Friday, June 11, 2010

Late night thoughts

Friday, June 4, 2010

Last night I had trouble sleeping so I tried listening to music. Eventually a rhythm and blues song from the 1960s by a group called The Soul Swingers, called "A Brighter Tomorrow," came on. I started to choke up as I heard the words of the chorus, "Only the strong survive/Be mighty mighty/Show appreciation/Have some inspiration/There's a brighter tomorrow." Then the next song played and then I heard Aretha Franklin singing "Somewhere over the Rainbow."

"Somewhere over the Rainbow "always moves me. Aretha Franklin manages to infuse so much longing and also hope into the way she sings the lyrics. Why can't she leave her dreary present for golden future? If mere birds can do it, why can't she fly away to her brighter tomorrow?

"I don't want to be brave. I don't want to be brave," I began to repeat over and over again. I was being crushed in my bed. I was trying to be good; I was trying to be positive. The harder I tried to be positive, the worse things became.

The promise that things would fall into place once I got home was not coming true. I was getting weaker and weaker. And the news from my neurologist was far from positive.

I didn't have Guillain-Barre Syndrome, I had Chronic inflammatory demyelinating polyneuropathy. My brighter tomorrow, my rainbow had become further away. My neurologist explained that unlike Guillain-Barre Syndrome, Chronic inflammatory demyelinating polyneuropathy will require treatment for the rest of my life. Instead of recovery, I am now thinking in terms of remission and relapse.

When my hands became numb and tingly at the University of Cincinnati hospital, my attending neurologist told me that sometimes Guillain-Barre Syndrome reaches a plateau, and then dips again. As the numbness increased, and typing began more difficult, I became concerned. When I was discharged from the University of Cincinnati and went to the Drake Center, I was told that I was getting better. Not weaker.

While doing research on the Internet, Adrienne and I found the same article in a prestigious neurological magazine, comparing Guillain-Barre Syndrome symptoms with chronic inflammatory demyelinating polyneuropathy symptoms. The article's conclusion was that if symptoms were persisting, despite fluctuations after treatment, eight weeks after the initial diagnosis, physicians need to consider treating for chronic inflammatory demyelinating polyneuropathy.

My symptoms first appeared at the beginning of March, when my calves began to tingle and I could no longer go upstairs or run. Eight weeks after that was April 19, when I was at the University of Cincinnati hospital. That means that while I was in UC, they could have started treating me for chronic inflammatory demyelinating polyneuropathy.

The most common forms of treatment for chronic inflammatory demyelinating polyneuropathy are IVIG, steroids, and immune suppressors. Instead I was getting plasmapheresis and being sent to the Drake Center, a rehab hospital, where they continued to insist that I had Guillain-Barre Syndrome.

After I got home and explained this to my local doctor, he tried to get me to see a neurologist as quickly as possible. He was even willing to write a referral to the Cleveland Clinic. I wasn't sure I could handle a car trip that long, so I asked them to see if my Cincinnati neurologist would move the appointment up. She refused and my appointment remained for June 1, three weeks away. By the time I met with correct be my limiting her, 15 weeks had passed since my symptoms appeared and 13 weeks had passed since I was diagnosed with Guillain-Barre Syndrome.

By nature I am a pessimist. My mind always drifts towards the negatives. A few weeks ago while being visited by a friend; I gave a voice my biggest fear, that "these are the good old days." I am much weaker than I was at that point. I could hold a cigarette and smoke it without being afraid of dropping it in my lap. Now I only dare to smoke when someone is nearby.

In the dark, by myself, I searched for comfort. The only positive aspect my situation I could find was I could admit that I was scared.

One week later

I started taking Prednisone, a powerful steroid, last Saturday. It seems to be helping; I've had more energy and people have noticed that I have more strength and control in my arms. The downside is that I've developed steroid induced diabetes.

Soon I will start taking Cellcept, an immunosuppressant most commonly used to prevent rejection in organ transplants. If it helps to call me down my immune system, I will be able to stop taking the prednisone, which should cure my steroid induced diabetes.

Today was my first IVIG treatment. I will get one a day for the next four days than a month from now I will get another set of five. This will probably be a lifetime thing, unless a new treatment is discovered.

I can't wait to see what I'm like a month now.

I teared up again when I was wheeled into the outpatient surgery at wing at McCullough-Hyde Hospital in Oxford today. The same nurses who held my hand and prayed with Adrienne and I were there. These are the nurses that had worked so hard to help me get into the University of Cincinnati Hospital when I told them I was too sick to go home on April 12. I thought about them often and I'm so grateful to be back under their care.

This is going to be long process, and I need to be strong. I need to be inspired, and I'm talking about heavenly inspiration. I remember that the final stage that victims of a catastrophe is the stage where they redefine themselves in their new lives. The pains I felt this last week were not just physical, they were growing pains. God has a plan for me. I don't know what that it is, but I believe it will leave me a better, stronger, smarter man.

And lastly, I need to show some appreciation; Oxford is beautiful this time of year, I have a beautiful house that has been extensively remodeled to make my recovery more comfortable., I have a devoted wife and son to care for me while I can't care for myself, and I'm surrounded by a circle of friends and volunteers and professionals to help me.

And I have the gift of music to comfort me and sometimes make me realize that I have more power that I think I do. After all, birds can fly over the rainbow, why can't I?


  1. It was so good to see you today! "Somewhere Over the Rainbow" never fails to make me tear up, either. Aretha's version is definitely my favorite, too! I remember in high school, we sang that song, and I had a hard time singing it the first time because I was choking up.

    Anyway, I figure I'll start a blog, too. You're pretty inspiring, you know. And sometimes I have strange thoughts, maybe they would make you laugh. --Laura

    P.S.-- You did good today.

  2. By the way, this is my blogger account. I just started a blog, and it's all your fault. :P

  3. Good for you I'm looking forward to reading your Whacky Point of view.

  4. Hi,

    I just read your blog. I too was just diagnosed with CIDP on June 9th, 2010.
    The doc had suspected it, but he wanted to do more tests to find out. I was going out of town the next day, but he started my IVIg treatment on Monday the 14th. I was hoping that it would only take 1 round, but sad to say, i'm going to have to have another one in 4 weeks. I fell again, and almost hit my head, so 'm back in my electric wheelchair, my house is not disabled ready, so i can only use it in certain parts, so i use my cane as well. I have other diseases, but was told this came from me having Sjogrens Syndrome. There are days I wish i would just never wake up.

    Good luck with your treatments, i know exactly how you feel.