Sunday, September 13, 2009

My Brain is Being Held Hostage by Sjogren's


I seem to always have a flare of my Sjogren's symptoms as each season changes. Wish I knew why.

At any rate, the leaves are turning, and my fall flare is here. For me, in spite of the increased fatigue and joint pain, the fact that my brain turns off is one of the most frustrating symptoms of a flare. How does that switch get flipped??

John and I were listening to a conversation yesterday. We were discussing the subject a few hours later, and I listened in slack-jawed disbelief as John filled me in on details that completely escaped my attention.

Hello? 911? I'd like to file a missing organ report. Yessir. My brain has been kidnapped.

I remember the first time that I experienced brain fog while at a choir rehearsal with Terese. I have been able to read music for 40 years, but on that night, I looked at my music and realized with horror that nothing made sense. Even though the episode only lasted a few seconds, it left me feeling terribly frightened.

Several years, many discussions with my doctor, and a zillion more episodes of "Julia's Missing Brain" have gone by. I have looked at the dashboard without a clue how to put my car in drive, have wondered how to brush my teeth when the batteries of my power toothbrush died, (up, down, up, down, silly girl), I've given up balancing the checkbook when I'm in a flare, and have wandered around countless parking lots looking for my car. I've lead a whole row of people into the wrong pew at church because I couldn't remember where we all started, have stared stupidly at my cell phone wondering what our home phone number was, and remember being thankful at the ease of simply sliding a plastic card through a machine rather than actually counting out dollars and change when making a purchase.

Luckily, over the years I have also realized that a foggy brain does eventually work. If I can put aside some of the paralyzing angst and simply remember to breathe and be patient, the mental wheels begin to slowly turn again.

I need to keep reminding myself of this during the challenges of this flare.

You can read more about brain fog in this article on the Sjogren's World website:
"Brain fog is often experienced as problems with memory or difficulty focusing or problems with processing information or numbers or with paying attention. It is an experience of feeling not quite ‘all there’ mentally. While some people may feel they are becoming demented or developing Alzheimer’s disease, this generally is not the case, in that this is a different type of ‘dementia’ that is not likely to land a person in a nursing home for chronic care. In fact, brain fog is a relatively common condition that can be brought on by a variety of factors."

3 comments:

Anonymous said...

Life has dealt you a pretty sh....y hand, you know? I don't know why you just don't scream and hit the wall, or your husband, or your dogs....(hands off of your friends, however.)

Julia said...

How do you know that I don't? I may have a secret padded room hidden away somewhere where I can just let 'er rip.........

Jenny Pettit said...

I'm so glad I stumbled on this post. In the past I only had rare and brief 'brain fog' episodes, but in the past month or so I've had the biggest, most pervasive ones ever...I was actually starting to feel crazy until I was reminded about brain fog in these conditions (yep, in my brain fog I forgot about brain fog itself). Can I just ask more about how you noticed your fogs develop? I know you mentioned the first time with trying to read music, but did you notice them set in after a number of years or alongside other symptoms? I'm about to start a new job and am afraid this fog will be here forever.

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