Sunday, March 30, 2014

The Medicaid Shuffle

"A Canadian man who was thought to have been in a persistent vegetative state for more than a decade has been able to communicate to scientists that he isn’t in any pain."  

Now imagine someone like this with a very rare disorder that makes the brain injury go the other way. The person gets smarter. The person is so smart, that she figures out how to move a finger and she can now type.  That's all I can figure that happened to me.

Nothing like this ever happened before, yet I am writing this. The above video is the closest I could find to an explanation. Yes, I am still unconscious and in a coma. Comas can be eyes open. "Vegetative" is a coma, and I am vegetative. People are amazed when I tell them. Doctors stare at me. My medical records reflect that I am vegetative.

Supposedly my brain was all wiped out by a brain bleed. I only had some brainstem allowing a heartbeat. I didn't even have a full brainstem! I couldn't breathe and was on a ventilator. There's a big hole in my neck now that is slowly getting smaller now that I breathe. I wasn't ever supposed to talk. I do now and that's getting better as it wasn't understandable. As for writing this? Amazing is all I can say,

All of that didn't stop my bills. I couldn't believe the misconceptions I've seen. Since I opened my eyes, but I am still in a coma, I can tell you what happens to bills and whatnot. 

I was employed at the time of accident, so I had insurance. It was very good insurance, too. (If a person does not have insurance, there is a way to get government assistance,  but it may not cover everything.) Medical insurance from your employer takes care of medical bills while you are employed.

If you don't go to work, you don't stay employed. Although I technically wasn't conscious and couldn't talk, I had long periods of lucidity where I could communicate with my mother by blinking. The doctor sent a letter to Social Security. Social Security suspended my payee so I could pay my hospital bills myself. The payee was slow and usually late. Social Security left me unconscious. Hospital bills are immediate. Bills don't stop while you are in a coma. I had good insurance that I didn't want to lose since I couldn't go to work. I kept it under COBRA and was forced to forgo all of my other bills. COBRA is expensive.

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."

Mind you I'm still technically unconscious. I could say most words by then. So I'm unconscious and talking...and could pay my bills. This second time that I was placed, that hospital sent me to a "Sub-acute Hospital" which was nothing more than a large nursing home. I was doing the Medicaid Shuffle. This is how long-term disability is dealt with by the government in my case. 

A few months later  I ended up in a different hospital with dehydration. I was lucky I didn't die. That hospital fixed me up and filed some sort of complaint. I went back, someone from the state came and asked me questions. I was moved while I had surgery at yet another hospital.

That next hospital placement lasted a little over a year. It was a long-term sub-acute unit at a (real) hospital. Medicaid does not pay enough. The hospital had to close that unit. I didn't want to continue doing the Medicaid Shuffle. All the residents were being moved to nursing homes. There was an option for a family member to sign you out. I managed to do that. I left that hospital unconscious, and that is how I remain.

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.

Monday, March 17, 2014

Tears of an Angel

I do it for the angels who cry. A tear is usually caused by something, something bad a lot of times. It usually takes knowing. A single tear is different from the eyes watering. There isn't an irritant to the eye. I used much of the following when filling out a form:

Briefly describe your issue and include specific information (dates, places, who was involved, etc.)

I had a severe brain bleed. It was a bleeding stroke, or AVM stroke. The bleeding in my head wasn't stopped for hours. By the time it was, I ended up in a coma. When I opened my eyes, I was first determined brain dead, then vegetative. This gives commentary and a newspaper article,
I'm a vegetable and not conscious.

What have you done to
address this issue? (i.e., filed formal complaint/grievance, exhausted
administrative remedies, contacted involved individuals, etc.)

The first thing that happened was in the second hospital,

I contacted OCR, the Office of Civil Rights. (E-mail with OCR is at the end.) It wasn't civil rights (they said) and they referred me to CMS,
the Centers for Medicare and Medicaid Services. The CMS e-mails are attached to CMS was awful because I had to do a letter.

Basically, it's okay to be a vegetable on your own as long as you don't get into trouble. They still reserve the right to take me from my home and put me in care.

What would you like [us] to do for you?

I would like to stay in my home. I don't want to be scared to go to the ER.

"Far too often, patients ... are given up for gone, left to
languish in nursing homes where no one bothers with physical therapy or even to check for glimmers of regained consciousness." I was one of these people. I probably have a rare disorder allowing me to communicate. I do this because I can and there are a few who can't. I've had to listen to a roommate cry when her mother left. No one can tell me that's not consciousness.

The girl pictured above is Shea Shaw.

Her website is  She can also be found on Facebook,  I initially saw pictures of her BEFORE her eyes opened. She is on a very slow track also. 

Friday, March 14, 2014

My Death Bed

I have a semi-automatic hospital bed. It's much like the one pictured above. I have the short rails on mine. It came from a medical supply. The  hospital I was at before I came home ordered it for me. Beds are usually ordered for patients through a hospital or hospice. I guess a doctor's office can do it. The patient goes home and dies, usually. The bed goes back to the company. It then goes to the next patient going home.

These are death beds!

Once in a while a patient doesn't die. I was one of these. Long ago I got a notice from Medicare. They had been paying monthly rental on my bed. I hadn't died so they purchased it. I outright owned a hospital bed!

A year ago, the rail on the bed came off. I had someone call the medical supply company to get it fixed. The medical supply didn't know what to do. A person usually dies and doesn't need the bed repaired. The company couldn't fix they sent me a new bed. It was a brand new bed, still in plastic.

No one died in my new bed.

Monday, March 3, 2014

Understanding My Progression to Consciousness

I left the hospital as "semi-vegetative" so I remain "semi-vegetative." What is that? I looked. There's no such thing. I'm only guessing, but the term was coined to describe a high functioning vegetative person. The only difference between "semi-vegetative" and MCS (Minimally Conscious State) I can think of is that "semi-vegetative" starts as vegetative. Someone can't recover from being vegetative. This is what allows some people to be terminated. This happened in a high profile case.

That case is one reason why I left medical facilities. (I've said many times I am doing a medical independent living. I got out rather early, but I knew how to use medical supply companies. I was probably expected to die soon and this situation now wouldn't have occurred.) The feeding tube is why I contacted my local ACLU. It wasn't protected while I was in care. The ACLU in Florida represented a vegetative person there. I wanted to keep my right to eat.
No one factored savant syndrome happening in PVS (Persistent Vegetative State), or just "vegetative" as above. I most likely have this (Savant Syndrome, acquired form). The result has been a slow progression to consciousness. Also, there have been physical changes which I document in photos and video. You can't go from vegetative to semi-vegetative as I have and you can see why. Although I could still fit the definition physically, I don't mentally. It would have to go PVS to MCS. This then allows recovery of consciousness. If not, this whole thing was written by a vegetable.

As for my physical body..."vegetables" are not invested in. Therefor I do the best I can to provide therapy, as my therapy skills revolve around the infant. I push to a stand and my "R"s sound less like "W"s.

The way it stands now, I am not conscious. I started as vegetative, and remain that way. In the eyes of the law I have not recovered. I have been not conscious for a long time.