This blog is mainly for fundraising purposes to regain my independence with a service dog. If you’re unable to donate, feel free to just follow my (and Socrates!) progress. All support is appreciated, monetary or otherwise. Feel free to ask any questions! Your questions help me know what people want to know.
About my Disability
I’m 29 years old and live in Indianapolis Indiana. I have a genetic disorder called Ehlers Danlos syndrome, which affects my entire body. Its a connective tissue disorder and most of your body is connective tissue. Mine is too weak, and too stretchy. Ligaments, tendons, fascia, muscles, blood vessels, tissue that supports organs, and more is all made up of connective tissue. I was born with it and symptoms started to present as a child. They slowly progressed and I was diagnosed when I was 16 at the University of Chicago Hospital. Things have continued to progress, and my mobility has been increasingly limited as a result. My joints aren’t able to stay in place on their own, which causes daily subluxations and dislocations with increasing joint damage from them. Repeated dislocations have damaged nerves in my body. My muscles try to help hold my joints in place in addition to their usual job while already being weakened. In the last few years the problems with my muscles have increased in ways that EDS alone didn’t explain any longer and I was diagnosed with Primary Myoclonus. Its a movement disorder that causes more muscle spasms along with involuntary movements. Sometimes Primary Myoclonus is caused by brain damage, and my EDS complications with my skull and neck may have caused that. This all amounts in a lot of pain that never goes away. My body is working overtime just to hold its self together, leaving me exhausted by simple tasks.
The damage and effects of EDS cause a lot of other health problems to occur. One of them affects my heart and is called Dysautonomia. My blood vessels are stretchy allowing blood to pool, and during posture changes not enough blood gets to my brain making me dizzy or black out. Simple things that other people don’t think twice about like bending over to pick up something thats dropped can be impossible for me. It sure doesn’t help that nerve damage has left my hands prone to drop items! Dysautonomia makes my heart beat too fast, and speed up too much with activity. Daily responsibilities can leave me exhausted, as my body reacted like I was performing cardio exercise rather than a household chore. EDS has also given me gastroparesis which means my stomach and digestive system don’t work properly. Being unable to “fuel up” normally with food makes it even harder to have enough energy to get things done!
Many people with chronic illness refer to “spoons” and if you’re interested in better understanding, I highly recommend reading the spoon theory by Christine Miserandino. It really helps explain concisely what its like. In a nutshell, our limitations mean we have to choose what we do on a daily basis carefully. Or weekly basis, as overdoing things one day may mean recovering for days after. This is where a service dog comes in. Its more than performing tasks that I’m completely unable to do, its also about performing tasks that are difficult for me to do so that I can focus on more important things. Is doing laundry right now more important than showering before my responsibilities tomorrow? But what if I need both, because I need clean clothes to leave the house. A service dog putting the clothes into the washer, moving them into the dryer, and pulling them out into the laundry basket can make it all possible.