Living Breathless, My Sjӧgren's Story
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I am my own worst enemy

Insidious: (adjective) proceeding in a gradual, subtle way, but with harmful effects. (Oxford Dictionary)

I never really understood what that word truly meant until recently.

Unbeknownst to me, my body has been attacking itself. My immune system, always so efficient at dispatching illness, decided my own body was the enemy. It started, I think, with my eyes. I’ve had dry eyes for as long as I can remember, and have been lectured by my optometrists eleventy billion times for abusing my contacts.  Someone would threaten to take them away and I would cry, “No! I promise I’ll be good! Just don’t take them away!” Turns out, contact abuse wasn’t the sole problem.

Then, last spring I got this little, annoying dry cough, that popped up here and there. I’m plagued with seasonal allergies like everyone else in the greater-Cincinnati area, so I started popping Claritin and it went away. Then, one day in September, I woke up and couldn’t breathe very well or stop coughing.

Still, I ignored it for a few days because I’m young and healthy, right? I’m invincible and I’ll just throw off whatever virus is trying to bring me down. I was coming up on mid-terms and my best friend’s wedding and absolutely did not have time to be sick. My mantra became, “I won’t let the microbe beat me!” I kept repeating that for about 14 hours at King’s Island’s Halloween Haunt and  on the dance floor at the wedding, between puffs on an inhaler.

Now, a wiser person than me would stop to say, “Why in the world did you spend 14 hours at an amusement park riding roller coasters and having the bejesus scared out of you if you felt like death and couldn’t breathe?”

I say, why not? I looked at it this way: It’s tradition for my friends and I to pretend like we are not grown-up adults and go to the park from open to close for the Halloween festivities.  Would I regret more skipping the events and resting, or having fun all day and resting the next day?

Answer: I would regret more missing scary creepers, chili cheese fries and pumpkin spice funnel cakes. So I shouted “I won’t let the microbe beat me!” and got on the Beast, which then proceeded to beat me black and blue.

In a way, I did win. The microbe didn’t beat me, because it wasn’t a microbe. But it was a hollow victory because the enemy the entire time was me.

Two trips to the local clinic, three courses of steroids, and a Z-pak later, I was getting worse, not better. Any kind of exertion left me completely out of breath and coughing so hard I sounded like I was literally about to cough up a lung. My ribs ached, my back hurt and I was pulling muscles in my abdomen and back I didn’t even know I had. Breathing brought a sensation akin to a coarse grit sandpaper scraping my lungs.

If I’m honest, I knew something was up and it wasn’t the pneumonia that I was diagnosed with.  Pneumonia doesn’t make you so out of breath after walking up the stairs that you get dizzy and see stars. But I’m stubborn. And I’m young and invincible, right? I just needed some rest, which I would get after midterms and my friend’s wedding.

Well, I got through midterms (failing two-thirds of my classes) and the wedding weekend festivities, and then crashed and burned. When I finally dragged myself back to the clinic, my oxygen levels were 81 (they’re supposed to be 100, so 81 is pretty not good), and that was after two ineffective breathing treatments.  The nurse practitioner read me the riot act for not going to the ER.

“You need to go to the emergency room,” she said, scanning my medical history. “I think when you were in here before I told you to go there if you had breathing trouble again?”

Busted. She did tell me that but who wants to sit in an ER waiting room with all the sick people?

“Well, I just figured I needed some rest and a few more steroids?” I asked, between puffs of Albuterol.

She looked up from the computer screen.

“You’ve had two courses of steroids and this is the third time you’ve been here. I can’t give you more steroids. You need to go to the ER.”

She walked out to give someone a flu shot and stuck her head back in, “And don’t drive yourself. Have someone take you.”

Seven or eight hours later I was officially admitted to the hospital. I was diagnosed with pneumonia (again), started on IV antibiotics and received breathing treatments every few hours. Three days later, I was no better. That’s when Papa Stone stepped in.

Now, I wouldn’t call Dad “laid back,” exactly, but he’s not as short-tempered as I am, most days. I guess watching his baby girl languish in a hospital bed for days was more than he could take. (I suppose I wasn’t languishing, more like doing school work when I could get a wifi connection. But to him, I probably looked like I was languishing.)

“I’ve had pneumonia before, twice,” he said, right index finger jabbing left palm. “And it doesn’t take this long to go away.” Dad wanted a specialist called in.

So the doctor overseeing my care called a pulmonologist, just to appease my father. I know this because I still see that doctor and he told me that’s how he was approached for the consult. He also said that he took one look and knew it wasn’t pneumonia.

Thus started the portion of my inpatient stay that felt like an episode of “House,” just without the rude doctor yelling, “Everybody lies!” and trying to pressure me into risky treatments. Now when the doctor came in, he said I was the talk of the place because no one could figure out why an otherwise healthy 29 year old woke up one morning and couldn’t breathe.

Another specialist was called in, this time a rheumatologist. And finally, after five days in the hospital and 700 vials of blood taken, we had an answer.

I have Sjogren’s Syndrome.

What’s that, you ask? Good question. Depending on which website you are on, this is either the second, third or fourth most common autoimmune disorder, behind Lupus. It means that my immune system is a little confused and thinks my body is some kind of germ that needs to be fought off.

Sjogren’s — pronounced show-grins — most commonly attacks tear ducts and saliva glands, creating its trademark dry eyes and mouth. Check and double check, I have them both. In some cases it can attack your lungs and/or kidneys. My kidneys seem to be safe, however, my lungs are a little worse for the wear.

My initial concern was only if the condition is life-threatening. It isn’t, as long as its managed. In my case, a flare could bring another attack on my lungs and lead to more damage, more difficulty breathing, yadda, yadda, yadda.

The treatment is relatively simple: steroids temporarily and medicine to suppress my over-achieving immune system permanently. A pill or two a day keeps the eight-day inpatient stay away. But one thing I hadn’t counted on is oxygen therapy for the rest of my life.

Because the damage to my lungs was so extensive, I have a fair amount of scar tissue on the lower portion of my lungs. This means I get short of breath easily and I don’t absorb enough oxygen when I breathe.

So when I get frustrated with not being able to do something simple, like take my dog for a walk, I have to remember the innate stubbornness that kept me going while my body was trying to kill itself.

I won’t let it beat me.

This entry was posted in: Living Breathless, My Sjӧgren's Story


I’m something you don’t see every day: A person under 80 who walks around with oxygen everywhere she goes. I have Sjogren's Syndrome, an autoimmune disorder which, with the help of my stubborn refusal to go to the doctor, caused some pretty deep damage to my lungs. My lack of breath slowed me down for a while, but I'm back to adventuring - just with Gus, my little oxygen tank, in tow. This year's goal is to complete the 52 Hike Challenge and get myself into a healthier state of being. Join me on my quest to become oxygen free!

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