Reaction Recovery

Not sure how it happened. Didn't touch anything. Tongue just got tingling and then the right half of it swelled (looked VERY odd), started to hurt when I breathed (especially that spot in my right lung), my lymph nodes under the earlobes started hurting, got light-headed and dizzy upon standing (so had to sit or lie down) and...I began feeling that 'impending doom' feeling.

I got a lecture from my Immunologist this past Monday about not using Epi when this kind of thing starts. "You don't know how it's going to go" she always tells me. Hmmm, that's ok for you to say [I think] because it's not YOU the doctors and nurses look at like you're an idiot when you get to Emerg. and your vitals are good. Tongue will still be slightly fat, but not HUGE (and, let's face it, they have NO idea what my tongue looks like when it's happy) and how is it possible that pain in breathing is only in this ONE spot in your right lung???? They use the "c" word when they look at me. "Crazy."

Or at least, that's how I feel.

So here I am today, post-Benadryl, and the rest of the arsenal of medications that I have. I didn't use Epi...it's SUCH an ordeal using that stuff. Mind you, maybe I'd feel better right now if I had? I don't feel right. My tongue is still swollen and now, being Day 2 - it hurts. Solid food is impossible today. I tried. It won't go down. Who wants food anyway? I've been vomiting and/or on the loo with diahrrea for three days. AND, I'm not sick. Oh, and that spot in my right lung hurts like heck. I won't even get into the details of the excruciating knee pain.

My Immunologist wants a second opinion from another Oncologist/Hematologist and that bone marrow test done. She says SM NEEDS that bone marrow testing done. SO, I'm now waiting to hear of my impending appt. with another doctor. Oh joy.

Ever feel like a rat, running around on a wheel?

ugh.

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.

Oncology & possible Systemic Mastocytosis

I'm scared.

Tomorrow afternoon I have my first visit with an Oncologist. I'm going because my Allergist wants to rule out Systemic Mastocytosis/Mast Cell Disease (and perhaps even that insidious Leukemia.)

I don't have cancer. I think I could FEEL it, if I did.

However, we are ruling out these rare conditions because of the sheer number of anaphylactic/syncope/allergic reaction episodes that this body of mine has experienced in the past year.

I'm not scared of what might be, but rather of the testing itself. Bone marrow testing, apparently isn't very nice. Ok, apparently, despite local freezing, it's downright painful and awful. I have a fairly good threshold for pain. But, for some reason, THIS is terrifying me.

Elevated levels of histamine in my 24 hr urine sample and some funky tryptase levels, apparently, are cause for serious concern. I've tried to make light of this, but here I am, the night before...scared.

Why call it something else? Fear is fear.