Wednesday, January 14, 2009


i get my bone marrow biopsy. if anyone has any stories to share (ideally positive) i'd love to hear them. i'm scared witless to say the least.

Sunday, January 4, 2009

meds help

I can be reached at


Seriously, my masto has been out of control lately. I've got some sort
of viral thing going on apparently (one of my lymph nodes is swollen
plus I have some fluid in my ear) and I'm guessing/hoping that is what
is exacerbating it?

Anyway, I'm undermedicated for my masto. Unfortunately, Dr. Castells
has been out of the office for ages and therefore not around for me to
do medical trials in her office (I have one scheduled for later this
week thankfully) but I've been dealing with the tachycardia, metallic
taste and general uneasiness for a few days now. It's really terrible.
Is this normal to go through? It's really dreadful and I get nervous
that this is progressing even though my tryptase level hasn't
budged..but of course in the back of my head I get worried that it's
somehow turning into aggressive or leukemia something.

Anyway, we want to add Singulair to my meds this week and I was
wondering how everyone has fared on that. I just feel like so often I
see, "well I was on ____ for a while until it caused *insert medical
issue here*" and I think I end up feeling discouraged before I even
start something since all the anecdotal stuff I read seems negative.

As it stands right now I'm taking:

200ml Gastrocrom 4x a day
150mg Zantac 1 or 2x a day (i'm bad with remembering this one)
1mg Ketotifen 1x a day
.25mg Klonopin 1x a day
50mg Atarax either 1 or 2x a day as needed (I'm not sure what the
ongoing status of this one is going to be for me, if I am going to
take it ongoing or if I'm only going to be taking it right now since
everything is acting up)

What else is there really that helps with symptoms? What else should I
be asking about in terms of things to add to my meds?

My PCP and Psychiatrist aren't too keen on Doxepin and want to talk to
Dr. Castells about it (though she hasn't returned their calls), but
would that also make sense right now? I just want things to settle
down again. I feel like I was faring really well before that stupid
car accident in Sept. and ever since then things have kind of been
chaotic. I wish we could keep some sort of ongoing statistical
database for how many people are on _____ and how much success they've
found with it...something like that would be super helpful.

Anyway, any and all help would be MUCH appreciated.