All posts by Ouyang Dan

About Ouyang Dan

is an extremely proggy-liberal, formerly single mommy, Native American, invisibly disabled, U.S. Navy Veteran, social justice activist and aspiring freelance writer currently living in South Korea on Uncle Sam's dime. She has a super human tolerance for caffeine and chocolate and believes she should use those powers for good. She said should. She is not a concise person, and sometimes comes on a little aggressively in comments. Sometimes her right arm still twitches when military brass walks past her, but she would rather be reading YA Lit or pwning n00bs. She can be found being cliche about music, overthinking pop culture, and grumbling about whatever else suits her fancy at her personal website, random babble.... She also writes about military issues for Change.org's Women's Rights blog. If you have something interesting to say email her at ouyangdan [at] disabledfeminists [dot] com. Lawyers in Italy looking to hold lottery winnings in her bank account may wait longer for reply.

Why ‘What People Think’ Matters

introspective, life changes, military, shaming, social attitudes, ,

Permanent Limited Duty is an option that a service member has to being fully medically discharged.  It allows the member to stay active duty on a strict schedule and with very strict limitations of duty.  It allows them to fulfill their contract obligation as opposed to being released from it early.  There are specific criteria that must be fulfilled, including proving a need to be allowed to placed on PERMLIMDU Status.  For me, things like having a minor child who needed insurance and being unmarried and without another source of income would have been sufficient for me to prove a need for PERMLIMDU.  There are other factors involved, including approval from your CO and CoC.

In the year leading up to my Medical Board and subsequent discharge I was in so much pain and so tired all the damn time and overall not coping well with what was going on with my lack of medical care.  On top of all of my work and training and single motherhood was Physical Training (PT), which was increasing because as my body was struggling my readiness standards were falling due to my inability to push through the pain.  As I was forced to ease up I gained a little weight which meant I had to increase my PT.  Increased PT increased my pain, which increased my problems overall, and somewhere along the line something broke completely inside me.  It was a vicious circle of some of the most cruel means of my life.  I needed more PT, but increasing PT caused  more injury that meant I had to decrease the type, intensity and amount of PT my doctors would let me do.  That decrease caused weight gain…you can see where this is going…

Long story short, I had to be put on a day shift and have my hours reduced to half days because I was not doing so well.  While the rest of my friends and peers were moving on to the things that we had now spent over three years training for, things that were going to expand their careers, the actual finish line of all we had worked for, and I was riding a desk.  To be fair, it was a job I really grew to love and something I could see myself doing again.  My direct supervisor was awesome, and our division boss was incredible.  To date he is the most wonderful Senior Enlisted person I have ever had the honor of working for who also happened to be very supportive of my medical process.  But it wasn’t what I had trained for, and the sudden disappearance of all of my friends made that even more heavy for me.  I was devastated that I was missing that.  I felt, once again, like a failure, like my body was a failure.  The career I had worked for was crashing down around me and it seemed I had no one to support me through it.

When you are going through a serious medical Thing (for lack of a better…whatever) you start to notice that people tend to disappear.  I don’t know if it is too hard for them to handle or if they don’t give a fuck or what…but you run out of people who you can call to take you to a doctor’s appointment because whatever medication you are on makes you so dizzy you really shouldn’t drive, or people who you can call to watch your children while you go to physio.  You can’t get someone to hold your hand during an X-ray, let alone get them out for coffee.  While I adamantly maintain that my medical problems and disability were not brought on by depression as some would have you believe, being utterly alone during this time cause me an at the time crushing depression.  Sometimes I still feel it. I literally did not hear from my former friends.  Sometimes if you run into people you used to have energy to club or shop with they bring it up as a polite thing to say, kind of like when people say “How ya doin’?” and never really expect you to answer.  So when they would say “How’s…all your…stuff?” I would tell them, “Oh, it’s a big boring mess, how’re you doing?”.  If I actually did talk about it I would notice that they tended to not really want to talk to me again (even though most of them had to eventually because of my new job).

I still had to take my yearly training.  During my yearly training our annual Evaluations came out.  I was pleasantly surprised to receive a relatively high mark on mine.  My boss apparently thought that I was doing a lot in the hours I was allowed to be there during the day.  I worked as hard as I could with what I had to give, and someone noticed.  I was beginning to feel as though maybe I could still do something productive in the Navy, as if the thoughts of PERMLIMDU Status wouldn’t be the end of the World as I knew it.  I began to seriously consider it.  I was in my annual training with the sister of a friend whom I still had occasional contact with, and who was unhappy with her own eval.  As much as I sympathized with her situation, I understood that due to my circumstances our peer groups were different, and my evaluation was not competitive with hers.  I made it a point to not discuss my eval with her or even bring it up.  But when she asked me point blank about mine, my refusal to answer made her assume that mine was better, and this caused a riff between us that I had hoped to avoid. I felt awful, because she was a really great person whom I had actually though I had made friends with. It is such a tricky thing to make new friends when you are going through so much…

It was very difficult.  Nothing I could say was good enough.  It wasn’t fair, she said.  It was wrong, she said.  I was on the same fitness enhancement, she said, and I didn’t even work shift work, she said.  I only got that mark because I sucked up to my boss, she said, and because I “lucked” into a job above my pay grade, she said.  All she could see were the positive outcomes of what was, for me, a really shitty situation.  The one good thing I had going for me was that someone had need of a body to fill a position when my world fell apart, and that it could have been a semi-permanent thing.

That night I received a phone call from my friend, inviting me to meet her for coffee…something that we hadn’t done in I don’t know how long.  She certainly hadn’t had time for socializing in a long time, it seemed, and I was pleasantly surprised.  We met at the Starbucks near my house, another nicety, so I didn’t have to go far.  She treated and we split a big chocolate brownie, because we shared that superhuman tolerance I brag about.  We had polite chit chat and I really felt great getting to talk to her.

Until she brought up my eval.

She brought me there to defend her sister’s side of the whole thing — to tell me that she didn’t think it was fair that I would try to stay on in an office where I could get unfair evals when the rest of my peers were doing real jobs in the Navy.  I was so ashamed that I didn’t even think to argue on my own behalf.  To tell her that it would have been the best thing for me to do so.  That it would mean that I could still give my Kid insurance and have an income and finish my obligation.  That I would still have some connection to all the work I had put in.  But again, all anyone could see was how my situation was unfair to them (even though, in reality, it wasn’t, since my evaluations had no effect whatsoever, on theirs, in case I haven’t made that clear). No one else could see beyond how they felt, to what it meant for me and my family, to me and all the work I had done. Instead of a legacy of nothing finished, I could give something back. So, I lied. I said that I didn’t have that intention — I said I intended to quit and just go away.

But now I was just ashamed.

I was so embarrassed.  I put on my Brave Face and finished up the visit as well as I could.  I cried the whole way home.  I remember deciding that night that if I chose PERMLIMDU that people would all think that I was some big lazy slacker.  A Bad Cripple, even though some people would never see me as disabled at all, and why should they? I hadn’t even considered that label for myself yet. They would all see me as someone who was there to milk some system and gain some unearned privilege.  I had let someone who was supposed to be my friend shame me into giving up things that I needed for my life. So, when the choice came up with the Medical Board Liason and my Division Officer, I turned it down. Again, I lied. I said that it wasn’t something I thought I could do. It wasn’t what I joined the Navy to do, I said.

It is easy to say “who cares what people think” because we all want to assume that we don’t make decisions based on the feelings of others. But the guilt and shame we feel at the stares and hands of other people is hard to take, so much so that we will often expend our spoons to make the feelings go away — even if it is not to our own benefit.

One thing I should add: Through it all, I learned the value of the friends who come out of seemingly nowhere to support you, just when you least expect it, and the value of friends in Bloglandia. Never let anyone tell you that your blog world friends aren’t as good as Meat World friends. They are all appreciated, especially as the wounds of the lost friends heal. The Meat World friends who held on might be few and far between, but they have been a much needed comfort through the many tears.

No, Actually, “Eat a Sandwich” is Not “Feminist Activism”…

bodies, feminism, intersectionality, language, mental health, shaming, Uncategorized,

…and I’m going to tell you why.

Because the policing of women’s bodies, whether you are being cheeky, or saying it to a plastic doll, is not cool. It’s hurtful and not useful, and has no place in feminist discourse. Can we move past that point? Huh? That’s a pretty Kindy thing, IMNSFHO.

‘Kay.

Moving on.

*The rest of this post is going to use some harsh language that describes my experiences/anger/frustration with Anorexia and Bulimia. I am direct and vulgar and sometimes a little flippant with how I describe my past behavior, and that is how I survived it. This may be triggering to some people. I also swear. A lot.*

There is a point when you are struggling* with an eating disorder that you might find yourself thin. Perhaps painfully thin. Maybe dangerously thin. You know this. You are aware. You haven’t avoided solids for this long, or barfed up all of that dinner you were pretending to enjoy without realizing what this means to your body. You might have some misunderstandings about what your body is actually needing…but you pretty much know.

In fact, everyone knows. All anyone can fucking talk about is how good you look now that you are so skinny…but wait…you just passed so good and have moved into too skinny…(because there is never good enough…too fat or too thin you will never be in)

Seriously, girl, eat a damned burger.

Or a bacon sandwich.

Eat something.

Because, you know, it’s that easy.

In fact (shifting voices), the only thing that anyone said to me that wasn’t so fucking insulting that I didn’t want to scream was “I am not going to insult you by saying how much harm you are doing to yourself because you are a smart girl and I know you know, when you are ready, I’ll be here”.

I watched all the shockudrama’s that were meant to scare me because ZOMG my STOMACH could RUPTURE and I was DOING THIS to MYSELF!

*for shame*

I saw Tracy Gold and the mom from Family Ties and countless others on the after school specials during school and I fucking knew.

How could I not? I knew what the result was…that was the damned point.

And I knew I was sick.

I. Didn’t. Care.

And that was scarier than anything…that I felt helpless inside my own body to stop it.

Eat a fucking sandwich.

As if I wouldn’t just throw it back up.

As if that bottle of ipecac wasn’t in my glove box.

As if I wasn’t really good at tearing it into pieces to make you think I was actually eating it only to drop some and crumble some and throw the rest away…

No, I wasn’t embarrassed of letting you hear me pee…the water running was a cover for something else…

Eat a fucking sandwich.

Tumbling around inside my head…as if it never occurred to me to do.

As if I had the power to just eat that fucking sandwich.

The hurt and the denial and the lies…and shit yelling at me just didn’t help…

Because who the fuck carries sugar packets in their purse?

And do you know when that shit started?

When I was a teenager.

We shouldn’t infantilize teenagers by saying “b-b-but they don’t get that this message isn’t aimed at real people”.

Bullshit.

Teenagers are people…with feelings…

And if anyone can tell you about what it feels like to hurt because you sit outside the socially accepted norm of appearance, it is another teenager…

being told to just eat a sandwich isn’t that funny if you are dealing with body issues

and burning yourself with a curling iron because you don’t know what else to do…

Eat. A. Damn. Sandwich.

It’s not funny or witty or clever or great new empowering activism.

It’s awful.

It’s hurtful.

It’s waking up in your own bile.

And it is possibly terrifying the hell out of someone.

Unpack that one.

*I don’t like to use “struggle” any longer when discussing disability. My experience with EDs was a struggle. There is no other word in my vocabulary, which spans a few languages, to explain it. I struggled, fought, and am still not sure I have won this one.

Cast in Bronze

identity, military, Uncategorized,

Yeah, I know that this guy’s uniform is jacked up. I know you can’t wear your collar standing up like that no matter how cold it is, and that your pockets are decorative only. Were I doing an inspection, The Lone Sailor here would probably not pass. He would be called to re-inspect later.

But I marched past a replica of this statue every day for some of the longest weeks of my life. He was a proud symbol of everything we hoped to achieve, and everything that everyone before us had achieved. It was an image we had hoped to live up to. A symbol of what it meant to be a Sailor. To wear even the lowest uniform and to even be graced the swab the decks was to be a proud member of the United States Navy, and that alone was worth singing “Anchors Aweigh” with a hoarse throat.

The Lone Sailor statue is cast from the hulls of ships long past, giving it the truth behind that sentiment. Lives lost and watery graves. Also, strength of the future. A symbol of strength that will endure the weather, a hint that from here on we would be perpetual, like the water that carries our ships.

Being a Sailor meant more to me than I ever expected, and no matter what happened since, it is something I will always carry with me. It was a part of me, and it continues to be, like that damned statue w/ his jacked up collar and his damned hands in his damned pockets. I have pride in that part of my life, no matter how it ended, no matter how it was cut short. No matter how the career I wanted was yanked out from under me and no matter how I feel betrayed by the very body that carried me through those days of training and “snow watch” at Great Lakes, I was a Sailor, it is a part of me that I treasure. It is a strength that can not be taken from me.

I hope that you get a chance to pay a thankful word to a Veteran today (or tomorrow depending on where you are). Whether a thank-you for what they have done, are doing, or will do (because, Active Duty are Veterans too), remember that their service meant something to them in some manner also. It wasn’t just a pay check or a call to duty. In some way it became a part of that person. It wasn’t just a uniform we put on or stamped dog tags. It was a part of our person. Something we will always carry, but not like a weapon or a line. It changed us. In our very inner most being, it changed us, hardened us and gave us the strength of dozens of ships to endure, even if it isn’t obvious to one who hasn’t served.

You don’t take that off.

It is cast on us, like bronze.

Cross posted at random babble…

Appealing the Indecision

military, Uncategorized, ,

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate.  Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

The MedBoard has handed down its decision and you have been given ten calendar days (this is very specific, calendar days, not business days) to vie for any appeal if you are unhappy with or believe that the findings were not in your best interest.

Here’s the catch.

One of the doctors who wrote a recommendation for your review board has to agree to write a rebuttal to the review board on your behalf.

If the military and DoD as a whole are pressuring doctors to give lower diagnoses to prevent higher disability ratings, how many doctors do you think are going to come rallying on your behalf?  I’ll wait while you count them.

If a doctor has already written a recommendation to the Medical Review Board chances are they aren’t exactly champing at the bit to write a recommendation that goes against their original finding.  They also have to submit new diagnostic criteria to show why they think that your case has merit for review.  It takes time to do this, and the doctor has to be willing to fit you in to their schedules in order to accommodate this.

In my case, my filing doctor had done all he could do.  He had written the strongest case that he could, but the case depended on the letters written by the specialists, including the rheumatologist.  The rheumatologist was my turncoat.  He, together with the chiropractor, had suggested my diagnosis, and had proceeded to treat me accordingly until my review board needed letters written.

I received my MedBoard findings on a Friday.  If you are keeping count at home, Friday counts as calendar day one.  Saturday and Sunday are days two and three, and on Monday I was scrambling to get my filing doctor to find time to see me.  This required me to make a walk in appointment, which left me waiting all day for a cancellation, only to be told that he could do nothing to help me.  Day four wasted.  Day five came (mind you, I was missing work but still getting calls about it, plus still receiving my regular treatments), and I could not get an appointment with the rheumatologist.  I called, went to the office, sat in the waiting room, left messages on days six and seven.  Nothing.  Finally, on day eight (the last day for me to do anything at all, because my day ten was a Sunday, and my response would be entered Monday), I waited until I saw the rheumatologist, and literally chased him down, in tears, and begged.  Sighing (yes, he sighed, audibly), he let me into his office to hear me out.  He told me point blank that no one had ever said that I had fibromyalgia (what the fuck were they treating me for, and what the fuck was that at the top of my medical record?, I thought to myself), and that there was no way to prove that I did.  For all he knew, I could have CFS, Lupus, PTSD, chronic depression, or anything at all, and since it could be anything, his finding had to be that it was nothing, and he was unwilling to devote any more work to my case.

Unwilling.

If your doctors are unwilling to help you then you have no recourse at all.  None.  You have to have a doctor backing you to file an appeal.  I can not tell you the feeling of helplessness and loss I felt as I went to the liason’s office (which, I am not even sure why there is a liason, because mine only handled paperwork, and did nothing to help me except tell me I had 30 days to prepare to be out) to sign the paperwork that ended my military career with a MedBoard finding that I not only objected to, but that was wrong.  Wrong, and incorrect according to what every doctor who had written otherwise had told me up until this whole mess started.  All of a sudden they were not on my side, and I had no advocate.  It was me against them.

If you get a doctor who is willing to back you then the evidence is presented to the board again.  The board has the right to call you to appear before them in person to review your case at this point, which for some is a major deterrent.  This decision, IIRC, is final (there may be one more appeal opportunity, but it is a lather, rinse, repeat process, with that one being final).  That part is fuzzy to me…probably because the process from this point was so upsetting…

I had an opportunity to make a choice to remain in under what is called PERMLIMDU, or Permanent Limited Duty Status, which in the Navy means that you remain in for the remainder of your obligation under a specific set of guidelines, doing a job within those guidelines, retaining all of your benefits and allowances, but not being able to or allowed perform certain duties.  You have to have approval from the Command, your direct CoC, and at least one of your treating physicians for this to happen, and for a few reasons I hope to cover in another post, I was to ashamed to take this option.  So, I signed the paperwork, and with 30 days left began my transition from Sailor to Veteran.

During the transition there are long classes to take to help prepare you for civilian life, in which a lot of people from many offices come to talk to you about your insurance options, how to write a resume, how to get care from the VA hospitals, and how to tell time like a civilian (I still haven’t mastered that one, it isn’t “10 PM”, it’s 2200, dammit!).  One is a representative from the DAV (Disabled American Veterans), and I remember her presentation well, because I was the only person there with a MedSep.  She made me laugh out loud, earning me a dirty look and a lecture.  She was explaining to us about our exit exams, and that we needed to document everything that was wrong with us, to hold the military accountable for our condition and for reporting to the VA.  There are things that we can document that do not matter, like shin splints and a few others I can’t remember, and she was trying to tell us that if we documented it all together as fibromyalgia that the doctors had to give us a disability rating for all of them combined.  This was what made me laugh, and she made me tell her what was so funny.  I told her that it was great advice as long as she could direct us to a doctor who was willing to support that, because so far I hadn’t found one, and that I would love to meet one.  She spent about five more minutes reassuring me that she knew for a fact that if I said it was true then the doctors would back me up.  I am not sure we were in the same military.

The military’s determination to get doctors to downplay the conditions of service members, particularly those with invisible or difficult to diagnose conditions, leaves a veteran in a particularly vulnerable position, with no one on hir side.  There is no advocate.  There is no one to speak for you if your doctors are unwilling to back you up or fight for your care.  This dumps all the work and responsibility of getting the diagnosis and care squarely in the lap of the veteran, who is soon to be dealing with transitioning into a world that is long foreign.  Some veterans never make the transition successfully (about one in four homeless today are US Veterans, which is startling if you consider that veterans only make up about 11% of the population, and active duty military less than 1%).  If this kind of treatment continues I believe that we are going to see these numbers surge, as more and more people return from combat with invisible injuries such as PTSD.  I hear that the military is going to start taking these things “more seriously“.  Good on them.  I don’t think it’s enough soon enough.  Too many people have fallen through the cracks…and too many more are still.

And what about all the people who weren’t “in combat”.  Cuz, ya know, women can’t be in combat, so how can they possibly have combat related injuries?  Or people who didn’t have combat related jobs?  Are their lives somehow less valuable?

The short answer?  Yes.  Because that is the first thing you learn at boot.  You don’t matter.  You are nothing but a number.

The long answer?  Coming soon.

The Labor of…

bodies, life changes, Uncategorized, , , ,

Moderatrix Note: “The Labor of…” is a somewhat intermittent series to re-explore things in daily life taken for granted before living with chronic pain and/or disability.  This is a space to share experiences.

Dressing.

I was never, and am not now a fashionista by any stretch of the imagination or definition of the word.  I have had a wary and ever changing relationship with clothes throughout my life.  I have had phases of my life where I have loved them, like, in college, when various eating disorders whittled me down to a size where everything fit (in a manner of speaking) and I really didn’t have to think about it.  If I liked something I saw I bought it and that was that.  When I woke up I rolled out of bed and wore whatever I grabbed, whether it was going braless in a sweatshirt to my 0750 class, a work uniform I passed out in, something cute I had just picked up last week, or my favorite Guinness t-shirt, which has survived every phase and is hanging on my drying rack right now.  I didn’t have to think or care about any of it.  Hell, I didn’t even do laundry a lot of the time…I just bought new underwear and work shirts if I needed them.

I had phases where I hated clothes, for instance, when I was pregnant, and not one damned thing ever fit or was comfortable.  Maternity clothes are a cruel joke, and those jeans with the stretchy thing in the front are some deamon’s plaything, if you ask me, although no one did.  I did, however, find great amusement in maternity underwear, though I seldom actually used it (I preferred my non-maternity duds), but I digress…  The colors, the cuts, the materials, everything was wrong…and in the end I had one pair of pants and a pair of blue jean overalls that fit and I survived in those.  Somehow I escaped the whole experience with a great Kid and a few stretch marks that I would show you if you asked, but ask me about maternity pantyhose…and I will ramble on for about twenty minutes about how they are made of pure evil.  Did I mention that I hated being pregnant?

I had a phase for about four years where clothes mattered dearly, as in, the creases and cut and hems all had to be perfect, and I took immense pride in my appearance and great personal pains to maintain it.  I call that my Military phase, because it was, literally.  The difference between a Good Sailor and a Hot Shit Sailor who got noticed was hir uniform, and I had mine down, all six standard issue Navy uniforms (this was before the new roll out of NWUs).  I was too poor to afford the dry cleaning that all my peers used and it worked to my advantage.  I spent great swathes of time carefully creasing my shirts and trousers and steaming my skirts.  I hand sewed my own rank patches on the sleeves because I trusted my work, and soon my friends were asking me to do the same.  My gig-lines were perfect and my boots and dress shoes mirror shined every wear.  I kept my combination cover in the box to keep it clean and well shaped and kept a spare dome for it in my glove box wrapped in plastic just in case (along w/ a neckerchief, and a shoe shine kit).  I had nail clippers in my purse for stray threads and a sewing kit for loose buttons.  Since most of my male superiors didn’t know female uniform and hair standards I made it my pet project, and I had a reputation at my “A” school for knowing my shit come inspection time.  My massively thick hair was always secured well withing regulations so that at any time any female sailor could see my example, and the “kids” fresh from boot were sent my way for guidance.

That thing, I held dearly until my body turned on m, and my health made it impossible for me to maintain that.  As the pain grew I was unable to maintain my physical standards, and my uniform standards became more difficult to keep up with.

Now, dressing is a laborious effort, but for an entirely different reason.  Practicality demands that I think about each and every garment that touches my person.  Is this cut going to pull on my shoulders and give my neck a strain and trigger a migraine?  Is this sports bra going to do the same?  If I go without one will it hurt my back too much?  I have to examine the seams along the toes of my socks to determine if I should wear them inside out, or if it is OK to wear them the “right way”, so that the seam doesn’t hurt my toes (a trick I learned from my diabetic grandfather).  I have to consider the weight of pants on my shins for high pain days, and the tightness of undergarments around my joints.  Even my wedding bands sometimes have to be set aside when my fingers are hurting.  My feet have always been wide, but even the widest shoes will still rub my feet raw on longer walks which makes buying shoes difficult (and sometimes expensive), since my beloved Crocs and Birkenstocks aren’t always practical for all weather.

Fabric is a concern as well.  I tend to break out in rashes at odd times, and for no medical reason we can determine, so I have to make sure that the fabric isn’t harsh on my skin today, and sometimes I have to change my clothes two or three times before I figure out what I can tolerate.  Oh, yeah, and did I mention how many spoons it takes to get dressed just once?  Sometimes getting dressed for public consumption means that my only activity for the day was getting cleaned up and dressed for said occasion.  Sometimes that means that I might have to choose between the shower or getting dressed at all.

How I wash the clothes matters.  The detergent and fabric softer need to be gentle, and at any time my skin will decide it doesn’t like the one I am using, again, for no medical reason we can find.  I have circulated through as many “free and clear” as I can find, hitting all the “natual” ones in the way.

Getting dressed has moved beyond practical for me.  The formerly simple act of covering my body somehow became a great labor, one more thing to take my time and my spoons.  Not exactly a fun thing to admit for the fashionably inept, who would rather just pull on the first thing she grabs, and who never really understood why “you can’t wear those shoes to the bar” *shurgs*.

The Invisible Disability

media and pop culture, , ,

Moderatrix Note: Originally posted at random babble… on 15 September 2009.  At the time the movie was just out over the previous summer.

Because of the new movie that is out I am currently re-reading Jodi Piccoult’s My Sister’s Keeper.  I read it about five years ago, but I read that the screenwriter for the movie changed the ending (why do we do these things, Hollywood?  The movie ending sounds awful, but more on that after I see it), so I thought I would brush up so that my memory is fresh when I see the movie.

There is one character in the book, Campbell Alexander, who is a lawyer who agrees to take Anna’s (the central protagonist) case for medical emancipation from her parents, pro bono.  Alexander has a service dog that assists him.  The need for the dog becomes something of a running joke throughout the book, because everyone assumes that if he has a service dog he must be blind, which he is not.  He cracks a series of jokes, including “I have an iron lung, and the dog keeps away from magnets” to avoid directly answering any questions.  It isn’t until the end of the book that you find out why he actually needs the dog (but re-reading this I find that there are many fairly blatant clues to the acute reader), and no I will not tell you, just in case it happens to be omitted from the movie. I am a jerk like that.  =)  While Campbell Alexander’s situation provides a good many of moments to laugh in a book that is incredibly tear jerking, his situation is all too familiar.

See, the reason Alexander feels the need to crack jokes and be sarcastic is because his need for the dog, named Judge (…ha ha!  I C wut U did there!) is constantly questioned.  Every time he walks into a restaurant, a hospital, a public building and despite the fact that Judge is described as wearing a service dog’s harness he is told that dogs are not allowed.  When he mentions that Judge is a service dog the common response is “But you aren’t blind!”.  Campbell Alexander’s reason for needing a service dog isn’t obvious to the casual person on the street, but his need, his disability, is just as real in the world created in the book.  But were he a real live person living in the world today his disability would be met w/ the same types of skepticism.

Even though it is becoming more common to be diagnosed with what were previously thought to not be real conditions the idea of an Invisible Disability is still foreign to most people.  People living with conditions such as Fibromyalgia, Rheumatoid Arthritis, Sarcoidosis, any number of non-neurotypical disorders, or Lupus, just to name a few, go through chunks of their lives never showing visible signs of the often constant and frequently overwhelming pain that sometimes limits their lives.  I know that when I am on the subway in Seoul I am given odd looks if I use a seat that is left open for PWDs, even though my joints and legs hurt so much that standing brings tears to my eyes, because no one can see my pain or know my need.

It is easy to assume looking at a person that they are completely able-bodied.  TAB has become the norm to society at large, and in order to be anything outside of the default you have to display physical signs of your difference.  That is what our society today demands.  A wheelchair.  A handicapped parking plate.  A cane or seeing-eye dog.  The lack of these markers can mean the difference between accessibility with independence, and limitation.  My need for accessibility isn’t obvious unless I point it out, but it is real.  It’s the reason I have to ask if the single’s lodging on a base has elevators or insist on staying in the main building which does.  It’s the reason that some people get angry when limited access forces them off of their scooter, in great pain, while standers by watch and assume that the person is faking in the first place.

The presumption that a disability must come with a big obvious sign so that other people can identify them is part of the problem to making the world outside our homes accessible to everyone.  It isn’t the job of PWDs to make their conditions obvious to you or to explain themselves to the AB-TAB crowd, but it should be the responsibility of the public and society to make sure that PWDs can access the rest of the world, which is a step, for many, to independent living.

The TRICARE Pharmacy and the Second Shift

accessibility, military, Uncategorized, ,

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate.  Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

Background on the Second Shift for the Disabled here and here.

When I have to run several errands I try to put them all into one day.  There are up sides and down sides to this, the upside being that I don’t have to drag myself into the main post multiple days, the down being that it is almost guaranteed that I will be doing nothing for the next couple of days except bonding with my sofa.  Getting to the main post itself is an ordeal, figuring out if I can make it to the bus stop or if I should spring for a taxi, both which require considerable walking, and then it is another ordeal getting from one building to the next, timing getting back to the smaller post to pick up The Kid from her bus and getting home.

But life is full of things that require this type of planning, not the least of which is refilling medication.  I saw that I was needing refills on my main medications so I planned this trip to coincide with some other business I had to take care of.

The pharmacy is a time suck.  There is really no other way to describe it.  Everyone, active duty, dependent, civilian contractor and retiree alike use the TRICARE pharmacy, and it is pretty busy all the hours it is open.  There is a website where a person can enter their scripts ahead of time “to avoid waiting”, but all this really saves is the five minutes you wait at the window while the pharmacist fills the bottles, since they won’t fill a bottle for a controlled substance until you sign for it anyhow.

I currently take two medications that are considered controlled substances by the DEA and FDA.  I am not familiar with schedules and what gets thrown on what schedule list and by whom, but I know that this adds extra hoops to my refills.  I was not made aware by my doctor just how many.  After doing the usual line dance involved to get a new fill for my pregabalin (because you don’t get “refills” on this, you only get new scripts) I showed up at the pharmacy window.  I knew that there was going to be trouble when the pharmacist saw me and immediately called over an Army Medic to talk to me.

The Medic asked for my form.  The blank stare on my face told him that I had no idea what he was talking about.  He repeated his question, adding that it was the approval form for my pregabalin.  When I told him that no one mentioned any form and that I didn’t have one he informed me that he filled my script last month on a verbal OK and was not going to do so again.  I needed to go back and find the prescribing doctor (yeah, because it is that easy) and get the form.  The thing is, the prescribing doctor isn’t my doctor, because all controlled substances have to be signed off by a doctor of a certain rank, and my doctor is a civilian.  I have never met this doctor.  He simply approves my meds, and my PCM is on leave.  Now, mind you, I have already gone through several steps just to have this doctor order this medication with my PCM on leave, which is only one extra step than with her physically here.

As it turns out, not only is pregabalin a controlled substance, but it is also categorized as a TRICARE Non-Formulary medication.  TRICARE classifies medications like this:  There is a list of prescription medications that must be kept in stock at all MTFs called the Uniform Formulary.  This is broken into two categories, generic and name brand.  Then there is TRICARE Non-Formulary.  From the website:

Any drug in a therapeutic class determined to be not as relatively clinically effective or not as cost-effective as other drugs in the class may be recommended for placement in the non-formulary tier, Tier 3. Any drugs placed into Tier 3 are available to you from the mail-order or retail network pharmacies, but at a higher cost. Prescriptions for non-formulary medications can be filled at the formulary costs if your provider can establish medical necessity.

I have to get my doctor to prove that this medication is better than all the other medications in the formulary for me, which wouldn’t be frustrating if I hadn’t had three doctors beat me with the “Well, if you don’t want to get better then don’t try Lyrica” dead horse the minute it was FDA approved.  *ahem*

The rub is that apparently I am expected to personally know of and make sure that these forms are filled out and hand delivered.  I knew that approval had to be given by an appropriate ranking doctor, but not that I had to get it in person.  So Mr. Medic Pharmacist sent me over to find the prescribing doctor who wanted to review my patient history, again, because he can’t be bothered to run my Sponsor’s last four into the computer and look at it when he writes my scripts.  I had to go find the doctor, review my history, and hand carry the form back to the pharmacy, only to find that the doctor came along five minutes later to make sure everything was fine (the doctor turned out to be pretty great, actually).

This has to be done every month, because non-formulary meds can only be given in one month amounts.

At any time a board of doctors can decide that something in the other two tiers is more cost effective for me and deny me the pregabalin, even if my doctors believe this is the best course of treatment, even if I have been on this medication before, even though I have already adjusted to the many side effects, and even if the Flying Spaghetti Monster hirself descended and said it should be so…

This paper trail runaround is a nightmare for someone with limited resources of energy and time.  It literally took me two hours to fill one prescription bottle, most of that time spent walking from one end of the building to the other (with a fun fire drill in the middle!).  This kind of running around puts significant strain on those resources, and for me it left me literally unable to do much the next day, needing extra hours of sleep and more pain medication to recover.  Now that I know the process I can plan ahead, but the knowledge is part of the problem.  We can be vigilant with our care, question our doctors in the precious time we have one on one with them, phone and email and re-check every thing, but still, some of us have to push our resources further.  It’s terrible, and it shouldn’t have to be this hard.  Not for our basic needs.  Insult to injury is that this is what is going on in our military health system.  Our troops and veterans are doing this run around.

It’s a great thank you.  Really.

The Labor of…

life changes, , , , ,

Moderatrix Note: “The Labor of…” is a somewhat intermittent series to re-explore things in daily life taken for granted before living with chronic pain and/or disability.  This is a space to share experiences.

Sleep.

My relationship with sleep has changed dramatically throughout my life as I have grown and changed.  I am told that I was one of those babies that slept so soundly that my mother could vacuum under my crib during nap time and that even a diaper change didn’t phase me.  Later as a toddler I would protest nap time only to succumb to two solid hours of heavy, sweaty sleep.  My middle childhood years were plagued with chronic bed wetting, which my mother didn’t totally understand at the time (she would make a scene of putting cloth diapers on me in front of the family at eight years old, or showing my wet sheets off to anyone who would see them) until they discovered that I was both a deep sleeper and had a tiny bladder that didn’t keep up with the rest of my body’s accelerated growth.  I also had frequent kidney infections which exacerbated the problem.  In High School I crawled through with an average of five hours a night between working as many hours as child labor laws permitted on top of track and band practice with AP classes and boyfriend who somehow managed to squeeze in there.

College was my first experience with insomnia.  I am pretty sure it was related to my OCD and subsequent depression, but I can’t be sure.  I would go for days on very few hours of sleep, and after a couple of weeks I would crash and not be able to stay awake at all.  I eventually scheduled all of my classes on Tuesdays and Thursdays so that I could work from sun up to sun down and beyond the other five days while still participating in college marching band (Go EMU!), and still managed to perfect a beer purification system out of my liver.  Some how sleep was something I was able to live without for extended periods of time.

Sleeping positions changed as well.  I was a stomach sleeper for as long as I could remember until I got pregnant at 21, and even then I only gave that up when it became physically impossible.  At that point I begrudgingly gave in to the side sleeping that was all my doctor could rant about.  I had to use around five pillows in addition to the ones under my head just to get comfortable on my side.

Sleep was something I took for granted.  I loved sleeping.  I hated that I having to admit that I needed it.

Now, I dread it.

Sleep has changed again.  I have to consider every tiny detail of sleep, from the time and amount to the bedclothes and the temperature.

I have to get just the right amount.  I can’t sleep too little or I will have no energy at all the next day and my body will hurt intolerably to make up for the energy I didn’t restore.  If I sleep too much I can’t adjust and I will fall asleep if I sit still long enough.  I have to try to get to sleep at the same time every night, weekday and weekend.  We don’t have the luxury of “school day” or “not school day”.  We still have to adhere to relative bed times on non-school days to keep my body on a schedule.  Not being tired can not be an excuse, and that melatonin supplement pill becomes a dear friend, something that does not interact with my meds, but helps me fall gently asleep.

The environment has to be just right.  Too much noise will distract or frustrate me.  If I am awake or anxious it keeps my brain active and stop me from relaxing.  If it is too quiet the silence is too loud (plus, I have tinnitus, so the ringing gets a little intense), so we have an iPod with sleep music to play quietly (it has ocean sounds under music!).  The Guy is a cuddly sleeper, and he is very conscious of the possibility that he could hurt me while we sleep.  He worries that he will also make me too warm, and sometimes I worry that he doesn’t sleep well because of this (although, in truth, the only being on the planet that could sleep easier is a newborn puppy).  He will run a fan or the AC if he thinks that he is kicking off too much heat, but as soon as he thinks it is too cold he shuts it off.

The mattress that came with our beautifully furnished ville in Seoul (we could only bring so much weight of our belongings to Korea) was far too hard for me to sleep on and caused me so much pain that I would cry and could never find a comfortable way to lie, so we had to put a memory foam topper for it, which isn’t as good as the memory foam mattress we had to put in long-term storage in California, but it helps immensely.  The pillows have to be just right.  One isn’t enough for my neck support, but two is too many, so we had to get a special cervical pillow made from foam to support my head and neck just right, otherwise I would wake up with a worse headache than I already have almost daily.  Since being pregnant I am unable to sleep any way but on my side, and I have had to learn how to do this without my limbs touching each other, because the weight of them is too much to bear.

The bedclothes have to be right.  Soft enough and not heavy, because sometimes the weight on my legs can cause me to cry from the pressure.  If they are too thin I get too cold, and extreme temperatures one way or the other exacerbates any existing pain.  This goes for all the blankets we use.  We also have to make sure that they are tucked in well (this is where my boot camp education pays off!) so that they don’t come undone and wind around my limbs which will also cause me to awaken in agony, but not too tightly so that I can move around freely so my joint don’t stiffen.  The tiniest things that would maybe bother someone else, cause them to shift in their sleep, will jolt me wide awake crying out in pain.  This ties in with nightclothes, too, because I have to make the same decisions.  I can’t have things that bunch up around my legs, but I have to have enough layers to keep me warm, and socks that are thick enough but that don’t have restricting elastic.  It’s a razor thin edge.

Any little misstep one way or the other throws a sprocket in the works and that can mean the difference between a tolerable pain/adequate energy day and a miserable one.  It can mean the difference between a day where I can accomplish a few tasks and maybe have time for a brief walk or a day with my feet propped up carefully.  All of this work has done nothing for my relationship with sleep.  I still love actually sleeping, but hate admitting that I need it.  Now, however, I hate that I need it so badly, and that my body will take it whether I am willing or not, but that even if I do need it sometimes it will turn upon itself to disrupt what I have worked so carefully to craft.  Sleep is no longer indulgent or relaxing or restful.  Sleeping has become a laborious effort.

Ableist Word Profile: I Feel Your Pain!

101, Ableist Word Profile, feminism, , ,

Welcome to Ableist Word Profile, a (probably intermittent) series in which staffers will profile various ableist words, talk about how they are used, and talk about how to stop using them. Ableism is not feminism, so it’s important to talk about how to eradicate ableist language from our vocabularies. This post is marked 101, which means that the comments section is open to 101 questions and discussion. Please note that this post contains ableist language used for the purpose of discussion and criticism; you can get an idea from the title of the kind of ableist language which is going to be included in the discussion, and if that type of language is upsetting or triggering for you, you may want to skip this post.

I hear this one all the time.  I am pretty sure I am very very guilty of using this one.  I saw it used the other day in a context that I am not going to get into here, but it really struck it home for me in a way that made me jump (not at all literally) and decide that it needed to be unpacked here a little.

I feel your pain.

I had to go to the school to pick up my daughter because she had a slight fever.  Anything will get them sent home during the Flu Panic going around right now.  We walked to the nearest shoppette to pick up some canned soup for lunch before going home, and The Kid had that Look.  The tired eyes, with the dark circles and the pallor that told me she just wasn’t feeling well.  We got our soup and orange juice and a cab to get home.  She nodded off on the ride home as I stroked her hair, shoving aside my own pain wishing I knew how she felt and what she needed.  She can only tell me so much.  She can only give me clues to what it feels like to be inside her body feeling her experiences of being sick.  She is the only person who can communicate the way it feels to have that fever or that headache or to have that need for a nap and soup and cuddles and blankets.  No matter how much I understand how colds and germs and immune systems work, and no matter how well I know that low grade fevers are actually good for you, only she can tell me how it feels.

I can’t feel her pain.

Just like you can’t feel my pain.

One of the core principles of feminism, IMO, is the concept of bodily autonomy.  My body is mine.  Mine and mine alone.  You don’t get to tell me how to manage it, you don’t get to touch it without my permission, and anything that tries to attack me from the inside is treated as an enemy hostile if it dares grow uninvited.  This stems from the fundamental idea that you or anyone else who isn’t me could never understand my body better than me.

Coinciding with that, is that no one other human being other than me knows how it feels to be me, to be in my body, to literally feel the pain of living in this body.

Even the best of my doctors, the ones who care with all of their compassion, the ones who were and are capable of great empathy, can not physically feel my pain.  No matter how many fancy diplomas are on their walls or how many scans they’ve run or how many times they’ve played pin cushion with me, they still need me to resort to the handy dandy pain scale as a rubric for making this clear to them.

So, how can you, random stranger, on a random message board or in a random comment section feel my pain?

Can you feel the moment I wake in the morning, those three fleeting moments where I forget and turn my head too quickly, jarring my neck and triggering a migraine that has been hanging over me like a shroud all night?

Can you feel the way my body feels like it is bruised in all of the places it rested against itself or the mattress all night?

How can you, random person in line with me at the supermarket, feel my pain?

Can you feel the pain that my hip and other joints are causing, necessitating the cane, or that the cane is causing my back and shoulders?

Can you feel the dizziness that the blearing pain in my head causes?

How can you, random family member/friend/concerned citizen, feel my pain?

Can you feel the numerous side effects that my body must endure from the various medications I need to make it through a day?

Can you feel the rawness of my throat from the numerous times one of those side effects was not being able to hold a meal down?

I am not discounting the way that you want to relate to me, or to express that you share in my disapproval of something.  I understand that you want to sympathize with my frustration.  You may even want to align with my feelings, or appreciate my sentiment.  There are lots of options that you have that don’t somehow imply that you have some kind of insider info on the goings on of my body or what it really feels like to be me.

A Delayed Deployment of Care

accessibility, medical practice, military, , ,

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate.  Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

One of the most frustrating aspects of dealing with a chronic pain condition while under military care, as an active duty service member or a dependent is an inconsistency of care.  Something that I learned pretty early on is that my best bet for getting the best care is to have a regular doctor.

May I drop into a sports metaphor?

Your regular doc, or in my case, my PCM, should be the quarterback of your health care team.  Sie should be the one on the field, aware of all the other team’s members (your symptoms, labs, tests, etc.), the plays your team have available (medications, treatments, therapies you are trying/have tried), the other team members (other docs and lab techs), as well as the special teams coaches available (specialists).  The quarterback should be able to run the plays and call audibles as needed, because the quarterback presumably knows the team, is comfortable with the team and the plays, and has been doing this a while.

But if you are playing on a military team your quarterback gets traded.  A lot.  Often without you even knowing, in the dark of the night like Jon Gruden to the Buccaneers.

It isn’t unusual to call central appointments (because no matter how many times you have seen your PCM you can not just call hir up and schedule your own damned appointment directly, even if sie told you to) and ask for an appointment with CDR (Commander) Happygunns only to find out that sie has been sent out w/ the Reagan to whatever mission it is currently floating.  To call this a hiccup in care is the understatement of the year.  It can pretty much end the season before the playoffs.

This is a huge chunk of what amandaw calls the Second Shift for the Sick if you are trying to navigate your health care through the military.  Now, you have to find the time to get over to the TRICARE office to request a new PCM (which usually has to happen in person).  That takes time and spoons, and may involve some accessibility issues.  If you have a chronic condition you have to make sure that you get a medical officer (who, to my understanding, is O-5, equivalent, or above) to make sure sie is qualified to handle chronic conditions, instead of a Chief or other upper enlisted Corpsman or an lower ranking officer, which is a majority of PCMs at most MTFs.  Now, you have to call to set up a meet and greet with this new PCM, and that is going to take time because CAPT Nukeboom already has existing patients, or is new and has to fit you into the schedule.  If the appointment you were trying to make with CDR Happygunns was for a prescription refill (like, oh, something super easy to get like Vicodin or another pain medication), this means that during all of this time your quality of life is being compromised.  That prescription might mean spoons, which translates into showers or laundry or hugging family members or just being able to sit upright.  Maybe it was an appointment for much needed lab results (wait for it…).

CAPT Nukeboom isn’t going to just jump in and hit the ground running.  If we go back to the metaphor, sie is going to need time to get acquainted with the team.  Sie might even throw out the playbook and start over from scratch.  Odds dictate that CAPT Nukeboom wasn’t just going to write that Vicodin script or whatever you came for (yeah, I was kind of done w/ football too…let’s see if I can’t get a good hockey metaphor next time) anyway, you drug seeker, without really really making sure you really really need it.

Those lab result you were waiting for?  If you hadn’t gotten the results from the doctor that ordered them, and that doctor happened to be CDR Happygunns then you are going to have to go get new tests (WHEEEEE!).  Only the referring doctor can get the original results, but that’s OK, because CAPT Nukeboom wanted new labs and tests done anyway, and you haven’t been poked with something sharp in at least three months…

There is also a good chance that CAPT Nukeboom might disagree with whatever course of treatment CDR Happygunns was recommending at the time, regardless of how well it was working.  More spoons will be spent trying to reason with said new doctor who may or may not be receptive to your input.  If you are dealing with a best case scenario they are, and things speed along nicely, and you are only set back about three weeks in your care (only!).  Hopefully you can hold on without your Lyrica or your pain medication or your anti-seizure meds or your anti-depressants or whatever else you are waiting on, because you are not going to get anything until CAPT Nukeboom is satisfied that sie has fully come to understand your file.  If you are dealing with a less than best case scenario, you are going to fine yourself back in the TRICARE office begging them to let you request another new PCM.  Second verse, same as the first.

There are obvious reasons why these things happen (um, Hi, Mr. President, thanks!), but there is absolutely no reason why it needs to continue this way for people living with chronic conditions.  Modern technology means that our medical records are kept electronically as well as in hard copy back ups for all the doctors to access.  Lab work and test results are available freely to any doctor with access as your health care provider.  Notes and thoughts and memos from the countless doctors and providers…oh and all the specialists are all still there…a phone call or an email away.

A bump in your care can be enough to set you back months, and maybe even undo any progress you have made at all.  For some people I know (myself included) it can be enough to make you try to just “tough it out” and draw inward, afraid to seek medical care.

While the military medical system has many wonderful facets, including the fact that it is “free” *ahem* there are some huge flies in the ointment that need to be addressed.  With the high volume and tempo of deployments going on and the demand of medical personnel in the field so high, it might do well to actually use the military’s love of contracting civilians a little more in areas where it could be more useful.

I’m just sayin’.