Re: [SPAM]Re: suggestions and rant

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Tracie

Great post. I hope it works for you Moish.

Jackie

suggestions and rantHi to all, I really don't know how to start this letter because there is a lot that has brwed up in me for a while. Reading all the e mails that everyone sends, it seems that majority if the people who are sick with ns or sarcoid are women. You write all about the husbands that are having a problem trying to cope with the sickness and how it's hard for them to understand, but we men have the same problem with our wives I think. How do you explain something to someone who has never been sick?! After my episode with ns, I told my wife, if she were sick with a disease that is unknown[?] I would look up everything and try to undersatnd or find out about it. That goes especially with the side effects of the steroiods I was taking, the short temper, anger and everything else bone pains. It's hard to describe or explain, all she could say is you can containb it. Or even the effects I have tyoday from the ns. Tha brings me to something scary that happened yesterday, but has happened before but not to the same extent. I need to know if any of you has experienced this. I was sitting down in the afternoon, and I was tired. I had taken a short walk and it was very hot. When I came inside, i sat down, closed my eyes and When I opened them, it felt that my left eye was focused on something and the right eye had to turn to get focused on the same object, like turning 180 degrees. I closed them immediatly , opened them again and the same thing occured, as if my right eye was turning to see what the left one was seeing. It scared me a lot, and gave me a terrific head and eyeache that lasted the whole night, and I am stll feeling today, [it's 10 a.m.]. I'm sure it's a neuro thing, but the dr will only say' g"et used to it. I can't tell my wfe because it's difficult to say somethinbg hurts me, mnost of the timne I keep it inside me. There was one dr that I ws able to talk to, but he left. Anyther good thing did happen, I finally started to receive my ssi check. Although I don't live in the states, and it's not a lot of money in $'s. it took me almost 3 years of fighting with them' they turned me down all the time until I hired a lawyer. The first lawyer said I had no case, the second one agreed and now i have 60% disability. The only thing is not all of it is due to ns, but at least they recognised it as a disease and understood that I suffer from it. Sorry about all the rambling, i had to get this off of my chest. VP

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