Thursday, October 31, 2013

Not in polite society...but I'm going to talk about it

There is a part of surgery recovery that I never talked about because it's just not something that "good" people talk about in polite society.  It refers to something that some body scholars call "leaky bodies"....and I'm going to talk about my own "leaky body."  I'm also going to tie this with a Crowdtap sample that I received from Cottonelle.

I hadn't seriously considered how a mundane activity like using the bathroom would change.  I read forums on Spine-Health and read about gadgets for extending a person's reach with toilet paper...but it wasn't until the day after surgery, until the nurse took out the catheter, that the "no bending or twisting" rule really connected to the toilet.

As a fat dwarf that had just had spine surgery, there is no way to clean up without bending or twisting...without either mechanical or human help.  It's also absolutely exhausting, complicated by the side effects of anesthesia plus pain medications plus difficulty in physically moving (did you know that physical activity helps keep your digestion going smoothly?  It does...especially with bending and twisting the torso).  Once the occupational therapist armed me with a long set of tongs that I could hold a wad of toilet paper, life got a little better.  Once I figured out how much flushable wet wipes could help, life was better.

Some of the folks in the Spine-Health forum suggested wet wipes for washing their body until the surgeon cleared them for showering, but I quickly realized that flushable wipes would help my poor recovering body feel clean more quickly.  The also worked better with the bathroom tongs as one wipe wrapped around the tongs just enough to be secure yet come off easily without touching it.

When I had the opportunity to do a Sample and Share for Cottonelle's flushable cleansing cloths, I jumped at it because of how much better my recovery was because of a simple product.  It helped that I could get an "adaptive aid" from any store that sold toilet paper, and the fact that this product is being marketed to the normative leaky body (because we all create bodily waste).  It feels like an attempt at universal design for the toilet.

In short, they've made a product that really made my recovery experience easier.  Good job!

Friday, October 25, 2013

Cyborg Dance Projekt: Right Left Right

Dance costume selfie with a troupemate's bra
Photo description: Overhead yellowish lighting with yellow walls and a brown doorframe in the background.  In the foreground is a fat pale woman with red hair pulled back, green plastic glasses, wearing a teal v-neck choli and a red velvet bellydance bra with cowrie shells around the bustline.  The combination of a decorated bra over a choli is typical of costuming in American Tribal Style® bellydance.

I'm going to stop numbering the Projekt weeks since I've pretty much cleared the three month mark (especially because my school/work load has been keeping me way too busy to blog consistently).  Honestly, I never thought I would get this far, or have it go this well.  I do have to admit that even though it's going well, it could be argued that 1) dancing is still causing nerve problems so I shouldn't be doing this, and 2) dancing wipes me out in ways that force me to continue using various adaptive aids (I don't generally dance with the crutch, but I use it all of the time outside the house unless I'm using my wheelchair...I still can't walk more than a block without issues).  Call it stubbornness, but I'm going to keep dancing as much as I can!

That stubbornness has paid off.  A couple Sundays ago as I went to the studio to do my work-study (that's how I can afford to dance with my medical bills), I was invited to join Helix, the studio's ATS® student troupe.  I was so happy to be invited for a bunch of reasons.  The first was that I really wanted the sense of community and siblinghood that being in a troupe can give.  As an introvert, I sometimes have internal freakouts about whether or not people actually like my presence or if I'm being intrusive when I try to be social.  The second was that since I've been dancing for about ten years (granted, not as much when my spine got really bad...but dance was still in my heart and soul) and had been paid and asked to perform for shows, I felt uncomfortable with being in a student troupe for cabaret or fusion bellydance....but with the unique group improv format of ATS® and my relative inexperience in the style (one summer in San Francisco with FatChanceBellyDance plus another trip plus dabbling) made the "student" status a perfectly fine fit.

Hm, I realize that might sound bad or like I'm creating some sort of hierarchy of shimmies or something.  It's just that I've taught and been paid to dance, and the teachers & more experienced dancers at the studio that dance with the student troupes are generally considered "guest artists."  My old troupe treated me really poorly because of my semi-pro dance experience, so I feel like I have to try to assert my worth as someone that's been doing this and doing it well for a decade (introvert problems perhaps?).  I would love to dance whenever and wherever I can, with whomever wants to dance with me because in the end, I love dancing WITH people versus being a soloist.

Anyhow, paranoid introvert rambling aside, my first performance is tomorrow!  I do have to work to get a few pieces of costuming together.  This style usually involves pantaloons, a big poufy skirt (10-25 yard bottom hem) over that, belts or scarves over that for the lower body, with a choli as a base on the upper body with a decorated bra over the choli (see self-photo of the choli with a decorated bra), plus makeup and a "hair garden" with fake flowers.  I already had a couple pairs of pantaloons, a couple cholis, and skirts.  I'm borrowing a decorated bra from a troupemate as I don't have time to decorate my own right now.  I need to find my pretty shawls that are hiding in the house along with the jewelry and hair flowers that I've collected over the years.

I'm excited but a little nervous.  My balance isn't getting much better, so I'm a little worried about falling on stage...but I think my troupemates understand my limitations and are just happy that we get to dance together. *grin*  If anyone takes photos, I'll post them for you all to see!

Wednesday, October 16, 2013

Nine Month Cyborg Birthday

My during-op hardware x-rays
Photo description: the photo on the right is an x-ray with two circular places.  The top one shows the back view of several vertebra, two of which have screws and rods connecting them together.  The bottom one is a side view where the length of the screws are more visible.

Today is October's been nine months since I had two of my vertebra fused.  It's been a hell of a ride, and it's not done.  The true baseline impact of this surgery won't be really known until the 1-1.5 year mark.

There are some things that are going really well.  I have dance back in my life, even though I have to modify the hell out of it sometimes (I cannot drive any movements with my glutes, which is pretty darn difficult).  My nerve pain is down thanks to an upped dose of nortriptyline (an antidepressant that calms nerve pain for some people), so I don't get muscle spasms nearly as often and I don't feel like I'm being stabbed in the legs constantly.

I'm frustrated that I still can't walk for more than ten minutes....even though I can sometimes dance for 2 hours.  I have a feeling that this is related to the glute issue that causes nerve pain, as my personal post-op dance posture requires a pretty intense tuck in my pelvis and it's extremely hard for me to walk like that.  I'm not frustrated by my need to sometimes use a wheelchair though....the freedom that it has given me on bad days and the pain it has saved me on not-so-bad days has been a relief.  It's also given me a chance to be speedy and playful, makes me feel strong when my muscles ache from pushing a good distance (like at Gen Con or at the Mall of America).  The upright dancer but sometimes wheeler status feels weird and gets me some odd looks sometimes, but it's a balancing game that I play to keep my passion moving.

Also, I'm frustrated by my continued need for narcotic pain medication.  Really really frustrated.  These medications make it hard for me to function as a scholar and make me continually question my career path.  To be semi-functional in life (to dance, to work, to game, to be a student), requires me to take them....and to continually fight breakthrough pain and the brain fog that comes with them.  Sometimes I wonder if the benefit of taking them is worth it, but I really feel like I have no option.  The "option" would be to quit everything and try to get in the Social Security Disability system....but I would rather avoid the enforced poverty, the constant fear of paying my bills, and wondering if I can ever have a life worth living with the incredibly low income cap.

I really have to look back at the past year to realize that I'm doing better, even though I realize that I'm really at the same point a year and a half ago, wondering if I should have surgery.  Even though I'm better, my spine feels like a ticking time bomb right now, just waiting for the next joint up to fail.  I'm just trying to do what I can with what I have at this point....and remind myself that at least I have dance back in my life because of the fusion!

Saturday, October 5, 2013

100th post!

Giant duckie in honor of the 100th blog post milestone!  Why?  Just because I'm silly!
Photo description: an outdoor water scene, probably a harbor with a big city in the background. In the foreground is a giant inflatable yellow duckie, like a rubber duck that one would put in a bathtub.  It is surrounded by orange and yellow round buoys.

I know the last post was a bit of a rant (and freakishly timely with the US government shutdown over the "healthcare" situation int his country), so I want to celebrate this blog's 100 post landmark with something silly....a huge inflatable rubber ducky....just because I love duckies and collect them. (I don't have the photo citation, but if someone finds that, let me know and I'll post it).

Thanks for reading and following!

Friday, October 4, 2013

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.

Wednesday, October 2, 2013

Back in physical therapy

My foot, my dumbbell
Photo description: brown carpet in the background, a pale short and wide foot with green nailpolish stepping on a grey dumbbell marked with "15" for its weight.

Because my new pain management doctor doesn't believe me that I'm taking three or more dance classes a week (and therefore meeting the current recommendations for physical activity according to the US government), I consented to going back to physical therapy, with the caveat that it had to be aquatic PT (I miss lap swimming, and my last pool adventure over the summer was a minor disaster pain-wise as the water pressure alone hurt).  Despite knowing he's being a fatphobic jerk, he's the first doctor that has taken me seriously about my desire to be on something other than opioids but realizing that opioids are the meds that are getting me through life right now.

A couple weeks ago, I had my PT evaluation with the new clinic (my old one doesn't have pool access).  I decided to wear my department t-shirt with the university logo and "KINESIOLOGY" in large letters, along with comfy drawstring shorts and my trusty sneakers.  PT evaluations almost always involve being touched in various ways to see how joints move (or don't move), to see what hurts with what kind of pressure, to test strengths, weaknesses, or imbalances, and sometimes end with heat, ice, or some other soothing modality (because if you're in need of PT, these evaluations almost always cause pain or other problems).

Since I've been through physical therapy quite a few times in my life (three times just for my spine fracture & vertebra slip), I have certain requirements that need to be met to deal with a PT.  First of all, my weight (if mentioned at all) needs to be addressed in a weight-neutral manner.  I have a history of disordered eating.  Yes, fatness is correlated with various biomechanical issues, but so is being tall, so is bone structure, so is age.  For the vast majority of people, weight is not modifiable.  The only thing dieting has ever done to me is make me unhealthy and bigger than had I just left my body alone.  Besides, people of all sizes get injured and just treat me like a person with an injury or disability!

My second requirement is an acknowledgement of my desire to be active.  This is why I tend to go to appointments in my department's tshirt, a shirt from a triathlon or 5k, or a dance related shirt (like one of my Bellydance Superstars show shirts).  I want to be clear....physical activity isn't something that magically makes me a good fattie or some sort of supercrip.  I just have found that if I don't show proof of my prior activity status, I don't get treated seriously (I had a PT not believe that I was active at one point, despite my involvement in a dance troupe and dancing from 15-20 hours a week on top of my full time job).

Lastly, compassion.  The combination of my love of being in motion and being a people-pleasing introvert means I will push to far at least once...and I will struggle to the point of tears and panic to tell the PT or PTA that I've gone too far.  There are a lot of things that my body can do that I shouldn't do (like impinging my sciatic nerve), but I still do them in the attempt at getting praise and being treated as a "treatment compliant patient."  This is awful, both for me and the PT.  I'm slowly getting better at saying stop, but if I don't have therapist-client rapport yet....well, it's going to take a lot to actually be able to say it.  This is something that comes from trust (and works best when I have only a one or two person "team"....I only roleplay an extrovert!).

The therapy pool at the PT clinic
Photo description: shown at an angle, a small indoor pool, approximately ten feet by 10 feet with stairs and handrail leading in to the approximately four foot deep green-tinged water.  There is a mirror on the upper right side of the picture and wooden doors on the upper left side.  The tile around the pool is grey, the pool itself has beige, blue, and coral tiles in a geometric pattern.  A wooden bench is barely shown in the lower right side of the photo.

I agreed to biweekly aquatic physical therapy at the new clinic.  I gave it a good solid couple of weeks.  I really tried....but just being in the water hurt.  Walking hurt worse as the 98 degree Fahrenheit water loosened up my already hypermobile ligaments and tendons and ended up pinching nerves.  I wasn't even getting any benefit from the water exercise because I was either too strong, too flexible, or in too much pain.

Thankfully, this physical therapist is being awesome (not only does she meet my PT requirements that I put at the beginning of this post, but she's friendly and funny).  We're doing "land-based" PT including E-stim (like industrial TENS) and dry needling (like a cousin to acupuncture, but different in that it tries to derail nerve issues in trigger points).  We'll see what happens.  I really don't have the money to be doing the human guinea pig thing ($20 biweekly copays add up, especially with my other medical bills), but I would really like to be more functional in my life.  I'm still dubious as the increased pain is draining my energy, making school and work extremely difficult.  I guess what matters is that I'm trying, right?

Tuesday, October 1, 2013

Cyborg Dance Projekt: Un/lucky 13

Photo description: extreme close-up of pale skin with a tattoo of a green shamrock and the number 13 underneath. The skin is shiny from new tattoo ointment.

Although I'm not particularly superstitious, thirteen is my lucky number.  I love Friday the 13th as some really wonderful things have happened to me on that day.  So week 13 is getting its own CDP post.

Ever since the workshop with Issam Houshan, I've been practicing my doumbek almost daily, even if I can only spare 10-15 minutes to do it (enough time to keep the muscle memory of where my hands need to be for doum, tek, and ka....not really enough to get significantly better at it, but my time is limited with work, class, physical therapy, etc).  It's also been a chance to really learn various rhythms and their names so I know the difference between a baladi, malfouf, saiidi, ayub, and others.

Dance-wise, it's been rough.  I'm doing a round of aquatic physical therapy at the suggestion of my pain management doctor (see my post on FFF entitled "Doctors don't say that...unless you're fat" for more information on why I consented).  My dance schedule was Sunday, Tuesday, and Wednesday evenings with PT on Monday and Wednesday mornings.  It's also mashed up with a higher dose of nortriptyline (a medication that helps with nerve pain) and getting back on my growth hormone all honesty, it could be a horrific mashup of everything at once causing a rough week.  In short, my pain level has been pretty hellacious, combined with leg weakness, balance problems, and proprioception issues.

I've been making it to a class every other Sunday (either intermediate cab or ATS level 3), every Tuesday ATS level 2, and either intermediate drills/layering or intermediate tribaret, but I use every spare spoon I have in my arsenal to get through just one class.  I sometimes dance with my TENS unit on...which isn't ideal because sweat + electrodes = bad zappy. I'm not sure where my ability to do 2-3 classes back-to-back went (from the beginning of the Projekt), but I feel like I found my dance shot clock.  I feel like my body is trying to tell me that dancing is not something I will be able to keep up with long term....but I don't know what "long term" really means.

With this in mind, I'm going to dance my heart out in a blaze of glory.  I'm going to try to perform as often as I can, to take classes with as many instructors as I can, and live it up.  I'm going to try to pinch pennies and fund raise to go to the Fat Chance Belly Dance American Tribal Style General Skills workshop in St. Louis, Missouri in August 2014. If you want to help me get there, I have a Paypal donation button at the bottom of this post and am considering a GoFundMe project to make it happen.

I'm going to keep up with all my pain management modalities (ice, TENS, medication, physical therapy) and try to keep my hopes up.