Washing My Eyelids
Steve Dean is the co-organizer of New York City QS meetup group. He is an avid self-tracker, using different methods and tools to understand his life. About three years ago Steve started to experience inflammation along his eyelids. He was diagnosed with atopic dermatitis and was prescribed a treatment regiment. He created a Google Form to track his symptoms and treatments he was doing every day. In this talk, Steve shares what he learned and how tracking finally helped him understand how to get everything under control.
Google sheet | phone
Washing My Eyelids
About three years ago I started to develop these small little and inflamed red patches on my eyelids and along the eyelid margins as you can see up here.
So what did I do? I went to the dermatologist and the dermatologist prescribed a number of treatments. First, washing my eyelids with Q-tip and Johnson’s baby shampoo. The second thing that he instructed me to do was to buy a bottle called tarsum Gel and shampoo. So this was both to wash my hair and also to use the shampoo; dilute it with some water and use the Q-tips to wash the eyelashes as well.
H also prescribed a topical steroidal ointment that’s called Locoid Lipocream. This was intended to basically tone down some of the inflammation and the redness on the eyelids.
So like a good self-tracker I went about building a Google doc web form as many of us do in the QS community to essentially keep track of the symptoms like burning and inflamed was what I was experiencing then, and the three treatments; the lid hygiene with the baby shampoo and the tarsum gel.
I then bookmarked that Google doc web form to my iPhone screen, and every morning because I could feel the pain of itching and inflammation that was my trigger to launch this little Google doc web form and then fill it out every single day.
What were my symptoms, in this case burning and inflamed and what the treatments were that day that I used.
So the Google doc web form was essentially my tracking tool that I would use, along with taking a picture of my eyelids. So I did tis over several weeks. I had the Johnson’s baby shampoo, I had the tarsum gel. I had the locoid lipocream steroidal ointment and kept track of that.
Several weeks past I went back to the dermatologist and guess what I shared with him. I shared with him a bunch of images and I would walk through this Google doc spreadsheet to talk about how I was feeling, was anything improving. It wasn’t improving. He then prescribed another topical steroidal ointment called Protopic, also meant to bring down some of the inflammation and some of the redness and at this point there were some new symptoms I was experiencing; a little cracking along the lid margins.
And the cracking led me to also be a little nervous that i was going to catch some bacteria form the air because there were some little slight openings on the eyelid margin so I just grabbed some over the counter medication Neosporin. So now I was able to actually expand my Google docs web form. I added more symptoms that I was experiencing . I added more treatments because now I had this new topical steroidal ointment. So along with the Johnson’s baby shampoo doing the daily lid hygiene, the shampoo, the locoid, the protopic and the Neosporin and continued to edit.
So I knew I was as a self-tracker what I needed was this Google doc web form to kind of keep track of what was working and what wasn’t working and I was starting to get a little overwhelmed by all of it.
Went back to the dermatologist with a whole bunch of new images of my eyes and things were not improving, so he came back and he prescribes a new set of topical steroid ointments. At this point I was getting pretty frustrated.
So now I got Cloderm, another topical steroidal ointment. I already had the protopic and I already had the one before that. he also prescribed a new cream which was called Promisen, not a steroidal ointment but it was something like a moisturized to basically try to soften where the cracks were occurring on the eyelid margins.
So now I went back to my Google doc web form – oh there was one more. I also had this over the counter cream that a friend of mine suggested that I buy a the drug store, Dwane Reed, because that was also a way to moisturize around the eye without it effecting the eyeballs. So then I expanded the Google doc web form. I was experiencing more symptoms of crusting and cracking and now I was experiencing a little bleeding on the lid margins. And then the treatment list also became longer.
Again QS tracker, more images. Now I’ve got the baby shampoo, the Q-tips, the tarsum, and the protopic, and the promisen, and cloderm and it just kept going on and on and I thought how do I keep track of all this, so that when I go back to my dermatologist with my deep level of frustration I would be able to have more information to share with him.
Well things got really bad at this point. I then developed a staph infection along the eyelids as a result of a lot of stuff that was going on. So now I had been prescribed antibiotics, so I now had cephalexin and I also had this FML what was a little ointment that would go into my eyes to try and prevent this staph infection from continuing.
So I also wore a warm compress treatment on a daily basis to just try to bring down some of the swelling and try to moisten up, and this was all recommended by the dermatologist again.
In addition to the warm compress I grabbed some over the counter Benadryl because the itching that I was experiencing on the lid margins was also keeping me up at night, and Benadryl has this really powerful effect on me and just puts me to sleep.
So I was having a tough time sleeping at night, expanded my Google docs web form; I now have additional treatments. I now have additional symptoms and you can see how this is beginning to kind of get out of control and a lot of deep frustration on my part.
So now I’ve gone back to my dermatologist, here’s more images of my eyelids, more of the treatments I had been tracking over time. Some of the topical steroids I had done away with. Some new things I was doing, I was tacking the cephalexin for the staph infection, that was improving but the redness and all this was not.
Here I am sitting in the dermatologist office, and he then tells me after all of this frustration that I had, he said here’s a recommendation; get a bottle of chlorox bleach and add a cup of it to your bathtub and start taking baths in it. so I started taking bleach baths.
Within two days this immediately began to clear up. On the fourth day it was completely gone and I had this a-ha moment I wish I had had many months before then.
I had been a swimmer two or three times a week. I had stopped swimming six months before this outbreak occurred. So I realized that this bleach bath was just like chlorine in a swimming pool. So I had made this discovery that for me to keep this essentially a topic of dermatitis at bay I needed to go back swimming. So that is what I continued to do. And when I stopped which is what I did about a year ago it came back. So after a about a month I started swimming again.