Tuesday, December 30, 2014

Vegetable On the Loose


People asked what happened and where you have been. Well, I've been at home and home doesn't keep medical records. As for what happened...the closest is this comedy movie clip:



I wasn't a prisoner. The hospital couldn't keep me. As soon as I could, I went out and came back. The very first time I did this I wasn't even completely weaned from the ventilator yet. My sister was having a birthday party at a kid's restaurant and I could piggy-back in and have cakes for my children. I had missed one's birthday and the other had one coming up.

I was on the ventilator at night while I slept. I could get out of the hospital for the day. This was already the second hospital and it had been 9 months.


As I got better, I went out more often. The hospital I was at during my final outing was moving everyone in the unit I was in to other living arrangements as it was closing. I didn't want to move to a nursing home. This was the fourth hospital. (There had been two nursing homes, also.)

A sister signed as a caregiver. I don't think I was ever discharged. Care was only transferred. The arrangement lasted a few weeks and I should have returned to the hospital. This was an area of specialty for me, though. I used to do coordination of services for persons requiring medical care, but remaining at home. I could do this as long as I remained conscious. I wouldn't have to return to the hospital if I could set up community care.

I remained living in my own home, but used community resources. You need to know which ones and if your community has them in order for you to do something like this.

This is what I have been doing the last few years. I have a local specialist amazed at my ability to get special medical equipment delivered directly to me. I just know my community resources really well.

As you can see, I wasn't on a field trip. I was on an outing, though. While out, the economy crashed and that particular hospital unit I had been at closed. I had no where to return. I've done fine and don't want to go to a hospital now. (Besides...it's a lot cheaper.) I'm still "semi-vegetative". Change that term. Don't send me back because of it.

Updated 1/25/2015

Thursday, December 18, 2014

Can't Damage Me

Updated   8/15/2016



The following video is the closest I could find to what is going on with me. The clip is of a TV program so it is made to look fantastic. I'm in real life and this is not fantastic. Time is real- sure recovery time in me is fast enough to be noticed over days, but it happens in seconds in that video clip.





The fastest in me would be a bruise. That can take a few hours to disappear. A scratch would be all day. Deeper cuts, 2-3 days. I won't stick my hand in a garbage disposal.

It's my whole body...not just this brain injury that people are so familiar with. This is how I figured it out.....I was hospitalized for pneumonia. I was used to that. This time it was bad, though.  I just happened to be at a top-notch place. They wanted to intubate me. They said I had sepsis. I refused. It was bleak and they said I was looking at a couple months. Three weeks later I was being discharged.

They took blood. Then they took more blood. I left and haven't been back. No poking and prodding at me. I knew I wasn't imagining things and something was up. I'd figure it out myself. I eventually did, http://thoughtfulveg.blogspot.com/2014/08/amazing-order-of-events.html. They didn't have all the pieces to the puzzle. I did. Some of the key information wasn't even in medical records...but it was in my head.
 
This brain injury is taking quite a while. As can be seen, I've already gone from severe to moderate. That has taken me a few years. So if those with severe brain injury think they are stuck, no this is not true. It does take years, though, and rehab programs don't last that long. You will have to be prepared to do it on your own.

Being part of my body, my head would heal, too. I've gone from severe to moderate. I've gone from not being able to communicate to doing this stuff. (If you can't read, then I can't help you.) I didn't change the word "Persistent" to "Permanent." I'm sorry I couldn't keep up with an idea of how long I should take to show awareness around my body. The e-mail I received explaining to me I'm still in a coma is the most asinine thing I've ever seen, http://thoughtfulveg.blogspot.com/2014/05/dear-vegetable.html

My body hasn't stopped responding to attempts at bettering it. People are amazed when it happens.

Is anyone recording this besides myself? This stuff is more important than what's on TV. 


 

I've opened my eyes after coding. I'd say I was sleeping.

Thursday, December 11, 2014

You Are My Sunshine

Updated 8/19/2016
              9/12/2015




/19


The Stevie Wonder song "You Are the Sunshine of My Life" came on. I was flooded with memories of singing my first song since opening my eyes after a coma. The title of that first song is similar, "You Are My Sunshine."

I knew all the words to the main verse. Everyone else just knew the first sentence. At the time I had no clue this was a sign of the neuroplasticity that was also going on inside me.

I remember singing at the nurse's station. Vocalizing didn't come from speech therapy. It came from nurses. I still had speech therapy at this time. Speech therapy would have been surprised by all the sound I was making.


You are my sunshine, my only sunshine
you make me happy, when skies are gray,
you'll never know dear, how much I love you,
please don't take my sunshine away.


Speech Therapy ended as soon as I left that place. My medical insurance ran out. The government plan picked up and any therapy stopped.

I left that place able to vocalize, so I continued the therapy on my own. I did mostly singing and reading aloud. Using my language to communicate was a natural built-in exercise. Family didn't understand why I didn't use my communication board. I think my speech turned out well.
 



 
Update   8/19/2016
Giving up the communication board is a technique in speech and special education. It would be "going it alone."