Tuesday, January 20, 2009

Just Another Weekend with S.M.

We went over to a friend's house on Friday night. She's been brilliant about de-latexing her home for me and I've flushed and not felt right a few times there but nothing that drugs hasn't taken care of. But on Friday night, I REALLY didn't feel right after being there for a few minutes. And, I didn't feel right after getting out of my husband's car. So what was it? Dunno. Anyway, I began flushing...which isn't a crisis in and of itself. I don't usually start panicking until it's mixed with other things, oh like, having trouble breathing and/or swelling tongue/throat. But, I just had the pain in my right lung that I get during 'reactions'. No gagging, no spluttering, no drama. But I didn't feel right.

Then, I needed to go pee. The loo is upstairs. So, I asked my husband if he'd mind helping me to the bathroom. I managed to navigate the kitchen. However, it was in the entrance to the living room that the room got all woozy and the immediate sensation of numbness in every part of my body, and zero control over my extremities hit. I remember thinking, "No!" and the next thing I know, I'm on the ground, left knee throbbing, husband behind my head telling me that I'm ok and my friend Lori, in front of me, holding my hands telling me that I'm ok.

The words, "I'm sorry" fell out of my mouth over and over again, as I tried to regain control of myself, the situation and...well, me.

I was told that I didn't need to be sorry.

My right knee was hurting like hell.

Together, they pulled me into a sitting position, and then when the world wasn't so woozy, they helped me back to the kitchen to a chair. I still needed to pee but I needed to sit still, more. I was totally flushed and rashed over my face and neck. My heart was racing, although Lori said it didn't seem to be to her when she felt my pulse. I took my meds: allerdryl, ranitidine, doxepin, reactine, prednisone, ventolin and waited. My right lung still hurt when I breathed in, and out but eased up after the ventolin. And we waited. All the friends gathered there for the gaming night looked on, with sympathetic glances and I felt like a total moron. The drugs kicked in eventually, and everything began to settle down. I still felt woozy, but didn't fall down. Mind you, I didn't get up except for one supervised and assisted trip to the washroom, and then out to the car to go home.

Saturday, I felt like I'd been run over by a truck.

Sunday, I awoke feeling the same way. Pounding head, rapid heartbeat intermittently, flushing and sick to my stomach. I slept until 9:30 am, went back to bed at 11:30 am and slept until 2pm. We went to the inlaws for an early supper. All was well until I went to whip the cream for dessert. During whipping, a gust of air popped up from the hand mixer and literally choked me on contact. And whammo, I couldn't get any air. Or much. I gagged, I coughed, I spluttered, I removed myself from the kitchen so as not to disturb the dinner table guests, and coughed my heart out. My husband found me, and grabbed my meds. We shoveled them in, with his saying, "Do I need to stab you?" Avoid Epi, at all costs, has become my new motto. Do not stab unless cannot breathe on own. Do not stab unless unconscious. Do not panic. "No", I gasped, "wait." And we waited. And it hurt to breathe. And my tongue tingled but didn't get bigger than it was. And I puked and puked that weird white foamy crap that only appears during an allergic reaction. And we waited. And then it all started to settle down...eventually. It still hurt to breathe, but I wasn't spluttering. I felt sick but wasn't puking. I felt woozy but wasn't falling down. We went home early. The drugs knock me out.

Monday, I woke up feeling like I'd been run over by a truck. No energy. Heavy. But alive and breathing. I got through kids lunches, breakfast, dressing, teeth, hair, snowsuits and out the door. I walked the dog for an hour outside in the cool air (I was dressed warmly) and took immense pleasure in being outside, in breathing, in Being. Came in, and called my Immunologist's office. I'm just about out of meds. Do I need to come down to Barrie to see him (2 hour drive) or can it be called in? I'm now on max dose of Doxepin, and not because I want to be. I've stayed out of the hospital but am still having reactions...WHY?

Monday afternoon, the Immunologist's office called me back. My ears must've been burning, I was told. I'd been discussed most of the morning. My test results, and patient file have arrived in their office from Winnipeg; from my previous Immunologist who suspects I have Systemic Mastocytosis and who's sent me to two Oncologists...one says I have it; the other says I don't. My Barrie Immunologist needed to see for himself the RAST, tryptase, catchecolomine, IgE testing for himself, and now that he's seen it all...he wants to send me to St. Michael's Hospital in Toronto to see Dr. Vas. (his name is too long for anyone to use it for real, apparently) who can do the c-kit mutation testing, and whatever else they are going to do. They will book me an appointment as soon as possible. In the meantime, stay on the meds, stay safe, don't risk unknown environments and avoid environments in which I've reacted; avoid 'reactive' foods; avoid latex at all costs and other possible chemical and environmental allergens.

I know this would all be doubly hard to take IF I hadn't been awarded long term disability benefits recently. I would be stressed beyond belief about getting back to NORMAL life and being a productive member of my household (because I've got some messed up notion that the housework; food; laundry; writing and house sorting that I do is somehow unvalued and unappreciated.) Once again, I need to remind myself that whatever NORMAL was; it isn't any longer...the parameters of NORMAL have shifted, and I need to do as the doctor tells me. So I am. Reluctantly.

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