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.

Dear Heart

Now that I’ve shared the depths of my depression, I want to share my joy.

For about a year and a half I was terrified that my heart wouldn’t be well enough to keep two people alive. I thought my chances of safely having a baby were slim.

I was wrong. I did get better and I did get pregnant. Sometimes life turns out better than you expect.

Before I knew everything was going to be okay, I spent a lot of energy trying to figure out what I did to break my heart. Nobody knows when my heart function started to falter.

When I was younger, I smoked and drank too much, as teenagers often do. I kept on smoking for ten years. Worse than either of those things, I held onto my bad feelings and internalized them. If sadness or anger were ever in short supply, I borrowed from my friends.

I lived with a heavy heart for years.

Seeing my heart on the ultrasound screen brought tears to my eyes because I knew I had neglected him and taken him for granted. I felt guilty for being unaware of my heart’s struggle, for adding to it.

In a mad bargain for wellness, I wrote my heart a letter. I asked for forgiveness. I promised to pay proper attention and to eat less salt. I told my heart that I would fend off stress if he would just keep pumping.

I’d like to believe he was listening.

Are you there sorrow? It's me, Jenn

When I was diagnosed with cardiomyopathy, Dr. Heart told me I had a thirty-three per cent chance of getting better, a thirty-three per cent chance of staying the same, and a thirty-three per cent chance of getting worse.

That left me with a good chance I wouldn’t have a strong enough heart to ever get pregnant. Hearts in pregnant bodies have to work harder than other hearts.

I stared at the glow-in-the-dark hands of my biological clock for about four months before writing this diary entry:

1:50 am – I am struggling with the possibility that my heart will never be able to handle pregnancy.

The waiting list for adoption is long. Baby = forever; five-year-old = five year wait.

Adopting a child from another country costs at least $25,000 - more than the down payment of our house. We’ll never have that kind of money.

1:54 am – I have to brace myself for the possibility that my heart cannot handle pregnancy. Otherwise, I might break down.

I am rigid. I wonder if this is related to my heart condition. I wonder if everything is somehow connected to my heart.

Tim’s right… this is ridiculous. I can’t use the limited information that I have about my body to hold myself hostage. There is still life to live. It’s not about waiting for test results. But it’s hard to ignore that flashing red light.

I’ve been cautious ever since the episode of ‘vertigo’ in the shower. This has possibly saved my life countless times. My body was systematically shutting down to stay safe. Survival instinct kicked in, stopped me from feeling too much and realising too much stress, because my heart is bogged down by stress.

In the end, my fail-safe will be total shut down.

Can death possibly be a survival mechanism?

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

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.