Sunday, March 06, 2011

Keeping You Up To Speed…

I have a lot going on at once.  Since I am finally at the end of a month-long Dysautonomia flare, I am trying to play catch-up.  In addition to playing catch-up, with the help of my psychiatrist, whom I adore as a human being, I am trying to implement some activities that will help me work towards my goal of creating cash flow on my own.  I have not yet been approved for SSI or Disability, so my income is ineffectively $0.00 per hour, which stings.  And sucks. 

As I am learning to live and work around my disability, we (my psychiatrist and I) are trying to figure out how I can utilize my talents from my bed, in the lying flat position, in order to make a livable living with or without the aid of SSI/Disability.  As I’ve told her, eventually (if I am awarded money from SSI/Disability) I want to be financially independent of those systems sooner than later.  Just as a blind person, or deaf or mentally handicapped person can generate income despite their disabilities, I too feel compelled to do the same.  So our brainstorming has led to my attempting writing by voice recognition applications that I use while I’m too sick to be upright.  It’s a bit daunting, but remember how daunting text messaging used to be before QWERTY pads?  Same thing.

This morning I got an email letting me know that I’ve been accepted as the group leader of MDJunction’s Non-Familial Dysautonomia Forum.  I feel honored and excited about the endeavor, and am looking forward to advocating for Non-Familial Dysautonomia and chronic illness sufferers in general.  I’ve also been using my YouTube vlog as an advocacy tool by making my own videos and connecting with other Dysautonomia/POTS (Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia that I have) patients.

And there’s so much more, but right now I am in so much pain and need to go handle that and Sir at the same time.  One thing I will say about Sir is that I am so proud of him.  He is crazy as hell, but he’s doing such a great job in kindergarten, and I am thoroughly enjoying watching and listening to him read; which I think has been my favorite part of his kindergarten experience.  Yay for reading!  I heart books.

Be well.


*Photo--Sir’s first day of kindergarten, Fall 2010