An update from emitch74…

Thanks all for the kind words and encouragement.

GH,

My “maintenance drug” is Cellcept (500mg in AM and 1000mg in PM). I am receiving no other treatments at this time and haven’t since June of 2010.

BNY,

My CIDP affected my entire body from the neck down. I could barely move my legs at all and my arms were so weak that I couldn’t pick up a can of pop next to my dinner tray.

Lori,

I am truly humbled to hear that my story helped keep you positive while dealing with your own condition and the struggles that come with it. In my own experience, staying positive didn’t work for me until I started getting positive results. The staff at both the nursing home and the hospital both swore that I was satan’s spawn because I was a real pain in the ass when my condition was plummeting by the day. I admire people who found ways to stay positive despite not getting the results they wanted because I was unable to do it myself.

To answer your question regarding my PE treatments, I started to feel a significant difference in my strength after the 2nd treatment. From that point on, I haven’t had a single setback in 2 years.

I was always told by PTs and my neuro that I shouldn’t push myself too hard with this condition but I never listened to them. My transformation wouldn’t have been nearly this dramatic if I had simply heeded their advice.

Thank you guys again for the kind words.

shellbones,

Initially, I did experience a lot of fatigue during inpatient rehab [as well as outpatient rehab after I was sent home]. Taking naps between rehab sessions became part of my daily routine just like everything else.

Obviously, tipping the scales at 400+ lbs clearly demonstrated that I was in terrible shape to begin with so I cannot say for certain if it was the CIDP that was at least partially to blame for such fatigue or was it simply because I was too fat and out of shape. Let’s call a spade a spade.

The only residuals I experience now is minor tingling in my legs that tends to come and go. It’s more of an annoyance than any real hindrance though and for the lost part I’ve learned to just ignore it. I just approached my rehab (and now my workouts) with no regard for my condition whatsoever. The thought of slowing it down a bit because I have CIDP is not something that even enters my mind.

If you’ve been reading the stories of others who also suffer from this condition, you know by now the cliché that everybody’s body responds differently with CIDP [and GBS for that matter]. I would never suggest that others should take the very same approach with their rehab/workouts because I would feel terrible if someone heeded my advice and pushed himself/herself too hard, resulting in a setback. What worked for me may not necessarily work for you and vice versa.

My goal once I regained enough strength back to live a normal life was to lose as much weight and get into the best shape I possibly can so that my body would be able to handle another relapse far better than it did the last time. I certainly never expected to drop half my body weight and have the ability to squat 450+ lbs. But the faster those numbers dropped on my scale the harder I pushed myself.

Last summer, I used every kind of cardio machine imaginable (treadmill, stair climber, bike, arc trainer, elliptical, Precor AMT, running outside, etc. etc.) and my legs began forming into tree trunks and became Incredible Hulk strong. I did do quite a bit of lifting as well but getting down to my ultimate goal weight was my first priority and lifting was more or less put on the back burner. I was doing 2-3 hrs of cardio a day and those around me thought I was insane. They were probably right. But I was determined to achieve my goal and never took time off to rest. I went on vacation to Missouri to visit a friend of mine last June and still worked out 5 days that week.

I’ve essentially taken my game to another level since lifting is now my #1 priority and seeing definition all over from head to toe has quickly turned lifting into a passion of mine.

I don’t know why I don’t experience the residuals on a day to day basis that most other members of this forum do but I like to think that my approach and determination to work my ass off as hard as I can and continuing to eat healthy has a lot to do with it.

Hope my long winded response helps.

Goodney,

I find it quite humbling to hear others claim to be inspired by my story so I appreciate that.

I didn’t do any of this to inspire anyone. I did it because I was sick and tired of being confined to a bed for 7 months and unable to wipe my own ass. I’ll be damned if that’s going to happen to me again.

My neurologist is also an extremely arrogant SOB and his attitude towards me when my health was deteriorating really helped fuel the fire in my belly to prove him wrong.

Quite frankly, I don’t often post updates about me because I see what others have to go though on a day to day basis just to live a normal life. I just don’t want to give others any kind of false hope or give people the impression that I’m beating my chest and bragging because I know this thing can hit me again at any time.

Take care and hope all is well on your end.

Kelly,

I can’t even imagine having this condition at the age of 4. It was hard enough at the age of 35. Good for her. She’s a fighter.

I wish you both all the best.

shellbones,

You weren’t “lucky” for being in good shape when CIDP hit you. Don’t short change yourself. You earned your “luck” by doing a helluva lot of hard work and being dedicated to living an active and healthy lifestyle and I give you all the credit in the world for that.

I kick myself now that I didn’t take my health a lot more seriously before my diagnosis, and unfortunately, it took a devastating condition for me to change my lifestyle.

Two years ago, I couldn’t imagine going to the gym 5 days a week. I would have preferred to do just about anything else but get off my ass and work up a sweat. Now, I can’t imagine NOT going to the gym 5 days a week. I’d be a fool to stop doing what has put me in this position.

Lori,

No, I did not experience increased numbness after a lot of exercise during my recovery. I guess that makes me lucky though I didn’t exactly win the lottery being diagnosed with CIDP in the first place.

shellbones,

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.