Chronic Dry Eye Mystery: Deciding to Play Detective
Last updated: February 2023
Two years ago, I was diagnosed with chronic dry eye and blephartis. My improvement over the past two years was not only minimal messy with ups and downs. I was getting frustrated and my eye doctor wasn't being real forth coming with options. Also, I felt a certain amount of judgment that I wasn't doing enough of her suggestions. I felt frustrated and unheard. So my patient advocate self grabbed a notepad and magnifying glass and went on a search just like a detective.
Finding new tools
First, I went through the posts here and found what worked for others so I could purchase helpful items available "over the counter". My eye doctor just told me to scrub my eye lids with a warm washcloth and use it as a warm compress. However, this made my eyes feel worse so honestly, I wasn't compliant. It was time for a new plan. I bought an eye mask that has gentle moist heat (watch the video that helped me here).
After seeing the video about NuLids, I decided to purchase and my eyes felt so much more clean and less irritable. I also both love and dread the feeling of my glands being massaged. In the moment it's uncomfortable, but it does help my eyes feel better.
Dry eye and HRT?
The last piece of the puzzle I discovered was my HRT (Hormone Replacement Therapy). I was talking to my mom about my chronic dry eye and she mentioned the connection with HRT. I looked into it and she was right. So I talked to my nurse practitioner about getting off my HRT. This was a huge leap of faith as I'd struggled with my hormones and was finally in an ok place with them. I was able to taper and completely come off the HRT which made my nurse practitioner really happy. When my appointment day came, I'd been off my HRT for about 2 months. I was both dreading and excited to see what my doctor would notice.
The time had come for me to know if all my hard work had paid off. Honestly with how my eyes feel I struggle to know if things will be better or worse according to what she sees. I have other conditions that make my eyes uncomfortable most of the time. Her first news was my tearing improved from 1 second to 4! She was over the moon excited. Next she told me my vision was back to 20/20! She actually asked me about my routines. I explained the NuLids device, the heated eye mask and finally told her about the HRT. She goes on to tell me that she did research on this in college and so she knows all about it. My HRT was on my medication list - she went through the list and told me to get off the allergy eye drops, never said a peep about my HRT. Because of my progress she told me she noticed another eye condition and gave samples of drops. Looking at my chart to get accurate information I find I have a new diagnosis: Anterior basement membrane dystrophy. Sadly she did not explain much so I will continue playing detective.
What have I learned?
The list of questions is so important. The HRT should have been discussed long ago, but honestly I kept putting it off because I felt that if it really was an issue, she would say something like she did about the allergy eye drops.
Learning about my conditions makes a difference. Finding ways to manage that help me be compliant is more important than doing it the "doctor's way".
Listening to other patients really paid off for me. She didn't think I needed to spend the money on NuLids or the heated eye mask, but I did. The wet washcloth was making thing worse for me and these items are helping.
Always read my doctor's notes in the portal. I feel I don't get all the information I need to know in the appointment. I find this frustrating, but lesson learned.
Has having dry eye helped you better advocate for yourself?