Tag Archives: health care

Recommended Reading for Wednesday, 1 December 2010

Happy Wednesday, y’all! I can’t believe the (Gregorian) year is almost over. Here are some things I’ve read lately and found interesting; the usual caveats re:comments sections, etc. apply!

Gimps are HOT!: A powerchair user at an ADAPT action holds up a sign saying 'Gimps are hot! Crips are sexy! We want access too!

Photo of a protester at an ADAPT action taken by Flickr user sissyboystud, creative commons license.

C.L. Minou on The Guardian: Comment is free: Trans people are humiliated by healthcare system

Problems getting prescriptions are only the end part of the process. In the US, most doctors won’t prescribe hormones without a patient having undergone a psychological consultation beforehand. At first glance, who would object? Hormones are powerful drugs that cause permanent changes and a screening process should be in place to make sure that you’re competent to make the decision to take them, right?

Joseph Shapiro at NPR News: Olivia Welter, Other Severely Disabled Adults Win Round in Court Battle

Just weeks ago, the Welters thought Olivia’s nurses would walk out the door when she turned 21. But in late October, the family joined a lawsuit filed by the family of another disabled man who had lost services, William Hampe. The state of Illinois then agreed that it would continue the level of services that Olivia had been receiving while the case goes through the courts.

Dahr Jamail at Socialist Worker: Poisoning the Gulf’s residents

“I have pain in my stomach, stabbing pains, in isolated areas,” Rednour added. “The sharp stabbing pain is all over my abdomen where this discoloration is, it’s in my arm pits and around my breasts. I have this dry hacking cough, my sinuses are swelling up, and I have an insatiable thirst.”

Rednour’s recent problems are a continuation of others that have beset her for months, including headaches, respiratory problems, runny nose, nausea and bleeding from the ears.

John Moore at The Denver Post: Oh, the disabled can pack a punch line (note, as you can see from the title, questionable language usage abounds in this piece and it also includes reclamatory uses of slurs like the r-word)

“Like many marginalized and disenfranchised populations, there is reclamation of power that goes with being able to take words that have been used pejoratively and use them to make people laugh,” said Hill. “While I do think the primary purpose of ‘Vox’ is entertainment, it also serves the secondary purpose of advocacy.”

But furthering understanding of the disabled, she said, requires an audience not made up entirely of disabled people.

“Like most movements, if you continue the conversation only among yourselves, you’re not going to get very far,” she said. “Women, for example, can talk about ending sexual violence as much as they want, but until they have as many male comrades in the fight with them, it’s not going to stop.”

Sharon Brennan guest posting at Where’s the Benefit: The Government Is Implicated In Creating Negative Attitudes To Disabled

Clearly there is a negative perception of disabled people in the UK, which can undoubtedly be attributed in part to right-wing media representation of the disabled. The Daily Mail is notorious for this. A recent front page screamed,  “75% of claimants are fit to work“, and carried on: “Tough new benefits test weed out the workshy”.

Accessing Sexual Health Part One: Barriers To Getting There

I gave a bit of a talk recently on what I viewed as the barriers to sexual health and education for people with disabilities, discovering that I have a lot of thoughts about the barriers not only to sexual health but to all levels of health care when one is disabled. These can vary from the difficulties in making appointments to waiting rooms where people who use wheelchairs are told to wait in the hallway.

Sexual health is something that weighs quite heavily on my mind. As we’ve highlighted here (and many other bloggers have highlighted elsewhere), people with disabilities, especially women, are vulnerable to sexual abuse.

Over the next few posts (the other two will be available next week), I wanted to highlight some the barriers I perceive in people with disabilities in getting access to sexual health-related care, and I encourage people of any gender, should they wish, to detail out their own struggles or successes in receiving sexual health care. I would remind commenters, though, that people do search and read comments, and if they wish to give their stories anonymously, that’s perfectly acceptable.

The two things I want to highlight today are getting an appointment, and getting into an appointment.

Over the past couple of months it’s been brought intimately home to me how difficult it can be to get a doctor’s appointment for any reason if you can’t use the phone. I’ve been unable to hear very well due to an ongoing ear infection, and Don has a frozen vocal cord, meaning he cannot speak much above a whisper. Trying to book an appointment to get my ear checked has been an effort in frustration: neither my GP nor the ENT clinic I was referred to have any indication of a way to book an appointment that doesn’t involve using the phone.

When I worked in Health Care I did receive relay calls. For those not familiar, d/Deaf or Hard of Hearing people can use relay calls where they use a TTY phone. They contact the relay center via TTY, and the relay center calls the person you wish to speak to. My understanding is that you then type what you want to say, and the relay operator repeats it to the person who you are talking to. They then type up everything the other person says. (The speaking person says “go ahead” when they want the text-part sent.)

[Interestingly, I only learned how to take Relay Calls when I worked in a call center for a major wireless company in the US. No one when I worked in health care discussed Relay Calls or how to handle them, although in my experience the operators were very kind and forthcoming with that information.]

However, phone issues are not limited in any way to people who may be able to take advantage of Relay Calls. Relay Calls are not appropriate for Don’s needs as someone with a frozen vocal cord, for one example. There are also people with audio processing disorders, people who have phone anxiety issues that make using the phone difficult, if not impossible. There are people whose phone-related issues are temporary rather than permanent and thus they don’t have the equipment available to take advantage of something like Relay Calls. These sorts of barriers to accessing health services, especially sexual health services, can cause people to just give up on the whole enterprise.

One solution to this would be for sexual health clinics and doctors offices to consider making people aware of alternative means of contacting them for appointments, be this via email or fax or even an online appointment booking service. While I have no doubt that these are available currently, I have never seen these services advertised. Certainly when trying to book my ear appointments I would have loved to have done it via email, since I couldn’t hear, which made making the appointment difficult.

Another seemingly simple problem that can be a barrier not only to any health service, but any building at all, is the dreaded Wheelchair Lift.

I mean, let’s pretend that every building you’d want to go to for health services was specifically wheelchair accessible (Note: This is not as true as one might imagine.) In many cases, this will mean a wheelchair lift has been added to one of the stairwells.

As many people who use wheelchairs can tell you, wheelchair access is often “in the back”. This can mean that you need to call ahead to let them know that you’ll be there in five or ten minutes and could someone be troubled to let you in? These doors are not always cleared of snow. The one for one of the buildings that Don’s had to enter doesn’t have a full sidewalk going up to it, so he has to deal with mud when it rains. It rains a lot in Halifax.

However, wheelchair lifts, bless them, do not really help a lot of people with other mobility-related disabilities. You can’t use a wheelchair lift if you use a cane. You can’t use it if you use a walker. Occasionally people in these situations will be allowed to use a chair and sit on it while the lift takes them up the flight of stairs, but this is not always something people are willing to do.

Again, these are physical barriers that prevent people with disabilities from accessing health services. They’re not deliberate, but they have long-term consequences that are easy to forget.

Recommended Reading for November 9, 2010

John Keilman for the Los Angeles Times: Technology opens new horizons for disabled

Yet for all of technology’s promised advances, some worry that the cost will keep helpful devices out of many people’s reach. Others are concerned that governments, schools and institutions might think that high-tech gadgetry has relieved them of their responsibility to serve the disabled.

“Technology is not a solution for every problem,” said Paul Schroeder of the American Foundation for the Blind. “It doesn’t replace the need for quality teaching. It doesn’t replace the need to teach social skills.”

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: Paranoid Schizophrenia: Worst Disease in the World

During the tail end of my psychotic break with reality, I came to believe that there were zombies after me, ready to kill me in order to take over my body. My fear of them taking over my body eventually became so great that I decided to go to the local hospital emergency room, where I thought I would be safe from them.

Liz Sayce at RADAR Network: Health and safety: Stifling disabled people’s independence?

As politicians queue up to cite ever more ludicrous examples of health and safety excesses – making kids wear goggles to play conkers, cancelling historic Gloucestershire cheese rolling events, stopping trainee hairdressers having scissors – those of us living with health conditions or disability sometimes hesitate about which side of this argument we are on.

On the one hand, selected stories like this, designed to justify scrapping regulation, can – as the NASUWT just put it – play politics with children’s safety or put workers at greater risk. On the other, there is a massive history of health and safety being used as an excuse to stop disabled people from doing things. So – whilst I hesitate to join all the people selecting examples of health and safety excesses – we do need to look them in the eye.

Irish Deaf Kids: The Salamanca Statement and EPSEN Act (2004)

A key point:

“regular schools with this inclusive orientation are the most effective means of combating discriminating attitudes, creating welcoming communities, building an inclusive society and achieving education for all; moreover, they provide an effective education to the majority of children and improve the efficiency & ultimately the cost-effectiveness of the entire education system.”

allama at give the feminist a cigarette: Women as sociological ducks

In The Dustbin of History, Greil Marcus warns of the risk of losing sight of individual genius when talking about the blues: yes, it was created in response to slavery and oppression, but centuries of slavery and oppression only produced one Bessie Smith. Seeing Strange Fruit as the inevitable product of the horrors of American history denies the incredible personal achievement of Billie Holiday. And painting female depression as simply a product of the patriarchy denies the personal experience of mental illness to every single sufferer.

incurable hippie at Where’s the Benefit? Round-Up Post

There are plenty of must-read articles and blog posts which I haven’t had the time or the spoons to cover. All of the following are well worth a look.

Recommended Reading for September 14, 2010

Astrid van Woerkom at Astrid’s Journal: “Exercise For Mental Health!”

Bakker forgets the barriers to exercise that some people encounter. Due to the construction going on, I cannot take walks on grounds unaccompanied anymore. I cannot navigate the busy gym during fitness class. If I want to bike, I need to go on a tandem. I cannot participate in my institution’s running therapy program. None of this is due to anxiety. All of it is due to my disabilities, and the barriers to access that stand in the way.

Spilt Milk at Feministe: Fat acceptance: when kindness is activism

Body shame is a great tool of kyriarchy and we often get it from our mothers first, as we learn how bodies can be reduced to a collection of parts and how those parts can be ranked in order of acceptability. Thighs and bums, boobs and upper arms, back-fat and belly-rolls can all be prodded and critiqued, despaired over, disparaged, loathed. This is often a social activity, too. Who doesn’t love normalising misogyny over a cup of tea and a (low calorie) biscuit while the kids play in the next room?

Clarissa at Clarissa’s Blog: Asperger’s: Daily Experiences

As I mentioned earlier, I have “good days” and “bad days.” On bad days, it becomes more difficult to manage my autism, while on good days I make use of a variety of strategies that make it difficult for most people who know me to guess that I am in any way different. In this post, I will describe the techniques I use on my good days, of which today was one. I remind you that my form of Asperger’s is pretty severe, which means that not everybody who has it needs to go through a similar routine.

Cripchick at cripchick’s blog: the politics of mobility

there are so many times when i feel deep resentment for the mobility that (most) nondisabled people our age have. not physical mobility as in moving your arms, but the privilege of being able to move through the world so easily. never having to ask permission. never being dependent on access their support systems provide. never worrying about where they will stay, how they will get around, or who will hire them if they need cash.

Kim Webber at Croakey: How to boost the rural/remote health workforce? It’s not all about the dollars… [via tigtog at Hoyden About Town]

After a year-long consultative effort, the WHO document proposes 16 recommendations on how to improve the recruitment and retention of health workers in underserved areas.  You can see what they are at the bottom of this post (only one of the recommendations relates to financial incentives).

Finally, this week — September 13-19th —  is National Invisible Illness Awareness Week in the U.S. You can find out more by visiting the NIIAW website.

Signal Boost! The Fight For Reproductive Justice

Some of you may know that most of us here are FWD/Forward lurk around at other places doing other things when we are not toiling on the backend here at the humble blog. I happen to spend a bit of my time writing under my actual name over at Change.org’s Women’s Rights blog as the Military Beat Girl.

Two issues involving reproductive justice have passed over my RADAR here and there, and I hope you all will humor me in bringing the issue here to you all, in the hopes that you will give them the appropriate attention, and also in hopes that you might boost them where you have the opportunity.

First: As you may have heard, the U.S. Department of Health and Human Services (HHS) recently decided to pull a Stupak and have collectively taken the decision regarding abortion out of the hands of people who may need to seek coverage in the so-called High Risk Insurance Pools.

[Action Item at the link.]

Basically, it means that, aside from a glaring disregard for women’s health, and no nod whatsoever to the fact that a woman is capable of making decisions about her health care, women who are already medically vulnerable. This rule cuts them off from receiving any abortion coverage whatsoever even if they attempt to pay for it out of their own already strapped pockets.

In short, they do not trust women.

High-risk pools are meant to provide coverage to people who have been denied insurance due to pre-existing conditions, such as cancer, HIV/AIDS, diabetes, and a slew of other chronic illnesses, conditions, disabilities, or diseases. These conditions could make pregnancy potentially harmful, exacerbate the condition, or just plain more stressful to an already stressed body, or even mentally hurtful (though, Obama has made it clear that mental health does not count, eh?).

s.e. smith wrote an excellent post about high-risk pools that I recommend, if like me you don’t fully understand high-risk pools.

Second is a fight that has been dear to my heart for quite some time. It is the ban on abortions in military medical facilities.

[Action Item at the link!]

Illinois Senator Roland Burris introduced an amendment that would repeal the current ban barring women in uniform and military dependent women from procuring abortion services in military facilities, even if they pay for it with their own money except in the case of incest, rape or imminent threat to the woman’s life. The committee approved this amendment and plans to introduce it as part of the Defense Authorization Act.

Currently U.S. military women in countries like Iraq, Afghanistan, Djibouti, and the Republic of Korea (to name a few) are barred from getting abortions by the nature of where they were ordered to go. They are not available in military facilities except in extreme cases, and the the countries where they live have laws against them in most instances. The law discriminates against those women by first ordering them to a country where a service that is safe and legal in the U.S. is inaccessible and then denying them the care they could seek out if stationed there.

Further reading on the military abortion ban.

I now return you to your regularly scheduled reading.

Recommended Reading for 26 August 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Westborough News: Marines shoot calendar for male breast cancer research

They are the few. The proud part has been a bit more of a struggle.

“Most guys don’t want to reach out, don’t want to tell anyone they’ve got a woman’s disease,” Pete Devereaux said yesterday as he talked with fellow male Marines who’ve been diagnosed with breast cancer.

INCITE! Blog: Reflections from Detroit: Reflections On An Opening: Disability Justice and Creating Collective Access in Detroit

We would not just think about disability as separate from class, age, race, queerness, family, children, gender, citizenship, violence, but we would understand it as intimately connected.  We would think, not just about “conference and workshop time,” but we would also think about social time and what social spaces were accessible and how we would make sure no one was isolated or left out.  Because in our movements much of the relationship building, socializing and bonding is done in very inaccessible ways in very inaccessible places—we know this all too well.

New York Times: When Battlefield Humor Backfires (Extra Trigger Warning)

And so the doctor’s determination not to lose a contest of wills undermines the opportunity to have successful discussions about treatment. The patient instantly senses that the doctor distrusts and dislikes him, and this, coupled with the patient’s lack of respect toward authority figures, leads to a rapidly deteriorating situation, often ending in a discharge against medical advice — much to the team’s relief.

NPR: Administration To Appeal Ruling in Stem-Cell Case

The Justice Department said an appeal is expected this week of the federal judge’s preliminary injunction that disrupted an entire field of science.

Judge Royce Lamberth on Monday threw the research community into disarray when he said a federal law invalidated Obama administration guidelines on human-stem-cell research. He concluded that two researchers challenging the Obama stem-cell policy stood a good chance of success as the case moved ahead in the courts.

The judge said any scientific projects using human embryos required their destruction, which flouts a longstanding federal law.

Something More Than Sides: Dear Doctor: Actually, I *Am* Sick

Let’s completely ignore the actual health concerns in exchange for shaming a young girl. Classy. And let’s not forget the fact that, were I suffering from an eating disorder, this is not the way to broach the subject. I left that appointment feeling shamed and humiliated, and with no answers.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

…And At This Point, I Don’t See It Stopping Anytime Soon

Courtesy of amandaw I bring you this stellar article that once again rubs in my face how brilliantly miserable the VA is scratching the surface of realizing what is wrong with they way they even see women veterans. If you read along carefully you can even see the lightly sugar-coated condescension artfully woven in TIME writer Laura Fitzpatrick’s story. It really is a piece of work, from the dismissive way she re-counts the testimony of the “presumed” treatment of a victim survivor of sexual assault at the hands of a medical professional (because they NEVER do THAT) down to the detailed description of the very girlie attire of the staff at the impressively mostly women-run facility in Palo Alto. I crave to read the way a man’s shoes click-clack on a hospital hall’s floors in such a manner. But it is a very cliche description etched in the halls of descriptive-writing history, INORITE, so who am I to argue with the laws of good writing. I am, after all, only an amateur.

The news isn’t that the VA is failing women veterans. I’ve known that for quite some time. Really, I have. I have encountered some of the treatment described to some degrees first-hand:

I remember having to hunt around for a toilet in an ill-fitting paper gown at my own exit screening, past several other open, occupied exam rooms. I was the only woman there. They had no sanitary napkin to offer me and it was an embarrassing scene trying to find a place where I could insert a tampon. I was fighting back tears when I finally found a (presumably) unisex bathroom.

So My Dear Friend Ms. Fitzpatrick’s dismissal of Anuradha Bhagwati’s story, the one she gave as testimony before the House Committee on Veterans’ Affairs is ill-received. It isn’t too far-fetched for me to imagine the way she recounts “the ham-handed manner in which a male gynecologist, upon being told by a patient that she had been sexually assaulted, left the exam room and — presumably to beckon a female staff member — yelled down the hall, ‘We’ve got another one!'”. I can easily see the inept professionals at the inadequate facilities just stumbling over how to even grasp a way to provide basic courtesy to a patient who isn’t like them. And failing. Miserably.

The news here is that they seem to have no idea how to fix it, and no set, immediate time line in mind for seeing progress. Sure, Secretary of the VA, Eric K. Shinseki recently, at a forum at the Women in Military Service for America Memorial in Arlington, Virginia, has said that he hopes to have the VA ready to serve 100% of veterans in 25 years, but what is going to happen to this generation of women veterans who are already being ignored? To the women veterans of the wars past who have been fighting for help all along already?

Because their concerns are already being swept aside. You can already see as things like their urinary-tract issues being categorized as simple “gender differences”, because women react to the desert differently. Sure, possibly. I’ve seen this intimated a few times. People looking to explain away womanly behavior in high stress situations. Oh! They didn’t want to stop the convoy! Well, why is that? Maybe because we know that women are far more likely to be killed by their fellow servicemembers than by combat in combat zones that they learned defense mechanisms, as confessed to by Col. Janis Karpinski. Women tended to drink less water, as little as they thought they could get away with, to avoid using latrines or having to stop roadside alone with men out of fear of sexual assault. And it killed some of them. If you remember, though, Karpinski was even dismissed as a woman scorned because of the Abu Ghraib scandal, anyhow, so we can’t win for losing. She was just ratting out her old boss because she got in trouble.

Some of it is true, though. Most of the VA’s 144 hospitals do not have the proper facilities to even offer privacy to non-men patients, let alone provide gynecological care, or as I mentioned above, pads. The TIME article notes a hospital in Salt Lake City which announced that it delivered its first baby this past October (the article mentions that its average patient is 78 and male), but the day after the little girl’s arrival they didn’t know how much she weighed (I cringe to think how much more they couldn’t provide) because they didn’t even have an infant scale.

Women veterans are spiking in numbers. They, funnily enough, are not the same as men. That means they are not the same as the average patient, such as that the Salt Lake City hospital are used to dealing with, and their health care with be different. Even if you line up the matching parts, the treatment for heart disease and blood pressure, to my lay knowledge, is not the same. The numbers have been growing since The Great War, and surged after we had the need to call the next one World War II. It took until 1988 for the VA to start providing even limited care to women veterans.

Today, women veterans in need of help from the VA are of an average age far younger than the average male veteran (for obvious reasons) and have different needs. They are at least twice as likely than civilian women to be homeless (with only 8 facilities in all the U.S. available to help homeless women veterans with children). They are likely to be mothers when they are. Many of them returning from combat zones — yes, combat zones, why do you ask? — are coming home to families and are more likely than their male counterparts to get divorced following combat connected tours. They are really damned likely to get asked if that is their husband’s or boyfriend’s shirt they are wearing, or asked for their husband’s social by a thoughtless agent on the phone. They are the forgotten in war. Doubly so if they served in a branch of the military that isn’t on the forefront of the public’s mind as “really the military” (as slave2tehtink has said, Aircraft carriers tend to not be zipped around by civilians, yo). Extra-specially so if you had a thinkin’ job, like “nuke” or “spook”, and your Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), or Military Sexual Trauma (MST) didn’t happen “In Country” (Iraq or Afghanistan), the only sanctioned places where these things can occur, you know.

It’s frustrating as hell. And while I don’t believe that the VA is intentionally forgetting about us, I don’t believe that they are doing everything that they can to make sure that it gets better faster.

And honestly, I don’t think writers like Ms. Fitzpatrick are helping. But maybe I am jaded and have been at this for too long. But the VA needs an overhaul, stat. Pretty words from the Secretary of the VA and promises that it will be better in a couple of decades just aren’t good enough.

Military Docs Treat Pain in New Ways and Shame in All the Old Ways

Gentle readers! I know! I am going to worsen my hernia by reading this stuff every day! I can’t help myself! It’s like tearing myself away from a Star Wars Marathon and a free case of Guinness and Harp on New Years Eve Back when I was child free and in college! Did you ever hear about that drinking game?

Because what I really need right now is more news pounding home just how EEEEEVIIIIL drugs are and how in danger some of us are of becoming dependent on them!

Especially, WOES! Those poor servicemembers, because they would never ever have a reason to use them. Not with an almost decade of war going on in two countries and the highest rate of PTSD, suicide, TBI, and other things we have ever seen in our troops before.

Now, let me slow down for a moment, because there are some really good things going on here. This nerve blocking thing sounds pretty awesome, but I am not a medical professional of any type unless you were going by the number of dram bottles I have on hand. While I have a lot of not-so-nice things to say about the already “pins and needles” feelings in my hands and feet, I will take that in other parts of my body over what I deal with now thats-for-damned-sure. But the juxtaposition of a new therapy with the whole “drugs are bad, mmmm’kay” meme is wearing on my last pain free nerve. The shaming of opiate use is tired and older than my favorite period underwear.

As more troops return from the battlefield with chronic pain, the military has seen a spike in the number of prescriptions for opiate painkillers. More troubling, abuse of painkillers is on the rise: About 22 percent of soldiers admitted misusing prescribed drugs, mostly painkillers, in a 12-month period, according to the results of a Pentagon survey released this year.

So, how did their magical survey define “misusing”? Taking more than prescribed? One more? Two more? Because you were in MORE pain than that prescribed amount of pain managed and you were having trouble getting an appointment with your PCM to get the dosage adjusted or any other treatment? Anything beyond precisely what is on the label is “misusing” a prescription. The military has an entire month devoted to prescription drug abuse awareness…but what they don’t do much to address is the underlying need that might cause servicemembers to resort to such a thing; the fact that they might be in pain and they might not have doctors paying attention or being able to pay enough attention to them or their pain.

At the VA hospital in Tampa, all patients taking painkillers are incrementally tapered off them, Clark said.

Because chronic pain never completely goes away, the hospital’s staff emphasizes physical rehabilitation to strengthen muscles and joints near the pain source. When the injury involves the brain — as in PTSD and mild TBIs — the focus is on treating symptoms that could exacerbate pain.

“Pain may make it more difficult to treat those issues,” Clark said, because “all these things interact.”

But what about the remaining pain? The article never goes on to address what is done for that remaining chronic pain. You know, the pain that never goes away. Because we know that just sucking it up doesn’t work in patients who have chronic pain, and if all patients on painkillers are taken off of them over time…well then, what the hell is actually being done?

This new treatment sounds great for the people to whom it is available, and for the people for whom it will work, but let’s not jump ahead of ourselves and pat ourselves on the backs pretending that this is some magical solution that has suddenly rid us of the need for those nasty opiates or narcotics that are JUST. SO. BAD. FOR. EVERYONE. (You fucking addicts! I mean, c’mon, you were all thinking it!) (Right?) Dr. White is one of only six doctors who do what he does, and the article doesn’t say that the others offer his fancy treatment, nor does the article make any mention of how many civilian specialists are working on this treatment.

I worry that the VA and other military treatment facilities will look at this as a sign that they should be able to deny more patients painkillers. Progress will mean exactly nothing if it sacrifices patient care or hinders the quality of life of patients in chronic pain and with life-long illness and injury. While this article correctly talks about how chronic pain is processed differently by the brain not every uniformed doctor and military medical professional subscribes to that theory, and what the military doesn’t need right now is more doctors, medical professionals, or hospitals bragging about how all of their patients are off those evil, bad, no good drugs without offering them real help.

How Many Straws?

A blue and white lane-marking buoy in a swimming pool.I know that I am not 18 any more.

One of my doctors kindly pointed that out to me recently.

What I mean is that I can no longer demand of my body what I once did. And I know this, as I embrace the things that come with years gone by. Aging is a complicated issue for me, emotionally charged and not something I am willing to discuss right now, but it is important to note that this post is not about aging. It is, however, about the way my body has worn down due to my disability.

When I was 18 I drilled endlessly on the U.S. style football fields, with the careful precision that four years of training an 8-to-5 step — that being my ability to march exactly eight steps in five yards to whatever beat you set for me — will ingrain into a person. I was able (and expected) to teach others under me to do the same all while playing the horn. To this day I can not hear most music without at least tapping my foot. Emerson, Lake, & Palmer’s “Karn Evil 9” will actually cause me to hum along wistfully. Later I did the same at University. Anyone who participated in University Marching Band at Eastern Michigan University can tell you that marching band was not something you just did, but rather worded at, and I worked hard. Hauling that tuba around during pregame was no easy feat. There was a reason music majors received PE credit for marching band.

Before I was diagnosed I was a runner. When I was 18 I had pounded out miles on the track and on mapped out road routes in order to get into the condition I needed to race for years. I was able to sprint out the eleven or thirteen steps, whichever felt right, to take me to the high jump pit and sail over the bar. I wasn’t amazing, but I had determination to demand it from myself. I ran in high school, and I hated it. I loathed it. I had clever names for the malevolent task-masters whom I called Coaches that I went to voluntarily every day after school and asked for work out schedules and whose hands I shook afterwards.

I ran before, during and after my pregnancy (when I wasn’t throwing up), cussing myself out the whole time. I ran in Navy boot camp, filling myself with the urge and the desire to do well. I hated every moment, but loved the feeling of feet on pavement even as my shins cried out in pain. I filled myself with the desire to go one step further, two, one mile, two, as I shoved tears out of me to replace the pain that filled my body (and I usually peed my pants a little at some point, but that is another story).

Eventually the shin pain became a lot worse. It was massive, and no amount of ice or ibuprofin was going to alleviate it. A bone scan later and some Tolkein-esque blathering you don’t care about and I am told I can never run again. Sure, the Navy loved that. I couldn’t get a chit to back it up w/o getting kicked out earlier than I already did, so I had to go back every 45 days or so to get a new one, and I had to be very sure it was a nice sailor-doctor who signed it, because the Fitness Enhancement people were not going to take anything signed by anyone who was a civilian or any other branch of the military regardless of what degrees they had on the wall. So, running was right out, and they weren’t making it easy for me to, well, take care of me.

I became a swimmer, and I was fantastic at it. I probably knew this deep down, having been a natural swimmer since before I could walk. Had anyone told me that I could swim as an option to running in the Navy sooner I would have. I swam thousands of meters a day, until I was exhausted (trying not to notice that my body was telling me this was sooner and sooner each day). I would do kick turns through migraines that were getting more and more fierce despite the amount of over-the-counter meds I was pounding. Go figure. My Fitness Test scores went from Good/Low to Excellent/High.

Until my abdominal muscles gave out.

I finally pulled something doing sit-ups. I went from doing in the high 60’s to barely being able to do the 35 that was required to pass for my age group pretty much overnight. I would get to 15 and the pain would make me yell out it was so sharp. I could almost clock it, too. Of course sit-ups were always first, and this made push-ups impossible. I couldn’t even do the simple 15 I needed to pass. My doctor felt around, and determined that core exercises were out for fitness tests. I was to do them only at my own pace or with a doctor in physical therapy.

Finally the headaches were bad enough that it was too much and my swimming was scaled back. My exercise was restricted so much that I was barely allowed to do 30 minutes a day. I was still not receiving any pain medication other than anti-depressants, which were not working for me. I started seeing a chiropractor, and doing yoga, which I was told was not a “real” workout, but would count for my weekly number of workouts anyway. Even then I couldn’t do a full class because I was in too much pain.

Still, as I gained weight, cornered in by pain and now stuck in a body that wasn’t allowed to move anymore, my new doctors (because they were always changing) said that I just needed to lose weight, if only I would watch my diet and include more exercise into my daily routine, which by now was only limited to half days of work due to pain and 15 minutes of exercise by my chiropractor and PCM, and Hey! How about seeing a dietician?

After my discharge, when my second career choice was unceremoniously ended with me handing over my ID card, I finally settled into a place where I stopped hating my body so much (OK, you got me, I’m still working on it). I am finally on a pain management regimen, I do light exercise as the pain permits, and my body is stable at a weight that hasn’t fluxed one way or the other for a few years now. I had to give some things up (drinking alcohol any more than a few sips being the one that comes to mind mostly) because of those medications. But all of this aside, I have tried to take care of myself. I have followed what doctors have told me to do, I didn’t smoke, I tried to eat right, I wore sunscreen…I even eat very little meat, having been an on again/off again vegetarian. I know that these are not hard and fast actual things that guarantee health, they are just things that I have always followed because some doctor or dietician or another has advised me blah blibitty blah… What I mean is that I have very few of what people generally consider vices.

Recently I had some issues where I have been vomiting in my mouth, acid reflux, heart burn, all kinds of fun stuff. They gave me a nice, handy laundry list of things I need to give up in order to help alleviate the symptoms now that they have prodded around my duodendum with a camera.

Things like coffee, and chocolate, and anything spicy (or tomato-based in general), which are three of my favorite things. All citrus foods are right out, which I expected, but they snuck in things that surprised me, like mint and mint flavoured things, which took half of my herbal teas out as well. Finally, I find myself with no vices if I am to follow all of the doctorly advice to maintaining my health.

Let me tell you that I have not been a pleasant person to be around lately. I depend on that Super Human tolerance for things like caffeine and chocolate (sometimes at the same time!) to fuel things like my snark and ability to write 2,000+ word blogs posts. I have sustained myself on coffee and little else at times. It is often the centerpiece of friendly chats and family gatherings.

It leaves me to wonder, how many straws do we lose before we say “that’s the last one? I can’t take any more!”?

What lines do we draw when we get all of that medical advice, when things that we enjoy or that we once did have been stripped away from us one by one, to balance a quality of life for ourselves so we don’t sit around stewing about what we can or can’t do anymore, and to make sure that we do actually pay attention to the call of our bodies as they try to tell us something (if they do send us signals at all)? Where do we draw the lines between telling our bodies to piss off because we need that comfort, that thing that helps us get through the day when we feel like everything else has been taken from us?

Or am I making mountains out of molehills here?

Photo credit: ashleigh290

Recommended reading for May 4, 2010

RMJ: Disability and birth control, part 1

Widespread (rather than individual) centralization of birth control in feminism alienates and marginalizes their already problematized bodies: trans women, intersex women, older women, women with disabilities that affect their reproductive system, asexual women, women who want to get pregnant. Not to mention the loaded history of otherwise non-privileged bodies with birth control in light of the eugenics movement.

Eugenia: Siempre eqivocada

The fact is that, with regards to medical care, the old customer service adage is reversed: if the customer is always right, in Bolivia, the patient is always wrong. In Bolivia, where higher education is less of a universal right than a luxury for the few, poorer, uneducated Bolivians are taught to treat doctors and other professionals as their superiors.

meowser: BADD 2010: The Total Erasure of Partial Disability

In order to “make it” at anything I thought was worth doing, you had to be willing to do some serious OT, put in the extra time, go the extra mile, get that extra degree while still working full-time, put your nose to the grindstone. In other words, prove you weren’t just some lazy slacker who didn’t want to work. And I knew I…just couldn’t. And I felt terrible about that, especially when I got into my 30s and realized that all those overworked, underpaid copy editors (and other people who had done the nose-to-the-grindstone thing) now had real careers making real money, and I was still stuck at the McJob level.

Jha: My Invisible Disability

My depression is a setback. It means I cannot be continuously gung-ho about things like I would like to be. It means that sometimes I have to withdraw from the world or be overcome with exhaustion. I am easily fatigued. Some days, I want to sleep in the entire day and not have to face the world. Other times, I imagine being in a situation where I wouldn’t have a tomorrow to deal with. This doesn’t make me a failure, and it doesn’t make me, or anybody else like me, any less of a person deserving basic respect and consideration.

Latoya: Open Thread: Science, Conclusions, and Assumptions

[O]ne of the most common requests for content on Racialicious tends to come from people who work in public health. One issue in particular they have asked me to spotlight is the issue of clinical trials. For many years, the assumption was that the effects of medical conditions and medicine side effects would be similar on everyone, even though the only people involved in clinical trials were white males.

Valerie Ulene (Los Angeles Times): When prescribing a drug, doctors have many choices — too many, in some cases

Nobody wants to be told that he or she has a medical problem that can’t be treated, that there’s no medication that will help. For most common ailments, that’s rarely a problem; the trouble comes instead when it’s time to choose a drug. Sometimes there are just too many choices.

And, of course, there are numerous posts from BADD 2010, organized and collected by Goldfish at Diary of a Goldfish!