Thursday, May 27, 2010


Monday, May 24, 2010

Yesterday, Sunday, was the first time I have felt normal since I returned from the hospital. I went to church, visited with friends, ate restaurant food, and just had a really good time. I didn't realize how oppressed I was feeling by my stay in the hospital. Feeling normal is the exception for now.

I've been home from Drake Hospital for over a week. It is been over a month since my last plasmapheresis treatment. Despite my ongoing physical therapy and occupational therapy, I'm still getting weaker. My arms and hands are growing less reliable everyday. Picking up or holding objects like my toothbrush or my cell phone is becoming increasingly difficult. My arms' range of motion is smaller every day.

I am becoming convinced that I have Chronic Inflammatory Demyelinating Polyneuropathy. Chronic Inflammatory DemyelinatingPolyneuropathy, or CIDP, is related to Guillain-Barre Syndrome. Both illnesses present in very similar ways; they are auto immune illnesses that attack the nerves, starting at the lower extremities and working up. CIDP requires additional treatment. Often steroids are prescribed, along with ongoing IVIG treatments (IVIG treatments are also very expensive. The ones I had a Jewish Hospital were over $10,000 apiece). Steroids are powerful, anti inflammatory medications that have very serious side effects.

It is now Wednesday. It's been taking me awhile to write this entry. I decided to start writing as a way of helping me deal with the changes that are happening in my life. However, life at home is pretty busy and loud. It is hard to find a quiet space work where I can set up my computer to dictate to during the day. Plus I am receiving occupational and physical therapy at home now. Add to that the 1 to 2 hours a day I spend doing exercises plus the 2 hours it takes to get out of bed and eat breakfast, that leaves not a lot of time to write.

I put my blog online and shared it with other people because I thought it would be a good way to keep other people informed. I quickly realized that to people who commented were keeping my spirits high. Your words of encouragement mean so much to me.

The most amazing thing that has happened since I got sick is the support Adrienne and I have received from other people. It really has been a blessing. I was trying to illustrate that by describing something that happened to me in church on Sunday, but I'm not sure I was able to get the point across. So I decided to address you, my dear readers, directly and tell you that no words could express our gratitude. Special gratitude for those who didn't just call or send a card, but came and worked to get the house ready, brought over a meal, dropped by to do errands, and donating items that we need. Is truly been an unexpected blessing. Every gesture, small or large, was its own miracle. Your efforts have been the voice of God reassuring me that I'm not alone.

Yesterday in church we sang Michael W Smith's Forever. The chorus assures us, "Forever God is faithful, forever God is strong, forever God is with us." I felt tears well up in my eyes. I didn't know if the words were assuring me or mocking me. I was feeling very scared because I knew I was not getting better. I could feel myself shrinking into this body size to prison, with no idea how long my sentence will be. Fears about my future overpowered me. Despair about my present shape pushed me further down.

How much lower, I wondered, do I have to go before this turns around? All I want is my life back. I miss being strong. I miss being independent. I miss being able to stand up.

During the Passing of The Peace, the congregation walks around the sanctuary and greets each other with a hand shake, wishing the peace of Christ on each other. I would always make sure to greet the people who couldn't walk. Today people came to me to remind me that I am part of the body of Christ and worthy of His love. They shook my hands and touched my shoulder, and said that they were praying for me.

God has not abandoned me. He has brought me to a place where I can see Him more clearly than ever. That was in the faces of those who shook my hands, touched my shoulder and told me that they were praying for me. This was God being faithful and strong with me.

I don't know what my future holds. I may never walk again or spend the rest of my life taking powerful drugs that will affect the way I look and feel and behave. Or, through lots of hard work, therapy, and patience, I will be restored. Only time will tell. The important thing and hard thing for me to remember is that I am OK, and I will continue to be OK.


  1. Mike,

    Just take one day at a time, and when that feels overwhelming take 1 minute at a time. God is with you every minute!

    You remain a true inspiration to me!

  2. God is with you, as are your friends and family. I know you don't always feel this way, but you got this. Keep up the good work, and keep up the high spirits, and just remember even your PT from last week said she could see improvement in your leg stregnth. Its baby steps, everything in life is baby steps even the things that don't come across as improving or getting better, its just a much smaller, even sometimes unnoticeable baby step. Sometimes we take bigger baby steps and sometimes we take smaller baby steps, but either way, they are steps. I know you well enough to know you will do whatever it takes!! Even if that means accepting your inability to control the situation. Just don't give up! Call me when you are up for a visit, I have something for you I meant to bring you earlier.

  3. I'm a new follower...I had a flu shot on 10/12/07...on 10/15/07 I was paralyzed, on life support, spent the next 10 days in a coma...47 total days in hospital. I was 56 at the time. I'm 90% back to normal ~ it's the 10% that takes it's toll...yes I walk, drive, hold down a job...but when I come home from that job I usually am so exhausted that I sleep at the dinner table...if I manage to work a 5 day week I sleep one whole day of the weekend...I have trach scar, stomach tube scar, IV port scars ~ but they don't compare to the scars on Jesus' hands and feet...when I was 36 days of not touching the floor HE carried me thru...I will be praying for you...

  4. Mike:

    Every second of every day I think of you and Adrienne. You are always in my thoughts and prayers.
    Bill says hello and wants you to know you are in his thoughts and prayers also.

    Your positive attitude is refreshing.

    Love, Donna

  5. God only gives us what we can handle :)
    He also sends wonderful messages and lessons through us.
    This happened to you for a reason...not by chance and not because you are a rare 1 or 2 out of 100,000 souls...
    It's simply because you are a rare soul.
    God has plans for you...