Is Your Jug Full? Welcome to ‘Diary of a Sjogie’

Rena Newman avatar

by Rena Newman |

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Raynaud's, creative art therapy, wooden tooth, Diary of a Sjogie

“Beep, beep, beep, beep!”

The alarm crescendoed. It was 5:30 a.m., sometime in 2017. “Time to make the doughnuts!” I thought.

After getting ready for work (on my own), I effortlessly marched out the front door.

Later, while driving home after an extended shift, I decided to stop at the local supermarket to get some bread to go with our chicken Parmesan dinner, my husband Joe’s favorite dish.

I headed home and started some chores before cooking dinner. I was beat, but I wanted to grab the hubby a fresh towel and some clothes for after his shower. His love language is certainly acts of service.

The cats meowed incessantly to let me know how famished they were. I fed them, but it was total anarchy, probably because they were sick of their food again. I noticed Kukla’s impressive murder mittens when shredded remnants rained down from the kitty condo. I was only able to cut the claws of three pawsies.

My cat Kuklana stares intently. (Photo by Joseph Arthur)

This was an example of a typical day for me for much of the last decade. When I turned 42, suddenly things radically changed. Who would have thought I’d be diagnosed with not one, not two, but three rare diseases in a nine-month span?

Hello, Sjögren’s syndrome. Howdy, Raynaud’s phenomenon. What’s up, autoimmune autonomic ganglionopathy?

These days, I get up a few hours later than before and move at a sloth’s pace. My husband is my caretaker now. The couch and I are pretty tight, but the cats are sick of me being home and always seem to be hiding.

The highlight of my days consists of going for a car ride (I sometimes pretend we’re randomly heading out on an everglade escapade rather than to Home Depot), multiple doctors’ appointments, or taking a walk down the street. I can’t go far, though.

“Look out! Sjogie with a walker heading your way. Oh, please don’t come by me to talk. My mouth is a desert, my tongue is full of cactuses, and I’m too fatigued to converse! No, this is not due to COVID-19.”

All right, now for my point: Adapting to my new life is — gulp — a big deal. I’m picturing Will Ferrell playing Ron Burgundy, declaring, “I’m kind of a big deal.”

I once printed that meme for someone I worked with, which prompted a weird look rather than a chuckle. I quickly realized it would be a good idea to get someone to help me control my emotional whirlwinds and process the shock of becoming this new, bizarre, warped version of myself due to my chronic illness.

Whose puffed up, purply, aged hands are these anyway?

I concluded that I wasn’t going to figure all of this out by myself, as much as I wanted to believe I could. And chances were I wasn’t going to allow myself much-needed healthy releases on my own.

Regarding therapy, can I vent without guilt, without holding back, and without being judged? Yes. Does it help with isolation, especially during the pandemic? Yep. Does it fix the problem? No, but I have access to the best listener and cheerleader.

Plus, I’m able to improve my confidence. I’m also reminded of things when my head gets fuzzy, for example, when I need to advocate for myself.

A wise person once asked me, “Is your jug full?” That’s an excellent question. It can fill up almost to the point of overflow, but good thing I empty it often.

A picture of prosperity. (Photo by Joseph Arthur)

I hope you enjoyed this prelude to my new column, “Diary of Sjogie.” Check back every Monday for more Sjogie-Aspie stories.

“Just because you accept help from someone doesn’t mean you have failed. It just means you’re not in it alone.” – “Life As We Know It”

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If you have Sjögren’s syndrome, when were you diagnosed? Can you relate to feeling like a new version of yourself? What type of emotional support do you have, if any? Please share your thoughts in the comments below, or at the Sjögren’s Syndrome News Facebook page.

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Note: Sjögren’s Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sjögren’s Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Sjögren’s syndrome.

Comments

Joe Pierce avatar

Joe Pierce

Please add a comment!

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Alberta Kucharski avatar

Alberta Kucharski

I've been recently diagnosed with Primary Sjogren's Syndrome. My rheumatologist has given me no information on how to live with or handle this illness. Everything I've learned about it has come from the internet.I live in the Atlanta, GA area and have had no luck finding a Sjogren's specialist. Is there a list of specialists by area? I'm struggling and need to find out all I can to help me live with this illness.

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Marie avatar

Marie

Alberta - sorry to hear that you are struggling with this disease also - it sucks ! I know it can be difficult to find a good dr who is knowledgeable about Sjögren’s and all it entails. I’m not sure if you’ve checked out the website www.smartpatients.com but I found that site doing a search for people who were dealing with the same issues. They have a forum of Sjogrens patients who share what I feel is valuable information on the disease. They also help you feel not so alone and have a list by state of drs that other Sjogrens patients have had some success with. So it might be a resource worth checking out. Hope you find some answers ! Take care !

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Siobain Duckworth avatar

Siobain Duckworth

Rene I love your diary and just wanted to say thank you. I live in England and was diagnosed three years ago with Sjogrens. I have learned to accept what you cannot change, life goes on and you only get one shot at it. I am very grateful to Sjogren's News and the fascinating updates that arrive in my in-box, it can all get a bit technical for a lay-woman who has just turned 70, but it is reassuring to know there are people working hard out there on our behalf.
I wake up every morning and despite feeling like a dehydrated sponge, I am so thankful to be alive.

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Sandi Price avatar

Sandi Price

I find that I was treated very aggressively for RA but when it comes to Sjorens everyone in medical community seems to just want to give us sugarless gum !!! I find myself becoming short of breath and am now seeing a pulmonologist to address this new issue. This disease is more than just dry eyes and dry mouth !!!

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