Thursday, June 28, 2012

afternoon naps/Cortef/nagalase

things conducive to sleeping in the afternoon:

slow blues music
slow hot weather
sleeping cats
chronic fatigue syndrome

it was just by crazy random happenstance they all call came together today.

I want to get back to blogging more. I was posting less because I was getting worse and I didn't have the energy to spare. Then I started feeling a little better and I didn't want to be reminded that I had a blog specifically for my bad health. 

I think my feeling better was a combination of the MAF 314 (GcMAF yogurt) and starting Cortef. Dr. Cheney prescribed it to me at my visit at the end of February. He said he usually doesn't prescribe it because it usually doesn't work...but it's helping me. Dosage varies but it's been between 15-30 mg a day. 

So I am better, but not enough to bump my KPS up or anything. I still couldn't live on my own. I still can't go shop for food and cook myself a meal. But, while anytime last year I would have called myself housebound, it doesn't seem right anymore. I've been leaving the house at least once a week, sometimes two or three times. Sometimes I drive myself. But if I try and drive out of my neighborhood, I crash from the stress of driving, especially if the traffic is bad. 

People have been asking about my nagalase, if it went down on GcMAF. It has. It started out at 2.2 and even though I didn't feel any different on the sublingual GcMAF, nagalase went down to 1.3. Then I started the MAF 314 and on January 25 it was at .98. .32-.95 is normal. So Dr. Cheney took me off the MAF 314 because he said people experienced crashes when their nagalse got too low. 

I took a nagalase test after I went off the MAF to see where it was and if it would go back up, but the test I took was the wrong one. So they sent me a new test but I won't be able to get the blood drawn for another few weeks, so it will probably be two months before I know the results. 

I think I have made a pretty good life for myself, confined to the apartment. A pretty good housebound life. Housebound, even though I get to leave sometimes now. To hang out at friends houses, eat at restaurants, even saw War Horse (the play). Almost didn't make it to War Horse though, I was so tired. 

All day in my head I've been saying to myself "I'm so tired" Well it's more like "Oh, Alison, I'm soo tired" I'd say it to someone else but there is no one here to say it to. And I'm not gonna text my mom or my friend just to tell them I'm tired. I wanted to say it on Twitter or Facebook, but instead I just said I was so excited for the premiere of Louie tonight on TV. 

I signed up for an online class in music theory. This was the first week and I got all my assignments done. It was the first week so they were pretty easy. Eleven weeks to go. I've always wanted to take music theory. I've also always wanted to go back to school, brick and mortar school. College. But these past few years I've felt I couldn't even take an online class. But with the improvements from the MAF (which I think are wearing off actually now that I'm not taking it anymore) and the Cortef, I thought I could handle it. So far so good.

I am really excited for this slight improvement. But it took me a few weeks to realize how slight it was. But it's something.