J went home for a few hours this afternoon. She looks exhausted and she's not going to sleep very well here. So here I am sitting in the hospital with a bunch of good matured nurses in brightly colored costumes. My roommate and I watched the film The Nightmare Before Christmas, the Tim Burton Halloween themed claymation musical.
The Soundtrack from The Nightmare Before Christmas
J came sometime after the film and I woke up surprised to see her back here. She said something about not being able to sleep, and I understand that, remembering all too well when she was on a cruise once. That was a cruise, with nothing to worry about. Well, except those pesky ships known as the Titanic and Lusitania but they were flukes, right?
Can I only imagine what life would be like if our roles were reversed the last few days? I'd be freaking out. I don't do deal well with things in my life being out of control.
The wink wink nod nod J is getting from the nurses when she asked when she must leave isn't helping my mind quiet down. She asks once and I feel it in the air like one feels the heat off a burning stove. I never thought I'd say this but I hate being alone. The only thing I hate more is not making the decision myself. Like I said, I'm a control freak in some ways. I hate having to change my routine. I hate being scared. I also hate feeling confused with a million pairs of eyes on me.
[insert here]I talked to my Neuro prior to dinner time and asked him if they were aware of this tendency of mine to be OCD. He said he had notified them of that portion of my medical condition. That's likely where I got that impression they are giving me a bit of leeway as long as I don't abuse the visiting privileges. It would make sense, as my RN's job would be easier as well. [end insert]
Oh, back to watching the film. Suddenly I started smiling broadly ear to ear, and my twenty something roommate asked what I was smiling about. I told him I was thinking of a friend of mine, Jan. Jan's daughter Keely had loved that movie. I met Jan online through Facebook's HD Community.
Last year, Keely spent her last Halloween dressed as her favorite movie character, Jack Skellington. You see, she was dying of Juvenile Huntington's Disease.
To put it in basic terms JHD is HD on steroids. I have several people who suffer from JHD on my Facebook and they are my true heroes.
Off to sleep here, I'm feeling wretched.
Please take a few minutes and educate yourself on this rare version of HD. Highlights are mine. You can learn more at the reference link at the bottom.
What is JHD?*
Juvenile Huntington’s disease is a Neurological degenerative terminal brain disease…JHD refers to Huntington’s disease that has an age of symptom onset ranging from infancy to 20years of age.
*Source "Jhdkids.com What is is JHD?"