Days tend to blend together making it seem like one big long day. Sometimes I feel like Bill Murray in the movie Groundhog Day.
It looks like the herb (as in chinese herbs) experiment didn't work. Although I herxed, I still haven't felt well at all. Not that I ever feel well anyway but my functioning has decreased since starting the herbs. I had high hopes for acupuncture yesterday but other than feeling good for an hour after my appt it has not helped. I had also hoped that we would talk more about treatment and get his thoughts on valcyte. He has many strengths but sometimes he can be quite forgetful (hmm. Maybe he has cfids!) and treatment can sometimes lack a certain continuity. This was one of those times where I was counting on something he had promised the time before but he had no idea what I was talking about. He also didn't have a good explanation for why I'm feeling worse than before the herbs which is upsetting. I need all the functioning I can eek out of my body.
The good news is I've been approved to receive Valcyte through Roche's Patient Assistance Program. It's scary with scary potential side effects but I'm so grateful that programs like this exist. It wasn't all that hard to apply for.
Then I went through a downward turn because I thought I wouldn't be able to take the valcyte. I can't swallow pills and I thought I'd be able to get by like I usually do with just crushing the pill and putting it in liquid. With valcyte that isn't possible. In fact there is a warning in the information that states do not touch a broken tablet.
I emailed the executive director of the HHV-6 Foundation (which is a great site for information regarding HHV-6 which is one of the viruses that I have-the address is http://www.hhv-6foundation.org/). I emailed the executive director and told her my predicament. She replied quickly and sent an attachment which included directions for a compounding pharmacy to use. This moved me to tears. In her email she spoke of her daughter who has nearly recovered from cfs (hhv-6) with valcyte treatment. Most importantly of all she told me not to lose hope. My despair must have communicated itself through the email. So I cried and cried. Someone got it. I wish her a happy mother's day. She also had some suggestions on tests to get for my swallowing problem. I'm just very impressed with her generosity.
The past few days haven't been easy. I've felt a little hopeless-like I'll never get better (this is when I channel Eeyore from Winnie the Pooh). It's not that I sit around and feel sorry for myself. I have good moments and there's a lot I like about life. But having an illness with no cure that literally sucks the life out of me just isn't easy.
I'm going to try and juice everyday. The woman who wrote Crazy, Sexy, Cancer talks about eating green in her book. Apparently it can provide oxygen to my oxygen deprived cells. I juiced today while listening to a cd I bought on cfids.
Sunday is Mother's Day. My family will be coming over to a local park for a picnic. It means a lot to me that they would do that. Mother's Day is always a painful day having lost mine to cancer in 1995. Another one of those tragically unexpected turn your life upside down events. She died 44 days after being diagnosed with cancer. I learned a lot from her and miss her terribly right now. There are just sometimes when you really need your mom. When as bad as things are, only a mom can make better. I wish I could talk to her and ask her what she thinks about all this. I remember back in the early 80's when the Epstein Barr virus was coming out and she turned to me and told me she was worried about me getting it because I pushed myself too hard. I'd love to play one more game of cards with her or go shopping again.
May 12th is National CFS/FM Awareness Day. There's a lot that needs to be done in the way of awareness, research, and eliminating stigma. This is a devastating disease with many, many people suffering.