Sunday, May 5, 2019

Getting My Story Out


"It was an honor to tell Angela’s miraculous story in my Merced Sun-Star column" -Mike Tharp.
 
The article was scanned. The direct link doesn't work anymore, but  I put the article in this story,  https://thoughtfulveg.blogspot.com/2012/02/angela.html My music therapist scanned it for an e-mail.

I made the therapist's e-mail into a story. He gives his first-hand account of me. He saw that I was placed with the vegetative patients and that I had started talking. He saw that I was put up front to show off my success. (Unknowingly, the hospital was showing off a grave error. They were showing off that I was misdiagnosed.)
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I don't know why the government STILL says I'm not conscious. It doesn't look good. It looks like they are hiding something. It looked like they were hiding me.

It doesn't make  any sense. I can give the first 5 years to honest mistake. The second set of 5 years should have been investigation. What is the third set (10-15 years)? I'm now on  my way to 17 years. There's no excuse.

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This is the problem with the government's cookie cutter policy. Other cases are not like mine. Every brain injury is different as is every brain. We are individuals.



Saying that we are individuals can get me in trouble. Yes, people as a group are alike in many ways. Each person, though, is unique.



___________________

My brain injury was repairable. I wouldn't immediately have regression and die if I was given the proper treatment. I had to find the independent university that would do this. Stanford, this university, was never given any credit.

What you have been seeing is brain growth. It's slow and methodical. I am not recovering lost skills. I am re-learning them. I'm a fast learner (but it's still years from my injury.)



Tuesday, April 30, 2019

My Set Up


My set up...





When I opened my eyes almost two months after a stroke, a machine was breathing for me. I did not breathe on my own.

I did not speak, either.

Like the man in that video above, I could only blink my left eye. "On 8 December 1995 at the age of 43, [Jean-Dominiqe] Bauby suffered a major stroke. When he woke up twenty days later, he found he was entirely speechless; he could only blink his left eyelid. Called locked-in syndrome, this is a condition wherein the mental faculties remain intact but most of the body is paralyzed. In Bauby's case, his mouth, arms, and legs were paralyzed, and he lost 27 kilograms (60 lb) in the first 20 weeks after his stroke,". https://en.wikipedia.org/wiki/Jean-Dominique_Bauby




I'm alive at home and no one knows how. 1. I got off that machine. 2. I learned my medical care. 3. I became vocal, just a few words. 4. I convinced a doctor to let me die at home. I didn't die, though. I've been slowly getting better. (I had an experimental surgery at an independent hospital addressing my impending death.) _____________________ 



It's not possible that I have any genetic links to this person, Jean-Dominique Bauby. He is a few years younger than my father and died a few years before my stroke. I never knew of his case until years after my stroke. Genetic Memory can not be involved in this instance. What can be spooky, though, may be even spookier in my case. I am familiar with Carl Jung's principals. One I wanted to know more about is connected to psychic activity, the Collective Unconscious. This is the spooky term. Genetic memories may not have been passed down to me. Rather, I picked up on other people's memories and knowledge. I knew what to do because they knew what to do.
_____________________


It will be strange. I started with an NDE, Near Death Experience. NDEs have been associated with miracle healings, but these have been much quicker. I've been getting better for years. Near Death Experiences are strange. They are not explainable. People who have had them have been called mentally ill. The NDE cannot be proved. People who say they have had them are skeptically looked at. My NDE is a bit different. Medical records must be used to determine near and actual death. Also due to my type of injury, I have little to no recollection of that particular instance. My current behavior, or outcomes, will have to determine what happened. This makes the NDE referable. I have no idea how far this slow progression will go.

Saturday, April 20, 2019

Phenominal Recovery


I  didn't want to use the word "oppression," but darn it that word fits. The term is used in disability often. I just viewed that Capitalism views disabled persons as surplus. I disagree. A useless person is surplus.




____________________________________________




"Phenomenal recovery"



I guess the same is happening here. This person found me. This is what's going on, except I have more knowledge and memory, and this is a completely different country.

____________________________________________

I am thinking that it is very possible for a person in PVS to slip into this rare disorder. That would explain the people in coma who are found to be aware. It is not known how far this goes. That is why there has been push for Brain-Computer Interface technology. For more on BCI, https://en.wikipedia.org/wiki/Brain–computer_interface


In the video, the woman describes her delusions. I thought my breathing treatments were poison. Not all treatments were bad. It was just one Respiratory Therapist in particular. I must have displayed distress as the doctor requested someone else. When that very same person came again, everyone was suspicious.


She mentions her children. Mine are my reason that I am alive. Now that they are adults, I can go on and do things like this. I've only become publicly vocal in the last few years after my youngest child's graduation from high school.



"This is a brain stem injury." Family were taught that when I was at the rehab facility. I had that will there, and I knew a lot of concepts. My BA is psychology, which is close. I lacked current medical terms and concepts. I now know about "neuroplasticity" and use the concept a lot.

She ends with "You don't know how happy I am to be unlocked." I still am in some ways. I guess oppressed is the better word.

oppress

[uh-pres]


verb (used with object)

to burden with cruel or unjust impositions or restraints; subject to a burdensome or harsh exercise of authority or power: a people oppressed by totalitarianism.
to lie heavily upon (the mind, a person, etc.): Care and sorrow oppressed them.
to weigh down, as sleep or weariness does.
Archaic . to put down; subdue or suppress.
Archaic . to press upon or against; crush.

I'm still vegetative. Sure the government changed my diagnosis to "semi-vegetative" back in 2004, but I want to know which part of me is still vegetative. Is it when I am asleep? Vegetative is not conscious and I'm not conscious when I am sleeping.

Sunday, April 14, 2019

Life-Saving Treatment


I was refused life-saving treatment by the government. I write this now so obviously I am still alive. I went through Stanford's free medical clinic as an indigent (penniless). They provided the necessary treatment, at a loss to the university.

Now the government just ignores me. What can they do? Admit they didn't do anything?

I am still Total Care. I do not walk. I do not eat. Nutrition comes from a feeding tube. I still have the vegetative diagnosis. These would all be grounds for letting a patient go.

I do something, though, that is very different. I talk. I speak and I write. I use one finger to write down my thoughts, as my speech isn't always understandable. My speech continues to improve, though. There was a time when I couldn't talk.

It was expected that I would die when I was sent home. I wouldn't have 24-hr nursing care. No one considered me. I remembered. Long ago I worked in a carehome. I just relayed important info to whomever does my care now.

As for other medical stuff, I'll just say that I know.

I was supposed to die. Neurological repair wouldn't be done on someone who was about to die. So I found someone who would take care of it. Stanford removed the AVM and cleaned up damage from my bleed. (The AVM, arteriovenous malformation, would kill me. It was a time-bomb ready to explode.)

Now what? I'm not dying anytime soon. Can I be conscious now?





Sunday, April 7, 2019

I Swallow Enough for a Lollipop


"As a consequence of her brain injury, she was unable to swallow using conventional utensils, and like many Americans required nutrition and hydration by feeding tube in order to live."  https://www.lifenews.com/2019/03/29/14-years-after-they-starved-my-sister-to-death-we-must-never-forget-terri-schiavo/?fbclid=IwAR3J9S8A2Y14HpTt-XppmSMEGWlz1uXB4bFb45NpCA9FmwNTUsFv3ATjE2s



That statement could be me. I have a feeding tube. I quote Bobby Schindler. He's Talking about his sister, Terri Schiavo. She's no longer with us. Her feeding tube was taken. She was thought to have reached the end of progress.

The government cut off providing the formula for my feeding tube. So, through a medicare supplement insurance, I get my own formula and supplies. I pay for the supplement insurance and no one else does. I won't depend on the government for providing medical supplies. I don't trust them. They were going to let me die...all because I talk and don't swallow.

Now you find me with a lollipop in my mouth at most times.

 I get all kinds now.

I use lollipops to get my mouth used to having food in it again. It's been a very long time. It has been so long that some would say 'don't bother.' I say it's just lollipops. I'm not doing a whole feeding program.

Lollipops just aren't for kids anymore. Recently, a daughter gave me the following specialty lollipops,



Starting on the left, the first two are Pineapple Upside Down Cake. This is not standard fare. In the center is the jelly and the peanut butter of Peanut Butter and Jelly lollipop. This is a two-sided lollipop. Second in from the right is "The Bird is the Word" which is Fruit Loops, birthday cake, lemon curd and buttercream frosting. Finally, on the far right are two Canoli lollipops. Yes, there is now such a thing.

My next venture is a margarita lollipop. It's been so long since I had a margarita. 




_____________________


I once saw a speech therapist for a few visits. I was hoping to learn how to drink the formula in order to get rid of the feeding tube. The formula is now Ensure. So it tastes okay now. Swallowing my formula did not happen. I do not swallow enough.

The therapist thought I'd be able to do "pleasure eating."  I had never heard of the concept before, but I liked the sound of it. Now that I have lollipops I understand. Certain flavors give me pleasure.

I looked up the concept. Pleasure Eating has to do with Mindfulness thttps://www.bestfoodfacts.org/mind-your-meals/. I do know that heartburn has nearly stopped since adding lollipops. My digestive system may be working muscles I hadn't been using. I only notice one thing, though- I don't have barf in my mouth.



Sunday, March 24, 2019

My Body Was Cold


When I read the initial medical records, it said I had been treated for hypothermia. This is when your body temperature drops below normal. You  usually die. You freeze to death.

I'd joke with people I know that I must have been left out in the snow. I was met with seriousness. This did not happen. Geesh! Can't anyone take a joke?

I suspected that my body was cold because I had surgery. 

Recently I watched the following show. At the very end (2:44), a woman who had an aneurysm had her body temperature dropped below normal for a surgery. I had an AVM. It is also a blood vessel malformation. This body temperature drop would have occurred in me, also.
 



 The body is so cold during surgery that
the patient is dead.


My heart stopped.

Records didn't say how long I had been without a heartbeat. It only said "resuscitated." Since I didn't initially respond, I can see why my family was told that I was brain dead.

Brain death didn't stick. I have been slowly getting better. It is slower than timelines. By the time of the first hospital's finished report, I had gone from brain dead to vegetative. I write now, but I didn't 15 years ago.





Sunday, March 17, 2019

People in comas like PB&J


I've been told I am in coma. I'm being serious. I'm diagnosed as being vegetative. Vegetative is not conscious. When I came out of a coma, I was still out of it. I was made vegetative. So my eyes are open but I don't know what's going on. I've been in a coma all these years and have never gotten better.

Swallowing is a criteria looked at. The test for this is a barium swallow. For me when I last had this test, some barium was mixed into applesauce. I did not swallow applesauce. If a barium lollipop existed the outcome might be different. (No one try to develop one. That just sounds gross.) After my test, I was approved for lollipops. That's improvement!

This is the stupidest thing I ever heard of, I am unconscious because I don't swallow. What's even more stupid are the countless times people have disagreed with me and have tried to show me my mental incompetence.

I'm going to go with it. I am vegetative and in a coma.

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 My order from Lollies By Leah.
Peanut Butter & Jelly is in the middle.


Dear govt,
I like the Peanut Butter and Jelly lollipops from Lollies By Leah. Maybe all persons in coma should be given Peanut Butter and Jelly.



Peanut Butter is on one side. 
Jelly is on the other side.
Video by Ashley Moyer.
_______________________



This is ludicrous! Do they even know what a coma is?

Why is it that vegetative was made an open-eye coma? The state must have some inkling of consciousness. It would be tiny; less than MCS, Minimally Conscious State. It's just a seed and my seed is growing faster. In another few years it will look even more stupid that I am still in coma.




It's sad, so sad (so sad)
It's a sad, sad situation
And it's getting more and more absurd