Friday, July 17, 2009


I've emailed this post that I wrote for my immediate family (to the ones I didn't actually speak to yesterday) to a few of you already, so I'm sorry to repeat myself. However, after some thought, I think it's important for me to be real about this health chronicling, especially when it gets this dark for a person. When I say that if someone had offered to slice my throat for me and let me bleed to death last night and it would have been less pain than what I experienced post reaction, I mean it. I got about an hours sleep last night, and that was with 2 prescription sleeping pills. My life is good, and I love my kids and husband and friends and community (which includes you) but I was tempted to down the remainder of my full bottles of various anti-depressants (that didn't do a thing for me when I was on them, in the end) and the full bottle of sleeping pills I have and anything else that would help this cocktail...last night I was ready to leave this planet because this pain, physical body pain, was unreal. I forgot, until this morning, that I'm usually in hospital at this point and when I get to the point that I can't stand myself and am crying myself into oblivion because of it (and reeling with self pity) a nurse usually suggests that she give me some morphine or percoset (if I can keep things down.) Today, I've purchased a King Sized wet/dry body heating pad because my regular sized one wasn't big enough for the all over body pain I had last night. I couldn't figure out where to put it because every single bone and joint in this body hurt that bad. I was unbelievably cold too. It's July. I had a heat pad on, blankets, wrapped up AND the space heater on in the family room where I slept so as not to wake the rest of the household. I was frozen. My body temp read 89 degrees farenheit.

Reasons to live are important. Especially in the wake of these kinds of invasive thoughts. It's odd today, to me, to be real about how bad that pain gets and how putting yourself out of misery feels like a better way to get through it. Glad I ignored myself. My husband and children are damned good reasons to keep going. Plus, I guess I should really get to work on finishing the two books I'm writing.

I saw my family physician this morning. He's not impressed with how I was handled (or rather not handled, yesterday) and couldn't believe they let me leave the hospital like that. He's given me Percoset for the bone pain. He knows I'm adverse to taking this stuff. However, for nights like last night...

We've also decided to move back to Orillia for the hysterectomy because the only reason the procedure was being moved to St. Michael's hospital was for this whole anaphylaxis/Masto complication thing. This new gynaecologist didn't listen to me about my not doing well on any kind of hormones, or that the IUD I had installed disintegrated inside me, and refuses to call/speak with my Oby/Gyn in Orillia who's SEEN my uterus and knows what the problem is. The new Oby/Gyn has written a full report of my GP, and my GP asked me what I thought of all this. I said I wasn't comfortable with this new guy OR the fact that he wants me to go down roads that I've already been down in the past few years for the same tests to reap the same results and won't even have a dialogue with my Orillia Oby/Gyn. My GP will speak with my Orillia Oby/Gyn about getting this hysterectomy done soon AND they are going to test the uterus for mast cells because it could be that all this hell is sitting in my uterus. Different, but likely. IF I have mast cell issues lurking in vital organs or body systems, my pain sites tell me it's either my uterus/right ovary/right kidney or right adrenal gland, and my stomach/intestines. My GP thinks there is a possibility that we might see an improvement in this whole mast cell malarky without the uterus. There's DEFINITELY hormonal involvement. Got my period yesterday afternoon, with a vengeance.

Anyway, here's what I sent to my immediate family that I did not speak to personally yesterday.

I'm so sorry that I'm writing this this way again...I'm tired of talking about this shit so I can't bring myself to repeat myself. I don't want to talk about this on the phone either, right now...if that's ok.
No c-kit mutation on my mast cells. No sign of the other even rarer disease. Oncology/Hematology is closing the book on me and I'm back to Dr. Vadas, my Immunologist.
"WEE HOO!" I said, "so I DON'T have Systemic Mastocytosis!!?!?" My enthusiasm (which when you read down you'll understand why this sentiment wasn't exactly easy for me to express at this time...) was met with a definite "No, that's NOT what this means." It just isn't present in my blood or bone marrow. Quite possibly present somewhere else, I was told. Dr. Vadas might have other suggestions, they said, but likely we won't know until one of my vital organs starts shutting down. They don't know enough about the disease to know what all the markers are for it, and this was a stab in the dark. So I was told I probably still have SM despite this test result being what it is. because clinically, I present in every way as if I have Systemic Mastocytosis. And was told to stay on my medications.
Add fuel to an already sensitive fire: I had a reaction in their waiting room before I saw the doctors. I'm pretty sure it was the Polish lady that came in with super strong alcohol-floral based perfume and sat across from me. We can call this a little reaction, or medium. I was fine when I got there, and all the way down to Toronto in the car. Although, now that I think about it, my bones were already hurting and I had a slight headache, which I attributed to possibly being ready to have my period (which hit me dead in the face this afternoon on route home...oh joy.) There is a huge correlation between menstrual cycles and Systemic Masto. in women, they are discovering. However, after about 20 mins in the waiting room, I began coughing, spluttering, getting short of breath, flushed real bad, eyes and nose running. I've had waaaaaaaaaaay worse reactions, but it was unpleasant. No-one came to see if I was ok...I mean, I wasn't coughing when I showed up. Ant went to ask someone to move me after two epi sprays didn't keep it at bay, initially. They fumbled around not really taking him seriously until he yelled at someone "Look, my wife has life threatening allergies and someone has worn stinky perfume or something and set her off, now PLEASE help me!!! She will go into full ugly anaphylaxis if we don't move her out of the allergen!!!! NOW!" I heard them say they had a room, Ant came back to get me. I got up to go with him, and probably shouldn't have because I was feeling super light headed all of a sudden when I was sitting, and the tachycardia (rapid heart beating) I'd had since before I started coughing and the sense of panic/dread/omg, I'm gonna die feeling that had prompted the 'go get someone' nudge, suddenly disappeared seconds before he returned and I felt 'funny' thing I know, I get the all over body tingle and then...I'm on the floor saying, "I'm sorry, I'm sorry..." (and not knowing why I was saying this but aware I was saying it, like it was someone else saying it...) and my head hurt like hell. I have a nice goose egg on my skull where my head, apparently, made contact with the cement floor. A nurse was called, and came over to see me while Ant was holding me on the floor telling I'm ok, "you're ok, I've got you, you're ok, I've got you..." over and over. She asks me what happened. I try to tell her but it hurts to talk and breathe and my tongue is fat.

No-one gave me epinephrine. Or took me to Emerg. or called for help. Not because I didn't need it but because they all just stood there going, "" Not sure where all those people came from but...none of them knew what to do.

I continued to feel like I was going to fall down, even though I was already down...that's a flippin' weird sensation. I've gotten really good at knowing this drop in blood pressure feeling now. It was really fast. And disconcerting.

Someone decided to move me to a room, and collectively they grabbed me and put me in a chair in a nearby examining room. I gave myself more epi spray because this reaction wasn't over.

Doctor came in to check my pupils and they were fine, just a raging headache. I'd given myself one more epi spray by then. And all that breathing, trouble swallowing feeling, pain in my lungs eased up. Then I puked that wonderful ball of allergic foam that I do during reactions. And puked some more.

Then they told me about the bone marrow biopsy results and told me that I could go home. To come to Emerg. if I didn't feel right, started having trouble talking or passed out again.

Don't think Dr. Vadas is going to be very happy about this. I left there with a throbbing head, fat tongue (no -one looked at it and they were afraid to use their instruments to check my breathing, lungs, etc because of the latex issue) and am now in excruciating post reaction bone pain, headache of unbelievable strength, feeling worthless, useless, depressed and super sorry for myself. I should be exhausted, but as usual, I can't sleep now. I'm in so much pain, I, I dunno, I can't even describe it. Thankfully I have a loving husband and children because...I'd let someone shoot me right now otherwise. I'm sooooooooooo frustrated. Don't get me wrong, I'm thrilled this isn't in my bone marrow/blood (no ugly genes or gene coding to pass on to my girls) but the two doctors I saw (Dr. Hicks, my Hematologist is about to drop those twins, hasn't yet, and wasn't feeling well enough to come in today, so I had her replacement - Dr. Hicks brought her up to speed on the phone this morning about me - and this other doctor who got called when I passed out...) just said they were sorry, my life must suck. Avoid triggers and stay safe. Maybe 10 years from now they'll understand more about this disease and its markers but for now, it's so new, they don't really know, and obviously bone marrow biopsies are proving not to be all that helpful (THEN WHY, WHY did I have to go through this again!?!?!??!)'s a guessing game. For all they know, I could be the first of something else and this could well be Fiona Smith Disease...oh great, THERE's a legacy that I want to leave on this planet.
I did ask if maybe this was all in my head and was met with a united, "NO! There's no way your body can do all of this psychologically. Impossible. No, there is definitely something wrong; You are definitely sick..."

No shit. All of you know though, that I refuse to define myself this way. I'm not in denial that something is wrong but I can't stuff myself into the 'sick' box and stay there. If there's a box that I'm to be stuck in, I won't stop trying to redecorate it, get out of it, make it more comfortable and find ways of enjoying it or to escape from it, even if temporary. Not today though. I'm raw. And hurt. And angry. You all know too, that I try very hard NOT to be these things. Or to feel sorry for myself. I know it could be worse. I don't have's not my child with this. But fuck, I've had it.

Have gotten home, and there is chicken carnage all over the garden, down the driveway, down the road...and it's too dark to see how many of our 32 hens are left. We've found 4, who are alive but might not make it to morning due to shock. Will reassess in the morning.

I can't do this anymore...I'm so tired. Someone please make this go away. And I'm sitting here asking the rhetorical question: HOW the hell did I manage to invite this crap into my life?

Thank you for your continued love, patience and listening. I love each of you for reasons and for lives that are too enormous to mention.
I know sarcasm is the lowest form of humour but, Wee Hoo, I get to live another day.

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