Monday, August 23, 2010
The discovery of XMRV changed things for me. So, last week, I purchased health insurance for myself. As soon as I get my ID card, I'm going to meet with my doctor again. I will first ask for Klonopin and LDN, two drugs that have been known to be somewhat helpful for CFS. Then, I plan on getting tested for XMRV. If I come back X+, I will be requesting to be treated with the HIV drugs that work against XMRV.
I don't mind being a guinea pig. I don't want to wait for clinical trials. My life has been scraping the bottom for about a year now. This summer, I barely left the house. I can no longer go shopping, and driving any distance is difficult. I can't imagine that side effects from the anti-retrovirals could possibly be worse than what I am already living. I strongly suspect that it will help me, and I don't like the idea of waiting, allowing the retrovirus to continue to reproduce and gain a further stronghold in my body.
Of course, I'll let you all know what happens as it happens! In the meantime: Has anyone tried Klonopin and/or LDN for CFS? What have been your experiences?
Friday, August 13, 2010
*audience yells* ... How bad is it?
My CFS is so bad, it got kicked off Oxygen's "Bad Girls Club."
It's so bad, it was featured last night on Fox's "Cops."
It's so bad, rebellious teenage girls want to go out with it.
My CFS is so bad, it's not funny.
Yesterday, my dear friend Josie took my boys to Cub Scout Camp for me. I got a phone call at 9:00 am. Apparently, you had to wear tennis shoes, and my ten year old was wearing sandals. She said she'd come by, pick up his tennis shoes, and drive them back out to him for me. See? She's a sweetheart.
But then, I had to scour the house looking for the stupid tennis shoes. Upstairs, downstairs, a good three times, braving the contents of his closet, looking under blankets, looking under the kitchen table, checking the shoe basket, where they should be. I finally found an old pair that probably didn't fit anymore, and that was the best I could do. All this took less than fifteen minutes.
And it did me in. Stick a fork in me, I was done. Long morning rest, long afternoon rest, early bed time, and I was still wiped out. All from a little shoe searching.
I've noticed this relapse isn't relenting. I think I may need to face the fact that this is my new normal. It is what it is, and it's time I accept it.
Thursday, August 5, 2010
How am I doing with my Daunting Things? Hm, let's take a look...
1. Super-Walmart: Sent my son.
2. School registration: Sent my son.
3. Back to school shopping: Ordered online for my younger boys; let my son take my girls shopping.
4. Visit from my sister: Suck it up. It was only three hours (ha! only!), and I rested up tons the next day.
5. Carpooling: Still have three weeks before school starts.
6. Sleep over: They ended up at their friend's house instead.
7. Tidying up: Had my kids do it.
8. Taco salad: Had my kids do it, with managing instructions from me.
Have I mentioned how much I love and appreciate my kids? My son has been such a sweetheart, running all over for me now that he can drive. And they loved learning how to make taco salad. It helped that I called it "Chef School." I love that my kids "get it" and do what they can to help our family adjust to my disease.