Tag Archives: chronic illness

Recommended Reading for November 23, 2010

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miss_invisible at Take a little look… (DW): Origins

I often find myself wondering when, exactly, everything started. Have I always been dealing with mental illness? Have I always been, to greater or lesser degrees, disabled? At times the wondering borders on obsession, the inability of my anxious mind to let things go making me turn the thought over and over in my mind. Maybe part of me thinks that if I knew when it started, if I could find some moment and say, “This is when it began,” then maybe I could master it. I could understand it, I could control it, I could fix it. Ridiculous, obviously, but a lot what goes on in my head has fairly little to do with logic.

Shoshie at Catalytic Reactions: Afraid to Fly (trigger warning)

I particularly worry about flying the day before Thanksgiving.  The flights are so full, the airlines are looking for any excuse to boot people.  And now, there’s the added stress of the body scanners/grope searching.  I don’t want to go through the body scanners.  I don’t want someone to see my naked body.  I’m not ashamed, but I haven’t done anything wrong.  They have no right.

Lene Anderson at The Seated View: Everyday Hero

The click in my mind that connected that to the undertone of amazement that a person with a disability would adapt and go on with their life. It’s as if there’s a sense of awe that someone would face difficulty or pain without being curled up in a corner, gibbering in fear and how this bestows upon the person a regard as being a role model. Because it is apparently inconceivable to the able-bodied that it is possible to have a life while not being able to move your body the way the Abs do. Inconceivable to the point that there is this weird sense that disability conveys an alienness, an otherworldly not quite personhood.

BenefitScroungingScum at The Broken of Britain: Clare’s Story

I’ve been exhausted for as long as I can remember. I remember walking along in a kind of dream state when I was 7 or 8. I never went out anywhere as a teenager, I didn’t have the energy. At 19 I went to Germany to be an au-pair and remember the exhaustion of that. When I returned I went straight to University to study German. In a summer job in a museum in Munich I used to imagine making a den in the coaches that were part of the exhibit. I started to forget words. A nightmare for a linguist. That’s when it got worse. In my year out, I developed an allergy and was prescribed a high dose of antihistamines. I just slept through the rest of that year. The next year I developed a flu that didn’t go away and slept through my final year too.

Shari Roan for the Los Angeles Times: Sensory stimulation could prevent brain damage from stroke

Imagine a safe, inexpensive and drug-free way to prevent the long-term brain damage that often follows a stroke. No such treatment exists, but a new study involving rats suggests it might not take much to prime the brain to repair itself in the immediate aftermath of a stroke. For the rats, the simple act of tickling a whisker was enough to allow the animals to regain full cognitive function after a severe stroke — as long as the treatment was given within two hours.

Harriet Hall at Science-Based Medicine: Chronic pain: A disease in its own right

Herself a victim of chronic pain, [author Melanie Thernstrom] brings a personal perspective to the subject and also includes informative vignettes of doctors and patients she encountered at the many pain clinics she visited in her investigations. She shows that medical treatment of pain is suboptimal because most doctors have not yet incorporated recent scientific discoveries into their thinking, discoveries indicating that chronic pain is a disease in its own right, a state of pathological pain sensitivity.

Keeping track

101, blaming, normality, othering, social attitudes, , , , , , , , , , ,

One of the more bizarre stereotypes (if one can call it that) about people with fibromyalgia is that we obsess over “every little ache and pain,” to the detriment of ourselves and much to the apparent annoyance of the “normal” people around us.

Here’s the thing: If I were to obsess over my pain in the way that “obsessing” is traditionally defined, I would never get a damn thing done. This is why keeping track of my pain levels each day is so important — so I don’t have to obsess over it. It takes five minutes tops to jot down some notes at some point during the day; if that fairly small action equals “obsessing,” I shudder to think what the alternative might be.

I have a pretty full schedule. I go to school full-time (I’m getting my M.A.), and commuting to school via public transit tends to take a lot out of me even though I live somewhat close to campus; this is to say nothing of actually going to class, participating and being fully present in discussion and activities, and getting work and research done outside of class. And then there’s all of the stuff that’s not school-related: spending time with my partner and with family and friends, taking care of my dog, meal preparation, living space upkeep, creative work and hobbies, and other everyday things that are too mundane to list here. All in all, many of these things are par for the course in “mainstream” life. The ability to do all of these things and more in a given day, however, is something that many abled people seem to take for granted. Given my pain issues and the fatigue that comes with them, I have had to make quite a few adjustments as to what I can do and how and when these things get done. Often, I have to make trade-offs when it comes to what gets done or what I can do; depending on my pain levels on any given day, I might have to scale back on what I can do. There are days, too, when I can’t do much at all.

And yet, when some of us do have to keep track of our pain levels, make trade-offs when it comes to getting things done, give ourselves space to recoup, take a day (or a few) off, or acknowledge that, hey, maybe “getting everything (and more!) done” in the ways that most “normal” people are expected to is unrealistic and may actively make our conditions worse, abled culture (and many abled people) shows up to tell us that we’re Doing It Wrong, that we should be doing more, or that we should be spending our already-limited energy on other or “more important” things. You’re not doing enough, quit being lazy. If you really wanted to, you could be involved in real activism/you could get a real job/you could just suck it up and stop bothering everyone by talking about your pain. Ignore your pain and maybe it will go away. Your pain can’t be that bad! By adjusting your life to your health condition, you are letting the pain win. Positive thinking! Willpower! Bootstraps!

I have to wonder why some of the adjustments that I’ve had to make, such as keeping track of my pain levels, and then carefully planning what gets done according to how I am feeling, seems so incredibly threatening to some folks. Perhaps it’s that they want to explain away why they themselves do not have these problems and will (they think) never have to deal with illness, pain or disability firsthand, because they’ve lived their lives “right.” Maybe it’s because people living their lives in ways different than themselves is scary and weird. It could be because many people simply cannot conceptualize living with chronic illness or pain, and so they have to make people who do into an “Other” whose decidedly non-mainstream existences, life experiences and habits cannot be understood, or even given consideration, by those in the mainstream.

While small things like keeping track of pain and fatigue levels may seem incomprehensible or weird to people who are not disabled, these adjustments are very important for some of us. To an outside observer, the five minutes a day that I spend noting my pain levels — and my planning of my day depending on my pain and fatigue levels (what a concept, right?) — may seem totally alien, and like it does nothing to combat the stereotype of people with fibro as a bunch of hysterical middle-class women who are obsessed with their physical pain (hello, sexism!). For me, it’s a survival technique, however small and “alien” to people who don’t live with chronic pain or health issues.

Recommended Reading for October 26, 2010

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firecat at Party in my head (DW): How To Be Sick

I went to this talk because I have chronic health conditions that affect my mobility and energy levels, and I am a caregiver for my mother, who has Alzheimers. I’m a Buddhist and my study of Buddhism has helped me work through grieving over these things and building a life around them, and I wanted to hear a talk that specifically addressed how Buddhism can help a person deal with chronic illness. I figured that I already knew a lot of what she was going to say, but I thought I’d learn a few things and find out that I’m already doing a lot of what there is to do, and that would help me feel more confident.

beautyofgrey at The Truth That Came Before (DW): On invisible illnesses and harmful judgment

Our illness is invisible. At first, even I did not want to see our illness. I wrote it off as “discipline problems” or “unresolved anger” and resolved to become a better disciplinarian, better parent, and to slowly count to ten. I assumed it might be due to changes in our life. Later, doctors did not want to see our illness. Everyone had a healthy weight and height. They wrote it off as “difficult phases” and assumed that the problem resided at home. They asked us to wait a year or two before we considered whether the chaos, aggression, and emotional stress weren’t just tricks before our eyes. Our illness was invisible, because we were not “that bad off”.

kankurette at The Hidden Village of Aspergers: Happy Mental Health Day. If “happy” is an appropriate adjective

I’d always been a melancholy kid. Think Marvin, Eeyore, Cassandra, the Ides of March. I just went along with it. In my teenage years, I had moments where I was suicidal, and I started self-harming at 14, but I just put it down to teenage angst. Depression wasn’t an illess, I believed. It couldn’t happen to me. Even though my mum turned into a wreck after my dad died and spent days in bed, even though she had panic attacks in front of us and seemed to be more temperamental and headachey than usual, even though the doctor gave her pills to take, I just thought she was sad; I didn’t realise she was ill.

K__ at Feminists with FSD: Interesting posts, some time in October

I have a feeling we’re probably going to see another spike in coverage about Flibanserin, (I’m thinking certain feminist websites are more likely to cover it than others, and maybe some op-ed pieces in mainstream newspapers, as well as others) and when we do see it, I can guarantee you it’s going to get real ugly, real fast. Everyone, get your bingo boards ready to go if you’ll be doing any reading on the matter. If you see any new and bizarre arguments about FSD and why no woman, anywhere, ever, needs medication for sexual desire problems ever, in comment sections to the inevitable anti-Flibanserin posts, let me know; we may have to produce a version 2.0 if we keep running into the same old shit again and again.

Lisa at Sociological Images: What is Intelligence?

We often think that intelligence is somehow “innate,” as if we are born with a certain IQ that is more or less inflexible.  These scores suggest, however, that our potential for abstract thought, though it may be located in the biological matter of the brain, is actually quite malleable.

(Note: For a further discussion of the concept of “intelligence” and its history, see kaninchenzero’s AWP post on Intelligence.)

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

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

activism, blaming, bodies, disability activism, intersectionality, invisibility, medical practice, oyd rants, social attitudes, , , , , , , , , , , , , ,

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

I Wonder If I’ll Get Delay of Game…

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I received an email from my Primary Care Manager the other day.

She responded to my message that I needed refills even though it wasn’t time for me to come back in for a visit yet to let me know she had arranged for all of my scripts. At the end was something that winds up keeping me awake with worry.

“I’ll be leaving [the hospital] 10 September.”

Fuck.

“I’ve told [new doctor taking her place] about you to make sure he is up to speed.”

*panic begins*

“I wish you well.”

I’ve made bad sports metaphors about the way that good health care goes when you have a chronic condition, and your doctor leaves. Basically, my center is out for the season. The thing is, pucks just started flying in from all directions as very slight things have started to go awry, and we’ve been trying new things to fix them. I’ve agreed to a few new referrals that I’ve declined in the past (such as seeing the Neurologist when in the past I’ve been shamed and yelled at by them), some alternatives to my current regimen.

Now, I feel not only ill-prepared for the season, but naked on the ice for the game.

A change of doctor, especially when it is unexpected is alarming. When things have been going well for so long. When my current doctor has done so well advocating for me. When she has insisted that I not be ashamed to ask for more pain medication. When she has listened, not only to my medical concerns, but to my life concerns, because she really believed that they were equally important.

Perhaps the new doctor will be just as wonderful. Perhaps he will storm onto the ice and intercept the puck and make a saving play, and find answers we didn’t see before. Perhaps things will continue and I will notice little or no difference. I might get lucky and this new doctor will allow me to email him for prescription refills to.

But what if he isn’t?

It’s the “what if?” game that is causing the voice inside to shriek that everything is going to fall apart. If for some reason this new doctor turns out to be a nightmare the process of finding another one is not simple. It takes time. It takes spoons. It takes a calm place in my mind that I am not sure I can achieve during this stream of events.

*The title refers to this hockey penalty. In keeping in the spirit of my bad sports metaphor, for fussing about a new doctor…

Recommended Reading for 26 August 2010

i'm right here, identity, intersectionality, military, normality, othering, race, recommended reading, shaming, , , , , , , , , , , ,

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

Westborough News: Marines shoot calendar for male breast cancer research

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

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

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

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

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

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

NPR: Administration To Appeal Ruling in Stem-Cell Case

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

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

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

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

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

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

New VA Research Could Explain Lasting Effects of PTSD

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Gentle readers! I come to you today with a delighted feeling that I do not believe is caused by the half life if a painkiller! Today I read an article in my paper version of Stars and Stripes that had to do with the intersection of disability and veterans and I was not instantly thrown into a bout of contemptuous paper shredding! I mean, really, I could make party favors and possibly go into business selling paper mache animals for children to beat with broom handles in hopes of gathering candy! But I am a slightly morbid person some days, especially when the painkillers aren’t working.

But in all seriousness, this article, about the long term effects of PTSD on the body, has some points which I will now discuss with you in a non-concise manner! Not the least of these details, relegated to two brief paragraphs, is the fact that the people at the VA are doing one study specifically aimed at women who served in the Vietnam War, acknowledging that while women did not serve in combat, that the war affected them in very real ways:

Women did not serve in combat during the Vietnam War but many experienced trauma while serving as nurses and care providers to the wounded returning from battlefield, Magruder said.

“No one has studied the mental health of these women,” she said. “Their experiences were certainly different than the men, but they had other experiences. Some of these women were the last people to hold the hand of an 18-year-old kid who was dying.”

Gee, their experiences were different from men, you say? No kidding? *ahem*

One of the biggest myths that I encounter, being the go-to girl on military matters in some social justice blogging circles is that combat veterans have the patent on PTSD, which is not only incorrect, but also erases the experiences of countless other people whose lives are destroyed by the ways that PTSD is still misunderstood. I’ll take two paragraphs if it means that the VA is finally getting around to accepting the idea that ladies might actually have what it takes to handle the VA being wrong (about ladies having PTSD, that is).

The VA is now trying to weasel out of the fact that they were ordered to look into this PTSD business a long time ago — a decade but who’s counting, amirite? — but decided to throw Congress the bird and a “Ah do what Ah WANT!” Eric Cartman impression. The National Vietnam Veterans Longitudinal Study, expected to help create new policies and effect changes for incoming veterans with PTSD by 2013 might have actually done some good for people who are already having trouble convincing doctors at the VA that their condition is real if the VA could have been arsed to get this show on the road back then. A decade ago they were one less war behind.

It’s nice that they are starting to get around to looking into things like the correlation between living with PTSD for years and developing other conditions. Things like cardiovascular disease, cancer, dementia, asthma and diabetes are common among Vietnam vets who have been living with PTSD for decades, and according to the article there are some who believe even the immune system is affected by years with PTSD. But you can’t help anyone when you aren’t doing the research to find out how.

As the VA is becoming sandwiched between claimants from war era veterans from major wars that have left physical and mental scars on so many, it is important that they get their act together and start doing what they were told to do a long damned time ago. Having the longitudinal data from Vietnam veterans will more than likely prove useful as more and more people come home from two fronts to their old lives and attempt to readjust, and it could lead to better services for more veterans from any war. I can’t say that I have a lot of faith in them to get it together. As Charles Trumpower, a disabled Marine who tours the country speaking to veterans about PTSD notes, not a lot has changed in the last 35 years.

Don’t get me wrong, I’m thrilled to see this research and this effort going underway, but wow, readers, should this have been done a long time ago. I can’t help but think of all the people that this could have helped.

Fighting To Get Back And Other Cute Metaphors

life changes, military, oyd rants, , , , , ,

Moderatix note: This post will be United States Military centric, as that is the perspective I offer, and the broken system within which I currently exist and attempt to navigate.  Other voices are welcome and experiences appreciated within the context of the conversation, since I can not pretend to know every thing about every military experience from every branch in every country.

A while back I wrote a little bit about Permanent Limited Duty, or PERMLIMDU as we called it in the Navy. It is the status you are placed in when you are injured or sick enough that you can no longer perform your job to military standards and the military has a board decide how much you can do, how long you can do it for, blah blibbity blah.

I also get a daily subscription to the Stars and Stripes newspaper because I like to read while I am on the toilet. It seems appropriate.

So it stands to reason that I would come across this article from Stars and Stripes (the online and the paper may vary a bit, I haven’t matched them up side by side, but there is usually a slight variation if I can find them in both mediums at all) about servicemembers who are “fighting to get back”. Actually, in the online version the headline uses a cute joke “but results may vary”. I tried hard to laugh. *ahem*

Now, let me be perfectly clear: I applaud the efforts of the military members who worked through their injuries and fought to return to their jobs. I hesitate to applaud this type of story, because these always, always, especially when covered by the military, feel “inspirational” to me, even though the veteran in me applauds the veteran who is them, irrespective of the intersection of race, gender or other marginalization, for getting back to any kind of duty status. Because the military is an animal that will eat the less than perfect alive and shit them out and bury them, forgetting they ever existed.

According to the article, “200 soldiers, 58 Marines, 33 sailors [I would have been 34] and six airmen have petitioned for, and won, the ability to continue to serve even though the military has found them unfit for duty”, which is nothing short of remarkable considering the way the military has about tearing people down. What is interesting is this article and the way it highlights some aspects of this marginalization, and glosses over others altogether.

Most interesting to me is that of all of those people, they could not find one woman to highlight? Hmm… funny that. I can’t imagine that not one of those many people who came back to PERMLIMDU status was a woman.

Most aggravating to me was the story of Spc. Jake Altman, whose story was almost presented as a he-said, he-said, except that they casually dismissed Altman’s feelings of being mistreated. He mentions being put on patrol in a damned war zone without his prosthesis, because his superior said that it looked like it was hard for him to see others doing it better than him. So, what? Was it Sgt. O’Brien’s job to teach Altman a lesson in hard knocks? Because something tells me that Altman had already skipped ahead a few courses in that one and could happily give O’Brien the Cliff’s notes explanation. Not that I think he would listen. Because a good number of TABs tend to not really try to get it when PWDs try to describe their experiences to them.

Altman contacted the Warrior Transition Unit, a wonderful thing the Army has going on, and has eventually sought discharge. I can empathize.

Because at the end of the day, no matter how much you want to stay in and do the job, what others think and how they treat you matters. It matters enough to drive you out. I think that if someone did a study or a survey or wev, they would find that people who transitioned out of the military due to illness or injury might possibly have depression due to a crushing loss of the camaraderie, but that is my lay opinion based on my own experiences.

The dismissive air of the article over Altman’s attempt at returning to deployment, and the following segment, subtitled “Up To The Challenge” as if Altman somehow had a moral failing, as if the treatment of those around him, who judged him outright and convicted him of being less-than due to his injury.

My job in PERMLIMDU would have been much different. I am not even exactly sure what it would have been, to be honest, because… well, in my mind I still gave up. Getting injured in the military, or ill, or anything that makes you less than a perfect TAB specimen, eats you alive. It starts to kill you from the inside, knowing that you are a failure, because you have been conditioned that anything less than the best is unacceptable. The glimmer of hope that is PERMLIMDU gives you back a sliver of that self worth.

How Many Straws?

bodies, introspective, life changes, military, , , , , , , , , ,

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

I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

accessibility, invisibility, small stories, social attitudes, work, , , , , , , , , , , , , , , , , , , , , , ,

(Cross-posted at three rivers fog. See more BADD 2010 at Goldfish’s blog.)

I’m pretty open about my health issues. To be honest, I don’t know any other way to be. I know how to strategically hide my disabilities from strangers in passing interactions, but from the people with whom I interact on a daily basis? Given my appearance — tall, slim, young white girl, pretty enough, clean and conventionally dressed, perfectly middle-class — you’d think it would be easy to keep from communicating variant health, while in reality it is highly tasking. It takes energy to mask my medication-taking, body-resting, trigger-avoiding, activity-budgeting ways from the people around me, and I’m already running an energy deficit just to be around them in the first place.

So fuck it. I don’t hide it when I have to down a pill. If pain, fatigue, or cognitive issues are preventing me from doing something — a task requiring me to stand up or walk somewhere when my back pain is flaring up; speaking with anyone by telephone when my head is throbbing and my brain is not processing full sentences — I say so. I’ve stopped bothering to tuck in my TENS wires to make them completely invisible. When people ask me about the Penguins game last night, the response they hear begins with a mention of my 8:30 bedtime.

There are drawbacks to this. Sharing or not sharing information about one’s health is an extremely fraught decision; some people consider this information rude and gross (even when the actual content is totally innocuous), it can invite unwanted questions and speculation, and there are people who will use your undisguised behavior or the information you have volunteered against you in the future. It amounts to a choice between a life of concealment, which can quickly drain a person’s spirit and often aggravate their actual condition — and a life of vulnerability, never knowing what will be held against you, or by whom. Continue reading I can’t count on anybody to understand. (Blogging Against Disablism Day 2010) →