One Last Karma Crusade

Dear Dr. Hope Crusher,

CC: Medical Disciplinary Board

Your misdiagnosis really messed me up. I want you to read this so you don’t do the same thing to someone else.

I was referred to you because I had pain in both of my arms for no obvious reason. My family doctor thought I had arthritis, but you glanced at my file as you walked down the hall toward the examination room and decided that I had Fibromyalgia.

It had been just three months since the pain began. There was no pain in the lower half of my body at that time. You jabbed your fingers into my muscles hard enough to hurt me everywhere, not only on the tender spots, but you ignored the fact it was you who was hurting me, not my illness.

You handed me a few photocopied notes and diagrams about stretching and guided me out the door.

There was never any follow up. You didn’t recommend more tests – not even a sleep study – or more doctors. You only saw me once. My family doctor had to prescribe me pills and check in with me and help me manage my day-to-day pain and fatigue.

Because you had incorrectly labelled me with Fibromyalgia, other doctors either thought I was a hypochondriac or a lost cause, and I went for years without finding out what was really wrong with me.

After years of no sleep, even while taking the sleeping pills recommended for patients with Fibromyalgia, I got fed up and demanded a sleep study. Luck for me, I had the energy that day to advocate for health.

The sleep study uncovered a major issue with my heart. I know you’re not a cardiologist, but you’re probably smart enough to realise that cardiomyopathy causes fatigue.

Turns out all I needed were beta blockers and ACE inhibitors to make me feel better. I’m not exhausted or achey or stiff anymore, Dr. H.C. I have been living well without medication for a very long time now, Dr. H.C.

If you had taken the time to diagnose me properly, instead of trying to stuff me into a neat box and then throw me out the door, you would have saved me a lot of heartache.

If you practice medicine every day the way you practiced medicine with me that day, you are a disgrace. You should put your medical licence in that box, set it on fire and then go back to school to become a Wall Street broker.

I’d rather you fuck with my money than my life.

With all my heart,

Jenn

Perfection

I’m going to jump right from sorrow to babies.

After a year of heart medication my ejection fraction went from 27 to normal, and I was less tired and less breathless.

Dr. Heart took me off the pills to see if my heart would pump well without assistance. I had to wait for six months before getting another MUGA scan to measure my heart function. Near the end of it I was getting insanely impatient.

The glaring green hands on my biological clock were killing me, but I had to wait for the green light.

Nurse Heart makes fun of me now for being so impatient. I thought Dr. Heart was slow-playing me, so I called to bump my test up a month. My plea worked.

All the anxiety in the world didn’t change the results of my test. (There goes the straightforward mind-body connection theory.) My heart passed and we threw the condoms in the garbage. I wish I had cut them up into little pieces and then burned them in a cathartic bonfire, or at least mailed them to a country with limited access to birth control; it would have made a great story.

We were lucky: we got right to it and got pregnant within three months of trying. I felt amazing. The shift from cautious to all-out-cardio quickly killed my breakable -complex.

And then I was back to fragile with a teeny tiny embryo in my belly. I was happy and comfortable; I couldn’t ask for anything more. My life was perfect. I didn’t feel completely healthy when I stopped taking the heart medication, but as soon as that embryo burrowed into my uterus lining, I started feeling better and better.

But it was a long journey. I was still classified as sick, because I was diagnosed with Fibro, and I still sometimes think this is the story of somebody with life-long health issues.

It got worse – scary worse – before I woke up in the hospital as a new person. I’ll tell you all about the bad stuff soon.

Confidence

The longer I was sick, the harder it was to imagine being well. Remembering healthy Jenn was more imagination than memory because I was so far from it, in both time and space.

As I began to resign to a life of understanding simple ideas only after a replay, I pulled away from my family and friends. Only one person believed that my brain symptoms were caused by my heart: my family doctor. Dr. Heart thought it had more to do with Fibro than anything.

So I thought that even if my heart was fixable, I would still be stupid.

I couldn’t write when I couldn’t connect one simple idea to another. The skill I had was gone; and my dream was out of reach. I was heartbroken.

At a certain point, after being lost in a story for a long time and finding no way to get my thoughts across, I realised that it was out of my control. I couldn’t write well enough to fake it with good editing. My brain just didn’t work the way it had before I was sick.

Unintentional-existential-crisis-mode kicked in. Who is a writer who can’t write? Useless.

Okay, if a wordless writer is useless, I reasoned, then I have to become someone else. My parents always told me that I could be whatever I want to be. Who did I want to be?

I didn’t want to be sick, but my world was defined by cardiomyopathy and Fibro. They were part of the new Jenn. I wasn’t sure if I could be more. And as I was trying to figure out my new life and my new mind, I couldn’t connect with the world.

Never mind the fact that I felt like I was living under water while my friends and family were living on land; change is hard for relationships. Ambiguity is worse. When there is nothing to confide in people, it’s hard to connect.

Phoebe: Want to go to a rock concert tonight?

Jenn: I don’t know.

Phoebe: Are you interested in rock climbing?

Jenn: I don’t know.

I was so focused on making a new life for myself, I never imagined that I would wake up in the hospital one day pretty much back to normal. My mind couldn’t dream up a story with an ending like that.

You Must Have Been High

The first person outside my family to call me a hippie was my high school History teacher. He was referring to my spirit.

Some hear hippie and think pothead. Co-workers who didn’t know me well may have gotten that impression, though they never said it to my face. I was a laid-back, peace-loving girl. All that was missing was a perma-smile. They decorated my pigeonhole when I started wearing sunglasses to work and forgetting my words.

Little did they know, the sunglasses were shielding my eyes from the burning white computer screen that I stared at for eight hours a day, five days a week. My eyes were super-sensitive to the light.

I’ve always been peace-loving, but the laid-back Jenn was born from necessity. It was a combination of drugs and systematic shut down. My body couldn’t handle too much stress, so I started ignoring it. Yup, just like that. With the help of my dad and my husband.

My dad told me to asses a situation by asking if it was going to matter in five years. Wow. That helped me big time.

My husband has always been an easy-going guy. Some days it takes mountains to move him. A bit of his mindset has rubbed off. He’s also the funniest guy I know, and laughing until pee almost comes out is a great way to forget stress.

The off-label pain meds messed with my chemistry just enough to keep me on an even keel until I was diagnosed by Dr. Heart. Unfortunately, I had to switch it up a bit at that point, and I got stuck taking another, not-so-good off-label pill that altered my brain function a little too much for my liking.

When I started taking beta-blockers to fix my heart, I would have stayed calm if a rhino charged me. Oddly enough to those who don’t believe cardiomyopathy causes shoulder pain, my muscles have never been more relaxed than when I was on those meds.

I was a hippie-at-heart even as my heart was only flesh and blood, pumping with the tenacity required to keep me alive; because my brain was lead by my heart into a calm existence.

Because my cardiomyopathy diagnosis didn’t automatically rule out Fibromyalgia, I was on pain meds and heart meds at the same time. And being over-medicated didn’t help me find my words.

Sometimes in the vein of doing no harm, harm is prolonged.

With All My Heart

27 per cent, eh? No wonder I couldn’t clean the bathtub or sweep the floor without needing a nap. Suddenly my breathlessness and fatigue and weakness made sense.

Seriously, I couldn’t clean the toilet and wash the dishes in the same night, so I would do one on Sunday and the other on Monday. Working full time exhausted me. Thursday was my favourite day of the week, because by Friday I was too tired to appreciate the upcoming weekend.

I sit on my ass all day in an office.

When my doctor called me at home to tell me the diagnosis, it didn’t sound like she was smiling. She was sporting her calculated-calm voice; the one devised to dispel panic. Unfortunately for me, that tone now creates a knee-jerk anxiety response.

The Diagnosis. Dun, dun, duhhhhh!

My heart skipped a beat (wink, wink) when she told me that I had cardiomyopathy, aka heart failure. Heart failure? Wait, I’m not dead. Nothing has failed. But it was failing. That’s why I had to start the medication right away.

As far as diagnoses go, this one wasn’t the greatest. First, there’s the fact that my heart was messed up. Hearts are serious. Second, cardiomyopathy literally means: hey buddy, you’re heart isn’t working but we aren’t sure why. Could be deadly, sucker.

Long way from Fibromyalgia.

I don’t want to give any Fibro sufferers out there false hope that they, too, could have a possibly deadly heart condition. It’s just what happened to me.

After I got over the initial shock of going from Fibro to cardiomyopathy, I spent lots of time thinking of heart puns. For some sad reason, the only thing I really came up with was What? I heartly know you.

I didn’t die. Obviously. Well, I guess I could be my ghost. But I’m not. So what’s left to write about? My heart. Figuratively. I became quite depressed when Dr. Heart told me things that no woman wants to hear.

Love,

Jenn

My Doctor is a Hypochondriac

So there I was, barely held together with anger, on the verge of depression, in pain and exhausted. The pills the doctor had prescribed made me numb. Literally, the top two inches of my skin was desensitized by the drugs.

It was hard to advocate for myself in that state.

But I knew without a doubt that something undiscovered was happening in my body, and it was clear that nobody was willing to push for more tests after I was banished to Fibromyalgia Town.

I was getting worse, though. Waking up in the morning was depressing. The sleeping pills I took kept me asleep, but didn’t help me get the rest I needed to feel restored. I struggled to start each day when I felt like the previous day hadn’t ended. Some days I was too tired to get out of bed.

Those days pushed me to advocate for my health. I couldn’t accept that I would just get worse and worse and worse until who knows what. Until I became disabled permanently? Until I completely lost my mind?

No. I had to do something. So I went to my family doctor and pleaded with her. Because I was convinced at the time that I had MS, I asked her to send me for an MRI.

She told me, her voice full of conviction, that I didn’t have MS. She booked an MRI to humour me. I also asked her to send me for a sleep study. I figured something was wrong there. My doctor said the study would not confirm or dispel the Fibromyalgia diagnosis, but I didn’t care, I wanted to get some sleep.

Despite my doctor’s convincing tone, I thought the MRI would show MS. I was wrong.

However, it turned out that my demand for more tests would lead us to the right diagnosis in quite a roundabout way.

Rage, Rage

When Dr. Second Opinion locked me into the Fibromyalgia diagnosis, I was trapped. His official word was the heavy canvas blanket that started to smother me.

Even though I knew, at the very least, that it wasn’t the whole story, I didn’t have the energy to fight two specialists. Energy was a scarce, barely renewable resource back then, and hope had just been listed as an endangered species.

True, I gave up before the physical exam was over, but when I got home that night, having put some distance between myself and that scoundrel, I could clearly see how he had wronged me. As the healthy, able-minded expert in our duo, Dr. Second Opinion was obligated to get the input that he required to make an informed decision.

He stabbed his fingertips into more than twenty points on my body without much response. He needed my input to make his diagnosis, but I stopped talking after the first three or four points. He didn’t even bother to acknowledge the fact that I had stopped answering his questions.

What was wrong with these two doctors? Why was the first one an idiot who just wanted to get me out of his office? Why was the second one an asshole who was more concerned about his relationship with the first doctor than with the health of a young woman?

When I stopped answering questions and started asking them, I got angry.

My hatred for these two specialists was the green that grew on me like moss. And allowing myself to feel rage for my own situation opened the gate to feeling rage for the Leukemia that was killing my mom-in-law.

A wave of rage filled the hole I was living in, floating me for quite a while.

The anger triggered a physiological response in my body: adrenaline rushed through my blood stream and my heart pounded. This raging energy gave me new life; and the ability to face a threat standing tall. As old-fashioned as our fight-or-flight defense mechanism is, it certainly isn’t obsolete.

My new found attitude had consequences, for sure, but for a time I felt unstoppable.

Fibromyalgia? Fibro-go-fuck-yourself.

Don't be Afraid

When I was sick, angry and depressed, I felt lonely.

I wasn’t alone because I didn’t talk about it, though that didn’t help; I was alone because nobody close to me was going through the same thing.

My mother-in-law was sick in a much different way. There is no hemming and hawing about how real cancer is, or how deadly. It’s not something you fuck around with.

Fibromyalgia on the other hand...

People act funny when they know you’re sick. For the most part, they’re worried to say the wrong thing. Sometimes saying nothing is the wrong thing.

We live in a social world that’s hard to navigate under normal circumstances, and when you throw anger and depression and illness into the mix, it can seem impossible. We have our own experiences with depression and anger that colour our feelings and shape our actions. And we have either had encounters with sickness or not.

My grandma died of lung cancer a year after my mom-in-law died. As hard as it was to be back in a hospital room, it was harder to be in the waiting room. And in the future, though I’m not religious, it will be hard to be in a hospital chapel. Much harder to listen to last rites.

There was nothing easy about watching my grandma die, but my relationship with hospital rooms had already been negotiated, so there was one less thing to worry about.

Before I was sick, I suspected how lonely it would be, and now that I know, I’m less concerned with saying the wrong thing when someone I love is sick or angry or depressed.

If you’re afraid to reach out to your depressed daughter, or to your angry neighbour, don’t be. Even the tiniest gesture will give that person a moment of refuge from a world of loneliness. If you’re not sure what to say, start with ‘Hey’. If you normally say ‘Hey’ and nothing else, add a question like ‘How are you?’, and if you normally talk to them every day, but don’t discuss emotions, say something like, ‘Hey, you seem sad today.’ Later, you might add, ‘Is everything okay?’.

One day when she isn’t depressed, she may reach back.

The Second Opinion

Have you ever taken tab-top drapery, rod and all, and stood the whole contraption on its end? The material zips to the floor and it turns into a rod with nothing to hold up.

It was apparent from the beginning of my appointment with Dr. Second Opinion that he wasn’t interested in giving a second opinion at all. He thought I was wasting his time. He fully respected Dr. HC and his ability to diagnose Fibromyalgia. Another patient might second guess him one day.

I was worried when the speech he gave from behind his desk inferred that he held those beliefs, but I had not yet given up hope, because there was still the matter of an exam.

By this time I knew the pressure points off by heart. I was ready to shout out yeses and nos. I wanted to tell him that it hurt everywhere, not just at those points.

And then, as though he had asked Dr HC how to administer the test, he pressed as hard as Dr HC did. In that moment I was devastated. The power left my lungs in one relinquishing exhale, flattening my voice.

There was no reason to tell him anything because he was not listening. So he went about poking me like I was a fucking faulty doorbell and I stayed silent.

My lack of participation in the test didn’t dissuade him from announcing his confirmation of Dr. HC’s diagnosis. Because he blatantly ignored me and automatically took the other specialist’s word as if it were a message from the cosmos itself, Dr. Second Opinion went from pastor to perpetrator in less than twenty minutes.

I took a chance asking for a second opinion and I lost. Now that two specialists had diagnosed me with Fibromyalgia, nobody would dare dispute it. Not even me. In public.

This moment changed me.

The people who could help me could not hear me; and my body was speaking to me in a foreign language, one even more incomprehensible than the words that didn’t make sense anymore.

Under the thumb of Dr. Second Opinion, I became lost.

Splinter of Hope

As I waited to find out what Dr. Second Opinion would say, I spun my hopes into had-to-bes.

When it came to silly issues like disputing a Fibromyalgia diagnosis, hopes weren’t real enough for me. They were flighty, unverifiable and worthy of pity. But when it came to serious issues like my mom-in-law’s struggle to survive Leukemia, hope was not only okay, it was required.

Eventually I did find hope in my own situation, but waiting for validation during the six months after my appointment with Dr. HC, I couldn’t afford another intangible in my world of unsubstantiated claims.

So hopes became facts. I hoped that Dr. HC was wrong and I searched for proof. According to the web, he had pressed on my muscles too hard, so the test had to be incorrect.

I wished to know what was happening to my body. According to the web, the symptoms had to mean MS.

Even my mind, which was not working at full capacity, was capable of skewing the facts to create a world I could live with. Not that I thought MS would be the ultimate outcome. But it would be a solid diagnosis with real treatments.

As I waited I was getting worse. I couldn’t type all day at work without wearing arm braces. Honestly, they didn’t help much, but I figured it was better than nothing.

I had a headache all the time. All the time. I went to bed with a headache and I woke up with one, and there was no relief in between. Often the pain would graduate from the normal low grade ache to a pounding, all-encompassing mess.

Sleeping offered no real rest. I slept at least eight hours a night, but it wasn’t restoring my energy. Waking up most days was depressing. I was still tired, and it felt like my body had been struggling overnight. Some mornings I felt like I had just run a marathon.

The fact that sleep didn't restore me made going to bed pointless, but I did it. And getting up exhausted was tiring, but I did it. There was nothing else to do.

I was terrified to find out what was really wrong with my body and at the same time, I was scared to never know. In an effort to keep fear from collapsing me, I had to find hope somewhere.

Dr. Second Opinion became my pastor, even though I hadn’t met him yet. All of my faith was invested in a true diagnosis, and he was going to guide me there. Not a wish, a fact. Believe it and it is true.

In this way, hope became a thin metal rod that slid through my tab-top spine, holding me straight and facing forward.

Dirty Liar

I went for a check-up yesterday. It was nice to see my specialist smile after he read my test results.

Every trip to the hospital makes me think about my journeys; the one to a proper diagnosis and the one to Healthy Town. Since I started writing this blog, the appointments have also brought back memories of what I did to isolate myself.

Even the most anti-social guy is a social being. To be truly anti-social, you’d have to live in the woods by yourself completely off the grid and off the land.

I’m not very good at catching fish and I’ll never know a poisonous mushroom from a good one, but I wanted to learn when Dr. HC diagnosed me with that shit condition. Instead of watching reruns of Survivorman, I stayed in the city with Tim and the doctors.

Living with neighbours, co-workers and family can be tricky when there’s a part of you that you’re unwilling to share. Luckily, there are a few ways to tell a non-truth.

Misdirection: You weren’t here yesterday, says a co-worker. Are you okay? Ah, I wasn’t feeling well, I reply, but I’m great now. Hey, how did the big meeting go? Was Frank super pissed about your numbers?

Side step: Do you have Fibromyalgia? Well, Boss, there’s a lot going on right now.

Denial: I’m fine, don’t worry.

The truth is, in order to segregate my illness from certain parts of my life, I had to lie. I remember one test that required me to wear a pretty bulky piece of electronic equipment for 48 hours during the work week. My first thought was about hiding it from my co-workers.

And I did hide it. If anyone noticed, they didn’t say. There are enough people there who would say something, regardless of my attempts to stay distant.

Lying takes tremendous energy, which was something I didn’t have to spare. I had to map out escape routes beforehand, because I wasn’t good at thinking in the moment. I had to pin down distractions.

At first, my heart would pound with every spoken lie, and then it became routine. Easily ignored. Just like the middle-aged panhandler, who made me sad at first. His sign said he needed money because he was travelling. Three days later, that same man was there with the same sign. After two weeks, I was annoyed, and a month later I didn’t care. The sign might have been more effective if he travelled to another intersection.

In my life, I at least had the decency to change my sign according to circumstance. But it didn’t really matter, because with every act of misdirection, the adrenaline slowed and I became a liar.

Dr. Firefox

More symptoms started to pile up after my visit with Dr. HC. Hearing the news that I viciously disagreed with the diagnosis, my body rebelled.

I’m not going to bore you with details, because they are boring. Honestly it wouldn’t be interesting if I shared the long list of problems that haunted me back then. Let’s leave it at this for now: I struggled most with what I called the brain symptoms.

I asked my husband if he wanted dinner for tacos. I started to develop habits that could be mistaken as OCD tendencies when I misplaced my short-term memory. Did I turn off the stove? Check. Are the burners off? Yup. Did I remember to check the stove? Okay, but did I lock the door? Things got worse week after week, but it started with annoying stuff like that.

Stuff that would madden the most patient person. Patience is not exactly my enemy, but we don’t get along. Six months before my appointment with Dr. Second Opinion I was getting restless, because I knew that I had to be undiagnosed before I would have a shot at getting a proper diagnosis. I didn’t want to show up without an alternative theory. I was taught to bring up a problem right before presenting a solution. Hey, it usually makes sense.

I tried to diagnose myself with a little help from Dr. Firefox. Those damned articles that I mentioned in my post ‘Duh.’ were filled with the self-esteem boosting message that I know my body better than anyone. Yes, I do, but that’s not the whole story. I may know what I’ve been through and what vodka does to my sanity and what type of weather triggers migraines, but I don’t know anatomy worth a shit.

Going online for a diagnosis was a big mistake. My family doctor discouraged me from this. If she explained why, I wasn’t listening, but I know why it didn’t work for me.

We think the Internet is omniscient. If it’s not available on a browser, it doesn’t exist. When I was searching for answers, I forgot about the dusty texts in the back rooms and basements of libraries around the world. I forgot about books, period. I ignored the fact that certain medical journals are not available to everyone online. The ideas that I formed about my body were based on partial information.

After researching for hours on legit sites, I thought I had MS. It was my reaction to heat that convinced me. When I would take a shower with my husband, he shivered as I felt rubbery and tired. The showers were never hot enough to fog the mirror. Even a slight rise in temperature made me feel exhausted, and I was especially sensitive to humidity.

Heat makes pain worse for some Fibromyalgia sufferers, not fatigue. When I typed my most prevalent symptoms into the trusty search engine, the only disease that came up as a match was MS. I didn’t complicate things by noticing that many online medical queries ended with MS. In the end, though, the best proof that Internet diagnosis doesn’t work is the fact that I got it wrong. I wasn’t even close.

It was dangerous for me to draw a conclusion about my health based on an incomplete catalogue of knowledge. The fear that I had MS fucked with my head for a very long time. Then again, so did Dr. HC’s diagnosis.

Reason # 1,843

People who know me, as a close friend or an acquaintance, know that I don’t talk about my health. Not many know why.

I’ve been a private person most of my life. In the beginning, I was emulating the behaviour of role models without knowing why privacy was coveted, or what parts of my life should remain confidential. At some point, I found my own reasons, especially when it came to my health.

Right after Dr. HC’s diagnosis, and months before anger settled into my chest, quickening the pace of my pulse, leaving me almost breathless far too often, I stumbled through my days without a clear purpose. The future was suddenly frightening. Every new or worsening symptom, like blurred vision or more dizzy spells, was a sign that my body was failing.

In those stunned days before I decided that I didn’t have Fibromyalgia, I told three people at work about it. One person was shocked that I confided in him, another was extremely sympathetic and told me about her sister who had the same thing, and another suggested time off work.

There was no way in hell I was taking time off work. Taking time off meant that I really was sick and I couldn’t face that possibility. No, the only solution was to shut up. I didn’t tell anyone else, and I sewed a glossy, magazine cut-out smile over my tired, pinched lips. I’m great! How are you?

Six months before meeting Dr. HC, my mother-in-law, who was like a mother to me, was diagnosed with Leukemia. Supporting her as she fought for her life gave me a certain perspective about illness. She never made me feel like my pain was less important than her cancer, but that’s because she was a great woman, not because it was true. Despite her encouragement, I was ashamed to talk about it. My symptoms were an inconvenience, nothing more.

This thing I was suffering from, whatever it was, wasn’t going to kill me. Complaining about my pain at work wasn’t going to make friends, and it wasn’t going to get me promoted. In fact, my sickness would probably hold me back. Keeping it to myself made me feel safe during a time when there wasn’t much to feel safe about.

There were a bunch of things that I assumed would happen if I told people. Here’s what I didn’t want: to be treated differently, to wallow in self-pity, to explain that I was sick with something I didn’t fully believe in, to be labelled as a sickie, to worry my friends and family, to hear about off-the-wall natural cures, to think of ways to bring it up seamlessly in conversation, to draw attention to my on-again-off-again relationship with intelligence.

Tucked near the bottom of my list of reasons to stay quiet was a reason that might have been at the heart of many others. Who cares?

My Fibromyalgia

Doctors hate to say, I don’t know.

Imagine for a moment that you’re a doctor. From 9 to 5, every fifteen or twenty minutes, a new person sits on your exam table and tells you that she is broken.

It hurts.

My finger is green.

My memory is... what was I saying?

Your patients are suffering and they’ve come to you for a solution. That’s what you signed up for. Maybe you like helping people. Maybe you enjoy solving problems. But every question doesn’t have an answer. Whatever your motivation was to study for hours on end, year after year, to become a doctor, sending me home after failing to fix me, even though you tried your best, must suck.

So, doctors have come up with clever ways to say they don’t know without actually shrugging their shoulders. Here are some clues that your doctor has no clue what is going on: he uses words like syndrome or condition, and phrases like ‘let’s give this a try’. Fibromyalgia is a syndrome, a group of symptoms, but not an actual disease. Many doctors collaborated to come up with that one.

The oh-so-special specialist, Dr. HC, who is supposedly an expert in all matters Fibromyalgia, sent me back to my GP for treatment with some notes. It was her first time treating the condition. She has been practicing medicine for more than fifteen years, and she currently has three thousand patients. But I was her first Fibro-victim. To put that into perspective, she recently told me that she’s treated two people with Guillain-Barre syndrome, which only happens to 1 or 2 people out of 100,000.

“Let’s give this a try’, she said, referring to some heavy-duty pain killers and sleeping pills.

Woah, back up, Jenn. Why do you need drugs if this problem isn’t real? That is what you meant when you wrote, “Many doctors collaborated to come up with that one,” wasn’t it?

Well, my friends, my pain was real. And I was tired, even though my exhaustion came gradually and it was hard to notice until Dr. HC asked me about it. Make no mistake, I don’t discount anyone who is suffering or disabled because of the long list of symptoms you can read about here.

All that stuff really happens. I just think that Fibromyalgia is a get-out-of-my-office diagnosis. But I wanted the truth.

Instead, I was shrugged off. Even worse, I think I was shrugged off by someone who didn’t do their job.

When I came home from Dr. HC’s office the day of the diagnosis, still in shock, I searched the Internet for every legit piece of information I could find about Fibromyalgia. What I found infuriated me, and gave me the confidence that I needed to believe my suspicions.

The test he gave me, when he jammed his fingers into my muscles, is the big test used to diagnose the condition. I saw what tender points he was looking for and instantly knew he was wrong. Because I hurt every place he pressed, not just at those spots. Some sites describe the amount of pressure a doctor should use when giving the tender points exam: only enough to whiten his fingernail bed.

Try this: push your fingertip into the muscle on your forearm until your fingernail bed changes colour. Doesn’t take much pressure, does it? Then push the tip of your finger into the muscle until it hurts. He jabbed hard enough to make it hurt every time.

My disbelief turned to rage.

Okay, back to my GP saying, “let’s try this”.

I told her that I didn’t have Fibromyalgia. The conviction in my voice was enough to get a referral for a second opinion. But we still had to deal with my pain, because whether I was misdiagnosed or not with a condition that may or may not be officially recognized, my upper body hurt like hell.

What?

So, I promised a terrifying decent into self-loathing and despair with my first post, Face Time, and I haven’t really delivered. Well, Up for Debate was depressing. But where’s the good stuff, you’ve asked. What the bloody hell was wrong with you, anyway?

Here’s why I hate daily chores: About eighteen months after the wacky vertigo incident happened while I was cleaning myself in the shower, I killed my arm while I was pulling clothes out of an industrial-sized drier at a laundry mat.

It really hurt. I thought I had sprained my forearm, so I went to a walk-in clinic later that day. It wasn’t broken or sprained, and the doctor on duty advised me to take ibuprofen and make an appointment with my GP. By the time I saw her, I was convinced that my problem was carpal tunnel syndrome. It seemed to fit, considering the safety-net-job of mine required non-stop typing for eight hours a day, five days a week. But she immediately knew it was something else, because the pain wasn’t in the right spot for carpal tunnel. Worried that it might be arthritis, she referred me to a rheumatologist.

Fast forward about three months later, during which time, my neck and shoulders became stiffer and stiffer (a process that began before the shooting forearm pain), and the stiffness had started to creep down toward the pain in my arms (one arm had become two). The upside-down-wine-glass-shape of my upper body became one big, angry ouchie. My muscles felt like they were constantly contracting. I had never felt pain like this. Ibuprofen was a joke.

I had high hopes when I walked into this guy’s office. Let’s call him the Hope Crusher, or HC for short. Looking back on that visit, it’s clear that he made a diagnosis before he walked into the room. HC asked me about the pain, which, at the time my file was handed to him, was only in my neck, shoulders and left arm. He asked me other questions, too, about my level of fatigue and stuff like that.

For the physical part of the examination, HC made me walk in a straight line, backwards and forwards, and touch my toes. He tested my reflexes. And then he started to dig his fingers into several different places on my body – my neck, my shoulders, my hips, my ankles, etc – asking me if it hurt when he did it. It felt like HC, a strong, capable man in his late-forties, was jamming his fingers into my muscles as hard as he could. So, yes, it freaking hurt. Everywhere.

When that was over, we sat at his desk, where he leaned back in his chair, clasped his hands together, and told me that I had Fibromyalgia.

What?

Fibromyalgia. Chronic, wide-spread pain... diagnosis criteria includes at least three months with no relief, certain pressure points and fatigue... can come and go, but usually gets worse over the years.

I was completely blindsided. I went to HC because I thought I had arthritis, and I left with a dreary prognosis. He also said that the disease had no cure and the limited treatments available didn’t always work. And then he gave me a prescription. No follow-up appointment required.