Participants Point of View-Life Stages w/ Diabetes
Week 34 Life Stages with Diabetes
by Cheri (@PrincessLdyBg)
Q5. What do you share or conceal about diabetes with your loved ones?
My diagnosis on June 15, 1991 was the beginning of a summer long ordeal that left me reeling for a couple of years. But my world started tilting off its axis about 6 months before that when I noticed a tiny black dot on the outside of right ankle. Thinking it was a skin issue, I started seeing a dermatologist.
Over the next few months he would try a dozen different treatments while the tiny dot became a sore, then two sores, and finally a large open wound. At that point, my mom insisted that I go see the family doctor because she felt like the dermatologist was just making it worse. So I got up early that Saturday and went to see the general practitioner that we all had seen for the last few years.
He took one look at it, told me to stop doing any of the treatments the dermatologist had me doing to it and started taking blood. A blood glucose test came up with a blood sugar level of 386 and I hadn’t eaten since the night before. While we talked about what that probably meant, one of his nurses was hand delivering my blood to the nearest lab and waiting or the results.
We then talked about my ankle. He’s an honest and straight-shooting kind of guy so he laid it all out for me. He gave me the card of a local plastic and reconstructive surgeon and said I needed to get in to see him right away. Just to make sure I understood how fast that needed to happen, he told me that waiting even a few days might mean the difference between losing a bit of muscle around my ankle and losing my entire foot.
By that time, the nurse was back with the rushed results. It was official. I had Type 1 Diabetes. I had no insurance and a job that paid very little more than minimum wage. So he sent me home with a promise that I would come back first thing Monday morning to start insulin therapy. He wanted to put me into the hospital, but knew with no insurance I’d never be able to pay for it. He also didn’t want to give me insulin when I couldn’t be monitored for adverse reactions.
I don’t remember the drive home or most of the rest of that day. I remember walking into the house and bursting into tears when my mom asked how the appointment went. I also remember the phone ringing before I could collect myself enough to explain. I would learn later that it was the doctor calling to tell my mom about the appointment.
The next few months were filled with so many doctor’s visits that my mom kept track of them with a schedule tacked to the pantry door. I learned how to give myself injections, took my first insulin, and saw the surgeon for the first time that Monday. I would end up seeing the surgeon about 2 times a week for the first 6 weeks and I popped in to see the doctor at least that many times a week to check my blood sugar levels.
The surgeon worked really had to insure that I lost as little as possible and he succeeded. I lost a bit of muscle tissue, but he never needed to do surgery. But as hard as he worked, my mom worked twice as hard. She was the one that had to clean and redress my ankle every night. A chore that usually included lots of tears from me and more painful screams than any mother should have to endure.
That summer I knew for sure that nothing about my diabetic journey would effect just me. I had a front row seat to how it changed my family. My mother aged at a faster rate due to her worry over me. My brother slowly began to move into the role of the protector despite being younger than me. None of us would be the same.
By the time the surgeon had sorted out my ankle and we knew for sure that I wouldn’t need surgery, I’d decided that I would shoulder the burden of my diabetes alone as much as I could manage. I worked hard to make it seem easy to anyone watching. I shared as little as possible about my test results, my lack of progress, and more importantly my fears. I figured if I acted as much like diabetes didn’t exist then no one would worry.
Fast forward 9 years and my diabetes was still classified as uncontrolled. I hadn’t had more than a few months of good control at a time and I’d developed retinopathy in both eyes. For the first time in our lives, my sister and I were living together and she didn’t let me get away with not sharing details after doctor’s visits. She also began encouraging me to talk to the doctor more and insist he think outside of the box to help me find some control.
That summer of 2000 a nurse practitioner would go against the then current practice of not mixing oral diabetic medication and insulin. For the first time since diagnosis, I saw real control and numbers I wasn’t afraid to share. With that sharing I realized how much better I felt when I didn’t carry the burden alone. I also realized that my loved ones worried about me anyway and keeping things to myself didn’t stop that from happening.
I had been active in my own medical care before that summer, but I became more and more vocal about what was and was not working for me. It would be a few years before I would stop trying so hard to make it look easy and really be honest about what kind of battle I was fighting. I still have a hard time sharing my fears, but I’m getting better at that too. I might not always volunteer the information, but when asked I am always open and honest about all of it, including my fears.
This journey that diabetes leads us on is never an easy one. It is a daily struggle that can sometimes get you down. Diabetes doesn’t play fair, often makes up its own rules, and frequently fights dirty. Diabetes isn’t just playing to win, it’s playing to the death. So even though it might look easy from the outside, living with diabetes is anything but easy.
Check out Cheri’s Blog http://princessladybug.blogspot.com/