Am I alive? Well no, or not really fully alive, since I’m marked as Palliative but not 'the last three weeks' Pallative, or so they are guessing, based on not knowing the disease. That means I don't have to move into the hospice.
I had to drag myself out of the bed yesterday as the worker wouldn’t come, not to calls or bell ringing. I could hear her on the phone. She had ignored everything on the note, and when I asked her phone Beacon, the care agency for me, she said, no, and “you don’t take that tone with me. Once you change your attitude..”
I pulled myself off the floor using the kitchen jam. “Do NOT blackmail someone in their own home. Just now you were on the phone with Beacon….call them again!” and I fell to the floor.
“Move away, you're blocking the door.”
“I can’t” I told her between breaths, “I’m on the floor, assist or call Beacon.”
She tried our phone, then started slamming it against the counter “JESUS CHRIST! …ohhh" the worker growled, "that she would say that to me….then blocks…..ahhh!” (she didn’t know how to turn off the phone so this actually ended up on Linda’s messages.
She got Beacon and told them I had threatened her and then put all the locks on the door (it was still unlocked). I was still curled by the door in panties as I hadn’t had care to dress, food or drink. It is becoming a rather odd and similar experience to end up that way after ‘care’ from a Beacon worker.
I finally got to talk to the RN. “Hello, is this Elizabeth?”
I said, “This is Dr. Elizabeth McClung.”
There was a long pause and then, “Can I please speak to the client.”
“This is Dr. Elizabeth McClung”
With a question in her voice she asked, “Are you receiving care?”
“No. That’s what I wanted to speak to you about.”
Another 30 minutes and another RN later with me in panties and nothing else and the worker standing in the hall with the door fully open.
“No, she ignored the instructions on the daily note.”
She stepped in from the hall and said, “Lie! There was no note.”
I pointed to her bag, “Odd, since you put your bag directly atop about 1/3rd of it.” She grabbed her bag and tried to destroy the note.
There is a certain ‘ass covering’ action from some workers. The regular worker was moved elsewhere and she was another who had been thrown in, hadn’t read the care notes, hadn’t read the care plan, just put her bag down, and called beacon about what pills to administer (written in the care plan)
Eventually Beacon wanted to speak to her, she grabbed the phone and leaving the door open went quite a ways down the hall. Since it was her phone I slowly closed the door and silently locked her out. A Beacon manager called me and needed to see the kind of note that DAY. I told her that we had sent it to her, then sent it AGAIN last month when this happened, and the VIHA manager had it as well. She understood what went wrong, and I asked her to stop sending replacements and stealing the regular person or have the person READ the care plan before coming (they can download it or access it online). I said, since she wanted this all resolved, could I have her name so I could know who to refer the RN’s to next time.
“Oh, I’m just a temp filling in and there is no point, as I won’t be here next time.” She said not giving her name.
Sigh. I called Linda to let her know she would need to do both her work and my care later.
There have been a lot of rapid declines in health in the last two weeks. Beyond the problems with heat, now the autonomic function to tell me whether I am hot or cold is dead. I alternate between chills and full body goosebumps to overheating in minutes and then back to freezing for three hours, all in the same bed. The kidneys stopped, have been not working off and on for a while, but stopped, bulging and pushing the skin in the back out. I lay on them, the pain bearable because of the amount of pain elsewhere. The Fentynal has been increased 1,000% from the first prescription and I am over the maximum of the ‘breakthrough’ pills also, taken ever 3-4 hours.
Edema of the brain, chest, upper arms, groin, and face could be both lymphedema – a failure of the lymph system or Super Vena Cava Syndrome or something else all together. This week I didn’t really eat and lost a lot of weight, last week too. The nausea makes it hard, and often I am paralyzed when I wake up, so unless someone comes, there is no way to move. My hands wake in fists or clamped to my other wrist, due to the pain.
I have been having seizures of the body, arms shooting off into space or my lower legs and feet going onto point, and waking me up from the pain. I’ve woken three times from biting my tongue in my sleep and also my lip, my cheek. There are strokes which make the face droop and it harder to swallow anything. But no, no body yet.
When I can, I fight, and when I can’t I resist, and if I can’t do that, I just hold on, or try to find a handhold.
That’s all there is. Except I decided I am a queer pirate: I’m here, I’m queer, run in fear!
I watched Machete, and while it gets 71% on IMBD and 73% from critics at Rotten Tomatoes, none of those critics were female. I must miss the part of the brain which finds a guy who attacks people with garden implements (in three to four different times of the movies), has sex with naked women every 20 minutes, and goes against the anti-illegal Hispanic vigilante group with a Hispanic collective…..in jacked up bouncing cars as a super film. (I watch it so you don't have to - I showed part to Linda, she was....less than impressed).
Because what else is there to know about Hispanics except they like to have cars that bounce – bounce, bounce, bounce: there are the prolonged shots of outside the vigilante base with cars and trucks bouncing, bounce, bounce (and the guy pushing the freeze ice cream and drink cart in the back). Bounce some more, then break through and lots of shots of vigilantes being bounced on by those ‘wetbacks’: bounce, bounce, bounce. Oh look, Machete has an extra large machete (5 feet long) to attack with (which has no symbolic meaning at all).
Quote: “Oh, he is a Federale, don’t you realize that is like the FBI, CIA, NSA, police and SWAT all rolled into one but tougher!”
The vigilantes hire a ‘pro killer’ who has a late night commercial showing him doing push-ups.
Spare your eyes and watch The Man with No Name DVD’s with Clint Eastwood. Sergio remakes the Seven Samurai, while Machete remakes the song “Speedy Gonzales”. Ug.
I’m off to sleep more and then and go see the outside world.
Surviving is hard. Some weeks it takes all I have to do that.
It is when I feel most alone.
So close, but no, the dying didn't stick.
Port Townsend trip next time, okay?
2 hours ago