Tag Archives: medical care

Recommended reading for May 11, 2010

sqbr at Poking at Thorns (with gloves on): Disability in Speculative Fiction: Monsters, mutants and muggles

Fiction reflects social attitudes, and the social attitudes to disabled people tend to suck. Disabled people are presented as scary, pathetic, exotic, demanding, laughable, etc. But some tropes are popular/unique to SF.

It’s not all bad: speculative fiction allows for powerful allegory, and can also make very interesting explorations/extrapolations of future attitudes/experiences of disability.

Jamer Hunt (Fast Company magazine): Our Bodies, Our Quantified Selves

The data generated by this micro-physics of the everyday has the potential to create unprecedented, massive databases available for projects from a dizzying array of fields. Imagine what researchers studying disease epidemiology might do with this information, or anthropologists exploring changing social patterns within the digital proletariat.

Courtney at From Austin to A&M: Cosplay, race, ability and gender; or, who gets to dress up as whom?

Doing cosplay as a femme!Doctor (or a black Doctor, or a visibly disabled Doctor, etc.) is part necessity (as in, I am in a lady-body, so if I want to cosplay as the Doctor, he would have to be a lady-body-Doctor, like a person in a wheelchair would have to be a wheelchair-user Doctor, or a black person would have to be a black Doctor). But it’s also a way for fans to see themselves in the Doctor, as the unquestioned protagonist of the show. Doctor Who fans can say all they like that DW is progressive enough in its way, but it’s still dated by its insistence that the main character be a white British man.

Lisa Sanders (NYT Magazine): Diagnosis — Pregnant and Pained

She didn’t have a fever, but the racking cough made her body ache all over. Her husband said it sounded as if she were coughing up a lung. Her OB said it was probably a virus. Whatever it was, it didn’t go away.

Switchin’ to Glide: “Independent Women”: Privileged Feminist Ideologies and Ableism

Independence or the pursuit thereof is a pursuit of privilege; the less that one has to depend on networks and relationships the more “successful” that person is. This is a profoundly ableist notion, in the sense that it constructs any sort of dependency as an obstacle to “success,” and because of the way our society is structured, people who are disabled are neccessarily dependent on various support systems.

Recommended Reading for April 13, 2010

Renee Martin: I’m not a Feminist (and there is no but)

Blogs run by traditionally marginalised women do not attract the same attention by the media. When feminists are pulled from the internet for interviews, it is routinely the same white feminist voices representing the broad perspectives that are visible on the internet.

Flora: Guest Post – Heteronormativity and FSD

The vast majority of the medical profession is very heteronormative. If you are a woman, you are assumed to have a relationship with a man. If you don’t have one, you are assumed to want one. If you have one, you are assumed to be having intercourse, or to want to have intercourse eventually (waiting till you’re married etc). If you say you are sexually active, you are assumed to be having intercourse. And that even if you do other things besides intercourse, you still see intercourse as the “highlight,” as the only real important sex act.

evilpuppy at Livejournal: “I Have Always Depended on the Kindness of Strangers”

The attendant standing in the front section of economy was a blonde woman probably in her late 40s-50s and I called her over to explain that I needed her assistance because I wasn’t capable of lifting my luggage due to my disability. To my surprise, the attendant rejected my request while excusing it by saying: “If I helped everyone do that all day then MY back would be killing me by the end of the day!” I asked her how I was supposed to get my luggage stowed and her answer was: “You’ll just have to wait for someone from your row to come back here and ask them to give you a hand.”

Ally: Those are These, and These are…Me

I am one of Those People. I have friends who are Those People. That World, that you seem so quick to reassure me I am not part of? The world where every statement begins with a negative prefix, a non, dis, lacking-in, etc? That world of people who need things done for them, of people who take too long to do anything on their own, and get in everybody’s way, and can’t help but be inept, no one’s blaming them, but god, do we have to humor them? I am part of that world. When you talk about Those People, you are talking about me.

Maria L. La Ganga (Los Angeles Times): Severely disabled, is she still a mom? Battle nears over visitation rights of a woman injured in childbirth [trigger warning for very graphic descriptions of medical trauma]

Abbie’s parents have been named conservators of her estate, which includes a multimillion-dollar malpractice settlement, and are asking a Los Angeles County Superior Court judge to order Dan to let Abbie see her children. Dan has refused all requests, arguing that visitation would be too traumatic at their young age.

For Cereal, Time?

I was perusing the internets doing some research for work when I came across this lovely list from Time.

Seems some orthopedic surgeon is now the ultimate authority on all things medical…in every iteration thereof. Doesn’t matter what specialty or what your history. Dr. Scott Haig is now the expert, so stop what you are doing, right now. Do not pass Go, do not collect $200, and certainly do not trust whatever you have worked out in your personal health care, and just do what Our Dear Dr. Scott says.

Of particular interest to me is that the Great Dr. Scott says that narcotic pain medication “never” works for chronic pain. Ever. You should never use it unless your pain is acute, and if you are using it for such, you should stop, now. Forget your medical history, or whatever other methods you have tried or that have failed you:

The drugs are relatively easy to get and tempting to take, but you should never use them for chronic pain. Narcotics addiction is insidious. The drugs change who you are, and over time they make any and every pain worse.

This tidbit makes me want to say something to Our Dr. Scott…something that starts with an “F” and rhymes with “uck You”. Because Dr. Scott does not know my pain, or what I have been through trying to manage it, or how for the first time since all of this started I am living a semblance of a life that doesn’t leave me feeling worthless.*

I have some other very interesting and loud thoughts on Our Dr. Scott’s advice on “Exercising an Injury”, “Overplayed Allergies”, and “Google Abuse”, but I will let you all have at it now. I am going to go chronically abuse some narcotics.


*As in, each person has to decide what they can live with, want to live with, are willing to live with in terms of their medical care, and base their decisions on that personal choice insofar as it is in their control to be a part of that choice. It is part of my privilege to be able to do so and to say “I want to be able to do these things, and these side effects are worth it”. It is not that way for everyone, and I want to acknowledge that.

Trust Me

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A couple of weeks ago I asked my PCM for a referral to OB/GYN to replace the IUD that I had to surrender over the summer. She and The Guy and I have been talking for some time about the options and realities of having another child with my condition, and the answer we came up with is that we will wait for a little longer and see if I am still doing well with my current regimen.

Usually these things take weeks to schedule, but they called the next day, and I had my referral appointment on the second day. No matter what your history in the OB/GYN clinics you have to have counseling in order to get birth control through the MTF (all the ones in which I have been treated anyway), and the idea is that you get to talk to your OB/GYN about all of your birth control options, what you want from your birth control, take his or her advice, and decide on what is best for you. That is the theory, anyhow.

Some people (like me) have an idea ahead of time what they want or what is best for them. I, for example, due to my medical history and ongoing condition, am not able to use a hormonal birth control. Because of that I know that the copper IUD (ParaGuard) is the best option for me. Also because of this, I often read up on ParaGuard and IUD use in women, and try to keep abreast of any information regarding IUD usage, risks involved, etc. The IUD has such a bad reputation from so much misinformation that I feel the need to stay on top of this. Some would say this makes me a big smarty-pants-know-it-all. I say that sometimes a woman can’t trust that her doctor is going to take her word at face falue, and in the off chance that her doctor isn’t as awesome as mine she needs to be prepared. I am privileged to have information available at my fingertips.

I did not realize that my appointment would not be with my usual kick-ass OB/GYN, Dr. K, the same one who saved my fallopian tubes and life this summer and who promised to give me a shiny new IUD whenever I was ready for it. Not panicking when I saw the face of a woman I didn’t know I sat down as she introduced herself as Nurse Midwife V and told me that she had been looking over my file. Great. Maybe she was doing her background reading too, because I really tire of bringing every doctor up to speed constantly on my condition when it is right there on the computer screen for them to see. I don’t have a bunch of degrees and I can keep up with the required reading.

Before I had even the chance to say anything she told me that I was “not a candidate for an IUD” because of my ectopic pregnancy, and that she was not going to refer me for one. When I started to say that I understood that there were some risks she cut me off and told me that my pap was also past due and kept talking. I tried to assert myself past her obsession with people rooting around in my vagina, to let her know that I was aware that there were risks involved with the IUD, but that I knew that not only was what happened to me rare, but that I knew it was rare that it might happen again. But she wasn’t having any of that. She kept right on talking like I wasn’t even there.

I told her that my regular doctor had already said I was fine to have one. She responded by saying that it usually took weeks to get in to see him, as if this was supposed to deter me somehow. I also tried asking if the new ACOG regulations had been implemented yet, thinking this might distract her and get me closer to my goal (also, I am in the lag area none of them know what to do with, being 29, soon to be 30) and all she would say was that my pap was past due. Is it? I don’t know. I had a normal one in late 2008. I am in a mutually monogamous relationship…

When I left I told the front desk that I would no longer allow Nurse Midwife V to treat me. I am currently in the process of filing a formal complaint against her. What shouldn’t have happened here was having everyone from the desk staff to the NCOIC (that’s Non-commissioned officer in charge) tell me how nice Nurse Midwife V is and how everyone likes her so much, and that she is well known for being very good at what she does. That might well be true, great. My experience is that she was condescending and rude, and didn’t help me with my medical needs to my satisfaction. I think that people forget that sometimes, that doctors and nurses are also here to provide a service for us. I have a medical need, and she didn’t meet it. I shouldn’t have to settle for that. No matter how nice and great she is to work with. I also shouldn’t have my experience erased and dismissed by everyone in place to help me when things go wrong for me. That is not good patient advocacy.

I am rather privileged, however, in that I was able to make another appointment, and I saw Dr. K the next day. Had I been someone who had to drive a long way to a clinic, I might not have been able to. Had I had to pay out of pocket for this visit, or if my insurance limited the amount of OB/GYN visits or birth control counselings I was allowed per year, I would not have been able to. Had the travel cost me money I did not have, this would not have been possible. Had I not had the type of job I do where I set my own hours, I might have had to miss work. These are the kinds of things that women face when they come up against providers like Nurse Midwife V, providers who don’t want to listen to women, who won’t talk to women about their own bodies and medical histories. Providers who don’t trust women to be actively involved in their medical processes. Providers who can’t be bothered to involved women in the partnership that should be their own medical care, especially when it comes to their reproductive health. As it was, having to go back a second time was already taxing on my spoons, and stressful, because now I have be on my game. Suddenly I have to come in educated on something that my provider should have known the first time.

Thanks to meloukhia’s indominatable Google-fu I took in the information I was looking for, backing up what I had already said, that an ectopic pregnancy did not preclude me from having an IUD (or, that a previous ectopic pregnancy was not a contraindication for an IUD). Dr. K was impressed that I was so prepared. He told me that he had heard that information, but he himself had been so busy that he hadn’t had time to read any of the journals for himself. He told The Guy (who went with me this time, because they like to banter back and forth in Korean) that I should come in from time to time to keep him updated on current women’s health, and said he wished more people came to him so informed. He said that whomever told me that I couldn’t have an IUD was wrong. I was prepared, but I shouldn’t have had to come in as if I was fighting a war.

Two weeks later I have my IUD.

Nurse Midwife V didn’t care to ask why, after having one IUD failure (as rare as they are, b/c they are pretty much the most effective form of reversible birth control out there, with a fail rate of less than one percent), I would want another IUD. She didn’t bother to find out anything else in my medical history that might affect my decision to make that very personal choice about birth control, like that I am on medication that might have contraindications with hormonal birth control, or that previous specialists had determined that hormonal birth control is a migraine trigger for me. She simply asserted her own opinion (as wrong as it turned out to be) and called it a day. But all of that information is in my medical record if she cared to look. The same record she said she reviewed when she made her initial judgment.

And now, I can’t trust her.

Originally posted at random babble…

Does Outright Speculation Make This Disabled Feminist Angry?

Answer: Yes.

Let’s talk about this piece-of-crap article recently published on that oh-so-“liberal” news n’ culture site, Salon.com. I’m prefacing this post with a warning for ableist language and concepts on the part of the article’s author, Rahul K. Parikh, M.D. The article begins as follows:

There was a time when a celebrity’s sudden death almost invariably meant illegal drugs…[a]nd so it seems with Brittany Murphy, the bubbly and bright actress who died of cardiac arrest at 32.

Yes, it seems. Point is, we don’t know much yet. There are other health-related issues or conditions that can lead to cardiac arrest, but is this acknowledged? Of course not! Parikh continues:

The coroner’s notes allegedly claim a pharmacopia in Murphy’s bathroom cabinet: Topamax (for seizures or migraines), methylprednisolone (a steroid), fluoxetine (an antidepressant), Klonopin (for anxiety), carbamazepine (for seizures or bipolar disorder), Ativan (for anxiety), Vicoprofen (pain reliever), propranolol (for hypertension, migraines or anxiety), Biaxin (an antibiotic), and hydrocodone (a narcotic pain reliever). Gone are the days of shameful crack pipes and empty gin bottles.


Murphy’s medications, like those of [Heath] Ledger and Anna Nicole Smith, are on the shelves of your local drugstore, available with a simple trip to the doctor — or doctors — whom you merely need to convince that you need the stuff. Did one doctor prescribe her those meds? Did 10? We don’t yet know. But as a doctor myself, I just kept wondering (and not for the first time): What if doctors were more like librarians? Would Brittany Murphy still be alive?

Cue scary music! THE DANGER IS ON THE SHELVES OF YOUR LOCAL DRUGSTORE. Nevermind that people with chronic pain conditions and disabilities have to jump through numerous, often ridiculous hoops just to get, say, a month’s supply of medications that help them function and/or live life to the fullest extent possible. As one of these people, I am of the opinion that Parikh is being rather disingenuous here; these drugs, at least for us “average” folk with chronic pain issues, are usually not easy to obtain.

After nattering about how the medical field should follow the example of public libraries when it comes to monitoring people and their books meds, he continues:

One of the many negative consequences of such fragmentation is how ridiculously easy it can be to get drugs. Most doctors know patients who have desperately angled to get a prescription they don’t need, usually highly addictive pain medicines like Percocet or OxyContin. This is what we call “doctor shopping,” hopping from one physician to the next until they find someone willing to write a script. When the supply dries up, they go to another doctor, and then another. One 53-year-old man in California visited 183 doctors and 47 pharmacies in one year to support his addiction to painkillers.

Hey, nice use of anecdata there! What on earth does one 53 year-old guy in California have to do with Brittany Murphy’s situation? As for “most doctors” knowing a patient who has “angled” for meds they “don’t need” (who makes that judgement, I wonder?): cry me a goddamn river. The endless Helen Lovejoy-gasping about ADDICTION!!1 in fact makes it incredibly hard for some of us who need these medications to obtain them, and no amount of 1984-esque War is Peace anecdata–from someone, no less, who is supposed to help people in pain as part of his chosen occupation–is going to change that.

In short, the experiences of people with chronic pain are going be different than those of an able-bodied doctor, but nowhere is this acknowledged in this article–nor is it mentioned in many larger conversations about  painkillers and (possible) ADDICTION!!11.

Most of us who need these medications do not have the energy to doctor-shop. I do not wish to deny that painkiller addiction is a serious problem; it is, for some. Sadly, these sorts of “conversations” on the specter of supposedly widespread PAINKILLER ADDICTION!!!1–much like those focusing on the OBESITY CRISIS!!11–tend to focus entirely too much attention on extreme cases and anecdata, leaving out those who need these medications for legitimate medical reasons, and, I might add, some of whom spend a great portion of time proving said legitimacy in order to show that they are not addicts or doctor-shoppers.

But if “preventing” ADDICTION!11 in able-bodied people via endless hand-wringing about who “really” needs these drugs versus who doesn’t is the number one priority here, that is a problem. Yet again, the needs of those who are judged by society as most “important” or productive or fitting into able-bodied society are taken seriously, and the needs of those who do not fit this mold–because they need painkillers for actual pain and are therefore bad/unproductive/just a bunch of whiners–are ignored, or worse, actively shamed and castigated for things or circumstances that they cannot control.

And, as OuyangDan pointed out so eloquently on this very blog, there are a lot of things that we don’t know about Brittany Murphy’s death. Using her death as a poorly-researched, almost totally speculative “example” of the dangers of painkiller ADDICTION!!11 is not only tasteless, but it distracts from how ridiculously the concerns about painkillers, “legitimacy” and the specter of addiction are often framed by (mostly privileged) people who do not deal with these things in their daily lives.

Less infuriating: Many of the commenters seem to agree that this article and its “speculation” went too far, which is unusual for Salon commenters, as most of them tend to exemplify the worst of privileged white “liberalism” on a regular basis (as you would expect, this includes loads of abled privilege and the anecdata to back up their uninformed opinions).

Disabled & Sick: We’ll Manage

Don has Marfan’s syndrome. It’s a genetic condition that he was born with. It’s the cause of his height (he’s 6’10” tall, 2.09m), his overall build, the way his fingers are shaped. It’s also the cause of his intense chronic pain, his wheelchair use, and his risky heart condition. It’s a spectrum condition – some people don’t have the chronic pain, but do have serious issues with their eyes. Some people don’t know they have Marfan’s until they have an aortic aneurysm and drop dead at 22 with no warning. Don grew up thinking he wouldn’t make it to 25, and his 30th birthday is next month.

Don also has Cancer. His cardiac specialist noticed the lump in his thyroid last year, before his serious ear-related surgery [1. I like to joke about his having too many holes in his head, but it turns out the problems with his mastoid were so bad that he could have died from a brain infection. Don’s health is never having to say you’re exaggerating.], and the whole thing’s been weaving its complicated way through Nova Scotia’s health care system ever since. He had surgery to remove his thyroid in September, with a doctor who assured us not only that there should be no problems with his surgery [2. Don can no longer speak above a whisper.], but that he should fully recover in a week or two.

Don still hasn’t recovered from surgery.

My mental jury is still out on whether or not Cancer is a disability. I think Susan Wendall makes a pretty good argument for it, by talking about how people with Cancer go through both social stigma and a lot of pain of treatment, but I admit to not knowing anyone with Cancer who’s described it as a disability, and I’m big on self-identifying. In this case, though, I’m going with Cancer = sick, because it’s allegedly cured. Everything’s fine now.

Except for the bit where none of the doctors along the way have known how to deal with Don’s disability at all. It’s like they somehow missed “Disability 101” in Doctor School.

We had the doctor who decided to start bending Don’s fingers back with no warning, discussion, or permission, apparently just to see how far they’d bend back. How this is relevant to a thyroid consultation, I don’t know, but Show & Tell Marfan’s Syndrome is pretty shite behaviour when one’s waiting for a Cancer diagnosis. Similar stunts have happened so often – bringing in additional students so they get a chance to “see a classic Marfan’s Patient”, like he’s a specimen in a zoo, or having Don’s classic Marfan’s features pointed out and discussed at length, as though he’s not right there.

The technician who did Don’s chest x-ray (to make sure there were no clots of Cancer in his lungs) baby talked to him, we can only assume because of the wheelchair, since we haven’t been able to get anyone to actually acknowledge that happened, let alone that it was a problem.

When he went in for the ultrasound on his neck… Oh, gosh, where do I begin? With the wheelchair inaccessible waiting room (you can wait in the hall!), or the refusal to allow Don’s wheelchair to even be in the room when he was being examined? As though able-bodied people are asked all the time to leave their only means of getting away behind. Plus, you know, the refusal to believe either of us that it’s common for people to play Show & Tell Marfan’s Syndrome.

And then there’s Doctor Fail. Oh, Doctor Fail, I hate you so much. The fast recovery time you assured us would happen, even when we both emphasized how long it took Don to recover from surgery previously, because he has a chronic pain condition. The bit where you prescribed far too low a dosage of thyroid replacement medication for someone of Don’s size, to the point where his energy levels dipped so badly he couldn’t handle reading fanfic because the plots were too complicated for him to follow, and he couldn’t get out of bed at all. [3. The radiologist increased his dosage to five times the amount. That was weeks ago. He’s still recovering.] Or, hey, the bit where you insisted that all mailed-out appointments needed to be confirmed by phone – despite knowing that Don can’t talk on the phone anymore because of the damage your surgery did to his vocal cords.

The latest round of fail is the radiation therapy he needs in post-Cancer treatment. I don’t even know how to describe the level of care he will need for this. They will need him to come right back off the thyroid meds. They need him to not be within 6 feet of anyone for any length of time. They need him to shower every single day, and then clean the shower out immediately. They need every plate he touches to be washed immediately, and all of his clothing washed immediately after taking it off.

When Don tried to point out that this is not something he can do, even when his thyroid meds are working just fine [4. Don has a homecare worker because normal showering and the like isn’t something he can currently do without aid], the response was a very cheerful “Oh, you’ll manage!”

Y’all, we are not managing. I can’t tell you in words how much we are not managing.

If we were a household of two able-bodied people, these would still be problems, but they wouldn’t be as overwhelming and dangerous as they are. If we were both two people who didn’t have mental health conditions [5. Don has Chronic Depression/Unipolar Disorder something-or-other, and I have a diagnosed mental health condition that I chose to never speak of on the internet because even the comments here at FWD include people who have merrily informed one and all that women with my mental health condition are bad.] this might be a bit less dire than it is. But as it stands, this has become a very very serious problem, and one that the medical people we are dealing with seem completely unable to address at any level, or any point.

The latest, today, was the psychiatrist telling Don to just wait things out and see if the anti-depressant that hasn’t been working for months suddenly kicks in, so the suicidal thoughts and horrible guilt at “what a burden” he is (he’s not!) both go away. Like magic, I guess. Because it’s normal, I guess, to be depressed, disabled, and Cancerous, so we shouldn’t treat it.

Our family has been in a pretty bad state for months now, because of so many people along the way, including us, assuming we’ll manage, somehow.

The support services designed for families ‘dealing with Cancer’ are not designed to include families like ours. Don can’t leave the house much, because it’s winter, and uncleared snow can be a problem. I’ve been so swamped that I’ve been out of the house for 18 hours a day at least four days a week. Support groups and services don’t seem to consider ‘wheelchair’, ‘mental health condition’, ‘complicated family situation’.

And so, here we are. I don’t think this is some tiny crack we’ve managed to slip through, but a big gaping chasm that has a bridge that’s passable only if you’re “general population”.

I honestly don’t know what we’re going to do. I guess we’ll manage.

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.


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.

How to Be a Good Doctor

Update: It was pointed out, correctly, that part of this post contained a statement that made a generalization based on age. That statement has been removed and the post updated with this message. It’s not feminist, and it doesn’t belong here. I’m sorry.

I actually had a really good experience with a physician recently. Like outstanding. With a specialist even — an endocrinologist, so if anyone in the northeast Texas general area needs one, I can recommend him without hesitation. I was kind of nervous; I’d seen an endo before when I was starting my transition but stopped because he was a really huge jerk. (My GP wasn’t entirely comfortable with writing scripts for hormone replacement but has been willing to for a while now. She’s also recommended and trans- and queer-friendly.)

Accessibility was poor to okay: I could have done with a chair by the reception window while waiting for them to copy my ID and insurance card. To get from the curb cut by the reseved parking to the front door, one has to go down the sidewalk across the front of the patio to where the ramp up the patio is. At least three cars were parked so that their noses stuck out over the sidewalk. If you couldn’t squish down to 18″/46cm wide, you couldn’t get through there. The doors were all unpowered and the front doors were on the heavy side. I didn’t see Braille signs at all. There was, blessedly, no music and no TV in the waiting rooms. The exam room was freezing; fortunately for me I’m tall and the ceiling was low and I was able to close the air conditioning vent but that’s not a widely available option. There were wide spaces around the furniture in the waiting room that looked like they’d easily accommodate wheels and other assistive devices. Some of the furniture was squishy but some wasn’t and the non-squishy furniture had arms to push up with.

They got to me right about when my scheduled appointment was. They weighed me, measured my height — 202lbs/91.5kg and 5’11 3/4″ (yes, they really measured me to the quarter inch ((sheesh)) and yeah I’m that tall — people comment constantly on how nice it must be which it kind of is except when I’m trying to buy clothes: for all that they love models my height designers apparently don’t believe women don’t come my size and shop at Target)/182cm — with my boots off, and they did bring me a chair for getting them on and off without my having to ask for one.

We waited in the exam room less than ten minutes. Maybe five. The office had mailed me a new patient packet with all the usual stuff to fill out (and the usual uninclusiveness of gender- and sex-variant people on the form, sigh *tick* F). The doctor apparently had spent the five minutes reading and absorbing it because he came in and introduced himself and greeted the wife and me as Mrs. and Mrs. Brown. It felt really good because NO ONE DOES THIS even the people who know we are legally married. Holy shit. The wife explained that I had an autism spectrum disorder and was not having a good day communication-wise. Also that even though I was not talking much today I was plenty smart (which is a construction I’m unfond of) and could understand doctor jargon (this I’m fine with — it’s a skill, not a definition of a person). He told us that on Mondays he had a resident following him around and would we mind if he joined us for the exam?

I’ve had doctors ask this badly before. Often it’s with said resident already present so refusal is an explicit personal rejection and difficult for even a lot of neurotypical folks, never mind those of us with moderate to severe social anxieties. This doctor asked it with the resident on the other side of a closed door. It really actually felt like I could have said no and it would have been okay.

He liked that I had typed up a list of all my surgeries and meds, the dosages, the schedules for taking them, and what they’re for — it’s a long list, twelve prescription meds total — and expressed sympathy that I needed them all. Even though my wife was helping me communicate, he mostly spoke with and to me. Once when he was looking at his notes he missed that I was nodding in response to his question and he apologized for not watching to see my response. When he was working out what labs to order, he noticed what insurance we had and apologized that we couldn’t use the lab in his office but would have to go to the one (not far away) that our insurance company had a contract with or we’d have to pay for the lab work. A DOCTOR. I’ve never run into one that noticed this stuff before, never mind knew what to do with our insurance company.

In short he seemed to be respectful of all the ways I was different: physically impaired, neurologically variant, queer, trans, everything. And genuinely respectful, too, not in that fake-ass “I don’t see the ways people are different from me” bullshit. [Age-based generalization removed by the author.] It was a really nice part of what’s been a string of mostly crappy days.

I’d really rather not have anything endocrinologically jacked up (and given the pattern of other Stuff that has been tested for, I’m not expecting that anything will be very wrong here either). But if I have to have something like that, I’m glad I know who to go to. ‘cos expertise is one thing. Respect like this — on the first time seeing me, on one of my bad days? — is rare. I wish I could drag all the bad doctors I’ve been to and gritted my teeth through seeing to make them watch this young man do brilliantly with a patient who is admittedly not exactly the most conformative person ever and yell “See? This is how you do it! This is how you make all your patients feel like you care about them.”

Cross-posted at Impermanent Records.

Depending on narcotics

IMG_0172I take six medications. Five of them — the antiepileptic, the antidepressant, the non-narcotic pain killer, the muscle relaxer, and the oral contraceptive — are covered through a mail-order service. I receive a 90-day supply in my mail box every three months. No hassle. If a prescription runs out, my doctor is notified electronically, he then sends the new script electronically, and everything proceeds as normal with absolutely no additional step required of me. The only thing I do is click on the check-out button on the web site every three months. That’s it. No calling. No physical piece of paper to pick up. No wait at a retail pharmacy. Just a click and several days’ wait.

There’s one other medication I take. That medication serves the exact same purpose as all five others: it relieves my pain so that I can get on with my daily functions. I take it regularly, just like all five others. I have been taking it regularly for over five years now for the same reason. But this medication is not covered by the mail order service, because it is not considered a “maintenance medication” — despite that it fills the exact same maintenance role all five others fill, just by a different mechanism.

So for this medication, I am only allowed a 30-day supply at a time, and no refills — a brand new script each fill, which requires my doctor’s input each time. I have to call my doctor no sooner than the exact day it was filled last month, unless it falls on a weekend in which case I might get away with calling up to 2 days early. Then I have to call back a couple days later to see if the script has been written. If it has, it is printed out, and I have to physically walk in to the office, stand in line to see a receptionist, have them take a copy of the script with my photo ID, sign and date the copy, and walk out with the script. Then I have to physically take it into a retail pharmacy, wait in line, hand it to the pharmacy technician, then wait the required time for it to be filled. If there are no problems with my insurance, I then must physically present myself and pay for the prescription. Then I can walk out the door with my medication.

(And this is the process with a doctor who’s relatively friendly about the matter.)

It is quite a different process and one overflowing with “veto points” — points at which any party involved can cause any sort of problem and stop the whole process up. Maybe my doctor is on vacation and won’t be back for two weeks. He is the only one in my clinic who will write this script. I can’t call earlier in anticipation of his absence; they will not write the script before the last runs out. In that case, I’m stuck until he comes back. Maybe the system spits out some sort of error, like the one I received today: I was told the script must be written by my original prescriber. Which is this doctor. So now they have to go back and ask for the script all over again, and he isn’t in til tomorrow, and it’s not guaranteed to go through smoothly then. There have been other errors.

Maybe the insurance says no. For any number of reasons; I’ve dealt with prior authorization errors, quantity limit errors, errors because my insurance has suddenly decided to list me as living in an assisted-living home and cannot fill a prescription if I am. Maybe the pharmacy hits a snag, like the time they would not fill a written prescription until 2 a.m. that night because the insurance company said so, even if we paid out of pocket without billing the insurance.

And I’m going to keep running into these issues, and I will run into new errors every few months. I may have solved the last problem, but there’s always something new to pop up. I can never rely on this medication being filled on-time. It simply does not happen the majority of the time. No matter how diligent I am, how patient I am, how clearly and politely I explain myself — or how despondent I get, how emotional I get when telling them but I cannot work without this medication, and I don’t have leave on this job, and I can’t afford to be fired for missing work. Or whatever other pickle I’m in at the moment. It doesn’t matter. I do everything right and there will still be regular problems in getting my medication filled on time.

I’m sure, by now, you’ve figured out that this particular medication is a narcotic pain killer — hydrocodone (generic for Vicodin). I take it for chronic pain. I have been taking it for over five years this way, with the doses varying between one-and-a-half per day and three per day. And the only medical trouble I have ever had on it is when there was an excessive delay in refill during a bad pain flare and I got to go through the withdrawal for two weeks. (And I can tell you from experience: hydrocodone withdrawal is nothing compared to Effexor withdrawal.)

Narcotic pain killers can be a valid option for chronic pain patients. They fill a void left by other treatments which still aren’t effective enough to address our symptoms, which can easily be disabling. As you can see, I take plenty of other medications. But if I want to be able to get up and do something, I still need the pain relief the hydrocodone provides. So I take it. Because I like to be able to get up and do things. Like make the bed in the morning and feed the cats and make myself lunch and possibly run errands. Or — you know — work. Those silly sorts of things.

Here’s the thing, though. In both common culture and the medical industry, chronic pain patients who take these medications to be able to perform everyday, ordinary tasks that currently-able people take for granted — like bathing or showering or washing dishes or dropping their kids off at school — are still constructed as an addict just looking to get high.

You could almost kind of expect that for the narcotics. Most people do not understand the distinction between addiction and dependence. (Which is, basically, the distinction between taking a medication for a medical purpose so that you can go on living your everyday life, vs. taking a medication when you have no medical need so that you can escape from your everyday life.) This distinction exists for a reason; developing a tolerance for a medication is not a bad thing in and of itself, and must be weighed against the benefits that medications brings to the person.

Addiction calls to mind, though, a life being torn down. Addiction calls to mind a person who is seeing the detriment of a drug outweighing the benefit. A person whose life is falling apart because of the drug.

A chronic pain patient taking a narcotic pain killer under the close supervision and guidance of a knowledgeable doctor is exactly the opposite: sie is a person whose life is coming back together because of the drug.

But this image is not easily shaken in people’s minds. And so the chronic pain patient is reimagined as the addict. Hir behaviors are twisted to fit the common conception of the addict. If sie ever lets out a drop of disappointment at having problems with accessing this medication which is helping to put hir life back together — that is seen as drug-seeking behavior. And if sie lets out any sort of relief at the feeling sie experiences after taking the pill and having the crushing weight lifted from hir muscles — that is seen as “getting a high.” Heaven forbid sie show any emotion beyond just relief — like perhaps pleasure or happiness — at being able to perform everyday functions again. And any moodiness or other undesirable behavior can be easily attributed to hir “addiction.”

What’s strange, I notice, is that this reimagining is applied not only to chronic pain patients who take narcotics — but to any chronic pain patients who takes any pain relieving drug.

Take, for example, the anti-epileptic I take. It is not a narcotic. It cannot be abused — that is, if you do not have a neurological pain disorder, it will not do anything for you. You can’t use it to get high, get low, or get anything — except a couple hundred dollars poorer every month.

The only way this pill does anything for you is if you have some sort of nerve problem. And even then, the effect isn’t a “high.” Rather, it levels your pain threshhold — brings it closer to “normal.” No artificial mood effects, no giddiness, no lift. Just level.

And I still see this medication treated very similarly. Patients who take it are described in the same terms you would describe a drug addict.

And it’s just one of many. Any drug that relieves pain for a person with chronic pain will be painted in the same strokes.

At issue, here, is the conventional wisdom that our pain is imagined, that it has no real basis, or even then that it isn’t as bad as we make it out to be. That is the belief that feeds this twisted construction.

Because if you are imagining your pain, there is nothing legitimate you could be getting out of that drug. And if you aren’t getting anything legitimate out of it, but you’re still taking it — and getting upset when you don’t have it — well, that’s classic addict behavior, isn’t it?

If our pain were recognized as real and legitimate — if those messed-up-in-so-many-ways Lyrica commercials didn’t start out with “My fibromyalgia pain is real!” — this wouldn’t happen as much. Because if our pain is real and legitimate, then it is real and legitimate to seek relief for it.

(Of course, that assumes that pharmaceuticals are accepted as a real and legitimate way to relieve that pain.)

But people are going to have trouble with that. They don’t want to accept our pain. They don’t want to admit that it is real. They want to keep believing that it must be imagined. Because then, they can comfort themselves, in that murky area beneath our conscious thought, that they would never end up in our situation. They could never end up with any sort of medical condition. And if they did, well, they know how to do everything right, so they would never be affected by it.

This is why they scoff at our assertions that our experiences are real. This is why our conditions are jokes to a great many people. This is why “fibromyalgia is bullshit” has been the leading search term to my blog. This is why they seek so desperately to deny that these drugs — any drug — could be having a legitimate effect on us. This is why they treat us like addicts. Because they can see how we might reasonably be having real pain, and they can see how these drugs might reasonably be legitimately relieving it, and they can see how we might reasonably be upset if we are consistently denied access to the one thing that allows us to live our lives the way we want to.

And if all that is reasonable, then — shit — they could wind up in the same place someday. And none of their can-do bootstrap individual determination could magically get them out of it.

Addicts we are, then.

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’.