Monday, August 25, 2008

A Lifetime of Sickness

People with severe or chronic illnesses are constantly on my mind. My husband, Joey, has 3 chronic diseases. He has bipolar depression, which is about as fun as it sounds, but is very familiar to most people. In May 2003, he was diagnosed with Arnold Chiari Malformation. A mouthful that most doctors haven't even heard of. We've actually had the joy of explaining the disease to most new doctors he sees, but unless it directly affects them or why they're seeing him, they don't really care or want to learn about it. Although sometimes this is true even of the doctors who do need to know more about it. But anyway...he has very severe leg pain, has had it most of his life. No one was ever able to figure out a cause until they did an MRI and a neurologist in Morehead found it. However, he was a doctor who didn't care, and told Joey to come back and see him when he couldn't walk. Gee, thanks for the help. Eventually he found an awesome general doctor who researched it and led us in the right direction to seek treatment. This led him to The Chiari Institute on Long Island in NY. They are awesome, very talented doctors, who have studied and researched this disease for many years. They were able to determine that he needed brain surgery to relieve the pressure his brain was putting on his spinal cord (a very simplified explanation, but it might take all day to provide the details). They performed the surgery in October 2005 and after a long, hard, painful recovery he got a little bit better for a little while. Then it was back to the same old stuff. Along with the severe leg pain he has horrible headaches (again a simplified way to say it, but how else to say really bad head pain?), memory issues, vision problems, urinary problems, and balance issues, among many things. After a lack of improvement following the brain surgery, they did another MRI and found that he also had Tethered Cord Syndrome. This is where your spinal cord tethers to your spinal column (I think). They did lower back surgery to detether his spinal cord (cut it loose, basically) in August 2006. He should have had immediate relief after the surgery, but it seems that because it was tethered for so long (because so many doctors overlooked it), there was too much nerve damage. He is now on constant pain medication, has been hospitalized too many times to count, and is on disability because he can't work.

My husband suffers every day of his life. Some days are better than others. Some days he can get up and hang out with me and the kids, and go places with us. But there are a lot more days that all he can do is lay in bed and hope the pain lets up. I worry about him constantly. I try to keep a positive outlook and be his bright shiny light when he gets to the darkest places. It's hard for him to stay upbeat when dealing with these things every day, so I try to do it for him. Sometimes it drives him crazy because it seems so pointless, but the other option doesn't work for me.

All these things, however, lead me to wonder about our God. Why does he allow this kind of suffering? I'm not an incredibly religious person. I went to church when I was younger, and recently I've tried to get back into the routine of going. But it's hard. It's hard, but I feel so invigorated after I've gone to church and sang songs of praise, and listened to the pastor give such wonderful, interesting sermons. I choose to believe that He only gives us what we can handle and that there's a reason for everything. Maybe he allowed Joey to have this disease so he can counsel and support others with the same problems. Maybe it's to bring us closer as husband and wife, and as a family. Maybe there's a reason God hasn't revealed to us yet. All I can do is have faith that there is something out there bigger than us, watching over us. Tonight, and every night, I say a prayer for those who suffer and those people who support them. I pray God watches over Joey and gives him hope through the darkness, and the ability to see through it. I pray that God gives me the strength, love, and wisdom to be there for him as he needs me to be. Most of all, I pray that God gives peace and understanding to all those who suffer.

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