Oh yeah? Well you can’t tell me that I *am* depressed.


My hands are swollen today. My skin burns. My knuckles ache.

If I use the computer mouse for too long, my hand curls into that shape, and I have to force my fingers and palm to straighten out. At the same time all off my muscles—in addition to the ones in my hands—are weak. I mean can’t-stand-up kind of weak. And can’t-raise-my-arm-to-scratch-my-nose kind of weak.

It might be the Gabapentin, or it might just be me racking up more symptoms that science and medicine fail to explain. At this point, I don’t know what’s what. And once again I find myself wondering if this is really fibromyalgia.

At the end of last week, I had accepted as much. But with so little solid information out there about fibromyalgia, it’s hard to remain 100% committed to the diagnosis. My feelings on it change with the barometric pressure.


I had planned yesterday to do a couple of laps around the backyard. But it didn’t happen. I was so exhausted after a basic shower that I couldn’t even trim my nails or keep my eyes focused on the TV until the end of the vice presidential debate.

So why the hell couldn’t I sleep when I finally gave in and went to bed? Because instead of sleeping, I had imaginary conversations with a few of my doctors.

Now, I’ll be the first to say that a lot of Spoonies would kill to have an encounter with their doctor (actually, she was a physician’s assistant) like I described last week. One where the provider reminds you that you aren’t to blame for your condition. But it was a long visit, and it wasn’t all rainbows and sunshine. One part of it in particular really made me bristle.


“You can’t tell me you’re not depressed,” she said. “Anxiety, depression. These things go hand-in-hand with fibromyalgia.”

Well, since she admitted I couldn’t tell her I wasn’t depressed, I didn’t try. I would have shrugged in her general direction but the intense pain in my neck, shoulders, and back wouldn’t allow it. So I just sat quietly, stifling the urge to shout at her. (As an aside, did you know that some doctors have signs in their exam rooms warning you that they and their staff will not tolerate swearing or disrespectful treatment? The fucking irony, guys.)


Have you ever heard of the term non-compliant as it relates to a patient? Unless you’re a chronic patient, I’m guessing not. It’s what doctors label patients who don’t follow orders. I would guess that practically every patient would qualify as “non-compliant” at some point.

Ever eat high-cholesterol foods when your doctor says don’t? Ever fail to finish the last couple of antibiotic pills in your prescription? Ever watch TV instead of getting up and moving around? Ever just cancel that follow-up appointment because you felt better and didn’t want to waste anyone’s time or shell out for another co-pay?

Congratulations! You are a non-compliant (or difficult) patient!

A decade ago as a young, mostly healthy patient, there weren’t really any consequences for my non-compliance. If I didn’t finish my dose pack for a sinus infection, the doctor would never know. I probably wouldn’t see her again for months or even years.

As a chronic patient, if I feel a medication is doing more harm than good (and presumably only I can possibly know this, right?) and I opt to stop taking it, chances are very high that I will be labeled non-compliant by the prescribing doctor. That label puts a very real strain on the doctor-patient relationship for reasons that I will assume are obvious.

As a professional patient, I’ve encountered a fair number of doctors in the last couple of years. Almost every one has regarded me as being some level of non-compliant. I don’t know that any of them would dare to write this on a patient’s chart, but it’s apparent in their body language, tone of voice, and willingness to listen.

(I just want to explain this whole non-compliance thing to help others understand why chronic patients might complain about medicines but keep taking them or complain about their doctors but keep returning to them. Starting over with a new doctor is often harder than putting up with a stubborn one.)

Anyway, back to the whole depression thing.


I cry. A lot. But I don’t consider myself depressed. I cry because of pain. I cry because of the embarrassment of living with IBS. I cry because I can’t drive, and I have to ask Dan to do all sorts of ridiculous things for me. I cry because my life has changed in ways I really, really don’t like.

But I don’t cry because the sky is blue or because someone left the milk out on the counter overnight.

I feel like my sadness isn’t a sign of an imbalance in my brain’s chemistry but a sign that it’s still working really well. Being chronically ill sucks all kinds of ass. I’m not suppressing “weak” emotions, and I’m not emotionally numb.

If I lost someone close to me, I’d cry right? People would look at me sideways if I didn’t cry. Well, I have lost someone close to me. ME!

But I can still laugh, crack jokes, appreciate a good homemade lasagna. And I still sing every time Simon & Garfunkel’s “Feelin’ Groovy” starts up on Google Play.

So I resisted the urge to raise my voice last Thursday and say, “If being sad about sad things makes you sure I’m depressed regardless of my input, you also have issues.”

But I didn’t, because I don’t have the energy to fight with my health care providers, and I don’t have the energy to find a new one.


The Psychological Stages of Chronic Illness

I have talked a little bit about denial and grieving as it relates to my fibromyalgia diagnosis. This isn’t something I came up with on my own. It’s a thing that I first read about online.

Some people buy it; some people don’t. It makes sense to me, especially considering that the stages Jennifer Martin describes are not linear. Some people jump back and forth between the stages frequently.

*Raises Hand*

I made a little drawing of me with my trusty new walking cane to visually represent what the chronic illness grieving process looks like for me.

I’m climbing a mountain that was formed by all of the stages—some in larger quantities than others.


My Medically Induced Vacation: Day 1

I’m off work for the next two weeks while I try to navigate my new disabled life and continue evaluating the effectiveness of the Gabapentin my doctor prescribed.

It’s not really a vacation at all, and it sucks that this is how I’m blowing my PTO. But a great deal more of this life is out of my control than I ever imagined would be when I was a young(er) adult. I’m learning to accept that, but not without a nice, ridiculous internal struggle first.


My itinerary for today included three things:

  1. Call the vet to secure Boomer’s boarding reservation for later in the month.
  2. Buy a mobility aid.
  3. Rest.

Check, check, and check.

And, yes, I do have to trick myself into resting by pretending someone’s life depends on it. Huh. I guess that life would be mine, come to think of it.


We got my cane at Walmart. God bless them, the thing was right inside the door, and I got to test it out while we walked around, smelled the pumpkin spice candles, and gasped at the ungodly price of area rugs.

$11.87. That’s what this institutional black walking cane cost me. They had some more decorative stuff available, but nothing I saw (even online) suited me. I promised myself I’d pimp my ride with stickers and streamers and other accessories in the future. What mattered most was achieving upright stability.

Much as I love Dan, I hate hanging on his arm all the time. As an accessory, he just doesn’t coordinate with my independent streak.

After we paid, Dan handed the cane back to me. “Ready to go, Grandma?” he asked.

“I’m going to need you to take a ‘Get off my lawn’ pic of me waving my cane in the air when we get home,” I laughed.

“Consider it done.”


I am very slowly coming to terms with how I look, but it is not easy. If I had aged at a normal pace and gained weight gradually, it might not be so shocking to see pictures of myself or catch a glimpse in a mirror. But I currently look at myself and think, Who the hell is thatDoesn’t seem to matter that I’ve looked this way for two years now.

I am in the grieving stage of chronic illness. It’s harder than denial, which is probably why I hung out there so long.


Fibromyalgia · Medical Cannabis

The First Time I Got High

medical-cannabis-gummiesSo far, I’ve received three questions about medical cannabis via my contact form. All three were variations on the same theme: Does medical marijuana make you high? I’m answering this from a personal perspective, just to be clear. What follows is NOT an answer to Does medical marijuana make one high? or Will medical marijuana make me high?

TL;DR answer: Sometimes.

The first three times I took medical cannabis, I used THC-infused Indica gummies. Each time I took one half of a gummy with food before bed, and I did not get high. The fourth time I took half a gummy on an empty stomach while ill (and probably pretty dehydrated) and I got high as fuck.


A short time ago, Dan and I traveled to Indiana for a funeral. I was sad, anxious about traveling with chronic pain and IBS, and (as usual) ignoring my body’s attempts to warn me to be kind to myself.

We were on the road at dinner time, which meant stopping for a bite along the way. I had a baked potato and a vanilla Frosty from Wendy’s. Maybe not the healthiest meal, nutritionally speaking. But at the time all I was hoping for was “not spicy” and “hopefully not tainted.”

A baked potato and vanilla shake seemed like my best options on a strip of road where burgers, onion rings, tacos, roast beef, chili, fried chicken, and 12-hour-old wilted salads were my other options.

We met up with family at the funeral home. I hugged my parents and extended family and took a seat at the back of the room, as close to the restroom as possible while still being present for the service.

Aside from my usual aches and pains and moderate vertigo when standing up, I made it through the service without incident. I hobbled down a few stairs to the parking lot, and we left for home.

The cramping didn’t start until we had been on the road home for about an hour. “Dan, you are officially being warned. Take the next exit where I can access a public restroom.” I clutched my gut and loosened my seat belt.

I prayed to no one in particular that I would make it. “Also, pull the car right up to the fucking door please.”

Dan obliged. I made it. As far as anyone else knew, I was just a regular traveler taking a break to answer the gentle (ha!) calls of nature.

(Funny story: when my IBS was at its absolute worst, I’d run to the bathroom at home, slam the door shut, and sing “Looks like we made it…” at the top of my lungs. A signal to Dan that things were going to be OK—not good, but OK—and a reminder to myself to laugh.)

We were back on the interstate. Home was less than an hour away. I sighed, relieved.


Three blocks from our house, I cried out in pain. The cramps were back. I took rhythmic breaths through clenched teeth. “I need to get home. Now.”

Dan gave the car a little more gas. We were doing 45 mph on a 25 mph street, coming up on a red light.

Turn green. Turn green. Turn green. FUCKING TURN GREEN ALREADY.

“Dammit!” I yelled as Dan brought the car to a halt at the intersection. He was doing the best he could.

Hee hee. Hoo Hoo. Hee hee. Hoo hoo.

We were moving again, but there was a four-way stop a few hundred feet in front of us. Cars were queued, waiting for their turn. There was no way Dan could just roll through this one.

“I’m not going to make it,” I said.

We were literally a block from home, and I started crying.


I showered and cleaned up on my own. The only pair of dress pants I owned went in a garbage bag. I put on my pajamas and crawled into bed. Everything hurt, I was deeply embarrassed, and I was emotionally spent. I reached for the medical marijuana, knowing it would dull the sharp edges of my pain, calm my gut, and help me sleep—just like the first three times I had taken it.


Thirty minutes later I reached for the glass of water on the table beside me. “Why is my arm doing that?” I giggled.

“Doing what?” Dan asked.

“Look. I have a Go-Go-Gadget arm. It’s reaching too far and I can’t pick up the glass.”

“Oh my god. You are so stoned right now.”


“That is so cool,” I said. “When I close my eyes the things I think in my brain are cartoons!”


“What’s so funny now?” Dan asked.

“There are strings around my lips and in my cheeks. Someone is pulling them! I can’t make my face unsmile! Turn on Bob Ross!”


“Dan? I’m having really intense deja vu. Also, how many Modern Family episodes are they showing tonight? Jesus.”

“This is still the first one.”


“I know why hippies are hippies. If we give mean people weed, they can love everyone too. Like I do.”


“Take a look! It’s in a book! A reading rainboooooooww!”




“Why can’t everyone who’s sick have weed? I want everyone to have weed. I love weed.”

“Maybe one day.”


“Yeah, Love?”

“Nothing hurts.”

NOTE: I have chosen not to take medical cannabis while I try to evaluate the effectiveness of the gabapentin the doctor just put me on. I still have a few posts in the queue, however.


Drug Check: Gabapentin

I’ve been on 100 mg daily for three days. So far I am not impressed, but if I could give Cymbalta six months, I can give this a few weeks. I will continue taking it.

This post might be a bit boring; it’s mostly just to help me remember what I’m experiencing (and possibly help someone else who goes on it for the first time).

  • The extreme burning sensations I was experiencing in my feet and legs have gone from about a 10 to about a 2 overall. Intensity is still occasionally higher.
  • I feel slightly less pain when I don’t move, but if anything touches me the pain is actually more intense than before I started taking it. (For example, was playing with Boomer and his happy tail hit my face. It felt like I’d been smacked really hard. The intensity of the pain kind of stunned me and lingered way longer than it should have.)
  • I get weird sensations all the time anyway, but in the past three days I seem to be cycling through those sensations faster. They include: pain, burning, tinging, pins and needles (like right now, my left leg feels like it’s asleep).
  • The dizziness is out of control. I can’t walk around much, and sometimes feel like the room is spinning even when I’m sitting still. It is worse in the morning and gets better as the day goes on. (I’m guessing because I take gabapentin at night before bed.)
  • I feel extremely weak. Cannot open jars or bottles. Very unsteady of my feet. Last night I was eating a bowl of ice cream while we watched Luke Cage on Netflix, and I had to keep setting the bowl down because my arm was just too tired to hold it the whole time.
  • My hands hurt and are stiff and slightly swollen. Dexterity sucks.

UPDATE 12:05 pm: Feet are burning intensely again. Hooray.


Sometimes Assholes Are Right: A Fibromyalgia Life Lesson

“You are not weak. You do not have some personal shortcoming to overcome. You are sick.”

That’s the straight talk I got at the doctor’s office yesterday. And with every admonishment, I felt like my doctor was whacking me with a really hard, really stale baguette. It hurt on a basic level, like being hit with any hard object would (especially in my condition) but there was the added humiliation of knowing that I armed her with the stupid baguette.


I was diagnosed with fibromyalgia in October 2014 by one of the worst doctors I’ve ever had the displeasure of meeting.

He was the kind of doctor you’ll hear Spoonies talk about often: arrogant, dismissive, sometimes even combative.

After dropping the fibromyalgia diagnosis on me, he handed me a pamphlet and said “Here, you can read about it and I’ll be back in a minute.” He left the exam room.

I opened the 300-word brochure and stared blankly at the glossy pages. When the doctor returned, he told me he was putting me on Cymbalta and asked me if I had any questions. Of course I didn’t have any questions; five minutes alone with a pamphlet was hardly enough time to process what I’d just been told.


After a brief tangle with my health insurance provider regarding preauthorization for Cymbalta, I went on the drug.

I could write a novel about the six months I was on Cymbalta. It was just so horrible. I’m not a huge fan of trading symptoms for side effects anyway, but this SNRI was fucking with my brain chemistry in ways I never would’ve imagined possible. I didn’t feel like myself, I was gaining weight fast, I was short of breath, I’d have mini breakdowns over nothing. Instead of feeling like my overactive nerves had been gently persuaded to calm down, I felt numb. Everywhere. The lack of sensation only made me more anxious.

slide_18When I brought these concerns up at my next appointment, my doctor didn’t seem too interested. He looked up from my chart just long enough to tell me that if I went off the drug or lowered the dose, I would suffer.

When I tried to ask more questions—because, you know, my health is kind of important to me—I got the “difficult patient” treatment. To him every question was a personal assault on his intelligence, not a quest to learn more or find a better treatment option.

It was my last appointment with him.


So back to yesterday and my current doctor calling me out for being in denial for two years: it was a really, really hard appointment for me. For significant portions of the extended visit, I couldn’t talk because I was too busy wiping my nose and eyes with a tissue.

I am disabled now. I still can’t say that out loud yet; I can only write it. I’m not in a wheelchair, if that’s what you think when you hear the word disabled. I’m disabled because I haven’t driven in over a year for fear of injuring myself or others. I have to sit on a shower chair, and sometimes can’t lift my arms above my head to wash my hair. I can’t walk very far or very fast or sometimes even at all. I can’t think straight because the pain is so distracting. I can’t think straight because I am not sleeping at night.


Plenty of things have contributed to my two-year denial. For starters, because that first doctor was an asshole and a bad listener, I also wanted him to be wrong about my diagnosis. I mean, how could someone who wanted me to be complacent and follow orders possibly know what was wrong with me? He never listened to me!

I had test after test after test to look for the “real” source of my chronic pain, each time hoping something would pop up positive and I could mumble a self-satisfied “neener-neener” to the jerkwad.

I also internalized a lot of skeptical messages about fibromyalgia, despite outwardly defending myself and other fibromyalgia patients against them.

That’s not a real diagnosis.

You wouldn’t be sick if you could handle stress better.

You just want attention and pain meds.

Doctors decided to call it fibromyalgia because “female hysteria” is no longer politically correct.

Also, I didn’t want to be sick. I just didn’t want to be in chronic pain, so I pretended I wasn’t whenever possible. And I didn’t come up with that coping mechanism on my own. For years people have been telling other people to “just ignore the bee and it’ll leave you alone” and “just ignore the kid that’s picking on you and he’ll stop.” So why not take that same approach with pain?


I started yesterday’s appointment like I always had. “I keep continuing to decline.

“My heart rate…

“The dehydration…

“What about the possibility of something seronegative…”

Eventually, my doctor started getting through to me. “You have to deal with this chronic pain. Your muscle weakness, your high blood pressure, your erratic heart rate—those things are not happening independent of your pain. They are happening because of it.”

I nodded.

“Fibromyalgia is a real thing, not a character flaw,” she pressed and waited for me to look her in the eye. “It has an ICD-9 code and everything.” She searched my face for signs that I was getting the message.

Finally, I confessed that I knew my refusal to try different medications because of my Cymbalta experience hadn’t helped me at all and was likely making my life worse. I was ready to try.

“You’ve probably read a lot on the internet. How do you feel about trying gabapentin?” she asked, handing back the baguette.


Hi. My name is Emily, and I am sick. I have fibromyalgia. That asshole doctor was right.

…but he is still an asshole.

Fibromyalgia · Medical Cannabis

Got My Illinois Medical Cannabis Card

illinois-medical-cannabis-cardIt’s here! My Illinois medical marijuana card is here!

I went to the Medical Cannabis Outreach mobile clinic on August 13, 2016 for help with my application and fingerprinting, and I received my card in the mail on September 26, 2016.

That’s 44 days from start to finish.

I am relieved that marijuana is now available to me, particularly after fighting through some very difficult days in the past couple of weeks.

The plan is to write about my experiences, which promise to be enlightening. You see, not only will I be able to write about them from a patient perspective, but also as a new user.

That’s right, folks. Aside from a couple of contact highs in college, I have absolutely no experience with recreational marijuana. That’s because when I was growing up about all you could do was smoke the stuff, and that didn’t appeal to me. (For better or worse, no one ever offered me a brownie.)

Also, I had a very real fear of Satan, demon possession, jail and criminal records. So, yeah.

Anyway, my hope is that writing about using medical marijuana to treat my fibromyalgia will accomplish two things: 1.) opening a patient-to-patient dialogue that helps me and others discover what works, and 2.) showing non-patients on the fence about medical marijuana that it’s not something to fear.

Please feel free to use the comments section of any post or my contact form to ask questions along the way.