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."
Monday, January 21, 2013
She got back this week after being gone almost a month waiting for my car to get fixed.
She had a rough time up there. Between dealing with her own family to getting the flu and then scratching her cornea as she's getting close to returning, she was defiantly home sick.
Right after she returned a massive snow storm hit our region knocking out power for just shy of 48 hours.
Got snowed in for a couple days and luckily we had food from shopping earlier in the week and had plenty of firewood.
The firewood was a triumph for me on a couple levels.
The area where the firewood is stored had once held an above ground pool. The pool is gone but left was layers of some nasty shit. A waterlogged moldy carpet foam/insulation shit was the first layer. Became an ice rink when it froze.
Took three days to remove the shit and expose the nice rock underneath. It beat me up and I paid the price but its done and looks much nicer. Its safer to access and I don't have to worry about the firewood sitting on top of the mold.
I cannot type this without grinning... the day before the storm the girlfriend and I got into a drawn out argument about priorities and she thought the work I put into the firewood area was a waste of time/energy and that the money spent on the firewood was a waste, as we have electric heat.
Obviously that sentiment came up when we were huddled in front of the fireplace for our only heat.
Since I have been getting worse I decided that I would give Tysabri a shot. I had already started the process last year to begin treatments but since I was told we had to move that was put on hold. Enough time had passed that Tysabri said the paperwork process would have to start over.
I did not want to get my old doctor involved again. I had already milked them for free care over the phone since I had seen him last February. He was nice enough to call back if I reported an issue and prescribe steroids or other meds if needed.
I will have to wait until I see the new MS specialist in late April.
I have a pharma sponsored MS dinner coming up and the doctor I have an appointment with will be there. I am looking forward to meeting him, I went to one of these dinners last month and he was scheduled but could not make it. I may make mention that I have an appointment, currently taking no DMD, and the attempt to start Tysabri here. Maybe he will try to fit me in somewhere, but I doubt it.
Getting the hug a lot lately. That causes me to double over kicking off lhermittes. Not happy.
Tuesday, January 1, 2013
Its time to grow up and fucking get over it. I know this. I want this. Fucking anger just festers.
A whore showed up in my life on this day a couple years ago bringing a whole sack of MS with her.
Obviously I do not blame her for me actually having MS, but I am confident it would have not taken me down like it did, and not as soon as it did if it were not for her. I don't care if I am wrong.
The fact does remain that the way life has played out since has left me the way I am today as a whole, and I fucking hate it.
I only ask for a few more fucking years!!
We have not kissed in two years. I love you has not been said in two years.
Two years ago, I kissed her goodbye, and told her I loved her as she left for work. Found out that evening she was not being faithful and we simply never kissed or loved again.
I cannot even say to myself that I love her. I don't know that I do. I have already spent a week away from her and it may be another two weeks before I see her again due to the car accident.
She is wanting to be home, and I guess that she misses me. My delusional mind says she is worried I will realize that I don't want or need her.
I have immensely enjoyed the peace and quiet since no one is here.
Saying this out loud sounds like shit; I enjoy her cooking, her cleaning and she feels better than my hand. Surely it hasn't come to that. That has to me being an asshole.
I am aware enough to recognize how abnormal and unhealthy that relationship is. It's almost as if the part of me that should be handling that died. I simply walk around in confusion, a basic carbon matter with no ability to make a decision.
I truly feel like a part of me is missing. I am not who I was.
A lesion must be on a very important part of my brain. A part that was critical to me.
A sorry ass shell of the former. Head hangs low when it was in the clouds.
Grow up and make a decision you dick, accept the regret however it plays out.