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.

Sunday, July 31, 2016

SSF: New Treatment Guidelines for Sjogren's Disease

Image found on SSF home page here. 

This valuable information from my friend Dr. Sarah Schafer arrived in my email inbox the other day.  Check it out -- and share the new treatment guidelines in the care of Sjogren's patients with your doctor:
Two key reasons that treatment for Sjogren’s is so inconsistent are lack of provider education and no standard of care.  Standard of care is a major driving force for much of medical practice in the US.  Finally, we have  the first real guidelines for Sjogren’s care.   This can be a game changer for how Sjogren’s patients are treated.   

Other common (and not so common)  autoimmune diseases have had official treatment guidelines in place for years.  There are links to them on  American College of Rheumatology (ACR) related websites.    After years of urging the ACR to take the lead on making  guidelines for Sjogren’s,  the SSF finally decided it was too important to wait any longer, and took on this monumental project.  These Guidelines were created by an army of  volunteer medical providers/experts.  It was an organizational feat that spanned several years.  Key to success was the amazing skill, leadership and dedication of Kathy Hammitt of the  SSF.   I know about this process, because I gave input to the rheumatologic guidelines as a patient volunteer.   I cannot tell you how tedious and time consuming this was.   And yet my contribution was minor compared to the professional volunteers who spent many hours and iterations on this project. 

How can these Guidelines help you?
1.        They educate providers, including PCPs,  that yes, Sjogren’s is common, serious, and needs careful management.   Sadly, many dentists and eye docs, and  even some rheumatologists are not routinely trained to manage Sjogren’s.  The Guidelines address each of these specialties.   
2.       The Guidelines help provide more consistent care. They gives patients a tool (ok, ammo!)  to ask their doctor re specific management strategies.  For example, if your rheumatologist  says “there is no proof that Plaquenil works”, and refuses to prescribe it, you can point out the recommendations in the article.   
3.       This groundbreaking work gives credibility to the importance of good clinical management of Sjogren’s.   Doctors are understandably confused about what is good practice with Sjogren’s.  These guidelines help ease uncertainty and also gives rationale so that insurers are more likely to cover treatment. 

Where can you find these guidelines?

The journal article New Treatment Guidelines for Sjogren’s Disease by Vivino et al  summarizes all 3 sets of guidelines in some detail.   You can access the article and print it out via direct link from the home page of the  Sjogren’s Foundation website.  (I am not allowed to give links on the listserv).   Give it to your dentist and eye doctor.  Give it to your rheumatologist, unless they are one of the authors or active in SSF.     You don’t have to be a foundation  member to get the link from website  and print it out.

We ARE making progress!

Sarah Schafer
So without further adieu, here is the link to the new treatment guidelines:
Frederick B. Vivino, MD, MSa,*, Steven E. Carsons, MDb,c, Gary Foulks, MDd, Troy E. Daniels, DDS, MSe, Ann Parke, MDf, Michael T. Brennan, DDS, MHSg, S. Lance Forstot, MDh, R. Hal Scofield, MDi, Katherine M. Hammitt, MA

Continue reading here

Saturday, July 30, 2016

Sjogren's Syndrome Foundation: Check out their newest awareness video

Hi guys! Yes, I am actually still around in spite of my continued lackadaisical blogging attitude. The family and I returned from a three week stay in Wisconsin several days ago, and I am still recovering. I'm busy replenishing my energy stores, slowly unpacking my suitcases, and am still scratching a zillion mosquito bites. It's good to be home. 

Mom update: She and her caregiver Isabel have become comfortable friends. Mom looks to her to finish a sentence, or explain unspoken thoughts to a visitor since they seem to have a language all their own. It's great. Although Mom has not made much progress in stroke recovery, still she seems infinitely more comfortable and content in her own home and her own bed, which makes me feel very very good about the results of our efforts to move her from a nursing home back to her own house. 

But John's mom isn't faring well these days with the devastating effects of Alzheimer's disease becoming more apparent. It was so hard for John to realize for the first time that his mother didn't recognize him. Her memory has it's highs and lows but the stress of visitors along with hot and humid weather in an un-airconditioned home taxed her limited memory and coping skills to the max. We will be making frequent return visits to both of our moms in the near future. 

In other news, the Sjogren's Syndrome Foundation along with its Chief Executive Director Steven Taylor have produced a great video to promote awareness about Sjogren's syndrome. Take a look, and share with others:

Saturday, July 9, 2016

Happiness is.........

Watching Mom doze in her favorite chair.

Wondering if the corn in the field across the road was "knee high by the Fourth of July"?

Sitting outdoors and hearing nothing but birds singing and wind chimes. 

Today has been a good day.