5 generation long of Rheumatoid with a splash of Cerebral Palsy
Hello, my name is Grace and I am 38 years old. Yes it's true RA has been a never ending plague in my family. My mothers fathers side. First let me tell you,I am a victim of malpractice . Dr failed to show to my birth,delayed air to the brain and POW I had cerebral Palsy. I had grandmals till I was 12. But let's really discuss why I am here! RA.
RA from what we know started with my great grandmother ( my mothers father) then his sister Alison had RA. Alison's story is sad because no one really saw her. Her husband had put her in an institution and could never find her. Years later they would find things out about her and that she had passed away. My grandfather never got over that and I was always curious of "aunt Allison"
My aunt Elizabeth " buzzy" was next, my grandfathers middle daughter. Her case was the worst drs had seen. She was diagnosed I think in "89" hers was like a freight train. Nothing slowed it down. She had a rod in her neck, so her head didn't collapse, everything was disintegrating. After operations and trying this and that she would have other operations, so much went on I can't remember it all. "Buzzys" last hope was trying stem cell treatment. I forgot where she and my uncle went to but she felt like a million bucks. She was so happy for about a month and then she called my aunt kitty, the eldest of my moms sisters and she knew it was over. She was back to where she was. I can't remember all the meds she took but she carries a suitcase as we all know of her meds and all the supplements. She had a stroke that winter and never got better. She passed away June of 2000
Now to my mother and I
It very strange but we were diagnosed the same day. I had had a feeling I had RA or OA, everyone kept saying " no you don't have it, you probably hurt from the Cerebral palsy. Um, CP isn't painful. I made my dr's test me as my mom went off to John Hopkins for a series of test. Sure enough I had RA and would find out also have OA probably from the wear and tear of living with CP Both of my factors were positive,mom had 1 positive1neg. I take MTX- panquil. I live on a five mg of prednisone, if I don't I have flares constantly, and frolic acid,fish oil, vitamins- you know the drill. To have CP, OA and CP is quite tiring and at times because I'm worn out my thinking is fuzzy and yes I cry cause I'm so worn out. Sometimes I feel really alone and sometimes I feel I'm a burden to my boyfriend even though he is my life savor.
When was your last flare?