A little more than a week ago I had the AC on and was basking in the midday sun. I felt excited for the day even if my new social energy pushed me to physical exhaustion. Life seemed full of hope again.
Then the work week arrived. And rumors of a new health care bill surfaced — one that would destroy protections for those with pre-existing conditions. I reached out to my representative. I spent a troubling amount of time trolling Twitter and tweeting about advocacy opportunities as well as sharing my own story.
On Thursday morning, a few hours before the bill was put to a vote, I went to the bathroom and cried. I just let it all out — the anxiety of a future that goes back to a time where I had to struggle to access the supplies I needed to live; the emotional devastation of living in a country that does not support my right to live; and the empathy for all those who may die (possibly millions) as a result of this bill. Continue reading
This post is dedicated to Patricia for giving me the courage to find the words to write about a topic that goes so much deeper than just policy.
The Affordable Care Act (ACA) aka Obamacare was passed into law on March 23, 2010. On April 24, 2009, I was diagnosed with Type 1 diabetes, an incurable autoimmune disease. I must inject myself with insulin to live. Without insulin, my body goes into shock, something referred to as diabetic ketoacidosis. My organs ultimately fail, and then I die.
I was diagnosed nearly a year before the Affordable Care Act became law. I was preparing to graduate from college and start a career in psychology. I didn’t know much about the health care system in this country or the health insurance I would need to access the supplies that would help me manage this new disease. Fortunately I had started a full-time job and was able to acquire employer-sponsored health insurance.
By the time the ACA was passed, I had decided to change careers and return to school. But leaving that full-time job meant leaving behind my employer-sponsored health insurance. It would be another three years before the ACA was fully implemented. In those three years, I learned firsthand the physical, mental and financial ramifications of not being able to access the treatment I needed to manage my chronic condition.
When the ACA came into full effect on January 1, 2014, it had completely saved my life. Here are five reasons why. Continue reading
Today is World Diabetes Day, and since many people I come across often confuse Type 1 and Type 2 diabetes, I want to take this opportunity to address a few myths about Type 1 diabetes.
But before I do that, I want to reflect on the distress of this past week. I’m not much of a political activist, and I was never enthusiastic about any of the candidates this election cycle. But having come to terms with who our country just elected to represent them, I feel I need to be more vocal (at least about the issues that affect me on a personal level), and I need to be better about standing up for those whose rights are in jeopardy.
That is my personal commitment in light of these election results. I will not judge based on your vote, and I will not give into the hate that is now plaguing our country (although it was difficult not to hate the white heterosexual male this past Wednesday but that’s unfair because I know plenty of white heterosexual males who voted in my favor).
But there’s something you have to know going forward. I’ve written about it a few times on this blog but not in depth. Mostly because I don’t like to give energy to negative entities, and I don’t want to draw myself into contentious battles with fellow family members and friends. And even though I wasn’t surprised by the outcome of this election (you have to remember I grew up in a red, conservative state), I was disappointed. Continue reading
Today the FDA approved the first-ever hybrid closed loop insulin delivery system (aka the artificial pancreas). When I read JDRF’s news release I certainly felt inspired and excited for thousands of Type 1 diabetics around the world. Continue reading
As much as I love Gizmo, I’m kind of tired of my insulin pump. I know, I know, I shouldn’t complain. Having a $6,000 piece of equipment attached to me 24/7 has been an immense help in the management of my disease over the past four years.
But I am starting to understand why fellow Type 1 diabetics take a break from the pump every now and then and sometimes forever. It’s not easy having something attached to you 24/7. Right now I carry three devices around with me to manage my disease: my insulin pump (aka Gizmo), my continuous glucose monitoring receiver (aka Cosmo), and my glucometer. That doesn’t count my phone.
Gizmo is about the size of a pager. I usually conceal it clipped to my bra strap or waistline of my skirt or pants. The clip is currently taped together with duct tape, and the Medtronic label is practically worn away. I’ve had Gizmo for four and a half years. I’ve only had to replace it once when the battery container froze shut. For the most part I have no complaints.
But lately I’ve been more annoyed with Gizmo than happy. Take for example: Continue reading
Much has changed since I started this blog on September 11, 2013. My nonfiction grad school cohort can tell you how much I didn’t want to write about diabetes for my MFA thesis – the book that became the start to this blog. And in the six years since I’ve been diagnosed, I am still learning new things about myself with this disease.
I wanted to share those experiences with the world and contribute to a community of Type 1s. And maybe I wanted to prove to myself that I could manage life given this short end of the stick. What I didn’t expect when I started this blog back in 2013 was where it would take me and what kind of content my readers would inspire me to write.
I cannot tell you much I value your readership and support these past two years. You are the reason I keep this blog going. You are the reason I continue to write. And although this blog has kept me writing and contributing to this online community, I must now re-focus my priorities and take what little time I have to write to devote to other publishing opportunities. Continue reading
I walk down the cracked sidewalk along Wisconsin Avenue, past the Starbucks and Regal movie theater in Bethesda. My fingers start to tingle, and my heart rate increases. Suddenly I feel extremely weak. Each step is an effort, and I feel a steel box closing in around my heart. I am out of breath. My limbs start to shake, and my vision is less reliable. I can’t read the street sign in front of me. I stop at the next intersection and look for the glucose tablets in my purse.
I scramble to chew four of these tablets quickly, leaving a powdery residue on the tips of my fingers. I lean against the side of a brick building and call my supervisor. I’m supposed to be in a meeting in two minutes but until I get my blood sugar back up, there’s no way I’m making it back to the office without help. I’m only a five-minute walk away, but right now my vision is blurry and my hands are shaking.
My supervisor doesn’t answer his phone so I call my work colleague and let her know of the situation. I usually don’t tell people when I’m having a low blood sugar, but in this case, I realize it’s the safest thing I can do in case I do have a seizure in the middle of the street. My work colleague has severe allergies so we’ve both agreed to be each other’s medical back-up. I know where her EpiPen is, and she knows what to do if I pass out from low or high blood sugar. Continue reading