When does a crash become a flare?

For me, a crash became a flare about about three days ago. And although I loved the resulting photos, spending a couple hours sitting outside in the cold and wind may have been the incident that pushed me over the edge.

My plan of attack? Going to spend a few more days prone. Flat. Horizontal. Drinking lots of fluids, taking ibuprofen for the weirdo chills that plague me, and watching dopey tv from bed. 

Dumb stupid autoimmune disease. 

Over the Moon

Did y'all get a chance to see the lunar eclipse on Sunday night?  John and I bundled up, sat on the deck and eagerly waited for moonrise. I had set up Canon's tripod and the shutter remote and was Googling f stops and iso settings specific to photographing the moon. There were oodles of online articles assuring readers that if blah blah blah blah, then the results would be fantastic. So I dutifully adjusted Canon's settings and waited.

Dusk fell. What a beautiful evening. 

Eagle eye John spotted it first and I began snapping eclipse photos away like mad. But to my horror, every photo was completely black. No beautiful moon. Nada. 

Drat. 

I frantically checked to see if I had left the lens cap on, but nope. Not the problem. So I began experimenting with various changes to everything that I could think of on poor Canon. I have absolutely no idea what I did, but gee whiz. SOMETHING worked. 

Oh, my. I wasn't prepared for how magnificent it all was. And all too soon, the glorious blood moon was gone. 

I had planned on taking more photos as the moon's face reappeared, but it was getting seriously cold out there on the deck, even though I had put on three layers of sweatshirts. So I grabbed my gear and headed indoors. 

Such a fantastic experience; and I'm thrilled with the photos. But in all honesty, I have absolutely no idea how I got them. I wish I knew what settings I actually used. I'm going to go back to review those articles that promised perfect photos with their suggested settings. Pffffftttt. 

I'm such a lucky duck. 

Re-Post: Chronic Illness and Depression

I don't often re-publish my old posts, but thought it may be time to put this one up again. I've had several recent conversations with folks (both autoimmune and otherwise) who have been struggling with symptoms of depression, and thought this post may be of some help and had some good links to solid information.

I wonder if the change of seasons precipitates increased depressive symptoms?

Chronic Illness and Depression 

I was interested in the title of a recent review by the Cochrane Database of Systematic Reviews published on March 17th, 2010: Antidepressants Ease Depression in Physically Ill Patients. You can read a summary of it's findings here. The review concludes:

Based on their review, the authors recommend that antidepressants "be considered for the treatment of depression in physical illness. In the absence of data on comparative efficacy and acceptability in particular physical illnesses, choices of antidepressant should take account of patients' preferences, symptoms, and possible interactions with other medications."

I am a bit mystified by the necessity to encourage physicians to treat depression in patients struggling with a physical illness. It would seem obvious that a chronic illness and the resulting physical, emotional, financial, and lifestyle changes that accompany it could be a major factor in the development of depression. I would hope that most physicians would not need this prodding by the Cochrane group to view the symptoms of depression equally as important as the physical ailments in their clients.

Speaking from experience, I know firsthand about the benefits of the judicious use of SSRI antidepressants early on in the battle with chronic disease.

I came to my tenuous acceptance of chronic disease in stages, as I suspect that most of us do. In the year preceding my diagnosis, it seemed that all I really wanted was an answer to the question: What is making me feel like crap?? What?? What??? What????? I thought that no matter what it was, having a diagnosis in hand would eliminate my emotional distress, and to a certain extent that was true.

I remember sharing the news of my diagnosis with a friend. She expressed dismay and shock, but also disbelief as I said, "I'm lucky. It could be much much worse! I really am lucky." But I was sincere: I was so concerned that my problems were related to other, more incapacitating diseases. To realize that Sjs would be a life-long, yet not life-shortening disease seemed to be good news at the time.

My next phase in acceptance seemed to be defined by my motto : To win the war, know the enemy. I spent the year picking my doctor's brains, poring over rheumatology textbooks, reading online medical journals, and immersing myself completely in the cellular and pharmaceutical details of this disease. And although armed with valuable knowledge, I gradually came to the realization that this battle would last for my entire life.

With that realization, things changed.  It was a year after diagnosis, maybe a year and a half. By then, Dr. S. and I had established a solid patient/doctor relationship, I was relatively stable on a medication regime, I had a basic understanding of Sjogren's syndrome, I had made the decision to quit working, and life was beginning to settle into a new routine. The overwhelming reality of my situation slowly made itself clear - this is what my life is going to be like. Sjogren's is not going away.

After two years in which life was a flurry of doctor appointments, diagnostic tests, labwork, referral to a variety of specialist physicians, and more appointments, gradually everything just.......stopped. I found myself with enormous amounts of time on my hands. I had no idea what to do with myself. My life had been so busy for so long that I was at a total loss as to how to fill my days.

I tried to continue some of my favorite activities such as singing in a choir, but it soon became obvious that my vocal cords were just not what they were before autoimmune disease. I croaked my way through one concert while sweating profusely from the exertion of standing for a lengthy period of time, and afterwards reluctantly admitted that my enjoyment of music would have to be found in listening, not creating.

I tried to keep busy in the yard and garden, having always loved mowing, digging, weeding, planting and all the other activities outdoors, and soon realized my limitations in physical exertion and sun exposure.

The four walls of my house began to close in around me. I determined that if I were to spend more time indoors, well, then, the indoors had better be an attractive and tidy place to be. And discovered that scrubbing and vacuuming and dusting devoured enormous chunks of my limited amounts of energy.

At this point, I found myself just giving up. Being an all-or-nothing kind of person, it seemed to me that if I couldn't live my life the way I wanted it to be, I would.....I would....well, that was the part that I hadn't figured out. So I spent countless hours just staring at stupid television shows while moping around in sweatpants and ratty t-shirts. I mourned the loss of who I used to be. I remember feeling so overwhelmed and so sad. I would cry - and then become angry and frustrated because even my tears had changed due to Sjogren's.

John was so loving and so supportive during this time, which made me even more upset that I couldn't seem to get myself together. I had a good marriage, great kids, a caring circle of friends. People with that kind of support had no business feeling sorry for themselves, did they? And so I added guilt and shame to my already overloaded psyche.

Dr. S. was still seeing me every three months at this point, and during one of her office visits, she said, "How are you adjusting to all this?"

I didn't say a word. I didn't know what to say.

"Correct me if I'm wrong, but you seem pretty unhappy right now."

I told her that of course I was unhappy. I really didn't like autoimmune disease and I wanted it all to just go away.

She scooted closer to me, put her hand on my shoulder, looked me squarely in the eyes and said, "I can't heal you. Sjogren's doesn't just go away. We can manage it, but you need to come to some kind of acceptance with that."

Which prompted a major meltdown. Of course.

Dr. S. just kept handing me tissues until I finally got myself together, then suggested that I needed some help coming to terms with chronic illness. She was supportive, compassionate, and goal oriented, bless her. After more discussion and with my approval, we agreed on a plan of action: she prescribed an antidepressant for me and set up an appointment with a therapist. I left her office feeling as though an enormous weight had been lifted off my shoulders.

Thank goodness that Dr. S. was not one of those physicians that needed a reminder to treat depression in patients with physical illnesses!

I saw my therapist for about a year, during which we discussed coping mechanisms and strategies with which I could carve out a new and acceptable way of life. As I was slowly able to put some of these in place, I began to feel better. Much better. I began to see that even with Sjogren's syndrome, I was still Julia. A changed Julia, yes, but still basically Julia. With help, I was able to see that being Julia is not defined by autoimmune disease. I am Julia first, and a Sjoggie a distant second.

Over the following year, my therapist gradually tapered and then discontinued my SSRI antidepressants. I have an open-ended referral available to me if I ever feel the need to seek additional help.

Some days are still hard, of course. Some days I still mourn the loss of my old self, as anyone who has been reading Reasonably Well for any length of time knows. I'm so glad that the good days far outweigh the bad ones. And if I ever find myself heading down into that spiral of sadness again, I know that help is available for me. In this, I am fortunate.

If you are struggling with depression or an adjustment disorder as a result of chronic illness, talk to your doctor. If he/she has not initiated the discussion, begin it yourself.

You can read excellent discussions about the relationship between chronic disease and depression here, from Swedish Medical Centers in Seattle, WA, [9/28/15 Sorry. Link no longer works.] and here, from the Western Journal of Medicine.

Let Us Eat Cake

I think I mentioned in an earlier post that I have been eyeing a recipe for coconut cake for awhile. I've been waiting for an opportunity to share it with someone after it was baked -- because if I made an enormous cake like this one for just John and I, I'd have far more than my fair share.

So last night we invited Terese and Greg to go to dinner with us and then have cake and decacaffe coffee at our house afterwards.

Oh, boy! I thought as soon as I opened my eyes yesterday morning. Time to BAKE. I dressed in a hurry, slugged down my pills, and munched a bagel as I reviewed the recipe and ticked off the ingredients required.

All accounted for, it seemed. Project Coconut was a go.

I've never made one of these beauties before, so I scoured the internet. After seeing the same recipe on three different websites it certainly appeared that at least a few bakers out there had success with that one. I hit the print button, and we were off.

Mmmmm. I love the smell of a cake in the oven.

Overall, the process went fairly smoothly. I'm going to pretend the "I almost dropped one layer and broke off a corner" incident never happened. Frosting fixes everything, after all.

Wonder if it will taste as good as it looks? I'll keep y'all posted.

Recipe found here, on Epicurious. com.

Saturday Smiles

I just love Pinterest. Daughter #1 calls Pinterest a rabbit-hole much deeper than the one found in Wonderland.

Ever search on Pinterest for "chronic disease funnies"? Guys. If you ever need a mood boost, do. it.

Here's today's batch of smiles.

Start The Weekend With This

Friday frazzle getting you down? Need to start unwinding now so that when Saturday morning rolls around y'all will be in the proper weekend frame of mind?

Yes?

Hit play on this YouTube vide. Ahhhhhhhhhh.....

They Understand

Image found here. 

Well, shoot. I dislike days that don't include everything that I have planned. Like yesterday: I was looking forward to attending my Sjogrens Syndrome support group. I took a leisurely morning breakfasting and getting dressed and drove over to the meeting with time to spare.

Extra time was useful since road construction forced me to take a detour. Yay for Google maps. So I walked into the meeting just as it was starting. Whew. As we began to get through the agenda, I found myself wiping perspiration off my face, so I took off my sweater and rolled up my sleeves thinking that I couldn't possibly be having an energy crash. Must be from the room temp, I  decided. But when my face began to feel cold and I could feel sweat trickling down my back, I couldn't ignore the fact that my batteries were just about emptied. And if I continued to deny that it was happening, I wouldn't be in any kind of shape to maneuver through Portland traffic to get home.

I pushed back my chair and whispered, I have to leave. I am SO done.... to the gal next to me. And of course, she nodded sympathetically. I couldn't help but feel embarrassed as I waved good-bye to everyone; which was ridiculous since these people have all known exactly how I felt.

John said that I should have stood up and announced, Goodbye all! I have SJOGRENS SYNDROME!

Actually, that would have been rather humorous.

So while wiping the sweat out of my eyes, I hurried to the car and headed home after which I collapsed into bed for the rest of the afternoon. I'll bet many of you have had to bail out on activities before, too. I knew that I was doing the right thing by being responsible about making sure that I was able to drive home safely, but dang. It's never fun to be the responsible one.

Dumb stupid Sjogren's syndrome....

Can you still have a good, long, fun life?

Image found on Wikimedia

Yesterday, a newly diagnosed Sjogren's patient posted a comment that I thought deserves a post all of it's own. Remember when you first realized that you had Sjogren's syndrome? And when you thought, "What the HECK is Sjs?" And when you wondered if this diagnosis meant that you should panic? Anonymous must be feeling the same way. Kate Stout left an excellent response, but what else would you add if you had a chance to sit down with anonymous over a cup of coffee? Here's her question:

Anonymous:Just found out I have Sjogrens. Bit of a shock - I'd never heard of it. I'm a 32 year old female........ My questions are a) Does anyone else with Sjogrens have associated ITP/platelet issues? And b) Generally do we all get by? I mean we might have day to day issues and flare ups occasionally but it's liveable right - having Sjogrens? You can still have a good, long, fun life? The more I Google it the more frightening it seems. Are there any groups I should join? 

Kate Stout said: Anonymous - two excellent resources are the Sjogren's Foundation, http://sjogrens.org, and a very knowledgeable and friendly support group called Sjogren's World at http://sjogrensworld.org. 

Everyone's path varies. Some people have "just" dry eyes and mouth, some have occasional fatigue, and some have a large number of troubling symptoms. There's no way to know what your path will be, and after the initial shock is over, you'll find a way to deal with whatever your particular details are. 

Pour yourself a cuppa your favorite beverage, grab your phone or computer, and share your your valuable experiences and information that would be important to a Sjogren's newbie in the comment section below. 

Something is Fishy

Image found here. 

I hate it when my taste buds go ga-ga. Do yours ever get seriously weirdo? It seems as though when I'm at the bottom of the energy barrel, which is where I am over the last few days, my sense of taste goes either missing or out of whack.

For example.

I was crunching a few potato chips yesterday. And they tasted like sardines.

SARDINES?!

That was new. And seriously strange. Most often when my sense of taste just doesn't seem right, everything has a bitter aftertaste. But like sardines?

The Sjogren's Syndrome Foundation addressed sense of taste in one of it's Tip Tuesdays, found on the SSF Facebook page, here. While I found the tip useful in that it validated my experience, the numerous comments that followed were even more interesting.

Tip Tuesday: A diminished sense of taste may occur with Sjögren’s because of the lack of saliva. While there is no specific treatment for taste disorders found in Sjögren’s, using liquids to wet the food in your mouth may help increase the taste. 

We encourage you to share this tip on your page and comment below about your own experience(s) with this tip. Continue reading comments here. 

Readers shared their experiences which included tasting dirty wet shoes, salt, strongly sweet, and many other unusual sensations.

Do your tastebuds ever go crazy?

Baking My Cares Away

Next stress-relieving project? Baking the perfect coconut cake. Image found here. 

I was grocery shopping with my friend Susan Saturday. I was having a low energy day so was zipping around in the store scooter shopping cart.

"Well look at you!" Susan laughed. "You're pretty good on that thing."

I was making figure eights around her in the produce section. Good thing it had wide aisles. I told her that I had years of practice and after wiping out an entire display of Foster Grant sunglasses awhile back, I had sharpened my scooter skills.

As I zipped over to the frozen foods, my skirt fluttering in the breeze (I may have learned better maneuvering skills, but this didn't mean I had learned the value of slowing down any), it occurred to me that any bit of embarrassment on my part when I used store scooters had vanished. Completely. Nada.

I think this is a huge step in my struggle towards acceptance of the chronic nature of autoimmune disease.

One small step. But I was also thinking about how far I still had to go in this adjustment journey, when Susan made an exceptionally insightful comment while we were examining the different brands of flour. I had been wondering aloud what my next baking adventure should be when she said,"So, I've noticed that you are really baking up a storm lately."

Sure have.

"Well, so...........whenever I feel anxious or stressed about something I do certain things. Like playing Solitaire compulsively on my computer. Or I shop a lot. Is baking that type of thing for you?"

I put the package of chocolate chips down.

Girl. You're so observant. Yep. Baking has always been a stress reliever for me. I've always been that way.

"So are you stressed out now? About anything in particular?"

Sigh. Well.........yeah. It seems that every now and then I need to cycle through a really high anxiety period about the future and me and my dumb stupid disease. Like, when our friend became a grandmother? I was very happy for everyone, really. But I began thinking ahead to the time when hopefully I will hold my own grandchild in my arms. What if I am asked to babysit and I have an energy crash? And John isn't there? And something bad would happen to the baby? Or.....

Susan put her hand on my arm. "Oh, gee. Yeah, I can see why that would worry you."

Thanks, girl. It's just one of those things. We smiled at each other and moved on to find the next item on our shopping lists.

Later at home, I thought about what Susan had said. She was right on target. I DO find real stress relief in my kitchen. I think it's because when I'm baking something, I find such pleasure in exploring recipes and making ingredient lists, and then slapping on my apron and rolling up my sleeves.

And, of course eating whatever I pull out of the oven. Yum.

Most of the time I'm successful in my quest for yumminess. And being successful at SOMETHING is a good thing. A very good thing. An anxiety-reducing thing.

Someday I'll be baking cookies for my grandchildren. Excellent cookies.

Sweets

My blackberry cupcakes were a very tasty success. Yummy and sweet.

But.

Sweetness far more authentic was found in this precious one week old bundle of baby boy.

Lucky me -- I was able to hold them both. What? You silly persons. No. Not at the same time.

Tsk.

Here's the cupcake recipe as promised, found on the fabulous The Brewer and the Baker food blog.

Blackberry Cupcakes with Blackberry Buttercream Frosting

Ingredients

• 3 6 oz packs blackberries
• 1/3 cup milk, at room temperature
• campaignIcon
• 6 large egg whites, room temperature
• 2 tsp lemon juice
• 2 1/4 cup cake flour, sifted
• 1 3/4 cup sugar
• 4 tsp baking powder
• 1 tsp salt
• 12 Tbsp unsalted butter (1 1/2 sticks), softened

For the frosting:

• 2 sticks butter unsalted butter, softened
• 1/2 tsp vanilla
• 1/4 tsp almond extract
• 5 cups confectioner’s sugar
• 1 Tbsp meringue powder
• pinch of salt
• 1/4 cup blackberry puree

Instructions

• Preheat oven to 350 degrees and prepare two muffin pans with liners.
• Puree blackberries in a food processor or blender. Scrape into a fine mesh sieve set over a bowl. With a rubber spatula, work the blackberries through the sieve, leaving seeds behind. Remove 1/4 cup of puree for the frosting. Your mileage may vary but you should have ~2/3 cup of blackberry puree leftover.
• In small bowl, combine puree, milk, egg, lemon juice, and mix with fork until well blended. In bowl of stand mixer, add sifted flour, sugar, baking powder and salt and mix to combine. Continue beating at slow speed and add butter. Mix until combined and resembling moist crumbs.
• Add liquids and beat at medium speed for about 1 minute or until full and evenly combined. Stop mixer to scrape down the sides of the bowl and beat for 30 more seconds. Fill cupcake liners ~3/4 full.
• Bake for about 20 minutes or until a toothpick inserted in the center cupcake in each pan comes out clean. Let cupcakes cool in pans and then transfer to a covered plate.
• To make the frosting, cream butter and extracts until smooth.
• Mix in confectioner’s sugar, meringue powder, and salt and beat 2-3 minutes on high.
• Add blackberry puree and beat for an additional minute. Adjust consistency, if desired, with additional confectioner's sugar or water.

Notes
Yields: 24 cupcakes
Adapted from Cook's Illustrated Classic White Cake
Estimated time: 45 minutes

http://www.thebrewerandthebaker.com/archives/1320

You know it's been a good day when there's blackberry frosting on your knee brace.

Dang. It's hard to measure flour when you have a monster tremor.

We're switching up a few of my meds for restless leg syndrome and neuropathy in my legs and feet; one of those maneuvers that require me to make a chart since some doses are tapering downwards and the other gradually rising. My internal medicine doctor told me frankly,"You're going to feel kind of strange for about two weeks. So hang in there. But if you feel uncomfortable just give me a call."

So far the only thing that I have noticed is that my tremor - which I've had for awhile anyway - has been amplified big time. This makes measuring and sifting baking ingredients really interesting.....and has resulted in a totally trashed kitchen. I'm making blackberry cupcakes from a recipe that I haven't tried before. I was interested because it uses blackberry puree, which I still have about a half gallon of in my freezer. If they taste good, I'll post the recipe for y'all. If the cupcakes taste as good as the batter does, this may be a keeper recipe.

I started to take pictures of the process, but I was wobbling so much that the first ones were pretty fuzzy, hoo boy.

Yay for balancing phone cameras on a non-tremoring surface.

NeuroLogica Blog: Trump on Vaccines

Image found here. 

I watched the debate on CNN Wednesday night, and I'm not going to discuss Republican or Democrat political ideology here; but the nurse in me simply can't sit on my hands and be silent in my opinion (because I can't talk without waving my arms around) of Donald Trump's comments about his belief that vaccinations are the direct cause of autism.

I would disagree with Mr. Trump.  Dr. Steven Novella, author of the blog NeuroLogica and an academic clinical neurologist at Yale University School of Medicine, has written a far better response to Trump's assertions than I ever could:

I generally don’t cover purely political issues on this blog, but the second Republican primary debate from last night ventured into the area of vaccines and autism. Donald Trump has said in the past that he thinks the current “epidemic” of autism is caused by vaccines. He was challenged on this position during the debate, and face palms ensued.

Orac, perhaps presciently, gave a good recap of Trump’s anti-vaccine nonsense just yesterday. In 2007 Trump said:

“When I was growing up, autism wasn’t really a factor,” Trump said. “And now all of a sudden, it’s an epidemic. Everybody has their theory. My theory, and I study it because I have young children, my theory is the shots. We’ve giving these massive injections at one time, and I really think it does something to the children.”

That is pretty much exactly what Trump said during the second debate, almost word-for-word. This demonstrates several things about Trump, in my opinion. First, he feels comfortable forming his own opinions, based on nothing but casual observation and anecdote, even on complex scientific issues, without adequate information. The fact that the scientific community has come to an opposite opinion does not even seem to give him pause. Finally, he has learned exactly nothing on this issue over the last 8 years – nothing. He has added no depth or nuance to his position, let alone correcting his factual errors......

You can read the rest of his post here.

New York Times Well: Postural Orthostatic Tachycardia Syndrome

Found here.

One of the Sjogren's message boards that I frequent has had a very interesting discussion thread about Postural Orthostatic Tachycardia Syndrome (POTS), a syndrome that affects the autonomic cardiovascular system. It's of interest to us with Sjogren's and other autoimmune diseases since it can accompany Sjogren's syndrome. Thanks to Sarah Schafer, MD for providing information about POTS and the link to this article from the NYT Well blog. This from Dr. Schafer:

.....[POTS] It is significant that this problem is often overlooked or by rheumatologists. Usually because they are not trained to recognize it. Cardiovascular  dysautonomias  may greatly contribute to fatigue. One of the most disabling of these is POTS, which is often overlooked until it becomes severe.  Postural tachycardia syndrome is not simple orthostatic hypotension (stand up and get light headed).  It is a pooling of the blood in the lower extremities, causing dizziness, rapid heart rate, and sometimes even fainting.  There are good management tools, so it is important to get it diagnosed.   You need to find a doc familiar with it. It is a fairly common condition , yet many docs not trained to recognize. 

I had it mildly for years but not diagnosed until it was severe enough that I could not stand for even 5 minutes. There is a great NYT article in the health section about this..[found here]. 

...Sjogren’s is the # 1 autoimmune disease associated with POTS.   It is also seen frequently in teenagers, and affects girls more often than boys. (Bolding mine.)

Here's an excerpt from the NYT Well piece, but head over there to read it all:

Think Like a Doctor: Swept Off Her Feet Solved

By LISA SANDERS, M.D.
FEBRUARY 12, 2015

On Wednesday, we challenged Well readers to take on the case of a 21-year-old college student with chronic headaches who suddenly became too dizzy to walk. She had a medical history that was complicated by back surgery and a subsequent infection, and chronic headaches after a car accident. More than 300 of you wrote in with suggested diagnoses, but only a handful of you noticed the clue that led the medical student who saw the patient to the right answer. 

The cause of the young woman’s dizziness was… 

Postural tachycardia syndrome, or POTS. 

The first reader to make this diagnosis was Theresa Baker, a retired bookkeeper and mother from Philomath, Ore. She said she immediately recognized the disorder because her young niece has suffered from it for over a decade. Her episodes of dizziness and fainting had started when she was just 13. Well done, Ms. Baker! Continue reading here.

I Believe My Lumberjack Days are Done for the Year

It's amazing what one day of rest and one entire night's worth of sleep will do for a person. I felt recharged enough to actually shower and dress and do a few errands yesterday.

Apparently John was well rested as well, because when he came home from work he told me that I was going to be a lumberjack again.

Reallly? This time in a skirt, sweater AND a fabulous scarf??

"Yes", he said. And he was right - this time all I needed to do was drive our SUV forward by about ten feet.

Lulu said I did a terrific job.

Woo hoo! I AM a lumberjack and I'm OK!

Re-Charging

After a few weeks that have required higher amounts of my energy, yesterday my body sat me down and we had a "Come To Jesus" moment. It went kind of like this:

Julia's Body (JB): Hey! You!

Me? You talkin' to ME?

JB: Well, duh. Sit down.

Plop.

JB: Have you been paying any attention at all to how I have been feeling for the last couple days?

Well....

JB: No. No, you haven't. So I'll enlighten both of us: Crummy. I feel crummy. Tired. On the verge of crashing. My nose and face are cold, Missy! You know that means my reserves are nearing empty.

I guess you're right....

JB: No kidding. And there's lots of other stuff going on here. I suggest you take a minute and get a grip on your condition. Well?

OK. Let's see. I feel clammy, my face feels icy, my tummy is upset, and you're right. Lots of other symptoms and signals going on that need attention. But speaking of attention, I want to go do a few errands. I'm supposed to go to a choir practice, and I really should...

JB: Girl. Don't make me take charge here.

You mean?

JB: Yes. If you don't behave yourself and start paying more attention to me, I'm going to have to release...

No! No! Not that! I promise I'll be good!

JB: .....I will have to release.......THE DREADED CRASH.

*dramatic music*

Sigh. I'm heading to bed. See y'all tomorrow.

Watch This Commercial Just Because

A daughter missing her astronaut daddy? A car manufacturer needing a publicity stunt?

Well played, Hyundai, well played.

He's At It Again

Tell me the truth here, people. Honestly. I need to ask y'all a question: Is it just my husband, or are your men like this? Do they ask you to do bizarre things when you least expect it?

I came home from coffee with the neighbor gals yesterday. John met me at the door and told me to come outside. So I did. To see this:

This thing was a BEAST. 

He told me that I needed to help him take this tree down. (It's been sick for a long time.)

See? 

Really?! I asked in disbelief. Now? But I'm wearing a skirt!

"You don't need work clothes. I used to do this with my dad when I was only ten years old," he said. "So I know you can handle this."

What exactly are we talking about here? 

"You're going to pull down this tree."

Say WHAT??

"You'll be perfectly safe and this will be easy, I promise."

Um....OK. I walked over to the spot to which he directed me and took the rope that he thrust into my
hands.

So what do I do? I eyed him and the pulley contraption suspiciously.

"Just start walking down the hill by the blueberries, and pull the rope taut behind you as you go. You won't have to pull very hard. I've got a block and tackle set up to do the real work. When the tree comes down you won't be anywhere near it. I'll be here by the tree with my chainsaw." He pointed to the wedge that he had already cut from the trunk. "Start walking!"

Now? This time I eyed him dubiously. I eye my husband in a variety of ways; often several times a day.

"Yes! Now!" *chainsaw starts doing it's thing* "GO, JULIA! NOW!"

So I walked carefully down the hill, pulling the big black rope with me. And what do you know? This thirty foot monster tree came crashing down exactly where John had told me it would.

Holy cow. It worked! 

"You're quite a lumberjack, babe!" he exclaimed as he fired up the chainsaw again and began lopping off tree limbs.

John loves his chainsaw. And yes, I make him wear protective eyewear...

I had to admit that he was right: I was. A lumberjack in a skirt wearing a dumb stupid knee brace.

SSF: Eating Tips for Dry Mouth Patients

Check out the latest Sjogren's Syndrome Foundation's newest Patient Education Sheet:

Patient Education Sheet
Eating Tips for Dry Mouth Patients

• Avoid foods and beverages at high temperatures. Select warm, cool or cold itms instead.
• Steer clear of highly spiced foods, as these can irritate the mucosal lining of the mouth.
• Avoid carbonated beverages, alcohol, natural citrus juices, as these may cause burning mouth.
• Test your tolerance for citrus, such as oranges, lemons, grapefruits, kiwis, pineapples and strawberries. Acidic foods can irritate the mouth and erode enamel.
• Avoid eating hard, dry foods; or take small sips of water to help break them down.
• Use sauces when cooking and whenever possible to help with swallowing.
• Try cooking meats wrapped in foil with sauces and vegetables added to seal in moisture.
• Stew meats or cook as a pot roast, as these methods make the meat easier to swallow.
• Avoid cooking meat directly on the grill or fringe foods, because these methods can create hard crusts.
• Select chicken or turkey legs and thighs, as these tend to contain more moisture compared to drier breast meat.
• Always choose soft cuts of meat and soft cheeses, including cream cheese.
• Try soft foods such as casseroles, shuffles, puddings, yogurt and scrambled eggs.
• Avoid sugar to prevent cavities. If consumed, brush teeth immediately or at least rinse your mouth with water.
• Increase saliva with one of two FDA-approved prescriptions: cevimeline (Evoxac) or pilocarpine (Salagen).
• Check out other resource sheets with tips on protecting your teeth and mouth at www.sjogrens.org. Go to "About Sjogren's" and then click on "Brochures and Resources Sheets." Keeping your oral cavity in good shape will help you better cope with eating. 

For more information on Sjogren's, contact the Sjogren's Syndrome Foundation at: 6707 Democracy Blvd, Bethesda, MD20817  

800-475-6473  www.sjogrens.org  ssf@sjogrens.org

Chronically Optimistic

I wish I remember to whom I should attribute this image, but here it is. And it makes me smile.

Journal of Rheumatology: Longterm Safety of Rituximab in Treatment of RA

Image found on Wikipedia

As someone who has received rituximab infusions in the past, my interest was piqued when I saw this published online August 15 in the Journal of Rheumatology: Longterm Safety of Rituximab: Final Report of the Rheumatoid Arthritis Global Clinical Trial Program over 11 Years; By Ronald F. van Vollenhoven, Roy M. Fleischmann, Daniel E. Furst, Stuart Lacey, and Patricia B. Lehane

Abstract:  

Objective. Final evaluation of the longterm safety of rituximab (RTX) in rheumatoid arthritis (RA) up to 11 years. 

Methods. Pooled observed case analysis of data from patients with moderate to severe, active RA in a global clinical trial program. 

Results. As of September 2012, 3595 patients received a mean of 4 courses (range 1–20) of RTX over 11 years [14,816 patient-years (PY)]. Of these, 1246 patients had > 5 years of followup (8970 PY). A pooled placebo population (n = 818) was included in the analysis. The overall serious infection event (SIE) rate was 3.76/100 PY (2.71/100 PY in patients observed for > 5 yrs) and comparable with rates reported previously at 9.5 years (3.94/100 PY and 3.26/100 PY, respectively). SIE rates continued to be similar before and during/after development of low immunoglobulin levels, and serious oppor- tunistic infections remained rare. Rates of cardiac events remained consistent with previous analysis and with rates in the general RA population. No increased risk of malignancy over time was observed. 

Conclusion. This final report demonstrates that RTX remains well tolerated over time and multiple courses. No new safety risks were identified and there was no increase in the rate of any types of adverse events with prolonged exposure to RTX during 11 years of observation......Continue reading here.
(J Rheumatol First Release August 15 2015; doi:10.3899/jrheum.150051)

Medscape.com ran a good article explaining the specifics of the clinical trial:

Rituximab Safe for Up to 11 Years in Rheumatoid Arthritis

Janis C. Kelly

September 01, 2015 

Rituximab had a consistent safety profile through multiple courses used in treating rheumatoid arthritis (RA) during 11 years of observation and was not associated with excess infection rates, cardiac events, or malignancies, researchers report in an article published online August 15 in the Journal of Rheumatology. 

The analysis "affords rheumatologists a higher level of confidence" in the safety of prolonged and repeated peripheral B cell depletion in treatment of RA, Ronald F. van Vollenhoven, MD, from the Unit for Clinical Therapy Research, Inflammatory Diseases, the Karolinska University Hospital, Stockholm, Sweden, and colleagues write. 

The authors report a pooled observed case analysis of 3595 patients with moderate to severe RA from a global clinical trial program. Patients had received a mean of four courses of rituximab (RTX). The placebo population included 818 patients (1107 patient-years.......Continue reading here. (Requires creating a free account.)

While this case analysis examined the safety of rituximab use in the treatment of rheumatoid arthritis, and not primary Sjogren's syndrome; still I find this to be good news for ongoing research in B-cell depletion therapy use for autoimmune diseases.

It Has Indeed Broken

(Before continuing to read, scroll to the bottom of this post to the video and press play. Ready? All righty, then.)

I am having a really hard time getting a good night's sleep lately.

I'll be willing to bet that I'm not alone in my battle with sleeplessness.

My inability to get at least six hours of solid sleep leaves me feeling a little wobbly all day and with the disconcerting sensation of teetering on the edge of an energy abyss. Last night was one of those nights.

I know that my insomnia is due to the fact that I am having a hard time managing my peripheral neuropathy and restless leg syndrome right now. I'm taking gabapentin (Neurontin) which up until about six weeks ago was barely - just barely - keeping the shooting pains and vibration sensations in my legs and feet under wraps. My prescription of pramipexole (Mirapex) for RLS leaves me mildly nauseous about an hour after I take it, and since my symptoms of RLS are increasing, I'm left to wonder which would be worse: increasing my dose to relieve the RLS causing an increase in that nasty barfy feeling OR doing nothing and grapple with that nightly uncontrollable urge to move my legs and get up to walk walk walk on my painful knee.

Wah. Wah wah wah wah.

I've got an appointment soon with my doctor for a strategy session. There's simply got to be a better way to manage this. Ah, but in the meantime, I've seen many sunrises.

I have a love/hate relationship with sunrises these days. I dislike having been awake from sunset to sunrise in a sleepy loop of irritation. But then there's mornings like this, when I see the horizon lighten and wonder yet again why my symptoms seem to fade as the sun begins to shine. I love that.

The pain gets better right about........now. So strange. 

This morning I grumped myself over to the coffee pot and poured myself a cuppa, and noticed that the sky was clear, so I slid open the patio door and shuffled out to the deck and my canvas swing.

Ahhh.

I sipped coffee and waited for........

THIS. Yessssss.

Lulu loves a good sunrise too.

These glorious golden mornings bring out my inner hippie. Peace, man. 

Sjogren's Education in Korea

Last week, I received this email from a physician professor at Ewa Womans University in Seoul:

심성신
Sep 3 (4 days ago)

to me 
Dear Julia Oleinik,

I am a doctor of radiology dept in Ewha Womans University, Korea.
I have seen a tracking sheet in your blog and impressed by such a good tool.
In next Friday, the Korean conference for radiologists will be held and there will be a lecture for "thoracic manifestation of systemic disease". 
I am asking you that I can use this sheet in my presentation slide for explanation about systeic symptomes of Sjogren SD.
Please let me know.

Thank you.

Sincerely,

Sung Shine Shim 

Sung Shine Shim, MD
Associate professor
Department of Diagnostic Radiology
Mokdong Hospital,
Ewha Womans University
Mok 6-dong, Yangcheon-gu
Seoul, Korea

Of course I couldn't take credit for the symptom tracking sheet:

Hello, 

The tool is a product of the Sjogrens Syndrome Foundation. The Foundation has given permission for its use to any clinicians or patients. So I think it would be perfectly appropriate for you to use it. 

Thank you for educating others about Sjogrens Syndrome! 

Best regards, 

Julia Oleinik 

You can find a printable PDF file of this Sjogren's Syndrome Foundation worksheet here. 

Yay for Gallavanting

Yesterday, the John/Julia/Greg/Terese gang went galavanting yet again. We just can't stand to stay in one spot for long. It was a cool drizzly day; but we weren't about to complain since the wet weather will go a long way toward bringing the numerous wildfires in our area under control.