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Diabetic Macular Edema: How I Almost Went Blind

This content originally appeared on diaTribe. Republished with permission.



By Eritrea Mussa

diaTribe’s Eritrea Mussa lived with well-managed type 1 diabetes for 20 years until someday, an unexpected complication nearly took away her sight. Here’s how she made it out in a single piece, vision and all.

I’ve lived a reasonably healthy life since being diagnosed with type 1 diabetes at 8 years old. Over the 20 years and counting, I’ve had minimal trips to the emergency room and uneventful eye appointments. I check my feet after the shower. I am going to the gym commonly. I be sure that to practice key diabetes health behaviors because the chance of complications gets drilled into you after diabetes diagnosis.

I remember how my dad used to inform me as a child: “Diabetes is a disease where the rule is for those who care for it, it’ll care for you!” It didn’t make quite a lot of sense to me then, but every routine endocrinologist visit included labs and urine tests to be sure that those oh-so-scary complications didn’t rear their ugly heads.

But what happens when suddenly, after a lot caution, a complication you never expected arises?

On Dec. 29, 2019, just shy of my thirtieth birthday, I flew back to the US after visiting family in Egypt. I used to be cranky and drained after the long trip, and as soon as I got home, I got right into a silly argument with my partner about some trash that he hadn’t taken out. I yelled and slammed the trash can on the ground. Suddenly, I felt a pointy pain in my right eye. After just a few quick blinks and a rush of what felt like tears to my eyes, every part was suddenly blurred. I clutched my eye, terrified.

“Oh my god, I feel I just went blind,” I shouted. I sat on the couch and sobbed. This was it, I told myself, believing that the chance of going blind that I’d been warned about had finally develop into a reality for me, and my time as a healthy person with no diabetes complications had come to an end. I believed on the time that I had nobody in charge but myself.

To make matters worse, it was 3 p.m. on a day when the remaining of the world was preparing for the brand new 12 months. I called my optometrist’s office, positive they wouldn’t have the opportunity to see me. Luckily the office was open the subsequent day, and my doctor fit me in. I asked my partner to drive me to a neighborhood pharmacy, where we found a pirate-looking eye patch for the night. The blurriness had began to make me dizzy.

I used to be unable to sleep. The thought of going blind kept me awake with suits of tears and hyperventilation. I used to be sure this was the conclusion of one in all my best fears: the lack of my sight.

I’d began wearing glasses at age nine, a 12 months after being diagnosed, and had seen the identical optometrist ever since. The following morning, at his office, I removed my eye patch, leaned into the headrest meant to carry my face still, and heard the press of the machine. With the cold plastic on my chin and eyes, I could feel myself well up with tears.

“There’s some bleeding in your eye,” he said. “That’s what’s causing the blurriness, and the specks you may be seeing in your eye are called floaters. This is normally attributable to diabetic retinopathy, which I actually have been maintaining a tally of for you but seems to have suddenly advanced. I’m going to recommend you see a extremely good friend of mine. Give me a second, I need to call him,” and he stepped out of the room.

I felt like I had been gut punched. His diagnosis gave the impression of a confirmation of the nightmares I’d had the night before. After about 20 minutes, he got here back to the room and said the opposite doctor, an ophthalmologist, would see me the next week, and that my eye hadn’t looked as bad as I’d feared. I sobbed again – this day trip of relief – but I used to be still fearful.

The following week felt like purgatory. I felt sorry for myself and offended with my diabetes. I’d go outside and stare on the sky with just my left eye and take mental pictures. And I cried. I felt like living with diabetes was like a sand hourglass where complications were inevitable, but at age 29, I never expected for the sand to expire on my sight so suddenly. At midnight on Latest 12 months’s Eve – someday after I saw my optometrist – I wanted for my eyesight back.

Three days later it was time to see the ophthalmologist. A nurse began a special IV to place dye in my eye to see what was happening. They took more photos of my eye with one other machine. At this point, it was hard to see in any respect; every part felt blurry from the dilation and the brand new machine, which flashed a light-weight brighter than anything I’d ever seen. I then sat at the top of the hall to attend for the the consultation with the doctor.

I remember him walking right into a room filled with energy and cheerfulness. He showed me photographs of my eye, and he explained that the small bleeding in my eye was the start stages of diabetic macular edema (DME), a complication of diabetes and diabetic retinopathy. His suggestion was to make use of a laser to cauterize the bleeding and possibly follow up with eye injections. These words terrified me. I asked him if these diabetic complications would result in blindness.

“We’ve caught this beautiful early, and during the last 22 years you’ve taken great care of yourself,” he told me. “Complications are normal and so long as we care for this, I can promise you: You is not going to go blind.”

I remember feeling like I could finally breathe. I finished blaming myself. I had done one of the best I could for the last 20 years, and I had treatment options that may help me keep my vision. “When can we start?” I asked. “Today,” he replied.

He explained that the bleeding in my eye was like a flooded basement, and that he would use a laser therapy to make the flooding stop. He asked me to return in two weeks to see if I needed a shot of anti-VEGF medicine to maintain the attention from bleeding. After a painless five minutes of him shining a vivid light in my eyes, I used to be done. Immediately after my appointment, I couldn’t see anything. A member of the family drove me home. I laid down for some time to nap, hoping it might take my mind off things. Once I opened my eyes, all the floaters and splotchy black spots were totally gone, and after I put my glasses back on, every part looked completely normal again. I couldn’t imagine it!

Two weeks later I returned to the doctor and, as he’d predicted, I did need the shot of anti-VEGF medicine. And now, two years later, my vision is great, and my regular appointments have been uneventful. Recently – while writing this text, actually – I saw a small floater in my eye. I made an appointment to envision it out. No fear, no more anxiety, just the reminder that DME, like my diabetes, is totally manageable. Those initial feelings of paralysis from when this primary occurred are distant memories.

I’m grateful for the constant research being done on this field to enhance the standard of life for those of us who could also be combating DME. I’m also lucky to have incredible doctors. It occurs to me that sometimes one of the best thing you’ll be able to do to take care of yourself might be so simple as maintaining with provider appointments.

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