Tuesday, July 13, 2010

hello hello

not much to update on the health front. my tryptase went up some, but by like, 10pts which is essentially negligible. I've flown 3x since my last post, the most recent was to move cross country from Boston to Santa Monica.

This is going to be an intense experience. In Boston I was spoiled by having some of the best healthcare ever available to me thanks to B&W's masto center, but here I'm on my own. There is a masto doctor in Long Beach, but I don't know much about him (he's a pediatrician who sees adult masto patients) and that's all good and well (though about an hour away)

I will go see some of my masto doctors in Boston in Sept as I am going back there for a wedding and my doctors worked to fit me into their schedules. Considering I'm relatively stable and only saw them once every few months, I think I could even keep this schedule up if need be.

Lots of acclimating going on. right now I don't have the majority of my stuff (we hired movers so it's in transit) and am staying in a furnished apartment.

I've noticed some things...I don't care about my health lately, or more specifically, I'm not hyper focused on it. I've been eating new foods (i've been adhering religiously to the low histamine diet, and even then i've been really scared to try new foods, but i'm slowly branching out) and trying new stuff when my husband isn't around. i went for a long walk alone to the beach yesterday. i haven't gotten a pcp yet.

i mean i know i need to do that last one, and i'll work on it this week, but the fact that i'm not freaking out...that seems good. it seems like acclimation.

one thing i'm curious about exploring out here is medical marijuana. i have had an increase of bone pain (i finally had a nuclear imaging test done in...may? which showed lesions in my spine and hip) and i sleep poorly due to sky high pgd2 levels and i'm guessing that weed could help with those things. i don't even know how one goes about it but i think it might be worth pursuing since I didn't fare too well on aspirin (i am going to try it again) and i don't want to fry my liver with tylenol.

otherwise, not too much else to report i guess. i have a swollen lymph node on my neck i might need to have biopsied, though chances are it's irritated because i've been getting all creative with my hair lately and i have some scalp irritation. of course i was all OMG LYMPHOMA but my doctors all told me to calm down (this was pre-move obviously)

Sunday, April 18, 2010

i'm so bad at keeping this up

I've been curious/concerned about facebook lately and its influence on the masto community. recently this sort of meme-thing went around about how Christopher Reeve had mastocytosis and it might have played a role in his death (i guess the story goes he had an anaphylactic reaction to antibiotics) Now, I don't know the specifics of his death, I wasn't there, I don't know the Reeve family (though I do support their foundation, as even though they don't support masto research, stem cell stuff may help us in the future) so I can't comment on whether or not there is any validity behind the claim that mastocytosis killed Christopher Reeve. I mean it's possible. It's also known that he had a severe spinal injury that most people don't survive. I know when I get a cold or cut or bruise myself badly my mast cells flare up into full effect. I can't even imagine the impact of a spinal injury would do, of what being a quadriplegic would do to the mast cells.

What I -do- know, without reservation, is that even with mastocytosis, Christopher Reeve was superman. He was a student at Cornell, a stage and film actor, he was an athlete, an equestrian, he was asked to run for congress....he had a ridiculously full life -and- he had mastocytosis. He did all that in spite of the disease we have.

Don't let the circumstances of his death (which are cloudy) overshadow the fact that he achieved a lot. he lived. fully.

What upsets me is that i posted a very abbreviated version of this on someone's page on facebook (who constantly posts about masto in the most negative and ill informed light, inferring we're going to die, that we will need organ transplants) and they "unfriended" me and then wrote some passive aggressive shit about me.

Now, I'm all for forming a community for people who deal with this disease. I think it's crucial, I think we need each other. But we also need to not throw daily pity parties and spread around dangerous misinformation too...and I see a lot of that happening on FB, way moreso than I do on the various mailing lists that I've written about in the past. It's interesting because both the mailing lists and FB provide us with community, but they seem to come from completely different angles. I almost get -scared- when I feel like I'm "teaching" someone who has masto about their disease, especially if they're being very vocal about stuff that doesn't make sense.

None of this makes sense. We'd need to be MDs or PhDs for this to all make sense, and I get that. But I guess I just am wondering if I feel the need to be educated more important than the need for masto-friends...But don't take this to mean that I don't want masto friends, because I totally do. I want people that I can relate to, who won't look at me with pity or fear if I get flushy or rashed up.


In other news, I might have to step on a plane soon for the first time since my diagnosis. It's still very up in the air at the moment, but it's quite nerve wracking too.

Thursday, April 15, 2010

not much to say other than

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Thursday, March 11, 2010