Health insurance is neither healthy nor insures health

My HumatroPen...growth hormone injection pen device

Photo description: A green plastic case with grey lining, holding a white and lime green cap, two pen injection needles in sterile packaging, and the pen device that is white & lime green with a dial on the right and the orange and clear medication vial on the left side.

I was so happy a couple weeks ago that my endocrinologist's office finally got in gear and responded to one of the drug companies' patient assistance programs.  A representative from Eli Lilly worked with me to get set up on my growth hormone replacement while they worked with my insurance (for free!).  The case worker would call me when more information was available as Blue Cross Blue Shield of North Carolina would not tell her which type of synthetic growth hormone was in their formulary.  It was amazing, I was hopeful....until I get a series of weird phone calls that hinted that not all was well in pituitary medicationland.

My campus pharmacy called on Wednesday telling me that a medication was called in and they wanted to know what to do with it...but couldn't tell me in a voice mail which medication they were referring to or which doctor called it in.  Thursday morning I received a voice mail from my endo's office saying that they called in a prescription for Omnitrope (a different drug company's medication....I was initially prescribed Humatrope from Eli Lilly).  Today I get a call from the representative at Eli Lilly that my insurance won't cover Humatrope and I will be dropped from their medication program.

A corporation, in this case an insurance company, should not be able to tell my doctor what medication I should be put on.  If they want to go that route, they need to be transparent about what they will or won't cover.  I should not have my health screwed up like this.  This is medication that will likely have a copay beyond what I can afford (my current monthly health expenses are 25% of my paycheck....that doesn't include making payments for my surgery, or any of my doctors to hit my deductible).

The sad part?  Somehow this is still "affordable" according to ORomneyCare (the Affordable Care Act was initially Romney's idea, not President Obama's).  Somehow, I need to treat my body like my car (something that I have to insure to be able to use), but I don't get to choose whether or not I have a body, or what kind of body.  I didn't choose this clunker, but I do have to live with it.  I treat this clunker as well as I can with what I have, and while I don't tend to love my body, it's the only one I have.  Want to know what's more broken than this body?  The United State "healthcare" system.

Commuting while crippled

Minnesota MS 150 bike ride, June 2007

Photo description:  This photo was taken in 2007 at the MS 150 bike ride in Minnesota.  It was taken on a paved bike trail with grass and trees in the background.  I'm on a seafoam green road bike (skinny tires and curved handlebars).  I am visibly fat wearing spandex black cycling shorts and a jersey that says "Erik's Bike Shop" along with a white and teal helmet with a blonde ponytail visible.  I have dark sunglasses and a smile (although I didn't see the photographer...I was just having fun!).


The past few years as a graduate student, I've had a pretty constant gripe about the difficulties I've had with transportation to and from the campus.  I live within what would normally be considered "walking distance" from campus, which means that I live about 0.75 miles away from campus (which I could wheel if the hills wouldn't flip me backwards out of my chair).  As a kinesiologist (someone that studies human physical activity), I deal with ableism, both internalized and from a sociocultural standpoint.  It's compounded by being fat, with the standard response to being both fat and gimpy is "just get off your ass and you wouldn't be fat OR gimpy."  Yeah, right. *sarcasm*

Non-walking options are also prohibitive.  Handicap parking lot passes run about $325 for the school year (and does not guarantee a spot that is actually walking distance for me, or safe when I'm wheeling).  The city bus system doesn't have a spot nearby (as my home is considered close to campus).  The "special needs" bus requires a one hour window for a ride, which is not feasible with my schedule or my actual health care needs (and that's when it actually works....it is notorious for losing appointments).  I've asked my partner to drive me to campus, but it costs more gas (as he works from home usually) and it grates on my fierce need to be independent whenever possible.

I've been toying with options.  I've wanted a moped for about a decade now ever since I saw a Vespa scooter, but I would need a three-wheeled scooter because of my balance and my shortness.  I would also need money that I just don't have right now (the cheapest trike scooter I've seen is about $2,000 and the one I've been drooling at from Auto Moto with a roof is about $4,000).

Another option that I've wanted to pursue but can't afford is a recumbent trike.  They aren't that common, although recumbent exercise bikes in gyms and rehab facilities are.  This style of bike would allow me to bike without worrying about tipping over or dealing with legs that randomly give out on me.  Just like the moped, they are way out of my price range with most of them above $1,000 (and the good quality ones like the Catrike are at least $2,000).

My bronze crutch rigged to my red commuter

On Monday, I gave my old commuter bike a try.  It's a youth Giant brand mountain bike that I bought when I first moved to North Carolina (I nicknamed it the Red Dwarf Giant because of the small size).  I had a bike shop in 2008 swap the tires from trail tires (which are thick and nubby and make road riding more difficult) to commuter tires (that are thicker than road racing tires but smooth).  I tied my forearm crutch to the handlebars, which doesn't help with my balance and proprioception issues, but at least I have it to help me dismount and walk around campus.

Photo description:  Photo taken outdoors at a bike rack with a bush in the background.  It shows a bronze forearm crutch attached to the handlebars of a red commuter bike (hard to see because of the bright sunlight and bush in background).

How did it go?  Well, it was rough.  My partner helped me get the bike ready for me and we had to do some on-the-fly adjustments.  The seat had to be lowered significantly because I have to be able to reach the ground with my legs while on the seat....which means that I can't pedal in an efficient manner (and makes it much more difficult to pedal, especially up hills).  I'm also unable to stand up and pedal to tackle hills.  I was a sweaty mess for my meeting with my faculty adviser (thankfully my adviser is also a kinesiologist, so the "freshly exercised" look is pretty normal in our departmental offices).

Since the ride to and from campus wasn't too bad, I tried it again on Tuesday.  My rear end was sore because I wasn't wearing padded shorts and my seat is an original factory issued barely padded beast.  The seat position, while rectifies part of the problem with my balance, makes any incline hell on my body and my spine.  Being able to get to campus without using gas is great, but it hurts and burns energy that I still don't have.

This morning, I had to ask my partner to drive me to school.  Not only has biking blown through spoons that I sometimes don't have, it seems to have eaten the energy I need to get to work and to do my scholarly activities.  Just crawling out of bed, getting into the shower, getting dressed, and grabbing the easiest breakfast option left me feeling like I needed to go back to sleep because of extreme pain and fatigue.  I managed to get through my four hour shift, but I'm not sure if I can manage to get my reading done for class tomorrow, or if I'm going to be able to go to the intermediate tribaret bellydance class tonight.

The bike commuting experiment may continue, but we'll see what happens.  Money really has me stuck between a rock and a hard place.

Cyborg Dance Projekt week 6: Four zills forward, a couple steps back

New elastic on old zills

Photo shows pale fingers with plain brass finger cymbals (zills) strapped on with white elastic.

I was feeling pretty ok yesterday, which for me means that my pain level was around a 5 or 6 according to the pain tracker I use on my iPhone.  My brain was a bit squirrely,  so I figured a good trio of dance classes would be pretty ok based on how I was doing (I was still in enough pain that trying to read or write was going to be difficult, but dancing....that I felt like I could do).  So I headed for the studio for the ATS levels 1 & 2 classes, with the possibility of my usual 8:15pm class to round it out.

The first class went fine.  I knew that doing bodywaves would be hard on my spine, so I did less of them.  I stood back sometimes and watched (because mental rehearsal is still part of rehearsing!) and sometimes I would hold the wall for support.  I felt ok (thanks in part to pain medication taken before class), so I decided to stay for the next class.

 ATS level 2 went really well, but I didn't have the chance to stand back to rest and take in information like I did in the first class.  I was having fun with a pair of zills that a classmate let me use (these beautiful Saroyan Afghani zills that I didn't think I would be able to play because of the size...but I used them the whole time!  She also showed me an awesome zill elastic trick using hair ties).  I was sweaty and happy, but trying to ignore that my spine was getting tired.

I stayed for the last class just because I wanted to...I knew my spine was getting tired, but Melissa is cool with me modifying anything I need to modify.  Instead of drilling, we've been working on musicality in fusion bellydance (shared vocabulary between cabaret and tribal styles using different accents or register).  It didn't take long for me to need to use the wall for support, or to squat while listening.  Towards the end of the class, my cyborg bits were just done and I sat on the floor for the last bit (but still danced).

When I got home, my body just started shutting me down.  First with wicked exhaustion, then with my right glute squeezing the nerve so hard that I couldn't put weight on it.  My partner had to help me get to and from the bathroom because it felt like I was being stabbed with a screwdriver in my rear.

It's taken me a few days to get that irritated nerve calmed down to the point that I'm not limping and wincing as badly.  I think the lesson is that three classes back-to-back, no matter how well I feel that day, is just too much for this aging gimpy body, at least for the foreseeable future.

Pain medication and quality of life

Roll the die to see what happens

The photo to the right shows a fist-sized twenty sided die usually used for tabletop role playing games.  The "20" is face-up.  It sits on an envelope that says "do not bend" handwritten and in a red stamp.

TW: brief mention of disordered eating and dieting behavior

Ever since my last couple appointments with the pain management doctor at the orthopedic clinic, I've been trying to wean off my opioid medications even though I'm still in moderate to severe pain.  It's amazing how, even though I don't believe the research he cited is sound, even though my physical therapist said that medication is fine if it keeps me as active as possible, even though my pain levels contribute directly to unhealthy markers of higher blood pressure (mine is usually normal if I'm not in pain) and mental unwellness, and even though I'm still healing from surgery six months post-op, that I still internalized the messages about how narcotics are BAD and EVIL and I shouldn't use them.

I feel like this is a scary game I'm playing, whether consciously or not.  I'm currently at work, writing this in between phone calls, fighting myself on whether or not I should take the medication.  It makes me groggy.  It makes me overly chatty.  It messes up my short-term memory.  I haven't eaten enough to take it properly.  I'm leaving work in about an hour and a half and I can't/don't/won't drive impaired.

There's a part of me that loves it that I made it this far....but it feels like the old ghosts of diets past, just in a different form.  Instead of "good job for not eating breakfast and only eating carrots for lunch," that little voice is saying "good job for not listening to the pain signals and pushing through"....even though I will be completely shot and out of spoons for doing anything when I get home, whether that's my scholarly work, working on relearning choreography, or fun stuff like reading or video games.

What makes this different is that while food is fuel, and denying myself the fuel necessary for life, it could be argued that the medication isn't necessary.  The medication gives me side effects that I find obnoxious.  If the medication more consistently would allow me to be a functional member of society and have a better overall quality of life that allows me to pursue my goals (get my PhD and be able to dance), this probably wouldn't even be an issue.  The medication involves a metaphorical dice roll in which sometimes I roll a 20 (like Tuesday night with the dance class) and sometimes I roll a 1 and then I lay in bed pretending to comprehend the hours of Star Trek: Deep Space Nine that I stare at on my iPad because my brain is too foggy.

Roll the die, take the pill, have an Alice in Wonderland moment?

Six Month Cyborg Birthday

My surgical x-rays from January 16, 2013

Photo on the left shows two circular x-ray films.  The top is a front-view of my screws and rods into my vertebrae, the bottom is a side view that shows how long the screws go into my vertebrae.

It's been a long six months and today marks my half-year cyborg birthday.  I'm not quite sure what to say as this hasn't been the journey I expected to be on.  My mind is full of things that I thought I would be able to do by now.  I thought I would be walking without assistive devices.  I thought I would be able to walk the mile from home to work & school.  I thought I would have just a nagging pain that Tylenol or Advil could ameliorate (or maybe the occasional opioid when pain would keep me from falling asleep).

I knew that there were things I would probably never do again.  I would probably never run again, but I had hopes that I could walk 5k races and eventually be able to train for a walking marathon (because completing a marathon is still on my bucket list, along with see every continent and being an extra in a movie).  I knew that I would be limited in my weightlifting capabilities (I wrote about that in my post "Mourning the loss of my one-rep max").

Most of all, I expected to be back at my intellectual fittest, and that's the most frustrating thing right now.  I went back to work about two months too soon and probably should have taken a leave of absence for my coursework, but since my job and my health insurance are tied to my student status, I couldn't.  I'm not sure if my brain would be back where it needed to be if I took the three to six months off that I should have taken.  All I know is that between pain, spasms, nerve problems, and fatigue, my ability to concentrate on my scholarly work (or even reading fiction for pleasure) is severely compromised.  I don't even play video games as much as I used to because of it, and my ability to concentrate while playing board games or tabletop role playing games is so low that my friends have to make allowances.  I'm still fighting through a personal essay I'm working on for a book chapter, and the last 25 page paper I need to write for my Spring semester incomplete is trapped in cognitive purgatory.  Even several blog posts are stuck because of my brain fog.....the wheel is turning but the hamster is narcoleptic (I refuse to call it dead....I'm still working and still writing a little, and still managing to do some things in life that give me happiness).

It might seem as if I regret having the surgery by seeing what I've written.  I'm upset that it hasn't worked out the way I imagined.  I'm upset that my L4/L5 spinal joint is already showing signs of compressing the nerves into my legs.  I'm angry that I now deal with spasms that are painful and cause me to accidentally kick my beloved Bela cat (who has made his own amazing recovery and is now a 15 pound orange love beastie).  However, I am in less pain than I was this past November and December.  I haven't been to an Emergency Room for pain since before the surgery.  I haven't had a pain spike so bad that I couldn't breathe for an extended period of time.  I can walk through a grocery store most of the time, albeit aided with a cart or assistive devices.  I'm also slowly getting back into bellydance via my Cyborg Dance Projekt.

I don't regret the surgery, but I really wish that it would have gone better.  I knew going in that my pituitary birth defect would make this journey difficult and increase my chances of the surgery failing or not helping.  At this point, I just have to try to keep hoping that it will get better.  If nothing else, if my cognitive abilities don't improve, being a doctoral student in the sociology of physical activity & sport is going to be extremely difficult.  I enjoy sociological thinking, but it doesn't come naturally to me.  Science is my first scholarly language, but I find sociocultural scholarship more rewarding....but combined with this new post-op/cyborg/healing brain, it's exhausting and painful at best.

Here's to hoping that the next six months lead to a better overall quality of life.

Week 3 of the Cyborg Dance Projekt

The first time I balanced a sword (2006)

Photo on the left was taken in 2006 at a small Renaissance festival in northern Minnesota. The background is a tent with warm-colored tapestries in browns, oranges, and maroon.  A doumbek drum sits on the floor near me.  My hair is shoulder length and light auburn.  I'm wearing a black tiered skirt, a black tunic, a silver belt with coins and bells, a large Kuchi necklace.  My hands & arms are shoulder height and I'm balancing a delicate silver scimitar on my head.

 On Tuesday, I went to the intermediate bellydance class that I've been going to at Twisted Dance.  The weather was absolutely dreadful, I was exhausted and in pain, and there was part of me that really didn't want to go.  I have this lingering fear that I will find some movement that will cause major pain, or will cause my legs to give out, or will give me that unnameable pain that makes me just burst into tears.  Dancing does still cause pain, and it does still relate to nerve irritation, and I am fighting pain that doesn't have an immediate "stop doing that right now" signal.

Despite a crummy day, I managed to get my butt to the studio with ye olde forearm crutch in tow. There were only 2 of us plus the instructor (maybe people are scared off by the drill-centricness of the class, or maybe 8:15pm is too late for most folks).  The class was pretty informal, but that helps because it allows me to pay more attention to my movement.

We warmed up, drilled mostly layering movements (mostly hip and shoulder shimmies with slides, pops, and figure-eights), and cooled down.  My hardware area gave me a few protestations that felt like they were addressed by making smaller movements.  I also noticed that I'm getting more flexibility back as well as it was the first time since surgery that I could touch my toes with straight legs (to give a point of reference, I used to be able to put my hands flat on the floor behind my feet).  While this is a victory on some level, it was a reminder about how easily my L4/5 joint can get messed up (I already have nerve-related signs that the nerves are irritated....I may need to get another fusion when that gets bad).

Later that evening, I had a pretty bad delayed reaction to dancing.  Every time I put weight on my right leg that night, it felt like I was being jabbed with a large flathead screwdriver in my glute.  That feeling has been on again, off again since Tuesday, but combined with more overall nerve crumminess (which I exacerbated by dancing and modeling on Thursday morning.

I'm toying with going to the same instructor's class tomorrow as she's teaching a sword class, but I'll need to see how my overall balance is before I try to take a class that requires balancing a dangerous-looking object on various parts of my body.  Even if I'm in a lot of pain, I'll probably end up going just so I can play with my favorite dance prop.

The Projekt will be on hold until mid-July as I will be going to Minnesota for my annual trip to see friends at CONvergence and my family afterward.  Expect a few "flying with wheels" types posts as I'm bringing my wheelchair.  My balance and walking/standing tolerance has been too inconsistent to just rely on a cane or crutch both for travel and getting around the convention hotel.

Fitness, fashion, fatness, frustration

Bad photo with tight top

So I use a neat survey site called CrowdTap that asks various questions about various companies and products, one of them being Old Navy (I generally love Old Navy as my fashion preferences are usually pretty plain but functional and semi-sporty).  I got the opportunity to sample their Active line using a coupon that gave me a pair of compression pants and a top.  I was pretty excited, but a little nervous since the coupon was for in-store use only and their plus sizes are offered only online.  I generally fit in their XL or XXL straight sizes, but their sizing is consistently inconsistent.

The photo to the right shows me, a pale short & fat woman, wearing fitted black capris with teal trim on the calf, black socks, fitted teal top, with my right hand on my hip, left hand holding on to a table for balance.

So I went to one of the local shops with my partner to see what we could find.  I was really excited by some of the colors, but really dismayed that it was hard to find anything I wanted in anything bigger than a medium.  I lucked out and found some compression pants (which seem to help with some of the leg spasms that I get when I try to work out using my legs) that were in my size with teal mesh insets (ON calls the color "Pirate Cove").  The coordinating tops though stopped at a women's XL.  Since I own some of ON's tops in XL, I poked through the rack to see if I could find the biggest XL I could find (I think my other half was confused by this until I showed him the several inches difference between the biggest XL and another XL of the same color).  I decided to risk the smaller size as the only options in store for the XXL were an eye-piercing pink and a see-through white.  I'm not comfortable with how the XL hugs my tummy rolls and the sleeves are too tight for a good TRX workout (or anything with a lot of arm movement).

The photo was taken for the CrowdTap challenge that gave me the free clothes.  The top would be awesome in the right size for working out at the gym as the fabric is a nice technical (quick-drying) fabric.  The pants would be awesome if they were a bit shorter (but I'm 4'11" so I think everything should be shorter!) and if they had a drawstring in the waist to keep them up.

I just wish I could find the XXL top locally in the teal "Pirate Cove" color!  I also wish that the plus size clothes, especially the activewear, were available in stores because of the odd sizing issues that I always have with them.

Self-care versus obligations



My surgery x-rays showing the screws & rods

I'm at my "day job" all day today, my fourth 8 hour day since surgery on 1/16, and my third full work week.  I'm a 3.5 month old cyborg, and my body is telling me, in one of the most fierce ways possible, that I'm doing too much.  It's almost finals week, and I have been wracking my brain all day (in between my job duties of answering the phone and greeting people at the reception desk) trying to work on something that is supposed to be due by email in less than an hour.

I started the day with severe fatigue that didn't decrease after two cups of caffeinated tea, extra B-vitamins, and a prednisone (to help my poor adrenal glands out since my pituitary gland doesn't know how to do "proper" stress responses).  The severe fatigue left my brain just barely able to get to work and be at work, and every attempt at working on a project left me with my eyes trying to close (combined with the fact that I'm trying to do a non-traditional project, and the feedback left me wondering if I had enough time to either fix what I was doing or scrap it and do something completely different but in the realm of more traditional scholarship).

I'm left with a lot of panic, both panic at the project itself and panic at my body/brain's inability to actually do this work right now.  I feel like my body is trying to tell me that I shouldn't have taken classes this semester, that I shouldn't have gone to work, that I should have listened to the surgeon's advice to take 3-6 months off both work & school (note:  I really don't know why I split work and school these days.  At the doctoral level, my schoolwork is my work;  however, since I don't receive departmental funding, I have an outside graduate assistantship (what I usually refer to as formal work right now).

I'm trapped between academic time and crip time.  I'm petrified of the aftermath of sending an email saying that my work is going to be late, partially because I know that it probably won't be sent until tomorrow as I'm working on a wicked sinus headache (hello North Carolina pollen....or a cold that I may have picked up with my overtaxed, underperforming immune system).  The intellectual work that I have done on this project is all in my head.  There has been a lot of labor done, but it's not tangible for an instructor to grade.

I apologize for having a string of blog posts that are less-than-perky about my situation (I promise that there is a happier post that will be up after the semester is over about my weird home mods to make this recovery more manageable!).  This healing-while-having-faulty-physiology thing is a rough road filled with potholes.  Hopefully the fabulous people in my life will continue to be patient with me :-)

Mourning the loss of my 1 rep maximum

A lonely 15lb dumbbell & my foot

For those of you non-weightlifter types, the title might not make a lot of sense.  For those of you that are, this post is probably not going to be what you're expecting.  I like bending words like this...it's probably one of the reasons why I'm working on my PhD!

Yesterday morning I had my first real physical therapy appointment post-surgery.  I don't know if it was fatigue, PMS, percoset, or just plain absentmindedness, but I asked my therapist if I would ever weightlift again.  She gave me a sad look and said "yeah, sure....high reps, low weights though" and said something about toning versus bulking.

I started crying.  So much of my identity as a person has been wrapped up in my strength.  I loved lifting heavy things and putting them back down in all sorts of ways.  It didn't matter if it was a dumbbell, a piece of furniture, someone's heavy box of books that they were moving, a tractor tire, or a big dog.  I absolutely love the feeling of my muscles getting tight and moving that heavy thing through space.

Being strong was also something that got me through a lot of hard times in my life.  I have had a lot of internalized fat phobia and ableism, but finding that my body type (both the fatness and the dwarfness) was particularly well-suited to lifting really heavy things made me feel incredible.  It showed me that athletic bodies come in a diverse array of shapes and sizes.  It gave me the emotional strength to deal with all the crap that fat folks deal with at the gym.  The gym was a place where I felt like I had control over what happened both to my body and to my life.

Now, I'm mourning the loss of ever finding my 1 rep maximum.  I used to be able to back squat at least 165 pounds (that was the highest I hit in Crossfit before I screwed up my knee....and I would have been able to go higher once I cleaned up my form).  I could deadlift around that much as well (I was being really careful with my DL form because of my already diagnosed spine issues....I was in chronic pain management at the time, including opioids, but was trying to be stubborn and "athlete-like").  I won't even be able to do a 5x5 program like Stronglifts (warning: not a HAES page) because my lifetime lifting maximum will likely be the weight of a standard barbell (45lbs).

The xray of my hardware, day of surgery

This new reality hurts.  I'm not sure if it would have been easier to deal with it had it not been part of a long drawn out process (more like an acute and severe injury that requires immediate surgery).  All of this "will I or won't I be able to do xyz" is exhausting.  It also sets up this expectation that I need to try and see if I can still do something, whether or not it hurts me....particularly because of my embodiment as both fat and disabled and how society thinks that if I can just "fix" being fat, I'll no longer be disabled.

There is a possibility that I may still be able to do heavy bench press work, as long as someone racks my weight (this also means I have to learn to ask for help and accept help more readily, something I struggle with).  I'm not sure if this is a ray of hope, or another weird place where I wonder if I'm disabled enough for para-athletics (I would hope that broken spine + fusion + nerve damage/SCI = eligible for IPC powerlifting, but IPC standards have very specific categories of impairment).  Many powerlifting organizations have bench-only competitions as part of their competitions, if I wanted to pursue them.  I don't know if that would make me happy or if I would just mourn squatting and deadlifting.

So for today, I mourn the loss of my 1 rep max that I will never actually experience...and it hurts.  And tomorrow?  Well, I go back to physical therapy and just keep trying to get stronger, no matter what kind of sport or physical activity outcome comes of it. 

Bodies are always changing, no matter what.  Age, injury, illness, hormones, environment, oppression, emotions....every body, everybody's bodies never stay the same.

Surgically modified scholar!

X-rays of my lumbar hardware

I had surgery on Wednesday, January 16th and spent until Saturday afternoon (the 19th) in the orthopedic wing of a local hospital.  It's been a roller coaster but I have absolutely no regrets right now.  Once my pain was under enough control that I could think, I could tell that a huge component of my spine instability was gone.  No more shooting pain down my legs and no leg spasms.  I was in a lot of pain, but it was different....and sometimes all it takes for a ray of hope to bust through is CHANGE!

I've been trying to put together a blog post about the whole experience, but my writing has been so disjointed that I'm leaving all of those notes for the possibility of writing something more scholarly about the whole ordeal (I'm a graduate student...I'll do a lot for lines on my CV!).  It's been hard and surreal.  I'm sleeping a lot, but never in long chunks.  I'm still clock-watching for pain medication (on an every four hour schedule), but I don't need the walker in my house as much.  I've only left my house twice, but have found that the line between "doing ok" and "dear Dog*, I've overdone it."

It's also been hard to try to get my scholarly work done.  The semester started last week, but most of my actual work has been pretty superficial.  It's hard to read and engage with an essay with a medication haze, so I read in one page chunks.  My writing process comes in fits and spurts, and many times needs to be revised and rewritten several times (this blog post has been in the works for a week, for example).  It's not so much a matter of physically writing as I have a laptop that can be used in bed and Dragon Naturally Speaking with a wireless headset to get thoughts out.  I'm just having trouble doing the cognitive work.

Saturday morning breakfast scholar!

It's getting better slowly though.  I'm hoping to be physically back at my classes this week, even if it means I'm only there for a half hour or hour.  I have my first official post-operative visit with the surgeon on Friday, so I'll get to find out first-hand how everything went.  I'll also be asking a lot of "it is this a normal part of the recovery process?" questions (including some questions involving how permanent some of the nerve damage might be).

Thank you to everyone's well-wishes on this journey.  As I dig through my schoolwork and my various notes about the surgery, there will be more blog posts for you all to read (and maybe more silly photos of me snuggled in my leopard print bathrobe)!


*=Dog is one of my terms for diety, the divine presence.

When your (furry) support system gets seriously ill

 This post is a bit of an emergency post that is taking precedent over several other posts that are in the works.

Bela in his cat tree

Meet Bela, my younger cat.  He's about four years old and I adopted him when he was a little thing.  My friends found him in a restaurant parking lot and took him in, but their cats weren't thrilled with a kitten in the house.  The funny thing is that we all thought that he was a she, and my friends named the kitten Bella, after a character in Twilight.  I found out that the kitten was a neutered male at the furbaby's first vet visit, but just decided to alter the name by one letter since the kitten responded to his name (besides, there are famous Bela guys in the world, like Bela Lugosi and Bela Karolyi).

This weekend, Bela was just acting a bit off.  We weren't sure what was going on other than he seemed to have more nose & eye mucus than usual and he was lethargic.  He wasn't climbing to the top of his cat tree, and we kept finding him in weird nooks in the house (including the dryer...not one of his usual hidey-holes).  Last night we agreed to call the vet and get him looked at today.  My partner agreed to take him in so I could go to work (I've missed enough work because of my spine as of late, so I really can't afford it with impending surgery).

Bela perched on my back, photo circa 2009?

We found out that Bela is in critical condition because of a really high white cell count (the highest his vet had ever seen) and liver issues.  He's been transferred from his usual vet to one that can do an ultrasound and provide 24/7 care, but we still don't know what's going on.  We still don't know if it's contagious (meaning that we have to keep an eye on Serenity, my elder cat.  We also don't know how much this is going to cost, other than his care in the past 3 hours has already hit almost $400, the new vet required a $1,500 deposit, and will likely skyrocket with the ultrasound & the more intensive veterinary care.

All I ask is that you keep him in your thoughts, prayers, or however you keep vigil for beloved things in your life.  If financial contribution is an option, I will not turn anything down as this is all happening just days after I found out that I have to have spinal fusion surgery.  I'm going to put referral links at the bottom of this post to help fund this....so if you have online holiday shopping, please consider clicking through the links so I can afford his care.  If financial contributions aren't possible, but still want to help, check the "about me" page for different rewards programs...InboxDollars gives a referral credit just for signing up (and it's a cash credit), and Swagbucks is how I've been getting a cat pheromone diffuser through Amazon.  If anyone knows any other fundraising options, let me know.

Happy healing thoughts of r'fuah shlemah for my little guy are also helpful.  He's been my little emotional support cat through all of my spine-related travails, from cuddling up by the the fracture in bed to laying on my hip snuggling with me through pain spikes.  I can't imagine life without him.

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Psoas I see my body

For those of you who don't get the anatomy pun, the psoas is a muscle that connects the lumbar area of the spine to the pelvis.  It's pronounced "so-as."

Troupe photo taken in 2008

I've stepped up my deep tissue massage routine because my partner moved in with me several months ago and I can more easily afford to give it the "old college try."  I've been seeing a specific massage therapist at Hand & Stone Massage biweekly for the past two or so months in hopes that I can be the most functional person I can be.  Sometimes that means that she works the kinks out of my shoulders from the combination of office job plus schoolwork plus wheeling plus cane usage.  Sometimes it means that means she wants to try a different technique to see if I can get any sort of relief from the messed up spine joint.  It started out with just getting near the fracture then progressed to glute and outer hip work.

On my second-to-last appointment, she suggested trying to loosen the psoas and asked if I'd ever had this done.  I replied yes and told her how I'd had it worked on when I was bellydancing as it's a persnickety muscle that can get wonky with various shimmies and other lower torso movements.  I told her that I was fine trying it again, even though I knew it involved uncovering my abdomen and having her dig near my pelvis.  This is definitely a sign that I trust my massage therapist.

So when I saw her on Thursday, she asked if I wanted to try the psoas work.  I let her know that as long as she wasn't neglecting some part of my upper body I was willing to try it.  I'd rather know that my shoulders are able to handle my mobility needs and my scholarly work, even though some of my work is going slowly due to the new fracture.

The majority of the massage goes as usual, although laying on my stomach hurts worse than usual because of the increase in spine instability.  She has me roll over, gets to the front of my shoulders and arms, and asks again about the psoas work.  She gets me properly draped to work on my abdomen. 

I quickly realize that I'm a bit nervous about having my belly touched.  When my belly is uncovered, I unconsciously sucked in a bit then had to keep telling myself to stay relaxed.  Every time she moves her hands off the psoas I relax, and every time she puts her hand back I try to pull myself in, then remind myself to stay loose.  It happens every time she moves, and it feels like this is the longest part of the massage (even though I know it's not).  I try to laugh it off with the therapist, apologizing for trying to suck in my stomach.  She laughs in that way that tells me "no worries" (one of the many reasons why she's the person I go to).

Ever since that appointment, I keep thinking about how my relationship to my body has changed as my level of disability has increased.  I've gained some weight recently, although I'm not sure how much of that is due to a decrease in my ability to exercise, if it's a side effect of the various medications I'm on to deal with the pain, or if it's moreso related to my birth defect.  I've never actually been a thin person, and only flirted with being what the BMI considers to be a "normal" weight when I flirted with eating disordered behaviors in high school.  When I was a triathlete, I was still fat enough to be considered a candidate for gastric bypass.  I've never been a small person, and never will be.  I don't have the genetics or the physiology for it, and I'm usually ok with it.

I admit, I'm struggling with my weight.  By that, I mean that I'm struggling with the meaning of my weight.  This is where it's murky and tied to issues of internalized ableism and internalized sizeism, and it's hard to admit as someone who studies both fat and dis/ability in physical activity & sport.  Gaining weight, for most adult people, is considered to be a moral failing.  I had a neurologist, while otherwise awesome (particularly awesome because he treated my education level as a perk not a hassle), start talking to me about calories in/calories out and how weight can contribute to spine pain (correlation =/= causation, as I'm pretty sure I'm in pain because MY SPINE IS BROKEN).  I'm struggling with how people look at my body in motion, how my legs rub when I limp, or how my wide hips fill up my wheelchair when I roll.  In an ideal world (or maybe just my ideal mental world), I would just be another body, getting around however my body-at-that-time gets around.

Ideally, that's how it would work.  That's how I became a fat athlete.  I was just another body in a sea of bodies.  I wasn't the culmination of several markers of Otherness.  I was just a person, doing person-things.  I hope to one day find that happy point where I'm just another body, an albeit fat crippled body, moving around as just another body. 

It's hard when everything is bound up with pain though.  Pain is raw.  Pain is all-encompassing.  Pain is distress.  Pain makes a person take notice to the exemption of whatever else is going on.  Pain makes my thoughts derail, and makes for some long & rambling blog posts.

P/so/as the massage didn't make a difference in my pain, I think it brought to light a discomfort I've been having in my body that was intangible.  There will be more experiences that I'll have that will show me my body in different ways (and you all will get a chance to see the results soon, with photographic evidence).

The future is cloudy

My partner & I at the Carolina Renaissance Festival

I  just want to give you all a quick personal update.  I've spent the past two weeks in the throws of a pain spike that I initially attributed to my fracture shifting.  Last week, I finally went into Urgent Care and have spent 4/7 days in a doctor's office to see what had changed with my mess of a spine.

The short version of the story is that I have another fracture on my L5 vertebra on another stabilizing point.  This is causing neurological signs of spinal cord injury (instead of just peripheral nerve damage).  I'm waiting to hear about the results of an MRI that I had on Thursday to see if avoiding spinal fusion is still an option.

Based on what I've gathered from all these physicians is that I may not be able to avoid the surgery much longer, or I risk losing bowel and/or bladder function along with more mobility problems.  If it was a matter of just mobility impairment, I would probably keep waiting.  However, the combination of pain levels that hover between a 7/10 & a 9/10 (along with the increased risk of loss of bowel & bladder function) may make the surgery a more urgent concern.  While I wait for the appointment with the orthopedic surgeon, I'm pursing a second opinion with a neurologist and trying to see if I can find a spine specialist that performs fusions on people with some sort of dwarfism (I don't want the surgery to fail just because the surgeon doesn't understand that pituitary dwarfism impacts bone density and healing).

In the meantime, I'm doing my best to keep my life afloat in the midst of chaos.  It's hard to do my scholarly work with this much pain, and the anxiety of not knowing what the future holds for my body.  I'm also not sleeping well because of breakthrough pain, leg spasms, and electrical jolt-feelings down my legs.  I'm also really concerned from a financial standpoint, as the US medical system is really broken.

It's hard, really hard.  Hopefully I'll at least have something solid, even if it's bad news.  Dealing with the knowable, no matter how bad, is sometimes easier than dealing with the unknown.

The system is making me broke/n

Serenity, my grey tabby*

As a working disabled person in the USA, our system sucks. Because we don't have socialized health care, a person in my current situation has very few options. I have insurance through my job (student insurance, but still). No job/school, no insurance. I'm unable to work most 40 hour a week jobs due to this spine fracture, so quitting school to only work isn't an option (especially in this economy, especially because disabled folks are discriminated against in the workforce). Part time jobs usually don't have benefits. That would potentially leave me with trying to get on disability to get Medicare to have spine surgery.


This system sucks. If we had universal health care, PwDs could work without facing the potential loss of health care...which would make for more tax payers (yay capitalism). It would also be cost-effective because preventative health care is cheaper than ER visits (and I saw a lot of folks last night at Urgent Care with issues that would have been best treated at a primary care facility).


ObamaCare isn't enough. Look to Europe, Canada, Cuba....look at what economists call "developed" or "industrialized" countries, and look at what we're lacking. Then think back at stories like mine, where I'm literally in tears wondering if our health system dysfunction could inevitably lead me to having to take a leave of absence from school (and work, as my job is dependent on me being a grad student). Please. I know this rant is fueled by pain medication, frustration, & tears, but there's a reason. I'm definitely not the only one in this position.

*The photo is random...just a blurry photo of my elder cat Serenity in front of a stuffed penguin a good friend gave to me.

You don't have to love your body

Today is Love Your Body day and I wanted to give my readers permission to do something that may seem possibly counterintuitive, transgressive, or pessimistic.

You don't have to love your body.

You don't.

Sometimes bodies do things that are out of our control.  Sometimes they are sick, broken, or cause pain (physical or mental).  Sometimes they keep us from doing things we want to do (like bellydance or CrossFit).  Some days our physical bodies interfere with our mental states, and some days our mental states interfere with our physical bodies (I know, false dichotomy, Cartesian-style...but it's still useful). Some days our bodies cause some major issues in our lives, and it's ok to be upset by it.  Bodies can be expensive with medical bills, adaptive equipment, various products taken internally or externally, various foods that either make us feel better or worse, various physical activities that impact us in different ways on different days.

I'm going to be honest and blunt and profane.  Right now, I fucking hate my body.  I'm living in a haze of pain and painkillers and breakthrough pain.  I'm living in a state of jealousy where I envy their ability to do the things that I want to do, and their ability to not just lose words and trains of thought because of pain spikes.  I mourn the loss of my more abled self, even the one that was still in daily pain and nerve problems but was able to still push mentally in scholarly contexts and physically in athletic contexts.  I'm embarrassed by the emails I've had to send to professors and peers about my semi-bedridden life, compounded by the fear that my disability is feeding into popular notions of the fat body as a lazy, inherently broken body.  I'm constantly wasting energy expecting unwanted advice, comments about how my body is something scary and untouchable, and what happens when the "get better soon" well-wishers find out I might not ever get better (and whether or not to just graciously accept the lie or tell the truth).

My STANDard, photo taken in 2007

On better days, I can get to the point where I have a dysfunctional relationship with my body, full of ambiguity and ambivalence.  A day where I can more readily accept the neoliberal notions of body acceptance as an individual process.  Those days where I see the beauty in the dissonance, much the same way as the author from Building Radical, Accessible Communities Everywhere states in this Love Letter to My Body.  Some days I'm able to revel in what my broken body gives to me despite (and sometimes because of) it's brokenness.  My broken body has shown me who in my life is worth keeping around and who isn't worth the few spoons I have in my daily arsenal.

Today is not one of those days...but that's ok.  My fracture shifted two days ago, causing the most pain I think I've ever been in, even greater than when I actually broke my vertebra.  It makes life really difficult right now, particularly with my doctoral coursework.  My pain is not under control, and with the recent change-up in my medical team, there isn't much I can do about it short of going to the emergency room or hiding in my apartment.  It is what it is, and it's one of those times where self-love is a load of crap and I'm dependent on the love of others to get me through....but it'll be ok.

See, I don't have to love my body, and neither do you.

Trusting in the system

Pic taken in 2009 by Dave Stagner

A "comrade in spine crap" of mine started going to the same orthopedic clinic that I've been going to for pain management.  I've had a pretty decent relationship with my nurse practitioner there, so he started seeing her as well.  I saw her in the beginning of August, and he saw her towards the end of the month.  He found out that she was leaving at the end of the month, and I think my jaw hit the floor.

I felt like I'd hit the jackpot with this person.  I was able to be frank with her about symptoms and pain, to express my Health At Every Size standpoint, to let her know that I was a bit of a medical geek and had done a lot of research about my various spinal conditions as well as my birth defect-related minefield.  When I was trying to figure out if I should pursue spinal fusion, she gave me some markers of impairment that she thought were appropriate signals to revisit surgery.

So I found out from my friend that my NP left at the end of August, and that she didn't tell me at the appointment.  My first feeling was betrayal, then mourning, then panic.  I take narcotic pain medications and muscle relaxers daily (up to four times a day depending on the medication & how much pain I'm able to tolerate).  She understood that I usually refused to medicate my pain enough because of the side effect problems (want to try to do deep sociological analytic work while on narcotics?  For me, it's extremely difficult).  She also didn't treat me poorly because of my deep understanding of my various medical conditions.

You see, when your physiology is complex enough that general practitioners won't see you (seriously...my university's student health center has told me this recently, which makes life more difficult because my insurance requires me to use them for "general health" needs), there can be this tendency to latch on to any professional that doesn't treat you like a freak of nature.  I latched on to her fiercely.

Now?  I'm feeling lost.

I wouldn't even be seeing her for another month or two because of my prescription refills and our mutual understanding that I might just get slowly worse.  We both knew that I'm losing function and feeling.  We both knew that there was no literature about spinal fusion success in people with pituitary abnormalities, and that I wasn't willing to be a case study (well, if someone would put me as second author maybe...just kidding).  She was forthright but gentle, and had one of those faces that always seemed to tell me that life sometimes sucks but it's worth the fight.

She never told me to quit school.  She never told me to quit my job.  She told me to keep being as active as I could.  She affirmed my athletic identity.  She did tell me to quit powerlifting (I didn't initially listen...I'm stubborn when it comes to something I love).

Now I have to either trust whoever takes over her position or find a new clinic.  I have to trust that, whichever option I chose, the provider will treat me with respect, will respect my knowledge of my physiology, and that will understand that my pleasant face is many times just a mask hiding pain and uncertainty.  I have to hope that I won't be shamed for my fat and that my broken spine won't be pinned on my size.  I have to hope that the person knows that sometimes my medication noncompliance is due to my scholarly work that I refuse to give up even though it becomes more difficult, both because I'm a doctoral student instead of a masters student and because the pain seems harder & harder to manage.

I have to trust in the American medical system to help make it ok, and I'm petrified.

Being a doctoral student with chronic pain

Starbucks cup stained with lipstick & mocha

Since I've been busy with school, work, coping, and being under the weather, I'll leave you all with this image that seems to sum up my current experience as a doctoral student with chronic pain.  A significant portion of my budget is dedicated to emergency caffeine (usually in the form of Starbucks because it's near my office), hence the cup.  A mocha is my usual preferred caffeine intake mechanism as it provides enough substance in my stomach to be able to handle pain medication when I'm hurting too much to eat properly.  The lipstick is significant because I generally only wear makeup when I'm really struggling with pain.  The messiness of both the chocolate stains (some from carrying it from the student union to my office, some from sipping it between phone calls) and the lipstick stains remind me of how messy my life is on the days I hurt, how my brain is sometimes just a mash of colors that might be pretty where they "ought" to be, and the lid representing how I would normally try to keep everything hidden if I could.

Coffee mess as art....

Stairs versus elevator: Round 1...fight!

Ableist to say the least, moreso with the taped Braille

I was on Twitter and came across a tweet from Amanda at Fat Body Politics that really got my brain going.  The tweet had this photo of an elevator button panel (the photo on the right).  This photo has been going around my Facebook feed between my physical activity & public health scholar friends and my body size & dis/ability activist friends, with some varied results.

Many of my public health & physical activity-minded friends talk about how every day physical activity needs to be encouraged, like taking the stairs instead of using the elevator (also called "non exercise activity thermogenesis" or NEAT for short).  Sounds pretty benign huh?  What this seems to lead to is architecture that places stairs in a very easy to find and access places and the elevator in an inconvenient (many times hidden) place.  The other mode of thinking with this style of architecture is to keep the elevator more clear for folks who need it (people with mobility impairment or people hauling carts of equipment), but it can backfire.

So what's wrong?  Well, I'll use my personal experience as an example.  On days that I use a cane (or when my nerve damage wasn't as severe, on the days that I could manage without a mobility aid), I have to make a bunch of choices when I need to get to a different floor of a building (the same decisions happen with entering a building that has stairs, just sub "elevator" with "ramp").

Can I safely use stairs today?  Am I feeling my legs well enough to not trip going up the stairs or fall down the stairs?  Will taking stairs that are closer to my destination use more spoons than trying to find the elevator that's tucked away, nowhere near my current or final destination?  Will taking the stairs lead to pain that makes me unable to work, do scholarly activities, or even work out (and do more efficient physical activity) later in the day?  Which option will cause me less social grief as a fat person (because my body is seen as proof that I am sedentary simply because of its size)?

Not all disabilities are visible.  Some disabilities wax and wane in their visibility (see my post PassOut for an example).  A lot of invisible disabilities and illnesses involve a huge energy management component, and elevator usage can help that person live a more fulfilling life....when we aren't barraged with messages that tell us that we're horrible people for using the elevator for a "short distance" or that we're fat/out of shape/sick/disabled because we don't use the stairs for whatever reason.

As a doctoral student in kinesiology, I would love it if people were more active.  It's what I study.  It's something I'm passionate about.  But...making healthist remarks about elevator usage doesn't help people become less sedentary.  It's shaming and shame doesn't help people become healthier and happier people.  Shame creates stress and the biomedical literature shows over and over again that long-term stressors (like shame, bigotry, and structural inequality) create less healthy people.

So instead of creating more problems in people's lives over whether or not taking the stairs is a part of their healthy life, how about this.  We make sure that both modes of transportation are clearly marked in a way that encourages people to listen to their bodies, keeps them safe, and keeps them happier in the long run.

Back from Gen Con!

Me cosplaying as Oracle posing with Jennie Breeden of the Devil's Panties

I just got back from Gen Con (aka the "best four days of gaming") and I'm exhausted.  I thankfully had some pretty uneventful flights with Delta Airlines (so I probably won't be posting a "Flying with Wheels" post about them like I did for US Airways & United...and I'm pretty happy about it).

This was my first Gen Con, and it was pretty exciting.  Because of my experience with using my cane at CONvergence, I decided to just bring my wheelchair.  I'm really glad I did, even though the carpet in both the hotel & the convention center were hell on my shoulders.  This was the biggest con I've ever attended (at least 5 times bigger than CONvergence) and was spread out over the entire Indiana Convention Center plus all of the neighboring hotels. 

I made this scalemail dice bag!

Trying to alternate between wheels & a cane just wasn't going to happen because of distance.  I also wouldn't be able to guarantee when I was going to suddenly run out of spoons, something that could have kept me from attending events that I had prepaid for (like a Shadowrun Missions game, a Pathfinder Society game, a NASCRAG charity game, and a scalemail dice bag crafting workshop).  I also didn't want to be doped up on pain medication because it impacts my cognition & creativity...traits that I need to have fun while gaming.

Bringing the wheelchair also gave me a quick and dirty way to do a little cosplay, something I've wanted to do for a while but hadn't managed to put together a costume that is flying-friendly.  Armed with my wheels, a Batman logo shirt, a headset, and my iPad with Batman logo on the back, I cosplayed Oracle, aka Barbara Gordon.  She's one of the few comic book characters that uses a wheelchair (the only other one that comes to mind is Professor X from the X-Men comics).  Since she's not generally "in the field" much like other heroes, she doesn't have a specific costume, which makes cosplaying her both easy (minimal props/outfit) and a challenge (trying to be recognizable as her instead of just a nerdy wheeler). 

Crosswalk in downdown Indy with accessible lane

Despite the carpet, the difficulty I had finding elevators in the skyways, and the problems trying to navigate crowded halls full of distracted people, it was a pleasant trip.  There were times where I would find other wheeling folks (particularly other manual wheelchair using folks) and we would just smile at each other in between hard pushes to get down the plush carpeted hallways.  A friend that joined me for the con says that the carpet didn't feel padded from a walking standpoint, but I had to ask her to push me a few times so I wouldn't give myself a rotator cuff injury...and it led to an interesting discussion about universal design.

I also had a chance to meet a few folks that I've only met online through our shared geekery of City of Heroes (an MMORPG).  Meeting up with them was a little difficult just because of the barely accessible skyway, slow-as-molasses elevators, and the normal difficulty of navigating restaurants that have tables and chairs too close to each other for easy wheeling (I've had to learn to speak up and be more assertive to get through these situations...it's still hard for this introvert though!).

I'm planning to go back next year, finances and work willing.  I have plans for making some of the stressful things more manageable, better plans for hitting up the exhibition hall in a more relaxed way, and ideas to make the most of my time & energy without feeling trapped in a strict schedule (especially since it's the weekend before the semester starts).

Wheee!

Questioning medical decisions

The other day, a campus employee stopped through on his daily route in a great mood.  He's been having a rough time lately, the details of which I didn't know...until he came in with a "life is good" expression on his face.  My supervisor asked him what was going on, and he jovially replied that he was going to have lumbar spinal fusion surgery on Monday.  The state employee health insurance finally approved it (after at least one appeal).

He went on to say that he had chronic back pain for years, but more recently had referred pain down one of his legs.  His doctor told him that this was now an urgent matter and he needed to have his lumbar spine fused.

Spinal nerves & connecting tissues

His comment about the referred pain being an emergency situation put a certain anxiety in my mind.  I've had this broken spine mess diagnosed in 2008.  At first, aside from moderate pain, I didn't have too much trouble.  I was still belly dancing with a troupe, dancing 10-15 hours a week plus other exercise.  When I failed out of conservative treatment options (physical therapy, epidural injections), my orthopedic doc told me that my options were either pain management (medications) or spinal fusion.  He proceeded to tell me that spinal fusion has a low success rate, and even when it does provide relief, it tends to make the neighboring spinal joints unstable making further fusion surgeries necessary.  I was advised to not do the surgery until I started having nerve problems.

Fast forward a couple of years.  Eventually, I quit dancing as I figured out that the spinal movement required in belly dance aggravated the messed up joint (with an L5 vertebra that wouldn't heal, partially because it wasn't immediately diagnosed).   I kept up with other types of exercise from mixed martial arts (non-contact) to CrossFit, until I started having nerve damage issues related to an unstable joint (that lead to a degenerating disc).

With nerve damage symptoms cropping up, I decided to have a frank discussion with my nurse practitioner about spinal fusion surgery.  I was afraid of the risks of the surgery.  The success rate for folks with normal physiology isn't very stellar, and after some spelunking on PubMed, I found that there were no studies about spinal fusion in folks with my birth defect.  Since my birth defect impacts healing (everything from muscles to ligaments to nerves) and bone reformation, spinal fusion seemed like a really poor idea for me.  My risk of the fusion failing because of my body's inability to heal properly is pretty darn high.  This combined with my pain management nurse practitioner telling me to wait until the nerve damage is severe enough to where I'm having bowel or bladder problems has lead me to say no to the surgery, at least for now.

I still can't help but second-guess my decision to say no to the surgery.  Some days I have trouble feeling my feet.  I usually have to look down at my feet to ascend stairs to make sure that they're going where my brain tells them to go.  I've almost closed my foot in a car door thinking it was in the vehicle.  These are just some of the non-pain issues.  I wonder if I could be the statistical outlier that would be helped and not hurt by the surgery.  I wonder if I doubt my decision just because I'm still uncomfortable with using a wheelchair on the bad days.  I wonder if I'm making my already precariously aging body worse off.

I'm trying to decide about getting a second opinion on my spine, this time with a neurologist.  With my crummy insurance though, I'm afraid that my insurance will decide to not cover the costs of any diagnostics.  MRI scans are expensive, and the last time my orthopedic clinic took an X-Ray, my insurance refused to pay for it, sending me a letter saying that they needed a report on my "new injury."  I'm also afraid that the neurologist won't be any more knowledgeable about my birth defect than my orthopod is, and that I'll be stuck between being a case study (doing the surgery) or refusing (and being an irresponsible patient).

Maybe my background in disability studies is what is keeping me from seeing the nerve damage signals as an urgent matter.  When walking isn't the pinnacle of human locomotion, it's not prioritized in quite the same way (at least for me).  Even though I intellectually know that wheelchair use is not giving up, I'm still acutely aware that a wheelchair is seen as "bad" and cane is "better," even when I've come to see my wheelchair as "fast" or "strong" and my cane as "stubborn" or "self-conscious."

There's still a lot more for me to unpack about my current surgery position....so much more.