Living Rare

Wait, I Have What?


There are days in our lives that are just wonderfully perfect. If you believe happiness is fluid moments and not a destination, then its easier to look back through the past to the days that mattered. The perfectly happy moments. It was one of those days that was also the worst day of my life. Life hitting the proverbial brick wall. I went from blissful happiness to Earth shattering pain in a single second. A quarter flipping in the air, the world still held all possibilities. It landed and my world shattered.

It was Labor Day weekend when I found out I was sick. I worked in retail management and so it was my  first weekend off since the madness of Summer shopping and Back to School. My kids and I spent it together, shopping, going out to eat, basketball tournaments and prospective dog adopting. It was a wonderful weekend kissed by the beautiful late Summer weather South Carolina always promises.

To top off our weekend we went to the daughter of a friend’s three-year old birthday party. It was at a gym full of lots of fun activities. Best of all. there was a huge foam pit. Who doesn’t love swinging into a huge foam pit! Towards the end of the party even I couldn’t help myself. I was swinging in like I was ten again. It was on the very last swing, just as we were about to gather up the kiddies and start cleaning that my world shifted forever. I landed in the soft foam and my friend’s daughter was laughing right next to me. Her laughing face was the last thing I ever saw “right” again. Next thing I knew I was slammed with the worst headache I ever had and a fierce migraine aura at the same time. Usually the aura came about thirty minutes before the headache. This time they came at the same time. I could barely think.

I somehow safely got everyone packed up and home safely but I just couldn’t get my thoughts together, my head was exploding and my eyesight wasn’t clearing. I apologized to my daughter that I just could not help her with her homework and went to lay down.

The world through normal eyes.

About a half hour later, for the first time ever, I called someone to take me to urgent care for a headache.

A bit of background, I have had migraines with aura since the sixth grade. I actually remember my very first one perfectly because I was in church when it happened. Imagine being in church and suddenly thinking you were going blind. It was pretty intense looking up at the big cross behind the pulpit watching it slowly fade away behind sparkling flashes of lights and coming darkness. Aura is what I imagine tripping must look like. I of course wasn’t going blind, and as the aura faded away around thirty minutes later the headache came.

I’ve lived with this migraine cycle ever since. Sometimes I would get the aura and never get the headache. Sometimes I would just get the ferocious headache but no aura. I visited a neurologist once in my twenties for prophylactic treatment. He had listened to my arteries and all the vessels in my head and recommended an MRI before he would go any further. Insurance wouldn’t cover the MRI, “possible preexisting condition.” I couldn’t afford the MRI. That was the only time I ever attempted treatment for my migraines. In retrospect, I am almost 100% certain that MRI would have saved me the storm. It would have also saved that same insurance company thousands of dollars when then levee finally broke.

By the time we got to Urgent Care My left side was numb from my mouth to the middle of my chest. Thinking was intensely painful. They sent me home with pain meds and a doctors not for the next day.

Within an hour I had called someone to take me to the Emergency Room. They did a CT Scan. Again said it was a super migraine. Pushed more drugs on me. Told me to stay home for three days.

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The world through my eyes.

That night and the next day was a narcotic induced, pain filled haze. At that time doctor’s in Emergency Rooms still pushed narcotic pain medicine for migraine. A lot has changed in a few short years, thankfully, because as any true migraineur knows, narcotics do not help migraine pain. Migraine is not a headache, it’s a neurological event.

Sometime late that night the numbness spread down my leg. Using the wall as an anchor I pulled myself down the hall of our house and threw myself through my sisters bedroom door and told her something was wrong and just cried. I was as terrified as I have ever been in my life. My sister called my parents who lived just down the street and my dad took me to the Emergency Room.

After waiting three hours the doctor said it was probably still just a Migraine but they were going to go ahead and do an MRI. The tech put me in the machine played soft music and told me it would only be twenty minutes trying to keep me calm. When he came on and said in a somber voice that it would be another twenty minutes, it flashed through my mind that they had found something very wrong. Then I passed out.

I don’t know how many hours later it was when I came to in a hospital bed with wires all over me. My parents were looking down at me misty eyed and I knew that something terrible was wrong. A doctor came in and explained to me that I had four strokes spread across my brain. Not TIA’s, not mini strokes, full-blown strokes.

It took a whole week and too many tests before the doctors finally found the cause of the strokes. I have a rare disease in my vertebral arteries called Fibromuscular Dysplasia. Even the nurses had never heard of it.

I was finally discharged with a cane, because I still had trouble walking, holes in my memory that have never come back, and legally blind. There are all kinds of other deficits that I have, but those were the main ones. But I also left with my life changed because one second I was healthy and happy and the next I was blindsided and living with a rare disease.

A lot has changed in my life since my diagnosis. I have had another stroke. I’ve had to go on disability. I have PTSD and major anxiety disorder because of the location in my brain from the last stroke. I live on thirteen little pills a day. The good days often lead to a week of bad days. And migraines are life now. If I could go back I would have had the very first MRI. I would have borrowed money from my parents and, even though I would have most likely still been diagnosed, still be living with a disease and still have to take blood thinner, it would just be one pill, and that one pill would have probably made all the difference. But even if time is theoretically fluid, realistically we can’t go back, just forward.

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