THE REAL STORIES BLOG

How Real People are Living & Learning with Diabetes
Nina, 28
Chicago
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How old were you when you were diagnosed?

I was 10 years old when I was diagnosed with Type 1 diabetes.

 

What does your daily routine involve? 

My daily diabetic routine involves getting up with my kids, because sleeping in doesn’t exist anymore, and checking my CGM to ensure I don’t need to take immediate action for my diabetes. I make the kids breakfast, stare at the oatmeal I wish I could eat, then take a few minutes to determine what food should start my day depending on my blood sugar level. This is my routine for every. single. meal. 

 

Being a mom of two toddlers throws a “Tikes” wrench into my diabetes care. I have to make sure my kids are healthy and safe but also need to make sure my health is in check so I can care for them. I believe having a CGM and insulin pump are essential in making sure I can be the mom and a wife I want to be for my family.

 

What do you wish more people understood about diabetes? 

I wish people knew the difference between type 1 and type 2 diabetes. I want people to understand that I didn’t cause this and I can have a donut if I wanted to. I wish people understood the 1,000s of medical decisions I have to make a day to keep myself alive. I wish people understood the financial strain it puts on a family. I wish people understood that a diet or exercise routine WILL NOT CURE MY DISEASE. I wish people were more caring; ask me questions but don’t assume you know my daily struggle. I may look fine, but if you were to jump in my shoes and make these decisions everyday you would know I’m far from fine.

 

What are you most proud of or most excited about?

I am most proud of the two healthy pregnancies and natural deliveries I had. I am so proud of my babies, they bring me so much love and hope on a daily basis. I thank God they chose me, even with my medical issues, to be their Mommy.

 

I am most excited about my new pump that is in the mail! My current pump is often mistaken for a 1990’s pager. My new pump has a touch screen and uses the information from my CGM to make small basal adjustments throughout the day to help keep my numbers more stable.

 

 

Tell us anything else you think is important or helpful to highlight about your experience.

I think it’s important to own your diabetes. Make it unique to you, follow instagram diabetics that inspire you. Take control of your disease, don’t let it take control of you. 

 

There are a handful of diabetic owned small businesses that produce stickers to decorate your devices, provide adhesive patches so your sites look cute, awareness pins, medical alert jewelry, and clothing. There are programs and groups that support each other and provide helpful insight to issues and solutions. Find a doctor you feel comfortable and safe with. It is 100% OK to interview numerous doctors in order to find one that fits your needs. 

 

Share your struggles with your friends and family, they are your warriors but remember they aren’t dealing with this everyday struggle and don’t fully understand the trials and tribulations that come with type 1. I have no family members who are type 1, and no close friends who are type 1. I don’t let that isolate me. I know my friends and family they love me and support me during a burnout and they want to see me succeed. 

 

I have lived with this disease for more than half my life, it’s who I am but it doesn’t define me. I’m careful not to let it hold me back but I do have to stay in check and make sure I acknowledge the disease even when I wish I didn’t have it. 

 

Don’t hide it. It’s not worth the added pain. Accept it, triumph over it, and be excited that you can still run with your kids, work with your hands, sing in the shower, walk through farmers markets, enjoy festivals, and frost cookies. It can’t hold you back from the magic of life. 

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Rachel, 23
Seattle, WA

How old were you when you were diagnosed?

I was one and a half when I was diagnosed-- an unusually early age. 

 

What does your daily routine involve?

Ever since I got a CGM (continuous glucose monitor-- a device that reads my blood sugar every five minutes or so) life has become a lot easier.  I check my CGM about once every ten minutes, and make corrections based on that using my insulin pump.  The nice thing about this CGM is that I no longer have to do finger pricks (unless it's acting wonky or something), so checking my blood sugar solely depends on that.  

 

I try to cook most of my meals-- being a big food lover, I've found it's easier for me to eat low-carb stuff that actually tastes good if I'm making it, so that plays accounts for a lot of my day.  I also try to work out at least every other day for a) my sanity and b) my blood sugar management. 

 

Mostly my life consists of reacting to what's going on, as I don't like to live a particularly routine life.  I went through a period of cooking all of my meals, never eating out, and working out almost every day, and found that while it made my diabetes management easier, I didn't feel like I was living a life that I wanted to live.  I've since began a journey trying figure out how to appropriately balance structure and flexibility in my life.  

 

What do you wish more people understood about diabetes? 

Diabetes can be quite lonely at times-- it's a disease that affects almost every aspect of your life every second of the day, but is in many ways invisible. This is tough, and can be isolating, especially when your blood sugar is out of control.  I am often exhausted, so much so that I can't get out of bed, or stay awake past 9 pm.  I'm also 23, so a lot of people interpret this as me being lame or not willing to do stuff-- this sucks because I consider myself to be quite adventurous and down to do anything. 

 

What are you most proud of or most excited about?

I just started using a software called Loop-- which is an open source (codespeak for free code) project developed by other diabetics who were tired of waiting for the FDA to approve new software. It automates a lot of the work that I have to do, and helps me sleep better, which is the thing I struggle with the most. I am so excited about the fact that other diabetics have this scrappy mindset, and am hoping to get involved (as I work in tech).  

 

Tell us anything else you think is important or helpful to highlight about your experience.

People tend to apologize when they ask me about my diabetes, but I absolutely love it.  If you ask questions it means you're interested in the answer, and learning how to empathize with something wholly different than your own experience.  Please keep asking questions, even if they make you uncomfortable!

Kelsey, 22
New York City

How old were you when you were diagnosed? 

I was 17 years old when I was diagnosed with Type 1 diabetes.

What does your daily routine involve?

I usually wake up and check my blood sugar. If my blood sugar is too high, I'll give myself some insulin. I haven't transitioned to using a pump yet so I have to use test strips to check my blood sugar about five times a day. When I was first diagnosed with Type 1 diabetes I played D1 lacrosse and the doctors suggested against a pump and monitor, but now that I am finished playing I think I will switch because I have heard it allows for a much easier lifestyle. I check my blood sugar before I eat and occasionally during the day when I feel off and adjust my insulin levels accordingly. I generally stay away from sugary drinks and try to stay away from deserts and other sweets (emphasis on the word try). While I can adjust my blood sugar with my insulin  and bring my blood sugar back to a normal range after eating high carb or sugar foods, this actually takes a toll on my body. These kinds of foods will rapidly make my blood sugar shoot up and the insulin will bring it down quickly, but the constant fluctuation like this sometimes results in headaches and exhaustion. 
 

What do you wish more people understood about diabetes? 

I feel like sometimes people confuse type 1 and type 2 diabetes. I wish more people knew that type 1 diabetes is genetic and that it manifests at different ages for different people. I also still feel self conscious about giving myself insulin in public. Sometimes people will stare because they don't know what I am doing and it would be nice not to have to explain myself or feel as though I need to hide when I give myself insulin. I have also dealt with pharmacy's refusing to give me a refill when there has been a miscommunication with my doctors or delaying the process for me to get a refill on my medicine on numerous occasions. This is extremely frustrating because at times it feels like pharmacist think of insulin as this sort of cosmetic/optional drug and they don't understand the urgency of being without insulin. It has been my experience that pharmacists either don't know or don't care that the alternative to not having insulin is a diabetic coma or death. I understand the procedural rules pharmacists must abide by, but there are certain situations where they have made obtaining my medicine unnecessarily difficult. I am fortunate to have insurance that is able to bring my copay down for insulin, but I also think people are unaware of how expensive and inaccessible this essential drug is to certain people and the detriment it has on their lives. 
 

What are you most proud of or most excited about?

I am excited that possibly at some point in my lifetime there could be a cure to type 1 diabetes. I didn't realize how much I took for granted before I was diagnosed with diabetes. I now have to think and calculate the carbs in something before I eat and monitor how my body is reacting to the food I am eating and then give myself insulin accordingly, which adds some extra time and sometimes stress in my day, so I am very excited for the day where this is no longer something I have to worry about. 

Monica, 53
Park Ridge, IL

How old were you when you were diagnosed?

I was 50 years old when I was diagnosed with Type 2 diabetes.

What does your daily routine involve?

I test my sugar level in the morning before breakfast. Because my fasting sugar level tends to be high, the only carbs I eat at breakfast come from vegetables.  I have been able to manage my diabetes with Metformin alone (no insulin), but it hasn’t always been easy. You just have to keep at it.

What do you wish more people understood about diabetes? 

Everyone should get tested regularly and take steps to prevent becoming a diabetic.

 

What are you most proud of or most excited about?

I have been riding my bike this summer and my fasting sugar level has been going down.

 

Tell us anything else you think is important or helpful to highlight about your experience.

The more you cut back on all forms of sugar, the less you crave it, and the sweeter everything tastes.

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