Tag Archives: health care

Recommended Reading for April 20, 2010

Scott Carney (Mother Jones magazine): Inside India’s Rent-a-Womb Business

Despite the growth in services, surrogacy is not officially regulated in India. There are no binding legal standards for treatment of surrogates, nor has any state or national authority been empowered to police the industry. While clinics have a financial incentive to ensure the health of the fetus, there’s nothing to prevent them from cutting costs by scrimping on surrogate pay and follow-up care, or to ensure they behave responsibly when something goes wrong.

Benedict Carey (New York Times): Seeking Emotional Clues Without Facial Cues

Ms. Bogart has Moebius syndrome, a rare congenital condition named for a 19th-century neurologist that causes facial paralysis. When the people she helped made a sad expression, she continued, “I wasn’t able to return it. I tried to do so with words and tone of voice, but it was no use. Stripped of the facial expression, the emotion just dies there, unshared. It just dies.”

Goldfish at Diary of a Goldfish: Blogging Against Disablism Day (BADD) Will be on May 1st, 2010

Blogging Against Disablism day will be on Saturday, 1st May. This is the day where all around the world, disabled and non-disabled people will blog about their experiences, observations and thoughts about disability discrimination. In this way, we hope to raise awareness of inequality, promote equality and celebrate the progress we’ve made. [Note: Click the link for info on how you can participate in BADD 2010!]

Max Harrold (Montreal Gazette): Filmmaker in wheelchair says red-carpet rejection inspired film

[Filmmaker Sean Marckos] has it all on video: He and a colleague, both in tuxedos and with their tickets in hand, being hustled out of the famous Palais des festivals in Cannes in 2008 and 2009. They were told they could enter only through a rear entrance, away from paparazzi. “They didn’t want me next to the beautiful people like Brad Pitt and Angelina Jolie,” said Marckos, 31, who has muscular dystrophy.

National Center For Lesbian Rights (NCLR): Greene vs. County of Sonoma et al.

One evening, Harold fell down the front steps of their home and was taken to the hospital. Based on their medical directives alone, Clay should have been consulted in Harold’s care from the first moment. Tragically, county and health care workers instead refused to allow Clay to see Harold in the hospital. The county then ultimately went one step further by isolating the couple from each other, placing the men in separate nursing homes.


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.

Tasting Fear

[This here is a warning that the author has written a post about, amongst other things, being depressed and suicidal. For this reason there is a clicky thing. Use it in whatever health you got. Also please note that with respect to my wife and our marriage you are getting exactly one perspective–mine–and everything is filtered through my experiences of abuse. This is not an objective reporting of events.]

Y’all who’ve been following this adventure know I’ve been fucked up for a while now. It’s been next to impossible to get any work done–it took me until five-thirty this morning to get caught up on my inbox. Today I got to explain why I should keep my job. On the phone. I don’t know as I was very convincing. Being highly ambivalent about wanting to keep it at all isn’t helpful with the convincing. Nor the panic that comes with phones, the stammering dysphasia aphasia that is so heavily influenced by stress.

Maybe I’ll get to keep it through the end of the month. I keep telling myself I should be at my desk now working.

I’m in bed with the notebook and I haven’t gotten dressed. I woke up six hours ago. Continue reading Tasting Fear

Trust Me

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

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

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

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

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

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

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

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

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

Two weeks later I have my IUD.

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

And now, I can’t trust her.

Originally posted at random babble…

Veterans Find Self Expression and Therapy

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

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

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

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

It also left her with PTSD.

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

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

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

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

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

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

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

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

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

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

Recommended Reading for November 5, 2009

Remember, Remember the Fifth of November
Gunpowder, treason and plot.
I see no reason why gunpowder, treason
Should ever be forgot!

Happy Guy Fawkes Day, UK-folks!

Via SpiralSheep: Feminist Spoons

Friends and family are aware enough of my health problems to understand when I have to cancel things, or rearrange them. But these days, I am much less involved in feminist activism than I ever have been.

This is definitely spoon-related, and also directly related to my main local feminist group meeting in an inaccessible venue for so long that I gave up arguing with them about it. (They now meet somewhere which may be accessible, but they’re not sure. I feel so thoroughly disenamoured with them that I’m not willing to test it out).

But I have also found that while individual feminists can be very understanding with my lack of spoons on a day-to-day basis, it sometimes seems less acceptable when it interferes with my ability to attend actions, protests and meetings.

Sick Bodies: Health Care and the Body-As-Machine

But, more fundamentally, I find it problematic that the entire set up of a hospital is about the production of health care, not the recipients of that care. Long after being shuffled into a room filled with equipment and posters not designed with my challenging body in mind, and as I watched the doctor treating me struggle to find words beyond, “Well, I’ve not actually met anybody who has done that,” I wondered seriously about what could possibly be done to fix a system that has so little respect for the bodies of the individuals it treats.

We all carry our scars, surgeries, allergies, broken bones, memories, genetics, blood, hopes, and guts with us wherever we go. We are stunning in our uniqueness, and our bodies are the seat of who we are. Of course, we all have the same basic parts, but I wouldn’t take a car to any old mechanic or my pet to any vet—I want someone who understands the particular quirks of my engine or that my cat needs to be coaxed gently out of her hiding spot.

In the news:

Politics are Crippling State-funded Services to the Disabled [US] [long]

This week, Meyer’s 16-year struggle for a productive life will become more difficult. Scheduled California budget cuts will increase the deductible some low-income disabled people must pay for workers from the In-Home Supportive Services program. The cost hike may leave him with as little as $600 a month to live on, pushing him closer to the point where he’s forced to enter a nursing home. “I just want to be able to stay here, live a healthy life, and be a productive citizen,” he says.

Lawsuit filed against school district:

The suit contends S.G.’s May 2007 Individual Education Program was never modified and he was “unilaterally removed from his ‘inclusion’ classes without notice to (his parents) solely as a result of disability in December 2007 and in direct violation of his IEP.”

The suit also claims S.G. was placed in a more restrictive environment when removed him from his inclusion classes, “caused negative cognitive and social effects as well as mental anguish.”

Moreover, S.G., who has an allergy to milk and soy products, was given them on a daily basis during the 2007-08 school year.

These links are to images that belong to Getty Images, so I’m just going to link to their site rather than post them here. I cannot speak for how accessible their website is, though.

They are shots of wheelchair-using athletes “finishing in the wheelchair division of the New York City Marathon”.

Hugging! Different hugging! Action shot!

How to Be a Good Doctor

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

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

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

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

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

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

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

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

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

Cross-posted at Impermanent Records.

Recommended Reading for October 26

Linkblurt: We Are Immobilised

A disabled college student is having trouble getting around campus, after someone stole his motorized wheelchair. […] Horus had locked it up and left it charging overnight. When he returned to campus, it was gone – all that was left was the charger. […] Horus’ wheelchair cost about $5,000 and that means whoever stole it faces grand theft charges.

“It’s really difficult for me to replace it. To replace it, it would take me like a year,” Horus said.

Health Care is an anti-racist issue [US]:

See, I’m one of the 25 million Americans who are underinsured. I have health insurance — pay $350/month for it — as part of a new policy that I switched to back in January when I quit my 9 to 5 to become a freelancer/fulltime writer for awhile. I’m pretty healthy and only in my thirties, but I have a family history of fibroids (like 50% of black women). So every year when I get my annual physical, I also get an ultrasound to check for those. This year the test showed small fibroids — too small to worry about, really, not even requiring treatment, though I need to keep an eye on them in case they grow. No biggie, I thought; my doctor’s efforts at preventative care had done what they were supposed to do, and detected a potential problem early enough that I can fix it easily if necessary. Health care at its best.

When two whole cakes ain’t enough arsenal…

I was leaning against a sign that read “Bus Stops Here” and jamming to some Dresden Dolls, my trusty guide dog sitting politely at my left leg. He laid down impatiently as the minute hands ticked and still no bus in sight. Then, out of what most docs wouldn’t call peripheral vision I spotted a figure stooping for a pet-by.

What is a pet-by, you ask? It’s when a knowing pedestrian sneaks in a pet or smooch or otherwise grossly boundaries-crossing form of affection at an unsuspecting service animal. Not to be mistaken with human grabbings or other forms of harassment but nonetheless devious and irritating for both animal and human handler.

Without missing a beat and sans usual snark I said loud enough for passerby to hear that “that was a shitty thing to do.” There, I said it. That was a shitty thing for person to do. Ask first, respect my answer, move on. Clearly knowing petting wasn’t allowed, ze sneaked on by, hoping I wouldn’t notice. Too bad my dog alerts me, not liking unknown human touch too much.

Where Neurodiversity Meets Feminist Theory: Part I, Part II, Part III:

Another area I see feminism and disability-rights perspectives reinforcing each other is on the question of caregiving. This might not seem like an obvious choice, since you often see feminists and disabled self-advocates at odds over this issue: when disabled people assert our right to adequate care in our own homes (or wherever we choose), feminists argue that we are also claiming entitlement to the underpaid or unpaid labor of women. (See the feminist blogswarm over Ashley X for ample evidence of this conflict).

But when you think about it, modern industrial capitalist society’s way of dealing with children, disabled people, elderly adults and every other group that needs help with daily tasks is exactly what you’d expect from a society in which women are invisible second-class citizens. When women are not valued as highly as men, women’s work is not regarded as real work, and obligations that fall under the umbrella of “women’s work” (say, care for the old, the sick and the disabled) will be more likely to be dismissed as “family responsibilities” in which government meddling is unwarranted.

Post-Trauma.net is “here to help you access information about Post-Traumatic Stress Disorder and related mental health information.” They have a list of resources available.

Depending on narcotics

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Addicts we are, then.

Recommended Reading for October 19, 2009

In the Blogs:

Them and Us

A lot of people have caught on that they need to provide access for the disabled when they build something, but apparently access is only needed for Them.

You know, Them. There’s Them, and then there’s Us. They might be disabled, but We aren’t, and never will be.

Accessible restroom? Oh, no, because the restroom is only for employees, and none of our employees is disabled (or ever will be).

Elevator to the second floor? Oh, no, because the public doesn’t need to go to the second floor, and nobody who works there is disabled (or ever will be).

Access to the stage? Oh, no. There’s access for the audience (Them), but the actors and singers and stagehands (Us) aren’t disabled (and never will be).

[This really resonates with me, especially after Campaign School this weekend. Although they did address issues of making accessible campaign literature and ensuring your office was accessible, everything was spoken of as though no one with a disability would be part of a campaign, either as a volunteer, employee, or candidate. Them, and Us.]

Marginalized folks shouldn’t always have to be “the bigger persons”

But, you know, it’s not just people of color who are constantly expected to show extraordinary compassion when faced with bias. It is women, gays, lesbians and the transgendered. It is the disabled, the obese, immigrants and the poor. Ask any marginalized person and it is a safe bet that they have been told “have a sense a humor,” “don’t be so PC,” “that’s just how so-and-so was raised,” “here’s a great teaching moment, “you have to understand some people won’t be comfortable with x, y, z,” “he didn’t really mean it.”

Via Unusual Music: College Mental Health: A Different Diagnosis:

Students interviewed for this story reported that mental health seems like a low priority on campus. Alexa at New York’s Westchester Community College notes, “Mental health seems to be something that people really keep to themselves.” She describes her community college’s scarce resources as consisting of one social worker and a two-by-three inch bulletin board in the upstairs of the student center. “I only realized it was there while waiting for three hours in the hallway to register for classes.”

Access to services — such as individual and group therapy, consultation and referrals, support groups, medication monitoring and crisis hotlines — varies from school to school. However, most college campuses would benefit from improvement and expansion of their mental health facilities and services. Students are generally granted a few free counseling sessions, but due to increasing financial restrictions, the number of sessions can be scant — as few as five visits per student.

At two of my previous universities, you were limited to less than 10 sessions over a year. I believe my current one has unlimited sessions, but you must call the office between 9:00 a.m. and 9:15 a.m. for a same-day appointment. There is no booking in advance.

In Our Own Words: Fighting for our DLA [UK] [Older post] [DLA = Disability Living Allowance]

DLA was established, after years of research, because the costs of living as a disabled person in a barrier-filled world organized by and for non-disabled people were considered to be so high. The estimated costs of disability that came out of this research were far, far higher than what is actually now given to DLA claimants. It was also emphasised that DLA should not be means-tested, because the costs of disability are high whether a person is extremely poor or generally has enough to live on.

Also, FrolicNaked did three posts about NPR’s American health care discussion. Post 1, Post 2, Post 3.

My new favourite website: Wave: Web Accessibility Evaluation Tool. How does your website measure up?