Looking Through the Sjogren's Lens

General Blog
1


So I thought I would take this particular blog post from my personal blog - She's Come Undun - and share it on the Sjogren's Syndrome Support page. For those of you who are not familiar with my style of writing, I need to tell you right now that it often has a snarky flair, but you need to know that my own personal method of dealing with challenges is to use humor to offset them.

And another thing: I use my own style of punctuation. . . I absolutely love ellipsis and italics. . .and sometimes throw in big erudite-sounding words or those which just sound humorous to me.

And - for the record - my favorite word of all time is akimbo.

So here we go. . .

______________

My thoughts today are about my own personal struggle when it comes to assessing my health problems.

Now, before the cascade of Sjogren's symptoms hit me this past Spring, I was the consummate-doctor-avoider. I hadn't had a mamo or gynecological check-up in ten years. . . had never dared to submit to the horrors of a colonoscopy even though my father contracted colon cancer at age 54 . . . and switched dentists every two years because I always was ashamed that I hadn't followed up with the last one. I suffered from fear of the doctor in a BIG way and my anxiety regarding doctor's offices totally outweighed my innate sense of responsibility. The only responsible thing I did was to visit my primary care physician (when they refused to refill prescriptions) to get my hypertension, cholesterol, and Xanax scripts renewed - the last of which I couldn't even dream of entering a doctor's office without. . .

The other responsible thing I did way back in 2010 was ask my primary to run an ANA on me because my daughters all struggled with rheumatological and autoimmune issues. Of course it was positive. I then visited a rheumatologist who did a full lupus panel and found the Sjogren's antibody. But because I didn't feel I had the symptoms (and the nurse who insisted on weighing me was the neighbor of the most busy-bodied woman I knew and I could just image her whispering my over weight over the back fence. . . ) well, I never returned and didn't get treatment.

Until it hit.

And hit with a vengeance after I had the flu this past Spring.

So in the past four months I have seen more "ologists" than I ever envisioned seeing in an entire lifetime. And - after a visit to the ER this past weekend which the old me would have put off until the symptoms went away or killed me - I'm wondering how this new me. . . this Sjogren's me. . . can find a happy medium.

If I get a headache now, the new me tends to think. . . this d**#*d disease has given me a headache!, when the old me would have taken a couple of advil and not given it much thought. The Sjogren's me experiences a fever and assumes it's yet-another complication, but perhaps it's not!

And perhaps (pardon my french here) diarrhea is just crappy no matter when - and how - you get it. . . .

Am I making the mistake of viewing my entire life through this new Sjogren's lens? Have I gone to some kind of extreme and can't see the forest through the trees?

How do others handle this distinction?

How do you know which doctor to consult? When a symptom is urgent? When it's nothing to worry about?

And how do you know which lens to look through?

Just a "newbie" wondering here. . .

2

I like your style of writing. I too am a writer (blog and now am having my first book published) although I feel nervous calling myself that. I write words, edit them and put them on my blog or in my book.....and people read them. almost 80,000 visitors to my blog thus far. And I feel like a farce. Just like sometimes I don't believe I have SS--even though my teeth are rotting, I had peripheral neuropathy and glaucoma...all from this lovely disease. (Lose my vision?? you are KIDDING me, right?) I don't FEEL anything other than the pain of RA and PsA...how much of it is SS? Can it really be divided like a pain pie? Or is it simply one big steam roller that we cannot run fast enough to avoid. One disease destroys my cartilage, one my joints themselves and one the synovial fluid. So we are just FUBAR from every angle possible. I try not to look at my life through a lense that says "Patient" on it. I do not want to measure my life on a pain scale. I do not wish to label an event as grueling, when it was really just supposed to be fun. I do not wish to have to check my doctor filled schedule when I get an invitation to a party. I do not wish to have my friends stop inviting me --even though they know I won't- can't attend. I'm still a person after all...and it would be really nice, all you friends of mine, if sometimes you would think of me and drop me an email or make a phone call..

So yeah I know what you mean about the Sjogrens lense. It makes us look at and define our lives in very different ways than we used to when we were "normal" And while we may struggle against that--and that struggle may be the very thing that saves us---we in reality cannot avoid this lense...because it's our new glasses. And without proper glasses we cannot see clearly to pick the splinters from our fingers or read the directions on a cake mix. I like chocolate cake BTW....so if you wanna bake me one...German Chocolate. Yep My fave.

3

Would love to look at your blog if you give me the link. Much easier for me than baking a cake for you . . .and the fact that you’re able to publish a book despite all your pain and challenges makes you my hero! Thanks for your insights.

4

Liz and Cynthia, I certainly can relate! Well done!

5

Well done indeed ! :wink:

6

my blog is at : www.cynthialottvogel.blogspot.com

7

I find it hard not to look at my life thru the pain lens. To a very large extent, it dictates what I will and will not do. My best friends are sister pain people…they understand fme. The image of a pain pie is humorous. In my mind, all my pain parts are smashing together. It’s hard to separate them out for the doc. I usually only think of doing that before an appointment. It’s been a part of my life for so long that I automatically know which symptom needs what kind of care. Thanks for the post

8

Love this! I think it's easy to feel that way and think everything is associated with Sjogren's - or any other disease for that matter. I had the fly vaccine in October; it was the third one I'd had in a row. But guess what? This year I had an allergic reaction and got stuck with an EPI pen. We confirmed the allergy when an allergist tested me a month later. Everyone was surprised. well, I had been pretty good up until that point. But two weeks later until present, new, weird, painful symptoms reared their ugly heads. I do feel like some of those symptoms are calming down with the help of Plaquenil, supplements, acupuncture and a super clean diet. Did your symptoms calm down eventually?

9

This is really nice writing .