All posts tagged: Medication Reactions

Living with EDS and MCAS

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

When your pharmacist hands you your script refill and tells you that one of the only two meds you take was filled with a different generic….

You end-up mass purchasing the only clothes/loungewear/PJs that does not hurt your skin because everything else feels like a razor, and only adds to the burning feeling radiating off of your body in several places. I will surely say “no thank you” next time a script is filled with a different brand of generic of a medication or supplement I take, because feeling like my veins may burst open through my skin from the horrid pressure and swelling, should be enough in and of itself. Or, the feeling of my hands and fingers being inflamed, swollen, and stiff from pain would be enough as well. And the feelings of having hot spots all over my body and that my skin is burning in places should also be enough to make me say “no thank you” next time also. Oh, and the feeling as if my skin feels is burning on the inside, yet is actually so hot to the touch on the outside also that it does seem as though I may have been burnt …