This video is where they are, and this here is where I am.
This is ridiculous.
I'm still vegetative! I don't know what to do next. I've contacted the
government, on their forms..."Regrettably, the matters you raise in your email
are not within our jurisdiction" is what one office says,
http://thoughtfulveg.blogspot.com/2013/01/regrettably-matters-you-raise-in-your.html
I made it so all could see. Contacting CMS, the Centers for Medicare & Medicaid Service, was just as bad but not so eloquently worded. I've gotten more interest from the private
sector, but I am just "followed." I guess they are waiting to see what
happens.
I
communicate, although it's said I can't. I do this by hitting one key at a
time on a computer keyboard to spell a word. It's fast enough now to be called typing with one finger. I am able to put the words
together to form sentences. The sentences
are now stories, and those are getting much longer,
http://thoughtfulveg.blogspot.com/2013/06/how-do-you-communicate.html
Writing gets better with time. I started with blinking for letters. I could only do this with my mother as the time to see if I could communicate had expired. Obviously I could communicate. I just wasn't fast enough for timelines. This is what says I can't communicate and is still being used.
I initially got speech therapy and nothing was probably expected. That speech therapist was shocked when I started making sounds. Hence though, my insurance capped out! I switched to the government and got nothing. (I was vegetative and vegetative gets nothing.) I taught myself. It has taken years to get up to this one finger. (It would go faster if I was able-bodied to give therapy and had the proper equipment. Physical therapy is affected the most.)
Writing gets better with time. I started with blinking for letters. I could only do this with my mother as the time to see if I could communicate had expired. Obviously I could communicate. I just wasn't fast enough for timelines. This is what says I can't communicate and is still being used.
I initially got speech therapy and nothing was probably expected. That speech therapist was shocked when I started making sounds. Hence though, my insurance capped out! I switched to the government and got nothing. (I was vegetative and vegetative gets nothing.) I taught myself. It has taken years to get up to this one finger. (It would go faster if I was able-bodied to give therapy and had the proper equipment. Physical therapy is affected the most.)
"Fear
of the feeding tube being
removed"...yes, I had this. Way back when I left the hospital, I set up a
Twitter account. When I was able to (at that time Twitter's cap of 140
characters was fitting), I messaged the ACLU. I still have what they
contacted me with:
- Is your question regarding the Terry Schiavo case? That wasn't something our ACLU Affiliate worked on, to my knowledge.
@ACLUFL's case. If you have a legal matter, see: http://aclunc.org/faq Followed you, so you can DM back. Looked at the brief from 2004; it was
You know it's important when they get involved. They protect my feeding tube. I still have one and will continue to have one for a while. I feel safer knowing they are there.
I don't have that fear anymore of having my feeding tube removed. When I first left the hospital, fears revolved around my physical well-being. Feeding tube, losing consciousness, and being placed in a facility were primary concerns. Concern turned to family next. I regained custody of my children. They still had high school. I lost them when they started elementary. I may not have been conscious in the eyes of the state, but the law saw differently.
Now that my children graduated it's time to set things right. I am conscious.
I do not walk, that is the most noticeable...but my posture is slowly changing. (This is now going on 11 years.)
I was just sitting up here after being bed-ridden.
Now I can independently push to a stand.
I still have a feeding tube. I do not fully swallow. Cognitive skills are amazing! I wrote this! (I earlier wrote in here that losing consciousness was a concern. Well, after all these years, I did. You know where I ended up? I went to the E.R. Everything was okay and I had a conversation with medical personnel. Medical terminology was used. Those words come easy.) The cognition needs to be studied, but I'm not conscious. A not conscious person isn't studied for cognition.
Right now, there's a very smart unconscious person writing up a storm! She doesn't really know what to do next.
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