Saturday, February 12, 2011

A Conversation Between Julia and Sjogren's Syndrome

Image found here.

One of the great blog post subject suggestions made this month by the WEGO site was this: To write an imaginary letter to your disease, or to imagine a conversation with your disease. Here's my version:

The talk show director clapped his hands for attention.

"Alright, everyone. Choose a seat! Settle down, please! Thanks for being here for another episode of Meet Your Diagnosis! brought to you today by the Never-Empty-Water-Bottle company, and the QWIKEE Bathroom Locator app now available for all smart phones. I'd just like to clarify the audience rules, so listen up.

As you know, our host Julia can be um....a bit temperamental. You may recall the disastrous results last week when one of our audience members brought in a box of TastyKakes, so if anyone has any kind of baked goods - this includes brownies and cookies, people - please keep them completely out of sight and DO NOT CRACKLE THE PLASTIC WRAPPERS. If you choose to ignore this request and draw her attention it is in your best interests to simply surrender the pastry. The producers of Meet Your Diagnosis will not accept any responsibility for injuries incurred if these instructions are ignored and our host vaults over any audience members in pursuit of your dessert item.

OK. Let's see...what else....oh, yes. Please observe the APPLAUSE sign when lit, and let's have quiet now as we go live in" the director silently pointed to the brightly lit talk-show set.

The plush curtains parted to reveal a smiling Julia. "Welcome everyone to this week's edition of MEET YOUR DIAGNOSIS!"

The audience dutifully cheered and whistled. Julia squinted as she hopefully scanned the audience members, then appeared slightly disappointed as she took her seat behind her desk on the colorfully decorated set. She took a sip from the water bottle placed prominently in front of her.

"Well, now. Our last episode was quite exciting, wasn't it?" she commented brightly. "I'd just like to update everyone that last week's audience member suffered only minor injuries - two broken legs, a concussion, and a dislocated shoulder - and is expected to make a full recovery!"

The audience clapped wildly, as prompted.

"The TastyKakes, while slightly squished, were still quite delicious!" Julia smacked her lips as she took another quick examination of the audience, who suddenly became very quiet. The front row members shrank back slightly in their seats and exchanged nervous glances.

Julia sighed and shuffled the papers on her desk. "Today's episode should be quite interesting. Let's all give our guest diagnosis Sjogren's Syndrome a welcome round of applause, shall we?" She stood up and courteously smiled as Sjogren's syndrome made it's way onto the stage, waved at the audience, and settled into the cushy guest chair.

"Comfy?" Julia asked sweetly.

"Very!" It answered confidently.

"Well, I'm glad that you are comfortable. BECAUSE YOU HAVE MADE MY LIFE A LIVING HELL!" she snarled.

The audience collectively gasped with surprise, then began hooting and applauding their approval. The floor director rolled his eyes and sighed. "Here we go again.." he whispered to the nearest clipboard-carrying assistant. "Better call catering and make sure that we have her dressing room stocked with mango margaritas. Mango. Got it?" The assistant nodded, then mumbled quietly into his walkie talkie as he scurried away.

Sjogren's syndrome sat stiffly up in it's chair. "Well, now. I wasn't prepared for a bout of attack journalism!" it sniffed in indignation.

"Really? I wasn't expecting to have my body attacked by autoimmune disease, either!" Julia snapped.

They glared at each other across the desk.

"If you're going to conduct yourself in such a undignified manner, I may as well leave!" said Sjogren's syndrome, as it began to rise from the chair.

Julia smiled smugly. "That would be wonderful."

"Wait a minute!" it exclaimed. "You can't get rid of me that easily!" It sat back down in the chair with a decisive thud.

Julia sighed. "Drat. I really was hoping that would work. Well, if you insist on hanging around, you are going to have to explain a few things."


"Because I don't know why you chose to bother me, I don't understand what you're doing to my body, and I want you to leave me alone," she said. "What do you say to THAT, buster?"

"Ah." Sjogren's syndrome settled deeper into the chair. "Those are excellent questions but I simply have no intention of answering any of them."

Julia's jaw dropped, speechless at it's audacity.

"Why should I? Your best scientists and researchers can't say why I made my appearance. Oh, sure, they talk about genetics and infections and exposure to various compounds, but to be honest, they don't have a clue. My dear woman, isn't it abundantly obvious what has happened to your body? The dryness, the fatigue, the joint and lung and skin issues?" It coughed delicately. "Perhaps you don't understand because of brain fog. A delightful manifestation, if I do say so myself."

Julia crossed her arms in front of her in a decidedly confrontational pose. She leaned forward and narrowed her eyes. "Oh, really."

"Yes, really. AND, your best scientists and researchers don't have a clue how to treat me, either. They throw drugs at me, and I really don't want to brag here," it smirked, "but pffffft. So what if they slow me down a bit? Or make some of the symptoms less severe?"

It held up it's hands as if to block Julia's next comment. "Yes, yes. You're going to say something about prednisone and DMARDs and biologics. Bah. Those puny pharmaceuticals can't stop my progression. Actually, I find it tremendously amusing when I see all the side effects that these drugs have." It chuckled.

It leaned back and smiled expansively. "Ah. I think that my favorite by far is the carbohydrate cravings that accompany prednisone. Familiar with that one, by any chance?"

Julia scowled. "No. Not in the least."

It suddenly reached under it's seat and coyly held up a white take-out box plastered with Rose's Deli stickers.

"Ooooooooooooo," the audience murmured apprehensively. Several members seated in the back row began to furtively move toward the exit.

"I couldn't care less," Julia said between gritted teeth.

"I'm so glad to hear that, darling. Because I adore Rose's Deli carrot cake, how about you? Oh, right-o. You don't have problems with carbohydrate cravings, do you? Mmmmm.....just look at all that lovely cream cheese frosting....and I think that little orange frosting carrot is so charming..." It waved the now-open box enticingly under Julia's nose. "I can't get enough of the aroma of cinnamon and nutmeg and.....GAAA!"

"Quick - cut to commercial!" shouted the floor manager into his headset.

"Wow. I didn't know the old girl was so agile!" commented the sound tech as Julia made a sudden wild leap over her desk. "Think she's been getting a little exercise lately?"

"Nah," replied the lighting supervisor. "I think she actually got a bit more air when she body-slammed last week's guest. Hey - better cue up at least three more commercials. It's a real zoo down there."

"Hahahaha! You can squash me but you can't ever be rid of me!" chortled Sjogren's syndrome from under the plush guest chair as the audience thundered toward the exits.

"I'll get you someday, I will!" shrieked Julia as she crouched on all fours, trying unsuccessfully to drag her tormentor out from his hiding place.

"Um. Julia..." the floor manager timidly spoke into his headset. " may want to change Not your most flattering profile..."

"Wha-?! Ah, geez." Julia shook her head and sat back in disgust. "I am SO done for the day!" She stood up, smoothed her hair and skirt, and attempted to compose herself as she stalked toward her dressing room. After a few steps, she whirled around to snatch the Rose's box as muffled guffaws could be heard from under the cushy chair.

She shook her fork in the direction of the snickering Sjogren's syndrome. "You think you've won? Dream on, you monster. You can hide, but I'll get you somehow. Somewhere. Sometime. Our people have not even begun this fight!" and marched off the set.

"Margaritas, people. Mango margaritas. NOW."

The staff sighed as they surveyed the trashed set. "Where did Sjogren's syndrome go?" one of them asked another as they began to sort through the rubble.

"It's lurking around somewhere, the creep," the floor director commented with resignation. He rubbed his chin reflectively. "But it won't be here forever. I'd put my money on Julia and the Sjogren's Syndrome Foundation in this fight. Sjogren's days are numbered. Definitely."


Jenny P said...

Julia, you are one of a kind! Were you a dramatic arts minor in school or something? Without your craziness this whole invisible illnesses journey would be SO boring! P.S. - I think Philly's created a TastyKake monster in you!! YES:)

Anonymous said...

I love this post Julia !! You could be a great author ! Well, in fact you are !

annie said...

Every day I come visit you on your blog, I never know what the topic of the day will be. What a hoot you are, Julia, and what an imagination!

Julia Oleinik said...

Thanks, guys. You're right Jen - I AM a total TastyKake fan. And it's all your fault.

No, never a dramatic arts minor but John would definitely say that I am a drama queen. Hehe.

Amy Junod said...

Very fun post. I have a few things I could say to my stupid Sjogrens too. My Sjogrens would probably laugh at me while I tried desperately for the words to come out of my mouth right.

michelle said...

That was hilarious!!! Thanks for the laughs, I needed them today =)
I'm a member of WEGO too!! Although, since I joined I haven't been very active due to flare after flare after flare...
Wishing you a great day ttoday!

Amy K said...

What a fabulous and creative post. You really get across the point how nasty that Sjogren's is!
While I don't suffer with the same ailment, I certainly could relate to the feelings and I got a chuckle or two as I read, which is always greatly appreciated!
Thanks for sharing.