Tag Archives: chronic pain conditions

Guest Post: Embracing Disability, Struggling for Emancipation, Part two: Dissecting Content and Medium

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

This is the second post of a short series; part one, “Rocky Beginnings,” can be read here.

There is a part of growing up that was never really addressed in my family: leaving home and starting your own family.  When I met my spouse in college, I realized that I had no idea how to become a healthy, emancipated adult; I simply had no examples to work from.  When you throw in the fact that my health began to decline shortly after I began to make earnest attempts at emancipation – and stopped backing down every time I received substantial pushback – the process has frankly been excruciating.

I keep many aspects of my personality secret from my family – as a genderqueer atheist Catholic*, I have decided it is just not worth the effort.  I also imagine that the “I thought it was obvious!” defense would be plausible if I were outed, which assuages my guilt a bit.  Unfortunately, it becomes difficult to hide the extent to which your illness is affecting your life when you are sleeping 15-20 hours per day, and have dropped out of grad school.  Hence, the fact that I have not had a conversation that neither devolved into a frustrating, tear-filled shouting match, nor focused largely on the weather.

As discussed in part one of this series, I have addressed the content of my family’s objections to my “life choices” – because getting sick is obviously a life choice – extensively.  Numerous emails, phone conversations and weekends in my hometown have been devoted to explaining exactly what was wrong with each hurtful, disrespectful thing my family says.  These conversations usually end with my mother suggesting that if I can’t hold down a job, I should just move back home.  Yes, screaming at me, denying my illness, and accusing my spouse of abuse are all meant to make me want to be around that behavior 24/7.

Pursuing a suggestion from my therapist, I have tried redirecting the conversations to the core issues at play – emancipation, healthy boundaries, and the fact that I am an adult.  Given that similar discussions took place before this most recent series of health developments, many in regards to the fact that I went to college 200 miles away from home, got married, then moved to a city 500 miles from home, and that my mother has also dealt with issues concerning emancipation and healthy boundaries, I felt that these issues were worth discussing. I recently asked my mother whether she thought she had a right to know every detail about my life.  Her response terrified me in a way few things have: “Well, you’re the one having trouble.”  The thought that if I ever need help, I may have to trade my basic privacy scared me so much that my vision blacked out.  I had never felt the loss of my family’s support as strongly as I did then.

When my attempt to create healthy boundaries is perceived as an abusive spouse separating me from my family, what actions can lead to a happy ending for all involved?  I am afraid that, by insisting on what I perceive to be a normal, adult life, I am causing substantial pain to my family, who interpret these actions to be the results of abuse.  They are afraid of losing me forever to a terrible situation, and cling more tightly.  I am afraid of losing myself forever by staying.  No one is happy here.  No one is benefiting from this pain.

I don’t know what to do if this continues; I am worried about the effect that being in hopeless situations has on my suicidal and self-harm ideation, especially given that this very situation has triggered both.  I have no control over anyone’s actions but my own, but the idea of distancing myself from my very tight-knit family is disheartening.  Also unfortunate is the fact that if I don’t talk to my grandmother, Uncles A, B and C won’t talk to me, and Uncles D and E will spend any conversation time pressuring me to reinstate contact.  I would also lose absolutely all contact with my brother, niece and nephew.  Sadly, I know that if I chose to play family politics here, I would “win”.  It just isn’t worth the slimy feeling afterwards.

I am working to build a support network outside of my mother’s family.  I have a few very close friends from college and my neighborhood who have helped me tremendously.  I was only at my graduate school for a few months, and was so consistently physically excluded from events that I gave up on forming connections there.  The group of people that has consistently come through on helping me with whatever I needed is spread all over the world, and many of us have never met face-to-face; my friends from various online communities – activist groups, fandoms, friends-of-friends – have saved my life.  Days when I cannot get on the computer (which lives on my bed, along with all of my medications and enough food to last a few days) are rare, and the communities there are amazing – and not always in the inspiring way.  It is in this very community that I came to accept my right to feel angry and defeated at times.  I don’t have to be a “super-cripple,” and that realization is what keeps me going through the bad days.  I am hoping that this ability and time will lead to a healthy resolution with my family.  If not, I already belong to a strong community here.

*Trust me, it works.  You just have to stretch your definition of “cafeteria Catholicism” a tiny bit further…

Guest Post: Embracing Disability, Struggling for Emancipation, part one: Rocky Beginnings

Eliot Renard is a genderqueer, feminist, socialist Chicagoan who enjoys making math and science accessible and fun for students through various online tutoring programs.  Ze also has a health blog, personal blog and tumblr, because compartmentalizing is fun.

I began experiencing the symptoms of what I now know to be depression, fibromyalgia and chronic fatigue syndrome when I first hit puberty.  When I complained, the doctor would usually laugh and attribute my complaints to growing pains.  I was told many times by family members and medical professionals to grow up and to stop complaining.  So, I did.  For a decade.

Fast forward to now, and I am once again vocal about my experiences.  This willingness to speak up – to come out as a chronic pain, fatigue, and depression sufferer – has been incredibly beneficial.  I am now on treatments that greatly reduce my muscle pain and depression symptoms, although I have yet to find a solution for many other symptoms.   I have a supportive husband who understands when it’s me speaking and when it’s the pain speaking.  He has adapted admirably to “physical contact rules” that change daily.  He encouraged me to seek out a therapist, which I was reluctant to do after an extremely negative experience with a therapist in my childhood.  He helps me with whatever tasks I cannot accomplish on a given day.  In short, he is a wonderful spouse helping me through a very rough adjustment period.  The rest of my family, however, is problematic.

When my health began to decline rapidly this past summer, I assumed that my mother and grandmother, both diagnosed with rheumatoid arthritis for at least a decade, would understand what I was going through, and instinctively know how to support me.  This assumption was untrue and unfair; being in pain and watching a loved one in pain are two very different experiences.  So, after many conversations in which I asked them repeatedly not to say some hurtful, untrue, and pointless things*, I sent out an email with a list of the offensive remarks, why they were offensive, and a request that the remarks stop immediately.

Unfortunately, this attempt was unsuccessful.  Every phone call was about my illness, and how I wasn’t doing enough to get better – I should be exercising more, undergoing this or that treatment, stopping this or that medication, finding something I “really want to do”, unlike the graduate school I loved and had to leave because I couldn’t get out of bed, much less get to campus and perform a 16-hour work day, being happier, etc.  Things got bad enough that I attempted suicide in September.  It felt like I was not only losing my physical and mental functions, but my family as well.  Nothing I tried was working, and it seemed that there was no way out.

After the suicide attempt, I turned off my phone for a week.  The first person I called when I felt well enough to use the phone was my little brother – he needed to know that none of this was his fault.  My sister’s 6-year-old son happened to be present, so I got to talk to him, as well.  My nephew noted that it had been a long time since we had talked.  I replied that I was sick and needed to turn my phone off for a while.  My nephew’s response was absolutely perfect: “Well, I’m sorry you were sick, but I’m glad you feel better.  At school, I got a dinosaur, and…”

Why can’t the adults in my life figure that out?  Why is treating someone like a person so difficult, not only for my family, but for people on the street or the bus?  Most of my frustration is not actually born from the constant pain, fatigue, fog, etc. – it is from the rest of the world failing to accept me as I am.  And, given the amount of frustration my illness itself causes me, that’s saying something.

*[Bingo, anyone?]

Recommended Reading for November 16, 2010

Peggy Orenstein for the New York Times Magazine: The code-words of breast cancer awareness

Fast-forward to today, when, especially during October, everything from toilet paper to buckets of fried chicken to the chin straps of N.F.L. players look as if they have been steeped in Pepto. If the goal was “awareness,” that has surely been met — largely, you could argue, because corporations recognized that with virtually no effort (and often minimal monetary contribution), going pink made them a lot of green.

But a funny thing happened on the way to destigmatization. The experience of actual women with cancer, women like Rollin, Black, Ford and Rockefeller — women like me — got lost. Rather than truly breaking silences, acceptable narratives of coping emerged, each tied up with a pretty pink bow.

Ally at Every Crooked Step Forward: Where I Write About (Not) Coming Out

I could have lied. But I couldn’t lie. I didn’t know asexual was anything, then, so I just said no, and then was forced to sit through all the speculation. They didn’t know, and I didn’t know enough to argue with them. People assumed I was undesirable, because of the CP, and I didn’t argue with them, though I wanted to because the assumption hurt, but the hurt was hard to explain, under the circumstances. People assumed I was too brain damaged to understand sex, and I couldn’t explain otherwise, because simply having no desire was enough to tell sexuals I didn’t understand.

Lisa at Sociological Images: Illustrating a “Normal” Life Course

By organizing birth control needs according to age, the slide show teaches viewers a socially-approved timeline for our sexual, marital, and reproductive lives.   Teen sex is invisible, having children in your 30s is ideal, and the end of a relationship is an option but, as Corina points out, not having children is not.

Wheelchair Dancer at cripwheels: Broken

Regardless of the state of Tommy’s mind and body, it is we who are broken.  It is we who drink in glorifications of war and heroism in the movies and kill the political systemic message of such poetry by treating it as individual expression.  It is we who refuse to provide support and systems of support to help our veterans; it is we who shame and silence them into a stiff upper lip.  We are the ones who both stare and look away.  Homelessness doesn’t respond to swelling music and huge parades.  PTSD isn’t best treated by ignoring it.

Crazy Mermaid at Bipolar: Crazy Mermaid’s Blog: NAMI (National Alliance on Mental Illness)

Unlike Breast Cancer with their irascible pink color, and Heart Disease with their “wearing red” campaign, Mental Illness doesn’t have the awareness in the public eye that those campaigns and others such as Multiple Sclerosis or other equivalent organizations.  Why is that?

David Gorski at Science-Based Medicine: Homeopathy for fibromyalgia: The Huffington Post bombs again

As you might be able to guess, because fibromyalgia is a syndrome of unclear etiology with a wide variety of physical complaints, widely varying severity, and a clinical course that waxes and wanes, it is a woo magnet. Indeed, many conditions that scientists do not yet understand well and/or for which we do not yet have particularly good treatments are woo magnets.

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.

Keeping track

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.

Going Through the Motions

I’ve been in hiding.

I admit it.

I’ve been shoving myself headlong into activities that keep my busy, and exhausted.

Still I always feel
This strange estrangement
Nothing here is real, nothing here is right*

“Wow! Aren’t you Supermom?”

Well, not really. It just keeps me occupied.

Just hoping no one knows
That I’ve been*

But really, I don’t have this kind of energy. To run to all these practices and game and meetings. To keep up with the chores. The volunteer events. To make meals. The group photos for people. Bringing snacks and handing out sports drinks. To pack lunches. The doctor’s appointments.

Going through the motions
Walking through the part

I have drawn it from somewhere. But I don’t always have somewhere from which to draw it. I feel like I have had to, though. Because if I didn’t I would have to think about the things that roll around in my mind.

And I just don’t want to do that.

I was always brave
And kind of righteous
Now I find I’m wavering*

It isn’t a pity party, or a call for anyone to feel sorry for me. I can’t even say it is a moment of clarity where I realize the err of my ways and that I will stop this silliness and start taking better care of myself. It’s a little late for that now that events are in full swing and people are counting on me to keep going somehow.

It’s my coping mechanism… however good or bad it may be. We all have them. Mine may just lead to more crashes, a slightly elevated pain med use (which is still well below my prescribed allowance), and periodic bouts of me crying into my pillow at night because I am too exhausted and in too much pain to sleep.

Will I stay this way forever?
Sleepwalk through my life’s endeavor?*

So I keep going through the motions.

Eventually I have to pay that proverbial piper (that jerk), but it keeps me going, in a sense, for now.

I don’t want to be…

Going through the motions

*“Going Through the Motions”, “From Once More With Feeling”, Buffy the Vampire Slayer, Season 6

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?

Things That Make My Life Easier: Black Phoenix Alchemy Lab

[Image description: Four bottles of perfume in front of and resting upon some books; the bottles are labeled “Australian Copperhead,” “Banded Sea Snake,” “Cottonmouth,” and “Asp Viper,” respectively. Image courtesy of Black Phoenix Alchemy Lab.]

Today, I am taking a page from amandaw’s awesome series “Things That Make My Life Easier” and have chosen to spotlight the fantastically scented goodness of Black Phoenix Alchemy Lab. As a person with chronic pain, I have found that certain things having to do with the five senses that take my mind off of my pain — even for a few minutes — makes dealing with pain and fatigue much, much easier. While I am unsure of the scientific veracity of perfume oils and their use in general life-improvement for folks with pain issues (in my case, fibromyalgia, which for me usually causes intense muscle pain and moderate to severe fatigue), I have personally benefited from wearing the complex and often surprising essential oil blends in which the Lab specializes. While smelling nice certainly won’t bring my physical pain down from, say, an 8 to a 1 (on a scale of 1 to 10), many of these blends have helped me to relax, focus on a different sort of physical sensation that is not abjectly, horrendously painful, and generally be more comfortable as I go about my day.

Besides a “General Catalogue” consisting of hundreds of scents—all inspired by a diverse mix of people (comic-book heroes and heroines; H.P. Lovecraft), places (the “Wanderlust” line, which offers scents inspired by famous locales) and things (love [image on page is NSFW], myth and fairy tales, classic art, religion and spirituality, and Alice in Wonderland, to name just a few)—BPAL also offers Limited Edition blends. Currently, they are offering their annual Fall/Halloween scents; if you’ve ever wanted to smell like an apple orchard, fall leaves and smoke, or Halloween candy, one (or more) of these oils may be for you.

It is next-to-impossible for me to pick favorite blends, as mine seem to change by the day. There are a few that I consistently utilize, however: Blood Kiss is a bizarrely dark blend of vanilla, clove and cherry that I’ve been wearing for years (I’m on my third bottle of the stuff). Absinthe is effervescent, minty and (obviously) boozy. When I want to smell sort of like a head shop sans the moldy undertone, a couple drops of Sin do the trick. Aquatic scents seem to be my most-used “category,” with the salty, swampy Bayou being the one that I reach for most often, tied with the Limited Edition Sturgeon Moon (the latter is no longer available, unfortunately). The smoky, slightly citrusy goodness of Carnaval Diabolique (part of a sprawling LE series of the same name) makes for a great late summer/early fall scent, as does the sharp, lavender-tinged Casanova.

Of course, the very fact that I wear essential oil perfumes brings up another issue — how to be sensitive and accommodating to fellow PWDs who may have scent sensitivities, allergies, or who may have otherwise painful reactions to scented stimuli. When I’m planning to be out and about, I tend to wear a drop or two at most, usually applied with a q-tip, and allow ample time for the oil to dry before I leave the house; this is not a perfect solution, but I am still figuring out how to balance the benefits that I personally get from wearing these amazingly-crafted oils with the needs of other PWDs whom I may encounter in public.

I Wonder If I’ll Get Delay of Game…

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…

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.

Recommended Reading for August 17, 2010

Sarah Fenske at the Phoenix New Times: ‘Til Death Do Us Part: They Got Married. Then Everything Changed

This is a love story, albeit one with a medical twist.

Unbeknownst to anyone — including Kevin himself — there was a tumor the size of a Granny Smith apple pressing onto Kevin’s brain.

Kevin didn’t need therapy. He needed surgery.

Patient C: Pain: Attitudes

Often, before I even mention pain to others, I have to overcome classic attitudes I have internalized, the largest being “is this important enough to bother someone els[e] with it?” followed by “am I being a wimp?” I have found that the fear of wimp-dom keeps many people from talking about their pain at all, or at the very least only to those people that are trusted. If I do not trust you, I will never bring it up at all, or I will bypass a pain related issue by making a weak overall health generalization, if forced (which I hate, thank you very much).

Wheelchair Dancer at Feministe: Just Who You Callin’ White

My interlocutor poked me: “Your mama white?” All thoughts of positive interaction slipped beyond my grasp. I knew that we weren’t actually talking about race and yet. Yet, I answered her question literally. My English accent returning more strongly than usual, I talked about my white father and my Afro-Caribbean mother; I spoke bitterly about the loss of Spanish and Creole-speaking family members and English as the language of acceptance. I gave her the history full and square. “Now,” I demanded, “do you think of me as white?”

In FWD-Contributors-Elsewhere news, our own s.e. smith is currently guestblogging at Bitch Magazine’s Social Commentary blog! The series is called Push(back) at the Intersections, and you can read the intro post here. An excerpt:

Feminism has a problematic history. A profound lack of awareness about this history means that we engage in the same dynamics over and over again. For example, the failure of many nondisabled feminists to recognize the history of eugenics in the reproductive rights movement means that it’s hard to understand why disabled feminists feel marginalized by the mainstream feminist and reproductive rights movements. Likewise, a lack of awareness about the history of transphobia in the feminist movement leads many cisgendered feminists to stumble unawares into very loaded conversations.

You can keep up with s.e.’s series of guest posts over at Bitch Magazine!

And finally, my good friend Paolo Sambrano, an amazing artist, performer and writer whom I have known for many years, is looking for funding for his incredible solo show Bi-Poseur, in which he humorously chronicles his experiences with life, death, mental illness, and, in his words, “the quest to write the perfect suicide note.” The show premiered to rave reviews earlier this year, and Paolo is currently attempting to fund a month-long engagement of the show in the San Francisco Bay Area, beginning in September; donations will go toward things like renting theater space, printing programs, marketing the show, hiring a tech person, and more. Here’s some info about the show:

Bi-Poseur [is] a pop-culture encrusted, kinetic look at the intricacies of trying to hang oneself with a Playstation controller, possibly being bi-polar, full scholarships to exclusive Bay Area prep schools, psych wards with twelve year old white supremacists, finally grieving the loss of a parent, motivational speaking, to live tweeting your own funeral. And push-ups. Among other things.

If you’d like to learn more, purchase tickets to the show or make a donation, you can visit Paolo’s Kickstarter page, or his website. I urge you to donate if you can (some neat donation perks are offered at various price points), and go see the show if possible!