Sjogren’s Syndrome

Aug 01 2018

An anniversary POTD – Saving my sanity with macro photography

Author: DakotaBirder • Discussion: No Comments

In the summer of 2015, I was having a tough time. I was diagnosed with Sjogren’s syndrome a few years before, but I was dealing with it and the symptoms weren’t crippling yet.  That changed that summer, when my eyes were getting so dry that not only was I miserable, but it was affecting my vision. Typically it just got worse as the day went on, although the severity of symptoms varied each day.  Some days, I simply couldn’t see well at all by late afternoon (or earlier), to the point I couldn’t really use a computer well.  Ever since that summer, my work hours have been very early (typically 6-3), but it all started that summer as I couldn’t work very well after mid-afternoon..

It wasn’t until later that winter that I started investigating scleral contact lenses (more in a bit).  But that summer, I was struggling. I soon discovered that if I wore goggles, the dryness was still uncomfortable, but the moisture accumulating in the googles was enough to allow me to maintain my vision.  The problem? I HAD TO WEAR GOGGLES!!  And my eyeglass prescription is so off-the-charts weird, that nobody would make custom goggles with a prescriptions.  That thus meant I wore very big motorcycle goggles over my regular prescription glasses.  It’s a WONDERFUL look!  But not one I felt like sharing in public.

My days that summer were as follows…go to work, use eyedrops literally every 15 minutes, go home, and as soon as my vision started to leave me, I’d throw on the goggles and stay home the rest of the day.   It was…depressing. I wasn’t doing any birding, I wasn’t doing many of the things I loved, because I either felt miserable, or my vision was horrible. But just by chance, earlier that summer, I had bought a very nice macro lens for my Canon DSLR.  I hadn’t really played with it much…until my vision started to go and I didn’t want to leave the house much.

I spent quite a bit of time that summer and fall, just walking through the backyard, and learning to appreciate the tiny little world that had been there all along. I knew nothing about insects (ok, I still don’t know a lot), but I did QUICKLY discover the incredible variety, and incredible beauty, of the little critters roaming my backyard. Many nights I’d come home from work, not be feeling well, and I’d go out in the back yard with the camera. It helped me feel normal. It helped me feel connected to my old hobbies.  It gave me a bit of much needed joy.  As my eyes seemingly got drier and my vision deteriorated, I’d even don the goggles and walk around the yard.  If no neighbors were out, that is.  Pride and vanity is a tough thing to overcome, even when you’re miserable…

It was later in the winter that the scleral lenses (a lens that gives your eyes a nice day-long bath in saline) literally saved my sanity.  Heck, they saved my JOB, as when the scleral lenses are in, my eyes feel almost normal, and my vision is awfully damned sharp. I can still only wear them 12 hours a day at most, so my evenings are still often spent at home, with my lovely fashionable goggles on. However, with the scleral lenses and the return of my vision, I resumed more of a normal life, and resumed my bird photography. I haven’t used the macro lens a lot since that summer, but I will always appreciate the distraction macro photography gave me that summer, a period that helped bridge the period to the salvation of the scleral lenses.

With that…today’s POTD is a macro photo of a meadowhawk (dragonfly) in my yard from that summer. The second photo is simply a crop of the first photo, showing the incredible fine detail the macro lens can resolve.

Meadowhawk - SympetrumMeadowhawk - Sympetrum

Jan 12 2017

My first ever endorsement of, well…anything

Author: DakotaBirder • Discussion: 2 Comments
Scleral Contact Lens

A cross-section that demonstrates the idea of a scleral contact lens. The edge of the lens rests on the sclera, the white of your eye, while the lens “vaults” over the cornea and maintains a thin liquid bath against your cornea. For a dry eye sufferer? It’s heaven-sent.

I had a visit to my ophthalmologist this morning…not exactly earth-shattering news for most people.  Even for me it’s been almost a year since I last visited the eye doctor. The reason today’s visit was notable is because of the contrast of where I was one year ago compared to today.  With Sjogren’s Syndrome, I have incredibly dry eyes.  It goes well beyond simple irritation and the need to periodically use eye drops.  The discomfort is often unbearable, but even worse, the dryness impacts my vision. I have about half an hour after waking in the morning before I start to see double.  I can’t see well enough to participate in my hobbies of photography and drawing, but even worse, I can’t read or work on a computer.  Sjogren’s Syndrome and my dry eyes were strongly impacting my ability to do my job, or participate in what makes life “fun” for me.

A little over a year ago, I started working with a local ophthalmologist. My experience is documented in this very long blog post from last October, and I won’t repeat the entire story here. My eye doctor fit me with scleral contact lenses, a special class of “hard”, gas permeable contact lenses.  They are larger than normal contacts, “vaulting” over the cornea with the edges resting on the whites of your eye.  That vault is designed to provide a tiny gap between your cornea and the lens itself.  When you put the scleral contact lenses in, you look straight down into a mirror, hold the contacts upside down, and fill the bowl of the contact with saline solution.  When the lens is placed in your eye, it effectively seals around the white of your eye, leaving a thin cushion of fluid between your eye and the lens.

As the October post details, it was a long process getting the lenses to fit. Given the extreme astigmatism I have and the odd shape of my eyes, my ophthalmologist said there’s little doubt I’ve been he’s most challenging case (in terms of fitting scleral lenses).  And that’s aside from my Sjogren’s! Checking in a year later, it’s made me realize how much I’ve come to take the scleral lenses for granted.  Perhaps it was just the passage of time and going back to the place I spent so much time a year ago. Perhaps it was having my scleral lenses out for an hour this morning while I was poked and prodded and tested (I am miserable without them).  No matter the reason, today I’m feeling incredibly grateful that at the very moment my happiness and well-being depended upon a solution to my dry eyes, a company just happened to be introducing a new product that was a perfect solution for my difficult case.

I’ve never mentioned the company or the product itself on any social media. Given how it’s changed my life, and given the possibility that other people could potentially be helped, I do want give a shout out to company and product.  The company itself is called “Art Optical“.  They’ve been around since 1931, and have focused exclusively on contact lenses for the past 30 years.  The product that I use is called “Ampleye“.  It’s a product that allows for a lot of specialization…perfect for a guy like me with screwball, weirdly shaped eyes. A few tries with more traditional scleral lenses didn’t go well, while Ampleye was able to provide a good fit.  I wore glasses for 43 years prior to trying scleral lenses, and was worried about comfort. However, once we obtained a proper fit, the contacts were so comfortable that I simply am not aware of their presence.  Given how miserable I am without them, I wear them from dawn to dusk, with little issue.  They do start to get a film on them over the course of the day, and sometimes in the late afternoon or early evening, I’ll take them out and give them a quick cleaning.  Other than that, maintenance is simple, with traditional cleaning and storage as is done with other gas permeable lenses.

Other than the dry eye, my other major concern was my vision.  With such extreme astigmatism, I’m functionally blind without correction.  About 15 years ago, I tried traditional contact lenses, but they wouldn’t work.  It was impossible to keep them in the correct rotation, and with such extreme astigmatism, a rotation of just a few degrees meant that my astigmatism wasn’t properly corrected, and I couldn’t see.  With the Ampleye lenses, they fit “like a pringle chip” (my wonderful eye doctor’s term!).  Because of their shape, they REALLY lock into position, and after I put them in in the morning, they don’t budge all day long.  My horrible vision corrects to BETTER than 20/20, and I’m seeing with a sharpness I never got in wearing glasses for 43 years.

Why am I pushing this out on my blog?  Ever since I started down this path, I’ve come across other people with Sjogren’s Syndrome, and people with dry eyes.  Many have struggled to find relief. Eye drops, protective glasses, prescriptions to stimulate tear production…nothing has worked.  I want to let people know that there IS a potential solution to their dry eyes. If they can find a solution for my dry, screwy eyes, they can help anyone!

One other issue that’s come up with people I’ve talked to is cost.  First of all, note that I was VERY pleasantly surprised at the total cost.  For me, given how many times I had to revisit to get a correct fit, the price was an incredible bargain. Secondly, don’t give up on insurance potentially covering some or all of the cost!  For someone like me, Sjogren’s Syndrome is a disease, a disease with a systematic impact on the health of my eyes.  Dry eye in general is a health issue.  An issue of eye disease.  As my ophthalmologist this morning stated, insurance companies are increasingly recognizing the benefits of scleral lenses and are covering costs.  DON’T let a balky insurance company discourage you!  Fight it!!  And even should an insurance option fail, costs are quite reasonable for what I’ve found to be a incredibly durable, stable product.  As weird as my eyes are and as expensive as it is for me to get regular glasses, the Ampleye costs weren’t substantially higher.

After one year, my ophthalmologist said I didn’t really even need new scleral lenses today. My prescription hasn’t changed, my eye health is good (thanks to these lenses), and other than a couple of tiny scratches that are imperceptible to me, my year-old lenses are rock solid and good to go for quite a while longer!  Today however I did go ahead and order another pair, not because of durability, but because 1) I’m completely sold on the product, and 2) I’m so dependent upon these lenses that I want 2 pairs on hand for “back up”.

Any dry eye sufferers out there who’d like more information, feel free to drop me a line!  I’m NOT being paid or anything to endorse this product!  There’s absolutely nothing I’m personally benefiting from by writing this blog post. I truly just want to share my story, let people know about this product, and let people know that help may be out there for you.

Oct 20 2016

Living with Sjogren’s – Scleral Contact Lenses

Author: DakotaBirder • Discussion: 18 Comments
Scleral Contacts for Dry Eye

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.

Dec 07 2015

A new member for the famed Pantheon of Goggle-wearers?

Author: DakotaBirder • Discussion: No Comments
Famous Goggle People

An artist’s rendition of my new look, sporting goggle-type eyewear, along with famed members of the GPGW…Kareen Abdul-Jabbar, Michael Phelps, and “Gordon” from the movie “Dodgeball”.

Sjogren’s Syndrome sucks.  There’s no getting around that fact.  Been diagnosed about 3 years, with various fun symptoms, but the crappiest one by far are my eyes.  Sjogren’s is an autoimmune disease, which among other things, attacks moisture-secreting glands for your eyes and mouth. Dry eye, dry mouth, fatigue, joint pain and other fun things are symptoms.  My eyes have been god-awful lately, so dry that as the day goes on I have a hard time seeing.  Saw my dr. today, and among other things, he said I really should get protective eyewear that holds in moisture and prevents air circulation around my eyes.

Goggle Time!!  OK, perhaps not goggles themselves, but something similar that seals in your eyes.  I am about to join the Great Pantheon of Goggle Wearers (That’s the GPGW to you).  GPGW inductees must meet two conditions: 1) They must wear goggle-type eyewear a significant portion of the time, and 2) they must be famous.  It certainly looks like I’ll be meeting condition #1 very soon.  As for condition #2?  The very fact that you are reading this blog must mean I’m famous, right?

I certainly expect the inductee paperwork to arrive soon after I don my goggles.  I can hardly wait to join the ranks of these fine, famed folk.

Sep 30 2015

Back in the swing…

Author: DakotaBirder • Discussion: No Comments
Black Skimmer - Rynchops niger - Drawing by Terry Sohl

Colored pencil drawing of a Black Skimmer – Rynchops niger.

June of 2 years ago.  That’s the last time I’ve touched a pencil.  June 8th, to be exact.  I started a drawing of a Black Skimmer, a species I’d only seen a few times, and had never gotten a good photo of.  I thought I’d do a quick and dirty drawing for my website, so I started that evening. I got about halfway done before deciding to finish in the morning.

It was that next morning that I woke up feeling very achy, joints hurting, with my eyes stuck shut from being so dry.  Just like that, overnight, I was introduced to the wonderful world of Sjogren’s Syndrome.  All of my drawing equipment and my half-finished Black Skimmer drawing were put away in a drawer.  And there they lay forgotten for the next 2 years, 3 months, and 18 days.

No, “forgotten” isn’t the right word.  I occasionally remembered the drawing.  I occasionally thought about picking up a pencil and starting to draw again. But I couldn’t bring myself to do so.  Drawing, and this Black Skimmer image, were associated in my mind with the onset of Sjogren’s.  Every time I thought about starting to draw again, it brought me back to June 8th, 2013, and all the “fun” physical symptoms I’ve had since.  And thus the pencils sat for over 2 years.

This past weekend I picked them up again, and finished the drawing.  My biggest issue right now are my eyes.  Very dry, gets worse as the day goes on, which makes it hard sometimes for me to even want to keep them open, and also makes things blurrier and blurrier as the day progresses.  Not ideal for drawing, with either blurry eyes or closed eyes.  I think my drawing strategy will usually have to be doing it in the morning, or up to mid-afternoon at the latest, before my eyes start to get really bad for the day.

In any event, the pencils have been taken out of storage, the Black Skimmer has been completed (as has another drawing, which I’ll post later).

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