I'm Jewish!!!

Yah, you heard me right.

I'm Jewish!!!

How is it, I've managed to make it to 42 years of age and only just found this out???

I recently took part in a DNA study for Myeleoproliferative Diseases, of which Mastocytosis is one, and got back a whole bunch of DNA information about myself from my spit. Pretty amazing, actually. And one of the things I learned was that I'm of Ashkenazi Jewish descent on my Mother's side. My DNA profiling could only trace my maternal line because they need a brother, Uncle or Father sample from my family to do the paternal side of the family. This came as a HUGE shocker to all of us, who up until now, thought my Mother's family was pretty much Anglo-Saxon white bread. Turns out there's some heavy duty Eastern European blood coursing through those veins.

I burst into tears when I read the report that told me this. NOT because the report was actually telling me I was carrying the three gene markers for breast cancer and that there is an 80% chance that I will develop breast cancer before the age of 60, but that these three gene markers are specifically Ashkenazic Jewish gene markers...because it felt like this huge piece of my life's missing puzzle was neatly plopped into place. And I KNEW who I was. A peace washed over me.

I cried really hard for about 3 hours. My husband, between loving bouts of comfort, was laughing at me. "So I was right, you ARE a Jewish Princess!?!?!"...all these years, he's joked about me being one...and it turns out, I may well be one.  I cried because I was relieved, like I said, I FINALLY sort of had a sense of WHO I was/am/ARE; but more than that...I was crying because I was thinking about EVERY single time I have been treated badly by a Jewish person for being lesser of a human being than 'them'; for being a Gentile; a Goy...things I've been called by a former roommate and her friends who used to return from Synagogue a couple of nights a week to hang out at our apartment and proceed to rip said Gentiles and Goys to pieces, including me and I was present.  It was the first time in my life I experienced racial profiling and was routinely belittled for being what I was - me. Which is to say, not one of 'them'. Because that's what the world seemed to be divided into for the Jewish people I was experiencing..."THEM" and "US".  Even the two extremely successful millionaires I worked for as personal and executive assistants who were Jewish...they made sure I understood that there was "US" and "THEM" and the world was divided; one was better and we (that is to say, my kind, non-Jews) were lesser.  

I did take the time, during the course of knowing those people, to ask why they felt this way. Interesting to me was that all them shared the same response: "We are God's chosen people."

Apparently, this gives you a sense of superiority over all men and other races?

I don't know.  I can't imagine that this is ACTUALLY the case for all Jewish people.  After all, it turns out that I am one.  And I don't feel that way about human beings.  

However, I'm the first to admit, I don't know the first thing about being Jewish.  I'm eager to learn though.

And it would be wrong of me to leave you thinking that I've only been treated badly by Jewish people...that's not true. I have a lovely and dear Mastocytosis friend who is Jewish, and in one of my hours of need, she kindly and voluntarily helped me with medication that I couldn't afford at the time, and I remember thinking at the time...WOW, this wonderful woman is Jewish and is helping me and isn't treating me badly because I'm Goy or Gentile, she is just a beautiful human being and I am soooo grateful for HER (and her family.) I'm not sure even she knows how that small act of kindness helped shift what had been up until that point a VERY negative experience with pretty much every Jewish person I had encountered. But she did.  So, Julie, thank you. :)

But here I am, 42 years old and I've just found out that I'm Jewish.  It's funny but all my Jewish friends (I do have lots of Jewish friends it turns out...) all quickly wished me "Mazel Tov" and welcomed me to "The J Sisters"...and I like it. But I have to be mindful that I don't segregate the world into "them" and "us" and start enjoying belonging to a club that refused to have me as a member before now.  At the end of the day, we're all human and aren't we all made in God's image and loved by Him? Am I being too idealistic??  

I know it's not as simple as all this....I mean, there's being Jewish by blood and then there's being Jewish by faith.  I know NOTHING about being Jewish by faith, but I want to know. I have a genuine curiosity and fascination with it (and always have) and for years have wanted to go to Synagogue.  I'm not even sure how to begin though.  I have no Elders in my community to look to for answers or guidance. I have no Grandmother or Grandfather or Parents to ask in the ways and traditions of my people. When I've asked my Jewish friends to help me understand and learn about being Jewish I am politely silenced.  I may be asking the wrong people. (That's just occurred to me.)  So for now, I will use the internet and the library to learn what I can, as I can.  I guess I have another 42 years to learn what the first 42 years was missing.

And so, there you go, one more gift that Mastocytosis has given me...now I know my genetic background and I'm Jewish.  I would NEVER have known this if I hadn't gotten this crazy disease and taken part in this DNA study...see, you just never know where life is taking you....that's one heck of a gift I tell you. It's crazy good. I'm thrilled!

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 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. 

Mastocytosis or Severe Latex Allergy combined with Catemenial Anaphylaxis?

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

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.

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

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

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?

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...

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.

Doctors

I feel blessed to live in Canada, where we don't have to fork out of pocket hundreds of dollars to see a doctor for a few minutes. If we did, we might view the moments that we spend IN the doctor's office with a bit more scrutiny. We might find ourselves fighting a bit harder so that we don't leave the office feeling like, "well, THAT was a waste of time..." So, this post is bitter-sweet. On the one hand, I am utterly grateful for living in this country; on the other, I don't understand WHAT takes so freaking long!?!?!?

At the beginning of November, I had a pretty bad 'systemic' reaction (to who knows what?) after being exposed to some latex earlier in the week. Two Epi's, ambulance and a 3 day stint in the local hospital, more steroids than I care to remember as well as rebound reactions and my doctor (who I really like & appreciate) tells me that she thinks I need to see an Immunologist closer to home. She knows one in Barrie, ON and will have me referred there. My current Immunologist is in Winnipeg, where (in my opinion) she's been both careless AND thorough (odd, I know...) However, Winnipeg is a two and half day drive or a 3 hour plane ride IF you can take a plane, which I cannot.

In the middle of November, I called my doctor's office to see where this 'referral' was. "On her desk" is what her secretary told me; along with the letter that I drafted (at my doctor's request) stating that I am available for work ONLY if the environment is latex-free; the work is latex-free and the building is latex-free; and can be guaranteed.

At the end of November, I rang again...seeking the same thing. And was told the same thing. At which point, I kinda lost my cool, found myself seething, immediately flushing and having a 'reaction' (hmmm, guess stress IS a trigger!...I had, until recently denied this.) I asked the secretary IF she, or my doctor could fathom, even for a millisecond WHAT IT MUST BE LIKE being almost totally housebound, unable to work, unable to function in life, unable to move forward and to be sitting here in your home WAITING for life to start!?!!?!??!!? I got the rote, "I know this must be difficult for you, Fiona"...yaddah, yaddah, yaddah. Yep, you all know how hard it is for me right up until there is something YOU can do to alleviate this situation. Ugh. During this conversation I was able, at least, to get the name and number of the Immunologist I would be going to see. So, being pro-active, I rang, left a message and requested an appointment given that the referral was now going to be with them.

Two days later, I followed up. Nope, the referral and my letter was still "on her desk". I asked WHAT my doctor might be doing with my file, other than maybe hoping that I would go away? "She's reviewing the file, that's all I can tell you," her secretary replied. "THAT file," I shuddered, "is ME; I'm not a flaming file OR a piece of paper." "I know this must be difficult for you Fiona, let me see what I can do," she replied.

It's now the middle of December, and today I got my referral appointment with the Immunologist. April 20th 2009. So, I've been waiting over a month, so that I can wait ANOTHER 4 months. I am MORE than slightly irked, because it's not like I am dealing with some digestive discomfort that kind of puts a damper on my ability to have Tapas or go to Potlucks. I can't leave my HOUSE!!!!!!!! And when I do, I wear masks, and gloves and am ANYTHING but conspicuous.

It occurred to me, while I was talking myself out of over-reacting, this evening, and taking some Benadryl for the immediate flushing, tongue swelling and need to vomit that...whoa, stress REALLY IS a trigger. How ironic that the very medical system that is supposed to be HELPING me is CAUSING me to 'trigger'. It then occurred to me that this appointment in April will be one of those appointments (unless I do something about it) where I show up, and the Doctor has an empty file, looks at me, asks me some questions and I find myself repeating my WHOLE last year and half of ordeals (this time frame being the most crucial and recent of 'episodes') and that, NO, he has no medical records from my GP/MD OR the Immunologist I've been dealing with in Winnipeg for over a year. THEN, he'll likely tell me that he'll have to request this information. WHY ISN'T THIS FOUR MONTHS BEING USED TO TRANSFER MY FILES/INFORMATION/TEST RESULTS, etc???? I know this is how this will go (unless I handle it...which I will) because I've been down this flaming road already, with Immunologists, Oncologists, Pathologists and Hematologists!!!! I keep repeating myself to ALL these doctors, when really, they should be speaking to each other ABOUT me!!! What the hell are we paying them for!??!?!!?!? (Or rather, the Government, on our behalf.) Seems to me, some medical auditing might shed some light...but that isn't going to happen in a medical system already burdened.

I am trying NOT to be selfish about the four month wait that I have ahead of me. Really, trying. However, I'm finding it difficult NOT to react to it all. Because, quite frankly, WHAT is this Immunologist going to do for me? More 'trigger' testing? More blood, RAST, Tryptase and 24 hour urine-catchecolamine testing? Like all the testing done earlier this year, those tests will likely show that I have elevated tryptase (22+) and histamine in my system (and that's when I'm NOT reacting.) Do these people NOT understand that this is ANOTHER 4 months without any significant improvement; without the ability to provide financially for my family; without the ability to be the wife, mother, friend and community member that I want to be; have been and hope to be again.

My husband said to me last night, very nonchalantly, "...until you've finished adjusting to your new life..." This hit me like a tonne of bricks. AM I THE LAST PERSON to KNOW that life will NEVER be what I know it's capable of being??? Am I truly living a life without ANY hope of being a functional member of my family, community and society? Am I really going to have to live the rest of my life in this farmhouse?

Am I stupid for not wanting to accept that THIS is it!?!? I am aware that life is being reinvented for me (or rather that I have to reinvent it), but underneath it all, I keep hoping my life will return to some semblance of normalcy and that I'll, at least, be able to drive again. I'm a Gypsy...I need to travel; to move. I always have. So when I'm feeling like a caged animal, WHY can't any of these Doctors understand that I need them to help me NOW, not after going through all this shit for the past year and half AND waiting another four months...just to SEE someone. It's not like he's going to help me on the first appointment.

No wonder I feel so flaming paralyzed.

Another Masto Day?

The jury is still out on whether I actually HAVE Mastocytosis or not. One Oncologist thinks I do, my Immunologist thinks it'd explain loads of things (and my blood/urine tests point in this direction) and the second opinion Oncologist/Hematologist has just done the bone marrow biopsy. Nothing like being in limbo.

The pain in my gut subsided today, but am still waiting for solid poo to come out of my bottom. (Sorry about the visual.) However, I am not tolerating the cold very well at all. AT ALL. Everyone else feels fine in the house, but me. It's 22 degrees on the thermostat, but it must be wrong because the cold that IS in house has found its way into my bones. My knees are the most painful part of my skeletal system. Some days, I just want to hack them off at the thighs. I've given up crying when they hurt (which isn't just for a few hours...it goes on for weeks, days, is continuous and it's not arthritis). It's worse when my gut AND bones hurt. There's not really any point in taking painkillers for the pain because that will only lead to the eventual demise of my liver (and as I had funky liver readings last year, that were conducive with long-term excessive acetaminophen use. I was popping 6-9, sometimes 12, extra-strength Tylenol and arthritis formula daily to deal with myself...I finally figured that I'd better just suck up the pain. The liver is vital to my living a long, healthy life and let's face it, loss of liver function on TOP of all of this would be really bad.) I get serious pain in my long bones too. I have fractured my tibia and ankle three times in the past three years. Not by doing anything much either (ok, except for the one time I was carrying too many forestry fire packs into a bush fire.) I was just walking around and snap.

Do I need to mention the fatigue? When you wake up and your get up and go has gone, and you want it to be there and it's nowhere to be found...it bites. Some days, I'm just soooooooo cold, and my bones hurt so badly that all I can do is sit under the electric blanket and wait for someone to come and light a fire for me. This task usually falls to my husband. But not before I have a giant fit about being cold and how ridiculous it is that I have to go OUTSIDE to get into the basement to light the wood furnace. I am seriously too cold to get warm sometimes. Unless it's summer, in which case, I can't stand the heat. It makes me feel sick to my stomach and it's instant flu-like draining sensation. Can't win. Unless it's Autumn and just right.

My world has gotten smaller and smaller over this past year. Repeated anaphylactoid episodes (that I have recently learned differ from ANAPHYLAXIS in that they aren't IGe-mediated responses...just random trigger responses) have taken their toll and have affected EVERY angle of my life. I'd be inhuman NOT to be affected by it all. Tonight my husband is at parent-teacher interviews with the children, and I am not with them. This is the first year that I've not actively been involved with my children's school and conversing face to face with their teachers. I find this really hard to deal with. I only get to see what masticated projects make it home. The school is full of latex (one of my deadly and known triggers.) This is just one of the many losses I've incurred since last October when a bee/wasp (?) sting almost killed me and all of a sudden I was reacting to EVERYTHING.

Even my family doctor called me a few weeks ago to let me know that she wouldn't able to care for me anymore due to the severity of my latex allergy and the presence of it in her office. So far though, she's been fabulous in dealing with me in Emergency and Ambulatory Care at the local hospital. And, she hasn't totally given up on me. Mostly because she considers me a 'serious' patient and I have a lot going on. PHew...almost another loss. BUT, the silver lining here is that my local hospital is latex-free.

In my recent appeal to my Canadian Long Term Disabilty claim, I listed some of the major 'losses' in my life. When your Immunologist and every other doctor that you see in Emergency tells you that the best place for you to be is at home (now that it's been mostly secured), and best not to gander elsewhere (unknown triggers lurking...) and that this "must be sooooo difficult for you" (and look at you with sympathetic, pitying eyes), the list of 'losses' gets bigger and bigger, while the world that you live in gets smaller and smaller. At least for me it has. I expend a lot of energy on this long term disability claim, not because I want it, but because we need it and I qualify by all definitions...it sucks that I have to fight THIS hard for such a small amount of money. Not having been able/permitted to work for over a year though is devastating financially (and this is where guilt, and those feelings of inadequacy rear their heads) and this fight is sooooooooooooooo draining. I had an anaphylactoid reaction when I read their decision to deny me benefits because it stressed me out so badly. Stupid. I've been working on those feelings too. Need to. I can't have myself responding to this kind of news in this manner. My claim, by the way, is based soley (at the moment) on the severity of the latex allergy and responses. I'm not sure if a confirmed second opinion diagnosis of Systemic Mastocytosis would help. Yet another loss.

I am no longer permitted to drive. Due to continued blackouts/loss of consciousness episodes. In the medical world they call that 'syncope'. I understand the reasons that I am considered a risk on the road. However, I live in the middle of nowhere, on a dirt road, with no close neighbours and the nearest town is 20 minutes drive away. Be careful when you wish for a bit more solitude in your life...like me, you may get it in MUCH bigger ways than you wished for.

It'd be all too easy to be utterly depressed about all of this. However, it wouldn't actually help anything. It certainly won't make me feel better. And, of course, depression is part of this. I'm opting to face my depression and work through the feelings of inadequacy, loss, dependency, fear, uselessness, guilt and grief that rear their ugly heads when I'm already pms'ing or not having a good day. I took myself off the anti-depressants. NOT RECOMMENDED. Nor doing it cold turkey, like I did. But I really wanted to know how FIONA felt; and who I was, warts and all.

For me, fear of being dependent on others, has been the biggest challenge. Especially concerning my spouse. Fear of having to rely on my husband (who is wonderful in so many ways) because he often doesn't really understand why I get so panicked or freaked out when he doesn't take care of something that I can't take care of, feel I need him to take care of and in his world, isn't really all that important to him, so he just doesn't do it...whatever it is, is huge. HUGE. I have considered that perhaps this is a life-lesson is accepting what IS, in things that I cannot change and finding the wisdom/courage to let those things/ideas go. However, the fear of not being able to rely on my husband continues to be there. And this bites too. The fear isn't his responsiblity though. Some people might say that it is. We married for better or for worse...and Masto Days are the worst. (I guess even that statement is relative...there's alwasy someone worse off than you, right?)

Anyway, it's 8pm now, and I'm exhausted. I didn't really nap today (like I have to if I want to stay up past 6pm and not be a total grumpy bear.) So, I know if you have this, you'll understand that I'm done.

Oncology & possible Systemic Mastocytosis

I'm scared.

Tomorrow afternoon I have my first visit with an Oncologist. I'm going because my Allergist wants to rule out Systemic Mastocytosis/Mast Cell Disease (and perhaps even that insidious Leukemia.)

I don't have cancer. I think I could FEEL it, if I did.

However, we are ruling out these rare conditions because of the sheer number of anaphylactic/syncope/allergic reaction episodes that this body of mine has experienced in the past year.

I'm not scared of what might be, but rather of the testing itself. Bone marrow testing, apparently isn't very nice. Ok, apparently, despite local freezing, it's downright painful and awful. I have a fairly good threshold for pain. But, for some reason, THIS is terrifying me.

Elevated levels of histamine in my 24 hr urine sample and some funky tryptase levels, apparently, are cause for serious concern. I've tried to make light of this, but here I am, the night before...scared.

Why call it something else? Fear is fear.