Sunday, November 29, 2009

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.

Wednesday, November 25, 2009

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?

Monday, November 23, 2009

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.

Thursday, November 19, 2009


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.


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.

Monday, November 16, 2009


I wrote about the first time that I knew my body was messed up in my last entry, Getting the Grade, but I left out something important.

When my doctor was shinning the light in my eyes, and asking me to describe what had happened, I told her that I felt stupid. She pushed her lower eyelid closer to the upper lid, narrowing her focus, looked me square in the eyes and asked what that meant. If I could go back to the young me sitting on the examination table, I would whisper this in her ear:

Your ability to comprehend simple concepts, such as the different meanings of the word grave, as heard in a conversation, has suddenly and seriously slowed.

Instead, I kept repeating the word stupid, without conveying why it was a big deal. In my mind, telling her that I felt stupid was the same as telling her that I couldn’t think on my feet, and that it seemed to be connected to the vertigo.

That day, my stupidity was consuming and unshakable, but as the hours passed, my brain sped up enough to appear normal again. There were not many bad days like that. Most of the time, my disconnect came in starts and stops. Those days have been a mash up of senior moments, as the baby boomers say. Younger folks would just say, duh.

The moments were funny at first; harmless word mix-ups that could be contributed to fatigue or brain hiccups. Or a half-hearted attempt at humour. I might say: put your foot in your mittens, or: don’t look at me with those lips. Even washing my armpits with shampoo by mistake was funny.

Later, when my thoughts began to stutter, I was worried again. Worried again. Worried again. Worried. Worried. Sometimes, instead of just thinking the same few words over and over, I would imagine writing them out by hand. It was weird, but not something that fit perfectly into the symptoms of any disease that I could find online.

Every article I read about going to the doctor and finding a diagnosis mentioned listening to my gut. The advice was so obvious that I yelled, duh, every time. I had heard what my gut said and I had shared it with my doctor, but my illness wasn’t recognizable until it surfaced a bit more. I wish one of those articles had mentioned what a long, frustrating struggle the diagnostic process can be, and how convinced you might be that you’re a crazy freak before that process is over.

Thursday, November 12, 2009

Getting the Grade

I got my first major clue to future health woes only months after I graduated from college. I was singing and dancing in the shower, feeling sorry for the guy in the next apartment who never sang out loud (oh, the weird ways I used to judge people to make myself feel good), and having a blast as I got ready for work. When it was time to belt out the chorus, I threw my head back and got really dizzy.

I stopped singing, which was probably heaven for my neighbour, and I stood there trying to steady myself. The bathroom was spinning. But it wasn’t moving in a circle, it was moving up, up, up, and then when it got to the highest point that I could see, the world moved down, down, down. Technically it would be better described as bouncing, I just couldn’t resist the cliché. As soon as my head went back, I knew that there was something seriously wrong with me, and when the room didn’t settle, it became more than a gut feeling.

I didn’t want to chance the forty-five minute commute, being off-kilter, so I called in sick and I made an appointment with my family doctor. She asked me questions and shone a bright light in my eyes. I told her that I had occasionally felt and heard a fizzing, ginger ale sound at the base of my skull, in case it was relevant, and she gave me the first well-that’s-not-good-look, and told me it was probably vertigo. I was given instructions to take it easy and to avoid long drives for a while.

When I talked to my boss later that afternoon, he asked me what I was going to do, because I had no STD or LTD. Honestly, I had to ask him what STD was. Short-term disability, he patiently explained. The temporary, low-paying job also offered no drug plan.

My world slowly stopped spinning. After the shower incident, things got back to normal pretty quickly, except I had a growing fear that my body was somehow fucked up. Proper fucked. As a safety net, I got a job with benefits, including STD. It was around this time that I tried to donate blood, and I wasn’t allowed because my pulse was unsteady. A few weeks after that, my doctor put her fingers on my wrist as she watched the second hand go around her wristwatch, and reassured me that everything was okay. There were a few missed beats, or PVCs, a completely normal occurrence in all healthy young women. Another worry quashed; no biggie after all.

Over the next eighteen months I forgot about the vertigo and the anxiety that had crept up so quickly. Happy to focus on regular things again, like starting a career, it was easy to ignore the gut feeling that I had way back then. My friends and family were also happy to move on. Who wants to focus on sickness? Even when my health issues resurfaced, the decline was mostly gradual, so I had lots of time to get used to each little problem, and so did my family. In fact, there was only one other big thing that brought me to the doctor’s office.

Things happened so slowly that I thought my body was just getting older, though I was in my early twenties. If my day-to-day health was mapped on a chart using a scale of one to ten, the line connecting the numbers would resemble a very slight slope, pretty much the opposite of a ski hill. When you looked at each day individually, there would be very little to indicate a serious illness; but looking back on the years, seeing the steady decline, it would be easy to know that something was wrong. We live day to day, not year to year. Measuring the grade is useless if you only have a day of data to go by. And comparing one day to the next can warp a sense of level ground.

The clues we get from daily life are less concrete than the ones we get after years of retrospect. My husband noticed a big difference in my attitude and my level of happiness before we knew I was sick, but he had no way of translating those changes into a diagnosis. It seemed more likely at the time that I was going through an existential crisis.

Nothing Tim could have done would have solved the mystery of my broken body - not even if he quit his job and followed me around with a pen and a pad of paper, jotting down everything he observed, and then analysed the lists every week. The rest of my family and friends had even less to go on, because I didn’t want to talk about feeling gross, even on my good days, when words were not so cruelly elusive. As humans, we are in charge of caring for each other, not fixing each other. People cared for me and that was enough, just like the way you care for your mom, Anonymous, is enough.

Thank you to Anonymous for this question: Why do we, as friends and family, not pay attention to the changes in a person till it’s too late? Is it because we do see change and ignore it because we have busy lives, or is it because our minds don't trigger the change until we have reason?

Monday, November 9, 2009

Up for Debate

If we met in the last seven years, you don’t know that I’m outspoken and confident. Based on what you’ve seen, you can’t guess that I thrive on rambunctious philosophical debate, because my participation in the debates dwindled as I lost my ability to track faced-paced conversations. Social cues that I had once picked up on from another room became mysterious to me, and I couldn’t find the words to explain concepts that made sense in my head. Jokes were elusive. It took me a while to realise that my thought process was slowing down.

I’m better now, but afraid to label myself one-hundred-per cent well, though all of my doctors have officially opened the gates to Healthy Town again. The deportation to Sickville was much more dramatic, which made my recovery feel a bit anti-climactic. I’ll vote for the next politician who runs on the platform that good health news should be delivered with a balloon bouquet and a singing bear quartet. Even smiley face stickers would be a start.

When I was sick, my life was divided into good and bad moments, and some of those moments would last for weeks. Bad days were marked by confusion and a complete loss of clarity. Some people describe it as being in a fog, but I’m not sure that analogy fully captures my experience. Being in a fog implies that the world is difficult to navigate. It was difficult for me to get around physically, mentally and emotionally, but that was more like a side effect. The main issue was connection. Some days, connecting five words together, and then connecting the words to each of their meanings and connotations was impossible, so I couldn’t participate in conversations, and gradually, I lost the tenuous connections that I had with people around me. The connection I used to have with words was how I defined myself, how I related to the world, how I understood life; and I shared that understanding with my friends by discussing and debating everything from gum to politics. So, the loss of connection was a loss of self. Another loss was my ability to write. Writing itself isn’t my sense of self, but it is part of how I make sense of the universe, and how I make sense of the universe is who I am. Make sense?

The tragedy of my bad days was the isolation. Word by word, my friends and family started speaking a new language, and I wasn’t smart enough to learn it. The foreign words became sentences and then paragraphs, and those paragraphs became days and weeks of loneliness. Instead of sharing my feelings, which was really hard without being able to find the words, I pushed people away. When I feel insecure, I need lots of space. I used to imagine twirling around in a grocery store like a mini twister with my arms stretched out on either side to protect my personal space. What was I afraid of? I was trying to hide the fact that I was suddenly struck stupid, because stupid people are treated differently. We’re dismissed.

Intelligence, in the real world, is measured by the ability to communicate, because even the smartest guy on the block is only smart in his head until he proves it. We judge others based on their grasp of language. Here’s an example: I was in the checkout line the other day with my baby girl and a lady behind us commented on how placid she seemed in her stroller. First of all, I’m still not used to the random and strange remarks that come from strangers now that I have a baby. Second of all, I thought she had said flaccid, which completely creeped me out. But once I asked her to repeat what she had sed, I wondered why she had used the word placid, instead of calm or peaceful. Did I judge her as better than me because she knew the proper use of a word that doesn’t come up often in small talk? Not really, but I bet you judged me for writing sed instead of said. You might have thought that I'm part of a younger generation, or you might have wondered if I’m qualified to write a blog. Don’t be ashamed, it’s all part of how we navigate the world. Even if you don’t consciously dismiss someone based on her grasp of language, connection comes from common ground; so if you know what SFW means, but she doesn’t, you can’t talk about SFW material.

It didn’t take too many bad days before I questioned my self-worth. Really, if you looked at a bottle of ketchup and called it mustard, or couldn’t call it anything, you would have doubts too. I’m trying to keep this light, so you don’t want to kill yourself right away, but I have to be honest, my illness was more than misnaming condiments. One of the most frightening experiences happened while I was driving. I had to pick up my sister and brother-in-law when their car broke down, and then drive them home. They had lived in their condo for about a year when this happened. I had been there several times, and I was very familiar with the area. But as I was driving that night, only blocks away from their driveway, I got lost. Suddenly the world looked different. I didn’t recognize the street for a split second. Luckily it all came back to me without any hoopla and everyone was fine. Well, they were fine, and we all got home safely, but I was scared. That never happened again, thankfully. I was sick for years before I was properly diagnosed, and during that time, I didn’t know if I would ever get better. I debated with myself about personality: is it who I am on the inside, or the me that I‘m able to share with the world? And then, after years of having a hard time understanding simple romantic comedy plots, I wondered if I could continue to define myself based on the past.

I battled with depression because in my lucid moments, I knew exactly what I had lost, and I thought that the person I used to be was gone forever. I knew that my good days would not last. It’s as heartbreaking as you imagine it to be – knowing you’re missing a fundamental piece of yourself, and being unable to get it back. I felt empathy for my grandfather, who, after three brain surgeries, was exhibiting signs of dementia. His surgeries and my sickness started around the same time. The dementia has now progressed, and he can no longer recognize me. In my eyes, he is a different man. He even has a different voice. But every once in a while, the grandpa I knew comes back. His voice, his facial expressions, and the twinkle of recognition are there suddenly, and then gone again in an instant. I know in those moments that he is aware of being lost, and I am thankful that those moments are short, because it’s painful.

The different challenges faced by my grandpa and I have sparked a curiosity about the way the brain works. After reading a bit about it, I learned that our brains are powered by chemical reactions. Brains have these things called neurons, which are close enough together to ‘talk’ to each other. The space between the neurons are called synapses, and they play an important role in getting the message across – the chemical is released from one neuron into that space, and then the other neuron reacts to the chemical and opens up to receive the message. I’m beginning to wonder if personality is more like the neurons or the space between them. I think it’s up for debate.

Thursday, November 5, 2009

Face Time

Face Time is an interactive memoir about my terrifying decent into self-loathing and despair when I was diagnosed with two pretty rotten health issues. Don’t worry, though, it won’t be depressing. And like every good hard-knock life story, there’s a happy ending. Except in my case, there was a happy beginning, and I wouldn’t in any way classify it as a hard-knock life.

All I can promise you is a third-row ticket to the storytelling show about the incredible transformation that took place in my personality, and my mental and emotional states as I became sicker and sicker. Slowly, beat by beat and day by day, I became so unrecognizable to myself that I resigned to being someone else, and I didn’t realise exactly how much I had lost until I woke up one morning in the hospital, practically back to normal.

There’s lots you could be reading right now: fear-inducing reports of a plague, accusations of misappropriating tax-payer money, and charges of murder. This blog is not a news article about how to hang a yellow flag outside your door to signal quarantine. This is a story about losing control of my body and the toll it took. It’s the latest theory in mind-body connection based on my very unscientific research - my life.

But it’s more than that, too, because this is an interactive memoir. It will work if you comment on the posts and ask questions. Tell me what you want to know, and the answers will magically appear in future entries. For example, if you read about one of my many visits to a specialist, and you ask about the wait times in Canada, you may inspire an entry dedicated to my opinion that the benefits of universal health care far outweigh the drawbacks. I might even back it up with facts.

My goal is to create a memoir with your help that is richer and more accessible than the one I could write on my own. Let me know what you think of my first post.