My Sjogren’s Syndrome Story: Commonly Uncommon

Mouth Watering Pain

I was first diagnosed with Sjogren’s Syndrome when I was 16 years old. My symptoms manifested for a couple of years prior to my diagnosis. I would develop severe pain and swelling right below my jawline. It would conveniently happen right before I was about to eat something. My mouth would start to water, because obviously I was about to eat something good. Then it hit me, swelling and pain. I couldn’t open my mouth to enjoy whatever food I was about to indulge in, right at the most convenient time. If I tried to sneak in a piece of anything it would make it worse! I couldn’t even sip a smoothie. I had to just ice it down and wait for it to pass. 

Other times, my mouth would be so dry at times I couldn’t even talk. I would eat a shrimp po-boy and have to guzzle down a half gallon of water just to get it down. 

Eye Of The Matter

My eyes would be red and itchy on occasion. Certain makeup bothered me. I was so used to living with weird ailments and bad skin, that I never thought anything of it. I had been seeing an ophthalmologist for several years, because I also had uveitis, which developed from childhood JRA. She was the one who actually diagnosed me with Sjogren’s to begin with. 

There is something called a Schirmer’s test where they put these strips of paper in your eyes for so many minutes and measure the amount of tears your eyes produce. After an uncomfortable 5 minutes, it was clear I had Sjogren’s. 

schrimers test for sjogrens
Schrimer’s Test

Not too much of my lifestyle had to be changed to accommodate this new diagnosis. I was also a teenager, getting my license, and living out my high school drama at this time. Having to put in a few extra eye drops here and there were the least of my worries. 

“It Could Be Related To Your Sjogren’s Syndrome”

The next 10-15 years, I lived my life relatively symptom free. I trialed restasis, and always had artificial tears and a water bottle with me. I took plaquenil/hydroxychloroquine/HCQ off and on during this time. I really felt great most of the time, and every now and then I would get a flare up affecting my eyes. 

I was fortunate enough to never have an overwhelming amount of symptoms and medications most of autoimmune life. However, I am making up for it now. 

Fast forward to my thirties, and I was ready to start having children. Well this is when Sjogren’s really taught me who was boss and made up for our lost time together. I’ll spare you the details and let you venture off to read about my pregnancy with Sjogren’s and how it affected my daughter as well. It is quite the read, so buckle up. 

Blog post - sjogrens syndrome pregnancy
blog post sjogrens syndrome pregnancy

It’s Really Not That Bad..

Having Sjogren’s is difficult. Do a quick Google search, and you will get that Sjogren’s is an autoimmune disease that causes dry eyes and dry mouth. Can’t be that bad right? Why are you even telling me this condition has a world acknowledgement day? 

Sjogren's syndrome statistics
sjogrens syndrome fact sheet

Dig a little bit deeper, and you will find that Sjogren’s is more than meets the eye (no pun intended). Sjogren’s can affect multiple organs and body systems. It can affect so many people, yet each so differently and uniquely. It can stay calm for years, then wreak havoc at the most inconvenient and inexplicable times. 

Sjogren’s can mask more serious illnesses, even though it is the direct cause of these illnesses. Sjogren’s has been so cruel to me. What started out with a swollen jaw and dry eyes nearly killed me.

This World Sjogren’s Day I am sharing my story to bring awareness to this disease, advocate for those living with it, and to let other Sjogren’s warriors know they are not alone. 

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