Type 1 diabetes advocate and spokesperson for education, change and awarenessGet their bookView their FacebookView their InstagramView their LinkedInView their Twitter
Everyone needs insulin in their bodies at all times and people with type 1 diabetes don’t make insulin.
I cannot tell you how many people are honestly shocked when I say that, by being a person with type 1 diabetes, if for any reason I lose access to insulin, I die within 2-5 days. “What if you don’t eat anything?” is a common response. “It doesn’t matter,” I tell them. Keeping it as simple as possible I say, “Everyone needs insulin in their bodies at all times and people with type 1 diabetes don’t make insulin.”
Even with all the information out there, there is still a massive misunderstanding about just what type 1 diabetes is and why there is such an urgent need for us to have insulin. Many times, the general public and even the non-diabetes medical community, are confused as to why this is true. It is not uncommon for their mindset to be that surely people with type 1 diabetes simply ate too much sugar or don’t get enough exercise. Well, tell that to a newly diagnosed 5 month old infant.
And therein lies the root of the challenge when promoting the need for better understanding and advocacy of type 1 diabetes. It is a multilayered, random, erratic, emotional, physical and financially draining condition.
On Dec. 16, 1988, I was being videotaped while hanging holiday decorations in our living room. When the phone rings, I turn to the camera and say, “I’ll get it.” The camera follows me to the landline phone and then turns off just after I say, “Hello?” It was my doctor calling me to tell me that they received my test results and that my blood sugar level was 758. “Is that good?” I asked. “No Peg. No. It’s not good. You have diabetes.”
I was instantly put on insulin until my “diabetes was stabilized” and then taken off insulin and put on diabetes medication. So, even though I had every single symptom of type 1, including a massive 32 pound weight loss in just a month, because I was a young adult and not a child, it was assumed that I had to have type 2 diabetes. I was then given a (relatively new to the market and dare I say extremely complicated) home blood glucose monitor and told to eat what I want and write down my food intake and blood glucose numbers. I watched over the next day or so as my numbers climbed back up to 400, 450 and way beyond. It was at that point that the doctor finally told me I had type 1 and would need insulin the rest of my life. And thus began Mr. Toads Wild Ride. It was all or nothing. And if I’m being honest, I had no idea what I was doing.
Knowing what I know now, I cannot believe that I survived unscathed those clueless days, much less the 758 blood sugar initial diagnosis number. But for me, it was hard, unpredictable and just plain awful. And I quickly realized that insulin both saves my life and threatens my life. Whether it’s too much or too little, every scenario could be the end. I was quietly angry, confused and isolated as there were no online resources to help me or people to reach out to so I found myself sinking within and dealing with my type 1 on my own.
Progress in Type 1 Diabetes Care
During the first few years after my diagnosis, I saw a stagnation in diabetes innovation. A few gadgets came and went but then a diabetes company released a home blood glucose meter that no longer required such extreme measures to get a blood glucose (BG) reading. It was a drop of blood (albeit a BIG drop of blood!) on a test strip, a 45 second wait and voila! A BG number. Quickly following were insulin pens, pumps, faster insulins, treatments for diabetic retinopathy and then Continuous Glucose Monitors (CGM). A side note about CGM: Even though it’s a personal choice to use innovations such as CGMs, for me, this device has changed my life in ways that I never even imagined. Actually, it has literally given back a huge piece of my time, energy and quality of life.
As a person with type 1 diabetes, I still hold on for a total cure with no devices or treatment needed. But until then, I depend on innovations to continue to improve my overall quality of life and help me stay as healthy as I can until that cure. But I would be remiss if I didn’t admit that I simply yearn for a small break from the constant attention required by my condition. I just want to think about it less and well, maybe even forget that I have type 1 diabetes….for just a little while.
On we go…..
*opinions are entirely my own
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Diasome seeks to serve people with diabetes by developing cutting-edge therapies and by serving as a forum for our community to educate and inform others about the challenges and successes in living with diabetes. We actively seek perspectives from the rich and diverse world of clinicians, scientists, thought leaders and people with diabetes. To share your unique perspective with us, email Diasome at firstname.lastname@example.org