I'm starting this blog because I thought it would be a good idea to get my thoughts about my disabilities down instead of just letting them fester. Well, that's not entirely true. My wife suggested it, I think because she thought it would be a good idea for me to get my thoughts about my disabilities down instead of just letting them fester and then unloading them all on her. Awesome and understanding as she is, she really doesn't need all that.
I guess I should probably tell a bit about myself and said disabilities. I am 29 years old and I have walked on a cane since August of 2001. I hurt my left knee at work in what I was told was a repetitive motion injury. Doctors can't seem to come to an agreement on exactly what the hell I did to my knee. Past diagnoses have included torn ACL meniscus, torn cartilage, arthritis and that there's nothing at all wrong and all the pain is psycho-somatic. My current orthopedic surgeon tells me it's patellofemeral pain syndrome and the early stages of complex regional pain syndrome. I have an appointment later this month to discuss surgical options. All I really know for sure is I am in constant pain, I can't put weight on it and I can't stand or walk for anything even vaguely resembling an extended period of time. If I'm going to be out for more than a short trip I have to use a wheelchair.
I recently found out that my liver is all kinds of messed up. I have auto-immune hepatitis (which basically means my body thinks I had a liver transplant and is attacking my liver as a foreign body) and NASH (nonalcoholic steatohepatitis – I don't drink and never have but my liver is acting like I'm an alcoholic, it could result in cirrhosis). I'm a carrier for hemochromatosis (an inability to correctly process iron) and might have Wilson's disease (an inability to correctly process copper).
I might be epileptic. Or I might have some weird kind of migraine that mimics the symptoms of epilepsy but not the brainwave patterns. But the meds are the same so it doesn't really matter I guess. They should also help with the regular migraines I get too so that'll be nice. I get what may-or-may-not be absence seizures when I see flashing lights or flashing color patterns. This means I drift out of consciousness (absence seizures are what used to be called petit mal seizures), I don't get the flopping-around-on-the-floor kind.
I have bipolar disorder and obsessive-compulsive disorder. My bipolar is very rapid cycling, with swings usually lasting a few days, though the changes are sudden and very extreme. My OCD exhibits itself mainly in contamination obsessions and mysophobia (fear of germs), obsessions with symmetry, groups of 3, perfectionism and finding patterns in numbers. I wash my hands a ridiculous number of times in a day and I can't stand to have others touch my food unless I know they've washed their hands immediately before.
In addition to that I also have several congenital heart defects and asthma. Less seriously I also have a hiatal hernia, a torn esophagus, arthritis in my neck, a bad back, shitty peripheral vision and I wear glasses. I also probably have central auditory processing disorder (it's kind of like dyslexia but with hearing) but we don't know for sure because they only found it recently and they can only test for it in kids. In short there's so much wrong with me that when I die I plan to just donate my body to the Mutter Museum.
I'm currently in the process of fighting with Social Security to try to get benefits. I'll keep you all posted on how that goes.
My plans for this blog are to talk my experiences as disabled person, to discuss disability issues, and to not start so many sentences with the word “I.” I chose to finally start this blog now because I wanted to take part in Blogging Against Disablism Day on May 1.
Right now my bipolar is Slightly Depressive.
Right now my pain level is 5.
