cohabitation

Posted on July 26, 2014 by C. M. Condo

I have a roommate.

Not the four-legged, furry kind (“freeloader” would better suit those, as dear as they may be), but a real human. My best and oldest friend is in town visiting for the weekend, and is even now asleep in the bedroom. I slept on the futon in the living room, an arrangement necessitated by the ridiculous hours I keep.

On the rare occasions that someone comes to stay with me, the living room is converted into a second bedroom, furniture rearranged and futon unfolded. Even before I became physically incapable of folding it and unfolding it myself, I had gotten into the habit of simply leaving it unfolded for the duration of my guests’ stays. It gives the apartment a dorm-like atmosphere, even when neatly made. It gently suggests that two people live here and face the whims of life and fate together.

Although I closed the bedroom door shortly after I awoke got up to keep from disturbing the precious occupant inside, I am still tip-toeing around, careful to be gentle with plates and saucers, to speak softly to the cats, to watch the timer on the dryer so I can catch it before it ends with a buzz so obnoxiously loud that it’s audible to the surrounding apartments. While it might feel like an imposition if I had to do it every morning, today I go about my soft business cheerfully. It’s surprising how much comfort I derive from the knowledge that there is a companion asleep in the next room.

I’ve talked about it before, how chronic pain is an inherently solitary affliction. Before last autumn, I often took solace in my quiet home, grateful for the space to relax and stretch out the wrinkles pressed into my idiosyncrasies by keeping them wrapped up in public. But as pretty and welcoming as it is, this place has grown increasingly oppressive as the months have worn on, stifling and cavernous all at once.

An aura of resentment hovers menacingly in the corners, threatening to overtake it, and me, particularly in the early mornings as I putter around, doing light chores and tending to the freeloaders, with no-one to hear the noises I make. The silence is almost palpable as I wade through it; it swallows incidental sounds and amplifies repetitive ones, the clink of a mug lost behind the cacophonous tick of the living room clock.

My friend offered to stay in a hotel, but I insisted she stay here with me instead. Even if I weren’t to sleep as well on the futon (although actually, that wasn’t an issue; it was firm but quite comfortable) my sleep quality has been so poor anyway that it seemed a small price to pay for having another person close by. In return, she has insisted that I utilize her for as many physical tasks as possible, despite her own issues with her hips and neck.

When she arrived last evening, I was in too much pain to make dinner and we ordered take-out instead. I apologized for being such poor company, forcing her to sit in the apartment with me instead of going out for dinner or a drink. She affirmed that she almost never gets a day off and was enjoying the opportunity to simply lounge about and do nothing.  I was grateful; I said as much, although my words seemed pale in comparison to the depth of feeling behind them.

I am so happy to have someone with whom to share this place,  to soothe its sharp edges. I was overwhelmed by her kindness last night as she insisted on clearing plates and tidying up the kitchen, even bringing over the heavy water pitcher to top off our glasses. She is especially altruistic; she always has been, unlike me, who came late to the realization of how fulfilling it is to be helpful to those around me. I am reminded of her essential sweetness, of the comforting quality of her presence that sheltered me during my tumultuous twenties. I have missed her. The pain, the lack of sleep, the burning in my stomach, it is all easier to bear when I have her to lean on, even if only for a smattering of days.

It is like balm on burned skin, this opportunity to let go and be caught and held by friendship, by solicitude, by love; to have a partner to help hold down the tarp as the storm of my injury rages on.

For now, I have a cohabitant, not just for my apartment, but for my affliction as well.

Posted in Aspect I | Tagged , , | 1 Comment

mind vs. truth

Posted on July 21, 2014 by C. M. Condo

It’s 7:30 AM and I do not want to be awake. I’ve been up since around 5:15 (5:12, to be exact), and while I did manage to doze fitfully until 6:45, the sharp stabbing under my right shoulder only permitted partial unconsciousness. I might as well have gotten up at 5:12; I don’t feel any better for having spent the extra hour-and-a-half under the covers.

I don’t like the new sleep medication at all. If I take it by itself, it makes me spacey and slow but doesn’t actually put me to sleep. If I take it with the other one, as I did last night, it renders me unconscious but I wake up six or seven hours later nauseous and mentally out of it, like having a hangover without the headache. I almost never wake up feeling rested, no matter what I take. Most of the time, going all the way back to when this whole mess started back in October, I’m at one of two extremes: coma or doze. True sleep is maddeningly elusive.

I may have a diagnosis, but I’m no closer to repair. The cortisone shot I received this past Friday reduced a fair amount of swelling and enabled me to turn my head and look over both of my shoulders for two whole days, something I haven’t been able to do since last October. In response to having abused the privilege, my muscles are now berating me for it as they return to their former upright and belted-in positions. Additionally, the stabbing under my scapula never really went away despite the range of motion improvements. I’m supposed to call the orthopedist at 8:30 this morning and convey this information, and see whether he wants me to follow up with an arthroscopic MR scan or some other form of diagnostic unpleasantness.

I am nervous about it, like I will somehow be a nuisance when I call, despite the fact that I’ve been specifically instructed to do it. And I have this decidedly unuseful habit of inflating good results and diminishing bad ones when reporting my symptoms, a habit I very much need to break. This morning will be a good chance to practice some unfiltered honesty, even if I really do not feel like forcing myself to be calm and thoughtful to whichever staff member answers the phone. I have to remind myself that the diagnostics are not generally all that unpleasant. They often come with a nice big syringeful of numbing medication for my shoulder. Friday’s injection was no exception, and Friday night, I got the best sleep I had in weeks. That is probably not a coincidence.

Along with the cortisone shot, the high from my new diagnosis has worn off, too. My neck is still a mess, my right shoulder is still clawing at me, my left one is still annoyed at the extra workload, and one of my upper thoracic vertebrae has joined the party as well, poking at me when I hold my head in any one position for too long. My continued lack of restful sleep has pushed me past cranky and I’m on the verge of downright bitchy. I had planned to go to the gym, but my energy is at far too low an ebb for any such thing; in fact, my body is begging me to go back to bed. I would, but there’s no point. I tried that yesterday and got nothing out of it other than an extra hour lying on my back with my two tabby cats. They slept. I didn’t.

I keep thinking about my conversation with Momma Ape from a couple of days ago, about how I feel guilty because I now have a diagnosis, while so many other chronic pain sufferers are still locked in their round, doorless rooms. And even though she is one of those in a circular cell, she wasn’t having any of it. “No, no, no. Your pain has been constant. Right now, you’re in enough pain to keep a regular person home and in bed; you’re just used to it. You’ve definitely earned your place here.” And she’s right. (Dammit, she’s always right.) I’ve paid my dues – am still paying them, in fact, and will be for some time yet.

But our minds have a way of softening even the sharpest memories. A year from now, when my shoulder’s status has been reduced from unrelenting pain to occasional annoyance, will I remember all of this? Will I remember the days before the nerve ablation, lying on my back in the middle of the afternoon, pain filling every crevice of my consciousness? Will I remember how I felt this time last week, shrunken by despair, walled in not just by pain and fatigue, but loss of the hope that my life would ever be any different? Will I remember how I feel right now, exhausted, nauseous, my brain and stomach locked in a struggle with my shoulder and neck to see who can cause me the most discomfort?

Right now, it is easy to recall the feelings of overwhelming pain and despair. I don’t just get bitchy when I haven’t slept, I get emotional and fatalistic, too. I readily empathize with my pre-nerve ablation self, when my stingy resources were barely sufficient to move me from one moment to the next. I still cannot go back and read some of my early blog posts; the memories are like blades, shredding the new skin that has just started to knit over my mental wounds. But what about a month from now, or three months, or six? Will I look back on this and doubt my own sincerity? Will I see hyperbole where the truth once sat? Will I be embarrassed at the naked outpouring of anger, sadness, pain, and resentment?

Doctors ask you to rate your pain level on a scale of 1 to 10, “1” being no pain at all, and “10” being the worst pain you can imagine. But truth be told, most of us (myself included) are unable to conceive of a pain level any higher than the worst one we’ve ever experienced. My nerve pain was a 10 for the first several weeks after this happened. But for someone who has sustained a more serious injury, that same pain might only qualify as an 8, or even a 6. Even for me, up until last October, the high water mark was an ovarian cyst that broke and bled while I was sitting in an algebra class in high school. That was a 10 back then, but right now, it probably wouldn’t clear a 5. Twenty-five years removed, I have to admit I suspect my fifteen-year-old self of overreacting, curled up on the exam table and moaning while Momma Ape squeezed my hand.

Something else Momma Ape told me is that despite the fact that the ten-point scale is different for everyone, it’s still important to the doctor, who needs to know how much pain you feel you’re in because of its effect on your physical and mental state. My pain was real when I was fifteen, and it’s real now, and trying to figure out how someone who isn’t me would rate it serves no purpose whatsoever, especially considering that no matter which end I come at it from, I tend to choose the lower of the two numbers.

Before, I used to assume that someone else would think it was less painful and adjust the number down. Now, I assume that someone else would think it was more painful, but since my own number is lower, I go ahead and stick with that one. Neither of these is actually helpful to me. In fact, Momma Ape has repeatedly advised me to inflate my ratings to reflect my current higher-than-average set point. Just because I can function at the level I would call a 6 (well, sort of function, anyway) doesn’t make it acceptable, or even accurate. My 6 is now probably an average person’s 8, and it doesn’t do me any good to downgrade the rating because of some leftover, pointless desire to appear stoic.

In fact, what the number should reflect is not my level of pain, but my loss of quality of life. Right now, the latter strains the definition, and it’s long past time I learned to speak honestly about it to the doctors and therapists I interact with. Because if I claim it’s not that bad, who are they to argue? They’re not inside my body. They have to take me at my word; there’s no other way for them to get that information, especially now that my physical reactions to pain, such as flinching and facial expressions, have all but disappeared.

Pain doesn’t come with alarms and flashing lights that are visible to the people around us, but that doesn’t mean it’s not there, whatever happens to be going on in our heads in the moment. It’s important, and it’s real, and it’s worth fighting to alleviate. Maybe my lack of sleep is affecting my pain; in fact, it’s likely that it is. But that doesn’t make the pain any less valid. If anything, it makes it all the more urgent that I enlist someone, or multiple someones, to do something about it.

It’s 8:30. Time to call the orthopedist. I am in pain, right now, and it’s messing with my appetite, my sleep, and my state of mind, right now. If I don’t accurately convey that, I can’t expect anyone to feel motivated to fix it. And I deserve to have it fixed. I deserve to be in less pain. Here in the land of chronic pain that I refer to as the Ape Preserve, we all deserve to be in less pain.

Don’t stop fighting now, Ape. You’ve come this far. Take a deep breath, pick up the phone, ignore your mind, and tell the truth.

Posted in Aspect I | Tagged , , , , , | 1 Comment

the beginning of the end

Posted on July 19, 2014 by C. M. Condo

“What about under here? Did they give you a cortisone shot back here, under the scapula?”

My right shoulder throbbed, sending slicing pains up into my neck. My arm was bent down and backwards in such away as to expose as much of the inside of my right shoulder blade as possible, a conformation I had avoided adopting for nine months. The orthopedist pressed his finger into the gap between my scapula and my chest wall. “Right here.”

I shook my head, “No.”

“OK, you can put your arm down.”

The whole right side of my upper torso ached and burned, a cacophony of needles, sandpaper, and hot pokers rattling in my back, shoulder, and neck. I had ridden the subway to his office, both to avoid dealing with morning rush traffic and to ensure I was in as much pain as possible by the time he came in to examine me. I wasn’t interested in a repeat of my experience from a few weeks ago; if I had to engineer a facsimile of the pain I was usually in by 4 PM at 8:00 in the morning for his benefit, so be it. Whatever it took to make sure I was taken seriously.

“OK, so first off, there’s nothing wrong with your rotator cuff,” he began, ensuring that he now had my complete and undivided attention. Finally, someone who understood exactly where my pain was coming from. Things were looking up.

He went on, “What you have going on pretty rare, and I only see it in women with your narrow, lanky build. Your shoulder blade is rubbing up against the back of your chest wall. That’s what’s causing all of your pain and inflammation, and that’s why none of the other treatments around your shoulder have worked.”

What?

That’s it?

“So I’m going to give you a cortisone shot in there, to see if it’s inflammation only or if there’s some arthritis that will need to be scraped off surgically, and we’ll go from there.”

Fine with me. Stick another needle in my shoulder blade. What else is new. Aren’t you enjoying the lovely weather we’ve been having this week? “Sounds good,” I replied.

He fussed around and made a big deal out of the injection, which for me was the current equivalent of a mosquito bite. (Better, actually, since it didn’t itch afterwards.) I don’t know how his patients usually respond, but after the joyful experience of having a nerve ablation, if he hadn’t told me he was injecting a pile of medicine under my shoulder, I barely would have noticed.

The upshot (sorry, couldn’t resist) of his diagnosis is the following: if the cortisone shot works, then it’s simply a matter of physical therapy and anti-inflammatories to put a stop to the pain. If I’m still in pain after in a few days, I’ll need another scan to see if there’s a physical problem that will have to be surgically addressed. But either way, if he’s right, by this time next year, this whole experience will be nothing but an unpleasant memory.

Fifteen minutes to change your life.

I’m not going to be permanently disabled. I didn’t do anything wrong. This wasn’t my fault. He can fix it. He has fixed it, apparently, dozens of times.

Nine months in vain pursuit of the correct diagnosis, bouncing from treatment to ineffectual treatment. Nine months of constant pain. Nine months of insomnia, anorexia, doubt, and despair. And then, suddenly rescued, comically easily, by a comically young and handsome orthopedist, in a matter of minutes. Roll credits.

By the afternoon, I can barely contain my elation. I called Momma Ape. I called Sister Ape. The words were spilling out of me so fast I barely left them time to respond. I’m going to be OK!

This isn’t over, I know. And it doesn’t change anything else that I’ve discovered about myself and my limitations with regards to injury and fatigue. But for now, even the pain doesn’t bother me as much. I’m undoubtedly doing a number of things with my right arm that I have no business doing yet, injured as it still is. I will undoubtedly pay for it in short order. But I don’t care. This news and ensuing release from my dank prison of desperation is worth a few days on my back with an ice pack.

Is it worth everything else I’ve gone through? I don’t know. Once I come tumbling back down to reality, I’ll be facing nine months’ worth of anger and resentment that I will have to figure out what to do with.

But not right now. Right now, after the first night of more than three hours’ sleep in a week, I feel reborn, wet and shiny, loose and smooth, no creases yet from having bent or folded myself into or around anything.

And I dare say, I think I’ve earned it.

Posted in Aspect I | Tagged , , , | 2 Comments

blues before and after (part 2)

Posted on July 17, 2014 by C. M. Condo

Instead of talking about what the new specialist did yesterday afternoon, I’d rather talk about what he didn’t do. He didn’t talk down to me. He didn’t brush my symptoms aside. He didn’t see “nothing remarkable,” about my shoulder. He didn’t think I was an addiction risk. He didn’t dismiss my sleep concerns. He didn’t want me to see an expensive specialist friend of his not covered by insurance. He didn’t make a snap diagnosis before gathering all of the information. In fact, he was unwilling to settle on any diagnosis at all without first hearing from an orthopedist to see if there might be a surgical solution to my problem.

He also didn’t seem too impressed by the doctor I had seen a couple of weeks ago.

“If you don’t have any pain in your lower back, why did he order a lumbar scan?” he asked.

“I don’t know,” I answered.

He shook his head and typed some things into his laptop. “What anti-inflammatories have you been taking?”

“Advil.”

“Nothing prescribed?”

“No.”

More head shaking and typing.  “What was his reason for not changing your sleep medication?”

I explained about the about the physiatrist, the cost ($600 an hour) and the fact that it wasn’t covered by my insurance. Still more head shaking, with an eye roll for good measure.

So now, I have new sleep meds, a referral to an orthopedist, and a prescription for a heavy-duty, big-gun anti-inflammatory. Most of all, I have my sense of self-worth back.

After my humiliation at the hands of the doctor from two weeks ago, the uncertainty has been worse than the [not inconsiderable] pain. I’d picked up all of my old, ineffective coping mechanisms that I’d put down months ago. I stopped calling people. I stopped making plans to see friends. I started second-guessing every choice I made. Stay home or not? Go the gym or not? Add an extra errand to a trip or not? I started coming down on the side of more activity instead of less, ignoring what my body was telling me. I even backed off my meds, worried I wasn’t going to be given enough of them, with the predictable result of increasing pain and fatigue which only deepened my depression. My sleep worsened, my appetite dwindled, and my weight gain plateaued.

I know better. And I know I know better. But I’m still fragile, emotionally as well as physically. I wish doctors knew how much their attitude affects their patients, not just in the exam room, but in those patients’ lives, outside and in, in what they think about themselves, in how they take care of themselves, in how they think about what their bodies are telling them. Self-possession is delicate in those of us in chronic pain, or at least, it is in us newbies. It has to be handled carefully; it doesn’t take much to shatter it. And I’d be remiss if I didn’t laud the small subset of doctors who have been gentle with me, frangible as I am, either sensing or knowing from experience how much effort I have to expend to maintain my composure, and how little would be leftover to repair any damage they might cause.

To be treated callously by a doctor when you’re in that condition isn’t just thoughtless, it’s abusive. I responded to that doctor from two weeks ago like someone who’d been brutalized, immediately reverting back to the self-destructive and self-minimizing patterns that defined my early experience with this injury.  I lost the will to be kind and easy with myself. I went back to trying to force my body to behave the way it would if his assessment had been correct and I didn’t have much wrong with me.  In only a couple of weeks, the effects of his treatment of me and my response to had exacted a noticeable a toll on my physical and emotional health. Had I not sought out another doctor… I don’t even want to think about it.

I was fortunate that the first flash of anger I felt at being so mishandled motivated me to seek out the new doctor and make the appointment that landed me in his office yesterday afternoon. The numb helplessness that supplanted that anger left me disinclined to pursue my treatment any further. I doubted my thoughts, my feelings, and the messages from my own body. I was thankless and petulant when Momma Ape had the audacity to refuse to leave me alone. I was losing the will to fight, and she knew it, and it frightened her, and she pursued me all the harder because of it. It was with palpable relief that I called her last night to tell her something I’d been waiting months to be able to say: “I think we’ve found the right guy.”

The windows are open in my apartment this morning, the recent heatwave having stormed out yesterday and left a cool, indigo dawn sidling up the street in its place. I’m charmed by the notion that even the weather shares my newfound assuagement. My shoulder hurts abominably, having slept poorly after only taking half of the sleep medication the new doctor prescribed (what can I say, I’m a slow learner), but for the first time in weeks, it’s just pain again. Plain, old, ordinary, vagabond pain, no baggage, no hopelessness, no doubt, or dread. Veritable pain, validated pain, pain that someone thinks he can fix, that someone has decided is worth trying to fix.  And unlike the pain in my heart, that kind of pain I can bear without losing myself.  And that makes all the difference.

Posted in Aspect I | Tagged , , , , , , , , | 1 Comment

blues before and after (part 1)

Posted on July 16, 2014 by C. M. Condo

I see a new doctor today. But any hopes I might have had about the tendon damage as a possible avenue for recovery were consummately dashed by my physical therapist this morning. She read the MRI report and said it was unlikely that particular injury was responsible for the cascade that led to my pain.

I kept up my customary chatter, but inside, I was crushed. Because it meant that, storytelling aside, I still don’t have an explanation for the amount of pain I’m in. I managed to keep up a string of a conversation as she manipulated my shoulder, as she always does, trying to pull it back into place against my stubborn ligaments, as she always does, not having any effect, as she always does. I left there an hour later in more pain than I had been when I got there, as I always do, frustrated and demoralized, as I always am.

I wanted to get up and walk out before she even started the manipulation.  I was suddenly overwhelmed by the sheer futility of it. I kept thinking Momma Ape is right. I shouldn’t still be in this much pain. She’s not the only one; a number of friends, including some with chronic pain problems of their own, have been telling me the same thing, for weeks now. And they’re right.  They’re all right.

After all of this time and all of this treatment, I should be getting noticeably better. And physically, my posture and range of motion has improved, and my upper back muscles are starting to come back on line, although they still tire incredibly easily. But my pain hasn’t improved at all. Take away the nerve ablation, and all I’ve done in the last eight months is add to the list of things that hurt, rather than subtract from it.

I leave to see this new doctor in about an hour. I’ve compiled a packet any of my professors would have been proud of; complete treatment history, MRI scans and reports from the radiologists; physical therapy history and evaluation report; blood work; prescription and therapy list noting dosage, efficacy, and whether or not I’m taking it currently; and a contact list for my doctors, physical therapist, and psychologist. It’s A-level work. Not that it matters.

How much hope is too much? How little is not enough? People say not to have expectations, but they might as well tell me not to breathe. What am I supposed to think about, if not the future? It’s not like the past fills me with warm fuzzies.

I’m terrified that the doctor will tell me there’s nothing he can do that hasn’t already been done and I’ll have to keep going, to another doctor, and then another one, and another one after that. And in another six weeks, school will start and I will be no closer to a diagnosis, a treatment, or a solution. So I want to have at least a little hope, some small expectation that something good will come of this new appointment, because the worst-case scenario is so bad I don’t have the emotional fortitude to try to prepare myself for it.

So I will try to busy myself for another hour or so and try to distract myself and maybe squeeze a few tears out before I go, to try to wring as much emotion as possible out of my voice so I can be as dry and clinical as the doctors always are when I get there.

And then I will have gotten through the before. Next comes the after.

Posted in Aspect I | Tagged , , , | 5 Comments

chastened

Posted on July 13, 2014 by C. M. Condo

I woke up at 5 AM this morning and everything hurt. My shoulders, my back, my legs, my neck, everything. I have one gel wrap that stays in the freezer and another I warm in the microwave. I decided to put the heat wrap on my neck and the cool one on my injured shoulder. My other shoulder did not agree with this allotment, but even if I had another pad, I’m not sure how I’d manage to wrap it around my torso. I’m not a big person, and I’m running out of real estate for strap-winding. The left shoulder will have to wait until later.

Probably too much driving yesterday, or more likely, too much everything yesterday, but so what? I hurt every day. I was in a pretty good mood yesterday morning, despite waking up too early in a lot of pain, and so I went to the gym and ran a couple of errands, sunned myself in the front yard for a while, made some cookies, and then embarked on a deep-frying project that took me from the afternoon to well into the evening. It was fun, and now, as always, I am paying for that fun. And since payment is demanded regardless of fun, I figure I might as well have some, at this point. Some days I’m just too annoyed to tiptoe around my injury.

Today, I’m not annoyed, but I’m not sure what I am instead. More like chastened, perhaps. The high of being able to hand a diagnosis to anyone who might inquire for one has worn off rather quickly. I stand here this morning, bundled up in my pads in a dark apartment as yet untouched by sunrise, all too aware that diagnosis or no, I’m still living in the same fragile, damaged frame I had before I read that MRI report. Being able to affix a label to my right (and now possibly my left) shoulder hasn’t really changed anything. I’m still wounded, still disabled, and still struggling under a burdensome load of pain.

And it will still be at least a year before the long-term effects of having a full quadrant of my body locked up for so long will be felt. I will still have to continue along this path of permanent life changes to accommodate a body that injures and fatigues easily; career adjustments, commitment adjustments, and life-management adjustments, not to mention social ones. Most important, I probably should not continue to live alone; my days of doing my own home improvement and lifting-of-heavy-things are likely gone forever. But I can’t even begin to think about what that means, never mind what I should or shouldn’t do about it. I remain too wrapped up in my pity party to do an unbiased cost-benefit analysis. And despite the gift I’ve been given, in the form of a quantifiable medical diagnosis, I still can’t find my way to gratitude.

Even though I should be grateful; enormously so. I have hard evidence that a piece of my body is physically damaged. Finally, doctors can see what is wrong with me. Finally, my pain is no longer suspect. Finally, it is possible that I can be fixed, at least to some degree. I have found a way out of the Hotel California of treatment-eluding chronic pain. I am a rare and fortunate ape. Most of my fellow apes, including the inimitable Momma Ape herself, are destined to remain there for quite a lot longer, if not the rest of their lives. And even though I won’t be good as new, I should get back enough function to take financial care of myself. That particular demon, of remaining dependent on government aid and charity for the rest of my life, has been exorcised.

But old habits die hard. I’m still worried I will walk in to the doctor’s office triumphant, MRI scan and report in hand, and leave deflated, when he tells me that it’s not bad enough to merit going in to try to fix it, or tells me that I need to go to physical therapy for however so many more weeks before he will consider surgery. Or that while my right shoulder is, in fact, damaged, the symptoms in my left shoulder, despite hewing closely to the pattern of those in my right, are no big deal. What if he refuses to perform another nerve ablation? What if he won’t change my meds, despite the fact that their efficacy is marginal at best? What if I still can’t find a doctor willing to help me? How much longer is this going to go on?

I can pile extra trouble on my plate like a linebacker at an all-you-can-eat buffet. It’s always been one of my talents. And right now, I should be updating my injury and medication history for the new specialists I will be seeing over the next few weeks instead of pouring my energy into ramping up my anxiety. But I just don’t feel like it. I can’t seem to shed the mantle of learned helplessness that has lately wrapped itself around me.

It’s hard to let go of the attitude that nothing I do matters, having had it incessantly rammed down my throat for the last several months. I can’t help thinking about it in the same terms I’ve come to think about everything: either I will be fixed or I won’t be fixed, and there’s nothing I can do that will engineer or hinder that outcome in any way. Like a child who kept testing the fire’s heat until she was seriously burned, I am now loathe to come anywhere near it, the wounds still as fresh and tight as though they had happened only yesterday. Why bother? plays back every time I push the button labeled, “What if I…”

What if I what? Whether or not I hand the doctor a spreadsheet of treatments and prescriptions, the only thing he will probably be interested in is the MRI. It may be fatalistic to assume that nothing I say or do will make a difference in what he decides to do, but that doesn’t necessarily mean it’s not true. But I’m not feeling the relief I used to feel at letting go of the compulsion to take an action of some sort.  I no longer need to be able to point to a log of effort in absence of results. But I get no lift from it at all any more. I’m mentally numb.

I thought all I wanted was a diagnosis and purported endpoint, but now that I have them, I don’t feel any less depressed. I thought it would be easier to bear all of this pain and fatigue if I knew what was causing it and how long it would last, but it isn’t. It’s exactly the same, and I’m exactly the same. You’d think I’d have learned by now not to invest my happiness is supposed future occurrences, but apparently not. I know I’m supposed to look inside and not without, to find the contentment, the gratitude, the appreciation for what have rather than the preoccupation with what I don’t. But it’s still dark and lonely in here. I’m still never going to be the same again, and I’m not done being angry and sad and defeated about it.  And nothing I do will hasten along that process.

So why bother?

Posted in Aspect I | Tagged , , , | 3 Comments

patiens emptor

Posted on July 11, 2014 by C. M. Condo

Back in October, I saw an orthopedist for pain in my shoulder that was radiating up into my neck. He diagnosed a pinched nerve in my cervical spine. He ordered an MRI of my cervical spine. It did not show enough nerve impingement to explain my pain. But instead of doing an MRI of my shoulder, he instead chose to believe that I was exaggerating my pain, and decided that a couple of cortisone shots in my neck would relieve both him and me from having to see each other again.

The result of that choice has been an excruciating shoulder injury that has gone undiagnosed and untreated for going on nine months. Nine months of no improvement. Nine months of getting worse, instead of better. Nine months of my life, gone.

Suppose that the original doctor had chosen instead to believe me when I described my pain, and ordered an MRI of my right shoulder. He would have likely have discovered my shoulder damage and prescribed rest and physical therapy. If after about twelve weeks of physical therapy there had been no improvement, he would then have opted to perform arthroscopic surgery, let’s say in January. That means that by now, in July, in the worst-case scenario, I would be six months into recovery, in a lot less pain, and enjoying at least marginal, if not significant, improvements in strength and mobility.

But instead, I’m in excruciating and now worsening pain, just as injured (if not more so due to lack of treatment, and/or misguided manipulations by physical and massage therapists) as I was nine months ago, and still unable to get medical professionals to take me seriously when I tell them how much pain I’m in. And for extra fun, I’m still having to fend off suggestions from well-meaning people – some of them doctors – to try herbal tea and acupuncture and energy healing and other ineffectual woo for my symptoms, which now appear to be due to a strictly mechanical injury.

Am I angry? You’d better believe I’m angry. I’m considering suing the original doctor for sexual discrimination, not to mention malpractice, due to the pain, suffering, and loss of work hours that have occurred as a result of his dismissal of my symptoms. In fact, my overall treatment (if you could call it that) at the hands of the medical community has been infuriatingly impotent. I still have yet to locate a doctor who will take me at my word when I describe the location and severity of my pain and muscle weakness.  If I hadn’t [finally] gotten a shoulder MRI, I’d still be at square one. Or rather, square zero, since square one implies that one has decided to take some sort of action, even if she doesn’t yet know what that action will be.

If just one single doctor had attempted to come to a diagnosis that matched my symptoms, rather than manipulating my symptoms to suit his preferred diagnosis (however inaccurate), I could have avoided much of this pain and suffering. But instead, I’ve been forced to spend agnozing hours on the phone and in appointments with specialist after specialist in pursuit of the right treatment, each time having to muster the energy to advocate for myself against an intimidating array of doctors who would rather protect their egos than heal their patients. And I’ve had to do all this while dealing with debilitating pain and exhaustion, barely able to eat or sleep, for nearly nine months.

What worse, I’m sure I’m not the only one. There must be countless others, and my heart breaks to think of them at the mercy of all those callous orthopedists, neurologists, anesthesiologists, and peddlers of woo.  It’s shameful that so many patients are forced to muddle through a jungle of suspicions, doubt, placebos, and opaque medical jargon in pursuit of good medical care. I’ve had to aggressively pursue various avenues in search of the right diagnosis and treatment, and I’m fortunate to have a science background that enables me to sort through medical terminology. Not everyone has the resources and wherewithal to fight that kind of war day in and day out.

At last count, my pursuit has included six doctors, three massage therapists, and five physical therapists; four x-rays and MRIs; and nearly two dozen cortisone injections, trigger point injections, and nerve blocks, not to mention a nerve ablation. Physically, my body will have endured months of too little nutrition and sleep, and I will have exposed my liver and kidneys to an overwhelming, unrelenting onslaught of pain medications.  Much of this may very well result in some permanent damage, the degree of which won’t be evident for some time.

It’s not supposed to be this way.  Especially here, in this day and age, in a first world country that remains at the forefront of medical science. But, like so many other things upheld by entrenched financial interests, it is this way, and even a thousand bloggers wouldn’t be able to do a thing about it, never mind just one.

So patients, beware. You’re on your own.

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the MRI

Posted on July 11, 2014 by C. M. Condo

The MRI report for my rotator cuff and scapula came in the mail yesterday.  I’d asked for a copy to be sent to me as well as to my doctor. I put off opening it until after dinner.  I had planned to wait until the following day, but the longer I waited, the more anxious I got. I decided it was better to just know, so I slit open the top and nervously unfolded the documents, squinting my eyes, breathing deeply as I made a conscious mental effort to lower my expectations.

I began to scan through, my heart sinking as I read about mild tendonopathy, no injury to rotator cuff ligaments or tendons, no arthritis of the arm or shoulder.  But in the second-to-last item, I was finally handed the one thing I had been waiting for since last October.

An injury.

The MRI showed an abnormal conformation consistent with a tear in the posteriosuperior aspect of the labrum, a piece of connective tissue that attaches the humerus to the scapula. Or, in English, the tendon that connects the top of my upper arm to the inside of my shoulder blade (the quasi-ball-and-socket part of the shoulder) is torn and unable to adequately support that connection.

If that is what’s caused my injury – and no reason to think it isn’t, at least not at the moment – there are some treatment modalities, of varying success, that I was able to locate after I eagerly entered this information in the search engine of PubMed. From what I could discern, the next step may be another MRI, possibly arthroscopic, or with contrast, or both, in order to confirm the diagnosis. If confirmed, since physical therapy hasn’t resulted in any improvements, the tear will probably have to be repaired with arthroscopic surgery. Once surgery has been performed, recovery takes nine to twelve months. And after all of that, a variety of different outcomes are possible, from complete recovery to permanent chronic pain and weakness. I will probably land somewhere between those two extremes.

So that’s the MRI.  Now for the rant…

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never gonna get it

Posted on July 8, 2014 by C. M. Condo

As I parked my car at the gym this morning, I saw a woman who had already pulled in to the handicap space next to mine. She had a permanent handicap hang tag (they’re blue; mine is red) suspended from her rearview mirror. She slid out of the drivers’ seat effortlessly and slammed the front door shut, then walked around the car to get her gym bag, slung it over her shoulder, and strode confidently up to the door, pulling it open with a solid yank that is only a distant memory for my own right arm.

I resolutely pushed the judgmental thoughts out of my head. You don’t know anything about her. You don’t know what’s wrong with her; she could be in chronic pain, too. I walked in behind her, doing my usual left hand door pull, which involves reaching across my body to open it partway, sticking my foot in front of it, putting my other foot across the threshold and then pushing it the rest of the way open with a shoulder or knee so I can walk through it.

About twenty minutes later, I started a set of leg presses on the nautilus machine. The same woman was next to me again, this time doing squats with an impressively loaded bar across her shoulders. Her back was to me, and I examined her carefully.  It was stupid, I know, but I couldn’t help it. I checked for a lifting belt or some other form of back support, but there wasn’t one. I searched her shoulders, elbows, and wrists for a scar, a brace, or some sign of weakness on one side or the other, but couldn’t see any; she didn’t even use a towel under the bar to keep it from digging into her back.

I didn’t stop there. I checked her muscular legs for a knee or ankle wrap, but she didn’t have one of those, either. After her final set of squats, my eyes followed her to another machine, checking for any sign of pain or injury in her walk. Perhaps her neck? A hip? It was impossible to tell; she showed no signs of restrained movement or physical distress, even as she climbed into the machine and continued with more leg exercises. Fortunately for both of us, I had completed my leg presses by that point and moved to a different area where I couldn’t see her any more.

I thought about her the whole drive home. It nagged me all out of proportion to its effect on my life, which is to say, zero. I suspect – but of course I don’t know – that the pass is not for her; she just used it so she could park by the door instead of ten yards away in a regular parking space. But so what?

While I was watching her doing squats with that loaded down bar, I remembered that I used to do squats just like that. It made my stomach turn to think of what that bar would feel like resting across my shoulders right now. I saw her strip the weights off of it and stack them on the weight tree with unabashed envy.

I felt as though she were flaunting her strength and her sturdy body. I felt as though she took for granted the ease with which her body moved, plugged into her iPod and humming along tunelessly to whatever she was listening to. I wanted to walk right up to her, yank those buds out of her ears, and icily inform her that if she was going to use a handicap parking space, she might want to at least pretend to be handicapped herself.  But I didn’t.  I resisted the temptation to be an asshole even as I briefly contemplated keying her car, walking around it to hoist myself into my own and drive home.

Last night, my right shoulder stung and throbbed as I tried to calm myself down enough to fall asleep. The ice pick is back, making good progress as it reaches further and further under my right scapula. My left shoulder, over-burdened and sore, has developed a cramp that I can’t seem to work out. I felt a tear leak out of my right eye and leave a cool streak as it slipped onto my pillow case.

I hadn’t realized I was crying. I don’t want to cry any more. I’m tired of it. I’m tired of bumping around in an emotional dune buggy, surging over the hills and crashing into the potholes. I’m mentally tired of everything.  I’m doing so much work, trying to teach my body how to hold itself in correct conformation, and it requires constant, exhausting diligence. How am I standing? How am I sitting? Are my shoulders hunched? Am I engaging my core to lift that pitcher out of the fridge or pull towels out of the washing machine? Is my neck stiff? Is my weight distributed evenly over my feet? Is my back twisted? Are my hips dropping as I walk? Is my head in the right position? Did I engage my levator scapulae when I reached up to pull that plate out of the cupboard or did I use my infra-and supra-spinatus muscles instead, like I’m supposed to?

If I were getting better, I’d eagerly take on that kind of detailed interest in my body’s every moment. If it was working, I’d throw myself into it as I always do when I embark on a new and challenging project, glorying in the little victories, seeing what I could learn from the small defeats.

But I’m not getting better. I’m getting worse. The high point was May, about a month after the nerve ablation. A noticeable slide began in early June. And now, I can barely sit for an hour. I don’t know if I’ll be able to keep the meager, 9-hour-a-week job I have at my father’s office. The near future is masked by a dull, choking fog; what might be months or years away is completely obscured.

I spent some time yesterday researching technical writing graduate certificates, trying to see if I could do something related to my field of interest that might lead to gainful employment with flexible hours.  But I lost interest after about fifteen minutes. Why bother? Every time I make a plan to assert my independence, it seems, something else comes along to take it away from me. Even my graduate advisor has some misgivings about my continued pursuit of the masters in education, although she’s supporting me on starting the program in the Fall anyway. I still have three classes left before I finish my undergrad, due to having to drop them the last two semesters because of the problems with my shoulder, so I need to at least go back and finish those, if nothing else.

But I still do not know what I will or won’t be capable of come September. It’s not looking promising, but I’m too beaten down to consider alternate plans. Yesterday, out with some older ladies who’ve become a bit of a support group for me, I listened to one discuss her decision to apply for disability due to her inability to work. It wasn’t the first time I had thought of it, but it was the first time I had considered it as within the range of possibilities for myself.

I can’t explain how I feel about it yet, but I can say that none of the feelings are positive. And after seeing that healthy woman at the gym today, ostensibly using a handicap parking space for no other reason than an overdeveloped sense of entitlement, I think about how unwilling I was to get my own handicap parking pass, and how unwilling I still am to take advantage of anything, and how crushing a defeat it will be if that is the only option left available to me.

I’m so damned angry. I’m angry at the woman at the gym, but that’s just projection; what I’m really angry at is everything else. I’m angry at my doctors. I’m angry at my physical therapists and massage therapists. I’m angry at all of the medical professionals who keep telling me that as long as I keep doing what they tell me to do, I will get better.

They are lying to me. They don’t really know. No-one knows. I have been following all of their instructions diligently for nearly nine months and my injury has not improved at all. Now that the nerve is moving back in, my right shoulder is starting to creep up towards my spine again. Worse, I am less and less able to favor it using my left arm, because that arm has become strained and cramped as a result, and now my left shoulder starting to hunch up and forwards, too. If I don’t get another nerve ablation soon, I will be right back where I was last October, as though the intervening months had never even happened.

That means that nothing I have done – taking the summer off, doing all of my exercises and stretches, enduring periods of excruciating manipulation at the hands of my therapists, taking the medications and undergoing the procedures that have been prescribed to me – is working. My care has been palliative, not restorative. So I’m losing my motivation to put up with any of it. What’s the point?

As I lay in bed last night, I wondered about what trade-offs I might be willing to make in order to reach some sort of steady state. Supposing this is a permanent condition, as it is starting to look like it might be, which would I rather deal with: chronic pain for the rest of my life, or surgery that would relieve the pain but leave me truly disabled, unable to lift my arm or reach over my head ever again? I went back and forth. I couldn’t decide. All I knew was that it would be hard to avoid second-guessing either choice.

I spoke to those ladies yesterday about how my faith in some kind of higher power was dwindling as more and more of my life was wrenched from my grasp. I don’t really believe that someone is looking out for me any more. I don’t pray at night any more. I just wait for the next crappy thing to come down the pike, and try to keep from developing any expectations that it will be something other than crappy, in order to save myself the inevitable heartache afterwards.

I honestly don’t know what I’m going to do if I can’t go back to school and can’t work. I will lose my scholarship, and with no other prospects, I’ll be living off my parent’s charity and nothing else, and I can’t do that forever. The thought that I will never, ever be able to be financially independent is so heartbreaking I daren’t court it for more than a moment before shoving it aside.

You think I’d be used to not getting what I want by now. And you wouldn’t think that wanting to get back to living some sort of an independent, self-sufficient life would be an unreasonable expectation. But experience is teaching me that I had better not get my hopes up. Because as soon as I decide can do something, I find out that I can’t, and I don’t want to rule out any more positive outcomes by wishing for or working towards them.

This is what learned helplessness must feel like. I finally understand it. You give up on ever hurting any less than you do now. All you can focus on is trying to avoid being hurt any more.

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nothing I do

Posted on July 4, 2014 by C. M. Condo

I’m not supposed to be thinking about things I can’t do. I’m not supposed to wallow. It’s not good for me. I want to do the right thing. I want someone to tell me what that right thing is, and I will be happy to do it, no matter what it happens to be. But I can’t see it, and I can’t hear it. I just have to guess. And often, I don’t ever find out if I guessed right or not. I could be wandering down a road that leads to a dead end and not know it until I stumbled right up against it.

I drove down to be with my sister’s family for the 4th of July. I hadn’t seen them in a long time because traveling has been so difficult. I love visiting them. They live much farther away from a major city than I do, and I adore the uncluttered views of the mountains, the friendly people, and especially getting quality time with my sister, her husband, and my niece, all of whom I love and am so grateful to have in my life. I planned this trip over a month ago, having successfully made a drive of similar length back in May. It was going to be the perfect 4th; lovely weather, a cookout, good people, fairgrounds, fireworks.

It’s 9 PM on July 4th, and I’m here all right, but instead of eating too much barbecue and watching fireworks with my fingers in my ears, I’m sitting in my hotel room, alone, while A Capitol Fourth plays on TV. I made the mistake of making a plan, and as usual, my injury took that opportunity to remind me how wrong I was in thinking I could take control of a single day in my life.

I woke up this morning a little after 5 AM in a great deal of pain, in both shoulders, probably (although not necessarily) due to yesterday’s drive. It was significantly more pain than usual, and rather than quieting down once I got up and moved around, as it sometimes does, it instead grew more belligerent as the morning wore on.

Nonetheless, I stupidly thought I could handle it. I figured I’d relax at my sister’s for the first part of day, lie down for a bit in my hotel room, and then head back out with the family for the cookout and fireworks. I went over to their house around 10 AM. By that point, I had decided to double up on the usual pain meds. After all, it wasn’t like I’d be performing brain surgery; it wouldn’t matter if I was a little more spacey than usual.

But I might as well not have bothered, because despite the extra pills, the pain increased steadily the rest of the morning and into the afternoon. I hung on through lunch, and then laid on the floor of my sister’s living room with a warm compress, cushions, and my cervical roll, chatting with her while she made sweet biscuits for the cookout. But the positioning and the compress didn’t make make a bit of difference.  By 3:30, I reluctantly went back to the hotel. A couple of hours later, bone-tired and hurting, I texted my sister with my regrets.

Then I called Momma Ape. She is my go-to for reassuring me that I am doing the right thing when I decide not to do something because of my shoulder. I know that she will always insist I was right to prioritize taking care of myself. She doesn’t want me to wind up in her situation, which is considerably worse than mine.

She and I are alike in a lot of ways, both of us inclined to brush aside our body’s warning signals so we can keep doing do whatever it is we want to do.  Without a Momma Ape of her own watching over her, she ignored her pain, or did things in spite of it, for a long time. She doesn’t want me to make the same mistake, a mistake that left her with a much more damaged vehicle than the one I cart around.  So I know I did the right thing, and she reaffirmed it.  But despite her reassurances, I still feel guilty. And lonely, and sad.

Tomorrow, I know I will feel better. I’ll be able to go with my niece to the pool and lounge in a plastic chaise while she splashes around like a little fish like I did when I was her age. I’ll be able to cook homemade tomato sauce and meatballs with my sister tomorrow night. But tonight, watching the fireworks on TV, the camera panning over people singing along to the music and waving flags, all I can think about is how I wouldn’t have been able to do what they did, ride the subway downtown, sit outside on the Mall all day, and cheer and dance in the warm summer evening. There’s just no way.  And I wonder if I’ll ever be able to do those things again.

This is the real downside to this injury. Not the pain, or the inability to perform certain tasks that I used to be able to perform, or even the physical and psychological side effects of all of the medications. It is the frequent and arbitrary sentences of solitary confinement. It is the many times I wind up staying in, alone, while friends and loved ones go out and enjoy themselves.

Their evening passes in a flash of company and fun, while mine drags on, minute by monotonous minute, until I decide it’s late enough to go to bed. And because I’m not moving much, my pain level stays at a dull roar, and I get stuck in my head, hating myself and my life, working myself over about my decision to bow out of whatever party, or dinner, or other evening activity I am missing out on.

Because life is happening out there while I’m confined to my cell. People are with other people, especially on a holiday. They are celebrating, hanging out with friends and family. That’s what you’re supposed to do on holidays. Be with people. Have experiences. Take pictures and share them on the internet. Life isn’t supposed to be lived from inside a room, peering at the rest of the world through windows and screens. It’s not supposed to have these gaps in it where I get yanked away from things I want to be doing, as though I were attached to pain-induced solitude by a rubber band that snaps me back whenever I try to stretch it too far.

And, perhaps worst of all, absolutely nothing I do matters.  Not to my injury, not to me, and not to anyone else. It doesn’t matter if I accept this or not. It doesn’t matter if I go out or stay in. It doesn’t matter if I work or not, or sing or not, or go to the gym or not. It doesn’t matter if I keep plans or break them. It doesn’t matter what city or town I’m in. It doesn’t matter what color my hair is. It doesn’t matter what I’m wearing, or whether my bedspread matches my rug, or if I hang up my clothes in an orderly fashion in my hotel room rather than leaving them wrinkled in the suitcase.

It doesn’t matter how many things I place my hands on that I can ostensibly control; my car, my weight, my toenail polish, the perfect cookie recipe, the obsessively drafted and edited blog post, just so I can feel like I’m handling this, so I can delude myself into thinking I can control what happens inside my body, too.  But I can’t.  None of it matters at all.

My shoulder is f***ed up, and that is what controls my life. Not me; it. There are rare and precious good days, where the pain is low and it doesn’t tire me out too much, and I can run an errand or two and maybe even go out for a short period of time in the early evening. There are hideously bad days where it takes so much effort to steer around my pain that I’m wrung out by the early afternoon.

Most days are somewhere in-between, but no matter what kind of day it is, it’s such a long way from here to the kind of functional I would need to be to work full-time again that I can’t even conceive of a way back to it. My progress, if there is progress, which I’m deciding that there is because I’m unwilling to deal with the alternative, is moving so slowly and imperceptibly that at its current rate, it will be another year or two before a 40-hour-work-week is even feasible.

But if I could count on that, everything would be easier. If I knew, for a fact, that by 2016, I’d be able to go back to teaching, I could handle this and all that goes with it. But I can’t, and I don’t. And that makes it all so much harder to deal with, the pain, the loneliness, the fatigue, the fear. Because in order for me to be able to handle it, it needs to have something I can put my hands on. And no matter what I do to try to fool myself into thinking that it has a handle and I am grasping it, I’m not. I don’t have my hands on anything. And nothing I think or do, or don’t think or don’t do, will change that fact.

I’m wallowing. I’m not supposed to wallow. It’s not good for me. But what else can I do?  Without a future to plan for or a friend to talk to, I don’t know what else to think about. At least I have this blog; I can’t imagine how much more depressed and crazy I’d be without it. I’ve been able to make an hour go away by writing this, and now it’s late enough to go to bed.

The fireworks are over. Another holiday f***ed up by my mindless, tyrannical injury. Because it controls my life now. And nothing I do matters.

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