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.]]>
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?
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.”
“I’ve told [new doctor taking her place] about you to make sure he is up to speed.”
“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 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.]]>
Recently, I had a fantastic experience in a consultation with the oral surgeon who will be — at the time of this writing — removing the three wisdom teeth that I have in my skull [note: by the time this post is up, I will be recovering from the surgery and therefore on a bit of a break from blogularly goings-on]. Given my past experiences with medical professionals, I was not optimistic going into the consultation. I have a pretty spotty history when it comes to dental sensitivity, have been labeled an “anxious” patient in the past because of said sensitivity issues, and thus have a mountain of concerns about surgical procedures because of the medical conditions that I already have — cerebral palsy and fibromyalgia among them. I was fully expecting that the surgeon would either minimize and perhaps outright dismiss my concerns during this appointment; worse, he might actively resist giving me anything other than over-the-counter pain medications for what is known as being a very painful procedure, as fibromyalgia patients seem to have a reputation as being “drug-seeking” among some people in the medical community and in the popular imagination at large (to say nothing of the ridiculousness of getting one’s wisdom teeth removed as a method of obtaining prescription drugs).
Interestingly, this was one of those times where I would be happy to be wrong. The oral surgeon not only explained the actual procedure to me in great detail, but listened very patiently to my concerns about possible issues due to increased pain (possibly relating to fibro, as it tends to flare up after any medical procedure that involves high doses of medication that I do not normally take) and muscle spasms (that would be the cerebral palsy, which has left me with muscular weakness on the left side of my body and occasional spasm attacks in my left leg). He also asked many questions about both the fibro and the CP, and reassured me that he and his staff would watch for things relating to each condition that could possibly occur during and after the procedure.
This consultation — and the oral surgeon’s taking my concerns so seriously — was a welcome break from the fighting-an-uphill-battle-with-my-bare-hands sort of feeling that I’ve gotten from some past medical and health-related consultations. I am, of course, of the opinion that these sorts of positive experiences should not be this unusual, and that they apparently are so unusual gives me pause for a myriad of reasons.]]>
Because what I really need right now is more news pounding home just how EEEEEVIIIIL drugs are and how in danger some of us are of becoming dependent on them!
Especially, WOES! Those poor servicemembers, because they would never ever have a reason to use them. Not with an almost decade of war going on in two countries and the highest rate of PTSD, suicide, TBI, and other things we have ever seen in our troops before.
Now, let me slow down for a moment, because there are some really good things going on here. This nerve blocking thing sounds pretty awesome, but I am not a medical professional of any type unless you were going by the number of dram bottles I have on hand. While I have a lot of not-so-nice things to say about the already “pins and needles” feelings in my hands and feet, I will take that in other parts of my body over what I deal with now thats-for-damned-sure. But the juxtaposition of a new therapy with the whole “drugs are bad, mmmm’kay” meme is wearing on my last pain free nerve. The shaming of opiate use is tired and older than my favorite period underwear.
As more troops return from the battlefield with chronic pain, the military has seen a spike in the number of prescriptions for opiate painkillers. More troubling, abuse of painkillers is on the rise: About 22 percent of soldiers admitted misusing prescribed drugs, mostly painkillers, in a 12-month period, according to the results of a Pentagon survey released this year.
So, how did their magical survey define “misusing”? Taking more than prescribed? One more? Two more? Because you were in MORE pain than that prescribed amount of pain managed and you were having trouble getting an appointment with your PCM to get the dosage adjusted or any other treatment? Anything beyond precisely what is on the label is “misusing” a prescription. The military has an entire month devoted to prescription drug abuse awareness…but what they don’t do much to address is the underlying need that might cause servicemembers to resort to such a thing; the fact that they might be in pain and they might not have doctors paying attention or being able to pay enough attention to them or their pain.
At the VA hospital in Tampa, all patients taking painkillers are incrementally tapered off them, Clark said.
Because chronic pain never completely goes away, the hospital’s staff emphasizes physical rehabilitation to strengthen muscles and joints near the pain source. When the injury involves the brain — as in PTSD and mild TBIs — the focus is on treating symptoms that could exacerbate pain.
“Pain may make it more difficult to treat those issues,” Clark said, because “all these things interact.”
But what about the remaining pain? The article never goes on to address what is done for that remaining chronic pain. You know, the pain that never goes away. Because we know that just sucking it up doesn’t work in patients who have chronic pain, and if all patients on painkillers are taken off of them over time…well then, what the hell is actually being done?
This new treatment sounds great for the people to whom it is available, and for the people for whom it will work, but let’s not jump ahead of ourselves and pat ourselves on the backs pretending that this is some magical solution that has suddenly rid us of the need for those nasty opiates or narcotics that are JUST. SO. BAD. FOR. EVERYONE. (You fucking addicts! I mean, c’mon, you were all thinking it!) (Right?) Dr. White is one of only six doctors who do what he does, and the article doesn’t say that the others offer his fancy treatment, nor does the article make any mention of how many civilian specialists are working on this treatment.
I worry that the VA and other military treatment facilities will look at this as a sign that they should be able to deny more patients painkillers. Progress will mean exactly nothing if it sacrifices patient care or hinders the quality of life of patients in chronic pain and with life-long illness and injury. While this article correctly talks about how chronic pain is processed differently by the brain not every uniformed doctor and military medical professional subscribes to that theory, and what the military doesn’t need right now is more doctors, medical professionals, or hospitals bragging about how all of their patients are off those evil, bad, no good drugs without offering them real help.]]>
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.
The office I work at is lit by fluorescent lamps, which can trigger migraines for me, but the light level was reasonable enough that it wasn’t a problem up until that point. Last time the maintenance guy came through to replace the select few old-and-broken lights, I asked him to twist the bulbs above my desk so that they would dim or turn off, and he did so, and I was extremely happy. The lights were ok when they were on, but the new lights were already making my head hurt just having been replaced a couple dozen feet away. Now, my desk was a safe and comfortable space and I could work without that particular disruption.
Around Christmas, the safety coordinator in my office — who seems to dislike me, demonstrated well before this incident, and repeatedly since — took up a new pet project: replacing the lights. The safety coordinator decided that every single tube in the office needed to be replaced with brand new tubes at double the former intensity. And not only that: previously there had been two tubes per light; now, she wanted to fill all four tubes, in every single light, with that brand new double-intensity fluorescent lamp.
I arrived at work the day after the lights were put in, and I lasted five minutes at my desk before I had to stumble away. I was having an asthma attack (and I cannot use inhalers); my stomach was churning violently; my eyes were throbbing, and I actually lost vision altogether for a couple minutes — and my field of vision was covered in multi-colored spots for hours afterward, and my eyes were blurry and out of focus — I could not make my eyes focus, anywhere, not to read the screen in front of me or the clock on the opposite wall.
Five minutes. The time it took to boot my computer and email my supply person asking if my lights could be changed.
The answer was no, which marked the start of a months-long ordeal with Human Resources (which consists of three people, one of whom is the safety coordinator whose pet project this was in the first place). They told me that if I wanted it resolved quickly I shouldn’t file an ADA accommodation request, and then stonewalled me and eventually told me the only way to resolve it was to file an ADA. They told me it would be useless to make any change because “what if she moves somewhere else” (um, I work a specific program, do not have the job title to work anything else, and this program has never been anywhere other than this area of the building). Eventually I found out that at the safety meeting that preceded this decision, my supply person (who is an assistant back in the administration/HR area) raised her hand and specifically said, “Amanda would prefer to have her lights turned off, because it aggravates her migraines” — remembering when I had requested this of the maintenance man — and one of the union stewards, who knows I am disabled with a chronic pain condition, replied, “No, we can’t do that, we have to treat everybody exactly the same. No one can be treated differently.”
I had taken the initiative to move myself to the one desk where the lights were burning out almost immediately — checking messages on my phone every ten minutes and continuing to do the same work I had done before. On the day I left for two hours for a doctor’s appointment, HR chose that time to hold a meeting with my supervisor to relay the order that I return to my normal desk, as it was, no change to the lighting situation — and I was advised that refusing a direct order was a fireable offense.
I was “allowed” to wear sunglasses in the office, which merely delayed the onset of my migraine by a couple hours (primarily the eye strain from trying to read and operate a computer screen with sunglasses on, secondarily the light itself); I was leaving work early more often than not. The safety coordinator at one point came over to sit down at my desk and ask me — gesturing with her hands held over her brow, parallel to the ground — “Can’t you wear one of those — what are they called? –” Sigh. “Visors?” “Yes, that!” No, it wouldn’t, because the light was glaring off my desk, the windows, the file cabinets, the walls — blocking one direction of light in that situation would be like trying to take a shower with an eyedropper. She was unsatisfied with this answer and walked away. (Of course, if I had tried to use “one of those” before she came up with that bright idea, she probably would have called another meeting to order me to stop violating the dress code.)
My specific accommodation request — to simply twist the bulbs so that the lights above my desk were off — was eventually denied because nonharmful lighting would be a danger to the workers around me (all five of them hated those lights and had complained to HR about them as well!) — the difference between the old and new lights was like the difference between a sunny summer’s day and the surface of the sun; it’s already very brightly lit. They decided to order a cheap full-spectrum filter — and tsk to me that they would have to see if it was in their budget — that specifically advertised that it only reduced the light’s brightness by some trivial amount. I protested to them repeatedly that it was the brightness that was the problem, not the color of the light, but they would not allow any change to the brightness. Safety concern. Turned out I was still getting migraines, so they gave in to my tired request to order the gradient sleeve filters that were listed immediately under the original filters they had bought. And that worked. By… reducing the lights much as if they had been twisted off. As I requested in the first place. Which would have cost precisely nothing.
Well, it’s worked well enough since then. And since, ahem, the ballast was broken on a couple sides trying to install four sleeves on two sets — the lights are connected such that if one light goes out, its companion on the opposite side does too. So that took care of four lights for me. Of the four remaining, the gradient sleeve is turned to provide an amount of light I am happy with. And all is well.
At least, it remains well when my desk is of any use to me. But when my motherboard blows a couple capacitors and my computer is out for the count during one of the busiest weeks in our program, and I’m already marked as a Troublemaker by HR and thus do not want to go around swapping computers by myself, all of a sudden I’m right back in the same situation I started. Now a few of the new bulbs have dimmed with time, but it’s all shaking my stable footing in terms of pain.
My coworker offers me her desk, because she is spending most of her time upstairs. It is the desk next to mine, across the aisle. The desk in the corner of the building, with twice as many windows, and fluorescent lights that have not dimmed a bit, remaining significantly brighter than any in this quarter of the building.
I take it for the first afternoon, when my computer has just died, because it’s the only space available. And I pay for it. Because I’m seeing spots again by the end of the workday. My stomach is doing acrobatics and I’m afraid I’m going to vomit all night. It’s hard to breath, hard to think, hard to focus my eyes. Sensory overload, feel like I’m going to explode.
This was early in the week. I spend the next couple days parked at someone else’s desk, until that person comes back to work and I am deskless again. My coworker offers me her desk again, and I decline, saying “I can’t sit there because of the lights.” Oh, okay, she says.
Until the next day, Friday, the busiest day, when I am rushing around coordinating things for a dozen different people and being yelled at by clients all the way — using the maddeningly slow and unresponsive computer connected to the printer/scanner/fax equipment in the station next to my home desk. Seeing my frustration with this instability, my coworker again offers her desk. And again I decline. And this time, she throws in: “Well, if you change your mind, you can have it!” In her sweet, quiet voice, and she heads upstairs again.
Because this pain is really ultimately a personal decision.
This is the person who, sitting at that station computer scanning, asked me sweetly if I could turn my desk fan so it would cover her too (the building’s climate is very poorly controlled) — and I agree, because the air will still hit me and it is, seriously, really hot in here — but finishes her request with a laugh, “since I can’t have any light here.”
Sweet and quiet.
Sometimes, the people who are going to hurt you are easy to identify. Like my safety coordinator, who has tattled over the most trivial and frankly inaccurate things to my supervisor (who knows she is full of shit).
Sometimes, they aren’t.
I can never trust anyone to understand.
This knowledge always hangs in the back of my mind. It is disturbing, in the sense of creating unrest, destroying stability.
On the other hand, truly accepting it could free me — no more time spend artificially dividing people into categories of “Volatile, Will Probably Hurt Me” (focus all energies on protecting self from these!) and “Safe, Would Not Hurt Me” (so tired from the first category, no energy to protect self on any measure around them) — now I can spend that time and energy centering myself and my needs, thinking about what I really need to protect (from anybody), what I’m ok with people knowing — and even focusing that energy on becoming ok with those facts of my lives, myself…
But the eternal vulnerability can wear on me. Disclosing something one time means being vulnerable forever — the moment of sharing, the interaction may pass, but the knowledge can be used against me at any time. It can come up at any point in the future. Once I make the decision (not that there’s always a choice) to disclose something, I let it go forever — the knowledge is free in the hands of the people around me, and I can never take it back.
I could go on a decade-long effort to refocus on invisibility, on passing, on keeping secret — I could purge my social circle, present myself as totally normal and hide anything that might indicate otherwise — and all it takes is one person, saying one thing, to crumble that carefully-built structure in an instant.
The first time anybody knew I was sick — oh hell, people knew before I even got diagnosed at 12 years old! — that shell was cracked, and I never know if, when, it’s going to shatter, burst wide open. In fact, I can probably count on it happening, at some point in my life. Probably the least opportune point when it will cause the most damage, right?
No matter how careful I am, I occupy a precarious position.
It’s hard to accept that there is always going to be a wall there when I make personal connections with the currently nondisabled. Their knowledge can only go so far. They can be friendly and supportive, but they come from a fundamentally different place. And that means that at some point, they will do something potentially hurtful. Not understanding that it is potentially hurtful. Because they can only go on their own experience.
So even with people who might be friends — or at least friendly acquaintances — I have to have that wall. That knowledge of potential hurt. With all the weight it carries.
It’s a price I accept — rather than the price I try to deny, and end up experiencing anyway.
Conflicting accommodations do not always mean that the conflict will occur between separate PWDs. For example, on a high pain day, I am in desperate need on my cane due to the intense pain in my hip and legs in general (though, which leg I want to use if for is debatable, even though I favor one hip). When I am that fatigued, however, using the cane is an intense use of my spoons, to the point where if I have too much to do I can’t even bother because it just winds up with me on a chair or bench in tears. Or the cane causes additional pain in my back or shoulders.
There are others that come to mind. My medication provides me with more pain free days, which is a good thing. This is an active choice I made with the advice of my doctor whom I was lucky enough to find at this duty station. The flip of that coin is that I have side effects which means that I can not always drive places, or have the energy (HA!) that I want to do things with my family, to name a few. This might not sound like a huge accommodation, but it makes a great impact on my family life, people who play a huge role in my care.
I know that some people use caffeine to both relieve some pain and migraine effects (I sometimes do) but that this has the crash effect at the end of the day (for me it means my spoons run out faster).
So, gentle readers, what accommodations do you have/use that conflict…uhh…internally? What individual needs to you have that you have to weigh daily?]]>
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.
*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.]]>
Army Medic Pharmacist: One moment.
Me: No problem, Specialist. (I am well aware that two of my three expected prescriptions require me to wait as they are counted, twice, some other fun stuff, though I no longer have to run around to get them, and have to be signed for, so I amuse myself by reading the literature he hasn’t bothered to hand me yet.)
[AMP returns with the Civilian Pharmacist]
Civilian Pharmacist: You have taken pregabalin with topamax before?
CP: What about this antacid?
Me: No. But I assume it is the same as my previous one.
[I sign for one med. CP hands me two bottles.]
Me: There should be a third script.
CP: No, only the two.
Me: There should have been a vicodin script as well.
[CP raises her eyebrows at me]
CP: You are on pregabalin.
CP: That is a time released pain medication.
Me: Yes ma’am.
CP: You don’t need vicodin with a time released pain medication.
Me: With all due respect, ma’am, I usually have both.
CP: Well, there isn’t a script for it, and I don’t think you need it.
Me: Well, ma’am, there should have been one, and I am going to ask you to call my provider about it.
[Staring contest ensues between Me and CP. I win. CP picks up phone and asks AMP for Dr. Awesome’s number. I can hear Dr. Awesome on the other end apologizing for forgetting the script, that the computer wasn’t working right when I was in her office, which it wasn’t, and that she forgot to put it in before leaving the office, and would put it in the next day she was in.]
CP: Dr. [Awesome] apologizes for your inconvenience. You can pick up the script on Monday.