- Diabetes
- Interviews
Candlebrae's interview
How did all start?
When I was five- and I do mean almost exactly five- my mom noticed that I was constantly drinking water, far more than normal. We're talking asking for a glass, downing it, asking for another, and doing this until she was forced to cut me off. This combined with sudden weight loss were worrying. She brought it up during a general checkup, and the doctor told her to take me to the ER. I remember a blood test before I was admitted for a week- my blood sugar was high and my family needed to relearn how to care for me.
Do you already have a diagnosis? How long did it take you to get it?
Yes- I got it as soon as the symptoms were brought up.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have an endocrinologist to keep an eye on my diabetes.
What has been the most useful thing for you so far?
Diabetes camps. It was wonderful to be able to go somewhere as a kid where everyone was like me- now, I'm a counselor at those same camps, and help newly-diagnosed families learn to cope.
What have been your biggest difficulties?
Keeping my blood sugar under control is hard. I can eat and do the exact same things on two different days and have my blood sugar be wildly different. The only way I've found to counter this is to aggressively check and correct my blood sugar- my A1C was 6.8 last check, so I'm doing something right! Really, diabetes management is a giant self-experiment. You try things and stick with what works.
How has your social and family environment reacted? Have your social or family relationships changed?
My family really struggled at first, but now it's a part of life. Other people need it explained to them, though. I have a speech memorized to teach them what diabetes is and what to do in case of an emergency.
What things have you stopped doing?
I can't eat freely. Everything that goes into my body has to be accounted for, tallied up, and have a dose of insulin injected for it. Eating is much less pleasant when it means a complex math problem.
I also can't do heavy exercise without advance warning or my blood sugar tanks. It's very unpleasant and life-threatening, so I turn down a lot of invitations to go swimming because there was no advance notice. If I know ahead of time, I can adjust my insulin dosage to account for it.
What do you think about the future?
I'm worried about insulin prices. They're already so high, and they just keep rising. I'm scared that I won't be able to afford what keeps me alive, and there are no alternative medications, just different brands. If I can't get insulin, I will die.
That being said, I'm excited to see where technology goes. There are already a few devices on the market to help diabetics, and better ones come out every year. I hope a CGM comes out soon that doesn't feel like a rock taped to your skin to wear.
So far, which years have been the best years in your life? What have you done during them?
The most recent years have been the best. I've finally started getting control over my blood sugar, and the improvement in physical wellbeing has been mindblowing. I didn't know what I was missing out on- do non-diabetics always feel like this? Lucky.
What would you like to do if you didn’t have your condition?
Honestly? Pig out. I would love to eat without doing math.
If you had to describe your life in a sentence, what would it be?
Complicated, but worth continuing.
Finally, what advice would you give to a person in a similar situation?
If you're newly diagnosed, you're not alone. I know it feels scary and you might be confused- that's okay. Take it slow and do your best, and it'll get easier with time. You are greater than your highs and lows.
