Well, she’s not my doctor, she’s — well, you’ll just have to read what’s below the cut.

This is written in the form of a letter to the clinic, but obviously I won’t be sending this. My husband is helping me work on a somewhat more concise and professional letter that focuses mainly on my treatment by the doctor in question. But when I’m in such a state, I just have to get that jumbled mess out on paper, damn any sort of structure, style, or organization. This is what came out.

Names have been changed to protect… well, me more than anybody, really. Dr. One is my regular GP, and Dr. Two is the doctor I saw Friday. Part 1 is probably the most, er, concise (if the word applies, really) version of my history with fibromyalgia all in one place. Part 2 is the story of what took place Friday.

Here ye go.

***

To Dr. One, the nurses and staff at the clinic, and Dr. Two if she cares to read.

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Hi. Let me introduce myself. My name is Amanda. I am a twenty-three-year old California native, a cat lover, photography hobbyist, Kinks fan, recent hockey convert.

I was diagnosed with fibromyalgia at age 12. It didn’t mean very much to me at the time, except that the phrase “504 plan” became part of my vocabulary and my phys ed teachers stopped giving me D’s. My mother had it, so I always knew about it growing up, and everybody had an inkling about me. My preschool records note that I had trouble with coordination but that I was inquisitive and quick to learn. It was never outside the realm of possibility that I’d end up with it too.

I never really thought much of it. I told myself that it didn’t affect me, that I was like everybody else, and I assumed any failure was one of will and character rather than one of physical condition. Against school policy, I carried my own small bottle of Tylenol for the very worst of pain, but I hated to even take that. (I hated even more the couple years in my early adolescence when a pediatric rheum that neither my mom nor I liked very much tried me on any number of drugs, Desyrel to Ultram to guaifenesin.) It was admitting that something was wrong.

That became a problem later on. After several weeks of absence my senior year due to back pain that made it a struggle to sit upright, then two months of stuttering attendance as I tried to recover, I had to spend my last month of high school catching up my failing grades (from a 3.8 grade point average previously) to low C’s, the lowest grade my college would accept. I was still taking make-up exams the day before the graduation ceremony. And college didn’t last long, either. Six weeks in to my freshman year at Cal State Fullerton, I found myself confined to bed, unable to so much as stand up the five minutes it took to microwave a Hot Pocket. I lived off of a loaf of bread at my bedside for a week until my mother could take me back home, where I spent three months no longer confined to a bed, but still confined to the house – a five minute car ride was too painful, much less whatever I was supposed to be doing outside the home.

I was very fortunate to have a good rheumatologist, Dr. [omitted] in Beverly Hills – who, along with his office partner Dr. [omitted] and the entire office staff, had watched me grow up as my mother (unable to afford a baby sitter) took me with her to her appointments with Dr. [omitted] several time a year from when I was old enough to remember it. Dr. [omitted] encouraged me to enroll in the clinical trial for pregabalin. It was showing promising results in fibromyalgia patients (at a time when tricyclic antidepressants were the best pharmaceutical treatment available); the medication would be free for the duration of the trial, and I would be reimbursed for travel expenses. I was severely depressed, facing up to my physical limitations and mourning all the things I found myself unable to do. What other options did I have?

The first phase of the trial was double-blind, so I had no idea whether I would get a sugar pill or the real deal. But – requisite caveat about the placebo effect here – within an hour of taking my first pill, I felt… well, not normal, but a hell of a lot closer to it than I had felt in years. I was still a teenager.

Turned out it was the real deal. I’ve been on it ever since and it hasn’t stopped working. It is the basis of my treatment. It isn’t an artificial “high.” It’s more like it levels me out. It brings my pain threshold closer to normal – so I don’t feel as much pain in the first place – rather than covering over pain that has already occurred. I have had a couple times without it – crappy health insurance meant I experienced a delay filling my medication at least once every couple months – and I can tell the difference. It is a generalized pain all through my muscles and skin. It feels like the air is thicker around me, and it’s harder to push myself through it.

I’ve lived with this condition for 23 years now. It changed my life course completely. I’ll never earn a college degree. I’ve had to take a step back and take the time to learn how my body works, and how to work with it. I can identify all the different types of pain – the sharp pain of injury, the tight pain of muscle tension, the pulsing pain of headaches, the all-over pain when I’ve simply worked my body too hard.

And I’ve experimented with different treatments. Many different treatments. I am young, but to be blunt, my short 23 years are still 23 years more with this condition than a healthy person has. I do my research and try to learn as much as my layperson’s mind can handle, but I also keep a sense of openness, deference to those more knowledgeable than I, willingness to listen to people who might have useful input, awareness that I am not a doctor and I cannot make those decisions all on my own.

I make sure to practice good sleep hygiene. I go to bed around the same time every night. I get 8-9 hours every night. And I put great effort into keeping my sleep environment safe and comfortable. I get light but regular low-impact exercise. I try my best to eat well (being fortunate to have a husband who likes to cook). I pay close attention to identify things that make my pain worse – like clothing that is too restrictive around my tense shoulders or too tight around the hips, or extreme levels of noise, or certain chemicals and perfumes – and I eliminate them from my life to whatever extent possible.

Every time I visit any doctor’s office, I am asked if I drink or smoke. And I always answer no. I drank Pepsi on my 21^st birthday. I’ve never set foot in a bar. My best friends in California were the sort of people who go out for the latest Pixar movie and some ice cream (maybe a Jamba Juice fruit smoothie if we were feeling fancy). Here’s the thing: I already take enough legal drugs just to be able to grocery shop with my husband every week, and if I’m lucky, work a regular job. Just to achieve a semblance of normalcy. I’m going to be frank: why in hell would I want to fuck that up experimenting with other substances? I don’t take this shit for pleasure. I take it so I can live my life.

I was nervous the first time I set foot in your office. It’s hard to find a good doctor. You have to be able to communicate well, to listen and to understand each other, to exchange ideas both ways. A patient’s relationship with her doctor is a relationship. Which means that sometimes the quality of that relationship depends on issues outside the empirical: it depends on communication style, on compatibility at that basic, human level. Which means, no matter how knowledgeable and skilled the doctor, the choice is a total gamble.

I selected your office based on a cold call to doctors around the area who accepted my insurance. And, being unable to determine a doctor’s skill and knowledge from outside the office walls, knowing it would be a gamble and it may take a few tries, I decided to pick an office based on the staff. I deal with the nurses more often than the doctors; I need to get along with them on that basic, human level, too. And I was very happy when someone picked up the phone when I called for my first appointment. And I’ve been happy ever since. Everyone at your office has been courteous, friendly and approachable, easy to interact with – and very good at their job! I know it is a thankless one oftentimes too. It might sound strange, but I’ve been wanting to bring over a plate of cookies and a thank you note for over a year now – life just always gets in the way. But I appreciate everything they do.

And I think it speaks multitudes for me to point out that it is only since I began to see Dr. One that I have been able to work a regular job. Before that, I struggled to work six hours a week as a restaurant greeter. With Dr. One’s help, I have been able to do more and more with my life. I meant to seek out a separate rheumatologist, but never got around to it. I do know he hasn’t been happy with every treatment choice – my six-month jaunt on Lupron, taken under advisement from my gynecologist – but he has been very supportive. I trust his judgment.

During my initial visit with Dr. One we discussed my medication. He made it clear that he does not like to prescribe narcotics for chronic pain. He said that he will refer a patient to a pain clinic before he’ll ever write that script. And I understood that position. I don’t like to take this stuff. I don’t like the artificial mood lift it gives me. I don’t particularly like the way it works. It’s definitely not the best way to treat my pain! But Dr. One seemed to understand my situation: I was already doing most of the other things I could do to address my pain, and I still struggled. What else could I do?

And he has worked with me. We have adjusted the rest of my medication multiple times, trying to find ways to bring me a bit closer to “normal” without using the narcotics. I’ve tried a few things that were new to me. Recently Dr. One helped me procure a personal TENS unit. It has been a huge help – the driving force behind my ability to finally work a full-time nine-to-five job. It alleviates my back pain and reduces the amount of painkillers I need to take. I call it my little lifesaver.

Suffice to say, I am doing what I can to reduce my dependence on the painkillers. Let me again be blunt: I’m not looking to get high. I’m looking to live a life. I want to be able to pick up after myself at home, to wash a sink full of dishes and run my laundry once in awhile. I want to be able to go grocery shopping once a week with my husband. And once I’m able to do that – for which I already needed an average of one and a half Vicodin per day – I want to be able to work outside the home. I don’t even give half a shit what it is. I’ve worked my way up the ladder from involuntary two-time college dropout to entry-level state file clerk. People at work try to tell me I should get an easy degree so I can move up to a higher level job, because I obviously qualify in every other way. They think I can do better. They don’t realize I’ve already been working my way up for years, and this is the best damn thing I’ve ever been able to do, and you know what, I’m fucking proud of myself for it.

This doesn’t even account for the very occasional Penguins game or dinner out with my husband. My energies are almost always focused on the strictly practical. Because of my history, I have a serious appreciation for the practical. What comes to you naturally, I have to work for.

And yes: to be able to do these things, I need the Vicodin. I need the 300mg Lyrica, 150mg Effexor, 300mg tramadol, 30mg cyclobenzaprine, the low-dose hormonal contraceptive, the collection of portable and home-use heating pads, the TENS unit, the eight hours uninterrupted sleep, the regular walks or Pilates sessions, the shower chair, the carefully-selected clothing, the myriad and varied pillows, the breathing exercises and stress-reduction techniques, the pleasure of a purring cat by my side and the support of my caring, understanding, encouraging husband.

I need all of those things. Each is a part of my pain management routine. Vicodin is but one part – but that doesn’t mean it is an unimportant one. Even with all those other things, and other treatments and techniques I’m sure I’ve yet to even discover, I struggle with pain and fatigue. This is life with a chronic pain condition. There are no simple answers.

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At the end of November 2008, I began a new job with [omitted]. I took the civil service exam in June and interviewed with ten different state and county agencies before Gov. Rendell’s state hiring freeze forced me to start my job search all over. Fortunately, [my agency] already had the authorization to hire [my position]. I jumped at the chance, not having many other options. My interview went well and I was one of two clerks hired, the other for their [omitted] office.

It is my first full time job. I worked retail before, and the constantly shifting schedule was hard on me. The structure of a Monday through Friday, nine to five job was a Godsend for me. It takes a lot out of me – I go to bed between eight and nine o’clock every night, after leaving work at five. I can’t do quite as much around the house. But it’s a worthwhile tradeoff. This job is limited-term, meaning I work only through the winter, then rest during the intervening months, most likely collecting unemployment. It’s a stable job, no constantly-changing hours and surprise new responsibilities. And it’s a state job, which is valuable to me in a way most people don’t have to think about: I know that the chances are my supervisor will be understanding of my disability, and will work with me – and that if they don’t, I know the state will not tolerate it. The pay is good, the people are great, and I’m doing something with myself. I’ve been working toward something like this ever since I first had to leave college and face up to the fact that I was not just like everybody else.

When I began the job, I scheduled an appointment with Dr. One to ask him to adjust my medication. Over the previous four years, as I added the various medications listed above to my daily regimen, I have taken Vicodin regularly. I take it on an as-needed basis, averaging out to a certain number per day. I need less on the weekends now, for instance. Until I started seeing Dr. One a year and a half ago, I averaged 1.5 per day. That allowed me to do basic self-care and work a very limited job which took a moderate physical toll. With adjustments to my Effexor and the addition of the tramadol, I was able to work 25-30 hours a week, in a retail environment – while we were short staffed over the Christmas season, even – with an addition of one half a Vicodin per day, to an average of two.

That average held constant until I began my current job. I asked Dr. One to allow me one more pill per day. He agreed, whatever his feelings on the treatment, and I am sure with caution and an eye on my usage going forward. The first month went well. I settled on a schedule: one half pill each two-hour break interval, coming out to five half pills, or 2.5 for the day. That left me half a pill per day in case anything happened, or in case there was something important I needed to do that weekend that was going to take a lot out of me.

And I called in my first refill right on time. I felt pretty good about it. I was seriously increasing my physical burden with a significant but small increase in my painkiller use. I was still adjusting, but it felt like a good balance.

This last month wasn’t as good. I had a couple headaches – not a mere annoyance for me; they quickly become miserable weeks-long ordeals that severely restrict my ability to go about my life. And that messed with the schedule I had set up. It took me time to regain that balance. And it left me several days short when I came to the end of my bottle.

I called in to refill about a week early, as I always try to do, because, again, something almost always comes up, and if I wait until the last two or three days, I’ll probably be going a couple days without. It was too soon, though, which I understood. I was anxious, because it did mean I had to take the last two days of the week off. I was fortunate to have an understanding supervisor, and to be limited-term with no benefits and therefore no leave requests to wrangle.

On Wednesday, after my last day of work that week, I stopped in to make an appointment with Dr. One. I wanted to talk about the last couple months and see what ideas he had. I thought that I would be fine for the next month if I watched it and stayed on that schedule I had set, but it has been my habit over the last four years that those few times I face some time without the aid of the pain killers, I reevaluate to make sure everything is OK, the balance is right, and if not figure out what to adjust.

When I asked for the appointment I was asked whether I had to see Dr. One. I responded that I preferred him, because I had been seeing him for a while and he knew my situation well. I was given an appointment Friday at 10:30, earlier than I thought I’d get – a pleasant surprise.

When I arrived on Friday I was informed that Dr. One was not in that day, and I would be seen by “someone else.” The nurse took me back and I waited a few minutes before Dr. Two came in to the room and asked me what I was there for.

It’s never easy with a new doctor. Let me get that out of the way. However competent and understanding the doctor, fibromyalgia is a complicated condition that is commonly misunderstood due to its inherently vague nature (at least until it is researched a little more deeply). It’s difficult to get a good understanding of a fibro patient’s condition based on a sixty-second summary.

I started to explain that I had just started a new job. I tried to explain the adjustments I was making. I was trying to flesh out a somewhat accurate picture, so that I could have a productive discussion with a knowledgeable professional about how things looked and what to do.

I do not exaggerate when I say I didn’t make it twenty seconds before Dr. Two interrupted me. And I’m going to do my best to transcribe the ensuing conversation as close to verbatim as my memory can get. She said, “You ran out of your Vicodin early! I’m going to stop you right there and tell you something you aren’t going to like.”

“Let me guess, you don’t use that for chronic pain.”

And she looked me in the eye and said, loudly and forcefully, “Are you crazy? You are ADDICTED!”

“You are 23 years old and you’re using a narcotic? Vicodin is dangerous!”

It was very obvious to me at this point that Dr. Two had no interest in listening to me, in understanding my individual history, in having actual two-way communication. I was upset. The last thing I needed at that point is to get yelled at by a doctor who had hardly spoken two words to me before this.

I said, just as loudly, “Have you lived in this body? Have you lived with this condition?”

I told her, “You do not know my condition, my background, or my history, and you have no right to speak to me this way.”

She was telling me “I am going to send you to rehab,” “You are ADDICTED” and further admonitions of the dangers of narcotic painkillers.

I was upset and had no intentions of sticking around for a lecture from someone who wasn’t interested in my actual condition. I got off the exam table and opened the door while she was still yelling at me.

I repeated that she made no effort to actually understand what I was trying to communicate. She wasn’t listening to what I was saying, instead insisting loudly as we both walked out of the room that she didn’t care what I did but she would never be the one to give that to me.

I grabbed my keys out of my pocket and walked out the hallway, with a short and frustrated “Fuck,” and called my husband – the person who had persuaded me to talk things over with Dr. One in the first place.

I apologize to the staff for the disturbance. They have been nothing less than professional and respectful and they did not deserve to deal with that.

I am still upset. I do not have the mental or physical energy to write out a more organized, formal letter. I do not think it was remotely professional to treat me in this manner. I am not a junkie. I am a chronic pain patient trying to manage my varied conditions and live a small and simple life between them. I have made every attempt to be open and honest with my doctor. I want the best results, and those cannot be had without an open communication system. I have done my best to be open and honest with myself. It is very important to me that I practice intellectual honesty, that I do not deceive myself, that I keep an eye on my condition at all times and make an honest effort to correct any problems that crop up. And I share, open and honestly, with my doctors, what is going on in my life, how I am dealing with it, how well it is working or not working.

And I listen to what my doctors tell me. They have the professional degree; I do not. They are there for a reason. Sometimes my doctors tell me something I wasn’t prepared to hear. I am OK with that, as long as they themselves are making an honest effort to understand what I am saying, to understand what is going on in my life, and to work with me to make good decisions about what to do with my life.

Had I said the same things to Dr. One, and he told me any number of things – that he thinks I need to back off the pain killers, my use is getting too high; that it is good to go through a reset period every so often, to make sure I do not build up a tolerance; that he was finally going to refer me to that pain clinic and he would no longer fill that prescription if I did not follow through with that – I would not have been entirely happy, but I would have accepted what he said as coming from a place of respect. He has worked with me for a long time. He knows my condition. I think there has been enough time now that he has a decent idea of what sort of personality I have and how I approach my condition and its treatment. And if he would not fill that prescription until I followed through with that pain clinic, I would understand. I would insist that I at least return to my former dosage so that I could continue to work – I will not roll over. But I know that he would listen to my concerns and his answer would be well-considered.

It is quite another thing, however, coming from a doctor I had seen only once before, over a year ago, about a totally different issue, who probably couldn’t pick me out of a lineup with the costumed cast of Sesame Street, and who made absolutely no effort to do her part of the deal in the patient-doctor relationship – to step back and listen to the patient and to make an honest attempt to understand what they are trying to say. It is one thing to have a familiar, understanding figure give his honest opinion – it is another to have a total stranger give me one third of a minute to explain why I was even there before she begins to treat me abusively.

I felt that Dr. Two’s treatment was inappropriate, and even the twenty seconds she gave me were given in bad faith: she appeared to take no time after seeing Vicodin on my chart before deciding I was an abuser and she was going to be the one to give me the tough love.

Dr. Two, tough love cannot come from someone who cannot bother with the latter half of the phrase.

I want to thank the staff for the wonderful service I have received during my time here. Honestly, I find it hard to return to the clinic at this point, but I don’t feel like going through the gamble again. In the meantime, I want my doctor to understand what went on during my two-minute visit on Friday, and there’s no way I could piece it together speaking. Thank you for listening.

Amanda