I laid in bed this morning, daring myself to open my eyes. I was frozen in darkness, enjoying the only certainty of my sight these days. I knew that with my eyes closed and my body lying still, that the constant strobing, flashing, and mashing together of colors would be invisible to me. In the morning, for almost 30 wonderful minutes each day, my eyes have a brief reprieve from the constant pain I endure. No one told me that this would be my reality, and that Uveitis, Glaucoma, and near constant headaches and knife-like shooting pains in one’s eye would be my future after nearly 15 surgeries to save the little sight I have left.
I laid there, daring myself to open first my ‘good’, non-surgical eye that has only 1% of vision left. I ‘checked in’ with my surroundings, taking in the white ceiling, the recessed lighting, then dropping my eyes to the comforter where my guide Dog Elvis and his buddy Riese the cat slept peacefully. So far, so good. The lack of sunlight outside my shades helped keep the constant strobing to a dull, pulse-like signal off to my right. And now the left.
What a nasty three weeks it’s been. My eye pressure has been too low (think of a deflated basketball) since emergency surgery back in September to correct HIGH pressure (inflammatory and steroid induced glaucoma) that was taking my sight through the destruction of my optic nerve. The surgery essentially ‘pokes a hole’ in the eye, allowing an escape for the ever-building pressure. However, the hole is too large, and the eye won’t maintain a healthy pressure (between 8 and 12 for normal eyes). So, essentially, with the deflation of my eye (my pressure has been 3 for 4 months), the internal structures, including the choroid and macula, were beginning to show signs of detaching, and they needed to intervene.
The first intervention was an injection of blood to try to create a clot in the hole to patch it up. That failed. Then a gel called ‘visco-elastic’ and THAT TOO failed. Then a combination of the two, and that also failed. My eye was simply not cooperating with the surgeon’s plan. Two weeks ago, we pulled out the big guns, and we KNOW how that went down from my previous chapter.
The day after my sword-wielding fun on the bar at Pearl and Ash, I headed up to Yale. The center of my vision in the eye was simply gone. Mostly black/ charcoal grey, with some shapes appearing around a central loss. I was terrified. I took the train northbound to Yale, and grabbed my overnight bag and a cup of dog food for Elvis. I knew the news wasn’t good.
Upon arriving at Yale, it was discovered that I had a Macular Fold. Not good news. In fact, terrible news. The macula had ‘let go’ of the back of the eye along with the choroid membrane, that contains all of the blood vessels and nerves for the inside of the eye. It was excruciatingly painful. They couldn’t even touch my eyelashes on exam without me springing back in terror in the eye exam chair. My pressure? ZERO. The eye had NO pressure. All of the injection from the prior three days had leaked out. They decided to inject again. I started to cry. I was in terrible pain, and frustrated that so far, nothing was working. I took a stiff dose of percocet, and Xanax and waited 30 minutes before I allowed them to approach me with yet another needle. They had to re-inject THREE times to get the eye up to a ‘whopping’ pressure of 2.
We had a huge snowstorm coming, and my transportation options were limited. Because of the complications and pain that would arise over the next 24 hours, it was decided that I should be admitted to Yale New Haven Hospital. A friend from Facebook who suffers from AZOOR, one of my extremely rare eye conditions that I have that CAUSED this Glaucoma, works around the corner from Yale and offered to help me get more dog food and a ride over to the main hospital to get checked in before the storm started. My poor mother was frantic in trying to come up, but there was nothing for her to do overnight other than sleep in a chair and wait for more news in the morning. Driving 90 minutes in slippery conditions was not something I wished upon her, so I convinced her to stay put.
Overnight at Yale was not my best hospital stay. Because my pain level was so high when I was admitted, I was dosed heavily with Dilaudid and an antihistamine to combat the itching it caused. I was overly medicated and unable to speak. Elvis firmly planted himself in the center of my tiny hospital bed, causing me to contort myself with great discomfort and sweat from his warm radiating body heat. They hooked me up to IV fluids to try to get my eye pressure up, and about 30 minutes into my sleep, I desperately needed to use the bathroom. I couldn’t see to find the call button or the thing that turned on the lights. I felt around hopelessly in the dark to no avail. With my arms outstretched, I headed in the general direction of the bathroom with the hopes that I could feel my way there. My IV then got caught on something, and I was stuck. I took another step and tripped over some sort of container, perhaps a garbage can and went down. “Dammit!” I yelled to myself. I had to pee. Climbing up onto the IV pole, I used my leg in a sweeping motion to knock objects out of the way, and found the door handle. Thank God, I thought to myself.
This process continued all night until a nurse finally came to check my vitals. She placed the call button next to my head and moved the obstacle course to the bathroom out of the way. Elvis groaned each time I got up, alarmed that I would fall yet again. Morning came and I was itching for release. Lynne arrived to take me over to the Eye clinic for my next exam. Dr. Tsai gave me an uncustomary hug and asked me how my night had been. He was incredibly sorry an apologetic for the difficulty we were having in getting the eye to a stable pressure and explained why the pain was so unbearable. Apparently all the nerves in the eye are in the choroid. When it detaches it is extremely painful because inflamed fluid gathers there, distorting one’s vision immensely. The retina is like a piece of semi-flexible plastic. When a FOLD happens to this delicate part of the eye it is disastrous to one’s sight. The retina is only meant to flex ONE way. When it FOLDS, the ‘crease’ that is created is like a dent in a folded sheet of plastic. It is not meant to bend that way, and causes a line of distortion in the vision. Over time, that distortion can resolve itself, but in the meantime, it was like a psychedelic Salvador Dali Painting that made me dizzy and nauseous. Closing the eye was the only relief, but closing the lid actually hurt the surface of the eye immensely. I couldn’t win.
With a pressure of 4, they all breathed a sigh of relief. The visco gel had held overnight, and I was to go home and rest. I would return in two days to see Dr. Huang to possibly have a gas bubble injected in the back of the eye to re-inflate it. I had an important charity event for Guiding Eyes for the Blind I was to speak at on Friday, and was incredibly worried that he would inject this bubble mere hours before the event, leaving me to attempt being my charming ambassador self in front of 200 people while hopped up on pain meds. It was not ideal, but I had no choice. Luckily on friday, the pressure remained at 4 and we decided to hold off on injecting until Monday. I toughed it out at the event, and after 3 hours of smiling, hugging and speaking to raise funds for Guiding Eyes, I was cooked. The event organizers got me a car home and I went straight to bed, where I remained the entire weekend.
Monday was more bad news. Despite total rest over the weekend, my pressure had dropped to 2. Both Dr. Tsai and Dr. Huang were baffled. After several tests and three exams, they finally agreed to ‘wait and see’ how my eye responds this week. I was so grateful, as the thought of another injection made be feel depressed and like giving up. I thin they realized I was nearing the end of my rope with all the intervention.
Yesterday I was cleared to attempt a little bit of stationary cycling, and it was exactly what I needed. Although it was painful after 20 minutes, the idea of sweating due to exercise and NOT from pain meds was intoxicating. I put on my head phones in the spin room at the YMCA, turned off the lights, and threw a towel over my head. I sang out loud and rocked out for 40 delicious minutes. Exercise has been my therapy during this whole process. Triathlon has opened so many doors physically, mentally, and financially for me. To be away from training for nearly three weeks was somewhat akin to torture. I have 4 months to get ready for my first National Championship Race, and the podium is the only place I want to be. Anything else will simply not do.
Nervously this morning, I opened that eye, afraid that the activity I did yesterday would cause my pressure to drop further. Gratefully, it opened to the same haze and distortion that had been there prior to my little bike ride, and it appeared as though nothing had changed. Everything still appeared like a Salvador Dali painting, and I couldn’t see except shapes of things that may or may not be furniture in my bedroom. My striped curtains had a fantastical bend to their straight lines, as though held out to the side my some invisible force or wind.
Nurse Elvis stirred upon my movement, making his way to the top of the bed for my morning face wash. I giggled as he playfully bowed in front of me, pleased with himself for forcing a giggle from me. As he flipped over with great force onto his back for a tummy rub, I smiled, and said, “Thank you” aloud to Elvis, who replied with a snort, a playful sneeze and a groan as he swam around my comforter on his back in delight. BEST. NURSE. EVER. No matter what happens tomorrow with my sight, I KNOW that today will be great.