I've been on the app for about a week now, and have commented here and there, but thought it might be time for an introduction. I apologize in advance, I can be long winded.
I'm 36 from Indianapolis, a stay at home dad due to my condition, and a former chef. I also majored in history and philosophy, so you can see why I might talk a lot. I have (almost) 5 kiddos, with the 5th due next month. The oldest is 18 and about to start college. So you can imagine I had a pretty busy life until recently.
Three years ago I was diagnosed with Syringomyelia, stenosis in 7 vertebrae, and 2 pinched root nerves. It was causing me intense pain and bouts of weakness and fainting. I was eventually hospitalized for 2 weeks and had to learn to walk again. My doctor was sure that losing weight (sound familiar?) would help. So I lost 50 lbs, and was able to continue my Chef career for another two and a half years, with some minor accommodations.
Last May, my wife noticed a visible bulge in my spine between my shoulder blades. That sent me back to the doctor and eventually back into the mri machine. It was discovered the scoliosis was due to bulging discs, so I was referred to a pain clinic and more tests. In December I was hospitalized due to increasing symptoms. I had been pushing myself through the summer with the intent of getting into the best possible shape, but by winter I was losing balance and unable to sleep. I was assigned a new neurologist, who after reviewing my medical history, including my list of strange injuries in high school, sent me for genetic testing for Ehlers Danlos.
Good news, I know have a good comprehensive diagnosis that explains all my symptoms and what may have caused my issues. Bad news, I now know the prognosis. I've gone from running 4 miles a day to using a cane in six months. As you can imagine, that's a bit of a mental blow.
So that's my story. My daily struggles are with pain, weakness, and staving off the emotions and depression. I'm hoping being part of a community like this will offer me new perspectives and a caring space to be vulnerable.