I’m supposed to be studying for an exam I have tomorrow, but I’ve thought about writing this post for a few weeks now, and now feels like the right time. When people ask me what it’s like living every day with Type 1 Diabetes, it’s hard to do anything but start my story from the beginning, so that’s what I’ll do.
In 2004, I was living a normal life; I was in the fifth grade, enjoying school, hanging out with friends, living care free, not worried one ounce about my health, because what fifth grader worries about their health if they don’t have a reason to? Probably not many. Since it was fall, I was wearing long sleeves and long pants, so it was hard to see that my body was very thin; I was basically skin and bones. My parents didn’t really start seeing a lot of my symptoms until we took a family trip to Disney World in
Florida. With the warmer weather came swim suits and tank tops. I looked like a child who hadn’t eaten in weeks. I constantly had to go to the bathroom, and when I say constantly, I’m serious. It was literally every 5 to 10 minutes. I was always really thirsty, I’d stand and drink for as long as my parents would let me at every drinking fountain I saw, and I felt like I had ‘muck’ stuck in the back of my throat (which is a symptom I still get today when my blood sugar is high). We tried to enjoy our family vacation the best we could, but my parents knew that we’d be going to the doctor the second we got home. I think it was the day after we returned home, my mom took me to urgent care to get a finger prick done. I don’t really remember a lot of the details, but I do remember the doctor saying “Type 1 diabetes”. My blood sugar level was 692; a normal, non-diabetics fasting glucose is around 60-70 depending on the person. Not really knowing what that meant, I thought ‘okay, give me some medicine and I’ll be all fixed up’. It wasn’t until he said I’d have to go to the hospital that I started crying. So, off my mom and I went to the Children’s Hospital ER in St. Paul.
Once we got to the ER, I was hooked up to an IV, and the nurses turned on The Lion King for me to watch while they talked to my parents. Again, I don’t really remember a whole lot of the ER trip because I was so young and didn’t understand the severity of what was going on. I do, however, remember how much better I felt after they got my blood sugar under control. I didn’t really realize how crappy I felt until I started to feel better. I was admitted to the hospital, and stayed there for three days, taking classes with my parents, talking to nutritionists, and learning about what my new life was going to be like. From the get-go, I wanted to be the one that took charge; I always asked the nurses if I could give myself my insulin shots and prick my fingers for my testings, and was disappointed when they said that they had to do it for me. After three days, we were sent home to try to get back to a new ‘normal’. I remember getting home, looking at my parents, and saying ‘well, now what?’ For the first few weeks after, I ate everything in sight. I would tell my parents what I wanted for breakfast (two bowls of cereal, some yogurt, and a banana) and I remember them saying there’s no way I’d eat all that. And I sure did. I ate that much for breakfast, lunch, and dinner. I was working on gaining back the 15 pounds that my already-thin body had lost before my diagnosis.
Before I get too far into my story, I should probably give some details about Type 1 Diabetes is. I know how uneducated my parents and I were prior to my diagnosis, and I think this disease is one that people are commonly uneducated or miseducated about. Type 1 Diabetes is an autoimmune disease. Long story short, my body thought my pancreas was something harmful, so my body essentially attacked and killed it, leaving it non-functioning. This left my body without a hormone called Insulin, which is responsible for regulating blood sugar levels (through a bunch of complex processes that I honestly don’t know about because they’re confusing). This is why my blood sugar was so high when my mom took me to urgent care, so high blood sugar levels are basically a dead giveaway to either type 1 or type 2 diabetes. Also, I cannot stress enough that type 1 and type 2 diabetes are two different things. I think a lot of people associate that causes of type 2 diabetes with the causes of type 1. Type 2 diabetes is generally lifestyle oriented or passed down genetically. However, with type 1 diabetes, there is no lifestyle factor that could change the chances of being diagnosed. There was absolutely no history of type 1 diabetes in my family (although it can be passed down genetically in some cases). I did absolutely nothing wrong, and doctors still don’t really know the root of what causes someone who is otherwise perfectly healthy with no family history of the disease to develop type 1 diabetes. They think that some people’s bodies have certain triggers, that, when triggered, will cause the development of the disease. Unfortunately, I was exposed to whatever my trigger was. I’ve been asked countless times if I developed this disease because I ate too much sugar or too much junk food. That couldn’t be any farther from the truth for someone with a type 1 diagnosis. Hopefully with all of the research that is constantly being done, we can find a cause and a cure. I recently found a public Facebook group of a mother whose young son is a type 1 diabetic. She is all about spreading awareness and information about type 1 diabetes. She does such a better job at explaining the complex processes that come with being a diabetic or being closely involved with caring for a diabetic, so I’ll put the link to that page here.
So I guess back to what I titled this post.. what is it like living with Type 1 Diabetes? Honestly, the first word that comes to me is ‘scary’. There’s not a lot of things that could put more pressure on a person than taking on the balancing act of giving the right amount of insulin for food eaten, giving the right amount of insulin for corrections (extra insulin given for high blood sugar readings) and eating enough of a snack to raise a low blood sugar, making sure that it’ll raise the blood sugar, but not too much. It’s such a complicated disease to try and manage, I can’t even begin to tell you. Technology is amazing and makes my job so much easier, but I can also tell you that it’s an exhausting and sometimes very overwhelming feat. Sometimes there’s days where I get so angry, asking ‘why me? why was I given this disease to have to deal with every day for (potentially) the rest of my life?’ Now, obviously I’m very hopeful that there will be a cure within my lifetime, but as of now, this is what I will live with forever. It’s hard to read in textbooks the possible and quite likely effects that come from being a type 1 diabetic, even with very good care. Some of these include losing my eyesight, having pain in my hands and feet with possible amputations, nerve damage, poor blood circulation, and various skin problems to name a few. It’s something that most twenty-something’s don’t have to worry about. This disease is relentless. It is always changing, I am always needed different amounts of insulin, certain emotions will always effect my blood sugar levels, none of it ever stops. The only ‘break’ I get is when I sleep, and even then my pump alarms at me overnight sometimes. I am envious every day of everyone who doesn’t have to monitor every single thing they put in their mouth, who doesn’t have to worry about dropping low so quickly and becoming unconscious, who gets to live their life and not have to think about all of the things that I, and every other person with type 1 diabetes, does. I am envious of that. From what it seems, everything about this disease is negative. It’s certainly not fun, but there’s a lot that I’ve learned. I have learned so many things about the disease, and so many things beyond that as well. I’ve learned that I can be thrown one of the biggest hurdles you can get at the age of 10, and move forward with my life. I can learn to adapt, learn to change, and learn to manage things even when they get hard. This disease proved the fact that my parents’ love for me is endless (not that I ever had any doubts about that). They toted me to countless doctors appointments, cared for me when my blood sugars got dangerously high when I was sick, held my hand as I got my first set of blood work done (and then proceeded to pass out, then throw up after I woke up.. sorry dad!). They’re seen my cry at so many appointments, wishing I could just get everything right. They’re supported me and encouraged me to do better when my doctor appointments didn’t go as well as I hoped. They’ve rejoiced with me when I got a newer, better pump, when I got my CGM (continuous glucose monitor), and when it felt like we had control over this disease. I could have done nothing without the support of them, and it’s something I will always be thankful for. This disease may never cease, may always be within my body, it may have won and destroyed my pancreas, but it will never win over my emotions. I will never let this disease rob me of my happiness, of enjoying life, of moving forward as normally as I can. Is there even a ‘normal’ to anyone? Everyone has struggles, everyone has hardships, and this just happens to be one of mine.
I encourage you all to do your research about type 1 and type 2 diabetes if it interests you. The American Diabetes Association website is here, and there are countless other websites that will give you the in’s and out’s of the disease.
So, that’s all, folks, until next time.