PART 2: Diagnosis with Ehlers-Danlos Syndrome #ThisIsMyEDS How long did diagnosis/self-diagnosis take? When and how were you ultimately diagnosed? My diagnosis was almost an accident. I had a routine EKG to monitor side effects of a medication I was taking for depression at the time. My EKG showed sinus tachycardia and I was…
I was invited by Annie Lainey of youtube fame to do this tag and i’m really excited about it. My goal for this EDS awareness month is to think outside of the box. PART 1: WHAT IS EDS IS LIKE ON MY BODY #ThisIsMyEDS Introduce yourself: name, pronoun(s), and EDS type. Hi, I’m Emet, I…
So its been a while since i posted an update, so ill just kind of breeze through the last 2 months. -I went to California to see my lovely sister, and to a trans training at USC -I went to the NCIL conference in DC, and saw many of my lovely and old friends. I…
Last week, my awesome friend Maddy forwarded me an email about an event at the White House called #LGBTQDisabilityDay and asked if I would be interested in attending. So many thoughts ran into my head: Me at the WH? They have an event like this? What kind of things are happening there? And then another…
May is Ehlers Danlos Syndrome awareness month, and I think alot of posts ive seen are about what people with EDS can’t do. Well, I want to tell you about some of the things we can. Take me for instance: Last week I graduated from college. Thats so amazing! There were so many hospital visits,…
This past Thursday was Trans Day of Visibility 2016 and this years theme was #morethanvisiblity. While I agree that visibility is not enough, and hasn’t stopped the murders of Trans Woman of Color, or bills like HB2 in North Carolina, as a trans disabled person I still often feel invisible. When I look to the…
Kermit the frog says that its not easy being Green, and likewise, its not easy being rare either. Today is rare disease day and to really illustrate for you what its like to have a rare disease I want to tell you about my day today. First some information on Rare Disease Day. Rare Disease…
Two summers ago i applied for the program YP4 or Young People For. Its a youth program of the Center for American Progress which many of my young progressive friends have done. I got into the program as I knew I would, but when it came time to go to the summit it was the…
This past 10 days I went to Israel, Eretz Yisrael, on a Birthright trip. It was a very unusual trip because it was not originally designed to be accessible. Basically, Taglit-Birthright, the organization that sponsors these free trips does offer an accessible trip. However, according to multiple representatives I spoke to told me that these…
I’m sick. That’s a fact. I am sick. However, not many people seem to realize it. Ever since I started using a wheelchair a year and a half ago my illness has somehow become more invisible than it already was. I’m a full time college student and every time I go to class or a…
Chronic Clarity 