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


Jeannine said...

Do you mind saying what meds you are taking?

How bad did your diarrhea get when it was at your worst and how is it now?

Thanks so much!

Anonymous said...

Where can you find the addresses for the Mastocytosis lists? I couldn't find any and would like to join them.

Lucille said...

Hi Bridget,

Just stopped by to see how things are with you. So pleased you are feeling better :-)

Bridget said...

@jeannine - it depends on the day. sometimes i am not too good about taking my meds honestly. Ideally I take 200ml of gastrocrom 4x a day, 150mg zantac 2x a day, 1mg ketotifen 1x a day, and 50mg atarax po. My stomach is generally ok as long as I'm mindful of what I eat...though that can be all over the place too.

@anonymous - they should be on the toolbar on the right side of the journal. The TMS online support group's address is"OnlineTMSSupport@yahoogroups.com"
and the masto-med list is "MASTO-MED@nic.surfnet.nl"

@lucille - how are you doing? i've been having good days and bad days...i found out that in addition to being d deficient, i'm b12 deficient, so i'm hoping getting shots for that will help.

how are you doing?

Gypsy Princessa said...

Hey Bridgit,

Wow, I read this and thought...this is just like me (egocentric beings that we all are...lol). Nicely put. You summed it all up really succinctly.

I find on good days that I'm on the computer a lot less because I can ACTUALLY DO stuff...so that might be another reason for not posing "Having a great week/month..." There is also a part of me afraid to post good stuff because historically, whenever I've posted something like "YAH! 4 weeks since my last blackout and shock episode!!!!" for example, within days the proverbial shit hits the fan and I'm down...

Anyway, really nice said. I'm on 4mg of Ketotifen/2x day...wonder if I can talk to my Immuno. Doc about reducing the amount? THink I'm on about the same as you otherwise. Do you take Singulair too? Reactine?

Gypsy Princessa said...

Sorry, I can spell...honestly. Bridget with an "e" not an "i"...ugh, can I blame brain fog?? lol....((hugs))

Jeannine said...

Why doesnt anyone talk about the product Dr. Theoharides formulated with qucertin and flavanoids..Seems he is a creditable reasearcher and I see him list on your blog...Just curious!

Bridget said...

i don't take it...do you? dr theo -is- awesome, he was one of the first doctors i met with actually.

Jeannine said...

No I havent but saw someone on another board saying he took it..will you see him at the conference? Or have a way to contact him...maybe we could find out more about it..