I have not posted much lately. For a few reasons.......too hot to sew and having health issues.
Would like to spread the word about a rare genetic disorder named Ehlers Danlos Syndrome.
This is a connective tissue disorder with 6 major types...I have type 3 or Hyper mobility type.
Type 3 is thankfully the least fatal, however very painful. I have dealt with painful joints since my late teens. Always been hyper mobile (double jointed), knees that gave out anytime I went up or down stair and strange pain.
Eventually I was diagnosed with early on-set arthritis but no dr could tell my why.
In the last 5 years I have had 4 joint surgeries, 3 of them being joint replacements...both knees and one hip.
I have been so rheumatologists, primary care, neurologist etc and have been blown off by some of them with suggestions like "Just keep getting your joints replaced until you feel better". Nice huh??
Finally, in January of this year I went to a pain specialist who took one look at my paperwork, asked me one question and was able to dx me with EDS! What a relief it was, at first.
I still deal with daily pain, my cervical spine has severe arthritis, hearniated disc and is curving into a C shape. Both elbows are painful and can lock up. Hands are more than I can explain, so bad, left thumb is dislocated and because the joint is so damage there is nothing that can be done, I wear a brace. Fingers are hyper extending and I will be wearing ring splints soon to keep them in the correct position.
HIps, knees, ankles & feet all affected. I keep my patellas taped or they dislocate often.
So, not sure how much more sewing/quilting I will be doing in the future. I am going to catch up on projects that are sitting in my UFO pile. Then want to make some baby quilts for just-in-case grandchildren.
I appreciate everyone who has taken the time to follow this blog and comment!
