August has just begun, and already it is shaping up to be very interesting.
New “I CAN”
During the photo shoot I made a discovery that confirms to me that I am getting stronger, bit by bit. We took some photos in the pool and I was able to climb in and out of the pool without any assistance climbing the stairs! That is something that I couldn’t do only a month ago. I confirmed my new found stair climbing ability today at the therapy pool in the hospital – I CAN now climb out of that pool with only having to use one hand on the railing. Improvement, slow and steady improvement!
Tomorrow, I will be doing a live radio interview for Insider’s Health, on HealthRadio.net at 3:30pm (EST).The program will air nationally and a podcast will also be available. They want to know about little ol’ me and Pompe. More Pompe awareness!
Change of Location
I will no longer be receiving my infusions at the University of Florida. With the ATAP program coming to an end on August 20th, “regular” infusion sites were set up. Initially UF was not going to be infusing adults with Lumizyme, so the paperwork went through to have my infusions conducted at one of these new sites. After my insurance had approved the new site, I was told UF had worked something out in order to keep infusing adults. Since my paperwork had already been put in motion, I decided to give this new place a try. After all, I’ll never know if this new location will be better for me geographically unless I give it a go right? If I am unhappy at the new infusion center, I’ll be going back to UF. So, on Monday, my “regular” infusion will take place in a new location with a new team of health care professionals. I also decided to move forward with the change of venues because I feel that this is an opportunity to help educate more medical professionals about Pompe. Dr. Byrne and Lindsay Falk at UF will still be part of my health care team, and since Dr. Byrne is such a rock star in the Pompe world, that is very important to me.