The new you…

October 4, 2010 at 4:42 pm

Maybe because my symtoms began the month of March 2002 & within a month I had deteriorated to nothing, could not even sit up in a wheelchair without them putting a huge plastic tray in front of me, could not use the call button for the nurse, or the phone or remote control; not even able to scratch in itch I had. The nurses had to turrn me every two hours in bed by putting pillows behind my back. If my leg slid off of the bed, it stayed there!

My deterioration was quick & severe, I was total care. That is probably why at first I was dx with GBS, 8 weeks later it was changed to CIDP. No treatments made a difference: I had 14 Plaspheresis, 44 IVIG infusions, & weekly infusions of solumedrol, all this within the first 8 months. Still I was basically bedridden. When cytoxan finally arrested my CIDP in 2003, by the summer of 2004 I was able to finally walk again, albeit with a cane & AFOs. I got my driver’s license back in Feb 2005, much of the use of my hands back in the fall of 2004. It depends on where one is coming from, & I remember all too well what it was like to be total care for 4 months in the hospital in Mayo & then have my mother move in with us to take care of me at home for a year.

I was athlete of the year in my high school class, was a great hockey & tennis player, loved ice skating, downhill skiing, taking long walks with hubbie, etc. But none of that is going to happen anymore, lost it all at 48. I tried bargaining with God, but to no avail. So the choice I made was that as long as I am on this earth I have to live in this body. I joined a water aerobics class at our local YMCA, we still snowmobile, but much slower now, we still get up to our cabin on a small island & I either live in the water or we cruise in the boat or fish. We did all of these things before I got sick, but I try to do them more often now, as we are no longer working. Today I joiuned a new club, just for more social networking. I am also in a Bible study group & a book club, as these are things I can still do.

My husband was able to retire in 2007 & we have been able to take many mini-vactions & also long ones. Spent last March & April down in Naples, FL & just got back from a 15 day road trip out west, where we saw 6 national parks. I get very tired, need lots of rest & don’t always feel so good, but after 8 1/2 years none of that is new to me. I am enjoying being a grandmother to two small children & trying not to bring my family down about my CIDP. They all lived it, they probably remember it all as much as I do, but they are happy to still have a wife & mother around. I was the worst case of CIDP Mayo had ever seen & when they released me, they said what I had was basically like ALS & that I would die the same way. Does that explain at all why I have accepted my limitations?

BTW Every day I would just love to take a long brisk walk with my husband, but that will never happen. In my mind I never forget what I am missing, but I am oh so grateful to have done it for so many years. My son was born paralyzed from the waist down (spina bifida) & never got a chance to experience all that I was able to experience, just another perspective…