My Learning Experience . . . as a Patient, Rather than a Provider

[mjones1700]

It has been a while since I've posted here and wanted to tell a little bit about my story, somewhat as a satire or maybe a commentary on my profession, which is health care. I've been involved in headache/face pain clinics for over thirty years and now am the director of one. So what I've learned through my dry eye experience helps me relate to the frustration of patients when they come to see me with their headache problems.

My dry eye story started when I was 18-19 (I am now 57). It is hard to connect the dots and that's not important. I just know that I had a powerful chemical eye burn when a fellow-high school student threw chlorine (for the swimming pool) in my eyes as a joke. My present ophthalmologist says it is not related. However, I had to say home for a couple of days when the mucosal membrane peeled off underneath my eye lids and my eyes were swollen shut for a few days. Immediately afterwards I started to suffer from what I now know as chronic dry eyes. My mom took me from ophthalmologist to ophthalmologist looking for help. The only help I got was when I went on steroid drops but I couldn't stay on them. Finally the ophthalmologist told my mom that I was just attention getting . . . so I shut up about the pain for the next few decades.

Then three years ago, overnight, my discomfort when from a daily irritation to the number one problem in my life with constant burning like fire and tears always flowing down my cheeks. (I'm sure you can relate).

I saw a ophthalmologist here who (based on many things I haven't talked about here) diagnosed me with CDE related to Sjogren's Syndrome. I do have joint pain but it is pale in comparison to my eye troubles. He told me that there wasn't much that could be done for me.

I asked to try Restatis (paying about $150/month out of pocket). I stayed on it for 8 months with about a 40% improvement at first . . . then none. We did 4 pugs . . . 20% benefit. I started to use OTC gel every 30 - 60 minutes and that is helpful. I did the fish oil routine with no clear help.

I asked to try Lacricets. They were more trouble than they were worth. First it is a FB sensation for a hour until they melt. Then it feels pretty good for about 2-3 hours, then it because this gooey mess that I couldn't see through.

I went back to my gel, plus I bought a pair of Wiley (with the foam ring) sunglasses, which helps a lot.

I talked to my ophthalmologist about scleral lens he smirked. He said he could try some large contacts that are thick. We messed around with them for about three months. The problem with them is that they work well for a few hours . . . but several times they adhere to my cornea and hurt like hell. Then I can't get them out and when I do, I must scratch my cornea because it will hurt for a few days. I'm about ready to give up on them.

So I was thinking . . . the thing that helps me most are my Wiley sunglasses. If I only had a pair of indoor glasses that protected my eyes from air flow (sort of like a moisture chamber) it would be a big help. Now I see fine up close but need a prescription for distance (Myopia). So my idea was a pair of indoor glasses (where I don't look like Ray Charles) that protects the eyes, but with a bifocal that is neutral in the lower, close up area so I could leave them on. Right now I have to take my glasses off any time I use a computer, which is about a 1,000 per day.

Here is where the satire begins.

So, I went to our largest optical shop to see what I could find. When I tried to explain what I was looking for, she started to frown.

Lady: "Do you work out in the wind on a rooftop or something?"

Me: "No! I work in an office."

Lady: "That makes no sense. Why would you need glasses to block the wind if you are indoors?"

Me: "Because I have Sjogren's Syndrome and I have extremely dry eyes and I need something to protect my eyes from airflow and to keep moisture near my eyes."

Lady, now looking angry at me. "That is just crazy. You don't use glasses to treat dry eyes. That's what eye drops are for. Have you ever tried eye drops?"

I bit my tongue and left.

Then I searched online until I found a pair of glasses that were stylish and offered a little protection (Oakley B 6), plus I have a plan on how to create a clear latex moisture barrier in them. I went to order them and I explained that I wanted a neutral bifocal lens so I wouldn't have to take them off to read up close. They said I had to have permission from my eye doctor (new Rx with bifocal = plano or the opposite of my Rx).

I called my ophthalmologist and spoke to the tech who said what I was saying made no sense. She put the optician on the phone.

Optician: "What do you want?"

I explained as I did to the previous lady at the other store.

Optician: "That makes no sense at all. You don't use glasses to treat dry eyes and bifocals don't help dry eyes. I have no idea where you heard that bifocals help dry eyes but that is not true at all."

So, she totally missed my point and both of them made me feel like I was a nut job.

So, I'm so thankful that I've learned to listen to my patients and to try and understand what they are trying to tell me.

In the end, I forged my glasses Rx with my proper correction at the top and I negated that correction at the bottom to have a clear lens. Now, I hope I can create my moisture chamber and be able to leave my glasses on when I look at distance and close up, protecting my eyes from as much air as I can. Does this make sense to anyone here? I think you would understand better than they did.

[NotADryEye]

Does this make sense to anyone here? I think you would understand better than they did.

Yes! I'm sure well all understand.

[Guest]

You made perfect sense. Those people at the optical shops just weren't listening - instead, they were trying to figure out how to fit your request into what they usually need to do for people, and when it didn't fit, they tried to convince you that what you were asking for made no sense. What they should have done is tried to understand better how they could help you get what you were asking for.

[farmgirl]

Well, duh, what was their problem? It's not like you were trying to explain that you wanted to get the neutral bifocal to treat your dry eye. Obviously you give up a lot easier than I do because they would have had to listen to me until I was sure that they GOT it and gave me what I wanted. I hope what you ended up with worked...cheers...F/G

[Rebecca Petris]

Sigh.

I was chatting with an old friend (LASIK dry eye etc background) and reflecting today on what has, and has not changed in the last 10 years in the dry eye arena. Some of the things that HAVE changed for the better are ever so encouraging! There's FAR more discussion going on in the eyecare professions about things like meibomian gland dysfunction, rosacea, and even lagophthalmos than there was even 5 years ago. More people are getting information on tear quality, slightly less likelihood that the average person walking in to a clinic with general dry eye symptoms just gets handed an Rx for Restasis and a sample of Refresh without having their MGs even looked at. And there's conversations about things like corneal neuralgia that barely even had names 5 years ago.

HOWEVER, knowledge of the usefulness of protective eyewear for dry eye (especially indoors) is absolutely not diffused through the profession - even amongst the corneal specialists and the hyper aware optometrists, let alone their staff. The very LAST people I would expect to know anything about this need are the optical staff. So nothing surprising to me in your story. The only way they would be likely to get educated about it is if the optical manufacturers were pushing dry eye products. For the most part, optical products designed for dry eye (as opposed to the sports optical mass market) don't exist - exceptions, Ziena and MEGs -, sooooo.... don't hold your breath

[saralynn143]

I urge you to try to find a optometrist who will work with you on scleral lenses. "Large contacts that are thick" are not the same thing. Scleral lenses vault the cornea and keep the eye bathed in a layer of saline. I don't know why opththalmologists are so reluctant to use them. Mine told me that they are only appropriate for people with no corneal protection, such as soldiers who lost their eyelids due to war. I listened to him and lost four years of relief. I have worn a scleral lens (I only need one) for several months. It has been a life changer for me.

I wrote a blog entry about my experience at http://www.sarahartman.com/the-eyes-have-it/ - at the bottom I listed every scleral lens I was able to identify along with website links. Many of them have provider lists so that you can locate one in your area.

Best wishes.

[farmgirl]

I read your blog Sara, interesting and thanks for the list of Sclerals out there.

I have had about all the fun I can stand with babying my eyes and being a Sjogren's sufferer with at least 30 more years to live (God willing) I have decided to investigate Scleral lenses. I live in Calgary, Alberta, Canada and at my last appointment with my corneal specialist he suggested that sclerals were possibly an option for me and told me that Alberta Health had agreed to fund scleral lenses. The other good thing is that there is apparently a man here who is an expert on fitting lenses. He is semi-retired and only takes difficult to fit cases. Unfortunately I am far sighted with astigmatism and as such am difficult to fit with lenses. He said he could probably correct the distance problem but I would still need reading glasses which I am totally OK with. I have an appointment to see him on Monday so wish me luck...cheers....F/G

[saralynn143]

Oh I do wish you luck, farmgirl. I am working on a follow-up blog piece on my scleral experience for Monday, including care tips. I'll be sure to post the link.

There is a multifocal hybrid lens that you might want to mention on Monday, although I'm not sure if it is available in Canada. It's called Duette Multifocal by SynergEyes. The lens list in my blog is for lenses available in the states. Some may not be available there, but there may be other lenses that available to you in Canada but not here.

[saralynn143]

Actually I just checked the SynergEyes web site and Canada is included in their provider search. Check http://www.synergeyes.com/locator/index.php?tab=CA for more information.