Re:It should be easier for me to give mice brain tumors.
by pumpmylemma on Sunday April 03, 2011 @09:34PM
(#2404871)
What you described is becoming much more common. I still have concerns, but I'm excited by the promise of websites like http://patientslikeme.com
(Disclaimer: I'm actually starting an HN-like website for rare disease people in a week or two; I had (or have) a rare type of cancer called Chordoma.)
FWIW:
Spent most of my life too sick to hold down a job and hid behind the label "homemaker and full time mom".
Spent about 3.5 months bedridden.
Diagnosed in May 2001 with "atypical cystic fibrosis".
Summer 2002: While attending GIS school in the smoggy LA area, got on boatloads of medication that doctors would not give me when I was bedridden and had no diagnosis. This helped save my life but left me a mess.
Spent the next several years getting off the drugs.
Antibiotic-free for something over 7 years (iirc).
Medication free since sometime in summer/fall of 2009.
Generally treated like a nutcase by the CF community which can't admit their real problem with me is they firmly believe the mantra "people like you don't get well" while simultaneously raising tens of thousands of dollars for the CF foundation and chanting "let CF stand for 'cure found'".