Post-Treatment Progress

Mon Aug 03, 2009 11:58 am
It's been five weeks since treatment stopped at 32 weeks. The tormenting rash is almost gone. My skin still flushes and itches, especially on my back. My concentration has improved. The oddest thing is the return of the ability to stay awake all day. I walk almost every day, building myself back up. Saturday I walked a lot, much of it uphill. That's encouraging. For the first two weeks or so, I ate a lot, including lots of sugary stuff. That compulsion has calmed down. I lost a couple of the pounds I had regained. Overall my weight is still down 20 pounds, which should help with fatty liver. I'm discarding my biggest hide-your-body clothes and now have a few things that fit. Wouldn't it be great if the virus stays suppressed and does not resume damaging me?

New Shoes

I have new shoes. I feel so much stronger, I was able to go shopping. Replacing things has been put off such a long time as too much strain on the little energy I had during treatment.

Stopping Treatment

Treatment stopped in mid-June. My health just became worse and worse, and I could not take care of myself adequately. I was taking ribivarin and Pegasys, a form of pegylated interferon, self-administered.

Symptoms: Rash and thickening of skin increasing since mid-November.
It was like poison ivy on top of a bad sunburn.
Itching, somewhat helped by cool water, hydrocortisone ointment, and recommended lotion, Gold Bond.
Flushing, the heat radiating from my skin four to six hours at a time. Ice packs help, but I can't sleep and apply ice packs at the same time.
Fatigue and increasing weakness and dizziness.
Confusion, inability to concentrate on tasks.
Debilitating effects of isolation and poor nutrition.

My skin is already healing. I have been able to stay up more hours, though I'm still not sleeping much at night. It's a relief to make a decision and turn my attention to regaining some strength, and spending more time with people.

If I try treatment again, I will know that I need much more help for daily life than I thought.

Enough, Already

After seven months, no more treatment. Too much suffering, too debilitated. It will take months to clear out the the virus-killers. My skin has been slowly recovering elasticity and growing less damaged and tormented.

I'm at peace with my decision. Now I'm staying up hours more, continuously, seeking to coordinate with the rest of the world's activities and expectations.

Update

I feel lousy. Good news - no detectable virus.

At Peace Tonight

It's Friday again. I've taken my Peg-Intron shot and ribivarin capsules.

I've been in bed most of the week, with a few short walks, mostly to the grocery store. Today I read and enjoyed several articles in WIRED Magazine. What a relief to be able to think and take in information and ideas. Most likely this will not be possible again for several days, but it's comforting. It helps me believe there may one day be an end, or at least a significant amelioration, of my fogginess and low energy.

Did I tell you about the inflamed, red, itchy rash on the upper torso? Don't ask!

The second viral load test again showed significant decrease in the virus, meaning it is worth while to continue the treatment. The goal is "no detectable virus" at the end of treatment, and again six month later. Alevai - from your lips to God's ears.

Happy New Year!

Thanks, pixie and Elizabeth for your comments. Thanks to everyone who responded to my good news by phone or email.

During 2009, I will clear the virus. In 2010, I will resume some of the activities for which I am too tired now.