Important New Sjogren's Website

I was excited to receive this letter from my friend and fellow member of the Sjogren's club, Dr. Sarah Schafer. In it, she announced the launch of her very important website: Sjogrensadvocate.com which focuses on information that reflects the newest research regarding appropriate diagnosis and care of Sjogrens patients. As a physician and Sjogrens patient, Sarah has a unique and valuable perspective on our disease. Future patients are already benefiting from her current presentations to educate medical students about our disease; and now with the launch and continued development of her website this invaluable information will be available globally.

Well done, Dr. Schafer.

Dear friends and health care providers,


I’m finally ready to launch the first part of my website, Sjogrensadvocate.com

I focused on Diagnosis as the first section to publish.  Based on feedback in online discussion groups,  it seems to be a high priority topic. Many patients are understandably confused about the conflicting information they get about diagnosis.   Starting off with this topic also provides a good introduction to why Sjogren’s tends to be neglected by the medical system.   

As you will see in the index (the red link in the footer), there are many pages under the topic of diagnosis.  One highlight is a step-by-step guide for PCPs.  I know from my presentations that most PCPs are unfamiliar with Sjogren’s basics.  Few are aware of common early presentations or how it is diagnosed.

I suggest starting  with the first 2 blog posts and the ABOUT link in the header.  The ABOUT section describes the unique focus of this website.   It is important to know that this is not a “living with Sjogren’s”  tips or lifestyle website and blog.  It focuses on what is needed for timely diagnosis and good care. (Bolding mine -- Julia)

It is important for me to back up statements that  I make, especially in areas that still remain controversial among some rheumatologists.  I am comfortable that my information is up-to-date and compatible with recent research, the SSF and Sjogren’s experts.    I include multiple citations, and plan to give more background /context on misperceptions, controversies and unexplored aspects of Sjogren’s in future sections.    

I have some details to iron out, such as making sure the format is compatible on mobile devices.  Tech help is coming soon, but in the meantime, the site seems to mostly work on iphones and androids.  If you have trouble, try using a desktop.  And please let me know about any glitches, so I can work on them.

I hope you find this to be a useful guide,


Sarah Schafer

Holiday Worthy

Did everyone have a yummy and happy Thanksgiving? We did, I'm glad to report. I hope y'all did too.

I was wondering how this house would function as holiday party central, and it performed like the champ it is. Especially the six foot island -- it held all the Thanksgiving goodies with room to spare.

Once again, the Turkey Trophy game was a fierce competition. It was close, but the winner edged out the competition by one turkey egg. Bowling with bouncy ball turkey eggs requires skill and finesse and is HARD. Just sayin'. I stink as a turkey egg bowler.

Marcus was sad that he was too little to bowl, but said that next year he'd be in the thick of things. I love that sweet t-shirt turkey on his pudgy little belly.

Tell Grandma EVERYTHING.

The next day when the weather cleared, everyone decided to go work off all that pie by hiking around our place.

Love the Simba pose 

Surviving big holidays with Sjogren's Syndrome requires planning, pacing, and scheduled down time, doesn't it? Today I'm resting up big time. And trying to forget that there is a whole pumpkin pie hanging out in my refrigerator.....

Tell me all about your holiday!

Well.......it makes sense now.....

I've been cruising along for quite awhile. I've been feeling upbeat and optimistic about managing my energy, maintaining my weight loss, and almost had myself talked into believing that I had wrangled my disease into some kind of submission.

Silly Julia.

I also have noticed, with some uneasiness, the absence of my Bratty Inner Child Julia. For awhile. For quite some time.....

Ssshhhhhhh, Julia. Just pretend that she doesn't exist.....

Silly, silly Julia.

But everything came crashing down around my ears over the last week as I was eagerly looking forward to a visit from my friend Karen. My asthma kicked into high gear, my fatigue descended like a ton of bricks, and my Lupus rash exploded. Of course. What horrible timing! Karen and I have such fun when we get together and I had all sorts of projects and ruckus-inducing plans.

Grrrr.

Instead, I had spots and splotches that burn and itch like crazy, I was sucking on my inhalers, and having a hard time orienting my body any other way but horizontal.

Ooooohhhhhhhh.......scratch scratch scratch scratch..............

I made the call to Karen with regret. And a major dose of crankiness. It was so hard to ask her to postpone her visit but Karen is one of those precious friends that really and truly GETS IT. She told me to behave myself and go back to bed. I just love that girl.

I have never been able to predict a flare, but in all honesty, I really should have seen this major crash and burn coming from a mile away. I have had so many changes in my life over the past six months; all of them good, but even good things bring a measure of stress when they arrive at your door. And we all know what stress does to our bodies -- especially autoimmune disease riddled bodies. I was in a big old flare, so I immediately implemented phase one of my flare plan of action.

Which meant that I denied it all. Notice I didn't say that this was an effective plan.

Flares can't be ignored for long, as even I had to admit while living completely in Never Mind Land. So I called Dr. Young Guy and emailed several pictures to him as well.

This is a photo of just a few of the beasties. They really seem to like my arms.

Ewwwwwwwww. I took a photo of my back covered in the darned things too but I'll spare y'all that horror.

He increased the dose of my Cellcept from 750 mg/day to 2,000 mg/day. In divided doses, of course. Then he prescribed a burst and taper dose of prednisone for me. I have not taken prednisone for many years, having spent a great deal of time and effort weaning myself off of the stuff after having been on it for an entire decade, so I was hesitant to start on it again even for a short amount of time. So I sat on that prescription for a couple of days hoping that the huge increase in my immunosuppressant would be enough to get me and my crabby skin moving in the right direction.

By day two, I was still scratching myself silly and was almost completely bedridden from fatigue, so I caved, had the prescription filled, and this morning took the first dose.

And guess what? Within a few hours I recalled vividly just WHY I wanted to be weaned off prednisone. There's loads of reasons: the nervous useless energy, the carb cravings, the need to write extensive lists of useless projects, but the main one?

Here's why: BICJ loves prednisone.  She's fueled by it. It ignites her. It pulls out all of those restraining stops that I have tried so desperately to create to keep her in her little quiet corner.

So yes, BICJ was unleashed this morning. And pardon my language here, but she is a ROYAL PAIN IN THE ASS. Yes, she is. I made this realization after having leaped -- yes, leaped -- out of bed and then threw jeans and a sweatshirt on and found myself in the kitchen dragging out baking supplies with my apron dangling around my neck. I heard myself instruct Alexa to blast classic rock as I fired up my KitchenAid. Before I knew it I had whipped up a chocolate cake and had two loads of laundry done. I was trembling with pred shakes, was dripping with sweat, yet felt completely unable to sit still.

And all along BICJ was cackling with glee.

By the time the cake was out of the oven, I had regained enough control of the situation to try to reason with her.

Bread!! Let's make homemade bread next!!

Nope. Calm down here, girl. Why don't we put an old movie on and lie down for awhile...

Are you kidding me?! We're just getting started! There's so much to do! Thanksgiving will be here soon and we need to plan the menu and think about decorations and..

Menu? That's easy. We've been doing this for so many years. Turkey. Stuffing. Mashed potatoes. Gravy. Pie. Boom. Done.  

Leaves!! It's a beautiful afternoon and we should be raking leaves! Just look at 'em! Bags and bags and bags of 'em.

 *stands up and heads for the door*

*heads back to recliner while wiping perspiration from face* You sit down right now, young lady. We're plunking ourselves right back into this chair.

*rolls eyes and sticks out tongue. begins to jiggle legs restlessly and twiddle thumbs* I'm going to call up Terese and tell her to......to.......to......um.......come get me so we can go do something really BAD! Yeah! So there!

You see what I'm up against here, people? I'm determined to corral BICJ before she causes me to gain twenty pounds and/or runs my energy down to non existent levels.

In the meantime, wish me luck with this nasty flare. It's a whopper.