Staying Positive as a Foggy-headed Warrior

Rena Newman avatar

by Rena Newman |

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embarrassing moments, sugar, dry, brain fog, Raynaud's, creative art therapy, wooden tooth, Diary of a Sjogie

“Welcome back to the Sjögie Show. I’m your host, Rena Newman.”

Oops, sorry. I was daydreaming.

Hello, friends. Have you seen the Wonder Woman meme? You know, the one that says, “I am Wonder Woman. I wonder where I left my keys. I wonder where I put my purse …” Well, that’s me! And today’s topic is … ding-ding. You guessed it: brain fog.

What is this haze?

I confess, I’ve looked for my cellphone while I was on it more than once. Also, my mind can go blank and cause me to stop talking mid-sentence during a conversation. It truly amazes me that I can both hyperfocus and be a complete space cadet queen. (Earth to Sjög-renie.)

For a while, I thought this head haze was a result of bleaching my hair, or was perhaps related to all the medications I take. I also believed it was due to — what? Oh yeah, attention deficit disorder?

“Head Haze Holiday.” (Courtesy of Derrian Childress)

Clouding of consciousness

It turns out that Sjögren’s brain fog exists. High-five!

My question now is, can this brain haze actually cause someone (I won’t name any names) to get inside a stranger’s car, sit down in it while talking, and then realize it’s the wrong car? Ahem. Yes, that really happened.

Maybe the fog has intensified, since I’m also fighting repetitive thoughts due to obsessive-compulsive disorder.

This Sjögie-Aspie life comes with never-ending fun.

What’s funny is I’m dealing with some thick mental fog right now and am having a hard time finishing this column. Where are my glasses and house shoes? I “wonder.” I need a glamorous eyeglass chain. There may be an Amazon shopping trip in my near future.

Staying positive

Living with this autoimmune disease is frustrating. It would be easy to allow negative thoughts to invade my mind, but I enjoy a challenge. Every day I try to focus on the good and remind myself to use positive self-talk.

I’d like to end this segment with a chant. If you have Sjögren’s and are foggy-headed, say this with me:

It’s only the fog, it’s not me.
My illness does not define me.
Others do not define me.
I am a warrior. 

Until next time. Remember to stay strong, laugh, yell, or cry if you need to, and never lose hope.

***

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

Stephanie Brimm avatar

Stephanie Brimm

Keep up the good work! I enjoy your column. I work with the public and sometimes stop talking cold because I forgot a word. I have actually described it to a customer and gotten the word from them. Ugghhhh Makes me feel very inadequate sometimes.

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Donna McLaughlin avatar

Donna McLaughlin

Thanks so much for your column. I have those same Brain fog moments. Glad someone else has gotten into someone else's vehicle and wondering why I didn't lock my door or why the seat felt odd. That's me.
I'm working from home at this point and fretting about having to go back in office because I get so distracted so easily. I think my boss thinks I'm just that noicey. Really I am not but if I can't help but hear your conversation, I will be distracted by it and lose track of where I was on my work. It is a struggle.

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Siobain Duckworth avatar

Siobain Duckworth

Refreshing to read thanks Rena. I have just celebrated 70 going on 50 and really thought my "brain fog" was turning into something worse. The loss of words for the right thing comes on so quickly. When the fog descends, I just pause mid conversation, smile at the strange looks, and wait for the missing word to pop into my daft old head, it usually does.

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Mellaine avatar

Mellaine

I enjoy the conversation I’ve got a question is sojgrens like multiple sclerosis?thank u

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Holly Parsons avatar

Holly Parsons

Thanks so much for your frankness. I’m a magazine editor and once a pretty sharp study. You nailed the rest of it and it’s helpful to understand and be super kind to myself! Take good care!! 🌷

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Darlene Fassnacht avatar

Darlene Fassnacht

I loved your post. Your humor about Brain Fog
about a serious issue was up lifting. . Thank joy.

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Karen avatar

Karen

Love your article and your positive attitude!!! The most embarrassing thing for me is, for longg moments, not being able to remember someone’s name (even people I have known for years!🙄)! 🙃

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JMichele avatar

JMichele

I enjoy the humor. Iam after 10 years being ravished by this faulty immune system. It has a brain of its own.
My teeth and crowns are crumbling, my eyes are scarred with corneal abrasions. The sunlight burns my vampire photophobic vision..
The dryness causing xerostomia and dysphagia, relentless!
For years now I have been trying to get medically necessary dental procedure no one seems to be able to help me
Do you have any idea of how a Sjögren’s patients qualifies, and how to go about it.?

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Peter avatar

Peter

Thanks for finishing this column, Rena. I recently learned I am an aspie. What you shared helps me see how brain fog and aspie are different. For 33 years I’ve known I have Sjogren’s, but I only found out about my Asperger’s last month. I’m also trans gender.. Thank you for sharing!

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Sharee avatar

Sharee

Oh my goodness! Thank you so much for this story. I do things like that all the time and did not realize it was related to my Sjogrens. I knew about brain fog but didn't connect. I love your column.

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Marianne avatar

Marianne

What a validation for my loose brain connections!
Thanks so much for putting into words what my husband cannot comprehend.

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Marianne avatar

Marianne

What a feeling of freedom to read validation for my brain disconnect!
My husband tends to sigh a lot which is directly intended to snap me out of my plight of forgetfulness!
Thanks for the poem

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Felicita Alvarado avatar

Felicita Alvarado

Thank you so much for sharing. My daughter used to snap her fingers at me and say "FOCUS MOM FOCUS". "FINISH THE SENTENCE" I always thought to myself ,"When did I stop talking in mid sentence?" I am also a polio survivor, by the grace of God it was a mild case. It affected my left leg.
I so appreciate your post.

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Peg Weir avatar

Peg Weir

This is another great column. I share many of the brain fog issues that you described. Brain fog and trying to talk make it tough. I get totally, lost at times. So frustrating! Tomorrow will be better.
Hugs,
Peg

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Colette Rinehart avatar

Colette Rinehart

Love reading your column! Keep up the positive attitude and sense of humor.

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Arlene avatar

Arlene

This was the first post that I read on the website and I am so relieved my forgetfulness and failure to remember words is only Sjogren’s. I also have had chronic fatigue syndrome for 38 years and thought that that was the cause of my forgetfulness I even had a neurologist test me for early onset Alzheimer’s. Since very few doctors are even aware of the syndrome he told me it was just normal aging which made me feel even more frustrated. I have experienced gum painheadaches and severe weight loss over the past 18 months. I get easily fatigued which is also caused by my chronic fatigue syndrome (Epstein Barr) but my B12 injections help overcome that. I finally found a rheumatologist who did Bloodwork on me and diagnosed my Sjogrens. So glad I read this posting since she never associated my symptoms with it.

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Jul Smith avatar

Jul Smith

Is this like dementia or will this turn into alzheimers?
Will the brain fog get worse over time?
Can I do anything to stop it?

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Pauline Weppler avatar

Pauline Weppler

I feel that Sjogren’s is like having the symptoms of long Covid but thankfully not having had Covid, ie
aching joints, breathlessness, brain fog, low mood, chronic tiredness , peripheral neuropathy and so on.
The answer ...pace yourself, be positive and remain upbeat and thankful for what you can still accomplish.
But is comforting to know that brain fog is a common problem....Thank you.

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Jane Mary Webster avatar

Jane Mary Webster

I have Sjögren's. I also have brain fog which I am aware is caused by my having rheumatoid arthritis. I was taking a remedy manufactured by Brainzyme - Focus Original. It contains, among other items, herbal substances. For that reason my GP could not approve it. An ideal solution is Clear Brain but that contains Gingko Biloba which if taken in conjunction with Methotrexate (which I'm taking for the RA) can cause a stroke. I have had to stop taking Brainzyme Focus Original because I have recently started to take Aripiprazole which must not be taken in conjunction with herbal substances. It's a no win situation so I have decided to stick with the brain fog! I just need to write copious notes and reminders to myself. Happy days! Well, you have to laugh or you would surely cry!

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Terri Carter avatar

Terri Carter

Thank you for putting some humor into my day! It was much needed... I was recently diagnosed with Sjogren's, Celiac Disease and have had Raynaud's for several years. It's nice to know that others understand and the humor you have about it makes it easier. Thanks again for what you do!!!!

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Rena Newman avatar

Rena Newman

Terri, thank you. I'm glad you are enjoying my column. <3

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Jennifer Allen avatar

Jennifer Allen

I am so glad you wrote this column. I thought I was loosing my mind or getting dementia at age 59. I also have another rare disorder (Mal de Debarquement syndrome) which also has brain fog implications so some days I am a space cadet!
Frustrating because I have always prided myself on good language and communication skills and now I sound like a ditzy chick. Which I guess makes for some good laughs...

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Jasminka Petko avatar

Jasminka Petko

Thank You for Your column. I also live with brain fog and sometimes I can't remmember even my doctor's name. I also mix some words. After so many years with this illness and beeing a cancer surrviver I'm trying to live with smile and a positive thinking. We are alive and we are here and that counts😘❤️

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Nancy Beja avatar

Nancy Beja

DAH! DAH! You nailed it. Thanks.

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Stacy avatar

Stacy

I am not alone :) Well done, thank you!

Reply
Venus Vassar avatar

Venus Vassar

I really thought I was loosing it. The brain fog and the fatigue are almost debilitating
I am 66 and clean houses for a living. Is there anything I can do to create more energy to go on???? More so what shouldn't I be doing??

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Ellen McPherson avatar

Ellen McPherson

Rena, I love your articles. They are so informative and upbeat - your sense of humor gives me hope and courage to face each day with joy. I particularly love reading all the wonderful comments from fellow sufferers - I don't feel so alone, and I have learned so much from the people who respond to your articles. I have gleaned more information about these diseases from your reader comments than I could ever get from the medical professionals.

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Rena Newman avatar

Rena Newman

Ellen, thank you for your kind words. And yes, we have an awesome group here <3

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Nelda Bowen avatar

Nelda Bowen

I was just diagnosed at the beginning of this year, at72 I was assuming my brain fog was just part of aging even though it had gotten worse very quickly. So very happy that I happened upon your site. Thank you for helping me realize I’m not the only one.

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Ann Rogers avatar

Ann Rogers

Was glad to find this site after finally having been diagnosed with Sjogrens. Appears pilocarpine is all that is available for the dry mouth and I can't take that because of my current high blood pressure so there's not much available to help. The no-sugar mouth lozenges are my best friends now! After having "good teeth" most of my life, my mouth feels like it is under siege. I have also noticed the brain fog and was thinking the worst....so glad I found this site and know I'm not alone....

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