sicker than bloodwork?

[Guest guest]

Barbara and all the rest who are struggling,

i hope I'm not repeating something, recently discussed, but years ago when I

was last active in the group, we discussed the FACT that there really isn't any

hard and fast correlation between LFTs and how sick we feel, how much we itch,

and how tired we are. I've recently discovered that I am yellow when my

bilirubin runs high normal--go figure. I've been sick a long time and have major

pain issues and still have some mysterious undiagnosed symptoms. I have been

sick with all my children teens and older and now sick with small kids (now six

and eight). I am not able to work. Some days I spend the day in the recliner. I

know that being sick 24-7 is much harder when you have young children depending

on you. But there are many blessings in have young children: they have kept me

as active as possible; they give me the will to live; they pull me out of myself

and my issues.

Another huge lesson I've learned is that when I used to base my peace of mind on

how well I felt, my latest blood test, how others treated me (including my

doctor), what might or might not happen in my future, I had no peace of mind. In

Charlton Heston's last public statement before he withdrew into the private

solitude of Ahlzheimers he said, " I must reconcile courage and surrender in

equal measure. " I feel those words. That's what it's all about. Honestly, there

just isn't a lot doctors can do to make us feel better. It is the nature of the

beast (in this case PSC) that liver failure is a slow and painful decline. That

being said, we can only decide how we will respond to those things we cannot

control. I know I've mentioned this before but once again. The best self-help

book (not counting sacred writings) I have ever read is Byron 's Loving

What Is. I also just reread CS ' A Grief Observed and that was very

inspiring. I wish we could all have a big huge group hug where

we could lighten each other's burdens and feel the wisdom so many have found and

the peace that can be found in understanding. Nothing happens to us; it happens

for us. It's one of my mantras. Take care, Cheryl ID, 49 PSC/AIH/UC '00,

fibromyalgia, etc. 6 kids ages 6-28, 1 grson, 2 grchildren due in July, 30 years

married

>

> It sounds like he is like so many of you - sicker than his blood work

indicates. This whole

> thing sucks and I'm exhausted and I know that this is just a taste of what's

ahead.

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> Barbara

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