Thursday, October 13, 2016

Pigeons: More than meets the eye.

Image from Wikipedia 

Disclaimer: This has nothing to do with Sjogren's Disease. Also: Who cares?

Here's an interesting little tidbit of information: Pigeons can spot breast cancer in medical images about equally as well as humans do.

Say WHAT?! So I'm wondering about a couple of things. First, what kind of scientist would even wonder if these feathery bird brains had that specific capability? Secondly, how did he or she train them to do this?

And the biggest head-scratcher of all: so what are they planning to do with this discovery? Even the researchers concede that there would be big obstacles in hiring the grey winged wonders:
"And even for the lower-level tasks where the birds matched human abilities, there would be huge regulatory and legal hurdles to actually using them in diagnosis."
I don't even want to hypothesize what legal wording would look like when discussing pigeons and medical imagery and cancer in the same sentence. And would the regulations include pigeons wearing birdie diapers? And white lab coats? 

Here's the link to the story by Read it and you can formulate your own questions: 

In lab tests, common pigeons were taught to read some of the same subtle cues in x-rays and microscope slides that medical professionals look for to distinguish between healthy and cancerous tissue. After just over two weeks of training, the pigeons could make the correct diagnosis 85 percent of the time, an astonishing level of accuracy that rivals the performance of human pathologists.
While you won't be booking an appointment with a pigeon doctor anytime soon, the results suggest that the birds could play a role in evaluating new medical imaging techniques and creating better display technologies.
“Pigeons may not be able to write poetry, but they’ve had millions of years to develop the abilities that they need to navigate a very complicated and dangerous world,” quips study leader Richard Levenson, a professor in the department of pathology and laboratory medicine at the University of California, Davis. “So it doesn’t surprise me that they can do pathology!”
Read more here

Tuesday, October 11, 2016

GoFundMe: Help Christine Smile

I know that this courageous young woman's Spoon Theory has certainly helped me to explain my chronic illness and fatigue to others. But it appears that Christine Miserandino is struggling with yet another battle requiring strength and courage. Read on:

Have you ever heard of The Spoon Theory? 

It's a story that Christine Miserandino wrote that helps explain what living with Lupus or any other chronic illness is like. After having been asked what it was really like by a friend – Christine grabbed the nearest thing to her – spoons (she was in a diner after all) and gave them to her friend. Then she asked her friend to describe her day. Her friend made generalizations like – getting up to pee, brush her teeth, get breakfast. 
Christine broke it down for her – first she had to get her body moving in bed, then she had to stave off the nausea in order to walk to the bathroom. Breakfast – yea, she needed to eat something – in order to take her handful of pills, but what do you fix – and eat – when you have nausea and no appetite. 
Each of these tasks takes just a bit of energy – which adds up to spoons. The more she went thru the day – the more the spoons disappeared. Before the end of the day – the spoons were gone, and like I said – the day wasn't over. 
What do you do then? 
You can read the entire essay here:
She wrote The Spoon Theory in 2003. Since then it has been read and translated all over the world – yup – all over the world. The Facebook page for has over 1 million fans. The fans that are sick – well, we call ourselves Spoonies. Every day messages of thanks come to Christine for giving a way to explain the fatigue, the fog, the pain of being chronically ill. It fills Christine's heart to know that she's touched so many in such a meaningful way. 
One of her fave quotes is 
“We rise by lifting others” Robert Ingersoll
This is where the Spoon Lady is today – she has lost her beautiful smile. 
Everyday, she wakes, takes her medicines and puts on her beautiful smile for the world to see. The smile that says to the world – But I Don't Look Sick! 
But Christine has had a very difficult year – and she has lost the ability to put on the smile. It is gone. Continue reading here

Monday, October 10, 2016

And the Wedding Cake Was Wonderful Too

Well. Today I am completely wiped out. Seriously. But the event that caused this level of fatigue was definitely worth the time spent resting today. Check out the pictures and I guarantee you will know what I was doing over the past weekend:

Ah, yes. I love weddings, especially this one for a young lady that is part of a large family that we consider dear friends.

After the Saturday shenanigans, we were invited to have breakfast at the bride's parents home and before we ate, a private Mass was celebrated. I have never attended a Mass like this one, and it was extraordinarily special.

We gathered round a kitchen table covered with a white linen tablecloth. And the young priest, also a member of the bride's extended family, led the 12 of us in the most intimate celebration of the Mass that I have ever attended. It was amazing.

After the concluding prayers, a delicious breakfast was spread over the same white tablecloth; and we gathered around the table yet again to enjoy toast made from home made bread spread with hand-preserved huckleberry and blackberry jam; followed by eggs made to order, bacon, and fresh fruit.

What a morning feast!

What a great way to start the week!

Tuesday, September 27, 2016

I Wobble

So, y'all know that I've been locked into a fight till the death struggle with my bicycle. Which, incidentally is the cutest thing evar now that she has a basket and a bell. Cuteness aside, it never seems to fail that every time I get on the thing I come away with scrapes and bruises. 

But I'm not giving up. *strikes a confident pose with a wonder woman cape fluttering behind her in the breeze*

One of my recent tumbles off my buckin' bronco bike caused me to land squarely on my new knee joint. Was a real beaut. I was able to get up and walk around on the thing just fine and so was pretty confident that I had not injured the knee implant, but as the bruises developed and it started to swell, I wasn't so sure. So the next day I motored myself over to my doctor's office and presented myself. We had an interesting discussion that took off in a direction that I wasn't counting on. 

"Oh, my! So how did this happen?"

Dr. M is a very nice young woman who didn't know what she was in for when she accepted me into her internal medicine caseload a few years ago. 

I explained all; after which she gave my knee a very thorough examination. "I'm sure that you didn't damage your new joint at all," she said.

"I'm actually more concerned about WHY you fell." 

I fell because that's just how I roll, so to speak. 

She frowned. "So have you fallen when you were not on your bicycle?"

Of course. But I've always been fine afterwards. 

"Why do you think you have fallen when not on your bike?"

Let's see........once because I kind of missed one of the steps going from the house to the garage and planted myself face first on the concrete...."

She winced and held up a hand. "Hang on. You're falling at home? In an area that's very familiar to you?" I nodded. "How many times in the last year?"

I suppose about........three or so.

We went on to have a lengthy discussion about the zillion reasons that may be contributing to my inclination to topple over; during which I was mentally kicking myself for even allowing this particular medical can of worms to be opened. Because I knew what would inevitably follow. And it did:

"I would like you to have a further assessment of your fall risk."

(Hoo boy. Here we go, I thought.)

"I am scheduling you for a Preventing Falls class, and also for some one on one assessments by physical therapy looking at your gait and ambulation skills."

(I knew it. Drat. MORE appointments.) 

After another discussion about using hand rails, lighting up dark areas, wearing my glasses, being vigilant, blah blah blah blah blah......she finally said, "Show me your shoes."

I dutifully stuck one foot out. 

"Those knit fabric type sneakers don't provide any kind of stability for you at all. I want you to go through your shoes and either give away or toss those that don't fit exactly right, those that have high heels, any flip flops at all, and those that are flimsy and don't provide good support for your entire foot including your heels. So no slip-ons."

Curses. I saw the words INCREASED FALL RISK get typed onto my electronic medical record. 

I left grumpily, certain that she had just given me a sentence of life-wearing-awful-ugly-shoes. Like these:

However it didn't take me long to figure out that if I needed to toss a closet full of shoes, then it was only logical that a serious shoe shopping trip should follow. 

Which it did. And sorry John -- I've only just begun.....

Saturday, September 17, 2016

What Fun

Guys. I've been having such a good time helping my daughter plan her wedding. Their wedding ceremony will take place in a tiny little church up in the Cascade mountains, and her reception about ten minutes further up on the mountain. It will be beautiful.

We were scouting around the area where the festivities will take place when I snapped this photo which makes me so happy. My two son-in-laws, (well, one is almost my son-in-law) with my daughter sandwiched between them. I just love 'em all to death. Times like this remind me how good life is.

Thursday, September 1, 2016

Important Public Service Announcement

Guys. Important information regarding your personal safety: If you see these bicycles wobbling along a state park with Terese and me on the seats -- run for your lives.

So a few weeks ago, I developed a hankering for the feeling I used to get while gliding along effortlessly on my bike just like back when I was, oh......18 or so. So I asked John to pump up the tires of my bike so that I could re-live my youth. And then suggested that we take a couple of our bicycles along with us out to the coast in a few weeks. I imagined myself pedaling along, hair flying in the wind, gracefully maneuvering hills and corners with the ocean waves and seagulls adding to the picturesque scene.

Mine is the purple one. Terese will be riding the red one. 

John put on a cool bell on each of the bikes. Nifty. 

How hard could it be? I figured. And of course, as y'all know, after I got my big ol' fanny up on the bike seat and pedaled down the street I realized that it could be very, very hard. Good grief! Why do people always say that when you never forget something, they always say, "It's like riding a bike. You never forget!"

And to that I say, pshaw.

You can indeed forget. Which is what I thought as I lay sprawled out on the pavement. Lucky for me, my injuries didn't include broken bones or massive blood loss. I just got myself a whopper bruise on my leg.

John says that the only thing to do is to get right back on that thing and ride, ride, ride. I'll have to think about that. But on the off chance that I take his advice while we're out on the coast and you experience a Julia and Terese sighting? Stay indoors. Seriously.

Friday, August 19, 2016

Truth: Why I won't Apologize for Having Fun While Chronically Ill by Denise Reich

Head over to The Mighty to read this excellent essay. Thanks to the Sjogren's Syndrome Foundation's Facebook page and the reader that posted this link.

Read it -- and then go out and do something FUN without guilt. Blow raspberries at anyone who disapproves! Unleash your version of a Bratty Inner Child Julia!

I Won't Apologize for Having Fun While Chronically Ill

When I was six, I was hospitalized with Rocky Mountain spotted fever. At the hospital, I was encouraged to get out of bed, get dressed and spend as much time as possible in the playroom. I brought magazines and books back to my room to read and played with other kids who were up and about on the pediatric floor. There was a girl in the next room with leukemia, and we made faces and waved to each other through our shared window. The fact that I was able to play didn’t mean I wasn’t sick enough to be hospitalized. It meant that regardless of my illness, I was a child with the same needs and wants as other children.
Yet, with adults, the same concept doesn’t seem to hold true. Whenever ill people do — well, anything — it’s taken as “proof” that we’re bluffing about our condition. Many of us are confronted by complete strangers on a regular basis when we go out in public, on everything from using parking placards to requesting ADA accommodation at events. We’re challenged more by people we know, who should really know better.
After I became ill, I decided to go to my favorite theme park one day. I didn’t do much; it was a very sedentary experience. I posted a photo of myself on one of the rides on Facebook with my germ mask on backward, slept for days to recover from my adventure, and didn’t think much of it. A few days later, my Mom called me about it. A “family friend” had seen the photo and was furious about it. She’d apparently complained to several people that if I was at a theme park, I was obviously well enough to be working and was pulling some sort of scam. It had gotten back to my mother. Continue reading here

Wednesday, August 10, 2016

Investing in a Good Night's Sleep

My Bratty Inner Child Julia is sulking because I haven't kept my promise to write exclusively "life is so good" posts this summer. She's mad because I've written about inflammatory cytokines, and Sjogren's fatigue, and brain fog and grocery carts....well. Thinking that these topics aren't feel-good material, she's pitching a fit. So to placate BICJ today's entry is ALL GOOD STUFF.

Here goes.

When our son was born, John and I bought a new mattress and bedroom furniture. It was pretty exciting because previously our stuff was hand-me-downs and mismatched. And now? That set is 34 years old. And the bed frame and mattress was delegated to a guest room when we got a king size mattress.

The king only ruled for three stinkin' years after which it had developed two John and Julia shaped trenches. The stupid thing turned into a double hammock. John said he needed a periscope to see his alarm clock. Of course by then the warranty had expired by two years.

So we're excited this week to take delivery of a new mattress but even better -- a new bed. I can't wait to plop myself onto this beauty.

Lulu probably won't be able to jump up on this one. I think she needs one of those doggy stairs.

Happy, BICJ? Why yes. Yes we are.

Thursday, August 4, 2016

Do I Love My Fate?

Wikimedia image found here

The other day I was watching one of those PBS mystery TV shows -- you know. The kind where the main characters are some combination of an older, grizzled investigator paired with a fresh faced youngster. So in this particular episode one of the villains was an unsavory smug college student wearing a t-shirt with the words amor fati. Intrigued, I Googled the words and found that in latin, it translated to a love of one's fate: "It is used to describe an attitude in which one sees everything that happens in one's life, including suffering and loss, as good or, at the very least, necessary, in that they are among the facts of one's life and existence, so they are always necessarily there whether one likes them or not. Moreover, amor fati is characterized by an acceptance of the events or situations that occur in one's life."

(Originally attributed to Epictetus. Also attributed to Marcus Aurelius. Used repeatedly in Nietzsche's writings (some of which I'm NOT a fan). But I digress.)

I was also NOT a fan of the actions of this tv kid, but after some thought I decided that his one redeeming quality was choosing clothing that piqued my interest. After reading other philosopher's take on amor fati, I conceded that the idea of embracing an attitude of total acceptance of all aspects of my life -- both good and not so good -- would probably be a valuable tool in dealing with chronic illness. I have to admit that I still need to work at embracing all of the challenges that autoimmune disease has brought to my life.

One of the historical philosophers I mentioned above -- and here I fully admit that I'm just too lazy to go back and find out which one -- elaborated further that one's fate should be so completely accepted that you would be content to experience your life in some kind of never-ending loop; repeating your existence including every minute detail -- good and bad -- into infinity.

Hm. I'm thinking that may be taking things a bit far. I mean, it may be one thing for ME to have achieved complete zen with the events of my life, but it's another for the WORLD to have to suffer through all the events of my life. Over and over and over and over.

Did I share with ya'll yet another Julia doofus moment that fully illustrates this? No? Sigh. Well.

I was back in Wisconsin with my mom and had done a let's-restock-every-grocery-item-in-Mom's-pantry kind of shopping trip. I was standing in the store checking my shopping list and looking at the cart groaning with supplies with satisfaction when it occurred to me that after all the work of locating and loading all that stuff I deserved a treat from the coffee shop in the store before I paid for it all and then heaved it all into Mom's car. So I ordered one of those frozen coffee whipped cream thingies for myself, Mom, and her caregiver Isabel. Gee, I thought. It's really hot out there. I'd better get these home pronto before they melt.

So while blissfully sipping my frosty drink, I pushed the cart out to the car. And as I began unloading the items, I was thinking indignantly that it was just a shame that the cashiers had not put my stuff into grocery bags. My goodness -- what is customer service coming to these days? And I tsk tsk tsk-ed my way halfway through the mountain of groceries before it occurred to me that the reason my purchases were not bagged was because they were NOT PURCHASES.

Yes. I had pushed a grocery cart stuffed to its limit with valuable Gordy's IGA products right out their front sliding doors past greeters, cashiers, stock persons, and customers WITHOUT PAYING FOR ANY OF IT.


For a fraction of a nano second, I considered hastily dumping the remainder of the cart contents in the car and burning rubber out of the parking lot. But of course, reason and conscience prevailed and I shoveled it all back into the cart. When I wobbled my way back into the store though the same doors I had confidently sailed through just minutes earlier (this adventure was exhausting and I wasn't half finished yet) my arrival back into the store caused more than one set of raised eyebrows. Apparently people that steal $200+ worth of groceries rarely roll them all back into the store.

The middle aged cashier stood with her arms crossed, hair piled high on her head, chewing gum, and looked as though she belonged behind the bar of of a saloon. She calmly eyed me struggling with the cart as I reentered the store then wheeled everything to a stop before her dripping with perspiration and gasping for breath.

"Honey. I've seen everything imaginable in this store. But this is new." She cackled. "Guessing you want to pay for this stuff now?"

Please don't put me in jail please don't put me in jail please don't put me in jail... By this time I was drenched in sweat, energy spent, and didn't see a bit of humor in the situation as she and another cashier burst into laughter.

I slid my debit card through the machine and was relieved to hear,"Sweetheart, you look all done in. Let me get someone to help you load this into your car. And don't worry, we won't report this crime." She cackled again and handed me the receipt.Yeah. She definitely should be mopping a bar with a cigarette dangling from her mouth in a tavern somewhere. What a doll.

My point? If good old Epictetus was right and the universe would be inflicted with a chubby sweaty mindless grocery stealing Julia for all eternity?

Wouldn't be a good thing. More accurately, it would be impossible for both me AND the universe to love this incident as part of our infinite fate.

I think I'm going to go read about a different philosopher.

Monday, August 1, 2016

MedPage today: Fatigue in Sjogren's: A Paradoxical Response

I want to thank Dr. Sarah Schafer for essentially writing my posts for the last three days! She sent an email containing this intriguing article today. It explains a great deal of my frustration for inability of the medical community to find the cause of my crushing fatigue. Check it out:

This article is by a researcher in the UK who studies Sjogrens, especially fatigue-  Wan-Fai Ng   He found in previous study in the UK that 70 % of patients have disabling fatigue.    (My comment:  disabling can mean you need to  reduce activities,  or you are too sick to work, or you are profoundly debilitated-  all of those in the 70 %) 
It came through on MedPage today, titled:

Fatigue in Sjogren's: A Paradoxical Response

Decreased proinflammatory cytokine levels tied to higher levels of fatigue

Excerpts with Main points: 
Inflammation has been postulated to have a central role in fatigue associated with chronic autoimmune disease as part of a phenomenon termed sickness behavior.

"Sickness behavior is considered an evolutionarily adaptive behavioral response to infection facilitating speedy recovery, minimizing energy expenditure, and reducing environmental risks when an organism is in a weakened state during and following an infection," Ng and colleagues explained.

Because this response is mediated by proinflammatory cytokines, it has been assumed that inflammation would be responsible for fatigue in chronic disease.

However, the finding that proinflammatory cytokine levels were lower among patients with high levels of fatigue "does not ... support a simple concept of higher levels of inflammation leading to worse fatigue,"  

Previous research has found that inflammatory burden does not necessarily correlate with fatigue scores in diseases such as Sjogren's syndrome, rheumatoid arthritis, and lupus, "suggesting that there may be a complex range of positive and negative feedback loops contributing to fatigue in autoimmune conditions," they wrote.

As to why lower levels of inflammatory markers would be associated with worse fatigue, the authors suggested that there might be a negative feedback loop where inflammatory markers are reduced but fatigue persists.

"Thus, although fatigue is induced by proinflammatory cytokines as part of an 'adaptive behavior response,' which has evolved as a protective motivational state during and following an infection, a potentially maladaptive immune response may contribute to the maintenance of persistent fatigue after clearance of a pathogen or in a chronic inflammatory state," Ng and colleagues wrote.

In a healthy patient, they explained, exposure to an infectious agent leads to an immune response triggering inflammatory pathways resulting in sickness behavior, followed by restoration of immune homeostasis and normalization of the behavioral response. But in a patient whose immune response is dysregulated, the anti-inflammatory response becomes excessive and continues to upregulate the immune system "in a pathological feedback loop," and the sickness behavior persists.

This reinforces that there remains  no clear explanation for Sjogren’s fatigue.  There are no measurements to prove how bad you feel.   Some people who are quite sick with organ involvement feel better than others who have “uncomplicated” Sjogren’s.  So here you have another reason for feeling awful and hearing  “you don’t look that sick” comments from medical providers or lay people.

You can read the complete article here.