Reasonably Well

Sjogren's Advocate: Fatigue, pain and brain fog? Don't blame it on fibromyalgia

juliaschulia@gmail.com (Julia Oleinik) — Wed, 7 Jul 2021 10:34:00 -0700

As usual, Dr. Sarah's most recent post on Sjogren's Advocate is excellent. Here is the first few paragraphs, but head over to read it all:

Sjogren's symptoms can look like fibromyalgia

Many Sjogren’s patients are told they have fibromyalgia, without anyone ever considering the possibility of a Sjogren’s diagnosis. Sjogren’s symptoms can look a lot like fibromyalgia. Fibromyalgia is a diagnosis of exclusion. Once Sjogren’s is diagnosed, the “fibromyalgia” label should be dropped.

Fibromyalgia is a syndrome, not a disease (181). It is cluster of symptoms that is not associated with objective markers. On the other hand, Sjogren’s is a well-characterized immune-mediated disease, not a syndrome. While Sjogren’s is not always easy to diagnose, there are numerous biomarkers (indicators) of the disease. The name “Sjogren’s syndrome” is inappropriate and outdated, and is slowly being replaced with “Sjogren’s disease” or simply, “Sjogren’s” (188). Continue reading here.

Yep. Agree 100%.

I was initially diagnosed as having fibromyalgia, as I did indeed meet its criteria. I hurt. Everywhere. I was exhausted beyond belief, and my brain was mush, especially when my fatigue was at its highest. Eleven -- yes ELEVEN years ago, I expressed my numb brain this way:

........So, I have had a week where the ol' grey matter just isn't functioning at it's peak. This used to freak me out considerably early on in my experience with autoimmune disease. You know the feeling - it's as if any thought process is in sloooooooow mooooooootion. Retrieval of items in my memory feels like rummaging around blindly for my size in a mile high stack of clearance sweaters at JC Penny. It's possible to find what you need. But it takes forever.

You can read the rest of my post here. Be sure to read the comments, which are amazing.

Luckily, my doctor also ran blood tests for autoimmune diseases, which proved that all of the above was related to Sjogren's. She then removed fibromyalgia from my diagnosis list, so I was fortunate in that respect.

Has your medical care been compromised due to an inaccurate fibro label?

Hiya

juliaschulia@gmail.com (Julia Oleinik) — Wed, 7 Apr 2021 13:51:00 -0700

It's been too long since we talked, I know. Thank you to those that checked in with me to make sure that I was still breathing and all; indeed I am! Y'all are so kind.

Here's what I have been up to since my last post.

This amazing device alerted me to my heart arrhthmia, which although is not serious, is still good to know. As a result of a cardiac workup, I now can put a name to those annoying irregular heart beats (premature atrial contractions in frequent bigeminy) and I have learned that I have inherited my dad's leaky mitral valve. Who knew? I certainly didn't until I ran an ECG strip via my iWatch. Amazing.

It also can alert EMS if I take a nasty fall, can measure my pulse and blood oxygenation, but best of all -- I CAN CALL TERESE TO HARASS HER FROM THIS THING.

I feel like Dick Tracy while wearing it.

Yes, I will be good and follow up as recommended with my cardiologist and even more importantly: will follow his advice. Even if it means getting a valve repair or replacement at some future point.

We had a smaller version of our annual Easter Ham-O-Rama last weekend. What a hoot. We ate too much, had a one kiddo egg hunt, and flung Peeps to our hearts' content.

Ahhhh. I love Easter.

I love my Easter rolling pin. It makes the best designs in shortbread cookie dough. And it is easy to use for people with tremors like me.

This grandchild is getting big so fast! He's morphed into a kid. Overnight.

I love the flowering plum trees that line our driveway.

Grandkiddo is moving far too fast for this creaky old gramma.

We even were graced with this amazing rainbow.

I'm thinking that it reminds us that far better days are ahead. Especially since I have received both doses of the Covid-19 vaccine.

I hope that y'all have been Reasonably Well. Hugs.

Sjogren's Quarterly: Why Language Matters

juliaschulia@gmail.com (Julia Oleinik) — Fri, 22 Jan 2021 10:59:00 -0800

I enjoy all of the Sjogren's Syndrome Foundation's publications. The most recent edition of Sjogren's Quarterly, The Professionals' Resource on Sjogren's lead article was entitled "Why Language Matters" and written by Florian Kollert, MD and Benjamin A. Fisher, MD. It was a very interesting read in which the authors voiced their concerns over the use of 'primary' and 'secondary' terms to classify Sjogren's Syndrome. Here's an excerpt:

Historically, Sjogren's has been classified into 'primary' and 'secondary' disease. 'Primary Sjogren's is defined as a standalone entity occurring in the absence of another systematic autoimmune disease, whereas 'secondary' disease is associated with the presence of rheumatoid arthritis (RA), systemic lupus erythematosus (SLE) or systemic sclerosis (SSc), for example. Notably, the presence of a coexistent autoimmune disease is very common in Sjogren's (approximately 30% overall) when organ specific autoimmunity is also included.
In our recently published article (Kollert & Fisher, Rheumatology) we reviewed the historical justification for the distinction of 'primary' and 'secondary' Sjogren's based on genetics, clinical presentation, chronology, histology and serology, and found it difficult to justify the dichotomy based on existing evidence. We therefore recommend further research, and advocate abandoning the term 'secondary' unless strong evidence emerges of a pathological difference between these subsets. We further argue for a nomenclature including the associated disease (Sjogren's in association with...) to not only emphasize the second autoimmune disease but also Sjogren's itself. In our perspective, Sjogren's is an under-researched disorder, a situation that is even worse for patients with so called 'secondary' disease. This stands in sharp contrast to the potential impact of Sjogren's on quality of life, even when compared to other systemic rheumatological disorders..............
.........Patients with 'secondary' Sjogren's are often excluded from clinical trials and were not incorporated in the development of the most recent classification criteria for Sjogren's. They were considered in the widely used 2002 criteria but neither histopathology nor autoantibodies were necessary for classification as 'secondary' Sjogren's. Thus, recent clinical trials investigating new compounds for patients with Sjogren's typically recruit patients with primary Sjogren's only. So it seems unclear if a drug which is eventually proven to have efficacy for these 'primary' Sjogren's patients; will be accessible to patients with 'secondary' disease also. Conversely, studies of other systemic autoimmune diseases such as lupus or rheumatoid arthritis have typically not excluded patients with concomitant Sjogren's. This provides a largely unexplored opportunity to derive additional early signals of potential efficacy in Sjogren's.......
.......Taken together, as there is currently no evidence for a major difference between the phenotype of 'secondary' and 'primary' Sjogren's we argue in favor of using the same set of classification criteria for both. Moreover, we take the side of abandoning the term 'secondary' in favor of 'Sjogren's in association with' to emphasize not only Sjogren's but also the associated autoimmune disease. The overlap between different systemic autoimmune diseases should be regarded as an opportunity to foster drug development and to further stratify our available treatment modalities and personalize our therapies.

Well said. I agree on all points.

Has your rheumatologist diagnosed you with 'secondary' Sjogren's syndrome? Has your care been affected as a result?

As Promised

juliaschulia@gmail.com (Julia Oleinik) — Wed, 30 Dec 2020 09:51:00 -0800

Here is the photos from this year's Christmas shenanigans. It was a great week; quieter than other years but just as fun. Perhaps there is a message for me there? Hmm....

This week, as is always after a holiday, is being spent resting and recuperating. And, as always, I am left feeling as though the post holiday fatigue is worth every minute spent recovering.

I hope your holidays were rewarding as well.

Happiest of Holidays!

juliaschulia@gmail.com (Julia Oleinik) — Thu, 24 Dec 2020 11:16:00 -0800

My laptop has gone slightly bonkers today, which is lousy timing since I wanted to write a lengthy post which had zillions of pictures.

But.

I can't import images today.

So I'll just wish you all happy holidays; Merry Christmas, and a Happy New Year. I hope your holidays are festive and heartwarming.

I love you guys.

See y'all when I get this computer thing resolved.

Have some eggnog and fudge in the meantime!

It Could Have Ended Much Worse

juliaschulia@gmail.com (Julia Oleinik) — Sat, 14 Nov 2020 10:48:00 -0800

While I was hanging onto the screen door handle for dear life and dangling off the edge of the stair landing, once I was certain that I would escape significant injury, my next thought was, "Gee. Maybe I won't tell John about this...."

My dumb stupid lack of balance had struck again.

Did I tell you about my latest flirtation with a fractured hip?

No?

Well. Anyone who knows me, also knows that since autoimmune disease made its appearance, my clumsiness has increased exponentially resulting in stitches, broken bones, scrapes and impressive bruises. Wasn't a pretty sight.

But since moving into our home that has a master on the main level, I have avoided catastrophic injury. Woot! Country living AND fewer emergency room visits!

The only issue as with respect to safety for klutzes was the lack of stair railings on the outdoor steps. We debated style and types of railings and whether we should completely reconfigure the entryways for two years. Since it was only two steps up, I figured we had plenty of time.

Until I was lugging three bags of groceries into the house and slipped sideways off the stoop. Which brings us to the dangling incident.

Two days later, I came to my senses and realized that I should let John know; and by the weekend he had installed two dandy sturdy railings.

I realized that it was not wise for me to try to hide the fact that my balance issues were still alive and well. Dumb stupid misplaced sense of pride.

I used to be so embarrassed to use scooters in stores, but once I swallowed my pride and use them when I need them, I am perfectly content to zoom up and down the grocery store aisles without a care.

Well.......except for the time that I took a corner too sharply and took out an entire Foster Grant sunglasses display. Oops. Luckily the staff was super friendly and had things put to right quickly.

Do you struggle with your pride keeping you from accepting or seeking help?

Autoimmune Disease is Not For Wimps

juliaschulia@gmail.com (Julia Oleinik) — Mon, 5 Oct 2020 15:18:00 -0700

Image found here.

So here I am; covered in sweat and am a shaky, exhausted mess.

It’s not pretty.

Silly Julia. I had the audacity to expect that if I chose to make a small three ingredient batch of cookies today having not done much of anything, I would be able to do it without depleting my energy stores to zero.

Hoo boy. Was I wrong. So not only am I stinky and slimy and crabby beyond belief, I have dropped to zippo energy levels and am feeling the need to vent. To someone who would truly understand. And, of course, that means I need to share with y'all, my friends.

I appreciate having this outlet so much.

It has been a rocky year for me overall. Like everyone, I am sick to DEATH of the pandemic and social distancing. I really don't like campaign years, and this is no different. But this stinko year has added autoimmune insult to injury and has seemed like one giant flare ever since I started the New Year with a serious case of shingles.

I won't bore y'all with all the nasty details. They're laid out in all their grossness in previous posts.

Bottom line is that I have been clobbered with a plethora of strange symptoms, new diseases, and medication misadventures, which have taken a major toll on this old body; and when those events all combine in a short span of time, my biggest and most anxiety producing symptom is by far fatigue.

I definitely have whined about my fatigue here before. So those who have read my older posts have gotten an eyeful. But this go-around seems to be setting my "normal" bar on energy lower and lower. I have told my rheumatologists since day one that exhaustion, fatigue, and non-restorative sleep are my most significant symptom of autoimmune disease. I know that a great deal of us in this community feel the same. Historically, although doctors heard from their patients that autoimmune fatigue could be life-changing, the typical reaction from health care providers could best be described is indifference. Unfortunately, many physicians who have not been adequately educated about this devastating symptom adopt the same technique of care.

I'm hoping that with continued education, that attitude will change. I have been so fortunate to have had rheumatologists and internists that have been supportive and encouraging in my battle with the fatigue beast. At a recent appointment, Dr. Young Guy gently acknowledged to me that he feels that aside from minimizing my inflammation and promoting general good health strategies, he has run out suggestions for fatigue specific treatment. Bummer.

In the future, hopefully we will understand the mechanism behind this bone crushing symptom. Recent studies such as this one will help us along. This excerpt was taken from Frontiers in Immunology:

Published online 2019 Aug 6. doi: 10.3389/fimmu.2019.01827

PMCID: PMC6691096

PMID: 31447842

Fatigue, Sleep, and Autoimmune and Related Disorders

Mark R. Zielinski,1,2,* David M. Systrom,3,4 and Noel R. Rose5

.......................

Introduction

According to the National Institutes of Health, autoimmune diseases are estimated to afflict over 20 million individuals in the United States (1, 2). Currently, there are over 100 recognized autoimmune diseases (3), and the prevalence of many autoimmune diseases continues to rise (4, 5). A recent self-reported survey of individuals with autoimmune and related disorders by the American Autoimmune and Related Disorders Association indicated that this population's primary concern is fatigue (6). Over two-thirds of respondents reported that their fatigue was profound, debilitating, and prevented them from completing simple everyday tasks. Indeed, a growing literature indicates that fatigue is common in most autoimmune-related diseases, as well as among individuals with related immunodeficiency disorders (7–12). Furthermore, it is estimated that 7–45% of people in the general population exhibit persistent fatigue (13), while almost 98% of individuals with autoimmune disease report that they suffer from fatigue (6). Fatigue can cause dramatic impairments in mood (14), diminish social aspects of life (15), lead to an inability to perform routine daily activities (16), and limit physical activity and work (17). Consequently, fatigue can severely affect well-being and has a financial burden on the individual, family, and society (18–21).

Fatigue is multifaceted and typically broadly defined making it difficult to decipher the causes in specific autoimmune diseases (19). Fatigue is generally described as a condition with prolonged periods of exhaustion accompanied by the inability to perform activities to an expected capacity. There are numerous aspects of fatigue that can be assessed that define the type of fatigue including the severity of functional impairment; time-of-day/circadian patterns of fatigue; length of the persistence of the fatigue from seconds to days; time between fatigue periods; duration of time necessary for the fatigue to dissipate; influence of sleep loss or disturbances in sleep; impact of depression or anxiety; degree of distress concurrently occurring with the fatigue; type of impairment, such as is cognition, motivation, attention, or physical abilities; and the type of physical performance or activity that is impaired, such as in walking, climbing stairs, socialization, chores, cooking, bathing, work, and sex. The type of fatigue experienced in autoimmune disease is variable These differences are likely related to the particular tissues/organs, cell types, brain areas, and molecular and physiological mechanisms affected by the condition (19).

Currently, there is a lack of efficacious long-lasting treatments for individuals experiencing fatigue in autoimmune disease. This is due, in part, to the limitations in our understanding of the multiple mechanisms responsible for fatigue. Evidence suggests several physiological functions can contribute to fatigue including oxygen/nutrient supply (22, 23), metabolism (24), mood (14), motivation (25), and daytime sleepiness (26, 27). Interestingly, inflammation is altered by many of the factors that modulate fatigue and vice versa (25, 28–30). Growing evidence indicates that neuroinflammation is a primary factor contributing to fatigue (25, 31). Since inflammation plays a large part in inducing fatigue, it is plausible that inflammatory pathways and the subsequent physiological alterations modulated by the inflammation are treatable targets for fatigue in patients with autoimmune disease. Indeed, evidence in autoimmune and related conditions, such as neurosarcoidosis, which is associated with increased lung inflammation, sleep disturbances, and fatigue, exhibit reduced fatigue from anti-inflammatory treatment (32). Herein, we discuss the role of factors contributing to fatigue in autoimmune disease including inflammatory-related mechanisms, relationships between peripheral and central nervous system (CNS) inflammation, particular brain areas and neurotransmitters, and cerebral vasohemodynamics (Table 1).

.............

Figure 1

found here, in the journal Frontiers in Immunology

Continue reading here.

Over the years, I have learned several lessons in battling my fatigue, the most important being this: to be relentlessly honest in my self assessment of energy levels. If I push myself beyond my capabilities when artificially propped up with prednisone or caffeine, I always -- but always -- crash and burn. And require several days to recuperate. Being the stubborn individual that I am, this is one with which I still struggle. Pacing is also vitally important, as is setting realistic goals.

Sigh. While these guidelines seem logical, they are really hard to implement. It is especially hard for me this year since being sensible about managing my energy is almost impossible when I don't actually KNOW what my energy reserves are. My limits fluctuate wildly from day to day; sometimes even hour to hour.

Ah, but the battle continues. I know from experience that another very important tenant in managing my fatigue is exercise. If I simply plop myself in a recliner and give up the fight, long term my reserves will plummet to absolutely nothing and my muscles weaken. So even on those days when I am most exhausted, I do some kind of exercise. I have invested in a recumbent exercise bike, which I absolutely love. Just a few minutes a day may be all I can manage on flare days, but I feel better after, without exception. Good nutrition especially avoiding refined sugars is important, as is maintaining a relatively healthy weight.

How do you manage your autoimmune fatigue?

And now for something completely different

juliaschulia@gmail.com (Julia Oleinik) — Sat, 8 Aug 2020 21:50:00 -0700

My posts lately have definitely been of the whiny-butt persuasion. I thought it would be mutually beneficial to us if I shared some of the positives in my life these days; the idea being that the crummy times would be balanced out with all of the good ones. And there have been several.

The good may outweigh the not so good, come to think of it. I think this exercise is proving fruitful already.

So. Ready for the slide show of positivity? You are?

Get the lights, would you, Terese?

We'll start with the little person that makes me smile every time I see him. He's so jam packed with cuteness I almost can't stand myself. I'm grinning so hard my cheeks hurt.

These green old beauties were my dad's. Ah, what memories. As soon as I was old enough to swing a hay bale hook, my brothers and sisters and I made hay while the summer sun was shining. I took my turn steering the tractor, the baler, and the hay wagon around the fields and I have to laugh remembering what a steep learning curve I had trying to master that task. I was far more skilled in lining up grain wagons to the feed elevator. It was hard work, but any farm kiddo in the tri-state area was doing the same. It was just what we did. What a lot of work -- but oh, did it feel good to jump in a nearby lake after the last bale was unloaded each day.

My niece sent this picture to me this week, letting me know that she and her husband have polished up the old John Deere and have put her back to work. Is that not amazing? Dad would be tickled pink to see her making hay once again. I am too.

Speaking of heavy equipment, I've developed new skills this summer as John prepares to have a new storage shed built. We are going to put it next to my greenhouse AKA storage shed. See all the gravel?

See the woman manhandling the compactor over all that gravel? In a dress and leggings? I like to dress for special occasions...and for real comfort. Love those cotton t shirt dresses. I always go for the comfy wumfy look when working construction.

I loved the mini front end loader! We rented this one but I want one of my very own! It is controlled by two joysticks so it felt like playing a video game in real life. I'm sure that I could put it to good use.

In other good news, my flowers and garden are blooming and growing. Last year, these gladiolus didn't blossom and I threatened the bulbs with uprooting them and tossing them into the burn pit if they didn't produce at least two blossoms this summer. Aren't they pretty? It was a great surprise.

Glads, well done. You get to stay in your garden bed.

It appears that one of my favorite garden veggies has sprouted and grown and are actually producing something which will be edible soon. Love those cucumbers. Grow really fast, guys.

Let's see...what else.....oh, righto. My hammock swing situation. I previously had thoroughly enjoyed not one but two of these wonderful devices here on Mount Norway. One suspended from a branch of the biggest maple tree on our property, and...

....one on our patio off the master bedroom. It's a splendid place to swing and enjoy morning coffee. Note: that is not coffee in my plastic wine glass. Any beverage can be substituted for coffee quite nicely and any time of the day.

So I am beyond excited to share pictures of my newest hammock swing hanging underneath the deck. What a shady and wonderful location. Now I can swing and float to my hearts content almost anywhere. There's something so therapeutic about being suspended in a hammock: I feel almost as though I am swimming or floating. Me and my joints absolutely love the sensation. With the addition of this third hammock swing, I can count on being able to swing and float in the shade any time of day. I can follow the cool shade all around the house. Wonderful.

John is getting quite skilled at installing these things, thank goodness. I wonder where else we could put one? There could never be too many hammocks around.

Ahhhhhh.

So life is good when I take time to count my blessings.

How are y'all? I'd love to hear about all of YOUR blessings.

The Love it and Hate it Drug

juliaschulia@gmail.com (Julia Oleinik) — Thu, 30 Jul 2020 12:03:00 -0700

Prednisone molecule image found on

Prednisone.

Yeah. About four years ago, Dr. Young Guy and I made the decision to taper then discontinue the low dose daily prednisone that I had been taking for hmm......I don't remember exactly......but a lot of years. I had been taking it for the debilitating fatigue, malaise, and general joint pain that came with my flavor of Sjogren's. But as time passed, I think I became acclimated to it until I reached a point where I just didn't think it was as effective as it had been previously. Since steroids -- of which prednisone is one -- are extremely effective in inflammatory situations, but also come with some potentially severe side effects, I decided to stop taking it. And, for quite awhile, I was pleased with the results. One less side effect to worry about, one less pill on the morning stack. Not terribly noticeable that it was absent. Cool.

To refresh your knowledge of prednisone, read this.

So I haven't been on daily steroids for a long time.

Until.

One morning last week, I woke up yet again to pain in my hands and feet; I had to grit my teeth to close my hands into fists, and I dreaded that first step out of bed. I lay there, opening and closing my hands and wondered why the heck I was starting my day that way. But I shuffled off -- slowly -- in my orthopedic bedroom slippers which were extraordinarily expensive and didn't help my pain at all -- and poured myself my first glass of cold brew coffee.

Which is AMAZING. I make it myself having refined my process. I'll share that another time with y'all.

As the caffeine hit my brain cells clearing the first layer of brain fog, suddenly it occurred to me: THIS IS NOT MY NORMAL.

Duh.

I have been putzing around with these symptoms for at least three months. They began gradually and I think that, like the frog in the boiling water analogy, I became accustomed to the new pain and in some wackadoodle manner accepted it as routine.

The frog analogy? If you haven't heard it, it goes something like this: If you put a froggie (poor little thing. I'm glad this is just a story. DON'T TRY THIS AT HOME, KIDS.) into a pot of cold water, then put froggie and pot over a very low flame, the water heats so gradually that he stays in the pot far longer than he would if he had been dropped into a pot of hot water.

Sad, but true.

So like the froggie, I sat in my pot of water while these weirdo pains kept heating up. Finally last week, I made the decision to jump. And I'm so glad I did.

As anyone with Sjogren's knows, the symptoms of this disease are varied and insidious. I had been dealing with osteoarthritic pain in my hands for decades, but this was completely different, especially the fact that it was something that I awakened to every morning. I've been buying every kind of orthopedic shoes and insoles with metatarsal bars that I can find, which do seem to help during the day but the next morning, I am back to pain square one. My shoe rack is becoming embarrassingly full of pairs that seemed to be promising but didn't meet my expectations. Bummer. Expensive.

I contacted Dr. Young Guy that day. He thinks that I have acquired some kind of inflammatory arthritis and prescribed a course of prednisone for me with a follow up appointment after I have been taking it for ten days.

Which brings me back to the title of this post.

After four days, I can say that my symptoms are less; still there but severity diminished. Whew. And, to add to the whole bizarre mix of symptoms, a mysterious itchy and scaly rash on my face that appeared over the last month is disappearing amazingly fast.

So while I can definitely see some benefits to taking this round of prednisone, there is also some drawbacks, the most irritating being an irresistible urge to bury my face in a chocolate cake topped with ganache; warmed then served with a slightly melty scoop of vanilla bean ice cream.

Ooooo. Excuse me a sec as I refocus my eyes and return to reality. Whew.

Some folks experience an appetite decrease while taking steroids, I however, am not as lucky and have carb cravings that stop just barely short of being totally overwhelming. So far I'm beating them back with lots of fresh fruit, wish me luck with that.

Then there's this totally fake sense of energy. Dangerous stuff, that. I find myself beginning big tasks, then somewhere around 4 pm, *poof*. It all goes away leaving me feeling as though I have been dropped from a three story building. After which I need to get horizontal and stay that way until bedtime. I'm trying hard to rein in this sensation, with some success. So far.

Luckily, my mood seems to lift somewhat when I am on pred. I am not certain whether this is due to decreased yukky symptoms, or is a result of artificial energy. But for whatever reason, I'm glad it is there.

Because.

I need some optimism right now even if it comes in the form of a little white tablet. I really, really, REALLY don't want to add yet another autoimmune condition to my already lengthy list.

Aaaaaaaarrrrrrrgggggggghhhhhh.

But I look forward to my next appointment with my rheumatologist when we can sit together, face mask to face mask, and discuss this thoroughly.

I'll keep you posted.

Brenda Doesn't Charge Nearly Enough

juliaschulia@gmail.com (Julia Oleinik) — Tue, 14 Jul 2020 10:38:00 -0700

So, like most of us, during this weirdo pandemic, I have had to adapt to many things, like planning ahead and ordering groceries. And not spontaneously driving off in Sadie with Lulu bopping around in back seat looking for adventures which involve drive through windows and french fries.

And dealing with the fact that Lulu's awesome groomer, Brenda, is still not open for customers. Poor Lulu has been seriously shaggy, to the point that sometimes it is hard to see her little eyes through her overgrown eyebrows.

What an overgrown furry little canine.

As a result, I have, with great reluctance, started to groom her myself. My goodness. This is very very hard work for both Lulu and myself.

Poor doggie.

I purchased an inexpensive grooming set online awhile back, and now have completed two sessions over the past several months, with, um.............interesting results.

Poor doggie.

The first attempt was a couple months ago, and took three days. It is HARD getting a trimmer through thick curly schnauzer fur. And then the ears? Are you kidding me? Our vet insists that all of the hair inside her little ears is removed to avoid recurrent ear infections. Then all that silky, tangled fur that grows from between and under her paws. Which tracks in mountains of dirt and mud and grass clippings. I still haven't worked up the courage to trim her nails that are colored black, which means it is impossible to tell where the nail ends and the quick starts. I would feel terrible if I cut it too far and she started to bleed. Owie.

And lets not even discuss trimming this dog's.....er....... nether regions. You know what I mean.

Poor, poor doggie.

Bless her little canine heart, Lulu has been remarkably patient with John and I as we struggle to minimize her overgrowth. I couldn't bring myself to take a picture of our scraggly first attempt, and was relieved when she eventually regrew most of her very unevenly cut coat. But the second time has gone somewhat better. It is still abundantly clear that a very amateur groomer has been manning the clippers and shears, but at least Lulu can be identified as a schnauzer. If one doesn't look too closely.

Oh my goodness. Those long little black nails.....

Just look at her woeful expression.Those poor little ears!

When Brenda reopens her business, I am going to pay her far more than what she has been charging. She earns every penny.

All the way to heaven.......is heaven. --- Saint Catherine of Sienna

juliaschulia@gmail.com (Julia Oleinik) — Fri, 26 Jun 2020 11:07:00 -0700

Is this not seriously weird times? How are y'all feeling about the world we live in right now?

I'm feeling stressed, to be honest.......mostly due to the relentless inescapable presence of this pandemic. It is horrifying to watch the death toll of the virus mount to staggering numbers without any indication that it will slow any time soon, and to observe our world's best scientists and physicians still struggling to understand COVID19 and have yet to develop a vaccine.

My Bratty Inner Child Julia has retreated to some dark corner of my psyche, sucking her thumb while wrapped in her blankie.

BICJ looks a bit wobbly here. I had two cups of coffee before attempting to sketch her.

Yeah.

BICJ would normally be on a real rampage in the face of stress; baking chocolate cakes and indulging in massive retail therapy, for example. The fact that she's not has really taken me aback.

So I find myself looking for some kind of reassurance that all of this too shall pass. Which I know it will. We are resourceful intelligent beings. We will find a way to successfully manage this crisis, I know; we always have. I have a young friend who is a PhD working very hard in vaccine development. My sister manages drug and therapy studies for a large pharmaceutical company and has passed along encouraging very preliminary results of therapies to battle the virus.

I admire these folks tremendously, and if they are any representation of others working in their field, our future is safe in their very diligent, capable hands.

"All the way to heaven......is heaven." --- Saint Catherine of Sienna

I came across this marvelous quotation from Saint Catherine of Sienna the other day, which made me pause and wonder. Are challenges, both large and small, what make life important? Do I need to view this experience as something from which I can learn?

Are there bits of heaven hidden in this global craziness?

I think I need to begin to look for those heavenly nuggets. Let me know if y'all find some.

A Therapy Merry Go Round

juliaschulia@gmail.com (Julia Oleinik) — Mon, 18 May 2020 11:11:00 -0700

By Jebulon - Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=10486096

I feel as though I were a five year old version of myself this morning.

Well, a five year old saddled with aches and pains and covered in a rash. Oh, brother.

This kiddo version of me has been on a lengthy merry go round ride and hopping from one horse to another.

Ooo. I like this one -- no, wait, this saddle is uncomfy. Maybe this one? No, it's too tall for me to get up on. *stumbles to next horse* Waaahhhh! I fell off this one onto my head! And this one isn't going round and round at all!

I have failed yet another DMARD -- disease modifying anti rheumatic disease -- medication. Which makes me feel like that five year old looking for that perfect horse on an amusement park ride. This morning, I'm in the middle of a lying on the floor flailing my arms and legs and wailing tantrum because I want to be like all of the other kids! I want to be sailing around in circles with my pigtails flying in the wind on a beautiful carousel, too! I need to find the perfect merry go round horsie that will deliver that kind of experience but my horsie seems to be always just beyond my grasp.

Sniff, sniff......pardon me as I blow my nose and set aside my self pity for a minute.

So why have I been on a DMARD merry go round for seventeen years, you ask? I ask myself the same question. Repeatedly. Especially after yet another drug trial that ends in either catastrophic side effects or lack of any effect whatsoever.

My autoimmune diseases have gifted me with several symptoms which include dry eyes, dry mouth, sluggish thyroid, foggy brain, peripheral neuropathies, joint pain, vasculitis, a lupus head to toe skin rash, neutropenia, and bone crunching fatigue. So I find myself on a decades long journey to find something - anything - that helps tame at least a few of these nasty beasties that have traveled with me since 2003.

I have recently had to hop off injected methotrexate, the latest horse on my pharmaceutical carousel ride. Dr. Young Guy and I were hopeful that after three months without further drops in my already low neutrophil counts and a lull in skin rashes, that this could be THE ONE. But alas, gradually over the last month my rashes began to return and my joint pain and fatigue came roaring back full force.

I could attempt to list here all the medications and therapies that we have tried, but that would just prolong my tantrum. Suffice to say that the list is long and yes, does include various and extensive dietary modifications.

Which leaves my amazing rheumatologist scratching his head and doing yet more research into treatment options for me. Thank goodness for telemedicine during this social distancing time. It is so easy for me to simply send pictures, have phone appointments, or video appointments. I can stay in touch with my care providers with a click of my keyboard.

If only the answers to my problems were accessed as easily.

Are you in the same amusement park as I am? Betcha anything a majority of my readers are. What do you say we just skip the whole thing and go get some cotton candy?

Lockdown without losing my marbles

juliaschulia@gmail.com (Julia Oleinik) — Thu, 2 Apr 2020 12:21:00 -0700

Image found on Wikipedia, here.

Well, without losing any MORE of my marbles that have long since left the marble bag, anyway....

So. How are y'all managing this social distancing thing? Are you one of those working from home? Not working from home? Chasing your kiddos around home? Hanging around home? Loafing at home? Following all of the directives and staying home?

Um -- are you one of those admirable people that are using this time to improve yourself by learning a new skill, or improving your physique?

YOU ARE?

Whoa. I'm not. I wish that I were; but y'all should know me well enough by now to know better. Yes, my Bratty Inner Child Julia is bouncing off the walls around here. Every time I try to corral her and suggest some kind of useful activity or learning opportunity, she just blows a raspberry in defiance and goes back to playing her four thousand-th game of Candy Crush.

In stark contrast, John is working diligently from home. He has an impressive bank of computer screens on his expansive office desk here at home with his keyboard at the ready. From his executive style office chair, he manages his job efficiently and tells me that by eliminating the in-person incidental contacts he experiences when working in his office, he is actually more productive from his home headquarters.

I'm impressed.

For the most part, I try to stay out of his way during his workday. Well, I TRY. But it is great having him around. Just knowing that he is here and being able to converse with a non-schnauzer person during the day is great.

I beg your pardon. Sniff.

No offense, Lulu girl. I love you, you definitely communicate amazingly well, but your human vocabulary is somewhat limited.

Just sayin'.

So Lulu and BICJ and I have been passing our days alternating between fussing around outdoors, Netflix, cable news, and just plain goofing around. King, the genius game studio that created the Candy Crush games, has generously offered unlimited lives to its players this week. Which is kind of dangerous for my dry eyes and arthritic hands seeing as it is all too easy to mindlessly play these games for far too much time.

After John signs off his computer for the day, things become a little more interesting around here. We
have been working on jigsaw puzzles, cook together, and enjoy a happy hour on our front porch every day. Which is delightful. Some of our happy hour concoctions are tastier than others. I wouldn't recommend this one, which we saw on a newscast, and was dubbed the "quarantini": It's EmergenC and vodka. Blech.

I prefer my tame spritzer hard cider, which is cider diluted with club soda. Much yummier.

We plunked a card table in our living room and cracked open a jigsaw puzzle. Which, I might add, is NOT PLAYING FAIR because its pieces have several straight edges on pieces that are not edge pieces. Isn't that breaking some kind of puzzle rules?

I am so grateful for the expansive view that we have from our house. It is always changing, either by time of day or cloud formations or weather conditions. I think it's endlessly entertaining and can spend an amazing amount of time in front of my windows or perched on a lawn chair outdoors.

I am also grateful for the technology that allows John and I to see hear and talk to our friends and family. Can't imagine if that were not available right now. It is so reassuring to see my kiddos all healthy and happy in pictures and videos and FaceTime chats.

I care about all of my readers, too. So please tell me how you are feeling and what ways y'all are passing the time these days. I sincerely want to know.

And I really, really want all of you to be around on the other side of this pandemic, so stay home. And be well.

Stay in touch.

Dr. Sarah Schafer: Am I at increased risk for COVID-19?

juliaschulia@gmail.com (Julia Oleinik) — Thu, 26 Mar 2020 19:23:00 -0700

Image found on Wikipedia, here.

I've mentioned the excellent blog written by Dr. Sarah Schafer a few times, and for good reason. It's a stellar source of information and advocacy for Sjogren's syndrome.

Dr. Schafer has written another post for Sjogren's Advocate, this one timely given the worldwide attack of COVID-19.

Take time to go to her blog and read it. The information that it contains is of vital importance:

Am I at increased risk for COVID-19?

YES. Sjogren’s patients are at higher risk for infection and serious complications of infection.

My opinion about this is shared by many, but not all, rheumatologists. Because the virus is new, at this time there are no data to analyze that will show how Sjogren’s patients will fare with COVID-19 disease. This could take a year or more to determine. We don’t have the luxury of waiting to find out. Patients need to know now if they should take extra precautions to prevent serious outcomes, including death. Fortunately, a lot is known about the impact of Sjogren’s on the lungs and the immune system. The existing facts strongly suggest that Sjogren’s patients should take extra precautions to avoid COVID-19.

The UK National Health Service just published a guide for rheumatology care, stating that Sjogren's patients ARE at high risk. Being older (60 +), being on immune-suppressing drugs, or having lung disease will further increase the risk.

Why Sjogren’s patients are likely to be at increased risk for serious complications with COVID-19:

1. Dryness decreases surface immunity, the first line of defense.
The mucus layer is a critical first step to avoiding infection. This moist layer creates both a physical barrier and an immune system barrier from the outside world to the lungs. Dryness decreases this important surface immunity, making the airways and lung tissue more vulnerable to infection.

2. Lung disease, a common problem, increases risk for complications if infection does occur.
About 10% of patients have interstitial lung disease (ILD) with symptoms. Many more (up to 50% plus) have signs of ILD on high-resolution CT. Moreover, there are many other types of lung disease that Sjogren’s patients have, often undiagnosed. Lung disease is a known risk factor for COVID-19 complications.

3. Dysfunctional immune system
Sjogren’s patients do not have normal immune systems. An overactive immune system does not mean better protection against infection; the overactivity is misdirected.

4. Immune suppressing drugs
Many drugs such as methotrexate, prednisone, Cellcept, Rituxan and others suppress the immune system. These increase the risk of serious infection.

Note: Hydroxychloroquine (HCQ, aka Plaquenil) is not an immune suppressant, but an immune system modulator. Do not assume that taking HCQ will protect you from infection. Despite media reports, this has not been proven with reliable studies!

Continue reading here.

While you are on the Sjogren's Advocate site, be sure to take a spin around and explore all of Dr. Schafer's information and resources. It will be time well spent.

COVID-19 and Sjogren's

juliaschulia@gmail.com (Julia Oleinik) — Fri, 13 Mar 2020 11:02:00 -0700

Recently I was prompted (and rightly so) to write a post that address COVID-19 and Sjogren's syndrome. So I unglued my eyeballs from the cable news channels, went looking for data and found that of course the Sjogrens Syndrome Foundation has put together this excellent information: (Bolding mine).

COVID-19 Sjögren's Precautions

Coronavirus / COVID-19
Precautions for Sjögren's Patients

The Sjögren’s Foundation, in concert with our medical advisors, is closely monitoring the coronavirus/COVID-19 and what 0ur patients should be doing.

As a Sjögren’s patient, your risk is not necessarily higher for getting the coronavirus than others, but if you do get diagnosed, you should let your physician know that you suffer from Sjögren’s and that you may be at higher risk of complications from COVID-19.

Certain people are at a higher risk of developing serious complications from COVID-19. These include people:

• Over the age of 60

• Pregnant women

• People with serious chronic medical conditions such as heart disease, lung disease, diabetes, kidney conditions, or people with compromised immune systems

As a note – not all Sjögren’s patients have compromised immune systems. This specific risk factor is for those who regularly take drugs to suppress the immune system. Examples include prednisone, methylprednisolone, Imuran, azathioprine, methotrexate, leflunomide, Arava, CellCept, mycophenolate, Rituxan, cyclophosphamide.

Please note that hydroxychloroquine (Plaquenil) does NOT suppress your immune system and does not increase any risk for a more serious illness from COVID-19. However all Sjögren’s patients should still be diligent and be tested if symptoms become present.

Take cautionary steps in your everyday activities:

As the number of cases keep rising in the United States, the Foundation is encouraging all patients to consider taking necessary precautions as outlined by the Centers for Disease Control and Prevention (CDC) to reduce your exposure. These precautions include:

• Wash your hands often with soap and water for at least 20 seconds

• Cover your cough/sneeze with a tissue or your elbow. Throw used tissues in trash

• Avoid touching your eyes, nose, and mouth with unwashed hands

• Wash hands each time before applying eye drops, dry mouth or dry skin products

• Avoid touching public surfaces

• Clean and disinfect frequently touched objects and surfaces

• Stay home when you are sick

• Avoid people who seem visibly sick

If the coronavirus is active in your community, consider avoiding crowded places or situations. If there isn’t an active virus near you, please consider your personal health condition as you decide whether to go to where there are a lot of people.

Prepare in Advance

In case your physician and/or local authorities advise you to stay home for an extended time because of coronavirus, be sure to prepare in advance for such a situation:

• Review the medications that you are taking to be sure that you have enough for an extended time. Find out if your pharmacy can deliver refills

• Stock up on food, beverage and hygiene supplies

• Prepare a list of health care providers with contact/access information

• If you live alone, gather a list of contacts who you might call on if needed, such as friends and neighbors

Symptoms of coronavirus?

Common symptoms include fever, cough, and shortness of breath.

If you have any of these symptoms, you should CALL your doctor, local hospital or health clinic for advice and how best to be tested.

For additional information, consult the CDC’s website: https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html#who-is-higher-risk

As someone who has been taking immunosuppressant drugs AND currently has a low neutrophil count AND has asthma, you can bet your sweet bippie that this girl will take these precautions super carefully.

Even my bratty inner child Julia is taking this seriously. She really wants to be around to create havoc in the future.

So y'all be careful. OK? I want you all to be around in the future too.

I'm Baaaaaaack.....

juliaschulia@gmail.com (Julia Oleinik) — Wed, 5 Feb 2020 18:07:00 -0800

Like my newly manicured nails? The result of a triumphant in-your-face-dumb-stupid-shingles-virus outing.

Well, hello life, again! I have missed you!

Whew.

I am so happy to report that I am feeling much much better. I'm still having some pain, but it is well controlled with non opioid drugs. Controlled enough that I can toss my bra and clothes on in the morning without agonizing about the softness factor for each clothing item.

I can have friends over, can go out shopping, have taken a four hour car ride to see my kids, can go to church.

That is so huge.

I still need to meter out my energy carefully. In fact energy is the factor that limits my activities these days rather than pain.

So I raise my glass of highly diluted current and apple hard cider in a joyful toast to a return to normalcy.

Whatever that turns out to be.

If my viruses could talk....

juliaschulia@gmail.com (Julia Oleinik) — Thu, 16 Jan 2020 13:35:00 -0800

.......they'd be saying, Not so fast, Missy! You think you're really going to have a fast recovery? Well, think again.

Oh, brother. After Christmas, when my shingles rash began to rapidly disappear, I assumed that my pain would leave with it. Woo hoo! I thought it was safe to let the recovery celebration commence.

And, as it happens far too frequently, I was very wrong. I just couldn't understand why I would still wake up in the early hours of the morning in serious pain; the kind that feels as though a burning poker were stuffed through my torso. It left me scrambling for my pain medications and then stuck in a very uncomfortable and frustrating hour long wait for the symptoms to gradually subside.

It just didn't seem logical that I would continue with this level of pain even though the rash had almost completely healed. So I did some reading and discovered with my dismay that what I was experiencing wasn't unusual. At all.

Oh, great.

I was getting close to needing a refill on my pain meds, so I called my internal medicine doctor's office and was informed, that, yup. This could persist for THREE MONTHS. During which such time it would be still considered normal shingles recovery. If, after three months, the pain was still present, then the condition would morph into something else: postherpetic neuralgia.

I do not want to deal with this. Seriously do not want. Here's why, this found on NIH PubMed site found here. (HZ refers to the shingles virus Herpes Zoster):

POSTHERPETIC NEURALGIA

Postherpetic neuralgia is a debilitating complication of HZ. The risk of PHN after HZ increases with age. In a large population-based study, the rate of PHN (defined as at least 90 days of documented pain) increased from 5% in those younger than 60 years to 10% in those aged 60 to 69 years and to 20% in those aged 80 years or older.3 The pain results in large part from damage to the sensory nerves, causing neuropathic pain. The pain is often intermittent and not correlated with external stimuli. Paradoxically, areas of the skin that lack normal sensitivity to touch may be associated with increased pain. Light touch or the brush of clothing is sometimes perceived as being painful, a phenomenon called allodynia. It is not uncommon for the pain of PHN to interfere with sleep and recreational activities and to be associated with clinical depression.

Many patients do not understand why their pain lasts after the rash has healed. Some fear that they are imagining the symptoms or that their complaints represent a weakness in character. Patients should be reassured that their symptoms are real and represent the unseen and persistent damage to the sensory nerves.

Unfortunately, there is no intervention that reliably relieves the pain of PHN. Effective therapy often requires multiple drugs. Therefore, it is essential to undertake treatment in a systematic fashion that will allow appropriate assessment of both benefit and adverse effects for each drug. If 2 medications are started simultaneously and the patient has an adverse reaction, it will often be necessary to eliminate both medications. Another general principle is to have patients begin a medication at a very low dose and increase the dose gradually until either analgesia or adverse effects are noticed. Beginning with a dose that is lower than the anticipated effective level increases the likelihood of a beneficial effect before the onset of adverse effects. It is helpful to keep detailed records of medication trials, including dosage, benefit, and adverse effects.........continue reading here.

My doctor and I both expect my pain to gradually diminish and fade away. But if it lingers past that three month mark, then it would be very important to have a pain management plan in place. My doctor has discussed with me, and I totally agree with her, that the use of narcotic medications in a long term pain relief situation requires very careful consideration. It's in my best interests to experiment with other non-narcotic or opioid medication solutions to avoid the potential for addiction. Here's our plan of attack on my pain currently:

We have added a tricyclic antidepressant medication to my pile of night time pills. In my case, it isn't being prescribed for depression, but some studies have suggested that its us may help in treating chronic pain, especially neuro type pain. I am also taking gabapentin, more commonly used for seizures but also found to be helpful in shingles pain, and having John apply capsaicin cream to my rash site four times a day:

Capsaicin, an extract from hot chili peppers, is currently the only drug labeled by the U.S. Food and Drug Administration for the treatment of postherpetic neuralgia.19 Trials have shown this drug to be more efficacious than placebo but not necessarily more so than other conventional treatments.20

Substance P, a neuropeptide released from pain fibers in response to trauma, is also released when capsaicin is applied to the skin, producing a burning sensation. Analgesia occurs when substance P is depleted from the nerve fibers. To achieve this response, capsaicin cream must be applied to the affected area three to five times daily. Patients must be counseled about the need to apply capsaicin regularly for continued benefit. They also need to be counseled that their pain will likely increase during the first few days to a week after capsaicin therapy is initiated. Patients should wash their hands thoroughly after applying capsaicin cream in order to prevent inadvertent contact with other areas.

I've got to agree wholeheartedly with the last sentence about capsaicin cream. Hoo boy. I mistakenly got some on my hand and then used the bathroom. I won't elaborate further, but take my word for it. Don't be putting that stuff where you don't need it.

Other non-narcotic strategies include very very gently placing a cold pack on my back; and wearing loose fitting shirts or blouses. Bras and seams and elastics sent me running in pain to my bedroom, flinging off garments as I went. Not a pretty sight.

The skin on my back is so sensitive to any kind of touch, that I despaired of ever being able to wear a bra again. Which also wouldn't be a pretty sight. But then I saw this bra, on a very rare outing:

It is made of a very lightweight stretchy fabric. The edges are not hemmed, so are perfectly smooth. When I wear it, I can scarcely tell that it is there. Heaven.

I think one of the best pain relief techniques is diversion, and this little guy provides the best diversion of all:

That little face! Those pink cheeks! That sweet smile! Aren't grandkids therapeutic? Absolutely.

A Christmas Wish for Good Things for All

juliaschulia@gmail.com (Julia Oleinik) — Tue, 24 Dec 2019 13:15:00 -0800

Hi guys. I got my Christmas gift early this when I began to recover amazingly fast.

Funny. Seems as though this disease took ten days to manifest, but when it began to disappear, it did so almost magically.

Alleluia! A Christmas miracle! I was able to go out to lunch to celebrate the beginning of my recovery. What a gift it is to be feeling as though I can participate in the Christmas shenanigans ahead.

Well, some of the events. My body is seriously deconditioned after my three week long siege of medical events. I plan on taking it slow and have promised my family that I will listen to my body and heed it's warnings.

So I'm extremely thankful today for an improvement in my health, for all of my wonderful family around me, and the fabulous commotion that has ensued.

I'm also thankful for you -- the friends that really understand and care. Bless you all.

If you celebrate, I wish you the very merriest of Christmases, and Hanukkas, and any other wonderful holidays!

Another Christmas miracle! Pinky is reincarnated into Pinky 2! And the pinkettes live on!

To Vaccinate or Not to Vaccinate

juliaschulia@gmail.com (Julia Oleinik) — Fri, 20 Dec 2019 15:46:00 -0800

.....is an ongoing hotly discussed topic these days. I fall squarely into the vaccinate camp; but I'm not going to judge those that choose otherwise.

SO

Today's post is written with the simple intent to provide more information, specifically the shingles vaccine.

I was chatting with a friend yesterday, and asked her if she had considered receiving the shingles vaccination. She was super supportive and was kept informed of every gross disgusting and painful detail of my experiences lately. So I was really surprised at her answer, which was,

"Well.....I don't know...." here she wrinkled her nose. "I know someone that had that vaccine and her arm was sore for TWO WHOLE DAYS."

Really? REALLY?

I couldn't believe it. "You'd risk going through what I have been going through for the past three weeks because you don't want to deal with a bit of arm soreness for a couple of days?!"

She shrugged.

It was time to bring out the big guns. I hadn't planned on sharing this but desperate times called for desperate actions. It was time to show her THE PICTURE.

Yes. The one that I'm going to share with y'all.

*Disclaimer: this is really disgusting. So scroll down really fast if you have a weak stomach*

Me. That's ME. I still can't believe it.

This pustule laden rash continues around under my left arm and over the left side of my chest. The picture was taken two days ago, and today has progressed in that the blisters have popped leaving big chunks of raw open lesions across my back.

Delightful.

My friend's jaw dropped in shock. She was stunned.

I don't know what people think a shingles rash looks like or feels like but it isn't pretty or comfortable. For me, my symptoms are severe enough to require three prescription drugs: the antiviral acyclovir, large doses of gabapentin, and opioid pain medication. I feel like a zombie but that's a huge improvement over dealing with the debilitating pain.

I'd give almost anything to have been able to receive that vaccine that could have eliminated or made this experience far less severe than it has been. And I would have -- if only I had had decent white cell numbers this summer and fall.

Ah, well. I most certainly will get it as soon as it is safe to do so.

As I said earlier, I don't want to judge anyone's decision here. I just want to provide adequate and truthful information so that an informed decision can be made.

Currently, there are two versions of the shingles vaccine. Check with your physician to see which is right for you. Here's the dope about this vaccine from the CDC, found here. :

What Everyone Should Know about Zostavax

Your risk of shingles and postherpetic neuralgia (PHN) increases as you get older. CDC recommends that people 60 years old and older get shingles vaccine (Zostavax®) to prevent shingles and PHN. Shingrix (recombinant zoster vaccine) is the preferred vaccine, over Zostavax® (zoster vaccine live), a shingles vaccine in use since 2006. Zostavax may still be used to prevent shingles in healthy adults 60 years and older. For example, you could use Zostavax if a person is allergic to Shingrix, prefers Zostavax, or requests immediate vaccination and Shingrix is unavailable.

Zostavax (zoster vaccine live) was licensed by the FDA in 2006. This vaccine reduces the risk of developing shingles by 51% and PHN by 67%. It is given in one dose as a shot, and can be given in a doctor’s office or pharmacy.

Who Should Get Shingles Vaccine?

People 60 years of age or older should get shingles vaccine (Zostavax). They should get the vaccine whether or not they recall having had chickenpox, which is caused by the same virus as shingles. Studies show that more than 99% of Americans aged 40 and older have had chickenpox, even if they don’t remember getting the disease. There is no maximum age for getting shingles vaccine. Continue reading here.

My friend gulped and told me that perhaps she should go get herself vaccinated. If you are on the fence, read the information and give it serious thought. Shingles is a disease not to be taken lightly.

Well, Shoot.

juliaschulia@gmail.com (Julia Oleinik) — Wed, 11 Dec 2019 19:22:00 -0800

Image explaining dumb stupid shingles found here.

Awhile back, reader Shara left a comment on a post that went something like this: Whatever you're doing, you're doing it wrong.

I agree. And I sure wish I could figure out what that wrong thing is. Because today apparently I did that mysterious wrong thing again: I found out first hand how painful and debilitating shingles can be. Dang. That's a seriously wrong thing.

Yup. Shingles.

So it appears that my low white blood cell count triggered an activation of dormant varicella zoster virus in my dorsal nerve root ganglion -- they've been hanging around since childhood chickenpox -- which manifested as painful itchy blisters covering the left side of my back, side and chest.

I'd post a picture but it's just gross. You guys don't need to see that.

You can read more about this nasty dumb stupid very poorly timed disease here.

Previously, I didn't understand how severe the pain from shingles can be. I assumed it was simply an irritating and itchy rash. But this pain seems to go straight through my core. So strange. I have developed a new appreciation and sympathy for anyone afflicted. Yikes.

It's a good thing that I did most of my Christmas shopping and decorating and gift wrapping far ahead of my usual schedule. The house looks all festive and there's piles of brightly colored packages underneath the tree.

If I hadn't done that, I'd be in a world of angst right now. Thankfully, at this point all I have to do is take my anti viral drugs, my pain pills, and my gabapentin medications and hopefully sleep for a week until this passes.

My white blood cell count is still below normal. So do me a favor? Think high numbers of whites and very very low numbers of virus for me?

Much appreciated.

This too, will pass.

Thankful

juliaschulia@gmail.com (Julia Oleinik) — Fri, 6 Dec 2019 05:33:00 -0800

I love fall. Especially Thanksgiving. Once again, our holiday was marked by a home filled to the brim with family and friends and lots of good food.

We were fortunate to have beautiful weather.

The preparations were great fun. I bought a new rolling pin, even. It performed admirably and together we whipped out six pies.

My girlies bought a couple of turkey gingerbread kits and assembled them. Aren't they a scream? I just loved them.

And then there's great fun setting the tables for 26 guests. Good thing I had lots of help.

For me, the biggest challenge in putting together a meal of this size is making sure that all of the food is finished, hot, and tasty at the same time. Which, hopefully is also the time that we've decided on for dinner. A schedule strictly adhered to helps.

Twenty six servings of gravy is a lot of gravy.

The last hour before we serve the meal I become a steely eyed and hard nosed general; directing my troops with no mercy. Luckily for me, my soldiers are happily compliant and dinner was served smack dab on time.

Whew.

Yum. Here's a few of the pies.

Lulu was exhausted at the end of the day.

Such a big schnauzer yawn. We all yawned and contentedly napped after. What a great day.

Ah, but I'm looking forward to Christmas coming soon, so took advantage of the many willing hands later that weekend; Thanksgiving was packed away, and out came the Christmas tree.

Marcus found the tree box to be the BEST TOY EVER.

I'm still resting and recuperating after all those shenanigans.

Hope your Thanksgiving was a happy one.

Talk to you soon.

The Moisture Seekers Newsletter: CBD Oil and Sjogren's

juliaschulia@gmail.com (Julia Oleinik) — Wed, 30 Oct 2019 09:10:00 -0700

image found on Wikipedia here.

Members of the Sjogren's Syndrome Foundation (you can become a member and browse their excellent site here) receive a newsletter packed full of valuable information. Volume 37, Issue 09 October 2019 is no exception. Among other interesting topics, the Q & A ASK THE EXPERTS section contained this timely question:

The use of CBD oil has been in the news a lot and I've heard it mentioned to help treat Sjogren's. What is CBD oil, how can it be used to treat Sjogren's patients and has this treatment been approved to be safe?

I thought this was a good question. These days CBD oil has been touted as a cure for any and all ailments. Our grocery store sells it in a prominently displayed kiosk.

Hi Honey. Heading to the grocery store. Need anything? Milk? Eggs? CBD?

Here's excerpts from the in depth answer written by Donald E. Thomas, Jr., MD, FACP, FACR, RhMSUS, CCD.:

With our current opioid crisis along with the increasing approval of the use of medical cannabis in the United States, this is a timely and appropriate question. Cannabis (also known as marijuana) is the most commonly used illegal drug worldwide (at least illegal in most areas). The compound called delta 9-tetrahydrocannabinol (THC) is responsible for its effects that make people feel "high". Another compound in cannabis is cannabidiol, known as CBD for short. CBD does not have the "high" exerting effects of THC but is thought to have medicinal effects partly due to its attachment to cannabinoid receptors. These receptors are located on the surfaces of cells throughout the body to include the brain, nerves, and cells of the immune system. Therefore, it is not surprising that CBD may potentially have beneficial health properties. ..............

...........I have had patients with chronic pain use CBD oil and purportedly report good results, especially for nerve pain (which is common in Sjogren's). However, I am unable to formally recommend it to my patients for several reasons. One big reason is that recently there have been reports of high levels of pesticides and heavy metals (such as arsenic and lead) in many CBD products along with inaccurate amounts of the stated amounts of CBD. This represents on of the biggest problems. Since the federal government makes CBD use illegal, there is no quality regulations imposed on their production and distribution. One of the most important things is that I cannot recommend any treatment unless it has been proven safe plus effective. We just do not have the research to prove either one.

Bottom line: I do believe that it may have potential health benefits. However, until we have more studies to prove effectiveness that outweighs side effects, studies to know its potential interactions with other medications, and that we have regulatory controls to ensure high quality products (devoid of harmful contaminants), I cannot recommend it.
Donald E. Thomas, Jr., MD, FACP, FACR, RhMSUS, CCD

I have included only a few paragraphs from this article, but be sure to head over to the Sjogren's Syndrome Foundation to read it in its entirety.

I guess I won't be adding CBD oil to my grocery shopping list any time soon.

Plastic is my problem.

juliaschulia@gmail.com (Julia Oleinik) — Sun, 20 Oct 2019 14:43:00 -0700

It certainly makes sense: when one's saliva isn't normal, and one's mouth is dry, that one's sense of taste will be altered. Mine included.

So I've noticed this in a whole variety of foods, but usually the changes that I've noticed are a decrease in the intensity of flavors. Occasionally when I'm unusually tired, my sense of the taste of bitterness is exaggerated.

How weird is that?

My newest taste strangeness involves food in plastic bags. Especially baked goods. I went through a phase during which I bought multiple loaves of bread, all of which were packaged in the standard plastic bag. It was an expensive phase since every single one ended up in the trash. I'd sample a slice but all of them tasted bad to me. A hard to describe bad. Mostly, they tasted somewhere between moldy and rotted.

Not enjoyable. It got so bad that I would gag whenever I opened the bag.

I couldn't imagine that the bags were the problem. I'd been eating food from plastic bags for all of my life. Then one day, I purchased bread from a bakery which was packaged in a plain brown paper bag. I tentatively took a bite and was instantly in a state of BLISS.

Yes. My problem HAS been with poly bags. Bakery bread has been my BFF ever since. When I discovered grocery store bread packaged with an inner wrapping of cellophane, my suspicions were confirmed. It tasted great; exactly how I remembered bread tasting before my taste buds went wacko.

I found cellophane food grade bags online for those times when I feel the need and have the energy to bake my own bread. Yum. Here's my latest loaf, recipe from Bob's Red Mill:

Honey Whole Wheat Bread

Ingredients

By Hand

1 cup Warm Water 110°F
2 1/4 tsp Active Dry Yeast (one 7g packet)
1 cup Milk room temperature
1/4 cup Honey
2 Tbsp Oil
2 3/4 cups Unbleached White All-Purpose Flour
2 3/4 cups Whole Wheat Flour or Organic Whole Wheat Flour
1 Tbsp Salt

Instructions

By Hand

1. Pour water into a large bowl or the bowl of a stand mixer and sprinkle yeast over top. Let sit until yeast dissolves, about 5 minutes. Stir in milk, honey and oil. Add flours and stir by hand or with a dough hook until a dough forms, about 1 minute on low.

2. Add the salt and knead dough until it is smooth and springy, about 10 minutes on medium speed.
Form dough into a ball and place in a large bowl lightly coated with oil. Turn dough to coat with oil. Cover and let rise until doubled in size, about 1 hour.

3. Transfer dough to floured surface. Divide dough in half and form into two balls. Preheat the oven to 425°F. Grease two 9 x 5-inch loaf pans. Gently press and shape each ball into a 9 x 9-inch square. Fold into thirds, like folding a letter. Pinch the seam closed and place loaf seam-side down in prepared pan. Cover and let rise for 40-60 minutes.

4. Make three angled slashes on top of each loaf with a knife and place in oven. Immediately reduce heat to 375°F and bake until loaves are golden-brown and sound hollow when tapped, about 30 minutes. Remove from pans and let cool completely on wire rack.

------------------------------

So, y'all don't think that I actually followed this recipe to the letter, did you?

You did? Silly people. Here's the changes that I made to the recipe:

I kneaded a bunch of sunflower seeds (maybe 1/2 cup) into the dough and just couldn't bring myself to use one whole tablespoon of salt. So I used 1 and 1/2 tsp. And instead of making two smaller loaves, stuck the whole batch of dough into my biggest bread pan. As far as waiting until this gorgeous fragrant loaf was cool enough to take a knife to it? Pfffft.

This is indescribably good; especially since I've been on a burst and taper dose of prednisone which causes "put my face into a chocolate cake" carb cravings. Luckily, a slice of this bread quashes my cravings just fine.

Anyone else have an aversion to poly bags? Or other changes to the sense of taste? Share in the comments section below.

You can read more about diminished taste in Sjogren's syndrome here.

Lessons Learned

juliaschulia@gmail.com (Julia Oleinik) — Fri, 18 Oct 2019 15:00:00 -0700

It's been 16 years since my diagnosis.

Wow.

Seems like it happened yesterday, but at the same time, I feel as though it's been a major part of my whole life as well. Y'all know what I mean. I feel as though I have no surprises left for me in this old autoimmune disease riddled body, and yet......I feel strangely as though I understand absolutely nothing about Sjogren's syndrome.

On days that I feel optimistic, when this paradox occurs to me, I simply throw up my hands and laugh. And think something along the lines of Ah well, it is stuff like this that keeps life interesting.

Then on days like today when I'm struggling with chronic decade-long issues, I throw up my hands and think something far less cheery. You can insert your own feelings here since I know that y'all deal with the same things.

It is on days like today that I can appreciate the value of those sixteen years behind me in managing this illness. Today, my energy is low, my joints are painful, and I'm teetering on the edge of a POOR ME episode. Disgusting.

But based on my experiences over the last sixteen years, today I am able to step back from the abyss of self pity because I have been here before. Which is both unfortunate as well as a good thing. I've had more days like today than I care to count, but I have also had innumerable episodes during which I have realized that these experiences don't last forever. That I can come out on the other side of gloom, doom, and discomfort and survive. To not only survive, but to thrive in my own way.

One doesn't come by those types of realizations without years of experiencing these rather crummy situations. Makes me wish that current me could have made a time travel visit to newly diagnosed me brimming with tips tricks and encouragement.

BUT.....

Newly diagnosed me would probably have looked at current me with skepticism and disbelief. I would have loftily informed current me that I was not going to let this disease limit any aspect of my life and that surely in 16 long years science would cure autoimmune disease, for cryin' out loud.

Yeah. Bratty Inner Child Julia has been around since I was born, I suspect.

So I suppose it's actually been necessary for me to slog through all these years; to experience it all.

Bah.

But here I am. And it's going to be OK. I mean, if I didn't have a disease that occasionally anchors my butt to my recliner I sincerely doubt that THIS EPIC EVENT COULD HAVE HAPPENED:

Did you KNOW THAT OCTOBER IS GODZILLA MONTH on the Turner Classic Movies channel?

Which forced -- yes, forced -- me to drag Terese and Greg and John to our living room last Friday to celebrate. Because Godzilla is awesome. And because they knew I just didn't have the energy to go out carousing that night.

And also forced John and Greg to wear GODZILLA hats while sitting through not one but TWO Godzilla goodness-filled movies.

I mean, I can thank Sjogren's for that fun filled evening.

Lesson learned.

Snapshots

juliaschulia@gmail.com (Julia Oleinik) — Fri, 27 Sep 2019 13:55:00 -0700

Thanks to everyone that asked how life has been treating me this month. I'm happy to report that although a few issues remain -- and actually always will -- I'm doing fine. Just ducky, in fact.

I'll update y'all by the easiest method I know: pictures.

Marcasaurus, my amazing grandchild, continues to develop skills at lightning speed. Here he demonstrates his toe-chewing expertise. Wouldn't it be great to be as limber as this??

He also has shown an acute interest in climbing. Anything. And everything. So in the interest of providing a safe climbing toy, we bought this way cool baby play structure. IT HAS A PERISCOPE.

I've been on a quest for fall type decor for our new house. Unable to find exactly what I've been imagining for a front door wreath, I Frankenstein-ed together several items found at various stores and plunked it on the door. I love it. I hope it holds up so that I can use it again next year.

While in a crafty mode, I decided to keep it going by creating a minimalist twig shelter for my Saint Francis. I think he'd approve since he preferred to live outdoors. No warm cozy house for the saint in real life; and this certainly is not. I talked John into dusting off his boy scout skills and lashing together the twigs for me.

Oh, hey. This was exciting. We've been piling and piling stuff on the burn pit all summer, but because of the burn ban that's been imposed in our county, we haven't been able to get rid of all those blackberry vines and weed trees and dead branches. But the ban has been lifted so John and I pulled up some lawn chairs, dragged a garden hose out there in case of emergency, and lit the thing. I was expecting this big POOF of flame, but ah well....all we got was a slow and steady burn. Which, I guess is the best way to do it. We don't need a forest fire.

I did have one really traumatic episode, though. Brace yourself. It's brutal. AND IT HAPPENED MORE THAN ONCE.

So. All of these white plastic tubes are in my top vanity drawer; and I use all of them every day, just in very different places. If you catch my drift.

Only one is toothpaste.

Yeah. So in the morning, when I'm all dopey and still half asleep and I blindly thrust my hand into that drawer, I have a one in four chance that I'll grab the toothpaste; and without examining further, blob the contents onto my toothbrush and stick the whole thing into my mouth.

I just want to say here that Kenalog steroid skin cream tastes awful. As does athlete's foot lotion, and Metrogel topical rosacea gel.

You can take my word for it since I now have first hand knowledge. I think I'm going to take a marker and scribble something on the back of all these tube clones.

I wish I could share a picture of my newest friends here. I haven't been able to snap one yet, but hopefully soon. We have a pair of ravens that live in one of our trees. I've named them Ramon and Ramona. They're fascinating! Ramon has a deep croak, and I can tell the difference between his and Ramona's voice -- hers is slightly higher and she doesn't seem to be able to make as many different sounds. Ramon can croak and caw, but he also makes these really bizarre noises too. One sounds just like water dripping into a bucket. Another is some kind of electronic noise. I've been reading about how intelligent ravens are. I hope they figure out how much I like them. I keep trying to imitate their croak. I'll bet they just crack up when they hear my pathetic sounds.

Wonder what a raven laughing sounds like.

I decided to decorate my mantle with ravens for this Halloween. In honor of Ramon and Ramona.

Anyway, that's how things are going here. How are you?