Medical Hijinx. I coined this phrase several years ago to signal some kind of medical rant as I fought for diagnosis and/or treatment. I haven't had to use it in a while. Today, I'll be using it for its original purpose and for one I never thought I'd have to.
Last year, I finally got an official diagnosis of Functional Neurological Disorder. It came as my body was deteriorating further, and right before the leg spasms turned into dystonia. My new neurologist quickly became unresponsive, leading to two ER visits to try to help my leg. It got worse again in December, so did my neurologist's response time. As I slowly accepted that my left side is now riddled with spasms and muscle weakness, I had a couple orthopedic appointments in the hopes they could help or at least back me up. I only got their support in telling my neurologist to get her shit together or refer me to someone else. I have long preached changing doctors if you feel your current one isn't taking care of you. This was my final paragraph to her; I am sorry you're going through some personal things and the holidays have made things crazy, but if you can't take care of me or don't have time to respond, I have to request you refer me to someone else. It is way too frustrating to be deteriorating like this despite taking care of myself, working out, and having treatment just out of my reach. Thankfully, she agreed with me and is referring me to one of her colleagues.
Now for the thing I didn't expect I would need to rant about.
I was recently admonished for not sharing everything I'm going through on social media, leaving others to *gasp!* ask me themselves. And I just want to say you're damn right I don't share everything, I never have. I simply share more than others in order to get some subjects out in the open because I hate the phrase "we don't talk about that." (mental illness, chronic illness, chronic pain, sensory and learning disorders, disability....)
This goes to a narrative the disabled community is currently bringing to light; our medical history is none of your business. I can't tell you how many strangers ask me probing questions about why I use a wheelchair.. I've taken to answering them the same way I answer curious children: my legs don't work very well.
And while I have your attention, I've accepted that I'm going to be an inspiration, but you better damn well do something with it; don't tell people about me and not have your own accomplishment to share, I don't care how small it is. Get out of bed a few minutes earlier, do a lap around your living room during a commercial break, replace an unhealthy snack with a healthy one, pick up a weight once or twice, sit outside for a few minutes. That's where I started and currently where I am again. Use those small victories to build some bigger ones.
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