Advice

Image by Whiteling and found on johnnydeppreads.com.

I have an extremely important volunteer position at our church. I simply don't know how our parish would survive without my efforts most Friday mornings when I put the various inserts into Sunday's bulletins, commonly known around here as "stuffing".

It's a liturgical term, I'm sure.

My friend Agnes and I usually are in charge of the stuffing process, which goes something like this: we lay out the various inserts in neat stacks next to the pile of bulletins. Then, after daintily licking the index finger, we snag each of the papers and stuff them into the bulletin. I wonder if everyone in our parish knows that when they grab a bulletin, it has a minuscule amount of my spit on the top right corner of each inserted page.....hmm. Well, sometimes there's a spit addition. There's those days when my mouth feels all cottony dry in which I grab a paper towel and soak it with water and put it next to the first stack of papers. THEN I lick my finger, stick it on the wet paper towel and THEN start snagging papers.

Oh, stop making that EWWWWW face. Y'all lick your fingers when you turn a page all. the. time. I just know it.

So, anyway, last Friday as I was sitting in the parish office working on this vital task as Terese and Father O. and the rest of the staff were working on much less important things, I heard Fr. walk by the desk humming a tune. I couldn't place it.....Terese perked up her ears and asked, "Sweeney Todd?"

Fr. grinned. "Yup."

Sweeney Todd? Never heard of it. They both looked at me with skepticism.

"Johnny Depp? Tim Burton? Musical about a murdering barber?"

No, never have seen it.

Father O. said, "Oh, it's GREAT. I'll loan you my copy."

Terese agreed. "It's got some good music. And a barber chair that dumps people into a meat grinder." She smiled broadly. Her enthusiasm for this gross stuff wasn't surprising to me at all since I know that this seemingly demure and quiet (pffffftttttttt) woman has a passion for watching blood and guts movies. But that's a whole another story..

Sure enough, a few days later, Terese handed me a dvd case with a post-it note stuck to the cover: For Julia.

After Mass the other day while the congregation was filing out of the church, I stopped by to greet Fr. O. As he took my hand he asked with a mischievous smile, "So? What did you think about the movie?"

A friend walking by stopped to listen, then chortled when she found out that we were not talking about a religiously-themed movie, like a biography of a saint, or something like that.

No. We were talking about a story about a maniacal barber and his weirdo associates that grind people up and sell them as meat pies.

So.................my spiritual advisor recommended that I watch a gruesome horror movie. Ahhh. I love my parish.

Sjogren's Syndrome Foundation Patient Education Sheet: Simple Solutions for Treating Dry Mouth

Recently a friend asked me for suggestions in treating dry mouth which was caused by medications, not Sjogren's. I scrolled down through my side-bar on Reasonably Well to copy and send her the Sjogren's Syndrome Foundation Patient Education sheet on dry mouth and realized.........that it wasn't there!

Good grief. The dry mouth patient education sheet should have been the very FIRST one on my sidebar!

So. Here it is, only about three years and 1,396 posts (really!) later:

Sjogren's Syndrome Foundation Patient Education Sheet

Simple Solutions for Treating Dry Mouth

Clinicians: Please make as many copies of this Patient Education Sheet as you want and distribute to your patients. 

The SSF thanks Frederick Vivino, MD, FACR, University of Pennsylvania, Penn Rheumatology Associates & Sjögren’s Syndrome Center, Philadelphia, for authoring “Simple Solutions for Treating Dry Mouth.”

• Ask your family doctor to discontinue or provide substitutes for all medications that cause dry mouth.
• Eat smaller, more frequent meals to stimulate saliva flow.
• Increase your intake of liquids (e.g. water, diet soda) during the day. Small sips work best.
• Minimize time in air-conditioned environments such as offices, supermarkets, airplanes, etc.
• Use a humidifier at bedtime (target humidity 40-50%) during the fall and winter months when the air is dry to increase nighttime moisture and decrease discomfort.
• Stop cigarette, cigar and pipe smoking to lessen dryness and your risk for other health problems.
• Chew sugar-free gum or suck on hard diabetic or sugar-free candies, fruit pits or lemon rinds to activate reflexes that will increase saliva. Look for products containing xylitol, a sweetner that may help prevent dental decay.
• Try artificial salivas. Use 2-3 squirts in the mouth every hour while awake and at nighttime as needed. Do not spit out any preparation that is safe to swallow to help it last longer.
• Avoid mouthwashes, fluoride rinses or products containing alcohol or witch hazel that can aggravate oral dryness or burning.
• Apply vitamin E oil (use liquid or punch hole in capsules) or moisturing gels to dry or sore parts of the mouth or tongue. Use 2-3x/day after meals, at bedtime, when talking for long periods, exercising, or any other time your mouth needs long-lasting relief.

Contact the Sjögren’s Syndrome Foundation to obtain a copy of its Product Directory, available free of charge to all members.
For more information on Sjogren's syndrome, visit the SSF Web site at www.sjogrens.org, call 1-800-475-6473, e-mail ssf@sjogrens.org or write to the Sjögren’s Syndrome Foundation, 6707 Democracy Blvd, Suite 325, Bethesda, MD 20817.

Free: "What Every American Needs to Know About Autoimmune Disease"

This presentation looks to be amazingly good! If you're in the Portland, OR area on Saturday, August 4th, consider attending. Register here.

Presenting Partners:

Oregon Health & Science University

Autoimmune Diseases Association

National Psoriasis Foundation

 “What Every American Needs to Know

About Autoimmune Disease”

This FREE conference is open to autoimmune patients, their families,

healthcare providers, and the general public

Saturday, August 4, 2012

10:00 AM - 4:00 PM (Registration begins at 9:30)

Oregon Health & Science University (OHSU)

Doernbecher Children’s Hospital

 Vey Conference Center (11^th floor)

700 SW Campus Drive

Portland, OR 97239

09:30 AM       Registration/Exhibits

10:00 AM       Welcome –James Rosenbaum, MD, Professor, Chair, Division of Arthritis and Rheumatic Diseases, Director, Uveitis Clinic, Casey Eye Institute

10:05 AM       What is Autoimmunity? – Noel R. Rose, MD, PhD, Director, Autoimmune Disease Research Center, Johns Hopkins University

10:35 AM       Women and Autoimmune Disease – Rita Baron-Faust, MPH, CHES – author of The Autoimmune Connection

11:00 AM      Autoimmune Diseases of the Skin – Lynne Morrison, MD, Associate Professor of Dermatology, OHSU

11:30 PM       Overview of Rheumatic Diseases – Leslie Kahl, MD, Professor of Medicine, Associate Dean of School of Medicine, OHSU

 12:00 PM       Lunch Break **(lunch for pre-registered attendees)

  12:45 PM       Ankylosing Spondylitis – Atul Deodhar, MD, Professor of Medicine, Arthritis and Rheumatic Diseases, OHSU

  1:15 PM        Rheumatoid Arthritis-more than a joint problem, better treated early – Cong-Qui Chu, MD, PhD, Assistant Professor of Medicine, Arthritis and Rheumatic Diseases, OHSU

  1:45 PM        Vasculitis – Ajay Wanchu, MD, Associate Professor of Medicine, Arthritis and Rheumatic Diseases, OHSU

  2:15 PM        Break

  2:25 PM        Autoimmune Diseases in the Digestive System with Emphasis on Inflammatory Bowel Diseases – Judy Collins, MD, Associate Professor of Medicine, OHSU, Section Chief of Gastroenterology, Portland VAMC

  2:55 PM        Pain Management – Kim Mauer, MD, Assistant Professor of Anesthesiology, OHSU

  3:25 PM        Being Your Own Best Advocate – Virginia Ladd, President and Executive Director, AARDA

  3:50 PM        Questions

Limited Seating - Registration is Required.

**Dietary restriction? Call us at 586-776-3900.

American Autoimmune Related Diseases Association

22100 Gratiot Ave, Eastpointe, MI 48021 www.aarda.org  ph: 586-776-3900

Sponsored by educational grants from Genentech and GlaxoSmithKline

Smoothies for Sjogren's

My June issue arrived tattered and dog-eared. Poor thing. I hope it's because someone in a mail room somewhere was paging through it and reading EVERY WORD. 

The June issue of the Sjogren's Syndrome Foundation's publication The Moisture Seekers is, as usual, packed with goodies. Of particular interest in this issue was the annual list of SSF volunteer awards which were announced at this year's National Patient Conference held in La Jolla, California.

All awardees contributed in impressive ways to the education, advocacy, and awareness of Sjogren's syndrome, but the accomplishments of the recipients of the Development Services Award -- The Sosin family -- were exceptionally inspirational.

This from June 2012 The Moisture Seekers Newsletter:

Development Service Award -- The Sosin Family 

From the moment their daughter, Paula, was diagnosed in her teens, the Sosin Family has rallied behind her. The Sosin Family exemplifies an award-winning family. 

The Sosin family started by getting involved in their local Sjogren's Walkabout by raising funds and bringing a team of family and friends to join the Walkabout. To date, the Sousin family has raised over $22,000 for the SSF.  

Part of these funds each year come from events and promotions using their family-owned Ben & Jerry's store in Maryland. Each May, the store holds and event called "Smoothies for Paula." This promotion gives the SSF $1 from every smoothie sold in the month of May.  

And as if "Smoothies for Paula" wasn't enough, the Sosins once again stepped up to support the SSF by using their storefront as a way to increase awareness. Each year in April, Ben & Jerry's holds a nationwide Free Cone Day. The Sosin Family again found a way to increase awareness and raise funds by having the SSF manage a table at their store on Free Cone Day to collect donations. In 2011, the SSF collected over $1,000 in donations and spoke to over 900 customers who came in for their free cone.  

In addition, both Paula and her mom have served as Awareness Ambassadors for the SSF and just recently, after graduating from the University of Delaware and moving to New York City, Paula volunteered to start a "Under 40 with Sjogren's" support group.  

So when we say it's a family affair, it really is! Marc and Bonnie (Paula's parents) and Yale (Paula's brother), along with Paula's determination -- are not done yet! They have vowed to continue until sjogren's is well-known nationwide! 

Yeah, Sosin family! All Sjogren's syndrome awareness and research funding is desperately needed, but spotlighting the need for early diagnosis and treatment of young sjoggies is especially important.

If I were in their neighborhood, I'd spring for a Smoothie for Paula. What a great idea. Wonder if they have mango......mmmmm........

If you, like me, were unable to attend the 2012 National Patient Conference, you can purchase audio CDs containing six of of the presentations by visiting the Sjogren's Syndrome Foundation website, or by calling the SSF office at 800-475-6473.

We Know How You Feel

Image found on Wikipedia. 

I read this quote from famous sjoggie Venus Williams on the Express.co.uk with a heavy heart:

For Venus, just stepping back on to grass will be a major achievement. “Every morning I wake up and I don’t know how I will feel,” she said. “My biggest challenge now is learning how to live like this.” 

Some days she can hardly get out of bed, her joints hurt and creak. She is on a vegan diet and in an attempt to live with the pain has taken up karaoke, singing away to Whitney Houston and Mariah Carey. 

“I’m no longer in control of my life,” said Venus. “That’s what it’s like for me now. I suppose though it could be a lot worse.” 

She is suffering from Sjogren’s Syndrome which threatens to rule every minute of her waking day. “Rolling the dice, I call it,” she said. “I don’t know how I am going to be.”
If she cannot hit a tennis ball because of the discomfort, she instead sings along to the music that has become her therapy. Playing tennis is a minor miracle. “I tell people it’s like going to a motor race,” said Venus. “The other cars are ready, the drivers are prepared, only Williams is not ready, not prepared the way she wants to be. 

“But I must strive for what I want and that is to be an Olympian again. Some days I despair, others I feel like I did when I won Wimbledon."

Ah, Venus. We are ALL challenged by learning how to live with Sjogren's syndrome. Hang in there, girl. We're all cheering you on.

How About This One?

After the publication of my Sjoggie Nation post, my friend Shara suggested an anthem, loosely based on Perry Como's "Seattle". How appropriate:


When it's time to leave your family and your loved ones
It's the hardest thing a Sjoggie can ever do
an' you pray that you can find someone warm and sweet and kind
But your not sure what's waiting there for you

The bluest sky's you've ever seen are in the Northwest
and the hills the greenest green in the Northwest
Like a beautiful child growing up free and wild
Full of hopes an' full of deer's,full of laughter, full of tears
Full of moisture to last the years, in the Northwest
...in the Northwest.

< instrumental break>

When you find your own true love you will know it
By your smile by the look in your eyes
Sent of pine trees in the air, never knew a day so fair
It makes you feel that your so moist that you could cry!

The bluest sky's you've ever seen are in the Northwest
And the hills the greenest green in the Northwest
Like a beautiful child growing up free and wild
Full of hopes and full of deers, full of laughter, full of tears
Full of moisture to last the years, in the Northwest
...in the Northwest.

In the Northwest...for Sjoggies in the Northwest...in the Northwest.

Brilliant!! Now we need a flag.......

Here's Perry's version.

Sisters.....Sisters.....

When I think about what my daughters would find memorable from my son's wedding, it certainly would not have been this from D#2:

My brother and his wonderful bride are now married.
The wedding was absolutely beautiful. The flowers were gorgeous, the cake was fantastic, the music was wonderful, the couple was radiant.  

My sister and I were given the honor of being in the wedding party. Along with our bridesmaid duties of foofing the bride's train and holding her bouquet, we were asked to read two bible passages that the bride and groom picked out for the wedding ceremony.
I love my sister. She's always been my confidante, supporter, cheerleader, and friend. If there is one thing that I can be sure of, it's that my sister will always, ALWAYS have my back.  

With that being said, my sister and I (since, being siblings, we are STRICTLY obligated to do so) take great pride in driving each other nuts.  

This past Thursday, since we had several relatives flying in from out of state, my parents decided to take us all out for dinner for a pre-wedding get together. We went to the Taphouse grill in Seattle, which has an EXCELLENT pescetarian menu (Yup. I'm a pescetarian now. That's a post for another day, though.) 

As we were waiting for our meals, the groom-to-be then asked us to read the wedding ceremony passages for a bit of entertainment. I opted to go first, (since my verse, 1 Corinthians 13, has been engraved into my brain since the fifth grade). I read the verse, and after a graceful pause, looking up demurely, and gently orating, "The word of the Lord", I sat down with a small flourish. Pretentious? Admittedly, yes. I should have known better.  

My sister, with a mischievous twinkle in her eye, then got up to read her verse. Or so I thought.
She stood up,  cleared her throat, gestured toward me, and with a smirk, read:  

"We have a little sister.
She has no breasts." 

(Readers, this is actually in the Bible. Song of Songs 8:9). 

The table erupted with laughter as my sister dodged a container of tartar sauce.  

The Good Word is used for many things, Readers. It is used to bring comfort, reassurance, and hope. Sadly, it is also used to bring division and hate.
I'm not sure if our Lord intended for his Word to be used for picking on one's siblings.  One thing is for certain, though, Readers: as we were all laughing our butts off, I'm pretty sure that God was laughing with us. 

Goodness. What's a mother to do with girls like these?? Hug 'em, I suppose. My two girlies love this sisterly excerpt from White Christmas:

It's An Adventure

Life is complex, isn't it?

I'm trying to fully absorb the recent news of the death of my brother-in-law.

In the midst of such excitement and joy that accompanies our son and bride's new life together, how sobering to consider the end of another life.

I will miss him. I'll miss the way he pronounced my name as "CHulia", his enormous collection of pithy and humorously labeled t-shirts, our vacations together, his irreverent and yet loving sense of humor.

I will miss having scooter races with him. I'll miss scooter square dancing with him. (It was memorable.) I will miss playing cards with him. I will miss hearing all the wonderful stories that he had to tell about his travels with his wife all over the United States. Like the time he and his wife drove a full day to sample what they heard was the best chili EVER.

It wasn't. But they had a wonderful time, so who cares?

He died suddenly, while he and his wife were on a road trip. Which, I would guess, would be exactly the way he would have wanted his life to end: on the road and looking forward to the next great adventure.

Bon voyage, John.

Sjoggie Nation

Map of paradise found here. Actually, I don't think California is an official part of the PNW but I didn't want to hurt anyone's feelings. 

I've noticed several comments from readers indicating that they are considering moving to the Pacific Northwest, and my response to that would be, Heck, yeah!

This side of the world needs more sjoggies. As a matter of fact, this state needs more sjoggies. And as another matter of fact......this world needs a sjoggie NATION.

How cool would that be?

Sjoggies unite! We could......we could.....well, we'd make darned sure that our state would have lots and lots of drinking water around. And lots and lots of bathrooms......hehe. Everyone would look cool wearing a hat because we ALL would be wearing a hat and be slick with sunscreen.

Anyone want to take a crack at deciding what our national anthem would be?

I would agree with the readers that voiced their opinion that this area is a great place to live; the moisture laden winters among many, many other reasons.

However.

I feel obliged to elaborate just a bit on other aspects of life here in the Pacific Northwest in the spirit of the whole "truth in advertising" thing. I'd love to have y'all as neighbors but I would want you to know what you would be getting yourself into, should that happen...

I have a friend who moved here from Texas. She and her family moved here because of her husband's job relocation, and I have to say that she really, really dislikes the weather here. She just can't seem to tolerate the months and months of  rainy and cloudy weather that appears around October and ends somewhere in June/July. Of course she approves of our wonderful sunny summers, but those winters really affect her.

Which is why our doctors around here recommend that everyone take a vitamin D supplement. She's right: we see very little of the sun during wintertime.

But then....spring comes and brings with it every kind of bloom imaginable; followed by glorious crisp clear sunny summer days all the way through September.

Ahhhhh.

So y'all have been forewarned. But I'd love to have more sjoggie neighbors! We could have our own neighborhood.....village.....town.....the sky's the limit!

I'd have to be president, of course.

Not Disappointed

Yesterday, John had one remaining day of wedding-stuff vacation. The weather was amazing: blue skies and temps in the '70s. Since we had no remaining wedding stuff to do, we snagged the schnauzers and headed for the coast. Ahhh. What a great idea. What a great day.

We pointed Goldie towards Cape Disappointment, so named according to Wikipedia:
The cape was named on April 12, 1788 by British fur trader John Meares who was sailing south from Nootka in search of trade. After a storm, he turned his ship around just north of the Cape and therefore just missed the discovery of the Columbia River. Alternatively, the cape may have been named in Nov. 1805 by a member of the Lewis & Clark Expedition, which had recently succeeded in reaching the Pacific, when he found no ships in the vicinity, according to the journal of the expedition as recited in the Ken Burns documentary.

Well. We have never been disappointed when we visit there, and yesterday was no exception.

How Did It Happen?

Yes. Those are my feet. And those are NOT MY UNDERTHINGS. Confused? See my previous post.  

I've waited a few days until after my son's wedding to do an evaluation of my stamina through it all. I've waited because I wanted to take note of my response not only to the week preceding and the day of the wedding, but also to the days that followed.

Overall, I think I came through with flying colors.

The realization that I had not only survived, but thrived during this very busy and emotional time came when I complained that my feet hurt because I had been on them all day. ALL DAY of the rehearsal day, and ALL DAY of the wedding. I had been on my feet for two days straight, and those tootsies hurt.

Well, now. I can't recall the last time that my feet hurt simply because I had walked them around too much. YESSSSS.

I loved that pain. I relished every wince that I took as I continued to walk those swollen tootsies around. I smiled when I peeled my shoes off and told John that I needed to give my feet a good old fashioned soaking. I smugly noted to anyone that would listen that I had worn out my shoes that weekend.

I still am processing the fact that I was able to physically and mentally be present for the wedding. I experienced it all, from beginning to end without having to excuse myself to go crash somewhere in a sweating quivering mess.

What a gift. What an amazing, extraordinary experience.

So I guess the question would be why -- what did I do, or how did I manage my energy, or by what means did I successfully cruise through this high energy week?

Hm. I think.........and I'm somewhat hesitant to say this.....but I think that my rituximab treatment had to have something to do with my increased energy levels. Over the past two weeks, I had noticed a gradual rise in my energy. I tried not to become too excited about it, and attempted to evaluate this in the most objective manner possible. I hated to say anything in fear that once the words, "I feel somewhat more energized lately!" were out of my mouth, my newfound and very enjoyable state would disappear in a disappointing poof.

Yes, I was tired after we waved good-bye to the happy couple as they boarded their cruise ship for the honeymoon. But I was able to shuttle guests to the airport and drive myself the three hours home. John and I both have taken a couple days to rest up after all of the hoopla.

But I didn't crash. I have to say that I didn't experience that dreaded cold-icy-clammy-skin-mindless feeling that accompanies an epic energy loss. Not once during the whole week.

Thank you, thank you......who or whatever was responsible for this. Was it the mousie drugs? Was it the result of all those prayers said for me? Was it the result of careful scheduling of rest periods?

Who knows. Probably each of those things contributed. But I have to say that I'm enormously grateful.

Ahhhh. Thank you.

A Hard Act To Follow

I wanted to time the publish date of this post so that the likelihood of Terese reading it was small......but couldn't manage to figure out when that would be. So she's probably going to read this, and I suppose that will have to be OK.

The reason I was reluctant to have her read this is because I have to admit that her evil practical joke came off without a hitch at my son's reception and was without a doubt, brilliant. And hilarious.

It went like this:

Against all odds, I had actually made it to my son's wedding reception with all of my garments un-goobered and securely attached. I hadn't fallen off my shoes, or injured myself in any way.

Woo hoo!

I was mixing and mingling at the reception feeling a huge sense of joy and excitement and relief, when I approached my table for the dinner and noticed a small circle of people watching me with barely controlled amusement. I stopped in my tracks and looked at them skeptically.

Greg let his gaze drop meaningfully to the floor beneath my chair. Where there was a small heap of lingerie. Specifically, three SLIPS. Which looked remarkably as though they had fallen off my body while I was sitting on my chair.

Yes. It indeed appeared that I had dropped my undergarments in a very public place one again.

Immediately, I made a beeline for Terese and began strangling her. Of course. But I couldn't stop laughing long enough to complete the task......

Oh, man.

What I found out later is that Terese went around the reception asking various women if they were wearing half slips, then talked them into actually removing them and depositing them under my chair.

What can I say? It was perfect.

Guys. Revenge will be sweet -- but it's going to be pretty hard to top this one.

Here I am in the midst of my strangle attempt. Hm. Might have been more effective if I had used my pearls instead of bare hands.....

I Couldn't Ask For Anything More

Proof:
a) That this lovely young couple was indeed joined in marriage.

b) That my undergarments stayed secured to my fanny.

Ahhhhhhh.

Guys.

It was a wedding day miracle.

None of my clothing fell off. I didn't crash and burn. And I only said a few really stupid things. I didn't fall over my feet on the way down or up the aisle, and I didn't goober anything down my dress.

My son and his bride were blissfully happy.

It was a perfect day.

Remind me to tell you about Terese. I hate to admit it but........best practical joke EVER.

Just don't tell her that. See y'all tomorrow.

I'm Lovin' It

Good Times!

Partying with my seestahs! Pics to follow ...... Maybe.....

Take Me Away

Last weekend, the weather was just crummy. Cold, rainy.....and I was cranky.

This shocks you, I'm certain.

My crankiness, I mean......

So I whined around the house long enough until John took the hint and stopped working his way through the "weekend honey-do" list, bless him, and asked if I wanted to just go for a ride. We'd find some sunshine and have an early dinner.

I hugged him, we hopped into Goldie, and headed East.

Dang. I forgot to take Canon. Iphone pictures aren't nearly as good. We headed into the rain and the clouds and up into the Cascades.

Bleah. What a grainy picture. It made me even crankier. But this made me less grumpy:

I love crossing the mountains.

Little by little, the rain disappeared, and suddenly......we saw patches of blue. Seems as though there's almost always bits of sunshine on the East side of the Cascades.

Oooooo. Ahhhh. See the person on the left side of this picture? That craaaazzzzyyy man was preparing to put his body and his wind surfing board into the Columbia river which at this time of the year is very high, swift, and full of glacier melt-off. Brrrrr. Good thing he had a thermal wetsuit on. But I still say he was crazy.

Unlike this man, who is amazing.

We stayed just long enough to grab a quick McDonald's supper and soak up a few sunbeams......

 .......then headed back home.

And back into the rain.

It's amazing what just a couple hours with John and Goldie can do for my spirits.

And So It Begins

Heading up north to hang out with my son and his fiance as we put the finishing touches on the wedding preparations.

See y'all tomorrow. In the meantime, here's your assignment: There's a NEW -- well, two week old -- Simon's Cat up on YouTube. Watch. Enjoy.

Be good.

Program Procrastination.....

I am very preoccupied today. And it's all my own dumb stupid fault.

I had agreed to create my son and his fiance's wedding programs, and I did -- while yoinking ideas and help from everyone imaginable. Thinking that I had this cat totally in the bag.......was a big mistake. Which was made glaringly obvious to me as I smugly presented my thumb drive loaded up with what I thought was the perfect file to the printing company guy. He downloaded my gorgeous, amazing, and perfect program file, looked at his computer screen, then back at me with a skeptical look.

"Hm. So you're going with six full 8 1/2 X 11 inch pages?"

Ummm....... No, actually I want the size that you get when you take a bunch of those sized papers and then fold them all together. In half.

"O.........K........." I could see him literally restrain himself from doing a facepalm. Or doing some other gesture that would indicate significant frustration with this clueless customer.

"I hate to tell you this but you're going to have to go back and redo mostly everything here. If we go with a 5 1/2 X 8 1/2 inch program....that's the size you want, by the way......then all of the spacing and configurations and font sizes will be all different than the ones that you have on this file."

O.......K........ Here I actually DID a facepalm. Good grief in a bucket.

Mr. Printing Company Guy looked at me anxiously, probably wondering if I was going to melt down at this point. There was a line beginning to form behind me and I'm sure this guy had better things to do than hand tissues to a weepy and confused woman while coaxing her down from his service counter as she stomped the computer and cash register in a  rage. He quickly adopted a soothing yet slightly panicked tone.

"Look. Just go back into whatever program that you created this document with and change the page setup to what we discussed. Then don't freak out when everything looks different -- you just have to play around with spacing and font sizes until you like what you see."

Silence.

"Um. That make sense? It's going to be fine, really it is..."

Sigh. Sure.

I held my hand out and he dropped my thumb drive into my palm, then looked at me a bit fearfully. "See ya. We're open until 11 pm."

Well, crumb. I'd been sitting on this thing for the last three days thinking that all I had to do was blow into this place, throw them my files, swipe the debit card and we're outta here! Dang. I could have been re-spacing and formatting and whatever the heck it is that needs to be done all weekend. But NOOOOOO.

So now y'all know what I'm doing at the moment. Oh....and....um.... disregard any news reports about a crazed woman drop-kicking her laptop around Portland. They're just vicious rumors......probably started by some print shop guy....

Can You Cry Without Tears?

Image found here. 

Here's a Monday morning question for y'all to ponder:

Does the inability to make tears, and thus cry, impact sjoggies' emotions?

What do you think? Here's how the authors of a recent study phrased their study focus:

The hampered ability to cry in patients with Sjögren's syndrome may affect their ways of dealing with emotions. The aim of this study was to examine differences in emotion processing and regulation between people with and without Sjögren's syndrome and correlations of emotion processing and regulation with mental well-being.

I'm going to let you think about that a bit before I tell you the results of their study and provide the link.

Here's my thoughts:

First of all, I understand that these study authors, whose area of expertise is mental health, would want to explore any and all factors that may give us clues to how our bodies regulate emotions. But......I seriously doubt that my emotions are dictated by the amount of oils and enzymes and water secreted by my lacrimal glands.

I think the researchers put the cart before the horse here. I don't doubt for a moment that it is my emotions that dictate whether or not my lacrimal glands would kick into production. I think perhaps these researchers should review their anatomy and physiology in respect to tear production. Remember, guys? There's three types of tears, and only one is related to emotion:

The third type of tears is emotional tears. It all starts in the cerebrum where sadness is registered. The endocrine system is then triggered to release hormones to the ocular area, which then causes tears to form. Emotional tears are common among people who see Bambi's mother die or who suffer personal losses.

People: CEREBRUM. Anatomy and physiology 101. Review.

Dang. I HATE the movie Bambi.....sob.

(Extra credit points for anyone who can identify the other two types of tears.)

Although I have to admit that the concept of this study is somewhat interesting, it didn't take long for me to come to my own conclusion. And, after thinking about it, the fact that the study actually was granted funding and conducted seems to me just another indication of the persistence of the archaic notion that some of the systemic symptoms of Sjogren's syndrome are "all in your head". Or that a sjoggie struggling with a life-altering disease is actually deficient in "emotion processing and regulation" of their mental health and well-being. Personally, I think the overwhelming majority of sjoggies deal with the major changes in their health and lives in an amazingly competent and normal manner; and they process and regulate their emotions just fine, given the circumstances, thank you very much.

.:Indignant sniff:.

Not surprisingly, here's the results of the study:

This study indicates that, except for selected patients, processing and regulation of emotions is not a key therapeutic issue for the majority of patients with Sjögren's syndrome.

Well, DUH.

I know...... I'm being all touchy and cranky about this subject, and have probably overreacted. Perhaps my processing and regulation of emotion is actually a key therapeutic issue for me after all.

 Go read it and decide for yourself:


Dealing with emotions when the ability to cry is hampered: emotion processing and regulation in patients with primary Sjögren's syndrome.

Van Leeuwen N, Bossema ER, Van Middendorp H, Kruize AA, Bootsma H, Bijlsma JW, Geenen R.

Department of Clinical and Health Psychology, Utrecht University, & Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht, The Netherlands. n.vanleeuwen@uu.nl.

Smile For The Camera

Image found on Wikipedia.

With my son's wedding approaching at the speed of light, it's going to be hard for me to think about anything but the impending nuptials for the next week. I'll try to throw in the occasional semi-serious type post when I can, but I know my strengths, and staying focused and serious before a big life event is definitely not one of them. Y'all are stuck with wedding bell-like posts for the next week or so.

Sorry.

So in preparation for the big hoo-rah, Greg and Terese have purchased a brand spankin' new video camera and have volunteered to video the ceremony. I thought this was one of the most generous gestures EVER. Until Greg brought his new toy along to his birthday party last night.

Oh, and happy birthday, Greg! You young thing, you.

Yeah. Well. So he took this teensy little piece of hardware out of an itty bitty box and showed it to us -- wow, those things are so small these days. I remember when we used to rent a camcorder a few times a year just to video the kids when they were little. It was this behemoth thing that John had to sling over his shoulder and had monster cables trailing along behind it.

How times have changed.

Neato! I told him. What a cool camcorder! And then....

He pointed it at me and pushed the record button.

Hey! Put that thing away!

"How do you like being on the receiving end of the whole camera thing, Julia? Hmmmm?", said Greg smugly as the red light was flashing and my frizzy hair, triple chin, and makeup-less face was being recorded for all posterity.

Not much, Greg, buddy old pal. Not much at all. Gimme that thing.

I marveled as I panned around the table, with Terese sticking her tongue out and John feigning picking his nose.

Ok -- to clarify -- I marveled at how easy the thing was to use, not in response to my dinner companions' reactions. I'm used to these people. I turned the record button off, and examined the camera. I noticed that it was small enough that I could just indefinitely pack it away in my purse or wherever to avoid more audio/visual Julia documentation. But then I realized that this probably wouldn't be wise seeing as:

a) Greg and Terese would notice that it was missing. Eventually.
b) After which I'd probably suffer bodily harm.
c) Greg promised to video my son's wedding, and would probably need this device to do so.

Drat.

I HATE seeing myself on video. I may need to learn how to do some serious video editing.........after the wedding.

Sjogren's Syndrome Foundation: Victory

Back in April, Steven Taylor, SSF CEO, testified before the Subcommittee on Oversight of the House Committee on Ways and Means hearing. His focus was representing the Sjogren's syndrome community's reliance on OTC products, which would be excluded from health savings accounts and flexible savings accounts; unless the patient had a prescription written by their doctor for those specific over the counter products.

Can you imagine having to get a prescription for every bottle of eye drops purchased? That is, if you use funds from these HSAs/FSAs, which John and I do.

Honestly.

But thanks to Steven's testimony, the Affordable Care Act, which was passed two days ago in the House of Representatives, now includes a provision repealing limitations on the purchase of over-the counter (OTC) products.

You can read more about this outstanding advocacy effort by the Sjogren's Syndrome Foundation and see a video of Steven's Taylor's testimony on their blog, here, and you can read the written testimony here.

Excellent.

Romper Room

So my son's wedding is one week from Saturday. I am rather proud of the fact that I shopped for my dress and shoes and all of that stuff well ahead of time, with the exception of one very important category of mother-of-the-groom essentials.

The.....um....foundation garments.

Yes. This is an underwear post, so if you're squeamish, quit reading now. Don't say that I didn't warn you.

I wanted to be very choosy in my selection of undergarments for the wedding, since I have a lousy track record in wearing these types of items. You can review my unforgettable walking-out-of-my-black-half-slip incident here, of which I'll copy a sample for y'all:

Yes. I had publicly lost my undergarment in front of several of the priests of our diocese as well as other upstanding Catholic honorees and their families.

Shudder.

Yesterday, I realized that it was time to just bite the bullet and get going on this last and least favorite task before the wedding. Dang. I just couldn't put it off any longer.

Being the spiritually-oriented person that I am, I took a solemn moment in prayer as I began my underwear quest. It kind of went like this:


Please, God.......let me keep my underthings securely attached to my person at this wedding. Please? Isn't it enough that I already have to worry about getting so fatigued that I will say and do weirdo things? And will probably get hopelessly lost in the cathedral? And without a doubt will soak down my entire body and hairdo with perspiration after somebody has to retrieve me from one of the confessionals, which I probably will have mistaken for a very different place? And in all likelihood will forget the names of my brothers and sisters and their children? And the names of MY children? So that I can't introduce them to the new in-laws? Who's names I will certainly forget as well? DO I HAVE TO LOSE MY UNDERWEAR, TOO? Really, God? Really?? ......What's that, God? .....You think that I should actually be praying for this beautiful young couple and their life together and blah blah blah blah blah....::blink::....sorry. Wasn't paying attention there.........Well, duh, God.  Haven't you been listening to me every night since he slipped the ring on her finger? Although I suppose you're right. Sorry about the duh thing, God. 

Once my conversation with God had finished, I actually put my body into Goldie and off we went to find the perfect goof-proof undergarment.

I'll spare y'all the gruesome details; suffice to say that I had a hard time explaining to the saleslady in a certain pricey department store exactly what sort of undergarment I wanted.

I want to wear my own bra. I don't need a slip because my dress already has one SECURELY ATTACHED. But I want something to de-blob my torso and waistline. And it can't end right at the waist otherwise everything just pooches out right there. But I don't want those long-leg things....shudder. I tried getting into one of them once and I didn't think I'd ever escape. And...

"Oh!" the saleslady piped up. Perkily.

"You want a romper!"

Come again?

"A ROMPER!"

She perkily made her way over to a garment rack and snagged an item from which was hanging this tag, and waved it in front of my face. Perkily. Her perkiness wasn't decreasing my decidedly un-perky attitude.

Are you kidding me? If someone had told me that I needed a romper, this is NOT what I would have conjured up in my mind. And, no, I'm not sharing with y'all what I would have been thinking.

Has anyone else in the whole world seen an undergarment labeled as a ROMPER? Honestly. The thing is just a high waisted girdle with suspenders attached.

So I tried on the ROMPER. And I'm here to tell you: this girl won't be doing any ROMPING with this thing on. There's boning up the sides and torture-grade spandex covering every inch. I'll be lucky if I can breathe, never mind being able to romp. Or frolic, or frisk about, or anything else. However, it seems as though there is absolutely no chance that this ROMPER will fall off any part of my body, which is the most important thing of all. Breathing? Frisking about? Overrated. Having all of your clothing stay firmly attached in all of it's intended locations? Brilliant!

I just know it. This overpriced romper is the answer to all of my prayers. Right, God? Right? .....God?

I'll keep y'all posted. Maybe I should superglue my shoes on.

I Hate Buttons

Now that we've had some nice weather, my hammock swing is in place, and Mags and Lulu and I spend lots of time there.

Comfy. For all three of us.

The other day, I was wearing pants on which the back pocket had a dumb stupid button. It was one of those metal buttons that have a shaft which makes them protrude a bit. After the girls and I finished our swing session, I slid out of the hammock when.......drat. I was stuck. The dumb stupid button had caught in one of the hammock strings, which was then pulled out by a good foot or so.

After untangling my backside from the swing, I tried to manipulate the string back into the nice fishnet pattern that it originally lived in. After a bit, I thought I had things fixed up rather nicely. It looked normal......kind of.......

But when I sat down for a trial swing, I realized that even though I had rearranged the strings, the swing was NOT perfectly comfy as it had been before. I could feel a tight band of strings across my hinder which was definitely distracting, so I dumped the schnauzers off my lap once again and began pulling and coaxing strings anew.

It's a strange puzzle. The strings are completely intact: nothing broken, no loose ends. They're all loosely woven just as they should be except for the spot where my butt button did it's damage. I hopped back into the swing yet again, this time stretching out in the swing in every configuration that I could think of in the hopes that all my gyrations would even out the weave somehow.

I'm so glad that my neighbor Naomi wasn't out on her deck to witness this. Wasn't particularly pretty or easily explained.

But it's still not right. There's a stretch of tight strings in the worst possible spot.

See?

Wah!! I love my hammock swing! I need my hammock swing! I can't live without my hammock swing!! I want it to be perfectly comfortable like it used to be!!!

Sniff......sniff......OK. Tantrum over.

Any ideas?