I had heard the phrase a number of times in my life- "The Emotional Rollercoaster". Perhaps I had even said it myself. It's the one ride no one is standing in line for, the ride no one enjoys. I am on it now.. Its a fleeting thing and the ride doesn't last very long,but the impact is lasting. I work hard to keep my spirits high. Reading my Bible and studying it is the primary source of strength and it helps a lot. Where your spirituality is, there the physical mind will follow. My loving family, and friends strengthen and encourage Shannon and me. There is no lack of strength around us. But....(there is always one) I feel frail. I don't feel sorry for myself, just frail.
This is a feeling I have never known. Although as a young kid, I was always the smallest and skinniest of the bunch, I never felt frail or weak. This body I am in now has taken me far. The physical strength I once possessed was not honed by weights or multiple gym visits. It was born in me. It come from a family where both man and woman are strong in character and physically. My grandfather was pulp wooder. I never saw my father touch a weight in his life but he can handle anything. My mother worked hard all her life. My aunts and uncles never back down from any task. Hard work, long days of physical labor outdoors, pushing, lifting, and pulling built the man I had become. As a 105 lb freshman in high school I could squat over 300lbs easy. Is it conceited to believe I could do anything? In my mind and heart there is no physical obstacle I cannot move. If you know me then you have seen it. Hence my dilemma. What I have possessed for over 30 years has been taken away in less than 1 month.
The impact on my life and body changing in such a short span of time is emotionally hard. True, health is not everything, but mentally how can one just be hunky dory everyday while dealing with something like this. I know eventually it will get better but right now I am sad. I am not sad everyday but right now I am. When I sleep at night I have dreams. In those dreams I am healthy and doing the things I like and having fun. Its when I open my eyes in the morning and the double vision is there, my arms are too weak to pull myself out of bed, my first step is unsure because I cannot balance, my hands so weak that I cannot hold a bar of soap to bathe or wash my hands, that's when it hits me.
This is the reason it has impacted me emotionally. The changes I have gone through each week have been drastic. Its been educational for me too. Last week I could manage some things and then this week another little part of me is taken. This week my, jaw muscles. Things we take for granted because they happen so naturally mean so much to me now. We have a refrigerator full of delicious meals that have been provided for us but I cannot enjoy them because chewing is too difficult. I can try but end up swallowing food that is not chewed well then it makes me sick. What muscle group will be affected next week, I don't know. My feet are starting to get weaker so time will tell.
Putting this in writing helps. I can hear myself think. The words just flow from my mind, to my fingers. There is no evident order of things. Just thoughts. Will I read these again? Perhaps. Will I feel better In a little bit? Sure. Am I going to get better? Definitely! Even if not 100% now, I have a promise so grand that it inspires me everyday. (Revelation 21:3, 4) My emotions are calmed with that. I am not a weak man. The body is, but my spirit and my heart is not. I will use what I have and know to continue helping those around me. Perhaps this has opened a way for me to exercise more than just physical muscle but the one that moves each of us-LOVE.
The ride has come to a stop. I take a deep breath and gather my thoughts, Wow that was something else. The gate is opened and I leave to enjoy the rest of the day. I know I will be back one day and I can deal with that.
Thursday, May 29, 2014
Wednesday, May 28, 2014
Catching Up
It has been a month since my diagnosis. Time hasn't flown but it hasn't stood still either. The first couple of weeks were the hardest because I had to wrap my mind around the fact that this was not just going to go away. Learning my limitations and remaining humble about them helps.
Over the past few weeks the disease has begun showing how ugly it really is. What started out as ocular(eye) has become generalized(spread throughout). My arms have become much weaker. So weak that I cannot raise them above my head. It takes special effort to do daily activities like bathing, brushing my teeth and even my hair(which is why i shaved it all off). My legs, specifically the calf muscle, are also affected. Walking is very difficult. Its amazing how our muscles work so seamlessly when healthy. My calves feel as though I have done a thousand calf raises, non stop! I must walk very slow and concentrate on each step since the muscles that help me balance are affected too. I've fallen twice. Falling is no fun because I can't catch myself with my weakened arms. No one said it would be easy, right.
This week, the problem I most feared occurred. My jaw and facial muscles have weakened. Chewing is difficult. I love good food. Eating something as simple as cereal is going to be a ordeal. I must learn to take smaller bites, and chew slower. Between bites I need to rest, then start all over again. It took me 20 minutes to eat a small bowl of cereal this morning. A few weeks ago this would have been emotionally devastating. It saddened me, yet I am able to cope.
My wife, family, and friends have been so good to me. Those who are suffering or taking care of someone who is suffering with MG have been very encouraging. My family and friends are so supportive of my wife and I. We cannot begin to thank them enough for the cards, phone calls, messages, and visits. Our hearts overflow with joy each time.. Without a good team behind me I would not be looking forward to this journey.
My motto is, "I have begun crossing the bridge, I might as well stop and fish". I have come to realize that this is going to take time. There will be good days and bad. I will deal with each one accordingly. This is a temporary speed bump. It will slow me down but it will not stop me. I WILL BEAT MG!
Over the past few weeks the disease has begun showing how ugly it really is. What started out as ocular(eye) has become generalized(spread throughout). My arms have become much weaker. So weak that I cannot raise them above my head. It takes special effort to do daily activities like bathing, brushing my teeth and even my hair(which is why i shaved it all off). My legs, specifically the calf muscle, are also affected. Walking is very difficult. Its amazing how our muscles work so seamlessly when healthy. My calves feel as though I have done a thousand calf raises, non stop! I must walk very slow and concentrate on each step since the muscles that help me balance are affected too. I've fallen twice. Falling is no fun because I can't catch myself with my weakened arms. No one said it would be easy, right.
This week, the problem I most feared occurred. My jaw and facial muscles have weakened. Chewing is difficult. I love good food. Eating something as simple as cereal is going to be a ordeal. I must learn to take smaller bites, and chew slower. Between bites I need to rest, then start all over again. It took me 20 minutes to eat a small bowl of cereal this morning. A few weeks ago this would have been emotionally devastating. It saddened me, yet I am able to cope.
My wife, family, and friends have been so good to me. Those who are suffering or taking care of someone who is suffering with MG have been very encouraging. My family and friends are so supportive of my wife and I. We cannot begin to thank them enough for the cards, phone calls, messages, and visits. Our hearts overflow with joy each time.. Without a good team behind me I would not be looking forward to this journey.My motto is, "I have begun crossing the bridge, I might as well stop and fish". I have come to realize that this is going to take time. There will be good days and bad. I will deal with each one accordingly. This is a temporary speed bump. It will slow me down but it will not stop me. I WILL BEAT MG!
Monday, May 5, 2014
Three weeks to WEAK!
How does a healthy and strong 34 year old man go from lifting logs to barely able to lift anything? Well first I have to go back to April 9th the day before my symptoms first showed. My niece and I hung out together, it was her spring break week. This was made possible because I was laid off from my job at the beginning of the week. I felt fine. My father in law and I even loaded up some firewood on my truck.
April 10th is went it all went downhill. I worked in the yard most of the morning as I finally had free time to do so. During the morning I began having difficulty focusing. No big deal. Since the pollen was heavy it had me thinking perhaps it was my contacts. I cleaned them, but no change. I switched them, still no change. I took one lens out and it improved some yet my focus was not good. I finished my work, cleaned up, and sat down to rest and watch TV. All of sudden my one television became TWO televisions! It would happen on and off through the day. I decided to rest up as I was going to attend CPAT(firefighter assessment training) Practice. The vision was still affect even after the nap. I got ready anyway. It became apparent while driving that I had a serious problem. The road split in two, the car in front looked as if it was going up hill and downhill at the same time, and oncoming traffic seemed to be coming right at me. I called my wife and said I may have to be picked up because I cannot see! I ended up driving home with one eye closed.
I scheduled an emergency eye appointment at Family Eye Care of Roswell. Dr. Zadeh and his team tested me and fitted me with glasses and a prism. It would attach to my lens and help my eye focus better. This helped for a week. The double vision became worse and my eyelid began to droop. This is when Dr. Zadeh emphasized that there may be a more serious problem and that a neurologist may need to be involved
Over the proceeding days I began to notice the weekend before that my balance was off. I could not walk without holding on to something. The final warning that something was seriously wrong occurred Wednesday April 30th when my arm became weak and had no muscle function. We entered Grady Memorial Hospital that evening and stayed till May 2, 2014. The diagnosis was finally clear. My neurologist confirmed it is the nueromuscular disease Myasthenia Gravis. Learning my limitations would now become my new job.
April 10th is went it all went downhill. I worked in the yard most of the morning as I finally had free time to do so. During the morning I began having difficulty focusing. No big deal. Since the pollen was heavy it had me thinking perhaps it was my contacts. I cleaned them, but no change. I switched them, still no change. I took one lens out and it improved some yet my focus was not good. I finished my work, cleaned up, and sat down to rest and watch TV. All of sudden my one television became TWO televisions! It would happen on and off through the day. I decided to rest up as I was going to attend CPAT(firefighter assessment training) Practice. The vision was still affect even after the nap. I got ready anyway. It became apparent while driving that I had a serious problem. The road split in two, the car in front looked as if it was going up hill and downhill at the same time, and oncoming traffic seemed to be coming right at me. I called my wife and said I may have to be picked up because I cannot see! I ended up driving home with one eye closed.
I scheduled an emergency eye appointment at Family Eye Care of Roswell. Dr. Zadeh and his team tested me and fitted me with glasses and a prism. It would attach to my lens and help my eye focus better. This helped for a week. The double vision became worse and my eyelid began to droop. This is when Dr. Zadeh emphasized that there may be a more serious problem and that a neurologist may need to be involved
Over the proceeding days I began to notice the weekend before that my balance was off. I could not walk without holding on to something. The final warning that something was seriously wrong occurred Wednesday April 30th when my arm became weak and had no muscle function. We entered Grady Memorial Hospital that evening and stayed till May 2, 2014. The diagnosis was finally clear. My neurologist confirmed it is the nueromuscular disease Myasthenia Gravis. Learning my limitations would now become my new job.
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