Type 1 Diabetes: More Than Just Avoiding Sugar

T1D affects everyone differently, but often the 24/7 burden of diabetes management is not fully understood. Today we’re talking with two of our very own employees here at Jumo Health about their everyday reality of living with Type 1 diabetes.

April 8, 2019

Rebecca: Hi there, and welcome to In My Words, Jumo’s podcast series that brings the experiences of real patients directly to you. At Jumo, we provide resources for children and families to understand, manage, and own their health.

Hi everyone. Thanks for tuning in today. I'm super excited to be sitting here with two members of our very own Jumo Health fam for a homegrown episode of In My Words. So I'm here with two patient experts Nichole Acosta and Erica Salerno Sebastiani. Thank you both so much for chatting with me today. So I'm super happy to have you guys here, and a little bit more fun than over a conference call or on the phone, or in a conference room like we are usually talking at work.

I'm hoping you guys can both introduce yourselves and tell everyone a little bit about who you are, what you do at Jumo and how old you were when you were both diagnosed with Type 1 diabetes. Erica?

Erica: Hey Becca. Happy to be here. So I am a senior medical writer here at Jumo. I was very recently diagnosed with Type 1 diabetes about seven months ago this past March. Prior to that, my daughter was diagnosed when she was 13 months old, about a year before that and my mom was also diagnosed a few years ago, in her 60s which is pretty rare. It's also pretty rare for all three generations of us to be diagnosed with Type 1 diabetes.

Rebecca: Yes. So you really are the expert on diabetes. Our resident expert.

Erica: The learning curve is huge but unfortunately I'm expert in many ways.

Rebecca: And Nichole?


Nichole: I was diagnosed at 18.  Here at Jumo I'm a product manager. I was in the middle of college when I was diagnosed and I'm now on a continuous glucose monitor and that's a whole new adventure for me.

Rebecca: So it's great that you both are sharing your stories, I think because, you have two distinct perspectives on Type 1 diabetes and Nichole you were diagnosed as a teenager in college which is a difficult time for anyone let alone someone who has just been diagnosed with a chronic condition.

And Erica you were diagnosed as an adult, which may seem easier from a high level point of view, for people who don't realize but you've been living your whole life a certain way and then suddenly have to start changing everything about what you do and how you manage your life, how you eat. And not only that, but manage daughter who has it and a mom. So your story is pretty kind of, unbelievable from an outsider's perspective. Tell us a little bit more Erica about when you were first introduced to diabetes so that would be I guess when your mom was diagnosed.

Erica: Yes. My mom was diagnosed probably about three years ago. Like I said she was in her 60s. She had thyroid problems so she visited an endocrinologist regularly. She was you know, losing weight,  thirsty, fatigued and she thought maybe it was due to her thyroid so she went to her endocrinologist and tested her blood sugar and surely enough it was... I don't remember exactly what it was, but it was pretty high, probably in the five hundreds.

And her experience was rather unfortunate because, her physician just all of a sudden shot her with insulin in her stomach, kind of sent her home with prescriptions and said you're a Type 1 diabetic, you have to take insulin for the rest of your life, and no additional educational information. You know she was scared. We were scared. No one else in the family has not even Type 2 diabetes, so we just really didn't know anything about diabetes.

So it was really scary and you know, a huge learning curve in the upcoming months for the whole family really.

Rebecca: Yeah. And for us here at Jumo, sending a patient away with no patient information is like such a nightmare. But especially for your mom that's so awful to hear that she was kind of in this time of need with questions and the person who was supposed to be answering those questions, didn't really do his job. So at that point, had your mom had any other kind of health issues at all that she had dealt with in the past or was this the first real kind of experience having to deal with a medical condition?

Erica: Yeah I mean she's had heart conditions her whole life and autoimmunity does run in the family. Thyroid issues, but this is the first you know very real chronic illness or just changes your whole perspective on life and you know being in her 60s she's been living her life one way and now all of a sudden you know it's just total 180.

Rebecca: Yeah. And then how long after that was Emily diagnosed her daughter?


Erica: So my mom was diagnosed before Emily was born. And Emily was 13 months, so it was probably about a year and a half or so since my mom was diagnosed. But even though we had that knowledge we didn't expect it you know from a child so young. It is more common in children, but not in a 13 month old so when her symptoms came about we didn't recognize it as diabetes until we went to the emergency room.

Rebecca: So what were those symptoms that came about when she was a baby?

Erica: She it looked like she had lost a couple pounds. I didn't really notice it as much as my husband. But then when we really start noticing it she was urinating a lot. And then for a few days she was throwing up. First we thought it was a stomach bug, took her to the pediatrician. You know he was like ah it's probably some virus. And then later that evening she was having trouble breathing. You can see in her rib cage she was like sucking in, really trying to get her air so by you know six o'clock in the morning I told my husband I says you know this is crazy.

Physicians are kind of telling us not to worry about it but my child can't breathe. So we took it to the E.R. thinking maybe she was having an asthma attack, because that runs in the family. You know they tested her glucose and they came back and they said, "Your daughter has type 1 diabetes. And you know I just like I was in total shock. I just fell to the floor. It was really hard to take in. When someone tells you that your child has a chronic illness and their life will never be the same.


Rebecca:Just from a point of reference what is a normal blood glucose reading?

Erica: Probably around 80 and hers was close to 600. But the dangerous aspect of her diagnosis was she was in what's called diabetic ketoacidosis which means her blood was basically poisoned.

Her body was trying to break down her muscle and fat for energy because her cells you know weren't able to convert glucose into energy.

So she was severely dehydrated. So we were in the hospital for about a week just trying to get her stabilized and back to normal.

And you know we got a ton of information thrown at us. Even though my mom had had diabetes and I had an idea, taking care of a child, you know now 24/7 with diabetes which is a whole new learning curve for us a lot of math and calculations and optimizing insulin regimens. It still is, because she's a toddler and it's going to be crazy for a long time.


Rebecca: So what was the immediate kind of next step after Emily was in the hospital for about a week you said and then you had to go home and start managing her diabetes. What was kind of the first order of business?


Erica: Really just optimizing how much insulin she gets every day. So there's two types of insulin. There's one that's called a basal or background insulin that kind of covers you in between meals and during the night kind of a low level insulin. And then there is what's called a bolus or fast acting insulin that you take with every meal.

You're basically mimicking what your pancreas does on a daily basis you don't realize how much your pancreas actually does for you until you have to be one. So it's really just trying to understand how much insulin she needs with her meals.

And sometimes we're still on a weekly basis, tweaking that because when kids grow and release growth hormones it's constantly fluctuating your glucose and insulin needs.

So the first order of business was to get that down and just understand even how to inject your child do fingerprints on your child who's 13 months old and want to be pricked with a needle constantly.

So that was that was a huge change for us.

Rebecca:  So I guess I don't want to jump around too much but just to back up a little bit for anyone who isn't aware of what the pancreas does. Erica being our senior medical writer, you're the perfect person to explain what a pancreas does--how glucose affects the body and what its role in the body is and kind of what the relationship between glucose and insulin is.

Erica: Sure. So glucose is found in carbohydrates a lot of people think diabetics just have to avoid sugar like candy, but there's carbs in so many foods you wouldn't even think of. And your body breaks that down into glucose and your cells use that glucose for energy to help your body run the way it should.

The pancreas is in charge of releasing insulin which is kind of the key that unlocks the cells to let the glucose in. So it's it plays a very important role in regulating the right amount of glucose in your blood.


Rebecca: OK so you had just mentioned that you were trying to regulate Emily's glucose, give her insulin all while she's becoming a toddler and kind of growing and changing her diet presumably, because she's a baby, and she can start eating certain things at certain milestones. So what worked and what didn't work in terms of managing Emily's diabetes like what would you say was a real success story and what was just what was not?

Erica: Well I think the one thing that was huge for us is when she started wearing a continuous glucose monitor.

So basically what that is you wear it directly under your skin and every five minutes it will give you a glucose read. It's not you know 100 percent replacement for finger sticks. But it gives you a pretty good idea of where your blood glucose is at. Prior to that we would prick Emily about sometimes 20 times a day including five times a night because she would crash so quickly it would change and we were just scared.


Rebecca: And would she wake up every time?


Erica: Sometimes she'd wake up; sometimes she'd go back to sleep.

When we finally got a CGM for her it was life changing because now we can just I mean we're still up all night checking on her but we don't have to prick her just kind of look at the monitor and say OK she's fine. Go back to sleep.

Rebecca: So how has it been since Emily can't talk yet right beyond a few...well she can speak minimal...

Erica: Oh she talks a lot! [Laughter]


Rebecca: Oh she talks now! But at 13 months when she was diagnosed she was probably not talking that much and she couldn't really tell you how she felt. So what was that like?

Erica: Yeah. Not being able to tell us how she feels even now that she's talking, that's why we rely so much on her glucose readings you know.

And she can get irritable, start crying a lot or be cranky, and it could be due to her being 2 years old, or because her sugar is crashing, or you know going really high so sometimes that will give us a clue and make sure we double check her.


Rebecca: OK. So now switch to you. So when were you diagnosed in this timeline of events with type 1 diabetes? How old were you and how old was Emily?


Erica: So I was diagnosed about eight months after Emily. So she about a year and a half. I was diagnosed a week before my 35th birthday which is a great present. And it's funny because even for myself I didn't make the connection immediately. It started out that it was probably about a month before my diagnosis I started noticing symptoms, my vision was blurry, but I wear glasses to see far. So I just figured oh I need glasses to watch TV now I'm getting older, but then I caught a head cold and I started getting really thirsty and you know I've just been really tired. And again I didn't know if I was tired because I'm taking care of a diabetic toddler or because something else going on. But when I was getting the extreme thirst which is one of the telltale signs, you know I decided oh let me just prick myself with Emily's meter just to rule out diabetes, because I don't want it to be that. But let me just do it. I pricked and my glucose was five something.

Rebecca: 500 something?


Erica: 500 something, and I was at my parents house, and I just showed my meter to my mom and I was like, "what should I do?" So I just went to the E.R., kind of like at that point I knew the drill. I mean a part of me just like changed inside.

You know you're not going to be the same person. You know I knew what to do though and just went to the hospital, got my insulin and here we are.

Rebecca: And so what would you say has been the biggest learning curve in yourself? So you've had the experience of a mom who has diabetes and then directly being a caretaker for a baby with diabetes. But what about for you?

Erica: I have to say it's easier to manage myself and for Emily, one reasons because as an adult you tend to have more steady periods than a toddler. I understand how I'm feeling and I know how to react to that. The hardest part is making sure I take care of myself now because you know your child is always number one. But now I really have to make sure I take care of myself because I have to take care of her. And you know it's hard because you're not really... I try to get a full night's sleep trying to eat the way I should and make sure I don't get sick. But that's that's the biggest challenge now.

Rebecca: So that must require a lot of support from everyone else in your family.


Erica: Yeah.

Rebecca: People around you.

So it seems like a 24/7 reality then, not only being a mom being is a 24/7 job, but being a mom to a baby with diabetes and also having to take yourself. So how do you do that? How do you make sure that you make time to take care of yourself?

Erica: Like you said and like Nichole says, diabetes is constant vigilance, constant glucose numbers.

My husband helps out a lot at night so we split the nights up, you know I'll get three hours of sleep. You know, he'll watch the baby and then we'll switch. It's really just making sure I exercise and eat right and kind of getting the sleep when I can.

Rebecca:  Well thank you so much for sharing that I think your story will be a nice reprieve for a lot of moms who are out there dealing with the same thing, maybe not managing themselves, but managing a baby with type 1 diabetes, and then those who are moms and dealing with type 1 diabetes themselves. So thank you.

Alright, so Nichole, a bit younger when you were diagnosed with diabetes, but also going through a challenging time of life which  presents you with a lot of change anyway like going to college, being 18 years old and leaving home for the first time . So tell us a little about that. What was that like?

Nichole: I thought I had the flu at first and all my friends were telling me that I should drink a lot of juice. So I was drinking jugs and jugs of orange juice and feeling a lot worse. I went away to college in Pennsylvania about three hours away from home in New York City, but I went home for the weekend to see my doctor who was still my pediatrician at the time because I hadn't transitioned to any other doctor yet. And as soon as he saw me he smelled my breath and it smelled like acetone like nail polish remover and that's why he sent me straight to the hospital to check my blood for diabetes. I got diagnosed there.

Rebecca: And so did you go immediately back to school or did you stay home and kind of rest up? How long did it take for you to go back?

Nichole; I was probably home for that weekend so maybe I just stayed a couple days extra in the hospital.

I had to be in my five hundreds and I didn't really eat that whole first month because I thought food got me there so I didn't know what to do.


Rebecca: So you were diagnosed with a chronic condition and then had to immediately leave the comfort of your pediatrician, and your parents, your family, and your home and go back to college three hours away and just start dealing with.

Nichole: Yep.


Rebecca: So what was that like? What was the biggest hurdle in going back and changing how you had to live your life, especially when you're kind of faced with, probably irregular menus, and food schedules ,and sleep schedules, and just schedules in general are crazy in college. What was that like?

Nichole: I had to keep a food log for everything. I didn't know how my insulin was going to affect me. I didn't know what I could and couldn't eat. And all I got when I was in the hospital was an orange to practice on to stab with the insulin needle. At the time I wasn't on pens yet.

So I kept stabbing that orange like it was the thing killing me.

Rebecca: And you mentioned that you thought that food got you there. What do you mean by that?

Nichole: I just thought it was my fault that everything I had been eating my whole life had brought me to that point.

Rebecca: So you weren't really given educational materials that told you how diabetes works, how type 1 diabetes works and what it meant, and why your body was having this reaction. So when did you learn that? Did you have to go out and do your own research or did it come to be when you got different doctors and just continued managing throughout your life?

Nichole: I don't know how I learned. I think I just really kept 20 food logs and looked at all of them and figured it out. But I was on a honeymoon period for quite a while when my body was still making some insulin so I thought, man I got it now. I figured out the math and then a body stopped making insulin completely. So I had to relearn over and over.

Rebecca: And so being in college, I mean not everyone does the exact same recreational activities in college, but were you presented with any situations where you had to drink alcohol or you wanted to drink alcohol and had to learn how to manage that in that environment?

Nichole: I remember one time it was a party and I just started throwing up and everybody thought I was drunk. Everyone. But I just ate too much pizza and they didn't understand. [Laughter]

Rebecca: And so in terms of sleep deprivation which most people probably face in college on their own accord, how did you manage kind of keeping yourself healthy and making sure that you were doing what you needed to do for you in a environment where not everyone has the easiest time of doing that?

Nichole: I think I would go to class...I would sleep for like 5 hours and then bang out a paper. That's was only way I could do it. Just sleep for a long time and then be productive.

Rebecca: In speaking with you previously we've talked about your chicken phase. Let's talk about the chicken phase.


Nichole: The chicken phase is this phase, I think all diabetics go through it. I've talked to a number of diabuddies or diabesties about this, but we think, I've got to eat all of this protein right now, I can't touch any carbs, can't touch any sugar. I'm just going to eat chicken and it's going to fix everything.

But then you go low because you don't have enough carbs. So it's really about getting a balanced diet not just eating all the protein you can.


Rebecca: And how long did it take you before you realized what was best for you and your needs?

Nichole: I just had too many lows and realized I really need to figure out how to portion my plate out correctly, so that I'm going to have enough protein and enough carbs enough insulin to cover it all. I can't eat one meal that's full carbs or eat one meal that's full of protein. I'm going to keep bouncing all over the place

Rebecca: And so when you were in college, how did you tell your friends or other people that you just met about diabetes? Did you, or was it something that you kind of get close to your chest?

Nichole: I think at first I didn't want to join one because I was still in that mindset that it was my fault. But then I got over the fear because you know, I didn't want something to happen to me. And then my friends just,  "Oh give her sugar, give her sugar!" You know, I'm not low, so I wanted my friends to know what to do in case of an emergency.

Rebecca: That's good. So it's important to have supportive friends around you at college and tell the right people so that you're always safe.


Nichole: Yeah.


Rebecca: People can act when you need them to. So you have told me in the past that at one point you kind of removed the word "can't" from your vocabulary. You have an interesting story about your 21st birthday when you were three years into your diabetes journey. So let's talk about that. 

Nichole: Yeah. I think when I first got diagnosed everybody was telling me what I can and can't eat. I knew nothing about diabetes, but they just told me you can't can't can't and I just got so sick of that word and changing it to like I just need to know how to moderate everything, not that I just can't just kick it all out of your life. And then on my 21st birthday, they... I was at a Japanese restaurant and they brought boatload of ice cream that I had to watch everyone else eat and I, couldn't.

I guess I could have figured out the insulin for it but it was just too daunting to see a whole shipload of icecream in front of me and then try to figure out the math.

Nichole: It wasn't a great memory.

Rebecca: So let's talk about that math, Erica too. I want to get, not get to the bottom of it but understand. Help me understand what kind of math goes into figuring out what you can eat and how much insulin you need to eat certain foods.

Erica: Everybody does it a little differently. Some people do it per every 15 grams of carbs you take X many units of insulin and then other people do it. The way I do is you have ratios. So for every one unit of insulin I take with a meal, I eat eight grams of carbs let's say. So you're constantly doing ratios and math and it's not always consistent. It's not like for breakfast I take this much insulin every day.

It depends on what level are you, what your blood glucose level is before you eat. Do you need to take extra insulin? Do you need to take a little extra carbs if you're low. Everything really affects the amount of insulin you need, the amount of glucose is in your blood. You know are you sick. For women a lot of times, your menstrual cycle even affects your blood glucose for children, growth hormone. So you really have to take a lot of factors for every meal into account, what types of carbs you're eating. You know is it a pasta, or you know are you eating a carrot or a banana.

Rebecca: So not all carbs are created equal.


Nichole and Erica: No. [Laughter]


Nichole: I would say while I personally might need like 20 units of insulin for a whole bagel, I might need four or five for something else that's a carb.


Rebecca: When you were both diagnosed, what was the most shocking thing to you that you learned was a carb or that had a lot of carbs in it?

Nichole: How much sauce is in everything. You know you don't think about marinades and sauces that much until you see your sugar spike.

So you analyze everything that has a sauce on it.

Rebecca: Wow.


Erica: Yeah like Nichole said ,you have to take into account every ingredient. I guess my biggest surprise were vegetables. You know there's a lot of awareness about type 2 diabetes out there and the fact that if you eat a lot of fruit and vegies, that's a healthy diet and you'll be fine, but as a type 1 diabetic, fruits have obviously a lot more carbs than veggies. But even if you just want to eat a salad you have to take insulin. There are no free days. 

Nichole: No cheat days.

Rebecca: No cheat days, but there is sugar freedom.


Nichole: Yeah.


Rebecca: So what...tell us Nichole about your mantra, sugar freedom which reigns true throughout the office, and there's a lot of sugar in the office so it is a difficult environment to be in. But, let's talk about sugar freedom and what it means.

Nichole: I mean sugar freedom doesn't mean I like sugar free candy. I think most of them taste pretty gross. But it means allowing yourself to be free enough to eat that sugar, deny people who say that you can't, you know and be able to moderate and get that sugar freedom.


Rebecca: So what else has kind of gone into you guys having some sugar freedom besides your continuous glucose monitor or any other kind of management related tools? What has helped you guys kind of manage your condition as you've gotten older and as you've progressed and continued on your journey with T1D?

Nichole: Were "diabuddies."

I like that term because you know as much as we can explain this to anyone that doesn't have diabetes it's good that we can text or call each other whenever we don't know what's going on with our blood sugars and we need some advice and support. I don't think I would be able to figure out this new adventure with the continuous glucose monitor because Dexcom doesn't have any videos about how to put it on your arm even though it works for most people on their arm, and Erica was able to teach me that.


Erica: Ya like Nichole was saying, it's really important to have someone with type 1 diabetes who understands. I mean your doctors will go by the textbook. You know even for my daughter's sake. They know what's in the textbooks. They're very smart people, but when it comes down to it they don't live it day to day. My mom helped a lot.

Even when Emily was first diagnosed with what works for her when her blood sugar drops low or high.

And then now for myself working with Nichole has been awesome. I mean even if we just need someone to listen to if you'rehaving a bad day or doing everything right, and your numbers are still off, you know it's just nice to have someone who actually understands what you're going through.


Rebecca: And so working somewhere like Jumo where we get to share those stories every day must be even more impactful for you guys because you can actually see and live the importance of that, that message.

Nichole: It's super empowering. I think that we canbe able to teach kids how to live their lives with a chronic illness. Like I didn't have those educational materials when I was in the hospital. I was totally lost. And, I think the work that we do here is super important. I wish I had that when I was 18.

Rebecca: And so do you think there are any silver linings to having been diagnosed with Type 1 diabetes?


Erica: I guess for me, it's kind of twofold.

When Emily was diagnosed it kind of forced me to leave my current position where I did a lot of traveling and was working long hours. So not only did I find Jumo which I'm a little partial, but it's an awesome company to work for and I'm really happy that I was forced to look for a new job. But it also gave me the opportunity to work from home, majority of the time and watch Emily grow up and if I was traveling working long hours I would miss those milestones. So that is some good that came out of her diagnosis and then just out of my diagnosis, even actually taking care of Emily you realize how much strength you do have and what the human body is capable of doing. It's pretty amazing.

Nichole: I don't have any more to add to that. I mean you summed it up perfectly.


Rebecca: And so, thoughts for the future. Erica it's your job basically to be researching and looking up kind of medical advancements, medical terminology, the latest and greatest for all of the conditions that we work on here at Jumo, but I'm sure you must be looking for type 1 diabetes information on the reg, daily. So what excites you about what's going on in the medical field in kind of the advancements that have been made? Just fairly recently. Seems like there have been a lot.

Erica: Yeah I mean I'm pretty hopeful at least in Emily's lifetime that there will be some kind of cure. There's something out there, called an artificial pancreas, you know, which ties things like a continuous glucose monitor with an insulin pump you know and it will kind of work as a pancreas for you--sensing what your blood glucose is, seeing how much insulin you need.

And then there's so many other cellular therapies out there being investigated. You know how to actually transplant cells into your skin that produce insulin you know different kinds of insulins are coming to market, more fast acting, smarter insulin. So type 1 diabetes even though it is very daunting. It's also very manageable if you're committed to managing it and there's constantly new tools coming out to help us do that.

Nichole: I love that artificial pancreas that you mentioned. I was looking up the hash tag OPENAPS and it's these programmers who put something on github that connects with your insulin pump and your glucose monitor, your continuous glucose monitor and acts as an artificial pancreas. And there are insulin pens now, that will measure how much insulin you just used so you can better see its impact on you, and there are times when I've forgotten, actually did I inject myself or did I not? You know, so it's great that pens can do that.

Rebecca: To end this episode, we're going to do something super awesome and exciting and amazing. For those that don't know or haven't heard Nichole, she is a spoken word poet and has written a few poems specifically about diabetes, but also just about her life in general. And so will you share one with us Nichole?

Nichole: Yeah. Sure!

So this one I wrote for Breya. She's a spoken word poet, who also went by the name of BlackBerry Molasses.

I had a chance to meet her a couple of occasions just speaking about diabetes trying to be diabuddies and that sort of thing.

But she passed away when she was 29 from complications when I was turning 29 and like ah crap like what do I do? I have to be complications myself. So this one's for her.

They say Breya Knight was the Angelou of Newark. No. Breya was Breya. She knew how to do work. As a breathing poet, she taught me how to breathe too. I'm a Type 1 diabetic writing on the ones and twos. Breya you wrote for us and now I write for you. Blackberry Molasses. I was shocked at your passing because you were so gone at the age of 29. You lived a bittersweet life. I will speak on diabetes so that it will never beat me. You might be gone, but I hope you found your sugar freedom. We will walk and we will run. We will write and raise funds till type 1 is gone. We will walk and we will run. We will write and raise funds till type 1 is gone.

Rebecca: Thanks for listening. Interested in hearing something special or want to share your story? Reach out to us. We'd love to hear from you. See you next time!

The health information provided in this podcast is provided for educational purposes only and is not intended to replace discussions with a health care provider.

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