Ehlers Danlos is a very painful disease. It affects the connective tissues in your body, they do not form properly and as a result are weak and elastic. Sometimes they call people with this disease "benders", or "Elastic Man" because we are typically double jointed in all of our joints, and we frequently dislocate.
I was diagnosed at age 10, and I have tried my entire life to be careful as to not worsen my disease with how I lived my life. For example, I am 6'5" tall and I am 300llb'er but I would never consider, nor did I ever consider playing HS sports because I knew my joints could not handle them. As an adult, I picked a profession that was not labor intensive, and would allow me miss work on days when the pain levels were to high to go out. When it came time to have children, my wife and I decided to adopt because I couldn't live with myself if I knowingly passed this on to my child. Recently, we adopted our first, our pride and joy Ella Grace Boddie.
Even with all the precations, I knew my joints ( my disease) would make it's natural progressions.In fact, the Doctors told me I would be in a wheelchair by age 30. I am 40, and thanks to modern medicines, and prothesis they no longer feel I will ever be in a wheelchair.
Recently, my disease took a pretty significant jump in seriousness. I have been with the same organization (as a sub contractor) for 17 years, working as hard as my legs would let me, typically 30 to 40 hours a week. In doing so I have been able to provide for my family, even though I have had 11 operations in the past 10 years. These operations were to go in and "clean up" joints, and repair hernias to allow me to continue to work. The recovery times for these operations have been small 4 to 6 weeks and we were able to plan, and sock away enough to scrape by for those 4 to 6 weeks. I the last year my hips have started to really degenerate badly. We at first resorted to pain managment through modern Pharma. I take 22 pills a day, and spray Fentanyl 3 times daily under my tongue.
I have reached the point where even with all that, it is tough to work the amount I need to toprovide for my family.
So, the solution seems to be a double hip replacement at 40 years of age. The problem that it presents is this. They will not do both hips at the same time, and because of the recovery time for an Ehlers Danlos person (it is double the normal person), I am looking at the potential of being out of work for 12 months.
I have access to some resources, but not enough to last for 12 months.
My plea is for help from all of you. A little or a lot, every amount will help.
My goal is $20,000 to be safe. Any excess at the end will be returned to a person who needs it, using this website.
I don't have the time to apply for and recieve Social Security, it take 11 months minimum before you see a penny form that options. Additionally, my plans are to return to work when all of this is over.
If you can help, I would be grateful.
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