What I’m Thinking After Five Years with Type 1 Diabetes

Today is my 5th diaversary.

In May, I was invited to be part of an adults with type 1 diabetes panel at a local JDRF event. I wasn’t the youngest person on the panel, but I’d had type 1 the shortest amount of time as I was the only one diagnosed as an adult. I was asked to share about the adjustment to life with type 1 as an adult, so I gave my abbreviated diagnosis story.

I talked about the time five years ago as a recent college grad and new wife. I listed out the symptoms I was experiencing: unquenchable thirst, peeing all the time, tired, blurry vision, weight loss, vomiting… “My husband finally convinced me to go to the doctor,” I told the audience. “And they gave me a pregnancy test.” The audience had a visible physical reaction to that statement. Everyone present knew those symptoms, knew what they meant and expected me to say that when I went to the doctor they diagnosed me with diabetes right away, the pregnancy test was a surprise to them.

As I sit here in the middle of my season of 5th year milestones, I have trouble believing that five whole years have passed. And in the next minute, it’s hard to believe that only five years have passed because it feels like a life time. There’s a lot that I’m thinking about on my 5th diaversary.

I think about the families who were promised a cure in the next five years, the ones who are still waiting for a cure decades later.

I think about my own 3 days in the hospital with DKA, the time when people only said “diabetes” and no one bothered to tell me that there was hope for a cure. I had to ask a doctor what type of diabetes I had, so I doubt that the hospital was even that tuned into what was happening in the diabetes research community… or the diabetes education community seeing as the diabetes education movie they made me watch was clearly produced in the 90s and only featured elderly people. The type 1 care kit they gave me was a green Lilly cooler with a frog on it, a pink OneTouch meter (because I’m a girl) and a card that indicated my guardian should be contacted in the case of an emergency. This is the same hospital where the dietitian treated me like I was hospitalized for an eating disorder,  the same one that failed time and time again in caring for my various family members in times of emergency. Of course my care and education were not stellar.

I also think about the people who have been in my place and yet were misdiagnosed with type 2 simply because of age and/or weight. The ones who had the proper treatment grossly delayed because of ignorance.

I think about the first person who mentioned insulin pumps to me, a gray-haired nurse who circled one of 3 tubed pumps on a page because that’s the one that the endocrinologist, whom I never saw, preferred. I remember feeling like I didn’t have a choice, or voice, in my own care. I remember that is was Brad who spent hours reading diabetes blogs while I was in the hospital and first told me about OmniPod.

I think about Brad’s coworker’s at the medical company who explained to him my diagnosis and test results when I texted him that his mother was taking me from my doctor’s office to the hospital. One of whom sent a basket home with him for me filled with low-carb snacks, a tea that was sweet without sugar (orange pekoe) and sugar-free cough drops, with notes explaining things she had learned during her pregnancy with gestational diabetes. Things that no one had told me, like cough and cold medicine have all kinds of hidden sugar. Another one of his coworkers whose partner lived with type 1 regularly asked about me and gave us helpful advice for dealing with burning Lantus shots. These are people whom I never ended up meeting, but were the first to try to help.

I think about how many times my Dexcom has literally saved my life and the fact that no medical professional ever told me about CGMs. It was the good folks in the diabetes Twitter community that first introduced me to the concept of a continuous glucose monitor.

I think about how my devices are out of warranty, that I’ve elected to wait and hope for something better, while at the same time praying nothing goes wrong because I don’t want to go back to 6+ shots per day or fight for approvals for life-saving equipment. There are exciting things on the horizon, but they still feel so incredibly far out of reach.

I think about the times that people have been ignorant and just plain rude to me because of diabetes. There are still people, some who are close to me even, who want to blame me for having diabetes and who tell me that okra water or some crazy diet will cure me and get me off of insulin.

I think about how choosing not to hide the fact that I live with diabetes has helped others feel hopeful or less alone, as well as presented opportunities to help people learn the truth about this disease.

I think about the fact that I even have a disease and the label still makes me uncomfortable.

I think about the time that we live in, one in which there is access to insulin and technology. If I had been diagnosed before 1922, a diagnosis of type 1 diabetes would have been a death sentence. If my doctor hadn’t stumbled onto a diabetes diagnosis, it would have also been a death sentence. The place where I was diagnosed also determined that I got to live with this disease, there are many around the world without access to treatment.

A lot has happened in the past 5 years, but a lot still needs to happen when it comes to diabetes.

I think about what I want for my future, and I’d really like for diabetes to not be a part of the picture.

I also think about the fact that I was supposed to take a vacation day and be at Cedar Point today with my friends, but instead I’m at the office since the weather forecast didn’t cooperate. Diabetes isn’t my whole life after all.

My pancreas has been busted long enough for my diabetes to qualify for kindergarten. If only it could be taught how to produce insulin again.