Reply To: Update one year after diagnosis with CIDP

April 2, 2012 at 3:06 am

PattysOO: I am PattyO also (and I guess we have a little more in common than our names,huh?) I think I have just now re-read your post a dozen times. IS IT REALLY TRUE – WAS YOUR HUSBAND UP ON TWO LEGS? SKIING? yes with adaptive poles but SKIING??? I have tumbled down an Alice In Wonderland-CIDP hole, going from a competitive half marathoner (and sometime marathoner) and fitness nut — survival camp for moms of teenaged, adorable, loving and highly energetic boys lol — to someone who takes three steps, has to stop and fingernail the palms of my hands so as not to cry from the pain in my feet. I have bruises up and down my thighs from the same… the agony of the nerve pain is unbearable. I had gotten the pain somewhat under control with ivig via iv, but unfortunately developed a series of allergies/negative side effects that take ivig via iv out of the picture, I don’t qualify for the new sub q trial. And so my motorized scooter is plugged in; now considering adaptive equipment for the keyboard/fingers are having trouble and for the bladder – ugg! depends, really? A man must have designed them (honestly – have you seen them??)- and the swallowing – I have been instructed by my dr never to eat alone again. Gone are the days of dinner parties filled with laugher, good food and great friends. Now it’s onto soft foods, taken in small quantities all the while being watched like a hawk from my increasingly nervous family.

To read the story of your husband has given me the determination to try to type this message – which once upon a time would have taken a mere minute or so; this has been a labor of hope and perserverance that has taken more than a half hour of typos, corrections, and one finger clicking.
I will keep the mental image of your husband – on the slopes – letting the wind hit his face — and not the tears of frustration – with a smile to last a lifetime. That image will get me out of bed tomorrow morning …. you never know….it just might be my day to smile!

**Thanks for the happy story and please, go tell it on the mountain of this CIDP world – we need this good news!!