Being a new diabetic is challenging for all parties involved. I was nine when I was diagnosed with type one diabetes, so my parents were responsible for making sure that I was getting the correct dosages of insulin, making sure that my blood sugar was staying in the correct range, and just making sure that this life-altering change would find balance in our lives the easiest way possible. For the first year after my diagnosis, learning that balance between food, exercise, and every day life was not an easy feat. We caught on pretty quickly that even if I gave myself a shot for foods like pizza and pasta that my blood sugar would still spike. We learned that if I was going to engage in a lot of physical activity to factor that into how much insulin I was going to administer to myself, and we also learned that even doctors sometimes don’t really know what they are doing.
I just remember my first endocrinologist being nice and patient, but little did we know he didn’t really have any experience with juvenile diabetics. My a1c (average blood sugar level for the past three months) stayed in the eights for a while, and at one point it even went a little over nine. Then, about a year after I was diagnosed, I became sick. I just remember feeling extremely nauseous and out of it, and that was when I was sent to the hospital and admitted to the ICU for DKA. DKA occurs when ones blood sugar stays high for too long, causing ketones to be present in blood. I don’t really remember that much about that incident, but I do know that I went into DKA because my insulin to carb ratios were way off, and everything had to be adjusted. After spending a week in the hospital, we found a new doctor, and things started to look better.
When you are growing up as a type one diabetic, things become way more complicated. Sleepovers become hectic because you need to make sure that you have all of your supplies and that your blood sugar stays leveled, you’re in and out of the nurses office all day at school, and you are poked with needles all of the time. It is just not a typical way for a kid to grow up. But in a weird way, even though I hated doing all of those things, I used to like being diabetic when I was younger. I think it was because of the added attention that I received, it made me feel different but in a good way. If you were to ask me now if I like being diabetic it would be a different story, but back then I liked it.
A really interesting part of my diabetes journey is that I am not the only one in my immediate family to have it. Every so often my mom, step-dad, and brother would test their blood sugar just to see if they were still healthy. Then one night we tested my brothers blood, and unfortunately his sugar was high. My mom took him straight to the hospital where he was officially diagnosed with type one diabetes, and that was when things became strange. You see, my brother and I are the only ones on both sides of our family to have diabetes, and apparently that is very rare. When we were younger, we both did have staph infections, and our doctors best guess is that the infection went after the weakest organ, which happened to be our pancreases. No one will ever really know for sure if that is the true cause of our diabetes, but based on our history that is the closest scenario that they could come to an explanation.
There is a difference between being a child with type one diabetes and being an adult with type one diabetes. When I was younger, I knew that my medicine and supplies were expensive, but you really don’t understand until you are paying for everything on your own. The cost of living with diabetes is exorbitant, and every year the cost to be able to be alive just keeps going up. The first of January is my least favorite day of the year, because that is when my deductible resets and for a couple of months money is tight. I’m going to break down a small list of expenses so you can get a better understanding of the cost.
- Insulin (Humalog) – $278 every seven to ten days
- Insulin pump supplies – $500 – $800 every three months
- Endocrinologist appointments – $60 every three months
- Blood work – $450 every three to six months
- Test strips – $100 every month
How is this acceptable? I have been on diabetes forums where I have read about people who are having to choose between buying groceries and insulin. Or paying bills or buying insulin. I remember there was one woman who didn’t have a penny to her name and said that she was on her deathbed because she couldn’t afford to pay for her insulin or care. Is this the world that we live in now? Where the corporations who manufacture and sell these life saving medications are more interested in making a considerable profit rather than allowing people to live? It absolutely disgusts me, and the people who run those companies may have deeper pockets, but the price that they had to pay for those pockets came at the cost of strangers blood.
Adjusting from being a child living with type one diabetes to being an adult can an easier transition if you do it correctly. When I was about sixteen I started taking myself to my own appointments. When I was eighteen I started calling in and picking up my own insulin, and when I was twenty I started paying for my own care. You don’t realize how much work it takes to be in charge of your own well-being, but if you can have a smooth transition it makes all of the difference.
When it comes to diabetes, everyone is on their own path and journey. I have talked to so many different diabetics and we all have swapped our stories. I have spoken with people whose a1c has never been below ten, I have spoken with people who decided they hated their insulin pump and switched back to manual injections, and I have spoken with people who only see their endocrinologist one time a year. Everyone is different with how they manage their diabetes, and it is always so fascinating to be able to talk to a fellow diabetic and know that you’re not alone.
Diabetes is a journey that can be excruciating in every way possible. You can become resentful of the body that has betrayed you, and it can lead you into a negative mindset that could affect your health. Most diabetics that I have spoken with, including myself, have gone through that phase. The most important thing is to have a support system and to have an excellent endocrinologist, because those two factors will make all the difference.
For now, type one diabetes has not found a cure. But it is also not a death sentence. Acclimating to this life is challenging at first, but within time, it will become your new norm.