Wednesday, April 28, 2010

You; Me

I don’t think my depression caused my illness. In fact, I actually think that my illness was, in part, responsible for my depression.

I was whacked up the side of the head with Dr. H.C.’s diagnosis not long after we found out my mom-in-law had Leukemia. Fibromyalgia has no cure, no reliable treatment and no guarantee that it won’t get worse and worse year after year.

Young woman should be dreaming about sexy lovers and careers and babies, not wondering if a life-long sickness would make it impossible to enjoy any of those things.

When I was first diagnosed with Fibro, I spent hours questioning my capabilities as a mom. How much would my fatigue interfere with a child’s life? What would she have to give up to take care of me? I agonized over this question: is it fair to knowingly bring a baby into a family with a sick mom? Is it really fair? Would she have a good life?

Don’t get me wrong, I’m not saying that all kids with sick parents don’t have good lives. But I’m sure things like soccer and ballet and weekend road trips to see grandpa are difficult or impossible.

So, fear + long, hopeless road + feeling powerless = depression.

When I was depressed, I wouldn’t have labelled it as depression; I would have said that I was sad. But looking back, I know that I was actually depressed.

Everything was coloured by my sad, angry, and eventually bitter point of view. I had emotional heartburn. The fire that shot out if my mouth burned a path through my world.

The fire created a barrier between me and the people in my life. At the time, the barrier made me feel safe, but after thinking about it for a while, I’ve come to realise that isolation is a bit like not existing at all.

At the very beginning of this blog, I wrote “Intelligence, in the real world, is measured by the ability to communicate”. Really, our entire life is about communicating. We don’t exist without a connection to the people around us.

If we had nobody to talk to all day, I think we would lose our voices. If we had nobody to share our love and hate and fear and hope with, those things would also cease to exist. Without a you, there is no me.

That’s why my isolation, even though it was partially self-induced, was the most tragic part of my sick years. I didn’t really exist.

What do you think?

Sunday, April 25, 2010

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,


Wednesday, April 21, 2010

Minding the Ship

I’ve been struggling with the idea of a mind-body connection since my mother-in-law was diagnosed with Leukemia.

Some people believe we can control our bodies with our minds. What do you think?

Here’s what I know:

My mom-in-law didn’t think her way into sickness and she couldn’t think her way out. I know for sure because she was a god damned inspiration to other cancer patients in the hospital. She was out of bed every day, carting her IV pole around the halls, encouraging others to hold on through the really rough days and to get out of bed on the not-so-bad days.

The cancer went into remission, but then it came back and it never went away. She didn’t do anything to bring the Leukemia back, or to get it in the first place. She didn’t control her body with her thoughts.

I also didn’t think my way into cardiomyopathy. I did live with a heavy heart for years. I was depressed. But I don’t believe my negative thoughts brought on my illness. It was purely a coincidence – something I spent too much time thinking about because I wanted to have some illusion of control over my situation.

The atoms in my body were not rallied into good or bad health by my thoughts, fears or desires.

I didn’t get better by thinking positive thoughts; I took drugs and I got lucky. I was just as depressed when I was diagnosed as when I was taken off the pills. Happiness came after the good news.

What do you think? Am I bitter or missing something? Am I on the right track? Do you think you can control your body with your mind? Did good thoughts bring you health? Bad thoughts bring you sickness?

Sunday, April 18, 2010

Life After Death

I don’t remember much about the day my daughter was born other than what I’ve already written.

Here’s what I’ve been told: I needed two bags of blood after hemorrhaging; I knew who I was but not where, so I had a CAT scan at three in the morning to check for signs of a stroke; and at some point during all of this, possibly because of the magnesium sulphate IV drip, my heart rate dropped to seven beats per minute.

Seven beats per minute.

One of my nurses was five months pregnant, and big enough for me to notice nothing except for the baby belly. The belly set me off when I wasn’t best friends with reality.

I had a nightmare that kept my blood pressure high for days. In my nightmare, the pregnant nurse handed me a pair of scissors and told me to cut my baby. She said that every baby who was born by c-section was only allowed to survive because another baby had been scarred or killed.

If I didn’t cut my baby another baby would die. It was the circle of life. A baby before mine had died to pave the way for us. It was our turn.

It was terrifying because I honestly believed that the nurse wanted me to cut my baby’s stomach open with scissors. The nurse who was in charge of my life in the ICU.

Tim stayed with me to keep me calm and rational. He sat in an uncomfortable armchair beside my bed until I fell asleep at night, and then he slept in the Quiet Room a few feet away. He was also there for our daughter, who was stuck in NICU while I was getting better.

He rubbed my head and told me jokes. He listened to my paranoid ramblings, took my fear seriously and helped me see what was real and what was not. He picked me up out of bed, put me in a wheelchair and brought me over to our baby whenever the nurses said my blood pressure was stable enough.

His love was the only thing that dispersed my fear long enough to lower my blood pressure. His effect on me was more powerful than the labetalol they were feeding me through IV.

How did I get to be so lucky?

When I was finally moved to the maternity ward after days in the ICU, my roommate was also moved from ICU. She had preeclampsia much earlier in her pregnancy than I did, and her baby was born way before term.

She was fine, but her baby would have to stay in NICU for weeks. Her story made me want to curl up beside her in her hospital bed and brush her bangs out of her eyes. She actually lived an hour north of the hospital, and she could only stay in her room for five days. After that, she had to find a hotel, or pay per day to use the hospital’s family house.

Her little preemie was fighting for his life, trying to use his underdeveloped lungs in the incubator next to our plump little baby. Our baby was perfect; she was whole.

My roommate had to listen to our baby cry and coo when we were able to bring her into our room. She had to listen to the lactation consultant give me breastfeeding tips. She was an uninvited guest to our joyous celebration while her little baby struggled down the hall. It must have been heartbreaking.

As for me, the luckiest girl in the world, I was the live, proud new mom to a perfect baby girl. And I woke up in the hospital basically the same girl I was before I was sick. I can’t tell you if it was the drugs, the detox effect of ICU, or some kind of near-death phenomenon that righted me.

I could have basically been right after the heart meds, but didn’t give myself enough time to fully adjust before getting pregnant. Or something else was happening.

Whatever it is, here I am, the luckiest girl in the world. My husband loves me unconditionally. My baby and I are alive. I am myself again.

Life after that experience has been amazing so far.

Thursday, April 15, 2010

You're Special: ICU

This is the third part in a series. You can read the first part here, and the second here.

They wheeled me right to the ICU from the recovery room after our baby was born.

My experience in ICU is actually the beginning of a very traumatic time. I’ll get to that soon, but first I want to write about seeing a specialist while you’re in a hospital bed.

When you’re conscious and alert, it’s reasonable to shoot for goals like reading cues and writing lists. When you’re wheeled into a room on a stretcher, it’s not.

There isn’t much you can do to control the situation when you don’t know where you are. My situation, being in the ICU, was extreme. Sometimes people don’t ‘know where they are’ even when they literally know where they are.

If you’re so tired/confused/fucked up that you can’t contribute in any meaningful way to your exchanges with your specialists, I have one piece of advice:

Trust them.

For the most part, doctors are competent, caring people. They know the ramifications of their mistakes. They stuck it out in torturous med school because they want help people. They would rather shove their egos into a donkey’s ass, strap that donkey on a rocket and launch it into space on a crash course with the sun, than kill you.

They work long hours trying to figure out what is wrong. They give up time with their families to keep us alive.

Most people are good people; this includes specialists. Unless something in your gut says NO!, trust is a good thing. And good or bad, trust may be your only play when you aren’t conscious.

Just because I had a really bad experience with one of the seven specialists I saw doesn’t mean it’s something everyone should be on the lookout for. It won’t necessarily happen to you.

I learned a lot about the relationship between relaxation and getting healthy in the ICU. Trust starts with letting go, relaxing your fears and erasing those negative mind-tapes. Sometimes it’s easier when you don’t have any other choice.

Of course, I always had an advocate by my side. I was the luckiest girl in the world.

Sunday, April 11, 2010


When I was in labour, they monitored me and the baby very carefully. My blood pressure was high enough to induce seizures and strokes. A stroke might have killed me.

Nobody explained exactly how my baby could have died, and I refuse to look it up, but it was a very real concern.

I was admitted and induced about 3 pm on a Tuesday. I was moved to a delivery room that evening, not because I was ready to push, but because they wanted to watch the baby closely using an internal foetal monitor.

The crash cart took up so much space in that little room.

Late at night, after what seemed like forever, I gave into the pain and asked the nurses to call the anaesthesiologist. That was a nightmare. My blood was so thick and my veins so swollen, it had taken two nurses and several tries to get an IV line in my wrist that afternoon.

The anaesthesiologist could hardly see my spine because of the water retention. I could tell he was nervous. I actually felt bad he got such a difficult patient.

That nightmare was worth it. I got some relief and a bit of sleep between contractions.

I had really wanted to give birth naturally; avoid a cesarean section at the very least. The OBGYN let me press on until the next day, because the baby was still doing fine. But I just wasn’t dilating, so I had to go under the knife.

As the surgeon cut into the first layer of skin, I said “ouch!”, and he immediately stopped. I didn’t just feel tugging, like they said I would; I felt the sharp pierce as the scalpel broke through my skin.

My body doesn’t play by the rules.

So they fed more drugs through my epidural line, waited for me to feel less, and they started again. This time I didn’t feel the first cut, but I did laugh out loud when the surgeon cut into the next layer. It tickled.

Amid the chaos, our beautiful baby girl was born. I knew she was okay when she cried. I was conscious just long enough to see her squishy newborn face sticking out of the receiving blanket when a nurse brought her into my field of vision.

My life was changed.

Wednesday, April 7, 2010

Gentle Calm

I wrote in my last blog entry that I wasn’t worried about the odd things that started happening near the end of my pregnancy. I was in good hands, being watched carefully. I was at the weekly check-up point. Everything was okay.

EERRRT, Hindsight yelled. Wrong answer.

Things change quickly in pregnancy. And it’s hard to see the bigger picture when you’re measuring day-to-day. Over and above that fact, my body doesn’t play by the rules.

So, at thirty-nine weeks pregnant, I drove myself thirty minutes down the highway for my prenatal appointment. I waddled into the office, a little out of breath and a lot exhausted. We discovered another five pounds in water weight when the nurse weighed me. My feet were white Shrek feet. My blood pressure was high.

My doctor was very calm. She didn’t tell me what the blood pressure numbers were, and I didn’t think to ask. She simply told me that I needed to go to the hospital straight away. Her voice was even and soothing when she explained that the nurses would check the baby with a non-stress test, and the on-duty OBGYN would check my cervix and decide whether or not to admit me and induce.

With a smile, she said I would more than likely be a mom in the next few days.

The receptionist offered to walk me to the hospital, but I didn’t want to leave my car in the wrong parking lot, so I drove. She told me later that she was really worried about me and the baby.

But when you’re that sick, people do everything possible to keep you from freaking out. Soft and gentle tones and facial expressions are a must for everyone with high blood pressure.

They were expecting me in the maternity ward. After they got me settled into a comfy green gown and onto an exam bed for the non-stress test, I called Tim. I was eerily calm myself, though only as a reflection of what I’d seen so far.

The baby was still doing great – no worries there. I was admitted into the only single room on the ward. In case you’re wondering, that is not a good sign, but I didn’t know it at the time. The single room happened to be right next to the nurse station.

They were monitoring my blood pressure every thirty minutes. Again, the nurses didn’t tell me how high it was, and I was too stunned to ask. The OBGYN decided to induce. He told me that it would be a long process, so it was okay for Tim to finish his day at work, pack our overnight bag (yes, I was unprepared), and then drive to the hospital.

When he got there, he saw the numbers on the blood pressure machine. 199 / 119 (with medication).

No wonder people were worried! Normal blood pressure is below 120 / 80, and hypertension is defined as blood pressure consistently higher than 140 / 90.

Preeclampsia is a serious complication that can result in the death of the mother and child. It can only be cured by giving birth. The good news: the baby was developed enough to make this a very attractive option. If I was diagnosed with preeclampsia before the baby was ready to survive outside of my uterus, we might have had to wait.

Also under the category of good news: I have no doubt that I would have died, maybe my baby too, if we weren’t in a hospital. As little as eight-five years ago, we also probably would have died.

What happened in the next few days is a blur, but I’ve pieced it together with some help.

Sunday, April 4, 2010

Anxiety vs Reason

Two amazing things happened at the same time: health and pregnancy.

I had faith that I would have enough energy to keep up with the family we were starting. My heart was light and strong.

At the beginning of my pregnancy I worried more than most soon-to-be-first-moms. Every missed beat was followed by a rumbling through my chest. Because hearts pump the blood that carries oxygen, I had some anxious moments wondering if the baby in my belly was getting enough to survive.

I asked my doctor, instead of obsessing, and I trusted her answer. Deep breathing calmed me down on several levels.

Since diagnosed with cardiomyopathy, I have been the luckiest girl in the world. My heart was fixed with medication, not surgery or a transplant. I am alive and captivated by life. We got pregnant quickly.

I also had an amazing, easy pregnancy up until the very end.

No morning sickness, just a little nausea at night; no trouble sleeping in the first or second trimester, just weird dreams about the huge upcoming change; no hemorrhoids or swollen feet or hairy nipples.

And the baby did great, too, in my belly. Every ultrasound showed movement and all the good stuff you’re supposed to see in ultrasounds.

Yoga kept me focused, limber and relaxed. If you haven’t tried it, try it. Even when things started to get a bit weird, yoga helped me keep it together.

Suddenly, at the end of my perfect pregnancy, I wasn’t peeing as much as I should have been, I started gaining about five pounds a week and my blood pressure was up every other prenatal check. By my thirty-eighth week, my face was so fat that I could hardly find my eyes. And those thin ankles I was telling you about could no longer fit into my boots.

I wasn’t worried though, because the baby was still doing great. I kind of thought I had been getting off light up until that point; I was just paying my dues.

Sometimes reason keeps you moving, and sometimes it trips you up.