Earlier this week I went to a retinal specialist to deal with my first diabetes complication. It was an emotional experience for many reasons. First, some background information…
Dennis introduced me to his optometrist when we were dating. Dr. Larson is such a fun doctor and we really enjoy our joint eye exams! He gives us a lesson in optics and vision on each visit, including having the kids look through his instruments to view my optic nerve during my dilated exam. Dr. Larson was always enthusiastic about my “beautiful blood vessels!” when he examined them for signs of bleeding, otherwise known as the beginning of diabetic retinopathy. It felt like receiving a bunch of gold stars for my efforts to control my blood sugar. As the years went on, he’d often comment: “No one would ever guess you’ve had diabetes for 25 years!”
A few weeks ago, my annual eye exam did not follow the typical script.
Dr. Larson dilated my eyes with the baby dose in the corner of my eye because I dilate like crazy and I’m a spaz about getting drops in my eyes. We’ve perfected this routine over the years. He remarked, “Beautiful!” upon examining my right eye. Then he turned to my left eye and was eerily quiet.
“Hmmm, I see some slight bleeding in this eye,” he said.
Now, typically Dennis and the kids are in the exam room with me. It’s a cool office in an old craftsman style house in North Park. There are a lot of cool old details like a brick fireplace and built-ins that hold contact lenses. We all pile in to share in the optics lesson that Dr. Larson never fails to deliver. But, because of the pandemic, I was in the exam room alone this time.
I suddenly felt my heartbeat quicken as my vision narrowed and I started to sweat. “What?! No, this isn’t what he’s supposed to say. What does this mean?!” I thought. Dr. Larson went on to explain that he’d refer me to a retinal specialist for further testing and treatment as I took deep breaths and tried to calm my panicky feelings.
“This is going to be fine, this happens to folks who live with diabetes for many years,” I told myself. As I entered the waiting room, I briefly told Dennis what Dr. Larson had found, but he was on his way back for his eye exam, so we didn’t have much time to discuss it. I quickly transitioned into “mom-mode” as I tried to keep Sienna and Teo from bored wrestling in the waiting area. As I’m so good at doing, I pushed any feelings of fear, guilt, anger, and frustration down deep and didn’t think much about the upcoming appointment with the retinal specialist.
It wasn’t hard to avoid my emotions as life was busy and full the next couple weeks. Work was busy as I continued to setup the new office and get ready for fall busy season. The kids had a few days of online school before starting back in person the first week of September. We were trying to reestablish our home routines after being gone for a few weeks, so there were meals to prep, rooms to clean, miles to run. Plenty of ways to distract myself from my fear and disappointment.
Dennis and the kids dropped me off at UCSD’s Shiley Eye Center on Monday afternoon. The appointment was supposed to last about three hours and my eyes would be dilated, so they planned to pick me up afterwards too. There’s always been something about being picked up that makes me feel loved and cared for, so I was grateful for their service.
After the medical assistant did the initial intake and my eyes were dilated and photographed, they put me in an exam room to wait for the fellow and then the supervising physician to examine me. The wait was fairly long and I couldn’t read since my eyes were dilated. I looked around the room prayerfully. There were huge images of “Proliferative Diabetic Retinopathy” on one wall that creeped me out. Then, I noticed a sharps container full of used syringes on another wall. A comment the medical assistant had just made came back to me. I noted that I hated needles, which was ironic as a diabetic. He’d said his girlfriend was a retinal specialist and gave injections in the eyes all day long but couldn’t take a shot herself. I rapidly connected the dots. “Would I need an injection in my eye?!” my brain screamed.
I started to breathe quickly and my pulse raced. As I took deep breaths and tried to reason through my fear, the resident came in to examine my eyes. Fortunately, as she checked my eyes we discussed treatment options. Injections are one option, but they’re not needed if we opted to do laser treatment. Such a relief!
The main doctor came in shortly after with two medical students. As a longtime patient of UCSD, I’m used to the drill of having medical students accompany doctors. I could hear the resident who’d just examined my eyes advising a couple other students just outside the door. It was a comfort when she said, “No matter how well controlled their diabetes is, this is a very common complication that we see when patients have had diabetes for 25 years or more.”
In many ways, this entire experience felt a lot like when Mateo was in the NICU after he was born and the doctors and nurses kept referring to him as a “diabetic baby” meaning his mother had diabetes. The guilt and sense of failing to take good enough care of myself was so strong.
When the doctor explained that the laser treatment was more permanent, whereas the injections would have to be given every 3-4 months, the decision was quite easy! I told him, “That sounds horrific!” He also explained that he wanted to do more diagnostic tests on my right eye before doing the laser treatment. The test involved an IV of dye so they can better see if the vessels are bleeding. I honestly replied, “I’m not mentally prepared for an IV today.” We opted to do the laser treatment on the left eye and I’d come back in a few weeks for the right eye.
The resident came back and prepped me a bit for the laser treatment. “It’ll feel like little pinches on your eye, but we’ll numb you a bit with drops.” As long as no needles were going into my eye, I felt pretty good.
I was overly confident about my ability to tolerate the laser treatment.
Holy cow, it was so hard! As noted, I’ve always been a spaz about my eyes. You know that episode of Friends where Rachel’s character can’t sit still for the air puffing machine at the optometrist? That’s exactly how I reacted to that darn machine for years!
So, the resident is wearing this gigantic laser on her head and asking me to look in specific directions: “Look up,” “Look left,” etc. Whenever she activated the laser the light would turn green and the machine beeped. I couldn’t stop anticipating and reacting to the laser. The first few zaps hurt a bit and I must have expected it to continue or get worse, so my flinching got worse. She kept reminding me to open both eyes, which I was trying to do! After about 60 shots of the laser, I pulled away and started crying. “I’m sorry! I feel like I’m messing this up so much,” I told her. She was kind and reassuring, although I’m sure her experience with sobbing patience was minimal in this particular practice.
“How much have we completed, percentage-wise?” I asked.
I really started to cry when she replied, “Less than ten percent.”
She reiterated that we could break the treatment up into multiple sessions and didn’t have to get it all done today. That knowledge helped. We tried again. Somehow, through a lot of prayer and taking little breaks since I kept holding my breath in order to concentrate on keeping my eyes open, we made it through the entire treatment. My vision was super blurry and my body felt so tense, but I was relieved.
Getting through the actual treatment was one thing, but wrestling with my emotions around having my first diabetes complication has been a longer process.
I try so hard to control my blood sugars. Over the years I’ve craved and reveled in affirmation from doctors and loved ones about how well I manage my diabetes. On some level, I’d internalized the message that I could keep bad things from happening (like complications) through sheer effort and grit. This diagnosis feels like a failure. But, even worse than that, it feels like proof that complications can happen even when I do my best to avoid them. Which then reminds me that bad things happen that are completely out of my control. That’s my biggest fear of all.
Fortunately, that’s not the end of the story. Knowing that God, the Father, Son and Holy Spirit has been walking alongside me all my life, including all my years with diabetes, brings such peace. There have been many trials over the years, but God has been faithful to provide guidance, strength, and the support of wonderful doctors and loved ones to bring me through the challenges. He’ll continue to be there in the midst of this lifelong journey. I don’t know what the future holds, but He does.