Wednesday, August 26, 2009

How Has Masto or Allergies Changed Your Life?

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.


Sunday, August 23, 2009

Gut Reaction

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.

Wednesday, August 19, 2009

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:

chicken (when I can tolerate it)
salmon (never have a problem with it)

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.

Saturday, August 15, 2009

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'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, all three of us are fearless readers. "Little Missy Bossy" or "Mr. Bump", "The Giving Tree" or "The Boy Next Door"'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.

Monday, August 10, 2009

Post Shocking Fragility

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

Monday, August 3, 2009


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.