When I started watching Westworld last month, I hoped the show would serve as an escape from the world that is now our reality. But the despair and rage exhibited by the hosts – from the lack of their ability to control their own destinies – started to mirror my own.
The worst day of my life was the day I was diagnosed with Type 1 diabetes. I was alone in the hospital room, isolated and cut off from connections. The thin hospital gown and sheet did little to protect me, and I was then too shy to ask for more blankets. With the IV placed in my dominant hand, I couldn’t write or work on homework like planned. I was stuck with my own thoughts and the mortality of my existence.
It’s what I imagine many patients diagnosed with COVID-19 are grappling with, as well, but on a much larger scale. And being on that high-risk list with no idea what my body will do confronted with such a virus terrifies me to the point that I feel butterflies in my stomach every time I have to go outside. Continue reading
In the 9 years since I’ve had Type 1 diabetes (T1D), it’s been amazing to see what parents of children with T1D have done to improve management of blood sugar levels. Well, I learned today that parents are now hacking into diabetes management systems and creating their own form of the artificial pancreas (at a much cheaper cost than the official FDA-approved $7,000 device).
And all of this because of a security slip-up in 2011 – when many Medtronic insulin pumps were left open to hackers and apparently do-it-yourself (DIY) parents. Some companies have now hired or consulted with those DIYers to improve products and share ideas. It’s hard to believe that I could one day owe my life to someone who had the guts to hack into an automated system and tinker.
As one parent said of parents with T1D kids, “They know their kids the best, and sometimes technology or medicine is slower and doesn’t know what we need as much as we do.”
Patient advocacy at its best. Continue reading
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
Nine years ago, this month, I was diagnosed with Type 1 diabetes. What exactly was going through my head that fateful day? I didn’t write much in those first few months getting to know my incurable chronic condition, but I did take the time to document my experience in the hospital post-diagnosis. The following excerpt would eventually inspire my book, Sugarcoated. I’ve trimmed some of the content for this blog.
Me writing in Paris a year before I found out I had Type 1 diabetes
I hear the drum of the metal cart on the tile floor, its rusted wheel curved backwards towards the slanted door. Its heavy frame makes a swishing sound when the nurse appears, and I cuddle beneath the thin scraps of my blanket. She checks my IV with a smile, and I no longer try to conceal my runaway tears. She says if I need anything to call, and she will be back in an hour to administer my long-lasting insulin injection. I hardly know what she’s saying, let alone believe that I need insulin to live. The door’s shadow disappears behind her, and once again, I’m left alone to the static television and a view of the parking lot.
I see the lights from a golf course in the distance and think of my boyfriend’s family on Easter, enamored with the flat screen television and shouting with each successful hole. I think of my boyfriend now sitting around the campfire at his aunt and uncle’s house with a good meal in his body – a meal I will potentially never feel again. He boasted about his aunt’s cooking all week, and I looked forward to a weekend with the family and then an afternoon at the Great American Ball Park with my co-worker and her boyfriend. They offered free tickets, four rows up from the dugout, and I even bought an outfit for the event (seeing as I never wore red). I packed my clothes on the way to the hospital in the hopes the doctor would discharge me by early morning.
I look at my flip phone with scratches on the screen, and I wish to see a blinking light, a sign of life, but the battery died from excessive texting. My roommate left me before I realized I had forgotten my charger. The University health center doctor set me up near his practice in Northern Kentucky so he could oversee things, but I feel so disconnected from everyone in Cincinnati. Even my boyfriend’s car could not make the drive across the river, and when my roommate left around dinnertime, I wished for morning. Continue reading
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
I love growing older – there is something about the introspection and wisdom that comes with age that very much appeals to my self-aware self.
With a chronic disease like Type 1 diabetes, getting older also means my body may not be able to manage as well after years of undue stress. The fatigue has been quite noticeable in the past year so much so that I once thought there may be something wrong with my thyroid. But my blood work continues to show positive signs (well, minus the incurable chronic condition).
But diabetes is not the only ailment I’ve had to face in the last 10 years. It’s an issue I don’t often talk about because I am somehow ashamed of its existence. It took me years to feel comfortable telling folks I had Type 1 diabetes. But diabetes, at least in today’s day and age, is somewhat understandable. And there’s scientific proof it exists.
So, what about another incurable chronic condition, that while it has a name in the scientific community, is often dismissed by health care providers because there’s no evidence the pain exists? And just like diabetes, researchers do not know where it comes from or why it exists. But it plagues more than 12 million people in the US (mostly women). Continue reading
A few years ago, I visited the National Aquarium in Baltimore, Maryland. My brother and I stood by the Blacktip Reef exhibit, and the tan and black dotted fins of the zebra shark caught my eye. It seemed to be blind, and we watched as it banged its head against the coral over and over again. Then, it would rest its belly on the bottom for minutes at a time, exhausted from its seemingly fruitless expedition. I thought it was the funniest thing to witness.
But when I turned to the information on the zebra shark, I learned that the shark does this to hunt for small fish and crustaceans hiding within the coral. It doesn’t need to swim to breathe so it rests on its belly in between hunting sessions.
Earlier today, I felt exhausted, too, from seemingly banging my head against the wall over and over again for the past seven months. I started to wonder if I was perpetually depressed due to the anxiety induced by our current political and health care climate. It was even starting to manifest itself in physical form – I’d had ongoing headaches and heartburn for weeks. 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