Monday, August 22, 2016

My Mission: A Mission Statement+

I search for consciousness. Where do I start? You see I don't have mine.

Long ago I was in a coma. When I opened my eyes. I was out of it. I was out of it for years. My conscious was taken away on paper.

The paper saying my conscious was gone has become as permanent as your Social Security card. It's something permanent given by the government - society-at-large. I am asked what document needs changing. Well it must be a government form. I can only refer you to government.

My mission is to find my consciousness and have it reflected by society.

*Comatose patients do not get therapy. I am in an open-eye coma. I am not conscious. I do not receive therapy.

Thursday, August 18, 2016

I Need A Strong Swallow

I have a feeding tube. You have to feed people in comas some way. I give you the following video not to gross you out, but show you how it can be done. I have the permanent g-tube that goes in the belly. A hole was surgically cut in my stomach. The following video shows the nose. I have only seen the nose used in hospitals. A hole is cut in the stomach for longer use. This diet is short-term.

Yes, I am on a g-tube diet. I have acid reflux, though. I have to use a formula that tastes good. The reflux will sometimes regurgitate formula into my mouth. I use Ensure. It's the same kind you buy at the store.

What was thought to be permanent in me is turning out not to be permanent at all. I talk now.

Talking has been slow to come. That could be because I do not receive therapy. I only have general knowledge in this area.

This is where it gets sticky, the g-tube is prone to infection. There have been serious, life-threatening infections.

I do have a weak swallow now. The g-tube doctor wants me in speech in order to make my swallow stronger. Then I could regularly take Ensure by mouth. The g-tube wouldn't be needed.

Speech isn't offered to people in comas. Remember at the beginning I said it was thought I'd be permanently incapacitated? "What was thought to be permanent in me is turning out not to be permanent at all." So the coma that was put on paper doesn't really fit anymore.

People take one look at me and say there was misdiagnosis. Well that original diagnosis now impedes me. I can't get speech because I am in a coma on paper. The g-tube doctor can't coordinate with anybody on making my swallow stronger so I can take my food by mouth. In this case, speech becomes medically necessary.


There was a time when there wasn't a swallow. Now there is.

I credit this device for giving me a weak swallow. I had no swallow. (This thing isn't even patented, yet...but I got one.)

Wednesday, August 10, 2016

An Ode to my Telescope


I used to have a telescope. It went to storage with my other things. I was hospitalized for years. The storage lapsed. I wasn't expected to ever get out of the hospital alive. I did, but all those things are gone. I miss the telescope. Now I can't look at the stars.

I lost everything while there. Pictures were hard to lose. I had been saving some from childhood. They were gone. They were all gone.

I had a really good photo album. Remember when scrapbooking started? I did that. It's a very intricate way of mounting photographs. Each page of the photo album becomes a work of art. I give an example.

Scrapbook Example

Luckily, I could still get my children. A year after my hospitalization, they went to a sister. My boyfriend left the state. He had a new girlfriend. My girls were still available, though. They grew up with my sister. Years would go by.

I kept in regular contact. I followed every guideline... including I got better. The federal government said I was unconscious. Explain that to the worker. He gave me custody.

Medical science can explain why I got better. The law doesn't care how, just that I did. 

(The court cases were Superior Court of California, County of Sierra, case number 1966. They may be cited. I am disabled, total care, but living independently. The children were older and did not require personal care. Winning custody cases of a disabled parent are hard to find.)

The children have successful outcomes.

Saturday, July 23, 2016

just my thoughts... (oxygen)

Here's a big problem...all services cut off before a brain injury victim is done recovering.(This is my take and not anybody's quote.) "Throw 'em in a box and forget about 'em." Loved ones find out about HBOT. The brain injury survivor isn't getting anything. HBOT is something. The brain injury survivor will benefit of course. There are some other unorthodox therapies having the same effect (for example music, aqua, and equestrian [horse] therapy). There are more therapies. I only list a few. 

All of a sudden, a therapy starts. There's improvement. The therapy is credited. In reality, therapy in general should have been provided all along. HBOT has the added benefit of oxygen. You can get oxygen in other ways. I did. Here's one:

It would be so easy to give a brain injury survivor a prescription for that. Any medical supply can deliver that to your home. If you get mail, you should be able to get that.

Oxygen can then be used in the treatment of brain injury management. 

[I routinely had oxygen in breathing treatments for my tracheostomy, not for brain injury. I see a need for the oxygen part and not the hyperbaric part of HBOT.]

Wednesday, July 13, 2016

Vunder Blunder

Look out!! I'm a wonderful vegetable that comes up with words like 'vunder.' So what is 'vunder'? Me, I guess. I'm a vegetable that makes you wonder.

What is a blunder? A huge mistake.

I am potentially a very big blunder. You see, on paper I am in a coma. It was made permanent when I couldn't speak and now I am never to be conscious. Now that I do communicate, I can't change it back.

My incident was 14 years ago. Yeah that's a long time, but not permanent.

I say I am a potential blunder cuz I haven't "woken up" yet. I'm still in a coma according to the government, What happened will be a big blunder, and here's why...


Here's a refresher on Terri Schiavo. For more watch videos. I don't want to get into a controversial issue, but my situation is so tied to it, that you have to know it. I've taken out most of the emotion in this case.

Terri Schiavo had a heart attack and went without oxygen. She was resuscitated, and given a PVS diagnosis. I believe the P stood for 'Persistent', but it's coming to mean 'permanent.' I've seen both words used. The Florida Supreme Court said her condition would always be that way and her feeding tube removed. You don't have to feed her. The federal government stepped in. It was on TV. It was big. The lady died. The federal government said there was no recovery possible. It went world-wide.

The word 'Persistent' is being replaced with the word 'Permanent.'

Now here I am on the West Coast. In 2002, I have a massive stroke. I'm deemed vegetative, I can't talk or move. The state disagrees with Florida and doesn't terminate me by removing my feeding tube. (My experience is that they disagree. I haven't explicitly heard that.) Later, I start making sounds. Oops, it wasn't a permanent problem. "Oh well, she'll die soon," was the thought. No one knew I was extraordinarily smart and lucky. I got the surgery I needed to stay alive. I didn't die. I've only gotten better and smarter.

Somewhere around the time of that surgery, my diagnosis was made 'semi-vegetative.' I was only half a vegetable.

It gets even better. That surgery I mentioned is not accepted by the government since they didn't pay for it. It never happened. The blood vessel deformity in my head magically disappeared.

That's probably the most vonderful of all blunders.

*I doubt this mistake has any intent. The government is just slow. This means I have time to write. The longer I have to write and make videos, the more stupid this looks.

Sunday, July 3, 2016

A Mess

In Dec 2002 I had a brain hemorrhage. I had a car accident earlier that day and it was assumed to be that. After hours of bleeding, I had to be given blood. I had lost so much that my head was opened to see why I was still bleeding. Doctors saw the AVM, arteriovenus malformation. It was the cause of the bleed. It was embolized (stopped up with glue). It's sort of like a tumor, only it's blood not tissue. An AVM happens when blood vessels knot up and the wrong type of vessel does another's job. It's a big mess that can cause an even bigger mess. (It's rare and don't worry about getting it. You can't catch it.)

AVMs usually start bleeding way before they are noticed. I was told mine was hours before a car accident. It probably was the cause of my accident. I have heard some bleed months before detection. (An AVM is considered a pre-existing condition and mine was not covered by insurance. Mine was there from birth.)

Records say my "blood pressure was resuscitated." My heart was restarted and I was closed back up. It was thought I'd die then cuz I lost so much blood and records do not state how long I was without heartbeat.

I was in full coma 5-6 weeks. (When I opened my eyes I was labeled as PVS, another type of coma. I am writing this. That should be brought into question.)

In 2004 the AVM was removed in a risky procedure at Stanford University's hospital.  Stanford did at least three embolizations and then a craniotomy was done. The embolizations first shrank the AVM. Feeder blood vessels to the AVM were targeted in smaller operations before the final operation. They were closed off by injecting them with a glue-like substance. A final craniotomy then removed the AVM. The embolizations were done as out-patient. I was admitted for the craniotomy.

I believe it was before Cyber Knife surgery was invented. It would have been a precursor, but it was not directly involved. I did have stereotactic radiosurgery. 

Here's Cyber Knife. My embolizations were out-patient.


I went a good nineteen months post bleed with an AVM no one would touch. Only Stanford would do it. The AVM that originally bled and almost killed me, was left there so it could kill me at any minute for nineteen months. That is over a year of I could be dead the next morning. I now don't keep anything and long-term planning has been difficult but is slowly returning.

This video is the same person singing above. The song is about his AVM bleed. He says he has no memory over parts of his. I do have all memory.

Friday, June 24, 2016

Is it too good to be true?

Excuse me, but I used to be blind in my right eye and now I'm not, and nobody sees that as a big deal?

I've thought it was rewiring mainly, but I recently read that an over-the-counter eye medication is reversing the damage caused by MS. Could this be the same thing happening with brain injury? Eye drops or my body...both should be looked at.

"A common antihistamine used to treat symptoms of allergies and the common cold, called clemastine fumarate, partially reversed damage to the visual system in people with multiple sclerosis (MS) in a preliminary study." What brand is it in? Tavist came up.

I take a different medication. I use Naphcon-A eye drops. They are both allergy medications. At home, I will put the eye drops in as soon as I get a burning sensation in my eye. The burning stops immediately. To note, my eye may have already been closed for an extended time. It would not be dry eye. Long ago, when Naphon-A became OTC, my doctor said it was a "vasoconstrictor." It works by narrowing the blood vessels in the eye. I'm pretty sure what got me here was vascular. I had an AVM (arteriovenos malformation) bleed. I know, "'had." That's past tense. It's now gone. Isn't it a vascular problem? Blood vessel dilation and constriction is also vascular. There may be correlation here.

I do know I see now with both eyes. I may not be legally blind anymore. I would still be low vision, probably. Testing is not covered.