Re: Jerry - sorry for the pitty party.

[Guest guest]

Carole ..I told you that there are always people worse off . I raised

4-count them 4 girls in their teens at the same time, alone after their

mother died... ha!.. It was enough to drive me to drink... if I already

wasn't doing so .

I'm sorry,.. of course, I know that there can be one bad moment after

another adding up to a day, but I never had all the problems you

had...... I was just trying to help you get out of a funk....actually I

admire your strength .

Are you working?... why don't you look into SSI or SSDI. I am on SSI and

thru it medicaid, which pays all my health bills including meds....But

this is in Ohio so I'm not sure how your local human relations dept.

works. If you don't work and your husband is out of work consider

welfare aid . I was on Aid to Dependent Children

when I was broke and sick and received food stamps, money and medicaid

till the kids all turned 18.

I'll find my info on those little red spots... I can't remember what

they are called right now but I believe they are caused by increased

pressure (lie varices and hemorrhoids) and little cappilaries that break

near the skins surface....they are nothing to worry about. I had spider

veins all over my face and chest that went away after Tx.

Hang in there and keep on trucking and keep me up to date on your

happenings.

You can complain and bitch and vent all you want that's what we're here

for.

When I was in detox the first time in '78 I got really wound up and they

gave me a choice of the psych ward or the heavy bag...I punched the

living crap out of that bag and it was... just fine. (Cat Ballou

reference Lee Marvin)

love jerry

[Guest guest]

Carole.... I forgot .... I don't understand why your imuran was

increased, it is not a pain killer nor an anti-inflammatory. That joint

pain is caused by inflammation and the prednisone is what relieves it

not the imuran....I think your doctor has brain dyslexia....you should

ask him/her about it'

love jerry

[Guest guest]

>

> From: " toots_k <toots_k@...> " <toots_k@...>

> Date: Mon 30/Dec/2002 07:40 GMT

>

> Subject: [ ] Jerry - sorry for the pitty party.

>

> 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

>

>

>

[Guest guest]

Jerry-

The reason being was I was just fine - having little or no pain

(aside from upper right quad pain) and no low grade fevers until my

former doc decreased my immuran from 150 to 75. Since the increase

in the 'autimmune' symptoms came just 3 or 4 weeks after the

decrease, he believed that was what made the change. He says the

fevers are of course my immune system - in his opinion trying to kick

back in to over drive or attack, so to speak. The old doc kept me on

the 150 immuran over a year with hopes it would get my immune system

to back off. (Then when I told him the symptoms were coming back,

including the fevers, he said I was just depressed, and saw no need

to further refill my meds. I guess he beleived I was some how cured

of an incurable disease. What a putz!) He is also the jack ass who

saw no reason for another biopsy. When I would have a flare, and as

I said they were usually real bad, he would say it was very important

to do one when things calmed down, since my numbers were so bad. But

when things would calm down, then he would say it wasn't necessary

because the meds seemed to be doing a good job. Go figure. My new

guy finds it real important to do - given I have lost a beautiful

cousin to this disease a few years back. Same prob's - It hit her

hard and fast, and the docs tried to just call it in. She died 3

months after her son was born. We don't want any repeats here.

I had no idea how bad my 'flares' were until I joined this sight.

When I started seeing people say they had very high numbers at just

700 or 800, I realized why they freaked so much when they saw mine.

When I was first Dx, they firgured they were going to need to

transplant then. WAs just reading initial hospital findings from

when I was in OHSU just the other day. My AST was over 7000, my ALT

right at 6000, and my total bilirubin was over 20. They told me then

it was amazing I was concious and alert, as most patients are never

even 'alive' with numbers like that, let alone at the very least

comatose. Before they sent me there my GP and GI doc were preparing

me for transplant. I guess when your total bilirubin gets to a

certain number, they feel transplant is necessary? They womped me

with 300mgs Ursodiol, 80 mgs pred, and 200 immuran for the first

month. Then kept ursodiol the same, lowered prednisone to 60 mgs,

and immuran to 100mgs - kept me there for six months. You can only

imagine how quickly I got the 'moon face' as they so kindly call it.

By Christmas 2 months later, there was no wearing a dress to the

company Christmas Party. My legs looked like two tree trunks! The

swelling in my legs became so bad I had to use crutches, a cane, then

a wheel chair. So now they try to keep me off the prednisone as much

as possible - not to mention I fight them all the way about it. Quit

my meds myself two times because I was tired of how it made me feel.

So any way, my new doc fealt the decrease in the immuran was what was

causing the increased immune response. If it doesn't improve a bunch

(and it hasn't) he is going to try 25 mgs more bringing me back up to

the 150. If that doesn't work, then I will be forced to go on those

damn steroids again. I can not tell you how much I hate them. As my

doc says - I don't tolerate them well at all. My legs and arms swell

so bad on them, I lose circulataion in them. Also not a good effect

I am sure you can agree. Actually never have tolerated any drugs

well, ever. That is why with all of those abdominal surgeries I

opted to not take there pain meds, and just went for a tylenol or two

instead. But, we do what we have to do, right? I can't change the

need for them now, but I can try to not have to take too much, can't

I? Maybe I am just being rebellious.

Also, God Bless you for raising those girls alone! If they were

anything like mine, they each had one or two friends around all the

time too. It absolutely amazes me how fast these dainty little young

ladys can put away $150 worth of groceries! I always wanted to have

more kids, but hysterectomy at 25 stopped that for me. My husband

says it was a blessing in disguise! We always have 5 or 6 of them

around the house at all times. One would think that would mean I

have lots of help, right? But I wouldn't want to ever have it any

other way. They have had such sweet wonderful friends over the

years. And my husband and I have always had great relationships with

them too. Hell, when My girls would go to grandmas for two weeks in

California, there friends would come and stay the night here anyway.

Tomorrow night my girls have there anual New Years Eve Party. Been

doing it since they first started elementary school. Look forward to

it every year. This way, I always know where they are and that they

are safe.

Hope you have a wonderful New Years Eve/Day! Lot's of football for

ya'. You enjoy.

Love,

Carole K

-- In , gefox@w... wrote:

> Carole.... I forgot .... I don't understand why your imuran was

> increased, it is not a pain killer nor an anti-inflammatory. That

joint

> pain is caused by inflammation and the prednisone is what relieves

it

> not the imuran....I think your doctor has brain dyslexia....you

should

> ask him/her about it'

>

> love jerry