Inspire (http://corp.inspire.com) is a Princeton, NJ-based company that builds online peer-to-peer communities for patients and caregivers, in partnership with national patient advocacy organizations, and helps life science organizations connect with these highly engaged populations. Find us on Twitter at https://twitter.com/teaminspire.
Friends and family have some very kind comments to me lately both in person and about a new Facebook photo, saying how I look so good, I must be feeling better! And it’s true that when I’m out with friends on campus or in photos (which I avoid unless I’m alive-looking), I do look healthy.
So I wanted to show you what I look like the day after this pretty picture is taken. I want to show you a flare face. Uncensored. No hiding.
This is the face of chronic, rare, systemic disease:
Patient advocate Kelly Wong, of the blog Float Like a Buttahfly, writes about living with chronic and invisible illnesses. #Spoonie #InvisibleIllness #ChronicIllness #SpoonieStrong http://floatlikeabuttahfly.blogspot.com/
Patient advocate Rachel Doucette, co-founder of SCAD Alliance, a new nonprofit organization dedicated to helping people affected by spontaneous coronary artery dissection (SCAD). http://medivizor.com/blog/2014/04/15/scad-heart/ #SCADHeart #RareDisease #WomenHeart #HeartDisease
First dose of prednisone. Starting at 10mg and hopefully this will do the trick if not I’ll take 20mg tomorrow if that doesn’t work 30mg the next day and then step my way backdown from there. I have had a mild reaction to prednisone a decade ago so my doctor also sent me home with anti-nausea meds to combat my reaction should it happen again. I will get out of this flare!! Theory is it was intensified by the vaccines I got yesterday. I’m to call my rheumy if I’m not improving by the end of the day tomorrow or first thing Thursday. #lupus #lupusflare #lupusproblems #lupie #invisibleillness #butyoudotlooksick #prednisone #steriods #chronicillness #spoonie #antiphospholipidsyndrome #hughessyndrome