My 7 year old read me a book today about lungs.

[bmartinez]

I know we all say 'why me' but I this just boggles my mind. I was literally 'just a guy' on the internet when the Ice Bucket Challenge first started. I learned a little bit about ALS, thought "wow what an awful thing" and went about my life like everyone else. Then the symptoms began...From the first twitch, I was worried SICK. I look back at my mental state in the beginning and think "what the hell was I worried about". Because then, twitching was NOTHING TO BE WORRIED ABOUT. Then the hand weakness....."oh that must be carpal tunnel". Fair enough..."ughhh I couldn't really breathe well last night huh...must be the elevation" (was camping). Then I can't breathe laying down at home.."huh must be my weight".

So many excuses I gave myself. "The twitching is only in my legs....must be BFS"

I MEAN COME ON!

I'm only 27 years old! I'm a single father with no help. This can't be my fate?!?!?!?

I'm the most fearful person on the planet, always been. Afraid of my own shadow...the type of person who obsesses on little things: Little ticks in my body, the color of my poop, A hypochondriac by nature.

Now as the disease progresses, I get more frightened. It's already began in my lungs. I don't have much time left. My left phrenal nerve is 100% paralyzed. The right nerve is beginning to go. I still have to wait for approval for breathing assistance. My lungs could be gone before I get that approval.

My house is a mess, and I don't have the energy to clean it. My daughter is going to come home from school and find me dead. My family is mostly defunked. I might be able to get a couple of them to visit me but they will still try to argue with a dying man.

I had so many plans. So many things that needed to be done so that I could provide an adequate life for my daughter. I put my life savings into saving my daughter from her abusive violent other parent which left me dependant on welfare. I had plans how to break out of the poverty level by writing software. So I read 100's of books on software development and was almost finished with my dream web application.

I MEAN COME ON GOD!

Why could you do this to me?!

There's nothing anyone can for me or anyone with this disease. No hope for treatment because I have the worst possible onset (lung). I'm going to die before any of my limbs are atrophied. Sleeping at night is 20 nightmares of being suffocated.

I don't know what is on the other side. I was an athiest, but now I can't stomach that belief knowing i'm dying. I pray to god but it's as if he has casted me away.

But since sleeping has become so difficult, somehow a voice has appeared from the background of my mind, and in the softest way (like a mother) he tells me "go to sleep baby boy, everything is going to be all right" and I listen.


WE ARE ALL CURSED! WHAT AWFUL LOTTERY DID WE ALL WIN? THE OPPORTUNITY TO BE ALIVE FOR A FLASH OF TIME AND FOR THAT TIME TO END ABRUPTLY IN A HORRIBLE MANNER.

God help me i'm losing it..

 

[skipper66]

I know that you are on a tight budget. But, there should be some type of facility in your town that will provide with free counseling. I would check with your primary physician if you have one or maybe even the health department in your area. I think you need a professional to help you deal with some of your issues. I feel from what you write that you need some help a.s.a.p. I would get off of computer for a little while and make those calls now. The sooner you get some support the better. Do this for yourself and your kids. We will support you as best when can on here but I feel you need somebody closer to you as well. Any close friends or relatives you trust?