What is on your arms? It a question I thought I would get far more often than I do, I think people are afraid to ask. Kids are often bold and curious enough, but rarely adults. So, I thought since it is World Diabetes Day that I would take a pause from my typical foster/adoption blog and talk a little about the joys of diabetes.
I was diagnosed a few years ago with Type 2 diabetes. I was put on some oral medications and some background insulin and did really well for about a year and had great control of my blood sugar. Then even though I would eat well (ok sometimes eat well), my blood sugar was not well controlled and my A1C number (this is a 3 month average of your blood sugar) was too high. My doctor tried lots of different oral meds and doses, and finally after a couple years threw in the towel and said he didn’t know how to help me, go to an Endocrinologist.
So, this past January I had my first Endo appointment. She took one look at my chart and at me and said “I don’t think you have Type 2, I think you have Type 1”. Um, what? I thought Type 1 was what you got as a child. Well, turns out you can get Type 1 at any age, it is just more common in children, and also has a slower onset in adults so it can sometimes be misdiagnosed as Type 2. Up to then, I never really understood the difference. Type 1 is an autoimmune disease where you body kills all the beta cells in your pancreas that produce insulin, so you become entirely dependent on external insulin to regulate your blood sugar. Type 2 is when your body is still producing insulin but your body isn’t able to use it well, and changes in diet, exercise, weight management, oral medication, and sometimes insulin can help regulate your blood sugar.
This disease sucks. I wanted to try to sugar coat it (ok, pun intended), but I really can’t. I read somewhere that people with Type 1 make on average 200 more decisions per day that everyone else. Technology is incredible, and I have been blessed to have this disease during a time when new devices and management techniques are constantly being developed, and blessed to have pretty good insurance. But it still sucks.
How someone manages this disease is entirely a personal decision, but I have decided to use an insulin pump, a continuous glucose monitor (CGM) and a low carb diet. The bigger white device you see on my arm is my pump, called an Omnipod. I fill these with insulin and change them every 3 days and they give me constant drops of insulin. I then use a handheld device to tell it via bluetooth to give me insulin at meals to match the amount of carbs I plan to eat. The smaller grey device is my CMG, called a Dexcom, which gives me a reading of my blood sugar every 5 minutes via bluetooth to my phone and then to my apple watch. I change this every 10 days, and sometimes this has silly stickers around it because 10 days is a long time to try to keep something stuck on your body. My current sticker has sloths on it because that has been my energy level after all the excitement of adoption. My Dexcom will also send alarms and texts to some good friends who live within a couple miles of me if my blood sugar gets too far out of range.
Many people think the biggest challenges are all the needles. If you choose to use traditional blood sugar test kits and pens or syringes to deliver insulin, there are certainly a whole lot of needles. But honestly, that’s the easy part. The hardest part is trying to keep your blood sugar at a good level. Its not just carbs that affect your blood sugar. Stress, exercise, types of carbs, pump issues, poor insulin timing, etc can all have major effects. When your sugar is high or low, you don’t feel or think well, and sometimes say things to people you’ll really regret later! Getting a good nights sleep is rare, as it is common to wake up nauseous because your blood sugar is too high, or by alarms because it drops to low. Insulin and equipment are so expensive even with good insurance- I met my out of pocket max by March. I love the full body pat down at airports because I can’t go through a scanner, and the look they give me when they search my bag and pull out 50 packs of fruit snacks. Maybe what is hardest is that managing this disease is always on my mind and I never get to take a vacation from it.
There are some benefits of Type 1 Diabetes though. I have learned so much about my health and gained so much control. There is a whole online community of people who share this disease and are able to educate and also just laugh at some of the ridiculousness of it all. I enjoy sharing tips and ideas with people and just realizing how strong I can be. I also made a decision early on to not hide or be ashamed.
When I first got diagnosed, I spent a lot of time researching other Type 1’s stories and read someone’s blog which said “Diabetes will be but a footnote in my story.” I keep coming back to that line. I want to live a life where this is not the main story line. I want my story to be about how I recklessly pursued Jesus, how I had a heart for foster care and adoption, how I was a great mom, a good friend, and had witty sarcasm. Type 1 will be but a footnote.