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. 

Wednesday, June 29, 2016

Mmm Mmm Good News

So I have not one but TWO good things to report today. The first is the tastiest thing I've discovered in a long long time. It's The Pioneer Woman's Iced Coffee, an enormous tumbler of which I'm enjoying even as I'm typing this. 

Slurp. Yum. Thank you, thank you Ree Drummond, for making my mornings far more enjoyable. 

I love this woman...........for so many reasons. Of course her coffee recipe is one of them but also her unabashedly unrepentant love of butter, sugar, and flour. And her family. 

You can read her fabulously simple but messy recipe here. Fortunately, it makes two gallons of this caffeinated perfection so you'll be washing coffee grounds from your sink, countertops, flooring, windows, ceiling fixtures.......what? You're not as hopelessly sloppy as I am?........infrequently. Depends how thirsty you are and what your tolerance for highly caffeinated foods is. 

Second happy thing? My dear friend Karen is visiting me today. Details to follow as they develop, so stay tuned. In the meantime have a wonderful day. 

Saturday, June 18, 2016

It is all for Her

I promised myself that I would only write about positive events this summer, and I fully intend to do just that. But as I relate the following story, keep one thing in mind: As far as my mother knew, everything was just dandy. I'm seriously happy that Mom had no clue about the crazy chain of events that took place in order to make her homecoming a reality.

It went like this:

At the end of May, I got the call that I was waiting for: it appeared that everything was in place to move Mom, who was living in a nursing home at the time (and wasn't liking it one little bit), back to her own home and her own bed. The bathroom was remodeled, the wheelchair ramp was built, the pantry stocked with her favorite foods, and we had hired two caregivers: one full time and live-in, the other part time on call. I almost broke my arm patting myself on my back as I drove up to the nursing home. We thought of everything! I thought. I pulled the car right under the carport in front of the building, ready to whisk Mom away. I brought our part time angel caregiver Isabel with me and we were smiling and laughing as we headed for Mom's room.

Mom greeted us with a giant smile, dressed and  ready to roll. "Going home!" she kept repeating. What fun. Isabel and I began packing up Mom's belongings as one of the nurses stepped into the room.

Funny, I thought. She seemed so pleased for Mom yesterday when I spoke to her about the move, but today she looks downright cranky..

"Stop packing your mother's things. I'm not sure that you have the right to take her home".

"SAY WHAT?! I know for a fact that Mom's doctor was in total agreement with her discharge -- and what the heck could have changed since yesterday when I asked you to get her meds ready?"

"Just don't do anything until you hear from our administrator and director of nursing." and with that she turned about face and trotted off.

I told Isabel, "Oh yeah? Keep on packing everything. We're going home. She says I can't?! Just watch me!"

Thank goodness Mom had nodded off for a nap in her wheelchair and missed the conversation.

So the next few hours were spent prying information out of the staff, which yielded this infuriating and unbelievable tidbit: A patient advocacy attorney was challenging our family's claim to guardianship of my mother.

After I regained consciousness from falling over with disbelief, I was furious. A family that included three RNs, one attorney, an engineer, a teacher with multiple advanced degrees would not be capable?

The legalities would be decided at an upcoming court date, but finally I was told I had permission to take Mom home. ".....for the time being..." Apparently the patient advocate insisted that the only safe place for Mom was the nursing home.

I pushed my anger aside temporarily and breezily told Mom that everything would be fine and finally tucked her into the car. She, Isabel, and I were thrilled to see the building where Mom had unhappily spent the past four months getting smaller in the rear view mirror as we sped home.

Mom's homecoming was everything I had hoped for. Although she didn't have all the words that she wanted on the tip of her tongue, her happiness was evident as she patted her table, her kitchen cupboards, her recliner while saying "Home!"

When we tucked her into bed that night she kept repeating, "MY bed! MY bed!" before drifting off to sleep with a very contented smile.

I was thrilled. I knew that the issues that Mom is having as a result of her stroke came home from the nursing home with her and that just being in her own home was probably not going to provide a miraculous cure, but the fact that she expressed joy, was eating again, and sleeping soundly through the night were all enormous steps toward a much more comfortable quality of life for her.

Which is what this whole adventure is all about.

So the saga continues.......

Very long frustrating story shortened: We won our case. After the advocacy attorney stated, "I have ZERO confidence in this family's ability to manage this woman's health care and finance," the judge raised his eyebrows and asked my sisters to state my and my sibling's education and occupations after which he looked skyward and said with exaggerated patience, "I want the record to state that I have COMPLETE confidence in this family."

So there, Mr. Looney Tunes Attorney who, as we later found out, wanted to gain guardianship of Mom himself and therefore would earn big bucks in legal fees as well as charge big bucks fees to manage her substantial estate. What a crook. What a Snidely Whiplash.

I am so thankful that Mom, all cute in her sweater set and necklace, slept through the entire proceedings in her little wheelchair. She would have been devastated had she heard the outrageous pack of untruths that were spouted by Snidely Whiplash bogus attorney at law, during the hearing.

So we happily packed Mom back into the car and headed back to her home to meet her fully time caregiver who had just arrived. She seemed to be a nice person and introductions were made all around to my siblings, Mom's sister, and neighborhood friends. And after the cake and coffee dishes were put away and everyone had left, she and I began to get to know each other.

I fired her the next morning. For a whole lot of reasons, some of which I don't want to elaborate upon here, except to say that after I saw her feeding Mom her breakfast wearing the same gloves that she had on her hands when she provided personal care for Mom in the bathroom..........egads. It was obvious that this person had exaggerated her abilities and had absolutely no clue how to be a safe caregiver. She was gone within an hour. Good thing she had her own car.

I was so glad that I had been there to manage that little episode, although as she drove off, I wondered who we could get to replace her. My siblings were completely in agreement with my decision although were slightly panicked: WHAT DO WE DO NOW? After closely examining my emergency travel stash of medications and determining that I could probably handle another week with Mom, I volunteered to be her stand in caregiver. But I could tell that what little energy I had was fading quickly and although I was confident in my ability to transfer Mom safely and would be able to take good care of her, I knew that I would pay for it later. Big time.

And then, the heavens opened and beautiful angelic music began to play as Isabel agreed to take the full time live in job.


I love this woman. She had already demonstrated her considerable skills as a CNA to me in handling Mom and discussing her care, so I felt an enormous sense of relief. When Isabel noticed my obvious anxiety, she smiled and patted my arm. "Jul. Everything will be OK." My goodness. She's a keeper.

So finally we arrive at the happy ending: Mom is happily living at home with 24/7 caregiving by a delightful and competent woman.

And that's what matters most. I'll see you in July, Mom.

Wednesday, June 15, 2016

What's Good for the Goose is Good for the Gander

Hey, y'all.......remember me? It's been so long since I put up a post I feel almost as though I need to reintroduce myself again.

But then, that's silly since I remember YOU. And it's good to see everyone again. So here we go:

Over the years as I've dealt with my disease, I've learned the importance of simplifying just about everything: my clothing, my bathing routine, my cooking, and anything else that could potentially sap precious energy. And as is so often the case, when one person in a marriage has a chronic illness and streamlines his or her responsibilities, the other spouse is left holding the bag with all those duties that are difficult for a chronically ill person to accomplish. Which has been abundantly obvious here at our house.

Yep. John has shouldered more than his share of the tasks around here including bringing home the bacon and caring for our home. And lately, it seems that caring for everything has consumed nearly all of his time and also HIS energy.

Not good. The man ends each day absolutely exhausted which simply can't be good for him.

It just wouldn't be fair if John risked his health to assist with mine. So we decided that we needed to apply the same principles of simplification and streamlining to preserve his energy as well. One of the choices that we made with our goal of reducing the amount of time and energy required to keep our house and yard up was to sell part of our property.

[Insert our shocked kids and friends exclaiming, WHAT?! here.]

Our home was built on two good sized city lots and it was wonderful when the kids were young. I was healthy, and we all had more time and energy to maintain that great big chunk of trees and grass.

But now,  the kids have homes of their own and aren't around to provide slave labor cheerful assistance anymore which leaves John to shoulder it all. We thought about hiring a lawn service to take care of everything, but then decided that the expense just wasn't worth it. Especially when we realized that by selling the lot, we would see an excellent return on our investment in the lot purchased so long ago.

We accepted an offer and will close on the sale in just ten days. It will be a bittersweet day: we have such fun memories of all the shenanigans that took place back there but then..............Woo hoo! No more endless pruning and mowing and hauling compost and spraying and........! Of course there's the cha-CHING factor which helps a great deal as well.

We have left ourselves plenty of space which has just the right amount of grass and flowers and trees with room to add more.

It will be fun to transform our original lot into a new back yard. I'll keep y'all posted.