A Personal Journey With Type 2 Diabetes

Agnes Czuchlewski shares her story

Photo of Agnes Czuchlewski

Courtesy of Agnes Czuchlewski

Meet the Author

Agnes Czuchlewski is a patient advocate for women with heart disease and diabetes. She currently facilitates the Lenox Hill Hospital Support Network Group.

For the longest time, I’ve had a small plaque in a green rustic wooden frame on my desk. I know my sister gave it to me, but I have no idea when. It was that long ago.

It’s a picture of a lighthouse on a rocky outcropping, surrounded by water. At times I would look at it and see a tranquil picture filled with greenery, a lone pine tree, and ocean breezes; other times, I could see the waves coming up the rocks and slamming into that little island.

The caption of the picture reads, “Life is a journey, not a destination.” And that is how I see my life with diabetes: always a journey, sometimes with breezes and sometimes with crashing waves that threaten to undo me.

Getting a Diagnosis

It was the mid-1990s, and I was in full swing of a high-stress job. I had gained some weight while in my 30s and early 40s but was relatively healthy—too young and too busy to see a doctor. I hadn’t had bloodwork in about seven years, figuring I’d know if anything was wrong.

Add to this my mistrust of doctors in general. Throughout my life, I had the misfortune to run into those who believed that good medicine was administered with a strong dose of bullying, especially about my weight. Therefore, when I was diagnosed with type 2 diabetes, it was a surprise but it wasn’t surprising.

Agnes Czuchlewski

I had entered the sphere of chronic disease and, frankly, I was scared and confused.

— Agnes Czuchlewski

I had a family history of diabetes, high blood pressure, and coronary artery disease, all of which go hand-in-hand with each other, as I would later find out. However, the fact that I thought I was perimenopausal was what got me to see a doctor in the first place. Every time I ate a large meal or something rich, I would break out in a huge, flushing sweat. What else could give me that result? Then came the massive ankle swelling that no one could explain.

As I found out, my initial blood sugar test was over 400. Panic set in: How do I fix this? What do I do first? Next? Where do I start? It took me a while at first to realize that I couldn’t “fix” my diabetes, but I wanted to control it. Then, I would have to decide how I was going to live with this disease as well as the risk factors that came along with it.

Agnes Czuchlewski

It took me a while at first to realize that I couldn’t ‘fix’ my diabetes, but I wanted to control it.

— Agnes Czuchlewski

This wasn’t a sore throat that would go away in a few days with proper care. I had entered the sphere of chronic disease, and frankly, I was scared and confused. But I was determined to find out what I needed to do differently and why. I also discovered that, like my family history, my diagnosis also put me at a higher risk for developing heart disease. I knew I would need to make changes to deal with this risk before long.  But right then, I needed to address my new and immediate diagnosis. Diabetes was like the wind, and I knew that if I couldn’t stop the wind, I needed to adjust my sails.

Learn First, Then Consider Options

Once she learned about my diagnosis, my lifelong friend, who just happens to be a nurse practitioner and a Certified Diabetes Educator, came over with a meter and test strips in hand. She taught me the essentials of testing my glucose levels and explained some of the basics of the disease to me, which greatly eased my anxiety. At least I was starting to understand what I needed to know.

The first doctor I saw was a local general practitioner who was recommended by many of my mom’s elderly friends. When I visited her, I began to understand why. There was no conversation, no instructions, and no empathy. I just got a point-blank question: “Do you want pills or a shot?” When I said I didn’t want either, I received an odd look in response, as if to say, “I’m the doctor—pick one.”

Agnes Czuchlewski

Patient advocacy wasn’t even a phrase at this point, but I realized that I needed more than this.

— Agnes Czuchlewski

This was the first time I ever challenged a doctor, and it was a revelation. Patient advocacy wasn’t even a phrase at this point, but I realized that I needed more than this. I responded, “I want training.” To my surprise, I was told, “No one has ever asked for that before.”

I was given information for a two-day training session to learn about the care and management of diabetes. It was wonderful but overwhelming. Sort of like a disease-based boot camp. I learned what I needed to know and, most importantly, why I needed to care of myself and my new life partner: diabetes.

I learned that diabetes is not a one-size-fits-all issue. Everyone’s metabolism is different, exercise is a major key, and it’s not just what you eat but when and how much. I learned, personally, that high fat impacted my numbers as much as sugar and starch (ah, the hot flashes!). I began to define the outcomes I wanted and what the “long haul” of my life would look like. And I went into action.

Know Your Options, Know Yourself

As I had told the first doctor, I didn’t want pills or a shot. What I realized I wanted was a new doctor. Someone who would work with me to take control and explain why some things worked while others didn’t.

I wanted someone who would let me watch my diet, learn the disease, and lose the weight on my terms—that is, without medication until the time came when it was necessary. My body and my numbers would let me know when I got to that point.

Agnes Czuchlewski

I learned that diabetes is not a one-size-fits-all issue.

— Agnes Czuchlewski

In the subsequent six months, I was able to lose 65 pounds, got my A1C down to under 7.0, and began to understand what I was facing. I was learning not only what is in my control but why I should control it. Being told to “take this” was unacceptable. I found out that if I couldn’t discuss questions with my doctor, I needed to move on.

One of the doctors I saw, who was also diabetic, would give me intense talks about managing my care and numbers, but then we would end up discussing food and the latest restaurant visit. While extremely enjoyable, this conversation was not moving me to where I needed to be.

On the other hand, there was a doctor who treated me as though my diabetes was my fault because I was obese and, therefore, brought it all on myself.

When I finally found the right match with a doctor, it was a wonderful way to learn, to feel supported, and to have the partnership that moved me to what I wanted to do.

Other Risks of Diabetes

I've learned that having type 2 diabetes can also put you at risk for other conditions, like heart disease, stroke, and vision problems.

On December 28, 2015, I had a heart attack. I had a stent placed the next day and was home for New Year’s Eve. Physically, it might have been simple, but the mental impact was significant. I was back to asking the same old questions: What now? What did I do wrong? What’s next? But no simple or comforting answers were appearing. Only grim statistics.

While I healed very quickly, I had a lot of time to think of the implications of the event.  I started to obsess over whether it was going to happen again. If it did, would it be more serious? Ultimately, would I live? I was feeling new things happening in my body, but no one was explaining things to me.

Always patient, highly skilled, personable, and willing to take on whatever inquiry was on my mind, my cardiologist, Dr. Rachel Bond was a godsend for me. Finally, she gave me one piece of advice that I still carry with me and which has become an ongoing mantra to me: “Go live your life.” It gave me permission to stop asking for the answers to the unknowable.  What would happen would happen, and as long as I did what was necessary health-wise.

Dr. Bond did one more life-changing thing for me: she recommended that I attend a new support group that was starting that week. So, three weeks after my heart attack, I joined a small group of lovely women of all ages and backgrounds who were gathered to share their “heart stories.” 

Some of their tales were horrifying, some were told with a wink of the eye, and some, like mine, weren’t terribly challenging but led to a discovery about dealing with chronic illness. Most importantly, we were all survivors, and this was the start of a new chapter of my life journey: WomenHeart.

The meetings were enlightening. I learned so much and was able to share my knowledge and fears in a supportive atmosphere. After telling my heart story to several branches of the media, I was chosen to go to the Mayo Clinic to become certified as a WomenHeart Champion.

For five days, I and a cohort of close to 100 other “survivors” from all over the country learned so much about heart disease, group leadership, and so much more. What was most incredible was the connection that we felt to one another, our “heart sisters.”

Since then, I’ve been facilitating the WomenHeart Support Network of Lenox Hill, and it has been an inspiring opportunity to meet so many amazing women!

When Good Is Too Good or Not Good Enough

Going back to right after my cardiac mishap, however, I stepped up my medical care by adding additional doctors to my roster of support. In addition to seeing my cardiologist regularly, I started to see an endocrinologist at Lenox Hill in 2016 and found Dr. Emilia Liao in July of 2019. She’s terrific, kind, and a great listener who gives wonderful advice. She has really helped get my A1C under control.

I admit I can be a bit of a perfectionist. Or perhaps it is more of a desire for approval for a task done correctly. In either case, I discovered on my journey with diabetes that I can make adherence almost an obsession when I put my mind to it, driving myself and others to near madness!

My life became a list of “should and shouldn’t.” I shouldn’t eat that, I shouldn’t cook that, I should work out, I should test my blood again, I should cut my cravings, I should only eat healthy foods, and on and on. I realized that to do my best to follow my life’s health plan, I was, as a friend called it, constantly “should-ing” on myself.

Agnes Czuchlewski

Cut yourself some slack. It is very easy to berate yourself and to focus on guilt rather than progress.

— Agnes Czuchlewski

The lesson learned was to cut yourself some slack. It is very easy to berate yourself and to focus on guilt rather than progress. I needed to establish an “abuse-free zone” for myself, in my life, relationships, and medical interactions. If you don’t do it right today, there is tomorrow to try again.

And as time went by, the fervor with which I adhered to my care routine at the start began to wane. I believe it is a natural progression of things with a lifelong disease; it’s what I began to call “roller-coaster time.”

You start at a peak, with all the adherence you can muster, then you begin to relax, thinking, “I can do this, I can take a break.” Then, as you see your success and results starting to slip, you recognize the need to recharge your efforts, to reinvigorate the focus on the success you had in the first place.

Find Success By Being “LATE”

It’s been over 25 years since my initial diagnosis of type 2 diabetes. There have been so many changes that it’s impossible to count. There have been extremely valuable advances, not only in the drugs of choice, but in attitudes and opportunities as well.

There are new doctors with new conversations about linked topics, such as metabolic disorders, diabetes, heart disease, and so on. There is so much you can learn on the internet about health. Just be sure the “knowledge” gained is factual. And don’t drive yourself crazy with what you find.

I’ve come up with an acronym to remember how to take in and assess new information: LATE. 

  1. Start by learning what you need to know, from the internet, your healthcare provider, or another resource.
  2. Advocate for yourself. It is essential to ask! Ask for what you need: help, information, support, understanding, and verification.
  3. Test not only your blood but your decisions. Don’t be afraid to modify what isn’t working for you (with your doctor’s partnership, of course).
  4. Evaluate any preconceived notions or fears you might have that are keeping you from your journey forward before making a final decision.

Lighthouse Mentality 

Many people might question why I would want to share my journey with diabetes, saying it’s too personal or intimate. I would counter by pointing out that it may be personal, but it isn’t unique. With the increase of type 2 diabetes in the general population and heart disease being the number one killer of women and impacting over 48 million women in this county alone, many people are finding themselves at the start of their journey.

I’ve spoken to groups of cardiologists about listening to their patients and about the power of patient advocacy. I’ve spoken to various media outlets about the impact and symptoms of heart disease, specifically in women. The message is getting out there, but we still have a long way to go.  This is why I continue to tell my story. 

When I think of the lighthouse plaque on my desk, I ask myself: Do I become the lighthouse that stands alone on this rock and concentrates on being buffeted by the wind and waves? Or do I do what I was meant to do, shine my light to help others?

Through it all, there is a little pine tree that stands next to the lighthouse, which has seen both sides of this life and has thrived. If sharing my experience, empathy, and knowledge can support anyone on their journey, then my life’s journey is a success.