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.
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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

Phenomenal Recovery

Locked-In Syndrome was considered 16 years ago, but I was already PVS, vegetative from 17 years ago. Nothing was written down so any "phenomenal recovery" for me is in the garbage. - Angela 9/18/2019





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.







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"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.

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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. 




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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.