The crap I write. Still don’t know what to call this. (I think that’s the new name)
It’s early, only 9:30pm… well late for some. Not late for me but I’m beat. Insert some crass quote from my father 🧡 He never really gave a fuck what others thought, I always enjoyed his humor. That’s probably why I’m so twisted. Love ya dad. Miss ya mom. Ok on with this…
Day started rough, feel better, still a heavy heavy weight on my tight chest. It’s not getting lighter but I’m learning to breath a little. It’s difficult but I’m doing the best I can. Let’s take a moment… look I know negative won’t get my anywhere. It does no good and it’s a waste of time. I know I need to suck it up and I will. I’ll also break from time to time. I know you think you understand but the thing my disease is known for “shaking” is the least of the problems we have. If you don’t believe me join a few Parkinson’s groups on Facebook and read for awhile. Even a “manly man” would be on the verge of or in tears. What’s happening to me mentally and physically isn’t something that’s simple in any way to control or treat. I’m only a couple years into the harshness of what Parkinson’s is and when it hit me, it hit fast and hard. I talk about all the other things but let’s talk about my body. By the time I was diagnosed I couldn’t control my emotions, my right side was almost completely rigid and I could barely function as a human on my own. Yes I’ve gotten better but not to where I need to be. That won’t come until I get a proper income, proper support and most importantly learn more about living with my disease. I’m not near far enough into this, I’ll never be back to 100% and I will only degrade from here. So the goal is to get the support system setup so I can learn to live with my disease and then try to find a decent quality of life while making and income. That’s a mouth full and I’m far from that goal but I will get there… and I will break from time to time. That’s just how I work. Maybe not you but you are you and I am I… that what’s makes us special.
I started off the day with creating a design that sort of encompassed my feelings hoping that would get some of the frustration and anxiety out. It did while I was creating so that was good enough.
Then… I met with a nurse today that comes where you live and does a number of things. I don’t exactly know what all those are yet but it was a long and great talk. She had a lot of energy, found out she was only 7 days younger than me and she was extremely nice. I think she’s arranging OT for me, if you don’t know what that is, neither do I exactly but I’ll let you know when I find out. I have an idea of course, you can Google it for f’s sake. I mean exactly what they do. She said there were a number of things we may be able to figure out. It’s late, it was a long day, My memory is lacking at this point. She sent me an email with other things I’ll discuss later after I follow up tomorrow. So all in all that was purty darn great and did raise my spirits a bit. I guess she comes out weekly or on a regular basis provided by my insurance. Love how the state will pay hundreds of thousands and give me free insurance with no co pays but deny my disability. Goodness.
The remainder of the day was mostly a blur. I sold a few things. Attempted to watch some tv but mostly slept. Oh, went to the hospital so they could suck like HALF my damn blood out… WTF lady. Have an IN office visit on Monday with the GP. That’s kind of a treat. It’s been phone visits for what now seems like eternity. I’m so tired of being stuck in the damn box… Ummmm other then that I actually had a cheeseburger and fries for dinner. That’s really a treat these days. Friends that buy dinner are the best! Was heading to bed… that was an hour ago but decided I should post before I go to sleep. I was tired but I’m less tired. Let’s hope insomnia just takes the night off. I could use a good nights sleep.
If you have some pocket change, I have a fund raiser running here on Facebook. I’ll have a Kickstarter here soon for some fun stuff to raise more funds. I’ll be able to reach a wider crowd and offer some fun products for everyone while supporting a good cause. I’m trying my best to work on more good things.
With that I need to call it a night. My eyes are barely open yet I’m wide awake inside. What a feeling. Time to go try to sleep. Much love all and be safe out there. If something doesn’t make sense I’ll read this in the morning and fix any error… 🥴
#parkinsonsdisease