An Update of Sorts

An Update of Sorts

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I had a fibro flare (or something) the week before Thanksgiving. Then on the Tuesday before Thanksgiving, I fell. I smacked the back of my head on the hardwood floor in the bedroom and landed rather spectacularly on my left elbow.

Then on the Friday after Thanksgiving I had a mild fever and was achy all over. Today, I have a sore throat, plugged ears, a runny and sneezy nose, and continued aches in addition to my usual chronic pain.

I’m grumpy, but Boomer seems to feel sorry for me and has taken to snuggling me more than usual.

***

While my parents were here for the holiday, my mom helped by shopping for and assembling our pre-lit Christmas tree. We also have fake candles in our front windows, and snowmen on top of our upright piano. It’s a cozy time to feel sick, at least. There’s more decorating that could be done, but will only happen if I’m feeling up to it. Fingers crossed.

Emily Suess, Troublemaker Extraordinaire

Emily Suess, Troublemaker Extraordinaire

I didn’t live with my parents for my senior year of high school. My dad changed jobs during some kind of personnel restructuring or something at his employer, and my parents moved to a different state. Being filled with love and mercy, my folks opted not to rip me from my hometown and instead worked it out that I would live with family friends to finish my last year of high school.

Thanks to time and brain fog, a lot of my life between 1997 and 1998 is blurry. An acquaintance or classmate might come to mind, but I will probably only recall a face and first name while straining for a last name or another important detail. Said detail will simply burrow deeper into the recesses of my mind until I’m angry and frustrated at my inability to recall stuff I thought would be accessible for my whole life (or at least another 30 years).

One thing I do remember from this era of my life, however, is a tiny bit of a conversation between my mother and her best friend, the woman who let me stay with her. Being church friends, the conversation had major religious themes. This woman said to my mother, “…and then it hit me. ‘Ye have not because ye ask not.'”

***

The fall after my graduation, I enrolled at the University of Evansville as a physical therapy major. And, much to everyone’s surprise, I dropped out of college a couple of weeks after I started. (And by “dropped out” I mean I just quit attending classes.) I was miserable and not really sure why until the Dixie Chicks’ “Wide Open Spaces” started playing pretty much everywhere. I felt that shit in my soul.

I struggled with some guilt for a while, until I realized that quitting was the first time I’d done anything for myself. I felt I’d let others down; I did not, however, feel I’d let myself down.

Too bad I wasn’t able to express that at the time, but hindsight amirite?

I was squirming on the inside, trying not to be a total flake while acknowledging that things were different now. I was different.

***

emily
Emily dressed as a school secretary.

Fast forward to 2006, another memory I recall, but this one in vivid detail.

I was 26 and working at a public elementary school in an economically depressed area of Indianapolis. The students were hungry and edgy, the parents were pissy, and one teacher in particular had a perpetual burr up her butt.

On the preceding day, one of Mrs. W’s students had missed class and didn’t get his report card. She was going to leave it in the office to be picked up, and she wondered in my direction if it should be put in a sealed envelope.

“Yeah, that’s probably best,” I replied while trying to enter a new registrant in the system, answering the phone, and fixing a small redheaded girl’s broken glasses for the sixth time that day.

After a few moments I looked up to find Mrs. W still standing in front of me. Lips pursed, left hand out, right hand on her hip. With the phone receiver wedged between my head and my shoulder, I did my best to shrug my confusion.

“The envelope.” She didn’t even bother to mouth it silently as I spoke with a parent on the other end of the line.

I glared, put the kid’s glasses down, and rolled my chair back to where the manila envelopes were lying on the counter. She could have easily taken five steps to get one her goddamned self, but she didn’t. The phone cord just barely reached. I rolled back and put the envelope in her hand, but instead of a thank you I got a smirk and an eye roll.

I screamed all the way up I-465 and across Crawfordsville Road on my way home.

“WHY DIDN’T YOU FUCKING ASK, YOU MISERABLE SLUG?”

“WHY DON’T YOU TRY ‘PLEASE’ AND ‘THANK YOU’?”

“I HOPE YOUR FIFTH GRADERS NAIL YOU WITH A POISONED BLOW DART TOMORROW!!!”

Where was I going with this story? Oh, yes. That was the day I decided I needed a college degree.

***

But not one in physical therapy. English would do nicely.

I needed money for college too, so I applied for a full-tuition scholarship at the same time I submitted my admission application to IUPUI. If I was selected for the Sam Masarachia program, I’d be required to maintain a certain GPA and participate in social organizing classes and events.

Okay, I thought, deal.

That’s when I found out I could write. The scholarship committee called me in for an interview, and a few of them (there were like 12 people grilling me!) mentioned the strength of my essay. I don’t remember much of what I wrote, except that my final line was something like, “If you don’t award me this scholarship, I will still get my degree—it’s just going to take me a lot longer.”

Well, they awarded me one of those Sam Masarachia scholarships, and over the next three years, I read Saul Alinsky. I interned at Jobs with Justice and Indiana Women Work. I marched with janitors in downtown Indy while white men in expensive coats came out of buildings and glowered at me and my comrades. We chanted “si se puede” and banged on five-gallon buckets and marched in circles with our signs.

I was fucking hooked. And I found out most shitty things stayed the same because people with power didn’t know they were problematic. (Okay, some of them knew and didn’t give a flying fig as long as no one challenged them.)

So when you mash up “ye have not, because ye ask not” and “yes, we can” you get an activist for life. And when that activist gets fibromyalgia and runs into dismissive doctors, a broken healthcare system, fibro-deniers, and ignorance…

…she says, “Fine. I know what I need to do.”


This post is part of the Health Activist Writers Month Challenge (#HAWMC). If you want to learn more about the 30-day writer’s challenge or sign up, you can do that here.

Prompt 7: Tell us how you chose to start advocating for your condition.

A Letter to Myself about the F-Word

A Letter to Myself about the F-Word

I had a big day today. I left the house this morning to record a radio interview. It wasn’t easy, but it was worth the extra effort to put on real pants and comb my hair and talk about what it’s like to be me—a Spoonie with fibromyalgia.

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A puffy-faced, make up-less (but smiling!) Emily at WILL Radio this morning.

I got home, did some stuff for work, attended my first virtual meeting of the day, and then had to embarrassingly drop out of my second work meeting to devote my full attention to being sick.

But I’m feeling slightly better now, so I wanted to see if I had it in me to bang out my post for today’s #HAWMC prompt.

Two things you should know:

  1. I dug up some angry, rage-fueled posts from a blog I deleted, and then I control-veed my way to re-publishing them here and here (under their original published-on dates.)
  2. Because they are so closely related to today’s prompt, you might want to read them too…or first…or something.

Here we go.

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Dear Emily,

The guy who’s about to diagnose you is a real prick. He’s going to drop the fibromyalgia bomb on you after a trigger point exam that leaves you reeling in pain. Then he’ll hand you a brochure printed by a drug company, and walk out of the room for a few minutes to do god-only-knows-what.

Girl, this is your red flag. Drop this doctor like a hot potato and never, ever look back.

If you don’t fire him, he’s going to write you a prescription for Cymbalta without telling you that the withdrawal symptoms will make you wish you were dead—you’ll be sick, dizzy, and riddled with anxiety for weeks after you quit taking it.

Trust me. Cymbalta’s just not going to help you, and you’ll never be sure if what happened to your body in those six months was a result of the drug’s side effects or simply it’s failure to keep your condition under control. Don’t take it. It’s expensive. It will take your nerves completely offline and everything will be numb. You will feel like the shell a brave woman used to live in.

You’ll find better doctors. They’ll be booked out for months, and you’ll wait in the exam room for a long time before they finally knock on the door and walk in. But they will try. And they will listen. And it will be worth the wait. They won’t really know how to help you, but you’ll be confident that they want you to feel better. You won’t be fighting your body and the healthcare system and your doctors.

That’s something to hold on to on the dark days.

Don’t bother to go gluten free for eight weeks. It will seem like it’s helping, and then when you flare again your heart will break from the disappointment. And in the meantime you’ll eat sad, flavorless bread that molds unnaturally fast.

Go through all the tests—the hydrogen breath tests, the blood tests, the heart stress test, the x-rays, the ECG, the endoscopy. They’re all going to come back negative. You’ll be stuck with your crappy fibromyalgia diagnosis, but you’ll know your heart’s fine, you’ll know you don’t have food sensitivities, you’ll know you’re not suffering from RA, celiac disease, or cancer. Those are not bad things to be certain of.

Try the marijuana. It’s going to dehydrate you and turn up the dizzy dial like everything else does, but you will from time to time experience moments that are painless. You’ll sing random shit that makes Dan laugh, and the sound of him laughing will make you want to sing more random shit. You’ll love the world and everyone that’s in it. And sometimes you’ll fall into blissful sleep.

I know, I know. When you see what it takes to get your medical cannabis card, you’ll freak out and stress about the money before it’s even spent. You’ll wonder if it’s worth paying so much money for the privilege of fighting the State of Illinois’ unhelpful bureaucracy. But holy shit! Your friends will donate to a Go Fund Me campaign that pays for your card application and pays for an outreach group to help you cut past the red tape. You’ll be overwhelmed by the support.

When things get rough, you’ll remember that your parents helped you get a house without stairs. You’ll remember how your husband said, “Don’t ever hesitate to ask me for help.” You’ll remember how your friends and family encouraged you every time you were bold enough to share your story.

And you’ll go to bed with the hope that tomorrow will be better, and the assurance that if it’s not there we be people there to prop you up.

Love,
Your Future Self

Patient Advocacy

Patient Advocacy

Last month marked the second anniversary of my fibromyalgia diagnosis. And even though the ICD code has been following me around for a while, I’m still having a hard time pinning down what that means for me, exactly. What does patient advocacy look like for me?

I haven’t yet developed an elevator pitch for talking about my fibromyalgia because it’s just too damn complicated to sum up. The next best thing, it seems, is to just blog about whatever I need to put “out there” whenever I’m able and inspired.

Writing about my condition and my day-to-day happenings helps me sort out my own thoughts and feelings while giving me an opportunity to honestly answer a question I get asked all the time.

How are you doing?

Though the words that come out of my mouth might say otherwise, the reality is that I am never OK. There’s always a caveat. This is where I get to talk about the caveats.

Blogging has other advantages too. It lets me vent about what’s wrong while giving my husband a break from the sometimes hourly updates about what hurts and what is and isn’t working right. (Why is no one ever as excited as we are to have a good poop?)

It serves as a sort of patient log, helping me identify patterns and theorize about the cause of my flares. And sometimes it helps me accept that there is no pattern or discernible cause, that my condition just is.

My blog connects me to a large support group of other Spoonies and fibromyalgia patients, giving us opportunities to discuss what helps. Because, let’s face it, chronic patients are perpetual targets for anyone with a pill, a book, or a scented candle to sell. We have to look out for each other.

And it’s that “looking out for each other” thing that really motivates me to write candidly about my experiences. (Yes, even about medical marijuana and IBS.) Don’t get me wrong, this blog is for me, first and foremost. But I also want it to help other patients find ways to talk with their friends, family, doctors, and coworkers about stuff that’s next to impossible to put into words.

I want these conversations to meaningfully change our healthcare system, change the way we view and accommodate disabilities, and improve the lives of every patient with chronic illness.

Because laughter is cool and all, but empowerment is the best medicine.


This post is part of the Health Activist Writers Month Challenge (#HAWMC).

Prompt 1: What drives you to write about your health? What do you want other Health Activists to know about your condition and your activism?

Plus or Minus 40 Years

Plus or Minus 40 Years

It turns out Tuesday wasn’t a flare day after all. It just seemed like it because I hadn’t yet experienced Thursday. Now here I am Friday morning after a really cruddy night’s sleep drinking my one caffeinated beverage per day*, staring down eight hours of work.

I can’t even begin to explain how or how much I hurt today.

What I can tell you is that last night it got so bad I started doing the math. I’m 36. I figure barring something tragic, I’ve got plus or minus 40 years left of this. At which point I either leave this planet or the doctors decide I’m old enough to be made “comfortable” …until I leave this planet.

Seems morbid, I know. But every time the pain creeps into 8 and 9 territory on the pain scale (I reserve 10 for that time in the ER when the doctor pressed on my upper right abdomen during a gallbladder attack and I fucking LEVITATED off the hospital bed) I can’t help but wonder if I’ve found my new normal.

If it comes without reason or explanation, why wouldn’t it stay without reason or explanation?


*A self-imposed rule, really. I allow myself a cup of coffee in the morning to try and fake being alert, but that’s it. Because #painsomnia.

Isn’t That Stigma Something?

Isn’t That Stigma Something?

For most of yesterday, I sat at my computer wondering why I hurt so bad. I figured that if I was going to have a bad day this week, it would have been Monday (my first day back to work in three weeks).

Nope. Because nothing health-related can ever make sense in my world, the flare had to visit me Tuesday. By the time the clouds had gathered, I was an 8 out of 10 on the pain scale. I saw it coming, but there was stuff to do.

By the time work was over, my body was involuntarily L-shaped. I had been so focused on work that I couldn’t unbend myself or get out of my chair at quitting time. I was sad, achy, stiff, cold, and anxiously jumping to worst-case scenarios in no time.

What if this time it gets so bad I have to stop working for good? What will happen to us?

Then I remembered the cannabis gummies sitting on my nightstand, and I took one-fourth of one.

***

I recently read that chronic pain patients don’t take pain meds correctly. Instead of staying on top of their pain and keeping it muffled and bearable, they wait until their pain is so obnoxious they can’t function to seek relief.

There are likely a few reasons for this, ranging from “I am tougher than this pain, I’ll keep pushing” to “I don’t have enough medicine to handle my pain, I’ve got to ration this shit in case things get worse” to “I’m really tired of my government, my doctor, and my pharmacist treating me like a junkie.”

***

As the cannabis made me comfy, I decided I’m going try not to label people that need relief from pain as anything other than people that need relief from pain.

Me included.

Let Me Introduce You to My Fibromyalgia

Let Me Introduce You to My Fibromyalgia

This is my fibromyalgia. There are many like it, but this one is mine.

Fibromyalgia is typically defined as “a chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas.” I have found this definition particularly useless when trying to explain my life to friends and family, so this is my attempt to compile an exhaustive list of what my life is like with fibro*.

I was diagnosed by a rheumatologist** about five months after my first complaints of muscle weakness and generalized, on-going pain. On a questionnaire, I answered questions about my sleep. On the same form, I was asked to shade in the parts on the human body that hurt.

“I see you shaded in your entire body, front and back,” the doctor said.

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And then he pressed on seemingly random areas of my body. The pain was so intense my knees buckled and I cried out in the exam room. That was the day I learned about trigger points—the day I realized I could actually hurt worse. The day someone induced my first honest-to-god fibromyalgia flare up.

What follows is a list of my symptoms. Some of them may more accurately be described as side effects from medicines I take, but I generally just lump them all in for two reasons: 1) I wouldn’t be taking the medicines if not for fibromyalgia, and 2) even my doctors can’t distinguish what’s primary and what’s secondary and what’s side effect.

  • Dizziness
  • Feeling faint
  • Elevated heart rate
  • Muscle weakness
  • Muscle cramps
  • Muscle knots (trigger points)
  • Muscles aches
  • Muscle stiffness
  • Limited range of motion (particularly in my neck and shoulders)
  • Gait problems
  • Falling
  • Widespread nerve pain
  • Joint pain
  • Swelling in hands and feet
  • Burning sensations in hands, feet, and legs
  • Itching sensations
  • Cold and numb sensations on face and nose
  • IBS-D
  • IBS-C
  • Migraines
  • Chronic headaches
  • Vitamin D deficiency
  • Malnutrition
  • Dry mouth
  • Dry eyes
  • Abnormal breathing (catching my breath with no apparent cause)
  • Hiccups after eating or bending over
  • High blood pressure that fluctuates with pain levels
  • Hypersensitivity to light, sound, smells, touch, tastes
  • Waking ranndomly to pounding heart, increased respiration (like my fight-or-flight kicked into overdrive for no other reason than it wanted to)
  • GERD
  • Fatigue
  • Weight gain
  • Nausea
  • TMJ
  • Anxiety
  • Low body temperature (usually around 97, at 99 I feel feverish)
  • Sensitivity to medications
  • Reduced (non-existent, if I’m honest) exercise tolerance
  • Brain fog (crappy short-term memory, inability to recall words, inability to multi-task without getting completely derailed)
  • Temperature sensitivity (both cold and hot)

Some of these things are constant, and some of them come and go. Obviously some have a greater impact on my disability than others.

I’m probably leaving stuff out because I can’t brain.

Some of these are mitigated by drugs (the IBS-D, for example). The only thing we have been able to stop long-term so far is the IBS-D. God, that’s depressing.

Anyway, I think Dr. Ginerva Liptan describes the mechanism of fibromyalgia pretty well in her book, The Fibro Manual.

fibromyalgia

Got questions? Ask away.


*Not everyone with a fibromyalgia diagnosis experiences the same things. In fact, though there are many similarities among patients, I’d say no two cases are exactly alike.

**As I’ve written in prior posts, my relationship with the acceptance of this diagnosis is best described as on-again, off-again. Update: it wasn’t fibro

All Good Things Must Come to an End, All Bad Things Can Just Continue as Usual

All Good Things Must Come to an End, All Bad Things Can Just Continue as Usual

Welp, on Monday I go back to work. My medically induced vacation hasn’t been as helpful as I’d hoped. But if I’m obligated to find a bright side, I guess I’m glad I didn’t have to pretend to be OK for three weeks.

The amount of pretending and ignoring it takes to get through an 8-hour day when you’re struggling to lift a fork to your mouth or open a bottle of Gatorade is hard to explain. It’s crippling, it’s depressing, and it’s scary.

***

It was my worst flare up to date that prompted me to go back to my doctor on September 29 and spend a tearful 40 minutes confronting my disability.

In that first full week off, I learned that gabapentin is not a drug that’s going to get me back on my feet. The night terrors and lost sleep I experienced on that junk instead set me back weeks, maybe months.

I quit taking it after waking from one of many nightmares to find I couldn’t move my limbs for a few moments. Immediately after I stopped taking it, I went from being scared the drug was going to permanently break my brain to worrying that my doctor was going to react negatively to my “non-compliance.”

***

Without much to keep the flare from snowballing, I spent the second week in more pain than usual. I honestly don’t remember much about it, except that when I went back to the doctor for a med check she was OK with me stopping the gabapentin and wanted to me to up my nortriptyline dosage to 20 mg at bedtime. Getting restorative sleep needed to be the priority.

***

Holy shit, have I ever slept since that appointment. Here’s the sleep I logged using FibroMapp for the first 7 days at 20 mg:

Saturday 10/14: 10 hours
Sunday 10/15: 18 hours
Monday 10/16: 9 hours
Tuesday 10/17: 11 hours
Wednesday 10/18: 10 hours
Thursday 10/20: 7 hours

The longest sleeps include daytime naps at moments when I just couldn’t keep my eyes open another second—in case you were wondering. On all 7 days, I spent my waking hours in bed, getting up only to go to the bathroom or take a shower or grab a Gatorade from the kitchen.

Dan cooked all my meals, washed and folded all the laundry, took care of the pets, shopped, rescued me from the bathtub, vacuumed, washed all the dishes, ran errands, picked up my prescriptions, met with the gutter guy, and plunged the toilets when our drains backed up. He even helped me get my shirt over my head because my arms were so weak I couldn’t lift them over my head.

***

So here I am at the end of my third week off of work, a little bummed and a lot miffed that I haven’t made any progress. I used up PTO and short-term disability and have nothing at all to show for it except a new walking cane, more medical bills, and a half-used bottle of gabapentin.

Sometimes Dependent on Others Woman

Sometimes Dependent on Others Woman

My mom tells this story about me. When I was a toddler, I was terrified of thunderstorms. Inevitably, I’d end up in my parents’ bedroom seeking comfort any time the thunder and lightning came.

My memories of this time are pretty fuzzy. But I do recall being afraid of thunder and sometimes falling asleep on the floor beside their bed. I guess pulling the blankets up over my head in my own room was only so consoling.

Eventually my parents decided I had to grow up. So one night during a thunderstorm, they closed their bedroom door and let me cry it out. After wailing through the Longest Storm Ever™, I crashed. They found me asleep on the hallway floor the next morning.

Mom says after that night I never left my room or cried through a storm again.

***

I’m no psychologist, but I like to think that the night I was left to cry it out alone was the night my independent streak was fully actualized. It’s my superhero origin story, and my superpower is: I don’t fucking need you!

Whether I couldn’t or should’t expect comfort from someone else didn’t matter. What mattered was that being okay with scary shit was on me, and I wasn’t going to let myself down.

But like I said, I’m no psychologist. And it’s probably just something I tell myself when my independent streak goes from superpower to character flaw—you know, to let myself off the hook.

It’s not my fault I don’t ask for help anymore. My life experiences made me this way.

***

Only now am I beginning to overcome the independent streak I let grow unchecked for the last 30+ years. I think I let it take over because I could. I was healthy and capable and got lots of stuff done.

With fibromyalgia, though, I have had to squash the independent beast within. Like smooshing down the trash in a garbage can, I sometimes have to plant a foot on top of the heap and step on it with my full weight to make room for a different superhero: Sometimes Dependent on Others Woman.

Sleep Study, Iron Testing, So Long Gabapentin

Sleep Study, Iron Testing, So Long Gabapentin

Getting out of bed is so hard. But I did it—for the second day in a row—and finally got to sit down with my primary care physician today. I’d hoped to write something better today, but the best I can do is keep everyone apprised of the basics:

  • I told my doctor that I had stopped taking Gabapentin and explained the nightmares that were trashing my already-trashy sleep. She made a note on my chart and said, “I’d have stopped taking that too.” She assured me I wasn’t imagining things and that although it was rare, other patients had reported nightmares and night terrors too.
  • At her suggestion, I’m going to try upping the nortriptyline again to 20 mg at bedtime to see if I can get over the slump of daytime sedation it causes. The hope is that my body will adjust. Because I don’t seem to suffer worse side effects, I’m cool with giving it another go. It could help with the fibro pain.
  • Since sleep problems keep coming up, she’s referred me to a sleep doctor. I have to have an initial consult first, but it seems likely that I’ll be completing a sleep study. “You know they torture people by depriving them of sleep, right?” she said. “If nothing else, we need to get you sleeping again or your health will never improve.”
  • Related to the sleep, she ordered tests for my iron levels and a couple of other things. I honestly can’t remember what the other stuff is right now. Since I’ve been struggling with burning, tingling, and crawling sensations in my feet and legs, low iron could be playing a role. We were surprised to look through my records and see that my iron hadn’t been tested yet.

All in all, it was a good visit. Her suggestions fell in step with The Fibro Manual that I’ve been reading. That is, prioritizing sleep, checking out iron levels, ruling out or treating things like restless leg or apnea that could be keeping me from getting the sleep I need.

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