So quietly destroying my life and my body.
When you first hear about Sjogren’s Syndrome, when your Doctor first mentions this odd sounding… weird, disease, you’ll be afraid. Of course you will. What the hell is that? But your Doctor, most of them, will be reassuring. It’s not fun, but it’s treatable and it’s “not that bad.”
When you go home and research it, most of the material will tell you that other than dry eye and dry mouth, there isn’t that much to it.
Oh but there is.
There is a whole lot more to it.
It is a life long, degenerative, and for some people who flare constantly, torturous disease. We can no longer make tears, or saliva, to start… which leads to chronic dry eye like you cannot understand unless you have Sjogren’s. You can’t cry – ever – you have no tears. You’ll never again cry from sadness, or happiness. You cannot protect your eyes, they swell up, your vision is going to degenerate and be a constant problem. You’ll get recurrent eye infections. Oh and the best part. The pain. The constant eye strain and pain, no matter how good your drops and eye washes are and how religiously you use them throughout the day.
You will not only have difficulty with light of any kind and need to wear protect glasses all the time or as much as possible, everything will make your eyes worse, reading, wind, dust, just air.
Without any saliva, you’ll spend a lot of time drinking water that does not help. Of course you still need to drink, but you’ll never be satisfied. During my diagnosis and first flare up I assumed I was dying. I drank two 24 cases of water in a day and was still suffering. I called my Rhumatologist in a panic. He told me it was “normal” and drinking so much would make it worse. He increased my Salagen, a medication that helps promote saliva production and it does help a tiny bit, but just a tiny bit.
You cannot swallow probably, your taste buds become damaged and in a lot of cases, people loose their sense of taste altogether. Forever. You’ll have mouth sores and infections, A LOT. Your teeth will decay 10x faster no matter how good you take care of them. Your dentist bills will easily doubled and triple yearly – and you’ll strive to keep your teeth as long as you can.
A lot of people have constantly swollen glands which makes it very difficult to speak and swallow and it hurts constantly. I feel constantly like someone is choking me and will not stop. That’s why I used the word “torture” earlier.
You’ll loose your voice every single day and not be able to speak at all for long periods of time.
You’ll most likely develop a dry cough no matter what you do. You’ll chew sugarless gum, you’ll get the special mouth washes, you’ll suck on sour candies… all these things will be a good distraction, but not much more.
But this is not all of Sjogren’s. It affects your digestive track which no longer produces mucus nor always functions properly. It can cause joint pain, neurological symptoms, kidney problems, just to name a few. This disease can affect your entire body and is much, much, more , than just a little dry eye and cotton mouth.
It’s a life sentence to living in a desert in your own body of which rain will never come.
But you won’t let it get the best of you. You’ll learn to survive. You’ll fight it at first, that’s human nature. But once you accept this desert as your new home – you’ll do whatever you need to to survive and you are a warrior, you know that in your heart.
So while you may suffer in this desert…
You will survive within in it and keep seeking new ways to improve your chance for survival…. and growth, and life.
This is Sjogren’s syndrome.
Begging for rain that will never come.
Dreaming of rain.
But learning to dance in the dust storm instead…