Tuesday, July 30, 2013

Does your heart beat only for this person?

My claddagh ring on my left hand
The photo to the left shows my hand, a pale small hand with side fingers on resting on a black keyboard.

Those of you that know me personally probably already know this (the magic of Facebook status updates!), but I figured that a grand announcement on my blog was also in order.  On June 17th, I proposed to my partner and he said yes.

One of my reasons for writing this post was to really say something about why I proposed.  I also wanted to address where that puts me in the cogs of society's expectations of couplehood.

Ever since I knew that my partner and I were serious, I swore that I would not get legally married until I could marry whoever I chose, regardless of sex/gender.  This was important to me because I've dated people of various genders, and I felt like I was using opposite-sex relationship privilege just because I had it.  The reality is that I felt like I had to choose which parts of my identity I was betraying.  I have disabilities and I really need to know that if something happened to me that my partner would have the power to make healthcare decisions on my behalf.  I'm a working class person that doesn't have the finances to do the paperwork that would give me somewhat similar rights and benefits that marriage would confer with a cheap marriage license.  I had to hope that my health doesn't get any worse and that I wouldn't need to access Medicare (the US health system for the elderly and disabled that requires poverty to access) because of marriage penalties for disabled folks on SSI/SSDI.

In short, while I've chosen my partner as my beloved, I had to slog through intersections of classism, dis/ableism, and heterosexism to decide if I wanted to take the legal marriage plunge.  These decisions take some of the romantic heat out of a marriage proposal....but I think that this kind of analysis of "the personal is political" makes our engagement even more meaningful.

So for the fluffy details, we're going to get married in Las Vegas, Nevada and we're aiming for December 13th, 2013 (date not final though).  My partner has always wanted to get married in Vegas by an Elvis impersonator, so we're going for a campy fun wedding.  We're planning to wear geeky costumes (as we both want something that we'll be able to wear again, so cosplay was a logical conclusion).  We're inviting any of our friends and family that can make it to Vegas for the event.  I'm putting together a wedding webpage that will have all the details (including registries...Target, Amazon, and ThinkGeek, in case anyone is curious).  We're currently undecided about having a reception back in North Carolina....I'm still recovering from surgery, and the combination of time plus money is difficult in our lives.

So there's the big news *grin*

The title of this post comes from this link on Offbeat Bride.  It's a part of the Klingon wedding vows (if you ever doubted my geekiness....)

Sunday, July 28, 2013

Flying with Wheels: Happy geek!

MSP airport, jetlagged at the baggage claim
For those of you that didn't see it, I have a few other "flying with wheels" posts that you can take a look at.  Here's last year's posts about my annual trip to Minnesota on US Airways and back to North Carolina on United and here's the post about flying on United to and from San Francisco.  I think as I fly more, I may add a link to my blog gathering these posts for ease of use.  These posts can get a little long because of detail, just FYI.

The photo on the right shows me, a pale fat woman, using a manual sports wheelchair, wearing jeans, a black shirt, a wide brimmed Renaissance-style hat, with a brass forearm crutch held between my legs and an army green purse.  The background is the Minneapolis-St. Paul International Airport baggage claim with strangers in the background.

I got back on July 9th from my annual trip to visit my family and friends in Minnesota (I started writing this as I got back...but my brain issues as of late delayed this).  Part of the trip is to spend 4 days at CONvergence, a medium sized sci-fi convention that I absolutely adore (it's about 18 times smaller than San Diego Comic-Con, just for reference.  CONvergence was just under 7,000 people this year). 

Because of a discussion with my partner and my good friend (both of whom were coming with this year), I decided to bring the hat (see last post on the awesome jaunty hat dilemma) as well as the wheelchair and one forearm crutch.  They both told me that they could help me with whatever carry-on items I wanted to bring with so I could deal with the crutch and the chair cushion (that gets removed from the chair before boarding and stowed in an overhead bin as it's too wide for an airline seat).

We were flying US Airways (my hands-down favorite airline because of how they've handled my mobility needs in the past) to Minneapolis with a layover in Washington, DC.  We checked some of our luggage at the ticket counter for ease, and had a pretty smooth check-in and TSA security process.  Learning from previous flights, I rolled up to the conveyor belt, deposited my bag, shoes, jaunty hat, and my crutch, and scooted close to the Star Trek-looking scanner.  I told the agent that I should be able to stand long enough for the scan.  He then gave me a wooden cane to use to get to and from the scanner while my things were security scanned (along with the wheelchair wipe-down for bomb-powder or drugs).  Despite my best efforts to not get frisked, my jeans were slightly bunched behind my knees and I got a partial patdown.

When we all got through screening, we had enough time to snag some milk so I could take some pain medication and muscle relaxers....but we slightly missed pre-boarding (I blame the carpet at the GSO airport....carpeted ramps are evil for manual wheelers).  It wasn't a big deal though because the gate agent got me my wheelchair tag quickly and without fuss, double-checked that I didn't need an aisle chair.  Since the plane wasn't full, the agent bumped the three of us to the first row!  That was awesome as the first row usually has immovable arm rests, which mean I don't have to fight my brain telling me that the human next to me isn't soaking wet with warm body fluids (hooray for nerve damage giving incorrect information *sarcasm*).

The first flight was uneventful as was the second.  Reagan International Airport in Washington, DC isn't my favorite one to navigate while gimpy because of the sheer number of elevators and escalators (my last trip through that airport involved around 10 elevators), we managed to have our arrival gate and departure gate near each other.  We had a bit of a scare at first because we thought my seat was in an exit row, but we managed to get that cleared up.  We were split up on this flight because of some check-in coordination issues (not all the tickets were bought at the same time), but I ended up dozing off watching episodes of Arrow on my iPad instead of being social.

Our arrival at MSP was pretty smooth as well.  Airline baggage handlers always manage to muck up the velcro on my chair, but both my partner and my good friend have traveled with me enough to know how to fix everything without my directing (perfect because I always have to find a bathroom when we land, regardless of length of flight!).


Our trip back to Greensboro was equally uneventful.  We had two main frustrations.  The first one is that we didn't do the online check-in the day before the flight, so there was no way to change our seating assignment.  The second was that the MSP TSA (the gate security folks) usually fast-tracks wheelers in the security line because we hold up the line with our equipment and the extra frisking....that didn't happen this time.  I did get split up from my partner, but my friend was there behind me to help with my back, hat, and whatnot. 

Once we got to the gate, I prayed that the gate agent would be able to do something about our seating situation.  We were slightly split up, but my friend and I were in the very last row....which was pretty darn difficult navigating with my wonky balance and a crutch (thank goodness for pre-boarding for "special needs" so I wasn't falling into people).  The plane was too packed to do anything though, and I found out the hard way that I never want to be in the back row again because the seat was set at a permanent slightly-reclined position (I have to sit straight up....any leaning back puts pressure on nerves into my legs and causes severe leg pain and spasms).  It was a long flight, but it could have been worse.

Our layover was in Charlotte, NC, which is one of my favorite airports except for the carpeted ramps.  Thankfully my good friend thinks it's amusing to push me up the ramps while running (and she doesn't run quickly so it's not scary....although I don't have handles on my chair, so she has to be precise holding my backrest).  We had enough time to wander a bit and catch dinner (sushi!!) then wander our way to our gate....where I rode the moving walkway in my chair (I know it says not to, but it's fun).

Our short jaunt from Charlotte to Greensboro was pretty awesome.  The plane was maybe half full, so we got to sprawl out as much as we wanted to.  The flight attendant thought we were amusing (I blame the hat and the non-traditionally colored crutch).  I was happy that I got to sit next to the window, which is something that I can't do very often depending on who I'm traveling with and how my body is behaving.

Flying through US Airways has consistently been good with my wheels and adaptive equipment...it also helps that they are usually the most economical airline for most of my travel needs.  Thanks again US Airways & your employees.

Friday, July 26, 2013

Week 5 of the Cyborg Dance Projekt: Triple threat!

Devil duckie plus my first pair of real zills from FCBD
The photo to the left shows a green rubber duck with devil horns and four brass zills (finger cymbals) circling it on a black table.

This has been a weird dance week.  I spent the weekend trying to figure out how to set up the online tech rehearsal for the Arabian Spices online show and sent several semi-frantic emails to the coordinator of that show....with no avail, no response, and no way to get anything in motion.  So unfortunately, this end of the performance isn't happening, and I'm really bummed.  It was going to be my first time performing with Xavier Shadowdancer!  And my first performance in a good several years.

I suppose it was probably a blessing in disguise.  When I was running through the choreography dvd to make written choreography notes, my spine was giving me distinct "don't keep doing this" and "please stop" signals.  I was figuring out ways to modify movements for the performance (and for my dancing in general), but I had already opened the Pandora's Box that is my spine issues.

On Monday my back had recovered from the mild abuse so I was thinking about taking a level one American Tribal Style (ATS) class that is also on Tuesday night (before the class I've been taking with Melissa).  It's been in my mind for a while since I took some classes with Fat Chance Belly Dance in 2005-2006 when I was in San Francisco (even made it to a few level three classes!).

Tuesday came (and still no response about the online performance) and I had such a bad day at work that I had a meltdown when I got home.  My lovely partner told me that I should go to the class and just see how it went.  If I felt like doing the level one ATS class plus my usual class, or even toss in the level two class (for a total of three classes, back to back), then I would.

Amazingly, I made it through all three classes, albeit partially due to just needing to keep my mind off everything that made me angry.  Some of the ATS moves were still in my muscle memory, some of them made awful crunchy sounds & feelings that caused me to have to modify or cheat the move, and I vehemently avoided leading (ATS is a group improv style where someone has to lead and cue the movements....there is no choreography). 

The last class (my usual intermediate non-ATS class) was probably not in my best interest, but I wanted to take Melissa's class and I really didn't want to leave dancespace.  I didn't end up hurting myself, although I was having trouble walking afterward....and I did fall in my apartment later that evening while cleaning (not a bad one, but my leg just stopped working while I was crouched).

The aftermath?  I've actually been good sore the past couple days in my quads and hips....something that I always love because it means that I actually was able to exercise with enough intensity to feel like I worked out (instead of just feeling like I hurt myself with my spine).  My spine pain hasn't been reduced at all, but it didn't get irritated either.

Since it's the day before the Arabian Spices online performance, I'm still miffed that I didn't get a response to still be able to be a part of that neat show with Xavier.  I guess I'll just have to make him dance with me some other time (up for some fab cab one of these days hun?).

Now I just have to figure out how to pay for more dance classes (and new zills, and other dance goodies)!!

Tuesday, July 23, 2013

This blog has a Facebook page!

Since Google Reader no longer exists and the other RSS options aren't working as well for me, I decided to make a Facebook page for this blog:  https://www.facebook.com/PartTimeWheeler.  I also post updates to my personal Twitter account:  https://twitter.com/stitchgnomercy.

While I'm at it, here's a link to my GoodReads profile....it's a mix of fiction and scholarly stuff (and sometimes fiction that I'm reading for scholarly work, and scholarly things I'm reading for pleasure).  I log most of my fitness stuff through Fitocracy as Gnomercy (although they lack wheeling fitness options....they do have wheelchair basketball and wheelchair racing though!).  I'm also sporadically on Tumblr as StitchGnomercy (same as Twitter), but mostly just repost things I've found.

Saturday, July 20, 2013

Thoughts of a pain-addled insomniac narcoleptic

My furbabies being snuggly together
Photo on the right shows my cats Serenity on the left (a grey medium hair tabby) and Bela on the right (an orange short hair tabby).  They are facing the camera, snuggled together, both looking sleepy with their front legs tucked under their bodies.  They lie on a light blue blanket.

It's 4:15am as I write this and I realize that so much of my public writing revolves around my spine-related issues, while much of my life is much more complicated.  It's true that part of the reason why I am awake is because I was in pain and my usual dose of pain medication plus muscle relaxant and supplements isn't allowing me to even doze off briefly.  But to pin everything on spine-related pain (whether bone, neurological, or musculoskeletal) is a half-truth, and I don't think I talk much about the rest of my complicated body.

There's a part of me that feels adamantly about being open about my physiological differences.  There's another part of me that worries that being so open about my body, my experiences, and my life will cause me future harm in the form of employment discrimination.  In the end, my personal narrative is pretty darn unique and I've never actually met another person that has my birth defect.

So, I was born mostly blind in my right eye from an optic nerve that didn't completely form (optic nerve hypoplasia) along with a pituitary gland that didn't form all the way (hypopituitarism).  My doctors' concluded that I had an aneurysm at the point in development where the optic nerves, hypothalamus, pituitary gland, and similar deep skull structures develop.  When I was a born, the optic nerve issue was obvious due to having lazy eye and I had doctors concerned that I had a brain tumor until I was around six months old (I still have to explain to new doctors that I didn't have a brain tumor as it's the most common cause of my interesting set of circumstances.

To make this more complicated, knowledge of what it means to have a pituitary gland that has never worked properly is still in its infancy as an area of medical inquiry.  The pituitary is the "master gland" of the body that works as the supercomputer that works with all the glands in the body to keep hormones circulating properly.  The part of my pituitary that is too small is the anterior section that controls growth, reproductive capability, metabolism, stress response, and others.  Related is the hypothalamus, a brain structure that communicates chemically with the pituitary to keep all sorts of bodily functions going in the fabulous cyclical fashion that human bodies usually exist in (like sleeping!).

Because of my hormone deficiencies, my body doesn't heal properly so my joints are hypermobile, it doesn't process food and nutrients well (which led to my gallbladder removed in 2003), the protective sheaths of my nerves don't regenerate properly (mimicking some aspects of multiple sclerosis along with decreasing exercise tolerance), and I've had chronic pain since I was a teenager (and exacerbated by car accidents at 13 and 17 and my later spine fracture and resulting spinal cord injury).  Because of my hypothalamus, I have mild narcolepsy with occasional cataplexy (my body doesn't get the types of sleep it needs so I'm usually exhausted and prone to falling asleep during the day).

A lot of this has been a part of my personal reality for most of my life, although some of these things had no labels.  Sometimes I just have to look at how much impact that one little blood vessel made in my life before I took my first breath.  I try to stay curious about my body when I can, partially because of my scholarly inclinations (I took a senior level biology course in Endocrinology while finishing my bachelors degree in health psychology to try to learn more about how my body functions).  The other part is pure self-advocacy. The average endocrinologist has never seen a person with hypopituitarism, and if they have, it was an adult with a brain tumor, not someone with pituitary dwarfism.  The average doctor in general practice or other specialty usually knows a little bit about thyroid function, but very little about the pituitary as a whole.

I have to know because I want to live the longest, fullest life I possibly can, which is a difficult prospect as there aren't many studies about people like me.  The few articles that do exist show shortened lifespans, particularly if the hormones aren't supplemented with costly daily injections that insurance doesn't cover, plus stress doses in case of emergencies and illness, pills that mimic the body's natural cycles....on top of quality of life issues like chronic pain and the inability to get restorative sleep.

In the end, this really just means that for a bunch of different reasons, some from birth and some picked along the way living life, I'm usually in pain and usually fatigued.  I don't sleep well even if I try to "binge sleep" because of narcolepsy and pain.  Sometimes my brain just shuts down for a microsleep when it's inconvenient.  It's just my life and I'm thankful for people that push past society's usual ableist norms (and help me push back against internalized ableism).

Off to listen to a Dresden Files audiobook in hopes that James Marsters' lovely voice allows for some much needed rest!  If anyone has questions, please ask....with a rare set of physiological circumstances (sometimes known as a "zebra," which is medical slang for a rare disease or condition) and perpetual intellectual curiousity, I don't mind talking about most aspects of my life (especially the sociocultural aspects of illness and disability).

Thursday, July 18, 2013

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?

Wednesday, July 17, 2013

Week 4 of the Cyborg Dance Projekt

My crutch plus hip fringe
I was in Minnesota from July 2nd to the 9th, so I missed two weeks of the project.  Since I didn't dance at all (but did watch bellydance at CONvergence!  Posts coming later this week on the convention), I'm counting this as week four!

Photo to the right shows a bronze forearm crutch leaning against a dance studio mirror with multicolored fringe hanging on the cuff of the crutch. Some of the fringe is almost as long as the crutch is tall.  The crutch is slightly reflected in the mirror behind it.

I've been having a rough week since getting back from Minnesota.  While I was physically active on vacation, I didn't do any dancing or physical therapy type things.  I also went right back to work without taking a day to recover from the trip.  Needless to say, my body did not feel like it could handle a dance class....but I knew my mind, heart, and soul needed it.

So I posted on Facebook that "I had a two week dance hiatus because of my trip to MN and it's been a rough several days because of pain....I'm still going to go to class, even if I have to sit my butt on the studio floor and pretend that I'm moving in my head, damnit."  My awesome instructor replied with "I'm sure I can figure out something for you to do on the floor" with a smiley emoticon.  When I saw her before class, I let her know that I was being a little dramatic and just needed to get thoughts out, but that my two week break from dancing showed me that my little Projekt was doing more good than harm (I really wasn't sure if I was just being stubborn because I wanted to dance or if I was seeing some sort of biomechanical benefit along with the pain).  I also realize now, in retrospect, that I had taken prescription pain medication before class, so I think I was being overly chatty and rambling.

Sure enough, my gimpitude inspired a seated drilling class where we focused on really isolating some of our body parts.  Necks, shoulders, chests, even a little hip and glute work (which amazingly did not irritate my spine like a lot of glute work does...probably because of less focus on the gluteus maximus and more with auxiliary glute muscles).  We ended standing with a fun little choreography that she teaches her beginner students and stretching to cool down.  While I had a few balance issues that were pretty easily corrected with a wider stance, my pain level was pretty well under control with the medication (sometimes medication means I'm less mindful of my body's limits and I'll push too far because it doesn't hurt "too badly").

So far, I think the Projekt is a success, although it has caveats.  The real test will be to see how well I can perform, but I'll find that out at the end of the month when I dance Arabian Spices with two of the instructors at Twisted Dance Studios for the 10th anniversary of Sahira's Arabian Spices choreography.  I still don't know if I'm going to have to learn two versions of the choreography depending on my balance issues that day (one that is with the crutch, one without), but I have fabulous people that are supporting me through this!


Tuesday, July 16, 2013

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.