Saturday, November 14, 2020

It Could Have Ended Much Worse

 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? 

Monday, October 5, 2020

Autoimmune Disease is Not For Wimps

 

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



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?  

Saturday, August 8, 2020

And now for something completely different

 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. 

Thursday, July 30, 2020

The Love it and Hate it Drug

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. 

Tuesday, July 14, 2020

Brenda Doesn't Charge Nearly Enough

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.

Friday, June 26, 2020

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

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.

Monday, May 18, 2020

A Therapy Merry Go Round


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?

Thursday, April 2, 2020

Lockdown without losing my marbles

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.

Thursday, March 26, 2020

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


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.

Friday, March 13, 2020

COVID-19 and Sjogren's

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.
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. 

ShareThis