2-months post valcyte update

I have been going to an acupuncturist about twice a week for the last 6 weeks. It is helping my pain. I haven't had a loratab for over a month and I have been taking less of the tramadol as well. This is a huge improvement. I go to lotussprings acupuncture. I highly recommend this clinic. It has been a lifesaver for me. My pain has reduced so much since I started acupuncture.

If I compare myself to were I was at a year ago I have improved so much in each area: stamina, energy, cognitive function. I had a week were I was really down and out and sleeping all day accompanied by the bruised feeling in my head and itching, but that has passed. I went to Education Week at BYU-Idaho last week and was able to go to two classes each day. So far I have not had pay back and I've been home since Sunday. My biggest symptom right now is fibromyalgia pain all over my body. Hey I'll take dull and achy pain if I have stamina and energy.

A lady I've talked to who has been off valcyte for around the same time as me recently met with Dr. Montoya and he is still stressing that post-valcyte you need to plan on resting for 12 months and not over do it! It's always nice to have that friendly reminder because the temptation to over do it on those good energy days is always there. Montoya has not yet released his information from the HHV-6 conference that was held at the end of June. My doctor was able to attend a special meeting about valcyte with Montoya and other top researches and doctors. She was not able to share the information with me because of confidentiality reasons. I do know that there was significant data showing cognitive improvement in the patients. I recently read an interesting article that found HHV-6 in CFIDS patients caused problems in the brain which could account for the "brain fog" associated with the illness.

I have been debating whether I should tell a recent experience that has been devastating, but I feel like I need to because countless people I've talked to with CFIDS/FIbro who have worse stories than mine have dealt with lack of support from friends and family.

My Best Friend has chosen not supported me through out this past year and now that I think about it there were even hints of her lack of support before my valcyte treatment as well. The last time I saw her she said some really hurtful, below the belt comments about my health problems . We have not talked since this incident. I thought that a person that has known me since I was a little girl and who I thought would know me well enough to know that I want nothing more than to heal and get on with the next chapter of my life would not be so vicious! This event has temporarily affected my confidence, especially in social settings. I am really sensitive about who I want to share my story with and I have had a harder time than usual with the ignorant comments I get such as: "I get tired all the time too" "I work out a lot and I hurt in the mornings too", "Have you tried exercising?", "You've been sick?, well you look great!". I know the only reason people make these comments is lack of education on the illness so it is my job to educate. Sometimes I just can't handle it and I want to be a hermit and not deal with it; even more so since this incident with my friend. So I am slowly picking myself up by the bootstraps after this big blow and I think of this quote a lot "A real friend is one who walks in when the rest of the world walks out".

The other day I was flipping through the channels and caught the end of a discussion between some cancer specialists. They said that cancer support and awareness has really grown over the last twenty years. There used to be a time when you didn't talk about it if you had cancer. No one really knew what to say and I'm guessing that if they did say something it was probably something really stupid. Sound familiar? There is also a high divorce rate in cancer patients because their spouse can't handle seeing their partner sick.

I am so blessed to have a supportive immediate and extended family. The friends I do have are supportive and wonderful. It's interesting how an experience like this weeds out all the fair weather friends. Things are looking on the bright side with my health and I hope to be able to report more good news next time I write.