New and wonderful people are coming into my life. Old and unsupportive people are falling away. And those doors keep opening. Such is the way when one is on a journey.

Pain

2010-03-17T23:13:00.000-07:00

Please read my friend Dawn's recent blog about Pain: http://thebreakoffdawn.blogspot.com/2010/03/unpleasant-feeling.html

It's a great look at Pain...and not just Masto pain. Dawn speaks about her courageous sister Lori, who battles Fybromyalgia. I have a special person in my life who has it too, and she's is filled with the same kind of strength, personal resolve and stubborness to not let 'it' win. So Dawn's post just about sums it up. Eloquently, succinctly and yet remains filled with hope. Hope and determination are two qualities that living with chronic illnesses solicit in us. Sure, there is a certain amount of personal wallowing and 'whoa is me' we have to wade through to get to Hope and Determination...but it's doable.

The strength that we manage to summon, when there are truly truly dark days when the pain is so bad that you just wanna curl and up and die, is blessing and a stark reminder that we ARE capable of the good fight even when we're down and out. However, the love and the joys/blessings that good family members and friends bring to our lives is part of an undeniable and much needed support system that helps us remember that in our fraility today, we CAN keep going...and that we are not alone in our fight. So, Lori, thank you for being there for Dawn. (in no particular order....) Mum, Dad, Auntie Pam and Uncle Pete, Mimi, Ant, Dorrie & Al, Simon, Nicole, Cousin Lauren, thanks for being there for me; Dawn thanks for being there for me; (in no particular order....) Julie, Celeste, Mark, Tom, Kevin, Allie, Emma, Cheryl, Carrie, Lesley, Leslie, Drea, Barb, Lori (I have my own special Lori), Tim, David, Sherry, Grant, Dan, Heather, Chrissy & Kadence, Jane, and that incredible group of Masto Sisters I've met on Facebook (sorry, it's 2 am...my brain is about to turn to mush....) THANK YOU.

I'd love to tell Masto, that naughty little boy, that he needs to go stand in the corner and leave the rest of us alone. However, the pain and insomnia are too strong tonight, so I'm awake on here and am reading biochemistry books in the hopes that I will konk out soon. Please read Dawn's post. It's a good one, and one I'm sure we can all identify with. Pain bites. Chronic Pain is...brutal.

Hoarders

2010-02-01T15:34:00.000-08:00

Feeling a wee bit better than yesterday's glumdom. Roller coaster, eh? I find being productive helpful. That is only doable on days when my body is co operating, which thankfully, it's mostly been doing lately. SO, my mantra is 'enjoy it while you've got it'....

It feels like a big accomplishment when you get another coat of paint on a room, or sort a cupboard or box on the porch out. Now I have 3 boxes of stuff to go to GoodWill and need to convince my husband that we need to put it in the car and he needs to drop it off. We watched "Hoarders" last night on tv. It's UNBELIEVABLE what messes people will live in and the crap that they acquire...oh, and then I look at the corner of the family room, which is a cupboard full of computer components and projects my hubby intends to do one day; a couple of boxes I intend to sort out one day and then....there's the filing cabinet. I emptied it just before Xmas, and got rid of another filing cabinet that I had felt the need to start and fill at some point . Sorting it felt good BUT there's still work to be done on it. Got the living room, kitchen and the movies all sorted (and purged) recently too. THAT felt good. It's like you almost can't breathe when you acquire THIS much stuff.

What struck me about the people on that tv show last night was their reluctance to let go of 'stuff' and the psychological warfare going on inside them as 'organizer's came in and tried to help them purge it all. I said out loud, more than once, "MY GOD, HOW do people live like that..." and then looked outside at the porch. My husband was quiet through the show. I reflected on my years of doing exactly what these women on the show were doing...filling the void in their lives with 'stuff'. I spend a LOT of time at home now, and am having to live IN this home more so than ever before (working full time, I found I was coming home, cooking, doing laundry, getting the kids sorted, wipe the shower down while I was having a shower, and collapsing into bed...doing the same all over again the next day; THEN going out on the weekends to avoid being IN this space....) So it was a few scant months ago that I realized how much I hated being in it. It's not the house. It's not the farm. It's not my husband. It's not the kids. I was suffocating beneath ALL this crap we have acquired. The differences might not be noticeable to outsiders, but it's getting there and feeling better to me. I have purged (and asked my hubby and Muminlaw and neighbour to drop off to GoodWill loads of stuff, and have thrown away loads more.) MUCH more work to be done. And, I can breathe in my kitchen, living room, bedrooms, and family room now.

"What do you think?" I asked near the end. "I think they're ill..." he trailed off. "Ya know," I added, trying to be tactful, "our driving shed and porches look like that, eh?" He then attempted to redirect the conversation, as he is oft want to do when we are discussing him. "Your mother shops like that woman acquires crap," he said abrasively. "Yes she does," I replied, "nice diversion tactic...." He laughed. "We seriously have to clean that driving shed out come spring. I'm working on the porch right now..." I finished. He agreed.

"Hoarders" is a great show to come to some well-needed self-realization. Extreme, it might be, but it's easy for us to sink into 'picking up bargains' at garage sales or 'intending to give a project a little TLC so that you can turn around and sell it or use it'. But, like we saw on that show last night, it doesn't take too long (heck years fly by once you have kids...) for that stuff and those intentions to pile up to unfathomable messes and clutter.

This is where it's good to take a page out of my Inlaw's book. My motherinlaw doesn't bring anything IN to the house without something going OUT. I took offense to this at first, as I watched sweaters we'd given to her at Xmas going to GoodWill/Salvation Army (my own insecurity rising..."omg, she hated it...") Her sorting out every few weeks IS sagely and IS the right thing to do...otherwise you end up with boxes and boxes and boxes of crap that you intend to wear, or give away or deal with later, but never do. My Muminlaw strikes while the iron is hot. I've come to see the wisdom in this. We can't keep EVERYTHING. It's just STUFF. And I think I might have mentioned before that my motherinlaw keeps a pretty tight ship at her end. Her approach to 'stuff' works. So, while I might not have grown up learning this, I ain't too old to learn. My fatherinlaw too...that man is amazing. He starts a project and finishes it. He sees what needs doing, and does it. He doesn't put off today what can be done tomorrow, he gets it done today (or started). Our friend Darrin, has a Grandfather, who is much the same way. He keeps his body and mind active by completing projects. Those men are rarely down in the dumps, glum or feeling sorry for themselves. Tired, maybe. But tired, from completing a job or project is a good tired. And they always find time for a crossword or a good sports game, or whatever makes them happy.

SO...I figure the porch is a good project to keep me busy, while I wait for spring, and to keep my soul from sinking too far into glumdom. A bit more paint and my daughter's room'll be done. It's important that I also see the value in spending time doing these things. I'm not STUCK at home; I have the time to tend to my home, so I should use it. It'll keep my mind and soul busy, and uncluttered.

So while these cells in this body are behaving, let's get'er done.

Stuck

2010-01-31T06:40:00.000-08:00

I read a lot of inspirational stuff, and...I honestly try to inhabit each moment in my day fully, peacefully and with an abundance of gratitude, but this week I've been stuck.

I feel trapped by my body; trapped by my cells; trapped by my environment; trapped...period. It's hard to breathe when you feel this way. I feel so trapped that I don't even have anything insightful to write about feeling trapped.

I know what I want, and it isn't THIS.

I want to be well.

I want to wake up every morning knowing it's gonna be ok.

I want to never have to call an ambulance ever again.

I want to be able to go out with ffamily/friends and not have to worry about someone's perfume or a piece of dust potentially hurting/killing me.

I want to drive a car.

I want to be able to take myself out for breakfast on a Sunday morning.

I want to never feel those all over 'body migraines'. Pain sucks.

I want to sleep peacefully, without pain, anxiety or restlessness.

I want to never feel like a bear or 10 tonne boulder is sitting on my chest.

I want to be itchy free.

I want to be full of abundant energy.

I want my tongue never to know what tingling or swelling is.

I want to go a whole week without vomitting and gut pain.

I want my children to have their Mother back, in ALL capacities.

I want my husband to have his Wife back.

I want never to need this kind of cocktail of drugs just to keep me out of hospital.

I want white skin that never blotches or flushes.

I want to travel.

I want to take a bus, train or plane without fear of anaphylaxis.

I want to deal with paperwork that has nothing to do with ME and this failing body.

I want to be able to breathe all day, every day, without restriction.

I want to feel useful.

And the biggest 'want' that ALL people with Mast Cell Disease or Systemic Mastocytosis want...I want the old 'me' back, or some of it. And I want to stop wanting that because it can't be healthy, productive or useful.

I want to stop resenting people with 'normal' lives. It's the simple things that you miss when you lose them...

I want to stop explaining myself to people. Explaining Masto is exhausting. My God, there are soooooo many other beautiful things to talk about and think about.

And, finally, I want to be free.

Stuck is a lonesome place to be. And in the middle of nowhere, with no driver's license and nowhere to go (and invites that you can't go to because they are high risk & your body isn't co operating)...well, it's hard to see the beauty in that, despite my best efforts.

See...stuck. The roller coaster of Masto...up, down, up, down, up, down....

home-grown Hero

2010-01-17T20:08:00.000-08:00

Last night, my daughter was quite sick. A tummy flu bug that's hitting all the neighbourhood little people. This afforded me night watch nursing duties and the opportunity to snuggle with my barfing babe. During one of the interludes when she wasn't wretching into a bowl or a large saucepan, or screaming with gut pain, she gently turned to me, held my head and out of the blue, said:

"Mom, you're like Rick Hansen."

"I am?" I replied, quizzicly (and wondering if I should check her temperature one more time...which had been normal, despite all the tummy trouble.)

"Yah," she replied, "DID you know that Rick Hansen lost the use of both of his legs in an accident?" I nodded. "Yah, well, he did. He woke up to find he couldn't use his legs and his doctors told him he'd be no use to anyone ever again because he couldn't use his legs! And you know what he did? He didn't believe them, he said "NO!" and he got right up and got in his wheelchair and he started wheeling across the country. When his doctors told him he wouldn't walk or doing anything ever again, you know what he did? He said, "No, I'm gonna carry on!!!" and that's how you're like Rick Hansen, Mom, because when your doctors told you that you had Sys, Systam, oh, Systemic Masotosis, no Systemic Masto..cy...TOSIS, you know what I mean, you got right up and said, "NO, I'm gonna carry on!!!: You didn't sit down and cry and feel sorry for yourself and think it was all over. Nor did Rick. And you do, you keep trying to do 'normal' stuff that other people do even when you can't, but you try, and you try to make life as normal as you can. So, I think you're just like Rick Hansen because you both were told by doctors that you can't live your lives the way you want to and both of you said "NO! I AM going to live my life the way I want to." So Mom, you're like a Masto Hero just like Rick Hansen is a parapalegic Hero. Your my Mommy Hero!!!" And she squeezed me like she was loving me to the moon and back times infinity to googleplexes and back.

I was speechless.

Grateful

2009-12-22T16:03:00.000-08:00

Christmas is a fairly insulated time in our lives. Curled up at home with family and children who can't wait to open their presents, Poppa makes Christmas Breakfast with the boys, and then later we get those first whiffs of Christmas Turkey and then, even later, we gather at the table to delight in a feast together....ummmmmmmmmm, does it get any better than this? I find myself very reflective this time of year. Winter adds to this insulating effect. So, I thought I'd list some of the things that I am grateful for. I invite you to share what you are grateful for too.

Family and Friends, who accept you, warts n'all, for who you are, in your current incarnation and are willing to grow with your changes. You know who you are. I love you.

Family and Friends, who I accept, warts n'all, for all they are, in their current incarnations and in their ever growing changes. You know who you are. I love you.

An amazing, thoughtful, encouraging and strong man in my life. Thank you for choosing me. I love you.

Two incredible, delightful, talented and beautiful children in my life. Thanks for choosing me to be your Mum. I love you.

My Parents. Thanks for having me. Thanks for giving me life and helping me to become the woman I am. I love you.

My Inlaws. Thanks for having me...in a different sort of 'have'. Thank you for bringing me into your fold and your lives, and for being such amazing role models of parenting, love, support and guidance. You are dream Grandparents to these children that we love. I love you.

Systemic Mastocytosis...which, despite all of it's drawbacks, has brought some INCREDIBLE people into my life, all over the globe, from all walks of life and created some wonderful support networks, constant sources of strength and encouragement...AND they let me do this for them too. Soooooooooo good. You know who you are. Ok, I can't really say that I love SM...but if you have to have it, I can't think of a better bunch of folks to have it with. I love you.

The Farm. While we haven't managed to acheive all of our goals in living and learning on this little piece of heaven, we have made some magic and I've learned some valuable lessons in limitations and in living. Without this experience, growing food, loving our land, fixing up this old farmhouse, raising our children in the middle of nowhere, tending to and losing more chickens than I care to think about and learning to live as part of Nature's life cycles (prey/predator), I have a greater appreciation and passion for food that we 'know' and for doing whatever little bit of whatever it is that we can do to live a bit more simply. Convenience is costing us all our health and our families. The price on convenience is too high. So I am grateful for these valuable lessons.

The pile of garbage on my back porch. This pile of blag bags and recycling has taught me that we purchase waaaaaaaaaaaaaaaaaaaaaaaay too much crud with waaaaaaaaaaaaaaaaaaaaaaay too much packaging. It's not until you actually HAVE to wrap up your rubbish and take it to the dump or disposal centre that you realize that we must do something about HOW much garbage we produce in the world, and the purchasing choices that we make. I don't love you. But appreciate the lesson.

Charlotte, our dog. There are a few simple life lessons to be learned from the family dog: there's no such thing as too many cuddles; fresh air and a morning walk daily soothes the soul; carrots taste great, raw; spending the afternoon in the river/lake is one of the best things in the world to do and NOT to give it a second thought; sitting up front in the canoe, listening to the stillness of the river is one of life's most beautiful and precious ways to spend some time with someone you love.

Family Guy. I feel soooooooooo guilty everytime I laugh, but I laugh. And laughing is medicine for the soul.

Sleep. A necessary evil, but my God, what an amazing thing sleep is. I never appreciated it fully until I wasn't getting enough of it anymore. It's amazing HOW much grief lack of sleep causes my body (and others...) So sleep, I love you.

Abba. I'm still a Dancing Queen at heart. Moves my soul.

Seguin Fire Services and Parry Sound EMS...they've responded to my house sooooo many times this past 2 years. While I often feel better by the time they get here (thanks Epi!), I'm never out of the woods when they get here, and they have saved my life numerous times. Empathic and wonderfully warm, this amazing group of people always approach me with dignity, care and warmth...and even make me laugh in the face of emergency. Incredible.

I know there are many more things that will come to mind, as I sit here feeling grateful. So, perhaps I will add them as they pop up too. For now though, thank you for sharing this time with me, and I look forward to reading some of the things for which you are grateful.

Solstice Arrival

2009-12-21T04:51:00.000-08:00

For those of you that missed my Facebook update yesterday, we have a new arrival at The Farm. She's yet to be named but is a bundle of sweet love. Mum and baby are doing great.

We had NO IDEA this mare was even pregnant. HOW, you say, HOW can you not know your mare is pregant? First of all, she isn't our mare...so a few weeks ago, my Mum and I said to Deb (her owner) that maybe she needed worming or something because her belly was quite large. She told us that Misty is always like this, and a bit of a "belly breather". This, combined with the thought that her stallion was a "dud stud" (and ironically was gelded 2 weeks ago because of this...) no one even suspected there would be a winter surprise. Until 4 days ago when Deb came rushing into the farmhouse kitchen panting that "Misty gots boobs! They're FULL of milk!!! OMG, I think we're having a baby!!!!" So, we had time to bring her into the barn. Just as well, temperatures have plummeted to -27 or so the past 4 nights, not exactly baby-friendly weather.

Anyway, here she is...just an hour old.

Fundraising Effort for Mastocytosis Society of Canada

2009-12-19T17:48:00.000-08:00

We are pleased to announce our kickoff fundraiser for the officially incorporated Mastocytosis Society of Canada. IF you have magazines to renew, would like to give any magazines as gifts (especially for Christmas) please consider going to this site:
http://www.magfundraising.ca/grouppage.aspx?gredirection=1&e=1198356

The site is secure. From the purchase of your magazines, funds will go to support research for a cure, education and support for those with Mastocytosis (and its various incarnations) and their families, accurate information and access to forums & discussions which path the road to hope. Join us.

What is extra cool about getting your magazines here, is that you'll save up to 80% off the cover price. There are over 800 magazines to choose from. Incredible selection.

Just click on the link above, and you'll go right to the page. Thanks.

Life In The Bloglane

2009-12-08T12:05:00.000-08:00

In light of some recent negative blogdom, I had promised not to blog ever again. It turns out that this forum is useful and informative and as such comes with great responsibility...I've been asked NOT to cease blogging by some folks...so I think the focus of this blog will be what it has become...about this journey with Mastocytosis/Mast Cell Disease.

So here we go....

I'm wondering if anyone else with Masto./Mast Cell Disease experiences the following: getting really cold (even if the heat is on), hand shaking or blue nails/fingertips...not necessarily all at the same time. Another Masto. person and I were talking about this today. Turns out neither one of us are sure if it's Masto. related or something else. We've both had our thyroid's checked and they are fine. So...IF you experience, or have ever experienced this, perhaps you wouldn't mind sharing through the COMMENTS button? Thank you.

I'm having to moderate the comments only because this blog was being inundated by ads for penis enlargement products and the like, and apparently moderating comments ceases said such ads. Not even blogdom is safe from spamming.

Mastocytosis Society of Canada

2009-11-26T20:20:00.000-08:00

It's official!!!! The Mastocytosis Society of Canada is up, running and officially non-profit. If I'm permitted, or it's doable, will post a link on the side for anyone wanting to donate to helping us find a cure for this disease. Watch for our website in the coming months...we will be providing support, information, forums for discussion, Q. & A.'s, and helping you to know that you are not alone with this illness.

We will be instigating some fundraising endeavours for this worthy cause in the near future. IF you have any ideas yourself, please post a comment or email me with your ideas. We need to find a cure. This disease is real; it's debilitating and doesn't go away with positive thinking (despite my personal best efforts.)

There is important work to be done in this regard. Together, we can find a cure. We need to fund research and educate our world about this disease. I can't wait for our website to be up and running. Sharing our information, resources and ways to manage our lives is vital to our well being and for those that love us.

Feeling Groovy

2009-11-23T06:08:00.000-08:00

Well, ventured out on a small outing this past weekend, to a WalMart south of here in a more urban setting, with my Mum and the girls. My oldest daughter had a special birthday party to go to. I medicated before I went in...just in case & wore a mask. However, less than 10 minutes in the superstore and my tongue was tingling and I felt suddenly weak and light headed.

So, I told Mum to carry on with what the girls needed (and our small list) and I would head out to the car. Got that wonderful little pain in my right lung, that usually indicates my respiratory system is about to get involved. Then, I suddenly had to go poo and pee all at the same time...but needed to exit the building too. So, I raced out to the car. Just in time to chirp in the parking lot. Aren't I special to go shopping with?

It's amazing HOW quickly all these body systems are activated. I epi sprayed and took prednisone, and additional dose of benadryl, reactine, Gastrocom and ranitidine...as directed by my Immunologist. Epi spray is the bomb, but it stings on the tongue. Prednisone makes me fat and bitchy. Benadryl zones me right out.

Mum and the girls came out to the car. I realized, at this point, the dangers in wanting to 'run away' and handle these reactions on my own. I do this. Run away. Or try to. Mum got to the car and said, "oh my God, look how red and blotchy you are!"...oh right, I was itchy too. I told her I needed a bathroom asap. So, we buckled and drove over to Tim Horton's, which is a mostly harmless place for me. God help the poor person who needed the loo after I was done in there. Post-surgical constipation alleviated in one small reaction....amazing.

My poor body. Recovering from this hysterectomy and having a flare up like this. So, I spent the rest of my weekend, recovering from this little outing. In some respects, it was good to 'activate' my digestive system as I'd been having post-surgery, normal, blocked bowels. Feeling all regular now. And was pretty much back to normal Sunday night....just tired.

I want to feel ridiculous for thinking I'd be ok for this outting...but as some good friends reminded me, it's normal to test your limits...especially when they are so limiting so much of the time. It's normal to hope that after a surgery of this magnitude that you'll be ALL better. Especially when you've been feeling so much lighter, so much more 'whole' and feeling like a bowling ball has been removed from your gut. It's just a bit of downer to realize that environments are still dangerous and hurtful to this body. Obviously, I still need to be careful, take my medications regularly and be smart about where and when to go places. Sigh...

All That Ick Is Gone...

2009-11-16T10:14:00.000-08:00

Have been home a couple of days now, and am feeling unbelievably great post hysterectomy. Not sure now what I was ever worried about! Staff and Doctors at Orillia Soldier's Memorial Hospital were AMAZING, and they took great care of me. Precautions were taken due to Masto and my latex allergy, and I only had two anaphylactic reactions the day following surgery. Turns out it was my reacting, we think, to the antibiotic, Cephalax (I think that's how you spell it) that I've been given to ward off infection.

Now we know why I hurt so much.

I'm in less pain now, healing, than I've been in for about 7 years. Turns out I had pelvic congestive disease (not to be confused with pelvic inflammatory disease, which is an STD) which causes severe varicose veins in the uterus and pooling of blood; adenomyosis which is enlarged uterus where the endometrium fuses with uterus muscle and becomes enlarged because it sort of bleeds into itself; and then my cervix was hardened from all that weight and the size of uterus pushing down on it that it had prolapsed half way down my vaginal canal. My uterus was the size it would be if I was between 4 and 5 months pregnant and weighed about 4lbs. Doc says I would've hemorrhaged by about Xmas and quite possibly have died. Glad we got this done now. phewwwwwwwwww. Uterus is being biopsied. It'll be interesting to see if there were any Mast Cells lurking in there (and maybe causing the enlargement?)

Am on strict rest (even though I feel great), as not only had the uterus and cervix removed but he had to repair the ligaments and muscles that were holding the cervix in place under the uterus. They were stretched and badly damaged.

Mum is here for two weeks as I'm not allowed to do anything for 6 weeks.

Crazy...not sure how I'll manage that! But have to.

I would like to thank each and every one of you for your love, warmth, prayers, thoughts, light and grooviness. I felt completely loved and full of comfort going into the actual surgery because of you. Namaste.

Changes

2009-11-10T06:10:00.001-08:00

So, you all know that I have an upcoming hysterectomy scheduled for Thursday November 12th. Approaching the knowledge that I will be wombless hereon in has been a daunting task for me. I've lovingly been told by close family members that 'if it needs doing, it needs doing'...but it's still been a bit of a roller coaster ride working through my own surging emotions regarding it all. I'm finally feeling better about it all today. Which is good, because the alternative for me is stressing so badly I end up with migraines and gut upheaval or worse, allergic reactions....Ohhhhhhhhhhhmmmmmmmmm, been finding my neutral space.

My children are a bit worried about me being 'gone' (at the hospital) for so long. Three to five days, I've been told. Let's assume I'll make a stellar recovery and be home as soon as possible. My oldest daughter is fretting the most. Normal. I remember when my Mum had her hysterectomy (I was 10) and was in hospital for a week, it did my head in. Mind you, it was a closer drive to the hospital for us than it will be for my children and husband/family. However, my oldest daughter IS looking forward to her Grammie taking her to Karate on Wednesday night. Apparently, Karate is awesome if Grammie takes her. My youngest daughter doesn't seem too bothered by what's coming up...she's quite comfortable spending a few days at Grammie and Poppa's house and looks forward to chalk drawing on their paved driveway, as well as "spaghetti!!!!" I'm grateful, very grateful for my inlaws continued support. They've been absolutely stellar in this regard.

My Mum is coming out from Winnipeg for 2 weeks to help out with me, the house, the kids, the animals and making sure my husband gets a lunch. She managed to find unbelievable seat sales on flights from Winnipeg to Hamilton for a scant $89.00. Thank you West Jet!!! While I was all cool for recouping at the inlaws, I'm glad I'll be able to be at home, in my own home, for recouping. I'm going to have to find homes for a pile of my houseplants today or tomorrow as my Mum is allergic to them. Am trying to get all the laundry and house sorted out today/tomorrow. Although, my husband reminds me he can use the facilities and I shouldn't worry about it all...it's sort of natural to want to get this all sorted out beforehand, right?

So, all in all, this week is sort of all about the hysterectomy. Hope it goes well.

Hysterectomy and Scopes

2009-10-27T11:25:00.000-07:00

I was called on Friday to let me know that my surgery has been booked. Hysterectomy. I have, on top of EVERYTHING else, this rare condition called Pelvic Congestive Syndrome. Which basically means I have varicose veins, pooling blood, inside my uterus. My OBY/GYN tells me it's a matter of time before they rupture and hemorrhage. He's been telling me this for 5 years now. I've been trying to 'fix' this in other ways...to no avail. I'm basically in chronic pain in my lower ab region, all the time. Menstruation is hell. But, like all women, I get through it. There is also some thought that perhaps, just perhaps, I might have mast cells lurking in my uterus. Unusual, but they are showing up all over the place. Today, I just learned of a woman who had mast cells in her skull. After feeling ill for a while, and complaining of severe headaches for over a year, they relunctantly did an MRI and ta dah!!! A mass. When they went in to remove it, it turned out to be a mass of mast cells hanging out in bone marrow in her skull. Her bmb in her hip had showed nothing. So...ya know, crazy shit happens.

So, surgery is slated for Nov. 12.th. Apparently I can expect a 6 week, recovery period. eeek. I'm not very good at sitting still. Apparently, it can REALLY mess you up if you don't rest. Bowels and bladders end up sitting in the wrong places. Things like that...

So pre-op for this is Nov. 2nd, next Monday, in the afternoon.

Today I was called by the surgeon's office, who'll be doing my gut scopes (in response to my calling my GP's office to see where we were at with this because I can't imagine having a gut scope on top of an hysterectomy!) I see him on Monday Nov. 2nd too, in the morning. Scope will be scheduled for sometime between Monday and Nov. 12. They want to get this done before the hysterectomy.

Scoping will be both top and bottom (oh joy....) and they will be taking biopsies along the entire tracts for mast cells, checking for crohns, colittis and celiac scarring.

I hope ALL of this reaps some reprieve, some answers and some relief.

WHAT the hell is this like for my kids to have a 'sick Mom/Mum'?!?!?!? This is no way to be a mother.

It was my birthday yesterday. I turned 40. Yesterday my youngest daughter hugged me and nose to nose she smilingly said to me, "Mommy, for your birthday wish, you should wish that there is no such thing as Mastocytosis. That's what I wish for." Then she added that there should be no latex in the world either.

Yes, little lady, that's exactly what I wish for.

This Week

2009-10-24T08:13:00.001-07:00

This week has been a good week, overall. Imagine that...do as your Doctor tells you & use the knowledge that you've been learning in your quest to be healthy: avoid triggers and if that means being house-bound, so be it; don't eat foods on the lists (histamine containing and latex cross over concomittant); sleep; drink water; exercise in moderation (so as not to cause a reaction); find things to be joyful about and embrace those things; love fully, passionately and without regret. Be what you are, now. As you are. Stop trying to be EVERYTHING to EVERYONE. Stop setting yourself up for failure, but continue to dream of what you CAN do...

The strings on my yoga pants are longer today. My breasts look bigger to me, because the flub underneath them appears to be shrinking.

I've given up trying to make the few foods I can have, taste good. So, it's easier to pick at small bits of salmon, kamut bread with blueberry or blackberry or raspberry jam (raspberries are on the 'reactive' list but they've NEVER hurt me...), sauteed onions and garlic, squash, peas, green beans. Odd bit of chicken. Just to nourish myself.

What I am doing, is cooking for my family. Portioned for 3. Served with love. Prepared with love, gratitude and the desire to nourish the bodies of those I love.

I'm grateful for my Motherinlaw, who brings over baked treats. This way, I don't have torture myself with making them. Things like Brownies and cookies and muffins are difficult to make without wanting to 'cheat'. And 'cheating' makes my body hurt.

I should pick up some kamut and sourgham flour. These don't hurt me. I tried baking cookies with Quinoa and they tasted bitter and unrepentant. Even spiced with ginger, they were horrid.

I want to feel THIS good everyday. And my wish is for each of you to feel this good too. xoxoxo

Chameleon

2009-10-18T18:59:00.000-07:00

I had a pretty shitty week last week. Didn't end up in hospital (yah!) but came close a couple of times. Had a couple of days there where I was both scared and frustrated that I couldn't just shake the feeling 'odd', the feeling 'fat' or 'swollen', itching, pain, and sheer exhaustion that filled me up. Used more epi spray than I have before, and it worked. In my quest to be 'normal' I realize I must be fooling some folks because I heard this phrase quite a lot this week: "But you look fine" or "But you seem fine". Yep, that's me...feigning fine.

For short periods of time. But if you consider that this is the length of time people who do see me, see me, it's not that crazy that I "look fine". Benadryl has a 4 hour window for me.

Guess that Drama degree I have is paying off.

Besides, nobody really wants to hear that you feel shitty.

Couch Potatoe

2009-10-12T20:28:00.000-07:00

Greetings from the couch.

This isn't where I ordinarily spend my time. Ordinarily, I am running or puttering around cleaning up after my family. However, the past few days have been one of those 'not quite right' episodes. Nothing drastic has occurred but I feel like I'm on the edge of a big ugly reaction and am trying to keep the storm at bay. Tongue feels fat at the back (goes down with epi spray for a while and that comes back feeling all thick), it starts tingling (stops with epi spray), my gut has been on fire all evening tonight, felt like I was going to fall down (and didn't! Yah!), acid reflux (that I don't normally get), some lung pain and horrendous bone pain. I feel weak. I am exhausted, but can't sleep. I flushed several times today, the bright red ring around my nose and cheeks, leaving my center cheek bleach white. Very odd looking. And I'm itchy...the unscratchable itch. The itch that moves all over the body, under the skin & feels like it's inside too. Unscratchable.

I've taken all my meds, and as instructed, have doubled up on some. I feel sick to my stomach (haven't puked yet...yah!) and just feel 'not right'. We don't go to the hospital for 'not feeling right' unless I can't breathe; can't swallow or have passed out. Felt close to all those things today (and some yesterday) but it hasn't gotten out of control.

So what brought this all on?

Could've been the initial perfume on some woman in Tim Hortons (where I'm usually ok for short periods of time). I got itchy tongue, all over body itching, running nose and eyes within seconds of her scent getting up my nose. I was standing in line. I used my epi spray as discreetly as I could. I got up to the counter to order and both nostrils literally let go. Blood. Haven't been feeling right since. Have had a bunch of nosebleeds like this, spontaneously, since. This'll teach me to say out loud that I've been well for over 5 weeks now. Wellish.

I mentioned before this combination low histamine and latex cross over foods diet has been improving a number of things. For one, I'm not puking near as much as I have been this past 2 years. I'm experiencing less bloating and gastric distress. Less bone pain. Clearer mind function. No full on anaphylaxis. My tongue has even reached normalcy. It was like being reintroduced to an old friend: "Hi Tongue, wow you look great!" Not today though. It's swollen, cracked, has the little red sores that appear on it when I'm reacting, and...is fat.

My good friend Kim, in Winnipeg, sent me a great book recently called The Maker's Diet. The author has cured, yes cured, himself of Crohn's Disease. I have a good friend locally with this disease so I've seen how crap it is. My little brother has it too...he's managed to improve his symptoms with a combination diet and Naturopathic care over the years. The book is really cool. The author, who is Christian, has gone back to the Bible seeking guidance, and examples, of foods that our Biblical forefathers ate. They lived much longer lives than we do. And not living in our toxic world, obviously weren't aggravated by the side effects in our quest for 'convenience'. I'm a fair chunk of the way in. Some of the stuff outlined in the book isn't rocket science...to those of us who are, have been, or beginning to be chronically 'ill'. While everyone would benefit from eating this way and living the ways outlined in the book, it's not for everyone. Some of us feel we can't 'give up' our 'convenience'. However, for those of us who've HAD to give up that 'convenience', there's some good advice to be heeded inside the covers of this book. So, I'm trying it. I've got nothing to lose. I am unable to eat a bunch of stuff in the 'recommended' section due to the latex cross over and low histamine thingy but (perhaps not so surprisingly) most of the 'do not touch' lists are foods and things I need to avoid regardless.

There are some things in this book that I didn't know about till now. HSO's, little organisms found in dirt and such can be beneficial to all human beings. I have to be careful with mold spores and such but he suggests gardening as a good way to get your fill of HSO's.

So, what have I changed this past week or so, since getting the book?

1) I'm combining bentonite clay (in liquid form...I tried the dried stuff before and could never get the ratio right enough to be able to palate it) with psyllium (ok, orange flavoured Metameucil...it's what I have and we have to be careful about money right now.) It's gently removing any residual mercury or other heavy metal toxicity I may have left floating around in this body. (Mercury, is another LOOOOOONG story in my 'getting sick' journey...for another day.) The psyllium is removing the sludge from my intestines and colon. It's working. And before you suggest it, I don't think this is aggravating my symptoms this episode. It was definately that woman's perfume that triggered me....if we can pinpoint ONE thing. I feel no discomfort with this cleansing concoction. Drink it on an empty tummy at night before bed...cleaned out and on the loo by morning. I'm going to keep doing it. I feel improvement in the digestive area. Once my batteries are charged and changed on my scales, I'll see if my 'feeling' lighter has translated to physical lightness.

2) Am no longer consuming pig products. At all. Ironically, the pigs we've grown on our farm this past summer, that are almost ready to go to 'get dressed' (Nov. 25th) will not be eaten by me. Perhaps for the rest of the world this is ok, but for 'sick' people, it's one of the first foods you should eliminate from your diet. They are 'bottom feeders' (like lobster, crabs, shrimp, clams and oysters.) The book's stand on this is that 'bottom feeders' are "unclean" (garbage in; garbage out) and that the Bible clearly ascertains that man shall not eat pig. I've asked some Christians about this (who eat pig) and they tell me it's more 'custom' than anything; they tell me that back then there were no refrigerators to keep the meat from rotting and it rotted quicker than say a chicken; they tell me it's a guideline...not necessarily to be taken to heart. Interesting that other passages or instructions are taken to heart, but not this instruction. Where do you draw the line? Well this book says you draw it where God says so. Do not eat pig. If you're reading this, and you're Christian, I'd be very interested to hear your take on this subjecct.

3) Chew your food really slowly, with intent and permit your body to have the time it needs to prepare the digestive enzymes that will help digest what you shovel in. I'm doing this...chewing 30-70 times per mouthful...and what I've discovered is, I can't eat as much as I used to. Don't need to.

4) Get sleep. (Oh, says I, on the computer at 12:30 pm)...for every hour before midnight that you get to bed, it's like having an additional 4 hours of real sleep. Apparently. I'm up right now because I had a flare up and I have trouble sleeping on these nights. Ergo, I'm on the couch. I also pee a lot more when I flare up, so I'm nearer to the loo. But, I do need to get going to bed momentarily.

That's as far as I am. Lots more in the book to talk about. And if I find any other useful hints, directions and such, I will post them. I'm already doing a bunch of other reccommendations (cutting caffeine; relaxing, etc.) but I'm thinking there must be something IN this approach. If God has truly offered instructions and guidelines for living healthy and long, then we might want to heed His advice? Interestingly, The Qu'Ran's guidelines aren't that much different. Nor are Orthodox Jews'. So...maybe it's true that the pigs function on earth, much like the shrimp or lobsters fucntion, is to clean up and not be eaten? For me, for now, this 'garbage in/garbage out' approach makes some sense...and I often throw pig back when I eat it, so I don't eat it much anyway. I know that our pigs have been fed well, but the stuff you're buying at the supermarket has come from a feedlot where ALL the waste goes, so that's what you're eating. I wouldn't feel good about that, no matter how it's smoked or prepared. So as much as I love a bacon sarney/sandwich, it's no longer a choice for me.

Must get some needed sleep now. I hope you each are well, happy and loving your lives. And if you're Canadian, I hope you've had a fabulous Thanksgiving weekend this past weekend. I'd like to thank my Mother in Law for a gorgeous turkey dinner yesterday. It looked amazing. She makes it look so easy...another thing I aspire to do well in this lifetime. Happy Thanksgiving. We have a lot to be grateful for.

xooxo

Give Thanks!

2009-10-02T07:46:00.001-07:00

I am feeling incredibly full of love right now (even though I'm barfing up a lung, itchier than hell and feeling woozy.) The kindness of friends and some family members has been unreal regarding this prescription medication crisis that we're in.

I am honoured to report that since putting that little button (to the right) up on this blogsite, we have collectively pulled together $1110.00 (and some family members are in speaks with me about adding $500.00 to that...) which is TWO months supply of all the drugs I have to take!!!! Talk about incredible!!!

This leaves an additional $800.00 or one month's supply to sort out. HOW amazing is that!?!?! Three days ago, we had 3 months to sort out. And now, we only have one month to sort out.

At the urging of some Masto. folks, I've contacted Costco to see if their medication pricing will bring the costs down, so that we can get more bang for our buck and need less.

I also checked this week into whether our insurance company would/could transfer unused prescription credits from other family members on the plan to me and the answer was a big fat NO. It was worth pursuing though, as some company's do this.

Have got the Trillium (Provincial funding) application filled out...just need some documentation from our pharmacy (done) and from the insurance company (requested.) This funding will hopefully help us for the next calendar year with out of pocket medications that would kill us financially otherwise. IF funding comes through, retroactively, from Trillium (for now) I would love to be able to give the money that people have donated to us/me back to them OR (if they want) put it into a fund with the Mastocytosis Society of Canada (since I'm involved) for other people facing this kind of ugly crunch.

Overall, this outpouring of love and financial aid has lifted my spirits exponentially. Not because I love money but because purchasing these life-saving drugs isn't optional and facing financial uncertainty (omg, we can't afford these!) puts such a massive weight on a person's shoulders that it can feel impossible to breathe. I know the look on my husband's face when I told him our prescription coverage, for me, had been cut off and the massive burden that he immediately started carrying when he muttered, "Oh...shit..." I've been talking about my responses to this outpouring of support and love, but he is equally sharing in my sentiments. He can't believe how amazing you've all been.

For our American friends who are wondering why our incredible 'universal healthcare system' isn't covering these drugs...the system doesn't. It IS fantastic for when I need to see my doctor or have to go to Emerg. (more than the average person) and for seeing Specialist's, etc. but we have to buy additional insurance to cover prescription drugs. For us, this means through my husband's work. We pay a monthly premium for this coverage.

So...THANK YOU. From the bottom of my Being, thank you. xoxoxoxo

Prescription Cut Off

2009-09-29T11:40:00.000-07:00

Well the big news in my Masto and allergy world is that our insurance company has cut me off of prescription benefits for the calendar year. Ouch!!! We have a $5000.00 limit per person per calendar year, so it was only a matter of time before this happened. Actually, we've done pretty good at stretching out the year that we had. In all fairness, I started this drug regime back in late February, beginning of March so we didn't get a whole year out of it. And, it looks like we're going to have to get creative in order to make sure I have these much needed medications throughout the calendar year, every year. Obviously, my paltry long term disability payments and my husband's Parry Sound job AREN't going to be enough to keep this family afloat. OHHHHHHHHHHHHHHHHHHH, this bites!!!!!!

Like all Masto and allergy patients, I've played games with my medications this past year. This is mostly due to denial that I actually need them or depend on them for my living another day; for avoiding anaphylaxis or near death. I had attempted to 'skip' doses or 'not bother' with Gastrocom ($380/month) and Ketotifen ($150.00/month), two of the more expenisve life saving medications I have to take several times daily but, I only got about a day and half of feeling ok and then I went downhill really fast and have, during each attempt, ended up in hospital in full anaphylaxis and it's been REALLY bad. So, it would appear not having these medications is NOT a choice. (I am, however, grateful that my medications don't cost $18,000.00/month like some cancer medications.)

Some friends suggested we pull together a fundraiser or something to cover the approx. $2400.00 we will need to get through to January 2010. It seems a bit odd organizing a fundraisser for yourself (a bit of bad form, I'd say) but I wonder if that's pride speaking? It was suggested on Facebook today that I add a Pay Pal 'donation' button to my blog page and as you can see by looking to the right of this post...there it is.

One friend suggested that if 24 of my good friends donated $100.00 each, we'd be covered. But $100 is a lot of money, especially with children to clothe, feed and put into sports or piano or Scouts.; or even just living on your own. But what about 240 friends at $10.00? (Oh my God, I can't believe I'm even having this discussion...asking people for money...this just feels wrong.)

The reality is this...we're in this pickle right now and I need to have some faith (and action) that somehow the funds for these medicines will emerge. We need to plan and maybe buy some extra insurance for next year so that we are covered for the whole year. And, I think it's time I started figuring out how to utilize what skills and resources I have at my disposal (this laptop for instance) for making some money so that I can take that "donate" button off of my blog page.

In honourable mention, I would like to add that Julie has come to my rescue already with a donation worth $300.00 for one of my medicines. I am utterly grateful to her and her family for this help. $2100 to go...

In the meantime, my job is to avoid triggers and to continue sticking to this insane restricted diet that IS working.

Thanks all, and I hope everyone out there is well, healthy, happy and good.

Food n' stuff

2009-09-18T21:40:00.001-07:00

I hate to admit it but this bloody diet that Dr. Vadas has me on, is working. It's great BUT the list of foods I CAN eat is sooooooooooooooo tiny. I shouldn't complain...I mean there are things I can eat. This is the second time this year that I've gotten through a menstrual cycle without being in the hospital. YAH!!!!

This has me looking at food completely differently. For one, to realize that foods that we all take for granted that are part of most Western diets work like poison in my digestive system. This week I had a reaction (not anaphylaxis) to peeling potatoes, with Nitrel blue gloves on. I needed a mask too, I guess. Hives, itching, runny nose and eyes and that pain in my right lung. Same thing with the banana's and custard the other night. One whiff of that gorgeous smelling, just right ripe banana and I was the same.

Tongue has been puffy since. Tonight, when my husband and I went on a date I got itchy and those weird 'spots' that show up on my chest appeared with a big ring of red splotch around and over them. Tongue got tingly. With meds taken, it all died down within an hour or so. I was just sitting in a movie theatre (a small local one that I have trouble at/in) when it started AND I'd taken Benadryl prior to going in to offset anything.

Bone pain set in about an hour later.

So, now it's almost 1 am and I've got two eyes rolling in polar opposite directions from all the medications...

Overall though, this diet IS agreeing with me...no matter how much I dislike the lack of variety in it. I'm learning to cope with new strategies and with elimination of lots of stuff.

Emotionally, I'm a lot calmer and at ease these days. Very little bothers me (because if I let it, then I end up twice as bad...) and I'm not sweating the stuff that I can't control. For a control freak, this is no small feat. Being controlling isn't serving me, at all. Genuinely being at peace IS serving me well.

I've also enrolled and am doing Reiki Level 1. My teacher, Leah Wood, is AMAZING...a far cry from the crusty, miserable, pain-filled, chain-smoking woman she was when we both worked for the local municipality. She's a COMPLETELY different human being. Quite an incredible transformation actually. Like all things, she showed up in my life to teach this to me at just the right time. Turns out I've been doing this sort of thing already but I'm learning some cool techniques, and...to trust the 'healing' that channels through my humble hands. I'm glad that I'm not 'doing' anything so much as 'sharing' love and light. The toughest thing so far me has been permitting others to touch me. This makes me cringe. I am learning to 'receive'. And, it's been nothing short of incredible. We should all be touching each other a lot more, in this secure, safe and non-sexual way.

Namaste.

Blah But Good

2009-09-10T15:04:00.001-07:00

Sorry I've not been around much. I've been feeling pretty good overall this past week or so.

Husband had to take care of a honey bee infestation in our house (exterior walls) that could've been deadly to me, and of course it's now primo wasp season. One sting and I'm done. Plus, summer has finally arrived and I can barely stand to be outside for more than 5 minutes. No moving to the desert for me, obviously.

I hope you are all feeling ok or fabulous.

Pretty good, for me, btw, means I'm not in hospital or have had a trip via ambulance.

I've had tremendous bone pain and some slight tongue swelling the past couple of days but overall, am better since adhering to the strictness of the combined low histamine and latex cross over food diet. I'm up to about 11 foods that I can tolerate, but finding creative ways to combine them is a challenge. Some days I just don't bother eating...what's the point? I get down about food. I love cooking and eating but the joy is gone.

My Mum is here visiting from Winnipeg (ok, Anola, MB) for a couple of weeks while my inlaws are in Ireland. I hope they are having a smashing time over there!!! (drink lots of whiskey!!!!) It's great having Mum here. This past week has gone, altogether, way too fast.

Antony, my hubby, is doing his CPR/First Aid certification this past couple of days. He didn't need any coaching when they got to the anaphylaxis portion.

I'm off to my second Reiki class tonight. Really looking forward to it, despite how new agey it might sound.

Will write more when my energy levels are better. xoxoxo

How Has Masto or Allergies Changed Your Life?

2009-08-26T17:07:00.000-07:00

I'm just wondering, if you'd care to share, how Mastocytosis, Idiopathic Anaphylaxis or Allergies (Latex, or otherwise) has changed your life? Good or bad. Positive or negative. Large or small.

Thanks.

Gut Reaction

2009-08-23T17:33:00.000-07:00

We went to friends for dinner last night. I brought my own food. The hostess, Peggy, made amazing Chinese food from scratch. I ate a bit of chicken (a small morsel) and had a maki sushi roll that only had carrot, cucumber and pollack rolled in rice and roasted seaweed. Ate a small amount of my homemade turkey stew (ugh...bored of it already...), so went and got Rice Krispies and had those with lactose free milk instead. Gut was hurting by the time I got to Krispies. I couldn't finish either stew or Krispies.

We did dishes and part way through, I suddenly felt like I was going to fall to the ground. So I quickly reached for a seat. Waited. Felt like I was going to fall down while I was sitting down, so sort of lyed down on the chair and reached for epi spray. Took a puff. Waited. Realized I was having trouble swallowing, so took another puff and waited.

My attempt to be low key and inconspicous didn't work. Mostly because my face had already started to go beat read. Then my neck. Then I got itchy. Then I was going to puke. Made a beeline for the loo. And hurled.

The host, Pat, is my District Fire Chief, oh sorry, was...I'm not on the Fire Dept. anymore because I had my driver's license pulled due to all these blackouts. He came in to the loo. He's responded to my house numerous times with his crew and the Paramedics this past year and half. He knows how this goes for me. My not wanting to go to hospital was obvious. He gently said to me that while I'm breathing, we know how this can go and he'd rather not be called out to Lori's house (where us girls were going to have a girly "Twilight" movie night) while he's trying to have movie night with all our kids at his house (with all the dads babysitting.) I said I was fine. He suggested, gently, that I let Antony take me to hospital. "If you're fine when you get there, you're fine. If not, you're in the right place." I said I was fine. Then he noticed my tongue scratching between hurls. "Your tongue swelling?" I showed him. "K," he said, "tongue swelling, let's get Ant to take you in, ok?" I said I was fine and that I thought I was done throwing up for now.

We went into the kitchen. Everyone was looking at me. Lori said first, "Let Antony take you in. We've got the girls. They'll be fine. Just go get checked. You don't look ok, hon." Erin said, "Seriously, we've got the girls. You're not ok. Fi, you know how this goes baby, please go in." Ant said, "Let's not fuck around, let's go." Tim said, "Fi, you're not ok. Your face is red and your itching your tongue. Stick it out." Peg said, "Yeah, you don't look ok." I stuck out my tongue. They ALL said, "ewwww, no it's swollen. Get going." Peg said, "it's really fat in the middle." Lori said, "and on the sides. Not good. Go." I said I was fine. They ALL gave me the same filthy look. "Ok, ok, I'll go..." I said, "but I'm fine."

I wasn't fine.

Had to use Epi pen on route in the car because while my gut was on fire and felt like someone was gashing my large intestines with a serated knife, my tongue was continuing to swell and itch. Then my face broke out in hives and I was scratching like a fiend. And I puked some more (into a bowl Peg and Pat gave me and said that I didn't need to return.)

We got to Emerg. Another lady and I arrived at the exact same time. I could walk faster than she could because I'm only nearly 40 and she looked almost nearly 80. She was wheezing. So, I politely said at the triage window, "You're having trouble breathing?" She nodded. "Oh, then you should go first," I offered, "I'm breathing ok right now." The triage nurse said, "No, you're having a severe allergic reaction Miss, please come round to the door and I'll let you in." That was the shortest triage visit I've ever had. I was directed, with a nurse and my husband holding onto me, into the rescuc. room. My usual bed. It's just wrong to have a usual bed at the Emerg. dept. My husband said to make sure they were holding onto me because my BP will drop and down I'll go.

I don't know about any of you, but Epi makes me need to pee really bad. And often.

"I have to go pee really bad" I said. Two nurses, now attending to me said my husband could take me and they'd get the meds ready.

And wham bam, I pee'd, was ushered into bed, stripped, cardio leads on, IV'd and pumped full of Benadryl, some sort of steroid and Ranitidine within seconds. Oh, Dr. Sit was on. She's dealt with me before (back in April when she was an Intern...and is now a full fledged doctor.) She ok'd the drugs without seeing me this time. She knows how this goes. She came in within minutes of me in the room. Commented on my hair and my new highlights, and asked what happened. I said it wasn't as bad as it's been as my lungs don't seem to be involved. Just gut and throat. "Still systemic" she said. Antony piped up that I'd almost fallen down several times too, but hadn't actually hit the floor. Epi was drawn.

And so it went...up and down. More drugs and fluids. And by just past midnight I felt sooooooooo much better, despite continuing to throw up all that time. I was allowed to leave when my tongue stopped itching.

A weird thing happened a few times. Machines weren't broken. But, I would get these full on dizzy spells in the bed and seconds later, the machine would PING that my RR's had fallen to 4 or 5 or 2 and then the machine would go apeshit PING PING PING & registered me flatlining and "0" RR; O2 saturation would drop to 85 or so. I felt like I was breathing but...was super dizzy and then all of a sudden my heart, followning the dizzy spell, would start racing, dizziness would disapear and RR's went up 27 or 26. Not sure what all that was about. One time it happened, I was in the middle of telling the nurse about my restricted food thing (she asked) and I got dizzy and suddenly couldn't talk. She watched the machine's go crazy, looked at me and said, "Are you breathing? The machine says you're not breathing." By which time, I was fine again. The nurses weren't sure of what to make of it.

I felt fine by half past midnight though, so they let me go home with the proviso I come back in if I didn't feel ok. So I left.

Today's recovery hasn't been near as brutal as some have. I've had to take a wee bit of percoset for bone pain and if I wait 4 or more hours between benadryl and Gastrocom, I get itchy and flush all over my face and neck. My gut has been hurting pretty bad all day. I can't really eat too much. I can FEEL where the food is in my large intestines. I can feel where it's moving to and is. Most disconcerting.

Anyway, it's been worse; way worse. But not much fun. I would like to say that the two new nurses that I had at Parry Sound Hospital, and Dr. Sit were such a breath of fresh air. They took the symptoms presented as serious and dealt with me instantly, checked on me every 10 minutes religiously and were sooooooooo caring. Felt good not to be treated like I was wasting their time. So thank you.

I pray that you've all had a MUCh better 24 hrs. And that your bellies are being kind to you.

Thank you for posting your replies, support and encouragement. It means the world to me and totally helps.

Mastocytosis or Severe Latex Allergy combined with Catemenial Anaphylaxis?

2009-08-19T09:53:00.000-07:00

Saw Dr. Vadas on Monday.

Since my bone marrow biopsy came back 'normal' (once again an abundance of eosinophils; which I've had with both bmb's and all three live blood analysis' I've done with the Homeopath/Naturopath) he wants to put Mastocytosis on the shelf for a few weeks and forget about it as a possible diagnosis. I am, however, to stay on the medications for it because apparently I need all the help I can get.

He's taking a more indepth look at the whole latex thing. Doing an IgE mediated blood test for latex. As well, we picked 5 of the foods I have trouble with or have had trouble with, from the now extensive list of possible cross-reactive latex foods and we're doing blood tests for those. For the next 6 weeks I am to avoid these foods, plants and other possible reactants, that are on the latex cross over lists, as well as stay on the low histamine diet. Dr. Vadas said nicely, "I guess you'll be eating a lot of meat." I didn't have the heart to tell him that my gut can't tolerate pork & beef, and sometimes has trouble with chicken, turkey, etc. My husband made a joke about me eating lots of tofu...only trouble is, SOY is on the list of DO NOT EATS. So, today I went to get the blood tests (cost us $120.00 because they aren't 'normal' tests.)

It's easier to list what I CAN eat, rather than what I can't. So far, I've got:

oats
chicken (when I can tolerate it)
salmon (never have a problem with it)
raspberries
blueberries
rice
lemon

That's it. I'm likely to lose some of this bloody weight on a diet like this. Gonna have to be careful not to get constipated. Not sure if any of you fluctuate between severe constipation and diahrea but I do. No fun. Rarely is my gut balanced these days. Hasn't been for about 3 years now. And getting worse. It's weird how you get used to it.

I AM going to say this. I've been trying to cut out wheat from my diet for the past two weeks, since seeing my family GP, who can't believe that we haven't tested me for Celiac yet. His suggestion that I try it. When I don't eat it, it seems, my bones don't hurt half as much. It's incredible really. Nor do I bloat half as bad. It turns out that wheat is on the list of latex-cross over reactive foods...I didn't know that. I thought I had the list but it turns out it is WAAAAAAAAAAAAAAAAAAAAAY more extensive than I thought or had researched. Dr. Vadas says there are new lists. And, this is one of those cases where self-education is good for the patient.

Additionally, connected or not?, I went for the visual field test at my Optometrist's office today. She needed this last test to finalize the report for my GP and Dr. Vadas. Seems my left optic nerve has NOT repaired itself the way that we had all hoped it would over the past 3 years, and is worse. Love that question: "Fiona, have you been tested for MS?" I have. They found very small lesions on my brain that they said were of no consequence unless they get bigger. I sense another trip to Sudbury and an MRI sometime soon...

Hysterectomy is on hold. Dr. Vadas needs to sign off on the OK for it, due to the whole anaphylaxis thing. He says unless I have cancer in my uterus, NO WAY. Apparently, I'm too high risk and whatever pain I am in will have to stay for now. We have to get a handle on the anaphylaxis first. That's our first priority. This led to the discussion of Catemenial Anaphylaxis. This funky phrase basically means anaphylaxis during your female cycle. Ergo, more reactions during ovulation and menstruation...welcome to my world. This could be Masto too though.

So...sort of feel like I'm in the midst of a HUGE guessing game, OH WAIT, I AM!!!!! I'm past being frustrated. I realize now the importance of 'elimination' in this game, and my body needs me to remain calm, focused and as happy & healthy as I can be. This includes resting on those days I just can't do anything. Like yesterday. I'm exhausted today too, and haven't done much. And, this means being kind to myself.

No more telling myself that I'm a loser; that I'm useless; that I'm worthless; that I'm 'fine' and to just get on with it; that I've somehow 'created' this illness/whatever it is in myself.; and, no more hating myself for where I've ended up. What I must do is to treat myself with kindness and care. If I loved myself half as much as I love my children, I might feel as secure, loved, worthwhile, happy and healthy as they do. I can do this much for me.

Mastocytosis and Heat

2009-08-15T14:51:00.000-07:00

There is an instant sort of weakness that I feel when I encounter hay. Well, more specifically hay dust. I've described it in the past as, "the sort of feeling I imagine Superman feels upon being close to Kryptonite"...instant weakness.

It turns out that heat produces the same effect in me.

I find this most disconcerting.

The past two days, I've taken my daughters to our local favoured swimming hole. It's a gorgeous little piece of heaven that our dear dear friends Jay and Erin share with us. (A Landscaper and a Zookeeper...how's THAT for an amazing combination!!?!?!? One tells me that they haul dirt; the other how they haul animal shit. But whatever paths or vocations it is that brought us together, these past two days we have enjoyed the warm waters of our nearby lake sitting on land that belongs to our dear friends, who are warm and wonderful enough to share it with us. It's a blessing.) The trees are a deep deep green; the water is sort of bluey brown and completely clear (and you can see to the bottom of the lake where it's not too deep.) We share the waters with fish and snapping turtles; we share the land with numerous birds, squirrels, chipmunks, and blue-tailed skinks. We share the blue, white-puffy-cloud-dotted, sky with our neighbours. It's incredible. Except for the heat.

Instead of penetrating my skin, diving under the epidermis and warming my Being, I find the sun exhausts me. I feel myself drained, exhausted beyond comprehension; dizzy; heavy; itchy; & pained while trying to smile for my gorgeous children who are frolicking gleefully in the waters. I make myself share and inhabit this time with them; I push myself to the brink of finality in trying to be something that I'm not...I'm not ok in this summer weather. Frak. In truth, I can manage maybe 10 minutes of this weather before I begin to literally, feel ill. I have to use Epispray and Benadryl, and Prednisone and a slew of other meds I'm supposed to...

This is just wrong.

I manage about 2 hours, but I am ill for it. But I haven't died. That sounds melodramatic, doesn't it? We barely get home on our bicycles, thankful that it's downhill the entire way home to our driveway. Our house is on top of a fairly steep hill. Of course.

It's a blessed thing, this old farmhouse. It remains cool inside its walls...comfortable without any air conditioning unit buzzing away beneath the house or in the window. It's sooooooooooooo comfortable in here. At home.

My oldest daughter, 11 and half, puts the kettle on for tea. She wants to make tea these days. Tea, in our family, is a right of passage. Signaling the onset of womandom, we are permitted to first fill the kettle; then, permitted to plug it in once we'd mastered filling the kettle to the point where it's enough water for the teapot but not too much that it will bubble and spill over the lip of the shrieking kettle, spilling hot clear runny lava over the kitchen countertops and diving off the counter and onto the green painted kitchen wood floor. She has learned to make tea in a cup; and in a tea pot. Soon, we will learn how to make a tea party for friends; we will learn to serve tea. Tea is comfortable in a cooled farmhouse, on a hot summer's day. My daughter's offer acknowledges my physical discomfort, weakness and inability to make my own tea. This guts me on a deeper level. I've never wanted my children to parent me. I've said this to her before. Her response is this, "Mom, it's just a cup of tea. It's ok for me to make you a tea. Please sit down, rest and let me get you a cuppa, k?"

I refuse to flop on the couch, despite wanting to. I don't want my children to see that I am a 'flopper' or a 'flop'. I sit down. My bones hurt like I have the world's worst flu, or someone has taken a mallet to my bones. I'm too young to hurt this much. My youngest daughter runs to get a story book while my oldest daughter puts the kettle on. Tea and a story in a cool farm house, on a hot summer's day. Doesn't get much better than that. And, despite wanting to close my eyes to fall heavily into a full REM sleep dream, I stay alert for tea and a story with the girls.

Tea is served now. Just in the past two weeks, she has been steady enough to carry tea from kitchen to living room. She's doing great. The girls snuggle up under each arm, so that my shoulders are in that weird position that gives me a ready-made headache if I sit like it for more than five minutes. My shoulders are almost at my ears and my daughter begins reading. I'll take the headache (I hurt already) because this way I can hold them each to close under my armpits, like a Momma bird encapsulating her babies under her wings.

We each take turn on a page and try to read with feeling; with passion; without fear...now, all three of us are fearless readers. "Little Missy Bossy" or "Mr. Bump", "The Giving Tree" or "The Boy Next Door"...it's so fun reading stuff with my children that I loved reading when I was their age. They have other tastes too, and I enjoy reading that stuff with them too, but there's something poetic in shared books of enjoyment.

We can thank the heat for bringing us here.

Were I feeling 'better' I might be inclined to clean the house all day long until it was, well, past perfection. Ironically, no-one ever comes to visit on the days when the house is this clean. Instead, I'm settling for being aware of my own good fight these past couple of days. My fight to maintain as much joy and normalcy as I can muster, and not give in completely to the weakness that washes over me. I fight instead of settling for paralysis. I have to rest at some point; a certain point...and I'm learning where that is. But I know where it isn't, and that's at giving up. I haven't given up. I hold out hope that we will find a cure. I hold out hope that one of my vital organs won't fail me before these gorgeous girls hit High School, or travel the world, or go to University/College/whatever they want, or find life partners or make babies. So for one afternoon, I withstand as much heat as I can to make sure that they enjoy one of the many reasons that we moved up here in the first place...the lakes, the sun, nature and the water. I won't give up.

So, instead of being pissed off at the heat for bringing me down; and for my failing body that can't fight the strength of the heat, I'll thank it for the tea and story time. It's worth every moment of presence with these great children.

Post Shocking Fragility

2009-08-10T05:41:00.000-07:00

Wee hoo, I got to live another week.

Yesterday was the first day that I finally felt human all week. Dr. Vadas wants to see me next week. I was finally able to keep some food down on Friday afternoon, and have been fine since. S'ok, I dropped 14 lbs during that week of turbulence. Not exactly the way to drop a few pounds, eh?

So, today I feel more hopeful, rested and like life is manageable. There's nothing like epi's, ambulances, resuscitation rooms and not breathing properly to make you feel a bit fragile. Which, describes, exactly, how I felt this past week. Fragile.

The awareness that you can break, and might in fact break, is eye opening. Not the kind of awareness I was seeking in this lifetime, but a valuable life lesson nonetheless. The closeness that we 'shockers' come to death so often is eye opening too. My awareness that I need to inhabit my days fully and enjoy what moments I have on this planet has grown exponentially in the past two years. Each reaction or episode brings me closer to exercising this reality.

So I stop and take time to smell the roses.
I stop and always have hugs on hand for my children.
I stop and have a cup of coffee, just because it tastes good.
I stop and listen to my daughter's theories on life and the world.
I stop and fuss the dog because she wants loving.
I stop and listen to friends' talk because, one day, they or me won't be here.
I stop and watch a whole movie now, instead of getting up a million times during it to clean and putter.
I lie in bed with my husband and snuggle, morning breath and all.
I talk to my chickens and delight in watching them rip apart tomatoes. They LOVE tomatoes.
I stop and make a loaf of bread. It's warm, feels great in the hands and everyone loves it.

I've stopped being in a hurry to get to the next moment. This moment, right now, is the one I inhabit, because that next one might not be there and no-one is actually gonna die, nor are we gonna lose any money if I worry about the next moment or not. So, not worth expending that kind of energy on it. And, this cup of coffee that I'm sipping while I write this tastes extra good this morning. I've learned to appreciate a body that works mostly properly.

Post reaction fragility comes with it's own gifts...appreciation growth. xoxoxo

shocking

2009-08-03T09:40:00.000-07:00

am reeling from 3 days of shocking, in and out of hospital, 4 epi pens and almost 10 puffs of epi spray and all the usual meds. will write more when I'm stronger. remnants of this systemic response are hanging out in my gut...still can't eat. On the plus side, I've dropped 11 pounds according to my scale. not exactly the way to do it.

am weak.

Wallowing Wednesday

2009-07-29T13:44:00.000-07:00

Boo hoo. Woe is me. Poor me. Life sucks. Why me? I hate this.

That's all I have to say on the subject right now.

[Place wry smile here.]

Thursday's Thoughts & Not Me...

2009-07-23T17:19:00.001-07:00

Brain fog has almost taken over my Being today. It doesn't help that I woke up in the wee hours of the morning with a blazing headache and vomiting. I didn't recognize this as a migraine right away. Mostly because it's not the right time of the month for me to have a migraine. Those people I know that are receptive to weather shifts and migraines weren't affected today...despite the hours of rain that descended upon us. I'm wondering if the wee bit of a Vodka cooler last night precipitated this onset? Or was it the one piece of KFC chicken (that I puked up minutes after eating...)? Foolish mortal.

I tried my best to function today with this pain and puking and horrendous bone pain. I puked up all my Masto meds., several times. So I stopped trying to keep them in. I tried taking Percoset after the regular Tylenol was returned to the world via the loo bowl. However, the Percoset only served to make me dizzy and the sense of spinning and nausea was tenfold worse culminating in yet more vomiting. I tried to sleep. I hurt too much. I tried to keep busy. I hurt too much. I walked around like a Zombie for a few hours, trying to do the dishes, make sure the kids were fed and happy, make the bed...tasks that wouldn't normally take that kind of time, but today did. It wasn't until about 1:30 pm that it occured to me to take a Zomig rapimelt. As Gravol both oral and suppository were returned to the world via the toilet within minutes of utilizing, I sort of thought Zomig was the last line of defense. My problem with taking migraine meds is that IF you don't actually have a migraine, these meds will give you a migraine...I was scared to make it all worse. However, I took it in the end and put myself to bed with a hot bean bag under my aching neck and heat pad on my painfilled stomach, bowl nearby.

The other thing about migraine meds is, IF you wait too long to take them, they take a long time to kick in. Which was the case today. It took almost 2 hours for them to kick in. But they did. And magically, I now feel normal. I've even managed to eat some rice.

Obviously, I feel well enough to look at a computer screen without wincing.

As some of you know, my weight has been an ongoing issue for me. I've spent this past two weeks logging my nourishment and exercise on this fabulous website My Fitness Pal.com: http://www.myfitnesspal.com This site is FREE, and helps you keep track of your eating and moving habits, and your progress...or as in my case, NON-progress. What I have learned from this logging is that I'm not actually eating enough. I go to bed most days with a ridiculous 600-2000 calorie deficit. My body thinks it's starving. Unbelievable, actually. I mean, I'm having a REALLY hard time realizing that I'm not eating enough, because I often think that I'm eating TOO much. Trying to fill up the deficit calories past 7pm at night is NOT the answer either. Anything we put into our bodies past this point, pretty much turns to fat. So, I've realized that I need to approach what foods I can eat (and the list is getting smaller and smaller) and attempt to get them into my body during the day, progressively and in small amounts. Since getting that hiatus hernia thingy at the end of April (caused from all that coughing and vomitting) I'm finding it difficult to eat any decent portion sizes.

There is a part of me that thinks ridiculous things like, "what's the point in eating?" because I often puke it back up or have it run right the way through me. You'd think, theoretically, that I'd be a skinny skinny minny by now. However, my over decade of bulimia as a young teen and twenty year old young woman hasn't helped my body any and has set the stage for 'starvation mode.' My body obviously thinks I'm starving it...and is storing whatever I am putting into it as quickly as possible.

I'm going to have to make a real effort to shift this. Somehow.

Planning might be key. Simplicity in meals.

My GP wants to test me for Celiac. I've done some controlled testing on myself with foods in the past few weeks and I'm absolutley gob-smacked by how much pain/vomiting or diahrrea gluten seems to be causing me. Not sure I even need to 'test' for it any further (but will because my good doctor wants to get a definitive answer on this...) because I'm infinitely better and healthier when I don't ingest this stuff. Not even dairy hurts me this much.

What I know is, I don't want to be THIS unhealthy and I feel myself spiralling...this isn't ok.

I'm raw. Emotionally, physically and spiritually. A person can't take this kind of a beating for this length of time and not feel worn down. This weakened human being that I've become in the past 5 or 6 years, maybe longer, is NOT me. I can't believe I barely have time or energy for anyone else these days. This is NOT me. Ready for bed at 5pm. This is NOT me. Barely any thoughts to string together. This is NOT me. No energy for drawing or painting. This is NOT me. No energy to listen to the woes of others. This is NOT me. Grumpy, withdrawn, exhausted and broken. This is NOT me. Too tired for Yoga. This is NOT me. Pain that is so deep that it's often not touchable. This is NOT me. Overweight and burdened. This is NOT me.

How many of us look into the mirror these days and wonder where we've disappared to? Sucked into the vortex of sickness? This is NOT me.

I know it's not you either.

Except...what is, is...and says this IS me. And you. So hang in there, k? I'm trying.

Post Reaction Life

2009-07-20T06:48:00.001-07:00

It's Tuesday. The reaction was last Thursday. I am still waking up like I'm a train wreck. Ludicrous. Breathing and lungs and tongue have pretty much returned to normal...save for the really sore bit right on the tip of my tongue. My bone pain feels like arthritis pain now, instead of 'omg I want to die pain'...weehoo! Only needed the percoset for a day or two post-reaction. Past this, I don't feel like crying all day long and just hurt instead. And while pain is no fun, I can handle this level of pain. My gut, oh, my poor gut...the swings between severe diarrhea and constipation is NO fun. Not sure which is better. I'm definitely having issues with gluten, and I've come to the conclusion that no pastry, cake, toast or bread is worth this pain, especially when I can avoid it. I'm still paying for eating a bit of pie the other day. Just say no, is the way to go.

I'm exhausted though.

Shattered. Fragile. Dragging my ass.

I'm trying REALLY hard to hide this. For my children. It's summer holidays. What fun is a Mum who hurts and is exhausted? I tell myself I can be exhausted and in pain at night when they go to bed. And, do my best to last that long. Thankfully, yesterday, Erin took the girls over there for a swim so I could nap around 3pm. I totally wouldn't have made it past 5pm without that nap. In all fairness though, I had her girls and mine for a sleepover the night before and most of the day. It is soooooooooooooo nice to have friends over for the girls because then they amuse themselves and I don't need to be on top of events, activities or lots of energy. Energy, that I just don't have right now. I'm hoping that I can find meaningful and fun ways of enjoying the good weather when it's here with them. And using what spurts of energy I get in the best way possible.

I'm thinking maybe later this week, if the weather is nice, of seeing if we can go over to Grammie and Poppa's for the day so that we can visit with them, walk down to Rosseau Beach, meander through the village, etc. It's such a lovley little village. I keep thinking maybe we should move there. That way, everything is in walking distance. Including a pub and a bookstore! I probably wouldn't feel nearly as isolated if we lived IN the village. And, we'd be close to family and the nursing station/fire dept/emerg. responders if needed. Heck, there's even churches AND a liquor store. After this summer, I think I've finally come to the conclusion that farm life ISN'T for me. I like the idea of it. I like the work. But I'm exhausted by whatever ails me, and it knocks me for six. Not very good for farm production at all.

So, up in the air about all kinds of things. Can't even decide what to have for breakfast. See, I'm even waffling over that!

Confession

2009-07-19T06:32:00.001-07:00

I have to fess up.

Perhaps because this whole Systemic Masto. thing became a LOT more real to me this week, in the wake of a negative c-kit mutation in my bone marrow biopsy and then being told that this negative test does NOT mean I do not have this incurable and ever so frustrating disease. The news that we just sort of have to wait and see which of my vital organs starts shutting down first so that we can tell WHERE these funky mast cells are lurking, hit me pretty hard. Plus, having another very real and ugly reaction AT the hospital, and the fallout from that at the same time...it's been a bit sobering, to say the least.

This whole sense of limbo has shifted in some ways, and not in others.

I sort of mostly do as I'm told to, by these doctors.

Sort of.

Confession: in the four days before I went to St. Michael's hospital for the bmb test results I looked into my bottle of Cromolyn/Gastrocom, that costs $380.00 per month and thought 'is this stuff really making a difference?' and thought, 'we can't afford this' and thought, 'if this is all in my head and I'm just a hypochondriac then I don't really need this'. It doesn't take a genius to figure out that our drug plan, that caps us off at $5000.00 per calendar year is going to say 'no' to the prescriptions at some point in the next coming months. Gastrocom is only ONE of NINE medications that I take daily. So, I did, what some other masto patients do, and cut my four doses per day down to three, then two...and that's about as far as I can stretch it; make it last longer; cost less. There's a price to pay for this cutting though: I flush; have horrendous gut pain, puffy tongue, I itch, and flare up at the hint of an allergen. Turns out that I can't cut down this much at all. I guess Dr. Vadas is right about having to take it ON TIME, PROPERLY...or else, someone's perfume can set you right off.

My past 12 weeks of no hospitalization/emergency crew reactions had me thinking that I was actually immune to this shit. I was starting to believe I'm normal. I was starting to believe I'm ok. I was starting to believe that I don't really need to take all this medication; stay in my house/on my property; starting to believe that somehow, on some level, I just want to be a social dropout and that I'm somehow creating this little bit of 'sick' reality for myself. I was starting to believe that if I just WISH/THINK I'm ok, I will be.

Wrong.

I've mentioned that I'm not the only Masto patient that does this. However, the fallout from this not taking our medicine's properly stupidity is just that...stupidity. It's unecessary. And, it's foolhardy. There is a possibility that HAD I been taking my meds properly, I might not have had such a massive reaction to that woman's perfume. Having said this harshness, I am aware of the internal struggles that we have in coming to terms with this weird disease and its impact on our lives. So this juggling or roller coaster ride is pretty normal, despite being not very healthy or ok. The whole not knowing FOR SURE that you have Masto though and whether or not these drugs are actually helping you or not (for real???) is always present.

I've done this before. And you think I would've learned. Everytime I do this (forget my meds; get slack about the meds; think I don't REALLY need the meds; get into my pocket of medicinal denial and tell myself this is ALL in my head and I am nothing but a big loser for ending up where I am, healthwise, UGH...) I get into trouble. I have a HUGE reaction. I usually end up in hospital. This toll is a large price to pay for my own stupidity and denial. Not just for me, physically. There is my husband, children, family & friends to consider too. This messes with everyone's schedules, and welfare, emotions and concern for me and concern for my children and animals.

So, lots of thought about WHY I do this, has crossed over and over the gray and white matter that fills my skull in the past few recovery days...it's because I want this all to go away and not exist. And, I want to believe that I don't need these drugs. And I don't want to be dependent on medicines to keep me safe and alive and well. Especially Western/Allopathic medicines, that ALWAYS have some kind of side effect that'll catch up with you one day. And, because my diagnosis seems so defined one day and not the next...I don't know whether I'm coming, going, been or gone.

Dr. Vadas is right. KNOWING is better, than not knowing. We were all hoping the bmb would reveal something other than limbo. But here we are...swinging in and out of possibilities, and the fact that the 'markers' for Systemic Mastocystosis still have a long way to go. Hematology at St. Michael's Hospital seems to be under the opinion that the bmb just reveals SM's presence IN your bone marrow and blood, and only that. It can and could be lurking elsewhere. Ask Dawn, of Breaking of Dawn Blog...turns out that hers has been in her stomach this whole time. (You can link to to her story over there on the right...)

So, where is mine?

I had to use Epi spray twice again yesterday to stave off serious fallout from paint fumes at the parental's home (my fault, I shouldn't have gone down to see what Niall, my brotherlinlaw, was creating...) and from some other unknown while we were out grocery shopping. I obviously can't go into stores, despite my unwillingness to accept that I can no longer fulfill this vital family function in our home anymore. There are a few shops that are the exception, thankfully. Mostly wholistic, whole food and organic/natural shops. I'm not sure about what is an ok amount of Epi spray to be taking, as I can't find this info anywhere...so my GP/Family doctor is on this and trying to find out. He couldn't find it on his palm pilot either. I've had Epi spray almost every day for the past two weeks. This can't be good. And, it's a sign that some things need to shift. Taking emergency medicine daily isn't ok.

So, the confession is this: I didn't take my meds properly; I've been in denial AGAIN; I've been stupid AGAIN and there is a price to pay for this. And, it's not ok. So, it has to stop.

yesterday

2009-07-17T13:33:00.000-07:00

I've emailed this post that I wrote for my immediate family (to the ones I didn't actually speak to yesterday) to a few of you already, so I'm sorry to repeat myself. However, after some thought, I think it's important for me to be real about this health chronicling, especially when it gets this dark for a person. When I say that if someone had offered to slice my throat for me and let me bleed to death last night and it would have been less pain than what I experienced post reaction, I mean it. I got about an hours sleep last night, and that was with 2 prescription sleeping pills. My life is good, and I love my kids and husband and friends and community (which includes you) but I was tempted to down the remainder of my full bottles of various anti-depressants (that didn't do a thing for me when I was on them, in the end) and the full bottle of sleeping pills I have and anything else that would help this cocktail...last night I was ready to leave this planet because this pain, physical body pain, was unreal. I forgot, until this morning, that I'm usually in hospital at this point and when I get to the point that I can't stand myself and am crying myself into oblivion because of it (and reeling with self pity) a nurse usually suggests that she give me some morphine or percoset (if I can keep things down.) Today, I've purchased a King Sized wet/dry body heating pad because my regular sized one wasn't big enough for the all over body pain I had last night. I couldn't figure out where to put it because every single bone and joint in this body hurt that bad. I was unbelievably cold too. It's July. I had a heat pad on, blankets, wrapped up AND the space heater on in the family room where I slept so as not to wake the rest of the household. I was frozen. My body temp read 89 degrees farenheit.

Reasons to live are important. Especially in the wake of these kinds of invasive thoughts. It's odd today, to me, to be real about how bad that pain gets and how putting yourself out of misery feels like a better way to get through it. Glad I ignored myself. My husband and children are damned good reasons to keep going. Plus, I guess I should really get to work on finishing the two books I'm writing.

I saw my family physician this morning. He's not impressed with how I was handled (or rather not handled, yesterday) and couldn't believe they let me leave the hospital like that. He's given me Percoset for the bone pain. He knows I'm adverse to taking this stuff. However, for nights like last night...

We've also decided to move back to Orillia for the hysterectomy because the only reason the procedure was being moved to St. Michael's hospital was for this whole anaphylaxis/Masto complication thing. This new gynaecologist didn't listen to me about my not doing well on any kind of hormones, or that the IUD I had installed disintegrated inside me, and refuses to call/speak with my Oby/Gyn in Orillia who's SEEN my uterus and knows what the problem is. The new Oby/Gyn has written a full report of my GP, and my GP asked me what I thought of all this. I said I wasn't comfortable with this new guy OR the fact that he wants me to go down roads that I've already been down in the past few years for the same tests to reap the same results and won't even have a dialogue with my Orillia Oby/Gyn. My GP will speak with my Orillia Oby/Gyn about getting this hysterectomy done soon AND they are going to test the uterus for mast cells because it could be that all this hell is sitting in my uterus. Different, but likely. IF I have mast cell issues lurking in vital organs or body systems, my pain sites tell me it's either my uterus/right ovary/right kidney or right adrenal gland, and my stomach/intestines. My GP thinks there is a possibility that we might see an improvement in this whole mast cell malarky without the uterus. There's DEFINITELY hormonal involvement. Got my period yesterday afternoon, with a vengeance.

Anyway, here's what I sent to my immediate family that I did not speak to personally yesterday.
************************************************

I'm so sorry that I'm writing this this way again...I'm tired of talking about this shit so I can't bring myself to repeat myself. I don't want to talk about this on the phone either, right now...if that's ok.

No c-kit mutation on my mast cells. No sign of the other even rarer disease. Oncology/Hematology is closing the book on me and I'm back to Dr. Vadas, my Immunologist.

"WEE HOO!" I said, "so I DON'T have Systemic Mastocytosis!!?!?" My enthusiasm (which when you read down you'll understand why this sentiment wasn't exactly easy for me to express at this time...) was met with a definite "No, that's NOT what this means." It just isn't present in my blood or bone marrow. Quite possibly present somewhere else, I was told. Dr. Vadas might have other suggestions, they said, but likely we won't know until one of my vital organs starts shutting down. They don't know enough about the disease to know what all the markers are for it, and this was a stab in the dark. So I was told I probably still have SM despite this test result being what it is. because clinically, I present in every way as if I have Systemic Mastocytosis. And was told to stay on my medications.

Add fuel to an already sensitive fire: I had a reaction in their waiting room before I saw the doctors. I'm pretty sure it was the Polish lady that came in with super strong alcohol-floral based perfume and sat across from me. We can call this a little reaction, or medium. I was fine when I got there, and all the way down to Toronto in the car. Although, now that I think about it, my bones were already hurting and I had a slight headache, which I attributed to possibly being ready to have my period (which hit me dead in the face this afternoon on route home...oh joy.) There is a huge correlation between menstrual cycles and Systemic Masto. in women, they are discovering. However, after about 20 mins in the waiting room, I began coughing, spluttering, getting short of breath, flushed real bad, eyes and nose running. I've had waaaaaaaaaaay worse reactions, but it was unpleasant. No-one came to see if I was ok...I mean, I wasn't coughing when I showed up. Ant went to ask someone to move me after two epi sprays didn't keep it at bay, initially. They fumbled around not really taking him seriously until he yelled at someone "Look, my wife has life threatening allergies and someone has worn stinky perfume or something and set her off, now PLEASE help me!!! She will go into full ugly anaphylaxis if we don't move her out of the allergen!!!! NOW!" I heard them say they had a room, Ant came back to get me. I got up to go with him, and probably shouldn't have because I was feeling super light headed all of a sudden when I was sitting, and the tachycardia (rapid heart beating) I'd had since before I started coughing and the sense of panic/dread/omg, I'm gonna die feeling that had prompted the 'go get someone' nudge, suddenly disappeared seconds before he returned and I felt 'funny'...next thing I know, I get the all over body tingle and then...I'm on the floor saying, "I'm sorry, I'm sorry..." (and not knowing why I was saying this but aware I was saying it, like it was someone else saying it...) and my head hurt like hell. I have a nice goose egg on my skull where my head, apparently, made contact with the cement floor. A nurse was called, and came over to see me while Ant was holding me on the floor telling I'm ok, "you're ok, I've got you, you're ok, I've got you..." over and over. She asks me what happened. I try to tell her but it hurts to talk and breathe and my tongue is fat.

No-one gave me epinephrine. Or took me to Emerg. or called for help. Not because I didn't need it but because they all just stood there going, "...er..." Not sure where all those people came from but...none of them knew what to do.

I continued to feel like I was going to fall down, even though I was already down...that's a flippin' weird sensation. I've gotten really good at knowing this drop in blood pressure feeling now. It was really fast. And disconcerting.

Someone decided to move me to a room, and collectively they grabbed me and put me in a chair in a nearby examining room. I gave myself more epi spray because this reaction wasn't over.

Doctor came in to check my pupils and they were fine, just a raging headache. I'd given myself one more epi spray by then. And all that breathing, trouble swallowing feeling, pain in my lungs eased up. Then I puked that wonderful ball of allergic foam that I do during reactions. And puked some more.

Then they told me about the bone marrow biopsy results and told me that I could go home. To come to Emerg. if I didn't feel right, started having trouble talking or passed out again.

Don't think Dr. Vadas is going to be very happy about this. I left there with a throbbing head, fat tongue (no -one looked at it and they were afraid to use their instruments to check my breathing, lungs, etc because of the latex issue) and am now in excruciating post reaction bone pain, headache of unbelievable strength, feeling worthless, useless, depressed and super sorry for myself. I should be exhausted, but as usual, I can't sleep now. I'm in so much pain, I, I dunno, I can't even describe it. Thankfully I have a loving husband and children because...I'd let someone shoot me right now otherwise. I'm sooooooooooo frustrated. Don't get me wrong, I'm thrilled this isn't in my bone marrow/blood (no ugly genes or gene coding to pass on to my girls) but the two doctors I saw (Dr. Hicks, my Hematologist is about to drop those twins, hasn't yet, and wasn't feeling well enough to come in today, so I had her replacement - Dr. Hicks brought her up to speed on the phone this morning about me - and this other doctor who got called when I passed out...) just said they were sorry, my life must suck. Avoid triggers and stay safe. Maybe 10 years from now they'll understand more about this disease and its markers but for now, it's so new, they don't really know, and obviously bone marrow biopsies are proving not to be all that helpful (THEN WHY, WHY did I have to go through this again!?!?!??!)...it's a guessing game. For all they know, I could be the first of something else and this could well be Fiona Smith Disease...oh great, THERE's a legacy that I want to leave on this planet.

I did ask if maybe this was all in my head and was met with a united, "NO! There's no way your body can do all of this psychologically. Impossible. No, there is definitely something wrong; You are definitely sick..."

No shit. All of you know though, that I refuse to define myself this way. I'm not in denial that something is wrong but I can't stuff myself into the 'sick' box and stay there. If there's a box that I'm to be stuck in, I won't stop trying to redecorate it, get out of it, make it more comfortable and find ways of enjoying it or to escape from it, even if temporary. Not today though. I'm raw. And hurt. And angry. You all know too, that I try very hard NOT to be these things. Or to feel sorry for myself. I know it could be worse. I don't have leukemia...it's not my child with this. But fuck, I've had it.

Have gotten home, and there is chicken carnage all over the garden, down the driveway, down the road...and it's too dark to see how many of our 32 hens are left. We've found 4, who are alive but might not make it to morning due to shock. Will reassess in the morning.

I can't do this anymore...I'm so tired. Someone please make this go away. And I'm sitting here asking the rhetorical question: HOW the hell did I manage to invite this crap into my life?

Thank you for your continued love, patience and listening. I love each of you for reasons and for lives that are too enormous to mention.

I know sarcasm is the lowest form of humour but, Wee Hoo, I get to live another day.

oxoxoxoxox

fiona

Home Safe and Sound...

2009-07-13T08:37:00.000-07:00

It was a glorious wedding; it was a glorious trip. Will post photo's and more info. soon. Just so darned tired from all the trekking and visiting. I consider this trip a success but my husband reminds me that I needed epi-spray almost daily and on route home we had an 'almost' trip to the hospital that 4 sprays of epi-spray fixed (plus the normal barrage of meds.) I was doing MORE than I would normally at home and did go places that I wouldn't normally risk. Felt so good to be DOING stuff though. Having said that, we were careful.

See Dr. Hicks on Thursday this week to, I think, go over the bone marrow biopsy results. They called me the day before we left to go to Winnipeg to see if I could come in the next day or the following day. Couldn't as we were leaving. So then they offered the next week but we were still going to be away. So...this week is it. Wonder what this is all about? Her secretary/nurse refused to give me ANY details over the phone...only that Dr. Hicks would talk to me about all this when I saw her. Hmmm....

Hope you are blessedly good.
xoxoxoxo

WHA????

2009-07-03T19:54:00.000-07:00

Explain this to me...I've had this horrendous cold for about 10 days now, and during it all I had total reprieve from bone pain, itching, flushing and minimal digestive disturbance. My cold is now exiting and whammo...I'm right back to the need for new bones and my desire to get out of this body and into a new one. My tongue is puffy again and has those red lines of soreness on the tip that make it impossible to enjoy eating.

Dr. Hahnemann, the Grandfather of Homeopathy, says that it is impossible for two diseases to manifest in the body at the same time - the stronger of the two will manifest first and as it subsides, the second one will begin to manifest. Think about it, have you ever seen anyone with chicken pox AND a cold? Or the flu AND mumps?

Could this be going on?

So tonight, I'm not sure if I'd rather be coughing up a lung sans bone pain; or, bone pain sans coughing up a lung.

Please, please, please don't let me have a reaction tomorrow during the day of this wedding. Wrong kind of drama for a day of such blessed celebration.

And, congratulations to Heather and Julian on tying the knot. Heather's attitude and love of simplicity has made this whole wedding preparation thing wonderful. Mind you, I haven't spent the past three days with her 24/7...

k, must sleep. A full day beginning very early tomorrow.

On The Road

2009-07-01T19:52:00.000-07:00

So nice to have made it just over 1000 km's today without a serious reaction. Was quite vomitty sick on the road after I ate a sandwich (that I made) but am delighted that I'm ok in a hotel room!!! And have made it this far without being in hospital. We're staying around the corner form Thunder Bay's Hospital. I AM, however, now having skin reactions to my Medic Alert stainless steel watch. Now what do I do? I'm allergic to Nickel.

Dr. Hicks, my Oncologist/Hematologist's office called the other day and she wanted to see me this week but we have this family wedding to get to. Can't go next week either. So, July 16th will be my date. I asked if the results from my bone marrow biopsy were back and her staff said she couldn't discuss that with me. Dr. Hicks wants to see me soon. Not sure what to think about that.

Really looking forward to this wedding. And, will post some photo's. My daughters are flower girls and the bride is my gorgeous cousin Heather. Can't wait!!! I love weddings. AND, I can't wait to dance with my family...my Mum, Heather, Auntie Pam, my brother and cousins. We ALL love to dance and be merry!!!

Happy Birthday Canada. I've been living here 27 years tomorrow. Thank you for being such an amazing country to live in.

No Masto Here Day: Aging

2009-06-27T20:25:00.001-07:00

What is it about us women folk that we fret over a perfectly natural process that is part of living...aging? Isn't it absurd that the women amoung our species make and doll themselves us as part of the mating game that we play with our men (and fret about showing signs of getting old or that we can't 'make ourselves up' as easily, or the same anymore) and in almost every other species it is the ...male that struts, cocks, preens and prunes his image so as to attract a mate...? (I have to stop wondering things like this, it only leads to wondering absurd things like 'I wonder what the world would look like if everyone had their own special coloured farts - you know, that would poof or dart, depending on whether you toot or let rip - be hard to blame the guy next to you in the elevator.)

My husband says I think too much...

Michael Jackson & Me

2009-06-25T18:43:00.001-07:00

It's been a few days since I blabbered on about this disease that my doctors think I have. There IS more to life than this disease; and I am more than the sum of allergic reactions, masto flareups and feeling like crap. I'm not usually one to jump on the celebrity bandwagon, however, the "King of Pop" has died and with him has died the icon of my youth. I know he got 'weird' over the final years of his life and had this intense pre-occupation with plastic surgery and (shiver) little people. I've had trouble getting my head around the whole child molester part of his life. I don't want to down play it however, this is not my personal experience of Michael Jackson.

We moved to Canada when I was 12. I went to high school in Canada, (Oakville, Ontario, Perdue High School (recently demolished) to be precise.) I was British with a very thick lower middle class pseudo-cockney accent and my new schoolmates had a hard time understanding anything that I said. It didn't help that I started High School when I was 12 (thank God they didn't put me in Grade 11, like they were going to...) so I spent the first two years feeling incredibly homesick and alone. I went home to Days Of Our Lives and, music. It was a scant year or two later that "Thriller" came out.

With it, not only had I discovered that I loved roller skating but I also found out that I loved dancing and emulating moon walks, pelvic thrusts, dynamic twirls and standing on my toes. I spent countless, endless hours practising in our living room. My dad had left us and my parents split. I was living with my Mum in the first of many rental homes with green carpet. We were broke. However, I had a record player AND the Thriller Album (that I bought with my own babysitting money.) I put Thriller on, and danced, and danced, and danced. I sweated. I got trimmer. I got sassier. And finally, discovered some self-confidence. I forgot the custody battle, the alimony battles and my Mum's struggles to feed, clothe and shelter me. When the needle hit my record, there was only me and Michael.

My Mum thought it was good for me. She bought me poster after poster of Michael Jackson (one of the few indulgences she could afford us) and I carefully plastered my bedroom walls with him. I never noticed, until he became white later, that he was darker skinned than me. I never noticed the nose he was born with that he would go on to alter and change time after time, seeking nasal perfection. I've always felt sad that he wasn't comfortable in his own skin. To me, he was the man in the white suit who sang like an angel and moved like a God.

During one of the many rental moves, my box of records accidentally had a solid oak table top dropped onto it. You couldn't convince me that it wasn't on purpose. My Mum's new boyfriend had dropped it and the ONLY record in the entire box broken, was my Thriller album. My Mum tried to find me another album, and believe it or not, it was impossible to find one. She got me the Greatest Hits of Michael Jackson; The Jackson 5 Hits; and various Michael Jackson compilations and singles...but couldn't get her hands on another Thriller album. I suspect, still, that her boyfriend (now her husband) wouldn't permit me to have another one. He hated "Wacky Jacky", as he always ludely referred to him. I took offense every single time he called Michael that. I thought it was a crude ploy to prevent me from dancing in the living room with the record player blasting. Those days were over. The boyfriend had moved in and the living room no longer belonged to me. There wasn't enough room to dance in my bedroom (they'd put a Queen sized waterbed in there.) So, I had to contend with posters of my pop icon staring blankly at me. I spent less and less time at home; and my record player was hardly ever turned on. But I moved on to nightclubs, surly moods, black clothing and The Smiths.

The music, style and dance of Michael Jackson saved me. It kept me from seeking pain relief (home sickness; divorce; inability to fit in; crushes on gay friends; crushes on boys that I thought never noticed me...) in the arms of drugs, boys or other vices. I danced through my pain. I danced through my insecurities. "Billy Jean" and "Beat It" filled me with passion, confidence and the drive to dance the best I could. Michael's music created a much needed bridge for me...the bridge between my fears and darkness, and the bright self-confident girl I became. Madonna and University did the rest...

So, Michael, even though I was SURE I was the girl for you (along with 10 million other girls) and went to bed many many nights dreaming of dancing with you, thank you. Thank you for the music, the moves and the motivation.

Truth Being Stranger Than Fiction

2009-06-24T19:42:00.000-07:00

My grandfather survived WWII. Found dead in his London, England home. Alone, he'd been murdered. No-one was surprised because he was a bit of a bastard. He'd been dead for 12 weeks. No-one missed him. Except me. But then, to my mind, I'd never met him.

The post man found him. No longer able to stuff letters in through the letter box because the pile was too high, he remarked to a neighbour that there was an odd, disturbing smell coming from inside the house. The neighbour concurred...he'd not seen Peter or his Doberman dog in a while. The police were called. The dog had died of starvation but had eaten most of the house trying to live.

Grandad and I began our relationship when I was 10. That's my understanding. of this history. His history of us began just after I was born. We lived with him for a spell when I was a toddler in Richmond (England.) My mother, the only time that she speaks fondly of her fatherinlaw, says he called me his "Poppet" and was always trying to give me "sweeties", that he called "Minnies".

Our real relationship began with a letter. Grandad handed the letter to my parents at the funeral of my Uncle. My dad's brother had succumed to Cardio Myopathy at the tender age of 26. Estranged from the entire family, my grandfather showed up at the funeral with body guards, fearing for his life. Afraid that my father, or someone else in the family, would reap vengeance on him for his misdeeds and violent past, he came prepared.

It was the first letter anyone had ever written to me. Solely to me.

Whether I lived in the same country as him or not, he always wrote to me on airmail stationary, blue and wafer thin. Almost like onion skin. His name and address were embossed in the top left corner of the paper. As his paranoia worsened, our letters became invisible. I was 17 when he sent me the blue/black light and invisible ink pen. He told me in BOLD LETTERS that our continued correspondence must be written in this ink, so that no-one else could read it. He was teaching me the ways of F.R.I.

Over the years, beginning at about the age of 12 (just shortly after we moved to North America) he sent me books. Every single book was highlighted in two colours. Underlined in RED meant DO NOT HEED; IGNORANCE!; FOOLS!; UNTHINKING!!! sort of things; underlined in GREEN meant YES!!!; VERY IMPORTANT!!!!; HEED!!!; BRILLIANT!!! He sent me books on just about every religion, political thought, history and literature. Every single book was marked. Every single book marked with my name for my specific teaching. I began to understand how my Grandfather thought and saw the world by his markings in these books.

He was the first person to teach me that learning is a lifetime endeavour.

Now don't be getting all mushy over the brilliance or insanity of this man. There was a reason he was murdered. He wasn't very nice. At all.

(to be continued...)

Friends

2009-06-20T03:54:00.000-07:00

First, I would like to say a HUGE thank you to Carla of Masto Mama chronicles for designing, uploading and giving my blog page a facelift! I love the way her blog page looks, and asked her if she'd be willing to give me a hand or pointers for mine. I'm amazed that she had time for it because she is one busy Mama, but she threw herself into it with full spirit and friendship and...what can I say...I LOVE IT!!!!!!!!!!!!!! Thank you, thank you, thank you Carla.

Our dear dear friends Lesley and Buck arrived yesterday, just as the girls were getting off the school bus. They are Canadian military. Buck is being reassigned for a new tour in Comox, BC. So, on route to their new home at CFB Comox, they stopped in to visit with us. Lesley is going through Law School currently. She's an incredible woman. Hell of a first year that she had studying and being away from Buck. What matters is that they are together now, plan to be together as much as possible AND we wish them safe and happy travels from here to BC. They are driving across country. We are their last 'friend' stop. They are hoteling it hereon in. With their 14 years old cat, Lincoln (meow.) Our best and fondest wishes and prayers for a safe trip and new gig in BC. xooxoxoxox

It's Bronwyn's 8th birthday party today. Her actual birthday isn't until next weekend (when Auntie Tracy and Uncle Phil arrive from England...we are all jaunting out to Winnipeg for a family wedding the following week.) So it's a Princess or 'Bratz' themed party. In light of our dislike of Bratz slutty clothing, we are pushing for the princess thing. I'm up early to bake a cake but realize I have the wrong flours in the cupboard for making a cake. So, am thinking we might have to settle for an ice-cream cake from DQ or something? (I've decided not to sweat the small and big stuff...ohhhhhm, breeeeeeathe....) It's pissing rain right now, and is supposed to rain most of the day today. So, it'll become an indoor party if it continues. We were hoping for sun so that the kids could frolick in the back yard and back 100 acres (for the scavenger hunt!) I should've known the cake thing would go to hell in a handbasket because I already accidently touched the barbie that Bronwyn picked out for the centre of the cake, with a boiling hot oven pan and melted half her hair. Scary how it just dissolved before my very eyes...cinged. I will be making a pass-the-parcel game and maybe we have a big enough living room for Musical Chairs and Musical Statues. I'm tired already. ha ha.

Masto-wise...(touch wood) it's been a really good few weeks. This past week has been pretty good too. Is this what happens when you take your meds properly and do as the doctor tells you? I've had a few crap days but nothing emergency like. I follow the protocol for 'not feeling so hot' too...epi spray (one spray), 50-100 mgs benadryl every 3-4 hours, 50mg prednisone, double up on Reactine (so, 40mgs), Gastrocom/Cromylyn every 6 hours (like normal), puffer if needed and rest; don't go anywhere. I don't want to jinx myself but seriously it's been almost 8 weeks since I was last in hospital with this. THIS is the longest I've gone in a year and half. Can this continue? Oh PLEASE...let it continue. I want to be better.

I realized this week that I'm on tender hooks waiting for the proverbial 'axe to fall'; waiting for the next huge reaction (and trying to keep the drama to a minimum.) This must be causing me some stress somewhere underneath it all? When time becomes too goood to be true, and despite appreciating the good days, we're all waiting...when...when? Reactions usually hit me the hardest when I get my period, which I have right now. This is two periods, so far, without incident. This should be the norm in people's lives, NOT the exception. Not sure how to resolve this underlying fear that something awful is going to happen; that a massive reaction is around the corner. My approach is to take one day, each moment as it comes, but even my husband and kids are waiting for it...we all are. It'd be nice if this was it.

My husband, and my inlaws (better than having outlaws!) think the meds are finally working. Dr. Vadas did tell us they could take a few months for them to really work together AND I have to make sure I take them on time...which I am, diligently. It's weird not bending the rules; or forgetting to take them. The old me would've slacked off big time by now with all these bottles of pills and liquids, but we've learned that the cost is far too high. So, I've been trying it Dr. Vadas' way...and the sceptic in me has been put to rest: no massive reactions. Crap, maybe it's worth listening to your doctor sometimes.

Am still struggling with my weight issues. I know that I don't want to get myself bogged down by this weight gain, and part of me is happy that this has become a focus for me, rather than not breathing or falling down, but all the same...it'd be nice if my body would co-operate with the exercise I do and the careful diet I'm on. It's either take up smoking or reduce input/increase output further. I'm not about to throw cancer sticks into my mouth, so obviously further refinement of what I've been doing is called for. Wish I could run, then this would fall off. Keep the new knees for 5-6 years or blow them out in a year of running? (My orthopedic surgeon warned me.) Hmmmm....So, forward ho...Maybe bellydancing for 4 hours a day would do it?

Well, best make my morning coffee and get ready for the 10 kids we'll have here all afternoon, and the few that are sleeping over. Hopefully we all still have our wits about us by morning...which, is Father's Day!!!!

Thank you to all you Fathers. I appreciate your role in raising our kids, supporting our families and being the backbone. xoxoxoxo Happy Father's Day.

Blogging & Getting REAL...

2009-06-14T16:02:00.000-07:00

Weird. People actually read my blog.

Maybe not millions of viewers or 'hits' but, tonight before dinner my fatherinlaw referred to Kevin's blog (link over there on the right, he has Masto.) and then later, after dinner my motherinlaw nicely mentioned that it had been "one pair of stirrup pants, not piles"...true enough. In my BLECH rant of a couple of days ago, I mentioned how impeccable her and my fatherinlaw's home is and mentioned briefly how she cleverly gets rid of stuff when stuff goes in and wondered why she feels the need to give us her piles of clothes, shirts, stirrup pants (ok, one pair)...and I know why. In my blechdom, I didn't say it, but I know. It's the same reason I take over bags of girly clothes when my two don't fit them anymore, to my girlfriend Tara or to Lori, or to Dominique or save stuff to take to Auntie Pam (who's a foster Mum), etc.; it's the same reason that other women in our community give bags of clothes to me, and me to them...and Grammie's (my motherinlaw) friends do the same for her and for us. There's this really cool 'recycling' thing we all do. It's sort of the right thing to do, actually. And for all of my blechdom the other day...I like it. I just need to get better at GETTING RID of things, or sharing further. I hope I didn't come across as being ungrateful in any way, because that is simply not true. AND, if I can be honestly honest...my inlaws have pretty stellar taste in shirts, plaid shirts and pants (ok, I'm not a big stirrup pant fan BUT she did say we could cut them off into capri's because they are perfectly good white pants.) I can't even begin to count the blessings that my family (which is my inlaws too) are to me. So I'm learning some pretty valuable lessons from all of this 'cleansing' of the house. I'm pretty shocked to find that they READ my blog though...AHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!! (Poppa, that's for you! lol.)

Oh, and I can now see the wood on my desk. Most of the clutter is GONE.

I realize two bags hardly makes us purged per se, but I got REAL with my clothes in my bedroom today. It was painful. I'm too fat for them. I was too fat when I got them; I'm too fat now. So WHY do I keep them? Well...because I dream of being thinner and TRY to be so, and not ridiculously so either. Just want to be back at a healthy weight. But let's be REAL, I'm obviously not doing something right. I posted this on FACEBOOK today too. Suportive and good friends remind me of what I've reminded them of in the same BLECH moments...there are some reasons for this weight gain, weigh holding and, blobdom. I don't drink pop (well, a small glass of something at Grammie & Poppa's on Sundays); I don't eat chips, chocolate or junk (can't even sneak them anymore...BLECH! where's the fun in that!!?!?? Not worth the ills they cause my body); I walk or bike most mornings; I clean the house fairly aggressively most days (and unbelievably, it looks EXACTLY the same crap way it did this morning by the time after dinner rolls around); I garden; I keep moving most of the day; the foods I can eat are so frakin' wholesome and good for you, it's unreal...I eat almost a macrobiotic diet and small portions; I make myself have a small nap in the afternoons now (this way, I make it through dinner and storytime); I don't eat most days past 7 pm. By all accounts, I should be one stunning Mama! But I ain't.

True, the Masto. meds I'm on aren't helping. I'm on 3 drugs that reduce my stomach acid (which must be close to nil or something ridiculous), and I've been on steroids pre, during and post bone marrow biopsy (and whenever I have a flareup, I have to take them) BUT...I need to be responsible for what I can be. And my ass is huge. This is NOT ok.

When I'm not well, I have almost constant diahrea and puke a lot. How come I don't look anorexic???? I know, I know...my body goes into 'starvation mode'. Er...it's pretty obvious, I ain't starving.

Can you believe I'm complaining about affluence? In the old days, a woman of my 'stature' would've been considered 'well fed' and 'well off'....I'm just fat here in Northern Ontario. On my 5'2" frame, 192 lbs (this week...ok, I'm pms'ing so I'm probably really 184 lbs, like I was last week for the bone marrow biopsy sedation) but that is TOO wide for someone as short as me.

Saturday at Home

2009-06-13T15:35:00.001-07:00

It's so nice to be at home on a Saturday. I can't begin to tell you HOW many Saturday's I've spent in hospital. It's nice to be here.

Feels much better to be mostly productive. I sorted my kitchen (I spend enough time in it!) and got rid of PILES of clutter from the drawers and cupboards. Feels good to get 2 full garbage bags of stuff OUT. Bedroom is next. You know all those clothes that I keep intending to get into? To hell with them. I DON'T fit them. And when I DO fit them, I will buy some things that are utterly flattering and don't hide this shell that houses me. It's all just STUFF. I don't need any of it.

Started to get the garden in. However, the sun and physical work got the better of me. I began to shake, and that 'oh dear I'm going to fall down' feeling hit me, I was flushed and ITCHY! So, decked out in my white doctor's lab coat (when I was training to be a Homeopath) that now serves me with it's deep pockets and white reflective whiteness, my dilly hat (from the Winnipeg Folk Festival) and my $400 running shoes with insoles (hey, gotta be comfortable)...the girls and I began putting in the garden. Green and purple runner beans, zucchini's, tomatoes (variations...even though I can't eat them), purple basil, cabbage, english cucumbers, chives and cauliflowers are now in. Lots to put in yet. But, what a good day to begin getting it in.

So thank you.

If possible, please keep my good friend Dawn and her daughter's in your thoughts today. Their community is reeling from the untimely death of a school friend. Fourteen is too young.

Blech

2009-06-12T19:22:00.000-07:00

I'm in a pretty foul mood. I try not to go here. I really try. Because I'm really ugly when I do go here.

Not sure why I'm feeling so cantankerous but, every room in this blasted house that I walk into is a mess. Not a bit of a mess. A flaming, mad, insane, have no control over my life kind of mess. I feel like 'why bother?' because whenever I work my ass off and clean it, purge it, love it, in no time (and because no one else is tending to it except me, when I do) there are piles of crap EVERYWHERE. I'm tired of asking for people to clean up after themselves and I'm tired of not having enough energy to clean up MY shit because I've been so busy cleaning up everyone else's shit. HOW MANY TIMES DOES A MOTHER and WIFE have TO YELL!?!?!?!?!?!?!?!? Or ask. This leads me to the road of guilt trips...and I don't want to bestow that kind of legacy on my children and husband. God knows that I've had to unlearn it.

I don't like the monster I become when I'm this tired, anxious, panicked about the sheer amount of house and farm work that there is to do. Most days, I can balance this out in my head or be reasonable about it. The laundry will always be there. The floors will always need vacuuming. The desk will always need sorting. The beds will always need making. But, at this point, I have to choose planting my garden over purging the piles of accumulation that we seemed to have thought we needed over the past 6 years since living here. We moved here with 3 years of combined accumulation too and didn't have time to sort it before we had to move, so it all moved here too. You wouldn't believe the sheer number of boxes that line our wrap around porch, the driving shed (can't move in there) and now we are starting to use the barn. HOW can a family possibly need this much stuff?!??!?!

One of the problems, I realize, is that we don't say 'no'. My motherinlaw has an impeccable house but that is because she is constantly sorting and throwing out. When stuff comes 'in'; stuff has to go 'out'. It's a good system. So WHY does she think that we need a pile of her stirrup pants, tshirts and plaid shirts? I'm going to have to tell her to give them to GoodWill or Sally Ann or Value Village or the local church. We seriously have waaaaaaaaaaaaaaay too much stuff for a garage sale of our own. It would scare even the most steadfast garage saler.

The porch and our family room is full of computer bits that might or might not work. My husband is terrified of chucking this kind of stuff out or donating it. Speakers that aren't attached to anything just sitting (that I have to dust and move out of the way) or spindles of cd's that aren't sorted in ANY sort of manner in which you could actually find something to watch. Spindles of cd's are ugly. CD's in cases at least stack half decently. This same porch is home to rugs, boxes and boxes upon boxes of books, furniture that we don't have room for IN the house, trunks and boxes of clothes, boots, shoes, and, books. We don't own a single flaming bookshelf in this home and we are ALL bookhogs. It would seem to me that bookshelves might be a priority.

Every room, or space that I walk into on this property stresses me. There is no peace, tranquility, put togetherness, or pride of ownership or design in ANY space that we inhabit. What does this say about us? Or me...?

I can't do this anymore. It's all just STUFF. I mention to my husband tonight that we have too much stuff everywhere and need to get rid of some of it. He asks, like he's hurt and hasn't done anything wrong or that EVERY bit of this stuff is precious, and says "what can I possibly need to get rid of? What do I have?" Fuck man, LOOK around this house!!!!!! The driving shed!!! The porches!!! The barn!!!!!! I'm not saying this is all of his doing but I can't imagine HOW he's oblivious to it!?!?! He brought home a tv from the dump the other week, that doesn't work with any of our remotes, so it's now sitting in front of the freezer on the porch, in a space that I organized, tidied and made ready for 'shop-work' for him. Some power tools and a sturdy workspace, hammer, goggles, other tools hung nicely. You can't move over there now. AND now there's a tv on the floor in front of it all, so you have to crawl over it.

DON'T get me started on the recycling.

OR the 14 ft. cedar boat in the barn with no sails.

OR the paddleboat with the hole in it in the garden.

That's it...it's going. We have no need for THIS much 'stuff'. This is ludicrous. In the event of a pandemic or global or national crisis, we aren't ready. We have stuff coming out the yin yang but no gallons of water or candles. HOW stupid is THAT!?!?!??!

How guilty we've been of buying into the notions of 'more' for the sake of 'more'. Now, it's clutter. And I'm suffocating beneath it.

I'll start with my stuff first.

Bone Marow Biopsy and stuff...

2009-06-08T13:13:00.000-07:00

We have to be at the hospital by 6 am for the 7:30 am bone marrow biopsy. Having had one before with only a little local freezing and going into shock afterwards, I was pretty stressed about having to experience that kind of torture again. However, my Hematologist is knocking me out completely. SO, the procedure will be not only painless during it, but the team of doctors at St. Michael's will take great care not to have me in pain (as it's a Masto trigger...)

I just talked to the Charge Nurse (who won't be there tomorrow) but she KNOWS about latex allergies (a friend of hers has one that is as bad as mine) and says she will flag my chart so NOTHING goes wrong. She asked me if I carried an Epi pen. "I carry 4," I told her. She told me to bring them. Just in case. They should be prepared but JUST in case...this might seem silly in a hospital, but after my last knee surgery in March in Parry Sound (the procedure was fine, but I didn't do so good coming out of anaesthetic and they weren't prepared...) I'm not willing to take any chances either. I'm glad they aren't either.

So, we're heading over to the inlaws for dinner shortly, and to drop the kids off. We have to leave here at about 3 am to get there for 6 am tomorrow. The Charge Nurse told me to make sure the nursing staff are aware and check my chart AND if anything looks even remotely suspicious in the waiting room or anything, to tell them and they'll move me to somewhere secure asap.

Feel like I'm in good hands, overall. It'll be good to get this c-kit mutation over and done with.

2009-06-06T16:31:00.000-07:00

This is the kind of work one pig can do. We put her on the veggie garden (to be...) around May 24th and today, this is the result of her tilling, digging and eating, me giving it one till and a rake to collect the rhizomes (roots of the grassy stuff.) What's even more impressive (to me, anyway) is how we just had to shake a bucket of food for her to follow us back to the proper pig pen that we have her two siblings residing in. We would've had them all in the veggie garden but it was sooo stressful moving the one pig that day, and seriously hard work, that we thought we'd see what one pig can do. It's unlikely ANY rhizomes would've been in the ground if all three piggies had been put there. Looks like veggies will be going in this week. Just as well, we're still getting frost and we're into June!

The Conversations We Could Have...

2009-06-04T20:17:00.000-07:00

The Jehovah's Witnesses come by, usually once a week or so. Grace loves my rhubarb and eggs...so I just share them with her. She's going to teach me to make perogies from scratch. She helped herself to rhubarb yesterday when I was out. Just left me a message on the door. I'd told her to help herself...and she did, obviously. That made me really happy. I've cut, washed, dried and bagged/frozen 29lbs of it so far, so I'm happy to share.

And the eggs, well...it was looking like the new ladies (24 of them, minus the 4 that refused to come into bed and got dragged off by a fox) weren't laying more than 1 or 2 eggs per day. We were starting to think we'd been had or they were defective in some way. Were we doing something wrong?...Like, did we need to bring a Rooster in to sort of get them going???? And, the two eggs we got were teeny tiny. I hadn't read about THIS anywhere. Well, yesterday, I went to collect the eggs. Usually the kids or the neighbours kids (aged 6 and 3) collect them for me. Usually there's one casualty from collection clanging. First, there was a teeny egg right in the middle of the doorway, like the chicken had plopped it out like a fart and carried right on scooting out the coop door. Probably cawing, the way that chickens protest whatever it is that they are protesting, as she exited the building. The crates/boxes the chickens cozy down into to lay, had a few eggs in each mound of nest-molded hay bedding. I walked over, bent down to fetch them and found the ground crunching. I stepped back, then pulled back the bedding hay I'd just stepped on. Crushed eggshell with contents running through the strands of hay met my eyes. Crap. I quickly stepped back further and began unveiling what proved to be four layers of eggs. Neatly nestled on top of one another right outside the doorway to the lay boxes. I found 82 eggs. Crafty buggers, chickens are.

Then there's the pig. Tonight the pig, who's in the veggie garden area, surrounded by a wall of haybales and inside of that, a single string of electric fenching that is charged by a solar panel, got caught in it. She's touched it a few times and squealed in discontent. But this evening, she was so happy to see us that she quite literally hopped over the electric fencing and haybale without knowing her own jumping abilities (we were shocked too) and was soon straddled half on top of the haybale and half way falling off the haybale. I panicked.and without thinking totally shoved her backwards, back into the pen. The thought of playing Catch The Piggie didn't appeal to me at all. Mostly because I've done it and it's tireless, thankless, exhausting and Three Stooges-like. No thanks. She landed in the half-foot space between the haybale and the electric wiring. And got tangled in it. She was screaming because she was being zapped really badly. I screamed because she was being hurt and was screaming! My husband screamed because I screamed and there we were, all three of us screaming. While still screaming we both dove at the pig to help pull her up and out (knowing full well that we'd be zapped too and not really wanting to find out what it feels like) and she jumped herself up and clear of the wiring. We jumped into the garden with her and quickly gave her a rub on her back to make sure she was ok. Soon she was snorting the sounds of content piggie while we scratched her white bristly hair flanking her bright pink skin. It's been warm, pigs can burn. That's why they MUST have a shelter. Her shelter is a pile of haybales with a tarp and old kitchen door slapped on top for weight and weather protection. She loves it in there. Mostly people don't know how affectionate pigs can be. Nor did we until we moved her into the veggie garden to till it over and eat all the grass and roots. We bring her table scraps - vegetarian, our pigs don't eat meat - and she looks forward to it. Sort of Pavlovian. (Boy, that sounded pretentious, didn't it? lol.) We started giving her a back rub when she was scarfing the leftovers, peelings and stale bread. We've learned that, like dogs, if you rub their backs just the right way, they lose control over their bag legs and they drop. She closes her eyes like she's in some kind of heaven, and dare I say...she smiles. She drops her back haunches and rolls right over, giving us her belly to rub. It's soooo funny!!! They are just like dogs. Unreal. Anyway, she was ok. Phew. We'll be adding an extra, higher layer of electric fencing tomorrow. I should post some photo's of the garden when we just put her in it 10 days ago, and then what it looks like now. She was slow going at first, but she's darn near tilled that entire garden over. I'm totally impressed. We are thinking about where to put the next patch/garden ready for next year's planting.

The chickens, because they free range and forage all day, LOVE the work that the pig is doing in the veggie garden. The pig digs up all the dirt and earth, and the chickens forage in the freshly turned over soil for grubs, worms, grit and whatever else they like to pillage. Odd critters are chickens.

So, another day on the farm. I continue to learn things about co-existing with our food (I don't eat pig myself) and it seems to me that I'm becoming seasoned with the seasons around here. The Jehovah's Witnesses always ask me if I want to live forever on a paradise earth? I do, I reply, I do. They ask me if I understand what Jehovah God's plan for us/mankind is? I ask them to look around us and say, that this is it, we are living it. We are God's plan. They ask me if I understand who is the ruler of this system; this "worldly world"? We are, I say, and we're not doing a very good job of it, are we? I know they believe it's Satan. But like Satan (of both the Bible and the Qu'ran), humankind has a choice. (And what are we doing with it?) Then I politely smile and say to them, "You don't think it's co-incidence that we are standing here now having this conversation, do you?" Grace waggles her finger at me, as she gets into the car (you can't talk too long outside up here, the black flies will eat you for appetizer, dinner and dessert and midnight snack if they can help it) and says to me that Jehovah is hard at work in my heart. That's why she keeps coming by. I remind her that she's the only people who come by. They travel in packs of two or three, so I can't say 'person'. "Jehovah loves you," she says as she is helped into the car by her husband of 42 years, "and so do we!" I gently yell back that I thought it was my eggs and rhubarb that she loves, not me. The car door shuts. She opens the window and says, as they back down the driveway, "It wouldn't be so good if it wasn't grown with love!!!" she beams. Yeah, we don't hurry things around here anymore.

So, why don't Buddhists, Hare Krishna's, Muslims, Hindu's, or other Christians stop by too? Oh, the conversations we could have....

Yes it is...Yes, yes it is & Bone Marrow Biopsy

2009-06-03T21:31:00.000-07:00

My Immunologist, in Barrie, sent me to St. Michael's Hospital in Toronto a few months ago. February, to be exact. Since then (yes, same calendar year) I have seen Dr. Peter Vadas (Dept. Head of Allergy and Immunology) several times, and he's referred to me to Dr. Lisa Hicks in Hematology who's now referred me to Anesthesiology where I had the pleasure of meeting Dr. Chen yesterday. (For those of you unfamiliar with Hematology, it's the study of blood which encompasses quite a lot, including cancer and (it seems) Systemic Mastocytosis. ) Dr. Vadas, Dr. Chen & Dr. Hicks are incredible doctors. Aware that they are not Gods but being as learned as possible, they are in pursuit of excellence in their respective fields, they are compassionate, and are trying to help me.

They are in agreement that another bone marrow biospy is needed to do the c-kit mutation testing. This is sort of the FINAL diagnostic test they have for SM right now. While a final diagnosis won't change the course of treatment that they have me on currently, it will offer some peace of mind that no-one's missed anything and that THIS is what is going on with the insanity that has become my body. I haven't mentioned much that they are also testing me for some other disease that is so rare that it doesn't really have a name but is referred to with a bunch of numbers and letters only. This disease is even rarer than Systemic Mastocytosis BUT is curable. No-one has mentioned what the cure is, but apparently it's curable.

If my c-kit mutation test reveals I DO have Systemic Mastocytosis then, the prognosis for cure is grim. However, life IS possible even in the face of feeling like absolute crap. Just have to avoid 'shocking' and anaphylaxis at all costs...easier said than done with triggers like latex, dust, dust mites (those things are EVERYWHERE!!!!), massive list of food that is growing steadily (all the tasty stuff too!), pain, hot, cold, extremes or quick changes in temperature, medications, perfumes, cleaners (we're a Dr. Bronner's Hemp soap, hydrogen peroxide, tea tree oil, lemon, vinegar and water household now), some animals and some silicone products., etc. Especially "etc.". The list is all together too big to note here right now.

If my c-kit mutation test reveals I DON'T have Systemic Mastocytosis, there is a fear that I have some "orphan" disease of my own...because SOMETHING isn't right. I've asked if it's possible that this is all in my head. Apparently, it's not. Not with what my body has been through and experiences. (So,...I'm NOT crazy?!?!!??!)

If my bone marrow biopsy reveals I have this other disease, there's a cure.

So, that's where I was at when we headed south to Toronto yesterday to the pre-op department at St. Michael's hospital. The real meal deal here is that there is a TEAM of doctors working together to help me at this hospital.

Dr. Chen opened the door with my file in hand, introduced himself and said he had read the lengthy file on me, and sat down. He looked at me with pity. Nice pity, if you know what I mean. And then told me that Systemic Mastocytosis is "life-changing". Er....yes, yes it is. I was confused. This doctor KNOWS what my life/our life has become.?! Different. Changed. Altered. Other. Uncomfortable. Painful. "You know Masto?" I asked, confused. Was I really not going to have to try and explain this disease to this doctor and hope that he would believe me that he really needs to call my Immunologist and speak to him about what's going on with me? "Horrendous disease," he quipped, "Life-changing." Er....yes, yes it is.

"I thought I was here to test to see if I have this disease, not that I have it." I replied.

He said he's not an Immunologist or a Hematologist but he's read the file, chances are good I will test positive but we'll see and that Dr. Hicks (it notes in the file) has already spoken to me about this. Yes, yes she has. He told me that Dr. Hicks is a wonderful doctor and she knows what she is doing. I agreed. He said her notes were pretty strong and we need to behave as IF I HAVE Systemic Mastocytosis for this test and anaesthetic because, chances are good this is what ails me,. So precautions, markers and preparations need to be made because this is rare, and serious. Yes, yes it is.

He then said it's an insane disease because it's one disease where getting upset can actually kill a person because sufficiently triggered, mast cells behave in these insane ways in a person with Systemic Mastocytosis. Add this, he went on, that for me, latex is a massive trigger, so that combined with getting stressed or upset can be detrimental in an O.R. SO, they are having me first thing in the morning and will prep the room without latex and let it sit and 'clean' overnight. First patient of the day in that room. SO, their job is to make me as comfortable as possible; I am not to be stoic and am not to permit myself to be in pain (they can help me) because pain is a trigger as the body has it's own stress-response to pain and THAT is massive in and of itself. And, bone marrow biopsies are painful. No two ways about it. Unlike other people who've had or can have lidocaine or local freezing to assist with the perception of that pain, I cannot. All terrible triggers for me. And, have hurt me/created reaction in me before. So, he said sedation and pain management post procedure were crucial to pulling through this well and without incident. At the end of the day, we want no incidence. Agreed.

It hadn't occurred to me that pain IS a trigger.

He said he had a good idea about what medications we could use and not use to sedate me but would check with Dr. Hicks/Dr. Vadas. I told him that Dr. Vadas has a list of medications not tolerated well by Masto. patients. The list comes from Michigan and Dr. Cem Atkin's office. I coudn't find my copy of it (think it might have got left with my Emerg. Room file or Patient File when I was in my local hospital last month for 4 days (well 6 days, if you count the two and half days in and out of Emerg.) So I pulled from the Mastocytosis Society in the USA's website Dr. Maria Castell's Emerg. Protocol for Systemic Mastocytosis and/or Mast Cell Disease and the printout on Anaesthetic on the same webpage. He asked if he could keep them. I said I'd brought them for him. The pages noted their sources. I was relieved he wanted them. He also told me that there's a good chance he won't be my actual Aneasthetist next Tuesday, June 9th, when I have this bone marrow biopsy done, BUT would write a detailed letter outlining what needs to happen with this/with me. He trusts his colleagues implicitly, he said.

It was so nice NOT to have to convince a doctor of the validity of this disease.

I feel so incredibly lucky to be living in Ontario right now, with this care team. St. Michael's Hospital and the University of Toronto have every right to be proud of three of their doctor's. They are doing their best for me. And, Systemic Mastocytosis. I appreciate it.

I was really worried about having this bone marrow biopsy because of what happened with the last one, in October, in Parry Sound. I've written about it in a previous post, so I'll spare you the details. But, I was not looking forward to this test without freezing or painkillers. Wasn't actually sure I would be able to go through with it. I don't say that about much in my life. Never have. But THAT was doing my head in. Dr. Hicks says it would be "inhummane" to do a bone marrow biopsy like that. Dr. Chen said he once had a patient, with Systemic Mastocytosis say that a bone marrow biopsy was like the torture machine on the movie The Princess Bride when Weslely is being, well, tortured and he lets out that primal scream that is the scream to end all screams because it's the cry of man who's lost his true love...THAT is the kind of pain a bone marrow biopsy without freezing, sedation or painkillers is. And even with sedation, Dr. Chen said it would hurt coming out of anaesthetic because there is no freezing in the area. He said that drawing out the bone marrow is like that Princess Bride scream because it's the "core of a person", just like the heart...to touch those things is to "mortally touch or wound a person" and it is excrutiating. So, it's going to hurt real bad afterwards so, I'm not to be stoic. No body or emotional stress over pain. He would order epi, benadryl, ranitidine and steroids on order for post procedure too. He knew I would need an iv line for all of that going in. I am to take my ketotifen, cromylyn and meds with the tiniest bit of water and let them do the rest.

So...that's the deal. I had intially thought going all the way down to Toronto for a pre-op would be a big waste of time and an emotional drain. It was anything BUT that. The nurses who did my physical were gentle, awesome and incredible (had to get nasal and anal swabs because I've been admitted to a Canadian hospital in the past year...swine & avian flu and SARS...thank you. The nurse gave me the swab and said I could go to the loo and do it myself if I wanted. Yes please. So no embarassment, discomfort or lack of privacy. Thank you.) I walked out of there with a sense of calm and trust. My husband remarked, "that went well." Yes it did. Aside from the anal swab. Yes, it did. Worth the trip.

Perfect.

2009-05-28T17:17:00.000-07:00

Had you known me in University, when I was actively pursuing a Theatre Degree, you would know that I was on a quest for perfection. I was determined to leave this planet after giving my best. Personal perfection, intellectual perfection, creative perfection, carnal perfection, and worldly perfection drove me. Even when I succeeded and was commended by external stimuli/people/teachers/lovers/friends/family, I never permitted myself to listen to that praise. I never wanted to stay there. I moved forward as quickly and swiftly as I could, never stopping long enough to take in what good I had created. This same quest in High School pushed me. I was, insanely, on this same quest in my first, and only, year at Senior School in England.. .I was 11 going on 12. There was no sign of this quest leaving me when I joined the Fire Dept., when we moved to the countryside...I was in my 30's. Or had my babies. Or got married. Or continued taking classes. Or worked overseas...in my 20's. I worked hard. I played hard. I thought hard. I rested hard. I ate hard. I dotted all my "i"s and crossed all my "t"s. Then filed them alphanumericalbetically. Then updated my file list. I have no trouble finding things. Perfect.

Having said all that, my desk has always been a mess. A disaster zone. Chaos. Still is. Um, not perfect.

My friend Drea says that I've "...been through fucking hell this past year..."

My Mum tells me that Jehovah has given me this illness because my shoulders are big enough to carry it.

My Father tells me he's worried sick about me. And nearly always interjects that it's Ontario that is making me sick, because this province is toxic. You can't live between Toronto ('Smogville'), Hamilton ('Steel Town') and Sudbury ('the land of Nickels') and not have the air and water affect you. The natural resources are sick. Ergo, I'm sick.

My Husband tells me that I need to make the necessary adjustments to relearn to live my life.

My Immunologist tells me that I need to make the necessary adjustments to relearn to live my life.

Drea points out that I no longer have to work, live on 128 acres of land in the middle of nowhere, can take my kids swimming for free in the lake ANY time I want to (weather permitting, of course), that I have all day to myself, that I have a man that loves me, two gorgeous kids, family and friends that love me and whom I love, and don't have to answer to anyone. Aside from the whole illness thing, she quips, your life is perfect. Drea does intellectual stand-up comedy: Spoken Word. She's brilliant at it. I'm a fan. Perfect.

A different person would take the time that I now have, sit on their arse on the couch and watch tv all day, while nibbling every so often and going for a pee. I have a great deal of trouble doing this, depsite wanting to sometimes. That drive for perfection speaks to me really loud most of the time. "WASTING TIME!!!!!! DO SOMETHING!!!!!! USE YOUR TIME WISELY!!!!!!!!", etc. Some of you may be familiar with the "etc.s" too.

I'm not sure where this drive comes from.

What I do know is that sitting too long on one side of the fence isn't good for you. Nor is the polar opposite. Seems to me, that some sort of balance needs to be present.

You can't be this driven and healthy too. Ergo I'm not.

I'm not saying that the insanity that I've called my life for the best part of the past 20 years is responsible for reaping some serious physical and emotional side-effects. But it can't have helped.

My husband has said to me on more than one occaision, "Nothing is ever good enough for you. You're never happy." In various tones and circumstances. THIS is usually what our arguments are about. When we have them, which, thankfully, isn't very often, it usually boils down to that. Once every 2 or 3 years I am given a sobering dose of someone else's reality and told that nothing he ever does for me is good enough. Until this past year. He's easily said it to me 7 times. In one year! I can't be responsible for why he's driven to have a woman in his life that pushes these buttons for him but I can be responsible for not being that person, because it's not healthy or balanced or ok. And, I can be responsible for not pushing myself to the brink of death 'proving' myself to the world. Quite frankly, it's not that interesting. Nor am I. Who cares if I prove anything? No-one but me. Perhaps if I give myself permission to relax and appreciate things as they are, I can enjoy the fruits of my labour when I take on projects or challenges...instead of rushing and pushing through them so they are over and I move onto the next thing. OR WORSE, I throw myself so hard at something, that I burn out and never finish it. How many unfinished projects or 'things' do we human beings have?? Don't get me started on the guilt associated with not finishing things...lol.

What has happened is, despite my new limitations, that I have continued to try and push forward, in the same way that's always worked for me before. Really hard. And am no longer reaching my destinations...not even close. Ergo, there is a sense of failure.

This sense of failure is all too familiar to me. It's not just reared its head in the past year or so. Systemic Mastocytosis and a life threatening latex allergy haven't created this. I can't remember a day as a child, or teen, or young adult or adult that I didn't feel like a total failure. While every one was sharing accolades with me, praising and enjoying my work, stories, food, hospitality, singing, teaching, listening, sharing, theatre, children, marriage, fire department, yoga, running, fraternizing, whatever...I was sure it was never good enough, ok, or worthwhile. Or that I was. (The guilt over not receiving the love, praise and offerings of those people kind enough to share their time with me is another discussion altogether...) I never savoured a moment of perfection, in those moments being perfect as they were.

If I may be permitted to observe my own Self for a moment...this is pretty sad. Not to mention, unecessary.

It's even sadder that it's taken my world becoming infinately smaller, through illness, for my appreciation and love of my Self to begin growing. That might sound a bit new agey, but there isn't really another way to explain it.

Tonight, despite the downpour soaking my farm and my hair, I looked around me and was aware that my life is already perfect. I just haven't taken the time to "smell the roses" or Be right where I am, as I am. All this time I've spent searching, driving, proving, and trying to be happy, I just needed to BE happy. "Do or not do, there is no try."...says Yoda. It really IS as simple as a CHOICE. And I haven't always chosen this.

The need to rush to the next minute or moment or thing to do went "POOF!" and here I am, findng that time (an illusion) has slowed right down to a pace that feels good. Perfect. Why didn't I let this perception in, years ago? Hmmm, chances are good that I wouldn't have recognized it. How would I know NOT to speak unkindly to myself, if I had no idea that I was speaking unkindly to myself (and possibly others?) Thank God we have the ability to learn.

So that list of unrealistic expectations that I have of my Self needs to be rewritten or thrown out. Imperfect perfection is what I am, and that feels good. (Do I get to thank Adam and Eve here?)

If anaphylaxis, Systemic Mastocytosis and freaked out cells have brought me to this place, then I am grateful for it. I wouldn't wish it on anyone. And, I wish I didn't react to the world we live in the way that I am BUT, I've arrived at "I'm alright" contentment...so thanks.

C-kit Mutation testing et. al.

2009-05-26T06:39:00.000-07:00

The call came yesterday. My Hematologist is going on mat. leave in early July (with twins, it turns out) and wants to do the c-kit mutation testing herself. Apparently, I'm an 'interesting' case...oh joy. So pre-op will be June 2nd. And they have to call back to confirm the June 9th procedure date. They need me in first thing in the morning for the procedure to make sure NO LATEX is in the operating room. I'm being put under for this procedure. With my history of shocking to local anaesthetic and the post-op hypothermia and anaphylaxis suffered in March with my right knee surgery...they don't want to take any risks.

I'm vaguely relieved that I won't have to be awake for another of these bone marrow tests. Equally relieved that my Hematologist/Oncologist (Dr. Lisa Hicks of St. Michael's Hospital in Toronto) thinks it's inhumane to do a bmb on someone without freezing or painkillers. She also wants a really good sample, so this is the best way to get it. We were hoping to co-ordinate my impending hysterectomy (not exactly thrilled about having to have this either...) with the bmb but Gynaecology at St. Mike's is booked up. The earliest consult I could get in for was June 22nd. It's gonna be a busy Toronto or St. Michael's month...

I'm scared to write the next bit. I want to jump for joy that it's been almost exactly a month since my last serious series of anaphylactic reactions (and subsequent 4 day stay in West Parry Sound Hospital - who totally didn't know how to handle me...sigh...) but I'm scared I might jinx myself. Everytime I've ever written that I've made it to such and such time landmark for no reactions, I have one within hours of writing it and then end up saying, "I spoke too soon..." So for now, I will write that I'm reserved about writing such things.

Overall, it's been a pretty good month. A few 'flare ups' we call them in Masto world. Not bad enough to be full anaphylaxis but enough to be uncomfortable, painful or debilitating. Had to use my new epi-spray (available over the counter in the USA but to be used with caution) about 4 times this month but it's better than using epi pen and calling in the big guns. The spray got me over the hump, enough time for drugs (Benadryl, Ranitidine, Reactine, Cromylyn, Ketotifen, etc.) to kick in and works REALLY quickly. So, I consider this a plus.

Have also kept myself on a super strict diet this month. This morning, I broke down and asked for a Tim Horton's French Vanilla, Half Decaf BUT my only deviation. It's been dairy free, mostly gluten free, meat free, cruciforous vegetable free, and been napping and resting sufficiently. Here I am with my period and doing ok so far. Usually I'm in hospital with my period because I flare up SUPER bad during this time of the month. Not unusual for Masto women, apparently.

Having said all that, I've not escaped the dire bone pain that comes with this disease. IF this is the disease I have. Ergo the c-kit mutation testing in the next 2 weeks. Dr. Vadas, my Immunologist (also at St. Michael's) and I have agreed that KNOWING for sure, is the best way to go. Because on the off chance this ISN'T SM...we need to know so that we can start looking elsewhere or realize that I'm the first of some sort of something else...however, I present like SM, so it's probably that. We'll see...In the meantime, I've been in incredible pain this month. I don't moan about it much (except to Antony) but it's bad. Night time is the worse. Sleep is...difficult.

My gut has been up and down too. But overall somewhat better. Could the Pantaloc be making some sort of difference? I'm on that now too since giving myself a hiatus hernia and stomach bleed through all the allergic coughing and puking.

I've been taking FLORADIX liquid iron and B-vitamin supplement too. It's the least aggressive of all iron supplements (in my humble opinion) for the body. There's NO constipation with it. It's made from natural sources, and doesn't taste too bad either. So, I'm wondering if this is making a difference in my overall energy levels? The dark rings under my eyes are improving. Hoping to have those mostly gone by the time my cousin Heather gets married. I'm supposed to be MC'ing the reception and I don't want to look like a bag of death. Am trying to keep myself as healthy and as strong as possible for this trip out West to Winnipeg at the end of June/beginning of July because this wedding is very important to all of us. As all family weddings should be. I don't want to let Heather and Julian down. That means taking precautions now, and then.

My hair continues to fall out. Anyone else suffering from this? I used to have such a thick and lucious head of hair. Now it's brittle and falling out far too much. Advice? Comments? Thanks.

It's nice to have a 'normal' sized tongue in my head for once. So for this, and not being in the hospital and flat on my back in bed ALL day, every day, I am utterly grateful. xoxoxoxo

House & Farm work

2009-05-16T10:32:00.001-07:00

How is it, that when we have guests coming to stay with us, I am able to clean this house in ways that I want to clean it everyday but just can't muster the muster to do so??? It's 1:30 and this whole house (except for our bedroom) looks exactly the way that I like it. It hasn't looked like this forever....I wasn't fussing either. Just going from one room to the other cleaning, sorting, purging, arranging, making, decluttering...it was all so easy today. I've even got dinner almost done. And dessert. No losing of tempers or getting cranky. Think I might have a nap.

We had another 24 chickens arrive yesterday. They aren't sure about where they are...can't imagine the journey that's brought them to us. They all look shell-shocked. However, they all look super healthy and brown with slick looking feathers. Unlike our other 24 that were free from a egg laying mass production facility. They consider these ladies too old and redundant to keep. They still lay eggs, perhaps not every day but most days and keep us with a steady supply of eggs as well as keeping all the bugs and slugs out of the garden.

The 24 ladies that we've had this past month are used to the routine around here now. In the morning I let them out of the coop and they spend all day clucking around the yard foraging for slugs, worms and other bits of whatever it is that they ingest. Whatever it is, their yolks are super yellow. We have no rooster, so there's never ever any fear of fertilized eggs. Then, around 5pm or so, I go out with a big bucket of grain and oyster shells and kitchen vegetable scraps, shake the bucket and they all follow me, like I'm some sort of pop star, up to the coop. In lieu of shrieks of celebrity status, I get clucks and bkrrrp's. They all follow me into the coop where I deposit said food in the metal feeders. I chuck a bunch of it in other piles on the floor of the coop...they like to forage and it offsets any internal warfare from the avian masses. Then I do this all again with water. We collect rain in barrels for them.

The pigs are getting bigger. Starting to get jowly actually. One of them still jumps like I'm prodding him with an electric stick every time I go in, but the other two are used to me and are mild mannered. They eat whatever slop we throw at them. Lots of garden and vegetable scraps mainly.

We test rode Pal, the horse we are thinking about getting yesterday. The girls rode him bareback and without reigns or halter for a bit. Then we put a halter on, just to move him around with a bit more ease. He's so easy going. This could be the right horse for us.

Ok, my Grandmother, Uncle and his wife are coming for the weekend, from Kitchener...that's about a 4 or 5 hour drive usually. It's pissing rain, so crappy weekend weather. And, it's supposed to SNOW tomorrow!!?!?!?!? in May!?!??!?! Anyway, have to get dinner finished, and help my daughter finish her cake. It looks and smells great.

Have a safe and happy long weekend everyone!

The Farm

2009-05-14T21:06:00.000-07:00

I've sort of written before about where we live. We bought an old dairy farm about 6 years ago. Some thought us crazy. Some thought it made sense.

We've loved and hated it, but right now we're trying to do what it is we set out to do when we bought the place...grow our own food; raise our girls in a place where they can learn about more than latch-key kid-dom, after school tv, video games and the barrage of other personal entertainment units.

SO here are some photo's I took of our life from this past week...

Solace

2009-05-05T07:56:00.000-07:00

I realized yesterday that I haven't heard the birds sing since I was about 6. My last conscious memory of listening to the birds is a warm afternoon at Harefield Infant School. A warm breeze floated over my blue and white checked dress (that my Mum made for me.) The dirt was dry. Our class was playing right before story time, which we were going to have outside today. Jumping from small stone to small stone in the dry dirt, I was listening to the sounds of summer and the courting calls of avian critters that I pretended were speaking to me. "This way...." one would call. "Over here..." another would reply. I wanted to play with them all. I wanted to sprout wings and fly. I'd be a blue bird, the same colour as the baby shade in the blazing afternoon sky, with a white cloud of feathers on my chest.

My garden affords me this gift. The gift of song. The gift of human silence. The gift of memories, long since forgotten. wow.

To Do...and Reflection on What was...

2009-05-02T21:30:00.001-07:00

This week coming, I have a few things to do.

I need to get a hold of my first Immunologist, in Winnipeg, to see WHY her secretary can't pull the abnormal tryptase/24 hour urine elevated histamine test results that got the doctor talking about the possibility of Mastocytosis in the first place. I need to call Dr. Vadas and let him know what happened this past week. I need to call Dr. Stevens, my family GP, to book a followup to being in hospital appointment (have to be seen at the hospital in Ambulatory Care because I react in his medical office facility...they still have lots of latex and dust.) I can't even begin to think about the hysterectomy I'm supposed to be getting done.

Dr. Vadas says he just needs to see ONE, just 1, set of these abnormal test results because my body has been reporting 'normal' levels since. Despite all this 'shocking' stuff. I KNOW these results exist because when I went to see the first Hematologist/Oncologist, she was in receipt of them and told me that she didn't think we needed to bother with a bone marrow biopsy because my clinical history and these test results were as conclusive as she needed to diagnose indolent Systemic Mastocytosis. A positive bone marrow biopsy, in her opinion, wouldn't change ANYTHING...not how we manage this disease or how frequently I will continue to 'shock'. She suggested, at this point, that I return to the Immunologist and have further tests done to determine actual 'triggers' for me (some of which, we knew...as in, latex, bees/wasps and various foods.)

Which I did.

However, Dr. Hicks (Immunologist) didn't agree. So, she referred me to yet another Hematologist/Oncologist. Six months of further shocks, hospital visits, hospital stays and experiencing the boundaries of my world getting smaller and smaller with each reaction. She put me on the following to try and ease the frequency and severity of these reactions:

10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.

Had the bone marrow biopsy done in October 2008. Abnormal test results were found in March 2008. First Hematolgist was seen in July 2008. Second Hematologist was teleconferenced and seen in Sept. 2008.

I stopped taking the aforementioned meds. after 4 months of use. I saw very little difference in terms of improvement in either frequence or severity of reactions. With the exception of Reactine...for the first time since I was about 17, my sinuses were no longer inflamed, stuffed or infected. I could breathe clearly through both nostrils.

My family doctor, after yet more anaphylactic reactions and a 3 day stay in hospital in November 2008, thought we should see an Immunologist closer to home, in our own province. So, I was referred to Dr. Fischer in Barrie. I received an appointement to see him April 2009. However, the week before Xmas 2008, I had two anaphylactic reactions back to back, a mere day or so apart...so I called Dr. Fischer's office to see if they could put me on a cancellation list. When I explained to the secretary what had been happening, she spoke to Dr. Fischer and I had an appointment to see him the following morning. So, three days before Xmas, I was in his office at 9:00 am.

He had all my notes from my family doctor (who had requested all records and test results from Dr. Hicks in Winnipeg - we were there 8 months during 2008) but the abnormal tryptase/histamine wasn't there. Odd. He put me on a regime of:

10 mg Singulair, taken before bed, daily.
150 mg Ranitidine, taken twice daily.
20 mg Ceterizine/Reactine, taken before bed, daily.
Salbutamol puffer, taken at first sign of respiratory distress. 2 or 3 puffs.
Benadryl, taken ever 4 hours for 5 days, post reaction.
50 mg Prednisone, taken 1 x per day, for 5 days, post reaction.
Epi Pens x 4, to be carried at all times. Use one, call 911. Use second dose if symptoms return, and so on.
10 - 50 mg of Doxepin (formerly used as an anti-depressant but they discovered it wasn't particularly good at this, and that it was fabulous as a Mast Cell stabilizer.) I was to start at 10 mg, see if it helped, and if not, proceed to 20 mg, and so on. I ended up on 50 mgs, taken before bed.

I saw Dr. Fischer two weeks later in mid January 2009. I had suffered two more anaphylactic reactions, despite avoiding all known triggers, and as per his advise, eating a low-histamine diet (no chocolate, alcohol, potatoes, tomatoes, shrimp, etc...) I was no longer going anywhere, except to my friend Lori's house on Friday night's for 'game night.' (Her and her husband had taken great pains to de-latex their home.) He thought we should send me to Dr. Vadas who studies Idiopathic Anaphyalxis at St. Michael's Hospital, in Toronto (Canada.) They would arrange for an appointment.

My husband and I saw Dr. Vadas on February 18th 2009. After a 3 hour intake, he ordered tryptase blood work (that came back normal "3") and told me to stay on the same regimen, minus the Doxepin. He said Dox was of little use. Unless I found it helpful with depression...which I didn't. He wanted to see me in six weeks, unless I had any reactions - in which case, I was to call the office and report to him. I had a big one four weeks later, despite being virtually housebound. I also had two knee surgeries during this time. I had another reaction the day before we went to see him for followup. He added 1 - 4 mg of Ketotifen to the regime. Start at 1mg, work up to 4mg. And wanted to see me two weeks later.

I suffered 3 more reactions before seeing him again mid April 2009. He added Gastrocom/Cromyln/Nalcrom, taken 4 times daily to the regime.

And here we are two weeks later...and I've had numerous flare ups, and 9, yes count 'em, NINE anaphylactic reactions since.

Where I AM seeing improvement (in a HUGE way) is in my day to day functioning. I'm no longer suffering with massive weakness (all over body weakness), the shakes, headaches, sinus pain and the relentless swings between constipation and diarhea....and I'm no longer flushing, getting tachycardia, all over itching, watery and itchy eyes and nose, vomitting, nausea, weird rashes/hives/bumps/spots that appear and then go down days or weeks later, blackouts, and a sense of panic several times a day. Nor am I exhausted when I wake up. Nor am I grumpy and in bone pain agony all day, every day. My tongue can, and does, look and feel 'normal' sometimes. I'm able to do more in my day, even if it's at home.

However, I'm still shocking. The follow up to this is bone pain, diarrhea, stomach pain, intermittent flushing/itching/rashing/hiving, puffy and sore tongue, vomitting, nausea, weakness, body vibrations/tingling and blackouts, tightness in the chest, pain in my right lung, and don't 'feel right.'

I've lost 9lb this past week. Not exactly how I want to lose weight, but it can't be helped. That stomach bleed and hiatus hernia seem to have done a doozy on my system. I've got lots of flub on me, so 9lb isn't a huge deal. And to be honest, it's nice to see the scale go down because I've been trying (eating and exercising regularly) to shift this weight but it's had no intentions of shifting. Until now.

And since it's 1:30 am, I'm guessing that my old friend insomnia has returned for a bit. Ugh.

This blog entry has been monopolized by this health crap. I have LOTs of other things to do in my life...have two gorgeous girls to play with and look after, garden to tend to, pigs and chickens to tend to (omg...I hope I'm not reacting to them!?!?!?), rooms to paint and junk to sort out and get rid of (purging!), so my life isn't entirely about this illness. Although, it takes a pretty massive front seat these days. I look forward to the day it doens't.

Hell on Earth, or at least Parry Sound

2009-04-30T20:13:00.000-07:00

I'm home from the hospital, where I've been since Sunday. Technically, I went in Sat. night, but they sent me home Sunday mid-morning, to return a scant 5 hours later in full anaphylaxis again. Only this time, I managed to get a stomach bleed with it and now have an hiatus hernia from all the wretching/gagging/coughing/puking. Since Friday night, I have suffered 9 full anaphylactic reactions. I blacked out with the reaction on Friday night so after the epi, went to bed instead of calling 911.

Lucky me, I got to take TWO ambulance rides this past weekend. And they had to shoot me up with additional epinephrine on route.

I think I spent most of Monday curled up in a ball in my hospital bed, tears involuntarily streaming down my face, soaking my blue hospital gown. They gave me morphine, benadryl, gravol, pantoloc, some other stronger steroids and ranitidine via IV. The pain ebbed. My self-beratement lingered.

At our local hospital, they have a doctor on weekly rotation who handles ALL the floor patients. This week, it was my lucky week. I had a doctor who refused to return Dr. Vadas' phone calls to the hospital because he didn't "really feel speaking to him will shed any light on the situation, we have it under control" and "I have 30 other patients on this floor, I don't really have time for this call." He'd never heard of SM or Systemic Mastocytosis, nor did he think it real. He wasn't interested in learning about it either. Nor did he think we needed to follow the post reaction protocol of Benadryl every 3-6 hours; prednisone and double up on reactine (super simple and effective things to take and do.) He didn't think it possible that I could be having an allergic reaction THIS continous. He thought I MUST have an ulcer or some kind of gastric otherness going on. Nor did they think I needed to take Ketotifen and Gastrocom/Cromylyn (because they didn't have it in the hospital and had never heard of it.) Ergo...I rebounded...and continued to. Nurses were at a loss as to 'what' was setting me off; and this doctor busied himself with prepping me for a gastrectomy and/or an endoscope. Thank GOD the surgeon who was to do these procedures said he wouldn't do them on someone in anaphylaxis rebound and thought I'd been through quite enough.

So then this doctor decided to do a barium xray. They came to get me as I was coming out of another anaphylactic reaction (nurses shot me up with benadryl and epi), and I was wheeled down to xray puking my guts up. Ummm, the joys of 'allergic foam' and bile.

Add to this that because I'd been admitted to their hospital in the past 6 months and admitted to another Canadian hospital in the past year, I had my nose, mouth & rectum swabbed and was in "isolation/quarantine" until the tests showed I had neither SARS nor Swine flu. So, EVERYONE had to gown up (something I lovingly came to call as "the yellow gown of shame"), mask up, glove up before they came into my room, and I was taken down to xray, in the same gear, trying to throw up through a mask that I wasn't permitted to remove.

Needless to say, when we arrived in xray, I had a total meltdown.

The Radiologist took me seriously. And, refused to shove barium down me until we cleared it with Dr. Vadas. It took about 20 mins, but Dr. Vadas spoke to this doctor and told him that he'd like the barium xray done BUT they must have someone standing by with epi. So, it took another 20 mins for them to find my nurse, (an unbelievably gorgeous young man named Nelson - "Hi Fiona, I'm your nurse" [gahhhhhhhhhhhhh, WHY do I get the gorgeous man-nurse when I've been pushed through several bushes backwards, have no pants on, haven't bathed for two days, am about to drink some barium crap that will then cake to my lips making me look like Al Jolsen ready to sing "Mammy" and am swollen up bigger than big because of the monster steroids they fed me the day before!?!?!?!?]- who arrived with epi.) The xray with barium was fine. Good job I do yoga though...some of the twists and positions I had to get into would be difficult for some folks. It showed an hiatus hernia as the source of the stomach bleed, this newly acquired pain in my chest/back, unbelievable gut pain and burning (acid reflux is unbelievably painful in this manner), as well as the continued vomitting. Interestingly, the lower and mid gut pain totally subsided whenever they shot me up with benadryl (leading me to conclude that this pain was allergic inflammation pain) and came back with a vengeance as soon as the benadryl wore off.

The arrogant doctor came in yesterday morning and told me that I'd be released because they didn't really know what else to do for me (the kitchen had no idea what to feed me either.) The stomach bleed was under control and wasn't caused by an ulcer but rather from this hernia I've acquired, and it looks like I must be suffering with a serious allergic reaction.

No kidding...

So, he advised me to go home and follow the protocol that my specialist had me follow and to come back in if I couldn't breathe or had further serious anaphylaxis. He called in a prescription for pantaloc to help with the hiatus hernia and the reflux I'm suffering because of it, and percoset for the pain. Told me to take it easy eating and drinking. I hadn't eaten since Sat. morning. Been on IV the whole time. Couldn't keep water or ginger ale down, or pills...so why eat?

Add to all of this too, that I got my period during the first night of my admission to the facility. Seems like I get the bulk of my reactions during or right before my period. Dr. Vadas says there seems to be some sort of link between flare ups and our hormones.

I was so glad to get the hell out of there because I can take better care of myself.

And, my epi spray arrived today from the USA. Dr. Vadas wants me to have this but be careful about using it. He thinks we need to cut the response time down as much as possible.

So, I'm exhausted, home and happy to be alive.

I hope I never have another 9 anaphylactic reactions in a 5 day period EVER again.

It's Raining, It's Pouring...when do I get to be Normal?

2009-04-22T20:53:00.000-07:00

Had 4 incredible days. I felt almost 'normal.' Then today my bubble burst. Began with itching, then gut pain, running to the loo because of the soup leaving my ass, spots under my skin on my chest and face began to surface (and now will stick around for a few weeks, making me look blotchy...and they'll continue to itch.) It's not worth scratching because there's never any relief. I'm not sleeping AGAIN...and it's pissing rain outside. I love rain. Why doesn't it like me?

I can breathe, thankfully.

Headache hitting me. Bone pain is unreal...especially in my legs and back. That place in my lower back, right side, was hurting this afternoon. I should've listened to it. Kidney? Adrenal gland? Gall bladder? Ugh...

It's my own fault. I went to the school (friend had a kid emergency), went to the hospital with them, then to WalMart and the Dollar Store for treats for this kid. I felt fine at the time. Almost normal. Tongue got fat but no distress.

I'm so tired of 'triggers'. I'm so angry with myself for being foolish enough to believe Tara that if I just willed this all to go away, that it would. I wanted to believe, I guess, that I could be in control of THIS, not it in control of me. I'm an idiot. For a scant 4 days, I almost believed it too.

What we know, now, is NOT to ignore these early warning signs. Pre-cursors to bigger reactions and imminent death. So now I have to be hyper-vigilant.

Tara exclaimed yesterday that she missed me, and that she "misses this!!!" (us, hanging out, with only her and her children to be concerned with, shopping, me helping her...) and for a scant few days, I bought into it. I guess the rotten truth is, my 'illness' is ok as long as it doesn't affect her. I hate this observation that has been made clear.

I need to take care of me first. Today and yesterday, I totally cared for other people, before caring for me, and here I am at just gone midnight in unbelievable bone pain, nauseated, diarrhea, itching like hell (when the Benadryl wears off) and no-one else is bothered. I feel like a selfish child right now. I want to blame Tara's insensitivity to all of this, but the truth is...I'm the only one in control of me. And, like my mother before me, I put the needs/wants of others (friends) before my own safety these past few days...and THAT is idiotic.

Lesson learned. Fortunatley, before Epi and a trip in the ambulance. Hope to keep it this way.

My husband is turning 40 May 1st, so I'm trying to plan a birthday party for him. It'll have to be here, at the house. What I like about parties is, I'm always totally happy if only I/We show up. If anyone else shows up, it's like gravy. Really good gravy. So, gravy would be nice. And if not...we'll have our own party. [insert warm fuzzies here.]

In the meantime...loads of love to Dawn and Emma who are having crappy Masto days, especially today. Lots of warmth to Carla and her family as they readjust to life after being in the hospital for 19 days straight with little Gavin.

As well, congratulations to The Canadian Mastocytosis Society for moving forward into awareness and the public domain. Carrie, who started this whole thing is an incredible woman, who's devoted many many hours of herSelf to Masto. awareness and support. Heck knows, we could all use it. She's a very humble woman too...so being grateful for her and her work is all the more rewarding. Thanks Carrie!!!! You're awesome!!!!!!

To the rest of you/us...be careful, and much warmth to you for reaction free days.
oxxoxo
Fiona

Complacent, Bothered and Bewildered...

2009-04-19T19:27:00.001-07:00

My friend Tara's comments about my 'illness' being a mental matter have taken up all together too much time in my mind, mullings and memory. I shouldn't permit this. So I will thank her for providing me the opportunity to re-examine my feelings and thoughts about HAVING an 'illness'.

What I did become aware of this week was the unmistakable pain present in my ascending colon region. I have pain in the front AND in the back of this area of my anatomy. My Hematologist gave me a serious examination the other day and asked me if my gall bladder has ever been looked at? Scanned? Issues? No, no, no. The pain there is UNREAL. On par with the same kind of pain I had when my appendix went (the week before our wedding.) Brings tears to the eyes involuntarily when touched...and when I rest my arms on my gut...and when my children sit on my lap (don't want to be touched there.) Wonder what THAT's all about? Another thing to note. This is where my gut pain resides.

So, the other day at St. Michael's hospital, I met my new Hematologist. She's super nice, super pretty and super thorough. I thought I was going to have a bone marrow biopsy. It's been pushed to April 29th now. My doctor was concerned about doing a bmb without freezing. She called it 'inhumane'. Her and my Immunologist want my upcoming hysterectomy moved to their hospital from the much smaller small town hospital I was supposed to have this done at. They say that they can handle potential complications there much better than this other hospital because they understand the nature of my allergies/mastocytosis. My new family doctor agrees too. I met him on Friday. He wants to see me once a month to stay on top of what's going on. My Immunologist is not going to be happy that I had another reaction on Friday night. And I was having SUCH a great day.

I hope I don't become complacent about this whole health thing. But it's hard to listen to the broken record that's become your life with a life threatening latex allergy and this whole mastocytosis picture.

Bone Marow Biopsy and stuff...

2009-04-15T07:58:00.000-07:00

First, may I please ask that you continue to keep Dawn and Gavin in your thoughts, hearts, minds and prayers. Gavin's big sister, Chelsea is having an understandably hard time with her Mom being at the hospital this past two weeks and wants them all to be home together. Dawn...I just want to wrap Dawn and her family in a big love blanket, take away all this health crap and enjoy a 'normal' day together...one day....

Also, one of the most amazing people I know and love is coming to terms with her father's suicide/death right now and, while I can't possibly know what it's like to lose my parents (her Mom died of cancer a scant couple of years ago...), I want to ease her pain and suffering and loss. Drea, I love you. xoxooxoxo

It's really odd when you become your own administrator. Two weeks ago I saw Dr. Vadas in Toronto, and he says that he is not in receipt of the abnormal tryptase/24 hr catecholamine (elevated levels of histimine) results that were done in Winnipeg by Dr. Hicks's Immunology office. Weird. All my other stuff had been forwarded. It has taken me two weeks to get a hold of an actual person...and they wouldn't forwarded those results to Dr. Vadas because I have to sign a medical release form, apparently. I've signed one for Dr. Fischer's Immunology office in Barrie...so I asked if they could send it there. I called Jane, Dr. Fischer's INCREDIBLE administrator, and she said she'd watch for it, and send it on immediately to Dr. Vadas. Once again, she had my file on her desk. She says I'm a 'special' patient. We joked, NOT the kind of 'special' a person really wants to be. So...FINALLY, that should be sent on...

I see Dr. Vadas again tomorrow. I've had one Epi-breakthrough reaction in the past two weeks, and days of facial and throat swelling. This subsided yesterday FINALLY. I feel almost human today...which is amazing!!!!

Bone marrow biopsy with another Dr. Hicks in Toronto, at St. Michael's tomorrow morning. This time for the c-kit mutation. No-one has told me whether I need to be on or off meds for it; no-one has told me anything except they know about my severe latex allergy and to show up. I'll need to tell them I can't have lidocaine or xylocaine or painkillers...as I go into shock. Mind you, I guess if that happens, I'm in the right place???? Ugh, NOT looking forward to this. I have managed, pretty much to put it out of my mind. But, it's looming, getting closer....I don't ask for people to think of me very often, but please, if you could tomorrow morning...that would be grand. I'm scared. This test hurts soooooooooooooooooo bad; and is super unpleasant (excrutiating) and...I wouldn't wish this on anyone.

Dawn and Gavin

2009-04-12T06:18:00.000-07:00

Please keep Dawn and Gavin in your thoughts, heart and minds...they are both in hospital suffering with Masto and gut-related symptoms, and have been for a few days.
xoxoxoxo
Fiona

Talking

2009-04-10T15:10:00.000-07:00

I had a conversation with my friend Tara yesterday. She told me that by talking about my illness, I am manifesting it. Apparently her and the ladies at Playgroup were discussing me on Wednesday. They want me to be well. Tara is of the mind that by talking about what ails me, I am making it happen in my life. She says that my dad is right when he says that I've been ill ever since I moved here. Because I have tried to be too much to too many people too much of the time. She says that I need to take care of me, and that includes not thinking about what's wrong with me all the time, looking forward with the assumption that I am well and healthy.

I do believe that thoughts become action. And, I have had a LOT of conversations with myself, grappling with this very issue: am I making myself ill? My Immunologist says I'm not. And, he says I'm not imagining this...this is real.

So, I've been busy thinking about my garden, tending to my new chickens, planning the produce for the season ahead, planting my plugs full of flowers and seeds that need to be started indoors, writing letters to people I love and care about, playing WordPath/PathWord on Facebook (careful...it's addictive!) and telling myself how much I love me.

However, the reality is this...I've been struggling for about 4 days, on and off, with what my husband is now calling "masto symptoms"...flushing, itching, tongue swelling, headache, insomnia, bone pain, diahrrhea, nausea, puking and this new one...face swelling. I woke up this morning with a round, puffy, edema-like face. My cheekbones weren't seeable and I looked liked I'd gained 30 lbs around the face overnight. Don't think about it, I told myself...or you'll make it worse. So, we all trekked over to Barb's Sugar Bush for maple syrup production...with all the snow this past week and freezing, the sap was running full hog today. We stoked up the fire pans. I had a coughing fit after hauling 9 buckets full of sap. My husband told me to take it easy and I was relegated to sap drainage into the big barrels (to then be scooped into the evaporator pans). Many hands make light work. So there were neighbours and Barb's cousin helping out. It was fun. I puked in the bush. Fatigue washed over me. But, I focused on the gorgeous blue sky, the sap at hand and the Bengali Spiced Tea that was brought out from the house. It was a perfect morning. Aside from not feeling so hot. Even Barb said I didn't look right.

We came home. I puked some more. I had a raging headache...the tylenol and subsequent percoset that I had taken, took the edge off, but it was present. Migraine? Took a Zomig. Laid down. Woke up to a fat tongue that I was having trouble speaking with. I showed Antony. He said he thought we should use an Epi because it was huge. I agreed. My face felt puffy, fat, big, huge...looked in the mirror...I'd sprouted an extra chin! I was breathing fine though. But, I didn't feel right and STILL had this unbelievable headache. Didn't feel like a 'reaction' per se.

Reluctantly, I used an Epi pen.

Tongue relief was almost instant. Holy dinah...I didn't realize HOW bad I was feeling until it began subsiding. I could feel my face going down.

Antony told me to get under the covers. I've been so cold lately. Body temp has been between 33.8 and 34.1 C, which is sort of in the 92/93F range. And, I always get cold with Epi. The shakes weren't as bad as they usually are....possibly because we were very relaxed about the whole thing. And here I am, on the futon in the family room, under blankets, surrounded by my books, seeds, farming journal and my laptop. Feeling tonnes better. But not completely ok.

I'm supposed to go to Emerg. when I've used an Epi. But, what are they going to do for me, that I can't do here?

I've since taken some Benadryl and a Prednisone and am about to take Ketotifen, Gastrocom and Ranitidine. I should be fine.

So, while trying NOT to think about it all, I STILL flared up.

I am not posting on Facebook how ill I feel or how ill I've been feeling because...I'm sure everyone is sick of hearing about it. God knows, I'm sick of writing about it. However, this is my Blog...and I can write what I want here. If not for myself, then for others with Masto. who are going through this same insanity...

Antony says today (and the past few days) has definitely been Masto and not 'reaction' so much. I am inclined to agree.

The Epi shakes have now worn off, and I'm feeling all the better for having 'shocked' the system. I might even be able to eat something now? Think I'll start with a cup of tea though.

I've begun keeping a handwritten journal of flare ups and the manifestations. No use mumbling on about sort of this, and sort of that, when I see Dr. Vadas on Thursday. I'm back to Toronto to see him and get another bone marrow biopsy for the c-kit mutation.

Forward ho...

Tuesday's Trivialities

2009-04-07T15:16:00.000-07:00

Let me begin with asking you to keep Dawn in your thoughts today. Masto bites. Lots of love and warmth coming your way Dawn...thinking about you.

The chickens arrived today. Ok, we had to go get them. But here they are.

That took the life out of me. Mind you, there were 60 of them. 24 for us; 36 for friends who loaned us the truck to go get them. The snow made it harder for us to transport them from truck to coops. My lungs still don't feel right but I'm breathing...

I'm having trouble seeing today. And, I've 'lost' time a few times today. I look super tired, black rings under my eyes...not myself. Eyes are sore. Feel like I didn't sleep, even though I know I did. Tongue is puffy. I'm itchy.

At least my tummy feels better. Now, if I could just keep warm.

Hoping your day is better.

Monday Meanderings

2009-04-06T15:17:00.000-07:00

Snow is falling heavily on our Northern Ontario community. It's unseasonably odd.

Our yearling chickens are supposed to be here tomorrow, so at 6pm, after work my husband is out in the cold putting together some kind of rudimentary housing for them until our chicken coop plans arrive and I can start putting together a straw bale coop (insulated!) I appreciate him being out there in the cold doing this. This isn't usual weather for us, so normally it would be sunny and brisk for the arrivals. Alas...

I ate half a pecan pie today because I was so miserable. Then fell into a coma all afternoon. No wonder I feel like a dead weight and moderately miserable right now. Ugh....I was annoyed because Ant didn't ring before he left work to get the updated grocery list. Which means he didn't check his email and FB messages either and...came home without all the stuff I need. Or think I need.

Part of my problem is this isolation and loneliness. Tasks like shopping, and missing an item from the list seems insurmountable when I'm not able to pick these items up myself. In light of the fact that my husband rarely cooks (but when he does, it's amazing!) and that a missing item can mean the difference between being able to make what you think you're going to make; and not. It doesn't bother him. And why would it? He goes into work everyday. He now has to deal with the chaos of stores that he frequents to purchase our groceries. He sits in traffic jams (small ones...we live in a small community.) I can go days without seeing anyone but myself, my husband and two children. And it's not by choice.

My husband keeps telling me that I have to start finding personal peace in what IS; where we ARE; who I AM; how things ARE...instead of hoping for a miracle.

I've always been comfortable in my own company. However, I never expected to have THIS much time to myself....

I shouldn't complain. Others would LOVE to have this time at home.

Sunday

2009-04-05T05:45:00.000-07:00

First off, little Gavin is having an endoscope this morning to try and find out the source of his internal gut bleeding and discomfort. IF you will, please keep him in your thoughts and prayers this morning, and hope for his doctors to find the source.

Gavin's Mom, Carla, keeps a poignant blog about her family's health issues and the journey with Masto and its complications. Today's entry is particularly poignant. Carla discusses her walk with tribulation and the comfort she's found in God. It's worth reading. Even if you're not God-fearing or God-loving. She manages to express the fragility with which we walk with illness, and those we love who have it.

http://mastomama.blogspot.com/2009/04/ah-alone-at-last.html

It was a tough week for me. I had a reaction (ironically at a Church) on Tuesday...I was attempting to have a 'day' in town. I was feeling strong when I left for town in the morning. And ended up in the Rescuc. Room in Emerg. by 1pm. I've been flaring up and down since. I flared up yesterday at the Christie District Fire Fighter's Pancake Breakfast. I wanted to go out and support them - even bursting into tears at my family's dispondency about getting there because "these people come out and save me all the time"...I started reacting within minutes of having a coffee and my eggs. Antony wonders if maybe they used a rubber spatula on the eggs in the kitchen. That's all it takes. Fortunately, got through it with 100 mgs of benadryl, and all the other drugs I have. I wasn't willing to use Epi, despite coughing because I wasn't gagging and in total distress. Just discomfort.

I got a lecture about this earlier this week. I saw Dr. Vadas in Toronto. He wants to see me again in two weeks. Around the same time that I have my bone marrow biopsy. He says I'm waiting too long to use Epi. Use it first...THEN chuck the antihistamines at the body to keep the reaction at bay.

He laughed nervously when I asked if he saw any reason why I couldn't have my driver's license back. I need to be reaction and blackout free for a year before we can even revisit this again. Ugh...THIS is the worse loss of personal freedom.

I'm wondering about staying here, on the farm. Antony has a good job here, with great benefits, and all that but I'm soooooooooooo isolated. And, to be honest...the friends that I have here don't make an effort to come to me. Perhaps though, this is because I make too much of an effort to go to them. And, apparently, it's dangerous. Wonder if they'll miss me if I am just not around? I'm starting to doubt it. I know this wouldn't be true of my Winnipeg friends. I get it that they are busy with their families...I'm just lonely.

Have to take my medication ON TIME. No missing doses, no not being regular. Dr. Vadas thinks this might have been part of the reason that I had a reaction coming out of knee surgery the other week. I'm to ask Dr. Smythe (Ortho. surgeon) whether they used Torodol on me. And, Dr. Vadas has put me on Gastrocom, to see if it helps with the gut issues I'm having. Have to take this 4 times a day.

Also, Dr. Hicks, in Winnipeg, has not forwarded the abnormal tryptase report to Dr. Vadas/Dr. Fischer. I have to get this for him. It'll be quicker than if he gets his secretary on it. So, this'll be part of the things I need to do tomorrow.

I'm tired of talking about my healthcare situation. There are sooooooooo many more interesting things to write about. However, this is my reality. We write what we know, right?

Hysterectomy

2009-04-03T12:10:00.001-07:00

Now I have to have a hysterectomy. Get to keep my ovaries. Not an option. No other ways out.

So, I'd like to thank my womb for bringing two amazing girls into my life.

Thanks.

Post Reaction and a trip to see my Immunologist

2009-04-01T22:13:00.000-07:00

I can't talk about it. Will try again tomorrow. OMG...WHERE have my words gone!?!?!?

Update

2009-04-01T04:14:00.000-07:00

Had anaphylaxis yesterday, at a Church. That'll teach me to branch out and TRY to go somewhere. Two epi pens and drugs later...they let me home. The hospital is used to me now and trusted I could look after myself at home after the reaction.

So I'm on the usual post-reaction protocol and I'm feeling horrid.

The horrid nurse and I had a 'healing' moment yesterday...which I'll write about later when I'm home from seeing Dr. Vadas, my Toronto Immunologist and Canada's Systemic Mastocytosis doctor. Hopefully we can avoid a rebound on route to Toronto and IN his hospital. I reacted a bit last time I was there.

Anyway, I'll check in later. Toronto is a good three hours from here. Downtown Toronto is 4 or 5, depending on traffic.

Digestive Hell

2009-03-30T10:48:00.000-07:00

The past 4 or 5 days have been hellish, internally. The swings between constipation and diahrrea seem nothing short of absurd. The pain...ohhhhhh, the pain. Sort of feels like someone has poured acid into your gut or you have one of those super huge farts that swirl around and can't come out...I've been bloated; I've poo'd; I've farted; I've burped; I've belched and every other unladylike thing that the gut can throw a person's way.

The meds I'm on aren't helping this. Or maybe they are, and it's relative...I'm experiencing what I'm experiencing and that's on top of the meds? I dunno. I DO know that dairy and meat are not my friends right now. I can have these things sometimes, and then...I can't. I never know until I have them, how I'm going to fair. And, until the past few days...I could deal with the discomfort. However, pain has reached new heights for me...and curled up on the futon downstairs so that I don't disturb anyone else in my house, with a hot beanbag, heatpad and hoping that someone will shoot me ISN'T ok.

So, over the weekend, during this hell, I put my thinking cap on. Not easy with the brain fog I so often have to deal with. Nothing like being a total moron when you've spent a good chunk of your life being functional. I know my sister, Jennifer, when her cancer was in her gut would stick to a macrobiotic diet. So, I'm going to take my cue from my dearly loved deceased sister.

Day 1 (today)
Breakfast
Oatmeal (steel cut oats...not instant or quick cook), organic of course. Mixed with mostly water and a wee bit (like less than a 1/4 cup) lactose free, organic, milk. A drizzle of Maple Syrup (that we made ourselves!) Organic raisins. Organic Hemp seed sprinkled on top, after cooking (don't cook or heat hemp!) A cup of green tea (the real, loose leaf stuff...in my cool teapot with the built in tea strainer.) A cup of water. Supplements.

Post breakfast...no urge to run to the loo and no need to light three sticks of incense.
Almost lunchtime...ditto. Pee'd twice without incident. Well, except for being bright yellow from the supplements. Weeeeeeeeee hOOOOOO!!!!!!!!!!

Lunch
Miso soup, with teaspoon of garlic (diced, raw), wakame seaweed, soft tofu...cubed.
1/4 cup brown rice, with soy sauce
1 slice left over quiche (that I made...this one was vegan...no cheese, but with zucchini, parsley, sundried tomatoes, garlic, spring onions and cilantro...YUMMERS!)
salad - which was really butterleaf lettuce and a couple springs of raw, organic, brocolli.
Green tea.
A cup of water.

So far...so good.

This is my first day of non-vomitting. No diahrrea or constipation cramps so far. AND...the pain is starting to subside. I had acid reflux yesterday all afternoon and I NEVER get that.

Will be switching over to vanilla soy milk when my husband gets home from work.

I feel completely fragile. My world has just gotten infinately more smaller, yet again. And it wasn't very big to begin with. So, I'm going to breathe in, try to enjoy what I can. And, ignore those cheesecakes in the fridge. Think I'll put them in the freezer for a rainy day. Someone else's rainy day, that is. Guests?

Thank the Lord for small mercies...like my not being a caffinated person any longer. I gave that habit up about a year ago and am better for it, overall. Withdrawal was a bitch though. However, I AM glad that I no longer NEED a cup of coffee or tea to get me through anything or going. I wake up ready to roll....assuming that I've slept.

I feel like my period is about to start, and for many Masto folks (well, women folk) this is a time of month when we find ourselves reacting in a huge way. I know 9 times out of 10, I am in hospital when I have my period. I know this because I fret about it...smells and going too long without going to the loo. One of the complications of being a woman with this disease and these reactions. So, I'm wondering if this is compounding the digestive sensitivity?

This all continues to be a bit elusive and a big mystery in a lot of ways. We desperately need funding for research for this incurable disease. There HAS to be a solution...or some common thread that ties all us Masto folks together? This can't just be an 'orphan' disease...

Gavin & other important friends

2009-03-29T05:56:00.000-07:00

His Mom is pleased to report that little Gavin is doing MUCH better...so thank you to everyone who thought about this important little man, prayed for him, wished him well and hoped he would be ok.

My friend Dawn, of Breaking of Dawn Blog, has had a rough past week or so with colitis and some Masto-related hell. I thought she was being unusually quiet. I wish I could take her health crap away so that she could go about living and enjoying her life with Marc and her gorgeous twin girls. She's been in hospital with it. Which, in the USA, costs an arm and a leg too. I seriously think we need to get some funding together for Masto folks, to help those in countries where trips to the hospital are paid out of pocket and seriously hamper a family's ability to function financially. This whole mastocytosis world means multiple trips to the hospital...wish I could say, even annunally, but for many of us, it's monthly or weekly. I've digressed. What I want to say is, Dawn, I hope you are healing from the digestive hell, that you are resting and that you are being kind to yourself. This disease is not your fault, it can't be helped when our body flares up and...please, just envelope yourself in as much love and light as possible. Big hugs.

I've had an off week. Not as turbulent as it can be or could be or has been. I've had 3 days of pretty serious insomnia due, I think, to bone pain and digestive disturbances. I've had 4 days of serious digestive issues...it seems like whatever I feed myself, churns, burns, refluxes, bloats, gas pains, diahrrea's or constipates (I fluctuate, hourly, between the two...NO fun) and just plain ole hurts my tummy. Sort of like a headache in my tummy, as my daughter once told me when she was four. I'm farting REALLY painful, uncomfortable farts right now, as I write this. Ugh...WHAT do I need to do!?!?!? I've ordered some Macrobiotic Diet books from Amazon. Perhaps eating THIS way will help. I'm having serious problems digesting meat. Huge issues. I tried lamb last night, only a small amount, and I had a night of digestive distress and am still hurting this morning. I guess it could've been the other foods, but I'm not sure what. Oh, maybe that cheesecake slice (we had friends over for dinner, so my hubby went and got a nice mixed cheesecake for afters). Hmmm....in retrospect, now that I mention it, THAT was stupid. I know dairy and I don't do well together.

My weight continues to burden me. Just feel myself getting heavier and heavier. Dawn and I have spoken to, and about, this. I'm wondering if the Ranitidine, in it's lowering the GI stomach juices, is interfering with our ability to digest foods? Ergo, our absorption continues to suck (we have enough issues with this, as is) AND our bodies are perhaps, not able to process our foods efficiently, ergo gets stored as fat? I might ask my Immunologist about this when I see him on Wednesday. Wow...where did 6 weeks go? Anyway, I've digressed again...my knees are on the mend, so I'm hoping to add some cardio (gently) to my week coming up to get my body limber and moving again. Yoga is definitely ON the plate too. Gotta move.

I've been flaring up, flush-wise, too for the past 4 days. I think part of my problem was that I went to WalMart and Sobey's with my friend Barb the other day (she drove) and, while I took a pile of drugs to offset any reactions in stores (which, unfortunately, has happened multiple times) and while, I got through my shopping quickly and without incident, when I got home, I flared up. And, I've been dealing with it since. Apparently proximity to allergen filled zones STILL affects me, even if the drugs are working WHILE I'm in the store. My body is still taking IN the allergens and dealing with them when the drugs wear off. UGH!!! I wouldn't have gone at all, except my husband had a digestive flu for 4 days last week. I would think I had this too, except that I get all the other masto-crap with mine. SO....not sure if it's a bit of both?

Anyway, much love and warmth to each of you in the week ahead. Especially for Dawn and her family; Gavin and his family and if it's ok to ask...for me, and my family too.

Pray for Gavin

2009-03-28T06:36:00.000-07:00

There's a little guy, Gavin, who is Masto Mama's boy ( http://mastomama.blogspot.com/2009/03/prayers-needed-now.html ) who is TOTALLY suffering this weekend with his Masto and other intestinal issues. Please, please, keep him and his family in his your hearts, in your prayers. Please pray, wish, hope & send love to his parents (who have the difficult task of remaining level headed) so that he can avoid invasive stomach surgery this weekend and week.

Come on little guy, you can get through this!!!!

Big love, hugs and prayers to you and your family, Carla. Gavin is so fortunate to have you in his court.
xoxooxxo
Fiona

Confessions Of A Gypsy Princess

JINX!

Ok...One More Crack At It...

Gut Hell, Anaphylaxis and How To Help My Girl...

GIRLY Day

Having a POTSY Time of It All

Christmas Day

End of The Week

Wednesday - Midweek Throughts, Feelings & Observations

Long Time No Write

November is Novel Writing Month!

New Art

Love Is In The Air, Again

Low Histamine Diet

Histamine-Restricted Diet

Food Sources of Histamine

From the Urticaria Chapter

Allowed/Restricted Foods

Type of Food

Foods Allowed

Foods Restricted

Milk and dairy

Breads and cereals

Vegetables

Fruits

Meat, poultry and fish

Eggs

Legumes

Nuts and seeds

Fats and oils

Spices and herbs

Sweeteners

Miscellaneous

Beverages

Histamine Restricted Diet for Control of Urticaria/Angioedema

Meat/Poultry/Fish

Milk and Milk Products

Fruits and Vegetables

Food Additives

Seasonings

Miscellaneous

Art Attack

New Art

Creative Juices

Pain

Hoarders

Stuck

home-grown Hero

Grateful

Solstice Arrival

Fundraising Effort for Mastocytosis Society of Canada

Life In The Bloglane

Mastocytosis Society of Canada

Feeling Groovy

All That Ick Is Gone...

Changes

Hysterectomy and Scopes

This Week

Chameleon

Couch Potatoe

Give Thanks!

Prescription Cut Off

Food n' stuff

Blah But Good

How Has Masto or Allergies Changed Your Life?

Gut Reaction

Mastocytosis or Severe Latex Allergy combined with Catemenial Anaphylaxis?

Mastocytosis and Heat

Post Shocking Fragility

shocking

Wallowing Wednesday

Thursday's Thoughts & Not Me...

Post Reaction Life

Confession

yesterday

Home Safe and Sound...

WHA????

On The Road

No Masto Here Day: Aging

Michael Jackson & Me