If the world ended, and I somehow managed to be one of the few survivors in the new post-apocalyptic world, this is all I would need to manage my diabetes.
When I was diagnosed with T1D I depended on these bad boys to survive.
The world hasn’t ended. And yet this past month, I learned firsthand what life would be like without all of the technology that helps me manage this disease.
Back to Finger Pricks
First, my prescription for the wireless transmitter component of my continuous glucose monitor (CGM) expired. My health insurance company requires a letter of medical necessity, certified from my endocrinologist, every year (you know, because I may be miraculously cured in that time span). For some reason, medical supply companies and doctor offices still communicate by fax (archaic!). Fast forward three weeks from when I put in the order for a new transmitter (I documented the whole saga on social media, by the way), and my transmitter dies. 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
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
I stare at Gizmo, my insulin pump. I review its user settings, and basal and bolus rate set-up. But nothing within this gadget tells me how to change my reservoir numbers.
Yes my body is no longer producing enough insulin. And yes that means I must use more insulin to function on a daily basis. My basal rates have increased from .325 to .900, and my bolus rates have increased from 1 unit of insulin per 20 grams of carbs to 1 unit of insulin per 13 grams of carbs.
When my roommate a few years ago told me her basal rates were 1.000 unit, I scoffed and hoped I would never reach that level, at least not for another five years. But now having only had diabetes for six years I am now almost there.
The downside? I’ve been switching out my pump’s reservoir every two days. It used to be that 100 units of insulin would last me three days, if not four. And in the past month, it’s only lasted me two days. Continue reading
The other day I was replacing my insulin pump reservoir. This requires a series of steps that I will reiterate for those who have never had to replace their insulin pump supply (as a side note, manufacturers, physicians, and researchers alike recommend switching this supply every three days although I sometimes stretch mine to four).
Replacing my Insulin Pump Reservoir
The first thing one needs is an alcohol swab, reservoir, infusion set, a blue cylinder-shaped device to inject the infusion set underneath the skin, and of course the insulin and pump. So after wiping the spot on my stomach with alcohol and then the top of the insulin vial, I use the reservoir to fill the plastic insulin container with insulin from the vial (it’s important to make sure you remove all air bubbles from the plastic container). And then of course my cat knocks the vial from my desk (it’s small enough this is harmless).
I then twist the reservoir into the end of the infusion set. I rewind the insulin pump so that it knows there is zero insulin inside and can essentially start to recount my usage (I tell it I use 100 units per new supply). I place the new reservoir into the insulin pump and then fill the 23-inch thin plastic tubing of the infusion set so that I know insulin will safely travel through the cannula from the pump to underneath my skin (this usually requires 6-9 units of insulin per fill). Continue reading
“I imagine being diagnosed as an adult would be harder because you remember life without it.”
“Yeah.” I nodded at the woman to my left, mother to an 11-year-old with Type 1 diabetes (T1D).
We were both first-timers to the JDRF TypeOneNational 2015 DC Research Summit yesterday. While many parents of children with diabetes attended the day-long event, I was among some of the adults who had been managing this disease for years.
I’m about to celebrate my sixth anniversary with this disease, one year closer to a decade. It’s hard to believe I’ve been managing the disease this long – it’s even harder to believe that I have many years to go. But like speaker Tom Brobson, national director of research investment opportunities at JDRF, reminded us, if we had all been diagnosed one hundred years ago, we wouldn’t have survived a month.
I’d like to believe on the starvation diet I would have lasted a little longer, but he was right about one thing – we’ve come a long way technology-wise. And for that I am thankful. William Tamborlane, chief of pediatric endocrinology at Yale University and deputy director of the Yale Center for Clinical Investigation, familiarized us with the “blue brick,” the first insulin pump device introduced in 1979. It would take another 20 years before the insulin pump would actually take off.
And Jessica Roth, senior director of health policy at JDRF, reminded us of the importance of advocacy. It’s not enough to have all these research advances such as ViaCyte, Smart Insulin, and the artificial pancreas without the ability for people living with this disease to have access to these treatments. It still pains me that Medicare refuses to cover the continuous glucose monitoring (CGM) system for those over 65. Continue reading