Tag Archives: chronic pain conditions

Recommended Reading for July 13, 2010

Problem Chylde at Feministe: Storytelling as a Radical Act

They won’t speak out for fear of losing something: losing a relative, losing control of their lives, or losing their stories. To them, it’s not a myth that their stories will be repeated without their names to guide them. Anyone can pick up a textbook and read case studies about H, a 26-year-old African-American woman from X with cerebral palsy, or see pictures of happy smiling children online referred to as “happy smiling children in the Y mountains/Z desert/Q farmland.” These people — their bodies, their plight, their stories — are Other. No names in the street, in the book, in the mind, and people only recently have been asking why they are nameless.

Jeannine Stein, Los Angeles Times: Movement therapies may reduce chronic pain

Movement-based therapies such as yoga, tai chi, qigong and more mainstream forms of exercise are gaining acceptance in the world of chronic pain management. Many pain clinics and integrative medicine centers now offer movement-based therapy for pain caused by cancer and cancer treatments, rheumatoid arthritis, fibromyalgia, multiple sclerosis, and other diseases and conditions.

lisa at Sociological Images: Norms, Normality and Normativity

Sociologists distinguish between the terms “norm,” “normal,” and “normative.”

The norm refers to what is common or frequent.  For example, for Christian Americans, celebrating Christmas is the norm.

Normal is opposed to abnormal.  Even though celebrating Christmas is the norm, it is not abnormal to celebrate Hanukkah.  To celebrate Hanukkah is perfectly normal.

In contrast to both of these, normative refers to a morally-endorsed ideal. . .

Wheelchair Dancer: Equivalencies:Days 2 and 3

We use equivalent to suggest that two separate and often very different things are the same, or, at least, of equal value. But the very insistence on equivalence underscores the potential for the thing that is being compared to be somehow less than the original. Rather than “same but different,” it’s more “different but same.” My mind jumps to “separate but equal.”

Recommended reading for June 8, 2010

Becky CK at Happy Bodies: Why do we apologize for our bodies?

Why do feel the need to apologize for our bodies’ needs and justify the choices we make about them? As I continue to incorporate body positivity into my life, I still find myself listing off what I ate all day to justify why I’m hungry now, or explaining, in detail, what made me so tired that  I need a nap.

IrrationalPoint at Modus dopens: The “what-it-is-like-ness”

Sometimes people, usually neurotypical people with no sensory impairments, don’t use these, almost invariably because it looks ok to them. They can read it, so they don’t understand that other people won’t be able to.

Cara at The Curvature: Rape Victims Tell of Mistreatment by the NYPD [Trigger warning for discussion of sexual assault]

And while all of the details of these women’s identities are not disclosed (and thus any or all of the following issues may have in fact applied to their stories), the accounts do not even begin to explicitly discuss the brutal and specific challenges faced by victims who are of color, trans*, disabled, poor, queer, and/or sex workers, due to the prejudicial hierarchies regarding who are “real” victims of sexual assault.

staticnonsense at I Am Not: “Exceptionally Creative”

Someone I know recently made the claim that Schizophrenia and “exceptional creativity” are “practically the same”.

This stems from a very common misconception that I see, regarding the understanding of Schizophrenia and other schizotypal spectrum disorders (Schizotypal Personality Disorder, Schizoid Personality Disorder, Paraoid Personality Disorder and in some cases Schizoaffective Disorder). Specifically, stemming from ignoring the negative effects it can have on ones life in favor of the positive, in order to try to paint the spectrum as nothing but shiny rainbows and glitter.

thingsimreading on Tumblr: i remain forever confused…

i remain forever confused by people who are condescending, derailing and offensive but think because they said it all in a “nice way” that the fault lies with the person who points out what was hurtful in what they said/wrote.

Adrienne Dellwo at About.com’s Guide to Fibromyalgia and CFS: New Diagnostic Criteria For Fibromyalgia

Until we have a diagnostic test that’s based on blood markers or imaging, we probably won’t have a perfect diagnostic test.  (This is true of many diseases, especially neurological ones.)  Still, researchers believe they’ve come up with something that works better — they say when the looked at a group of previously diagnosed fibromyalgia patients, the tender-point exam was about 75% accurate, while their criteria caught it 88% of the time.

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

An OYD Airline Rant

I won’t apologize for her actions and I’m not sorry for what happened to you. It’s not in our contract to assist passengers with their luggage and we reserve the right to refuse assistance to anyone. If that’s what you need, then perhaps in the future, you should make other travel arrangements.

Well, to say the least, that is not the kind of response I expect to get from a customer service representative; not the Entry Level Line Memorizing Oh Dammit Did You Really Ask For A Supervisor people, and I certainly don’t expect it from a supervisor. Were I to get such a resonse I would certainly suspect that something slightly sinister was going on here at said establishment where I was complaining. After all, if I am speaking to a Customer Service Supervisor, things have reached a fairly epic proportion of shit deep inconvenience, because I pretty much go out of my anxiety issue way to avoid having conversations with people I don’t know in person (let alone on the phone). Because I have to weigh the cost of spoons spent on holding myself together long enough to get out the details of what happened, as I did recently with my complaint to Patient Admin about Nurse Midwife V, versus the benefit of getting shit cleared up so it doesn’t happen again to other people who may follow after me and patronize a company, needing services, like in this case, travel.

But here, this is exactly the case. Here, evilpuppy from Incoherent Ramblings From a Coffee Addict, who, expending great energy, spoons, and emotional well being tried to file a complaint on the completely despicable treatment doled out by the staff at United Airlines, and received this condescending and otherwise completely, well, jack-assed and ignorant response from someone who should have a working knowledge of how an employee on an airplane should treat a person with a disability. Not in an email response or even in a letter form; this response was delivered face to face. All of this after she already went to the trouble of pre-arranging accommodations for a wheelchair and made sure to note with the ticket agents — multiple times — that she would need assistance on the plane.

Just a small dose of what evilpuppy endured:

The wheelchair left me off at the door and after making sure I had all of my belongings, he turned around and left. I boarded the plane and made my way back to my aisle seat where I set down my special seat cushion and lumbar brace before looking around for a flight attendant to help me put my luggage in the overhead compartment. 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.” When I asked what would happen if no one would, her response to me was: “Well, normally a passenger is around to overhear something like this and they’ll offer to help with it on their own. You’ll just have to ask someone when they get back here.” Then she turned back around and went up to the front seats where she waited to “assist” other passengers.

I was completely flabbergasted, but with no other option, I sat down to wait and pulled my carry-on suitcase as close as I could to try to get it out of the way of the aisle. As I’m sure you’re aware, however, your aisles are considerably narrow and even my best efforts left half of even my small carry-on suitcase in the aisle. What’s more, rather than help me, most of the passengers simply knocked into my suitcase and shoved past me on the way to their own seats. Every time they hit the suitcase, it in turn hit me and jarred my back more and more with each strike. The plane wasn’t even half boarded and it already felt like the pain medication I’d taken less than a half hour prior to entering the airport had worn off as though I hadn’t taken it at all.

Now, I have endured some pretty meh-hessed treatment at the hands of customer service personnel. I have seen other people treated pretty horribly. I have had my disability status questioned, rejected, laughed off. I have had it compared to the fatigue of being a stay at home mother of two children (I am not downplaying the work of SAHMs, having once been one myself, but these are apples and well NOT APPLES!), and of course DIET AND EXERCISE! but never have I had someone so flatly refuse to acknowledge that 1) their co-worker/staff/employee so royally screwed up and 2) that their co-worker/staff/employee’s royal screw up really fucked my world up and over in a way that might just have rendered my next few days useless, since that might mean that I will then be spending the next two or three or more days in bed or on a couch with my feet up trying to recover from the aforementioned loss of spoons and emotional well being.

To put it concisely: Wow. That is messed up.

Not to mention, I am not sure I have ever patronized any business where it was standard procedure for other paying customers to assist a person in lieu of the paid employees who are standing around. It just seems lately that airlines are giving me more and more reasons to not give them more money than I can afford to basically be treated like crap.

I have never been told that it wasn’t the job of the person whose actual job it was to help me.

OOPS! UNITED STEWARDESSES! ITS LIKE TOTES YOUR JOB!

Once passengers are onboard the aircraft, our flight attendants can help with stowing and retrieving carry-on items, as well as providing wheelchair assistance to move passengers to and from the aircraft lavatory (although they cannot provide assistance inside the lavatory). Flight attendants may also provide assistance with taking oral medication, identifying food items on meal trays and opening packages.

Is there a single airline that isn’t treating humans like chattel these days? That isn’t outright pissing me off for one reason or another (well, Korean Air hasn’t yet, but I haven’t flown International since the Christmas debacle). I am beginning to think I will need to take a boat to get home the next time. And Space A military flights are a privilege I am willing flex more and more if I have the time and pain medication available. It might be worth it to not be herded on and off a plane like cattle, denied bathroom and water privileges for hours on end (which can be living hell to a PWD).

Oh, and also:

Then the flight is delayed. We sit on the runway for some time, and because of the new federal law requiring that airlines not keep people on the tarmac for more than 3 hours, they let us off for about 5 minutes before insisting we all get back on because we are leaving right now. We do not leave right now, or for several more hours. They let us off the plane again. Shortly thereafter, they insist that we all get back on the plane because we are leaving right now. We do not leave right now.

At some point after the second or third round of boarding and being told to sit down because we are leaving right now, a man towards the back of the plane stands up to get himself a cup of water. For context, this flight is (or was supposed to be) a 7:40 a.m. flight from Atlanta to New York, landing around 9 a.m. It is full of (mostly white) business people in suits. This man is brown, and appears to be South Asian. A flight attendant at the front of the plane, near where I’m sitting, sees him stand up and panics. She throws open the airplane door and starts yelling at him that he isn’t allowed to stand up, and that he needs to exit the plane immediately. The man is confused, and says, “What? I was only standing up to get a cup of water.” She yells out, “I don’t care, you’re off the flight! Get your things, you’re off the flight!” Water Man starts arguing with her about how he just wanted a glass of water, and he is happy to sit down now, but he’s not getting off the flight. The flight attendant says that she feels threatened and gets a supervisor, who in turn gets airport security, who in turn tell the man that he is going to be arrested and charged with a felony if he does not exit the aircraft. The man, probably smartly, exits the aircraft.

Like Jill passes over in her rant here, with all the hype of racial profiling being trendy, if you assert your right to a simple thing like a drink of fucking water while daring to be brown you can be thrown off of a flight.

Thankfully The Consumerist has picked up on this (although “who says she’s disabled”? Could we pour more salt on this?). I am not entirely sure how much good this does things like this, except that I give them all kinds of link love on Facebook when I find something relevant, so maybe this went viral? I would however, like to point out that the comments at The Consumerist are some of the worst disability blaming shite I have seen in a while (and it shows how safe my social justice bubble is). It seems that we, the PWDs, should not dare to carry on a bag if we a) need a wheelchair to get on a plane b) can’t lift it ourselves and c) have the audacity to want to be treated JUST LIKE EVERYONE ELSE ON A PLANE. Also, don’t forget, if you take pain medication, and/or dare to have a drink on the plane to settle your anxiety you are not to be believed when you make claims as to the crappy ass treatment you received. Nope.

Because there is no way in the entirety of the multiverse that you would ever remember something as abusive or as hurtful or as downright dehumanizing as what Dina the Customer Service Supervisor at SFO said to you, for the rest of your life, or how it made you feel at that moment in dog damned time. Evah.

PWDs are not human. We are not people who should be existing in the same world with those good, hard working, abled-bodied people who can do everything themselves. To hell with us, for not being able to lift our bags! Forget that we just maybe had to scrape together all the money we had to afford the damned flight in the first place so that extra twenty five dollars is NO BIG DEAL JUST CHECK YOUR DAMNED BAG YOU LAZY STONED JERKS!

Silly me for expecting human treatment for all humans.

Via commenter Livre at The Consumerist, United is apparently attempting to contact (or has, I am looking into it) in true “Oh Snap Kevin Smith Has One Million Twitter Followers DOOOOOO SOOOOOMETHING” fashion to try and do damage control sort this out.

Sort this out? That would be something, now, wouldn’t it?

h/t to my friend Kate on Facebook

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.

/sarcasm.

*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.

A Conversation With a Pharmacist

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

Army Medic Pharmacist: One moment.

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

[AMP returns with the Civilian Pharmacist]

Civilian Pharmacist: You have taken pregabalin with topamax before?

Me: Yes.

CP: What about this antacid?

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

CP: Yes.

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

Me: There should be a third script.

CP: No, only the two.

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

[CP raises her eyebrows at me]

CP: You are on pregabalin.

Me: Yes.

CP: That is a time released pain medication.

Me: Yes ma’am.

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

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

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

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

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

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

Fin.

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.

OH MY GOD, EVERYBODY PANIC.

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).

Recommended Reading for November 25

On Living with Pain and Taking Care of One’s Self

I have been managing my chronic pain and taking care of myself for years. But taking care of myself requires the cooperation of other people, and that can be the most difficult challenge to overcome. I cannot take care of myself or be well if others do not take my pain seriously. Just because I was able to do X yesterday does not mean I can do it today. The pain comes and goes. Once it starts I have to let it take its course. But society caters to people who are able-bodied and physically strong. Illness and pain are not compatible with the typical pace of life, and I admit I have anxiety about falling behind.

Living with an invisible disability can be exhausting – not only because chronic, searing pain is energy-draining (in my case), but because it leaves behind no evidence. Communicating with others about my pain often leaves me feeling misunderstood and isolated. Sometimes I want to wear tops that reveal my scar all the time, in order to silently “prove” there’s a *real* reason I just want to lie down, can’t carry that ten pound box, or don’t want to stay out all night partying. I cannot shake the feeling that other people doubt me or believe I use chronic pain as an excuse to get out of doing certain things.

Insurance Company Revokes Depressed Woman’s benefits over Facebook photos

Mental illness is no exception to this rule: people think they know what it looks like, that they can spot a person with a mental illness a mile away, and that if a person doesn’t live up to those expectations, they’re either seeking benefits they “don’t deserve,” or seeking attention. And with regards to depression specifically (as it’s the topic of the original article, and my greatest knowledge base), they tend to think that if someone isn’t spending all of their time crying, frowning, or refusing to get out of bed, they can’t possibly have it.

Your Scooter Means You’re Poor

I have learned that differently abled means poor to many. It means that you are not working. It means that you have no identity or interests. I understand for many being differently abled means poverty because we live in a world that does easily make the accommodations that are necessary to participate in paid work. Knowing that this is the case, why does the stigma attach itself so ferociously? If a person is unable to work because of a lack of accessibility, why do we feel the need to persecute them because of the way our society is designed?

When I tell people that I write, the answer is usually that it makes sense. It does not occur to anyone that I chose this because of a love of writing and sharing ideas. Writing is something that I was interested in from the time that I was a small child. Because I am doing it, it certainly is not real work. Such ideas do not attach themselves to a friend of mine, who makes his living freelancing in this area. Sitting together, people will invariably ask him a multitude of questions, ignoring me completely. It is understood that he chose his work out of love and not convenience.

A Different Kind of Test

More than two dozen seniors at Lincoln University, in Oxford, Pa., are in danger of not being able to graduate this spring — not because they’re under disciplinary probation or haven’t fulfilled the requirements of their majors, but because they were obese as freshmen.

It might sound like a joke, or a violation of individual rights, but James L. DeBoy, chair of Lincoln’s health, physical education and recreation department, said he sees it as his “professional responsibility to be honest and tell students they’re not healthy.”

In the news:

Disability turns laughing matter in Channel 4 comedy show [Headline is really misleading past the first few paragraphs of the article] [Also, oh gosh! People with disabilities don’t all agree on everything! I love that they spelled that out in the article, but it always bothers me that this is considered news.]

Penned by writers from Skins and The Thick of It, the series features six disabled characters marooned on an island, including a blind man, a woman with cherubism and a paraplegic man. Each character is played by a disabled actor with the same disability, and one complains about the number of non-disabled actors portraying disabled people.

Liz Sayce, chief executive of the Royal Association of Disability Rights (Radar), says: “There is likely to be a storm of comment from disabled people and non-disabled people alike over Cast Offs. Some disabled people will find it funny and real – portraying disabled people as adults who swear, drink and have sex. A real break from covering disability with kid gloves, or not covering it at all. Others may well find it offensive.”

The Labor of…

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

Sleep.

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

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

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

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

Now, I dread it.

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

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

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

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

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

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