CHECK OUT MY NEW T SHIRT CAMPAIGN!

ONE MORE SHOT t shirt campaign!

Monday Monday!

A few short months ago I would be awaken on a Monday morning by my alarm, have breakfast and be heading to work right now. This Monday morning its different.  Now its doctor appointments and medication. As I write this I am going to an emergency followup appointment because I spent the weekend working hard to breathe.  My body is feeling the weakest it has been since the hospital stay in August. This is part of the battle I will have to wage from now on. Now that I know how to read the signs of depletion I am able alert my doctor before things get to bad.
My mind is in a whirlwind. I am angry,  sad, frustrated, scared, and miserable wrapped up all into one body that I do not understand anymore.  Here I go again back to the same questions, "Why has it betrayed me?", "What did I do wrong?" , "When will this end?" Its the same kick in the stomach over and over again! Not to mention the continuous flow of bills and phone calls for money that isn't there. In the meantime the assistance I need drags further and further from reality. Why do people who need help have to fight so much? Over and over! It adds to the misery because you know full well that the person you call to assist you is going to give you the same canned answer from last week.

I WANT TO SCREAM OUT, but even that could affect me the wrong way. I'm being serious too. See, I told you this disease stinks.

Well I got the anger out! The frustration remains. I guess thats normal right? The doctor is very comforting.  He is willing to do whatever we need to keep me from going downhill. That makes me feel better. He doesn't take my concerns lightly.

I have comfort from my close family and friends.  I would love even more interaction with everyone because I found out that I may have to limit myself more due to the breathing problems I already had. The MG aggravates it more.  So once more I have learned that I must take it slower still. Hmmmm ok.

My faith strengthns continually. Keeping the spiritual routine active has been a life saver. Other forms of entertainment like television, games, and movies get boring. They have no lasting value. When I listen to God's word that is when it all becomes clearer. I still have the emotions but at least it gives comfort that I am not alone. He is always watching for ways to show his power in our behalf.  He hears my cries both inner and outward. Life will be tough but he promises that it will not be like this forever. That is what my family, friends,  and l are looking forward too. 

In the meantime I wait and write. It has become a therapy for me. Getting the inner voice to the outside is hard at times. When I put pen to paper I can hear my thoughts clearly. It has become a way of keeping myself from building up the regret and anger that damaged me for so many years before. My hope is that others who are dealing with trials may be encouraged to voice their feelings too or at least see how nuts I am. HAHA!

The day continues. I go to rest now. These feelings will still be here just lessened now. I pray, relax, and put it in my heavenly father's hands.  This is the best rest ever.

Tired

I am tired of fighting. Tired of fighting to be normal. Tired of fighting to be understood.  Tired of fighting for help. Tired of fighting this disease.
Everyday I have to figure out how I am going to get through the day. My mind wants to go one way and my body is going in another. I feel like a prisoner. Trapped with nowhere to go. No transportation,  no money to do even the most minor things because I can't work, having to wait for someone before I can do anything.  All of these things are weighing on me heavily. Now I am fighting myself.
The feeling of loneliness envelops me often. I am emotionally wrecked on the inside. Who does one talk to when you have something no one understands? People look at me like why does he have that walker? "You're too young for this" Or they say things like, "I should have that, not you". That doesn't make me feel better, only guilty.
I can't control what is going no matter how hard I try. Its not my fault. Who wants to pretend to have something like this!
Some look down on you. Talking over me, downplaying how I feel, not listening to me. As is to say "who cares what he has to say, he can't do anything. " Lashing out at me when the fault is clearly not mine. I reckon this just makes me an easy target.  Wow, I guess I never saw that coming.
This isn't to make anyone feel guilty but my thoughts are what they are. Holding it in hurts too much.
I want to be myself again. I wish things were different. Trying to figure it all out has been more difficult than I thought. Somedays I have it most days i am so conflicted it feels like  I am in someone's nightmare. I can't do anything right not even for my own self. Where did it ll go wrong is usually the question of the day.
My body has changed, my face swollen by medication,  my chemistry is off, everything is just wrong.
I know I will get through it. I just don't want to do it alone. My motivation is somewhat clear. There are things I want to accomplish.  I will figure it out. They will be accomplished.  Obstacles have been overcome before and will be overcome again. Determination....that is what is needed now. It will come back to me. When it does, then I will move to the next step like I always have. 
These feelings will never leave me, but I am ready to handle them as they occur. I'm not afraid to tell what I feel because someone else is feeling the same way but may not be able to express it. 
Tomorrow will bring another battle I know. I will be ready.

Taking New Steps

Well its been a while since I have expressed my thoughts here.  There has been much happening in the past few months.  The disease progressed faster than anyone expected. Eventually it took over my entire body turning me into a non functioning vegetable. It got so bad that my wife was picking me, a 225 man, up out of the shower and off the floor regularly. It became to dangerous for me to be at home alone. I couldn't take care of myself anymore. On August 8, 2014, at 2:30am it all went wrong. My body shutdown and went into a Myasthenia Gravis crisis. Full respiratory shutdown. I couldn't breathe on my own anymore. I spent three weeks in Kennestone Hospital. Two weeks in ICU on a ventilator, and eventually another week weaning off of it with a tracheotomy. The doctors and nurses were great. They really did all they could to bring me back. This included 8 plasmapheresis treatments, physical therapy, and skilled doctors expert in the care of those with Myasthenia Gravis. My primary Dr. Marat Reyzelman is an incredible neurologist and I am happy that he was there to take care of me.

Well that brings us up to now. It has been about 2 months back home and recovery is steady. The first weeks were very difficult mentally, emotionally, and physically. My wonderful wife, family, and friends got me through. I needed to learn that my new normal is not a bad thing. It is going to be who I am for  while and that is okay. Take it one day at a time. My occupational and physical therapists were crucial in training me how to conserve energy, and think with a different mindset when it comes to exercise. They were very proud of the progress I have made. The goal was to make sure that I will be safe at home and can handle my activities of daily living. I am proud of myself too!

There are going to be some tough days mixed in with the good, I know that now. The journey is going to be a long one.  Projects like this and others that I am involving myself with, help me stay positive. My goal has become to help inspire through me experiences. My fiends have inspired me so I have the responsibility to do the same now. My faith keeps me strongest of all. In my darkest days in the hospital God's promise to never abandon me were always in my mind and heart. How can you get through trials without faith? It's impossible. There must be a driving force in our lives. Each night my prayer was always for my wife's strength and endurance, for my family and friends to be safe while traveling to visit us, and for the doctors and nurses who tirelessly worked to keep me comfortable and alive. I had faith that all of these things would be taken care of and they were.

My days now are not what they used to be. The hustle to make it to the office, staring at a computer screen all day, listening to arguments and debates, wondering if I am going to get laid off again. Now I fill my day with happy thoughts of recovery. I am constantly thinking of new projects to work on or ways to make life a little easier. Its fun. Being at home is not boring to me anymore because now my mind is occupied with something better than fear. There is hope. The people i speak with in the MG support groups are a good source of encouragement that there is a way to live and thrive with this disease. I plan to overcome my limitations to the best of m ability, and whatever I can't do I know I have a wonderful supporting cast behind me!

Life is good! I am going to enjoy everything that much more. I am alive, I am happy!

Go see my other Facebook page, One More Shot.
www.facebook.com/OvercomingLimitations

New Facebook Page

This page is another project I have been thinking of for a while and just took a chance and did it. I started it to give myself and others a way to show how we overcome limitations to be where we love-the great outdoors. Sometime we just need that opportunty, one more shot at feeling normal. Doing what we love-hunting, fishing, hiking, camping or just simply sitting outside enjoying the autumn air on the porch.

My illness has sidelined me to a great degree but I determined to still enjoy the outdoors!
How do you overcome your health limitations to do and be where you love?
The season is here. Its time to have fun, fill tags, and freezers. Share your adventure and lets inspire others who may be hesitant to get back outside and enjoy this beautiful place we call home! I hope we can make this amazing!

Here is the link:

www.facebook.com/OvercomingLimitations

No Kind of Life

This is no kind of life. I am breaking down. The reality is that I am NOT getting better. All of the independent functions that I use to be able to do I can no longer do. I can't bathe myself, I can't feed myself, I can barely talk longer than a few minutes, if I walk more than two or three feet I feel as if I'm going to give out and I usually do. I am keeping hope alive but my sadness is ever present. I have felt that I have had to remain strong for the sake of others around me but I can no longer do it.  This is really starting to wear on me mentally and emotionally. I am determined not to let it break me but it is definitely taking its toll.

There are days I wish not to wake up. Not because I want to die but because I wish I was still asleep and all of this mess was only a nightmare. Its not though, it's my life. Why did it have to be like this? This morning a simple cup of water was too heavy to carry. My arms feel as if someone has tied them tight to my sides and dared me to go about doing things. My hands feel as if they have been taped together into fist so that I have no use of my fingers and no dexterity, my neck muscles have weakened so much that I cannot even hold my head up straight to open my mouth and eat. Frustration wraps me like a blanket so tight each and every day. I am leveled by it each morning when I awake and try to get out of the bed. Even this has become very very difficult.

I don't know how much longer this will go on but I'm only human and I don't know how much more I can take. This is not life. The only thing that keeps me going is the hope my Heavenly Father that soon will not have to put up with these ailments anymore. He has given me a wonderful support system that I hope continues with me for however long this lasts.

Don't Be Afraid

There was something on my mind before I went to sleep last night. It is still on mind this morning. I have extremely wonderful family and friends that have been of great comfort to us both. Yet I noticed something. Sometimes I notice someone reassuring me but at the same time I notice it being done because they think I am afraid or scared. No doubt I am so thankful for these kind words because they really lift me up. Still I don't want anyone to think I am afraid or in fear of this disease. True it is worrisome but I am not scared of what the outcome could be.

What is the outcome? I may never get better, even death. Accepting this has helped me get my mind ready. This disease is not an easy one. It takes its toll fast and the results are often times long lasting. Only a small percentage actually go into remission. True, I am hopeful but I am also not in denial. I try to always be positive. What helps me accomplish that is allowing myself to not look to far ahead just yet. Instead I cherish my small victories.

I know the reality of disease because I witnessed it with my mom. She never got her hopes up but she never lost hope either. Medicine and science can only do so much. I won't spend my time chasing this and that, I will do what I can. In my mind that will take away from me enjoying what I do have right now...my life, family, and friends. Being sick is obviously not the way I want to live. I know its not the way my wife or others want to see me live. I had big plans for the future when I was well. Its ok though. My spirit is at peace.

Cheer me on, stay in my corner, but do not be afraid for me. Help me live the best life I can. No one knows what tomorrow will bring. Will I get worse? It is highly likely. Will I get better? I am hopeful. Still I am glad to be here. This is my opportunity to educate and possibly help others who are dealing with an invisible illness. This disease will surely slow me down. It won't allow me to do what I used to but it won't stop me from being me. I am sick but I am still Jesse Benjamin...Jay...Jay Jay...Jay Bird! Whichever I am known by just know I have a lot of life, love, and laughter left in me.

My worst fear

I am not afraid of much. Not man, not even death. What I fear most is being unwanted. Will I lose my friends because of this disease? There are stories of folks with MG and diseases like mine that were abandoned because they couldn't get around like they used to. Is this going to happen to me. It is a real fear because it does happen. I am no different than anyone else, or am I?

Once, I could do anything. Now i can't. Before all of this I would go anywhere at any time. Not now. It stinks. I have to turn down invitations or break plans because of being to weak to safely get around. Will the invitations dry up? Will everyone automatically assume that I can't and cut us off? I am literally afraid of this. Will I be left at home alone because people fear that I may talk about being sick or that I am not any fun to be around?

I am still Jay, I'm just sick. My personality did not weaken only my body. My goal each day is to be positive but I am human. Doubt and fear cloud my mind constantly. Am I a terrible person for feeling this way? Maybe I am guilty of making someone feel this way in the past! That scares me. We have always worked hard to include as many as we can in our events. Perhaps I forgot someone. I hope I can make it up to them.

Maybe this is one of those downer days. My soul hurts. I don't feel sorry for myself I just feel numb. Why me? Can't anything ever go my way for once? Why must I keep getting knocked down and kicked when I am? Maybe its because I keep getting back up each time. Should I stay down this time? NO I CANNOT DO THAT! It could be that my job is to experience painful situations, make it through, then be able to help others. I wish I knew. My heavenly father promises he will not let us be tested more than we can bear. I believe it. I can bear this even though some days the weight is very heavy. I am very thankful for those who have helped us bear it.  I am grateful for the cards, calls, messages, visits, and loving deeds in our behalf. It is overwhelming and brings me to tears.

My heart is a little more calm now. I know this angst will arise again but I will always reflect on the love I feel from my friends everyday!

Are we really what we eat?

I used to hear that a lot growing up. "You are what you eat!" At one point I actually believed it. I love chicken so much I thought perhaps I would grow feathers and start laying eggs, which would be really weird considering the fact that I love eggs too. One day I just had to ask my mom why people say that. Well one reason was to keep us kids from eating too much candy, the other was because eating what is healthy will keep you healthy and eating  too much of the unhealthy things will make you unhealthy.Simple enough. Oops let me hide the chocolate bar! She had a good point too. I have seen people drink themselves to death due to alcoholism, develop high BP because of eating to much fats and the like, and the pains of diabetes because of diets high in sugar. I have also seen and experienced the good effects from eating a healthy diet.

We live in a society now where the new catch word is organic, non GMO, free range, and the list goes on and on. For good reason we need better food. You look on the back of a box and you can't even recognize the words in the list of ingredients.  Even the stuff that claims fat free or low sodium, substitutes what is supposedly bad with another ingredient that is manufactured. Headlines in papers, "EVERYTHING IS BAD FOR YOU". I had never even head the word organic until I moved away from home. We raised our own chickens for eggs and grew vegetables. What we didn't raise was bought from farmers markets or The Mater Man! Organic stuff was the cow manure that fertilized our gardens! Still we never claimed that put us on any higher level than the kid who ate hot dogs and french fries everyday and sat in the house playing video games. It goes back to my original thought, are we what we eat?

That apparently unhealthy eating kid, grew up with the same habits and has never been sick. Yet the kid who ate healthy and still does as an adult gets sick.. Does being ill automatically mean that you don't eat well?  Does is mean that you didn't eat enough organic or non GMO and so on? Or, that starting now will some how cure you? Its an observation I have made because even before my illness I made great changes to be as healthy as I could be, Junk food and sodas were the first to go. I love ice cream, but I can literally count on both hands, and maybe a few toes, how many times I have eaten it over the past 3-4 years. That was my biggest hurdle. I stopped drinking sodas which i never did much of in the first.  I love to cook anyway so we starting doing that more instead of going out. We never did that much either because its too expensive and I cook way better. I always eat fruits and veggies despite the belief otherwise. I simply added more to my diet. My meals were more balanced and I felt good. The excess weight fell off. To date I have lost 40 pounds and it has stayed off. I increased my activity over the past 2 years in preparation to become a fireman. You can't be an unhealthy recruit. I honed my body into a fine tuned machine. I was the fittest I had been since my twenties. As of June 1, 2014 I have an illness that came out of nowhere. What happened?

Who knows? Does anyone but our heavenly father? No. It just bothered me that as soon as one becomes ill the first hing that happens is folks want to throw everything out of the house. You didn't eat enough of this, or do enough of that. Take this, read these, go here, do that. Could it be that it was going to happen despite the best efforts to do everything right? All of the advice is great because sometimes when one becomes ill, it is good to have that second set of eyes to help him/her. Change is good when it helps overcome illness or cope with it. On the other hand how much of the advice is actually practiced. I have preached advice that I know I did not practice before. I think about that a lot. We have to be careful not to do this. Never make someone feel that their illness is result of not doing something right. The feeling of guilt is already there. We don't always have to figure out a solution. Lets just care for each other. Listen closely, observe, then help. What one needs may not be another thing to read but to know you will always be there. Have fun, laughter is the best medicine. Good company revitalizes. Love is food for the soul. To me this is the only organic thing on this earth.

Love, now I can never get enough of that!

The Emotional Rollercoaster

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.

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!

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.