The Waiting Game

I was finally able to get my labs done yesterday.  I cut my morning rest short, and I arrived at the lab at 11:40 am.  They close at 12 pm for lunch.  My timing couldn't have been better.  Twenty minutes layer, I was staring at a tray full of vials filled with my blood.  An awful lot of them.

I called my husband, feeling triumphant that I had completed that task.  When I greeted him, he said, "What's wrong?  You sound terrible."  Yep, he's that good.  I guess I didn't sound as triumphant as I felt.  He could tell the ordeal had wiped me out, just by hearing me say, "Hi, babe."

So now I wait.  I wait for my doctor to get back test results that will tell her nothing... and then the test results that will tell me everything.  Am I XMRV positive? Or will I test positive for one of the other viruses they've discovered?  We'll see.  Once I know, I can decide on a course of treatment.  See if I should wait for more science or go for HAART treatment. 

Have I ever mentioned how impatient I am?  Let the torture begin.

Clueless

I have been doing oxygen therapy for over three weeks now. Is it helping? I don't have a clue. I have had flu-like symptoms for almost two weeks -- persistent sore throat, sneezing, sinus pain, nausea. I know that's normal for most people with CFS, but it isn't typical for me. Sometimes I get a sore throat from overdoing it, but it's usually mild and only lasts a short while. Is this that hopeful worsening of conditions that indicates I'm actually getting better? "Die off," or something like that? Or did my kids pass on the actual flu to me, and I just can't get rid of it?

I think clueless pretty much sums me up. I surf the internet incessantly, trying to know what is going on with me. I'm desperate for improvement. I'll try anything. And I do try everything. I take the right supplements. I follow the CFS rules. I convince myself I have a modicum of control. I believe if I just ... then I'll get better. Maybe not all the way better, like I once thought, but at least a little better, right? Right? No. I keep slipping, slipping, slipping, down this nasty slippery slope.

Cake Wrecks and Charitable Donations

The wonderful people at Cake Wrecks are giving away $200 a day for the next two weeks to charity. Plus, they are asking their readers to donate just $1 to the charity of the day as well. They are asking people to leave comments to suggest where they should give their donations. I've left a comment asking them to donate to the Whittemore Peterson Institute. I thought others might want to leave a comment, too. This is a wonderful opportunity to help people become aware of the great strides being made in CFS research and to hurry along the research that could ultimately lead to a cure.

http://cakewrecks.blogspot.com/2009/12/catchin-spirit.html

National Fatigue Survey Launched

I think this may apply only to those in the US. :( Results will be published March 2010. Please let your voice be heard!

National Fatigue Survey Launched

by The Fatigue Management Institute

The National Chronic Fatigue Survey, an internet-based survey of fatigue related to chronic illness, has been launched by the Fatigue Management Institute of Florida Institute of Technology. The survey is designed to gather information on the nature and impact of fatigue associated with chronic medical disorders. The survey findings will be used to better describe the experience and severity of fatigue related to chronic medical conditions and will contribute to the development of improved techniques for managing fatigue.

The Survey is open to adults with a chronic medical condition, can be completed anonymously, and can be accessed at:

http://research.fit.edu/fmi