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)


Kritter Krit said...


I'm pretty sure I have systemic mastocytosis, but so far the physicians where I live (who admittedly don't have much knowledge about the disease) haven't been able to confirm it in tests.

For about a year and a half now (but increasingly bad over the past several months) I've had debilitating nausea (it's HORRIBLE in the morning - I wake up retching), loose stools, a constant feeling of tightness in my chest (often accompanied by a dry cough), and I constantly erupt out in hives. I'll also get these tan/brown spots that when scratched will get kind of flakey around them. They get REALLY red and itchy and then in about thirty minutes they will subside and leave this raised tan spot - about the size of half a pencil eraser.

My beta tryptase blood test and 24-hour urine test came back okay, but a skin biopsy came back showing increased mast cells. Can you please give me some advice?


Bridget said...

It sounds like you could just have the skin manifestation of masto (i think it's called chronic urticarea) which can be just as frustration and debilitating. if you're in or near boston i'd suggest seeing Dr. Richard Horan (he's an awesome dermatologist) otherwise I would try the tmsforacure.org website to see if there are any doctors in your area who are familiar with it

WinnyNinny PooPoo said...

I have gifted you with the One Lovely Blog award. You can check it out on noextendedwarranty.blogspot.com.

I agree - there is more to life with chronic illness that doling your spoons out. I have branched out to other cutlery of which I have drawers full.

Since it's been awhie since you last posted, hoping your lymph gland problem turned out OK!

David said...

Hi, my wife was diagnosed with Systemic Masto about 2 years ago, but has obviously had it since being an infant. She has been getting a lot worse lately, over the last 2 months she has become almost unfunctional. Her fatigue has gone to where she is sleeping almost 17 hours a day now. She is only on Allegra, Zyrtec, Rintanidine, and occasionally benedryll.

You seem to know quite a bit about this and are in touch with the right doctors.

Your on Gastrocrom right? Did that help fatigue at all? Bone pain? Her bone pain is severe now, but it is hard to tell because she is a paraplegic as well, so we don't know which one is causing the pain? Anyway, if you could let me know if Gastrocrom is what we should look at adding. Or if you know of something else that might help, the doctors we are seeing are less than helpful. At least they got the diagnosis right.

Your blog has helped me understand more. I hope you keep it up.


trec-r said...

Great blog. Do you know of any other blogs about Mastocytosis? I am trying to make a list for a website my wife and I just started Mastocytoma.org

Ami said...

Hi Bridget...
When you get on this blog, I would like to ask you a question about your treatment in private... I have SM as well.....
or shoot me an email and I will email you the question.. .thanks girl!



Bridget said...

Ami, your email address doesn't seem to work :(