As you can see, I did not write the piece below.  I wanted to post it though, because I find it to be a brilliant description of learning to live life with a chronic illness. 

Each time I read the following piece, I think about my specialists (especially Dr. Grubb and Dr. Lavallee) who are encouraging me to tame my gorilla.

Whether or not this will prove factual, as more studies are completed, it is awfully exciting to me.  I have to say that a lot of what she says makes sense.  Thank you, Dr. Driscoll for your hard work and continued advocacy!

Here is the tentative schedule for the EDS conference in Baltimore on July 21-23.  Hopefully handouts from sessions will be able to be downloaded and printed, since I do not think it is in the cards for me this year.  It looks like a lot of good info is being presented, and Dr. Grubb is even presenting about POTS.  I will definitely shoot for next year’s conference!

I know this is long, but if you have a chance to watch it, please do.  It just might help someone.  As I watched, I could not get over all of the the similarities between her story and mine.  I laughed when she said “Why not me” because that is what I say too.  Awareness, awareness, awareness.  I can’t say it enough. 

I had my monthly Larry appointment today.  At my April appointment, Larry graded my Apollo 13 homework assignment he had given me after I spent my March appointment with him in serious meltdown mode tears about life in general.  After I received my A++, Larry gave me another assignment, which was due today.  My assignment was to show some kind of scale that represented things I COULD do on a 0%, 25%, 50%, 75%, and 100% energy day. 

This assignment was meant to help me reframe my thoughts.  So instead of getting upset and saying something like, “Oh my goodness, it’s a 25% energy day and I can’t dust the house,” I could instead look at it as, “It may be a 25% energy day but I CAN do a load of laundry, some floor exercises, and post on my blog.”