Tuesday, January 15, 2008

Sometimes it is hard reading the masto list. I am guessing the people in the most pain are the ones who are the most vocal, but sometimes i feel like I'm faking it. Sure sometimes I get flushy, my throat bothers me, I get weird blood pressure fluctuations, but in general things aren't so bad. i don't shock, I've never shocked, never needed my pen, needed my inhaler once. I take a ridiculously low dose of meds (the only one I'm maxed out on is gastrocrom) so sometimes I feel like I'm faking it. The fatigue, osteoporosis, bone pain and body covered with lesions are obvious proof (aside from my tryptase levels and urine histamine levels), but sometimes i feel like I don't get the whole thing. So many people are so angry, so resigned, so bitter...sometimes I don't know if my input is good or not. I mean, I'm not on the same level as many of those people. I'm not as healthy as a "normal" person, but I'm not as in bad a shape as many of my cohorts.

One weird thing is that some people are jonesing for the diagnosis. They haven't gotten it yet, they've had doctors tell them they don't have it, but they need it. i don't get that. I mean, having an answer to all the weird blood tests, the fatigue, the pain, it's great, but man, I'd trade it all in a second for a day of normalcy again.

I've decided to start crafting to kill time until I acclimate to my meds and can work again. Obviously I'm coating myself in protective gear, such as a hardcore mask, non latex gloves, and moving forward I'm going to wear goggles.


Anonymous said...

I can comment on the people jonesing for a diagnosis because I was one of those people way back. You said that you would trade anything just to have a day of normalcy again. But, I think the thing is, is that the people jonesing for a diagnosis are FAR from living a normal life and are probably pretty miserable in general and know, with the gut instinct that each of us intuitively has about our OWN body, that something is WRONG. That desperation for help and for an answer, probably feeds the NEED for a diagnosis. There isn't a "normalcy" for them to trade with. They are just all out miserable and suffering. I would have rather been dead than continue living with how I was feeling back prior to a diagnosis five years ago. I would have not stopped looking for an answer until I found something that helped me. It took several doctors telling me I had the wrong thing until finding Dr. Castells (ie more than one doctor who said I had no mast cell issues going on..so yes, I was originally one of the people told at first that I didn't have the disease...then I found Dr. Castells..thank god!). I agree that I would love to trade my diseases for a day of normalcy again, but it is ME pushing to find the answers that led to me being helped. Just sharing a different perspective.


Bridget said...

Ah see, for me the diagnostic process was ridiculously easy. I had been having minor symptoms for years, the UP, stomach problems, exhaustion, the unexplained but asymptomatic brain lesions, etc. Then I had an MRI (without contrast) and all hell broke loose. I never went into full shock, but I did everything save for the throat closing up. This went on for a week, I lost about 15 lbs during said week, and developed vasculitis all over my torso.

I went to see a dermatologist who happened to work with Dr. Castells and he noticed the UP covering my back (something I was unaware of, I only knew about the few on my arms and chest) and immediately knew what was up, biopsied one, called Castells and asked her to fit me in, did the 25 hour urine histamine and both of those were high enough so that I got my diagnosis pretty quickly and honestly effortlessly.

But yeah, I knew for a long time something was wrong, but I didn't know what, and had never heard of ISM. I guess from where I am coming from, getting my diagnosis was very quick, efficient, and unexpected, so I guess I am misjudging the whole process for other people since I presented such a clear cut case of ISM.

I do however worry about the whole concept of self diagnosis, since the mind is so powerful, and if we have it set on "I have _____" we can end up ignoring very valid differentials , go through med student syndrome where we become more symptomatic because we're processing the information on such a high level that we begin to experience things we've read about...stuff like that genuinely concerns me.

I'm not trying to belittle the people who have not gotten a diagnosis, or saying it is all in their head, but I guess what I ineloquently was trying to say is that there are many other diseases I'd rather ardently pursue than this one, if that makes sense.

Kim said...

hello, I understand everything said...I also suffer with SM...lots of pain, huge "rash", soooo tired....it gets really old. I try to be thankful and usually I deal with it pretty well, but sometimes..... I'm so glad for the good days...nice to find others in the same "boat" with me :)