Getting Attention

[Guest guest]

Ruth, A nurse at one of the hospitals in this town has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Our local newspaper recently ran a whole page on her and her disease. How hard it was for her to work, Find a diagnosis, treatment, good doctors, etc. They talked about how rare the disease was and how expensive it is to treat and how pharmaceutical companies don't target much money for diseases such as this. But a lot of the article was about how hard life is for her. I was diagnosed with CIDP before NS. I had all the expensive treatments that went along with it. I had IVIG that cost $28,000 per month and required missing a week of work out of each month. So I had to use my vacation and all my sick time. I had Plasmapheresis in the evenings. I had a Quintin Catheter placed. (A large IV put in a large vein close to the heart) I had this done for five hours every other evening. I worked all day, had the treatment, was sick all

night and exhausted all day the next day. Then I got Sepsis (a blood infection ) and they had to remove the catheter. All this was after Immuran, Cytoxin, I can't even remember all the other drugs. Thank goodness. the drugs for CIDP and NS are a lot alike. Anyway at that point they biopsied some nerves and found the NS. Now I worked at another one of the hopitals in town and when I left they only knew that I left because of illness. So, I think sometimes we don't think of helping ourselves. We just go off and take care of ourselves without mustering all the resouces available. It took me along long time to even join a group such as this. Eileen

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[Guest guest]

Eileen, I too h ave read many articles in our local paper about ppl that are dealing with diseases, and they actually sound off better than us! I was told to call the paper to do an article on myself. I have just brushed it off, but then again, it may hael a lot of us out there. I have also recently received a service dog, to help me when I have dizzy spells, and to help retreive the phone and to help steady me to stand up. Everyone has accepted my dog, but I am sure an article would help. I would just feel bad, b/c I know that there are ppl out there that are worse off than me. Keep the Faith. LynneEileen Mac wrote: Ruth, A nurse

at one of the hospitals in this town has CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Our local newspaper recently ran a whole page on her and her disease. How hard it was for her to work, Find a diagnosis, treatment, good doctors, etc. They talked about how rare the disease was and how expensive it is to treat and how pharmaceutical companies don't target much money for diseases such as this. But a lot of the article was about how hard life is for her. I was diagnosed with CIDP before NS. I had all the expensive treatments that went along with it. I had IVIG that cost $28,000 per month and required missing a week of work out of each month. So I had to use my vacation and all my sick time. I had Plasmapheresis in the evenings. I had a Quintin Catheter placed. (A large IV put in a large vein close to the heart) I had this done for five hours every other evening. I worked all day, had the treatment, was sick all night and exhausted all day

the next day. Then I got Sepsis (a blood infection ) and they had to remove the catheter. All this was after Immuran, Cytoxin, I can't even remember all the other drugs. Thank goodness. the drugs for CIDP and NS are a lot alike. Anyway at that point they biopsied some nerves and found the NS. Now I worked at another one of the hopitals in town and when I left they only knew that I left because of illness. So, I think sometimes we don't think of helping ourselves. We just go off and take care of ourselves without mustering all the resouces available. It took me along long time to even join a group such as this. Eileen Be a chatter box. Enjoy free PC-to-PC calls with Yahoo! Messenger with Voice.

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Love Lynne

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