Happy National Rare Disease Day everyone!

We have been working night and day trying to get everything up and running for the event!

We are so excited to announce that you can now buy tickets at:

http://louandharrys11.ticketbud.com/invisibleillness

It all started as a dream.

And then the dream slowly turned into a ginormous goal.

And then the dream that had become the goal, finally became a reality this week.

1.  Medical Stuff:

• 3 Days of Home Rehab.
• I had my 6 month cleaning at the dentist.  I received a better report with the flossing.
• I had my second treatment with my cranio-sacral therapist.  I am finding that these appointments are ones that I am actually looking forward to.  Gotta love relief.

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.

So I just have to tell this story because it gets me teary-eyed every time. 


Last week when Brad and I were on the road to Cleveland to go for my autonomic nervous system testing, my Mom called to see how my day was going.  She and my Dad had been in Philly visiting Kristen, Jake, and the beautiful Cecilia Jane.  They were headed to BWI airport and we both still had a couple hours left to be in the car. At the moment she called I was struggling.  My back and head hurt, I was nervous, and I was experiencing the anxiety that a trip to Cleveland Clinic usually brings.  I was trying like heck to hold it together.  Sensing that I was near a meltdown, my Mom went into her pep talk, pick my spirits up, cheerleader mode.