The Day I Was Told I Was Going Blind From Diabetic Retinopathy

If there is any diabetes takeaway at all from this blog, it is that I cannot stress enough the importance of getting your eyes examined on a regular basis. Don't be fooled into thinking that just because you have no symptoms, that everything is fine.
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I've always believed in preventative health care. And as a person with Type 1 diabetes, every year I would see my ophthalmologist for a thorough eye exam. After each visit, I typically felt giddy and celebratory, always leaving the office with a good report; "Nothing to see here... see you next year." Even though I would normally receive good news, I always dreaded these check ups, as going blind from diabetes retinopathy is my biggest nemesis, my biggest fear and a potential turning point in my life that I always believed I couldn't handle. So every morning for about two weeks out from these annual visits, I would wake up with a feeling of dread and fear of having to stare down that beam of light that might reveal a problem. I can honestly say I was tormented by these thoughts. Tortured by the mere thought of blindness.

However, I'm perfectly aware of the fact that many inspiring and amazing people live full, wonderful lives with blindness. But for me personally, this complication is terrifying and non-negotiable. Typically, I've never been able to read or watch anything about the eye or blindness given my terror of this complication. Right or wrong, other than my annual exam, I consistently avoided all things related to blindness, diabetes related or not.

My fear set itself firmly into my psyche when I met Sam very early into my own diagnosis of diabetes. Sam had gone blind from diabetic retinopathy many years before, long before home glucose monitoring, better insulins, insulin pumps and continuous glucose monitors. What brought us together was a simple business meeting and we concluded at about 11 a.m. I asked Sam if he would like me to walk him to the corner where he would board a bus that was his transportation lifeline. He replied happily and proudly, "No, the bus stop is just at the corner from this building. I know right where it is." He headed off down the street and I went on about my day. At about 4:30, I looked up to see Sam standing in my office doorway. "Well, I guess I do need help." It had been 5.5 hours since we had said goodbye. He had never given up, trying and trying until the realization sank in that he would need to ask for assistance. That single, brave event both humbled and terrified me. I vowed never to let that happen to me. And that very day, I made my first appointment for an eye exam.

About four years ago, I once again found myself at my annual exam, and as I watched my ophthalmologist's smile fade when he looked into my dilated eyes, my heart began to pound in my throat. "Well Peg, I see something here and would like to refer you to a retinal specialist, as this is out of my scope of expertise." I just stared at him and screamed in my head, "WHAAAT? Why? What the hell do you mean? What do you see? I have 20/20 vision! I don't even wear glasses! Oh God! Oh God!" My thoughts rambled and raced and my ears started to ring. For once in my life, I was unable to speak, dumbfounded by what he had just said. I know my reaction sounds overly dramatic, but given my incredible fear of going blind from diabetes, I'm surprised I didn't scream and run out of the room.

"Don't worry," the doctor said. "DON'T WORRY!?" I can honestly say that the terror that ran through my veins was worse than anything I have ever experienced, including my initial diagnosis. I felt sick to my stomach. I didn't know what to do. I simply stared at the floor. I left the office with a referral for my first visit with a retinal specialist. What just happened? Oh God. What just happened?

As I found myself sitting in the retinal specialist's office, I thought of my 22-year battle with Type 1. No complications, very healthy, strong and capable. How and why did this happen? My name was called and they began a battery of tests, scans and exams. After it was done, the retinal specialist looked at me and said, "Peg. You're in trouble here." I immediately went into denial and bargaining mode. Surely there was a mistake, I told him. I had no symptoms. I had 20/20 vision. I was in good control. I poked my fingers several times every day and wore an insulin pump. The doctor insisted that we begin treatment immediately as I was in danger of going blind at any moment. I began bargaining with him; perhaps we could do the treatment next month or next year? Surely there was a mistake. I got out of the exam chair and began pacing wildly. I have 20/20 vision.

"PEG! SIT DOWN! You. Are. Going. Blind!" the doctor literally yelled at me. "You need treatment immediately. NOW." I looked at him and he was mad and very, very serious.

"Really?" I softly said. "Really." he replied. We stared at each other and feeling numb, I sat back down.

I couldn't believe it. Here it was. I was so shocked, mainly for the reason that I had no symptoms at all and 20/20 vision. Yet the doctor's sense of urgency was clear, and the eye scans were clear: I was in big trouble. I was going blind, and I absolutely had to accept the unacceptable, disregard my denial and do something quickly. So after what seemed like an eternity, I turned to the doctor and said, "Okay. I clearly have to trust someone. So, I choose you. Please help me." And an interesting thing is that I realized, that by trusting someone, I actually gained back some control of the situation by making the best decision I could with what I knew. And I felt a small sense of relief within my own vulnerability. But I was petrified and filled with grief about the whole situation. And scared to death about the outcome of the treatment. Would it work?

The doctor explained the treatment plan as laser and injections. Injections in my eyes? Are you serious? But I didn't care what I had to do. In that moment, nothing, and I mean nothing could be as bad as going blind. Not to me anyway. So with the prospect of immediate blindness looming, I said yes and we quickly set the treatment in motion.

I actually found out that the injections, for me, were very tolerable and fast. I honestly felt very little to nothing at all. The lasers were a more difficult treatment for me to tolerate, but again, endurable. Over a period of weeks, I had two treatments of laser and injections in each eye. And on a follow-up visit, I was told that, for now, I was out of danger and that I didn't need any further treatment at that time. God, it had worked. Exhale. Breathe. I quickly left the building and literally ran to my car, fearful that they might, for some reason, call me back to say that they had made a mistake! But there was no mistake. I had dodged a huge bullet and I knew it. Gratitude doesn't even begin to describe the feeling I felt as I drove home.

In one month, I will once again, return to the retinal specialist for my annual exam. Will I have to have more treatments in the future? I don't know. Perhaps. But this treatment and the results I have personally experienced literally changed my attitude about going blind. Don't get me wrong, I'm still fearful. I can't help it. But I'm not as afraid of what I don't know.

If there is any diabetes takeaway at all from this blog, it is that I cannot stress enough the importance of getting your eyes examined on a regular basis. Don't be fooled into thinking that just because you have no symptoms that everything is fine. Don't let fear keep you from taking care of yourself. And even though not everyone will experience what I did, you owe it to yourself to stay ahead of your health, especially if you have diabetes.

I'm not a medical doctor, and I speak for myself only when I say that this treatment is simply a miracle and nothing less. And I believe in my future and my ability to fight the good fight against this potentially devastating condition. I believe I will win this fight and have a good, long, healthy life, with eyesight. For me, there is no other way.

Disclaimer: I am not a medical doctor and the personal opinions expressed here are based on my personal experience only.

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