Day: May 3, 2016

In the last post I covered a bit about my experience. 

Psalm 5:11-12     But let all those rejoice who put their trust in You;  Let them ever shout for joy, because You defend them;  Let those also who love Your name Be joyful in You.  For You, O Lord, will bless the righteous;  With favor You will surround him as with a shield.

Guillain-Barré syndrome, the immune system attacks the covering (myelin sheath ) of certain nerves. This causes nerve damage.

This rare condition can cause paralysis and lead to death. But most people get better and have few lasting problems. As time went on, I have found that this is not what the truth is, at lease when it comes to my case.  I know a number of people who have had this and can’t walk or breathe on their own.

After I was released from Scott and White Hospital, little did I know that would be going to the Darnell Hospital (Fort Hood) in Killeen, Texas. None of the Drs over there knew much, so they ended up bringing in a specialist.

After many months I was getting somewhat better.  It has been months since I could do the things I loved to do. I could somewhat jog, but there was too much nerve pain  involved with that. Riding a bike was out of the window.  I was getting rather upset that I had so many limitations.  I was very much feeling like my middle name should be Job, from the Bible. So, I had to focus on getting back to my new normal . I wanted to do anything so I could get up and move.

It was at this time that my faith really came into play. I knew that the only way I was going to get through the things that I was going through, I had to fully put my trust in Him. That wasn’t the easiest thing to do on some days. I still have problems with that in some areas of my life. There are many that are much worse off than I am and I had no choice but to give it to God. My favorite Bible verse which is also my daily affirmation of faith is  Psalms 46:1. It says,“God is our refuge and strength, ever-present in times and troubles.” 

While I was listening to the Dr’s and nurses that came into my room, they were talking about how those who get Guillian Barre Syndrome it usually goes away  and the person will never get it again. They don’t say it is hereditary and yet there have been some family members end up with GBS/CIPD and they lost their lives. I don’t think there was anyone in my family that came down with it, but other families have had it happen to more than one family member.  There are so many unknowns with GBS.

About 15  years ago or so, I was noticing once again that something wasn’t right. I was once again getting weak. It also started from the foot and goes up. I was then diagnosed with the CIPD variant of Guillian Barre syndrome. I was just thinking I was having residuals from GBS.  I was rather shocked since my neurologist back in 1980 told me it wouldn’t come back. I would love to have a discussion with them.

So, once again I was having to deal with Guillian Barre. The Dr’s sent me for a MRI and a spinal tap, they then told me I have the CIPD variant of Guillian Barre Syndrome. I was NOT impressed.

What is chronic inflammatory demyelinating polyneuropathy?

• Chronic inflammatory demyelinating polyneuropathy (CIPD) is a condition that arises when the myelin sheaths around nerve cells are damaged. Myelin, the insulating layer of tissue that surrounds nerve cells, helps ensure that signals from the brain are rapidly transmitted to the proper places in the body. When myelin is damaged or destroyed, it can lead to problems with communication between the brain and the body. In CIPD, this manifests as muscle weakness and impaired motor control.

Symptoms of CIPD include impaired motor control, general weakness, and impaired sense of touch. As the condition progresses, it can lead to muscle atrophy and spasms; difficulty swallowing, chewing and talking; impaired coordination; and even paralysis.

Most people who have an auto-immune disease  will find that it leads your body open for just about anything. My body fights the good and bad cells. Since I have a weakened immune system, I am always having to be sure to stay away from sick people. When I did a short talk about Guillian Barre Syndrome and used a handshake as a way to show children just how fast things can spread they are somewhat surprised. They don’t understand how important washing hands and covering mouths can be.  People may not think a simple sickness would be dangerous, but those colds, flu and so on can send me or anyone with a weakened immune system the hospital. Anyone that has an auto-immune disease could lose their life over something as simple as a cold.

I will continue this in the next post. Which will be the last post on GBS/CIPD till next year. I will give more current information and how God is always there.