Every year Sjogren’s Day is honored around the world. Those of us diagnosed with Sjogren’s want to increase awareness, because this often-diagnosed disease isn’t understood. More people than not have never heard of it, when I share my disease knowledge. And, many doctors are not taught much about it in medical school.
Even my rheumatologist is misinformed. She still thinks that it only causes dry eyes and mouth. I can hardly believe that a rheumatologist is this out of touch with the facts. Sjogren’s has dropped the word syndrome and now is expressed with one word. It’s a systemic disease, which means that it can cause damage all through the body and it is a real disease.
I have Restasis eye drops which are very effective, but they don’t cure the dry eye. They only work if they’re taken every day. The dry mouth medicine I’ve been given don’t work for me. I try to keep a drink with me and some mints. If I’m not constantly drinking or keeping mints in my mouth, my tounge sticks to the roof of my mouth and I can’t really talk when that happens.
Restasis is a very expensive drug and it took me months of failing a different prescription eye drop before I qualified to try it. The doctors gave me an application for a program that lets me purchase this at a reasonable price.
For me, the worst part of Sjogren’s is the unstoppable fatigue and joint pain. The word fatigue is often overused. If you are a healthy person, you will sometimes feel fatigued, but it’s not the same as auto-immune disease fatigue. I had tried to explain it to my husband.
When he was healthy, he tried to understand. When he got stage 4 cancer, he told me that he finally understood what I meant when I said that I was fatigued.
If you think that you or a loved one might have Sjogren’s, it’s not an easy diagnosis to receive. It took about 5 years from my first positive ANA test until I finally received a lip biopsy, which is the test no one will question.
I was surprised when this was my diagnosis, because I was afraid it would be Lupus. Many times with an autoimmune disease, you will have more than one. My second is Psoriasis, which just started in April. I already hate this new one, because it is not invisible.
The Sjogren’s Day is a wonderful awareness day. I hope you’ll all become more aware so that you can recognize the signs of this horrible disease. The Sjogren’s Foundation has a great website where you can learn, shop, and donate to fund research. Sjogren’s doesn’t even have a medication especially for this disease, but we’re given medicine for Lupus.
If you want to share awareness, there are annual walks and many other fundraisers. I’m not healthy enough to participate at this time, but hope that I can in the future.
@2023, copyright Lisa Ehrman