Wednesday, November 30, 2011

Wednesday - Midweek Throughts, Feelings & Observations

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

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

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

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

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

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

We arrived, all smiles.

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

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

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

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

I did not.

We did not.

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

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

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

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

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

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

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

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

Wednesday, November 23, 2011

Long Time No Write

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

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

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

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

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

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