It was suggested that I blog about my anaphylaxis on the weekend. This would be my FOURTH, count'em, FOURTH, epi pen in November!!!...starting to feel like a pin cushion. Not to mention ALL the injectable benadryl, stemetil, gravol and steroids I've had to use to help with the reactions in and around the epi pens.
I had been feeling not so hot for a few days at the end of last week, as it was. But we had dinner plans with our dear friends Ingrid and Grant. Grant is really proud of his BBQ'ing prowess....the kind that takes HOURS to perfect and you see on those BBQ PIT MASTER tv shows. Not your rinky dinky slap a few burgers on the barby sort of thing you see in beer commercials. NO...this BBQing is SERIOUS business. I knew he'd got the ribs the night before, and made his own rub for them and was being UBER careful about the rub he was putting on them, becasue of my food allergies. His wife was being UBER careful about the side dishes with all my food senstivities and allergies, which is SOOOOOOOOOO amazing and wonderful SO, I wasn't about to cancel dinner on them because I felt a little 'off'.
About an hour before we were due there, my husband said to me "Honey, I really think we should call and bail, you don't look like you're up to this tonight."
"I've been medicating. I'll take more. We're going." I insisted. "I'll put makeup on...that's what it's for. No, we're going." Besides, the last time we'd gone for dinner there, we'd had SUCH a GREAT night over there, I was hoping we'd have another great night...
I never wear foundation or that short of heavy shit on my face, but went and put that on, powdered my face, mascara'd, eye shadowed, lipsticked and a blackshirt (in case I needed needles...white shirts show up the blood if they leak...), whipped up a couple of maple pecan pies to take and we headed out.
On route, I felt like I was going to chirp. We hadn't even't LOOKED at food yet and I was feeling barfy. I pulled the mirror down in the car, and sure enough, I was flushing (that's why I was itchy) and my tongue was a bit fat. Shit...So I got out my needle kits. Normally I don't use needles unless we are in an emergency but we were a few minutes away from arriving at their house and I wanted to make sure the drugs would be effective SOON, so I started drawing the needles up in the car. Antony found a safe place to pull in (Assiniboine Park) and a few needles later, we were ready to rucuss. Holy cow, you'd think I'd be over how much they hurt but I never am...they hurt. They make me wince. Sometimes I cry.
We arrived, all smiles.
And all was well for the first two hours. We ate dinner. I was careful to only eat a small amount of everything so as not to over burden my delicate system. I wanted to gorge. The ribs were AMAZING (we used Bradley's Maple Syrup from Orrvile...THE best Maple Syrup money can buy!!!!) and the baked squash/yam dish with crushed pecans on top, and the coleselaw.
So there we are two hours later, plahing Catan (board game), having coffee, when out of the blue, I start sneezing. I don't normally sneeze more than once but I couldn't stop. This progressed quite quickly to tongue tingling, to lip tingling to scratchy thoat to little hack hack hacks, to not being able to swallow my saliva to uncontrolled coughing to gagging to not being able to breathe.. My airway between the back of my throat and down my wind pipe to my lungs had closed in. My lungs hurt. While I was busy fumbling with my epi spray and TRYING to say "I'm fine; I'm ok" my husband reached for my bag and got an epi pen and just stabbed me.
Within seconds the relief in my throat was AMAZING. It was like the vice around my throat was released and the bear sitting on my chest had been rolled off. And...I could breathe.
At this point, we are supposed to call an ambulance and seek medical attention. IF this kind of thing happens to you, I am supposed to encourage you to do the same thing.
I did not.
We did not.
This is my 79th anaphylactic reaction and epi pen in the past 4 years. There are times when I neeed to go to the hospital and this was not one of them. I gave myself a benadryl injection and a steroid injection, and we waited for any signs of a rebound reaction....which did not happen. HAD there been one, absoltuely, we would have called for an ambulance.
Our friends had never seen anything like it. One minute I was fine. Then next I just wasn't. "Welcome to Mastocytosis" we laughed later. We continued to play Catan and I pretended to drink coffee. It's hard to hold a cup when you have epi shakes. Easy to roll the dice, mind you, with the shakes, but hard to hold a coffee cup.
Now, I am sequestered to the house for 5 days to get over the reaction because my body is fragile and any exposure can put me in hospital. I should be taking prednisone right now but I didn't seek medical attention, so I'm just doubling up on hydrocortisone instead.
I'm hardly eating anything though. I have NO appetite. I'm having to force myself to eat things to avoid hunger headaches, but I just can't bring myself to eat much. I've lost my love to eat food. I'm trying to be creative in kitchen for my family, and in the hopes that the deliciousness will inspire me to eat, but I usually just end up puking it up anyway, so WHAT's the point!?!?!? I'm sooooooooooooooo sick of puking.
Guess I can talk to Dr. GLew, my new family Doctor, when I see him on MOnday. He wants to go over the MASSIVE list of medications that I'm on right now and talk about what's what and why. I'll put that list up in a blogpost in the next day or so, so you can see how monstrous and insane it is. Not sure if he'll be able to help with puking thing because it's probably just Masto. or Addison's Disease but...holy Dinah, I barf a LOT. Doesn't even phase my family anymore, they are so used to it.
What I HAVE had the past two days, probably from ALL the steroids I've taken over the weekend, is feeling good. I know it's probably a false sense of wellness, from the steroids but I'll take it. It's nice NOT to be in so much pain you just want to crawl into a hole and die. It's nice to clean your house, visit with people and actually be able to FOCUS on what they are saying because you aren't in agony or needing to run to the washroom because soup is about to explode out of your butthole, or vomit out of your mouth. SO, the Christmas tree went up (early, I know...but my Motherinlaw is visiting for an early Christmas this week, from Ontario!!!) and I've been alert and present and feeling pretty normal. Hope it continues (fat chance...lol.)
Anyway, hopefully we use 1 or less epi pens for December.
Hope you're hanging in there, life is good and that you're being patient with yourself,