After 25 years of never feeling well, or well-rested, or anything I saw my friends experiencing as "normal life." I finally advocated for myself and am getting some answers. The first answer was gallstones--handled, gallbladder gone! The second was Fibromyalgia, still figuring this one out. And the third is Sjogren's Syndrome. This is, by far, not the end of the answers, but it is a big one.
A Life Full of Symptoms with No Cause
Since my teens, I have dealt with so many health issues, with seemingly no explanation. Problems that made making it to school an accomplishment. Problems that made it hard to focus and concentrate. These things, and more, are part of what turned a gifted student into a struggling student, and a struggling teen. A student that didn't graduated from High School 2 years late. A daughter that always seemed to be acting lazy, not wanting to go to school, sleeping the day away on weekends.
The answer, to so many things I've dealt with, is Sjogren's Syndrome. And, autoimmune disease in general. Sjogren's is one of the most common autoimmune diseases, yet almost no one knows what it is. Venus Williams has it, yet it remains a mystery to most people. Everyone knows Lupus, Rheumatoid Arthritis, and some others. They get 10k fundraisers and national attention. Sjogren's sits there in an awkward silence.
Just Some of the Ways Sjogren's Can Affect Your Body
Typically, if you have heard of Sjogren's, you know the most basic signs of the disease--dry eyes and dry mouth. There is so much more. Those dry eyes can lead to corneal damage, maybe even blindness. That dry mouth can lead to gum disease and tooth decay. The lack of saliva makes it hard to talk or eat sometimes, hard to swallow, with food getting stuck in your throat due to dryness and inflammation of the esophageal lining.
And then there are the neurological struggles: trouble with concentration, focus, and endless fatigue. For some people, the nose is involved with the disease attacking the mucus membranes. This can lead to constant sores and bleeding, a perforated septum, collapsing of the cartilage.
But things can also get worse. Your organs can become involved: lung disease, liver issues including cirrhosis, stomach problems, pancreatitis. And there is also the risk of other autoimmune diseases, especially arthritis and vasculitis.
The Best Place to Get Information
- Sjögren's Syndrome Foundation
Your credible Sjögren's syndrome resource.
Where It Leaves Me
My eyes have been affected for years. I will be seeing the ophthalmologist in less than a week to find out what the damage is so far. And to try to find some better solutions for the dryness and pain. Currently, I no longer drive at night more than a few miles, because the lights begin to halo and it is all downhill from there. During the day the sunlight in my eyes is painful, and I am starting to wonder if I won't be able to drive at all soon. Sometimes my eyes feel like they have gravel in them. They also get so tired. Oh, and there is the lovely response I get during the few hours a week I can manage to work--retail--and I am blinking and squinting and generally looking like a crazy person.
My nose is a disaster. I have a perforated septum (likely a birth defect) that has expanded to about half an inch in diameter. The cartilage on both sides of my nose have started to collapse. This affects my breathing, especially if one of the sides of my nose seals to the septum. I will be having surgery to reconstruct my nose. There is nothing that can bring back the mucus membranes, so sores and pain will always be there.
My mouth embarrasses me. My teeth are falling apart, they will require hours and hours of dental work. My gums bleed. A couple of my teeth have literally disintegrated. I start to talk funny after talking for too long, this is especially rough at work, where I spend most of my shift talking to customers. I suffer from acid reflux and have for years, but have had a few really bad attacks recently. These would not be as severe if there was saliva in my mouth and esophagus.
My fatigue is endless, and has existed for as long as I can remember. I cannot remember the last time I felt rested. And it doesn't help that the disease doesn't leave me with the best ability to sleep. I can feel the fatigue in my bones, in every part of me. Working becomes less and less possible. I am proud of myself when I make it out of bed.
The "brain fog" has haunted me for years. I LOVE to read. I used to read 50-100 books a year, typically more. I have finished 5 books in the past year, and that has been my average for at least a decade. I cannot concentrate, and I am so bleary I often remember none of what I have read. This is what has happened with everything in my life that uses my brain.
My body hurts, everywhere. My joints make me feel like I am 40 or more years older than I am. I now have to sit on a stool at work, because being on my feet for too long leaves me in pain and unstable.
These are the ways I currently know this disease is affecting me. There is no cure. There could be things lurking under the surface.
I don't share this for pity, or sympathy, or to complain. I share it because it is my truth about Sjogren's Syndrome. It is similar to many people's truths about this disease. There isn't enough talk about Sjogren's. There isn't enough talk about autoimmune disease. I share this in hopes of starting the conversation.