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The Eyes of a Quilter

Check out Maryellen's Etsy shop (link at the bottom) to see her artworks.

I was in my late 20s when I started noticing the shadows on letters.  I had worn contacts for about 10 years at that point, and my vision kept getting worse.  Finally they referred me to a cornea specialist and I was diagnosed with keratoconus.  I did lots of research at that time, and realized I would need to adapt my life to work around the challenges.

I love to sew, and could no longer see to thread the needle.  Or there were 2 eyes and 2 threads.  I discovered sewing machines with built in threaders, and got really good at using regular needle threaders for hand work.  I was also teaching, and was leader of song at church, and played guitar.  I learned to not look at the back of the church, because it took longer to adjust focus back on the music stand.  Night driving became an issue, but if I knew the road well, I adapted.

Corneal hydrops
Over the years, RGP lenses were enough, until the summer of 2013, when I developed a hydrops in my left eye, and could not wear the lens.  A hydrops is basically fluid from the back of the eye coming to the front, and getting trapped in the space below the cornea.  It's like looking through a semi-sheer curtain.  You can see shadows, and the hints of colors, but no details.

Luckily, I was eligible for insurance, which covered the needed cornea transplant for the left, and a new RGP lens for the right eye.  All along, as the KC progressed in the left eye, a transplant was an option, so I was fairly prepared when I was told it was now mandatory. In January of 2014, I had a full cornea transplant, and the procedure went very well.

I was amazed that I could actually see lights without halos, just after 2 days.  After a year of suture removal, and once a day steroid drops, I was fitted for a Scleral lens for the left eye.  What an amazing thing, to go from basically no vision in that eye, to 20/30, because of wonderful doctors and an amazing lens!

I've lived in the NE Pa region for 27 years, and noticed some mountains for the first time.  I went to the movies for the first time in about 8 years.  I was no longer afraid to travel new roads and see towns I hadn't visited.  I started doing craft shows, selling the quilts I've been making (and my quilting improved, because I could see the details better, too).

Then I developed a fast growing cataract, which made the correction with the lens back to 20/70 and worse.  September 3, 2015, I had laser surgery to remove that cataract, and got an implanted lens.  Today, October 14, I got the first new Scleral lens for the left eye.  It still needs tweaking, but I'm so glad I can see again.  I can actually read street signs, and plan to go to the movies soon.  I have a whole new bucket list of things that require good distance vision.  Like a Broadway show, going to the Planetarium, and lots of movies, and driving cross-country.

My advice is to find good doctors who work as a team to make sure you have the best comfort and correction.  Keep your lenses clean, use the products the right way, and don't rub your eyes.  Keratoconus is a challenge, but you can enjoy many things when your doctors are great.  It's about adapting, and staying positive, and finding great doctors.

The above story was shared by Maryellen McAuliffe.
Check out Maryellen's Etsy shop to see her artworks.

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