What is your diagnosis (or diagnoses if you have more than one)?
Ocular rosacea, inflammatory meibomian gland dysfunction (stage 0/no dropout), very mild blepharitis, high InflammaDry MMP-9 result.
How long have you had it?
3 years
What do you wish more people understood about dry eye (or eye pain if that's your main issue) and how it affects people's lives?
I’m fairly well controlled but still have good and bad days. This disease is so expensive. You aren’t visibly disabled (unless you break social conventions with moisture chamber glasses or something), and it can be really hard on your mental health to have difficult painful blinks every few seconds of every minute/hour/day. People want something to blame even though you can have all of your glands and no real reason to have dry eye disease. My dry eyes affect my sleep and my sleep affects my eyes’ comfort. I also really really wish we had comprehensive OTC drug reform and not just the recent sunscreen reform, since I have anxiety about being able to get hyaluronic and ectoin drops if the FDA clamps down even aside from the Miebo/EvoTears anxiety and the shortages of ointments and other drops I’ve used over the years.
What has helped you the most?
I’m fairly comfortable each day with EvoTears, Vevye, semiannual IPL treatments, a manta sleep mask, WileyX sunglasses for driving, the iRestore red light eye mask, and iVizia and Optase Allegro drops. I take fish oil, blink nutritears, and 20mg doxycycline twice a day, but I’m not sure how much those really help. I was also on Soolantra, but my insurance dropped the name brand and the generic is also $400 but without a coupon program, so now I use the probably-weaker lice lotion ivermectin you can get OTC. Miebo was basically essential but got way too expensive with the new year, so I use a scalper importing EvoTears every few months. Vevye was a huge jump in everyday comfort and feels like I’ve always just had an IPL (vs IPL making the months immediately after a treatment feel really good but tapering off in comfort until it was time for a touchup). My initial 4 IPLs gave me my life back, but they’re too expensive to do more often than twice a year and even then are probably inaccessible to many (as is Vevye honestly. It’s about the same cost per month as what an IPL costs me between touchups)
Are there any dry eye resources you'd like to recommend?
I think staying off the dry eye subreddit has helped me a lot. I empathize a ton with the more severe stories there from my initial diagnosis journey, but I think there’s a backwards survivorship bias that can especially effect a somewhat neurological condition where anxiety and depression can preoccupy you and make your symptoms worse. I see a lot of people asking if they’ll ever be “normal” or giving up hope, and sometimes I fall into the trap of wanting to be normal and not have to think about every blink throughout the day. Doctor Eye Health is great and gives a somewhat positive spin on things