When my world was first changed by uveitis, I had no idea what was coming. I didn’t understand what any of this meant. I knew I had some eye drops but never knew how many and how often. Here is a time line of what I have taken.

November 2018- eye drops for pink eye, then steroid drops four times a day and dilation drops once a day.

January 2019- steroid drops every hour and dilation drops twice a day. Naproxen 3 pills a day.

February 2019- steroid drops four times a day, dilation drops twice a day, drops so that my eyes don’t feel dry, methotrexate (4 pills to start and increasing once a week until we get to 10), folic acid once a day.

It’s a lot to keep track of. Some are painful. I HATE the dilation drops. They burn my eyes but we keep them in the refrigerator so that they cool a little bit. I put ice packs some times to help.

My doctor says that I might have to add more medicines to help with the side effects. I know it’s a lot but they tell me all this will help. Crossing my fingers!

Now that is a crazy word. When I first heard it my brain was rattled. So was my families. We had no idea why this was or what it meant. But we quickly learned and I will share with you what I know.

Uveitis is inflammation in your eyes. (I still don’t know what inflammation is). It causes your pupils to close to protect your eyes.

The exact cause of uveitis is often unclear, but some factors increase the chance of it happening. These include: Juvenile arthritis, psoriasis and other autoimmune disorders, such as rheumatoid arthritis. Inflammatorydisorders, such as Crohn’s disease, ulcerative colitis. But a lot of times you don’t have to have any of these….like me! My uveitis is described as idiopathic. Which means there is no reason.

In The beginning of November 2018, I woke up with my eyes feeling funny. My Mom brought me to a walk in doctor because we figured it was pink eye. The doctor said I had viral pink eye and put me on the first of many eye drops. This is where my journey begins.

After 10 days of doing the eye drops, my eyes were only getting worse. My eyes burned, hurt and were extremely sensitive to light. So off to my pediatrician (who I love!!!) we went. She took a look and told mom we needed to fast track our way to the ophthalmologist. The very next day we went.

It seemed like the longest appointment of my life! He looked at my eyes, he put more drops in, he tested my pressure and he looked at my eyes more. He put some more drops in and then we waited. He looked at my eyes even more! He was rattling off numbers to his assistant and she quickly typed them into a computer. After he was done, they turned on the lights and said the phrase that changed our lives. “Caitlyn has uveitis”. Wait? What??? That’s a Very hard word to say, and for my little brain to understand. Mom and dad didn’t understand it either but began to ask a long list of questions. He told us that we needed to go to another doctor and he had already made an appointment for us.

Over that weekend, my mom started her never ended research. Trying to figure out what this was and how to fix me. On Monday we went to the uveitis specialist. She did all the things the last ophthalmologist did and looked some more. She validated my diagnosis and started me on even more eye drops. I took one drop of steroids in each eye 4 times a day and had to dilate my eyes every morning.

The doctor also spoke to us about needing to see ANOTHER doctor. We went to a rheumatologist. She checked me out, bent my legs, pressed on my tummy and asked a million questions! Then she said I need to have A LOT of bloodwork done. Man, this was starting to get annoying. Just fix my eyes! Why so many appointments? We did all my bloodwork and found out that I do not have an autoimmune disease and that my Uveitis is idiopathic. Great news? Right?

10 days later we went back to the specialist. We got good news! It was starting to clear up and we could taper off the medicine. That lasted for a few weeks. But January 1, 2019 I woke up to the pain and redness back. This was less than a week from stopping all my medicine completely. So, we were back to all the drops but this time every hour for the steroids and twice a day to dilate my eyes. And now adding naproxen to help control the inflammation.

We went through the whole process again. Specialist visits, looking at my eyes for what felt like hours, eye drops, tapering off the steroids and more visits. Again, great news! Things were looking good. But in February 18 it was back! Off to the specialist we went. This time it got real! She said the treatment plan we are in was not working. She said we needed to start a new treatment plan and add more medicine. Mom asked me to wait in the waiting room while they talked. I knew this couldn’t be good. After a while they called me back in. We left that day with more prescriptions and a lot more questions and fears.

Tomorrow I will start my first dose of methotrexate. I’ll keep you posted 😘

https://youtu.be/ij0fQjOQBxo

Hi! My name is Caitlyn and I was diagnosed with idiopathic bilateral anterior uveitis in November of 2018. I know that it sounds like a foreign language to many but that’s why I wanted to create this blog. With the help of my family, I am going to bring you along with us on our journey.

My hope is that I can educate, help or inspire many other children that face the fears I am while going down a road of the unknown.

Lets take this journey together! Please feel free to follow, like, comment or email! We are all in this together!