( RP ) Rp in 79 - now what's next???

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To All

I lost alot of my e-mails by mistake and I think W wrote what it was to get RP 10 years ago. In 79 not much was know abour RP and back then they had 1 out of 10 died before 10 years. After a few years of my major flare I had some relapses but nothing big at all. Then after 18 years of remission it came back again in the form of Transverse Myelitis, that was in 4-99. Since then I got shingles in 5-99, had another relapse of T M in 2- 00, being steriods and meds I have put unwanted wieght. This summer I had trouble with my vision being blurred, had my yearly Neuro appt. in Oct. and she said see you next Oct. agin, not much of a chance of me getting much better then I already am. I had blood tests done and she told me to see dr. about my blood sugar, that went as well as I thought, now I have dieabetes., type 2. With a change of diet and taking off a few lbs. my sugar has come down and I am happy about that plus I get to cheat and sugar was fine. Last Fri. I had xrays taken of my right hip and no cartilage there, I filed a missing report on it's where abouts but I bet that little RP muchin took it!!! LOL ( I guess) I'll see if Santa leaves me some for Xmas, ha, ha,ha. I saw my Rhuemy last week and she took an xray of my right knee that has been givening me trouble for awhile. I haven't gotten the results of that yet, she wanted to know if I might need surgery on it, I am betting on the surgery since my odds have been going down hill lately. I hope Monday will be a good day to ask for results, she will gone I bet and they will tell me to wait til she comes back, NOT, waiting is not in my volcabulary.

Well my PCP put me on Ultram for the pain I get at night from my hip which is getting to be an everynight sleeping buddy now, I would rather have bed BUGS !! LOL My PCP wants me to have a g. bypass to loose weight and that is why he sent me to Rheumy and also wanted me to come off some of my meds to see if I had pain and the pills were covering it up?? Pain can stay in the LOST and found cuz I ain't looking for it!! She says no coming off any meds and said no g. bypass either with my medical history. I told him I needed my knee more then loosing weight fast for my sugar. I see him after he and she talk about me and my what-ever?!! My PCP is great but he is not in the right field I need to really watch, he took a sed rate and mine was 30. You might thing that is not high BUT in a way it is enough to red flag it, that is what it was when I had my flares.

I guess I didn't run far enough or forget I had such a monster of __________(?? what ever I really would like to call RP) You name it and you can have itr for Xmas!!!!!!!!!!!!!!!! LOL One should always progress and not regress, is that not right? Life throws you a curve ball and it isn't fair , some one stole my catcher's mitt !!!!!!!!! LOL I think RP let me off easy in 79 but it said " I'll be back sooner or later" and I said later, SOOOOOOOO it has come to get me again, ha, ha. This time it has grown longer teeth cuz it isn't letting go this time.

I hope all of us one day will say good-bye forever but till then we have to learn to live with it. You take everyday as it comes and go from there. They say there is a light at the end of the tunnel but no one said how long the tunnel was did they??? For some of us it is really hard to go through the pain and wonder when it will stop or go away or atleast find a med to help the pain. Pain is not something we should have to live with. Keep your chins up (prop them up with a pencil if you have too but do not sharpen it first or you'll really get the point alot sooner, LOL)

I wish everyone a very Merry Christmas and those who have snow please send some to N, C, Sandhills, YEH!!!!!!

Love ya

Sally

PS: sorry this is long but hope it helps someone out. I hear I look good but I tell them inside I'm felling to pieces, soon I may find myself at the human trash compacker. LOL