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Posts from the ‘Sjogren’s Syndrome’ Category

Four Angels and a Cigar – Part 1 of 4


{After I read this blog yesterday: Finding Your Voice, I was inspired to publish this series of posts that I had started writing last year.}

No this is not a joke post, although you may find a few things funny on the way to the cigar.

And so here we go…

Let’s start with a little background: Read more

One Cha-Cha Step at a Time


This is the year…

The year I take myself back.

Not to anywhere or to anything.

I take back me…control of my life.

Control of who I am. Read more

I Almost Forgot I Was Sick…


STOP!

If you’re looking for a funny post, this isn’t it.  Nor is it a home decor post, or a cute kid saying post, or a religious post, or an art post.

What this is, is a health post.  Not a whiny, woe is me post, but rather an epiphany post.

Late last week I picked up a prescription at one of our local pharmacies, and as I watched them through the drive-through window, my heart leapt and I thought…I could work there…I could do that!

And then came the epiphany…No, sadly, I couldn’t.

Not because I couldn’t learn what to do, nor because I lack the customer service experience.  But because my health wouldn’t allow it.  {ok, I whimpered a little here…ok, in all honesty I said “damn”.}

In the past year, my Sjogren’s Syndrome has gone from being a somewhat silent illness (under control with the right medicine…as long as I didn’t overdo it), to my daily foe.  15 years ago I was known as ‘The Energizer Bunny’ – able to multi-task with the best of them; juggle job, motherhood, work, community plays, you name it – I had energy for it.  13 years ago, I couldn’t seem to find any energy, I hurt everywhere and became depressed…I’d just had Gabi.  It took 2 years for doctors to figure out it was Sjogren’s Syndrome causing the problems.  Medication helped tremendously until last Fall, when my body fell apart.  Now don’t get me wrong – I’m better than I was a year ago – the shoulder has been fixed, the lower back/sciatic is lots better – it’s the regular Sjogren’s stuff that’s still running on high.

There are millions of people who have Sjogren’s – in fact approximately 4 million in the US.  And there are millions more with RA, Fibromyalgia, MS, Lupus, and many other auto-immune diseases.  These are the group of chronic illnesses described as ‘Invisible Illnesses’.  Why?  Because you don’t see a limp…or an open wound…or a cast.  You can’t see it…period.  On any given day ‘we look good’…in other words, we can’t be very sick…right!?!  Wrong.

Auto-Immune Disease is described as ‘when your body’s cells attack themselves’.  No need for an infection to get you sick…your system does it for you.  Infections just make it that much more fun (jk) – they just throw your disease into high gear.

It can be like having the achy flu EVERY DAY…or being so tired that you can hardly keep your eyes open, even when you’ve had a good night’s sleep…or your joint pain may flare up – with or without exercise…or your eyes and mouth are so dry that you need medicines, surgeries, or dental work to help…or you may get hit with Brain Fog and it leaves you wondering if you are getting Alzheimer’s because you’d swear your child never told you the fact she insists she did – even though your spouse saw it.  There’s no cure, but there is medication to help (thank God).

There are so many more symptoms that all these diseases bring with them…and so many levels within each illness.  Some people are better than others.  Some unable to work…while others can.

We need to all remember this – there’s no “ONE SIZE FITS ALL” auto-immune disease level…so PLEASE don’t judge others.  A – you don’t know what health issues they have…and B – you never know what someone else is going through in their lives.

I think I can speak for most people who have auto-immune diseases when I say the following:  If you don’t understand what I’m talking about above, we pray you never do…because sometimes the only way to understand what someone is going through, is to go through it yourself…and we hope you never have to.

And if you do understand, thanks for the moral support…know that I’m here for you if you need an ear, or a gentle hug…and best of all…I believe you.  Let’s keep smiling…whether you dress up or have a sloppy day…do whatever makes you happy – and don’t forget to look for the BLESSINGS and HUMOR in everything!

As for the job thing…I’ll keep watching these two funny, little, daycare babies…we can hang out and color, or work on our alphabet, or rock-a-bye.  And sometimes we (they) run, chase Motzy, or march around the couch playing cymbals while we listen to John Philip Sousa on the stereo.  They’re pretty flexible with how I’m feeling…and thankfully, so are their parents.  These two little girls bring great joy to me – I hope your life is just as blessed!

Have a great weekend!

Patty O

The Adventure Called My Life


I was just sharing a comment and advice for a fellow Sjogren-ite and I remembered one of my best…or worst brain fog moments.  There’s brain fog and then there’s brain damage.  Sometimes I swear I can hear Bill Cosby saying…”Brain Damage!!!”  In fact, I’ve used that comment for each of my girls at one moment in their teenage-dom.

As I’ve gotten a little older, I’ve experienced the normal…can’t remember names, addresses, phone numbers…or the mixing your children’s names up, spewing every other name and the dog’s name before you get to the correct one:  “Sam, Alex, Motzy…GABI!”

But now there’s the moments of not being able to get the words out correctly.  It’s the speaking of words like:  clockwork and saying wock-clork.  Hrmph.  At least with a blog I can catch them before it goes into print.

– You know the saying ‘If you can’t laugh at yourself, who can you laugh at’?  –

I laugh…a lot.

And so does my family.

And I’m so happy I can provide such good entertainment…

The best moment of all with outright – tears running down the cheeks, side-splitting, I can’t breathe anymore, belly laughter came months ago when we were going to watch a movie.  I yelled (not whispered mind you) into the kitchen – “Let’s have POPCORN”!  Or at least I meant to yell that.

What came out was “Let’s have COP PORN!!!”

Huh…

{insert head thunk}

There wasn’t a dry eye in the house.

Yes, this is my adventure.

Welcome to it!

🙂

Patty O

ps.  Have I written about this already?  Hrmph…darn memory!

Do What You Can Do…


This picture and its saying are fantastic – a little sassy, but fantastic!

To all my fellow auto-immune disease sufferers – I say:  Let’s raise a glass of water and toast ourselves – and to those who don’t understand and don’t want to try to understand – to heck with you!

We may take longer to do some things (work, rest, work again)…we may be more tired and achy… Read more

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