Unfortunately, I was born with three rare genetic disorders, albinism with legal blindness, an anomaly bleeding problem, and Ehlers-Danlos Syndrome Type III/IV, which is a systemic collagen disorder. Ehlers is one of the most relentlessly painful and restricting conditions Mother Nature could have invented. It is a lifetime of struggle. All my connective tissue is compromised. I cope every day with weak, unstable and hyper-mobile joints that collapse without warning, bone on bone arthritis of all joints, internal tissue tears, compressed nerves, chronic dental issues, bone displacement, constant exhaustion, Chronic Overuse Syndrome, and pain, pain, pain.
What do you say when you need everything and have nothing? I exist on a $900/month Social Security pittance and some food stamps. I have $45/week in cash to live on once the bills are paid. I have never had family support, can't get proper physical help, and 'the system' is broken beyond belief, contrary to most people's ideas and our crooked politicians' delusions. Their numbers don't add up. In my situation if you work part time, you lose more than you gain. I am too poor to even feed a service dog, which I would dearly love to have for companionship and support.
It's not all doom and gloom though. I have always tried very hard to live as normally as possible when I can, and make the best of a bad situation. Unfortunately, it's in bits and pieces. I taught myself from childhood to use my disabilities to their fullest for lack of adequate social services, and I'm still learning every day. On my "better" bad days, I volunteer at a boat building program for at-risk children painting and varnishing wooden boats and doing whatever shop work is needed. I learned to sail through a handicap program in Boston and learned to ski through a handicap program in Maine and love to do both when I have the opportunity and my body can handle it. I love to sew, read, listen to music, do art, and mom my houseplants. I have lots of nice friends. Having Ehlers gives me two choices in life: stay home and go crazy hurting for nothing, or grit my teeth, endure more pain, and get something of value accomplished.
With little to no increase in Social Security for the last three years, things have gotten even more dire for me and will only get worse in the coming year. I am seriously in debt from the last 10 years of just trying to cover basic needs. There are many things that would really help with my health problems that insurance does not cover and that I have no money for, such as:
major dental work, expensive non-steroidal injections in my ankle to keep it from fusing, leg brace supplies (I designed and make my own braces), new orthotics, and an electric bicycle or scooter (I do not drive, and just doing groceries and errands on foot is an exercise in agony).
It's a long list but I would make the best of anything that I raise.
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