One of the pictures a local news station took for a piece they did on my story of dealing with Sjogren’s Syndrome, and dry eye. The reason I’m writing this blog post…to let others who are suffering from extreme dry eye that THERE IS HOPE.
Off topic, and a probably the longest blog post I’ve ever done, but in a way it is directly related to the goals of my blog. It’s science related! It’s also directly related to my birding! But more than that, I want to tell my story, in the hopes that it can help other people who have gone through what I’ve gone through over the last few years.
There’s definitely a reason I stepped back from photography, working on my website, and blogging for almost a year. In short…turning older sucks (I recently turned 50). It sucks more when you get hit with a health issue. I was diagnosed with Sjogren’s Syndrome about 3 years ago now. It’s not fun! It’s an autoimmune disease that has variable symptoms, but it generally includes fatigue, joint pain, and most annoyingly for many, autoimmune attacks on the moisture glands in your eyes and mouth. The latter were my first symptoms. It may sound minor, but it can have a huge impact on your quality of life. I’d learned to adapt to the dry mouth that developed soon after diagnosis, because for me, chewing gum provides great relief. I even go to bed every night with gum in my mouth! If my mouth drys out at night, it will often wake me up, but a few semi-conscious chews on the gum and I get relief.
The eyes have been a much more difficult issue to deal with. For 2 years, the dry eyes (my first Sjogren’s symptom) were annoying, but something I was living with. That changed in late summer 2015, where it began to affect my vision. I’d wake up with normal vision, but after a variable amount of time, every day, my vision would get very blurry due to extremely dry eyes. I honestly don’t know where I’d be right now without the solution that I found. I had no desire, or ability, to do bird photography or some of my other hobbies, and it was starting to affect my work in that there were days where I just couldn’t see well enough to work.
Starting last fall, I started working with a (wonderful!!) eye doctor in Sioux Falls, Dr. Hill, who wanted to try fitting a new kind of “scleral” contact lens. I have had glasses since I was 7, with extreme astigmatism, and although I’d tried contacts once before, many years ago, I never found contacts that would stay in the right position and allow me to see well. Dr. Hill was hopeful that scleral contact lenses could both allow me to see without glasses for the first time in over 40 years, but also would also give me relief for my dry eyes.
Scleral contacts are larger than “normal” contact lenses. They extend out into the whites of your eyes, with a ring of contact around the edge, but with a slight “dome” over your entire pupil and iris. Before you put them in, you hold them horizontally with a little suction cup, fill them up with a saline solution, and then put them in your eyes while you’re looking down into a mirror. The idea? That they will cover most of your eye, correct your vision like a normal contact, but also maintain a thin, domed layer of liquid that stays against your eye all day and relieves your dry eye symptoms. I was skeptical at first, to say the least! I was miserable though, was having a very hard time at work, and was willing to try anything. Given my last experience with contact lenses, I wasn’t expecting much!
The whole experience started out rough. Not only do I have bad astigmatism, but one of my eyes in particular was shaped very oddly. It was very difficult to get a scleral contact lens that “fit” the contours of my eyes. As a result, the first scleral contacts I tried would sometimes rotate spontaneously in my eye. Also, because of the poor fit, what’s supposed to be a sealed “ring” around your eye was anything BUT sealed, leading to that domed liquid layer either draining out, or being contaminated with debris from the eye itself. My vision was NOT very good at first, as they didn’t fit right, and would become cloudy with debris finding its way underneath. They also weren’t very comfortable, and after a few hours, I always wanted to take them out. It was discouraging, and my initial skepticism seemed well founded.
I went in for fittings and adjustments at least once a week, starting in October 2015. By the New Year, I was still quite reliant on glasses, and was only wearing my scleral contacts sporadically. Towards the end of December, Dr. Hill told me there just wasn’t much more he could do with the kinds of scleral contacts available at the time…but, he said a new product was coming out in January that he thought just might solve my extraordinarily difficult case.
Again, I was skeptical, but tried to remain optimistic that the forthcoming new scleral contact line would work. January came…and went, without the company releasing the new contact product. Finally, by mid-February, the company launched the new line, a bigger scleral contact that covered more of the eye, was capable of compensating for extreme astigmatism, and provided a firmer fit that basically eliminated the possibility of the rotation issues I was encountering. Dr. Hill set up a fitting for the new line, and a few days later, I was called in to try them out. I was excited that this FINALLY might be “it”, might be the pair that fit my eyes, allowed me to see, and helped the dry eye issue.
I came in for a fitting, tried the contact, and…was immediately disappointed. Once again, as soon as I put the contact in, I couldn’t see at all. Dr. Hill was puzzled, but it became apparent that the contact was rotated in an unexpected way, and thus the astigmatism correction wasn’t properly placed over the eye. I left dejected as he took more measurements and said they’d try again. The next week, I went back for another try.
The day I went in for that refitting is a day that changed my life. I had been quite miserable for several months by then, and had been into Dr. Hill’s office every week for several months. I knew the routine…go in for another fitting, put in the new contact, and then have the disappointment set in as I’d immediately know it wasn’t “right”. I went into that appt. in early March with the same mindset. I went into what had become “my” exam room (I’d been there so often!!), sat down, and tried the new pair.
I COULD SEE!! Right away I knew something was different, in that not only could I see EXTREMELY well, but they were comfortable. Even during the times when the previous versions were “behaving” and I could see fairly well (which wasn’t often), they just weren’t comfortable, and I’d often have to take them out. I sat there and waited for Dr. Hill to come back in the room…excited…hopeful…but still pessimistic that with my next blink, they’d rotate out of position just like every other version I’d tried. But to my surprise, they didn’t budge. Not in the least.
Dr. Hill came in, and could tell how excited I was. He’d been used to coming in to a face filled with disappointment, but when he came in this time, I had a big smile on my face. He started examining my eyes, sat back…and a big smile crossed his face as well. Dr. Hill had been working extremely hard with me for several months, and it was quite obvious that I was a big challenge for him, a challenge that he was in many ways relishing!! On that day, I think he was just about as excited as I was! To be able to help someone with eyes as challenging as mine was certainly a big accomplishment for him, and I will always be grateful for the vast amount of time he spent trying to help.
I was the first person in the entire country to try this new line of contact lenses. The contact lens company themselves became VERY familiar with my case, using my countless visits to help guide the fitting of other patients. I will always be grateful not only for Dr. Hill, but for this company and new line of contacts that became available just when my need was at its highest.
I actually went HOME that day with a pair of contact lenses that worked pretty damn well! It wasn’t perfect, as in one eye, the fit was still a bit off. There were still 4 or 5 more visits back to the eye doctor to tweak the fit, to ensure they were snug against the eye, but not too snug, and were able to “seal” the dome of moisture inside that protected my eyes. By early April, I was done! We had a “final” pair of scleral contact lenses that were comfortable, that I could literally wear all day, and that PROTECTED MY EYES! It wasn’t an easy path! In the 6 months since I started, I had gone into the eye doctor almost 30 times for measurements and refitting attempts. Many of those visits were 1 to 1 1/2 hours each, as they’d try a new contact, wait to see how it settled down on the eye, and then take new measurements to try again.
My eyes themselves are still incredibly dry without the contacts. I wear the contacts from dawn to dusk, taking them out only when I go to bed. After I wake up in the morning, I have maybe 1 “good” hour where I can see with my glasses, but soon, the dryness takes over and my eyes start to get very blurry. But the MOMENT I put in the contacts, my vision is extremely clear, so clear, in fact, that I must say I can now see better than I ever had seen during my 40+ years of wearing glasses. Ever since trying the newest line of scleral contacts, my eye tests showed my corrected vision was BETTER than 20/20!! I often have to refresh the liquid underneath the contacts once a day, taking the contacts out, cleaning them a bit, and refilling them with fresh saline, but that’s an extremely minor inconvenience, as in return, that little moisture dome bathes my eyes in liquid all day and makes my eyes feel (dare I say?) almost NORMAL.
With the Sjogren’s, my eyes are going to be a challenge for the rest of my life, but the scleral contacts have (literally?) saved my life. Without them I was losing my ability to work, to play, to ENJOY life. With them, I’m able to cope with one of the horrible impacts of Sjogren’s. Avera and a local news station, KSFY, actually did a “medical minute” piece on my story, talking about the challenges of dry eye and telling the story of not only myself, but of Dr. Hill’s attempts to solve my difficult case. It was quite the journey, but WELL worth it, and I hope my story gives hope to anyone else out there who might be struggling with Sjogren’s, or with other dry eye issues.
