Tuesday, October 27, 2009


i have not had a lot to say lately. my health went waaaaay down south after the conference, though i think that was more related to my trying to taper off one of my meds than anything. apparently not a good idea. nothing feels worse than having a hardcore relapse, especially when you've been feeling moderately ok.

otherwise things are ok. i cut my hair short and dyed it purple and black, i decided i needed a change and i love it.

also for halloween this year i am going to be a skeleton, specifically one of those mexican day of the dead skeletons. it's a pretty neat costume that involves coating myself in black and white greasepaint and crystals. i like halloween a lot, i like costumes a lot in general. i like the opportunity to step outside of who i am, even for a short time i guess.

the conference itself was good. i was surprised at how comforting it was meeting so many other people dealing with masto...and i was duly impressed with how many of them seem committed to living their lives to the fullest...i felt sort of inadequate in comparison. i gave a presentation which was well received (though to be fair i spoke after a hematologist who told us we all had cancer - check the TMS page for the board's rebuttal on that one) and all in all i had a good time. i learned some, but i sat out the panel discussions that i thought would either stress me out too much (osteoporosis) or ones that didn't apply (mcad/pediatric stuff)

people eat a lot more food than i do. which is not to say i'm skinny, cause i'm not. but my diet is really really limited, and a lot of that has more to do with my sense of fear than anything. food and anxiety are my top triggers. so one of my goals is to try to expand upon my diet somewhat.

otherwise i am not too sure what to write about. i did a urine histamine for dr castells last week that came back as -12- so i'm guessing there was some sort of error there since last time i did the test it was 600. i'm still waiting on my tryptase and all of that good stuff.


Faith Berry said...

Thanks for telling us a bit about the conference. Have hardly heard a word about it!

Good luck with expanding your diet. Food is such a big challenge for me. I think I have fructose malabsorption in addition to whatever is going on with my extra mast cells. I finally got that it's not just about fruit, fructose is in just about all fruits and vegetables and then there's fructans in wheat and brown rice. People who have a severe case find it hard to find foods they can eat too.

Jeannine said...

What kind of symptoms did you have after the conference?

Gypsy Princessa said...

Glad you love Halloween...it's a wonderful thing to do to step outside of ourselves into alter ego's and to a place to have fun with ourselves.

My Immunologist once described Mastocytosis as "the cancerless cancer"...because the cells morph and replicate themselves like cancer cells do...and attack the body.

Glad you made it to the conference. Your discussing 'fear' about food and stress is good, and real. I've become increasingly more afraid of food and environments (like conferences) because there's soooo many potential allergens. It's important to embrace those fears, and to challenge ourselves to step beyond them (where it won't kill us.) Given our experiences, those fears are aptly placed...so, please, be kind to yourself about them.

Glad that your talk was well received. You contributed to an important event; and to everyone's lives. Thank you.

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小名 said...

你的部落帶給我愉快的心情,感謝~~ ....................................................

Sara said...

Hi, I have masto as well and I've enjoyed scrolling through your posts. I hope you don't mind if I put a link up to you:)

Anonymous said...

hey I'd love to get in touch with some of you other people with mastocytosis ... I've had it for 2 years and it's getting worse :(

helps to know I'm not the only one who got the shaft - lolojamess@yahoo.com Sarah

九份 said...

Always read stuff that will make you look good if you die in the middle of it.............................................

Anonymous said...

i have masto too
it sucks
i knowhow you feel
good luck