April 4th I check in at the imaging department at OHSU. On the 5th I rest and finish any and all last minute life stuff. The next day on the 6th of April I have my official surgery. I stay in the hospital overnight, then assuming all goes well a few days later they insert my power pack, then 2-3 weeks later I get plugged in and tuned up. They’ve provided 3 days worth of housing free of charged which is a blessing indeed . Unfortunately the who process is two surgeries and a recommended 30 day healing and stabilization period. These donations will go directly to the lodging and direct care that OHSU and insurance doesn’t cover. Any and all donations are impactful and I can’t express my gratitude and thanks for all of you. Please share the link even if you can’t help monitarily . All things done with love and light will be successful. Always and with some luck, science and faith I’ll see you all on the other side of this. If not please remember to always be brave be bold and thrive in the life you have.
609pm pst and I’m lost in thoughts. I have been all day. With the tragic and sudden end to my attempt at a better life just recently. Then coming home to a house being sold. A 60 notice to move, a law battle to regain my rightfully paid for and earned Cigna disability income. A battle to retrieve my personal,medical and legal items from Arizona plus move hereove to a new house in Salem is rediculous and I’ve almost had enough. It’s much for one person to bare. My son and daughter have forgotten about me and really I’m over it. Everytime I try and fix this broken thing that is me I end up making things worse. Seriously right now is beyond me, beyond anything I know how to cope with.
I’m grateful for my beating heart I have but right now on this day at this time I am miserable. Why can’t I simply put myself in an environment where I can paint and write in peace?!
Either I become involved with my caregivers or I’ve a family member and that’s not a fair burden to put on A person who isn’t a true employee. There is to much family and not enough business of health care. Often in those cases or to easily one party can feel used or unappreciated over time.
At this point I’ve given up on love. This last experience was exactly, literally my largest fear as a disabled Adult realized. Even as a grown man I can not tell you how terrifying it was to find myself away from everything I know in the hands a person I thought knew but entrusted my life and well-being to have that person turn against me and force me into a homeless shelter with no notice or justified provication.
I don’t know, wtf I’m doing. I’m fucking still having flashbacks backs of that day and night in the shelter, then the 4 days of travel. Me, my leg brace,knee brace, cane 2,boxes and 2 bags and no help. No caregiver no friends or friendly faces. Pill schedule, diet and life thrown to the wolves like some disposable cup or common piece of litter.
Now just for my sanities sake I sit here and write it out, try and replay the day , weeks, years of the last few and find where Ive gone wrong. I’m I forever lost with disease of Parkisons, never again to be able to decern the right choice from the wrong choice. I’m simply to tired and work to go on losing. I can’t, don’t have the strength of soul anymore. I don’t have the physical strength or endurance of a young man anymore. I have the body and mind of a man who barely escaped cancer, isn’t nearly done with recovery from that and has been actively taking medication for Parkisons disease for 8 years.!!
All of this shit hitting me at once has me freaking done. I’m numb, I don’t know what door to choose and I’m not sure anyone can make that choice for me, but I’ve obviously proven time and time again over the last 5 years I can’t fucking make a sound choice to Save my life. Half my family and most of my friends have left my side specifically b cause of what Parkisons disease has done to my brains and emotional functions. Chemotherapy and radiation treatment didn’t help any especially straight to my head.
Honestly I’m not sure what to do with myself anymore. Sad to watch what I thought was a fairly successful life go so far wrong so far from what the center was. I try daily to just look at the bright side of life, I try every day to stay calm and loving. The kind of person who is compassionate and understanding, but I don’t know what goes wrong. It’s to hard on people when they can’t understand that a PWP often can’t hear their tone, nor came we normal autonomic controls over our diaphragm or esophagus muscles, mine even worse because of throat cancer treatment. Sorry I lost track, another thing that drives me nuts about Parkisons disease, focus… I have none, zip, zero, nada. I can’t even tell you how long it’s taken me just to write a few scattered paragraphs on a subject that it so near and dear to me.
Anyhow, I’m tired, I’m sick, I’m fearful of the future and honestly I’m tired of being used by other people. Always for their gain. People who force me into “Normal” situations knowing full well that I’m incapable of making clear and present good healthy choices and then get upset when I don’t react as expected… No shit people I have fucking advanced Parkinson’s Disease.. Sorry last minute vent.
I hope your life has been kinder than mine and if it’s not I pray that your will be.