Halloween is a surreal holiday. It’s my favorite holiday, but it is also a reminder of how much life with an incurable chronic condition affects my perception of positive childhood memories. I’m lucky that I could grow up with trick or treating without Type 1 diabetes, but I am also cursed in that I will never relish in the same devilish appetite now that I have a disease that negates sugar.
So, it seems appropriate on this almost All Hallow’s Eve and in preparation for November — National Diabetes Awareness Month – that I should write about what it’s truly like to live a day in the life of someone with Type 1 diabetes. A few weeks ago, I took an ordinary Monday (well, as ordinary as a Monday can be) and tracked every time I thought about my diabetes – every time I checked my blood sugar, every time I calculated carbohydrates for a meal, every time I felt something was “off,” and every time I administered insulin to keep my body alive.
Even I was amazed at how much managing diabetes has become a part of my everyday life. With advancements in technology, I’m able to do more, and I’m able to have more variety in the foods I eat. But that doesn’t mean I don’t think about it any less. That doesn’t mean I can take a break from being there for my body.
So, here’s one example of one day (because no day is the same) with Type 1 diabetes (there are no days off). It’s a long one, so bear with (just keep in mind that this is really how much I think about diabetes on a daily basis – believe me, it sucks). Continue reading
Today, the Senate proposed a revised version of a new health care bill that makes me want to run for some hidden woodland area and never return. I literally had the thought that maybe it would actually be better if I killed myself than live through another four years of health coverage trauma.
Don’t worry. I’m not having suicidal thoughts, and I definitely want to see what else life has to offer. But I do worry about my well-being. A few years ago, I was focused on the planet and what we could do for the environment for the sake of public health. And while I’m still passionate about those issues, it’s hard to be focused on the Earth when I can’t even guarantee my own life’s safety. Continue reading
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
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