Reply To: An update from emitch74…

March 13, 2012 at 8:26 pm


And thank you for the kind words. You’re right. I have never met anyone who had actually heard of CIDP. Hell, aside from the doctors, 95% of the hospital staff on the neurological floor had never heard of it.

Truthfully, no, I have never thought of going to the media with my story. After I regained most of my strength, I was asked by the staff at the hospital/rehab unit for an interview and had my picture taken for their newsletter because they voted my recovery as their biggest success story of 2010. That was about a year and a half ago and before I lost a single pound.

It’s funny because those people all HATED me when my condition was deteriorating and my neurologist refused to run any tests to see why my health was plummeting (I was originally diagnosed with GBS). I’m not going to lie, I was a real pain in the ass and cursing out the staff was a daily occurrence.

They got the impression that I didn’t want to work hard and that wasn’t the problem. I was losing strength and having increased numbness and my attitude reflected my deterioration. So I was not an easy person to be around at all. Like I said in the original post, they all thought I was Satan’s spawn.

How do they react to me now? They LOVE me. When I go to the hospital for my twice a year blood draw, I usually stop on the rehab unit to say hello and they treat me like I’m George Clooney on the red carpet. Lots of ooooohs and ahhhhhhs – everything except the flash bulbs popping in every direction.

I try to stay humble knowing this crap can come back and bite me at any time. I know what kind of obstacles I’ve had to overcome so I guess I don’t really feel the need to broadcast it.