Nerve Disease

It would be helpful for me to remember that I have a nerve disease. Essentially, cancer of the nerves.

Although it mainly effects the nerves in my legs, arms and core, it is now spreading to my organs and even my brain.

As I couldn't sleep last night, I sat and watched podcasts and video conferences from my doctor about my disease. I learned so much. I am always learning and understanding more clearly.

Because I have complete sections of nerves that are destroyed, the brain sends signals to those nerves, the nerves are unable to get the message due to the damage, the brain then sends messages stating emergency in the nerves which causes excruciating pain. In addition to the pain, the brain also struggles to find a "home" for these nerve signals, so they shoot them back to the brain and bounce around. This can cause many different issues depending which signals were sent and where they returned.

For me, many of the misfired signals result in seizures. I have battled several different types for many years now. I have a better understanding of the different seizures I endure and how to cope with them. I know that after a grand mal seizure or after rolling seizures, I will be absolutely exhausted for at least 24 hours. I know I will be weepy and cry for no reason. It is just side effects of the seizures which are side effects of my disease.

Now that the disease has struck my brain, I must also endure how it effects my mood and my perception of my life. When my disease is under control, or not brain firing, I feel the blessings in my life and the tender mercies I have been given. I feel the blessings along with the pain. However, now that the disease has switched and started new symptoms, I am having to adjust for them and learn to recognize them for what they are and then learn how to cope with them.

When the nerves fired to certain parts of my body are completely dead, it signals a rapid response. Our bodies are so complex and so intricate that the weapon they use to get us to act or know something is critically wrong is anxiety, worry and fear.

When a heart attack starts, fear and anxiety is invoked. That anxiety causes one to react and call for help. When we have a seizure, again anxiety kicks in telling us we need to seek help. This goes for all critical diseases and systems.

With the nerve death now occurring in my brain, the nerve response system reacts on the fritz sometimes. Today it may attack the pain center of the brain and cause malfunctions. If it does, there are absolutely no medications that can calm or ease the pain. The only treatment for prolonged suffering is medically induced comas. If it responds in the system of alarms, that something is wrong, anxiety kicks in. 

So, as those helpless feelings roll in, I need to remember, it is simply the disease and nerve malfunctions that are causing me to feeling helpless and anxious and that I simply cannot go on. I need to hold on tight and remember that those feelings will pass. That the clouds will again dissipate and I will eventually feel the sunshine on my face and see the bright colors and joy that fills my life.

I love the sunshine and days that the flowers are all in bloom and spring is in the air, as we all do. I just need to remember, that as dark and cloudy and stormy as the dark and dreary winter nights can get. That the sun will shine again. That my world will again have a spring. That the clouds will part and the sun will break through and the warmth will again be felt on my skin causing the constant chill to depart.

In our lives, we all have dark winter days that are cold and bleak. On those days, I pray I can remember that Winter always turns to Spring and that life always looks better in the sunshine than the dark. I am trying. It is a daily struggle. But, I am hopeful that as I am armed with more understanding and more clarity on the disease that has taken my body hostage, that I can fight it better and hold on to the fact that the sun will shine again. Please be patient with me as I try to figure it all out. I am grateful for your prayers. It is thru prayer that we are brought to a greater understanding of where to find the light and how to beat the darkness. As I feel everyone's prayers, I know that the clouds break free and the sun shines. Thank you for the part you play in easing my burdens and calming my storms, there are no adequate words to sincerely express my gratitude.