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.
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.
That's what I think happened to me...or some variation, probably caused by gravity, or some medical procedure.
Originally,
I thought I may have spinal stem cells, caused by the bleed. I was told
that the blood from the bleed "ran down your neck." What major bone is
in the neck? The spinal cord is there. I figured I gave myself a spinal
tap with the bleed. http://thoughtfulveg.blogspot.com/2017/06/sparking-imagination.html
This study is controversial because they want to do it on brain dead patients. You can't get consent from a dead person.
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Why
is this man so happy? Why is he singing to me? He read my records from
the first hospital that treated me. They don't outright say that I am
brain dead, but rather list the criteria. That's a good thing for me
because I would have one heck of a time trying to get that monkey off my
back.
So, if I am brain dead, or significantly damaged, how am I doing this?
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There is also another issue to consider... whatever happened, "released my inner genius." My knowledge has increased as brain injury symptoms have decreased. Would this procedure universally unlock genius?
Now
I live in my own home. I got back custody of my kids and finished
raising them. I sometimes talk on the phone and I pay my bills. I can
mostly dress myself and depend on someone to hook up my feeding tube,
place me in a wheel chair, and do routine household chores. I'm still
unconscious and the state retains the right to place me in a nursing
home. http://thoughtfulveg.blogspot.com/2014/03/the-medicaid-shuffle.html
I
speak well enough to ask for a court order before that happens. Umm...I
speak. People will be doing a double-take. I was placed in hospital
care and forgotten about. I left the hospital and have been hiding out
in my own home since 2006.
A
big reason for leaving is what I call the "Medicaid Shuffle." When my
after-stroke ordeal started, I had already been in two hospitals, the
trauma center where I had the first surgery, and the rehab hospital. The
trauma center records are the ones that can be interpreted as saying I
am brain dead. I've read them, though, and they don't use that specific
term. It does have a medical term that can mean that in some circles. I looked brain dead at that time, and that's probably how they were
interpreted.
Eventually
the private insurance ran out. The hospital I was at moved me to a
Medicaid bed. (The bed was actually called that!) I waited in that bed until I was moved out of that
hospital. Initially I was sent to a care home that wasn't near family.
That place sent me to another home a few months later. I was at the second
home a few months and then ended up back in the hospital I started in. I call this moving the "Medicaid Shuffle." http://thoughtfulveg.blogspot.com/2014/03/the-medicaid-shuffle.html
That's how the "shuffle" started. That's three placements right there.
I
had pneumonia. The hospital that sent me to that nursing home fixed me up again and sent me to a
long-term sub-acute hospital near Oakland (like across the street). I could look to the end of the block, and across the street was Oakland.
I
ended up in another hospital a few weeks later with pneumonia and
dehydration. I had to give a taped interview to a state investigator.
I don't count Stanford in the Medicaid Shuffle, but it was part of my journey.
July-Aug
2004 Surgery(s) at Stanford University Hospital. I stayed there a few days,
but this is omitted from records because it's not government. They removed the AVM
in my head that was to kill me. With this gone, of course I'm alive.
The government omits it, so now it's a miracle that I'm still alive. http://thoughtfulveg.blogspot.com/2016/11/dates.html
While having a procedure at Stanford, I was moved. The
last hospital I went to was for over a year. When the unit I was in was
closing, I didn't want to move yet again. I contacted a family member.
I'm now in private residence. That original family member hasn't
provided care since 2006. I rely on a local program and a daughter who
is now 'old enough.' My father and nephew are next door if needed.
That
was the "Medicaid Shuffle." I wanted to change their slogan to, "If the
condition doesn't kill you, we'll move you around and make you die."
I was thinking that the way I believe neurogenesis was started may have
possibly set up a never-ending cycle. I'm re-reading the primer on stem
cells put out by NIH. It's been updated. It now appears that I may have
iPSC cells. "Induced pluripotent stem cells (iPSCs)
are adult cells that have been genetically reprogrammed to an embryonic
stem cell–like state by being forced to express genes and factors
important for maintaining the defining properties of embryonic stem
cells. Although these cells meet the defining criteria for pluripotent
stem cells, it is not known if iPSCs and embryonic stem cells differ in
clinically significant ways." https://stemcells.nih.gov/info/basics/6.htm These are very much stem cell-like.
Originally,
I thought I may have spinal stem cells, caused by the bleed. I was told
that the blood from the bleed "ran down your neck." What major bone is
in the neck? The spinal cord is there. I figured I gave myself a spinal
tap with the bleed.
What
kind of cells are responsible for my neural repair? Are new stem cells
periodically generated? If the answer to this one is "yes" then there is
the possibility of being immortal. There would be neural repair
forever.
If
I have iPSC stem cells, will they return to the state they were before?
I liked this one theory, iPSCs were originally embryonic stem cells
that went dormant.
This
means my recovery is all due to the NDE. Miracle recovery, yes, but how
do you turn those genes off? There's still a possibility of immortality.
I've never heard of someone living forever before, so this is lacking.
I'll stick with 110 years old, http://thoughtfulveg.blogspot.com/2017/01/new-estimated-lifespan.html
That's just theory! It's not a given fact that I'll live to that age.
The theory has more substance than my being immortal. This idea can
spark imagination, though. I wouldn't mind sci-fi stories.
The real
miracle happened years ago. What is amazing now is just my natural brain
growth. I'm used to the dropped jaw and wide eyes. I was a top-scoring
poindexter, but I had friends. I was like other kids, but very smart.
When high school came along, I dropped out...but started college. (I
passed a test.) I wasn't really the typical kid. I looked like one, but I
was extremely smart.
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If
I had been properly diagnosed in the first place, I wouldn't now be
explaining this to you. I don't see fault with the person who gave me
the diagnosis. Rather it's the system. If consciousness was put on a
sliding scale this error never would have happened. (I would have been 0
at that time. Now I would be 10. You missed 1-9.) I would have slid
from 0-10, much like turning up the volume on your
stereo. My consciousness now screams at you. I was diagnosed before it
was a whisper.
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I
go on...there was a miracle. My AVM (arteriovenus malformation) is gone
and I am alive. I used to joke that my AVM was in a jar at Stanford. A
biologist pointed out that it can't be because it is not tissue. An AVM
is mostly all blood. It is a tangle of blood vessels with no
capillaries. The pressure can cause a blood vessel to swell. I had a blood balloon in my head that leaked and got me in
this predicament.
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When
it "leaked", most people would have died. It wasn't a small leak. It
was a full-on, major brain bleed for me. The AVM only got smaller and
retained all its properties. Bleeding was stopped and it was left there.
It could still do its job.
A surgeon at Stanford University Hospital thought he could do differently.
This gives you an idea. This following video is after my surgery. My initial procedures were also one day. The woman in this video had her procedure done in one day. The initial embolizations I received were done as out-patient procedures.
I
would have a few of these procedures to shrink my AVM to a manageable
size. The AVM could then be surgically removed in a typical craniotomy.
So that is what I did.
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It
came with risks. I had to sign my life away. For all I know, the
machine in that video was tested on me. I doubt it, though. Like I said, my
case was a predecessor. It happened BEFORE. "Cyberknife" did not exist,
yet. The video states this is the latest model of that video's time. Mine would have been more crude, but sci-fi none the less.
The
government wanted nothing to do with this procedure. I had to be seen
through the clinic as an indigent in need. When I went to Stanford for
the final craniotomy I was a resident at one facility, and when I woke I
was a resident at another facility. Medicaid actually transferred me
during a procedure.
The surgery has been successful. I am still alive. This is the miracle.
So,
ask the government to explain why I am alive. They are not responsible
and should take no credit for that. Ask them what happened to my AVM.
I'll say it's at Stanford.
What you see happening now is my normal brain growth. That has stunned people before. I got used to that way back as a child. You need to get used to that, also.