The content below is provided by Kristie Lambert, MSN, APRN

Kristie Lambert is an Adult Nurse Practitioner who specializes in Endocrinology. She completed her Bachelor of Science in Nursing at the University of Toledo and then earned her Master’s of Science in Nursing at the University of Akron. She has a passion for diabetes and has been working in this field since 2011.

In her spare time she enjoys reading, boating and spending time with family and her dog CJ.

Diabetic Perspectives: Holly’s Story

There are technical aspects of diabetic managment, from medication to blood sugar monitoring and then there is the human side, the personal side. Diabetes affects the person, not just their blood sugars. From frustration to triumph, and back again, each person living with diabetes has learned a thing or too along the way and that is a story worth sharing.

I sat down with Holly Burch, a seasoned Type 1 diabetic, who has been living with diabetes for over 35 years, to find out what this diabetic journey has been like for her and what she has learned. 

Diagnosis:

Anyone can get a diagnosis of diabetes at any time, at any age. Some are diagnosed so young that they never know anything different. They don’t know what it’s like to not have to think about what they are eating, what they are doing and how it will impact their blood sugars. Others have tasted (literally) the freedom of being able to eat what they want, when they want, be as active as they want, without a second thought, and then one day all of that changes. Those carefree days are gone, nothing but a memory, now they are faced with a new reality, new challenges and a new way of life. 

Holly was diagnosed in 1985 at the age of 15. An age where you are old enough to have tasted that freedom, to know what it is like to not have to be tied down by blood sugars and everything that goes along with it.  An age where friendships are becoming more important, where you don’t necessarily want to stand out, especially for having diabetes, you want to fit in. 

She had all the hallmark symptoms that she tried to explain away. Extreme thirst, frequent urination, fatigue and weight loss. She was playing basketball and thought all the symptoms were related to that. The increase in activity was causing weight loss and fatigue. Because she was more active, she was more thirsty and of course, the increase in thirst caused an increase in urination. So basketball seemed to explain it all. However, six months prior to Holly’s diagnosis, she had read a book, “Will I Ever Dance Again”, by Lurlene McDaniel. The book was about a girl, who ended up being diagnosed with Type 1 Diabetes. By reading that book, Holly was able to connect her symptoms to what had happened to the character in the story. Holly began to wonder, do I have diabetes? 

She went to see her primary care doctor, who started her on glipizide (this is a medication typically used in Type 2 Diabetes). She went back to her doctor a couple of weeks later, not feeling any better. At that time, the blood sugar meter in the physician’s office just read “High”, so they sent her to the hospital, where her suspicion was confirmed, she had Type 1 Diabetes. 

Biggest Fear:

When Holly was first diagnosed, the fear of complications and death was drilled into her. She was told she would be lucky to make it to 50 years old and if she did, she would be blind and on dialysis. She was also told that she would never be able to have children. 

She is neither blind nor on dialysis and is not even close to developing problems with either one. She was also able to have two children without any issues. This was all possible as she learned how to effectively manage her blood sugars. 

Diabetic Rebellion:

Most people with diabetes go through a rebellious phase and Holly was no different. About one year after her diagnosis, she was done following all the rules, especially when it came to the diet. She was done doing the “carb exchange”. She wanted to go back to eating what she wanted, when she wanted and she did, for six months.  After six months she was tired of feeling like “crap” and decided the diet freedom wasn’t worth how she was feeling, so she went back to paying attention to the carbs and hasn’t looked back since. 

The Stigma Still Exists:

As 15 is an age of wanting to fit in and not stand out, Holly did her best to hide it from her friends but over the years she has gotten more comfortable with having diabetes and all that comes along with it. She does feel as though “the stigma still exists.” She doesn’t “hide” her diabetes, but she doesn’t “advertise” it either. 

I Have to Consult with My Diabetes First:

Diabetes has a way of making itself known, especially, at the most inconvenient times. It has a way of interrupting your plans, putting you behind schedule. There are times, whether you like it or not, that your diabetes has to be consulted first and then there are times you should have considered your diabetes and you didn’t and you end up with a blood sugar issue. Holly is no stranger to this problem. 

When asked if having diabetes has stopped her from doing certain things, the answer was yes, more so now, than when she was younger. She has a pump and continuous glucose monitor. Tape and water don’t mix well together. She has, at times, decided not to go swimming due to fear the tape will come loose or if she does, she  will constantly be checking the site to make sure the tape is still intact. She has also forgotten to put her pump in “activity” mode, when she was more active, ended up with a low blood sugar and by time she treats it and feels better, she is now behind schedule or she is too tired from the low, and it stops her from doing the things she had planned on doing. 

Stand Up for Yourself:

Throughout her diabetic journey, Holly has learned the necessity of standing up for herself and this lesson started shortly after she was diagnosed. 

At the time Holly was diagnosed, you had to stay in the hospital for about one to two weeks for diabetic education and it was here that Holly had her first low blood sugar. One of the nurses came into her room and gave her an insulin shot and not too long after that a second came in, who also wanted to give her an insulin shot. Holly tried to explain to the second nurse that she had already gotten one, but that nurse did not believe her and thought Holly was trying to get out of it. So Holly, respecting authority, got a second shot of insulin. A short time later, while she knew something was wrong, she wasn’t feeling right, she was scared and called for help. 

As a young girl and a newly diagnosed diabetic she was trusting that the nurse knew what she was doing and was acting in her best interest.  This was the first, of many times to come, that Holly had to learn that she was going to have to start standing up for herself when it came to managing her diabetes.

Patient, Prepared and Proactive:

Insurance, let’s face it, can be difficult to deal with and this is nothing new. Holly has had to learn to be patient, prepared and proactive, especially when it comes to getting her diabetic supplies. There isn’t anything that she hasn’t had to fight for, from pumps to continuous glucose monitors to insulin. She has spent hours on the phone and sometimes has had to wait weeks to get what she needs. 

The struggle is real, even when it shouldn’t be, but for Holly the struggle is worth it. She encourages anyone with diabetes to hang in there, don’t give up, fight for what you need and deserve because all the advancements in diabetic technology has made living with diabetes a little easier.