Date:   8/24/2008 1:11:51 PM ( 17 y ago)
Hits:   690
URL:   https://www.curezone.org/forums/fm.asp?i=1244004

Last night I just crashed. My emotions were so far down in the pits it wasn't funny. It gets pretty despairing sometimes, and I just have to cry. Then I get up, get back in the saddle, and go at it again. So here I am.

I got an invitation in the mail yesterday which hit me pretty hard. It was for the 1st Annual Friends Day at the FSHD research center at the University of Rochester in New York. Oh, yay! Are there going to be balloons and free pony rides for the kiddies? No. It's a luncheon, with lectures by the doctors at the tippy top of the field describing where we are at as far as FSH research goes. One lecture will be a clinical update on the disease. Another will be a look at the molecular structure of the disease. A third will be about what to expect from physical therapy. Finally, there will be a guest lecturer from the sister lab at Leiden University in the Netherlands. These guys are amazing folks. They have dedicated their entire careers to finding a cure for this thing. But they are still scratching their heads and they have invited the FSH community to watch them do it.

It made me cry.

It made me cry- a lot- not only because these really really really smart guys don't know what to do and only keep telling us "we're getting closer," but because I'm sitting here in Texas thinking I can get strong and well with herbs and all kinds of other fun stuff. All I have is a few words from a dead guy who knew about plants and the human body, and a really big God Whom I know loves me. I've got a couple of friends who believe in me. Everybody else is saying I'm wasting my time and money.

My thought is simply this: what if I can get stronger despite my genes being the way they are? I may not be able to add extra gene repeats to the q4d4 quadrant of whatever number chromosome it is that makes muscles strong. But who really cares, if what I want to do is just be able to pull a casserole out of the oven by myself or get up a flight of stairs like Rocky did? lol (yes, now you've got that song stuck in your head lololol sorry) Can't I just bypass the gene issue and get stronger anyway?

OK, Unyquity and I are making our final touches on what I'm getting to do the IP, and the order should go out tomorrow. This part has been a blast, because she and I are zany gals and OMG you won't believe what we've got cookin' on the stove!

AND... they're back!!!!!!! Sic 'em Bears!! You're gonna wish you lived in Waco :-D








 

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