Sunday, June 16, 2013

So it is...

Each exacerbation takes a piece of me away that I never get back. A body that was once unstoppable, unshaken and ready for the world is ravaged by this disease and left deteriorating without grace.

It's difficult for me to argue that I have not given up since I really don't feel as that I have. But in the eyes of a normal, healthy person I cannot do enough. They make it sound so easy. Just do this and just do that.
They don't understand that walks across the house are marathons anymore. How working makes me feel mentally incompetent any more. Heat outdoors keeps me imprisoned. Spasticity and the related pain refuse to allow a decent rest.
When I am alone, some meals are skipped because of the effort and appetite involved, for I have trouble with both.

Sometimes I wonder if I am being punished for not following my heart as a teenager. Before my Dad had a stroke (leading to me dropping out of school to help the family), I had dreams of seeing this world. I wanted to live a free nomadic life, flowing and changing course with the wind. Chase the seasons and get chased by them. To hitch hike, train jump, bum my way to and from. To meet people and make an adventure of life.
But I fucked up. I got on the fucking wheel. I got on the fucking wheel like a fucking rat and never got off.
I could have jumped earlier but I felt like I would be abandoning my family.
I was watching the ground building the courage to jump, and then...
I jumped, and missed my mark. I waited too fucking long and it found me.....
MS kicked the door down and fucked me. This sorry piece of shit has not left since. It lurks around, randomly pulling me down and fucking me. It'll fuck me anytime it wants it. Anytime it feels like I may be getting my hopes up for a change, it fucks and it fucks. It's fucking relentless..

Its making me a little jealous and bitter. Somewhere, someone is living my life. They have the wind in their face with fresh air in their lungs. Wonders in their dreams and life in their eyes. An uncontrollable smile and laughter that can be heard a mile away.

I find myself in a similar conundrum. At a crossroads, I don't want to abandon my family but I am tempted to follow my own lead and not miss this time.
The suffering has turned me into an old man only waiting for the fucking to be over.

Monday, June 3, 2013

Update 6/3

Dropped Zoloft after two weeks. Caused bowel, bladder and sexual dysfunction.
Already elaborated on the issues. Took a few days after stopping for things to return to 'normal'.
I will refuse any antidepressants from here on since they all carry some fucked up side effect. Every one of them have caused one issue or another. My body/mind do not interact well with those types of drugs.

I have just over a full week on Ticfidera/BG-12. So far so good. Only slight flushing and stomach issues.
My doctor started me on his own titration schedule. Two weeks 120mg once a day. Two weeks 120mg twice a day. Then the normal 240mg twice a day. The official schedule is 120mg twice a day for seven days then bumped to 240mg twice a day.
Time will tell if this can stop the progression.

Two weeks now after Acthar and no improvement in my blurry eye.
Reported it to my doctor and that was the last thing we could try. We simply have to wait this one out and hope the inflammation goes away sooner than later. My first bout with Optic-neuritis lasted over 5 months and eventually cleared up on its own.

Still very depressed. Hating life, work, ms, etc...Wasting away, really need a change.
I think a dog is due. The timing has never seemed right and bullshit continues to happen that eats away extra funds, but that's the way its always been and I always sustain.
Its been about 18 months since she died, I miss her.