Wednesday, January 13, 2010


I saw 178.

Oh my God.

And then I ran out of medicine while we were away, snowbound in a blizzard for days and days and days.

And my doctor couldn't refill my script in West Virginia.

So it ran out.

And the weight started to drop.

Now I am 'back' to 164.

And the sores in my mouth are gone.


The diarrhea has returned with a vengeance.

And my abdominal pain is returning, slowly, steadily....I fear a return of the intractable pain from April.

At what price, victory?


What do I do now?

I guess that's what doctors are for.


And Remicade awaits on Tuesday.


1 comment:

  1. That sucks. I have Cerbral Palsy, but one of my best friends has Crohn's. She was on remicade for a while. She has had her whole colon removed. She's 29 & on Humara (don't know if I spelled that right) now.

    I have been reading your blog for weeks now. You & Rachel have very simular humors. You should stop by sometime. Don't know if you would like to chat with her, but if so e-mail me (located on the right of my blog).

    Hope this finds you well & not in the middle of a flare... {:)