Chapter 23

This Isn’t Working

For a whole year, I waited for the all-over pain and muscle weakness to clear up, but they gnawed at me relentlessly until I just couldn’t take it anymore. My disinclination to complain went out the window when the Universe started dangling my quality of life over the shitter by a half-chewed strand of Twizzler Pull ‘n Peel. I cut my daily three laps around the half-mile path at Hessel Park down to one, and then eventually even that short distance had to be broken into parts by resting at every available park bench along the path. “I don’t know what’s wrong with me,” I told Dan. “But I can’t do it. I am so out of shape.”

If walking was a chore, climbing the stairs was nearly impossible. At work, I only used the elevator. At home I gripped the handrail with both hands like it was a tug-of-war rope and pulled myself up to our second-floor apartment. I had to fold over at the waist to blow dry my hair in the morning before work. My arms and shoulders were too weak to hold the hairdryer over my head.

“Fibromyalgia,” the nurse practitioner said. “I’m going to order a few blood tests and refer you to Dr. Lassiter, a rheumatologist.” She told me that she’d recently had to refer another young woman for the same thing. “The rheumatologist put her on Cymbalta. She said it’s helping some.” The nurse typed a few things into her computer and then added, “The doctor is a little…old school,” she added. “Don’t be afraid to assert yourself.”

“Yeah, I know the type,” I said grabbing my chart and taking it to the check out desk to schedule my first appointment with Dr. Lassiter.

I didn’t know the type, as it turned out. I would end up firing Dr. Lassiter after a particularly infuriating fourth visit. But I did spend several months under his care before any of that drama unfolded. The nurse practitioner who had referred me had already noted that she suspected fibromyalgia, so Lassiter wasn’t exactly coming at my problem from a perspective of curiosity or a desire to root out the truth. (God damnit, House totally ruined me as a patient.) Lassiter asked me a few uninterested questions about where I hurt (hint: everywhere) and he did a quick physical examination which involved poking his bony-ass fingers into various places on my body: neck, shoulders, lower back, hips, and near major joints like my elbows and knees. Places I later learned were considered trigger points for fibromyalgia patients. When he did this in the spots near my shoulders, neck, elbows, knees, and hips, I practically crumpled from the intensity of the pain. Pulling away and shrieking, I asked for a second to recover.

“I have to test,” he said. There was no sympathy in his voice. Just an annoyed defensiveness. My back was to him, but I’m fairly certain I heard him rolling his eyes at me.

When he finished jabbing me, he told me I had fibromyalgia. It didn’t shock me, of course, I had been expecting it. I would have to live with the diagnosis for a while before I eventually came to resent it. He handed me a glossy pamphlet titled “Living with Fibromyalgia.” There was a middle aged woman on the front cover. She wore yoga pants and a form-fitting, long sleeved top. Her face was twisted up in a show of pain as she grabbed her trapezius between her neck and her left shoulder.

“You can read that,” Dr. Lassiter said pointing at the brochure in my hands before walking out of the exam room without explanation. Was he leaving me alone with my thoughts? Taking a piss? Visiting with another patient? Asking his receptionist to order him lunch?

About five minutes later her returned, taking a seat in his chair. “Do you feel depressed?” he asked, apropos of nothing it seemed to me. 

“Yes,” I said without hesitation. I had been in pain for several months at this point, and I wasn’t sleeping well because of it. My ability to perform everyday tasks had significantly diminished. I couldn’t hold a full coffee pot with just one hand because my arms were too week. Dan had to drive me the couple of blocks to work every morning now because at the end of the walk I was so dizzy and shaky on my legs I feared I’d fall down in front of my coworkers and they’d assume I was drunk at 7:30 in the morning. So yeah, I was feeling kind of down about my disabilities.

Lassiter used that one question to diagnose me with “depressive disorder, not elsewhere classified.” I read those words on my visit summary as I walked away from the checkout desk. It didn’t seem right. I mean, yeah, I was experiencing more down days than up days, but there were some damn good reasons for that. I wasn’t an expert on depression, but I was an expert on me. And I was pretty sure the chemicals my brain was making were appropriate given the circumstances. If I’d been happy in light of my circumstances, that might be actual cause for alarm.

But what could I do about the diagnosis? Go back in and ask someone to take it off my chart because it was wrong? That wouldn’t possibly raise any eyebrows. I shrugged it off. I was prescribed duloxetine, generic Cymbalta. If the doctor wanted to pretend he was fixing my depression too with his off-label prescribing, well, whatever. I had to get back to work.

My insurance company wasn’t as eager for me to start feeling better as I’d hoped. They dragged their feet for a couple of days before agreeing to cover the prescription, but as soon as I got word from Walgreen’s that it was ready, I asked Dan to drive me to pick it up. I was quite excited and hopeful. The idea that I might feel even ten percent better had already done wonders for my mood.

Going on duloxetine requires working your way up to a therapeutic dose, so my instructions were to start at 30 mg a day for two weeks before bumping up to 60 mg a day. I swallowed the 30 mg pill with a glass of water before dinner and waited the whole evening to feel something. I knew it didn’t work like analgesics and that it could be days or weeks or months before the drug had any significant effect on my wellbeing but that didn’t keep me from hoping. 

While it might have taken months for any observable benefits to manifest, it only took a few hours to observe the antidepressant’s first side-effect. I bolted upright from my sleep that night feeling sensations so foreign to me they were frightening. I felt strange. I raised my left arm to my eyes in the dark and stared at my forearm, trying to see the triangles I felt on my skin. At first I felt like the triangles were resting on my arm. Then, no, I was pretty sure my forearm was made of points. I rubbed my arm with my hand. My left arm felt like triangles. My right hand felt like a normal arm. Now I was upsetting myself. What do hallucinations feel like? Could you even hallucinate new sensations? Aren’t hallucinations things you see. Then I remembered a movie I’d seen where someone took psychotropics and saw and felt spiders crawling all over their body. I shivered and jumped out of bed before the sensation of sheets was too much.

Water. I got up to get a glass of water. I’d always been extremely sensitive to medications. If I took a half dose of antihistamines during allergy season, I’d enter a Benadryl coma for at least 48 hours, my eyelids stuck at half-mast. A single ibuprofen would cure my menstrual cramps for the entire week. Drinking lots of water always made me feel a little more like myself when the side effects of a drug turned out to be more than I could handle. I flipped on the bathroom light and watched myself drink in the full-length mirror. I couldn’t see the triangles, but I could still feel them. The unaffected parts of my brain were watching the affected parts of my brain fall apart. The affected part was currently scared of triangles. The unaffected part was scared that the affected part was currently scared of triangles. That shit was not normal.

“This is intolerable,” I said quietly to my reflection.

I couldn’t sleep, so I tiptoed out to the living room and opened my laptop, bathing my face in white-blue light. Perhaps I could distract my brain from all the strangeness. I searched Google for “duloxetine side effects” and started reading drug descriptions and scouring patient forums for more information. Cymbalta, a selective serotonin and norepinephrine reuptake inhibitor (SNRI) was commonly used for treating depression, anxiety disorder, and pain. Aside from the side effects printed on the pharmacy leaflet, patients reported a whole host of really bizarre reactions to taking it for the first time. Many patient experiences were frightening to me because I liked being in total control of what I thought and felt. I was soothed by patients saying the more disturbing effects fizzled out over time—it just took their bodies and brains a little time to adjust.

I culled just enough hope from those patient accounts to keep taking Cymbalta, and after a couple of weeks I was up to the full prescribed dose. I was sleeping so much better at night that when 9:30 pm rolled around and it was time to brush my teeth for bed, I felt high about the idea of going to bed. I had the weirdest, most lucid dreams I’d ever had in my life and thinking about them made me unreasonably happy. Like the one where I told Kobe Bryant’s wife I wouldn’t take a penny less than $15,000 for my fifteen-year-old Pontiac Grand Am. 

When it came to my pain and physical disabilities, though, I couldn’t really say the Cymbalta was helping. I still hurt all the time and I still couldn’t hold the blowdryer over my head long enough to dry my hair. Dan was still driving me to work. When Dr. Lassiter asked how things were going at my next check up I said, “I don’t know if this makes any sense. I can’t really say that I feel better, exactly. It’s more like I care less about feeling like crap.”

He bumped me up another 30 mg.

A few weeks later, after a particularly harrowing day at work, it became apparent Cymbalta was doing weird shit to my brain. I walked to the parking lot at the end of the day (I still couldn’t walk to work, but had started driving again) I recounted how the boss’s boss’s boss had demeaned the quality of my work on a conference call, assessed the pulsing pain sweeping across the back of my neck and my shoulders, nearly lost my balance in the crosswalk for no reason, and tried to ignore the worst case of heartburn I’d had in my life.

“I’m so lucky my health waited until now to tank, while I’m working at a job I love,” I said to myself. And then the unaffected part of my brain said, “Girl, that shit ain’t right.”

At home that evening, I ate an entire party sized bag of gingerbread Twix and sent Dan to the grocery store next door for Breyer’s gelato.

When Dr. Lassiter started showing his whole ass, I used my blog to help me process.

February 10, 2015

Does Cymbalta Cause Weight Gain?

…The world may never know.

I’m not quite sure what it means for me to say that today I feel depressed, considering a couple months back I was diagnosed with “depressive disorder, not elsewhere classified.” But after an appointment with my rheumatologist today, depressed seems the best way to describe my state. As a rule, I typically feel pretty goddamn normal. That is, until some asshole reduces me to angry tears.

Today’s appointment was scheduled as a two-month checkup to make sure my Cymbalta was still working and my fibromyalgia pain was bearable. The nurse weighed me and took my BP, then asked how I was feeling before the rheumatologist came in.

“Well, I’ve been better. I don’t know if you noticed, but my weight shot up 12 pounds since the last time I was here.” He clicked a few keys on the laptop and pulled up my records.

“Oh, yeah. I do see that now.”

“Well, I’ve never been terribly skinny, and I’ve been known to put on a few pounds over the years. But that’s abnormal for me. You can see it on my chart. I’m not sure if it’s a side-effect or part of the fibro or what. I wanted to ask about it.”

The nurse recommended that I bring it up with the doctor. He hadn’t heard that Cymbalta could cause weight gain and thought maybe the rheumatologist would want to check my thyroid levels again just to make sure I was within range. Sounded like a plan to me; the rheumatologist came in a few minutes later to ask me how I felt.” He was scribbling shit on my chart already.

“I’m doing mostly…”

“You’re doing good?” he interrupted. “Mood OK? Pain OK?”

“I think so, yes, I replied. But I have a few questions for you.”

“Sure,” he said. So I brought up the weight thing, and told him about my recent, uncharacteristic gain.

“Oh well, I’ve heard two or three pounds maybe, but never 10 or 12 on Cymbalta. You need to exercise more.”

“I’ve been exercising more and I bought a pedal desk for working on the comp–“

“That’s good.” He scribbled something else. “Stop eating food with calories.”

“…”

I had no response for that. Stop eating food with calories? Really? Immediately I saw the old women from that hilarious Esurance commercial flash through my mind. “That’s not how this works,” the one says. “That’s not how any of this works.” Maybe it was just that he was a non-native English speaker. I wasn’t expressing myself well.

I attempted to explain. “You see, it’s not normal for me. That ‘full’ signal I used to get after a meal? That doesn’t happen anymore. And I’m constantly hungry to the point that my brain is distracting me with–“

“Exercise more. I mean, I could put you back down to 30mg of Cymbalta, but then you would be in a lot of pain.” Whether he meant it to be or not, his tone was threatening.

“But what about my thyroid? Are you saying there’s no way any of this could possibly be caused by a dosage that needs tweaking for my–“

“No. Absolutely not. Exercise more and start eating things without calories when you get a craving. You might need to enroll in a weight loss program and see a dietitian for counseling.”

At this point I was fighting back tears. It takes me some time to flip on my Thick Skin Switch, and I wasn’t expecting to need thick skin at my motherfucking rheumatologist’s office. So I was emotionally a little off-kilter.

“Stop eating so much,” he said one last time. But at this point my back was to him. I was getting my purse and putting on my coat while mouthing the most obscene words I could conjure. Once my coat was buttoned, I grabbed the yellow paper from his hands. “See you in three months,” he said.

The fuck you will, I thought. I left without even the chance to ask him about the pain in my big toes or the odd, tender bump high on my sternum between my boobs–and whether he thought it might simply be costochondritis (which seems to be prevalent among those diagnosed with fibro) or whether it might need to be investigated further.

I couldn’t get to my car fast enough. When I slammed the door and started the engine, I started sobbing.

A few days ago I got a letter in the mail that my primary care doctor, who works in the same clinic as my rheumatologist, was moving her practice. I was going to be looking for a new primary care physician anyway. This seems like the perfect time to switch health systems. Second opinions all the way around. I don’t expect doctors to be all-knowing gods, but they damn sure better let me finish a sentence.

I can’t believe I paid a $50 co-pay—UPFRONT!—for a lousy three minutes of interruption and judgment.

***

In an open letter on my blog, I addressed the board of directors at Christie Clinic. I didn’t name Dr. Lassiter in my scathing assessment of my last encounter with him, but I did disclose the date, time, and location of the visit so that, should the members of the board care enough, someone with access to my patient records could look up my appointment history and deduce the offending doctor’s identity. Once I published the blog post. I tweeted it out to my 3,500 followers and tagged three local news affiliates. The clinic noticed.

February 19, 2015

Christie Clinic Responds to My Open Letter

For those of you following along at home–god, I always wanted to write that–I have a few updates to make regarding my Open Letter to Christie Clinic.

First, one day after I published the post and tweeted it to Christie Clinic, the clinic left a comment:

Emily,

We were sorry to hear about your recent appointment. We would like the opportunity to improve the situation. At Christie Clinic, we believe in having a doctor who takes the time to listen and understand. Members from our leadership team would like to discuss your recent situation in more detail with you. At your convenience on Monday, can you please call us and speak with our patient liaison, 366-####, about your experience.

Thank you for your comments. They will be shared with our management team and we look forward to speaking with you about your recent appointment.

Seriously, I’d rather carry a stray cat’s stool sample to the vet in a perforated bag than endure the scripted pain of a customer service call.

Eventually, though, my skepticism gave way and I began to see the comment as evidence that someone at Christie Clinic noticed. That was something. I still wasn’t going to call a patient liaison though. Because, hello, I have fibromyalgia and frequent insomnia and two jobs and my meds cause dry mouth and uncontrollable coughing and yawning any time I speak.

So I didn’t call, and then a funny thing happened. On Tuesday, the clinic’s Chief Operating Officer left me a voice mail, which I returned the next morning. The most surprising part of the call wasn’t that he apologized for the problem, offered to assist me if he could, or explained to me how the clinic was addressing the problem—though he did do all those things. The most surprising part was that he read both of my posts and spoke about the problem IN CONTEXT.

When does that ever happen? I mean the reason most people loathe customer service calls (okay, the reason I loathe customers service calls) is because I have to repeat the same information twenty times, futilely trying to bring someone who couldn’t give a rat’s ass about my problems up to speed. Not this time.

So while the appointment with the doctor was the worst doctor-patient interaction I’d ever experienced, the follow-up by the clinic’s administration was one of the best complaint resolution interactions I’d ever experienced.

For those wondering about the outcome of all this, I did ask the COO to keep me informed. Of course, anything HR-related is confidential, but I suppose there’s some potential for clinic policy to be amended as a result too. Mostly I just hope this event reminds the rest of you out there not to let the health care system swallow you whole.

Complain to family and friends to get the rage out if you need to, but always ALWAYS complain to someone with the ability to do something about it.

I knew intuitively that if I didn’t get angry at Dr. Lassiter, at Christie Clinic, at the dismissive way women—especially women in pain—are treated by the entire medical establishment, I wouldn’t get better, I’d get worse. I also knew, in a way that I was unable to articulate in the moment, that there was a possibility my politeness and deference to doctors could kill me. I didn’t know it all the time, but when I was really in tune with my own body, really paying attention, I could sense that whatever ailed me was serious. I tended to squash those scary feelings by pretending my doctors were right. That it was all in my head. Or may the pain was real, but I hurt all the time because I didn’t exercise the right way or wouldn’t deny myself sugar. Maybe I brought this whole thing on myself.

The way doctors approached my symptoms was as ridiculous as a teenage boy being told he’d go blind if he touched himself, but I took it as gospel. Because they were doctors. 

During breakthrough moments where I wasn’t completely manipulated by the medical profession. I thought about Mrs. Whatsit’s advice to Meg in A Wrinkle in Time: “Stay angry, little Meg,” Mrs. Whatsit whispered. “You will need all your anger now.” I felt the truth of those words in the deepest recesses of my soul, and I fired both my primary physician and my rheumatologist, Dr. Lassiter and Dr. Oh. It wasn’t just that I was so pissed off at Dr. Lassiter that I’d decided I wouldn’t take my business to anyone working for his employer (thought that was part of it) but I also felt like Dr. Oh and I had never really clicked anyway. She was okay, but talking to her I always felt like I was struggling to make myself clear. Maybe I needed to start over. Also, I was smart enough to realize that once I’d gone public with my rant against Lassiter I’d likely ruined my chances of getting unbiased care from any doctor within that particular health system. I called the physician finder line at Carle and asked them to help me find a woman who was taking new patients. There was one. ONE. Her office was in the next town over and she didn’t have an appointment available for five months.

“I’ll take it,” I told the woman on the phone. The way I saw it I could wait five months for a woman to hear me out or I could wait a week for another man in a lab coat to condescend to me, pat me on the head, and feed me antidepressants. I mean, it wasn’t really even a choice. Come to think of it “no choice” pretty much sums up every patient experience I’d ever had since birth.

What I hadn’t anticipated was that biased treatment in medicine isn’t so much about the doctor’s gender as the patient’s. Hiring a female doctor might improve your chances a little bit, but nowhere near as much as if you could, say, grow a fucking penis and be a man instead of a woman. On top of that, finding a primary physician that’s a woman when all she can really do is farm you out to specialists who are like 75% male doesn’t really solve any problems either. You just rack up more and more traumatizing medical experiences and end up paying out the ass for it. Over two and a half years, I paid $6,213 for doctors to tell me in various ways that I was “out of shape” and “slightly overweight.” 

The fibromyalgia diagnosis I was carrying around with me wasn’t helping things either. Though what I really wanted were second and third and tenth opinions on the matter, it was like I found myself in an alternate universe episode of Seinfeld where I’m Elaine and instead of being labeled a “difficult” patient and having that note in my chart follow me around from doctor to doctor, I had the “fibromyalgia” label. My superpower was being able to identify the moment a doctor came to the word “fibromyalgia” on my medical record. The corners of his mouth would drop and his brow would furrow slightly before he asked, “So what brings you in today?”

Most assumed I wanted pills.

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