CMT type 4c1, hEDS, PsA, Fibro, Ichthyosis

I wish Drs wouldn't laugh off multiple diseases. Even a dna test didn't help. " only thier clinical opinion matters, not a dna test.
I paid for my own dna test because Drs said I was lying, faking, just wanting attention, that I WANTED to be sick, and much more.......for SIXTY SIX YEARS!
The dna test got me permission to see a pain clinic where, on the FIRST visit, I was diagnosed with hEDS. ( what, you mean being "double jointed" isn't normal?)
I was diagnosed with rheumatoid Arthritis about 10 years earlier, but when my toenails all fell off, my rheumatologist was excited, saying, " YES! I know what you have!" It seems that is what Psoriatic Arthritis does. But I can not tolerate any anti inflamitories or bone builders they gave me, and he swore according to my blood work, I don't have anything! (Step back)
So, I no longer see a rheumatologist even though xrays show OA and the damage the PsA has caused
I actually have a couple drs that believe me now and have had surgery on my back, twice, so I can walk again. It seems I should have had surgery for scoliosis while I was growing up. I am sway backed and scoliosis goes side to side so much that my ribs sit on my hips.
Keeping my weight down is hard because I can't excersize, but I am constantly being told to lose it, but I am in the overweight category and not obese, yet.
Can't expect everything to go right.
I am on a matainance regime which still leaves me in alot of pain, but I can walk a few miles a day. Better than not at all, I have been that low before. According to the neuro surgeon I will be again.
I am alone, other than my husband. Nobody wants to be around someone who can't go shopping all day.
I do love gardening and that can be done as I feel able. My irises are my best
That is my life. I hope you enjoy your's...