Living and Coping With Diabetes for 42 years

What one type 1 diabetic has learned from living and coping with diabetes for 42 years.

People who know me often ask, “How do you stay so healthy with diabetes?”

Those who do not know anything about me except that I am diabetic (ie, they see my insulin pump), often say, “You poor thing.” No one has ever said, “You are so lucky to have diabetes.” Everyone automatically assumes diabetes is a horrible “thing.”

But is it? After 42 years of living with type 1 diabetes, I would have to say, “No.” For me, diabetes has challenged and taught me so much. The good, the bad, and the ugly have happened and made me the person I am today. And I would not change a thing.

I would like to share what I have learned so far (I am sure there is more to come):

1. Responsibility: The bottom line is, it is up to me. I must take care of myself and my diabetes. No one else is going to do it. Others may try, but it is up to me. No excuses. Chiseling out time in the day to manage my diabetes is essential. Testing my blood sugar, exercising, and eating healthy are key components to every single day. The reward is how amazingly good I feel and look (had to include that). I am able to run 12 miles a day, play with my kids, walk my dogs, work, and experience a full life. This is how it should be. I want to be an active participant in my life.

At age 6, I begged my parents to send me to the Joslin Clara Barton Diabetic Summer camp. This was a 6-week overnight camp for kids. No one under age 6 was accepted. Many thought I was crazy for going, and that my parents were crazy for allowing me to go. But, I was determined to take responsibility for my diabetes. I wanted to learn how to give myself shots and test my urine (this was in the 70s) so I could sleep over at friends’ houses. I wanted to be independent.

Yes, I cried at night from homesickness and threw up from eating 3 cups of spaghetti (they had me on way too many carbohydrates), but I stayed. I knew even at the age of 6 that in order to live with diabetes, I had to take charge. I took charge and have never stopped. Taking responsibility is very empowering.

By taking responsibility, I set the stage for having the right mindset, because with both, I feel like I am in control.

2. Mindset: Let’s be honest. Living with diabetes is not always easy. There are many challenges along the way. But I have learned to stay positive (or get positive if I get off track) no matter what happens. I am not a victim of diabetes even though there have been moments when I felt like a victim—out of control.

I will never forget waking up in an emergency room and having no idea how I got there. I was 5 months pregnant and had experienced a very low blood sugar early in the morning. My husband had tried to give me glucagon, but I proceeded to punch him. There was no way he was going to get glucagon in me. He had no choice but to call the paramedics. A police officer showed up first, and I hit him too (I am so glad I do not remember any of this). Finally, the paramedics and police officer were able to get me tied down on a stretcher and get the glucagon in me.

Neighbors witnessed some of this activity. I was humiliated.

When I woke up in the hospital, I was so scared that something had happened to my baby (it had taken me 5 years to get pregnant). Luckily, the baby was fine. I remember crying out of sheer relief. But at the same time I was so scared and angry that this had happened. We had gone out the night before for Mexican food, and apparently I had miscounted carbohydrates. I was being aggressive with my blood sugars for what I thought was the safety of my baby (trying to prevent birth defects), but this proved otherwise. I needed to take a step back and relax a bit.

For many nights, I was afraid to go to sleep in fear that I would have a low blood sugar during the night. I had to forgive myself and my diabetes in order to move forward. My mindset had to change, or else I was going to be paralyzed in ongoing fear. Diabetes was not the enemy, it was my partner. And no matter what, I had to expect a wonderful life with diabetes since my diabetes was part of me—a lifelong partner (at least for now). It was not going anywhere.

With the positive mindset has to be another very important item—trust.

3. Trust: There is no way I could have lived 42 years with diabetes without trusting everything was going to be OK. When I was 7 years old, my endocrinologist told me that I would not live more than 20 years. Twenty years. I will never forget those words. Yet, in my heart, I refused to believe what he told me. Now, 39 years later, I am still alive with no diabetic complications. I proved that doctor wrong by working hard and trusting that I would be OK.

It is not always easy surrendering to trust. Fear is going to knock at the door, but it does not need to be a permanent guest.

Several years ago, my potassium level suddenly skyrocketed and my adrenal glands shut down. I felt horrible and could not function. I knew something was seriously wrong. Talk about fear. My endocrinologist and primary care physician had no idea what was causing this. Specialists were called in to see me. I was admitted to the hospital, given meds, and assessed. But no true cause was ever determined. The doctors believed that maybe multiple shots of cortisone to treat a neuroma on my foot had led to the high potassium levels.

Luckily, days later, I was fine, and my heart had not sustained any damage.

But, I had gone through a period of being scared out of mind. The momentum built up until fear consumed me, and I could not take it anymore. My greatest fear was dying and leaving behind 2 young daughters. I had to let go of the fear and start believing that I would recover. I had to trust. There was no other choice for me at this point. Trusting had such a positive impact. Letting go of the control freak in me and believing the doctors and Mother Nature would heal me was a huge yet unsettling step. But it worked. And I learned the power of trusting.

Even though I trust everything is going to be alright, I do not abuse it. Instead, I try to respect my body as much as possible and trust everything will be fine. Respect has to be an element.

4. Respect: I love chocolate, wine, ice cream, and Coke Zero. Yet, I also love and respect my body. You will never see me eat a whole bag of M & M’s or drink a whole bottle of wine because my philosophy is everything in moderation. I know what my body needs. There are times when my blood sugar is low (let’s say 46 for example) and it is tempting to eat everything in the kitchen. But I know the effect of overeating is not good. I would have to take insulin and feel bad for hours. The recovery time would be longer than the 20 minutes of feeling low (about how long it takes for food to kick in when I am low). So out of respect for my body, I leave the kitchen when I am really low and eat a snack in another room. I usually relax on the couch or outside. Once I feel better, I refocus and keep moving forward.

I try to think short term and long term when making choices. For example, if it is dinner time and that chocolate cake at the restaurant is calling my name, I think about, “How I will feel at midnight?” Sometimes it is hard for me to guestimate insulin requirements for high sugar and high fat foods at restaurants. And I don’t like the idea of having to “guess” on bolus amounts before bed (try to avoid going low or high during the night). So, I usually avoid high fat and high sugar treats in the evening. Not worth it out of respect to my body.

Personally, I know I cannot stop at just one or two bites of dessert, so I usually decide not to dive in unless sharing with my daughters or celebrating my birthday (and then I splurge at lunch).

My body and mind work together to tell me what is best, and out of respect, I listen.

By now you are probably realizing that there are many “things” I have learned from living with diabetes for 42 years. I have saved the best for last.

5. Perseverance: My favorite lesson learned is that of perseverance. Diabetes has its moments, but so does life. I have found that is so important to never give up. Everyone has moments (many not even related to diabetes) that challenge yet teach us so much. Life would be boring without these events. We grow so much from these experiences.

I embrace whatever is part of each and every day. And I know that each and every day is going to be different. No 2 people are the same and no 2 days are the same. I just happen to have diabetes in the mix. And that is okay. I am alive, enjoying the day.

Thanks so much for reading and have a great day!

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