There's lots to catch up on. I feel the usual slight frustration knowing that my cognitive faculties aren't all there. When I was in school or writing my dissertation I'd get a great feeling when I felt like I expressed exactly what I wanted to say. The word finding problems as well as problems with short term memory make it more difficult to write. Writing also makes me more self-conscious of my cognitive difficulties. There are many, many people with ME/CFS who have written books, articles, poetry, music, etc..Not to mention Laura Hillenbrand who wrote Sea Bisquit (and has another book she is finishing!) while ill. When I read others' blogs etc...I feel hopeful that I might experience a return of some cognitive functioning. I already have. But I want more.
I'm a little burned out about some things. One of them is ME/CFS message boards. A little while ago I put up a post on my blog regarding testing. I got the information from someone who somehow manages to find out these things and had permission to repost. I thought it would be helpful for people who wanted to get tested. I was surprised when I found my post quoted word for word on a message board. Then I saw it on more message boards and then Prohealth had something on their website and mentioned this blog. That's what got me upset. Prohealth did not contact me asking ofr permission to repost. I was a bit surprised that they would copy someone's blog and not ask for permsission to repost. Then the piece that Prohealth did got reposted on various lists which greatly increased traffic to my blog. I should be happy about it but instead I feel intimidated, a bit embarrassed and caught unawares. I feel like I do when I dart outside in my pj's to get the paper thinking and hoping no one would see me but just as I'm outside my door a large busload of people drive by and there I am-outside in my pj's. And it's 3:00 in the afternoon.
So I stopped posting about anything personal because I felt like people don't want to hear about the emotional aspect of living with this horrid disease but would rather hear about the latest updates on XMRV. I had to remind myself why I started this blog in the first place.
I started this blog about six months after I was diagnosed in order to talk about what is was like to have this, to track my progress, symptoms, and responses to various treatments. If I had to tell someone what this blog was about I would say its about the emotional aspects of adjusting to living with a devastating and crippling chronic illness that took my ability to live my life (the way I want to) away. It took away my hopes, my dreams, and my beloved career. This blog is a place for me to express what it's like to live like this.
I feel like I had reached a place of peaceful acceptance right around my birthday. I'd fallen into sort of a rhythm again. It was nice not to be so consumed by grief, shock, and despair. I was feeling good about the improvements gained from various treatments.
Then the news about XMRV came out and I was swept away. I crashed and burned from all the reading, research, phone calls, etc.. that I did. About a week after the announcement I found myself feeling strangely agitated and angry but couldn't figure out why. I knew I was crashing and last week had a low grade fever off and on but that didn't explain the agitation/anger. I finally realized that I was having an intense experience of "we are so close but so far."
I do feel that this is a big player in our disease, probably the driver but that doesn't mean I'm going to get well now. The news opens doors, ones that desperately need to be opened. That so close but so far feeling has reawakened the grief in me and a deep longing to return to my career. I cried for a long time last night about it.
I started Artemisinin on Tuesday. My ME/CFS doctor said it had antiviral properties but I'm having a hard time finding anything about it having antiviral properties on the internet. It's helpful for malaria, babesia, and parasites but viruses??? I am concerned about liver toxicity as it can cause hepatitis.
Tonight I'll start Low Dose Naltrexone. Hopefully that will help. I have no idea what to expect from it but I'm encouraged by what I've been reading.
Today I've been feeling very much like I'm in a bad viral flare again with chills, etc...
My SSDI attorney heard about XMRV and wants me to get tested for it. I heard from the Court in early September. They wanted additonal records to see if they could make a determination without me having to go to Court. This is routine. My attorney said I'll have to go to court because there isn't enough evidence for them to make a ruling on the record. Unfortunately, everything is delayed because my ME/CFS doctor is too busy to fill out the SSDI forms (its been one month now). My attorney is frustrated at the lack of response and has sent two requests to no avail. I told my attorney about my second doctor dying. He was in a pretty bad mood the day I spoke with him. He said "you had ANOTHER doctor die?" in a tone that was somewhat blaming.
My car isn't working-the battery keeps dying. I just find that so symbolic. I've been having problems with the car battery dying ever since I got ill. What's a real drag about not having a car is I can't go to any doctor's appts right now nor can I follow through on the sleep study a doctor ordered etc...I'm feeling even more housebound and isolated as a result. Not that I can drive far but I can only walk a block so driving is kind of critical. Taking the bus isn't an option until the orthostatic intolerance has eased up a bit more. I might need to increase my Pindolol because I'm getting heart palps again.
My dad has a reoccurrence of prostate cancer and chronic lymphocytic leukemia. I told him about XMRV. He was going to bring the information to his oncologist. Luckily he is responding to treatments. Given my family history I would be very surprised if I don't end up being positive for XMRV. And that isn't good news.