What I Wish I Had Known When I Was Diagnosed with Diabetes
Being diagnosed with diabetes is hard, especially when you don’t know others who are living with diabetes and can support you with the types of questions you should ask or the options available to you. Meet Medtronic Diabetes Ambassador, Kris, who hid his diabetes from others for the first few years of his diagnosis like many people do. We asked Kris what he’d share with people newly diagnosed to help people acquire some knowledge on the options available, because no one should go through a diabetes diagnosis alone.
Type 1 diabetes (T1D) sucks! It is the hardest thing I’ve done in my 33-year life span. Imagine being a sprinter and you’ve just arrived at the track for your race. As soon as you enter the stadium locker room, you hear your race being called and the starting pistol going off. You rush to change your clothes, slip on your shoes, and run to the starting blocks to chase your competitors who’ve already left you in the dust. This is diabetes in a nutshell. I remember my diagnosis like it was yesterday. After I’d been feeling sick for about a month, my wife finally convinced me to go to the E.R. I left work and drove 20 miles to the nearest hospital. Once I arrived, I told the admitting nurse that I felt fatigue, nausea, thirst, and I was urinating a lot. She checked my vital signs, height, and weight and to my surprise, I had lost 25-30lbs within the last 2 weeks. I was amazed! I wasn’t dieting or exercising outside of the norm. I was escorted to a room, where I called my wife and I remember telling her how bad I felt. Another nurse came in to draw my blood and ask me more questions. A few minutes went by and a doctor came in and said Mr. Leeper, your blood sugar is 623, you have diabetes—type 1 diabetes. I was stunned!
I was told my body needed insulin and that I would have a room in the ICU. “We need to get your blood glucose level down and back in range.” I was super nervous, scared and angry. I remember thinking, “Why me?? I don’t understand. Why is this happening to me?” Every hour a nurse would knock on the door, come in and check my blood sugar and adjust my insulin in my I.V. I couldn’t rest or get any sleep.
What are the things I wish I would have known when I was first diagnosed with diabetes?
#1. There are multiple technological advances in diabetes treatments available and they’re helping people withT1D live great lives.
#2. Get a second opinion from other medical professionals, do some research, and acquire some knowledge. Ask questions—T1D is not a death sentence.
#3. You can eat the things you’ve always eaten—just learn to count carbs and check your blood sugar.
#4. Find a support group or open up about your diagnosis. This is nothing you can’t control. Type 1 diabetes is a journey, a lifestyle adjustment. It can be done, especially with the right tools and information.
After 3 days in the ICU, I was moved upstairs to a normal room. I was in my bed in disbelief. A dietitian and nurse gave instructions on what I should eat and explained to me how to check my sugar and give myself insulin via an insulin vial and needle. I was told this would be something I would do for the rest of my life. I just couldn’t wrap my head around doing this. I thought to myself, this is NOT sustainable! I remember thinking about my quality of life—how long can I keep doing this? My wife and I had many nights where we cried uncontrollably. We struggled tremendously!
It wasn’t until 2.5 years later that I felt some relief of managing T1D. My wife and I had since moved to Virginia. I started a new job with new insurance and had a new doctor. The doctor asked me on my very first appointment if I would rather use insulin pens or an insulin pump. When I heard the term insulin pump, I immediately thought the worst. This big, uncomfortable thing attached to me, not being able to be active or having this pump on me at all times looking like a fool. I opted for pens without asking for more information about a pump. A year and a half went by when my wife saw information about a pump in a waiting room one day. She saw how small it was, how the pump counted carbs and delivered insulin to help easily manage blood sugars. She came home and wanted to make me an appointment for a consultation. It was then I first saw an insulin pump and they explained to me how it works with managing type 1 diabetes. I lived with diabetes for 4 years before even seeing what a pump was. All the guesswork and needle injections were eliminated. I was able to have confidence in living with my diagnosis. Using diabetes technology has made my everyday life sustainable and easier.
What questions do I wish I would have asked my health care provider so that I could have made my journey easier sooner?
#1. Can you explain the honeymoon phase?
At one time, I thought I was cured of T1D. No matter what I did or what I ate I was either going low or my blood sugar was perfect!! Boy was I wrong! This actually triggered me to stop my pursuit and backslide a bit in my diabetes management.
#2. What are all the options to better control type 1 diabetes? What do you recommend?
Having this question answered earlier in my journey, would have helped me use a pump sooner.
#3. What is an average diet for type 1 diabetes?
I felt guilty so many times, eating dessert or extra of anything. I felt condemned, where I wish I knew about carb counting early on.
#4. Do you know of a support group or person/people living with diabetes I can speak with?
For the longest time I didn’t talk about diabetes – I didn’t want to seem weak or vulnerable. I wanted to fit in and be “normal.” Having a group of people to talk to who are going through the same thing can make a huge difference.
To acquire some knowledge and learn more, visit www.medtronicdiabetes.com/ASK
The testimonial above relates an account of an individual’s experience with a Medtronic device. The account is genuine, typical and documented. However, this individual’s experience does not provide any indication, guide, warranty or guarantee as to the response or experience other people may have using the device. The experience other individuals have with the device could be different. Experiences can and do vary. Please talk to your doctor about your condition and the risks and benefits of Medtronic devices.
IMPORTANT SAFETY INFORMATION
MINIMED™ 630G SYSTEM WITH SMARTGUARD™ TECHNOLOGY
Indicated for the continuous delivery of insulin, at set and variable rates, for the management of diabetes mellitus. MiniMed™ 630G system is approved for ages 14 years or older with Guardian™ Sensor 3 and MiniMed™ 630G system is approved for ages 16 years or older with Enlite™ sensor. Both systems require a prescription. Insulin infusion pumps and associated components of insulin infusion systems are limited to sale by or on the order of a physician and should only be used under the direction of a healthcare professional familiar with the risks of insulin pump therapy. Pump therapy is not recommended for people who are unwilling or unable to perform a minimum of four blood glucose tests per day. Pump therapy is not recommended for people who are unwilling or unable to maintain contact with their healthcare professional. Pump therapy is not recommended for people whose vision or hearing does not allow recognition of pump signals and alarms. Insulin pumps use rapid-acting insulin. If your insulin delivery is interrupted for any reason, you must be prepared to replace the missed insulin immediately. Replace the infusion set every 48–72 hours, or more frequently per your healthcare professional’s instructions. Insertion of a glucose sensor may cause bleeding or irritation at the insertion site. Consult a physician immediately if you experience significant pain or if you suspect that the site is infected. The information provided by CGM systems is intended to supplement, not replace, blood glucose information obtained using a blood glucose meter. A confirmatory fingerstick using a CONTOUR®NEXT LINK 2.4 meter is required prior to making adjustments to diabetes therapy. Always check the pump display when using a CONTOUR®NEXT LINK 2.4 meter, to ensure the glucose result shown agrees with the glucose results shown on the meter. Do not calibrate your CGM device or calculate a bolus using a result taken from an Alternative Site (palm) or a result from a control solution test. If a control solution test is out of range, please note that the result may be transmitted to your pump when in the “Always” send mode. It is not recommended to calibrate your CGM device when sensor or blood glucose values are changing rapidly, e.g., following a meal or physical exercise. The MiniMed™ 630G system is not intended to be used directly for preventing or treating hypoglycemia but to suspend insulin delivery when the user is unable to respond to the Suspend on low alarm and take measures to prevent or treat hypoglycemia themselves. Therapy to prevent or treat hypoglycemia should be administered according to the recommendations of the user’s healthcare provider.
WARNING: The SmartGuard™ Suspend on low feature will cause the pump to temporarily suspend insulin delivery for two hours when the sensor glucose reaches a set threshold. Under some conditions of use the pump can suspend again, resulting in very limited insulin delivery. Prolonged suspension can increase the risk of serious hyperglycemia, ketosis, and ketoacidosis. Before using the SmartGuard feature, it is important to read the SmartGuard™ feature information in the User Guide and discuss proper use of the feature with your healthcare provider.
See www.medtronicdiabetes.com/importantsafetyinformation and the appropriate user guides for additional important details.
Wow! Your story is so, so relatable. I am currently a 17 year old living with T1D, but I was diagnosed at 8 or 9 years old and I went thru the same thing. There were so many nights I cried myself to sleep and was so angry I had to deal with this. Living as the only one with a chronic illness in a house of 11 was isolating and embarrassing. But just like you said, after I learned the basics of how to take care of myself, I learned that T1D was not my weakness. Some of my best memories happened at diabetes camp were, for the first times, I got to meet hundreds of other kids who were just like me. We got to spend all day (and a good portion of the night! :D) checking blood sugars and, just being normal kids, and learning that T1D didn’t have to control us. Thank you for sharing your story!