Blog moved!

I'm a bad blogger...I decided to make the move to Wordpress with the Adventures of a Part Time Wheeler blog.  There are things I like about both blogging platforms, and dislike about both platforms, but it is allowing me to organize my posts in a way that works better for my work/school/pain-addled brain right now.  I'm hoping that I will be able to afford my own URL as well in the fall (likely www.parttimewheeler.com, or a similar derivation).  It's still under construction, so don't mind the dusty bits.

Feel free to head over there and take a look.  If you like what I'm writing, doing, accomplishing, I would love donations to my adaptive aid fund through GoFundMe or directly through Paypal.  If you like how I write and want to hire me for editing work, check out the details here to get started (rates negotiable!  Help a gimpy grad student pay her medical bills!).

Apologies

My crutch plus a rainbow rose

I just wanted to say that I apologize for the huge gaps in this blog.  I have ten posts, all unfinished, in the hopper but I can't get the right combination of time and energy to finish them (like the Gen Con post, or the post about going to National Women's Studies in November, or thanksgiving).  I've been incredibly busy and would love to tell you folks how it's all going....but I just am struggling right now!

With my GP (and not much help from my pain management doctor, sadly), we're trying to figure out why my energy level has tanked, why I'm having trouble with my short term memory and reading comprehension (which is a particularly hellish symptom in grad school), and why I still am sleeping like garbage despite how exhausted I am all the time (improperly treated pain plus untreated narcolepsy is my current guess).  I had a medial branch block series of injections yesterday that is supposed to help narrow down the nerve problems I'm having post-spinal fusion (we'll see what happens with that....I'll blog about that experience once I clear finals + my wedding).  On top of all that (plus the financial mess that makes because of the American Medical Industrial Complex).

Hopefully I'll clean up a post every couple days now that the semester is wrapping up...although I am still working on incomplete coursework from last year (because of surgery and not being able to take a leave of absence due to financial reasons).  Thanks for your patience!

Photo description: A bronze and black forearm crutch laying against a light and medium wooden desk.  A rose with rainbow petals is propped on the crutch.

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 :-)

Alternative medicine and me

It's starting to look a lot like Cripmas...

This is one of the several posts that has been sitting unfinished in my blog queue.  I've tried to clean it up to make it more current, so I apologize if there are any weird timing-based issues with the writing that I missed.

One thing that comes up a lot when talking openly about one's illness or disability is the question "have you tried [insert therapy, medicine, supplement, herb, exercise]."  It's a question that I know many times comes from a place of love and sincere desire to help.  I've written a little about it before on this blog, and other people have discussed this more succinctly than I have (for instance, Toni Morris from Psychology Today).

I used to have a pain management physician's assistant that was into complementary and alternative medicine, so sometimes my prescription would include the names of various supplements to try.  Magnesium, GABA, valerian root, melatonin, fish oil, l-glutamine, l-carnitine, B-complex....some on an empty stomach, some only with food, some at mealtimes, some before bed.  Every time I try something new, it involves a financial commitment along with a commitment to making a constant rattling noise as I move around my day with a horde of pills, all in the name of hurting less and functioning more "normally" in society.

I also tried several things in a book called From Fatigued to Fantastic, which is geared towards folks with chronic fatigue and fibromyalgia.  My pituitary birth defect has a lot of fibromyalgia-esque symptoms (and many folks with hypopit get diagnosed with both disorders, although a rheumatologist told me that fibro was a diagnosis of exclusion, so I couldn't have both).  I didn't try everything in there, partially because of finances, and partially because of the time commitment many of those suggestions would involve.  A lot of the author's suggestions overlapped with the supplements my pain management PA was suggesting, so I tried with the desperate hope of avoiding the knife.

None of this helped me bypass surgery.  I don't know if any of it really actually helped, partially because I tried too many things at once.  I've learned that some of these things do make a quality of life difference (B-vitamins when my energy is lagging, melatonin, magnesium, and valerian root for making me sleep better).  Some of these supplements are hard to gauge effectiveness on (like CoQ10 for brain function and memory...memory problems being a huge problem for many folks with chronic pain, and something that makes my scholarly work incredibly difficult).

This is my non-food breakfast of champions

Since I made a sizeable order at Puritan's Pride for some of these experiments, I keep taking a lot of them.  I did enough research that I feel confident that I'm not doing any harm to my body, and most of these things are vitamins and minerals (the bottom picture shows several fish oil capsules, vitamin D, several magnesium pills, a B-complex, & two different amino acids).  I'll see what happens to my quality of life when the supplements run out.  I just need to be content in knowing that I at least tried.

It's all part of my "keep on keeping on" plan....just keep trying.

Two weeks old

A few things that make recovery more tolerable

Two weeks ago I had my spinal fusion surgery.  It's been surreal.  Sometimes it feels like more time has passed, and sometimes it feels like I was just released from the hospital a few days ago.  I've realized that those feelings of a weird temporal nature are pretty closely tied to how much pain I'm in, or how well I'm getting around, or how much I'm sleeping (I still sleep a lot, but I've not managed to sleep more than 3.5 hours in one stretch yet).

I am slowly getting better.  I haven't had problems with my left leg since the surgery....not a surprise as the surgeon said that nerve was absolutely crushed.  I do have pain sometimes where that nerve starts, but it's sporadic instead of constant.  I figure that's probably a sign of it healing.  I am having some issues with my right leg with spasms and numbness, but pretty minor compared to everything else.

Most of my pain is in the lumbar area of my spine or in my left glute, and it's been interesting experiencing the different kinds of sensations.  Bone pain versus nerve pain, numbness at the incision site, extreme itching on my back, stiffness in my legs, a "stuck" feeling in my low back.  The part that I'm finding the most frustrating is that I'm still relying on pain medication to get me where I'm at.  I was really hoping that I would be tapering to a lower dose by now. 

Although the pain is still barely controlled, I try to stay positive and think about the things I am able to do.  I usually walk around my home without the walker.  I can get up and down my front stairs without a huge increase in pain (although it will wear me out).  I can stand long enough to make simple meals.  I can sit in my desk chair to type blogs.  I managed to go to class on Monday for 2.5 hours (which felt good at the time but ended up being way too much as I spent most of yesterday in bed, in pain, and cranky).  I'm probably going to part of my class tonight, but tell the professor that I won't be able to be there for the entire 3 hours (I'm aiming for 1.5).

There are a few things that have really helped me get to this point in my surgery recovery.  Several of them are shown in the photo I have on this blog post, and several of them are suggestions from the Spine-Health.com surgery forums.  First of all, the satin sheets have made getting in and out of bed exponentially easier (particularly with the restriction of "no bending, twisting, or lifting").  They also feel delightful even when I was restricted from taking a shower!

The bathrobe and microfleece blanket are just snuggly, although the bathrobe is fantastic post-shower to help air dry one's body (terry is recommended, but was out of my budget).  Showering, even with the assistance of a shower chair and changing the shower head to a detachable one with a hose, is still a time consuming, pain-filled, and exhausting activity.  Having a bathrobe that can help you air dry helps to keep one from breaking the "no twisting, no bending" rule by towel drying.

Slipper socks with grips on the bottom were part of my usual at home lounge wear before surgery, but have become more important while I recover.  I have hardwood floors in my home, and slipping would be very very bad.  The grips also help get traction for changing position in bed with the satin sheets.

As for the other big thing that has helped (other than occupational therapy gadgets like the shower chair and grabber) is my iPad.  It's a refurbished first generation model that I bought last year because of my worsening spine issues, but it has become a huge help.  I have a medication reminder app, I have Netflix and Amazon Prime to entertain myself, I have audio books for those times where the medication makes it hard to physically read, I have DropBox for the pdf's I need to keep up with my schoolwork.

******

I see the surgeon for my first follow-up appointment on Friday.  I fully expect to be scolded for going to class without asking him first, but he knows I'm a driven individual.  There is a part of me that wishes I could have taken a leave of absence from my PhD program to focus on healing, but I think having my classes to work on (albeit independently so far) have helped keep me focused....and have kept me from trying to push too much physically (which I'm having trouble with anyhow!).

Hopefully the next two weeks bring more positive changes!

(Not quite) the end of the semester

Serenity & Bela, my fur kids

It's been a heck of a couple weeks, which is why I haven't posted for a while (believe me, I have six unfinished blog posts sitting in BlogSpot!).  Bela, my cat that was seriously ill, spent a week in the veterinary ICU but has been back home since the Monday after Thanksgiving.  We're still fundraising to help with his veterinary bill (as it ate my surgery & endocrinology savings), but it looks like the little guy is going to pull through just fine.

Right before his illness, I found out that I need to go through with the spinal fusion surgery as I've exhausted all my options.  In the meantime, I've been doing physical therapy to try to get as strong as possible (although there's a huge difference between what I can physically do because of muscle strength & flexibility and what I ought to do because of pain & nerve ramifications).  I'm pushing to get the surgery done over winter break to hopefully not derail my doctoral program.  It's scary, and I don't even know what kind of fight I'm going to have with my insurance company because the orthopedic clinic won't get preauthorization before I have a pre-op physical (but the general practice clinic didn't want to schedule a pre-op before the surgery was scheduled *facepalm*).  I also had another unsuccessful appointment with a pain management medical professional, with the doctor interpreting "I'm doing so poorly that I'm taking incompletes in my classes" as "I'm working on my doctorate and must be doing FANTASTIC."  So, I'm left with the same pain management regime that's not working and trying to get surgery done as soon as possible.

In the midst of all the medical & veterinary issues, I've been trying to keep on with school.  It's been hard as I've been in too much pain to be able to drive to my research site (a 40 minute drive), so I'm taking an incomplete in that class.  My other class has been difficult, but I'm one 5-page paper away from being done with it.  It's been extremely difficult to think through the combined haze of pain and medication, and thinking from a sociological lens is even more difficult.  I know I'm not doing my best work, but right now I'm just hoping for sufficiently finished.

I've been trying to give myself some room to heal while still getting through my work, but I have to be careful because my job and health insurance are dependent on my student status....if I don't have the right percentage of completed credits, everything could come crashing down on me.  I'm hoping that getting my masters at the same institution as my doctorate may help, especially since I'm pulling nine credits from last year into my PhD plan of study, but only time will tell.

Thank you all for your support during this extremely difficult time in my life.  I'll try to get some unfinished posts put up in the next couple weeks as I work to get surgery scheduled and my classes finished up!

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.

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.

I'm an exercise junkie

It's probably not a surprise that I'm an exercise junkie by just looking at some of the posts on my blog.  Even some of the non-exercise related posts either have something to do with my PhD (kinesiology...the study of movement) or talk about how my lifestyle relates to my movement-based hobbies.  I've been a bit frustrated with what my body is letting me do lately (upper body strength training), what it will grudgingly do (swimming laps), and what it will not allow (walking for any real distance, Crossfit, mixed martial arts, belly dance).

After wheeling the 5k, I know that I want to get back into endurance sports as it looks like the adaptive versions will be doable.  The problem is really the cost.  Adaptive sports equipment is really expensive, for example, this racing wheelchair from Top End (the company that made my rigid chair) retails for easily over $3,000 USD.  How can most disabled wannabe athletes supposed to afford this?  There are grants from the Challenged Athletes Foundation (a great organization that helps out a lot of folks be able to be active & have fun), but I'm worried that the position required in a racing chair will cause spine issues...and that's a huge financial risk for something that might or might not work for me.

There's also the issue with fit.  I'm not a paraplegic, so my legs are rounder than they would be if I didn't have use of them.  This limits the style of racing chair I can use, and it may mean that I'm too round for the racing frames that exist.  Another concern is that if my body shape changes due to training and racing, I may no longer fit properly in this very expensive piece of equipment, and ill-fitting sports equipment (whether it's a bicycle, running shoes, hockey pads, ski boots, or a wheelchair) can cause either biomechanical issues or increase risk of injury.  What happens if this very expensive piece of equipment no longer works for me?

I'm also a little worried about applying for a grant through CAF or a similar organization.  I think part of my emotional mind clings to the hope that somehow my deteriorating spine will somehow fix itself.  Or that maybe I'm not disabled enough.  Or that maybe the organization will judge me based on my body size and consider me a poor candidate for funding.  I'm not saying that any of these thoughts are rational, but they're still valid.  Fatphobia exists...and fatphobia can live insidiously with ableism when fat folks use adaptive equipment.  We're seen as lazy, we're seen as causing our disability by being fat (and even if we did, people should keep their mind on their own underpants, thank you very much).

So, I'm thinking about ways I can raise money to fund this racing chair, or maybe a way to see if I can get professionally fitted and see what my options are.  We'll see what the future holds on this front...

Buying medical equipment on Ebay

The wheelchair I'm bidding on

I started writing this post while the auction was still active, but decided to post it post-auction.  Originally I was leery to post it while it was active.  You might be asking why.  Because it's hard to find a chair that fits my booty, looks sporty, will be able to withstand sporty things, possibly be usable for dance (assuming I can find a teacher or professor willing to take the mixed-ability dance plunge), and is in my budget.

Here's the thing.  Why on earth would someone need to look at buying medical equipment on Ebay?  I crunched the numbers, and here's why I'm taking the risk.  Assuming that my insurance will even pay the 80% that the policy book says they will, I have to jump through a number of hoops to get them to pay it.  I have the prescription in hand, so that's the first major step.  Next was to figure out which supplier of "durable medical equipment" (or DME) were on my insurer's list of providers.  The next one, according to the DME supplier, is to make an appointment with a physical therapist for a proper fitting, an appointment that a rep from the DME supplier needs to be at.  My insurer doesn't cover physical therapy, and I failed out of PT a long time ago, so I don't have a current relationship with a PT that I know and trust (which is something I find to be a big deal).

So from here, I'm already paying a good chunk of money just to have someone day "yes, I agree she needs a wheelchair" and to have them measure my butt (I know, there's more to it than that).  Next adventure really involves a dance between the DME supplier, my clinic, and the insurer...a dance that normally takes two or more months, and probably some rejections and appeals.  Assuming that they say yes, I still have a deductible to pay, and then my 20%.  When all is said and done, that's a lot of time and money being bounced around while I have a lot of people that don't know me validate my status as a disabled person.  A lot of people that may decide that since I'm fat and disabled may just say "lose weight and your nerve problems will magically disappear" (statistically untrue, by the way).

BTW, for a really detailed list of the steps it takes to get a chair, check out UsersFirst Mobility Map.  It's an amazing resource.  It also demonstrates how complicated this process is.

Me on my bike on the MS 150, 2007 & pre-injury

So I've been looking on Ebay for wheels, and finally found a chair that should fit.  If it doesn't, I'll "rEbay" it (a term I coined last night while talking to my SO.  It's a risk, and a decently expensive one.  This char costs as much as my beloved triathlon bike (that I can't bring myself to sell because of the good memories we've had...see the look of determination in the photo on the right?).  I suppose being able to compare the price of the chair, which is made by a company that produces sports chairs, to the price of a fancy bike is allowing me to not balk at the cost as much.  At least that's my excuse at the moment.

And now?  That chair above has been paid for and will hopefully be shipped soon.  I've never made a Paypal transaction of that size before, and I'm thankful that I have money in my savings account to make this happen, especially on a day where I'm having trouble even walking around my office because of pain.  Here's hoping that it works and that my measurements are good :-)

Adventures in insurance

I got up early before work to call both my insurance company (who never emailed me back a few days ago) and to call companies that sell wheelchairs.  Found a company that is listed on my insurance company's list, and now I have to wait for their customer service person to call me back with the exact steps I need to follow to see if my university's insurance company might pay for it.  Good grief.  It's not like wheelchairs are an awesome fashion statement...I just want to be able to get around campus, go grocery shopping, and not have to drive to campus.  Heck, there are some days where I can barely get from the handicap parking to my office without my spine feeling like it was gnawed on by a baby tiger.

I am literally about ready to just buy a chair off Ebay.  Since I've used crummy hospital-like chairs ("hospital clunkers" as AskAWheeler puts it) , I know approximately what size I would need.  The problem is that there are tons and tons of options out there, and things that other wheelchair users needs may be things I either don't need or don't want as a partially ambulatory person.  For instance, a movable footplate would allow me to put it down when my feet are being useless or put it up when my feet are cooperating some so I can use them to scoot around with a coffee in my hand.

Now that I know what my deductible is, I may be better off getting it myself, even with possible fit problems.  I found a Top End Crossfire (Top End is a sports chair company, although this model is a general purpose chair) on Ebay for a good deal less and some options that drive the MSRP up significantly.  Seat is the right size, the back isn't too high (the higher the back, the harder it can be to push if you're little like me), and the footplate is adjustable height in a range that my legs actually hit.  The plate isn't removable though, and it's lacking the clothing guards that I'd prefer to keep my shirts from getting stuck in the wheels.

So now I wait for United Seating and Mobility to call me back to see what sort of insurance dance might be ahead of me.  I may need to have a physical therapy seating & mobility evaluation, which will likely cost a good chunk of money out of pocket.  We'll see what happens...