Monday, September 7, 2009

couple things

This year I'm speaking at the annual TMS Conference (come see me be witty and mock pics of me getting my bmb!), and in addition I'm going to be taking part in some walk-a-thon fundraiser thing too. i feel like this is almost more important in light of the fact that a young woman recently passed away from mast cell leukemia (the worst variant of this illness) and it's really thrown me for a loop. i've only been "sick" for a couple of years, but aside from the 83 year old guy I mentioned in an earlier post, or Christopher Reeves (who had huge comorbid issues to contend with) this is the first time i've heard of someone dying from this. She was close to my age and it just frightens me. I think I'm almost more frightened since for whatever reason I can't determine I've been having shocky episodes lately. The timing was bad I guess (not that I really have any right to complain in this situation, as I only have ISM)

here be the link if you feel like donating:

http://www.tmsforacure.org/annualconferences/index.shtml#walks

it is, as always, appreciated. I feel sort of stupid posting this here, but in case any of you are not involved with the TMS or hadn't heard of the fundraiser, it's worth a shot at least.

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someone posted some information on masto and the diagnostic process, so i figured i'd share mine in case i hadn't.

long story short i've never been healthy. i was born way premature, jaundice, incubator, the whole 9. When i was little i'd get pneumonia at the drop of a hat. got mono twice (yet never chickenpox, or any variant of the varicella virus), allergies, asthma, whatever. i've always had problems with fatigue and bone pain...though my doctors didn't take me seriously because i -did- stuff. instead of bawling on the couch i worked full time, went to school at night, worked out...i pushed myself so hard to get through the fog that was in my head that it seemed like i was healthy.

in 2007 i started having severe abdominal pain. a CT scan showed some problems with my intestines (yay) but also some sort of "thing" in my spine. I think it was a hemangianoma. so i went to have an MRI of it. the mri was aborted after a few minutes due to my back getting hot (my back is tattooed). waiting for my partner to pay for the parking at the hospital, i was nearly dropped by this overwhelming sensation of bad. it felt like all the moisture had been sucked from my eyes and skin, and this disgusting metallic taste filled my mouth. my face went numb, my heartrate went through the roof and i nearly collapsed getting me to the ER. no one knew what was wrong with me at the time so it was chalked up to panic attacks. 3 days later i was vomiting blood, both the black gritty stuff from your stomach and the bright red stuff from your throat. still panic attacks. a month later i'd lost about 40lbs and was sickly thin, still panic attacks. modern medicine someone missed that it was anaphylaxis. good job Beth Israel, that's why I tell people to avoid you like the plague now.

my stomach started mottling and i went to see a dermatologist who noticed spots all over my back and arms. i'd had one biopsied a few years prior and the results were "high in histamine" though no follow up was prescribed. the new dermatologist nearly went through the roof when he saw this and apologized for his colleagues negligence. from there i had another biopsy, extensive bloodwork, and a 24 hour urine histamine. the biopsy showed high histamines, the blood showed high tryptase, and the urine showed high histamine. from there i was referred to a masto specialist who redid the tests and eventually everything was reconfirmed by a bone marrow biopsy.

so that's it in a nutshell.
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i've been really pissed off the past week. last sunday i shocked in a car (which i wrote about) and assumed it was an isolated incident. then this past friday, reacted again in a car (different car, same model. it's possible i've developed a sensitivity to german cars i suppose. ok not really). there were no similarities in my diet or behavior on either day as far as i can tell. i don't know if it was aftershocks, my kidney being a jerk again, a virus, or something else. all i know is that i'm not too keen to have had two episodes so close to one and other. i sent an email to two of my masto doctors asking for advice so we'll see if i have to up my meds. good times. today i spent about an hour in the courtyard of my building hooping, as i'm trying really hard not to let this get to me. give me a week shock free and i'll be set. aside from hating the shocks/episodes/whatever, i hate how the meds make me feel. i've been way hesitant to use epi (my experience thusfar has been using an epi inhaler, never the pens) but i hate how atarax makes me feel. really stupid and slow.

ANYWAY hopefully my welcoming september in by being all reactive is over with and now i can go back to things being ok. i'm trying way hard to be optimistic, especially as i have a ton of stuff to get done and don't feel like letting this get in the way if i can help it. because really, i get so annoyed when people get all overwrought about this sort of thing. i understand that illness = suffering at times, but i still firmly believe that our perspective plays a huge part in how we deal.

12 comments:

Anonymous said...

Bridget, I was interested in reading the story about the young woman that died from mast cell leukemia. Could you please tell me where you heard that news. Thanks
Tricia

p.s. have to post anonymous because my google account isnt allowing me to leave comments.

Bridget said...

tricia,

i don't have a lot of information. all i know is that a young woman was medi-vacced to stanford for treatment, however she did not make it. the first i heard of her was when she was first taken to stanford earlier in the week.

i'm sorry I don't have any more informaiton

Anonymous said...

Thats ok. I know it's rare, but it just scares me that people can die from this disease. It's also really sad that she was so young. Thanks, Tricia

Bridget said...

tricia,

mast cell leukemia is -really- rare. like, i think this young woman's passing is the first that many of the other masto patients i know have ever even seen...i know my doctor has only seen it twice,

Bridget said...

tricia,

it's super scary. i had a bmb, and my doctor was apparently able to predict though genetics that i am in a super low risk category for my ism progressing to asm or msl so hopefully she is right on that.

regardless, no one should have to die from this and i do hope that testing will catch up with us

I ♥ NY said...

hi bridget,

i am a co-chair of the masto "walk thingy" haha... so i'm guessing i will see you there.

i'll also be at the conference for the full three days, as i'm helping out the media relations chair at tms. i look forward to hearing you speak and to meeting you.

on another note, hopefully the money tms raises from the walk and conference will fund research to prevent deaths like the one you've described!

best, kristen

Jeannine said...

Do you know if there will be DVDs available from the conference so those of us who cant make it will be able to purchase and see it?

I ♥ NY said...

Hi Jeannine,

I can check with TMS's media relations chair and get back to you!

Kristen

Jeannine said...

That would be great! What is your story with masto Tricia?

I ♥ NY said...

Hi Jeannine,

There will be a DVD of the conference available on the TMS website some time after the conference so check back later in Oct. for that!

Thanks!
Kristen

Anonymous said...

Hi there Tricia. The name of the girl who died from mastocytosis is Esrin Hedman and she was 27. Here is her facebook support group: http://www.facebook.com/search/?q=mastocytosis&init=quick#/group.php?gid=137611974520&ref=search&sid=720753042.929591662..1

I know this could be a very difficult subject for us but I think that we must try to figurate what was wrong with her... I still believe that is extremely rare to die from this, especially if you are still Young.

Anonymous said...

I rented a car last week for a trip for work. I had reactions two hours or so from the normal time I usually take my allergy meds. One night was pretty bed...I had to tell my hosts that I was allergic and went to bed praying I wouldn't have to have them haul me to the ER. Did you ever have allergies...and when you say 'shock' do you mean anaphylactic type of shock...like allergies? Thanks!!!