Tuesday, September 15, 2009

on support groups

i posted this to one of the masto lists in response to someone asking essentially, "well if i get diagnosed, that doesn't really make things better does it?"

and yeah, honestly, you don't get diagnosed with something like this and then get cured. it's not even the same as other chronic illnesses where there are tried and true treatments that work for the majority of the cohort. since we're all so different in our triggers, it's a long process of trial and error to figure out what makes us feel fine vs. what sets us off. There are no easy answers.

but then, in life, when are there?

Sometimes I think that these lists are a double edged sword. On the one hand we have this strong and vibrant community of people we can interact with who know what we're going through. They get the weird idiosyncrasies of our lives. They understand how difficult it can be to go out to a restaurant or the ick we may feel when someone walks by wearing too much perfume. The downside is that we mostly seem to post to the lists when things are going bad. I know that when I'm feeling super well, I'm not asking questions, I may not even be home using my computer, so chances of my posting, "WHOOOO 3 months and counting without shocking" are pretty low.

When I first got sick, I was so sick I ended up with gastritis and lost like, 40 lbs due to malnutrition. I could not even make it to work without flushing and sweating and/or vomiting or having diarrhea. I started throwing up blood because the lining of my stomach and esophagus were so shot. It was absolutely terrible, and my husband had to start working from home because I was too scared to be left alone because I was essentially shocking every day and in the ER at least 1x a week. to put it bluntly, it fucking sucked and i saw no decent end in sight. i never thought about offing myself or anything even remotely that dark, but i remember feeling like i was about to turn 30 and my life had completely and utterly fallen apart. i was angry and really really angry because everything i'd worked towards had just collapsed and all i had to show for it was a torso covered in hives and some epi pens.

I started on gastrocrom and within a few months things really started to turn around, especially as I added more antihistamines and the like to my regimen. Now I work on jewelry, go visit friends for overnight visits in other states, exercise, ethan's back at working at the office...life is not 100% like it was before I got sick, but I've adapted as best that I can. Up until a couple of weeks ago I hadn't shocked in months...and when I did shock it wasn't really that bad...I was able to get it under control with meds, but more importantly, I -knew- what was going on. It was annoying it was happening again, but it didn't feel like the end of the world.

So yeah. I can only speak for myself, but I know that I don't post about my good days because I want them to be unremarkable...they should be in the majority and not warrant mention, if that makes sense. Yes my life is more restricted than it was when I was younger, and yeah that's kind of lame, but it is what it is, and all I can do is learn the best adaptive behaviors possible to move forward and be as fulfilled and happy as possible.

So that is the problem with mailing lists...we see the more negative sides of the illness since we're seeking support regarding living with an illness, not just simply living...so of course people write about the less fantastic shades of life. they're still there though

Monday, September 7, 2009


So what are you planning in terms of this fall's flu season since it's apparently going to be harsh? Getting the shot? Not getting the shot? Fill me in!

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:


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.

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.

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.