Wednesday, January 25, 2012

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

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's a week and one day! Ok...a week ago, two days ago was my last one. Last Epi Pen. make it to TWO WEEKS.

What I'm not telling you is that I've had this horrendous cold. HA'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.


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. 

Saturday, January 14, 2012

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

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.

Thursday, January 5, 2012


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 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.