Pinterest pin with book cover says "Book Review: A Light in the Darkness: A valuable and inspiring memoir from a musician with Dermatomyositis of hope & healing through creativity for spoonies.
I probably shouldn’t be writing this right now. I’m so full of rage I’m apoplectic. I need to get some of this off my chest. I feel like I’m one big raw nerve being used as a hacky-sack by a battalion of porcupines. I feel sorry for the one who makes me burst, because I’m … Continue reading Again, My World Shrinks
Right now, I feel like a sloth mired in molasses. It started with a minor bout of sinusitis and no matter what I do, I can't seem to get my butt in any gear other than the lowest of the lows right now. I feel as if you clocked me, you might find I'm moving … Continue reading Drained
Dr. Alan Pocinki discusses the Evaluation and Management of Autonomic Dysfunction in EDS in this presentation given at the 2017 Ehlers-Danlos Society Global Learning Conference held in Las Vegas. https://youtu.be/6pmv_Pt2ulY For the presentation slides, go here.
If you’ve been living with severe Postural Orthostatic Tachycardia Syndrome (POTS) for some time, you probably know it’s quite a bear to manage. Even when it’s supposedly “well controlled” with medications, there’s never a moment that you can just let go and forget about it. Try as I might, I can’t seem to get this … Continue reading POTS – Fatigue First Sign of Low Blood Volume