1.  Medical Stuff:

• I love finding EDS and POTS success stories.  Here is a link to one of the latest uplifting stories I found…

• Dentist appointment.  No cavities but I am too switch from using regular floss to using the floss picks so I am able to hold them with one hand.  I showed my dentist how I flossed with my hand that doesn’t have feeling and he suggested I switch to the picks so I can use my right hand only.
• 3 days of Home Rehab.
• 1 Day of PT.  On Thursday, I started using this….

My friend Ila, who also has EDS and Dysautonomia recently sent me this blog post she came across to read (If the rest of this post is going to make sense, then you should read the post from the link above first).  I read it a few times, and have thought long and hard about this person’s perspective.  I totally respect what this person has to say and her experiences with both Dysautonomia and EDS.  There are so many things she says that I found myself nodding my head in agreement to.  However, there are a few things from this post, that I would like to just bring a different perspective to.  I feel that we must keep in mind that when someone blogs, it is one person’s perspective, based on their personal and individual experiences.   


I, myself, have to realize that when I post about EDS and POTS, it is from my experiences, and my experiences only; MY symptoms, My struggles, My triumphs, and where I am on the very wide spectrum of both disorders.  I know there are going to be things I say along the way that people disagree with, but when I started this whole blogging thing, I knew that was all part of the “game.”  

Dr. Rosen asked me at my last appointment if I wished I was never diagnosed with EDS.  I was already emotional and actually got kind of angry at his question.  Without any hesitation, I snapped back that of course I wish I didn’t have EDS. 

After I left my appointment that day, it was as if Dr. Rosen’s question was haunting me.  I could not get it off of my mind.  I realized as I thought more and more about it that the answer to that question is not as black and white as I thought it was at the time.  I took that question with me to therapy.  I took it with me to Georgia.  I sent my Aunt Mada a Facebook message about it to see what her perspective was since she lives a full and active life with MS.  And then I thought about it some more. 

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.” 

1.  Medical Stuff:

• 1 day of PT
• 3 days of Home Rehab
• GI follow-up at U of M.  I am going to try and up the Domperidone to see if my symptoms improve.
• Appointment with Dr. Rosen.  Theme: Adapting my life
• Started Midodrine for POTS.