Explaining type 1 diabetes to someone who doesn’t live with it can be a little difficult sometimes. People tend to hear the word “diabetes” and make assumptions about what it means and what it’s like to live with it.
Here’s how I explain it to people . . . .
“My oldest daughter has an autoimmune disease called type 1. For some reason, her autoimmune system attacked the cells in her body that make insulin, so now we have to monitor her blood sugar and give her insulin to help keep her body in balance.”
I generally start by saying it’s an autoimmune disease and will admit that often I refer to it as “type 1” instead of “type 1 diabetes”. The word “diabetes” has preconceived notions that go along with it and so I sometimes just leave it off.
Blood sugar levels
With T1D, we are in a position that we are constantly monitoring her blood sugar levels to try to keep her in range as often as possible. Her range is from 70-150, but her target number is 100.
If her blood sugar is too low, it can be dangerous and lead to a seizure or even death.
If her blood sugar is too high, it can lead to long term complications to her body’s other organs and systems – like her kidneys, nerves, heart, eyes …. Just about every system.
When her blood sugar is high, we give her insulin to try to bring it back down to her target number. Sometimes people think that if her numbers are high, that I can give her a shot of insulin or have her pump give her insulin and that 15 minutes later, it’s magically fixed. The reality is, sometimes it can take hours for me to get her back into range.
Insulin takes time to work and it stays in the body for hours, so we have to be careful because if we give her too much, it can make her blood sugar go too low.
It’s a lot of work and can be really difficult to keep her blood sugar in range. Since diagnosis, her average levels have been good, but we’ve seen a low of 26 and a high of over 660.
It’s important for me to to work to keep her in range as often as possible, besides the health and safety that I’ve already talked about, she just feels better when her numbers are in range. When she’s out of range, it also impacts her cognitive abilities in school or can negatively impact her ability to perform athletically.
Food vs. insulin
Simply put: food makes her blood sugar go up, while insulin makes it go down.
Some foods can have a greater impact on her blood sugar than others. It really depends on how quickly the food gets into her system. Some foods cause a fast spike, some are slower rise but stay in the system longer and others hardly make an impact at all.
We are taught to count carbs for her and that determines how much insulin she is supposed to get. The reality is, not ever carb is created equal. We’ve learned, through time and experience, that certain foods just require a lot more insulin than they “should” and sometimes she really doesn’t need extra insulin at all.
The Diabetes Diet
There’s a great deal of debate within the T1D community about what she should be eating. Some families go low carb, others do not. She doesn’t have to have “sugar free” foods. If anything, I’d rather she have regular sugar over the processed substitutes.
She’s had more juice boxes or candy after being diagnosed with T1D than she’d ever have before because if her blood sugar is low, we need to be able to impact it quickly.
We have taken the approach that we’ve always had – we try to eat a balanced diet that is heavy on whole foods. She can absolutely still eat treats, carbs and anything else, but we focus on healthy foods for everyone in the family. I’ve written before about how diabetes impacted our family’s eating habits.
She currently wears two medical devices – an insulin pump and a continuous glucose monitor.
Key things to understand about her insulin pump:
- It is giving her small doses of insulin twenty-four hours a day based on program that we have told it do run.
- We have it give her larger amounts of insulin when her blood sugar has gotten too high or when she’s going to eat.
- It has to be changed every 2-3 days.
- While we see her doctor every 3 months, we change the settings on the pump at least once a month, but generally 3-4 times a month based. Our doctor taught us how to look for patterns in her data so we could make these adjustments on our own in between appointments.
- The pump isn’t a magical “fix” for managing her blood sugar levels. While it allows us to administer the insulin differently than when she was doing shots, managing T1D can still be difficult.
We paint her insulin pump “pods” so they look a little more fun and a little less medical.
The continuous glucose monitor has a small plastic sensor that is inserted into her skin. It takes a reading of her glucose levels and sends the data to her phone, which then sends it to the cloud so my husband and I can monitor her from an app on our phones.
The glucose monitor gets changed once a week. She still needs to test her blood sugar at least twice day to calibrate the device and sometimes, she still tests multiple times per day to validate the data we see from the app because our experience or her symptoms tell us it may not be accurate.
The glucose monitor and the pump don’t talk to each other – but the companies are working on that and I am expecting that within the next year or so that the pump will make automatic adjustments based on the data from the glucose monitor.
If she didn’t wear these devices, she would need to test her blood around 6-10 times per day and get around the same number of shots per day. That’s 12-20 needles per day, every day or 4,380 – 7,300 every year.
Other things that impact her blood sugar
It seems like it should be “easy” to manage her blood sugar if all we have to do is count her carbs, but there are so many other factors that also come into play. Diatribe has compiled a list of 42 factors that impact blood glucose levels.
For us, some of the biggest factors are growth spurts and other hormonal changes, changes in the seasons or schedule, stress, anxiety and adrenaline. Activity level plays a huge role, too. Exercise can help bring her blood sugar levels down, but sometimes if she’s intensely competing, it can make her levels rise.
Honestly, I’m not sure that there is much that doesn’t impact her glucose levels.
Getting it “under control”
I don’t use the word “control” when talking about diabetes. I’m of the opinion that I can do my best to manage it, but the word control implies that I have the power to make it do what I want.
With T1D, I’ve essentially taken on the role that her pancreas used to play in regulating the insulin in her body. Taking over the role of an organ, even the pancreas, isn’t as easy as it seems like it should be. If I told you that you had to take over the role of her heart – do you think it’d be easy? If you had to anticipate how quickly the heart needed to beat while sleeping, playing or during a horror movie, you’d have times and days when you could do really well and other times that you’d look back and think, “Thank goodness we made it through that!”
Causation and Cures
T1D is an autoimmune disease and we aren’t really sure what triggered it. We have no immediate family members who have it on either side.
At this stage, there is no cure for it either. This isn’t something she can outgrow or “fix” so unless they find a cure, she will be managing the disease for the rest of her life.
How T1D Impacts Her Health
I don’t consider her to be “unhealthy” because she has T1D. Knock on wood, she’s a pretty healthy kid. She’s strong and active and we work hard to try to reduce the risk of complications.
It did take me awhile to not look at her as being “medically fragile”. When she was diagnosed and we started learning everything, I was really afraid of her having a seizure and dying.
If you want to know why a T1D parent can seem a little edgy, know that it’s in the back of my mind that this is a disease that can kill her. While I recognize the chance of that happening isn’t extremely high, the fact that there’s even a small possibility can create a great deal of anxiety. I don’t panic as often, but there are still times (especially when I’m not with her) that I freak out because her blood sugar is falling and I can’t make it stop.
This is a bit of a cyclical issue. As a pre-teen girl, she wants nothing more than to be just like her peers and to fit in. Wearing two medical devices, having scars from the needle that have penetrated her arms, legs, stomach and fingers, not being able to be as spontaneous as other kids … these are all things that impact her mental health. Diabetes sucks. It can be physically and emotionally painful and draining.
When her emotional health is struggling, it can be hard to make the best decisions about management. Poor decisions about management can impact her blood sugar. Blood sugar that is out of range can impact how she feels. Feeling poorly physically makes her also feel bad emotionally.
The reality is, sometimes we need to focus on her mental and emotional health before we worry about her blood sugar.
What can’t she do now that she has T1D
There are a lot of people who will say that T1D doesn’t prevent them from doing anything. While that’s mostly true, it’s also a bit of a misnomer, in my opinion, because she can’t just “do” things. She has to think about where her blood sugar is, where it’s going and how she needs to fuel her body before she does things like swim, run, bike or indulge in a treat at the mall.
Sometimes her blood sugar is high and she doesn’t feel well, so she’ll skip a treat because she doesn’t want the spike to push her higher.
Sometimes she can’t keep running around the yard with her friends because she has to sit and let her body recover from a low blood sugar.
Sometimes her friends will leave her behind because they don’t want to wait for her to test her blood sugar and grab a quick snack before they go for a bike ride.
We try to plan and think ahead so that her life is as uninterrupted as possible, but sometimes things don’t go the way we expect.
When it comes to a career, I don’t expect that T1D will have much of an impact. I’m not completely sure what she’ll do in life, but I suspect that she’ll be able to do whatever she wants. There are absolutely some careers that people with T1D are excluded from, but I don’t think they are careers she would have wanted to pursue anyway.
I’m not completely sure what’s in store for her in the years to come. I do hope that we will continue to see advancements in technology, in insulins and that when she’s on her own, that she has to give this a lot less headspace than I do right now. I hope I continue to learn and grow in how I manage her T1D and that I can pass that along to her.
I hope that people continue to see her as the artist and individual she is, and that they don’t try define her based on their misperceptions or misunderstandings of what T1D is.