I Have Issues

Going by writing you would think that I was okay. Not really. I'm healthy enough to not be in a hospital. The nursing home is next. I would most likely be there, but I know how to do the care.

Back when I was in the Master's program at SFSU, I was a weekend nightshift supervisor at a carehome for children. I had the skills. I just don't have the able body anymore. When I left the hospital from my current issue, I was starting to be vocal. A music therapist there noted that vocalness. 

 " I used to play that song on piano." I [the therapist] was shocked that she was able to speak and carry on a conversation - even though she was a little hard to understand https://thoughtfulveg.blogspot.com/2012/02/angela.html 

 I would just have to vocally relay care instructions to a caregiver. As I learned at one carehome the person I get can be a stranger with no experience. Saying my medication dosage and other things to tell a stranger were regular activities.

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This is why I should still be in a hospital or other medical facility:

I have a hole cut right into my gut giving doctors straight access to my stomach. I have a feeding tube.

This is why I'm not supposed to be home. The medical feeding tube is a lot like the ones I've seen in community care, except you can only use formula and not pureed food.

Typing requires me to sit up. Because of the hole, I'll have to recline when it hurts. 

Someday I'll get this tube taken out of my stomach like the one that was taken out of  my neck (that one was for breathing). I mostly read right now and do not respond in writing.

Feeding tubes are much treated like IVs in the community care setting. Both require nurses. A family member can do it at home, though. That's how I get around this issue. I can talk an unlicensed aide through doing the process because I am at home. Cool, huh? 
 

Aides only do cleaning, gauze change, formula prep, and turning off/on the tube. I have gravity fed, so there is no machine. My parents weren't even allowed to turn off a beeping machine in the hospital. Gravity fed just eliminates the machine altogether. No machine means no trouble.

The medical issues are handled by a local GI specialist doctor. I personally handled one emergency. Aides do not do medical care. Paramedical care is covered only by them.

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This would never happen in a hospital.
This is my granddaughter, Layla.

Babies aren't allowed and forget that the bedding is mine. 
Carehomes would be lenient with these issues.

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 Although I am home, I have lots of issues. The disabilities aren't proving permanent, though.

I don't walk. This appears to be a big concern of others. There are wheelchairs, though. That issue is slowly being accepted by society. Of more concern to me is that I can only be up in a chair for a few hours. The reason is not stamina. Stamina can be built. I need to lay down because of pain from my feeding tube.

 My bed and computer set-up.

I do not eat. I have a feeding tube. I learned to say, "I'm on a special diet" when I am at restaurants.

Not swallowing is affecting my speech. I am currently working on this area.  If I learn to swallow, I can learn to eat.

Although I am not on a ventilator anymore, I still have to be careful. I can't be around smoke. Even if an issue is resolved, I still need to be careful.