Never Mind

Image found here. 

Last night over dinner, Terese laughingly told me that she didn't realize that her chimera poem was going to be put up as a blog post.

So, completely and totally disregard THIS, found HERE: 

Chim chimera, chim chimera
Chim chim cheree.
We’re hoping for luck, as lucky can be.
Chim chimera, chim chimera
Chim chim cheroo
Good luck to the mice and to Julia, too.

Or throw me some cheese and that’s lucky too.

Now as the cells from the species will mix
We’ll see if the process will help with a fix.
Our fingers are crossed and our knees they will bend,
our prayers for improvement we surely will send.

Chim chimera, chim chimera
Chim chim cheree.
We’re hoping for luck, as lucky can be.
Chim chimera, chim chimera
Chim chim cheroo
Good luck to the mice and to Julia, too.

Besides, I have since found out that in the pronunciation of the word chimera, the ch makes a K sound. Not CH as in choo choo. Dang. Doesn't rhyme nearly as well that way.

It was never here. You didn't see a thing....

Not a thing.

Chronically Coping

Photo mine. 

I received this letter last week:

I was diagnosed with Sjogren's in February and someone suggested that I read your blog and have loved it! I do have a question for you. I have been really struggling with the diagnosis and how it affects my family. I have 3 kids ages 8,5 & 3 that I homeschool while my husband is in school. He has had a crazy schedule this semester while my fatigue and pain have climaxed. The poor guy is so sweet about helping out around the house but I feel like I am such a burden on my him. I am sure that I am not the only one that has felt that way. So, if you did, how did you get over it? How do you adjust your thinking that your pain and fatigue is just a short term thing to a long term thing?

Isn't that a great question? And isn't that a difficult question to answer?

I replied to her email with my own situation and perspectives in mind:

You're right - we are not alone in dealing with the enormous "wrap your head around" issues that accompany a chronic and significant disease like ours. What has helped me is to keep reading and learning as much as I can about autoimmune disease, and adjusting to chronic illness. It seems that when I can understand more about what is happening in my body, I am able to verbalize that better to John and those around me, starting some little domino effect of sorts. If we all have some level of understanding of the physical changes and aspects of Sjs, especially when often we look as though there isn't one thing wrong, then my family adapts, and more importantly, I adapt too. For me, knowledge is key to adjustment. 
     I think that we all have to eventually go through the classic grieving process : denial, anger, bargaining, and acceptance in grieving the loss of our old abilities. My faith has helped me enormously through this process. 
     But the guilt......ah, the guilt. I still have a very difficult time watching John scrub floors and lug laundry around in addition to working his more than full time job. But I have a mantra: I'll do all that I can do. It seems to help. There's still days that I overdo and pay huge consequences, but we have slipped into a kind of a routine and that's helpful too. John helps me to not over-step my energy limits frequently by questioning my motives when I dive into a project or a task that will be physically challenging.

Other authors have offered a variety of resources to help deal with this life-changing disease, and they're all good:

A Body Out of Balance by Nancy Carteron and Ruth Fremes
A Delicate Balance - Living Successfully With Chronic Illness by Susan Milstrey Wells
Peripheral Neuropathy - When The Numbness, Weakness, and Pain Won't Stop by Norman Latov, MD, PhD
The Autoimmune Connection by Rita Baron-Faust and Jill P. Buyon, M.D.
The Balance Within - The Science Connecting Health and Emotions by Esther M. Sternberg, M.D.
The New Sjogren's Syndrome Handbook (Sjogren's Syndrome Foundation) by Daniel J. Wallace
The Sjogren's Syndrome Survival Guide by Terri P. Rumph Ph.D, and Katherine Morland Hammitt
You Don't Look Sick - Living Well with Invisible Chronic Illness by Joy H. Selak and Steven S. Overman, MD, MPH


I've blabbed about my adjustments to chronic illness multiple times, read this and this and this...but I KNOW that y'all have your own perspectives, which are so important to share with other sjoggies.

How would you answer this question? I'm looking forward to seeing your responses. Leave them in the comments.

Everyone Sing Along!

I was sitting at my computer yesterday, coffee cup in hand, glumly thinking ahead of a day without sugar, wondering what to write.......when I saw my gmail account light up with a new email.

It was from Terese. After reading the letter's contents, I.....I....was speechless. At her talent. At her rhyming skills. In the face of her wit at fusing pharmacological terminology with fireplace maintenance and Mary Poppins.

So without further ado, here's this morning's version of lunacy, courtesy of Terese. Grab a chimney brush, dab your brow with soot, and get ready to dance:

Chim chimera, chim chimera
Chim chim cheree.
We’re hoping for luck, as lucky can be.
Chim chimera, chim chimera
Chim chim cheroo
Good luck to the mice and to Julia, too.

Or throw me some cheese and that’s lucky too.

Now as the cells from the species will mix
We’ll see if the process will help with a fix.
Our fingers are crossed and our knees they will bend,
our prayers for improvement we surely will send.

Chim chimera, chim chimera
Chim chim cheree.
We’re hoping for luck, as lucky can be.
Chim chimera, chim chimera
Chim chim cheroo
Good luck to the mice and to Julia, too.

Befuddled by the lyrics? Read this to refresh your memory about chimeric biologic drugs; and watch this to refresh your memory of how the song REALLY goes:

It All Started With the Fondue

I woke up yesterday with a hangover. Well, it sure felt like one. And I hadn't even had ONE mango margarita. Or any other adult beverage. Dang.

Headache, furry mouth, body aches.......

I wah wah wah-ed about it to John over breakfast and he volunteered that he had noticed that I had been eating more sugar than usual lately. Could that possibly be the culprit? "I feel really lousy when I eat sugar, babe. Headache, achey, yup, I'll betcha that's your problem."

Hm. Let's see.......Weight Watcher's ice cream bars for breakfast.......for lunch......for a snack......cinnamon french toast with caramel syrup for supper......ice cream bar for bedtime snack.....

Sugar? What sugar?

French toast, yes, I admit.....but the ice cream bars are made by WEIGHT WATCHERS! How could a Weight Watcher's chocolate-covered ice cream bar be BAD for me? They're only four points plus! Each..... Hm......

Image of delectable but dangerous treat found on Mimi's Meals, here. I would have taken my own picture but mine are ALL GONE.  

He's right, of course. Sigh.

I don't know when it began, but I have slowly but surely fallen off my healthy-eating wagon. This couldn't possibly be my fault.

It must be Terese's. Or Greg's. And, as always, John's.

I think it all began on the weekend that we spent out at the coast. Greg forced me to make a fondue dinner Friday night, which ended with chocolate ganache dipped strawberries.

Greg. How COULD you?

And then after we got out to the coast, I'll admit that it WAS my idea to stop at a candy store, (Ok. In full disclosure here, I am such an honest person after all, I practically grabbed the steering wheel and strong-armed Greg to turn around and head toward the store) but they all should have known better.

And once we were there, Terese should have forcibly kept me from entering the store and loading up on two pounds of salt water taffy. And eating it. And goading everyone else to eat it too. What are best friends FOR? Really. Has she no sense of responsibility?

Huh. It's all making sense now.....I KNEW that I wasn't to blame here.

Yeah! And then....and then....and then.....um.....and then with that load of sugar chasing around inside me, who could be surprised that I was irresistibly compelled to throw aside any rational train of thought regarding food and healthy food choices, hm?

Certainly not ME.

Of course not. It had to have been John's fault that I practically crawled inside the freezer ice cream shelves at Wal-Mart and emerged with as many boxes of ice cream treats that I could hold in my frozen little hands. And then zoomed through the check-outs and zipped home so that I could pry open the nearest box and begin chowing down. He did push the shopping cart and paid for all of them.

Guys. How could you do this to me? Aren't you my closest friends and family? For shame. Tsk. How can you SLEEP at night, people?

Oh. My. Gosh. What a tragedy.

But after careful thought, I've decided not to hold this week-long sugar high against them.

Really.

No, no.....don't compliment me on my largesse here, honestly. Aw, shucks, folks. It's just my generous and forgiving nature, really......yes, yes......and I'm so modest, I know.....

After all, they are going to have to tolerate me as the sugar withdrawal begins. It's going to get ugly around here. Brace yourself.

Getting Ready

Delightful image found here. 

Before I can get my infusion of mousie-parts, aka rituximab, my doctor wants to be absolutely certain that I am not harboring any undetected germs, since this drug will make me more vulnerable to infections.

So he poked and prodded and examined and temperature-d and  auscultated me, then sent me off to have a skin test for tuberculosis. It's called a PPD, a Purified Protein Derivative (or sterilized mashed-up proteins from the bacteria that produces tuberculosis) injected into a superficial layer of the skin. It takes really good injection technique to create the perfect just-below-the-skin bubble, or wheal.

Never perfected that technique, myself. Good thing it was rarely a requirement of a dialysis nurse.

After the bubble of PPD is absorbed into the skin, those that have previously been or currently are infected with the tuberculosis bacilli will form an angry red raised area around the injection site in 48 - 72 hours.

Mine was negative, as expected, which means that I'm all ready to get going on the mouse infusion.

I'm anxious about this. Not so much about the potential side effects, which is actually what I SHOULD be worried about.

Instead, I find myself thinking a great deal about how I would react if for some reason I was unable to take this drug, or if the drug just didn't help me at all. I haven't felt this hopeful about a medication since I began this whole journey eight years ago. And I have probably set up some unrealistic expectations in my mind for it's effects, even though I know this is not a good idea. Yes, there's some good data out there about reduced fatigue and increased saliva, but I need to keep reminding myself that there hasn't been one single study that has reported a cure for this disease after use of this drug.

Not one.

Nope. Autoimmune disease at this point is still without a cure. So I am trying to tell myself this:

Hey! Julia: Don't be getting all weirdo if you don't feel "all better" after taking this drug. Don't expect to have energy and ambition oozing from every pore. Don't expect to be able to eat a sleeve of saltine crackers without water. Don't expect to see all of your spots disappear within minutes of injection. Just.........don't expect anything. Instead, wait and see what happens.

A tall order for me. I don't listen to myself very well.

My first dose won't be given for two more weeks. And then another infusion in another two weeks. And then wait another six weeks to see if I'll benefit. Aaargh.

Patience....patience....patience.....patience....

Which Way is it Pointing?

Photo mine

Yesterday, John and I attended Mass at a church that we don't often frequent. It's a beautiful old church, full of rich colors and art and soaring architecture. I am inspired simply by being there.

As the service began, the lector stepped forward to read from the bible. I had noticed him as he entered the church: an elderly man with stooped posture, a slight tremor, and very pale skin. He approached the lectern with shuffling gait and took what seemed like forever to make his way up the steps, to open the book, then finally to speak.

I had expected to hear a voice that was as frail as his body appeared to be, but instead was rocked back in my seat as he began reading from the book of John in thunderous tones, each word perfectly articulated with power and emotion, yet totally void of theatrics; thus infusing the sacred text with life and zest without placing himself in the spotlight. What a talent -- to speak selflessly in delivering other's words with vigor and and reverence.

I could have listened for hours. It would have been so easy to close my eyes and imagine that I were hearing the disciple himself speak.

He read two passages from the bible, and then was silent for the rest of the Mass. I missed hearing him. I began to observe other participants in the service as they spoke or sang their parts, and although I'm certain they didn't intend to, they approached the microphone or lectern in a manner that brought attention to themselves: a straightening of the shoulders, a clearing of the throat, or most evident to me: a singing style that clearly set that person's voice in a different place than the congregation, even though we were all singing the same song.

I hadn't thought much about the importance of selflessness in this type of setting before. Selflessness in leading a group of people in worship or song or......well, anything, I guess. To teach a class or lead a service in a way that focuses the attention on the concepts, the materials, the information, the prayer, or the meaning in such a way that the deliverer of the message is the one simply holding the flashlight and directing it's bright beam on the important things while leaving himself anonymously in the dark.

I lack skill in handling that metaphorical flashlight. I seem to always be holding it backwards so that I stand completely in it's light.

Is that a good thing or a bad thing? While I acknowledge the importance of sharing personal experiences for the benefit of others, sometimes I forget that my life isn't actually all about ME. Hm. How do I turn that flashlight around?

Will Rituximab Make My Ears Turn Pink? Or Increase My Appetite for Cheese?

Jelly Belly image found on Wikimedia, here. I love 'em all. 

Awhile back, I shared my wah wah wah diagnosis of subacute cutaneous lupus erythematosis with y'all.

Or, in other words, my spots.

I really hated those spots. Not only because they weren't particularly attractive, but also because it was another indictor that my autoimmune disease was busy at work destroying yet another set of my body's cells. Dr. Young Guy changed up my medications at that point to include an immunosuppressant, Gengraf, a drug most commonly used in much larger doses to prevent transplanted organ rejection, but also used to suppress the autoimmune response.

About two weeks after I began taking Gengraf, my spots and splotches just magically seemed to fade and then disappear.

Woot! I was thrilled.

I was less than thrilled when eight weeks later, they returned. And brought dozens more of their spotty friends.

Yuck.

Secretly, I had hoped that my fatigue problem would disappear like my spots did. It didn't. And when my spots returned, it seemed that my fatigue just ratcheted up a notch.

So I trotted back to see Dr. Young Guy, bringing gifts of gourmet jelly beans. I always bring Dr. YG and his staff treats, because I always give my favorite people treats.

Dr. YG and I discussed my frustration with my very active disease process in spite of the use of several DMARDs (disease modifying anti rheumatic drugs). Our new plan of attack will include continuing all of the drugs that I'm currently taking: prednisone, plaquenil, Gengraf; and the addition of another: Rituxan.

Rituxan - or rituximab - is considered a biologic agent - a whole new world of drug experiences for me.

Wow, man.

Not only is it a biologic, it's a chimeric biologic, which means  two things: biologic -- a drug made from components of living things such as specific proteins; and chimeric -- (referring to a mythical beast made of different animals) made by fusing human proteins and animal proteins (frequently mouse) to create a very specific antibody. Rituxan or rituximab will attack a subset of my white blood cells -- B cells -- thought to be part of the destructive autoimmune chain of events.

Yup. You read that right. I'm going to be receiving itty bitty pieces of mousies right into my veins. Just like these:

sketches of mouse (top left), chimeric (top right),humanized (bottom left), chimeric/humanized (bottom middle), andhuman (bottom right) monoclonal antibodies.Human parts are shown in brown, non-human parts in blue. 

image found here. 

Rituximab is given via an intravenous infusion, and in the treatment of Sjogren's syndrome, most commonly is given every six to nine months. Dr. YG prescribes this drug with great caution, since it has the potential for very significant side effects, and only after the patient has tried - and failed to see results - from other more commonly used DMARDs.

The list of unusual but very significant problems related to rituximab is extensive, but the list of side effects which are most common isn't short, either: headache, fever, chills, nausea, heartburn, flushing, weakness, or dizziness. Among others.

Every time I re-read the information which accompanies the use of rituximab, I can't help but wonder if the risk is worth the benefit. But I have come to the conclusion that I am willing to give it a try under the very capable supervision of Dr. YG and the outpatient infusion department.

 When this drug is effective for Sjogren's syndrome, the benefit is significant. This from a 2010 study:


Effectiveness of rituximab treatment in primary Sjögren's syndrome: a randomized, double-blind, placebo-controlled trial.
Meijer JM, Meiners PM, Vissink A, Spijkervet FK, Abdulahad W, Kamminga N, Brouwer E, Kallenberg CG, Bootsma H.
Source
University Medical Center Groningen, University of Groningen, 9700 RB Groningen, The Netherlands.

In the rituximab group, significant improvements, in terms of the mean change from baseline compared with that in the placebo group, were found for the primary end point of the stimulated whole saliva flow rate (P = 0.038 versus placebo) and also for various laboratory parameters (B cell and rheumatoid factor [RF] levels), subjective parameters (Multidimensional Fatigue Inventory [MFI] scores and visual analog scale [VAS] scores for sicca symptoms), and extraglandular manifestations. Moreover, in comparison with baseline values, rituximab treatment significantly improved the stimulated whole saliva flow rate (P = 0.004) and several other variables (e.g., B cell and RF levels, unstimulated whole saliva flow rate, lacrimal gland function on the lissamine green test, MFI scores, Short Form 36 health survey scores, and VAS scores for sicca symptoms). One patient in the rituximab group developed mild serum sickness-like disease.
CONCLUSION:
These results indicate that rituximab is an effective and safe treatment strategy for patients with primary SS.

This study looked specifically at the effects on Sjogren's syndrome fatigue in the use of rituximab:

Reduction of fatigue in Sjögren syndrome with rituximab: results of a randomised, double-blind, placebo-controlled pilot study
S Dass, S J Bowman, E M Vital, K Ikeda, C T Pease, J Hamburger, A Richards, S Rauz, P Emery

Results: There was significant improvement from baseline in fatigue VAS in the rituximab group (p<0.001) in contrast to the placebo group (p = 0.147). There was a significant difference between the groups at 6 months in the social functioning score of SF-36 (p = 0.01) and a trend to significant difference in the mental health domain score of SF-36 (p = 0.06). There was one episode of serum sickness in the rituximab treated group.

I receive my first dose of rituximab in two weeks. I'll keep y'all posted. John and Greg will have a field day with the whole chimera/mouse/Julia thing. Hoo, boy.

Squee Maximum

Oh. My. Gosh.

Bev snagged me today for coffee and a visit to her daughter's house. Where there were KITTENS.

And

BABY CHICKS.

I was paralyzed by the extreme levels of cuteness. I may never recover.

Venus VS Sjogren's: Venus Wins This One

Image used with permission and found here. 

Venus Williams has to be thrilled with her 6-0, 6-3 victory over Kimiko Date-Krumm of Japan on Wednesday.

I know that I am.

Sjogren's: Love. Venus: Game!

Here's what this famous sjoggie had to say about her victory:

“I feel like a person that has an auto-immune disease,” Williams said when asked if she felt any fatigue. “You know, for me, I’m not going to probably feel like everybody else. But for me, my personal best is to give 100 percent.”
The rest of Williams’s answer was interrupted when her pet Havanese, Harold, climbed out of her bag and began to walk away.
“You know, someone with an auto-immune disease definitely faces different challenges than other people,” she said later. “But it doesn’t mean you can’t be successful.”

A focused and determined answer to a reporter's question.  But most importantly, a realistic answer. I think I may just borrow her, "I feel like a person that has an auto-immune disease." sentence.

Great volley, Venus.

I can only imagine what she could have said. Perhaps something along the lines of, "Fatigued? Duh!!" or she could have just dropped like a stone right on the baseline. Or she could have fibbed and said that she had beat Sjogren's and that the word fatigue is no longer in her vocabulary. Ah, but Venus is one smart cookie.

Notice that Venus doesn't say that she has conquered auto-immune disease, or that Sjogren's has conquered her. Her comment, "(A sjoggie) definitely faces different challenges than other people," is so simple yet true.

Life does change after the arrival of auto-imune disease. Not for the better - not for worse. The challenges in life simply change their character.

Read Between The Lines

Awhile back, I received an e-mail from a reader in which she asked, "How do you find the energy to DO all that stuff?!"

Hm. I hope that my posts don't lead y'all to think that I'm an Energizer Bunny over here just hopping from one place to the next, because nothing could be further from the truth.

The reality of things is this: Yep. I do lots and lots of things, and I take zillions of pictures on my adventures, and write a great deal about everything that happens.

But when you read posts which are basically a few pictures with a sentence or two; or I yoink someone else's clever or insightful post or picture (like this one that someone sent me via Facebook):

....or are copy and paste versions of some recent study with very little of my interpretations; this should tell you something.

It means that I don't have the energy to do anything else. I'm probably propped up in bed with my laptop on my knees and the schnauzers wedged in next to me as I rest for days and days. You may notice that these skimpy posts appear with regularity after I have a period of increased activity, such as a trip to the coast, for example. After which I spend two days doing nothing but posting pictures because I'm cashed out on the couch or zonked in my beddy-bye.

It's a secret code. And now you know the rest of the story.

It's All in the Wrist

Note the perfect wadding technique.

Today, I'm STILL eating salt water taffy; and still laughing about what happened to all those candy wrappers.

It went kind of like this: John and I and Terese and Greg were heading back from the beach. We had stopped at a candy shop on the way out. G and T wanted to give their bag of candy away as souvenirs, but I knew what I wanted to do with my hefty bag full of treats.

I wanted to eat 'em all the way home.

So as soon as we were rolling, I opened the bag and offered everyone a taffy.

No, thanks, everyone said politely.

I knew better. So I plucked my first yummy molasses salt water taffy morsel from the bag and unwrapped it. Mmmmm. Tooth-sticky deliciousness....I saw an empty plastic grocery bag on the floor of the car and hooked it over the cup holder to act as a garbage container.

Put your wrappers in here, I told Terese, pointing at the empty bag. Because even though she wasn't eating any candy at that point, I knew without a doubt that she would be soon. I was right. Seconds later she had her mouth full of wonderful sweet gooey stuff. And another second later we all did.

Here's where our memories differ in this little episode.

I DISTINCTLY REMEMBER with my COMPLETELY PERFECT and ALWAYS RELIABLE memory, that Terese took her wrapper, wadded it up, and in response to my suggestion of placing our candy wrappers neatly and tidily in a garbage receptacle, said: NO. LET's THROW THEM INSTEAD. After which she took aim and hit Greg directly on the back of his head.

She denies saying this.

Pffft. I was there. I know. AND I saw who threw the first white wax paper missile, which meant all-out war.

Our SUV must have looked like a rolling snow globe heading down the highway. I must say, my shot which sailed perfectly through the opening of the steering wheel after bouncing off John was quite impressive. Terese and I had the advantage early on in the battle since we were in the back seat and therefore had a better line of sight and more room for arm maneuvering.

Greg and John had no other options than simply to lob their wrappers over their heads in our general direction.

Weak.

So I had purchased a BIG bag of taffy, which meant the battle was ongoing for much of our two hour drive. When we stopped for gas, we all switched seats, putting Terese and I in the front and the guys in the back, which put them in the wrapper-throwing-advantage seats. They took full use of this.

Between dodging incoming taffy wrappers, I wondered aloud how this particular battle had begun, (I must admit that this was just one in a string of several) and reiterated my understanding of the time line of events, to which Terese vehemently disagreed.

"I didn't say that!" She indignantly claimed just as we were passing a giant JESUS SAVES SINNERS! billboard. I pointed an accusing finger at her and another at the billboard.

See that?! And you still want to stick to your story, Miss Liar-Liar-Pants-On-Fire?

"Hey! Ain't no pants on fire over here!" she sneered.

Hah! Take this! I clicked her seat heater button on HIGH and threatened to leave it there until she confessed.

Terese is so lucky that I could never make a living as a torturer. I relented after the first scream and squirm.

Ahhh. Beautiful scenery. Great friends. Throwing things. Torture.

Good times.

Sweet Things

Today, I'm eating salt water taffy and pretending that I'm still back there:  

What a Magnificent Weekend.....

I got my ocean fix over the weekend. It was wonderfully renewing and invigorating. 

Ahhhh.....

Sjoggie Stephen McPhail

Stephen McPhail plays football for Cardiff City Bluebirds, Wales, in the midfield position. Well.....he did. Until he was sidelined by Sjogren's syndrome earlier this season. But manager Malky Mackay and McPhail have announced the footballer's return to the game:

Doctors are ready to give McPhail – who has been battling against the autoimmune disease Sjogren’s Syndrome – the go-ahead to return against Coventry next Wednesday.
     McPhail is keen to play against Burnley on Sunday, saying “I’m ready and can’t wait to start chipping in and helping the lads.”

I don't usually follow football/soccer, but my interest is piqued.  I think I'm about to become a Cardiff fan, or more accurately, a Stephen McPhail fan. I'm a fan of any sjoggie that's able to persevere and continue to live their lives in spite of this dumb stupid disease.

Go, Bluebirds!

Image found on wikipedia, here.

Sjogren's Syndrome Foundation Patient Education Sheet: Tips for Brittle Nails

What a Guy

Last weekend, as we were zipping Goldie around Seattle, Terese's daughter asked me, "How old is your Prius?"

I had to do some mental math. Let's see....she was a present to me on my fiftieth birthday, so that makes her...um.....how old am I, Terese?

::Eye roll from Terese::

Oh, right. I'm going to be 55 in June so that makes Goldie almost five years old. Why?

"Because it still smells like a new car."

I refrained from correcting her regarding her use of a pronoun. Goldie is a SHE. Not an IT. Since Terese's daughter is such a peach, I let it slide. This time.

REALLY? But Goldie has to haul around two slobbering and stinky schnauzers and ME all the time. Just look at those windows!

Which was true. I carry paper towels and Windex in Goldie because Lulu and Maggie love rubbing their noses all over the windows. But on further reflection, I suppose Goldie is in pretty good shape for a car coming up on her fifth birthday. I can't take any credit whatsoever for this. It's all John.

When John and I first started dating, I had a car, and he kind of did. (He was driving his mom's old blue station wagon with a canoe strapped to the top. Honest.) My car was an AMC Concorde, brand spankin' new, thanks to the generosity of my parents to their very bratty daughter on her graduation from college. It was brown with a brown fake-leather landeau top. I called this car "The Woodtick."

Woodtick image found here. Mine looked exactly as shiny as this one after John arrived on the scene.

Hm. I'm realizing just now that I never gave Woodtick a gender. Wonder why. I suppose insects have genders, don't they?

After a few dates in the blue station wagon with the canoe on the top (John didn't want to take the canoe off because he didn't have a good place to store it. He figured it was just as safe on top of his car as anywhere else), we began taking the Woodtick on our outings. Since John was and is a much better driver than I am, I asked him if he would drive. From the minute that this man put his hands on the steering wheel, he took control.

"When is this car due for an oil change?"

Um. Oil change? (Don't tell my Dad this. He spent far too many hours explaining how to maintain a car to me. I just wasn't listening, as usual.)

"Let's see......how many miles do you have on it....OK, I think I should change the oil. Do you know what weight oil you should use and what size oil filter?"

Oil weight? Filter?

"Julia! This is a new car! You really need to take care of it!"

Hey. No mouthing off to me on the first month of dating, mister. Or there will be no SECOND month.

"I'm serious. And it's really pretty dirty. When did you wash it last?"

Wash it?

We were heading home after an afternoon at the lake, and he pulled the Woodtick into my apartment's parking lot close to a water spigot.

"Got a bucket and a sponge?"

And so it began. I ran for the bucket and sponge -- and my camera.

Oh, yeah. I knew immediately that he was a keeper.

Some things never change, I guess. John is still washing my cars and I'm still running for my camera.

Ahhh. Life is good.

Sjogren's Syndrome Knowledge Base

The most recent issue of Sjogren's Quarterly included an article highlighting the formation of a new Sjogren's database:

by Sven-Ulrik Gorr, Seshagiri R. Nandula, and Trevor Wennblom, University of Minnesota; Sara Michie, Stanford University; Ammon B. Peck, University of Florida; Steve Horvath and David T.W. Wong, University of California at Los Angeles


A new database has just been launched to provide an easy-to-use and integrated Sjogren's Syndrome Knowledge Base (SSKB; http://sskb.umn.edu) is open for use by all researchers and the public at large and includes genes and proteins linked to Sjogren's. As founders of this tool, we hope and expect that it will have a profound impact on future research in this disease and ultimately stimulate the formulation and testing of new hypotheses and experimental approaches to investigations into Sjogren's. 
     Sjogren's syndrome and other autoimmune diseases are complex diseases that involve many events that lead to disease initiation and progression. In Sjogren's it is not clear how environmental triggering events combine with cellular and genetic factors to cause an immunologic attack on the salivary and tear glands that ultimately leads to the symptoms of dry mouth and dry eye. The observation that diagnosis often lags behind the onset of disease by a decade or more further complicates the understanding of disease initiation and progression. Thus, despite the substantial efforts by clinicians and researchers around the world, Sjogren's still presents many questions: how is the disease triggered, what is the contribution of genetic susceptibility, how can we improve diagnosis, and what is the optimal treatment for any individual patient? 

Excellent.

The Sjogren's Quarterly -- aimed at medical professionals and researchers -- is yet another amazing product of the Sjogren's Syndrome Foundation.

Go. Join. Add your support to this most desperately needed research.

Snapshots

It's been a busy few days for Terese, Goldie, and me. Here's proof.

Where my son and his fiance will be married this summer:

Dale Chihuly glass:

Irish Death beer for breakfast:

Don't ask. You don't want to know. 

All photos mine.