Sharing too much about Sjogren's
- darlaclement
- Mar 21
- 4 min read
Updated: Apr 29
My husband said that what I wrote this morning was too personal. So, naturally, I created a blog blog about it.
Even though it is private, it's too rich not to share.
And it makes me wonder. Have you had a day that changed your life in one moment? In one second were you one way, and then the next another?
If so, I hope that you post a comment below.
A Kraken at a Tea Party
My neighbor’s blond hair shimmered in the morning light, so I squinted real hard to see what she was doing. Hmmm, she’s packing her car, I wonder where’s she’s going. And I text her, What’s up?
A squirrel scampers across the garden, its tail quivers behind it. A robin with a fat worm on a dogwood limb. And a fresh spout of blossoms dots the tree, with more to follow.
This is a normal day. On the outside anyway. But the inside of me is flooding with changes after taking a tiny pill called Pilocarpine, 5mg.
I'm drowning!
Leaning back in my chair, grateful that I had the foresight to stay at home when I took this tiny little insignificant-looking pill. I'm not at a fancy tea party or southern brunch when, after years of drought in my mouth, my lungs, and stomach, suddenly, there's a rush of saliva in my mouth.
My breathing quickens, so I take practiced yoga breaths to slow it. If I swallow wrong, I might drown. It can happen with a drop of water, I’ve always heard. What if I asphyxiate from what’s in my nose. Is that the right word? Never mind it doesn’t matter if I get the word right. I’m home alone and no one will know that I’m gone for a couple of hours.
Is this how other people feel? People who have glands in their mouth that work? And I picture my husband sipping raspberry iced tea. Does he have this ocean of water inside his mouth at all times?
Opening my mouth to witness a strange sight through a mirror. Saliva, so much that it bubbles and runs over my tongue, river rivulets that stream across dry dirt. My tongue still feels dry and sunburned, but the light shines on a tiny, clear bubble in my mouth!
What will happen next? Is Sjogren's gone?
Saliva is going down easily. That's helping my central nervous system relax, and I realize that I am indeed not going to drown.
My esophagus is starting to feel moisturized. But I still have a dry spot just below the base of my tongue. Right before the lung opening starts.
And now for my stomach. It's like the stories of a kraken in the middle of an ocean. One that's been asleep for centuries. And it wakes up with rumbles and tumbles.
And then that shakes the guts. And the guts are moving about and unleashing their power.
I'm slightly nauseous and cautious that this medication just might work. But only time will tell, and when I can get off the toilet.
Oh and…I am used to drinking at least 8-10 cups in less than 20 minutes at a time, and I'm looking at this glass of water thinking, I don't think I can drink that whole thing. It looks like a lot of liquid.
I thought that I was finished! Do I still have Sjogrens?
Ohh, and I'm not really burping as much. Off to the toilet!
Still have a cough from that one spot, it's just not dry. I wonder if that will smooth out, too.
And I've only burped once in an entire hour. And I don't feel like burping at all. And the dry cough is gone, I think maybe. And I haven't farted like a slumbering Kraken.
A burp is coming on…nope, my body took care of it, just like a real southern woman. One that has been raised and trained since birth.
The doctor told me that I would sweat. And it’s started. But it’s not a smelly sweat. It's okay, and if I wear black, then the other women of the south won't notice.
And I glance in the mirror to see if I'm flushed like the doctor said that I would be. But then decide, I don't really care. It's much better than the loud public explosion of air and gas coming from my digestive system. The sudden kind, and I can't excuse myself beforehand. It rushes across the dinner table, and my friends, used to the disruption, politely ignore the fast flow of air. I don't even say "excuse me" anymore and pretend it didn't come from me.
And my bladder is communicating with my body better. It's calmer, as if it's been in therapy, a transformed Kraken. The amount of liquid leaving and moving through my body, including sweat, is in proportion to my intake. This does not bother my southern woman status. Many of us make frequent trips to the restroom and are proud of our leakage. It's a badge because of childbearing.
We leak for our families.
The results are in! Sjogrens almost conquered.
Without all of that gas, I just might attend a tea party with the best of the hat-wearing ladies. Big brims with huge flowers, pink suits. That'll be me soon.
Maybe there's hope for me of becoming a genteel southern woman after all, only if I pretend to leak even if I don't, whilst sipping that cup of tea from an heirloom teacup with a sunburned tongue.
One Month Update
The Kraken was taking a nap.
My tongue feels like the Sahara sand with water running over it. Water that won’t absorb with no place to go. Almost as if I took it out to dry on a dishtowel and forgot to put it back it.
My stomach has a hole in it, I’m sure. It aches. It hurts. And I’m nauseous. Now I’m on medication to fix the medication that I took. It makes my joints hurt, and now I’m immobile.
So now, I don’t care what my neighbor is doing. She receives no texts from me. The squirrel has to scamper without being watched.
I’m just here, curled into a ball. On the couch, unable to get up.
The Kraken woke up and brought friends.
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