It's My Party and I'll Decorate If I Want To

October is almost here........and you know what that means, don't you?

It means that John gets to haul out a whole new set of dusty boxes filled with crap delightful seasonal decorations!

Woo!

It's funny how chronic illness has really changed my attitude toward this time of year when I load up my kitchen with black Halloween cats.

Hey! How did that flamingo get in there??

Since I became a Sjoggie, I look to autumn with anticipation. I view the first holiday in fall as my coming out party. Meaning it's the time of year when I get to come out of the house far more frequently than I do in the summer time, with fall's cool temps and less intense sunshine.

In actuality, I probably spend just as much time inside since October brings the Pacific Northwest's rainy season, but still. I know that should I be willing to grab my raincoat and waterproof shoes, I can go out any time I want, so there! Without my dumb hat! And I can scale back my sunscreen from a zillion spf to 15 spf, if I want to.

So I look forward to the time when I can dust off the boxes marked Halloween, and Fall, and Thanksgiving. And begin decorating for my coming out party.

Meow.

The Leaf Tour

Image found here.

Watch out, Vermont.

Terese and I are heading out to view the fall colors there in about a week, and I can't wait. We've been planning this adventure since spring, and unbelievably it's almost here. I guess I should clarify the planning part - actually, we've made arrangements for a place to stay, purchased our flight tickets, and rented a car. Beyond that, we're going to play it by ear. Which is probably a good thing. Since neither of us have visited New England before, this will be an opportunity to explore and enjoy at a very leisurely pace.

I'm taking my trusty Canon camera along, comfy clothes, and a great friend. What could be better?

Suggestions? Recommendations? Thanks!

Vitamin D and Depression

I know that I've posted repeatedly about the benefits of vitamin D. But if you haven't gotten the message about this wonder vitamin, here's more evidence:

September 23, 2010 — In a British national survey of older adults, clinical vitamin D deficiency, defined as a serum 25-hydroxyvitamin D (25[OH]D) level less than 10 ng/mL, was significantly associated with depressive symptoms, independent of age, sex, social class, physical health status, and season......If vitamin D deficiency is demonstrated to be a cause of depression, correcting the problem "could be an effective public health measure to reduce depression prevalence in later life," Dr. Stewart and Mr. Hirani conclude in their report.

The study was conducted by Robert Stewart, MD, of King's College London, and Vasant Hirani, MSc, of University College London, United Kingdom, and was reported in the September issue of Psychosomatic Medicine.

You can read more on Medscape Nurses here.

So go get your vitamin D levels tested, already. And if they're low, talk to your doctor, and stop and pick up a bottle of vitamin D supplements on your way home.

Hubble, Pillows, and Donuts

My son and his delightful girlfriend were down for the weekend. We had such fun. I think my favorite adventure came about because of a spur of the moment decision on Sunday afternoon.

We hopped into Goldie and headed into Portland to the Oregon Museum of Science and Industry. They currently have an Einstein exhibit showing, but also show several movies in an IMAX theater - one of those gigundo dome shaped theaters in which you recline back in your seat and try to take in everything that is shown on the enormous curved screen.

We decided to see the movie about the Hubble telescope and it was absolutely fantastic. Mind-blowing. Inspiring. Humbling. Filled with breathtaking shots of the universe.

While we were waiting for the film to start, my son's girlfriend and I reclined our seats and looked up into the cavernous white dome screen. We both sat quietly for awhile, and finally she said, "Wow. Do you see - just barely - how that screen is pieced together? Each one is so geometrically perfect."

Meanwhile, I was thinking, Wow. This dome looks exactly like a Grandma couch pillow -one of the round ones with the button sewn in the middle. OR maybe a super giant donut..wonder if we should swing by Voodoo Donuts on the way home....

Sigh.

Young, attractive, intelligent and logical. Old, um....and illogical.

Guess which one is me?

You can buy your very own Grandma pillow here.

Just Deserts

Thomas Merton in the fields near the Abbey of Gethsemani. (Credit: Sybille Akers)

Well, this is what I get for spouting off my big fat mouth. 

At a party on Saturday, a friend asked about Reasonably Well. She wondered how I managed to post something every day. Mostly. I waved my hand and airily replied that it seemed easy to find material. 

"Oh, you know. There's oodles of studies to read and report on. And I can always refer people to other blogs. And then there's goofy stuff that goes on around the house with the dogs and the kids and John and friends....."

She looked mildly impressed, then we moved on to another topic. 

So. 

Of course, today I'm drawing a complete blank. Sitting here at my laptop with absolutely no idea of.......well, anything. I haven't the foggiest notion of what I could type, write, or say. Nada.  

I suppose I could chalk up this complete absence of creativity and rational thought to brain fog after spending a busy day yesterday. I mean, I actually put on makeup and pantyhose and everything. Exhausting. 

But nah. I can't blame this blank computer screen on anything but the accuracy of Proverbs 16:18:  Pride goeth before the fall. 

Ah, geez. I hate it when I get what I deserve. 

I think a good meditation for me on this Sunday morning comes from Thomas Merton, Trappist monk and philosopher:

~ Pride makes us artificial and humility makes us real ~

Good advice. 

Cough Hack Wheeze Update

Image found here. 

Gee. I'll bet everyone is sitting around this morning over their Saturday cup of coffee wondering, "Hm. Is Julia's cough improving?"

Don't disillusion me here. I actually know better, but it's fun to hang out in foggy Julia-land.

So. I won't keep y'all waiting. Yes, my lungs are slowly becoming less cranky overall. But I did realize that even though I have been seen by two very good family practice doctors regarding the whole asthma/bronchitis/pneumonia adventure, I had to eventually present myself to my rheumatologist to get his evaluation of the situation. Because both F. P. doctors very firmly told me so in no uncertain terms.

It would have been really easy to put off yet another visit to the clinic by rationalizing that things seemed to be improving. Slowly, yes. But definitely better. My attempt at procrastination was foiled by a very alert medical assistant that notified my rheumy's medical assistant that I needed to be seen.

Rats. Caught by effective communication and competent staff. Ah, geez.

My appointment was yesterday, and I have to grudgingly admit that it was probably a good idea.

Did I mention that I have yet another new rheumatologist? My previous dr. was fabulous, but very overburdened with clients, as well as becoming the rheumatology department chair, so I scouted out yet another doc in the same department. I was worried. How many fabulous physicians could there be in one department? As it turned out, my new doc has his own brand of fabulousness. I'm one lucky Sjoggie.

So fabulous Dr. J. brought my latest round of Xrays into the exam room, gave my lungs a thorough listening-to - that's auscultation for you medical types - and pulled up a chair. "Well," he said. "Overall I agree with what you've been told on your past two visits."

Whew, I thought. Alrighty, then. See ya later, doc.

"Not so fast."

Drat. But doctor, check out my most recent chest films. I stood up to gesture toward my xrays hanging on the exam room reader. Look. They're gorgeous, if I do say so myself.

"You're right. Clear as a bell. BUT." Here he gave me a stern look. "I'll bet that you know that we need more information than a simple chest film."

Drat again. This guy IS good. I sat back down.

"Look, I know that diagnostic stuff is no fun, but we both realize - stern look again - that at the very least we need to do some pulmonary function studies here. If those are good, then we can agree that your continuing cough is related to dryness and hyper-reactivity of your airway passages. If they are less than optimal, then we need to do some more evaluation."

But wouldn't anything else have shown up on a chest film?

"Not necessarily. And while we're at it, let's get a bunch of labs, oh, and I see you're due for another pneumovax immunization..."

I slouched down in my chair. Well, dagnabit. I thought I had this all figured out. Looks as though I have some more research to do regarding other Sjogren's related lung issues, what diagnostics are required, and what normal and abnormal results would look like.

Which leaves me here on the Saturday morning searching medical literature like crazy. And drinking MY Saturday morning cup of coffee.

As always, I'll keep you posted. Carry on, people.

Dressing Disasters

You can buy your very own heel-less shoes here.

I'm going to attend a fancy schmancy wedding this weekend, and I have to be honest here. I am SO not a fancy schmancy person.

I suppose I could be more successfully fancy schmancy if I were willing to pay big bucks to do so. I know that the fine salespersons at any of our boutiques would probably do a great job finding tasteful clothing and accessories for .... um .... a full-figured person such as myself.

But I'm cheap. Really. This is partly due to the fact that I'm not working anymore, partly because John has us on an uber-strict budget, but mostly because it's just my nature. I look at shopping not as simply an opportunity to get something, but an opportunity to get that thing as cheaply as possible. Shopping is a quest. A challenge. It's good entertainment for someone with a lot of time on their hands.

However, this time I gritted my teeth and actually purchased a dress at full price, after trying it on, and got a second opinion for this outing. Woo. I did so because I remembered the last wedding I attended a year ago, and decided to buy an outfit off a clearance rack. In an extreme discount store. Which was going out of business.

Gee, wonder why the jacket and skirt streeeeetttttcccchhhheeeeedd at least three sizes by the time the reception was over? No kidding here - I actually had to roll the waistband of the skirt over at least twice just to keep it from dropping to the floor.

Ew. Wouldn't have been pretty.

Needless to stay, I spent the entire evening with my butt anchored firmly to my chair. No dancing, no flitting around socializing, and I only allowed myself one trip to the ladies' room to re-roll my skirt and pound my head against the bathroom door berating myself for making such a poor choice in outfits.

Then there was the time that I gleefully bought a pair of shoes - on clearance, of course - that were clearly marked, as is. As is? What could be wrong? They looked perfect, and fit beautifully. I looked the shoes over and couldn't see any defects. Well, that is, I didn't notice the defects until I was sitting in a large congregation at the front of a very large church and saw that the heels of both of the shoes were crumbling away. Completely. I left an enormous pile of shredded black plastic on the floor under the pew.

I'm not exaggerating, either. Terese witnessed the whole thing.

After the service was completed, I sat in the pew deciding how I was going to leave without making it apparent that my shoes were completely disintegrated. I decided to take each shoe off, and break the remaining heel completely away so that it appeared that the shoes actually were flats. Then walked down the center aisle leaving footprints of small bits of black plastic all the way out the door.

Good grief.

It's entirely possible that this weekend wedding will bring some clothing disaster, but the dress has been worn without incident before, and I'm grabbing a pair of shoes that have been worn also. Which leaves several other opportunities for embarrassment, I'm sure.

I'll keep y'all posted.

Well, That Explains Everything....

Alrighty, then.

I am a chocolate fiend. My little car, Goldie, is a Prius Hybrid. I've been known to utter Pardon me, but do you have any Grey Poupon ?, I recently did a post on one of my favorite movies, A Space Odyssey 2001, and I love love love Wynton Marsalis jazz.

I used to think that my choices in candy, cars, condiments, movies, and music were unique and part of my Julia individuality. But a recent study indicates that these types of choices may be a part of my genetic makeup:

"We examine a wide range of consumer judgment and decision-making phenomenon and discover that many - though not all of them - are in fact heritable or influenced by genetic factors," write authors Itamar Simonson (Stanford University) and Aner Sela (University of Florida, Gainesville).......They also found that likings for specific products seemed to be genetically related: chocolate, mustard, hybrid cars, science fiction movies, and jazz.

You can read more about this very interesting consumer marketing study here. 

Jenny's Flare

Reposted with permission of Jennifer Pettit, author of the Understanding Invisible Illness :

Inspired by my flare-fried emotions and Simon & Garfunkel's "The Sound of Silence", this probably more poetry than a performance piece, but whatever it is, it's here for you:

Hello Illness, my old friend, I’ve come to fight with you again,
Because inflammation ever creeping, has stolen health from my safekeeping.
And the tumid, aching tendons I have strained
Still remain; with them, the need for patience.

In mental fog I softly groan, a haze induced by Prednisone,
Imprisoned in an unrelenting cramp, I dread the winter’s weather – cold and damp,
My eyes burn still, Sicca Syndrome worsened by sunlight
A Sjogren’s plight. And wearing thin is patience.

When through blurred vision I first saw, other people – many more,
People suffering without speaking, others passing by without listening,
Patients reaching out needing hope, support, and care.
If love’s out there, we’re running out of patience.

Our inner strength en masse we’ll show, despair fades when awareness grows.
See us now, right in front of you! We’re all around and everywhere with you!
A few can see me now, but so many move on by,
I heave a sigh, and search my soul for patience.

For a moment I watch the world, my former goals within it twirled,
Pretending that inside I’m not mourning the loss of plans that I had been forming.
I know I’m blessed by God in so many precious ways,
But still it stays – my endless need for patience.

Image found here. 

Like

Over the weekend, John and I had another opportunity for an infusion of hugs and kisses from Godson. Which are a little harder to get since he's become very very mobile, BTW.

Then on to our favorite seafood restaurant for my all time favorite seafood - RAZOR CLAMS! Mmmmmm.

Fresh razor clam image found on Clamalot. Image of fresh, locally caught razor clams cleaned and panfried in a panko crumb coating not available since said clams were gobbled minutes after being served. 

Epic WIN.

The Flu Hates Humidifiers

Anyone want to guess what this image is? Anyone? It's a scientifically correct crocheted version of an influenza virus by artist Laura Splan. No kidding. Read more here. 

We Sjoggies know the value of a humidifier and what soothing moisture can do for dry eyes, mouths, lungs and lips. It turns out that there may be other very good reasons to run a humidifier in our homes especially as flu season looms.

Doc Gurley has written an excellent post which mentions the effectiveness of high humidity in reducing the transmission of flu. The topic of her post is seasonal flu and contains lots of very interesting and useful strategies to avoid succumbing to this year's variety.

Here's her take on the animal model used to obtain this latest data:

.....someone read an ancient (yes, 1919!) article that mentioned the fact that guinea pigs caught the flu during the pandemic of 1918. Which makes you wonder, doesn’t it? When they were searching for an animal species to be a scientific guinea pig, how is it no one [wait for the thought here, people, I know it's a shocker] tried actual guinea pigs? Somehow, it appears no one did. Until now. Suddenly, I’m embarrassed for scientists everywhere. But let’s just ignore the 91-year delay, and move on to what scientists have since learned........

Check it out.

You can read more about atmospheric humidity and flu virus transmission here and here.

You Know You're Feeling Better When.......

Watch out, everyone.

I'm baaaaaccckkk!

It has crept up on me slowly, but this morning after bustling around the house a bit and tsk tsking over the enormous dust bunnies in the corners, I realized that I was truly feeling better.

Call me weird, which of course I am, but it appears to me that my attitude towards the cleanliness of my house is inversely proportional to my overall feeling of well-being. Or to put it another way, the worse I feel, the better the house looks. And vice versa.

For example: Post-pneumonia Julia looking in bathroom - AAAAAAACCCCKKK! Where's the toilet brush?? And the bleach?? And the Windex?? And my extra-thick rubber gloves??

Pneumonia Julia looking in bathroom - Oh, good. We have a toilet. *cough* *hack* *wheeze*.

Post-pneumonia Julia recoils in horror as she sees the dust layer on the entertainment center.

Pneumonia Julia - Aww. Pretty designs in the dust......maybe I should write our names in it....dum de dum....

Too bad recovery comes along with an armload of cleaning supplies.

Image above AND tips for cleaning your house found at CountryLiving.

Sjogren's Syndrome and Gastroesophageal Reflux Disease

Image found on WebMD

The Sjogren's Syndrome Foundation has released another of it's excellent patient education sheets, found this month's issue of Sjogren's Quarterly. SSF members can log in to the Foundation site to review all of their education materials. 

The latest is entitled Reflux and Your Throat and is authored by Soo Kim Abboud, MD, Assistant Professor with the Department of Otolaryngology, Head and Neck Surgery, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania:

While the exact reasons are unknown, may patients with Sjogren's suffer from gastroesophageal reflux disease. (GERD). This can cause a wide variety of symptoms that can be mistaken for other conditions. Symptoms may include persistent heartburn and/or regurgitation of acid, stomach pain, hoarseness or voice change, throat pain, sore throat, difficulty swallowing, sensation of having a lump in the throat, frequent throat clearing and chronic cough (especially at night time or upon awakening).

Tips for combating gastroesophageal reflux in the throat:

• Avoid lying flat during sleep. Elevate the head of your bed using blocks or by placing a styrofoam wedge under the mattress. Do not rely on pillows as these may only raise the head but not the esophagus.
• Don't gorge yourself at mealtime. Eat smaller more frequent meals and one large meal.
• Avoid bedtime snacks and eat meals at least three-four hours before lying down.
• Lose any excess weight. 
• Avoid spicy, acidic, or fatty foods including citrus fruits of juices, tomato-based products, peppermint, chocolate, and alcohol.
• Limit your intake of caffeine including coffee, tea and colas.
• Stop smoking.
• Don't exercise within one-two hours after eating.
• Promote saliva flow by chewing gum, sucking on lozenges or taking prescription medications such as pilocarpine and cevimeline. This can help neutralize stomach acid and reduce symptoms. 
• Consult your doctor if you have heartburn or take antacids more than three times per week. A variety of OTC and prescription medications can help but should only be taken with medical supervision. 

Linus Pauling Institute - Micronutrient Research for Optimum Health

I've posted repeatedly over the years about my struggle to understand the role that nutrition may play in autoimmune health issues.

To be honest, I'm looking for a definitive study that links mango margaritas to a cure for Sjogren's syndrome. Haven't found it yet, but I'm certain that it's gotta be out there somewhere...

In the absence of such a study, I'm content to continue to explore information regarding the effect that food has on our health. Imagine my surprise to discover that the Linus Pauling Institute of Oregon State University, dedicated to ongoing research into micronutrients and health, is located practically in my backyard. As a matter of fact, John and I actually have contributed indirectly to the LPI via two years of tuition sent their way. This from the OSU website:

The Linus Pauling Institute was co-founded in 1973 by Linus Pauling, Ph.D., the only individual ever to win two unshared Nobel Prizes (Chemistry, 1954; Peace, 1962). More than 40 years ago, Dr. Pauling concluded that vitamins and other micronutrients play a significant role in enhancing human health and preventing chronic diseases, not just deficiency diseases. He founded his own institute to carry out research in this field that he believed would be of enormous importance to public health. The Institute moved from Palo Alto, CA, to the campus of Oregon State University (Dr. Pauling's undergraduate alma mater).

Researchers at the Linus Pauling Institute investigate the role that vitamins and essential minerals (micronutrients) and chemicals from plants (phytochemicals) play in human aging, immune function, and chronic diseases, especially heart disease, cancer, and neurodegenerative diseases. A major emphasis is to understand the role of oxidative stress and inflammation in disease etiology, and the preventive effects of dietary constituents with antioxidant or anti-inflammatory properties.

The goal of these studies is to understand the mechanisms by which diet, micronutrients, and dietary supplements affect disease initiation and progression and can be used in the prevention or treatment of human diseases, thereby enhancing lifespan and healthspan.

Their site is incredibly informative for anyone looking to learn more about nutrition and the management of disease. The Institute has made some recommendations based on their research for healthy diet and vitamin supplementation for average, healthy adults. You can read them all here, and don't skip the part about healthy eating and lifestyle. I've chosen to highlight their suggestions for supplements in this post. It's interesting reading, and click on their links for data supporting their recommendations. 

Linus Pauling Institute Recommendations for Supplements

• Multivitamins:

  Take a multivitamin supplement with 100% of the Daily Value (DV) for most vitamins and essential minerals, keeping the following suggestions in mind: More on multivitamins
  • Iron: In general, men and postmenopausal women should take a multivitamin without iron. More on iron
  • Vitamin A: Look for a multivitamin containing no more than 2,500 IU of vitamin A, or, if unavailable, a multivitamin containing 5,000 IU of vitamin A, of which at least 50% comes from beta-carotene. More on vitamin A

• Vitamin C:

  Aim for a daily intake of at least 400 mg. Multivitamins usually provide 60 mg of vitamin C, and five servings of fruits and vegetables about 200 mg. More on vitamin C

• Vitamin D:

  The Linus Pauling Institute recommends that generally healthy adults take 2,000 IU (50 mcg) of supplemental vitamin D daily. Most multivitamins contain 400 IU of vitamin D, and single ingredient vitamin D supplements are available for additional supplementation. More on vitamin D

• Vitamin E:

  Take an extra supplement of 200 IU of natural source alpha-tocopherol (d-alpha-tocopherol) daily with a meal. More on vitamin E

• Calcium:

  No multivitamin supplement contains 100% of the DV for calcium. If your total daily calcium intake doesn't add up to 1,000 mg add an extra calcium supplement (with a meal) to make up the difference. More on calcium

The spring newsletter 2010 included an interesting interview with the current LPI director regarding his own personal use of vitamins and supplements. His daily regime is very similar to LPI suggestions:

Balz Frei, Ph.D.
LPI Director and Endowed Chair
Distinguished Professor of Biochemistry and Biophysics

As director of LPI, I am often asked what supplements I take—after all, thinking about and researching micronutrients every day, I should know what dietary supplements are most important. While I think eating a healthy diet, exercising regularly, maintaining a healthy body weight, and avoiding tobacco are of utmost importance to maintain good health, I also think that some dietary supplements are critical for optimum health.

First, I take a daily multivitamin/mineral with 100% of the Daily Value (DV) or Recommended Dietary Allowance (RDA) of most vitamins and essential minerals. I take this multivitamin primarily as "health insurance"; that is, to make sure I get at least the recommended amounts of most vitamins and minerals in case I don't get each and every one of them from my daily diet. This multivitamin is not an excuse not to eat a healthy diet; instead, I consider taking a multivitamin part of a healthy lifestyle. Plus, it's dirt cheap—you can buy a year's worth of multivitamins for less than a nickel a day!

You can read the the rest of his interview and his rationale for supplementation here.

A reminder - these recommendations were formulated for healthy adults. Never begin using vitamins and supplements without a discussion with your health care provider, since many supplements can cause harm when interacting with prescription medications or in the presence of certain medical conditions.  

Paraffin Relief for Joint Pain

Image of paraffin granules found here. 

I love receiving comments and emails from other Sjoggies, especially when they contain some excellent suggestions for coping with Sjogren's syndrome. I hope that y'all don't mind when I yoink your thoughts and post them here.

The latest tidbits are from Stephanie:

My new GP gave me a couple of hot tips. He prescribed me physical therapy visits at my suggestion, as he agrees with me that the PT could help me with exercises, stretching, etc., that are specifically designed for sore joints; to ease the joints and strengthen surrounding muscles, which would take the strain off my joints.

The second hot tip he gave me was to buy (from Bed Bath & Beyond or similar store) a parafin wax soaking kit for your hands. The parafin wax is advertised to make your skin soft, but my doctor says it gets heat into your joints that you can't get from regular heat alone and is very soothing.

What good ideas. Many Sjoggies experience firsthand the discomforts of autoimmune-related joint pain. The benefits from expertise from a physical therapist in the management of joint pain is invaluable.  

NIAMS - the National Institute of Arthritis and Musculoskeletal and Skin Diseases also mentions the beneficial use of paraffin as a means of delivering therapeutic heat to inflamed and painful joints in a really thorough discussion of rheumatic diseases:

Heat therapy increases blood flow, tolerance for pain, and flexibility. Heat therapy can involve treatment with paraffin wax, microwaves, ultrasound, or moist heat. Physical therapists are needed for some of these therapies, such as microwave or ultrasound therapy, but patients can apply moist heat themselves. Some ways to apply moist heat include placing warm towels or hot packs on the inflamed joint or taking a warm bath or shower.

Here's a link to Discovery Health's information regarding the use of commercially available paraffin baths. These applications are aimed more toward improving the physical appearance of skin, but the basic concepts are similar.

Paraffin wax baths are typically small tubs that are just large enough to submerge your hands or feet. The tubs are heat-producing appliances, so when paraffin wax is added to the tub, the wax melts into a warm liquid in which hands, feet or elbows can be immersed. Because paraffin wax has a low melting point of 125 to 135 degrees Fahrenheit -- which is slightly cooler than your average latte -- it's generally safe for extended skin immersion [source: Southwest Wax]

I would approach home-made paraffin bath methods with caution due to the potential for injury from burns if paraffin or the heating container is too hot, or danger of fire or combustion since paraffin is flammable. Never use paraffin or other moist heat applications on open sores or wounds. 

A Gathering Storm

Listen. Can you hear that? If you're within a hundred mile radius or so of me, it's hard to miss.

Yep. I'm still coughing. Less, but still....

I think I've chugged every flavor of cough syrup currently marketed in the US, and have consumed a truckload of menthol cough drops. And by the way? All those cough drops labeled euphemistically as citrus or honey or wild cherry or eucalyptus are simply menthol with a hint of another flavor. Bleah. I've used up an entire inhaler canister - a first for me - and am still popping antibiotics. With another follow-up exam coming up soon with my doctor, I know that the end of the cough is inevitable, but can't come soon enough.

Thanks for your best wishes, guys.

My biggest concern with this latest health challenge isn't that it will be conquered. Nah. This too, shall pass.

No, I'm increasingly worried about another facet of Julia that has been quiet through this experience. Waaaay too quiet. Docile. And come to think of it, totally missing in action.

Hmm.

My Bratty Inner Child Julia that we all know and ahem..love... would usually take complete advantage of a situation like this. A situation when I feel crummy. One that just screams for pampering and milk shakes and fizzy sodas and chocolate. Pounds and pounds of chocolate. I'm shocked that BICJ hasn't made at least two flying trips in Goldie to drive through the Krispy Kreme donut shop for purely medicinal purposes. While in her jammies.

It may be just asking for trouble to even take note of the fact that this hasn't happened yet, and I have a sinking sensation that I'm opening up Pandora's box simply by writing this post, but I am flummoxed by her absence. So far, yeah, there's been a few indulgences, like the occasional half cup serving of raspberry sorbet...mmmmm.....and hot chocolate and lots of tea. But a completely wild-eyed BICJ intent on complete dietary disaster hasn't shown up.

Yet.

I wonder where she is? Is it possible that she's.......off creating havoc elsewhere? Gosh, of course not. Let's not get ridiculous here, honestly.

But still....

I wouldn't make this bizarre hypothesis except for the fact that I have been watching the Weather Channel occasionally over the past few days and have watched the latest string of hurricanes and tropical storms marching their way across the oceans.

It seems next in line to hit the Americas is Hurricane Igor. He's a category 4 already and has sustained winds of 135.

Hm. If we look further out, what's next? Oh, man! I knew it! There she is!

Hurricane Julia.

You can watch Julia's progress here, on the National Hurricane Center site.

Ah, geez. I wonder if NOAH realizes what they're in for. I'll bet I can predict what course she'll take - she'll make a beeline for the nearest Dairy Queen and a Butterfinger blizzard. Batten down the hatches, folks.

Mmmmmmmmassage

You can buy your very own trickling water fountain here.

Ever had a massage?

I remember my first - and sitting nervously in a posh spa waiting room. After only ten minutes, I had already gone to the bathroom twice, possibly due to anxiety but probably in response to the sound of tasteful but constant trickle of water fountains in every corner of the room. The massage was a gift from a friend, who had been relentlessly prodding me to just go and use the darned thing. So we did - together. She had already been whisked away by a receptionist to her masseuse and I was left fretting and wondering what was in store for this old body.

The bulk of my anxiety regarding the massage focused on the fact that a complete and total stranger would be rubbing my body with her hands.

Ew.

Fortunately, the staff was respectful and competent. After my massage I lay facedown on the table, relaxed to the point of melting. I was certain that if I tried to stand up, I would immediately glop to the floor in one big ooze.

Ahhhh. Bliss.

I was reminded of this experience as I read this interesting news item today, which discusses the results of a study conducted by Cedars-Sinai's Department of Psychiatry and Behavioral Neurosciences. The study concluded that massage actually modifies the body's immune response:

Prior to the massage, study participants were fitted with intravenous catheters in order to take blood samples during the study session. Then participants were asked to rest quietly for 30 minutes. Following the rest period, blood samples were collected from each person five minutes and one minute before the massage began. At the end of the 45-minute massage session, blood samples were collected at one, five, 10, 15, 30, and 60 minutes after the massage.

The study participants had measurable changes in blood immune and endocrine components after the massage, including a noticeable decrease in cytokines (some of which create inflammation) released by white blood cells.  You can read more about the relaxing results here. 

Want to refresh your memory about immune components in YOUR blood? Read this, courtesy of the Merk Manual site.

National Chronic Invisible Illness Week 2010

Jenny Pettit

This week, September 13th - 19th, is National Chronic Invisible Illness Awareness week. You can read more about events during this special awareness week and read an excellent article by our Sjoggie friend, Jenny Pettit, here.

Included in this week's activities are online conferences available free of charge Monday - Friday. Click here to view the scheduled speakers.

Want to find out more? Watch this YouTube video by NCIIAW founder, Lisa Copen.

Bright But Never Boring

Some of the best advice that I received early on in my adventure with autoimmune disease was given to me by another Sjoggie on the Sjogren's World forum. I wish I could remember exactly what she said, but the gist of it was this: Chronic illness can be boring. Don't let it be. There's so much interesting stuff going on everywhere and all you have to do is pay attention.

I've thought about her comment more than once over the past month as I've been spending time recuperating from my pneumonia adventure. Lots and lots of time, actually. Yep. Hours and hours and hours.....

Lucky for me, even though John and I are empty-nesters, our kids and friends continue to provide entertainment galore, and I have a front-row seat for it all. I may have been house-bound lately but I have not been bored. Concerned, yes. Interested, definitely. But not bored.

The latest round of amusement is a real goodie. My son, as I've mentioned previously, loves a project. Specifically big big projects that ideally involve either fireworks exploding or at the very least miles of flashing lights. You've seen the commercials at Christmastime which have homes covered with lights that flash in sync to Christmas music? That house that is so obnoxiously brilliant and loud that it is mentioned in newspaper articles and discussed venomously by homeowner associations? One of those homes that everyone loves to look at on YouTube but nobody wants to live next to?



Yes. It's true. If son and husband finish their latest project, our quiet, unassuming home on a quiet little street will be THAT house.

Sigh.

In their defense, this plan was hatched with the consent and knowledge of our neighbors. Actually, I was a little surprised when a couple of them offered their homes as extensions of the project. As in an illuminated and motorized Rudolph on a zip line crossing the road.

Since the plan began during one of our neighborhood New Year's Eve parties, I was hopeful that perhaps the appeal of this project would fade as the year went on, but realized in early February that would not be the case when an entire palate - yes, palate - of lights was delivered to our garage. My son enthused, "This is a GREAT time to buy these things! All on clearance!"

Hoo boy.

This weekend, lengths of pvc pipe began to be implemented in the research and discovery phase. Scissor lifts were discussed.

I definitely will not be bored this fall and winter.

True Heroism

Image found here. 

On Thursday, September 9th, a massive natural gas explosion rocked San Bruno, a city about 12 miles south of San Francisco. You can read more about this terrible disaster here:

Workers and officials look over a crater caused by a massive explosion in a mostly residential neighborhood in San Bruno, Calif., Friday, Sept. 10, 2010. At least 50 people were hurt, with three suffering critical burns in the explosion Thursday evening that left a giant crater and sent flames tearing through the middle-class neighborhood of 1960s-era homes in hills overlooking San Francisco, the bay and the airport.

Doc Gurley has written an excellent post in which she examines human nature in the face of this disaster followed closely by the memory of the terrible events of 9/11 in New York City. 

When disasters like the San Bruno blast destroy lives, I’d personally like, instead, to have us all shift just a wee bit of our attention toward the best of human nature that is often manifest in only the worst of tragedies.

What am I talking about? I’ve been in emergency rooms and around ambulances enough to know a bit of what it might have been like last evening in San Bruno. Not all the details – just an echo. But even that is enough to make my palms sweat.

Imagine the entire chain of human activity. The firefighters who drove straight toward the blaze, even as the tower rose higher and higher to engulf the very sky, knowing this was something no one with a hose and a truck could stop or even contain. The sweat and the sizzle as you run from one paint-bubbling house to the next, imagining the screams of children as you knock and yell and draw an X on one house, only to sprint, heart pounding, to the next......

It's an amazing heartfelt and moving post written by one who has been there on the front lines. Head over to Dr. Gurley and read it all. 

Heeeeere's Grumpy!

Image found here. 

A few days ago, as I was sitting in my clinic's radiology waiting room, I was cranky. Grumpy. And I was grouchily intent on remaining that way. I felt as though after an entire month of coughing I deserved to be as surly as I wanted to be.

So there. Nyeah!

An X-ray technician called my name, and I grumped myself into the department. She smiled.

"I heard you coughing from a mile away.....I'll bet you need a chest X-ray, right?"

No kidding, genius.

"We'll get this over as quickly as possible." She steered me into the changing area and within minutes, I was rotate your shoulders forward and take a deep breath and hold it - ing. As I was going through all the machinations of getting a chest X-ray, I could hear other staff engaging in lighthearted banter in the hallway.

The nerve. How could they laugh in the face of suffering such as mine??

"Well, it looks as though we're all done here. Can I get you a drink of water? Do you need time to rest?" X-ray tech lady looked concerned.

Oh, sure. She probably puts on the caring act for everyone...just like the fake stewardess buh byes when you get off an airplane.

"No water? OK. Well, I sure hope you feel better soon!" she said. I had to grudgingly admit that she sounded sincere. But I was intent on wallowing in my gloom, so I thanked her solemnly and headed back down the hallway to my doctor's office, big manilla folder containing my X-rays in hand.

"Hey! She's back!" was the greeting as I returned to my doctor's waiting room. "C'mon in."

I plodded directly back to the exam room, suspicious. Cheerful? AND no waiting? What's going on here??

The medical assistant popped her head into the exam room. "Sounds as though you're really uncomfortable with that cough. Would you like a nebulizer treatment like last time?"

I stoically shook my head. Nuh uh.

"No? Can I get you anything else? No? Well, the doctor should be here in a jiffy." She smiled sympathetically as she headed back to her desk.

I sucked on my menthol cough drop reflectively. I began to suspect that there was a conspiracy in full force here. When the medical assistant returned in a few seconds to let me know that she was just around the corner if I changed my mind about the nebulizer, I KNEW it.

These people were trying their darndest to wreck my much deserved and thoroughly enjoyable cranky tantrum, and I had to admit that they were making small but effective chinks in my grumpy armor.

"Well, Julia," said the doctor, "it looks as though you have a pneumonia going on here. Gee, I'm sorry to see that. But don't worry, we'll get you fixed up in no time." She patted my shoulder as she pulled out the films, knowing that I would want to see them for myself. "See that bit of cloudiness in your right upper lobe?"

Dang. She was good, remembering that I have had some basic experience looking at chest films in my previous RN life....

"Now. How do you feel about treating this with....." and went on to discuss our options.

Ok. At that point I had to concede that it was time to wave the white flag. And let a small smile crack the stony expression on my face.

I knew when I was up against a formidable opponent, and I knew that I had lost, fair and square.

I left the clinic grinning.........in defeat.

Thanks, Guys!

Image found here. 

I appreciate all the comments hoping for a quick recovery! Your good thoughts must be working because I am beginning to feel better already. Instead of  *cough* *hack* *wheeze*, it's just *cough* around here today.

Woo.

Back in a Few Days

I'm putting myself in a time-out for the next couple days.

My stupid cough has progressed and it seems that I also have pneumonia.

See ya in a few days.

When Organic Isn't Organic

When I pull foods from the grocery shelves and meat coolers, if the package is clearly labeled, "organic", well....I expect that product to be organic.

Shouldn't that be obvious?

Not so, according to the Consumer Reports Health Blog. Read this regarding new proposed standards for Canadian seafood:

A group of more than 40 organizations, including our publisher, Consumers Union, came out hard against a set of proposed standards for organic Canadian seafood this week. The proposals would allow an organic label to be slapped on fish that comes from farms that use antibiotics and feed their fish up to 30 percent nonorganic food—including fish from the wild that could easily contain mercury and PCBs, according to a letter from the groups.

You can read the entire post here.

Hm. Something fishy is going over there........

Making My Own Ocean

photo mine.

You may recall that awhile back, I was diagnosed with an asthma-like condition. You can find more information about Sjogren's syndrome and cough here.

Somewhere in the midst of figuring out my new medications and inhalers, John and I took a wonderful lazy excursion out to the Washington coastline, and while we were there, he noticed the remarkable decrease in my coughing and wheezing. John was right - as I stood in front of the sea breathing in all that wonderful wet salty air, my lungs became happier than they had been in a very long time.

When we returned home, even though our house is only 90 miles from the ocean, I immediately noticed that my breathing worsened and coughing increased. It was an interesting topic of discussion over dinner that night.

So I suppose that there could be a zillion reasons why my lungs are happier by the ocean. Less allergens? More moisture? The natural occurrence of sea salt mixed in the breeze? Eating pounds of fresh oysters, razor clams, and salt-water taffy?

I think that trying to re-create an ocean at my house would be hard. Can't imagine what the neighbors would say as we hauled in truckloads of sand and various sea creatures, not to mention excavating the entire back yard to create an enormous body of water. And how to make waves....hm.........It wouldn't be too much to ask all my family and friends and neighbors to sell their houses and we could all relocate to the coast, would it? Easier. Much easier, definitely.

Honey? You may want to get started on that project. Honey? Honey? Funny how John has a selective hearing loss occasionally.

It might be cheaper to invest in a cool mist humidifier for my bedroom. I wonder if adding sea salt to the humidifier water to create my own ocean breeze would help. I seem to recall the use of normal saline solutions for humidification in respiratory disease way back in my hospital nursing days. Since my humidifier doesn't turn the water into steam and distill the salt out of the solution, it may be worth a try with my cool mist.

The breathing experiment continues.

Successful Mistakes

Image found here. 

"Anything that is successful is a series of mistakes." -- Billie Armstrong

I'm trying really, really hard to find inspiration in this quotation today, as I struggle to button my favorite pair of jeans. I'm not happy about the fact that they're so snug that I have had to put them aside and pick something else to wear. 

Grrrr....

So my jeans incident spurred me on to a renewed focus on eating healthily, and I headed over to the grocery store to stock up on "good" foods. I cruised all the aisles checking labels and didn't end up buying anything except salt and Baggies, for pete's sake. 

Not kidding here. Just ask John. 

I was so frustrated at the paradox of the enormous volume of food on the shelves in the store, yet how so little of it met two criteria: to taste good AND be good for me. Meaning wheat-free, low-sugar, artificial sweetener-free, as organic as possible, low-fat, ah.......we all know the drill. I found myself becoming more and more frustrated as I wheeled my cart past the endless amounts of cookies, chips, pastries, candy......until I realized that I was either going to cave and load up my basket with unhealthy junk or leave without buying anything. 

I drove home fuming. And I have to say that I'm very proud of myself that I didn't attempt to make my crankiness disappear by driving through for a large Butterfinger blizzard at Dairy Queen along the way. Yet it's what I really really wanted to do, which is a good example of the choices that I've been making that have brought me to this discussion. 

Why is managing my weight such a struggle?? I know that I'm not alone in the battle of the bulge, so I know that others out there fighting the same war. Lots and lots and lots of us are making the same series of dietary mistakes. But when we go to shop in the local grocery store, first we have to pass innumerable enticing fast-food joints and their brand of fat-creating food-like substances. If we actually find ourselves in the grocery and try to stay within a monetary and caloric budget, well geez. It's war out there, people. 

So my weight management plan so far has been a serious succession of significant mistakes. Guess I've just got to keep making choices.....and making mistakes....and most importantly, to keep learning from those mistakes. I think the biggest mistake of all would be to quit trying to understand my body's relationship to food.  

Repeat after me, Julia: Success is a series of mistakes.....success is a series of mistakes.....success is a series of mistakes.....

Great Gifts

So, when I presented Terese her birthday gift this year, she took the gift bag rather gingerly. I can't imagine why she would appear reluctant to open one of my fabulous birthday gifts. Tsk.

A few years ago, I presented her with a real beauty. A gem. A gift that anyone would covet.

I found it in Long Beach, WA, a small coastal city, where a famous side-show attraction named Jake the Alligator Man resides. He lives in Marsh's Free Museum and is a world-wide celebrity. I ask you - who wouldn't love a t shirt with a large image of Jake printed on the front?

I would have thought that Terese would be sporting this shirt whenever she wanted to look really elegant, but she only brings out Jake when she is mowing the lawn. Or digging in the garden. Or painting.

Go figure.

Come to think of it, I haven't seen Greg wearing another of my birthday gift treasures, either. It was a real beaut, too - a t shirt with lederhosen and a beer logo imprinted on the front AND back! I ordered it from the Leinenkugel's Brewery and I noticed that they don't carry them anymore, so it's a real collector's item now. Ooooooo.

My gift this year for Terese was exceptionally tasteful. I found a birthday card that had a herd of cows that moo when certain buttons are pressed! And a box of cow patty candies! A theme gift! Fantastic!

You can order your very own Cow Pies from the Baraboo Candy Company here.

Birthday Girl

Photo: Momologie.com

We interrupt this vacation for a brief announcement:

Happy Birthday Terese! 

We celebrated with a yummy dinner at a rib joint that thankfully did NOT have baby octopus on it's menu, followed by a frozen custard dessert. Ever have an Elvis? It's peanut butter frozen custard with fresh bananas blended in.

Oh. My. Goodness. Bliss.

That's all. As you were, people.

Carry on.

We're On Vacation Today

John has taken several vacation days over the past week, and we have been a couple of roaming-around, carefree lazybutts.

It's been great.

I'll hate to see it all come to an end. I kind of like having John around 24/7.

Who knows what we will do today? Could be just about anything. I'll keep you posted.

Helminths and Autoimmune Disease

Finish eating your breakfast before reading today's post. Trust me. 

Image found here. 

Of course I've been reading everything that I can find about asthma lately. There's an enormous amount of information out there, and it takes time to sift through it all and try to make sense of it. Some recommendations and suggestions regarding asthma treatment seem logical and reasonable. I'd consider talking to my doctor about most of them.

However. 

Then I read about another therapy. I was totally flummoxed when I read that it's proponents claim that this therapy is a cure-all for asthma and a plethora of other autoimmune diseases. 

It's called helminthic therapy, which means the therapeutic use of parasitical worms to treat human disease. Or, in other words - willingly putting live. worms. into. your. body. 

Ew! Yuk! Barf! Gag! 

I immediately assumed that this was some weirdo cockamamy idea concocted by a sadist that just enjoyed seeing people do awful things to themselves. 

Boy, was I surprised when I read this from the National Institutes of Health:

There is an epidemic of immune-mediated disease in highly-developed industrialized countries. Such diseases, like inflammatory bowel disease, multiple sclerosis and asthma increase in prevalence as populations adopt modern hygienic practices. These practices prevent exposure to parasitic worms (helminths). Epidemiologic studies suggest that people who carry helminths have less immune-mediated disease. Mice colonized with helminths are protected from disease in models of colitis, encephalitis, Type 1 diabetes and asthma. Clinical trials show that exposure to helminths reduce disease activity in patients with ulcerative colitis or Crohn's disease. This chapter reviews some of the work showing that colonization with helminths alters immune responses, against dysregulated inflammation. These helminth-host immune interactions have potentially important implications for the treatment of immune-mediated diseases. 

Blink. Blink. Are you kidding me??

And this, from the Crohn's and Colitis Foundation of America:

Over many thousands of years, our genetic selves have evolved in close proximity to the many organisms that live within and on our bodies, and that we encounter through every day life. Due to the process of mutual co-evolution, some of these interactions have become important for proper development and maintenance of our immune systems, intestinal lining and perhaps other organs within our bodies. In the 20th Century, changes in our life-styles have been progressively removing us from our natural environment. This may have eliminated key microbial, viral and helminthic interactions resulting in system dysfunction predisposing us to immunologic and perhaps other diseases. 

But wait - there's more from this NIH study completed at the University of Iowa: 

One of the factors leading to the emergence of IBD may be lack of exposure to helminths. This exposure normally begins early in childhood, setting up immune response patterns that continue for the life of the individual. In addition to IBD, other immune-mediated diseases have emerged with establishment of modern hygiene.[34] Exposure to schistosomes can protect animals from developing insulin-dependent diabetes[69] or experimental autoimmune encephalitis (a model of multiple sclerosis).[70**,71] Exposure to helminths may protect from allergy and asthma.[51] This suggests that helminths may have served as a lid on a "Pandora's box" of immune pathology. Future study of helminths will identify mechanisms of immune regulation, will potentially uncover novel compounds that alter inflammatory responses, and will address the myriad of questions surrounding their potential for clinical application.

The authors of this study go on to describe their favorite helminth:

Favorable Characteristics of Trichuris Suis:

• Closely related to human whipworm Trichuris trichuria
• Produces a self-limited colonization in humans
• Has no known pathogenic potential
• Remains confined to the intestine
• Does not multiply in the host
• Cannot be directly spread to close contacts
• Eggs can be obtained from pigs grown in specific pathogen-free environment

Um. Hm. Well, now. 

Come to think of it, way back in '76, my bacteriology professor, who was a very nice man but had a short fuse when it came to freshman nursing students, used to tell us that he thought that all the new anti-bacterial products entering the market were bad news. He predicted that killing off all his favorite germs and other nasty critters in our homes was not necessarily a good thing. We, of course, made twirly motions next to our temples when his back was turned, crossed our eyes, and stuck out our tongues. Indicating that we thought he was slightly batty. 

Yes, yes, Dr. Pinney - You were right. WE were the batty ones, for lots and lots of reasons. And, um, sorry about the twirly thing, in case you're reading this.....of course, I never actually did it, it was Kathy and Diane and Dianne....oh, and Karen. Absolutely Karen. 

What Dr. Pinney was trying to explain to us is now called the Hygiene Hypothesis, which is explained really well in this article written by Dr. Kristin Kirksiek and published in Infection Research. Here's the summary, but please read the whole article as she does an exceptionally good job in explaining more about helminth therapy and why it may work.

The trend is startling: for decades, allergies and autoimmune diseases have been on the rise. At the same time, we’ve gotten a relatively good handle on infectious diseases. Is there a connection? Yes, according to the widely supported “Hygiene Hypothesis”, which proposes that by reducing our exposure to infectious agents, we’re denying our immune system the practice it needs to develop correctly. Parasites – more specifically helminths – may play a particularly important role in this setting. Worms are not only masters of hiding, they have evolved quite a bag of tricks to suppress the immune system. As we have co-evolved with these live-in guests, we may have come depend on “worm-specific factors” to keep the immune system on track. Researchers have taken this notion to the next level, using helminths to effectively treat serious autoimmune diseases.

I don't think I'm ready to invite Trichuris suis into my colon anytime soon, but this is an intriguing concept that will be interesting to follow.