This past week, I visited my endocrinologist. My lab results looked good. I had an A1C of 6.0 (126 mg/dl – this is the target for those with Type 1 diabetes).
An A1C blood test provides insight into a person’s average blood sugar levels over a three-month period. Anything over 7.0 (154 mg/dl) usually means a risk of diabetes. When I was diagnosed with Type 1, I had an A1C of 16.0 (420 mg/dl). The fact I hadn’t gone into complete renal failure still astounds me.
Six months ago, I switched jobs so I acquired new health insurance. And for the first time in four years, I was excited to ask for a new prescription for my test strips and insulin. I no longer had to go through Optum-Rx, a mail-delivery service, to receive 90-day supplies of my medical needs. I could finally return to the wonders of CVS.
A few days later, CVS notified me that my test strips were ready for pick up, but when I checked my online account, I saw that my insulin was listed as a “new prescription on file.” So, I called the pharmacy. Apparently to fill my order of Humalog insulin, my new insurance required I get a prior authorization from my doctor. Well, that was new. Continue reading
This past weekend, by all accounts, should have been a wonderful weekend. And in many ways, it was. I spent some quality time with cool friends, and I met some even cooler people. I finally visited the Big Apple and learned that Broadway is a street, not a place (this one may haunt me for a while).
But while I was gallivanting through New York City completely overwhelmed yet in awe of Central Park, Times Square and the darkness of the skyscrapers, others were hurting. On Sunday, I received some heartbreaking news, and out of respect for the parties involved, I will not disclose here. But needless to say, it’s the kind of news that brings someone like me to tears on the spot.
And on that same day, a woman at a gas station banged a bathroom door into my head (on accident, of course, but it hurt like hell – I still have a tender bruise). The weather was raining and overcast, and we were at the beach. Mother Nature couldn’t have been crueler (okay, I suppose a hurricane would have done it). My blood sugar levels were all over the place — from severe highs to severe lows.
Physically, I felt depleted and weak. Emotionally, I was hurting. And I was fortunate I was surrounded by such amazing people who let me process my emotions in my own time and even acknowledge that while I wanted to blame myself, I had done my best to be the most supportive friend I could be, and that was enough. When I returned to the sunny skies of DC on Monday, I received more bad news. Continue reading
Last week I wrote about the “art of practicing nothing” aka being present in the present moment. I’m sure there are folks who spend a lifetime mastering this skill, but as a recent neophyte to the practice, this is an almost impossible task to achieve. Even without my to-do lists and email/social media on my phone, I still found myself distracted by the littlest worries.
But nevermind the littlest worries. It’s hard to force myself to enjoy the “present” when I have 24/7 anxiety about my ability to survive in the coming years. And post-traumatic stress from previous failures at surviving. I read about suicides and drug overdoses on the daily, and then I read about another Type 1 diabetic dying from complications of the disease.
My life is on the line every day. I never get a day off from this disease. And sometimes it’s easiest to just ignore it so I can live my life, but then that’s when I’m most at risk. So where’s the balance? Where’s the fine line between safety and insanity? Continue reading
When I was a little girl, I loved car rides. This was before I met Motion Sickness. My family used to take vacations in the summer, and we drove to our destination whether that be the six-hour ride to Smoky Mountains or the 14-hour trek to Disney World.
My dad played Golden Oldie’s from the radio or Disney tunes on cassette. My mom would drive, my dad would film, and my brother and I would be content in the backseat. I was overwhelmed by the imagery. I loved following the different shapes and colors of the trees, watching the yellow lines on the road become one and taking in all the makes and models of other vehicles on the highway.
I could sit for hours in silence, feeling the fresh air and letting the music provide a backdrop for whatever story I dreamed up. I gave those trees a soul, and while I didn’t know who else traveled on the roads with us, I somehow felt connected to them. I used my imagination to give them their own stories. It was where my creative spirit was born.
So why, as an adult, is it so hard for me to sit back and do nothing? Why can’t I just remain still for a moment and relish the world going by? Continue reading
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
Last weekend, while thousands marched for science in DC, I met up with a longtime friend for the annual Howard County GreenFest. And while watching a documentary on the plight of migratory birds did not aid in my feelings of hopelessness and helplessness (although I highly recommend the film), meeting up with my friend gave me some perspective.
She’s the one who originally encouraged me to write about my struggles with diabetes and insurance coverage. She’s the one who introduced me to my first book producing gig and a mentor who is still having a profound impact on me post-mortem. And when I summed up the indifference I felt towards my current life, she gave me hope.
“It seems like what you need right now is to feel empowered in your daily life,” she said to me over lunch at David’s Natural Market in Columbia.
But when I feel so distraught and useless and anxious about the current political climate, how do I change circumstances outside of my control in order to feel empowered again? 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