New blog, not really an old journey

Welcome to this new writing adventure of mine.  While this project new, this topic isn't anything new for me.  I tend to define myself by a lot of things that I used to do.  I used to belly dance semi-professionally.  I used to hoop dance, take West African dance, do triathlons, participate in charity endurance cycling, take mixed martial arts classes, do CrossFit...I'm a very physical and physically active person.  I'm also a lifelong fat person, something that no amount of exercise has ever changed that significantly...I just come from "good sturdy genes."  I've also been known to push through despite pain and injuries (because that's how athletes usually roll!).  Speaking of pain and injury...

I broke my L5 vertebra in late 2007 and because of preexisting L5/S1 spondylolysthesis (vertebral slip) it wasn't discovered until early 2008.  The disc between these two vertebra has also degenerated, so I have a lovely mess in that one little joint.  When the fracture was discovered, I did what a good patient does, particularly a good dancer-athlete-patient, and followed my doctor's advice.  I did physical therapy.  Despite a clinic that was marketed as catering to athletes, the physical therapists didn't know what to do with a belly dancer.  I have pretty amazing body awareness in my torso because of dance and this caused me to "fail" out of physical therapy because I was already doing the "right things" for my injury.

Because of this failure, I've been dealing with long-term pain management care.  I've decided against the only surgical option that currently exists, which is spinal fusion.  A large part of this decision is related to the pretty abysmal success rate of spinal fusion, which is complicated by some unique physiology I was born with (the short story is my pituitary gland didn't form all the way, so I'm a pituitary dwarf with other hormone deficiencies).  Long-term pain management is a strange place to exist in.  It means that I've been on prescription pain medication since 2008 and I've tried an epidural injection to try to help.  Sadly, the injection didn't help and I've been on my current regime of Vicodin (a narcotic) and Flexeril (a muscle relaxant) since 2010.

I've been following my orthopedic nurse practitioner's advice by staying as active as I can despite pain and other symptoms (something I would have done anyhow...I love being active).  I stopped belly dancing in 2011 despite many attempts to keep at it, but it is one of the activities that guarantees pain and numbness in my legs.  Because of structural instability, even gentle and "good for bad back" exercise hurts me.  Honestly, if it was just pain, I would be able to push through to do the activities I love (I did slightly modified CrossFit post-fracture, before I tore cartilage in my knee).  I'm now at a point where I have too much numbness in my legs and literally have to watch my feet when I walk because my proprioception is wonky.  I'm also really wobbly and have had some falls, along with a scary near-fall in a busy shopping center parking lot.

So that puts me here now.  I had a heart-to-heart with my NP and I'm soon to become a part-time wheelchair user so I can get around more safely (and more efficiently).  I've owned a cheap wheelchair that I use in a pinch to go grocery shopping or to wander the mall when I'm having a bad mobility day, but now that I'm at the point where I need wheels more consistently, I'm trying to get my insurance to pay for a lighter weight manual chair that I can use for getting around campus and hopefully getting into some adaptive sports and dance opportunities.  I'm trying to get my insurance to cover it, but as a brand new PhD student with crummy student insurance, I'm not sure how much the insurance company will help, or how much hell they're going to give me to cover it.  It may end up being a completely out-of-pocket expense, which if that happens, it will mean selling my beloved triathlon bike (that I haven't been able to use for a couple years but I've not wanted to sell in hopes that I got better).

So, there's the groundwork for this journey.  It'll be an adventure in emotions, cultural perceptions, political and educational systems, and interpersonal dynamics.  I'll warn you all that I'm a budding academic with a brand-new shiny masters degree and going on to a doctoral program in sociohistorical studies in kinesiology (I study how culture, gender, disability, body size, and identity impact how people move, exercise, do sports, & dance).  Feel free to let me know in the comments if something doesn't make sense...I'll also try to link to things that make some concepts clearer.

Welcome to this space!
~Casey