Monday, January 28, 2013

It begins...

Over time, some symptoms come and go. Untold numbers have not been mentioned here. Something may be here for a one or five days and I never find it significant enough to document here.

Five days ago the dickhead of symptoms is here and hitting me good. Mid-day-mid-week I started having further issues walking. By the next day I have lost nearly all leg function.
My legs are locked up with spasms/spasticity, I can feel the muscles are tight, but the legs are mostly numb (if that adds up). Concrete shoes... Stairs/steps are almost impossible..
Basically existing issues are magnified.
I can only stand on them with aid and I walk by shuffling my feet. I REFUSE to get in that fucking wheelchair...
Being the hard headed prick that I am, has left me determined to not use the chair.
I bought one over a year ago ($5 at Goodwill if I remember right) after I somewhat recovered from an exacerbation and the thought of dragging myself from the bathroom to bedroom again terrified me.

I am shuffling around peg legged leaning on a cane/walking stick with every single step. It is exhausting to get anywhere or do anything.
Getting to the bathroom due to this and urinary incontinence has been an issue. I have nearly pissed myself and had it dribbling down my fucking leg in moments before (additional bummer is not currently having a washing machine and having to wash those piss pants by hand right away)..
My incontinence recently led to an embarrassing argument with the gf where I did not know I missed the toilet in a rage of ripping off pants and trying to aim... I unknowingly missed some and she found it while cleaning.
That is fucking embarrassing, no matter how old you get, what the reason is, or who fucking knows, its fucking embarrassing...

I find myself stationary quite a bit now. Last week I skipped lunch every work day staying in my office and only taking breaks at my desk when I normally take regular stretching breaks and walk around the house/outside.
Everything outside is covered in ice/snow and that makes mobility even harder.

I have another pharma sponsored dinner this week. I will make it to that dinner regardless. I want to meet my new neurologist and hopefully find someone with some cannabis.
I am just about out and really could use some. I will hold back no reservations at this dinner and will ask every person there when the opportunity presents itself. There are over a million motherfuckers in this city.. There are a few colleges here..'Survey says' 14 million Americans use it on a regular basis.. Someone is holding.

I will not live out my life in a wheelchair.
No offense to those in wheelchairs, but I don't wanna be you, I won't be you. You might find some solace in your life, I cant find any on two legs..
I don't have a love in my life or things that I live for. I don't share the same passion for life that you do.
My first thought every morning when the light hits my eyes is not about family or the things I have to be grateful for, its about this fucking disease and doing a self-check to see what could have possibly gone wrong with my shitty fucking body over night... followed by the daily thought... "what's the fucking point?"

Oh yeah, and to everyone who told me since the diagnosis that "it could be worse, you could be in a wheelchair" Fuck you. Fuck everything about you. Fuck.You.


"They even had a priest come and talk to me. He said God is listening and if I found Jesus, I'd get to walk beside him in the kingdom of Heaven. Did you hear what I said?! WALK beside him in the kingdom of Heaven! Well kiss my crippled ass. God is listening? What a crock of shit."


  1. ugh...yr so right as always.
    hope the meeting checks out good.
    hope things are going good otherwise. think about you often.

  2. It breaks my heart to read!
    Hope you will find some help and medicine very soon!!
    Thinking of you.

  3. What if you call your new doctor! Explain everything! You can`t wait till late April! He must have time to see you.

    1. I did call the doctor's office and ask what someone in my situation should do. And they simply said talk to him at the dinner or go to hospital. I am not a patient of his yet. This would different after I see him once.

    2. Sounds very strange that you can`t get an appointment earlier!
      I guess you don`t plan on going to hospital. Even though you probable should...?
      Then you just have to stay strong and wait. And make the best of the situation. Eat well. Or at least often.
      I hope you get to talk to your doctor this week! Maybe you already have?
      Take care! As much as you can.
      Even though it doesn`t matter, even though it can`t been seen or felt in any way, I care about you a lot!!

  4. I really wish I knew you in real life. Not just through your posts. I cant express that enough.
    Hope the symptoms lessen for you soon. Eat lunch. Get her to bring it to you for Christs sake.

    1. Skipping lunch is part not wanting to move, but mostly not having an appetite. I like one meal a day and the rest I force into myself if I have it. Dont snack. Don't get the 'munchies' (which has led to some light harassment with other smokers)

      She offers me lunch anytime she is here.

    2. Good. At least she offers. I have learned recently that eating when you feel shitty is sort of a chore. Especially when your stomach is in your throat from nerves.

      Hope today is better for you.