Focus

Next month, John and I are going to do another of our delightful just-get-into-the-car-and-drive-for-mind-and-butt-numbing-distance trips. 

I love these vacations. Just love 'em. 

Although we do have a mid-trip destination point, what we see and do going to and from there is entirely up to us and our whims. Lulu won't be joining us. She is going to visit her friend Skippy across the street, so she'll be happy and well cared for. We'll throw some junk into the car, charge my camera batteries, put some bottles of water into a cooler, and off we'll go. It goes without saying that a 2014 road atlas, a Garmin, and Google maps loaded on our phones will go with us as well. 

How DID people travel without smart phones back in the day? We do have a tentative route planned that includes a stopping point in Glacier National Park (Yessssssss!) with some hotel reservations made; but as is our history on these types of outings, more often than not we change our mind about just about everything. A few calls later, our reservations cancelled, new ones booked, and bam. On our way. If I have a low energy day, we can modify our plans. If I have a really good day, we can accommodate that too. 

Which brings me to one of my favorite parts of a vacation: planning and shopping. 

Yes. I'll let John handle the heavy lifting on the planning duties, but then I get to shop for items that would be required for our destination. For example. I'm finding it harder and harder to keep my grip steady when taking pictures. My shaking could be due to prednisone, caffeine, or my albuterol inhaler, but for whatever reason even with the image stabilization feature turned on, lots of my pictures just aren't in focus. And now that I've had my cataracts fixed, I can TELL that they're not focused. 

Woo hoo.

Since we plan on stopping by Glacier National Park, the photo ops will be unbelievable, and I want to grab as many great pictures as I can. So with the hopes of minimizing my tremor-induced crummy pics, I decided to investigate using a monopod for my camera kind of like this one:

We have a tripod, but it's bulky and time consuming to set up. I know that even though it would be sitting in the car, I'd not use it just because it would be cumbersome. And then the grizzly bear would be long gone by the time I'd have it set up. "Oh, come back Mr. Bear! Julia wants your picture, pretty please?!" Mmm Hmmm. 

Some photography sites have recommended buying a monopod that can be used as a walking stick and folds up small enough to fit in a backpack. I'm thinking buying one of those may be a good idea. 

I've also read that they're great for taking selfies. Like this one, found here. 

Maybe JOHN can take a selfie, but I avoid putting myself into any camera frame regardless of who is taking pics, so I'm thinking I'll pass on this particular model. 

Anyone have some photo taking tips for shutterbugs with the shakes? 

Dunk

Y'all will have to indulge me for a bit here as I cheer on the Portland Trail Blazers basketball team after winning three out of four games in the NBA playoffs.

Yeah, Rip City!

While we Portlandians are rabid Blazer fans, we still are residents of Portland. Meaning that we have to put our own unique perspective on things including pro basketball. This clip from the television show Portlandia captures us hilariously well, I think.

I'm a local. I'm entitled to poke fun at my city.

Medscape: The Neurology of Sjogren's Syndrome and the Rheumatology of Peripheral Neuropathy and Myelitis

I thought this article from Medscape Nurses was extremely interesting. It's entitled The Neurology of Sjögren's Syndrome and the Rheumatology of Peripheral Neuropathy and Myelitis written by Aaron L Berkowitz and Martin A Samuels. It can be found on Medscape, here. (For those of you who are unable to view the article, it will be available after completion of the free registration and login for Medscape.)

The article was originally published in Practical Neurology 2014;14(1):14-22. . Here's the abstract:

Neurological symptoms occur in approximately 20% of patients with Sjögren's syndrome, and may be the presenting manifestations of the disease. Here, we review several neurological conditions that can occur in Sjögren's syndrome: sensory ganglionopathy, painful small fibre neuropathy, and transverse myelitis (independently or as part of neuromyelitis optica). We present the symptoms, signs, differential diagnoses, recommended diagnostic evaluation, and treatment of each of these, highlighting the features that should alert neurologists to consider Sjögren's syndrome.

What I found remarkable about this article is twofold: first, it goes into great detail about how neurologists evaluate a patient for various types of neuropathies. But secondly, the intent of the article is to encourage physicians to consider Sjogren's syndrome in the differential diagnosis of patients presenting with neurological problems:

Sjögren's syndrome can affect any component of the peripheral or central nervous system. We recommend evaluating for Sjögren's syndrome in all patients presenting with sensory ganglionopathy, small fibre neuropathy, or other neuropathies with unrevealing initial evaluation, as well as in patients with longitudinally extensive transverse myelitis and/or demyelinating-appearing brain lesions in patterns atypical for multiple sclerosis. All patients with these neurological disorders should be screened for sicca symptoms and other symptoms and signs of rheumatologic disease (eg, arthralgias, rash, Raynaud's phenomenon). Initial laboratory testing should include antinuclear antibodies, anti-SSA, and anti-SSB, but these may be insensitive, and one should proceed to lip minor salivary gland biopsy if serology is non-diagnostic. Patients with known Sjögren's syndrome who develop CNS disease should undergo testing for NMO-IgG. Patients with neurological manifestations of Sjögren's syndrome are ideally evaluated and cared for through collaborations between rheumatologists and neurologists to provide definitive diagnosis, as well as to optimise disease-specific and symptomatic treatment.

Bring on the Flowers

The local farmer's market is open for the season! I couldn't resist buying this gorgeous bouquet of spring flowers.

Just Because This is Cool

Check out this image of the path of impulses through a mouse retina:

Image found on Brainfacts.org, here. 

"Our sense of vision depends on electrical signals travelling from the eye to higher centers in the brain. The image of a mouse retina above shows the path these signals must take." Continue reading here.

Just Another Adventure With Bev

Yep. Looked just like this one. You can buy your very own here. 

As always, when I discuss an outing that occurred with my friend Bev, I feel the need to preface the accounting of events with this disclaimer:

I swear. This is the truth. I'm not making it up or exaggerating. Honest. 

Yesterday, my phone rang and it was the Bevster. "I know you don't have a thing to do today. I'm kidnapping you. Let's go to the casino! We could even spend the night if we win big!"

Um. OK. But....um....Bev.....I don't think staying overnight would be a good idea. I'd probably get pretty tired.

(Actually, what sparse amount of gambling money that I would be taking with me would evaporate long before it would be time to head home.)

Within the hour, Bev and I were speeding south on I-5. I told her that I would drive because the seats in my car have an adjustable lumbar support for my back, but mostly thinking that I could forcibly pry her out of the casino and drive her home if the need arose. Bev loves the casino.

So we're gabbing away like crazy, sipping on our mochas, and Bev is rummaging around in one of the three purses that she brought along.

Yes. Three.

One is a large tote bag, another is her regular purse, and the third is her gambling purse. She had her head buried in the large tote bag while she was transferring stuff from her regular purse to her smaller gambling purse. I heard a curious sound like a short hiss.

Suddenly, her head shot straight back and she began to gasp.

"What. The. Hell?!" She quickly rolled down the car window and began to gag as an unbelievably horrible smell permeated the car. "Oh, crap. The bear repellent went off!"

Yes. My good friend Bev detonated a spray bear repellent IN MY CAR AS I WAS DRIVING 70 MILES PER HOUR.

First off, until that moment I had no idea what a bear spray thingie was. Or even that such a product exists. Secondly, I also had not the slightest clue why Bev would own one, much less carry it around in her purse so that she could accidentally set it off as her foot kicked her bag.

BEV! I'm going to pull over!!

At this point she had quit gagging and coughing long enough to make certain that the liquid part of the spray was contained in her tote bag. Which it was, thank God. "Oh, no. Don't stop. We're almost to the casino. We'd just be wasting valuable time."

Bev. Are you sure you're all right? It's pretty stinky in here. I rolled all four windows down.

She stuck her head back into the tote bag and repeated the gagging and coughing. "No, [cough]
 really I'm fine. [gag]." She found a ziplock bag and began to triage the bear-bombed articles from the non-bear-bombed things. There were very few things that were NOT bear-bombed. "CRAP!"

What?! What?!

"I rubbed my eyes." She was alternately gagging and choking with the new addition of reddened eyes streaming tears.

We pulled into the casino parking lot and found a parking space directly next to a garbage can. Oh, look, Bev. You can throw all the stuff away in here.

She held up the still dripping can and regarded it thoughtfully. While gagging and coughing and tearing. "Rick will KILL me if he finds out. Maybe we should just wipe it off and keep it. These things cost fifty bucks!"

Girl. I love you like a sister but you are not getting back into my car with that thing.

She sighed. "You're right. We'll just have to tell Rick that we had to fight off a bear. In your car. On the way to the casino."

We looked at each other and began to hoot with laughter. I'm sure the folks around us thought we had gone slightly batty.

I'm guessing that she had this um...unusual...product because she and her husband travel to Alaska frequently and venture out of the cities into the wilderness. But I'm not going to ask her because I'm afraid she'll show me another can and detonate that one too.

I was telling John the story after Bev and I arrived safely back home, she having won a considerable amount of money at the blackjack table (none of the poker dealers seemed to mind the fact that her cash smelled pretty awful) and me with the expected empty purse. Incredibly, my car was not bear stinky. I can not imagine how we escaped having to have the interior of my car cleaned right down to the chassis.

He sighed. "I wish I could tell you I am surprised, hon...."

Ah. He knows our Bev.

I Have a Ruptured Donut

Guys. Ready for another round of Julia wah-wah-wah? No? See ya'll tomorrow, then. 

Otherwise.....read on......

I have been in denial for the past six to eight months about this nagging back pain that turns into a numb right leg and foot after I walk it around. In defense of my denial, this showed up during a period when I was feeling crummy overall and wasn't doing a lot of walking around anyway. Then after my rituximab infusion and it's accompanying higher doses of prednisone, it all went away. Ahhhhhh. 

I forgot about it briefly until the pain and numbness returned as I tapered my prednisone dose. Rats. So during my last visit to Dr. Young Guy, I 'fessed up, and he ordered an x-ray of my back and made a referral to a physiatrist for me. 

What's a physiatrist? I asked suspiciously, thinking that the name sounded psychiatrist-y. 

"It's a physician that's received special training that combines orthopedics and neurology. They do lots of rehab work." Oh. Spiffy!

I received an appointment quickly, and last week met my very own physiatrist physician, who turned out to be even younger looking than Dr. Young Guy and equally nice. He listened carefully to my litany of symptoms, made a physical exam of my back and hips, then put me through a series of bizarre exercises to determine the type and extent of my issues. He made the mistake of asking the perfectly logical question, "How far can you walk before the numbness in your leg and foot begin?"

But since I was totally tired out from all that bending and stretching and walking tippy-toe, at that point the dreaded TIRED = STUPID factor came strongly into play. Um....I don't know. It doesn't seem like very far. I'm a really rotten distance estimator. 

He was a very patient young man. "Just try to describe the distance the best way that you can."

Well. You know when you go into one of those huge grocery stores? And you go in the door closest to the bakery? And then you go through the produce department and past the meat and dairy and end up by the frozen pies? 

He just looked at me. I couldn't read his expression.

You know. The pies in the frozen foods section. So it would be the distance from the parking lot, through the bakery and all the way to the frozen foods. I can't even do one whole lap around the grocery story periphery.

"O-kaaaaaaay," he said. 

We were silent for a brief period. I think he didn't quite know what to make of the information that I just given him. I was glad that he didn't do a facepalm or start to laugh. What a guy.

Then he gave me his opinion: "I think what you've got going here is a ruptured disk between two of the vertebrae of your back. It's most likely between the last of the lumbar vertebrae and the first of the sacral ones." He grabbed a plastic and rubber model of the spinal column complete with spinal cord, nerves, and a conveniently herniated disk. He bent the model spine as if it were a person hunching forward, and whoa! That little blue herniated disk bulged prominently to squeeze the nerve directly behind it. It was pretty gross, actually.  It looked kind of like this illustration from the Mayo Clinic, found here.

Here's how Mayo defines my back problem:

A herniated disk refers to a problem with one of the rubbery cushions (disks) between the individual bones (vertebrae) that stack up to make your spine. 

A spinal disk is a little like a jelly donut, with a softer center encased within a tougher exterior. Sometimes called a slipped disk or a ruptured disk, a herniated disk occurs when some of the softer "jelly" pushes out through a crack in the tougher exterior. 

A herniated disk can irritate nearby nerves and result in pain, numbness or weakness in an arm or leg. Continue reading here. 

A jelly donut. I have a ruptured jelly donut. Hm.

I'm so pathetic. This knowledge made me want to immediately drive myself over to Krispy Kreme. But I didn't. Yay me! I would have patted myself on the back but that would have hurt.

He gave me some specific exercises to do, several postures to strictly avoid, talked about the use of heat and or ice, and made a return appointment for me. "Most people can heal these disk problems without surgery or injections. I'm hoping that you can too. But we'll keep a close eye on things to make sure," he said as he handed me a stack of papers that thankfully had all of the information written on them that we had just been discussing since I was still firmly in stupid-land at that point.

Good grief. Wouldn't you know this dumb stupid back thing had to show up just as my rituximab energy is beginning to kick in?

Does anyone have a ruptured jelly donut story with a happy ending to share? As in: their disk healed itself up just fine and dandy without surgery or injections?

Anyone?

I could really use one of those right now.

AARDA: Autoimmunity Education Curriculum

Kudos to the AARDA (American Autoimmune Related Diseases Association) for creating this autoimmune curriculum for kids and teachers. Read this, found here:

Innovative New Autoimmunity Curriculum for Elementary and Middle School Teachers

Newswise — DETROIT, April 21, 2014 – Furthering its mission of educating all Americans about autoimmunity and autoimmune disease (AD), the American Autoimmune Related Diseases Association, Inc. (AARDA) has launched the first-of-its kind autoimmune curriculum for teachers of grades three through eight.
Working with life sciences curriculum experts from the Education Center, LLC, AARDA has developed and is making available free to elementary and middle school teachers across the United States grade-appropriate curriculum materials that align with the Common Core Standards.
“If we want all Americans to truly understand what autoimmunity is and how the autoimmune response in individuals can cause any one or more of the more than 100 known autoimmune diseases, what better way than to begin educating them at the earliest possible age,” said Virginia T. Ladd, President of AARDA. [bolding mine]

YES. Ms. Ladd is really onto something here. Accurate information presented early is the best awareness raising tool possible. Here's the video:

Information packets for grades 3 - 8 and video can be found here.

Snoozefest

Ahhh. I love holidays, but after all that celebration I am one pooped puppy. Today, I am taking time to recover. So is Lulu. See y'all tomorrow.

It Was Grand

It's funny, isn't it? Somehow a holiday is wonderful no matter where it's celebrated as long as those we love are with us. Yesterday, I learned a valuable lesson: my kids and their spouses can and did throw a fabulous holiday bash. I'm one lucky mom. 

Easter was spent attending a glorious Mass, eating delicious food, but most importantly: spending time together as a family. 

Happy Day

Gorgeous Ukrainian Easter egg found here. 

Have a wonderful day, everyone. See y'all tomorrow. 

An E for Effort

Yummy chocolate See's bunny found here. Wonder why the ears really do taste best?

So. Today is Saturday, just one day before Easter Sunday. Which means that Lent is, for all practical purposes, over. When I was a kid, it was the day that my siblings and I would pester my Mom to allow us to dive into the stash of candy that we had saved over the previous forty days since giving up candy was about as creative as a childhood me ever got regarding a Lenten practice.

Mom refused, every time. She insisted that, "If you kids could wait for all of Lent then you can wait until Easter morning. You can put your saved up candy into your Easter basket to add to whatever the Bunny brought you."

She didn't negotiate.

My self-imposed task for this Lent was to try to be a kinder individual, which is hardly a tangible thing. Kindness isn't something that one can collect in a plastic bag in one's bedroom closet for forty days and then dump into your Sunday morning Easter basket. It's hard to measure my success in being a more kind individual ever since Ash Wednesday.

But I have tried, really I have. I think that if someone were paying attention there would be very little observable changes in my behavior, still I have been trying. I think the proof of my limited successes is evident not in what I did or said; but rather what I didn't do. Or say.

(Oh, would you just quit laughing, Terese! I'm trying to be serious here.)

Yeah. I've tried hard to bite my tongue and censor my thoughts, which is a tall order for Ms. Blabbermouth me. And I can't say that I've been completely able to do that, but I made a serious effort. I tried really hard.

And that, I think, is what Lent is really all about.

Now bring on the chocolate bunnies!

This Makes Me Happy

Having one of "those" days? Watch this. I double dog dare ya not to smile.

What a Moon

Did you see the lunar eclipse a few days ago?

I did. In spite of myself. And it was pretty awesome.

The sky was partly cloudy that evening as we waited for the moon to rise, so John and I decided that we probably wouldn't be able to see the eclipse after looking at the bank of grey clouds heading our way. As we prepared for bed, I went around the house lowering the window shades and glanced out to the eastern sky.

Whoa. When did all the clouds roll away? I thought. It was a crystal clear night out there! And the moon was a gorgeous perfect pale white circle. I couldn't possibly go to sleep knowing that the eclipse was going to take place right over our heads. John told me that he was going to be able to sleep through it all perfectly well, thank you very much. So I smooched him good-night and began to think about the best place to view it all.

Turns out that the southeast window up in the Bearded Dog Pub -- AKA as my son's old bedroom repurposed into a billiards/darts/foosball room -- was perfect. I thought that I'd just plunk my hinder down onto one of the pub chairs to simply watch and wait. Just relax and take all this celestial beauty in, I told myself. But then I had the thought that this was a prime opportunity to take pictures...

See? Pointing squarely at the moon. Perfect for eclipse-watching. If it's night time, that is....

What followed was about three trips up and down the stairs collecting the camera, and tripod, and additional lenses, and...whew. I took a breather on one of the pub stools and was glad that I had another whole hour before the thing actually started. While I was sitting on the stool, it occurred to me that the recliner across the room would be far more comfortable, since I anticipated sitting for quite awhile while I watched, so I dragged the thing over to the window after pulling the pub table and chairs out of the way. I sank down into the cushions and decided that this was indeed a perfect chair in which to spend a few hours stargazing.

But......dang. That darned window screen would really mess up the pictures, I thought. I briefly thought about waking up John to ask him to muscle the thing out of there but thought that surely I could figure it out. After what seemed like forever, I had loosened the connectors and had the screen off the window and inside the house. I was tired but quite pleased with myself as I sat back down yet again, certain that I could really relax and quietly watch the sky show.

After a few minutes, I remembered hearing that NASA had put something up online about live streaming the eclipse from one of California's observatories for people that couldn't see it in person. How cool would it be to watch it on my computer AND in person? I marveled.

I staggered back down and up the steps to retrieve my laptop. And then made another trip for the power cord. I brought up the NASA site which was indeed live streaming amazing moon pictures.

Whew. It's hard work relaxing in front of this window! I told Lulu, who was trotting along with me up and down the stairs. I mopped my sweaty face with the hem of my nightgown and decided that it was time to put the camera on the tripod and take a few practice pictures.

I put Canon into his manual mode and started to change the iso and f-stop settings. And because I had completely pooped myself out chasing all over the house for the past hour, had tripped the TIRED = STUPID switch. I couldn't for the life of me remember how to do any of those things, and my pictures definitely were not what I had hoped for.

Good grief. To my eye, the moon was crisp and clear. Didn't translate that way for my camera. 

Sigh. One more trip downstairs for the owner's manual for the camera. Gee. I think those chew marks on this book were made by our very first schnauzer, Bart. Awww. good old Bartie. I miss that doggie boy...

By this time even though I had all the information I could possibly need literally at the tips of my fingers, none of it made sense. I sat back in my recliner totally bathed in perspiration and quivery from head to toe, tossed the manual aside and finally took some time to actually look out the stinkin' window.

Wowsers. It was awesome. By this time the earth's shadow had moved about halfway across the face of the moon. I looked over to my computer and was awed by the fabulous images that were on NASA's website. I watched transfixed as the eclipse progressed. Just as the moon was completely eclipsed and I could just begin to see the orange-red hue begin, suddenly everything disappeared from the sky.

What the heck?! Ah. The bank of clouds had returned, I discovered. At the worst possible moment. I pulled my laptop closer and noticed with dismay that the images had disappeared from their website as well! Drat. "We're having problems with our feed," announced a woman online. A series of still images began to appear instead of live footage. But what stunning images they were:

Image found here. 

I reasoned that I was fortunate to have seen any of the eclipse at all, and so I waited to see if the clouds would part once again. No such luck. But at least the series of pictures from NASA continued to roll by, each more beautiful than the next.

A light breeze drifted through the screen-less window. I took a deep breath of the cool night air, looked up into the dark starless sky and suddenly felt.........very, very small in comparison to the cosmos.

Were you able to see the blood moon?

Lulu isn't sure what she thinks of this.......

Love Those Neutrophils

Guys. Good news!

Dr. Young Guy has ordered weekly CBCs with a white blood cell differential after my rituximab infusions, since my last cycle about a year ago caused my neutrophils to drop to dangerously low levels.

My neutros have been skimming along just with enough to be considered normal, until today. Today's numbers came back a happy and healthy 3.71 (normals 1.80-8.30 x10(9)/L).

Woo hoo!

I was out running a few errands when the email notifying me that my lab results were available. Thank goodness for my iPhone. I was able to log into my account at the clinic and see the CBC numbers right there in the grocery store. Yessss. I love technology.

I felt a happy rush of adrenaline; so I zipped through the check out lane, hopped into Goldie, and zoomed around town spending far too much moolah and -- more importantly -- all of my energy reserves; which left me pooped out on the couch for the remainder of the day. Yeah. Pooped out but with a big grin on my face. Let the mouse energy curve begin, people!

See y'all tomorrow.

Goober Meter

Although I love my Easter mug, it's especially hard to drink from it without leaving some of it's contents on ME. 

Yesterday, as I was slipping on my jacket before church, I noticed with some impatience that it was prominently sporting a healthy sized goober on my left lapel.

Oh, brother. Not again.

.:: clarification note: a Goober is defined as the result of depositing food or beverage onto articles of clothing during the effort to ingest said food or beverage product. Not to be confused with a Booger, which I'd rather not discuss at the moment.::.

My jacket is black and the goober -- I have no clue whatsoever what it contained -- was white and grainy. Of course. I grabbed a sheet of paper towel, dampened one corner, and began to scrub away the most obvious spots. Which was all of them because the goober was WHITE on a BLACK jacket, for cryin' out loud. While I was vigorously rubbing away, it occurred to me that this incident actually was a good thing. Not because I had dribbled something on a very visible place on my frequently worn coat, but rather that I noticed that I had goobered, and that I cared that I had goobered.

Hm. I actually CARED.

So.....it appears that..... my perceived level of irritation with clothing goobers seems to be inversely proportional to my fatigue levels. Well, now. I think I may have found myself yet another way to gauge my fatigue. WHY should I need tools to assess my fatigue? Because when I'm tired, I'm stupid. I need all the help that I can get. I'm thinking that this tired/stupid/goober measurement tool looks like this:

-- Low fatigue = Good grief! Why didn't someone TELL me that I had coffee dribbled down the front of my white t-shirt! Aaaacccckkkk! *frantically runs to closet to grab a new blouse*

-- Moderate fatigue = Oh, hey. There's something on my shirt. Again. *pulls sweatshirt over the top of goobered clothing*

-- Crash fatigue = Shirt? Am I wearing a shirt? Good. Coffee? Is there coffee made? Good. Sluuurrrrppppp. *dribble dribble dribble*

Yeah. I think I'm onto something here.

Not Better. Not Worse. Just Different.

Easter Sunday is one week from today. Ahh. I love this holiday. I enjoy it for so many reasons: the first being that it represents the most important event in my faith tradition, but also because it heralds springtime, brings with it chocolate bunnies, and...

.....the Ham-O-Rama.

Yes. The Ham-O-Rama. Mmmmm.

For the last decade or more, at our house, the Easter Sunday Mass is followed by a springtime feast of epic proportions. The cornerstone of this delightful meal is ham -- but not just any ham. Actually, we have two hams both expertly smoked by smoke master John and his awesome Traeger grill, and each of these hams wear a delectable glaze. Each glaze is different, and the lucky folks who taste each of them are required to vote which is tastiest. The winning glaze returns for the next year's Ham-O-Rama to take on a new glaze contender.

It's a delicious contest.

But there's more than ham to this gathering: we fill the house to bursting with family and friends. We laugh and talk and play games, one of which is an Easter egg hunt with varying rules. And after everyone returns home, John and I collapse on the couch and happily re-hash all the fabulous details of the day while we munch on chocolate bunny ears.

This year, things will be different. Not better, not worse -- just different. Because I have very reluctantly come to the conclusion that hosting the Ham-O-Rama this year is just not possible for me. When I scheduled my rituximab infusions, I knew that I would still be in the recovery phase at this point meaning that my energy levels would still be severely compromised. So rather than trying to muscle my way through the holiday propped up by the artificial energy from Provigil and caffeine and then crashing big time afterwards, I've asked my kids to host this year's event.

While this may seem like a very logical decision on the surface, in reality it's a big thing.

A VERY BIG THING for me.

I'm trying really hard not to label this holiday hand-off as a concession to autoimmune disease, but I can't say that I've been completely successful in this.

BICJ is throwing a tantrum of epic proportions right now. My Bratty Inner Child Julia is thrashing around and wailing, But I don't wanna give this up! It has to happen at MY house! I get to be in charge of EVERYTHING! I want to order everyone around and make the menu and buy the candy and dictate the order of the day's events! Wah! Wah wah wah!!

Not pretty. I'm glad that at this point the conniption fit is happening largely in my psyche. So far.

I'm so glad that I made this decision many months ago when Easter seemed to be very far off and I could attempt to think logically; to balance my expectations with the probable realities of my physical capabilities, because my assessment of the situation was spot-on. Even though everyone pitches in and helps, the preparation for a houseful of weekend guests and the planning, shopping, and cleaning would have completely erased what scant energy reserves I have.

My kids have very enthusiastically stepped forward to take the Easter celebration reins. We'll all gather at my son's home, attend Easter Sunday Mass, have a wonderful meal, but most importantly -- we'll be together. It will be great. So just can the hysterics, BICJ!.

Easter will not be better, nor worse -- just different. But still wonderful.

Seasons

Would you just look at that beautiful blue sky. Ahhhhh. 

We've had several beautiful sunny days strung together this week, and more forecast for the week ahead.

I love it. Lulu loves it too.

But my body isn't loving it. Happens every year: it seems that my body needs time to adjust to a change in seasons, especially when that means transitioning from cool and rainy to warm and sunny. My spirits lift as the clouds do, but unfortunately the rest of me goes down the tubes until I acclimate.

Even though I carefully apply skin block, wear my hat and long sleeved shirts, still my Lupus rash flares, my joints become more achey, and I feel an additional drag on my energy. It seems that in years past I need about two continuous weeks of this weather before I notice a decrease in my joint pain and I begin to feel settled into the new season.

C'mon body. Get over yourself so that I can truly enjoy this weather.

Friday Funny

Have you seen these Subaru ads? I love 'em. This is one of my faves:



Mean old cat.

Does that organic label matter?

So...is this an organic to-MAY-to? Or an organic to-MAH-to? 

I've mentioned before that I try to buy organic food items when I can. But sometimes I'm not certain how some of these products are determined to be organic vs conventional. Thanks to Sjogren's Forum for tweeting this link from Mayo Clinic about organic foods which helps clarify the issue:

Organic Foods: Are they safer? More nutritious? 

Once found only in health food stores, organic food is now a regular feature at most supermarkets. And that's created a bit of a dilemma in the produce aisle. On one hand, you have a conventionally grown apple. On the other, you have one that's organic. Both apples are firm, shiny and red. Both provide vitamins and fiber, and both are free of fat, sodium and cholesterol. Which should you choose? Continue reading here. 

What do you think? Are organic foods worth the increased price?

Checking In

I had an appointment with my rheumatologist Dr. Young Guy yesterday. Funny how regardless of how I feel when I walk into that appointment, without fail I leave feeling better. Encouraged. Like we have a plan of action. I of course feel exactly the same symptom-wise, but the fact that I have someone on my side in this fight against Sjogren's is pretty powerful medicine.

We had quite a bit to talk about during this visit, the most important item being the fact that I seem to be tolerating the rituximab infusions quite well. My neutrophil counts continue to remain in the normal range, and I'm just beginning to feel a boost in my energy.

Dr Y.G asked me how I would describe that feeling. I can't put it into words, I said. The best way to explain it is that somehow the balance of fatigue/energy just seemed to.....shift. A little for the better. Something has changed, but I can't express this well.

On the less positive side of things, we also discussed my recent subacute cutaneous lupus flare-up. Sigh. I hate looking so spotty.

**WARNING** The following pictures are ewwwwww-provoking. Feel free to scroll right past them. I have been wanting to get back into the community swimming pool, but think I will wait until this rash settles down a bit. Would YOU want to be swimming alongside someone who looked like this?

I didn't think so. I wouldn't want to, either.

We're hoping that as the rituximab effects kick in more strongly that my rash will respond by fading, plus I have a brand spankin' new tube of triamcinolone cream. I'm to apply it twice a day. John has to slather the stuff on my back which is where that big nasty thing is on the first picture. I tried wrapping a wooden spoon with paper toweling to try to apply it myself.......didn't work so well. Having my hubs around sure comes in handy now and then. Grin.

We ended the appointment by discussing Reasonably Well, about which Dr. YG commented, "Keep it up! You're doing a good job!"

I consider that high praise which was much appreciated.

Then he asked, "What are you going to call me in your blog when I'm not YOUNG any more?"

I had to think about that. I decided that since he will always be many many years younger than I am, he will always qualify as being a youngster. So there you have it, I told him. You will always be Dr. Young Guy.

You'll be Dr. Young Guy always, you young whippersnapper. Deal with it -- but don't change one bit. I like you just the way you are.

Life is Good

Guys.

The sun is shining, it's baseball season once again, my white blood counts are staying within normal limits and otherwise behaving themselves, and my pear trees are blossoming.

If things were any better I couldn't stand myself.

See y'all tomorrow.

Toni Bernhard: How Chronic Pain and Illness Fan the Flames of Uncertainty

Thanks to Sarah for sending me the link to Toni Bernhard's Psychology Today blogpost entitled How Chronic Pain and Illness Fan the Flames of Uncertainty. Ms. Bernhard really hits the nail on the head in her assessment of the relationship between chronic illness and feeling unsettled. Here's a snippet:

No one is immune from life’s uncertainty. But for the chronically ill—which includes those who suffer from chronic pain—it can feel as if the number of life factors subject to uncertainty has multiplied geometrically. Indeed, perhaps the hardest thing about being chronically ill is the uncertainty it brings to almost every aspect of life. 

Here are six ways in which uncertainty is a particular source of stress for the chronically ill.....continue reading here. 

Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up. I am looking forward to reading my copy of her latest, How to Wake Up. Love that Amazon "buy now" button.

I was impressed with Bernhard's choice of the word uncertainty; since if I were writing this piece I would probably not have had the wisdom to use such a neutral word. A word that doesn't immediately link to a strongly negative emotion.

When I think about the six scenarios that she presents, and number five is a good example: Uncertainty over how we’ll react to a routine medical procedure, I probably would have expressed this concept using phrases that include the word panic. Or even more accurately, Oh-My-Gosh-I'm-Sure-I'm-Going-To-Die, resulting in the classic Let's-All-Have-Ice Cream-In-Case-This-Is-My-Demise response. Preferably one that includes a Butterfinger Blizzard.

::Deep breaths, Julia. Just breathe deeply......in.......out.......ahhh. Got BICJ locked back up in her closet? We do? Good.::

I sincerely appreciate any help in guiding me toward a better acceptance of the realities of chronic illness and Bernhard offers some very spot on advice, especially this: "What I’m recommending here is that we work on making peace with life’s uncertainty since it’s an inevitable part of the human experience."

Make peace. Not Butterfinger Blizzards. I like it.

I heard her say it. Yes I did.

I could have been indulging in amazing Rose's Deli pastries like this. Every week. 

Well. I NEVER.

Ever since Ash Wednesday I have been laboring under a false assumption.

It all started on the first Friday evening in lent. John and I and Greg and Terese have made it our mission to find the best Friday night fish dinner in the greater metropolitan area; since we abstain from meat on Fridays during the forty days before Easter Sunday. It's a tough job. But we have undertaken this quest for the last three or four years with great dedication and persistence.

So on that fateful Friday evening after tucking away a delicious beer battered fish dinner, I swear I heard Terese declare that she was giving up desserts for Lent.

Honest. Cross my heart.

My, I thought. That's really something. Wish I had Terese's willpower and dedication to the spirit of Lent!

So every Friday night after our weekly dinners, and the waitress offers us a variety of delectable desserts, I announce to everyone at the table and the waitress that since Terese has given up sweets for Lent, that we would ALL refrain. Even though I really would have loved to indulge.....dang. But being the really good friend that I was and all, I would support her. Meaning that we all should.

Until last Friday night when after I made my usual no-dessert-proclamation, Terese asked me, "Where on earth did you get that idea? I NEVER said that I was giving up dessert! I want some Moose Tracks ice cream!" Because we were eating in a Moose themed restaurant. Don't ask.

WHAT? You said you were giving up desserts! Yes, you did!! I sputtered. John! Greg! You heard her say it, didn't you?

They looked at each other and shrugged their shoulders. "We heard YOU say that she said it." commented John.

I'm indignant. I mean, none of us need all those extra calories and sugar and wheat but.....it's just the idea of the thing.

I've lost three pounds since Lent started. And it's all YOUR fault, Missy Terese. Tsk.

Sprouting

Now this is my favorite plant in our yard. I think it's called "Hen and Chicks". I planted it. I ignored it. I have never watered it. It grows like a weed. Perfect. 

My post Planning Fun brought these comments/questions:

This from Kelly: Wait, wait, could we have more technical info on this fern growing enterprise? All I can find online about growing new fern plants is information about dividing mature plants or propagating from spores, which takes a long time. You are starting with what look like seedlings. How did you manage that?

Ok, Kelly. I'm going to let you in on a super duper secret.

::shifty eyes::

The truth is that I have absolutely no idea what I'm doing here.

I bought bags of perennial Christmas fern roots at WalMart.  The scientific name of this hardy beauty is Polystichum acrostichoides. I chose this species because they were cheap at about two dollars a plant, I liked the picture of the thing on the bag, and the information said that they were hardy plants. I have very highly detailed criteria for choosing MY flora. Snort.

When I opened up the plastic bag, I saw that it contained three globs of hard brown plant matter with trailing roots. A closer inspection showed that each glob was sending out a cute little green fiddlehead sprout. Naomi and I just planted each .... thing .... (they really did not look like a bulb to me but the packages were found in the tulip/bulb display in the store) in potting soil at the depth they suggested on the bag with the root thingies pointing down and the new sprout on the top. We'll see how they turn out.

 And this one from Jody: Any suggestions for easy to grow veggies or flowering plants? I'm hopelessly non-green thumbed.

Well, Jody, having divulged the fact that I'm kind of a clueless horticulturist, you may choose to follow my advice....or not. But here goes. (Now I know that oodles of Reasonably Well's readers are not only green-thumbed but heck. I suspect that they could be green-BODIED. In other words, are far better equipped with gardening skills than I am. So feel free to chime in here, people.)

If you visit a plant nursery/garden center and look out at a sea of green plants, the idea of choosing just a few varieties can be pretty intimidating. I have done some container gardening in the past and I think the best advice that I could give you is to buy plants that are specifically labeled as container plants. I've had some good luck with container cherry tomatoes, and a bush variety of cucumber. My daughter #2 has grown some herbs in containers with success.

Above all, don't be like me and blithely disregard the instructions regarding sun or shade and watering. I've learned that the people that write those instructions know what they're doing the hard way -- resulting in yellow spindly non-fruit bearing plants -- which is why in the fern incident described above I actually read and followed the instructions.

So there you have it. What's your success stories with gardening? Hey, Terese. Want to share the time you decided to grow your own cigars?

Friday Funny

I'm a Simon's Cat fan, and this latest entitled "Crazy Time" doesn't disappoint. Enjoy.

Planning Fun

Awhile back, someone asked me,"What do you DO all day when you can't work? Doesn't that get depressing?"

Um. Yes. Yes, if I let it, just vegging out for a large part of my day when I'm not feeling well does got old. And boring as heck, I told her. So I have to consciously plan fun.

"Plan..... fun?"

Well, to put events into my schedule that I will look forward to participating in. Anticipating happy times really helps me feel less cranky about stuff.

I thought about that conversation yesterday as my friend Naomi and I were discussing our plans for a wedding shower. Because I'm having way too much fun planning this shindig. I'm lucky that Naomi loves this type of stuff too. We can spend hours putting our heads together making sketches of decorations, designing invitations, and making lists.

This kind of stuff would have driven me absolutely bonkers about fifteen years ago. Back then, I was too busy running around with my hair on fire balancing work and all the other activities that I enjoyed. I simply would not have had time to be concerned with detailed planning. But as my disease appeared, and work and so many of my hobbies began to disappear, I began to look for ways to occupy those long hours that replaced my job and choir practices and all....

I discovered that I like planning things. Specifically things that involve gathering lots of people together, serving great food, and listening to interesting conversations. So. I'm having a grand old time planning Terese's daughter's wedding shower.

It's not going to take place until July, so Naomi and I will have lots of time to fuss and discuss every little detail. One of the things that we've decided (and I am not going to divulge too many details here because I want Emily and Terese to be surprised at the finished effect of a Fiesta) is that we'd love to have lots of real flowers and potted ferns scattered around the venue; but since we want to stay within a certain budget, we opted to start some of these plants in my little greenhouse ourselves. Same amount of investment: quadruple the number of plants. Woo hoo!

My magnolia tree is really happy this year. 

We started yesterday by getting the ferns started. I chose the "Christmas" variety. With any luck, these babies will eventually look like this, found here:

After the shower, since they're perennials we can plant them in our landscaping. Win.

They have a way to go. This is what they looked like yesterday.

See those little baby fronds peeking up through the potting soil? C'mon little ferns. You can grow big and green and bushy. I just know it.

Disability Discussion

Reader Erica is asking Reasonably Well's readers to share their experiences with applying for SSD (social security disability). She's had a difficult time with this as many of you have. Here's her questions:

There is so much waiting involved with not only this disease.. waiting for meds to work, waiting for pain to subside, waiting to feel better, waiting for the doctor…. And then of course the process of filing for SSD… complete a ton of paperwork and wait for a decision, get denied and wait for months for a hearing to appeal… and now wait for the judge’s decision. I am losing my patience to be honest.
I was suggesting a question to your readers about their experience with SSD… the time it took, their process, attorney? No attorney?  I am also wondering, God willing, if I am approved, what is my date of disability? The date I originally applied for SSD? The last day I was able to work? The last day of my short term disability? … So many questions huh?  I have had a lot of time to ponder lol
Erica

The patient education sheet from the Sjogren's Syndrome Foundation regarding SSD is very helpful so I have reprinted it here:

Patient Education Sheet 

Tips on Obtaining Disability Benefits from the Social Security Administration (SSA) 

The SSF thanks Linda Dorfner Charles, BSN, RN, for authoring this Patient Education Sheet. Charles assisted the Sjögren’s Syndrome Foundation (SSF) in its long-time and successful advocacy for a specific federal disability listing for Sjögren’s syndrome. 

Tips on Obtaining Disability Benefits from the Social Security Administration.
• Know that documentation is key to winning your case! Keep a journal of your symptoms and cop- ies of all records from lab tests, doctors’ visits and hospitalizations.
• Review your medical records to ensure legibility and completeness.
• Submit documentation in order of occurrence. Show disease progression and resulting limitations,
including side effects of all current medications.
• Have your doctor highlight the fact that Sjögren’s symptoms can unpredictably wax and wane, as SSA forms are not tailored to these features.
• If applicable, state that during a flare-up, you are unable to perform specific activities. Include basic self-care or activities of daily living (ADLs) such as eating, walking, bathing, lifting, shopping, cook- ing, reading, driving, working and household chores.
• Document what it takes for you to get through every hour of a 24-hour day. Include what you must do to alleviate symptoms, e.g. every time you use eye drops. State how each symptom affects you (frequency and duration), e.g. how often you are fatigued and what it prevents you from doing. Don’t worry about sounding repetitive.
• Cite the impact of your combined symptoms on your function and productivity, including lost work days, job status, depression, and loss of relationships and social interactions. While one symptom alone might not be considered disabling, the combination of symptoms can be disabling.
• Describe the overall impact of Sjögren’s on you and your family’s lives. Don’t forget loss of income and high treatment costs (drugs, OTC products, medical co-pays, frequent doctor visits, psycho- therapy and physical therapy).
• Explain the negative impact of the workplace on your physical well-being. For example, dry air, fluorescent lighting and computers aggravate dry eye and travel and sleep deprivation worsen fatigue, joint pain, digestive symptoms and the ability to concentrate.
• Use educational materials to help your case. Visit the SSF Web site or contact the SSF for helpful materials.
• Read SSA disability guidelines for Sjögren’s syndrome. The fact that the SSA now includes specific guidelines for Sjögren’s will help your claim. Go to www.ssa.gov and enter “Immune System” in the Search feature to bring up the Immune System Disorders Guidelines.
• Don’t let rejection discourage you! Applicants often are rejected for benefits the first time they apply.
• Consider hiring an attorney who specializes in Social Security Disability to help with documenta-
tion and to expedite your approval for disability.
For more information on Sjögren’s syndrome, visit the SSF Web site at www.sjogrens.org, call 800-475-6473,
email ssf@sjogrens.org or write to the Sjögren’s Syndrome Foundation, 6707 Democracy Blvd, Suite 325, Bethesda, MD 20817.
Clinicians: Please make multiple copies of this Patient Education Sheet and distribute to your patients. If you have an idea for a topic or want to author a Patient Education Sheet, contact us at sq@sjogrens.org.

I was very fortunate in that I was approved on my first application for SSD. I think that the fact that I attached multiple sheets of paper including extensive details about my problems helped a great deal.

So what do y'all think? What was your experience if you have applied for disability through the Social Security Administration?

Doggie Park Day

The rain stopped long enough over the last few days that I figured Lulu's favorite doggie park wouldn't be uber-muddy; so yesterday Lulu and I headed over. She thoroughly enjoyed herself, and I did as well by walking leisurely around the park.

She is such a chicken when larger dogs come over to say hi.

Ahh. Can't wait until summer arrives.

Lulu is resting up for her next adventure. So am I. What should we do tomorrow, my furry woogie?