Jerry - sorry for the pitty party.

[Guest guest]

Hey Jerry!

I knew all you said about not letting it get to me, was just having a

bad night. I didn't get into all the detail as I had droned on

enough. But have had a serious 'blow out' with my family, which

started with my mentally ill sister going a bit violent on my

daughter. She is o.k., but very shook up. It's been a bit of an

emotional roller coaster for a few weeks around here. A deeply loved

sister in law/favorite aunt to my children is battling breast cancer,

and not winning. And on top of every thing else, my husband is

losing his job - which in turn means we lose insurance. I can't

afford that. Not only do I need my own meds covered, but worse yet

my daughter is a severe asthmatic, and can not survive with out her

meds. So we are pretty high strung around here, trying to concoct

ways of 'stocking up' on our meds. So things have been heavy, yes.

But please don't get me wrong, I still know my blessings. I keep

reminding everyone around here that they can take everything away

from us (with the loss of the paycheck), but they can never take us

away from each other. I think that is why I cracked in my post the

other night, just ran out of my pollyanna juice for my self. Just

been a whole lot to deal with all at once, and not feeling well most

of the time seems to make it even more of a struggle to deal with.

But I will tell ya, my little key chain with the serenity prayer is

going to wear out from my holding it and rubbing it as I 'chant my

mantra'. Been a long time since I have needed to do that.

But I do appreciate you words of encouragement. You are very right,

there are those worse off than me, and I try to remember that most of

the time. I keep saying what I really need is one of those leather

bags boxers use, and my attitude will adjust itself up right quick.

I keep asking for one for birthdays, christmas, mothers day. I don't

think they take me seriously. (Maybe I should put on the old gloves

and give them a poke or two - bet they buy me one then!) But I have

another birthday in two weeks (yech) so maybe they will buy me one

then.

And I don't know why that biopsy hurt so bad, but I figure if I stay

positive about it, it is worth the pain. The not knowing is a whole

lot worse than three days of pain. I had my immuran increased back

up to try to quell the muscle and joint pains, and low grade fevers.

My old doc dropped me in April from 150 mgs (which I had been on for

over a year) to 75 mgs, with no tapering. My joint, muscle pain, and

low grade fevers came back strong about 4 weeks later. My ALT and

AST only increased minutely. The doctor thinks that not only was the

drop too large too quickly, but that we have the disease in contol

enough to keep numbers o.k., but that it is still fighting hard to

win. That my immune system just doesn't want to 'quiet down'. When

ever they have dropped me off meds or tapered way down, it takes a

matter of just a couple of weeks, and my LFT's are in the thousands

again. They say I don't need the steroids because they are only for

treating inflammation, which they say I don't have any more with my

numbers being in normal range now. I have been off of them for over

a year now. My last flare was in April of 2001 - Alt and AST high -

one was over 4000 and the other over 3000, with total bilirubin at

9. And that was my mildest flare. I seem to go hard and fast with

out enough meds. But respond quickly when they hit me hard and fast

with the meds. Usually start out at 80 mgs prednisone, and 150 of

immuran. This time they hoped with keeping the immuran high for a

long period that things might soften a bit. I was thrilled when they

cut it back, because it makes me so fatigued feeling. But so does

the fevers and pain. So at least with the higher dose, I don't have

to take pain meds, and I don't get sick. At least not sick from pain

meds, now colds and kidney infections are another story.

So the red spots are something that can be expected with the

progression of the disease. Beleive it or not, that is a bit

comforting. At least it isn't a sign of something new!!

Thanks again for all of your concern and help. I am getting better

in the mood department. (Oh, did I mention all of this is going on

with TWO teen age girls in the house?! If that alone wont make you

crazy I don't know what will!) Looking for a job, which keeps me

mind off the other stuff. If nothing else, poking my jelly belly is

always amusing. Hope you have the best New Year ever!

Love,

Carole K