Month 11

I've been on valcyte for almost 1 year! I never expected to be on it this long but life never does turn out the way you think it will! Dr. Montoya's second trial has ended and I know that some of the patients who are still struggling he put back on valcyte since they were only on it for 6 months during the trial. I definitely think future studies should do a 1 year trial of valcyte with a follow up of how the patients continue to do. I am excited to hear what Dr. Montoya has to say at the HHV-6 conference. My doctor said she might be going to it so I'll have to get the 411 from her. I wonder why some people on valcyte respond immediately, I recall the lady from South Africa who was hiking and running 6 weeks into valcyte. Some people I have read about see improvement a few months after they stop taking it. My experience has been that it is gradually helping me. I wonder what my health situation will be like in a year from now. Will I be at 90% recovered or even 100%? It's hard to say what level I'm at right now because it is not consistent. On a good day I'd say I'm 75%.

I had some really good weeks in April. I got the valcyte flu all over again last week with swollen gland, sore throat,itching, fatigue etc. But I bounced back pretty well to a good stamina level. The pain I have can get in the way of my well being. I have some very bad back and neck pain and of coarse continue to deal with leg pain. I just try to stay on top of my pain medication and Tylenol as best I can. I'm a little worried I might have the liver of a heavy drinker when this is all over due to the many meds I'm taking that affect it! So I have a back massager chair and I did that last night and I think it bad it worse! Anyone with fibromyalgia have that experience? I'm not sure if a chiropractor would help or not. I've ruled out getting massage after last nights experience! I have been trying to be more active. I rode my little brother's razor scooter and the next day I could hardly walk. I still have pain in my thighs from it and that was on Thursday!This is typical of CFS/Fibro. I guess I have to keep in mind that I have been sick for a year and not moving around a lot so my body is going to have to get use to my activity level. I think for now I'll stick to my yoga. I am very grateful for the good days I have. Just in time for this beautiful spring weather. My family and I have been very prayerful to find a cure for my illness and we feel very strongly that this is the answer. I also have felt that the process will be slow, but that it will work!

I've talked about my aunt before who passed away from kidney failure. Towards the end of her life the kidney dialysis really started to take a toll on her body and she was very ill. I ran into a poem she wrote during this period and it really touched me as I feel I can relate to it right now in my own life.

A Journey of Faith
Once asleep now alive,
Once despondent, now I arrive.

Blinded darkness a clear bright sky,
Opens life, again I reply

Deep despair, hope appears
Where faith regains its hand over fear.

Desperation, fear and hate,
I cry to God “What is my fate?”

My child, my child, The Savior replies,
“This too I suffered when I bled and died.”

“Time is short, so carry on,
Your faith strengthened, now you’re strong”

“This life seems long and hard to bare,”
“It’s not my daughter, I’m always there,”

“When your mission on earth is done,
Angels will song praises that you have come.”

“You’ll sit before my throne above,
Be crowned with glory and praise and love.”