Monday, July 7, 2008

The Sticks and Stones of Systemic Mastocytosis

I'm not much for labels. However, I guess this means some people I know will quit calling me a 'hypochondriac' or thinking I am. Instead, they can share their own personal involvement with a person with a RARE disorder/disease/dis-ease, and give their lives some semblance of purpose in knowing someone with something awful.

WHY don't people like to share GOOD NEWS???? No-one ever walks around saying, "Did you hear so and so has been healthy for the past forever?"; "Did you hear that so and so is totally in love with her husband and their marriage is wonderfully strong?"

Nope, people like to hear the shit. The misery. The sorrow.

So, my appointment the other day with the Oncologist (that I was so scared about) was bitter-sweet. There's good news and bad news. I doubt the good news will be shared. But I hope it will. The bad news is what it is. Can't do much about it. I hope there is more to talk about than my bad news.

Good News: The Oncologist didn't do a bone marrow test on me. She said it was pointless.

Bad News: The Oncologist said there was no question in her mind that my bone marrow would have excessive mast cell proliferation in it. My clinical history, combined with the funky tryptase blood and histamine in the 24 hour urine testing was enough to convince her that my Allergist (Western) was correct in her diagnosis of Systemic Mastocytosis.

Wait a minute...I thought we were 'ruling this out'????

Apparently not.

Apparently, we were 'confirming' the diagnosis.

Everything I've read since says bone marrow is essential for testing this disorder. The Oncologist I saw says in her experience bone marrow testing is painful and for this particular disorder/disease is unhelpful because it doesn't tell her WHERE the proliferation of Mast Cells are hanging out. My liver? My adrenals (my right adrenal gland hurts a lot of the time...WHY do doctors look at me like I'm from Mars when I tell them this? I KNOW where it is BECAUSE IT HURTS!!!!!! and it's atop my right kidney!!!!)? My Spleen? My Stomach? She says we'll have to wait for one or more of these organs to start malfunctioning to KNOW. In the meantime, she tells me, I have her sympathies as living with this illness is NO FUN.

Hmmm, no shit. I'm not really a big fan of anaphylaxis; allergic reactions; stomach pain; knee and long bone pain (for which I'm due to get surgery...better re-visit THIS procedure); headaches (which have actually improved since I started de-stressing); vomiting; diarrhea; depression/irritability; intense fatigue; brain fog, inability to control my own body temperature and often suffering with hypothermia, the shakes, and my favourite...blacking out/passing out...they call that 'syncope' in the medicine world. And then, there's...etc. "Etc" includes all those foods that make me puke or shit myself senseless...sometimes, sometimes all of the time and sometimes most of the time, but not always. "Etc" is how I feel when I wake up the heat of a summer's smog day in Northern Ontario and feel like crap before I've even rolled out of bed.

I guess it's been difficult watching me go to doctor, after doctor, after doctor for test after test after test and to NOT think I've been a hypochondriac. This past 5 years, I've gone down the Multiple Sclerosis road; the Parkinson Road; the Neurology road; the Mercury poisoning road; the Candida road; the Thyroid road, and a pile of other roads that make me tired just thinking about them. And then, my latex allergy took me to an Allergist who was thorough. And, here we are...having figured it aaaaaaaaaaaallllllll out.

Ahhh...well, now we have a diagnosis. The tumultuous road of hypochondria and insanity is over? The insanity might not be, but at least the name calling might be.

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