I Feel Exposed: Being Chronically Dry
Last updated: August 2023
One! Two! Three layers of lotion on my boy every morning. My friend Melissa and Ben always laughed as they watched me lather lotion on my face as if it were soap. I often dreamed about creating a shower that squirted lotion out of the showerhead. Since my academic years, I’ve suffered from more dry skin and now dry eyes, dry nose, and dry mouth because I have Sjogren’s syndrome.
Data show us many people with lupus develop other autoimmune conditions. I have lived with Sjogren’s syndrome since 2009. Sjogren’s syndrome is a chronic autoimmune disease and inflammatory condition that affects the tear ducts, salivary glands, nose, skin, and genitals. I have dry mouth, dry eye, and dry skin.
Dealing with dry eye
I recently went to the symphony to hear Mozart’s Requiem No.9. I am glad we got orchestra seats so that I could see the soloists. In addition to my visits to the ophthalmologist to determine if I have hydroxychloroquine toxicity, I now see this doctor because I have Sjogren’s syndrome. As a result of both conditions, I feel as though I have grit in my eyes. I am susceptible to eye infections and eyelid infections. So far, both conditions have had an impact on my vision. In fact, my vision has worsened. During my last visit, my doctor indicated that I am developing another eye condition called Anterior Basement Membrane Dystrophy which contributes to my dry eye and changes in my vision.
My teeth are not the same
My hygienist always says, "poor sweetheart," when she looks at my mouth. Yes, I live with a chronic dry mouth too. My hygienist comments because I have chronic dry mouth and therefore my teeth lack its natural mouth wash. I do not create enough saliva to protect my teeth from cavities. So to counteract rotting teeth, I drink a lot of water. On those day in which I forget my bottle of water, I must stop at the nearest convenience store to purchase a bottle of water. If I am walking, I have taken to using a camel pack and always have a liter of ice water next to my bed at night. To protect my teeth even more, I now have lozenges in the car, mouthwash, and a special toothpaste specifically made for people with chronic dry mouth.
My chronic dry nose
Yes, my nostrils are dry as well. Over the last year, I have seen an ENT because I developed tinnitus. My ENT examined my nose, which showed that on some days I developed lots of bloody discharge and other days, a long bloody nose. There are days in which my sinuses hurt and other days in which it feels like a wind tunnel is shooting up my nostrils or oxygen is spinning through my nose on those very dry days. The ENT suggested I use saline solution several times a day.
My medicine-packed day
Given all of these dry conditions, I live by my medical alarm. Every time that alarm chimes during the day, my routine is to put eye drops in my eyes, drink water or use a lozenge, and use saline for my nose. I look like a walking pharmacy when I open my backpack. I hope that one day there will be a cure. I find my bag and my car filled with bottles of Refresh, Systane, or Restasis and now eye ointment. I wear sunglasses outdoors as much as possible to prevent exposure to the sun and I always wear my glasses. The back seat of my car is full of empty water bottles because I can only carry so much to the trash can at a time. I always carry tissue with me in case I have nose bleeds. My doctor is now talking about surgery to cure my Anterior Basement Membrane Dystrophy.
Have there been things you have learned along your lupus journey that you wish had been explained to you by a healthcare provider earlier?