Andrea has shared her experiences with sight loss to help raise awareness. Initially diagnosed with scleritis and uveitis, Andrea then also developed glaucoma and cataracts. Here she shares her story and what life is like living with sight loss. A big thank you to Andrea for taking the time to write this for The Big PICture.
History and Diagnosis
I was diagnosed with Type I diabetes when I was 8 years old at a time when the masses didn’t know much about it and sugar free Kool-Aid had yet to be created. At 22 years old, during my fourth month of pregnancy, I was diagnosed with rheumatoid arthritis. Autoimmune disease found me early on. I am now 47 years old.
On February 4, 2018, I was woken up in the middle of the night with severe pain in my left eye. I had never felt pain like that before. I was certain that I had a tumor behind my eye. What else could it be? A week later, after a misdiagnosis of a sinus infection by my primary care doctor, I went to the ER where I was given Percocet and a CT scan. Relief. It was the first time in over a week that I wasn’t in pain. The ER doctor said that I most likely had scleritis. I had never heard of scleritis before that moment. I had an appointment with an ophthalmologist a few days later and learned it was scleritis and uveitis caused by my RA. They prescribed eye drops and steroids. Before this, I was not aware that RA could cause eye issues. I had been in a flare for a couple of months but never imagined it could affect my eyes. I had also been busy planning my wedding when this happened, a month before the big day.
Somehow I made it through the next month juggling pain, pain meds, vision issues and adjusting to life without contact lenses. I wore a pair of eyeglasses that had an old prescription. Prior to this, I avoided wearing glasses at all costs. My husband and I were married at the beginning of March…awkward eyeglasses, red eyes, pain meds and all. We were thankful I was able to make it through our wedding day but we decided not to push our luck and canceled our honeymoon.
Over the next couple of months, my prednisone dosage would be increased several times. The inflammation in my eyes was not responding to the treatment. The eye pain reached new levels. Excruciating pain. Debilitating pain. Pain in both eyes but worse in the left. I tearfully begged the front desk for a same day appointment with my ophthalmologist. I can’t recall who drove me to that appointment but I know that I had to remain in the office for a couple of hours. My eye pressure was extremely high and they wouldn’t let me leave until the medication and eye drops they gave me started to take effect. I was told that I had glaucoma, which may have been caused by the high doses of steroids I was on for treatment of the uveitis. I was prescribed three glaucoma eye drops and put on an oral medication. I was in denial. I couldn’t possibly have glaucoma. Not that I knew anything about glaucoma. I convinced myself that it was temporary and once the steroids were out of my system, the problem would resolve itself. Well, the pain persisted. The pressure could not be controlled. I was told I would need surgery.
In the midst of the glaucoma diagnosis, I also had bleeding in my left eye. One night I began to see what I described as “red lava lamp” in my eye. It was blood. I was told it was most likely from steroids as well. Initially it was thought that my retina had detached but the retina was unaffected. I had to undergo several eye injections and thankfully, it resolved and eventually the blood cleared up.
Rheumatoid Arthritis
During those few months, with the goal of gaining control of the inflammation in my body and eyes, my rheumatologist changed my biologic medication a number of times. I had been on Enbrel previously so she prescribed Xeljanz. I took it for only two weeks because it gave me headaches and caused horrible hot flashes. My wedding day was cool and rainy but I almost passed out from a hot flash. I refused to continue taking it. Next, she ordered Remicade infusions. Then Inflectra infusions. Then a drug called Cell-Cept, which caused severe fatigue, palpitations, chest and body pain. Next on her list was Rituxan infusions but then she decided on Actemra injections, which finally calmed things down. Hallelujah. Throughout this time, I was in constant, severe RA pain in addition to the eye pain and was taking Norco as if it was Tylenol. I lost 30 pounds in about 3 months and my body was in such a weakened state that I could barely walk. At the end of April, I went on medical leave from work thinking I only needed a month or so for things to improve. I wouldn’t return for what ended up being six months.
Surgeries
In June 2018, I had the first glaucoma surgery in my left eye. In September 2018, I had a revision surgery because the implant needed to be adjusted. I was told that the inflammation in my eye was displacing the glaucoma implant.
I returned to work in October 2018. I struggled to function in the office but I was determined. By then, my RA symptoms had improved and I was regaining strength in my body. I then had a revision surgery in February 2019 and another in September 2019. The glaucoma implant would not stay in place. With each surgery, the pain during recovery worsened.
By this time, I had developed a cataract in my left eye which was further affecting my vision. I was told that the trauma to the eye had caused the cataract. I had gradually lost some peripheral vision from the glaucoma in both eyes and developed sensitivity to sunlight. My eyes were almost always red, due to the uveitis.
I wish I could remember at which point I realized the extent of vision loss in my left eye. It seems that it was so gradual that I didn’t realize it, or maybe I always thought that it was temporary. The last time I was able to drive was in April 2019.
In January 2020, my ophthalmologist told me I was having “autoimmune activity” in my left eye and he wanted to refer me to University of California, Irvine for further treatment. I was terrified but relieved at the same time. I could sense that after two years and four surgeries, he could do nothing more to help me.
UCI Treatment
I recall that my husband took me to my first visit at UCI. It was on our second wedding anniversary. During my visit, the glaucoma specialist examined my eyes and then excused himself and quickly walked out of the room. Great. When he returned, he was accompanied by a cornea specialist. She quickly examined my eyes and then they exchanged terminology I didn’t understand. She then told me that she knew I was there for glaucoma treatment but that she had to repair the “melt” in my left eye first. Essentially, I had a hole in my eye caused by autoimmune activity. This scleral melt was located near my glaucoma implant. The glaucoma specialist said that after the melt was repaired and healed, he would remove the existing glaucoma implant and put in a new one in another spot. And oh yes, the cornea doctor would then extract the cataract. The room was spinning. I couldn’t think. I couldn’t absorb what they were telling me. So I did what I was told and walked to the scheduling office. Hoops were jumped through and the surgery was scheduled for the following week.
The scleral melt was repaired and patched/grafted on March 11, 2020. A week later, the world was shut down because of the coronavirus. On April 8th, Dr. Glaucoma removed my original device and implanted a new one. Dr. Cornea then extracted what was a large, uncooperative cataract and wasn’t able to put in a replacement lens. At my post-op appointment, I learned that would happen during another procedure. Oh yes, that other procedure would be a cornea transplant. I didn’t know exactly what a cornea transplant was and I wasn’t sure I wanted to know. All I knew was that I still couldn’t see out of my left eye and it sounded to me like it was possible to change that.
On July 15, 2020, I had a cornea transplant. Dr. Cornea said she didn’t know how much, if any, vision I would have in my left eye after the surgery but that hopefully it would be enough to improve with a new glasses prescription. I was hopeful.
My recovery went well and at my third post-op visit, I was able to see the big “E” on the chart with my left eye. It was blurry but I could see it. I allowed myself to be excited, for a short time. I told everyone who would listen. But, as weeks passed, it became more blurry and eventually I was only able to see blurry light and movement from my left eye.
I was born with dark brown eyes but interestingly enough, my left eye healed from the cornea transplant with a blue tint. Dr. Cornea said, “Oh yes, sometimes that happens. It heals that way.” Well, surprise, a blue eye!
The recovery from the cornea transplant involved numerous follow-up visits and many eye scans during the next year. At each visit, Dr. Cornea would remove a few sutures and say, “It looks beautiful!” The ineffectiveness of the transplant on restoring my vision was not really discussed. Looking back now, I think it was expected. Meanwhile, Dr. Glaucoma’s focus was managing my eye pressure and preventing any further surgery in that eye.
Currently the pressure in both eyes is stable and inflammation has been down. I’m still on Actemra and now also methotrexate for my RA. Dr. Glaucoma and my rheumatologist decided methotrexate was a good alternative to steroids in managing inflammation. I’m still on four different glaucoma eye drops and also prescription drops because my RA causes dryness which affects the already low vision in my right “good” eye. My right eye has also had a laser procedure to hopefully prevent a sudden rise in pressure. This fight will never be over. Several doctors have said something along the lines of, “You are young, we need to preserve the vision you have left.” My response is always, “Thank you for saying I’m young!”
Living with Vision Loss
I used to lie awake in panic at the thought of losing my vision. I thought it was the worst thing that could happen to me. I was terrified and in denial at the same time.
When it became apparent that the vision in my left eye was permanent, I knew I needed to accept it and stop being scared. I had little peripheral vision in my right eye and the central vision in that eye was also affected. I knew I needed help. I needed support.
Dr. Glaucoma first said the words “legally blind” in February of 2021. It should have felt like a punch to the gut, but it didn’t. I think I already knew it. He recommended that I stop working. He knew I had a high-stress, demanding job. He knew of my RA and medication issues. I shared with him my frustration with work, productivity issues, balance issues and struggles with adjusting to functioning out in public with low vision. He referred me to the low vision specialist and suggested I start white cane training. Big changes were coming my way.
The ball was rolling. I was partly relieved, partly terrified. I searched for low vision profiles on Instagram. I started watching informative videos relating to vision loss, eye issues related to autoimmune disease and white cane users. I started an Instagram profile focusing on vision loss and autoimmune disease so that I could connect with others in similar situations. The low vision doctor referred me to the Braille Institute for white cane training. She referred me to an occupational therapist and a family therapist. She presented options and tools and gave me advice. We discussed my work and career, the mental and emotional impact of vision loss. There were many discussions and a lot of encouragement around the idea of going on disability.
I stopped working last summer. It’s a major life change and not an easy one. In November 2021, I had cataract surgery in my right eye and opted for a toric lens so that I wouldn’t need to wear glasses for distance vision. I can’t explain how much wearing glasses negatively affected me in the past four years. I now only need to wear readers to see up close, which I realized most women my age do anyway. It’s a small semblance of normalcy for me, yet it has such a huge impact on my self confidence. Vanity? Maybe. My white cane, Lucille and I, are best friends. I don’t leave home without her. She has brought me much confidence and independence. I still struggle with RA issues and medication side effects but now I can allow myself to “be” sick or have a bad day and not worry that I am letting anyone down. I can allow myself rest and find comfort in taking care of myself.
I have a large village of support- our blended family which consists of five children (four adults and one teen) and my pup who is my constant companion, my parents, siblings, cousins, extended family and friends. I would be nowhere without their support, encouragement and much needed tough love. I’ve found that so much of my strength and determination comes from and for them.
I worry about the remaining vision in my right eye. It’s all I have left. My thinking is that if I learn all I can now while I still have some vision, the better off I would be if I were to lose any more. I have a list of places that I want to visit and see in case some day I lose my remaining vision. Prepare for the worst but hope for the best, right?
People say, “You’ve been through so much” and “You’re so strong”. Well, hell yes, I have been and yes, yes I am. Ask me and I will tell you all about it.
