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Taking Care of Sjogren’s Eyes

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I recently saw my eye doctor for a series of tests. Because I take Plaquenil, I’m required to get eye exams every 6 months. Plaquenil, which is taken to help with the symptoms of Sjogren’s Syndrome, can cause vision loss. My eyes have been much worse lately, so I was eager to get them checked. I really didn’t want to go to the city and go in a busy doctor’s office. But, they had numerous protocols to keep us all safe and separate.

eye

I didn’t have any damage from the Plaquenil, but my eyes are getting worse. Part of the problem is that my eyes are getting dryer. After she tested my eyes and looked through the lenses with special drops, she could see that my eyes were very dry. She prescribed Restasis, which is a prescription eye drop to help alleviate dry eyes.

I should have been able to pick these drops up from the pharmacy, but my insurance is fighting it. Now, I have to wait for them to contact my eye doctor. She has to “convince them that I need these drops.” What a ridiculous thing! Insurance companies are awful, always looking for ways to rip us off. So, I’m sitting here with painfully dry eyes and blurry vision. I hope that the prescription can be approved soon.

Another eye problem I have is that I’m seeing white streaks in my vision. It usually is in my left eye and a bright white flash just randomly occurs. The eye doctor checked my retina and there was no tear. She said that older eyes can have this problem as the connective tissue pulls at the edge of the eye. This sounds like an Ehlers Danlos Syndrome effect to me. She agreed that it probably was the cause.

Since these streaks would need to be coming quite often to mean retinal tearing, I’ll try not to worry about it. But, that along with severe floaters just make my ability to see clearly so difficult. And, late-day dryness makes it very hard to see or read.

Sjogen’s is also creating havoc in my throat. Yesterday, as I was eating crackers I didn’t have a drink with me. I ate a few crackers, but then realized my mistake. The crackers “burned” the top of my mouth and the back of my throat. It is still inflamed today. I guess that my mouth was so dry that the crackers scraped the skin off the roof of my mouth.

eye drops

I also tried to sing along with some Christmas carols and my throat swelled up and is still hurting. Over the last few years, whenever I tried to sing my throat would hurt and feel swollen. I’ve also lost my ability to sing. I can get out a few notes, but need to take a breath after every two words. My voice is very squeaky and I can’t control the sound. I can really see how Sjogren’s is progressing.

My body is gradually getting worse. My arthritis is worse. My Sjogren’s is worse and my EDS is worse. Thankfully, I will finally get to see a rheumatologist in person. I haven’t had any blood work done in over a year. With autoimmune diseases, it’s important to check our ANA and all the other tests that let us know if the disease is attacking our organs. Sjogren’s can attack organs, cause neuropathy, and even lymphoma.

Between these problems and ongoing Mast Cell Activation Syndrome causing so many reactions, I’ve had a hard few days. I’m always happy when I can go two or three days without Benadryl. It takes over 24 hours to get rid of the side effects (even though doctors say that shouldn’t happen) and causes me to feel groggy, dizzy, and sleepy.

As we all try to enjoy getting ready for the Christmas season, I hope and pray that we can have the strength and energy to do what is important to us. We have all things that mean the most to us and our families. We may not be able to do everything that we wish we could, but pacing could help us do those things that bring joy to the holidays.

@2020, copyright Lisa Ehrman

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