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Belinda's Story

blinda75@swbell.net

Hi my name is Belinda. I have RA, OA, Sjogren's, Diabetes(from pred use) hypertension(from Arava). I am almost 43 & have had RA since childhood, unexplained fevers & muscle & knee pains etc. I was not dx until 1 week after my 18th birthday. My first RD told me that I had Lupus & I could have a fairly normal life but I would mostly likely die around 30. Up until that time I had been a very good little southern girl. Well I did all the things that I wanted to water ski, motorcycle riding etc. I really wasn't that wild but before then I would not have said boo to a goose. I started college when 17 & it took 5 years because of working part-time & the RA. I got a new RD when I was 19. I have had the same one since then. I had always wanted to be a pharmacist. I started & again took an extra year. I almost flunked out my first year because I didn't want to ask for help. Way Way dumb idea. Even now it is very hard for me to ask for help.

I have a good husband that is a reporter & works from home mostly so he can be home for our 2 sons 13 & 9. Most of the time he is really great about doing & saying the right thing to make me feel better. About 10 years ago he hurt his back, & that opened his eyes because he said he could not believe that I could live in pain every day. Our sons help when needed also. I have been in the longest lasting & most painful flare that I have ever had. My oldest asked me today if I was ever happy any more. After I hugged & kissed him & told him yes & went off & cried. It is so not fair to them.

I am able to work 40 hours a week. The people I work with are great. If I need to sit, I sit. If it is a slow day they call & tell me to come in later or leave early. My husband & kids do much of the housework but I'm still the main cook. My youngest son told his brother that he would never be a chef(like he would) he would only be a BAD waiter. LOL We have 2 cats & 2 dogs 1 of the cats is male(sorta) but the rest are girls because the male hormone levels are way high.

I have been on most all of the NSAIDS but had to stop because I developed kidney disease. Then we added more pred & Depen. That was ok for a while then tired Gold shots got a rash. I waited till after I had all the kids I wanted before starting on MTX. I love it!!! MTX worked great for many years then last summer I was not getting the relief as before so we added Arava. After a couple of months I was doing great, had energy. This May everything went to hell. I get chronic sinus infections so Enbrel has been out. this month my RD told me that I had run of of other choices. We had already had the "not long to live talk" if we can't control your disease. So thats where I am. I guess I will take the Enbrel or a new drug that is in clinical trials. My RD was really upset & I felt like telling him that everything would be ok.

Don't ever give up fighting. Your family & friends can help you if you let them.
Belinda