One year ago…

One year ago I was living a week that I call hell.  From Dec 26, 2008 to Jan 2, 2009 my body was doing things that no one could explain, at least no one I could find.  If you have read any of my blog you have had a taste of what I was living.  Day by day, minute by minute I was losing control of my body.  I still have a hard time remembering many of the details of that week and following month.  I can remember taking several hot baths because that was the only thing we could find that would relieve the pain I was feeling.  The only problem was that each time it got harder and harder to get out of the tub.  I spent one night sleeping on the floor because while I was trying to get to the bathroom I feel and couldn’t move enough to get up, I had my wife bring me a pillow and blanket to the spot I was at and that is where we slept.  Finally after the fifth visit to the ER I was diagnosed with Guillain-Barré Syndrome, and it took me over a week to learn how to say it correctly.

I am sure I could go on and on about the things I have gone through in this last year, but I don’t have that kind of attention span.  Instead I will say, “Read the other posts in my blog to gain an understanding to the things I have dealt with the last 12 months”.  What I will do is try to explain how I feel now.  My body is doing things that are hard to put into words.  My mornings are hard and have seem to gotten more difficult the last couple weeks.  I wake up and find it hard to get out of bed.  If I take my Ambien I sleep great but drag backside really bad until about 10 a.m. or later, and if I don’t take it I have very odd dreams and sleep horribly.  When I get up and start moving around my chest feels weird, it kind of feels like I am out of breath, or have labored breathing, it is very hard to explain, finding the right words is so hard.  Once I get up and finally moving things begin to improve and by the afternoon I am feeling “normal”.  At night I feel like I hit a brick wall and out of the blue I have to head to bed.  It’s not like that every night, but the nights that it’s not are far and few between.

I have been doing as much as I possibly can, I don’t want the two syndromes I have (GBS and Marfan) to control my life.  I realize that because of them I have limitations, but I don’t want them to dominate my life.  I could very easily give in, lie down, surrender.  However I know that the second I do it will all be over.  Once you give in it’s so much harder to get back up.  I have a family, kids that want/need attention, a wonderful wife that needs her husband.  I can’t just give in; I can’t surrender to the illness.

I know that the Lord has a plan for me, don’t know exactly what it is, but there is a plan.  I have gifts that I want to use to further His kingdom; I just need to find the physical strength to use them.  I have no idea how many people’s lives I have affected and in the end it really doesn’t matter what the number is, it just matters that I have lived for Him and done His will.  I try.  I am by no means perfect and will never claim to be, but I do my best to get as close as possible.  It’s like running a race you know you will never win, no matter how hard you try.

God is good, all the time, God is good!

Saved by the blood,


2 thoughts on “One year ago…

  1. Have just read you january blog for a second time and am sorry to see you are still suffering and in pain. I feel so lucky that I can at least t5ype now and am again living a life. God has been good and I hope my husband will join my religion soon. The smmer weather (April has bee n lovely but here you never know what summer will bring) makes one feel so much better. I should have a new blog in the next few days. My best wishes to you and your wife and prayers for your recovery. Jennie

  2. Thanks for being a light! I can only imagine how it feels to be diagnosed with Marfan Syndrome and GBS. I am the parent of a child who was diagnosed with Marfan Syndrome when she was two years old. She has many of the symptoms of the syndrome and we have learned much about her body over the past five years. However, like you, our faith is in God and I am delighted to see that you are choosing to put your hope in the Lord despite any challenges you face. It was encouraging to read your blog as there can be many who complain about what they face. Keep being a light for the Lord! God bless you richly!

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