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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.