Re: Reasons I cannot commit to Tampa yet

[Guest guest]

hey, pollyanna,

want to go ahead and fill out survey for me anyway, i too am concerned about the

time away but am hopeful that i get more than 6 months without progression this

year!! everything i plan has a plan B, so it will go on with or without me! i

prefer with me. i know i am not at all dealing with the different factors

complicating your world and your health, so i cannot imagine where you are and

how you are maintaining stress as low! i am only dealing with the pls, that

just hasn't read up on the fact that it is a " slow progressing " illness!!! I

keep showing it the literature, but am not sure it can read, so i read it aloud,

but it ain't gettin' it!!! hang in there darlin' and run it slow! by the way i

don't know about posterior pericardial pain---nor anterior ones for that matter!

i gathered something with heart that is bad---gone to cardiologist yet? i do

know posterior pain just for the record!

hugs,

tawny

email from

Tawny H. Swain Castle, MA

Reasons I cannot commit to Tampa yet

Thought I might as well respond to the many inquiries about the

Tampa event and my attendance. That's 5 months away. Oh Gee's now I

have to tell my secrets.

First recovery from EBV - fulminating -is NOT easy. Anything is

better than the ashes in the urn I faced in March but EBV comes back

after a few good days and kicks you in the butt.

I am having a posterior pericardial pain with a diastolic pressure of

98. I also have a echo report from 2003 that reports a 'posterior

pericardial effusion which might indicate a chronic disease' plus a

recent abstract showing 7 deaths linked to EBV in the pericardial

fluid. The anti-viral and high dose prednisone (into month 3 now)

haven't kicked it yet. I'm trying to hold all stressers down. When

you are in this New Frontier knowing just about everything in the

same timeframe as the doctors it can be scary. The only thing Mayo

KNOWS is it is NOT a good time to take me off Aldactone. They did

add this SMZ antiboitic to ward off the opportunistic bad infections.

If I have any T-Helper cell symptoms we know we'll add Interferon or

methotrexate. The only other rare treatment to get rid of the anti-

neuronal antibodies is plasmapherosis which was done in one

patient.....and really wouldn't kill the virus in the pericardial.

If we do get the virus under control, I will then have to plan a

implanted pump and spinal cathter removal surgery...Hey remember how

this recent crisis all got started...surgical implant of pump and

spinal cath.

Remember Larry, Moe, and Curly....well on Tuesday I learned 3

financial files have been corrupted: my Pfizer 401K stopped

receiving and being matched out of LTD, My ton physician whom

I haven't seen in 16 months sent me a bill with late charges and

penalties when my balance was '0' when I left, and by business credit

card just had $2000 added to the balance which threw the interest to

30%. Did I mention I'm trying to keep my stressors down?

So ask me in mid-September? Deal? And I'll go back to being

Pollyanna instead of whining with all my secrets.

Hugs

Eva