I have Sjögren’s Syndrome. My white blood cells attack my salivary and lacrimal glands, creating chronic and extreme dry mouth and dry eyes. In my case, I also suffer from extremely dry skin, which has been attributed to the disease, since no other cause has been found to explain why my skin gets so dry it physically hurts. It is Primary (not related to any other autoimmune disorders) and probably the result of my PCOS, since PCOS creates a low estrogen environment and high autoantigens which can cause the disease. On top of this, I take clonazepam daily, a medication known for causing chronic dry mouth.
I’ve tried Biotene and other medications that are supposed to reduce chronic dry mouth. I have tried Restasis for dry eyes. None of it has helped. So, I don’t treat the symptoms and I continue on with life, giving them very little thought.
However, I drink a ton. When I say this, people think “oh, so you drink about 70 ounces of fluid a day, that’s a lot.” Um, no… I drink about 100 ounces of fluid a day. Honestly, it’s a big contributor to my being overweight. The one time I became dehydrated, I lost fifteen pounds in less than 2 days. Should some unthinking doctor shove an IV in my arm and start pumping me full of saline solution, it takes less than three hours for my hands to swell so much, that my fingers can’t bend and the skin begins to ache from the stretching… They refer to it as “hyper-hydration syndrome.”
Back to the point. I do drink a ton of fluid, most of it in the form of soda. There’s a reason for this: I’m allergic to milk (although, I do love it), fruit juices make me feel sick (my stomach has issues), and water tastes like sucking on dirty pennies. Tea is just sucking on dirtier pennies. My other big allergy is to metal. And having spoken to several people who are allergic to metal, I have discovered that we seem to be hypersensitive to the taste of minerals in water, tea, and coffee. None of my metal allergy compadres drink these beverages. It is very hard to drink distilled water, I’ve tried. Even cold it is a strange taste. I don’t enjoy milk substitutes (Silk, Goat’s Milk, etc). So, there isn’t a whole lot left for me to drink.
But if I don’t drink, I pull the skin off my lips when I go to talk, because my mouth is so dry, my lips stick to my teeth like they’ve been super glued. If I don’t drink, my tongue actually feels like it is swelling and it becomes hard to move it. If I don’t drink, it feels like my mouth is full of sand and it does have a gritty dryness that is unpleasant at best.
Doing the math is depressing. Since I drink around 100 ounces of fluid a day (sometimes a lot more), I get about 1500 calories from my drinks alone (even switching to something like V8 Splash, I still get 1000 calories a day from drinks). That means it doesn’t matter how healthy my diet is, I am getting way too many calories.
And everyone knows the solution: Drink more water, there’s no calories. So, do this: Reach into your pocket, grab some change, stick it in your mouth, and start drinking water. Then come back and report how many ounces of water you managed to drink with the change in your mouth. To me, water even smells like pocket change. How does one drink something that smells like pocket change, let alone tastes like it?
So, my exercise routine is going to have to include a way to burn that extra 1500 calories a day… Ouch!