Brave Enough To Be Bliss

my eyes open, but I felt like if I let them close and didn’t get help, I was going to go to sleep and never wake up. It wasn’t that it panicked me at all, I just didn’t want to leave Kylee. I knew she was across the hall in her room with two friends who ha d spent the night. I wanted to wake my husband, but I couldn’t get my arm to move. It took what felt like minutes and a very focused effort before I was finally able to move my arm enough that my cold hand woke him . He didn’t know anything was wrong at first, but then realized I couldn’t talk or move. He leapt up, called 911 and an ambulance arrived quickly, unfortunately with sirens on, which I’m sure panicked Kylee when it pulled up to our house. Matt told her to stay in her room with her friends and the paramedics came upstairs and took me down the stairs before putting me on a stretcher on the porch. At the hospital, they weren’t able to figure out why that happened, but the symptoms did eventually all resolve. My internal medicine physician referred me to an endocrinologist because some of my labs were off. I continued to have issues with weakness, including trouble swallowing, and eventually saw several other specialists who didn’t find anything. It was frustrating so I kept trying to find help and ended up with a very smart rheumatologist who ordered a variety of tests, including one for dermatomyositis because I had also been having a painful rash on my face. Dermatomyositis is an uncommon inflammatory disease consistent with my symptoms of muscle weakness and a distinctive skin rash and after some time, the test results came back confirming the suspected diagnosis. My vision had gotten worse and when I tried walking on the treadmill, I couldn’t even do that , let alone run. So, appointments were scheduled with a neuro-ophthalmologist and a physiatrist for the leg issue. After various testing, the neuro-ophthalmologist said I was just going to have to live with the double vision which was forcing me to drive wi th an eye patch when it was dark because I couldn’t tell which lines were the real ones on the road. I couldn’t see the computer screen by about noon , as the more tired my eyes were the worse the double vision got, so I tried to do any computer work that was needed in the morning and pack my afternoons with meetings where my vision wasn’t such an issue. The physiatrist did an EEG on my leg and determine d my obturator nerve had been severed during the hysterectomy. There was no fix for that, but he felt with physical therapy I would be able to build up enough strength to exercise again without any long-term issues. During this time, I found out a colleague dated a retina surgeon I had worked with at Shawnee Mission, so when I couldn’t take the double vision any longer, I asked her if he would see me. This wasn’t an issue he would typically treat, so I knew I had to ask for a favor. He agreed and when I went to the appointment, he did one simple test having me follow his finger with my eyes and told me he would refer me to a particular pediatric surgeon at the children’s hospital. He explained that it wasn’t a surgery that was typically done on adults, and it took someone very experienced in this particular surgery to get good results. Fortunately, she agreed to see me, but is a very strange experience to go into a children’s hospital as a patient when you’re in your 40s. The front desk asked for my child’s name, testing was with pictures of animals instead of letters, and the exam chair was tiny, so the whole experience was quite comical. She explained I was experiencing the issue most likely because as a child my eyes didn’t work well together, but my brain figured out how to compensate so no one ever knew there was a problem. But then when I was so sick with the acute renal failure there was decompensation and once that happened, I wouldn’t ever be able to compensate agai n. It would require a surgical fix. I didn’t care what it took, I just wanted to get rid of the double vision issue, so we scheduled outpatient surgery. She added, however, that this particular surgery is more of an art than a science…in other words, it was going to be a guess how much to adjust the muscle and she explained she would actually be adjusting the muscle in the eye that was working properly, not the one that wasn’t , which seemed counterintuitive. She couldn’t guarantee that it would be corrected with only one surgery, but it should improve and, if needed, she could do a second surgery to get it just right. While that wasn’t exactly comforting news, it was still hope. I caught a break with that surgery, and it actually did work the first time. My eyes still tire extremely easily, though, so it’s difficult to read anything lengthy.

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