Hi Lynette. Thanks for the reply. I was told by the doctors nurse about
the upcoming study. She called me and said he wants me to do the trial and will have more information for me later. I dont go back to see him till August too so wont know more till then.
I also try hard to live as normal as possible and have a 14 year old daughter who is starting high school this year. She is always doing cheerleading and athletics and I have to miss lots of her sports cause I cant sit in the bleachers that long. Even that causes me to flare up and any exercise, sun, yard work, shopping etc... She wants me to take her to the mall shopping for back to school clothes and last year I made granddaughter go with her to pick out clothes then when she found what she wanted I went only to those stores to make final purchase but still flared up. I dont know why but physical activity really messes me up.
I used to be so active and walked 5 miles a day but now have to live a new normal but I am still thankful for my life and each day I wakeup and hear the birds singing,see my family healthy and together then life is good!
I dont have health insurance so we have the strain of paying for all my medical costs and a year ago I found out that I have a cholesteatoma in both ears which is a tumor that destroys your hearing bones. After lots of searching I have not been able to have the surgery yet. It involves at least 2 surgeries per ear. The first one to remove the tumor and damaged hearing bones. Then a second surgery at least 6 months later to repair the damaged bones and hopefully restore hearing.
Well thats a little update about me and its nice to meet you!