Sjogren's Syndrome Sucks!

5 Things I Hate about Sjogren’s Syndrome

Having autoimmune disorders sucks.

I usually do not go on a rant about having autoimmune disorders. I live with them and have a great life in spite of them.

This week I had a problem and so I decided to write this post on what I hate about Sjogren’s Syndrome. I encourage any of you that have this autoimmune disorder and can identify with me to please leave a note in the comments below.

5 Things I Hate about Sjogren's Syndrome #autoimmune #sjogren's #sjogrenssyndrome #drymouth #dryeyes

A hot fork in the mouth.

I have to eat a very bland diet. My mouth is so dry that eating anything with spices is like putting a hot fork in my mouth.

When I first met my husband he took me to a great Chinese restaurant in the Bay Area. He loves Kung Pao chicken, and wanted me to try it. I had one bite and I thought I was going to pass out. My mouth felt like it was on fire and the spice totally messed up my eyes.

Foods that are marked “mild” are not mild to me. Those foods might as well be marked “hot.”

I should buy stock in bottled water.

Does anyone else have the problem of having such a dry mouth that you cannot be farther than an arm’s length from a bottle or glass of water? If I would have known twenty years ago how much water I have to consume living with Sjogren’s, I would have bought stock in a water bottling company.

I met someone a few months ago that has Sjogren’s and she didn’t have a water bottle on her. I kept waiting for her to go get a drink while we were talking, but she never did. All the while, there I stood with bottle in hand drinking after every sentence.

Has anyone ever tried “artificial saliva?” I wonder if the person that invented it, ever tasted it?

Sugar and Sjogren’s

For me eating sugar and having Sjogren’s doesn’t mix very well. If I have too much sugar then I get canker sores and thrush.

It has taken me a while, but ditching the sugar has not only helped my health in many other areas, but it has helped with Sjogren’s. Nothing tastes as good as being canker sore free feels!

Has anyone ever had to use the gargle for thrush that is made up of, Mylanta, Lidocaine, and Nystatin? It goes by a couple of different names. The pharmacists here call it “The Miracle Mouthwash” or “The Standard Mouthwash.” It is very effective. I recommend it to anyone that has canker sores or thrush.

Why are my eyes freaking out?

I had a severe eye infection about twelve years ago. It was one of the worst things I have ever experienced. The infection lasted about two weeks and during that time I had a very difficult time keeping my eyes open. When I went into a bright light, my eyes would close on their own and I couldn’t open them. My doctor at the time thought that this would be a great time for me to try Restasis, the eye drops for dry eyes. That was a huge mistake!

I read on the package after using them for a couple of days, that they are not suppose to be used when I have an eye infection. Oops!

The business of my eyes being dry is bad enough, but almost every hour of every day I feel like I have something in my eye. I get this stuff that actually sticks to my eye and I can see it. It takes a while, but eventually it comes off.

This week my eyes freaked out on me and I finally figured out what it is that has been causing the discomfort. I changed my shampoo and conditioner! That was all it took. This morning I dug out a trial size bottle of Pantene and decided to give it a try. I mean, how bad could my eyes get? They were already a mess, so here goes nothing!

It worked! I washed my hair and my eyes have returned back to normal. The shampoo I used was Suave Daily Clarifying shampoo and conditioner. I have used Suave for years and there are a couple of the shampoos that make me itch, so I don’t use them, but this was the first one that hurt my eyes.

I’m going to switch to Pantene for a while and see how it does for me. I saved the receipt just in case.

Eyes dry out and the nose fills up.

Here is my last rant. I would have forgotten it, but as I’m writing this post, it is actually beginning to happen.

So, I’m sitting here typing this post and I’m using my tears while I write because they are so cotton pickin’ dry. Because I have Sjogren’s I don’t blink enough and that causes problems. Any hoo, by the time I am finished with this post, my eyes will be very dry and my nose will be so full that I have to use nose spray to get it back to normal. And of course while my nose is doing it’s thing, my mouth is becoming drier because I can’t breathe!

Well, enough of this! If any of you are reading this and you don’t have Sjogren’s I have just given you a glimpse into what my days look like. Be thankful you don’t have it.

If you do have Sjogren’s you may have these problems, but they may not be this severe or they may be worse. That’s the thing with autoimmune disorders, we can have the same disorder and share the same symptoms, but have them on different severity levels.

I said in the beginning that I should have bought stock in a water bottling company. After thinking about it, I should have also bought stock in eye drop and nose spray companies.

 

 

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2 thoughts on “5 Things I Hate about Sjogren’s Syndrome

  1. hopeforovercomers says:

    Oh, Brenda. I can so relate. The only thing I haven’t gotten is thrush from sugar. But I certainly have gotten cracks in my mouth by the corner of my lips. I’ve had or have all the rest. I have to drive with one eye shut or I can’t see. Odd. I have my tear ducts blocked to help. I need to use artificial tears more than I do. I can certainly relate to everything you said, everything, except the thrush with sugar. Prayers my friend! 💕

    Liked by 1 person

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