When you are the founder of a 501(c)(3) nonprofit and your focus is on serving those with Ehlers-Danlos syndromes, Hypermobility Spectrum Disorders, and related conditions, this is how you roll to a new doc apt. And again tomorrow too … I just want the hot spots on my thighs, the millions of pins and needles that are all over that are pricking me, and the cold breeze blowing on me, to stop. Otherwise, I may lose my mind. #RealLife #AllClearDermCheck #LivingWithEDS #MCAS #EhlersDanlos #NewLocalMCASDoc #PrayingSheCanHelpTheseReactions #AlreadyWarnedAfrin #LivingWithTheTrifectaIsARollerCoaster
Sometimes you just aren’t feeling like it. Other times there’s so much going on that you have to choose sleep or to exercise. Most of this week, I opted to get sleep because how much it affects my brain cognition, my ability to drive and to get through a day of non-stop appointments, meetings, conference calls, and life. It was also my birthday this week, and I usually love to book my favorite classes back to back, just because I can, but that didn’t happen this week. It didn’t happen on my birthday either. I have been feeling very run down this week, and more than frustrated because of how I felt. I didn’t understand it. It didn’t make sense to me. I was getting sleep but felt like a train wreck when I woke up. Part of me couldn’t believe or accept that the way I was feeling was because I crammed hard for the C.H.E.S. exam last Saturday. It had been several days since I sat for the exam and it didn’t make …
Days like today are why I’m grateful that the life I live and the work I do overlap. Gratitude. Link to the autonaumic nervous system test (Ansar Testing) that I had done – http://www.tlcdiagnostics.com/patients/tests-and-procedures/ansar-testing What is autonomic dysregulation? http://www.mitoaction.org/guide/autonomic-dysregulation You can also visit www.dysautonomiainternational.org to learn more.
When it gets colder, and your hands go from red and swollen to blue and shriveled (AKA – aged appearance of the hands more commonly associated with Vascular Ehlers-Danlos, but can also be a seen with other types of EDS/Hypermobility Syndromes). Oh and you also notice a small vein rupture that apparently happened either last night or sometime this morning. The featured picture is of my left hand, but small vein rupture is on my right hand.