I am learning how to live a new life... accepting that this is how it is and what am I going to do about it.
I had a visit with a Dr. and he said you must feel like the medical profession has let Storm and you down...
Storm was diagnosed: Progressiove to terminal with no treatment or cure. Thank God for his cannabis which keeps him active, functioning and enjoying life to the fullest while living with chronic pain.
Now, the only suggestion I get is for medications. Which I am not o.k. with. Particularly seizure medication. Have you read the side effects? They are not confirming it IS seizures - so NO. That being said, Botox is worn off I believe and I am living a different life.
One that I don't have so much control over. Somedays I am up at 4, waken up by my twitch so powerful I swear I feel my head rocking on the pillow - those days I pretty much write off. I do what ever I can when I can.
I am THRILLED and thank God and the surgeon every day - I don't seem to be having the doozies - well a couple, BUT not nearly as often or as powerful. The problem is the twitch (which again has been explained it is not a twitch pulling, but electrical impulses going off) it pretty much NON stop all day all the time with breaks in between of only minutes. It is exhausting. By 5 p.m. I hardly want to do anything. My head pounding from constant movement as the night wears on I look forward to going to bed. Daily naps at about 2 are also NEEDED - I'm not fond of napping. I am looking forward to the puppy! It plays for about 20 mins. and then needs to sleep. I have the dogs trained when I nap - so do they.
Or else I'd get no rest. I think they look forward to it now as much as I do. LOL
He (dr.) also asked are you depressed?
I thought about it for a second (I have been depressed before) and replied
"no, not depressed... completely fucking overwhelmed at times, yes."
He understood that.
So with deciding no surgery- no medicine they don't really know what else to do.
I'm o.k. with that. I need a break from all of it. That being said I never really do get a break. I am constantly reminded with each interruption, some painful and always annoying, that this is how it is. Like it or not.
The twitch triggered by talking. I swear on a bad day it is triggered by breathing.
So I noticed as have my family I am getting quiet. I find it ironic that my phone has not been working and decided not to care too much. Less triggers. If anyone really wants to get a hold of me they know to e mail. I am doing much thinking, of course, especially with the approaching changes and much drawing but I am TAKING it easy.
The awesome thing about the twitch...
My appreciation, realization and determination to enjoy every day I am blessed with.
I would not say the medical profession has let us down. Stuff happens.
They tried and continue to try. I have been blessed with awesome Dr.s, all of them.
But at some point you just have to step back and say... It is what it is.