With Hope! You are very wise! And I hope you did cuddle.

January 1, 2010 at 9:05 pm

Honestly, I had a neuropathy set back…big time this summer that drastically altered my life for the last 7 months. I’m now daily regaining strength thru PT and exercises to be done at home and While I’m not blasting forward progress-wise at the speed of light? I’m not ‘regressing’ too much either.
I see the ortho next week, and will plead for more PT! My balance is beyond shot! So go and give your special other a giant HUG from me…and you too!
About feeling sorry for self? Well, you gotta sit yourself down and really look at the ‘options’! Wheelchair? Not thru some parts of my house…and I guess many others’. Scooter? Even worse-HOW do you get the thing down the step to the house [fire/safety code stuffs] and then into a vehicle to get and go somewhere? My! It’s way to complicated! I don’t know about any other of you? But I know I DO NOT want to go out quietly! Especially about Having people come up to me ‘speaking louder’ as if I can’t hear well either!
YE! I ask myself at down times: WHY ME? But then Why Not? And What makes ME so special? If I’m slower getting around, so be it. If I’m not as easy to stay up and have ‘fun’ with?[Tend to doze off mid-sentence?] Take me as I AM! I am NOT going to pretend things are fine, I’ll find ways to do things ‘other ways’. Such as shopping on-line, or doing grocery shopping the same way? I Will challenge doctors about some decisions and biases – armed only with facts and I will seek the best I can get out of all the medical resources available to me! Do NOT ever pity yourself! You got a bad throw of the ‘dice’ so to speak. We all have here. Tho, yes, you can feel down now and then? But PLEASE PUT UP A GOOD FIGHT! Thru this effort? You gain doc’s respect and then THEY in turn can start working really on your behalf. Thing is to put yourself in an informed position to make them WANT to work for you!
So yeah, you can feel overwhelmed, at times? But now? Get MAD And declare WAR on this CIDP!
My heart is with you thru this journey. I’d done it alone, not being web-wise at the time. But, I’d found out later that others have ‘done’ this route and are somewhat in sync with my feelings. Keep faith always, especially in yourself!