Category Archives: Uncategorized

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*.

And if this keeps up, there won’t be any

media and pop culture, social attitudes, Uncategorized, , , , , ,

My pet hate: “Crip Drag”.

Crip Drag is when a character has a disability, but the actor playing that character doesn’t have whatever disability they are portraying. Recent examples that come to mind are Kevin McHale, who plays Artie on Glee, any wheelchair-using villain you see in Doctor Who, and whoever got the role of Eleanor Perry in the Stargate: Universe episode “Sabotage”.

(And those are, of course, just shows that have wheelchair users. How many movies have you seen with a blind character who is played by an actress who isn’t?)

When pushed on issues of Crip Drag, the creators of these shows and movies often respond in one of two ways.

First, the character has the Miracle Cure Plotline, and thus they can’t have an actor with an actual disability play that role.

At first I didn’t question this much, beyond my general irritation with the Miracle Cure Plotline (Hey, television and movie producers: We have more stories than that, thanks), but I’m beginning to be very irritated with that idea the more I think about it. Amongst other things, there are wheelchair users who can (gasp!) walk. They may walk with a cane, or some other assistive device, but as long as you’re not asking them to climb several flights of stairs and then go for a run, they’ll probably be able to manage enough to satisfy the “It’s a miracle, he can walk!” plotline. I suspect blind actresses could act like they could see for the sake of a storyline, too.* It’s almost like they can learn to act like they can see, the way another actress can learn to act “blind”.

The second reason, the one that’s got me all irritated today, is the wonderful excuse that all minority groups get when they point out casting disparities: There aren’t any Big Names that will Bring In The Money who have disabilities, and Do You Know How Hard It Is To Find An Actor Who Could Do This Role At All?

The latest in a long line of insults of this nature is the casting of Abigail Breslin as Helen Keller in the upcoming Broadway production of The Miracle Worker.

For his part, the show’s producer, David Richenthal, claims that the production was unable to find a blind or deaf child actor with the star power to bring in enough of an audience to justify the show’s large budget, saying “It’s simply naïve to think that in this day and age, you’ll be able to sell tickets to a play revival solely on the potential of the production to be a great show or on the potential for an unknown actress to give a breakthrough performance,” he said. “I would consider it financially irresponsible to approach a major revival without making a serious effort to get a star.” The show will, however, be making an effort to find a blind or deaf actress to play Breslin’s understudy — but they won’t make any promises.

Gosh, I wonder why there aren’t any Big Name Child Actresses who are d/Deaf or blind (or both) and can thus play Helen Keller. Do you think it’s because there aren’t enough roles that are given to such actresses so they can develop a name for themselves? Do you think it’s because any roles that could be given to a d/Deaf or blind actress are given to non-disabled actresses? Do you think there might be some sort of bias going on in casting decisions that might be impacting this at all?

I sympathise a bit with the situation Richenthal is in. All he’s trying to do is make sure that an expensive production makes money, and Breslin has the star-draw. Apparently there are no other roles in The Miracle Worker that one could cast a name-drawing star in, and of course it’s foolish for anyone to think that the role of Helen Keller would go to an actress with a disability! What nonsense!

This is, of course, a self-perpetuating system. Disabled people are not cast in roles that would demonstrate their acting talent. They do not get the experience and the face time that the currently non-disabled do, so they can’t increase their name recognition. Then, when a role comes up that is perfect for a person with a disability, the role goes to someone else, because people don’t have a clue who this disabled person is.

The biggest actress, of course, who disproves this rule is Marlee Matlin. However, as much as I respect Marlee Matlin she is not the only actress in all of North America who is deaf. Honestly, I promise, lots of d/Deaf people do act. So do lots of blind people. My husband, who is a full-time wheelchair user, used to do Shakespeare. We are out here, and we are looking for paying gigs just as much as the next person.

Stop the Crip Drag. Stop the Miracle Cure Plotlines. And stop acting like it’s just a wild coincidence that you don’t know of any disabled actresses with the star power to bring in the money for the role of Helen Keller. It irritates me.

Please note: As with all of my posts, my schedule is such that I won’t be able to see comments for hours after you make them. My co-moderators will be approving most comments as they become aware of them, and will try and respond to any and all of them when I’m free.

* I’ve described wheelchair users as male and blind people as female because this is how they are typically cast in North American shows.

Friendly Reminder: Disability Carnival!

Uncategorized

Just your weekly reminder that we’ll be hosting the 60th Disability Blog Carnival here at FWD/Forward on November 19th.

Our optional theme is Intersectionality – how does identifying as being disabled intersect with being a woman? With being queer? With being of colour? With all of those things?

Of course, feel free to submit other posts you think are related to disability! Don’t be limited by the theme.

Submissions are due no later than November 17th. Earlier = Better! Feel free to email either your own or someone else’s post to carnival@disabledfeminists.com .

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.

This is Hard

activism, identity, media and pop culture, mental health, Uncategorized

I sat down this evening to find some stuff I could write a few posts about. I went to google news and did a search for “mental illness” and one for “bipolar disorder” and looked through everything that had come up in the past week.

There was a fair amount of stuff – some workers in the CA Department of Mental health are working enough overtime to double their salaries, continuing involvement in your field of work after retiring may help mental health, some news updates on the British guy scheduled for execution in China – so I just picked out a couple of stories to look at.  I was specifically looking for something that would be positive or at least neutral – something that wasn’t about people with mental disabilities being violent criminals, or about how pharmaceutical companies are making money.

So I picked an article that seemed positive: a piece by Glenn Close in the Huffington Post about ending stigma. It’s titled Mental Illness: the Stigma of Silence, and there’s a lot in it that’s great. She criticizes the movie Fatal Attraction (in which she starred) for portraying her character as a dangerous psychopath and misrepresenting the reality of mental illness. She points out how other “topics that were once unspeakable,” like breast cancer and AIDS, have gained wide acceptance and awareness, while there is largely silence on the issue of mental illness. She is frustrated by the societal assumption that people with mental disabilities are lost causes. She even calls out ableist language like “‘crazy,’ ‘nuts,’ or ‘psycho’.”

But. She opens the piece by saying that “mental illness and [she] are no strangers” – and then cites her “challenge — and the privilege — of playing characters who have deep psychological wounds” as the basis of her authority. She also mentions that her “sister suffers from a bipolar disorder and [her] nephew from schizoaffective disorder” (emphasis mine). Which … isn’t great and made me frown a bit. But I could have overlooked that – it’s an article with a lot of visibility that makes strong arguments against stigma, it’s connected to an organization “that strives to inspire people to start talking openly about mental illness, to break through the silence and fear [and has] the support of every major, American mental health organization and numerous others.”

Except then I clicked through to the website of the organization, Bring Change 2 Mind. And here is the first thing I saw: (screencap of a video, so excuse the graphics)

Bring Change 2 Mind

I literally gasped out loud. She is a mom, his mom. And he is not even her son, not even a person, not even a person with schizophrenia, not even a schizophrenic, he is labeled with his diagnosis. There’s other photos on the front page- someone with a “post traumatic stress disorder” shirt, and Glenn Close (wearing a “sister” shirt) sitting next to her sister, who is wearing a “bipolar shirt.” And I closed the window. Any kind of anti-stigma campaign that would involve me wearing a shirt saying “bipolar” on it is not a campaign I want to be a part of. More power to those who did choose to be involved, but it just feels wrong and isolating to me. Like that is the only relevant characteristic of the person with mental illness, while people without mental illness are defined in terms of families, relationships to other people.

And that’s why this (and by ‘this’ I mean being a person with a mental disability) is so hard – even those allies who genuinely want to end stigma and address ableism can do things that feel like a slap in the face. We are embedded in a culture so steeped in ableism with institutions providing a long term structure for discrimination and dismissal that it shows up everywhere you look – even when you’re intentionally looking for something good and supportive. So some days it seems easier not to pay attention to mental health issues at all, because around any corner could be something like this.

Yes, it DOES make a difference

blaming, i'm right here, media and pop culture, shaming, social attitudes, Uncategorized, , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

(Cross-posted at three rivers fog.)

I wrote this yesterday in an extreme fog and do not have the spoons to rework and polish it. Apologies for the brainspill, but these days it’s the only option I have.

***

For background, see Ouyang Dan’s post on the problematic aspects of the TV show House. Don’t tell me that people realize this is fictional. Don’t tell me that people know how to maintain that separation. Some do. Many don’t. And they’re everywhere. At the bottom of the totem pole… and in positions of power over the very people they are prejudiced against.

***

I was called back to work two weeks ago. I work at a government office that provides certain assistance programs. (Once you go to work for one government agency, you realize there are a whole lot more of them than you ever thought before.) I really don’t want to go into it any more specifically than that.

It’s been very rough on me. Last winter, work was physically draining. I basically have two whole hours every day that I am awake and not at work, preparing for work, or traveling to and from work, and semi-conscious. Not only am I so physically exhausted that I go to bed three hours after work ends, I am so physically exhausted that my brain just cannot be pushed any further. I have trouble comprehending the blogs and news sites I normally read; writing is usually out of the question. Of course, we won’t even talk about anything more physical than that — even preparing a boxed dinner for myself is too difficult. My apartment is even more a mess than usual, because I don’t have the energy to pick up the clothes that I shed as soon as I get the front door shut, the mail and personal items that trail after me from the couch to the bedroom…

Unfortunately, so far this year, it hasn’t just been physically draining. I’ve been dealing with a sudden onset of severe migraines, and not the type of migraines I’ve had since childhood and have an intimate knowledge of — these are more classic migraines, the nausea, the aura and vision distortion, the intense pain and pressure behind the eyes… The pain is not as overwhelming as my normal migraines (where a twitch of the toe makes me want to scream or cry or at least moan, but the movement and force of emitting any noise at all would hurt even worse, so I just curl up and remain frozen in misery), but the experience is just as miserable because it block’s my brain’s ability to function, even to process the smallest of information. I’ve been having trouble writing six-digit numbers on the top of each application. And normally I work faster than the worker next to me, but the past two weeks she’s been cranking out work three times faster than me.

It’s frustrating. I’ve been doing everything in my capacity to do to fight these headaches off. Everything. And no, I don’t want any helpful suggestions. But regardless, even with all the desperate measures I have been taking, they persist.

On top of it all, my endometriosis has decided to flare up at the same time. So I get double nausea, extreme abdominal cramps, persistent pelvic pain and other symptoms.

I’ve been in a lot of pain.

I take a lot of medications. For pain. I take medications that have no effect on people who do not have a specific type of pain disorder. And I take medications that people who are not in pain popularly take to get high. (I do not, for the record, take anything to get high myself.) And I put up with a lot of shit to continue taking one of few medications that works and that enables me to work.

(I guess I could give it up and therefore be putting up with less shit. But then I’d, you know, not be able to work. And for so long as I have the option to be able to work, I’m taking it. Because I may not even have that option forever. Situations change, bodies change, and bodies change how they react to medications over time. I’m doing what is necessary for myself and my family at this point in our lives.)

So, at work today.

I sit on the far side of the first floor of our building, along with all the other people working in my particular program, the people working on another program, and a couple stray general clerks across from all of us. The other program’s supervisor and one of the other program’s workers (OPS/OPW hereafter) were talking about a certain case, a woman who was being denied medication and needed help obtaining it. This was before lunch, it was a general talk in a work context, that is how to get the problem solved.

My husband and I went home for lunch, as we do regularly, given that we live less than five minutes from our workplace. It takes half the lunch period but it is worth the spoons because it makes the workday so much more bearable — two four-hour chunks rather than one long nine-hour one. We sit around, watch The People’s Court reruns, eat our lunch and laugh at the cats who get in silly, hyper, meddling moods around that time.

I returned from lunch, feeling a lot better having had a break from the fluorescent lighting and ambient noise of the HVAC system. And a few minutes after I got back, sitting next to the OPS scanning documents into the computer system, OPW wandered back over and began talking again about the client from before.

The medication? Oxycontin. Her doctor has been prescribing it to her for over 15 years.

And the conversation? Went like this. (As typed soon after in an email to my husband, as close as I could get to what they actually said, given how stunned and hurt I was while it was happening.)

OPW: do you watch house?
OPS: no not really
OPW: well he has some sort of leg injury, but he takes that other one, what is it? vicodin
OPS: uh huh
OPW: and they sent him to rehab, and he just had to find something to occupy his mind so he wouldn’t think about it
OPS: yeah they get addicted so easy
OPW: and now they put him on regular pain killers and he’s doing just fine
OPS: yeah a lot of the time tylenol or advil works just as well, people just want the high
OPW: exactly, and their doctors prescribe it to them and they hand it out to family members…

And the conversation went on like this for a couple minutes, with the two of them walking back and forth fetching printed documents, attending to the scanning etc.

I just… I’m not terribly private about my condition. I don’t bring it up, but if it’s relevant I talk about it. I do try to avoid telling my coworkers that I take narcotic medications (as opposed to just “medications”) but I have gone over it specifically with HR as it can be a security issue in some agencies.

I was sitting right there. OPW sits on the other side of me, and had to walk around me to get to where OPS was at the scanner. I was sitting right there.

They were talking about me.

They weren’t thinking of me, of course. They’d never make that connection. I’m young and thin and pretty enough. They know I work hard. Most of my office loves the hell out of me.

But if I had spoken up — rather than sitting there holding my breath trying not to cry — how would that opinion change? Would they start seeing me as lazy, as slacking off? Would they whisper about me every time I went to the water fountain for a drink? What was I taking? What was I doing with it? Would they start taking certain behaviors as symptomatic of addiction? If I passed too well one day, appearing to be just fine (to them; I am good at covering up my pain) — would they take that as evidence that I couldn’t actually be in pain and couldn’t really need that medication? And if I didn’t pass well one day — especially these days, when I’ve been stopped more than one time as someone remarks on how deathly pale I am and asks if I’m OK and tells me to take a break — would they see that resulting, not from my pain, but from the supposed addiction?

They were talking about me. They didn’t even know it. But I am that person on that medication. Pushing through the pain to keep working.

The difference is, Dr. House is a character.

I’m real.

And that woman. These were the attitudes of the people who were helping her resolve an issue. As much as I wish otherwise, workers do have some degree of latitude in deciding how they are going to approach a case, and can apply the law in different ways for different people, even if it appears pretty strict on paper.

I am that woman.

I have been there. I am there. I have to deal with unsympathetic figures in obtaining my treatment. Doctors, nurses, office staff, pharmacists, insurance reps, welfare reps, other reps. I have issues I have to call to have resolved. I have that person on the other line who’s promising me on the one hand to resolve the issue — but on the other hand …? How can I ever know?

I don’t know what was going on in this woman’s life. I don’t know if she’s dependent (there is a difference). I don’t know if she would be better off on another course of therapy. Or whether she’s tried all those other courses and they’ve given her awful side effects or they’re contraindicated given her particular condition or they’re unavailable to her due to income or access. I don’t know.

Maybe she’s abusing. Maybe she’s handing it out on the street corner.

Maybe she’s just like me. Just one person trying to power through this world as best she can. And this is the best way she’s found to do it.

Shifting the Responsibility for Disability in Uniform

intersectionality, justice, 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.

Disability issues overlap many facets of life, and one of our goals here at FWD is to bring as many of those to light as possible.  One voice I want to offer here is that of the disabled U.S. Veteran.  Specifically in feminist circles I feel that the disabled veteran is a voice that is seldom heard, and while hir voice may be part of a very small percentage, sie is facing a unique set of challenges.

One of those challenges is getting a diagnosis and care in the first place.  A person gives hir time and life to the military for one of a variety of reasons and find hirself trained for any number of jobs.  Sie can travel the world, see exciting places, or be sent off to fight in wars.  In the blink of an eye hir world is turned upside down.  Suddenly life isn’t what it was before.  Hir body/mind/soul are not what they once were, and coming to terms with that is no easy task.  If sie is one of the ones who has survived combat injuries or someone who became sick or injured while doing hir job in a Stateside base, sie does what sie has been taught to do…sie makes a routine appointment at the local Military Treatment Facility (MTF) to see her Primary Care Manager (PCM).

Hir PCM might evaluate hir, refer hir out for tests with specialists, or set hir on a merry-go-round of treatments.  When the ride stops sie may or may not have any answers, and there may or may not be a Medical Review Board pending to tell hir the terms of the future of hir career.

This is where things get interesting.  By interesting, I mean kind of fucked up.  One, any or all of those specialists might have diagnosed hir.  Those doctors start treating hir accordingly, because while TRICARE (military medical insurance) has its flaws, it kicks a lot of arse, and sie gets the care sie needs, mentally and physically (until her PCM deploys, but that is another post altogether, just you wait!), all under the umbrella of hir diagnosis.  But then the Medical Review comes up, and all of hir doctors have to write these recommendations, and suddenly things change in terms of hir care.  In hir appointments hir doctors start getting vague about care plans, and start talking around the actual words for hir condition…sie might suddenly feel dismissed or as if hir questions are not being answered.

As we read earlier this year, it isn’t a coincidence that military doctors are getting dodgier than Sarah Palin in an interview.  There seems to be pressure to not diagnose active duty personnel while active duty, and it isn’t just PTSD.  This service member might have received treatment for months leading up to hir review board only to have hir diagnosis revoked for the board so that the military could discharge hir with a lower rating.

It’s not too hard to understand why this happens.  The rating system breaks down a little like this:

A medical team of medical officers somewhere in Officer Land and look at your whole military medical record, and all these nifty letters written by the doctors who have seen you, along with some reports from your Chain of Command (CoC).  Based on all of this information they determine whether or not to separate you from the military.  They also give you a percentage rating of how disabled they think you are before discharging your from the military (there is also something called Permanent Limited Duty, which I can talk about sometime in another post).  It goes 0%-100% (the percentage is ultimately the amount of money they give you and “how disabled” they think you are).  Unless they give you at least a 10% rating you get nothing.  There is a list somewhere of what constitutes what percentages, and the military’s is different from the VA’s and each branch seems to interpret it differently.  Anything between 10 and 20% will grant you a one time award (I love that they use the word “award”, like somehow you have won a prize) based on your pay over the number of years you spent active duty (minus taxes, but including any bonuses you earned).   Most medical review boards fall in this range.  The magic number seems to be 30%, which gives you a monthly stipend based on the same numbers.  This math works all the way up to 100%.  After 80%, however, you receive what is called a Medical Retirement, which, regardless of how many years you have served, you retain your full benefits (insurance, commissary, exchange and medical) as if you had retired after 20 years of service.  That, I think is the rub.  It’s money.

When I had my review, it went a lot like that as well.  I could have been Sgt. X (well, Petty Officer X) in the rheumatologist’s office w/ a tape recorder.  The same guy who had written in my record that he was treating me for fibromyalgia had written in my medical review that there was no way to know for sure, that I could in fact have fibro, but that I could also have CFS, or PTSD, or just be really depressed, so there was no real answer.  His best advice was for a medical discharge and a referral to the VA for follow up care.  He also suddenly became angry because I didn’t want to be on Cymbalta, because I didn’t feel the need to be on another anti-depressant when ADs weren’t helping my pain (Lyrica wasn’t out yet, and Cymbalta was a new-ish treatment).  When a doctor tells me “I guess you don’t want to get better”, without listening to my concerns I know I have lost a battle.

After my review board findings came back (10% if you are nosy), my doctors seemed to have a shift in my care.  I was receiving less pain management care (well, less pharmaceutical) and the focus was more on mental health.  My review board found that I was too depressed to continue with active duty service, oh, and Trichotillomania sounded weird, I guess, so they tossed that on there, even though no one gave a fuck about it before.  Pretty much all of my care was to be managed through Mental Health (which, should be noted, is in no way a slam on mental health.  In my case, it was not the treatment I needed, even though for some people it is what they need), which made my physical needs very difficult to acquire while I was still active duty.  Yes, I was depressed, but I was depressed because I was in so much pain that I was having a hard time dealing with life and a child, and because no one was listening to me.  I was not in pain because I was depressed.  No one seemed to be interested in the sequence of events.  Before my review board findings I had a PCM, a neurologist, a rheumatologist, a chiropractor, an internal specialist, and a pain management specialist all convinced that all signs point to fibromyalgia.  Afterward you could have dropped a pin in room of crickets for the voices that came to my defense.

After my discharge I began the process of filing the VA claim.  It is pretty much the exact same process, minus the stuff from the CoC.  Oh, and it takes longer.  Hmmm.  I wonder why that is.

I firmly believe in my heart that military doctors (and doctors employed by the military) are being pressured to push us out the door and to let the VA sort us out because it is easier on the budget.  The Armed Forces Committee seems content to thank soldiers by one-lining them out of the fiscal year’s planning, and it pisses me off.  When I was given my board findings and told to sign off on it I was able to glance at the list of others who had been reviewed with my own.  I remember seeing at least a dozen names with finding for PTSD or other things that are “invisible”, all with a 10% or lower finding.  Brothers and sisters who have served their country, and this is the thanks we get when shit didn’t go as planned.  I know that this is happening to many service members, military wide.  I know that this is happening because our disabilities are invisible and easy to dismiss.  Veterans are slipping through the cracks, and Congress and the DoD is not only letting it happen, but damn well encouraging it.

This is the first in what will hopefully be a series of posts on navigating disability in the military health care system.