We all get a ‘rude awakening’ with this stuff? VERY RUDE!

Anonymous
June 7, 2010 at 7:40 pm

Let me tell you? AT ANY AGE? GETTING CIDP IS TOO SOON! And, treatments are few and hard to got [besides steriods, which, when your’e over 40 raise red flags?] My onset was rather FAST by some definitions or ‘semi-acute’ by others. And, it was mis-diagnosed from the get go…Getting second opinions and more did save me from the ultimate nightmares, I believe. Doesn’t mean it can’t happen in the future again tho – sort of like mutant tidal waves? Hate those mutant waves!
As for attitude? Well, you can sit and moan about the pain…or work very hard with your docs to find the best pain meds that work for you! IF ANY. Granted, I will take occasionally [once a week or twice maybe?] a percoset type med. for pre-emptive pains -when I’m going to over-exert myself and I know I’ll have pay-backs? For the trying? Only one medication has eliminated my pain and that was an anathestic for an invasive surgery….the next 24 hours were heaven as I was pain free from the nerve stuff, but I did have a hole in me from an ‘exploratory’ test? [Negative, thank goodness!] And had to be careful anyhow… I JUST ENJOYED EVERY MINUTE of IT!!!!!! That particular med is NOT one that a body should get on a regular basis! It’s serious stuff. What we have to do is to help our bodies heal from our own assaults to our own immune systems as best we can!
As for explaining to the world what ‘your problem is’? I liken it to MS. Both are demeyelinating but both affect opposite ends of the nervous systems. The effect and affect on the nerves chemically [and I’m no chemist?-but I can read!] are similar, just in different parts of the body! I just say I’ve got a ‘cousin of MS’ leave it at that, and folks can sort of relate that it’s NOT GOOD. Leave it at that? And go forth!
PT does help IF your insurance can give you enough sessions, AND enough time to do it all in! Each of us is a ‘ROME’! We can’t rebuild overnight!
Hey! What good thing has happened in your life today? I met up with a very old friend and had a good lunch! We had fun! Getting out is essential to our well being, even if folks don’t ‘understand’! Contact is necessary and HUMAN exchange is a big fuzzy in our lives that we don’t get being home-bunnies or cave-dwellers! Keep faith and keep at it! You WILL find your right way! Hugs.