What It’s Like Living With Diabetes

I met Alejandra Thompson de Jordan through a mutual friend when they came down to Tokyo for a visit. We had my favorite type of dinner – yakiniku, with lots of great conversation. Only when she had gone back to New York, I discovered she was a diabetic. I hadn’t had an inkling of an idea before that! There hadn’t seemed like there had been anything out of the ordinary when I met her: she was bright, bubbly, full of life and had just spent the day shopping with her girlfriend.

This native New Yorker, was 15, a freshman in high school when she discovered she was diabetic.

“I think I’m pretty lucky because a lot of people find out when they’re very sick or they’re in a coma. At that time, I was obsessed with classical ballet, and I would dance every night from 6pm to 10pm during the week, and all day on Saturdays and Sunday. First it was basic symptoms- losing weight even though I was eating the same amount or more, and I was very, very tired and thirsty. I think my parents really picked up on it when I didn’t want to go to dance, because I loved going to ballet. At one point, before they made the decision to take me to a doctor, I was waking up six to eight times a night to go to the restroom and to drink something because I was very thirsty.”

“If it lasts a long time, undiagnosed, you could go into a coma or go to sleep, and your parents wouldn’t be able to wake you up.”

“Type 1 diabetes, juvenile diabetes, is different from type 2 diabetes. It’s not genetic; you don’t get it from overeating or age. Your body just stops producing insulin. The only way that sugar can go from your food to your muscles is with insulin. So I would be eating and drinking, but my body wasn’t actually absorbing any of the nutrients. It would just kind of go through me, which is why I lost a lot of weight. Meanwhile, the sugar in my bloodstream was really high because my body couldn’t turn it into energy. So your limbs get really heavy, and they feel like lead, you feel really tired and your bloodstream gets really thick. It actually starts to damage your organs. If it lasts a long time, undiagnosed, you could go into a coma or go to sleep, and your parents wouldn’t be able to wake you up. You wouldn’t be dead, you’d still be breathing, but you just couldn’t function. That’s when most people end up going to the hospital, when they have an emergency, through the ambulance.

I got very lucky because my parents had some friends who were doctors and they were talking to them about my symptoms, and they took me to a family friend, Uncle Jerry, who is a type 1 diabetic and he checked my blood sugar in his house, and it was super high. He’s the one that said, you need to go to the hospital right now.”

On Alejandra’s left: Her Uncle Jerry, who diagnosed her. On her right: Her uncle who helped her practise injecting herself.

How did she feel when she was diagnosed with diabetes? What went through her head?

“My mom thinks I was in denial, but I didn’t really think anything of it. I guess I kind of felt like I was in a movie. I remember being told I had diabetes, and I didn’t know what it meant when they first told me. I remember after 24 hours of being in the hospital, I felt so much better. I had so much energy, I didn’t feel thirsty, and I just felt so good I didn’t care. The only thing that was a little bit scary was the first time I had to inject myself. They had me practice on a grapefruit first, because I guess the texture of an orange or grapefruit is similar to skin. They gave me little syringes, and I practiced on that. I was scared to inject myself, but not really scared of the diabetes for some reason. It took me an hour to inject myself the first time. I’d hold the needle, get ready, and then I’d chicken out.”

“I never asked, “Why me?””

“So, that was the scariest moment. But once I got the injection out of the way, the rest felt kind of surreal. I actually never cried when I found out I had diabetes. I never felt like I was a victim. I never asked, “Why me?” For some reason, it didn’t hit me that it would be a difficulty. It felt a bit like brushing your teeth – it’s not great, but you have to do it and you move on.”

I’m very impressed with how well she took the whole situation, and how calmly she dealt with it. She recalls what it was like in high school.

“It was pretty easy to manage it then, it didn’t really interrupt my life. I remember my parents being very worried about it, and my mom crying and calling her sisters telling them I had diabetes, and she would go, “Ale has DIAAAAAA-betes!” with this linger on the ‘Di’ and she’d just be crying. I would kind of laugh because I didn’t know what the big deal was.

Alejandra and her mother share a very close bond.

To this day, I feel almost lucky that I got it, because it gave me so much discipline. I learned at a very early age what foods are good for you and what foods are not. Once, in highschool I went to a party and drank too much, and I ended up in a hospital because my blood sugar went low. I learned very quickly that I couldn’t go out of control, it just wasn’t an option. But I never pitied myself, and I just thought, “Oh, that’s something I can’t do.” I became very mature quickly. If anything, it made me much more responsible. I got it when I was a freshman, which is probably when I would have started going to parties and, I don’t know, thinking of drugs or testing limits with alcohol, and this kind of stopped it all, because it would just have been too complicated, you know?”

Alejandra’s a great example of how someone deals with something you don’t have control over, yet with so much positivity. What was a day in her life like? Did she constantly think about her food intake and blood sugar levels?

“If I’m being a good diabetic, I’ll have a high protein breakfast, no carbs. I’ll have eggs, and that’s it.”

“Honestly, if you have type 1 diabetes, you think about it all the time. I think about my blood sugars more than anything else. If I wake up, and I have a sticky feeling in my mouth, the first thought is, oh, maybe my blood sugars are high. If I feel dizzy, uh oh, am I low? I have a little device that’s attached to my body that checks my blood sugar every five minutes. It’s called the constant glucose monitor. It links up with my cellphone, so I can check an app on my phone and it tells me what my blood sugar is in a kind of dotted line graph. It will show me 24 hours of my blood sugar, and what direction I’m going. It’s a new technology. I used to prick my finger and get 4-6 data points a day, but now I have an ongoing stream of data, so that’s very helpful.

When I wake up and my blood sugar is high, I’ll give myself an injection to try and bring it down. If It’s low, I’ll go and have a snack, or have a glucose tab. They’re medical tabs that you chew on, and they just have glucose, so they’re the fastest way to bring your blood sugar up. I carry them everywhere. I have them in my purse, a jar of them in the office, and some by my bed. I have coffee at home, usually with unsweetened almond milk or hemp milk so it doesn’t have any carbs in it. It’s basically like drinking water so I don’t have to give myself insulin. Usually, I’ll wait to get to the office to have breakfast. If I’m being a good diabetic, I’ll have a high protein breakfast, no carbs. I’ll have eggs, and that’s it. No bread, no toast. And then, honestly, this is where I could be better. If I’m in a meeting for 2 hours, I just won’t allow myself to think of it because it’s pretty distracting. During that time, my blood sugar could go low or high and I won’t pay any attention to it until I get out.

In my last job, I didn’t pay any attention to it at all. I just focused on my job. Now, in my new role, luckily it’s a little bit of a calmer environment, and I have more time to be a healthier human being. It was kind of the objective of switching jobs, so I could pay more attention to my health without feeling like I wasn’t giving 100% to my job. I was hoping to find an environment that had a slightly slower working pace. Now, it’s a lot easier to be healthier. There are tons of doctors’ appointments, and being able to get out of the office for these appointments without feeling guilty or missing a major meeting is a big help.”

Alejandra recently attended the 'Hola USA' magazine launch party.
Alejandra attending the ‘Hola USA’ magazine launch party.

To give you an idea of how many appointments Alejandra goes for, the bare minimum is 12 in a year, as she has to see her endocrinologist, her nurse practitioner, her nutritionist and also her gynecologist.

What’s the hardest part of living with diabetes?

“A couple of things. One is that you cannot turn it off, ever, not even when you’re sleeping. That can be very frustrating. My constant glucose monitor has an audible alarm if my blood sugar is high or low. At night, I can’t just go to sleep for 8 hours and forget about it. Many nights, I can be woken up at 3am because my blood sugar is high or low and I have to correct it. I have to wake up, either inject or eat a snack. That can happen once a night, or five times a night, depending. It’s just constant. Once, I was in a meeting at my previous job and my blood sugar went so low I couldn’t speak. I remember sitting there, shaking a little bit and sweating. If the meeting had lasted much longer, I probably would have had a seizure, but luckily it ended and I was able to get something to eat. So one of the biggest difficulties is that it’s every single minute of every day and night, no breaks. Oh, it’s your wedding and you want a piece of wedding cake? It’s complicated. You can’t have one drink too many, ever. You can’t forget, ever. And we’re humans. We do forget.”

Happily married to her husband, Andrew.
Happily married to her husband, Andrew.
Celebrating her 30th birthday with her husband!
Celebrating her 30th birthday with her husband.

Alejandra details what a big impact a small mistake has. A few weeks ago, she made the simple mistake of forgetting.

“I was having a great week. I’d been on top of my blood sugar, and I went to lunch with a friend. I forgot to inject, and two hours later, I felt really horrible. My blood sugar was really high, just because I forgot. And to correct a mistake like that takes a really long time. Once my blood sugar is high, I can’t just bring it down like that. I have to bring it down slowly, and it usually ends up having a rollercoaster effect, it goes high, it goes low, it will ping-pong for a while. Little thoughtless mistakes like that have a big impact.

And the other part that I find very challenging, but is a very good life lesson, is how little control we have. There’s this woman, I don’t remember her name, who’s a fitness instructor and she’s a spokesperson for diabetes. She did this test where for 30 days where she did everything exactly the same. She woke up at the same time, went to sleep at the same time, had the same amount of exercise and to the best of her ability, managed her stress as well as she could. And, every single day, her blood sugar results were different. I did a one-week test where I ate the exact same meal for breakfast, at the exact same time each day, and injected the exact same amount of insulin. I had similar results only 3 out of 7 days, not even exactly the same, but similar enough that it would be considered a pattern. What I mean to say is, the very frustrating part of diabetes is that you as an individual have to work very hard to get good results, but at the end of the day, you can’t really control them. You can do everything perfectly and you’ll still have a bad day. Those are the days when I cry, when I have really put in 150%, and you know, we’re overachievers. If I made up my mind to get A’s in school, I got A plusses, not A minuses. To have something where you put in your full effort, follow every rule, do everything “right,” and still can’t get it right is incredibly frustrating. But you can’t say, forget it, then I’m just going to eat what I want, because you’ll get sick. It’s been an amazing life lesson, and I think it’s something that I understand deeply.”

She stays constantly active. Here's Alejandra during a hike with her dad.
She stays constantly active. Here’s Alejandra during a hike with her dad.

Are there any misconceptions or misnomers about diabetes that she wished people knew about?

“So many! I don’t mind, though. I think that ignorance is bliss, and if diabetes isn’t in your life, you shouldn’t need to know about it. The only thing that bothers me personally is when people try to tell me how to take care of myself, even though they don’t really know anything about it. You know, “Oh, you should be careful,” or “You can’t do that!” or “You can’t eat that!” I know they’re saying it from a good place, and I really know they’re trying to help, so I don’t blame them. I of course would never get angry with someone for saying those comments, but sometimes it can be a little annoying because I put so much thought and effort and analysis and calculation into everything I do.

It’s a little disappointing, but it’s surprisingly difficult to find doctors who know a lot about diabetes. I search around a lot, finding a doctor that’s really an expert and who knows more than I do and who’s studying up all the latest research and the latest treatments. The industry’s moving pretty quickly, so new stuff is coming out every year. I’m very lucky now that I’ve found a couple of doctors who are great, and they’re always reading up, so they know the newest stuff and the newest research. For new diabetics who are coming into the world, I pray they find good doctors, decent doctors who guide them the right way!”

Alejandra and her mother attending the JDRF (Juvenile Diabetes Research Foundation) Gala in 2013.
Alejandra and her mother attending the JDRF (Juvenile Diabetes Research Foundation) Gala in 2013. Both her parents are very actively involved in the local chapter.

As Alejandra is very passionate in being able to play her part in creating a world without Type 1 diabetes, she has recently started a fundraiser on JDRF. If you’d like more information and would like to donate, click here!

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Ann Jie

Loves good conversations and hates small talk. Finds people fascinating and wonders why meanies exist. Loves writing violent, graphic short stories but finds horror movies too scary to watch. Follow me on Instagram @annjieslices or tweet me a slice of YOUR life at @annjieslices!

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