When I was diagnosed as an autoimmune mess, the first name out of the autoimmune mix they identified was Sjogren’s Syndrome. Fortunately for me, I lived in a very tropical, humid environment. This actually made the management of my symptoms pretty simple once I got a grasp on them. However, I have recently moved to a very dry and cold climate. Last night the thermometer reached a whopping five degrees and like any sane person, I turned up the heat and snuggled under my electric blanket.
When I woke up this morning, I opened my eyes and immediately regretted it. The dry heat that kept me from freezing to death or turning into a stiff, arthritic zombie betrayed me. Sand-paper eyes.
Let’s add on top of that the fact that I had taken a nice, hot bath because my joints were achy the night before. Can we just say itch, itCH, ITCH? I’m pretty sure my skin looked like one of the creepy dried out mummies that you see in the museums.
So naturally, I needed to get up and going. My children were already stirring and wondering if they could play. They bounced into my room along with one hyper dog also ready to play. They ask if it’s late enough in the morning to begin playing like the loud little boys they are, and my response sounded something like what I imagine a dying frog’s last croak might. Ugh. Dry mouth. There is not enough water in the world to deal with a sjoggies dry mouth! It is a vast desert of sand just choking out any possible signs of moisture.
It’s not just the inside of the mouth either. Sjogren’s dry lips are more than just mamsy-pamsy chapped lips. They are painful, cracking, bleeding, vicious dry lips. They are like chapped lips that have evolved into their own alien species and I burn through homemade lip moisturizer like you wouldn’t believe to keep up with it!
Along with dry mouth comes dry nose. I literally stick q-tips covered with coconut oil up my nose. Gross. I know. I have found it helps to moisturize my nose though and if I don’t even grosser things happen.
Of course, it is more than just the inconvenience of dryness that makes Sjogren’s such a beast to deal with. It is the way the dryness changes all of the things you took for granted before. Like the fact that your dry mouth causes mint toothpaste to feel like you are brushing your teeth with acid. Forget spicy foods and the worst fate of all, no coffee. As if having an autoimmune disease wasn’t bad enough. Now they take coffee from us! The brutality!
The whole things just makes me want to cry sometimes, but I have to remember not to because
I’m a big girl I can’t.
Sjogren’s Syndrome is a difficult disease to deal with. I am tweaking the management of my symptoms to keep up with the change my new climate is creating in them. While I work on it, I have to find the humor in the situation. After all, laughter is the best medicine and since we can’t cry we might as well laugh!