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

Double Up

When I was diagnosed with cardiomyopathy my husband and I had a heart-to-heart with Dr. Heart about babies.

Now, I`ve never been the girl who gets gushy over babies.  They cry, they puke, they poo and they can`t make jokes.  I was convinced I would be the one to break a baby if I had to hold her.  Despite all of that, I wanted my own, but not until I was about thirty.

A few things changed since I made those plans.  My biological clock started ticking very softly when my mom-in-law was sick; we thought about starting our family so she could meet her grandbabies.  And when she was dying, we really thought about it. 

It turned out to be a good thing that we decided not to bump up our baby plans, because they didn`t find the cardiomyopathy until three months after she died.  If I got pregnant with a sick heart, I`m not sure we would have made it.

The clock got louder when I had my first snuggle with a baby.  He nuzzled into the hollow of my neck and I melted.  He was so beautiful and helpless, and he wanted me to love him.  Me.  With my past.  With my flaws.  My love was enough for this small baby.  And his love for me in that moment was so innocent and pure, with no guilt, no demands, no judgement. 

I didn`t know babies could show love until that moment.

The rapid tick-tock shocked me when Dr. Heart very gently told us that we could not get pregnant while I was taking my heart pills.  He asked what birth control we were currently using (The Pill), and told us why it was important to double-up (always use condoms or spermicidal foam as well).

The meds I needed to fix my heart were known to cause major birth defects, including under-developed skull, and could also cause foetal death.  My own heart pulled the plug on my clock.  But it was one of those old-fashioned wind-up clocks.  Daylight charged the glow-in-the-dark hands; it was the only thing I could see as I was trying to fall asleep every night.

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

Premature Ventricular Contractions

It’s common for a healthy woman in her twenties to experience some PVCs – extra, abnormal heartbeats that begin in one of the ventricles. That’s what my doctor said when I was rejected by the blood bank for having an abnormal pulse. She wasn’t making it up; it’s true.

It’s not healthy to have more than one hundred PVCs a minute.

My family doctor was smiling when she told me what the sleep study found. Don’t judge her for giving me bad news in a light-hearted way; in this case, bad news meant good news. Knowing that my heart was working so hard to pump blood through my body, she had no doubt in her mind that I was tired because of the PVCs. My other symptoms (pain in shoulders and neck, headaches, blurred vision, etc) could also be related to my heart issue.

Woo hoo, there was finally an explanation! Unfortunately, we also had to consider why my heart wasn’t pumping well. PVCs are a symptom, not a disease, and the cause ranges from easily fixed (viral infection) to deadly (Hypoplastic left heart syndrome).

Dare I say, the news gave me pause.

The tests started right away. Remember that bulky piece of equipment I had to wear? It was a Holter monitor, a device that recorded my heart beat for 48 hours. It confirmed the PVCs that I had the night of the sleep study weren’t a fluke. My heart had thousands of extra beats over the course of two days.

Then Dr. Heart (my favourite specialist so far) put me on a treadmill and found out that my heart didn’t freak out under stress. He thought that was great news, but needed to do one more test just to check something out, as doctors often say.

I’ll never forget my first echocardiogram (basically an ultrasound of the heart). Many people cry when they see a growing fetus on an ultrasound screen. I had to choke back tears when I saw the image of my heart working so hard to keep me alive. It was obvious, even to me, that my heart was sick.

I described it to my family by doing a dance. I stood tall, stretched my arms high above my head and pumped my legs up and down as fast as I could. That was my tired heart. Except my heart couldn’t fall over when it was too tired to keep going. Well, I guess it could, but I’d be dead.

There was one more test before I got the news. An ECHO is requested by doctors to look at the structure of the heart, and it can also measure an ejection fraction (how much blood pumps out of the left ventricle with each heart beat). A MUGA scan is a more accurate way to measure the ejection fraction (EF).

A normal EF is 55 to 70 per cent. Mine was 27 per cent.

Dr. Brain

The first real clue about my illness came from the sleep study, not the MRI, though it was a neurologist who told me about it.

As soon as the sleep study results were available, before I could see my family doctor, I saw Dr. Brain. When my husband and I sat down in the waiting room, I was convinced that I had Multiple Sclerosis. Turns out, I was one hundred per cent wrong.

We were lead into a small room after waiting for about twenty minutes. If you compared the layout of the room to a tennis court, the doctor’s chair was sitting on the net, and his large desk, two chairs, a sink and counter top were squished in the back court.

The neurologist tested my reflexes and tickled my feet to watch how my big toe reacted. He did some other basic physical tests that I can’t remember. Then he asked me to sit down.

Dr. Brain didn’t sit behind his desk to give me the news. He sat on a stool beside his sink and stared at my file when he told me that I absolutely did not have MS. I was stunned.

There were no lesions on my MRI. It was clean.

I started to grasp for answers, because weird things had been happening to my body for five years and I was sick of it. I asked him about my symptoms and I pointed out the similarities to MS.

He started to blow me off and I got angry. I raised my voice enough to disturb his assistants working in the next room.

I would be embarrassed about my behaviour if it hadn’t forced the doctor to look up. The tone of my voice snapped him awake. Wait, he might have thought, this is a real person.

Dr. Brain softened. When he looked up at me he showed true empathy. He, of all specialists, is used to people who have gone for years without a diagnosis and without relief. And that’s when he told me there was something odd about my sleep study results.

Focus on your heart, he said. There are too many extra beats.

Feedback

Hi guys,

Thanks for reading my blog so far. Your comments have encouraged me to keep writing. In some cases your feedback has helped me understand why I do the things I do. Check out the comments on Portable Fences

I'm about half way through my story now, and very close to revealing the real diagnosis. But before I write about it, I want to get some feedback from you.

A co-worker friend who reads my blog recently asked me when she was going to find out what the heck was wrong with me. She wants to know right now!

What about you guys? Do you want to read about the diagnosis in my next post or two? Do you have any questions about Fibromyalgia or my symptoms or my thoughts and feelings before I move forward with the story?

Let me know. Don't forget, you can leave an anonymous comment, or you can send an e-mail to mckay_jenn@hotmail.com

Talk to you soon,

Jenn

Next Time I'll Bring Alexisonfire

The MRI was booked before the sleep study. I was warned that it would be loud, time-consuming and possibly make me feel claustrophobic. I was told to bring music.

The night before the test I got ready for bed by relaxing in the bath. I usually have a hard time sleeping the night before a doctor’s appointment or a test, and a warm bath does help, even though it gives me time and space to dwell on the possibility of bad results.

That night, I spent an hour deciding what music to bring. It had to be relaxing but not boring.

As I sat in the bath, thinking about MS, I listened to Foo Fighter’s acoustic album. It was perfect – calming and a little dark at the same time. It became my MRI theme music.

When I arrived at the hospital the next morning, I was absolutely positive that my mystery would soon be solved. I was convinced that I had MS and that this test would show lesions on my brain. The thought created both anxiety and peace inside of my mind and heart. It would suck, but this stage would be over soon, I assumed.

The MRI technician was in her twenties. Well, I thought she was the technician until she told me that she was the assistant. She took my CD and then showed me into the room. It was a huge white room empty except for the daunting machine, which is basically an examination table with a large tunnel at one end.

I got to keep all of my clothes on - a nice change of pace from the many other tests I had taken up to that point. Patients have to get naked too much as far as I’m concerned.

The assistant positioned me on the bed, lined my head up to the tunnel and went back to her room, where she could watch the images and control the machine. She started my CD as she told me not to move.

When the tunnel moved over my head, the machine started to make an obnoxious banging noise that was only subtly obscured by my music. (Next time I'll bring Alexisonfire.) I stayed very still during the hour-long scan, afraid even to breathe too hard in case it blurred the pictures of my brain.

To keep myself occupied, I imagined that my thoughts and feelings could light up different parts of my brain for the picture, and I went through a range of emotions from sad to angry to happy by thinking of people, places and days that made me feel one way or the other.

The songs played one after the other, getting closer to the end of the album as I regulated my movement. After staying still for a while, my body wanted to twitch and scratch itches and stretch, but I ignored it. I took three or four shallow breaths, and then allowed myself a deeper one, but never a full lung and gut breath, just in case.

I didn’t want to give anyone any reason to doubt the results. I wanted those lesions to be clear.

The worst part of any test, for me, is once it’s complete and I face the person who knows the results, but is unable to tell me what is wrong with me. Over the course of several years, every smile I saw contained to the lips, every twitch at the corner of a mouth, every gleam in an eye became a sign that the test was either negative or positive.

This test was a big one, and I wanted to know right away if I had MS or not. I tried to read her face as she handed my CD back. Is there any pity in that smile? Is she looking at somebody who may be crippled in a few years?

I couldn’t tell.

One Lifetime

I could have died.

Would have died if I was born only eighty-one years earlier. Maybe even fifty years sooner. The technology to diagnose my problem was invented in 1924. One of the medications that saved me was released to the public in 1958.

It would have been a slow and painful death. I would have spent my last months feeling terrified and alone and depressed.

And if I had died from the sickness that had eluded doctors for so long, I would have missed my chance at coming close to death again.

Knock knock.

Who’s there?

You know who it is.

It’s weird. All the time I was sick, I never once thought about dying until I was properly diagnosed. It didn’t feel like that kind of illness. Plus, I was stuck on the MS possibility for a while.

So, I could have died. It’s something I think about before I fall asleep some nights. Sometimes, on those nights, I have nightmares - not necessarily about death, but about situations that fill me with anxiety. Fear dreams. Big fears.

The truth is, given the technology that exists today, and the level of care available, the only danger of death would have been going for a few more years without diagnosis. I was much more likely to have died shortly after I was welcomed back to Healthy Town. (I’ll get to that later.)

But if I was born eighty-one years earlier, I would have died for sure.

It sounds like a long time ago, if you don’t consider how long the earth has been around, or how long we live these days. One lifetime makes a huge difference.

Makes me wonder what my children will see in their lifetime.

Cure for all cancers? At least breast cancer. Cure for AIDS? A vaccine for HIV is in the works. Cure for MS? Possibly. Gene manipulation to avoid progressive disease completely, before symptoms can even appear? I think so.

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.

Karma Crusader

After talking with friends and thinking seriously about my anger, I think I know why I haven’t fully let it go.

True, it doesn’t affect me like it used to, meaning I don’t physically feel the anger even when I spend so much time reliving the memories that I can taste the blood in my mouth as though I was biting my cheek hard enough to stifle an urge to lash out.

But as Helen pointed out, the lack of a physiological reaction to the anger doesn’t mean I’ve let it go. Somewhere in my cells, I'm housing anger toward Dr. HC and Dr. Second Opinion because , at the very least, their negligible diagnosis made it incredibly difficult for me to get the proper diagnosis, which put my life at risk.

This week, I was listening to a radio interview with Dan Ariely, the author of Predictably Irrational: The Hidden Forces That Shape Our Decisions. Ariely talked about an experiment in which one guy overpaid for an item with two different groups of people: one control group, and one group of people that were purposely annoyed by the guy right before he overpaid. (The guy took a call in the middle of the interaction and rudely made the people wait without acknowledging it). The first group gave him back the extra money most of the time; the second group kept the money most of the time.

Ariely said that people didn’t keep the money because they were dishonest, but because they were trying to restore some kind of karma. In other words, the guy who treated them badly didn’t deserve the break they would have given him by fixing his mistake (paying too much).

What he said resonated with me. Big time.

I’ll admit it here and now: I am a karma crusader. If I see a wrong, I think it’s my job to right it – especially if I feel someone is being treated unfairly. My style is a bit different than that of the people in the experiment. I wouldn’t have kept his money, because I don’t think that’s right and I consciously make decisions on an hourly basis to stay in line with my morals; but after he hung up the phone I would have made him wait a bit longer than he made me wait.

So yes, I spend too much time trying to restore balance and justice into the most insignificant events. Why? If I don’t, I hold on to the anger of being unfairly treated.

Before I heard this interview, I had just realised that I’m worried letting go of my anger will give the two specialists who messed up a free pass, and they will never have to answer for their actions. My first thought to resolve it, then, was to find a way to file a formal complaint against them. Maybe it would stop it from happening to others.

Thanks to Ariely, I think there is another solution. In most cases, I will fold up my cape and let karma figure things out without my help.

(Because Dr. HC may misdiagnose more people, I think I have to do more, but Dr. Second Opinion was just a jerk, as far as I'm concerned, so he will fall into the 'most cases' category)

Folding the cape means giving people a break for no reason at all, and especially when they don’t seem to deserve it. If I can dole out at least one break a day, I think I can change my life. And if you do it with me, we might be able to change the world.

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.

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.

Really

Reality T.V. is a misnomer, even if we completely ignore the whole actor versus nobody argument. There isn’t much reality in those shows. The networks cut out the monotonous maintenance.

Who can blame them, really? Would you watch a show that was only about Kate driving to the zoo, or cutting up carrots, or folding the laundry?

Vince Shlomi couldn’t sell that show.

Normally I would argue that we are what we do all day every day. Today, though, I’m focusing on some surreal moments that have defined me.

During my last year of high school, I was working for the local paper to earn credits toward my diploma. An excited bird watcher called the paper to report a rare bird sighting on the lake behind his house. I can’t remember what kind of bird it was, but I remember that it was too far away for a good picture.

The guy offered to take me out in his canoe. He gave me a lifejacket, helped me climb in, and paddled toward the bird. I had been on a romantic canoe ride with my boyfriend the week before. With that serene scene in mind, it was absurd to find myself crouching in a canoe wearing office clothes, camera at my eye, listening to a stranger whisper facts about the bird.

In the end, I didn’t get the shot, but I got a taste for chasing little pleasures.

The winter before, my boyfriend and I were driving to a funeral on roads that were covered with ice and snow after a storm. He couldn’t safely drive faster than half the posted speed limit.

On a back road, far away from the last farm house, there was a car flipped over in the ditch. As we slowly drove by, I thought I saw movement in the front seat, so I asked him to stop. He reversed a few feet and parked on the snowy gravel shoulder opposite the accident.

I watched my boyfriend pry open the passenger door and pull a stunned woman out of the tangle of a seatbelt and then out of her car. And then another woman. I stepped into the cold air, gathered my long, black dress, and ran over to make sure they were okay.

They seemed okay, but shaken up. We all used our cell phones to call for help. Assured that the women would be safe, and afraid to be late, we got back in our car and headed north again for the funeral.

Watching my boyfriend extract those people from a rolled over hatchback that afternoon and then holding his hand as he accepted condolences that evening after saying goodbye to his grandmother, I understood both the tenacity of life and its frailties. I could see that even though we had little control over certain situations, we had choices in many others.

A few years later, my surreal moments started to take me down a darker path.

The new definition of me began in an ugly green office. That green wouldn’t wash off my fingers, and it grew on my skin like moss. My only response at the time had been, What?

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.

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.