Friday, April 5, 2013

Eleven weeks

Author with auburn hair cut to the chin, wireless glasses, holding a dark blue-purple mug in front of her mouth.  Mug reads "Innsmouth Academy 1798" with a stylized Illuminati symbol
Me & my nerdy "Innsmouth Academy" mug
I've meant to blog, but a combination of fatigue, trying to stay on top of school, and get back to work have kept me from doing much "extracurricular" writing (or really much of anything fun that doesn't involve laying in bed or on the couch).  Because of the surgery, I've had to learn to do a lot of things while laying down....doing schoolwork for instance.  I think that's been one of the hardest things to cope with honestly.  I don't work well from home, so to be forced to not only work from home but ALSO work while laying down (without falling asleep) has been incredibly frustrating.  Heck, this post was started several days ago but is just now getting finished and published.

I've also struggled with what to say at this point.  I'm still in a lot of pain, but I am doing better.  I'm walking with a cane outside the house, but have been unable to use my wheelchair because I cannot sit upright long enough to make it a useful form of locomotion.  I haven't hit ER-necessitating levels of pain (thank goodness).  I would have to say that I'm at where I was about a year ago...taking prescription pain meds a couple times a day but able to walk short distances (about a block, maybe two at most).  The pain still interferes with my sleep, despite medication.  My balance is better, although I've lost even more feeling in my legs post-op (some of that may be temporary though).  I now have muscle spasms in my legs, which I didn't have before the surgery....but hopefully those are temporary as well.  Any nerves that were touched during the surgery, even just to move them away from the surgical field, get to have an unhappy synapse party for months after the surgery.  Any nerves that were freed (like the smashed nerve that the surgeon found), will take an extremely long time healing....if they heal at all.

This is where my body gets really complicated by my birth defect.  Since I'm not on the growth hormone replacement I ought to be on to treat my hypopituitarism & pituitary dwarfism, my body is going to take even longer to heal all of this mess....the cut muscles, the angry nerves, the vertebrae that need to figure out how to make friends with a chunk of cadaver bone to create the fusion, the vertebrae that now have titanium screws as uncomfortably close neighbors.  This was one reason why I tried to avoid the surgery for as long as I could....I knew that my particular biological reality would make this really difficult and take much longer than someone with "normal" physiology.

Black and white photo of the author, a fat woman wearing black cycling shorts, a jersey that says "Erik's", a helmet, sunglasses, and a ponytail.  Bike is a road bike with thin tires and close curved handles.  Text reads "I STAND for fun physical activity for all. Weight =/= health"
My STANDart poster with my racing bike
I think the hardest part of the whole ordeal is just wondering what my life will be like in the future.  Will I still need a wheelchair for longer distances?  Will I be able to walk without a cane?  Will I ever be able to run again?  Will I ever be able to use my beloved racing bike that sits underneath my house (that I still can't bring myself to sell).  Will I ever get back to powerlifting or Olympic weightlifting?  Bellydance, hooping, African dance, spinning poi, kickboxing, Crossfit....  Will I ever be free from prescription pain medication?  Will I ever have my full mental faculties back, free from pain & medication (even for small chunks of time to do my scholarly work)?  When will the fatigue lessen to a level where I can do more than just work and go to classes?

I'm trying to not feel bad when people ask me how I'm doing.  I had the most progress the first month, and it feels like I've been in a holding pattern since then (I know intellectually that's not true...I'm able to sit for longer periods of time and I've restarted physical therapy).  I still have to decide what to tell people when they ask how I'm doing.  Do I go with my usual Minnesota-nice and say "just fine" when I'm struggling with the feeling that my body is trying to get rid of the hardware Alien-style?  Or when I can't get out of bed without taking pain meds, to just be able to get up and get moving?  Do I pretend that I'm making more progress than I am?  So many of the questions are the same as pre-surgery, and that just makes the emotional component of healing harder.  From my completely unscientific putzing on the Spine-Health surgery forums, it seems like weeks 10-16 are the ones where the depression and anxiety hit the hardest.  So many questions, and so little (comparatively speaking) progress.  This is the real hard part of recovery.  It's like hitting the wall in a marathon.

For now, I'm just trying to keep on keeping on.  I'm struggling with a work/school-life balance as I scholarly work takes so much extra effort that I find myself wanting to use any "spare" energy to actually enjoy myself (shock & awe! grad students have fun??).  Any low-energy free time has been spent with the great American past time: TV (via Netflix & Amazon Prime on my iPad).  I'm twitching to get out of the house and work out, go to a coffee shop and write, hide in the library and read....but my life is on crip time, and crip time does not live harmoniously with graduate student/scholar/worker/"normative" time.

Now, my friends, I need to get horizontal and my brain is too foggy to keep trying to write coherently.  As the journey continues, I'll try to write more often....but it is the last month of the semester and I have a lot of work to do if I'm going to manage to get all my work completed (the goal is to not take an incomplete in either of my classes).  I realize that trying to stay in school this semester was probably not my smartest choice from a health standpoint....but from the good old American fiscal standpoint, I had no choice.

On a lighter note, if anyone has suggestions for things to watch on Netflix or Amazon Prime, feel free to post a comment with your suggestions :-)


  1. Stupit question perhaps, but where did you get that mug?

    1. Sorry i forgot to reply to this comment...I got it from WeLoveFine...they have a bunch of gamer stuff, including this one from The Secret World :-)