I have been living with type 1 diabetes for 26 years. When I was diagnosed at 13, doctors explained the importance of taking care of my diabetes. They advised the same thing at every follow-up appointment, and they warned me about diabetes complications. Most of the time my immature ears didn’t hear. I was a kid, so I was invincible, right? I seemed like I was doing fine, although I hadn’t changed my diet and avoided testing my blood glucose levels. My mom kept watch over me, but as a single parent with a full time job, she was busy, and it was easy for me to put on the facade of care.
Then my 20s arrived and I was an adult in charge of my own care, convinced I had no time to check my blood sugar. I thought I knew my body so well. I felt healthy. I rarely went to see an endocrinologist.
I found out I could buy insulin without a prescription, and I did. I would test my blood sugar occasionally and then administer insulin to cover high blood sugars after meals. Since I didn’t have a doctor’s instructions on how much to bolus, I just guessed. I never felt as if I was doing something wrong, after all, there were never visible signs anything was wrong. I was convinced that I was beating diabetes, mostly because not feeling well had become my normal. I didn’t really notice that I was losing feeling in my feet, and that was mostly because I couldn’t remember the last time I could feel them. It really did not concern me.
In 2010, I broke my foot, and in addition to treating my broken bone, the doctors checked my A1c. It was 13.1%, which reflected an average blood glucose of 329. When I explained my lack of care to the doctors, they were shocked that I had survived so well for so long living that way.
It was just the beginning of my visible symptoms.
A couple of years later I discovered I had a mild case of diabetic retinopathy. Then I began to develop diabetic foot ulcers. They began as blisters.The blisters would pop, and then they would get infected. Having diabetes means that wounds do not heal quickly, especially in the feet. For the last few years, I think I have only gone a few months without diabetic foot ulcers. I had to spend periods of time in the hospital to treat the infections. I started to feel ashamed of myself. I was depressed. I wished I could remember the last time I could feel the grass beneath my feet. It became difficult to have hope that I would ever be free of foot ulcers.
I had good doctors, but their solutions were just bandages. They told me to take pressure off my feet using a knee roller but ulcers would then develop on the other foot. The answer then became using grafts to speed up healing in my feet. One of the most important things, of course, was to improve my diabetes management. I began to see an endocrinologist regularly. I started using an insulin pump and testing my blood glucose 7-8 times a day. Counting carbs was and still is a challenge for me, but I’m working on it. My A1c isn’t perfect but it is down to 7.3% and has been improving with every follow up.
Despite that, ulcers continued to develop in my feet. They continued to become infected. I felt destined to have foot ulcers for the rest of my life. Then something changed. After yet another hospitalization, I was referred to a podiatrist who wasn’t offering a temporary fix. He had a long-term solution to my diabetic foot ulcers.
The first step was to perform surgery on my left foot to lengthen the tendons. Diabetes can cause tendons to tighten. And that can lead to misshapen feet. (My feet had taken on a shape that resembled a question mark.) The shape of my foot meant that when I stood, I put pressure on just one area of the foot, as opposed to evenly distributing my weight.
The first surgery was successful and that ulcer is all but gone.
My right foot was little different. The ulcer was bigger. This required another surgery more complicated to lengthen the tendons in my right foot and in my right leg. I would also have the bottom bones in my middle three toes removed. This would relieve the pressure on the part of my foot where the ulcer was developing.
The wounds from the surgery and the ulcer are healing. I am staying off my feet and doing as the doctors advise. I finally have hope. I have a beautiful fiancé who loves me and is involved in my healthcare. I have step-children, dogs, and cats who deserve me at my best. I love them so much that I’m more focused on my health than I have ever been. I have few regrets in general, but I regret not taking the time to take care of my diabetes sooner. There is no guarantee that I wouldn’t still have issues, but I wish I could at least say that I tried.
Hi Patrick, Thanks so much for sharing your story. I had a couple of questions. Would you mind sending me an email?