Tag Archives: drugs are bad mmm’kay

5 Ridiculous Big Pharma ads

I have an ongoing peeve that relates to medication and social attitudes surrounding it: often, for some people on various sides of the political spectrum, trashing Big Pharma translates into trashing people who use prescription medications at all, for a variety of health conditions — especially for chronic conditions, both of the mental health and physical varieties. As a woman with multiple disabilities — a few of which require me to be on medications manufactured by Big Pharma (OOOOOH, SCARY) — I am not, how shall I put it, too excited about this. It’s really nice that stereotypical Extremely Naive Hippie Liberals and Rugged, Anti-Government Bootstrapping Conservatives can, theoretically, bond over how much they mutually hate those of us who take medications for legitimate medical reasons — but even those of us who, normally, would like and/or encourage all of this talk about “building alliances across the [political] aisle” have limits.

In short, there are a lot of things for which you can take Big Pharma to task without also treating the people who depend on these medications like total shit. One of these things is advertising and direct-to-consumer marketing, at which Big Pharma seems to be really quite good! And by “good,” I mean totally ridiculous. Let’s take a look at five different ad campaigns that should never have left a pitch meeting, much less been made with gargantuan budgets, professional actors, and voice-overs that calmly inform the viewer/listener of possible side effects.

5. Cialis: Yes, the one with the make-out music in the background and the couple sitting side-by-side in the bathtubs out in a meadow or something. Why is it so difficult for these folks to find a tub big enough to fit them both?

4. Uloric: Granted, this one may not be as ridiculous as some of the others on this list, but the visual of a dude carrying around a giant beaker of green liquid (which looks suspiciously like it should be in some sort of fancy alcoholic drink that costs upwards of $7) is pretty bizarre, as is the voice-over that helpfully informs viewers that side-effects may include flare-ups of the very condition that Uloric is used to treat. This might be the entire point of the ad, though; since Uloric is a medication intended to help with Gout symptoms, wouldn’t it be more accurate to have the guy wear shoes to which giant beakers are attached? Perhaps we could see a live-action depiction of the 16th-century drawing included in the Wikipedia article on Gout, instead of a guy with a big beaker of neon-green energy drink? That would be awesome, and might get the Gout-is-horribly-painful-and-this-medication-could-help message across in a way that actually makes sense.

3. Lyrica: Every time I see this one, I want to yell at the TV, particularly when the one featuring the classy middle-aged lady who bakes bread has somehow made its hellish way into my precious rerun of Dirty Jobs or another show that I don’t like to admit to enjoying. The actress in this ad pronounces “Fibromyalgia” like it’s a seasonal root vegetable or something (like “FYE-bro-MY-al-GEE-AH”) and all I can do is give the television my most hateful death glare. Oh, and even better is when she says that “My doctor diagnosed it as FYE-bro-MY-al-GEE-AH muscle pain,” and I want to scream, “Lady, IF YOU KNEW what fibro was actually like, you would not be saying that. You would probably be in too much pain on some days to do very much.” Or baking loaves of crusty bread en masse, for that matter. As someone who’s dealt with fibro for the past few years of my life, I only wish I had enough energy to bake many loaves of bread, like the woman in this commercial. Sweet, delicious carbs might help my pain, or at least give me something to focus on other than constant pain and fatigue.

2. Cymbalta: My personal favorite moment is when a kid runs up to hug the woman (presumably a relative?) and the camera focuses on her face, and she just looks so sad that the explanation just has to be terrible acting (or depression, according to the good folks at Eli Lilly). Depression’s symptoms are much, much more complex than walking around looking like the emoticon for sadface [🙁], but you wouldn’t know it by watching this commercial. I think someone should make a parody of ads like this, except that some other person approaches the woman, tells her to “Snap out of it,” and then the woman gives that person the finger–or, more accurately, gives them the 😐 face, because that is what certain aspects of depression make you feel like doing. You’re not only sad all of the time, but often you feel too hopeless to respond to people’s asshattery when they feel the need to comment on your depression and/or tell you that you Just Need To Buck Up.

1. Viagra (“Viva Viagra” spot): Truly the stuff of nightmares. The first time I saw this ad, I was awake at 3 or 4 AM due to pain (go figure, right?) and thought I was hallucinating when the opening chords of “Viva Las Vegas” started up in the opening seconds of this ad. I was, at first, confused as to what that particular song had to do with a medication used to treat erectile dysfunction. And then four middle-aged dudes–one playing a guitar–appeared on the screen and started to sing “VIVA VIAGRA!” to the tune of a song that most people associate with Elvis Presley, or any buddy comedy that has some sort of drunken Vegas montage. If you’re sure that this one won’t give you nightmares, I urge you to find it on YouTube, because it must be seen to be believed. Unfortunately, it’s been replaced in recent months with 30 seconds of yet another middle-aged white dude driving a car around in the dark. The penis = car association makes more sense than hanging out with your best buds and singing about Viagra, I suppose, particularly if you know anything about psychoanalysis.

Readers, what are your least favorite Big Pharma ads, and why? Short descriptions (and links to videos, if you have them) can be helpful for people who may have not seen the ads; please include them, if possible, so that we may all share in the unintentional hilarity.

Recommended Reading for 28 October 2010

Readers beware! Not every link is a guaranteed trip to a safe space, and the commentary is not necessarily the opinions of myself or others here at FWD/Forward, but have been included to provide you with a variety of reading that is possibly relevant to your interests (or perhaps to mine). The comments in the blog posts or mainstream news articles you will find below may or may not be triggering to various -isms, and so I would caution you, gentle readers, to proceed with the greatest of caution as you click through away from this page.

Yahoo! News: Nurse error left man brain-damaged

Mr Merrett was aware of the mistake that had been made before he lost consciousness, unable to speak. He can be heard on the film urgently clicking his tongue as a warning.

Ms Aylward tried to resuscitate him but it took 21 minutes for the machine to be restarted by paramedics, leaving Mr Merrett with serious brain damage. He had been nursed at home since 2002 after a road accident left him paralysed from the neck down.

In a strange land (sent in by reader Deborah Russell): The slow reveal

That’s one of the things I like about this book. It doesn’t try to pretend that illness is easy, that everyone can just take the pills and be happy. Kate de Goldi’s characters cope, but there are costs for each of them too. Above all, there are costs for Francie. She has found a way of living, a way of managing, a way of being… content, even if not happy per se. But there are costs. Fancie is no super-crip. She’s just an ordinary woman, who copes as best she can with the way her life has turned out.

The Living Artist (sent in by Heather Freeman): Withdrawal

I see my doctor once a month for a new prescription, because she won’t give me one with refills. (To be honest, I’m unclear if this is her policy, the hospital’s policy, or state law. My impression is that it’s the hospital.)

Last month the one person in her office who knows how to work the computer was out, so I had to have my husband call in to make my next appointment. By the time he got through to the office (which is incrediblyhard to reach by phone) their next available appointment was 6 weeks after the last one. He pointed out that I would run out of my medication before then, and they said they’d see what they could do. Of course we then heard nothing.

Feminists with FSD (sent in by reader Astrid): In defense of “Dysfunction”

Since I have FSD, I have vested interest in learning more about it – what it is, what treatments are or aren’t available, how it impacts individuals’ lives (if at all,) etc. It’s not just reading though – I’ve talked to and received feedback from women who themselves have FSD in one or more forms. I’m especially interested in how FSD is perceived and what people say about it! It’s meta, and its fascinating. So what are people saying about it? When I read about FSD, I notice a few familiar themes pop up repeatedly…

HealthCanal.com: Controversial Law Improves Care for Serious Mental Illness

Currently 45 states have involuntary outpatient commitment laws, but only a handful are designed with prevention in mind. Kendra’s Law is intended to identify and address at-risk behavior that may trigger the need for hospitalization.

Amid criticism that the law may violate patient rights by mandating treatment, the New York State Office of Mental Health commissioned an independent evaluation of the implementation and effectiveness of the program.

Gentle Readers! Always feel free to send your links for a Recommended Reading to recreading [at] disabledfeminists [dot] com. Be sure to include how you would like to be credited for your great find, and a link to any website you want affiliated with yourself.

But Really, It’s For Your Own Good…

Overarching Moderatrix Trigger Warning for Strong Language. And by “Strong Language” I mean that I swear a lot.

I pretty much knew that my life was going to get fucked up when my doctor had a Permanent Change of Station (PCS). I knew this, because according to the laws of karma to which I tend to adhere, shit was just going too perfectly for it to continue going my way.

Sometimes, gentle readers, I really just don’t like being right. Sometimes I do prefer to be wrong once in a while.

I would have liked to have been wrong when I had my appointment with Dr. Maybe. I have to see an Internal Medicine Specialist because they are the closest thing we have here to someone who can specialize in treating my condition. They are who I have to rely on to be my quarterback. When I called to make the appointment and explained that I knew that my regular doctor was PCS-ing and I would need to see whomever was replacing her, I was told that this doctor would have to do because he was not yet available. Fair enough. I made the appointment.

According to my pills (I have to count them) I would have just enough to make it that far. I can not run out. Let me repeat that. I CAN NOT RUN OUT. My quality of life bottoms out if I miss even one dose. I know this because sometimes I forget if I have taken my regular dosage or not, and I can’t take one “just in case” because “doubling up” would be worse than missing one. I know within a few hours if I have indeed missed that dose, because life begins to suck some major shit, and the fetal position begins to feel like too much effort.

I made the appointment.

Dr. Maybe greeted me. Told me within five minutes, and without really talking to me during that five minutes, or without really examining me, that I needed to lose weight and watch what I eat. Exercise and a diet change would help that, and that it would make the pain go away.

Just like that! The magical cure! The Bingo Card free space! Dr. Maybe has no idea what my diet at home is like (we make almost everything fresh, because we are very privileged to have a really great commissary and a local Korean market with fresh produce). He has no idea what my exercise routine is like, how much walking I have incorporated into my daily routine, how it makes me pass out from exhaustion at 1930 most nights and how it makes me weep with pain. How I try to swim once or twice a week, even though the Physical Medicine doctor and the Chinese Medicine specialist that I have consulted with both said I need to back off because it is causing more pain. Also, had he read my file, he would see that this condition began when I was active duty Navy, and in the best condition of my life, best shape of my life, and at the height of physical fitness, outperforming women two age brackets below me on Physical Readiness Tests just out of boot camp. It started when I was running seven miles a day on what I was told were just shin splints but were really stress fractures. It started when I had “Seeing Jesus” on a pain scale migraines that five days in the hospital couldn’t solve, but my commander insisted that I be out running again two days after surviving.

So, I’m gonna go with, no. The weight loss will not magically take the pain away, and my diet is just fine. What he can get me is a nice re-hashing of an old eating disorder battle, some nice body dismorphia, and a scorching case of shattered self-esteem. Not to mention no chance whatsoever that I will ever make an appointment with him again. Ever. Dr. Maybe is definitely a Dr. Won’t.

The pain was there before the weight. If diet and exercise is your answer, you are solving the wrong problem, doc. Fuck you very much.

I did receive a nice letter in the mail today from Medical. The Deputy Director of Clinical Services would like me to know that she has reviewed my file and decided, that for my own safety, she noticed that I have been receiving too many controlled substances from too many different providers over the last few months. As a result, I must now get all of my prescriptions written by Dr. Pre-Approved, and if she is not available (and since she is pregnant, as I found out, this might be a problem soon), I can petition to have Dr. Also Pre-Approved write them and have it approved on a case-by-case basis. These doctors are presumed to be not my primary care managers, and my PCM must get all of my scripts approved through one of them (in that order) before I can have any scripts. Ever.

Now, it already takes me almost 30 days to make any appointment with a doctor I see regularly, and this new rule is basically forcing me to somehow fit another appointment into my schedule, balancing the 30-day schedule. I am only allowed two of my meds in 30-day allotments due to hospital policy even though TRICARE approves them for 90-days at a time. Fun. Scheduling is tight. The schedule doesn’t allow appointments to be booked more than 28 days out, and most providers are booked 30 days out already. I am already having to call daily to find out if I can even schedule appointments at all.

Also, over the last two years — repeat for fucking emphasis — TWO YEARS NOW the same doctor has treated me and written all of my scripts. I have not had any prescriptions written by any other doctor during the time I have been here in Korea with the exception of the time I sprained my ankle and was seen in the emergency room. Now, my doctor PCS-es and four days later this letter is drafted now that she is no longer here to advocate for me? Raise your hands if anyone else finds that odd or convenient.

I go immediately to the hospital’s Patient Advocate, who is supposed to liase between patients and medical staff. I explain all of the above about as calmly as I can and I am somewhere between barely controlled panic and simmering rage, with my partner filling in what he can. I ask to see what from what information they have based this claim. She asks me about two referrals I’ve had in the last two weeks, both made by my departing doctor (the referrals are all signed by her). Neither one of them gave me controlled substances, and I sought out their care to avoid increasing my narcotic usage specifically to avoid any impression of drug seeking, even though my use of controlled substances is very low, lower than even my departing doctor was recommending. I even try to ignore pain to avoid taking extra meds, which we know doesn’t work for chronic pain, but I live in a fairly scared state. The military deploys doctors often, and it is hard to make the switch easily for chronic pain patients. I have to walk a careful line. I wouldn’t even let the Physical Medicine doctor, who ordered my TENS unit (at my urging) and tried acupuncture, refill my pain meds because I didn’t want this exact thing to happen.

I demanded to speak with the Deputy Director who made this call. To confront her directly. I am told that she makes these calls to protect patients like myself from becoming addicts. I point out that first meeting with a patient and reviewing cases — speaking to humans — could avoid the harm such a thing as this situation is causing. Throwing a targeted policy at a person you don’t know could potentially harm a patient and is adverse to good patient care, and violates my rights as a patient. In my case, I was already doing, in theory, what is being asked of me. I simply want the chance to choose the doctor for myself and to have the doctor who treats me be the same doctor who prescribes my meds. Dr. Also Pre-Approved was the next doctor recommended to me, by my departing doctor, to try. He was the doctor briefed on my particular case. This should be my choice to make, irrespective of what list he falls on. Some arbitrary person who knows nothing about my case is not better suited to choose this than I am.

I demanded to have this letter removed from my file. While the PA insists that the language is ambiguous and doesn’t call me a drug seeker, I adamantly insist to her and point out all the ways that it in fact does, and explain why this will make my life more difficult. Why it places more burden on me. Why it creates more hours in the Second Shift for the Sick. How it has already created mistrust between patient and doctor for me, leaving me in severe amounts of “super legit” pain for hours while a Chief Corpsman (HMC) read through my record, one page at a time, to make sure I wasn’t seeking drugs before coming to the novel conclusion that I was a chronic pain patient in — wait for it — chronic fucking pain.

It is little things like this, little notes printed off by someone who has never met a patient, signed by someone too important to give a damn and too busy to be arsed to make time for people skills, that make life nigh impossible for PWD every day. We are not trusted with our own care. We are told how things are going to be, who is going to provide it, and how often it is going to happen. We are sideswiped with half-truth information, and always, ALWAYS thought the worst of.

We are vulnerable.

I guess this is why they have to crush us with these ableist policies.

They are, after all, for our own good, right?

Right?

I’ve Got Your More Responsible Pain Management, Right Here

Not many of you would know this but I had my first experience with acupuncture the other day.

I went to see a physical medicine doctor about a TENS unit because my current dose of my narcotic pain medication for breakthrough migraine and body pain is no longer sufficiently covering the amount of breakthrough pain I am having, and as a personal preference I have decided to seek alternative methods before I agree to increase the current dosage (which honestly, I am already trying to squeak by with as little as possible because the hospital here is so stingy with it, and I am trying to be Model Patient). The physical medicine doctor, for whom I would make up a name for him, but in all honesty, I have, currently, three Dr. Kims and two Dr. Lees  so I don’t feel the need to do so, agreed quickly to get me set up with the TENS unit. I just have to come in to see the physical therapist to try it out, and they will order it for me. In the week between, Dr. Kim asked if I would like to try acupuncture.

Now, I have a very high level of phobia surrounding needles, and the thought of acupuncture, being pins, doesn’t stray too far from that for me. This is not the first time I have been asked to try acupuncture. But Dr. Kim wasn’t pushy. He offered it casually, mentioned that he is licensed and certified, and that he could start right away, if I wanted to. He smiled in an understanding manner when I explained that I was afraid that any benefit might be canceled out by my anxiety.

He spent ten minutes calmly explaining to me a slightly different method, more commonly known to military doctors as “Battlefield Acupuncture”, where pins go in my ears and stay for a week or so, at its most basic form. I agreed to try it, not wanting to have another doctor click their tongue at me for not trying everything and not wanting to give anyone a chance to call me a drug seeker. But when I say “pins” I tell you that these tiny things felt like thumb tacks piercing my non-pierced ears, five in each ear with two in the inner part (ten total). I was instructed to sleep in a supine position, which would screw up my sleep, since I am a side sleeper. But he told me to keep them as long as I could stand them.

I lasted two nights of thrashing around. And The Guy told me he was proud of me for sticking it out that long. I felt like I was in agony the whole time. I could think of nothing else.

I have seen noticed that the military is leaning towards pushing acupuncture on troops, which I think is odd, since getting other “alternative” care (things as innocuous as chiropractic care) and getting it covered by our insurance is like getting a root canal. I believe that more options is better, but it was the framing of these alternatives that bothered me.

The first time I had heard that acupuncture was being offered to troops was in an AFN commercial. AFN is the military’s overseas entertainment network, both on television and radio. They offer commercial free programming for military families. But they have AFN sponsored spots and informercials. One of those was for acupuncture, celebrating the troops who were asking for it, choosing to treat their pain in “responsible ways”, which clearly spoke to me that people who received no help from such methods (such as I discovered I did not), or where it was not available, or who chose not to, were irresponsible for choosing narcotic pain relief methods.

And that just doesn’t sit well with me. I will defend against screeds like this writer at Forbes, who are just simply dismissive of methods that have helped actual people, because the author is deliberately dismissing their experiences. That would be like someone telling me that all chiropractors are quacks because they don’t ever help anyone, when I know for a fact that the last doctor to give me actual, long-term relief that didn’t require daily narcotic care was a chiropractor specially trained in treating patients with fibromyalgia. At the same time, however, I know that suggesting that because I use certain medication to manage my pain doesn’t make me less responsible. I am pretty sure that managing my pain makes me responsible for my pain. Certain people may not like how I am choosing to do it, but it is still up to me how I choose to do so, making it my responsibility. No one but me gets to make a moral judgment on that.

It isn’t widely available. I am fortunate, were I willing to give it another go (and possibly, I might be talked into the more traditional style). Acupuncture is widely practiced in Korea, so it is readily available. But not every military medical center is so well equipped. In fact, I think your chances of getting chiropractic care are better. They’ve hit the big ones, like Walter Reed, and it seems Fort Hood, which has a high deployment rate, has one as well. I am unclear how many other branch facilities are joining…but that is hardly accessible with so many needing it. I am also unclear if this is widely available to family members, or if this is another perk to my medical record still being messed up because of Dick Cheney’s privacy law funhouse or whatever it was that has left me listed as still active duty and of a higher rank than I actually was (and yet, with my hyphenated post-married name, which I never used while active duty…).

Often times it is being coupled with Chaplain care and yoga, which isn’t going to help everyone, and you shouldn’t be forced into one in order to get the other. Nothing adds to my needle phobia like you praying for my soul. And sometimes people with chronic pain shouldn’t be forced into certain types of exercise, which really is the Military Way, I know, but they need to understand that it can do more harm than good.

It’s a big Catch-22 of hope. I hope to see a broadening of options opened up for the masses of troops coming back from battle hurting from a decade of two wars (why, yes, I do say that a lot), or even as a way to help troops still in combat zones who have to stay and carry on. I hate to see it being set up as another way to shame people into using it if they aren’t ready to be the shiny happy Model Patient.

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

The One Damned Sock…

May 1st was Blogging Against Disablism Day, and I have in my drafts at all three blogs to which I contribute regularly a post started where I had intended to write something for the day. I had my work writing caught up, so it was all I had left, really. Then something unexpected happened.

I had a really good day that day.

Like, a low pain, high energy day. The kind where I woke up and the first thought in my mind was not “oh, damn, my neck should not be moving right now”. The kind where I was able to sit up right away, get dressed, make the bed, and not even think about much else other than what I wanted to do. I didn’t have to stretch or cry or shake The Guy awake for a pain pill. I felt… good.

I got up before anyone else, and went straight to the kitchen, and turned on the stove, and got out all of the ingredients to make my famous on two continents and a Pacific Island brownies, which I had been wanting to do, but hadn’t really felt up to in quite some time. I have managed to do the things I have needed to do, mostly with great pain, and some of the things I have wanted, with guaranteed pain. Often “things I have wanted” meant that I had to plan on some quality time with my sofa, or even my bed the day after because of the massive overdraw of spoons. But on this day, this particular day, I got up and made brownies, before anything else (OK, I lied, I went to the bathroom and such things). I made brownies, and when Kid woke up she arrived just in time for me to have finished the double boiler melting portion and she got to help, and it was a joyous experience that we seldom get to share.

Then, as the brownies were baking I made Kid’s favorite breakfast; Spam, eggs, and rice. We ate to the wonderful smell of chocolate baking in my DeMarle muffin cups, which I managed to rig in my Korean oven, all while correctly guessing the temperature (our oven doesn’t have numbers on the dial for whatever reason and we have yet to find an oven thermometer) and to the sound of my new Kelly Clarkson CD mixed with my pop/rock mix on the iPod dock in the kitchen. Everything was perfect by the time we cleaned up. We had cupcake-shaped brownies for later, a clean kitchen, and I still had energy… all before 1000 (that’s 10 AM for you non-military folk).

So, since laundry is my nemesis and I was feeling spunky, I rounded up all the white clothes to be done and tossed them in our Korean combo. We packed up all of the things we needed for the baseball game for that afternoon ahead of time so we wouldn’t be rushed later. I washed and packed our new sun tea-pot and the tea we intended to brew (Ginger Snappish, you can’t find that when it isn’t the holidays, but thankfully my Guy picked up a ton of it at the after X-mas fiasco sales) and snacks. We had Kid pack her after game bag for her over night play date (you mean, a grown up night alone!?! Perish the thought!). Everything went so smoothly. Showers, dressing, all without near-passing out in the shower simply trying to wash up. I didn’t have to sit down for a rest after my shower before dressing and managing my hair. Everyone was ready to go, and I checked on the laundry before we left: one hour to go and we could hang it when we got home.

The baseball game was so much fun, as I have decided Coach Pitch games are. If you haven’t had the pleasure you should swing by one and check it out. NO ONE KEEPS SCORE! It is one of those rare things that fills you with such glee (the lighthearted joyeux feeling kind, not the rage-inducing trainwreck of a U.S. Telly show kind). There is something about the event that is kids sliding into home plate when no one is even in the vicinity of the catcher with a ball. We bantered with our new friends while our kids picked flowers in the outfield (“Hey! The ball is coming right at you, Center Field!”) and our tea brewed in the sun. A good friend I have made here wandered over and we had a genuinely great time watching 6-8 year olds slide into home plate while perfectly safe.

The Guy and I had a quiet evening and went up to the mall to catch a movie, and after eating at our favorite Ramen place (because my new throat thing has left me Not Allowed to have spicy food, so budae jjigae, which is our usual grown up night dinner, was right out. WOES!). We wandered through the book store and I got a lovely key chain for 3,000 won that is shaped like a shooting star and a pencil case for my purse, and a few bobs and bits for crafting. We went to the theater at iPark to see what was playing, and saw that Iron Man 2 was here, but decided that we just can’t see it w/o Kid, so we decided to have some Red Mango and go home.

We got a cab easily, which is a surprise, got home and put on some comfy clothes. I read my new Star Wars book and laid my head in The Guy’s lap while he rode a Chocobo around for some post-game Final Fantasy XIII fun. Then, before long we just went to bed. Because it was the end of the day and we were sleepy. Not because I was exhausted or because I was in so much pain after having been out for the day that I was pleading for a pain-killer and sleep to get through it. Just…because.

The next morning we decided to treat ourselves to Early Bird Brunch at the Dragon Hill Lodge (where, as it turns out, The Kid was brunching with her school mate and her family, but we played like we were some big movie stars hiding in the corner, which was both funny and ineffectual). With the hour and a half we had before we had to pick Kid up we hopped a cab toward Dongdaemun to do some quick errands. I got a new mug with a smiling waffle on it, which makes me so happy I could *squee*. A smiling waffle! On my coffee mug! I love Korea!

Kid and her Friend and Friend’s Brother were playing baseball at the playground when we picked her up. We loaded her stuff up, brought her home for a short nap before we did our Sunday chores (like we have regular chores on Sunday! HA!). When Kid was rested from her night of fun, she helped me hang all of that laundry. Getting all of the white clothes done is a special accomplishment for me because I hate washing and folding socks. Like, loathe with the passion of ten thousand suns hate. I remember my mother saving entire baskets of socks for me to mate and fold, and to this day I detest the chore. They were all done and I was so happy. Yay me and my body that let me get something done.

And that is when I found it. Stuck under the shelf in our laundry area. One sock. One damned sock, smudged with baseball dirt from the field from last week’s game I am sure or maybe practice, but there it was. All of the white clothes hung on the line clean, and there I was with one dirty sock.

That might also be the time I realized that I had missed finishing any post about BADD. I honestly felt like crap about both. In truth, though, I think that when we live with disabilities we seldom remember that living those good days — if we are privileged enough to have them — is our own way of speaking out against ablesism/disablism in small but powerful ways. We are allowed to live, and to not make every moment about our disability if we are able. Because we are more than the sum of our abilities or disabilities. We are also people. We have lives and families and friends events that mean things to us. There are things that happen every day that keep us, sometimes, from that drafts folder. Occasionally life happens and we are allowed to hold on to it.

This is not to downplay the activism that is writing and blogging because these things are essential in my life. They keep me whole as a person and fill wounds that are gaping for me, emotionally, especially when there are so many that doctors can’t fill for me physically. It has given me a network of people who I can’t believe I ever did without. But I am going to say that I will not flog myself for missing this one event this one day, or rather, getting this done a few days late.

That one damned sock got away from me on Saturday, and I am going to wash it eventually, but it will have to wait until I am ready. I certainly didn’t plan for my disability to take over my life, and I don’t get to plan my good days. I just take them when I get them.

Originally posted at random babble… on o3 May 2010

When Accommodations Conflict (Continued)

Reflecting on the extremely thought provoking post by abbyjean earlier, I was walking to breakfast with The Guy (caution, try not to walk while lost in thought, OYD) on a day when I was low on sleep, high on pain, and therefore using my cane. (edit: I just saw my typo! I had a funny visual of me trying to balance on a can! HA!)

Conflicting accommodations do not always mean that the conflict will occur between separate PWDs. For example, on a high pain day, I am in desperate need on my cane due to the intense pain in my hip and legs in general (though, which leg I want to use if for is debatable, even though I favor one hip). When I am that fatigued, however, using the cane is an intense use of my spoons, to the point where if I have too much to do I can’t even bother because it just winds up with me on a chair or bench in tears. Or the cane causes additional pain in my back or shoulders.

There are others that come to mind. My medication provides me with more pain free days, which is a good thing. This is an active choice I made with the advice of my doctor whom I was lucky enough to find at this duty station. The flip of that coin is that I have side effects which means that I can not always drive places, or have the energy (HA!) that I want to do things with my family, to name a few. This might not sound like a huge accommodation, but it makes a great impact on my family life, people who play a huge role in my care.

I know that some people use caffeine to both relieve some pain and migraine effects (I sometimes do) but that this has the crash effect at the end of the day (for me it means my spoons run out faster).

So, gentle readers, what accommodations do you have/use that conflict…uhh…internally? What individual needs to you have that you have to weigh daily?

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.