Tag Archives: military

For Cereal, Stars and Stripes? Mocking “Paranoia” is Headline-Worthy?

OK, so I saw this one in my paper edition because I get it the night before (and technically a day late, since I am in the future!), but you can find it online too.

In the 16 March edition of Stars and Stripes writer Jeff Schogol wrote an article containing letters from people who sent letters to the Defense Department website. He calls the letters he said the DoD provided to him “the more bizarre feedback it gets” and notes that “[t]he authors’ names were withheld, but all spelling, grammar and paranoia are authentic“. (emphasis mine)

The article, titled “Airborne bears to catch bin Laden and other letters to the Pentagon” seems little more than a great way to laugh at people for myriad reasons. Let’s poke fun at their lack of intelligence! See how they can’t construct proper sentences? Those silly people without proper educations and who aren’t newspaper columnists or Pentagon officials! Ha ha! That’s so funny!

There were several letters published by Jeff Schogol in his article that I don’t feel comfortable publishing here, because I don’t feel that it is proper to display these letters that were meant to be private correspondence and won’t further his ableism. I don’t want to further hurt a person who might already be pained by finding hir something they never meant to have public spattered all over the internet and a military wide newspaper. They were not meant for this type of dissemination, and I think it was vile of whichever Pentagon employee thought it was appropriate to release them to a newspaper. I also don’t feel that it is in good taste to print a letter in a newspaper with the intention of laughing at the “crazy” person, as it is clear here that is what is meant. We are supposed to have a good chuckle at the supposed ludicrous ideas that are put forth by the letter writers. Schogol obviously feels that it is OK to call people paranoid and make light of mental illness and disability. Har har.

I am going to invite you to write to Jeff Schogol at Stars and Stripes and let him know that you don’t think it was a great idea to run this article, or that it was in good taste to reprint these letters. Or if you feel inspired, maybe you would like to use the same venue as the original letter writers who thought that they were writing private correspondence to the DoD, and let them know just how unprofessional it was to release those emails to a newspaper for a chuckle.

A Conversation With a Pharmacist

[Scene opens with a loooooooong wait in the pharmacy before my number finally “pings” on the digital number-pinging thingy, as I struggle out of my chair, and hobble up to the pharmacist’s window, and hook my cane on the window ledge for emphasis as I hand over my ID and number slip, wincing in the fluorescent lighting on the other side.]

Army Medic Pharmacist: One moment.

Me: No problem, Specialist. (I am well aware that two of my three expected prescriptions require me to wait as they are counted, twice, some other fun stuff, though I no longer have to run around to get them, and have to be signed for, so I amuse myself by reading the literature he hasn’t bothered to hand me yet.)

[AMP returns with the Civilian Pharmacist]

Civilian Pharmacist: You have taken pregabalin with topamax before?

Me: Yes.

CP: What about this antacid?

Me: No. But I assume it is the same as my previous one.

CP: Yes.

[I sign for one med. CP hands me two bottles.]

Me: There should be a third script.

CP: No, only the two.

Me: There should have been a vicodin script as well.

[CP raises her eyebrows at me]

CP: You are on pregabalin.

Me: Yes.

CP: That is a time released pain medication.

Me: Yes ma’am.

CP: You don’t need vicodin with a time released pain medication.

Me: With all due respect, ma’am, I usually have both.

CP: Well, there isn’t a script for it, and I don’t think you need it.

Me: Well, ma’am, there should have been one, and I am going to ask you to call my provider about it.

[Staring contest ensues between Me and CP. I win. CP picks up phone and asks AMP for Dr. Awesome’s number. I can hear Dr. Awesome on the other end apologizing for forgetting the script, that the computer wasn’t working right when I was in her office, which it wasn’t, and that she forgot to put it in before leaving the office, and would put it in the next day she was in.]

CP: Dr. [Awesome] apologizes for your inconvenience. You can pick up the script on Monday.

Fin.

Tell Us About Your Visit…

I receive these great surveys after every doctor’s appointment any of us have with Medical here on Post. It is a survey from TRICARE asking us to please rate our visit with Dr. X on such and such date.

I received one for every visit I have with my regular doctor. We’ll call her Dr. Awesome. Except, the survey doesn’t ask me to rate Dr. Awesome, the survey asked me to rate my recent visit with, well we’ll call him Major Scriptwriter, because that is the function that he serves in my care. He is the supervising officer over my doctor, who approves all of my controlled medications. Every time one of them has to be refilled he has to sign off on the forms for them. I don’t actually see him unless there is a problem. In all fairness, he is pretty nice. But he doesn’t actually conduct my appointments. If I were to see him at an appointment, I would be more than happy to take a few minutes and fill out the surveys and return them.

I received several for The Kid’s immunizations asking me to review our appointments with Major Happygunns at Medical on several appointments. I matched the dates up in my datebook, not recognizing the name, and came to the conclusion that this must be the officer who supervises Immunizations. I do not know who this person is. Never seen hir. If the survey asked me to rate our visit w/ Sargent Needlejab, who has administered all of the vaccines and boosters and PPDs that we have needed since arriving in Country, and doing so while keeping The Kid from dealing everyone in the room a behind hook kick in the process (who decided to enroll her in Tae Kwon Do?), then great. He is actually a wonderful Army Medic, and is great with kids to boot, which isn’t easy to come by. He once let us sneak in to get a flu shot on a day that I had a particular foggy mix up and confused my appointment times.

But that is not what is going on here. I am being asked to rate supervisors based on what their subordinates are doing, and I am not OK with that. If I don’t return them I get little happy grams a few weeks or so later (because, funnily enough, they have to go all the way back to the states before arriving in my APO box, it seems) politely reminding me to please fill out my surveys.

The Guy thinks I should fill it out with really crappy marks, 0s across the board, and leave in the comments that the doctors couldn’t even be arsed to show up.

I am beginning to consider his suggestion.

Veterans Find Self Expression and Therapy

Moderatrix’ Incredibly Verbose Note: The linked article in Stars & Stripes held a couple of problems for me. One: It gave an impression that pharmaceutical therapy is somehow not a reasonable treatment for people dealing with mental health or anxiety disorders. This should not be taken as the opinion of myself, nor any member of the FWD/Forward team. I believe that it shows how stigmatized that direction of therapy can be, and how mental health services can be socialized to make men feel “weak” for needing them. How a person chooses to treat their mental health or social anxiety disorders is between themselves and their health care provider. Comments judging this course of therapy will be deleted and the commenter possibly banned pending a review. I will not have someone coming to this board and seeing their choice of therapy, which is helping them, mocked or dismissed.

Two: The linked article says that bibliotherapy is “poetry therapy”, when nothing I have found is that specific. Anything that I have found online, as well as my background in Greek and Latin root words, says that bibliotherapy is any type of therapy using the written word as supplemental therapy. I found that statement by the S&S writer misleading. I am willing to be corrected, but I am more inclined to believe that it is a part of a broad spectrum of treatment options. I find it like saying that “pharmaceutical therapy” means keeping someone pumped full of morphine all the time (not that there is anything wrong with that if that is what you need to manage your specific needs).

Nonetheless, I found the article incredibly interesting, and am ecstatic to find that veterans are finding ways to get care in ways that make them comfortable. Enjoy.

Spc. Victoria Montenegro received an Army Commendation Medal, complete with a “V” for Valor for helping her other team mates when her vehicle exploded in Karbala, Iraq. That same accident also threw shrapnel into her forehead and right eye. It gave her a complex fracture and bone loss in her left hand.

It also left her with PTSD.

Spc. Matt Ping also came back from “The Sandbox”, his time spent in Northern Afghanistan, he found himself mixing flashback with childhood memories. For him, the thought of a pharmaceutical approach, the normal approach taken by the VA, was too unappealing.

For both of them, a different kind of therapy program has been incredibly beneficial.

The Walter Reed Medical Center in Washington, D.C. has a program, run by Roseanne Singer, that helps veterans deal with their PTSD through the written word, mostly poetry. Participants are welcome to come to an informal gathering that takes place in the lobby of the Mologne House. Participants are under no obligation to participate, they may come whenever they feel comfortable, talk as much or as little as they like, and share or not share what they have written. The program does not analyze or critique, but rather focuses on getting veterans who find it otherwise difficult to communicate their feelings to convey them through writing. Or, as Ping , also now a part of Lisa Rosenthal’s Vet Art Project in Chicago describes poetry therapy:

“Poetry helps me deal with coming back to a society that’s gone in a different direction,” Ping said. “Coming home is one of the strangest things I’ve ever encountered. The 16 months of isolation and being secluded and then coming back and trying to be the same person you were before you left. I don’t know if that’s possible.”

Ping also has a blog where he shares his poetry (I have only scanned the front page, and I make no guarantees about triggering language).

Montenegro’s poetry focuses on the pain of being a “young, short, wounded female in a world of men,”.

“A lot of times around the hospital, I’d be mistaken for somebody’s family member,” she said. “It bugged me.”

Overall, finds the self-paced program beneficial, and enjoys the control over her own healing the . There is no pressure to heal at an expected rate, no one telling her that she should be over it by now. If she doesn’t want to share something, she doesn’t have to.

You can read her poem “Perspectives” (which I thought was moving) at the S&S link, and if you have a flash player you can listen to her read it.

The more ways we find to help our returning troops the better. If they aren’t thriving in the traditional therapy programs (and I can understand why), or if they aren’t being given proper therapy in addition to their drug treatments (I can relate), then we need to find therapy programs that do help them. We owe it to them.

Why ‘What People Think’ Matters

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.

Cast in Bronze

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

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.

Recommended Reading for November 2

It’s my favourite Monday of the year! The clocks fell back an hour for most of Canada last night so I feel like I’m up extra early and have lots of time to accomplish things today!

Not that this actually works out in practice.

What I Want To Write To Abled-People But Don’t:

How do you talk to a disabled person?

Twice this week, two people who were listening to me talk about the social changes that coincide with disability told me that people just don’t know how to talk to someone in a wheelchair. Now one of these people, a friend, certainly talks to me and the other person works with a service dog group, so they don’t mean themselves. I’ve found what they said to be true. My suggestion is to at least try, because often you’ll be the only person who does. This is often more damaging to my children than to me. Converse with me as you would with anyone–about the kids’ school or activities, education, politics, the arts, travel, our children, the odd weather, upcoming holidays, disability issues, health care reform. If you don’t know me, make the same small talk with me as you would with anyone. If you already know me, I’m truly the same person. If you’re feeling awkward about wheelchair use, work on overcoming that; I don’t feel awkward about it at all but I do sometimes feel absolutely unwelcome when you won’t make eye contact, say hello, or speak to me anymore. If you’re so concerned that you’ll be rude that you’ll freeze up, here are some suggestions, most of which have little to do with what you say and more with safety or manners:

The Knitting Community Has Assholes Too:

So I posted an innocuous, friendly sort of post in the large and voluble lace-knitting forum on Yahoo about knitters with disabilities which keep them from reading charted patterns. Correction–the knitters themselves had brought up their experiences and frustrations, and after some back-and-forth on the subject, I thought, “Hey, let’s see if anyone’s willing to send polite notes to publishers, en masse, to bring the problem to publishers’ attention.” Cos hey, I love my charts and I find following written instructions really difficult, but that doesn’t mean that knitters who can’t read charts due to a disability should have to miss out on the fun.

Well goddamn, you would not believe the sheer hostility that erupted. One woman in particular posted a rambling screed about how her mother had polio, but “overcame” her disability and got angry when people offered to help her; she then claimed that the knitting world didn’t need to be “fixed,” and that she was being discriminated against. I’m not sure how anyone is discriminating against this able-bodied person; did a brigade of visually-impaired and neuroatypical knitters march up to her house and forcibly steal her charted patterns? (Given how hostile her response was, I think I’d enjoy seeing that!) Language about “preferences” (a very different thing from a disability) and defensiveness about how it’s okay to like charts proliferated in the discussion. If suggesting that all knitters should get to enjoy their craft is such an offensive idea–if the idea of someone else sharing the dignity means, to these people, that there’s suddenly not enough dignity to go around, as if dignity was some kind of limited-quantity resource–then yes, the knitting world does need fixing. Then again, the world in general could use a little fixing, by those standards.

Denise Handicapped:

Last week on Curb Your Enthusiasm, Larry meets a woman named Denise in a coffee shop. They flirt and Larry asks her out. Larry is excited about it… until he sees Denise is in a wheelchair.

Larry is clearly repulsed by the idea of going out with Denise but as he tells his friend Jeff, “I was stuck. I didn’t want her to think I was a bad guy.” Jeff tries to reassure Larry that it’ll be okay to date a woman in a wheelchair by saying, “It’s an adventure, it’s an adventure.” Yeah, Larry, dating a woman who can’t walk is like a trip to see the freaky disabled woman in the sideshow at the circus. Who knows, she may even get frisky with ya. That’ll be adventurous, for sure.

So they go on their date. As Larry pushes Denise up to the restaurant’s entrance he says, “If we’re going to have a second date, you’re going to have to get an electric chair. I’m not doing this again.” Cue symphony of tiny violins.

In the news:

House bill likely to include long-term health care [US]

House health care legislation expected within days is likely to include a new long-term care insurance program to help seniors and disabled people stay out of nursing homes, senior Democrats say.

The voluntary program would begin to close a gap in the social safety net overlooked in the broader health care debate, but it must overcome objections from insurance companies that sell long-term care coverage and from fiscal conservatives.

Female veterans complain of less pain than men [Warning: This is a mainstream media discussion of a medical report.]

Female veterans of the Iraq and Afghanistan wars are less likely to complain of painful physical conditions than their male counterparts, according to a U.S. study.

The study of more than 91,000 U.S. veterans runs counter to what is seen in the general population where women typically show higher rates of chronic pain conditions, including migraines, fibromyalgia and persistent abdominal pain.

The TRICARE Pharmacy and the Second Shift

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.

A Delayed Deployment of Care

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’.