Month: July 2016

EDS Population Survey – Utah and Surrounding Areas

Ehlers-Danlos syndrome (EDS) is a common comorbid condition to Mast Cell Activation Disorders. For those who have been diagnosed with EDS and live in Utah or surrounding areas, please consider taking this survey. “Make your EDS voices heard! There is a medical institution in Utah that is considering opening an EDS devoted center or clinic. One of our main volunteers and personal close friend, has been asked to help collect data to convince the funding side of this potential project that there is need, that there are enough of us, and that we would show up for diagnosis and/or treatment, if a center exists. If you live in the Western US, or would be willing to travel to Utah for treatment, please take a moment to complete the following survey. Our friend collaborated in designing the survey, and has been assured that the data will be seen by those in a position of influence and decision. This information will be used to help inform what kinds of services are needed. Please feel free to share …

#Just5Minutes of Barre – The realization that I’ve seriously deconditioned

#Just5Minutes of barre thanks to Tracey Mallett Fitness’ Booty Barre workout video. BootyBarre plus arms and abs kicked my butt today. Could also be from the lovely #POTS flare I’ve been dealing with lately, but I still got through it. Lots of stops and restarts. Lots of trying to breathe deeply despite feeling seriously out of breath and my heart racing even higher after I stop moving. Barre is also low-impact which makes it more frustrating when I have a hard time keeping up. I move my leg and my heart rate skyrockets. As much as I don’t want to admit it, I’m pretty sure this flare is exacerbated by overall deconditioning that’s progressed over the last year because of working on my computer more, and moving around a lot less during the day, despite still working out and staying active. My strength sessions have also struggled, as have my consistency with going to cycling – both are two things that make a huge difference in how my body reacts to exercise and fights against “The …