Thursday, March 19, 2015

What I said to myself to feel a little better.

it happened really fast.

I was in the emergency room about an hour when they confirmed I had GBS.  Right away they said I needed a spinal tap. .That scared the crap out of me.  I had been in the ER about half a dozen times in my life before. It was easy, I needed them to wrap up my ankle, give me a couple of stitches or shot of morphine and then I knew I'd be out of there. But when they rushed me into the back of the ER for a spinal tap I was scared. I looked up at the doctor and said, "Wait a minute. You're going to do this to me, right? Not one of my kids? Okay!"

I had an epiphany, I realized that I had made a deal with the devil. I traded places with one of my kids so they would not have to have a spinal tap.  It actually turned out that a spinal tap was not as bed as I've seen on all those stupid TV shows. It wasn't fun, it was just about as bad as having a cavity filled.  Except, when you have a cavity filled you are sitting up in a chair. The spinal tap procedure is done when you're in a much more awkward position.

Over the next 135 days I was in the hospital I had to endure some real shit. In the step down unit / intensive care I had to spend every minute of the day with a blood pressure cuff on my arm and IV in the other arm. For eight days I had little stickers on my chest so they know right away if I stopped breathing. Except when he took the stickers off to put me in the MRI machine for 90 minutes. All the time I kept saying to myself better me than one of my kids.

This is how I remember the EMG doctor
If you're reading this you probably don't know what an EMG test is.  You really shouldn't. It's a test used to determine how much of your nerves actually exist. They test the electrical conductivity of your nerves. For the first half of the test they shove a small tuning fork like device into the softest parts of your flesh and then put electricity through it so they can see how it comes out on the other side of your limbs.  When the doctor did the last one, he put the probe in the soft part in the joint of the knee. Then he said when I tell you to grit your teeth and make a fist. But I said I can't make a fist so he quickly did it anyway and I didn't just see stars the world went white for about five seconds.  Then the fun started, they had to go under my skin with electricity. He used pins.  Not little acupuncture pins, but two inch long pins that they had to stick into my skin and wiggle around until they found my nerves. Then they turned the electricity on.  Oh, one more thing, This all happened the first hot day in May before they turned on the air conditioning in the hospital. The whole time the doctor was dripping with wet as he sat over me. I confuse my memory of the doctor with this image from Indiana Jones.    Still, better me than one of my kids.  When I was in rehab they told me they were going to do another EMG test. The staff psychiatrist came in right away and told me she would spend some time with me later to help me prepare for this test. A half hour later they came to get me for the test. No preparation. When they did the third one I didn't give a shit anymore. But I did ask that doctor how he did it to children. He smiled and said I don't want to talk about. (I just sent an email to my neurologist asking, yes asking for another EMG test. FML)

Central line, installed.
Then I had a relapse. I had to go from rehab back to the hospital. Better me than one of my kids.  They said instead of just giving me injections of stuff, they were going to filter my blood. To do this they needed to install a central line. I had no idea what that meant. When I heard them say carotid artery I was not happy. I had to spend five days like this. 

I just kept thinking about deal I made with the devil. In some parallel universe that really didn't exist one of my kids or my wife had these things sticking out of the side of their neck for five days.

Then I went back to therapy for a few weeks and had another relapse. They changed my diagnosis. It was no longer the rare, but eventually you will get better, Guillain-Barre Syndrome.  Now I had the super rare Chronic Inflammatory Demyelinating Polyneuropathy.  Fuck, I got something with the words chronic and poly in it.  And after the second relapse they decided to try chemotherapy. They really made that scary, but I had no side effects.  The only thing that could be worse if it was my wife or kids.

So for 135 days my wife and kids visited me in the hospital. The only thing worse is if I would've been visiting them.

Well, now I've been home over six months. I don't want to sound like an ass hole, but I'm really glad this didn't happen to my wife. Because I really don't think I could take of her as well as she's been taking care of me. 

Also, I might not be the dad who will run 30 more marathons, but I will be the dad who will show his kids how he can climb out of a really deep hole. 

And I will also be the child that will show his parents he will get better


  1. Thanks for the update. While I look forward to your Metrocard updates when you're out and about, here's a story of someone else like you:

    1. haha, haha, they could have written that about me.


You do not have to be nice!


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