The immense joy of finding another like you

I know that there are millions of people that suffer with Sjogren’s and millions more with other autoimmune diseases or any invisible chronic disease.  Over the years I’ve found places where people share their experiences and ask questions.  A great one for Sjogren’s is SjogrensWorld.org.

I was scrolling through some posts this morning while munching on my granola bar and clicked on a post about flares (when their disease flares up and symptoms intensify).  The person was asking about how long flares typically last for people.

I clicked on it because I’m pretty sure I’ve never not been in a flare.  Ever since this really went into full swing of constant symptoms rather than the odd “huh, that’s weird” I’ve been constantly struggling with intrusive symptoms.  It’s been at least 3.5 years since that point (at least 7 years since they started happening – but 3.5 since they’ve been constant).  I was curious about how others describe their flare and non-flare times since I don’t seem to experience that.

I got to the last response posted to the question and a woman was talking about her history with flares and she wrote:

“Sometimes during a flare, I’ll get central nervous system involvement such as problems writing and typing…my hands don’t follow the instructions they’re getting from my brain…”

The second I read that I sort of jumped up and down in my office chair in my cubicle and waved my hands around because I was so excited.  I finally found someone else that describes it the exact same way as me!  I’ve talked about what I call my “fine motor skill issues” many times and how the doctors have either ignored it, written it off or told me I was normal based on all my lab and test results.

Everywhere I read that describes nervous system implications for Sjogren’s talks about peripheral neuropathy which usually presents itself as numbness and tingling.  My doctor was “stuck” on that description for a while and I don’t know if I ever did successfully communicate to him what it was I was describing (granted, he was the only one out of the three rheumatologists that at least acknowledged I was describing a problem with motor control – the other 2 simply ignored it and moved on – so at least he had that going for him!)  EMG/NCS is the tool used to diagnosis this – and mine was normal.

And if something does talk about central nervous system involvement in Sjogrens it talk about interference with functions such as urination, vision, etc.  They also say that MRI is how that would be diagnosed.  My 2 brain MRI’s and 1 cervical MRI were all normal.

I have never once in all my research on Sjogrens (and trust me, I’ve read just about everything out there!) heard someone describe it the same way I do – I usually say that “my hands just don’t work right…they don’t do what my brain tells them to do…I have to think about things that should be automatic like picking something up.”

Years into this journey, I finally found someone that expressed what I find to be my scariest symptom (after all, I can envision working with fatigue, pain and dryness even if they are excruciating a whole lot easier than I can envision just about anything with the loss of the ability to control/use my hands) exactly the same way I do.

It lets me know that I’m not crazy, I’m not imagining this, I’m not communicating it in a poor way, I’m saying what I feel – that my hands don’t work right – they don’t do what my brain tells them – it’s difficult to write, type, grasp, pinch, hold – that I have to actively spend some of my working memory (that’s my PhD in education with emphasis on studying how we learn, how working memory is used during tasks, etc., coming out right there!) to do things that should be automatic.

Many people have expressed how reading my blog (and my new book!) gives them this feeling – that there’s someone out there going through it, too.  It’s a validating feeling.  I’m so unbelievably grateful that I can provide that for people, in whatever small way.  And I’ve felt it by reading other people’s writings as well.

But this one was different.  This one provoked a physical “Jumping for joy” response that I had no idea would have come out until that moment.  Maybe it’s because it’s the symptom that most concerns me looking towards my future with this disease.  Maybe it’s because it’s the one symptom I’ve experienced that I haven’t read about many, many other people describing in the same way.

There is glorious joy in finding someone that expresses their pain, symptoms and struggle in exactly the same way as you!

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