Hello. Its been a while since I’ve written here, but I had an idea for a blog post while trying to sleep. Going to school with chronic illness can be challenging. I got sick my sophomore year of college and though I wasn’t as sick at that time it was still very hard. Somehow, unimaginably I made…
Dysautonomia was my first diagnosis in the fall of 2013 and it happened by accident. I was on a medication for depression at the time which required me to have regular EKGs. My EKG showed sinus tachycardia around 121bpm, and the health center at my school asked me to see a cardiologist. The cardiologist did…
First of all I apologize for neglecting this blog for so long, and also happy Dysautonomia Awareness Month. I will make an update post soon, but that’s not what this post is for. Last year I was diagnosed with 2 conditions called craino-cervical instability and atlanto-Ataxial instability. In laymen’s terms this describes when your top…
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…
Today is August 4th, the first week of gastroparesis awareness month. Gastroparesis literally means paralysis of the stomach, but its so much more than that. Its immediate fullness upon eating very little, bloating that looks like your pregnant, pain that keeps you up all night, and nausea + vomiting that don’t allow you to eat…
The following is the text of a speech I gave at the rally for the Americans with Disabilities Act 26th anniversary rally hosted by the National Council on Independent Living. My name is Emet Tauber and I am 21 years old. The ADA was created before my lifetime. 26 years ago, disability activists stood here…
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,…
We all know that going to the bathroom is a basic human right, and that it’s something we all do, but it matters even more when you’re disabled. Disabled people often have to use special stalls that fit their mobility devices, or have room to empty their ostomies, or change their feeding tubes. If they…
In one month, I will graduate from college with my bachelors degree. Part of me is very surprised this is even happening, even two years ago I doubted that I would graduate. Yet, as my cap and gown has been ordered and I make plans for a party, I find myself thinking about the future…
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…
In the past year and a half of my life I have met more people with feeding tubes than I ever have in my life. Lets backtrack. My life has never been surrounded by health. For the first two decades of my life I was searching for a diagnosis nowhere to be found and in…
Chronic Clarity 