From a worrier to a warrior - I am not giving up
How my dry eye started
I started wearing hard contacts in 9th grade. In 10th grade I also had a surgery - scleroplasty- done in Eastern Europe to slow down progression of my high myopia. My dream was to get LASIK done and my mom encouraged me to.
When we immigrated to the U.S. my primary doctor referred me to an eye doctor who specialized in cataract surgeries and Lasic and (Thank God!) he told me I was not a candidate due to my high prescription. I considered him to be an honest, trustworthy doctor and started seeing him on a yearly basis. He switched me to monthly soft contacts.
I remember my eyes starting to feel dry in my mid 20s and every year I told him about it. He never seemed to give it much attention, so I thought dry eye was not a big issue and more of an annoyance.
How it progressed and what I did
In my late 20s I developed some redness and discomfort of my sclera, right after my wedding. My eye doctor didn't know what it was and tried antibiotic eye drops etc. I then went to the university hospital and they didn't diagnose me correctly either. I stopped wearing contacts but even in eyeglasses my eyes were still red and didn't feel great.
By a chance (while shoes shopping) I met a uveitis specialist who worked at the same university hospital and she took me as a patient and told me I had ocular rosacea. I thought it started because of all the wedding stress and going on a honeymoon in August. She said I should use Ocusoft wipes, switch to daily contacts, and see her in a year if things get better. I was so happy my ocular rosacea went into remission shortly after (or so I thought).
When I wanted to see her again, she transferred to another hospital and they wouldn't schedule me with her at the new hospital because she was a uveitis specialist (and I don't have uveitis) so back to my old eye doctor I went...
The old eye doctor never prescribed me any Restasis or Xiidra, suggested any plugs, or any oral antibiotics. He never told me about any treatments such as Lipiflow or IPL. He never referred me to another specialist. In my late 30s, during covid pandemic, I was doing an online Master's program, working much more on the computer, helping my kids with online school, and wearing a face mask... all of which I believe pushed things over the edge. One morning I woke up with swollen upper eyelids. When I went to see my old eye doctor (LASIK specialist) he mumbled something like: "I think it's an eye infection... hopefully not your glands... let's stay optimistic."
The hardest part
The hardest part was that those were my glands that were affected and I didn't even know they existed! The hardest part was to hear: "well, you had dry eyes for many years... what did you want?" from the doctor whom I saw on a yearly basis and who wasn't treating it well (nothing beyond recommending fish oil and giving once a sample of eye drops that contained preservatives and made things worse). I felt that he and the whole office was trying to cover things up. I am just glad that he never did my LASIK.
He then referred me for an IPL and the corneal specialist treated me terribly too. My eyes felt worse after IPL (no expression was done because she refused to do it) and she told me not to use anything other than non preservative eye drops so we could see if IPL was making a difference. My upper eyelids started getting even more swollen and my eyes felt more dry and my eyelashes started thinning and looking crazy - I think IPL with no expression created more inflammation and I wasn't taking any steroid eye drops right after it.
I started getting progressively more and more anxious and depressed...I was only in my late 30s, had a job that required me to work on the computer, and two young children who needed me. I stopped sleeping. I quit my job. I wished everything was over. I felt worthless and guilty - it should have been me learning more about dry eyes and management, learning that ocular rosacea is a chronic condition, learning that it goes hand in hand with MGD, learning about all different treatments etc and not just relying on an eye doctor. I felt like I let myself and everyone else down and life wasn't worth living when I felt and looked awful and couldn't do things I previously could.
Turning a corner
My husband was extremely supportive. He found this website, he told me about Tearfilm & Ocular Surface Society (TFOS) reports and found me a new wonderful corneal specialist at the same university hospital. I forgave myself - why did my eye doctor not treat my issue appropriately; why did the uveitis specialist not explain to me that ocular rosacea doesn't just go away, told me to follow up with her sooner, refer me to my current corneal specialist years ago since he was the same university hospital; Yes, those were my eyes to take care of but at the same time I am not a board certified ophthalmologist.
I think it's important to find a good corneal specialist who will listen to you, believe your symptoms, and take time with you when you have dry eyes. My corneal specialist did a lot of tests and showed me how my meibomian glands looked - I have atrophy and drop out of my lower eyelid meibomian glands (more than 75%, which classifies me as severe). I also started treatment for my anxiety and depression.
Where I’m at now
I follow a treatment plan by my corneal specialist and see him on a regular basis. I use warm mask 2 x day, I blink and massage my eyelids. I use Optase wipes 2 x day, metronidazole cream, take doxycycline 40 mg, serum tears 4 x day, use eye ointment at night and use humidifier or night googles. I limit my computer time to 4 hours a day with regular breaks and 20-20-20 rule. I blink more. I don't use any eye make up. I drink more water. I sleep more. I found out that IPL with expression works better for me and Lipiflow treatment I did once helped too. I am now able to wear my soft contacts again. I invested in nice eyeglasses and just ordered moisture chambers glasses for those cold and windy days when I want to walk outside. My eyelids look better, my eyelashes look a little better, my cornea healed and looked better at my last visit. I am back to working part-time and I was even able to take a family trip to France last summer and guess what - not only my eyes didn't feel worse, they actually felt better on a trip! My dry eye issue put me through hell but in a way it made me a better person too. I still have some better eye and mental health days and some - worse but I know I am not alone. I thank wonderful people like Rebecca and Aidan and my wonderful dry eye buddies. Best advice I got here: "take one day, one hour, even one minute at the time" and "don't believe everything you think" and "even when things don't get better, WE get better."
And I will conclude this with:
"The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep."