When you go to sleep at night you generally expect to wake up in the morning. When you have a chronic illness like Type 1 Diabetes, you try everything you can to make sure you will wake up the next morning. You do everything right. But sometimes it’s not enough. I am thankful to have technology that helps me stay alive, but I understand that technology is not perfect and sometimes things can still go wrong. Two weeks ago I went to bed like any other night, but woke up early the next morning with an intense feeling of desperation that I know all too well. My blood sugar was dropping. Fast. I looked at my phone to check my Dexcom app and it read 74 (which wouldn’t normally give me these symptoms). I knew the reading had to be wrong so I woke my husband up and told him to get me juice FAST. He did, along with my meter so I can see how much juice I might need. My meter read 49. And I can tell I was dropping to a lower number quickly, so I drank a 2nd juice. The next 15 minutes felt like 15 hours. Heart racing, rapid breathing, physiology kicking in and telling you that you need more sugar now. But I know I must wait. It finally came back up and I woke up a couple of hours later at a completely normal blood sugar of 123. Then I thought to myself, what if that 49 didn’t wake me up? What would’ve happened to me? I clearly needed those 30 grams of carbs I drank since my blood sugar didn’t spike later. If I didn’t drink it, what would that morning have looked like for my family? Panic set in. The feelings of what if and the feelings of reality kicking in came over me. But why did my blood sugar drop so low? Why do these things happen even if you live your life by a calculator and you dose your insulin as best you can and you try so hard? Because. Diabetes. Diabetes has no rhyme or reason. Sometimes 2 + 2 does not equal 4. And sometimes you wake up before the sun because God decided that today is not that day. Today you will wake up. You will wake up before it’s too late. Today, you will survive. And two weeks later, I’m still thankful.
10 Years
A couple of days ago, on August 16th, I celebrated my 10 year anniversary of diagnosis with Type 1 (LADA) Diabetes. It sounds odd to celebrate something like a chronic, incurable disease, but after 10 years of living with it, I can say “celebrate” because I’m not dying from diabetes. I’m living despite it. I have developed a different appreciation for life that I couldn’t describe or understand when I was an otherwise healthy person. I understand how fragile life is. I no longer take for granted things like spontaneity, a carefree meal, drink, or activity, the importance of access to quality healthcare, and never ending medications and supplies for medical devices. I’m always thinking about diabetes, because it affects every decision I make every single day. As I reflect on the past decade with this disease, I remember the grieving period over being diagnosed with something that would never go away. I remember feeling like I could conquer the world when I got home from the hospital, only to have reality settle in when I realized I would have to deal with this till the day I die, and cross my fingers that I won’t have complications on the way there. I remember the ups and the downs and the feelings of “why me.” After all, I didn’t do this to myself, so why did it have to happen to me? I remember the shame I felt over having to take care of my medical needs in front of others. And the questions I had to face when I did so. I’ll never forget that first time someone asked me in a store: “why is your arm all bruised up?” when I was still learning how to give myself injections and gave myself lots of bruises. However I also remember how free I felt when I stopped caring what others thought and starting showing off everything that makes me different. I remember when the worst day in my life turned into the best when my son was born on the 6th anniversary of my diagnosis, even though he wasn’t due for another 5 weeks. I remember the excitement and the support I felt just a few months ago when I asked one of my best friends if she would photograph me with all my medical devices so I can show others that they can feel beautiful too, with all their life saving parts attached. And then, an idea was born. To share my life in the hopes that someone out there might feel less alone, and spread a little information and awareness in the process. After 10 years, I definitely still have very hard days and days I want to give up. I too get tired of the fact that I will probably never know a life without diabetes again. But every day is a new day, and a clean slate. And I don’t plan on ever giving up.
My Story
10 years ago I was only a few weeks away from having my life turned upside down and changed forever. I was only weeks away from being diagnosed with an incurable disease, one I didn’t bring upon myself, and one I knew nothing about. I was about to be diagnosed with Type 1 (LADA) Diabetes. I had been the picture of health. Perfect blood work results at every checkup, thin, and young. I was 26 years old, about to get married, and recently promoted at work. I thought I had everything under control and I thought everything was perfect.
I had all the classic symptoms but didn’t know what they meant: extreme thirst, frequent urination, and rapid unexplained weight loss (at 5 feet tall, I went from 106 lbs to 90 lbs in less than 3 months). My doctor knew right away it was diabetes when I went in with my symptoms. I went to the ER, was immediately admitted, and spent 5 days at the hospital. After that it took me 5 years to come to terms with my disease. 5 years to go through anger, denial, and grief over losing a life I had known for 26 years. 5 years to decide I was ready to start using a different form of treatment, an insulin pump. I was so resistant to this technology. I saw it as life support, I saw it as a restriction, I saw it as something I would have to conceal and be ashamed about. When I was finally ready and took the plunge, I loved it from day one. To my surprise, it was freeing, not restricting. It is life support, but I am thankful for it. However, I still felt the need to conceal it. I dreaded being asked questions about it or having people wonder why I was wearing a pager (90s folks you know what that is). I felt embarrassed that I needed something to live that other people did not. It took a long time to own it.
A few years later when I was pregnant with my son and my doctor suggested a continuous glucose monitor I went through the same feelings all over again. Another medical device? More things that will make it harder for me to pick an outfit that can conceal that too? But, I knew I had to do it so I did. My son was worth every awkward stare and every question I faced. These are tools that I use to make my life a tiny bit more normal. They keep me alive. When my son was born 5 weeks before his due date, and I later made the connection, I realized that he was born on the 6th anniversary of my diabetes diagnosis, at the same hospital I spent those first 5 days after diagnosis. That fateful day in 2007 that I thought was the worst day of my life, turned out to be the best day of my life 6 years later. Today I can finally say I not only wear my medical devices with pride, I rock them. And no matter what method of treatment you choose, know that it’s keeping you alive and you are stronger because of it. Feel comfortable with whatever makes you different. Because it makes you YOU. As Dr Seuss once said: “Today you are You, that is truer than true. There is no one alive who is Youer than You.”
This Is Type 1 Diabetes 