Wednesday, February 18, 2009

What does all of this mean??

I'm so lost right now. This disease... this mastocytosis... what the fuck is it? So far all I know is I get hives, have anxiety, am a lousey sleeper, have a tryptase level of 70 and now... a N-methylhistamine level of 267 (normal is 30-200).

I'm healthy. I have a few minor symptoms. I haven't shocked (anaphalaxis) except for one episode where I may have shocked in 97 or 96. I've had some weird stomach things about 10 years back that could be masto or could be a virus.

Shit, now that I am obsessing about this... I had a weird thing about 15 years ago where I couldn't eat much and dropped like 50lbs. Stomach issue or masto? Your guess is as good as mine.

What I can't figure out is this.... am I sick? Seriously. I'm in pretty good shape. I normally spin 3x a week (stopped because the heat rashes me up and I'm trying to avoid known triggers), my cardiologist wishes all her patients had a heart like mine. My dad's pulmonologist says my lungs are strong. My biggest medical issue to date has been infertility.

I read stories. Stories of people who "shock" every 3-6 months without warning. Their blood pressure drops and wham, they're out. They've spent years trying to figure this shit out after suffering horrible illness. Me? I have hives. Pain in the ass yes, life threatening no. But was there a time... a time when their lives were like mine with just small little symptoms that were just irritating? Did I just get lucky to find an allergist who has knowledge of mast cell diseases and this is where I'm heading???

I have a girl's night out scheduled for Saturday. I'm a bit concerned about driving up there myself. At least now I understand the pre-cursors, etc so if I start feeling oogie, I know to get off the road and call for help. Still....

Marc has his Valentine's Day gift orders (we normally don't get gifts but)... as soon as we have a definate diagnosis.... we'll get me a pretty medilert bracelet.

Today was rough. Mom called to tell me my father's brother was dying. I wasn't close to him. In fact I was quite angry that when my mother called to tell him his brother had passed, all he could talk about was his medical shit. Well, I guess his shit was pretty bad too cause he has stomach cancer and hospice is being called in. I cried a lot today. Not so much for him (although no one should die that death) but more for his sons. I know that pain. The pain of losing a parent. It just brought it all up again. I was at work, not in a "safe" place. Shove shove shove the emotions down, get through my meeting, get through a few calls when my insides said, sorry - no more room in here and threw the emotions back up along with a nice hivey rash on my upper arms and a full out panic attack. One H1 and one h2 inhibitor along with half a klonopin and some deep breathing exercises I came back from a close call with my epi pen (much to the dismay of my coworker who is dying to stab me with it).

The though of going to work tomorrow is just hard for me right now. Part of me feels like I need a few days in bed just being alone to get this all straight but I know that that is definitely not the right path for me. I have 6 days till my appointment. 6 days till I can get some answers as to what this thing called mastocytosis means. It's going to be a looooonnnngggg 6 days.

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