I am so thankful to find this group and appreciate all of the sories, it is helping to read about these challenges we are facing.
I am a 52 yr old woman, healthy lifestyle and eating and after years and years of seeing doctors who diagnosed me with Ankylosing Spondilosis, Arthritis, tendonitis, carpel tunnel, COPD (and I dont smoke), cronic migrains, optical migrains, Hashimotos and Celiac disease, I finnaly was referred to a great rhumatologist who gave me the appropriate tests. She said I have MCTD, Lupus, RA and of course Celiac and Hashimotos, this all makes sense now after being so sick for yrs, I also have cronic GI issues. I was often passed off because of my athleticism and my career as a welder/sculptor.
I have always been a super athletic outdoors person and a proffesional sculptor and gardner. The worst most depressing thing is, I am at the height of my career as a public artist with many great projects under my belt and I feel as if I am at my peak of creativity with so many opportunities coming my way but I find the work of welding so debilitating, I can only work maybe 2 hrs every other day lest I have a major flare-up. Im super depressed that I will have to give up the work I have dedicated my life to, even now I am struggling to complete a project for a beautiful Library.
The other part is Family, My husband, the love of my life has finally gone into remission from metastatic prostate cancer and melanoma, so now he has to see me this way in pain and suffering all the time, not being the happy vivacous me. I lost both parents last year and sadly My mother had a similar autoimmune disease, on a feeding tube for 4 years and finnaly passed due to complications at 78. I am absolutly terrified Im going down that same path. I feel as if Iʻm in a vortex and I canʻt really talk to my husband as he will get too depressed and my stepsons are doing their own things and busy with their life.
I find myself just going and laying down in bed at like 6pm...I feel exausted in pain all the time, I have always been the caregiver and now I struggle to be that person, I feel trapped by this disease.
My husband was cured by an experimental medication during a trial at UCLA, I am hoping there is more research into this condition and will be on the lookout for study trials.