Diary of a Dry Eye Shop

Posted by Rebecca Petris on

Monday

Ally learned last night that she has to report for jury duty. Oooooh. She had told me it was coming up, and I have no excuses for why I didn't have it on my calendar. No problem, it just means I'm manning the phones and front desk for at least one day (or as long as the case goes if she gets selected). 

It's a beautiful, bright sunny day here and supposed to reach 70 degrees! After a very long very cold VERY snowy - repeatedly snowy - February that stretched well into March, we are more than ready for some unseasonable warmth here. 

I started out the day behind and it only gets worse from here. The bright spot in my day is that as soon as UPS shows up (betweeen 4 and 430) I am fleeing the office, heading to Port Townsend out on the Olympic Peninsula. There's an ancient military fort on a hill, converted to a state park, that I love. On, or I suppose I should say in, that hill are some abandoned concrete bunkers that have the most incredibly great acoustics. I have a secret singing spot there. I used to go at least once a week, but work has been so intense this year that I don't think I've been even once since Christmas and I am desperate for the getaway. Something to look forward to all day.

I enjoyed a call from Ronnie this morning... Ronnie is a longtime customer with lupus and Sjogrens and scleral lenses. She's one of those people who are just so delightful, so appreciative, so kind, you just feel like a million bucks after a 20 minute conversation. What a great way to start what's looking to be a ponderously challenging week.

Oh hurray, Ally didn't get picked for the jury so she'll be back tomorrow.

Meantime, I made it to Fort Worden. The sun was getting low as I was coming back down the hill. I love these longer days! I can't drive after dark, so winters here are pretty limiting.

Tuesday

One of those days that you just want to forget as quickly as possible. Especially the three-plus hours of my life lost on text, on hold, and on the phone with two software companies simultaneously trying to resolve a complicated email hosting problem for the Foundation. (Meantime, practical Roz had already just made a gmail account to tide us over.) While I, in my frustration, got stubborn and attempted to knock virtual heads together to get the companies to quit blaming the other and just FIX IT. Unsuccessful, and a complete waste of time. 

So, by 5pm, I was absolutely primed for Dry Eye Happy Hour. Just Roz and myself this time. I've been so battle-weary with business issues that it was a real delight to set that all aside and talk about the Foundation. We have our tax exempt status and it's time to move forward! We resurrected old conversations about how to staff our board. I simply can't believe it's already late March! 

Wednesday

There was the call with Pamela. I've known her quite some time, but we got to chat more than usual today. At some point in the conversation I felt myself switching gears and putting my Foundation thinking cap on. Corneal diseases, from keratoconus to dry eye (and the combinations!) can be so isolating. It's so important to be able to connect with people who understand. For some few, they're both emotionally and physically isolating. Inability to drive can leave you feeling very cut off, especially if you're not within reach of any public transportation, as in Pamela's case. I know many people who are housebound by dry eye as well. 

So that conversation let to a conversation with Roz, who has her sights set on the Lions. I wondered aloud: how could we get isolated people connected? Support groups by phone, by video conference? Maybe. How could we help people get to a support group meeting physically... so much better to see people face to face if possible. Can we start gathering information on services to connect people with transportation, and create some resource pages on the site? I think that a lot of people who are relatively newly disabled by eye stuff may not know what's available, or may even be too depressed to put a lot of work in on researching services. All good food for thought.

Unfortunately, I was sitting at Ally's desk (she was gone for the day) when I got on the phone with Pamela, so I wasn't within reach of Alexa gently screeching at me about a phone consultation with Anna on the calendar. Oops. Anna was so gracious about my being half an hour late! New to scleral lenses and MGD, and brimming with questions... I really enjoy those calls. It's always an interesting challenge, too, navigating between peer advice and medical advice, finding recommendations I can safely make but also help construct a list of questions for the next doctor visit.

Thursday...Friday...

...a blur that went by too fast.

Keratoconus Familiy Symposium (Houston, Saturday)

I left work early on Friday afternoon and headed to the airport to fly to Houston for NKCF's Keratoconus Family Symposium. This was going to be a 5-hour flight... always a bit of a conundrum. I *really* don't want to be wearing my lenses for that long in an airplane as I know they'll be miserable halfway through, but I also *really* don't want to try removing lenses in a middle seat. As for the lavatory... (shuddering). So I left them in. Towards the end of the flight I was dousing my eyes with ScleralFil every so often.

We arrived in Houston well after midnight and my Uber got to the hotel close to 1:00, then up at 6:00am. When I headed over the the University of Houston campus later on, I got to see a lovely sunrise...

The Keratoconus Family Symposium was wonderful. I really like the whole idea of those events. Here's what they have going for them:

  • It's just a morning, so it's not overwhelming nor terribly costly.
  • It includes breakfast, coffee break and lunch, so there's lots of opportunity to chat both with other patients and with the doctors. 
  • There are big picture talks and in depth medical presentations on keratoconus.
  • There are presentations on practical topics such as what you need to know  to get the most out of your insurance for this particular disease, and dealing with depression. At a similar event in North Carolina last year, there was a presentation on low vision aids. 

This was the third event of its type that I had been invited to speak at, and I talked all about practical issues scleral lens users (or prospective users) face. I am nobody's idea of a good public speaker... I am an introvert, and I can get going on one subject for too long, but one thing I know I always have going for me is relevance, because as a scleral lens user myself, and talking to fellow scleral lens users every day, I am acutely aware of the issues we face! 

I enjoyed all of the presentations immensely. We had Mary Prudden, the executive director of NKCF kicking things off, and Dr Tom Arnold, who is a moderator in our Facebook scleral lens group and is extremely knowledgeable (also a great presenter... doctors often seem to have difficulty gearing their presentations for patients but Dr Arnold is a pro at this!). We had Dr Maria Walker from University of Houston, who is amazing, and Dr Matt Kauffman also from UofH who did a great treatment roadmap presentation, and we had a cornea specialist ophthalmogist from Baylor, Dr Sumitra Khandelwal who was extraordinary and talked about some exciting new research areas. Dr Jason Marsack gave an excellent presentation with his unique perspective as both a researcher and a keratoconus patient. And we had Dr Pihlaskari presenting on emotional issues of KC.

But meeting fellow patients is always the key highlight. Lots of great conversations, always wishing there was time for more. I don't have keratoconus myself, but my vision issues are extremely similar to KC vision issues (I have tons of irregular astigmatism, light sensitivity, etc) so I always feel right at home in the KC crowd.

The KC world has been very, very rapidly shifting in favor of scleral lenses. For so many KC patients, if they're not already in sclerals, they're at least aware that they may need to in the future.

Anyway, then another flight back home... this time my eyes really were toast (not getting enough sleep always makes my next day with sclerals harder). Once we landed, I headed for a lav to take them out and "redo" them before the 1.5 hour drive home. Made it home before midnight. 

Another week at the dry eye shop & zone. 


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