Chris’s Story
One morning in June I woke up and the last two fingers on my right had were numb. Like most people I thought that my fingers would “wake up”. The next morning the last two fingers on my left hand were numb, again I thought they would “wake up”. Unfortunately they did not. I called a neurologist to make an appointment, I did but she could not see me until September 28th. While waiting to see the neurologist my hands went completely numb and so did my feet. I could not feel anything in my hand, I could not hold anything. My balance was bad and walking was pretty difficult and my speech was jumbled.
When I was seen by the neurologist an Electromyogram ( EMG). The neurologist knew right away what is was, Chronic Inflammatory Demyelinating Polyneuropathy ( CIDP). She explained what that was but I just could not wrap my brain around this. How did I get this? How is it treated? Will it go away? I was told, “don’t worry, there is a treatment and it is the top of the line”. The treatment, Intravenous Immunoglobulin ( IVIG). I asked her how long would I been getting the treatment, she said “you could have them for the rest of your life.” I made an appointment for a follow up visit and left the office. I got in my car and don’t even remember driving home. All I could think of was, how do I tell my wife? How do I take care of my family? My 90 year old mom had just come to live with us because she could not be alone. What if this gets so bad that now my wife would take of both of us. I was devastated. When I got home and told my wife she could not believe what she was hearing.
When I finally start my IVIG it was November. It took that long to go through all the tests before any treatments would begin. I was still trying to understand what was going on. My birthday is in December and just my luck, IVIG treatment that day.
I had a wonderful job. I traveled to places like France, Italy, Mexico and Brazil. Now I could not do my job that I had loved for 20 years. So now what? I was at Church one Sunday and I was sitting quietly before the service started and prayed. I am a very Faithful man. While I was sitting there I thought, OK, if God gave me this illness it must be for a reason, I did not know what it was but there must be.
So I went home and I started to search on the internet to see if there was a support groups. I came across the GBS|CIDP Foundation. One day I was just sitting, kind of feeling down when I decided that I would not let CIDP define me. I do the treatments and just keep moving forward. I am trying to show the young people that I mentor that no matter what you are dealt, you can still have goals and they can be reached. So I keep doing everything I love to do but I just make sure that I take care of myself. I live my life to the fullest. I have a great support group in that all of my friends support and help me if I need it. They don’t look at me as a disabled man; they look at me like I am their friend Chris who happens to have a rare illness.
It has been 4 years since I was diagnosed and receiving IVIG or as a lot of us call it getting juiced. My hands and feet are still numb. I still have problems walking, I still have problems holding things. My speech is still jumbled from time to time. I live with pain all the time, but I do not let this get in my way. I just keep moving forward.
