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

At A Loss

Some people are social butterflies. I am a snail. Or maybe a tortoise. I’m not slimy, but I’m not convinced that slow and steady wins the race, either.

My misguided philosophy as a teen was shit or be shat on. Don’t steal that; I want to put it on a t-shirt. The attitude served me well in grade nine when we were all sizing each other up. Looking back, I see why adults tried to enlighten me about the colour grey.

Grey is beautiful. It makes my eyes pop. And there’s that whole vast-world-between-black-and-white thing, too. We all live there, though we don’t always know it or like it. Murder can be self-defence, stolen food can be fed to hungry children and adultery can stem from a loveless marriage.

Grey can be dark. It’s why gay couples are still denied the same rights as other couples in many parts of the world; it is racism passed down from generation to generation; and women in burkas.

Those abstract ideas and those moral decisions, easily debated over coffee, were the closest I got to grey in my teens. I never had to shoot a gun in self-defence or fear that going bare-faced would evoke the inevitable lust of a man.

I had the energy to think about that stuff because I thought daily life was black and white. She was a bitch to me, so I’ll be a bitch to her. He lied to me, I have to dump him. I skipped too many afternoon classes and I was kicked out of biology.

Then, on the cusp of adulthood, I got sick. A grey-green twister ripped through my life, pulled me into the air and kept me suspended for years. On my best days, I didn’t have the energy to maintain a social life and on my worst days, I didn’t have the capacity to understand intentions. It was hard to make new friends.

I’ve always been a tortoise, though, so I can’t blame my illness for that, just for the stagnant years in my twenties. I was a bookworm, not a hop scotch princess. And when I was seventeen, my girlfriend told a woman that Biggie’s song ‘Me and My Bitch’ was about a dog. I whispered to her, “really?” She rolled her eyes and answered, “ No, not really, Jenn.”

I had a long way to go before I got sick, and I’m way behind now that I’m better.

The twister left me at a loss. My teen strategies are pathetic and ineffective. When I’m insulted, I know snide comments might announce my frustration and possibly make me feel better, but won’t resolve anything. The urge to insult back is the karma crusader in me. Since I vowed to fold the cape, I have to come up with a different strategy.

Grey currently represents a mystery illness that takes away my brain and body functions one after the other. I am terrified to go back into that dark funnel. But I’m not sure that black and white exist.

My Heart is Yours

Some couples are always together.

I’ve heard tales of couples who lived an entire life together without spending one night apart. Stories like that always make me wonder about business trips. Does one partner follow the other on every business trip? Do the kids go too?

Maybe it’s an exaggeration. If not, it sounds a bit co-dependent; at the very least, it would be a logistic nightmare. Those stories never inspired a sense of awe or desire in me. Keep in mind, though, that I completed two years of college while living about one hour away from my boyfriend – the guy who is now my husband – so I know we can be apart and not fall apart, and I consider this an accomplishment.

Those facts aside, I’m pretty sure the night of the sleep study was the first night we had spent apart since I graduated from school.

That night, I marched up to the front door of the hospital with my pillow tucked under one arm and a knapsack packed with pills and pyjamas over my shoulder. I walked down the hall toward the sleep labs, unaware that this would be the first of many visits to those rooms.

I looked around the lab while I changed into my pyjamas. There was a hospital bed with a warm blanket and soft pillow. There were curtains on the window, a lamp and clock on the nightstand. The walls were painted a soft pink instead of the standard hospital green. No television. Oh, there was also a big video camera mounted in the corner of the room near the ceiling.

A nurse hooked me up to a machine that would monitor me throughout the night. There must have been twenty-five wires attached to me before she was done – leads to monitor my breathing, pulse, brain waves and sleep stages.

In the bathroom across the hall, I took my pain pills and my sleeping pills. A small monster stared at me as I brushed my teeth. White wires veined my long, dark hair. The wires stuck up from my scalp and then looped down toward my shoulders.

Little did I know, becoming that monster for one night was my first step back to wellness.

I slipped back across the hall in my socks and sat on the bed, testing the firmness of the mattress. With the lights off, the glow from the small lamp gave the room a homey feel. It was only 9pm, so I took a book out of my knapsack and gingerly laid my head on my pillow. The wires made it uncomfortable, but not unbearable.

Still, it was hard to concentrate on the novel. The results of the sleep study would be disclosed after about two weeks, around the same time that I was scheduled to see a neurologist, Dr. Brain, and possibly get a diagnosis of MS.

As anxiety crept into my veins, threatening to keep me awake all night, I closed my eyes and thought of my husband. We were apart that night, but my heart is always with him. The worries quieted and I soon fell asleep.

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.