Twenty Years Later

We have lived in our house for almost two decades.

Wow.

I'm happy about that, really. I love feeling connected to the place in which I live. I've seen our home grow from an empty hole in the ground, a stack of lumber, and a cement truck into a genuine PLACE.  A destination. A sanctuary.

I remember feeling perplexed as I looked into the excavation for our foundation, noting the tracks in the dirt clearly made by a bicycle. And then being genuinely amused as my brand new next door neighbor Bev came trotting over to apologize for her son's adventures in our new basement.

I think I'll like her, I thought. I hope she likes me. Wonder if we'll be friends? With that little exchange, the infamous Julia/Bev adventures began.

Back then, our neighborhood was populated with an abundance of kids of various ages. What a hoot. I documented one of my favorite neighborhood kid adventures in one of my earliest posts here on Reasonably Well:

I have come to expect certain usual sights from my perch on Couch, but I have also seen some spectacularly entertaining things on occasion.
     I think my favorite of these was provided by the two boys that live across the street. They are active, bright, and very inventive young teenagers. One afternoon, after comfortably arranging myself for a snooze, I opened one eye when I heard a really strange metallic rumbling noise. A shiny metal trash can was lying on it's side on my neighbor's driveway. I sat up to look closer to identify the round plastic thing sticking out of the opening in the can. A bike helmet? Yes, it was, and it was attached to one of the neighbor boys. The can and it's contents were surrounded by three other boys who were busily coaching the kid in the bike helmet. I couldn't make out what they were saying, but it involved a great deal of gesturing and arm waving.
     A second later, the can got a shove, and it went rumbling down the steep incline of the driveway, with the boys running and laughing alongside. It wasn't clear whether the kid inside the can was joining in on the laughter. The can clanked down the drive, across the street, and onto an asphalt walking path, where it took another lengthy downhill roll.  I lost sight of the bike helmet as it crested the hill and made it's way down the path.
     I wondered if I should call 911 immediately. I pried a cat and one of the dogs off my lap and sat up. The laughing and rumbling returned, and I saw all of the boys, bike helmet kid included, run back up the driveway dragging the dented garbage can.  What a relief to see that all limbs involved seemed to be attached and working properly.
     I settled back to resume my nap, but after hearing new set of sounds from across the street, my curiosity got the best of me. I had to take another look. There seemed to be a flurry of activity and a new round of discussion as the can was lifted ONTO A SKATEBOARD and a different teen was strapping on the bike helmet.
      I pulled the shade down over the window.
     Yes, all parties involved survived. Kids, Couch, and me. 

Ahhhh. Such good times. Fast forward to present day when these boys and their family will join ours around the dinner table this Easter; all grown into intelligent and adventuresome adults. Who, incidentally, remain remarkably un-damaged. Thank God.

So over the years, all of these kids, mine included, had the nerve to grow up and become wonderful adults with interesting lives all of their own. Which left our neighborhood so......quiet. It's seemed like forever since the street has been littered with skateboards and jump ropes and winter snowmen. Until last year when a delightful young family with three little girls AND A SCHNAUZER bought the house at the end of the street.

I hoofed it over there with a welcome-to-the-neighborhood plate of goodies and card immediately. We don't know them well, unfortunately. As is typical of most young families, their lives are crazy busy. We wave at each other as our cars leave the driveways, and it appears that their girls are enthralled with our Christmas light show. But they have their own jobs and friends and school and involvements which understandably don't include the '50 something lady and her husband and yappy dog that live on the other end of the street. The little girls are such fun to watch as they come and go.

I don't want to appear creepy by my observation of their antics; but for someone who spends a great deal of time at home I just find it fun to have the quiet interrupted by the sounds of kids playing, and riding their bikes, and, well, just being kids. So I am content to remain on the periphery of their awareness.

Yesterday, Lulu and I were off on our morning stroll. It was a beautiful day.

As I passed the end of our street, I was delighted to see the sidewalk in front of their house covered with little-girl chalk drawings: butterflies, hearts, hop scotch squares, and one forgotten chunk of robins egg blue lying on it's side. I couldn't resist squatting down and adding some artwork to theirs.

Lulu drew it, of course.

Schnauzers aren't particularly good artists.

I wonder if the girls will notice?

Dark Chocolate Easter Bunny: It's Medicinal

Just in time for Easter -- this infographic courtesy of Hershey's.

Real Mobility

Wow. Infinite awesomeness: the Kenguru wheelchair-accessible electric vehicle. Found on The Kid Should See This:

Made especially to give wheelchair users a way to drive independently, the Kenguru Wheelchair-Accessible electric vehicle goes up to 25mph with a range of 45-60 miles, perfect for driving to the grocery store or for meeting up with friends at a local restaurant. With an estimated 1.7 million wheelchair users in the US, this zero-emission concept car could make a difference for many people when it goes into production.

In Search of Happy

So I was sitting here thinking about what the subject of today's post should be. I'd really love to be able to share a hilarious anecdote involving some kind of weirdo Julia et al antics, but alas. I can't.

This is sad.

After indulging in a period of gratifying "woe-is-me-my-life-is-so-boring" musings, it has occurred to me that the reason my life seems so boring lately is because IT IS BORING.

Which is even more sad.

I realize that my weirdo adventure wings have been clipped over the last three weeks by a nasty group of germs that have populated my innards and confined me to the house. Thankfully over the last few days I'm feeling myself slowly return to - hm. I was going to say "normal", but I don't think I know what that is anymore. I suppose what I'm trying to say is simply that I feel better. And that it's possible that there may be a few less boring days ahead.

This is NOT sad.

"Not sad"? Instead of "HAPPY"? Oh, Julia, girl.......

I realized that I was in dire need of an attitude adjustment. I tried a few of my usual spirit lifting strategies: looking at dopey YouTube videos, sipping a cup of fully caffeinated coffee, reading a few chapters of a book; but still felt stuck in a blue funk. I irritably put my laptop aside and began to shuffle around the house. After a few minutes, I realized with surprise that I had grabbed my camera in my wanderings and didn't even notice it. So I slid the switch to "on" and began to idly snap pictures.

As I clicked my way from room to room in the house and then out to the deck, I felt my attitude begin to change.

Whoa. It's a beautiful day, I realized.

Our Easter Ham-O-Rama is only a week away. I LOVE the Ham-O-Rama.

It won't be long before we can head over to the Saturday market and buy some enormous flower baskets to hang on the front porch.

Pinky! You've survived yet another winter. Looking good, buddy.

Guess I've survived another winter too.

I looked affectionately at my ancient DSLR camera and thought yet again how comfortable and right it feels in my hands. Goodness knows, Canon has spent plenty of time with my nose mushed up against it's viewfinder and I've spent countless hours downloading and editing it's images.

What fun.

I have no illusions of grandeur about the quality of my photography. It is and probably will always be of a pure amateur quality. Which for me, is entirely beside the point. I enjoy capturing those day to day images of the people and things and surroundings that I love.....and that makes me.....

......happy. HAPPY. Ahhh. There's my attitude adjustment.

I'd Want a Big Chocolate One, Of Course.

@LAlupusLady recently sent this intriguing tweet out on Twitter:

Does anyone "celebrate" the day they were diagnosed w/ #Lupus?
33 years ago...today at a 3PM Drs. appointment heard "you have Lupus."

Hm. I had to think about that. Do I "celebrate" the date of my Sjogren's diagnosis? My first reaction was, Heck NO. I don't "celebrate" anything about autoimmune disease. I don't even know the actual date of my diagnosis. I suppose I could look back in my records...

But.

After a little reflection on how stressed I was for those months before my diagnosis, I would grudgingly admit that while my diagnosis was not something to celebrate, it certainly was a relief to have a specific name for my problems.

I never thought about commemorating the day of my diagnosis. Did you?

Hey. If marking my diagnosis day means cake......I'm all for it. Like this one:

found here.

I wonder if it comes in a gluten and dairy free, low-sugar version?

Sjogren's Quarterly: Treating Sjogren's - The Future

Over the years, as I've read the results of (far too few!) studies looking at various aspect of Sjogren's syndrome, the study authors conclude with a phrase similar to this one: more research needed. 

No kidding. It's disheartening to feel as though very little progress is being made in the diagnosis and treatment of our disease.

I was encouraged, however, as I read the Sjogren's Quarterly newsletter from the Sjogren's Syndrome Foundation Winter 2015 edition. It contains a piece entitled Treating Sjogren's - The Future! which reported progress made in increasing clinical trials, targets for new therapeutics, and validation of outcome measures for Sjogren's. Here's a few excerpts:

By Theresa Lawrence Ford, MD, Chair SSF Clinical Trials Consortium:  

While many barriers exist in getting new therapies to market in Sjogren's, tremendous progress has been made or is underway. Several factors are contributing to the increased interest and subsequent plans for clinical trials in Sjogren's, including the development of biomarkers; novel diagnostics that are coming onto the market to speed up and increase the precision of diagnosis as well as the numbers of those diagnosed; internationally-accepted classification criteria becoming finalized over the next year; and internationally-accepted outcome measures finally being in place.  

By Denise Faustman, MD, PhD:

Sjogren's is poised to benefit from the new era of drug development that we are entering for many diseases with the increasing possibility of tailoring therapies to a specific patient's needs. Therapies of the future most likely will be highly individualized by targeting specific signs and symptoms of Sjogren's...........In addition to new biologics currently under investigation, a combination or sequential use of different therapies may be found most efficacious. As mentioned earlier, a study published in 2014 by Salvatore De Vita et al using belimumab followed by rituximab demonstrated initial success and projected potential long-term benefits. We look forward to a better future in which more studies will expand our knowledge of the science exponentially and lead to more precise biomarkers and potential targets for therapeutics. That future is not far away. 

And this by Raphaele Seror, MD, Steering Committee, EULAR Outcome Measures in Sjogren's Syndrome:

Clinical trial design has made a major leap forward with the final validation of the EULAR-endorsed outcome measures known as the EULAR SS Disease Activity Index (ESSDAI) and EULAR SS Patient-Reported Index (ESSPRI). The validation study, published on March 2014, concludes a nearly decade-long effort by researchers to develop outcome measures that could be embraced consensually by the international community at large. The ESSDAI includes the 12 following domains: constitutional, lymphadenopathy, glandular, articular, cutaneous, pulmonary, renal, muscular, peripheral nervous system, central nervous system, haematological, and biological. The ESSPRI includes dryness, pain and fatigue that were considered by patients as the most important areas for needed improvement. 

You can read the article in it's entirety here which includes citations of the studies referenced, however keep in mind that this periodical's targeted audience is rheumatology health care professionals and the language and terms used reflect this.

I found the section by Dr. Faustman entitled Targets for New Therapeutics - The Science particularly interesting. In it, she describes potential therapies under investigation or being considered for use in the treatment of Sjogren's syndrome:

B cell inhibitors or modulators

• rituximab
• epratuzumab

BAFF/BLyS targets

• belimumab
• VAY736

T cell regulation and cytokine targets

• abatacept
• baminercept
• BCG vaccine
• tocilizumab

Genetics and epigenetics

Hope for more research resulting in increased knowledge and improved treatment of Sjogren's syndrome is a very good thing. 

It's Contagious

Oh, man. I feel terrible. Terribly guilty, that is.

Yes, I am still recovering from the flu but the actual reason that I'm feeling terrible is that it appears John has caught my germs, poor guy. I've tried to contain my nasties by sneezing into my elbow and using disposable tissues and covering my cough and we're running the dishwasher on sanitize, but I suspect that after two weeks of this stuff, we've reached some kind of tipping point ratio of people to viruses inhabiting our house. So it was probably inevitable -- John would have to join me in my little Kleenex world.

He's soldiering on, however. Even though he's staying home, he's still working from his laptop and conducting his meetings via conference calls in-between sneezes, coughs, and nose blowing. What a guy. In-between work duties, he puts his feet up to recharge.

Lulu's all confused. "Wait. Aren't YOU the one that takes afternoon naps?"

I've decided that it's time for me to kick into solicitous wife mode. Along with keeping John supplied with soothing hot beverages, tissues, and the usual sickie stuff, I'm thinking that it's important to attempt to supply sources of therapeutic laughter too. Like this:

How could you not feel better after watching that?

AARDA's National Survey Examines Prevalence of Autoimmune Fatigue

In a story released yesterday via Newswise, the AARDA announced results of a large national survey:

“In this busy, busy world, it’s normal to be tired, but the kind of fatigue autoimmune disease patients suffer from is anything but normal,” said Virginia T. Ladd, President and Executive Director of AARDA. 

“The overwhelming response AARDA received to this survey shows without a shadow of doubt that fatigue is not a ‘fuzzy’ symptom, it’s real. Yet, for too long, it has been ignored and/or misunderstood by the medical community and the public at large. It’s time we bring more research funding to this issue to advance understanding and effective treatments for fatigue.”.....continue reading here. 

I couldn't agree more with both Ms. Ladd's quote as well as the survey findings:

Fatigue described as “profound,” “debilitating,” and “preventing them from doing the simplest everyday tasks,” is a major issue for autoimmune disease (AD) patients, impacting nearly every aspect of their lives. It affects their mental and emotional well-being and their ability to work. And while most AD patients have discussed their fatigue with their physicians, many have not been prescribed treatment for their fatigue.

Profound. Debilitating. A major issue.

Yup. Sounds about right. It IS high time that more attention and research is directed toward this most difficult aspect of autoimmune disease.

Dumb Stupid Virus

Oh my gosh. The package says "extra strong" and that is_not_ an exaggeration.

All of your wishes for a speedy recovery are very much appreciated; and I'm glad to say that I AM slowly shaking off this dumb stupid virus. I'm behaving myself in my usual recovery-mode manner: grumpily and with enormous impatience.

I'm armed with my inhalers, cough drops, gallons of soup, and an old school style steam humidifier; I have an enormous stash of tea at the ready, my schnauzer at my side and my laptop on my, well.....my lap. So all I have to do to get over this thing is to behave myself.

Which, as we all know, rarely happens.

Whoever invented lotion tissues was a genius. 

Isn't it so weird how Sjogren's dryness complicates recovering from a respiratory infection? At one end of my airway, my nose runs like a faucet. Where DOES all this watery mucous come from anyway? Meanwhile, my mouth, throat, and lungs feel dry, dry dry; which seems to trigger an unrelenting harsh cough. And don't even get me started on the effects of antihistamines on the whole situation which although may slow the nose drips; magnifies dryness everywhere else. Not to mention also amplifying the symptoms of restless leg syndrome.

Wah. Wah wah wah. I'll spare y'all a lengthy litany of my other symptoms.

John drove me down to the local drugstore on Saturday. I needed to stock up on cough drops and figured it would be an exciting outing. As I came through the front doors, the young gal at the cash register watched me shuffle down the aisles (literally shuffling - I stuck a pair of too-big-for-me John's shoes on my feet because they were conveniently sitting by the door) while coughing and sniffling into my sleeve.

I was a thing of beauty. Not.

Bless her heart, by the time I found what I needed and was ready to pay, the cashier had coupons for cold and flu products at the ready. I advised her to decontaminate the general vicinity after I left the store. Seriously.

I have to keep reminding myself that although I feel deeply and profoundly sorry for myself as I hack and snort my way through the week, that whatever discomfort I may feel pales in comparison to the two month recovery from my laminectomy last fall. It helps to keep things in perspective.

Time Out

Hey, guys. You've seen those commercials for cold/flu products? Well, right now I look and feel like the pathetic "before" person.

Yeah. Not good. 

I'm taking a few days off until my head clears and I am able to put a coherent thought or two into writing. 

See y'all Monday. Or Tuesday, or.....whenever I crawl back out of bed. 

Behave yourselves until I get back. 

Julia: ONE Bacteria: ZERO

I'm not certain that Escherichia coli is the culprit this go-around, but it has been in the past. 

Well, guys. It's been a weird week, but things are looking up. I actually took a shower today.

Just when I thought I'd climbed up out of a deep post-travel fatigue hole, last Tuesday I found myself in my internal medicine doctor's office carrying on about my latest ailment.

I don't know exactly what's going on. I just know something's not right. I have a strange burning pain in my lower abdomen and I feel crummy.

Bless her heart; my internal medicine physician Dr. P., a petite woman about my age, has been so patient and resourceful with me over the past several months as she and Dr. Young Guy worked together to find some relief for my restless leg and peripheral neuropathy issues. And so she once again sat across from me and listened to my complaints with attentiveness and concern. After a physical exam which included a thorough palpation of my abdomen, she sent me for an abdominal x-ray, some lab work, and a urinalysis which meant just a quick walk down the hallway. After my tests were completed and I dutifully peed in a cup, I returned to my exam room. I was sitting there thinking that it was a real waste of lab time and money doing a U/A since I was certain that there couldn't be anything wrong there.

Dr. P. bustled into the room and took a seat on her rolling chair next to the computer. "Let's pull up your x-ray and take a look at it together. C'mon over."

I thought that was pretty cool that she wanted me to see my film first hand even though she was giving me far too much credit in my x-ray evaluation skills. I'd seen my share of chest x-rays way back when I was a dialysis nurse, but abdomens? Not so much.

"Look at this....and this.....and this," she said and pointed out various images. "I think your stool pattern looks very normal."

Yippee, I thought. I have an impressive stool pattern.

"I'm sure you know that means you probably don't have any kind of obstructive thing going on. I'll make sure this is reviewed by a radiologist but I'm pretty comfortable telling you that your x-ray is normal."

Cool.

"Let's see if your U/A is back......"

I was about to say that I didn't have any bladder symptoms when she exclaimed, "Aha!"

What?

"Take a look. Your leukocytes and nitrites are sky high. You, my friend, have a roaring urinary tract infection."

Whoa! But....but....I don't have any of the usual cystitis symptoms like burning or frequency or any of that stuff.

"Being immunosuppressed by your Cellcept and prednisone probably masked the usual symptoms. I wonder if the infection has actually moved past your bladder and is involving your ureters and possibly nearing your kidney which could account for your abdominal pain. I'm glad you came in when you did or things could have become far more serious."

Me too!

She typed a prescription for an antibiotic into the computer and gave me the usual instructions regarding increasing fluids and getting some rest, and asked me to contact her if I wasn't feeling better in a day or so. After thanking her, I left her office and headed toward the pharmacy feeling a strange mix of relief and uncertainty.

I was relieved because I had an answer to why I was feeling so crummy; but uncertain and frustrated because I thought I knew my body so well and yet I had completely misinterpreted the signals it was sending me. Great, I thought. Yet another example of how quickly weirdo stuff can happen when I'm taking these kinds of drugs.

It was a good reminder of my increase in susceptibility to infection when immunosuppressed.

So here I am chugging water and unsweetened cranberry juice (zowie - that stuff is tart) and marveling yet again how a bunch of teensy little microorganisms can wipe big old me out for a whole week. But I'm getting my revenge. Every time I swallow my Cipro, I think, Take THAT you lousy little critters. DEATH to you all! Bwahahahaha! 

It appears that I may have lost one battle, but I'm winning the war. Yesssssssss.

Smithsonian.com: Watching Cooking Shows could Make You Fat

Put down my remote? This one?! 

Well, dang.

When I have the need to spend time resting, I like to channel-surf on the TV. I like old movies, Mariners baseball games, news, and also the Food network. Yeah. I really enjoy watching those chefs whip up spectacular gastronomical delights. Which always whips up a corresponding appetite. So I wasn't surprised at all to see this:

Watching Cooking Shows Could Make You Fat

Put down the remote—new research links cooking shows, higher BMI

By Erin Blakemore

smithsonian.com

Read more here. 

You’ve heard it before—cooking at home saves you money and can save you from the gigantic portions, high calorie counts and expense of eating out. But don’t be so quick to flip to your favorite cooking show for inspiration. New research suggests that cooking shows (which are watched by up to 91 percent of food shoppers) could make you fat.

A team of researchers from Cornell University surveyed 501 females between 20 and 35 years of age, asking questions about cooking habits, weight and height, and how respondents found new recipes. They learned that when it comes to cooking shows, there are two kinds of people—“viewers,” who merely watch food on TV, and “doers” who try the recipes they see on cooking shows. The study found that “doers” had higher body mass index (BMI) than those who merely viewed—and that, on average, they weighed 11 pounds more than their non-cooking counterparts.

The Guardian: Salt and Autoimmunity

"Salt shaker on white background" by Dubravko Sorić SoraZG  on Wikimedia

The Guardian recently published this intriguing article that looks at another potential autoimmunity trigger: Salt: no great shakes for your health. Here's an excerpt but head over there to read it all.

......Over the past 30 years, autoimmune disease has overall risen by between 5% and 7% a year. The increase can’t be explained by genetics – our DNA hasn’t changed that rapidly. Researchers have suggested several possible explanations, including environmental toxins, smoking, low levels of vitamin D, and certain infections. But none of these theories has provided an adequate answer. 

“Salt could explain a lot of this mystery,” says David Hafler, professor of neurology and immunobiology at Yale University, and one of the first to make the connection. He notes that autoimmune diseases have increased most in developed countries, where salt consumption is highest. Continue reading here. 

Huffpost Lifestyle: #Hospitalglam Matters Because My Appearance Doesn't Reflect the Severity of My Illness

Yesterday, Huffpost Lifestyle published an excellent piece written by Jade Hamnett highlighting invisible illness and the #Hospitalglam tumblr project initiated by Karolyn Gehrig. Check it out:

Karolyn Gehrig, like myself, has Ehlers-Danlos Syndrome. It's a genetic condition that's caused by a fault in the connective tissue - the stuff that basically holds us together. While the condition has various types, there are some symptoms that are common across the Ehlers-Danlos spectrum. It's usually incredibly painful, exhausting, and impacts every part of the body from the joints to the organs. And there's no cure. Many of us spend endless time in and out of hospital.  

Last April Karolyn tweeted some selfies. Her and everyone else, right? But her photos are very different to the usual backgrounds of partying and having fun with friends. She's framed by treatment rooms, face masks and the wires attached to her body. continue reading here.

AARDA: The State of Autoimmune Disase

Will you be in the Washington DC area on March 23rd? Check this out: the AARDA recently tweeted information regarding an important upcoming event.

Newswise — DETROIT, March 12, 2015 – March is National Autoimmune Disease Awareness Month 2015. 

To mark the annual event, the American Autoimmune Related Diseases Association Inc. (AARDA) will host The State of Autoimmune Disease: A National Summit at the National Press Club on Monday, March 23, 2015. It will be held in the Holeman Lounge, NPC, 529 14th Street NW, Washington, DC, from 9:00 a.m. to 4:00 p.m.
The summit will bring together leading experts in research, environment, advocacy and patient issues to share the most current trends in autoimmune disease (AD) research on potential causes/triggers, diagnosis and treatments, among others. Panels will include: 

● Autoimmune Disease Research: A View from Academia, Government and the Private Sectors
● Autoimmune Disease and Fatigue: What’s the Connection?
● Autoimmunity and the Environment
● Top Autoimmune Advocacy Issues for 2015
● Patient Perspective: Getting an Autoimmune Disease Diagnosis 

During the Autoimmune Disease and Fatigue panel, AARDA will release the results of a new national survey of AD patients that examines the impact, if any, that fatigue – a largely unrecognized AD-related symptom – has had on their lives. 

Award-winning American writer, poet and editor Meghan O’Rourke will serve as luncheon keynote speaker. O’Rourke will share her own personal story with autoimmune disease and her struggle for a correct diagnosis, which she first detailed in a moving account in The New Yorker. 

Tickets are free and available on a first-come, first-serve basis. Please RSVP by Monday, March 16 to: https://aardasummit.eventbrite.com.

A Guest

My friend Susan and her family are gallivanting around for the next four days, so we've inherited Lulu's BFF Skippy for the duration.

 And although there's been plenty of running and chasing and barking, there's also an abundance of competition for toys and my attention.

Lulu is a real drama queen when Skippy has a toy that she would rather have. Which means whenever he has any toy.

Lulu's all, "Sure, smile for the camera, ol' Skip, ol' buddy, ol' pal - while I snag the chewy bone you've just been gnawing on."

"Mooooooom! He's doing it again!"

Heh heh, says Skipperroo.

In spite of the doggie bickering, this is how Lulu will look on the day that Skippy heads for home:

Sunday Smile

The Great Food Experiment Comes to a Close

Oh, yeah. An abundance of fruits and veggies will always be on my menu. 

I'm sorry, Dr. Myers. I really am. I gave your autoimmune protocol diet the old college try for 21 days. John and I cleaned out our pantry and stocked the house with foods allowed on the diet, and we followed the suggestions very closely. I know that I promised myself that I'd stick it out for thirty days, but truth be told, I was feeling pretty miserable.

And I figured that feeling miserable was not one of the promised effect of following the diet.

Yeah. My GI tract was pretty unhappy. Living on nothing but an extremely limited list of vegetables, fruits, and meat was giving me indigestion and um...well, let's just say that all those veggies went out almost as fast as they went in.

So after three weeks, I decided that it was time to put an end to the experiment. I didn't want to throw all caution to the wind and begin to eat anything and everything, though. So I thought I'd begin to reintroduce specific foods and judge my body's response. I began by including beans and nightshade vegetables.

Yum. Homemade vegetable soup with tomatoes and navy beans magically soothed my innards beyond my wildest expectations. Ahhhhh.

After a few days, I added some non-gluten grains; and added gluten free noodles to my soup. Delightful. Happy GI tract: happy Julia.

Feeling pretty smug, I then headed over to my dad's 90th birthday party extravaganza. It was a four day family reunion, and although I resolved to be very careful about what I ate, I found myself tasting this and that. Overall, though, I tried to be careful. Ah, but the very last day was my total undoing.

Bless her heart, Mom tried to accommodate my dietary restrictions but she really didn't understand; and as we sat down to have coffee with my parents before we left for the airport, she pulled out a platter of her home made, warm, gooey, caramel-laden, cinnamon-y, butter and cream filled, gluten choked......

caramel rolls.

[Insert doomsday music here]

Yeah. I was a gonner. I was tired, I was hungry, and the rest is history. So was about a third of the platter of rolls.

As I crashed big time over the past several days, I'm left wondering how much of my flare was due to pushing my energy limits beyond my capability, and how much was due to that last day of dietary disasters.

Sigh. Who knows? Will I ever know?

I've decided that I'm done listening to anyone else except my own body with respect to my diet. I've read a zillion books and another bazillion websites and watched a gazillion DVDs which has left me completely confused -- but this much I do know: When I eat lots of fruits, vegetables, beans, high quality protein, and some non-gluten grains, my innards feel healthy and happy. I also need to avoid dairy, refined sugar, and wheat. So that's what I'm going to do.

Done. Boom. The agonizing over every morsel on my plate is so OVER.

I'm grateful that Dr. Young Guy gave me this wise advice on my last visit with him during which I asked about following an autoimmune diet protocol:

"Look, Julia. Eating lots of fruits and vegetables and high quality protein is great. I fully support eating a healthy diet. My only concern with following a very restrictive, strict protocol is that if you don't get the results that are promised, then you'd feel guilty or concerned that you didn't do something right and that you failed somehow. You don't need that kind of guilt or pressure." 

Thank you, thank you, thank you, Dr. YG. You're right - having autoimmune disease is hard enough without beating up on myself over every dietary choice that I make.

All in all, I'm glad that I made a significant effort to participate in an elimination type diet, however. I learned a great deal about what foods I do and don't tolerate, and more importantly: which foods contribute to a feeling of satiety and overall good health.

What an experience.

SSF Blog: What is a Sjogren's Flare?

Since I seem to be experiencing a whopper flare, the latest excellent post from the Sjogren's Syndrome Foundation blog is timely. It's entitled "What is a Sjogren's Flare?" and can be found here.

Medical dictionaries define “flare” as a sudden exacerbation of a disease. A flare is different from the day-to- day variation of symptoms that patients with chronic diseases experience and is characterized as a large and rapid increase in a patient’s usual symptoms. I like to define a flare as a sudden and significant increase in the activity of a disease. This definition allows us to use quantitative measures of disease activity to compare levels of disease activity from one point in time (e.g. baseline) to another (e.g. flare).  

Several measures of disease activity have been developed for Sjögren’s. The two most promising are the European League Against Rheumatism Sjögren’s Syndrome Disease Activity Index (ESSDAI) and the European League Against Rheumatism Sjögren’s Syndrome Patient Reported Index (ESSPRI). The first is a tool that measures disease activity from the physician’s perspective in the many organs and systems affected by Sjögren’s. Continue reading here. 

The SSF's suggestions for healthy strategies during a flare are very good and I plan on incorporating all of them into my daily routine. But I think silly animal videos provide equally therapeutic treatment:



Best. Video. Ever. I feel better already.

I shouldn't be surprised

...but I always am at how much rest I require after traveling. Good thing Lulu is such a good napping buddy.

 

Lulu likes to bring doggie snacks to bed. Now if I could just teach her to chew quieter I'd get more sleep.

See y'all tomorrow. 

Harvard Health Publications: 12 things you should know about common pain relievers

Ibuprofen molecule found here. 

Ouch.

More often than not, when I've overstepped my energy limits, I pay the price in fatigue and pain. So I crawl into bed and pop a few NSAIDS. My drug of choice these days is ibuprofen. A dose or two seems to take the edge off the muscle soreness and generalized aches so that I can sleep and renew myself.

Sound familiar? Do you take NSAID? If you do, take a look at this January 26, 2015 piece in Harvard Health Publications entitled "12 things you should know about common pain relievers" found here.

Once upon a time, easing pain was relatively simple: take two aspirin and call the doctor in the morning. Now there are many pain relievers to choose from (see “Pain relievers at a glance”). 

Willow bark was one of the earliest painkillers. Extracts or teas of willow bark have been used to treat fever and pain for more than 2,000 years. Unfortunately, the active ingredient, salicyclic acid, is very hard on the stomach. In 1897, a German chemist working for the Bayer company found a way to modify salicyclic acid so it was less irritating to the stomach. The compound he created, acetylsalicyclic acid, was called Aspirin. It remained the premier over-the-counter painkiller until the development of acetaminophen in 1956 and ibuprofen in 1962. Since then, more than a dozen others have come onto the market. Continue reading here. 

Remember: these drugs are meant to be used on an occasional basis. If you find the need to take them with any regularity, discuss this with your doctor.

We all know the drill

Yep. It's the same old story. After this: 

....and this:

...comes this:

ZZZZZZZZ...

See y'all tomorrow.

Heading for Portland

I'm on my way home today We are taking a little puddle jumper into Chicago, and then I can settle in for the long non stop into Portland. 

I have purposefully burned my energy candle at both ends over the weekend visiting family from one end of the state to the other, and although it was wonderful, I will be glad to be home. In my own bed. Looking at the insides of my eyelids for a few days. Ahhhhhh...

But it was worth spending the energy. I don't know how many more birthdays Dad will have, so each one is special. 

Wave if you see me in my airplane zooming Westward! I will be the lady in a window seat snoring. 

90 Looks Great on Dad

My dad turned 90 this week, and in spite of his protestations, we had a weekend long birthday party. Which he thoroughly enjoyed. Especially when he opened his gift -- his very own drone. 

Not kidding. He loved it. 

 Looking good, Dad. 

Family Time

I love the way a lake looks all frozen and snow frosted. As you can probably tell, I am visiting the folks. I will only be able to post from my phone for the next few days, so my posts will be brief and probably weirdly timed. See y'all tomorrow, or whenever. 

Yep. That's Brain Fog

I love those Savage Chickens. Not sure brain fog is what Doug Savage was thinking about when he drew this cartoon, but I think it's pretty accurate:

Autoimmune Awareness Month: As My Body Attacks Itself

found in Kelly's blog post, and here. 

I can't think of a better way to kick off March's Autoimmune Awareness campaign than to read this insightful post from Kelly Morgan Dempewolf PhD, author of the book "As My Body Attacks Itself" AND the blog with the same name:

.......Clearly there needs to be increased awareness with medical professionals about the implications of chronic, invisible, fatigue-inducing diseases have for our lives.  But how can we get there?  Where can they get these awareness-gaining experiences?  How can we get them to gain this awareness?  (Notice I don’t say “understand” as I truly don’t think people can “understand” what it’s like without living it, but awareness and empathy are things I think we can impact). 

Most of them aren’t listening to individual patients to gain the awareness – I’m absolutely certain I had no impact on Dr. C’s awareness as he shook his head laughing at the silly woman that said she felt fatigued with 8-10 hours per night of sleep plus naps most days.  So clearly we can’t rely on their one-on-one experiences with their patients to give them this awareness.

Head over to her blog to read it all, and take time to click through to her excellent links.

Sarah Beth RN: Being Sick Changes You

Image of Sarah found here. 

Take some time today to read an incredibly powerful post by Sarah Beth Cowherd, author of the SarahBethRN.com blog. About Sarah:

As a young nurse in 2011, Sarah Beth Cowherd, RN began blogging about her experience in healthcare. She wanted to  explore how a new generation of nurses were changing the face of healthcare through the use of technology and social media.

Soon after launching SarahBethRN, Sarah developed a rare autoimmune disease called CIDP and autoimmune autonomic neuropathy – her primary diagnoses amongst a lengthy alphabet soup list of others. Overnight she went from being a vital, healthy, athletic, University of Virginia graduate and full time cardiac nurse to a young woman with a severely debilitating illness – now facing healthcare from the opposite end of the stethoscope. Thus, began the blog’s morph into a documentary of experiences as a patient with a chronic disease – and a persistent search for answers based on the premise of trusting instincts, questioning everything and maintaining an unfailing hope and faith that a cure IS around the corner.

Her most recent post, Being Sick Changes You, was exceptionally moving:

Being sick changes you. 

For a host of different reasons, I’ve caught myself daydreaming recently–remembering moments in my pre-sick life where I felt normal. My sense of normal was pretty ridiculous. I used to travel a lot. 

I’ve been white water rafting on the Nile River in Uganda. 

I went “surfing” off the Pacific coast of rural Nicaragua. 

Spent the night in the executive lounge in the Amsterdam airport. 

Strolled the tea fields outside Nairobi, Kenya. Continue reading here. 

Gosh. This young woman has had an amazing amount of experiences in both personal and professional roles before her illness changed everything. Even though we differ  greatly in our ages, and I have led a far more sedate lifestyle, still I can identify with much of what Sarah has to say. I'm looking at what Sarah describes as "the opposite end of a stethoscope" as well. I've been changed by my disease too, Sarah....and I feel your pain.

Totally Worth It

I'm so glad that I took Canon with me on Sunday. While resting up, I get to look at pictures of the reasons why I'm totally wiped out.

Ah, but nothing that a few days of rest can't fix.

See y'all tomorrow.

I Wonder if My Legs Will Work Tomorrow......

What a beautiful day Sunday was. We decided to take a drive, and as we made our way East along the Columbia river, John casually suggested that we stop somewhere along the way and take a short hike.

My goodness. We chose a whopper of a place to walk. Take a look:

 Unbelievably, yes. I hiked high enough to take these pictures myself.

Even though I went farther than I thought possible, I didn't make it to the top. Ah, well. Perhaps next time.

Going down was much easier than hiking up.

 I love this place.