A New Diagnostic Test for Sero-Negative Sjoggies?

Immundot image found here. 

It's a story that I've heard over and over from frustrated readers: "I have all of the symptoms on Sjogren's syndrome, but the doctor told me that my blood doesn't have the anti-SSA/SSB antibodies. I wish that I knew what was making me feel so sick."

For these patients, an invasive and uncomfortable lip biopsy could be next in the diagnostic process, which may or may NOT prove the presence of Sjogren's syndrome.

It appears that another test may be available in the future which would offer patients and their health care teams another clue to their illness' identity. Thanks to the Sjogrens Soc. Canada's tweet that alerted me to this recently published study, found here:

Anti-SSA Ro52/Ro60 antibodies testing by immunodot could help the diagnosis of Sjogren's syndrome in the absence of anti-SSA/SSB antibodies by ELISA.
Mekinian A, Nicaise-Roland P, Chollet-Martin S, Fain O, Crestani B.
Rheumatology (Oxford). 2013 Sep 11. [Epub ahead of print]
Abstract
Objective. The objective of this study was to assess the diagnostic value of anti-Ro52/60 antibodies by immunodot in patients with suspected SS..........Conclusion. In patients with dry eye/mouth syndrome without anti-SSA/SSB antibodies by ELISA, the detection of anti-Ro52/Ro60 antibodies by dot could help in the diagnosis of SS.

It will be interesting to see if this type of diagnostic test will be made available on a large scale any time soon. Let's keep our eyes peeled.

I Prefer Pie

Guys. I was all set to write an informative post today all about the merits of different types of post cataract intraocular lenses.

Didn't happen.

Instead, I made a pie from honeycrisp apples grown right in our back yard. Then John and I watched old pirate movies in a nod to my continued nightime use of my eyepatch.

Aye, it be hArrrrrrrrd to focus on serious stuff, me mates.

I must confess that I watched the movie with a slight sympathy toward the pirates.

Venus Williams: Sjogren's AND Strong

Thanks to Tricia, who sent me the link to this story about Sjoggie Venus Williams:

Post Sjogren's, Venus Williams Is Proving To Be More Than Inspirational
By Chris Oddo
Published in Tennis Now

"It has been over three years since Venus Williams last went deep in a Grand Slam, but if this week's hot streak in Tokyo is any indication, next year could be the year for her.....Written off by many after being diagnosed with the energy-sapping autoimmune deficiency known as Sjogren's Syndrome in 2011, Venus Williams has never relented in her quest to return to her championship form, motivated by an “I can do this even if you don't think I can” ethos that has often times left her vulnerable to disappointment and defeat...."
Story continues here.

Watch this YouTube video of one of Venus' killer shots:



Williams battled Petra Kvitova in the semis and although she lost, in my opinion, is still a winner in every sense of the word.

Sign me up for number two!

Boy, howdy.

My surgery went smooth as silk.

I'm left with a little sensation of scratchiness in my eye and some light sensitivity, lots of eye dropping four times a day (so what else is new, just different eye drops than before), and playing pirate with my eye patch at night.

Lulu loves my eye shield. She actually carried it off this morning after I set it on my bedside table.

She promised she won't do it again. 

Naughty woogie. Good thing it's made of metal so that I could give it a good washing with antiseptic.

The vision in my eye is amazingly better -- but the sensation of having one eye with vision corrected and the other still fuzzy and blurry is seriously strange. Sometimes my new eyeball's clarity is better than other times. I wonder why? I'm on the lookout for symptoms of development of a film on the new lens which I'm told appears fairly frequently and is easily rectified with an outpatient laser appointment. Time will tell.

I can't wait to get my other eye done. Patience, Julia......

I thought this video was a pretty good demonstration of cataract surgery.

Down By the Riverside

Couldn't resist posting this picture -- using John's iPhone, wow, great quality -- of my son in law out salmon fishing.

This was taken near where Greg and Terese live, lucky ducks.

Eye am Fine

Thanks for all the prayers and good wishes, everyone! The surgery was incredibly fast and all went as planned. I'm hanging out doing the eye drop thing like a good patient. My friend Naomi is going to chauffeur me to my post op appointment later today.

I'm thinking that I'm going to be really glad that those dratted cataracts are gone but in the meantime, I'm trying to figure out how to SEE. Ooooo. The colors, man......wild, man......

I'm also thinking that I shouldn't blog while still under the effects of an IV sedative.

See y'all tomorrow.

Cataracts Away!

Today should be interesting. At about noon, I'll be in surgery for my much-anticipated cataract surgery.

Woo hoo!

Seriously. I am SO ready to have this procedure that I just can't stand myself. The cataract in my right eye has become much worse over this summer. I hate the feeling that my eyes don't match since the cataract in the left eye is smaller.

No wonder I've been having headaches.

My daughter in law thinks that it's awesome that I get to wear an eye patch briefly, so she insists that I wear one of these pirate temporary tattoos in pre-op. I just might do that.

Aaaaaaarrrrrrr ye mateys! Hm. Now which one do I like best........?

I Need a New Plan

I hope my maple trees are as colorful this year as they were last fall. 

I've only just begun to get my head around the fact that it's September already. And now we're looking at October.

If I hadn't had my weirdo experience with neutropenia after my last cycle of Rituxan in April, I would be due for my next set of infusions right about now. But that's just not going to happen this year. The risk of an overwhelming infection after one of those types of side effects is just not worth it.

Drat.  I have to begin to resign myself to a life without what I thought was my magic bullet. Grumble.

I know. I know. It's not a good thing for me to constantly look back at those post infusion days when I had a marvelous boost of energy that lasted four wonderful months. Last year after my fall dose, I cruised through the holidays enjoying every moment.

 So just get over it, Julia. Move on, already. It is what it is.

Sigh. Easier said than done. So I'm on a mission to find my new normal as my favorite time of the year approaches: a "normal" that will have to include more rest, less holiday activities, but just as much happiness as ever.

Isn't that the way this disease goes, though? It seems that the one constant about living with autoimmune disease is that there IS NO CONSTANT.

I've Raised a Baker

Yesterday was pretty entertaining. Daughter #2 baked the layers for a friend's wedding cake.

Mmmmm.

The girl knows her way around Whole Foods. 

It will be a three - tier cake, made with organic ingredients, and from scratch. One tier of chocolate/buttermilk filled with dark chocolate ganache; one of lemon filled with tangy lemon curd; and one that she calls a whipped cream white cake filled with an Italian meringue buttercream.

Here D#2 models my favorite apron made for me by my friend Kathy still going strong 33 years later. (The apron AND Kathy...)

Lucky for us, she had leftover batter that we baked up as cupcakes. Delightful. We will freeze the layers to keep them until Friday when the decorating begins in earnest. I wish I could be there to watch this beauty of a pastry take shape, but since my cataract surgery will be on Tuesday afternoon, I think I'd better stay home and watch the festivities in Seattle via Skype. Which is a pretty good substitute maneuver but one can't lick the frosting bowl that way..... Dang.

Saturday Smile: A Capella Science

First of all, I'd like to make it clear that I understand almost nothing of quantum physics, the string theory, and thus this video; I have heard some of these terms but would never pretend to comprehend this stuff. Thank you, thank you Paul for sharing it!!

Favorite lyrics:
Space is a pure void. Why should it be stringy?

And the Einstein sock puppet is pretty awesome, I might add.

THIS is why I have hope for homo sapiens. A new generation that's brilliant, musical, AND has a sense of humor. What more could we ask for? I think our future selves are in good hands.

Sure.....I meant to do that....

Last night after dinner, John suggested that we take a drive down to a nearby river to see if the fall salmon run had begun. What a beautiful evening. I had forgotten to grab Canon, so took pictures from my phone. Because it's just not in my nature to simply soak in all that nature and beauty.

I simply MUST take pictures.

Yeah. It's so pretty down by the river at sunset.

Funny how it's pretty even while I'm careening head over heels over the rocks by the river.

I was mid-shot as I just......fell. I'm fine. But as I sat in the dirt and river rocks, I checked my phone to make sure it survived and was amazed to see this picture.

How cool is that?!

It was almost worth the trip.

How Not to Play Fetch

I'm trying really hard to publish more serious posts, really, I am. But having Son and Daughter-In-Law's woogie Frodo here for the week makes it difficult for me to think of anything except doggie stuff.

I'm not complaining. Just explaining.

Over the course of this dog-sitting experience, I have been observing the interactions between a relatively "normal" dog i.e., Frodo, and.......Lulu. What kind of interactions? Um. They kind of defy definition.

Watch this. Sorry about the bizarre editing and camera work. I'm working on it..

SSF Clinical Practice Guidelines

The cover story for the latest Sjogren's Quarterly publication entitled SSF Clinical Practice Guidelines for Management of Sjogren's is a very interesting read. It was written by Frederick B Vivino MD, who chairs the SSF Clinical Practice Guidelines committee, is Chief of the Division of Rheumatology Penn Presbyterian Medical Center, and Director of the PENN Sjogren's Syndrome Center.

Dr. Vivino begins his discussion with this:

"In response to patient concerns about medical care and physician inquiries regarding therapeutic dilemmas, the Sjogren's Syndrome Foundation launched an initiative several years ago to develop Clinical Practice Guidelines for the disease. Working groups were formed to concentrate on three major areas including Rheumatologic/systemic manifestations, Ocular and Oral problems. (Bolding mine.) These guidelines are now well underway and recommendations for initial clinical questions are being drafted. "This initiative marks one of the biggest undertakings that the Foundation has ever made! Recognizing the critical need for Clinical Practice Guidelines to improve care for Sjogren's patients and provide consistent, evidence- and/or expert-based guidance to healthcare providers, the SSF Board of Directorss was determined to make this initiative a Foundation priority," says Steven Taylor, SSF CEO."

He goes on to explain that the project is a team effort:

"While specialist in rheumatology, opthalmology, optometry, and oral medicine form the majority of volunteers, representatives from other backgrounds and specialties are involved in specific topics and in the consensus process. These include patients, nurses, neurologists, neuropsychologists, psychiatrists, and oncologists."

Each of the three working groups for each major area of study developed major topics to be addressed.

The Rheumatology/Systemic Manifestations working group chose three topics:

• The effectiveness and use of biologics to treat sicca symptoms
• The use of DMARDs for inflammatory musculoskeletal pain
• Management of fatigue

The Oral Manifestations group topics include:

• Caries Prevention
• Caries Management and Restoration
• Mucosal Management and Symptom Relief

Ocular Management Clinical Topics include:

• Evaluation of Dry Eye Disease
• General Management
• Therapeutic Treatment

Dr. Vivino ends his article with this comment:

"As this article goes to press, the first set of recommendations is undergoing the Consensus Panel process. As recommendations are developed, Guidelines members plan to report on final recommendations at professional meetings, publish in journals representing their respective specialties, and, in the end, compile all recommendations into one publication. Gaps in scientific knowledge will be identified as areas of future study so that unproven treatments and methods of management can be further assessed. Guidelines members recognize that recommendations are a work in progress and will need continual updating as new studies are published. In the future, the Clinical Practice Guidelines committee also hopes to engage colleagues in Europe and Asia for further guidelines development with a more global perspective."

While I realize that the final version of these vitally important clinical practice guidelines are years away from completion, still I feel hopeful simply because they are in process. I appreciate systemic symptoms and fatigue receiving significant examination and focus. I also am impressed that the members of this committee are volunteering their efforts and time toward this gigantic project.

I can envision the day when Sjogren's syndrome patients, rheumatologists, and other health care providers have this valuable tool available for their use.

True Confessions Julia Edition

I suppose I should also confess that I can't recall where I found this cartoon, and so I can't give anyone credit where credit is due. You'll note that this didn't deter me from plopping it front and center on this post. 

Bless me, readers, for I have sinned. Well.....maybe not sinned exactly.... but it has occurred to me that I have not been completely forthcoming about a few things. With not only y'all but also various other folks. So after mulling these incidents over for a bit, I have decided that it's time, people. Time for yet another edition of TRUE CONFESSIONS, Julia style. Are you ready for this?

Too bad. I'm unloading my conscience anyway.

First confession:

I post pictures to Reasonably Well extravagantly, prolifically,  incessantly, and.... a lot. And I just happily soak it all in whenever anyone compliments them. Yes, yes.......aww, gee, shucks......weren't nuthin.....

But, truth be told, lately those pictures frequently are taken not by me (yes, still with my Canon) but by folks that happen to be nearby when I decide a picture should be taken.

Here! Take this and get that picture!

The two most frequent recipients of the Julia-Camera-Shove maneuver are John and Greg. And with this admission, I admit that I need to share the kudos. Especially for the shots that were taken on our recent roadtrip over the North Cascades: those were mostly taken by Eagle Eye Greg.

So if y'all wouldn't mind, could anyone that has ever complimented me on my photos go back and revise their comments?

What? You think that since I made the mistake that I should fix it and that y'all have lives which don't include time for searching and editing comments?

I suppose you're right.

Second confession:

While I'm on the subject of cameras, and my Canon in particular, and of sending minions off to do my photography work; I'd like to confess that I specifically asked Godson to take this photo. Because the angle from a four year old's perspective into someone's nostrils is just too good of a photo op to miss.

Whoa. Seriously not nice of me. Quite possibly evil, actually. (Notice that I didn't say I was sorry about this.) Yes. I actually put Canon into the hands of a child and told him, "Go take a picture of that nice man's nose." And hastily added, "Don't wake him up!"

Godson handles Canon like a PRO, I might add. Just ask him what the three rules to Auntie Julia's camera are. He'll tell you. I let another of my nephews run around getting pictures once and Godson told him solemnly: "ONE! Don't touch this part! (points to but doesn't touch lens). TWO! You have to wear the camera strap around your neck. THREE! You have to give Auntie Julia her camera back whenever she asks you."

Excellently said, Godson.

Third and final confession for this session, which was prompted by this question from the astute Gill:

Was this pain anywhere near where you store your, eeerrr, mobile phone while in, eeerrrr, church services. Did you mention to Dr YG the habit of storing items in bras that bras were not designed to hold?

Awhile back, I was whining about my latest aches and pains one of which was in my rib cage area, much better now thanks, and Gill wondered if I had been completely truthful in the discussion regarding causative circumstances of said pain.

My confession? No. No, Gill, I have never 'fessed up to my alternative cell phone storage system to Dr. Young Guy. And don't YOU tell him, either.

Ahhh. I feel much better now. My countenance has lifted. I feel pure. And stainless. And... What? Really? You think I have to actually atone for my misbehaviors? And y'all think you should get to choose my penance?

Be kind, people.

Three Good Things

We had a nice weekend. Son and Daughter-in-law came down for a visit. Aside from the usual good things that happen when my kids visit, we enjoyed a few extras:

1. We saw this amazingly perfect spiderweb:

2. They took away some of my old furniture which means it's time to look for a new couch and loveseat....sigh. If I must shop for new furniture, I must. See what a dedicated wife and home decor person I am? AND THEN GET JOHN to move it around a BAZILLION TIMES! Excellent....

3. AND they left this. Woo hoo!

But he only gets to stay for a week. Dang.

Sunday Smile

I love this cat!

Watch This. Read This.

Thanks to Sarah for passing along a link to this remarkable article entitled Disabilities Can Teach Us How to Live:

"... Joshua Prager helps us address the priorities in life that we take for granted until they are gone forever."

Read the article here.

This is the incredible TED talk that inspired the article:

Thank You!

I so appreciate the prayers and supportive thoughts for my young friend that underwent surgery for a very large and invasive brain tumor yesterday.

He survived the surgery, which was a major feat due to the tumor's size, location, and shape.

So the war rages on; but this battle's victor is Tim.

Yesssss!

I'm a Mixed Bag of Owies....

In need of a bag of your own? You can get one here. 

.....or, more accurately, I should say I'm a mixed up old bag with all sorts of owies.....

I saw Dr. Young Guy today and rattled off a zillion complaints: my knee hurts (old news), my feet hurt (old news), my hip hurts (old news), my weirdo blotchy rash is back (old news), I'm tired as heck (extraordinarily old news), I can't SEE because my cataracts are getting worse (not quite so old news), and the newest wah-wah-wah: the left side of my chest wall hurts.

It's so strange. Whenever I cough, take a deep breath, move my arm a certain way, lay on my left side, or wear my underwire bra, my ribs right along my bra line hurt like crazy. After a thorough exam, here's what Dr. Young Guy said:

"I don't know what this is."

Well, gee doc. That's helps a lot. I responded. Here's how cranky I was: I appeared at my appointment without treats. Gasp! It's true. I told Dr. YG that nobody, but nobody -- even my dog -- gets treats when I'm feeling this owie. He told me that he'd do his best to earn his goodies. And then he said,

"Well, if it helps, I know what it ISN'T."

Yes, actually that would help.

He went on to explain why after listening to my lungs and doing an exam, he felt that this pain wasn't cardiac or lung related, those being the most serious potential causes. Which left a few other possibilities: a strained muscle, costochondritis (an inflammation of the cartilage between the ribs and sternum, or a mild inflammation of the lining between the chest wall and the lungs (pleurisy); none of which were treated with anything but continuing my prednisone, more non-steroidal anti inflammatory drugs (NSAIDS), patience, and time.

Blech.

I was instructed to contact him immediately if the pain became worse, if I developed a rash along the painful area, if I developed a cough, or if I became short of breath. And, being the perfect patient that I am...snicker....I promised I would.

We also talked about some upcoming fixes to this old bag. My cataract surgery is coming up, after which my podiatrist will schedule my foot surgery for bunion and hammer-toe.

Hey. After all that, I'll be a new woman! New eyeballs! New tootsies! Hmmm. Wonder else what I can have replaced this fall?

A Request

Today, a friend is having surgery for a brain tumor.

He and his family need all the prayers and positive thoughts that we can send his way.

Thanks.

Sjogren's Syndrome and Rheumatoid Arthritis Study: Double Trouble

Do you have both Sjogren's syndrome and rheumatoid arthritis? This recently published study found here may be of interest to you. SS: Sjogren's syndrome, RA: Rheumatoid arthritis.

Characteristics of Sjögren's Syndrome in Rheumatoid Arthritis

Jing He, Yan Ding, Min Feng, Jianping Guo, Xiaolin Sun, Jing Zhao, Di Yu, Zhanguo Li
Rheumatology. 2013;52(6):1084-1089. 

Abstract:
Objective. To compare features of SS in RA with primary SS and RA without SS.

Methods. Patients hospitalized between January 2007 and December 2010 were retrospectively studied. Seventy-four cases of overlap RA and SS (RA/SS) among 509 cases of RA were identified. Cases of SS (n = 187) detected during the same period acted as controls.

Results. Among those with RA/SS, there were 46 cases of RA-onset SS and 12 cases of SS-onset RA. Sixteen patients had simultaneous-onset RA and SS. Compared with RA without SS, RA/SS patients had more severe arthritis; a higher incidence of haematological abnormality, fever and rash; and a higher frequency of RF, ANAs and anti-SSA and anti-SSB antibodies (P < 0.05). Compared with primary SS, RA/SS patients were older, had more severe arthritis, anaemia and lung involvement; a lower incidence of fever, rash, leucopenia, thrombocytopenia and hyperthyroidism; and a higher frequency of RF, anti-keratin antibody, anti-perinuclear factor and anti-cyclic citrullinated antibodies (P < 0.05). Compared with RA and primary SS, RA/SS patients had higher disease activity scores of both RA and SS.

Conclusion. RA/SS patients have distinctive features, with more complications and systemic involvement. In addition, disease activity is higher in RA/SS.

What do YOU choose?

This week -- September 9th - 15th 2013 -- is Invisible Illness Awareness Week hosted by blogger Lisa Copen. This year's theme is, "I Choose To......"

There's a zillion great reasons to participate! One lucky photo submission will win a Kindle Fire. Read more about this event here.

Genetic Association with Primary Sjogren's Syndrome and Chronic Fatigue?

The concept of this study is intriguing:

A possible genetic association with chronic fatigue in primary Sjögren's syndrome: a candidate gene study.

Norheim KB, et al.
Journal Rheumatol Int. 2013 Sep 3. [Epub ahead of print]

Abstract:

Fatigue is prevalent and disabling in primary Sjögren's syndrome (pSS).......This candidate gene study in pSS did reveal a trend for associations between genetic variation in candidate genes and fatigue. The results will need to be replicated. More research on genetic associations with fatigue is warranted, and future trials should include larger cohorts and multicentre collaborations with sharing of genetic material to increase the statistical power. Continue reading here.

Interesting. Examining fatigue at a genetic level. I especially appreciate the opening statement of this abstract.

Go get 'em, guys. Research rocks.

Float that Knee

This one was my favorite. That's Puget Sound right outside the window. 

About midway through our last vacation, I realized that my normally cranky right knee was feeling much improved. I thought about that one evening as I was floating around all by myself in a lovely hotel pool.

Hm.

It occurred to me that since every hotel that we had stayed in had a pool, and that I had found myself bobbing and floating in each one of them, that maybe.....

Gee. Could the gazillion articles written about the benefits of water exercise on arthritic joints be RIGHT? As the week continued and so did my bobbing, my knee continued to be relatively un-cranky.

I really need to get back to the community center pool. It won't have the same wonderful serene ambience as my quiet hotel pools (think blaring music and kids shrieking) but the opportunity to bob this old body around will be the same.

I Promise..

...that tomorrow's post will be un-silly and won't include pictures of rocks.

In the meantime, I'm catching up on some Zzzzs. See you then.

One of our hotels had these beauties available to the guests. Terese and I snagged a couple and went for a very short ride. Terese took off like a smarty-pants but let's just say that my bike-riding form was less than graceful. Or speedy. No wonder I need to rest up now that we're home.  

It's Been a Great Road Trip

....ah, but all good things must come to an end. Here's the last batch of my pictures from our trek across Washington State on the North Cascades Highway.

If you ever get the chance to go -- do it. But keep in mind that it is a seasonal road meaning that once the snow flies, it's closed; and that it takes you into very remote territory. That's the best part.

It was so beautiful, I almost didn't want to leave. But I'll be back.

Meet My New Friends.....

Buzz and Roscoe. Aren't they beauties?

They promised they would send me a card at Christmas.

Here's a close-up of Roscoe. He said this was his most photogenic side.

Hey, Annette.....

In answer to your comment, "Amazing how you manage to blog on vacation." -- Girl. If blogging from the road was difficult, I would not be doing it. Seriously.

I usually travel with my laptop, camera, and (if I'm not too dopey) my camera/computer transfer cable. We try to choose hotels that have wifi, so that's how it all happens. When all else fails, Blogger has a mobile app that allows me to post limited stuff from my smart phone.

But I'm sure that y'all have noticed that my vacation posts are rarely Sjogren's related, and frequently silly. It's easy to just upload a bunch of pictures taken from inside the car as we zip along, which is exactly what today's post is comprised of. Um. Except for Charlie the cat. And the bloody mary picture. There's a reason Terese wanted me to take that picture, but I'm not ready to talk about it. At least not until this furry mouth and headache thing go away...... tsk....

See you tomorrow.

Yes. Yes, they do. 

She's One in a Million

Birthday pie. With lots and lots and lots and lots of candles. 

Happy birthday today to Terese: my partner in crime, my pie-lovin' pal, the REAL American (music) Idol, the Head of Hoopla, an incredibly patient travel companion, the occasional lemon drop martini connoisseur, an expert logger, wielder of a wicked paint brush, the tri-state riding lawn mower champion, master of Holstein cow wardrobing, brilliant kitty cat wrangler.....but most of all and unbelievably.....my friend of seventeen years.

Here's to many, many more years of shenanigans.

Cheers.

This is Fun

Mine. It's all mine. 

John and I love to just get into the car and cruise.

Does this mean we're getting old? It's something my parents and grandparents used to do.

For whatever reason, as the years go by we enjoy it more and more: choosing an impromptu route, calling for a hotel reservation here or there, and just......driving and yakking. This go-around we yoinked Greg and Terese and took them with us.

Last night we checked into a hotel in a beautiful small town in eastern Idaho. After a delightful breakfast of Idaho potato pancakes (of course), this morning I spent a whole hour in the lovely hotel pool all by myself. I floated and talked to myself and alternated between sitting in the hot tub and drifting around the cool pool while John sat in a lounge chair sipping coffee.

Ahhhh. It's good.

On the Road Again.....Alert the Authorities......