Beauty from Ashes
How my dry eye started
My story starts with several seemingly unrelated events that, in hindsight became the impetus for what is now a chronic condition of dry eye. In 2008 I began to notice certain irritating things with my eyes that I easily remedied. First it was a gritty sensation in my upper lids. A bit of research had me believing it was a stye and I appropriately used baby soap to relieve its symptoms. Then it was unsightly red-rimmed lower eye margins. A purchase of white eye liner to hide what I believed to be a symptom of poor sleep hygiene did the trick. Later I blamed things like: allergies from the nearby agriculture, our furry family members, chlorine from the pool I coached at or maybe burned eyes from the sun. I had no idea that these things collectively pointed at what would eventually be chronic dry eye; more specifically meibomian gland dysfunction (MGD). At first, my symptoms were mere annoyances--noticeable but not life-altering. As a 30-year old I'd used what I knew--Visine "gets the red out.” On really bad nights I'd lay a washcloth over my eyes to sleep. I visited my childhood eye doctor who told me my eyes looked a little dry and recommended "Hydroeye" and preservative-free drops. I began with "Thera Tears" on his recommendation and found instant quenching for my tired, hot eyes I switched from Visine to Naphcon A and only 1-2 times a day when I had to be "social" and not look like kin to a zombie.
How it progressed and what I did
I did not notice an obvious increase in symptoms until I moved from California to Washington State in 2013. I began an online degree program around this time and found increasing discomfort in my eye health. What eventually became the perfect storm was more computer use, chronic insomnia and a climate that promotes a form of dry eye suicide. I found myself awake one morning with my eyelids literally stuck to my eyeballs.
Going into urgent care that day I felt absolutely silly. I knew something was very wrong with my eyes but nobody could tell me what it was, and sitting in urgent care because "my eyes seem dry" seemed like a lame way to spend a Sunday morning. The physician checked my eyes with a blue light, looked for foreign substances and then reported that I had "torn off a part of my cornea" with my eyelid. He prescribed some erythromycin ointment with a, "your eyes just got a little dry, is all". His cavalier optimistic attitude not only reinforced how silly I felt but also falsely made me assume all would be well after using his goopy cure.
All was not well. My cornea did heal but my dry eye symptoms only progressed. My eyes hurt all the time. The burning was pretty severe, but the worst part about the condition was how unsightly it was. My eyeballs were so red and inflamed and tending to them began to be a full time job. Another appointment at a dry eye specialist (we'll call him doctor #2) revealed that my eye issues were the result of blepharitis and he urged me to begin lid scrubs and taught me lid hygiene he also discouraged the Naphcon A. When the lid scrubs gave me minimal relief I visited another optometrist (doctor #3) who first tried an allergy drop (to no avail) and then over time prescribed me steroids of increasing strength. At first these steroids seemed like they were helping reduce the inflammation, but eventually they became a bigger irritant than a help. While under the care of this optometrist I was educated on hot compresses (aggravated my condition), analogous serum drops (expensive and didn't work), he told me that not all preservative-free drops are equal and to shop around, and restasis (didn't work). In desperation I visited my primary care physician and had an array of blood panels ordered to rule out systemic factors--all negative. Next I visited an ophthalmologist (doctor #4) at a dry eye clinic that wasn't covered by my insurance. I wanted answers and I was tired of band-aid methods to my condition. I figured this had to come from somewhere, so where did it come from?! Doctor #4 did a series of tests and was able to educate me more thoroughly on my specific eye anatomy and tear production. I learned there are 3 parts of tears: an oil (lipid) layer, a water (aqueous) layer and a mucin layer. These three layers work together to help maintain the health of our eyes and ward off infection. I learned that while the aqueous portion of my tears was sufficient, the lipid layer in my eyes was not functioning-almost at all, which meant that the tears were evaporating at a rapid pace; however, this doctor had GOOD news and shared that my meibomian glands were 95% in tact and "healthy"...I remember feeling smug, like that adjective was a little too liberal at this point. He shared with me about the lipiflow procedure. It took little convincing to believe THIS was the solution to all my problems.
At the time, the lipiflow procedure felt like a small fortune to pay to get my life back. I found the procedure strangely comforting and my optimism was high. In the weeks following my dry eye was extra awful. Although I'd been warned this may happen initially I was not prepared for how terrible I looked and felt. In the months following lipiflow I did not experience the Solution to my problem. I continued to become increasingly discouraged and depressed about the fact that this may never go away and I wrestled with a lot of anger over that reality.
The hardest part
The hardest part of this condition for me has been how invalidating it feels when explaining it to others. It is not as "socially understood" as things like migraine headaches, chronic pain like arthritis or common known autoimmune disorders like fibromyalgia. In my case my eyes are red and hurt nearly all the time. The difference between days is are they "a little red and irritated" or are they "unbearable red and I am hardly able to function". On my really bad days two things are at play: I'm struggling to be confidently social and be eyeball to eyeball with people I interact with and I'm struggling to even keep my eyes open because the evaporation rate of my tears is so fast that blinking feels unbearable.
Very few people know the extent of what I deal with on a daily basis and I feel that those who do know still do not understand the full effect it has upon a person. This condition has become a full-time job in my life and I have structured my daily living to accommodate it. It takes forethought each day to anticipate how to successfully navigate the day with the least impact on my eyes and resulting insecurity. Here are some of the things I do almost unconsciously on a daily basis:
I have become a master at the weather: I am attuned to the forecast, humidity and wind. I note fires in the area and allergens that I have found aggravate the dryness. If I travel I do the same thing for the location I am going. At least knowing the weather helps me be prepared for the bad days.
I tote around eye drops as if they are my air, food and water. I am never without them and need to use them about once every 20 minutes, including in the middle of the night.
I have become absolutely rigid about my sleeping conditions. Sleep is a huge factor in whether I have an "annoying" day or a "completely dysfunctional" one regarding my eyes.
I am keenly aware of fluorescent lights and try to control environments that I can. This is a relatively new revelation that fluorescents really aggravate the condition.
I'm also keenly aware of scents. I cannot be in a room with candles, wax melts, plug-ins or other chemicals without paying the price.
Looking back on the beginning of this condition I'm not sure if there is anything I could have done as an "if only". Sometimes I wonder if I had the same eye hygiene routine as I have now back then, if it wouldn't have turned into a chronic condition. Sometimes I wonder if this all happened from the years and years of swimming without goggles in chemicals, or coaching swimmers without sunglasses from a pool deck. The way I understand my condition now has come through (4) eye doctors and that seems like a shame. There seems to still be so little known about dry eye-is it an autoimmune disorder? Is it environmental? Is it genetic? What IS it? and it seems frustrating that the medical community knows so much about so many complex things, but this is something that is not understood.
Turning a corner
There are things I have learned along the way through trial and error, doctor suggestion or by accident that, some days, turn this condition into (almost) an afterthought. It is interesting to me how easily I am able to just "join the land of the living" on those days, as if I never dealt with something so disrupting. I have found some things to help overall, although I have never found the "magic bullet" in consistency, even with those things. When I have my best days I am: very well rested, well hydrated, taking my mega-doses of fish oil and collagen (something I'm finding helps) eating things without preservatives in them, I use a lid scrub daily (thera tears tea tree foam cleanser) and stay on top of my preservative free eye drops (Systane Ultra). If I have a heavy computer use day I take breaks frequently and try to find a place without fluorescent lights. If it's a windy day or high allergen day I use OcuSoft Plus eye lid wipes 1-2 times during the day. I don't wear eye make up unless for a special event, and for that I only use Blinc mascara which comes off the eyes in "tubes" with lots of water. I'm mindful of wind, fans and air conditioners and at my best with a humidifier in the room. Being vulnerable with even just one person about this condition has been helpful to me and being and active part of the "Dry Eye Forum" has also been a huge support.
Where I’m at now
I have only recently come to terms with this condition as something that is 1. chronic and 2. going to be part of my life-maybe forever. I hit rock bottom one particularly bad day, finding myself feeling defeated and suicidal over the chronic, never-ending relentlessness of this condition. As someone who enjoys people and is making a profession out of making eye contact I did not understand how I was going to be able to handle dealing with this the rest of my life socially or professionally. It took a strong word from someone I love very much who said, "So you have this thing. You can have it and accept it and decide to live a life well-lived in spite of it, or you can have this, pity yourself, let it steal your joy and let it defeat your attitude day after day-but whatever you do with it, that's a choice". My initial reaction to this was definitely self-pity, "THIS is NOT my choice!" but that's not what this person was saying. He was saying, "It is what it is! Stuff happens! Does it suck? Yes, and it's okay to say so; but the choice is what you're going to do with it!". That's not to say that I have never had another bad day ever. I still get discouraged and can find myself being antisocial or insecure, but the bottom line is, this person was right-how I choose to react to this is my choice. Does it take a lot of work to manage? Yes, but I know how to manage it. Does it make me feel ugly and insecure sometimes? Yes, but my worth is not determined by my appearance. Part of my coping with this is the way I cope with other hard stuff in my life--it's through my faith in Christ. The challenges that touch my life aren't fun! But when it comes down to it-what am I going to do with what I've been given. Will I see it as defeating or can I see it as potential to grow? Every hard thing a person is given in life is an opportunity for a choice. I'm of the belief that beauty can be made from ashes as I allow God room to create it and I want to live my life reframed with that perspective.
Kate
Pacific Northwest