More on Dry Eyes: FL-41 Glasses

When I tell people I see the world through "rose colored glasses" I mean it literally. Many people with Sjogren's and dry eyes also have light sensitivity.  FL-41 tinted glasses are glasses with a rosy tint that can help people with problems including light sensitivity, blepharospasm, and migraine headaches. In addition, to the attraction of the optimistic metaphor for someone dealing with illness, these glasses have been a great help to me in improving my ability to do more with my eyes daily.  While researchers aren’t exactly sure why the Fl-41 tint helps those with light sensitivity, they think it may have to do with blocking green and blue wave lengths of light.  I found that these lenses are an alternative to my wearing sun glasses indoors and in the evenings. They make it easier for me to read, work on a computer, and be in an environment with very bright lights. 

FL-41 tinting is available through the University of Utah John A. Moran Eye Center; you can mail your glasses to them and have them tinted for $25.00.  If you are understandably ambivalent about changing your glasses without knowing if the tint helps, you can opt to have a clip-on made that fits your existing glasses for about $125.00. If your glasses have a glare resistant coating (which mine do), they cannot be tinted so you have to go with the clip-on option.  Within about 10 days of sending my glasses to Utah, my FL-41 clip-on and glasses arrived safely back to me. You can also have your glasses customized with darker or lighter tinting depending on whether you want indoor specs or sunglasses.  

You can see the before and after pictures of my glasses with the FL-41 clip above.  I call them my John Lennon glasses because they do look a bit alternative and funky, and I mean that in a good way.

Check out the Moran’s Center website here for more information: http://uuhsc.utah.edu/MoranEyeCenter/patientcare/FL-41_faq.html. 

Dry Eye Rituals

  

I know that dry eyes are a major problem for Sjogren’s sufferers.  For me, they have been a HUGE impediment to reading books or using a computer and hence returning to my work, which was highly research intensive.  Like most of my Sjogren's symptoms, each day is not exactly like the day before. One day I might be able to read for a couple hours, but then the next day my eyes will ache and hurt  no matter how many times I put drops in them or “keep them watered” as I like to say.  I also have some corneal damage, probably due to Sjogren's, which makes the pain in one eye more severe than the other. My eyes have windows of opportunity and I try to take advantage of them and then rest my eyes when they are beat and painful.   I thought that I would share my eye rituals and some of the products and techniques that I have tried to deal with the dryness.  I would love to hear your suggestions and how you combat your dryness.

Eye Drops -- Drops, Drops, and more drops.  If you spend any time with me, you will be sure to see me putting drops in my eyes. 

a.       I use over-the-counter (OTC) eye drops about eight times a day.  I tried almost every OTC eye drop over the last few years and the only ones that don’t cause burning and discomfort for me are Refresh Endura by Allergan.  They contain the same ingredients found in Restasis without the medicine cyclosporine.  I was mortified when Allergan replaced these with Refresh Optive in the United States Market.   My eyes were unhappy, dry, and uncomfortable.  It turns out that Allergan had stopped selling Refresh Endura in the US; after much Internet sleuthing we learned that the drops are still sold in Canada by www.well.ca. My eyes are very happy to have Refresh Endura again.  I know that OTC drops are a personal preference and everyone’s tears are different, but if there is anyone out there who has been looking for Refresh Endura I hope this helps.

b.      I also use Restasis four times a day as prescribed by my eye doctor.  The active medicine in Restasis is an ophthalmic solution of cyclosporine--an immunosuppressant used to prevent organ rejection in transplant patients and for autoimmune conditions such as rheumatoid arthritis.  These drops made a big difference for me as well and, sometimes, when I blink there are actually tears.  

c.       My doctor has also prescribed Lotemax by Bausch and Lomb, a corticosteroid eye drop to use only when my dry eye pain is extremely severe.  It is only to be used sparingly because it can result in side effects such as glaucoma and changes in eye pressure.  So, Lotemax is an option of last resort for me, and I only use it at most a few times a month.

In the evening, I always use a lubricant eye ointment.  My current ointment of choice is Refresh Sensitive PM, but I have also used GenTeal PM Lubricant. There are many others as well.  The ointments are a bit gooey and they make it hard to see. I always put the ointment in just before bed when there is nothing else that I need to do that night. Without using these ointments, it becomes very hard for me to open my eyes the next morning.  If I forget to use it one night, my eyes  feel like they are sealed shut and are then uncomfortable for the rest of the day.  Not worth it to forget the ointment.

Alas, my eyes are telling me it is time to stop or they will rebel and really start to hurt.  I am trying to learn to stop when my body starts to tell me to... so more on dry eyes in my next post. 

Exhaustion Day

Today, I am exhausted.  It feels like I was in a fight yesterday and got beat badly as every muscle aches.  My shoulders feel heavy and every movement takes energy that I don’t have. I am still always surprised by these days. They seem unreal to me -- a once super hyper energetic gal who did not know what to do with her energy. It is also hard to fathom how quickly my energy can change and super exhaustion can takeover.  Yesterday, I was able to make it to the grocery store in the morning and then in the evening walk a few blocks and grab dinner with my husband and walk back home.  I was quite happy even excited that we were able to do something “normal” and spontaneous like we used to before I got sick. But today is a completely different ball game. I don’t have the energy to leave our house and lying down is the only position that is comfortable. 

When these awful days, coincide with football – I am thankful.  TGFF (Thank Goodness for Football). From growing up, my dad was always a huge sports fan and he passed the gene along to me.  We watched lots of basketball and baseball and went to a fair number of games.  But football was never a particular favorite, until I met my husband who is an avid Giants fan.  Now, I would rank it as my favorite professional sport to watch on TV and it is tied with March Madness.  So why is football therapeutic on these exhaustion days?

Even though I am unable to move, I can root for these aggressive guys doing everything to win.  The games are exciting with Hail Mary passes, interceptions, and turnovers and the winner of the game can often be determined with 60 seconds left in the game. It’s fun to be able to talk to my husband when he comes back from a game about something he is so excited about.  Take the Saints versus 49ers playoff game (probably one of the most amazing games of the season), where both teams scored touchdowns within the last two minutes of the game. It didn’t end until Alex Smith put San Francisco on top with 9 seconds left.   I got sucked into the excitement of the game and felt a part of something both communal and energetic.  A welcome reprieve from feeling bad about my exhaustion, even though I never had to leave the couch. 

So it is with great anticipation that I get ready to watch the Giants (my favorite team) play the Patriots in this Sunday’s Super Bowl in a rematch of Super Bowl XLII, but once the season is over I will surely miss how football fills some of my exhaustion days with vicarious energy. 




















*Photo from Google Images*