Saturday, July 22, 2017

Start With The Semi-Vegetative



Thousands of unresponsive patients might actually be conscious


so start with the "semi-vegetative." That's what I am. I'm not sure if this classification exists outside of the United States.

What I have experienced this class to be was initially being vegetative, and later starting to talk. I believe other patients with this diagnosis also started to show emerging signs of consciousness. Some may have then stopped. Others may have expired.

"Semi-vegetative" may have started after this, the reawakening of Donald Herbert:


I did not expire like this man.

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I've thought this before and now it crosses my mind again... the advances of medical science are inadvertently causing what we call 'a return to consciousness.'


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There is a tree in the forest that falls. No one sees it or hears it. No one cares that it happened. Now there is one person in the forest. The tree falls and is witnessed. Still no one else sees or hears this. The person goes home to family and relates what happened in the forest. Now the tree falling becomes a fact and the story spreads. No one would have known without communication.

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I'm now wondering that what we call 'a return to consciousness' is really 'a return to communication.' I was conscious years before I started writing. Medicine and therapy afford me the ability to write.

I now consistently and appropriately communicate thoughts and observations. I regained communication not consciousness.

Tuesday, July 18, 2017

Consciousness is Complicated


Contrary to  popular belief, I have always been conscious. I was conscious when I couldn't talk or move. I could only stare at you. How could I remember where I was if I was unconscious? Recalled Itinerary 
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I was sent  an article on consciousness, http://nautil.us/issue/49/the-absurd/when-neurology-becomes-theology. It was saying science doesn't even know about it. So, if science doesn't know what it is, then how can anyone take it away?

The government took something it had no business taking. How can the government give back consciousness if they don't even know what they took? I don't know how much will be affected by what they did.

What they did:  they removed my payee when I couldn't talk, but left me PVS. This meant I could pay a bill, but I was unconscious. THEY TOOK MY CONSCIOUSNESS!

It affects my Medicaid (Medi-Cal). I only get the bare minimum because my diagnosis says I'm dying... like tomorrow. (Hopefully I'm not going to die soon.) Nothing can be added now because I am unconscious and dying.

That was almost 15 years ago. If I had died, no problem.

For those of my readers who are doctors, have any of you ever had a patient who was going to die, it reached government paperwork (so days have passed), and then the patient turned around and got better?

I'm trying to figure out now what can be done. I guess I will "push" the system. As Americans have faith in the Declaration of Independence and all amendments. One thing I have found is that I don't have problems with absentee ballots. This was an amendment and voting was written very well.

Next is income. I don't fit the "Back To Work" criteria, but I write. When I generate income, the IRS can figure it out.

Medical is screwed up. That may take a lawsuit, but I prefer not to push one.

Who knows where my "consciousness" is. Actually, I know I am conscious, but this other thing sounds like a piece of paper you get from the Wizard of Oz.




 



Saturday, July 15, 2017

Crowd-Sourcing Ideas


Recovery from LIS, Locked-In Syndrome, can be a long process. Not much is known about it. I got to thinking... I only can speak a few sentences. Maybe it's not a mystery that I talk without swallowing. It's just time I learn how to swallow. I know a long time has passed. Maybe these lollipops I use are just the right thing.
 
I'd like to get the thoughts of #speech therapists.


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It's been a few months since I started using lollipops to learn how to swallow. I notice I'll swallow throughout the day but it is not controlled. I just can't make myself swallow. It just comes.
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I'm using the computer for therapy. In this case, speech. http://braininjuryknow.blogspot.com/2015/09/using-computer-for-therapy.html
 
I'm crowd-sourcing ideas. With this issue, speech therapists from around the world can have input.







Saturday, July 8, 2017

Be Still My Heart


"... did anyone ever die for a few minutes and come back?" Was asked in a cancer group. https://www.emaxhealth.com/1/recent-near-death-experiences-cancer-patients
The article is on cancer and fear of death.

I don't have cancer. I had a minor car accident and stroke almost 15 years ago. Bleeding in my head nearly killed me. Actually, it did kill me and I was revived. That's a different way of saying my heart stopped.

Initially I was told that my heart never stopped. I was believing this until I read the medical records. During the initial surgery to stop the bleeding in my head, my heart stopped. Records only say "blood pressure and hypothermia were resuscitated."

Click
I was curious how long I was without a heartbeat. I wondered how long I was in surgery. I could have been without heartbeat a few minutes to a few hours. I messaged my mother. Her answer was more than I asked for.

It seemed like 13 to 14 hours. I met the surgeon outside the steps of the trauma hospital. We drove directly from the beach in Santa Cruz to Roseville 5 or 6 hours. Got there about 8 pm ? I signed the consent and you were in there all night until after 8 or 9 in the morning. You stayed in the trauma center for 30 days and were barely alive. I stayed with you. The first week you had a doctor in your room 24/7. You went through total body shock and the doctor did some weird experimental stuff and reversed the shock by running all your systems backwards and changing your body chemistry. He was some kind of genius that they couldn't explain all the things he was trying and he paced all around your bed like Dr. Frankenstein. Talking to himself and yelling orders.  He was a gruff looking man who seemed like a mad scientist.

So, it could have been quite a few hours that I was without a heartbeat. To any medical providers, does any of this sound familiar? I'm not sure how systems were reversed. To the original providers, I am obviously not dead. I am not vegetative, although I am classed that way. I don't speak a lot, and you get more from me typing with one finger.



Monday, July 3, 2017

I Got This


My case should have changed departments long ago;  if that is even possible. At least the NIH (National Institute of Health) should have been referred to for investigation. Do they even have a referral system?

Instead, my case is handled through The Centers of Medicare and Medicaid Services (CMS). They are the agency that initially removed my payee so I could pay a bill but left me unconscious (Persistent Vegetative State).
 


The person who thought this up (pay a bill but be unconscious) must have been so proud. In reality, the person, and perhaps the entire agency, is operating on The Peter Principle.



There is a big error already. I am not unconscious. I could direct payment of a bill. Like directing payment of a bill, I could direct my medical care.



I have directed my own medical care. I've done better than any government plan. Following their plan wouldn't have a very good outcome. Their plan was to treat with medication until death. I don't think of death as a good outcome.

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The Centers of Medicare and Medicaid Services (CMS) is the agency that took off my payee but left my diagnosis as vegetative. When that was done, I could not speak. Over the years, I could vocalize more and more. I was using 1-3 words but not yet typing when Stanford did the procedure to remove the AVM in my head. I had no problem communicating with them.

After the Stanford procedure I returned to the government program at another hospital. This program is no longer there. After a year and a half there, every patient was packed up and moved. The hospital did not close. The program did.

I was sent home to die, from an AVM in my head that was removed earlier by Stanford. The place that sent me home is the place that removed Stanford's stitches. That sounds like karma of stupidity...not the hospital, but the program.

More years go by. I type now. I type a lot. I speak more, but not as much.



Maybe if CMS gave me some speech therapy.... They can't because I'm designated unconscious.

Oh no...it's the karma of stupidity again.

It doesn't stop there. CMS has created a huge problem. Left and right, people are hearing about an unconscious girl who writes. This whole problem could have been avoided if I had been changed to MCS (Minimally Conscious State) rather than left PVS (Persistent Vegetative State). Now I'm Semi-Vegetative. What's that?

I talk without swallowing. Well, that's a created problem. Speech would have taught me to swallow while teaching me to speak. I taught myself to speak. I am not a speech therapist. Now, I do not swallow when I speak, so CMS says I'm not conscious. It was a Catch-22.

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The CMS Strategy


In December 2016, they cut off all food and supplies for my feeding tube pending I have a swallow evaluation. I had one at the end of the month. I guess their creative strategy was "don't feed her." It's a good thing I had a daughter stock-piling food for the Zombie Apocalypse. CMS did the very same test a few years earlier without stopping my food. I could only see this as some sort of punishment.

The test revealed I still needed a feeding tube. Food and supplies didn't get back on track until February 2017.

This is the mentality I have to deal with.


Saturday, June 24, 2017

I Don't Think Like A Human



It may be hard to think like a scientist for some https://digest.bps.org.uk/2017/06/20/5-reasons-its-so-hard-to-think-like-a-scientist/ but it isn't for me.  "Thinking like a scientist is really hard, even for scientists." It goes on, " But parking your own agenda and staying objective is not the human way."

So I'm not human?

I used to use that song when I would joke on Twitter that I'd fly in my UFO.


I had a hemorrhage, a bleed in my brain.  

"Hemorrhage" sounds so bad. It is a bleed. The word "bleed" doesn't sound as dire. It's easier to spell. I had to look up the other. Why wasn't it just said I had a stroke? Is someone better if they use big words?

I shouldn't be writing this. I shouldn't be thinking. "Thinking like a scientist" is out of the question.

Now I think about stem cells. More specifically, I thought what happened to me is a proposed experiment. http://thoughtfulveg.blogspot.com/2017/06/sparking-imagination.html

Now that's thinking like a scientist!

I pay attention to different things, now. I'll notice what's not usual, and can be broadsided with the plain and obvious.



I'm still human. My blood is red. I'd say I think like a human, just a different one.


I don't have green acid blood.



Sunday, June 18, 2017

Why I Need To Be Made Conscious


I accept my disability no problem, but it messed up my Medicaid. I had to go back in records. What I found.... 


I am not conscious. "Vegetative" was never changed. "Semi" was added later, but it still used the definition for Persistent Vegetative State. "Vegetative" is not conscious. If the person is awake, it is an open-eye coma.

To top things off, I may be brain dead. The term "brain death" was never used. My medical records list my demeanor at one hospital. These are the same criteria for brain death. My records go on since I didn't die. Is it only implied that I was initially brain dead? The original criteria is never refuted.

I receive Medicaid services for a vegetative person, also called a Vegetable. In California these services are called Medi-Cal. The services I receive are very basic medical services. I get less than others with Medi-Cal. Therapy is not included. Messing up my Medicaid back then when I had a brain bleed meant messing me up now to every day that will come until that Medicaid is fixed. I've gotten no rehab. Any future therapy I will need is already denied.
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A question was asked about trading your eyesight for an IQ increase, IQ Increase Question. "So maybe the first thing I will think of, will be to actually use my brain to restore my eyesight." I've done eyesight well enough to see my room. Lets Make a Deal recounts my eyesight recovery. The essay discusses eyesight rewiring.


I have other issues that I have applied my knowledge to. About two years ago, the GI Specialist for my g-tube commented that he just wanted to remove my feeding tube. It was getting infections at an extreme rate. I talk now. This would lead a person to believe I didn't need it. 

The problem is, though, I talk without swallowing. I never got Speech Therapy, or this would have been worked with along the way. Now you see me sucking on lollipops. I'll learn to swallow like the children with oral aversion I had long ago worked with as an Infant Development Specialist.




I do not get Speech Therapy. I am never to get Speech to teach me how to swallow. Just when I thought I had my speech up to a passing level, I find I have one more thing to do.


Walking is another big issue. People can see the wheelchair. I have posted pictures of me standing. Like Speech, I do not get Physical Therapy (PT). I taught myself to push to a stand. I figured if I could only get my body to be like the toddlers I used to work with then  PT would step in. Therapists want to now. They see something they can work with. Insurance, or lack of, prevents them.


 I stood long enough for the photo.



First off, I am not designated "conscious" on government paperwork. Unconscious people don't get therapy. Second, Medicare does not provide on-going therapy. I think it something short like 30-days a doctor can put a referral in for. The therapist can then request an extension. I've done this. It's too short of time to learn walking. This is one more issue for me to work on alone.



Fine motor skills are good enough for a pass. You can read this, can't you? I'm using only one finger, but that is all that is needed. An Occupational Therapist (OT) will tell you I need more, but they are used to funding being cut.



Obviously my cognition is off the charts or I wouldn't be writing this.

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Services for this population are piss-poor in this country. There is an underlying discrimination of disability. This probably affects that.

I am not conscious. Again, this is probably due to discrimination. I have a brain injury that makes me a "retard." I may be a smart "retard" but I am an unconscious one. That makes you better than me.




Since I cannot get consciousness any other way, I ask for a Presidential Pardon, https://www.change.org/p/president-of-the-united-states-declare-angela-conscious. Being made conscious will improve the quality of services I receive.