Spooky

My two boys in the Best. Halloween. Masks. Ever. 

Ahhh. Halloween.....

You didn't think that I would let a holiday as fun as this one go by without comment, did you? Well, of course not.

We've started giving out small toys as treats ever since John and I discovered that we were eating more candy than we doled out to the trick-or-treaters........and we get at 200 to sometimes 300 kids each Halloween, depending on the weather. That's a lot of candy, even for BICJ at her hungriest.

I think this year we have some extra good stuff. And the best thing about giving toys instead of candy? (Besides not gaining 15 pounds in one weekend?) Any leftover toys are tossed into the Halloween box and saved for next year. Brilliant.

OK, everyone be patient. Choose just one. Littlest kids first.

Here's a treat for YOU - I love the Monster Mash song - so here's a YouTube version with a whole new twist. Enjoy. Mwahahahaha.......

Happy Halloween!

Reach Out

Image found here. 

Jennifer Pettit, author of Understanding Invisible Illnesses, has penned quite a post, entitled A Tree May Grow in Brooklyn But Friendships Grow in Philly.

In it, she describes our very enjoyable meeting in Philadelphia, but more importantly, she describes with exceptional clarity what happens when people in similar circumstances but different locations have a chance to share their experiences with each other:

.....the internet has BLOGS - which are by and about LIVE people, who exist NOW, whose lives are ongoing stories with twists to come so great no human author could have fit it all into a 'book'.  Bloggers are my PEERS.  They tell me their stories...and sometimes listen to mine...and then something never before seen in the history of the written word happens - our stories morph.  They piggy-back off each other, and eventually become intertwined.  There's truth in the line from "Wicked": "Because I knew you, I have been changed for good".  Whether we support, anger, respect, or despise each other, we have had an impact on one another and anyone else who may have stumbled into our "storylines".

Bravo, and well said, Jen.

Dealing successfully with chronic illness is all about healthy and supportive connections - a merging of "storylines" into a conversation that is mutually beneficial. If you are dealing with a chronic illness, find a place to share your story, be it here, or UII, or any of the many other excellent blogs or forums. Everyone has a different perspective or experience with their illness, and everyone can benefit when we reach out to each other.

So get going. Reach out to another sjoggie. We'll all be better for your efforts.

Out of the Picture

Way back when I was first diagnosed with Sjogren's syndrome and I was feeing really crummy and frightened in response to the enormous changes in my life, John gave me a camera.

I had always enjoyed taking pictures but never considered photography one of my skills or passions. Little did I know that this birthday gift would become a valuable tool - and a friend - in making the difficult adjustments required in a chronic illness. It was wonderful to be able to replace some of my hobbies taken away by Sjogren's syndrome with a new interest in photography. Not only did my camera bring an opportunity to learn something new, it also provided me with a way to continue to feel like I was actively participating in activities that I thought were no longer possible. Yes, I was sitting on the sidelines and in the shade - but I could take the pictures, by golly. And so I did - ad nauseum.

My Canon was a SLR digital camera capable of far more than I could have imagined. Before long I became a real nuisance as I documented all aspects of our lives in full-color high-resolution digital photos. Holidays! Birthdays! Friends picking their noses! Dogs scratching their hindquarters!

Like most of my favorite possessions, such as my little car Goldie and my piano Bessie, I eventually gave my camera a name and discovered it's personality traits. Which provides a handy opportunity here to show off a word that I only recently discovered: anthropomorphism - the attribution of human characteristics to animals or non-living things.

Oooooo. Ahhhhh. Julia becomes polysyllabic. Yes! She CAN be taught!

The creative name that I gave my camera? Canon. Yep. That's the best that I could do. But that's who he has been since I first slipped the neck strap over my head and began clicking away. Canon was a boy, was non-judgmental, reliable, and very forgiving of my amateur photography mistakes. He enjoyed riding in Goldie tucked inside his bright yellow camera bag with the zipper half-open to facilitate a quick retrieval.

When Canon recently met his demise, I was truly sorrowful.

It all happened gradually, as often does with elderly cameras......a sensor fault here, an error message there, finally the loss of communication between the flash and the camera body, a chipped lens connection, and then........the Big One. Error 99. Doom. After all sorts of diagnostic machinations, the good folks on the customer service line at Canon delivered the bad news: For a seven year old camera with multiple problems, the cost of repair would exceed the cost of a new camera by a significant amount.

I looked with disbelief at my pal who had held my hand through so many experiences over the past seven years. Irreparably broken? Really? It couldn't be.

I'll meet my new camera in a few days, and parts of Canon will live on with his successor - telephoto lens, macro lens, filters, and tripods. But it won't be the same.

Goodbye, old friend.

Sjogren's Syndrome and Headaches

Image found here. 

I was browsing some of the posts over at the Sjogren's World forums today, and noticed an interesting question. One of the readers had commented that she had frequent headaches and wondered if they could be related to Sjogren's syndrome or autoimmune disease. There were several responses by other sjoggies who agreed that frequent headaches were a problem for them. I hadn't considered this symptom in Sjogren's before since luckily for me, it hasn't been a recurring issue. Well, except on those rare mornings that follow an evening which includes more than one mango margarita.

I did a literature search and was surprised to see that yes, indeed - headache in Sjogren's syndrome is a common symptom confirmed by several studies that looked at prevalence of headaches specifically related to Sjogren's syndrome. Headache is discussed in this very thorough article outlining neurological aspects of Sjogren's syndrome by by Stewart J. Tepper M.D.: "Headache can occur in Sjögren's, and in a study by Dr. Gibson in London, who looked at thirty-five patients with primary Sjögren's in his Sjögren's clinic, about forty-six percent (46%) met the International Headache Society classification criteria for migraine. It may be that the headaches are a manifestation of the Sjogren's."

Although several studies confirm the increased incidence of headache and migraines in Ss, it appears that the cause of the headaches can be varied. This study speculates that "The high prevalence of migraine in pSS patients might be explained by a vascular headache triggered by immuno-mediated disease activity without an obvious clinic or laboratory marker."

Another study, published in the Annal of Rheumatic Diseases, also showed a significant increase in prevalence of migraine and headache in patients with primary Sjogren's syndrome. The authors comment that causes could include stress and emotional upheavals that accompany the disease but also may be due to underlying disease processes similar to the headaches commonly associated with Lupus and other connective tissue disorders.

Other sources suggest that some headaches associated with Sjogren's syndrome may be the result of frequent sinus infections due to increased viscosity of mucous secretions.

Treatment of these headaches depend on underlying causes and severity of the pain, so talk to your doctor about treatment options for your headache.

My discussion would probably go something like this: So, doctor - I'm thinking that my headaches which follow three mango margaritas must definitely be related to Sjogren's syndrome, right? Right? Doctor? Whaddya mean, they're mango margarita related?!

Please. He must not have read the latest scientific literature. Pfft.

WEGO Health and Me

Image found on Wikimedia

Well.

After two consecutive days of sleep......ahhhhh.....which was wonderful......I think my brain cells are finally waking up. So I finally feel able to recount with a reasonable amount of accuracy my experience in recording the dry mouth webinar for WEGO health.

First of all, I'd like to express my appreciation to WEGO for offering me this opportunity. I'm still in some state of disbelief that I was asked to participate - What? People actually read my stuff?! - but am tickled pink that they did. And this group of folks actually have been reading Reasonably Well. What a hoot to listen to their comments and answer questions like, "So did you REALLY practice in your closet?" Um, yes, Tam, I actually did. I had to admit with a laugh that everything that I write is unfortunately true......yep, all those strange Julia-isms actually exist.  

When Terese and I arrived at the filming session we were greeted warmly by everyone. I was nervous beyond belief, but was immediately put at ease when Neil put his arm around my shoulder and said, "I'm going to be your very best friend today," and went on to demonstrate the teleprompter. He was right. He AND that teleprompter were invaluable. WEGO's Melissa had thoughtfully provided a case of water among other essentials - she knew what a sjoggie would need - and was quick to offer encouragement, support, lots of smiles, and the offer to help out in whatever way she could.

We began filming under the calm and confident direction of Brian, and the hours flew by. I have to say everyone was extremely patient with a newbie such as myself, particularly when I actually burped into the microphone......oops. Yes, burped. I actually downed a big-gulp size soda minutes before filming. Oh, brother.

Terese quickly ingratiated herself with the crew and before long was pressed into service as an assistant grip. She held monitors and handed water bottles with the very best of them. She was quick to hand Kleenex when the hot lights made me perspire and pointed out hair and scarf and makeup issues. Hm. I don't recall seeing any of her interpretive dance, however. Even though it was discussed repeatedly....

When Dr. V, arrived, things moved along quickly. Adrenaline, caffeine, and Provigil kept me going strong for much of the session but as the last few hours wore on, I could feel my energy wane and my voice fade. Luckily by that point, I had few on-camera responsibilities, so I could begin to relax. Before I knew it, I actually heard Brian say, "That's a wrap!" and I began to melt into my chair.

Wow. After all of the discussion, planning, script revisions, angst and excitement, it was over. We hugged all around and headed back to our hotel. Terese ordered up some excellent celebratory mango margaritas and we relaxed and shared our perspectives on the big event.

So that's my story as my first - and probably last - experience in film. Should I ever be granted another opportunity, I would be able to use a few things that I have learned during this go-around: First - NO SODA POP CONSUMED BEFORE SHOOT. Geez. Secondly: Gas X. Definitely. Third: I would attempt to relax and enjoy the experience more. Although this may be a tall order. And fourth: Don't forget to bring along Terese. Couldn't have done it without her.

If I haven't mentioned it before, I want to recommend a visit to WEGO health, which is an extensive collection of health activists who have a desire to share their experiences with others on an amazing range of health topics. Check it out.

Best Wrapping Ever

I'm still catching up on my sleep after my exciting week.

In the meantime, enjoy this video: Useful since the holidays are quickly approaching, after all..

Take Me Out To The Ball Game

You can buy your very own Phillies coffee table book here. 

I had so many adventures in Philadelphia! I'm too tired tonight to relate them all, but I just have to comment on one of my favorites. Disregard any misspelled words or grammar errors here - Maggie is draped over my lap and Lulu is trying to sit on my head as I'm typing this while plopped on the couch. I guess the schnauzer sisters missed me while I was gone......

I have enjoyed corresponding with sjoggie Jenny Pettit, author of UII - Understanding Invisible Illnesses, for a few years now. She is an intelligent, articulate and enthusiastic young woman who juggles her significant autoimmune disease, career, marriage, volunteer work at her church, advocacy campaign for people with invisible illness in her workplace, and in her spare time? Writes a blog.

Yes, she is an over-achiever.

When I realized that I was traveling to Philly for the webinar project, AND that Jenny lives in Philadelphia, I was hopeful that we could arrange to meet in person. And we did! Jenny and her husband very generously offered to pick Terese and I up at our hotel.

It was easy to identify the attractive young lady that walked into our hotel lobby - we hugged, and began yakking immediately. It was great - after all of our message exchanges and reading each other's blogs, I felt as though we had known each other for years. The four of us spent the entire evening together and what a gift that time was.

Yes, we had many laughs and stories to exchange, but what was special for me was the opportunity to spend time with someone who, although is disgustingly much younger and far more attractive than I, actually shares many of my same circumstances.

And by the way? Jenny is FAR too modest. She claims not to be photogenic but is actually very lovely. (So there, Missy!) Just ask Terese or her husband.

We sjoggies know that any opportunity to spend time together is a rare opportunity. But to spend time with another sjoggie who also writes a blog about her experiences is even rarer. And is also a rabid baseball fan! We had a grand time comparing notes over a delicious dinner while watching a Phillies baseball game. Since my Seattle Mariners were not even close to being in the running for the World Series, it was easy to get caught up in the Phillies mania for the week that we were here. And I think that it's just a shame that they lost in such a close game......

So thanks a million, Jen, for taking time out of your busy busy life to spend an evening with me. This old sjoggie appreciates it far more than you can know.

And I'll betcha that the Phillies will win the Series next year.

You can read more from Jenny Pettit on her blog at UII.

Heading Home

I'm on the road again today.

It was another eventful Julia/Terese excursion! Woo!

I'll post more after I've spent some serious time catching up on those zzzzzzzzs.

See you tomorrow.

And More Pictures.....

Day Three of Terese and Julia's Great Adventure:

Today, we discovered TASTYKAKES!! Where have you been for my whole life, you delectable little morsels?? I wonder how many of these little gems I can cram in my suitcase.....

We took a drive through the Amish countryside.

And most importantly, we visited Gettysburg, which was a place that defies description but evokes powerful emotions.....

Philly Photos

The film shoot here in Philadelphia went well, I think. But I'm going to reserve my opinion until I see the finished project.  At any rate, it was fascinating to see how much work goes into producing a simple 15 minute segment. I'll write more about it after I return home later this week.

Right now I'm spending my energy stores very carefully. Terese and I have been exploring the city and it's been great fun. I have to admit that Terese has seen considerably more of the historical sites than I have since I've grudgingly scheduled some serious downtime. But those naps have been invaluable - last night I actually mustered up enough energy to take a walking tour on a beautiful full-moonlit night to visit the haunted parts of the city. Ooooooo.

Of course, I've indulged in my first Philly cheesesteak sandwich, and my, oh, my.........I'm thinking that I need to do further research on the subject by trying the fabulous sandwiches from various restaurants.

I'll post some pics from the last few days adventures. Anyone recognize these landmarks?

"That's a wrap!"

Image found here. 

Greetings from Philadelphia!  This is Julia's friend, Terese, and I'm guest writing the blog today because Julia is semi-comatose on the couch slurping a blended mango margarita.  After today, she deserves it!

Image found here. 

While I was strolling around historic Philadelphia eating tastykakes, Philly cheesesteaks, and ice cream at the Franklin Fountain, Julia was preparing for her film star debut as Health Care Advocate extrodinare.  Seriously, she spent five hours filming and recording a webinar about the symptoms of dry mouth and possible solutions.  This webinar also involved a well known Sjogrens specialist, cameramen, script writers, TelePrompTers and a cast of thousands.  Ok, I lied about that last part.  Who knew making a 'film' could be so taxing? The lights, the microphones, the make-up, repeating each line a million times, "this time with more inflection...ok that was perfect, now give me 10% more...."

I'm sure Julia will give you more details about when this webinar will be available for viewing.  But the reviews are in:  she was marvelous, simply marvelous.  Special thanks to the film crew hosts who made us feel so welcome and appreciated.  But next time you need to film....call Meryl Streep.

More To Come Later.......

Alert the local authorities.

Terese and Julia have arrived in Philadelphia. Wonder if the city knows what it's in for?

Don't Miss This Performance

Well. The project date is fast approaching.

I don't want to name names here..........but........SOME of us who are about to embark upon this trip are.....shall we say.....SLACKING in their preparedness. I really would rather not be specific about whom I am speaking here, so to maintain anonymity, I will simply give her initials which begin with T and end with ERESE.

I tactfully made enquiries today about her progress with her biggest assignment: the interpretive dance/mime translation of the script, performed vigorously and WITH FEELING directly in my line of vision during filming. I was shocked - yes, shocked at her response. Which was, "I still need to work on my costume. You can only do so much with duct tape, for goodness sake."

What? Her costume isn't even done? Everyone panic! Ok. Breathe, Julia. Just breathe.

I have yet to see even a teensy bit of the dance/patomime - not even through the first paragraph of the script. I'm thinking that she needs an opportunity to really give this thing a realistic practice session. I'm thinking that as we board our airplane and when the flight attendant begins with the safety instructions/seat belt/oxygen mask speech, T. should just hop up and launch into her interpretive dance instead. Everyone in the entire plane cabin, (well, except those elitist people who insist on sitting in first class but then they'll just have to miss the show, nyeah) can guess along with me what she's trying to convey.

Wouldn't that be much more interesting? We all know what's on those safety cards. Heard it a million times. Honestly. Wouldn't you willingly pay the price of a plane ticket to see an interpretive dance about Sjogren's syndrome - related dry mouth?

And actually, even though the initial purpose of this off - screen interpretative dance was to simply provide visual cues to help me remember my lines, on second thought.......you know, T. is much better looking than I am.....she's in much better shape than I am....maybe we could add another whole dimension to this webinar, come to think of it. I think we should move her from behind the camera to front and center stage. Oh, yeah! That way, who cares if I've goobered down my blouse yet again? Or if my hair is standing on end? We could plant her duct-taped self directly in front of me. I could happily live with that!

Now THAT would be real entertainment. I'm sure the WEGO producers would agree.

Sjogren's Syndrome and Dry Mouth

Image found on NYC Dentist Blog.

So - my much anticipated and angst-ed taping of the WEGO webinar on Sjogren's Syndrome and dry mouth takes place this week. I've been reviewing and re-reviewing the script. Thank heavens that I can do this from the privacy of my generously sized closet, where hopefully nobody can hear me blabbering while pulling on various items of clothing and agonizing in front of the mirror then tossing everything in a giant heap of sleeves and clothes hangers and pants legs. My closet is so completely trashed. Ah, well.....

As I have been reviewing the materials for the webinar, which is very good information btw, it occurred to me that even though I have posted before about saliva and dry mouth, it's probably a good time to bring up the subject again, especially since it's been in the forefront of my mind lately.

My previous post, Sjogren's vs Saliva, is an overview of Sjogren's related dry mouth. You can read it here, and it's also listed among the other informational and non-silly (for the most part) posts on my sidebar. The material was taken from the excellent book, The New Sjogren's Syndrome Handbook edited by Steven Carsons, MD, and Elaine K. Harris.

The diminished capacity of special glands to produce saliva has potential for major issues for overall health, as demonstrated by the information in this chart:

Image found here. 

As you can see above, saliva affects many functions of the body, including the ability to taste. The sense of taste, so vitally important when facing a slab or chocolate cake or a tall cool mango margarita, is facilitated by saliva components water and a zinc protein called gustin, along with normally functioning taste buds. 

A great discussion regarding saliva and taste was featured in this month's Moisture Seeker newsletter entitled The "Best Of" published by the Sjogren's Syndrome Foundation. (It's easy to become a SSF member. Their website has a plethora of really good resources, facilitates valuable autoimmune research, and you can conveniently join online). Here's the taste and saliva question from among the many excellent questions and answers included in this amazing issue and it's response by Phillip C. Fox, DDS:

Q: Without saliva, almost everything I eat tastes bland. Is there a way I can regain some of my sense of taste so that I can enjoy food the way I used to before I got Sjogren's? 

A: Research has shown that Sjogren's syndrome patients have an increased incidence of taste disorders - both diminished taste (hypogeusia), loss of taste (ageusia), and altered or abnormal taste (dysgeusia). A great deal of the problem comes from a deficient of saliva. Flavors in food need to be in solution to be fully tasted; that is one of the important functions of saliva. Saliva also helps protect the mucous and oral structures, including the taste buds. Finally, saliva helps carry food and flavors across the tongue and the taste buds where it can be tasted. Without adequate saliva, there are many ways that taste can suffer. 

A full evaluation is recommended since it has been reported that taste may also be affected by medications and by a number of medical conditions. Clinical examination and diagnostic procedures may identify other potential causes for taste complaints such as nasal polyps, viral infection, oral candidiasis, neoplasia, malnutrition, metabolic disturbances, or chemical and physical trauma. Also, complaints of taste loss need to be differentiated from alterations in flavor perception, which is primarily related to your sense of smell.

There is no specific treatment for the taste disorders found in Sjogren's syndrome. However, using liquids to wet the food in your mouth may help increase the taste. You can also try increasing the seasoning on foods and see if it improves the taste. However, be careful not to use excessive amounts of sugar or salt which can have negative health consequences. Since a reduction in salivary flow may concentrate electrolytes in the saliva, resulting in a salty or metallic taste, drinking plenty of fluids while eating may help reduce dysgeusia.

Although it is controversial, some authors recommend zinc supplements in cases of taste problems. Using an over-the-counter preparation like Z-BEC, one tablet per day, will assure that you are receiving adequate amounts of zinc.  

Want to read more from the "BEST OF" issue of the Moisture Seekers? Become a Sjogren's Syndrome Foundation member! Each issue is available online to all registered members.

They Don't Have Sjogren's Syndrome

Since the author is suffering from a significant case of college football overload, the previously scheduled and highly technical post has been delayed. In it's place, we present a mindless yet entertaining video this Sunday morning. Enjoy.

Everyone Has Their Limits

Image found here.

As Terese and I rambled through the state of Vermont last week, we had the opportunity to enjoy so many things: time with Terese's family, awesome fall colors, and interesting historical remains of places and events.

We also had several chances to do some serious people-watching. Great fun.

My favorite observation took place in a cozy restaurant, or as we midwesterners used to call a supper club. Here in the Pacific northwest, folks just don't seem to use that term, but back where I grew up, a supper club was a folksy restaurant usually situated somewhere near a lake or other scenic area, featured steaks, iceberg lettuce drizzled with thousand island dressing, and always a Friday night fish fry. And had a fully stocked bar and employed a bartender that knew how to whip up an excellent brandy old fashioned - sweet.

But I digress.

So we were finishing up our tasty dinner just as a foursome was seated at the table next to ours. They were two couples and all seemed to be in their early seventies or so. As they settled into their chairs, a lively conversation ensued which was quite interesting.

And before anyone accuses me of eavesdropping, I want to point out here that everyone in the large restaurant could have easily heard exactly what Terese and I heard. I'm thinking that there was a serious need for hearing aids for all four of these folks. Just sayin'.

So the most vocal of the group was a .... um..... pleasantly plump lady. She leaned forward in her chair and planted her elbows firmly in front of her as she made the observation, "Well. Our first whole day of vacation and we haven't killed each other yet!"

The others chuckled and the gentlemen pushed their chairs away from the table as they headed toward the salad bar.

She directed her next comments to the other remaining lady, "So I wonder how it's going to go with all of us sharing one hotel room."

Terese and I exchanged grins. This was going to be good. We just knew it. And sure enough - here it came:

Pleasantly Plump Lady proclaimed: "I just want to say right now, that there's a few rules here. I don't mind snoring. I don't mind if everybody has to get up to go to the potty a million times."

Dramatic pause.

"But I don't do SINGING!"

We looked at each other, giggling. Did we hear that right? Yep, we did.

"NO SINGING! That's where I draw the line!"

We collapsed onto the table, snorting into our napkins with laughter.

Singing? Singing? Can you just imagine this foursome in a Holiday Inn somewhere - snoring loudly and making frequent trips to the bathroom - and in the middle of the night one of them begins singing with gusto - Swanee River perhaps??

And then a brawl erupts as Pleasantly Plump Lady begins slugging?

Ahhh. People are so entertaining. Life is so good.

Want to read more about REAL midwestern-style brandy old fashioneds? Dive into this really great post found on Off The Presses. Gotta get me some Korbel and bitters......ooo.....and maraschino cherries....

Share Your Sjoggie Story

Awhile back, I received a letter from a fellow sjoggie that was struggling with a choice that all of us face during the course of our disease: To tell? Or not to tell others about my health issues. And if I'm going to tell - how much? And to whom? And when? And how?

I can't even pretend to know the answers to these questions. In response to her letter, I simply described my bumbling route to disclosure. But after I hit the send button, I sat back and wondered how each of our stories share similarities and differences.

How did you decide who and when and how much to tell others about your autoimmune disease? Did these revelations strengthen your relationships or cause them to fade away?

Did a frank discussion about Sjogren's syndrome with your employer lead to an increased sense of security in your job, or did it lead to your resignation?

I'd love to hear your stories. And I think many readers would appreciate reading them too, especially those that are early in their diagnosis and trying to find their own path.

C'mon. Share. We would all benefit from your stories.

Travel Duties

Well.

I'm home relatively unscathed from a week of traveling with Terese to the East coast, and now am planning yet another upcoming adventure next week in Philadelphia to film a dry mouth webinar for Wego Health.

Lucky for me, Terese has agreed to accompany me yet again, in spite of the fact that I have briefed her on her duties during said trip:

• First and foremost, she is to be my STUPID shield. Meaning she's supposed to protect me from myself when travel brain fog sets in and my eyes glaze over, I begin to giggle, sweat, wander, and mumble. (Good luck with that one, buddy ol' pal.) 

• Secondly, she is responsible to keep BICJ (Bratty Inner Child Julia) on a tight leash for the duration of the trip. This includes avoiding Philly steak sandwich, fudge, ice cream, and other diet-devastating food inhalation before filming commences. Additional BICJ behaviors to curtail may involve slugging down mango margaritas or any other alcoholic beverages immediately before said film shoot. 

• Thirdly, Terese is to closely monitor me during the actual filming session with close attention paid to my tendency to goober food or beverages directly down the front of my clothing. This may be her most difficult challenge. I had significant issues with this in Vermont, but then I hadn't briefed her on her responsibilities at that point. I didn't hold it against her. See what a good friend I am? 

• And speaking of the filming, we've already discussed the necessity of her doing an interpretive dance/mime activity directly in my line of vision when the camera is rolling which will allow me to avoid memorizing the script. Handy. I can't wait to see what her interpretation of the words cotton mouth will translate into. Oooo - and digestive problems. 

• And finally, Terese will be responsible to help me avoid a re-occurence of my latest travel-related injury: camera arm. Yes, I actually have aching muscles in my shoulders and upper arms from TAKING 250 PICTURES OF LEAVES in Vermont. Not kidding here - I'm still popping ibuprofen. 

Wouldn't anyone jump at an opportunity to follow a confused and goobering sjoggie around Philadelphia?

No? Really??

Well, for goodness sakes, don't share your opinion with Terese. At least until we get back.

Ooooo..... Ahhhhh.......

Vermont was beautiful. Here's the evidence. Enjoy.

Coming Home.......

Heading home after a GREAT week in Vermont. Will post more tomorrow.

Arrived!

After my first cup of coffee for the day, I'm awake enough to enjoy the beautiful surroundings here. We're staying in a small town in southern Vermont amid beautiful trees and rolling hills. Sorry, no pics to upload yet. I'll unpack the Canon maybe after my SECOND cuppa.

Enjoy your day. I'm sure that I will enjoy mine.

On The Road Again.....

I love my trusty old Canon. Image found here. 

My camera and I are heading out to Vermont today, and I'm not sure about internet availability where we're staying, so posting this week will probably be sparse.

I'll upload pictures and comments when I can. In the meantime, everyone behave themselves.

Don't make me come over there.

Lights, Camera, Action!

Image found here. 

For the past few days, whenever I'm alone in the house or think that nobody is watching, I find myself standing in front of any mirror or any reflective surface while pasting a goofy smile on my face and saying, "Hello! I'm Julia, and I'm a health activist......oh, geez I sound stupid....." *pounds forehead with palm of hands*

So why am I repeating this unusual exercise?

A few months ago, I agreed to be part of a project by WEGO health and one of their sponsors. The goal of this project is to produce an online resource for patients with dry mouth and dry eye. I'll post the web address when it comes online. Maybe. If I don't look and sound really really stupid.

So far it's been an interesting project, having participated in several telephone conference type meetings discussing information, script etc etc etc. I'm excited at the prospect of heading over to Philadelphia to see it all come together.

Terese has agreed to come along to do two things: first, to help me maneuver through a new airport and city should brain fog render me completely useless, and secondly, to try to keep Bratty Inner Child Julia contained. Several reliable sources have informed me of the delicious cheese steak and ice cream that is everywhere in Philly. Mmmmmm.... BICJ is already frothing at the mouth. Steady, girl.

However.

The date to actually film this webinar is approaching far too quickly, and since I have (foolishly) agreed to appear on-camera, a bit of panic is setting in.

Hm. I have about two weeks. I should be able to diet my way down at least five sizes by then, dontcha think? And have a face-lift? Ooo - and liposuction? I wonder if I should dye my hair......think I'd look better on camera as a blonde?

This will be interesting. I'll keep y'all posted.

In the meantime, Vermont awaits! Terese and I leave on our Leaf Tour tomorrow! It's a good thing that I'm feeling so much better. I've got a busy month ahead of me. I'm trying to focus on planning specific rest times and pacing myself so that hopefully I won't crash and burn.

I'm bringing my trusty Cannon Rebel along, and will post photos when I can.

Oh, Mr. DeMille? I'm ready for my closeup...........wait, maybe not.

T-Cell Research

Awesome T cell image found here. 

Medical News Today recently published this very encouraging article regarding a study that examines cellular defects in autoimmune diseases and cancer: 

"For decades, autoimmune diseases have been treated by reducing overall immune response. That's been effective in extending life spans, but has been hard on the quality of life for many of those patients," said Hong Jiang, M.D. Ph.D., a faculty member of the Division of Rheumatology, in the Department of Medicine at Columbia University Medical Center, and the leading scientist of the study and corresponding author of the paper. "Now that we understand the specific mechanism of how regulatory T cells discriminate between 'self' and 'non-self,' and the cellular/molecular defect that makes that process go awry, we hope to develop new type of therapies that specifically target the defect in patients without damaging their normal immune functions." 

.........Current therapies for treating autoimmune disease and controlling rejection of transplants result in nonspecific suppression of normal function of the immune system. In contrast to these existing approaches (which systemically suppress the immune system), therapies based on this new research are designed to selectively suppress immune responses to self-antigens without damaging the body's normal anti-infection and anti-tumor responses.

You can read more about this exciting study here. 

It's wonderful to see these important studies being conducted into the mechanism of autoimmune disease. It seems as though the hitch in this giddyup unfortunately comes in when scientists take this information to try to "develop those new types of therapies that specifically target the defect in patients without damaging their normal immune functions". 

A tall order, indeed. Go get 'em, Dr. Jaing. 

Clean Up On Health and Wellness Aisle, Please

The city of Portland has a plethora of cool places. Like the Oregon Museum of Science and Industry, and the Japanese Garden, and Washington Park. We also can boast the fact that Powell's, the largest independent bookstore in the world, resides here. This amazing store literally takes up an entire block of downtown Portland.

I visited Powell's the other day as a treat for myself after enduring my pulmonary function studies. I should have probably delayed my visit until another day when I was not tired from the whole huff and puff experience, but then I always have had issues with instant gratification.

So I strolled around the meandering ancient brick building with pleasure but also a quickly depleting energy reserve. And as I have mentioned previously, when I am tired, I am also cranky and stupid. Not a really attractive combination of traits, but there it is.

By the time I had made it to the top story of the store, (and it's hard to tell what number of stories the store has since some are halfway between others), to the wellness and health area, I needed to pull up a stool and plop down in front of the bookshelves. Which were surprisingly sparse, come to think of it. I would have guessed that a store that encompassed a city block would contain at least an acre or two of books on such an important topic.

At any rate, there I sat sweating and pondering the fact that there was one - just one - book on autoimmune disease sitting by it's little lonesome self surrounded by books about chronic fatigue. I stood up rather disappointed. Then looked with surprise at the pile of books prominently displayed directly above the chronic fatigue books. This is what I saw:

Really.

I picked up the book and paged through it, becoming crankier and stupider by the minute. Yes, Wendy Wasserstein has written some wickedly funny satire, and I'm sure that had I seen this book displayed anywhere else in the store, I would have been mildly entertained.

But - really? Really? IN THE WELLNESS SECTION RIGHT OVER THE CHRONIC FATIGUE BOOKS??

Sorry. I didn't mean to shout.

As I mentioned, I was plenty cranky at the point and stupid enough that I really didn't care if I made a scene. In my favorite bookstore.

Meanwhile, a skinny young man with Powell's credentials hanging prominently from a lanyard around his neck had the bad timing to walk past me. I snagged his elbow and spun the astonished clerk around to face the stack of offending books.

"Do you see this??" I snarled.

He looked with panic from me, to the books, and back to me again, and swallowed nervously. "Um, Ma'am?"

I shoved my nose within two inches of his pimply face. "Let me make something clear. I find it extremely offensive that a book about SLOTH should be displayed prominently above books about chronic fatigue. A slothful person has a choice how they spend their energy. Chronically ill people DON'T. If someone thought they were being clever and funny, they were wrong. WRONG!!"

I noticed at this point that patrons from several aisles over were craning their necks to see what the ruckus was about, but I couldn't have cared less. I glared at this poor kid as he recovered from his shock and finally grasped what I was trying to say. At the top of my lungs. While sweating buckets from walking up several fights of stairs.

His face turned a bright red as he beat a hasty retreat to the safety of his computer station and began to punch telephone buttons frantically.

"We need a manager to health and wellness. NOW. What? I don't care if he's busy. What? Well put him on the phone, then. Yes, NOW!!...........Hello, sir. Yes, I......I know you're occupied, but I have, um, a very upset customer here.........well, yessir, I did talk to her......(NO YOU DIDN'T, YOU LITTLE SNIVELING WEASEL, I thought. Hm. I hope  I was thinking this instead of loudly vocalizing it, come to think of it......)

He cringed behind his computer monitor and timidly offered me the receiver. "He wants to talk to you."

I snatched the phone in time to hear a carefully calm voice say, "Hello! I'm Doug. Can I help you?"

"Well, hello, DOUG, my name is Julia."

Out of the corner of my eye I could see the pimply kid scurry over to the offending books and begin to scoop them up as fast as he could. He scuttled around the nearest book shelf carrying a precariously tall stack of Sloth books.

I repeated my earlier comments at the same approximate decibel range. By this time a small crowd of patrons had gathered.

"Look. This is my favorite book store. I have been coming here for years. I know your staff is better than this. I know you can do better." I finally paused for breath.

"Ma'am. I'm sure that this was not intentional. Of course it was completely inappropriate that those books should have been placed in this department. So sorry......." his voice trailed off as I placed the receiver back in the cradle. Not very gently, I'm afeared.

By now, I had blown off a considerable amount of steam. I sat back down on my stool, my cranky energy completely spent. The clerk poked his head out from his hiding place. "Are you OK, Ma'am? I really am sorry that you're offended."

I felt like a helium balloon that had been popped. And slightly embarrassed at my outburst.

"Oh. Well, thanks for moving the books. I appreciate that." I slung my purse over my shoulder and slowly lumbered to my feet. As I began walking toward the stairs, a man approximately my age followed me and tapped my shoulder. I turned around in surprise.

"I just want to thank you for bringing that to their attention. I noticed the same thing but was kind of afraid to say anything. I take lots of medications for a mental disorder and they make me so zonked out that some days I can't even get out of bed." He smiled and walked quietly away.

My embarrassment disappeared. Yeeeeaaaah. Actually, and probably unfortunately, I'm accustomed to making a scene periodically.

I'm just glad that occasionally others can benefit from my crankiness. So there.

Powell's images found on The Insatiable Reader.

Now Take A Big Breath And..........

So I had my pulmonary function tests today. Yep. Sat in what looked to me like a glass telephone booth for an hour or more and puffed away like crazy.

Exactly like this! Image found here. 

The technician coached me with every breath, and if I wouldn't have had my mouth stuffed with plastic and my nose pinched shut, I would have spent the whole time giggling. She jumped and gestured and waved and enthusiastically pantomimed every instruction to me. I simply had no choice but to huff and puff. Just call me the big bad wolf-ette.

When the test was completed and we both were recuperating, after mopping my face from the exertion, I asked her if my results looked normal. She said, "Well, I can't give you the results. Your doctor has to do that."

I looked expectantly at her and waited. I know how these things work.

"Well......and this is NOT giving you the results, mind you......but if you were to tell me that you were going to stay awake tonight worrying about your lung function, I would tell you that you should just go right to sleep." And then she winked.

My kind of gal.

Woo hoo! Happy lungs! Happy Julia!