Sjogren's Syndrome and Dreams. Again.

I wrote this post ages ago, (11/13/10), but it mysteriously vanished from my Blogger archives, and was unable to find anything but a previous draft. And why I can resurrect THAT is also mysterious.....anyway, here it is, again. Thanks to alert reader Connie, who let me know that it was gone. 

Image found on Wikimedia.

I don't know about y'all, but ever since I was diagnosed with Sjogren's syndrome, my dreams have been.....well......really strange. Vivid. Memorable. And in technicolor. Actually, they're usually pretty entertaining. On occasion my dreams seem somewhat sinister, but overall I'd say most mornings I wake up and marvel at all my dream shenanigans. I especially enjoy those dreams that find me flying under my own power in a clear blue sky. Fun.

I guess I've had strange dreams before Sjs of course, but not at least three or more nights per week.

Last night's sleep adventure was a doozy. I was working in a dialysis unit which was located in a school. I was running back and forth between the dialysis patients and the students and things just weren't going well. At all. I woke up frantic, certain that I had left some poor forgotten patient dialyzing away in a corner somewhere. While all my junior - high students were running amok. NOT one of my favorite dreams.

This morning, as I was perusing the posts on the Sjogren's World forum, I noticed a thread that discussed plaquenil (one of the commonly prescribed medications used in the treatment of autoimmune disease) and it's effect on dreams. Everyone imaginable chimed in and agreed that their dreams had definitely taken a turn for the zany after they began taking this medication. I Googled plaquenil and vivid dreams and brought up a zillion pages with links to similar discussions.

Gee. I hadn't thought of linking my weirdo dreams with Plaquenil, but it seemed to make sense. The official FDA information for Plaquenil mentions the possibility of nightmares as an adverse effect of the drug. Well, then, I thought. That explains it.

As I sipped my morning coffee and thought about this latest little information nugget, I took a skeptical look at my pile of medications for the day, and started wondering if any of the other drugs that I pop morning and night may have similar side effects. Sure enough:

I take Klonopin nightly for restless leg syndrome, and vivid dreams and nightmares are listed in it's side effects. My morning dose of prednisone can cause sleep disturbances which may lead to altered dreams. So can the synthroid that I take daily because of my lazy thyroid gland.

Good grief in a bucket. If my dreams were consistently frightening nightmares that disrupted my sleep, I wouldn't have a clue which medication to blame. I'm lucky that my dreams are more often pleasantly adventuresome than problematic.

But then, one should also consider the fact that Sjogren's syndrome all by it's lovely little self can cause sleep disturbances and central nervous system issues, both of which could affect my sleep and thus dreams. You can read more about CNS and Sjogren's syndrome here.

Yikes.

Was the quality of your dreams changed by autoimmune disease?

She's Laughing Again

Was it Emerson that said, Earth laughs in flowers? Why, yes. Yes he did.

Oh, my......flowers. Ahhhhhhh. I love 'em. Just love 'em. In my pre-Sjogren's days, I always had masses of flowers in my garden and yard. There was nothing I loved better than to be outdoors in the sunshine and up to my elbows in potting soil, but over the past few years I've noticed that as my disease became more active, I've been less inclined to put on my gardening gloves. I just haven't felt like it. Gardening took too much of my energy and being out in the sun for any length of time made me feel crummy.

So I was surprised over the weekend as I found myself pushing a wheelbarrow full of flowers, with garden gloves on, and sporting my dumb stupid sunhat. It happened without giving things a second thought. I saw a beautiful day....I had picked out some annuals for John to put in.....and suddenly I was out there arranging plants and pulling weeds with gusto.

Whoa. As the awareness of what I was doing sunk in, I sat back on my heels and put down my garden trowel. I wiped my brow with my sleeve and made a tentative assessment: sweating? Yup. But not overly much. Quivery? Nope. Cold Icy Face feeling? Nope. Tired? A little.

Well, now. I went over to my hammock swing and rested a bit, mulling over this latest unexpected energy burst. It seemed too good to be true. I rocked gently in the swing, waiting for the familiar after-exercise crash to appear, but it didn't.

It didn't.

I slid out of the swing and decided to push things a bit further. I put my gloves back on and headed out into the sunshine to pull some pesky weeds out of my blueberry patch. Dumb stupid weeds. As I yanked out an impressive pile of greenery, I was astonished. This felt so good. So NORMAL. So.......Julia. So OLD Julia.

And, just like OLD Julia, I completely disregarded those signals that my body was sending me and before long, ended up back in my hammock drenched in sweat with muscles quivering. Rats.  It didn't take long before sjoggie Julia made her return, but what a treat those energy-filled few minutes were.

Dang. I hope that the old Julia returns soon.

Notice the cute little Ladybug tag on my garden shoes? And notice that they're CHEWED? I wonder by whom......

Gosh. What a doggone mystery.

Shushed. For Shame!

I've been thinking about whether I should write about an incident that occurred on Sunday.

It's kind of stupid, which means that of course I will.

Ever since Anita, who writes the amazing foodie blog Aunt Nubby's Kitchen, shared her story about stuffing her cell phone into her bra and having it ring during a church service, I have realized that my bra is actually a pretty good phone stash spot. Especially since my favorite pants these days don't have pockets.

So I just want to point out early on that this incident is all your fault, Anita. Well, and as usual, Terese figures heavily into the guilt side of this episode as well.

So my iPhone was safely tucked away in my bra, and I had silenced it before we headed to church. I forgot that even in silent mode, my phone vibrates. We had just taken our seats in church. I had just rolled my eyes at John because the kids behind us were yak yak yaking. And then.......my right boob vibrated. I was momentarily taken aback until I remembered that my phone was the cause and that someone had sent me a text message.

I had to think about whether or not I should retrieve the phone in view of the fact that I had just been sarcastic about kids not paying attention in church, but my curiosity got the better of me and I yoinked it from the front of my sweater. Surreptitiously, I thought, but John noticed, of course. And rolled his eyes right back at me indicating that he thought using my phone was probably worse than the kids yakking in the pew behind us.

So the source of my boob vibration was none other than Missy Terese, who was directly above me in the choir loft.

Yes. Gasp. Terese was texting during church.......for shame.

I hid my phone in the hymnal while I read her text and noticed that her phone auto-corrected her name in the text from "Terese" to "ReTweet". Ha! Snort! At this point, I got an elbow nudge from John. (BICJ started to blow a raspberry at him, but I stopped her just in time.) Guess the phone wasn't as hidden as I thought. After the service was over, I hoofed it up to the choir loft. As the church emptied, John and I and Greg plopped down on the back row of the choir chairs.

"Hey, RETWEET!"

Terese laughed. "Stupid autocorrect!"

I waggled my index finger in front of her nose. Haven't we had this discussion before about not texting during church?!

(We have. She's done it before. For shame.)

"Well, didn't you have your phone off? During CHURCH?!"

No, I had it on silent. Which meant that when you texted me, my boob vibrated. Like this.  BRBRBRRRRRRRR! The shimmy at the end added a realistic touch, I thought.

 "Hey! Watch this!" Terese announced to the choir members filtering in for the next service, and whipped out her phone to send me another text.

I immediately covered my chest with that week's bulletin. Gasp! No Way! I'm such a modest person!, I exclaimed. We all snickered and cackled and immediately were shushed by someone, after which we decided to move our party down to the coffee and donuts in the basement.

That's right. I was reprimanded in the choir loft. Sniff. Honestly. Imagine someone wanting a peaceful and respectful setting to pray. Tsk.

So yes, my right boob was vibrating repeatedly during church, I was shushed, (For shame!) and the cause was my very best friend. AND she wanted me to repeat the incident in public! In a choir loft!

Anita....Terese....my, my, my. What AM I going to do with you two....?

Is It The Frosting?

After Mass yesterday, John and I and Greg headed downstairs to the church basement hall for the usual "After-Mass-Donuts-And-Coffee" social. I was cruising the snack table and stopped to read this sign.

I was stumped. Wordlessly, I pointed to the sign with raised eyebrow and looked at my friend Fran. She laughed. "We've had that thing forever. Every now and then somebody puts it up just to see if anybody actually reads it. And then we crack up at their reactions."

Who says church ladies don't have a wicked sense of humor?

It's Time....

Maybe I need to get myself one of these cool alarm clocks, found here. 

I've observed an interesting pattern of events over the past several days.

The pattern relates to my least-favorite time of day: that moment when I first open my eyes in the morning, er.....rather when I first pry my eyes open......

Typically over the past several years, waking up for me is a long and drawn out process. It goes something like this. Early in the morning, I gradually drift into semi-consciousness and take note of the amount of light in our bedroom. Completely dark? Drift back down into sleep, or alternately; sleepily pad off to the bathroom and then plop myself back into bed, after which I go back to sleep and inevitably find myself in a very weirdo dream.

Happens every night. The weirdo dreams, I mean. I have posted earlier about a potential link to plaquenil, Sjogren's syndrome, medications in general, and altered dream states, and I'm certain that for me, this is true. Whew.

So then at some later point in time, I would repeat the process, and if the room was sufficiently light, I'd allow myself to point one crusty eye at the clock, then decide if it was time to get up.  And, to try to recollect if I had anything scheduled for that morning. Which usually there isn't, unless it's a doctor's appointment or a Friday morning volunteer session. And even if there is........it's hard. Hard to motivate myself to get up and at 'em for the day. I head bleary-eyed to the bathroom and have this longish inner debate about the benefits of showering and shampooing frequently. Some days, this results in my heading downstairs fully dressed sooner than others.

Fast forward to about a week ago. I remember the first morning in particular, when my awakening took me back years and years to a response that I had all but forgotten: panic.

Not as in a panic attack, or anything like that. More like yikes-look-what-time-it-is-I'd-better-get-my-sorry-butt-out-of-bed feeling.  A how-on-earth-did-I-let-mysef-sleep-this-late feeling.

The same feeling that I had every stinkin' morning when I was in college because I inevitably stayed up too late, then kept hitting the snooze button on my alarm clock, and only regained consciousness when somehow I knew that my quota of snoozes was used up. At which point I would jump out of bed, not motivated by a generally energetic feeling, but rather from fear that I had missed my first class or clinical for the day.

So. Last week, I began to relive these '70s mornings in a dramatically different location and body.

I still have to pry my eyes open, but when I do, instead of lazily guessing the time of day, I frantically sit up and grab my alarm clock, after which I either breathe a huge sigh of relief and turn over and go back to sleep, or I spring -- yes, spring -- from bed with a feeling of urgency to get myself dressed and going.

I haven't sprung from my bed in forever.

So I'm guessing that this change in early morning energy patterns has something to do with my rituximab? I hope?

I wish I could say that the same burst of energy, which isn't all that pleasant, by the way -- I hate the feeling that I may be late for something -- is repeated at any other point in the day. It isn't. Dressing and showering still leaves me exhausted. I still end up foggily misidentifying items in my pantry resulting in strange breakfast items. I still experience that strange cold-icy-skin-on-my-face sensation when I exceed my energy limits.

But.

This new, but actually very old, frantic morning feeling and my increased saliva production gives me a small inkling of hope that........that..........maybe.......

I'm almost afraid to say it. So I won't. But y'all know what I am thinking, don't you?

Sjogren's Syndrome Video: A Place to Begin

Yesterday, the Sjogren's Syndrome Foundation put up a status on facebook which linked to an excellent video. Entitled "Sjogren's Syndrome: A Place To Begin", it's a great informational tool for newly diagnosed sjoggies, their families, and friends. It can also be found on the Sjogren's Syndrome foundation site, here. This 25 minute video is a compilation of an earlier series of six videos on YouTube, found here.

It was interesting to me to note the large amount of discussion and time spent in this video discussing the fatigue and brain fog issues associated with Sjogren's syndrome.

Yesssss. These people GET IT.

For most of us, it's not just dry mouth and dry eyes, people. Pour yourself a cuppa and pull up a chair to watch this really well done video.

Irresistible

Craving-inducing, mouth-watering image found here. Dang. 

While cruising Goodwill's book section the other day, I spied and snagged the sequel to Chocolat: The Girl With No Shadow by Joanne Harris.

Good grief.

In spite of the fact that the plot line is completely mesmerizing and the characters intriguing, I just can't in good conscience recommend this book to anyone.

Really.

I didn't read the book Chocolat, but had seen the movie, so I thought I was prepared with the basic premise of the story, and that the sequel would make sense. And it did. But what I wasn't prepared for and isn't really exploited fully in the movie, is the real main character: chocolate.

Chocolate in all forms described in exquisite detail. Confections. Truffles. Creamy milk, white, and dark chocolate. Forms of chocolate candies that I had never heard of before but instantly craved. Hot chocolate spiked with liqueurs served by the steaming mugful. Pastries and cakes baked with sumptuous amounts of chocolate. I could go on for paragraphs and paragraphs here, but to save my very tenuous grip on healthy eating, I won't. Breathe, Julia. Just breathe.....

I read The Girl With No Shadow in a 24 hour span, mostly at night, my eyes gobbling up the text as eagerly as I would have eaten all those chocolates that were so amazingly described. And, in the morning, after a few hours of sleep, I immediately headed down to the grocery story to score a few bars of dark chocolate. I burrowed around in my pantry to find a tin of high-quality drinking chocolate that my daughter had given to me at Christmas.

And so while munching on 72% Ghiradelli and sipping Theo dark sipping chocolate, I finished reading the book by noon.

The ending of the book was completely satisfying, but my craving for chocolate wasn't.......which is why I am still struggling here...I know. I'm hopelessly and pathetically gullible to suggestion. But there's hope for y'all, which is why I put up this post.

Consider yourself warned.

Silence is Golden

Y'all know how much I love Maggie and Lulu, my two miniature schnauzers. They're such good buddies and have provided countless hours of friendship and diversion when I really need those things. I love how they snuggle in with me whenever I get horizontal, be it on the couch or in my bed for a snooze. They're fiercely loyal and loving and intelligent.

But....they're yappy. Extremely talkative and barkey. Sometimes they're downright sassy and can be very disruptive when we're trying to entertain guests.

So when my friend Karen came to visit last, and I was bemoaning the fact that ear-splitting schnauzer chaos ensues every time my doorbell rings, she asked if I had ever considered an anti-bark collar for the girls.

Well. I would NEVER consider a shock collar, watch this:

......but that wasn't what Karen was referring to. She meant the kind of collar the spritzed a teensy amount of citronella whenever the dog barked vigorously.

This kind:

Dang. You can find anything on Amazon. And no, I don't get a stinkin' thing from them for saying that.  

I was dubious. But a few days after our discussion, I was trying very hard to get some sleep to fend off a major crash. I was cranky and really really tired. As usual, the girls were packed in on either side of me in bed, and as usual.....every time a person walked by the house, or a squirrel sat on our fence, or someone rang the doorbell, BOWOWOWOWOWOW YAPAPAPAPAPAPAPAPAP, JUMP OFF THE BED, JUMP BACK ONTO THE BED, RUN IN CIRCLES WHILE BARKING AND HOWLING.

I grumpily decided that I would do a bit of research and then maybe.....try one. Or two.

So, I did. And I did order two. And I have to say that our house is a much quieter place these days. I had John assemble them and fill the cartridge in the collar with the citronella spray, then we sat back to see what would happen when Greg arrived on our front porch.

BAARRRR......

Silence. They didn't even finish their first bark. Both Mags and Lulu looked surprised. Amazed. So did John and I and Greg.

We don't leave them on the girls for long periods of time, just when we know that there will be some likelihood that an incident would happen that would incite a schnauzer meltdown episode.

We are using them as temporary tools, with the goal that once their behavior and response to barking triggers has changed, that they will not need the collars, and so far, I have noticed some behavior changes already. Before the use of the collars, just telling the girls that they were going to do anything -- a ride in the car, a walk, even the fact that they were going to go out in the back yard -- was followed by puppy pandemonium.

Not so much, anymore. It's so nice to be able to ask Maggie, "Do you need to go outside?" and her response is to wag her tail furiously and head down the stairs towards the backyard door without yapping. Even without wearing her special little collar.

Yesss.

You know where I HAVE to go with this line of thought next, don't you?

Of course you do.

I want one.

I want one of them that's triggered whenever I eat something that's not on my new lower-sodium, low-fat, low everything diet. The crackle of opening a bag of potato chips?

Psssttttttttttttt. "Aaaaaaaaahhhhhhhh!"

Ordering a large candy-bar Blizzard at the Dairy Queen drive thru window?

Psssssttttttt. "EEEEEEeeeeeeeeee!"

Grabbing the salt shaker at the dinner table?

Psssssttttt. "(Expletives deleted)!"

But......I suppose then there's the distinct possibility that BICJ could persuade me that I LOVE the smell of citronella. And a large black and chunky metal collar looks quite chic. She's so problematic, that Bratty Inner Child Julia.

Hm. I wonder if the actual problem with the schnauzers is that they have a Bratty Inner Schnauzer Child? And that they, too, struggle with controlling that bratty persona that always manages to win the battle between impulse and reason?

I think that's why I love them.

Stress and Saliva

You can buy your very own ladder safety poster from Stan's Safety Posters, found here. 

I received this excellent question from Gill recently:

Incidentally, is saliva production halted when there is major stress?  Have noticed a marked difference, for instance, today I was frightened that I was about to fall off the top of a step ladder and the saliva vanished........When the stressful situation is over, back comes the saliva.

First of all, I was really impressed with Gill's ability to evaluate Sjogren's symptoms AS THIS PERSON WAS ABOUT TO FALL OFF A LADDER.

Wow. That's amazing. See, I would be all flailing around and screaming and just freaking out in general. But Gill? Thinking probably calmly, "Drat. I'm falling off a ladder......Hm. My mouth is really dry right now. I wonder where the saliva went?"

This is the kind of person that I aspire to be. Seriously.

But back to the excellent question: Does stress influence saliva production?

Yep. It sure does.

The production of saliva is controlled by several factors, one being a very complex neurological network, two components of which I'll discuss here. Please note that I'm simplifying things dramatically. It's the only way that my brain can handle this kind of stuff anymore.

The answer to the question lies in describing the sympathetic and parasympathetic nervous systems.  Simply put, the parasympathetic nervous system is responsible for the "rest and digest" functions of the body. The sympathetic creates the "fight or flight" response in a reaction to stimulus outside of the body, such as the stress created by a wobbly stepladder. And the fear that one may be crashing one's body onto a hard surface.

Here's an explanatory graph created by Dr. Sumaiya Khan, found here.

Parasympathetic Nervous System	Sympathetic Nervous System
Constriction of pupils	Dilation of pupils
Stimulation of secretion of saliva	Inhibition of secretion of saliva
Decreases the heart rate, thus, causing a drop in the blood pressure	Increases the heart rate, thus, causing an increase in the blood pressure
Constricts the bronchi and thus, decreasing the diameter of airway	Dilates the bronchi, thus, increasing the diameter of airway
Stimulates activity of the digestive system, like stimulation of peristalsis	Inhibits activity of the digestive system, like inhibition of peristalsis
Stimulates gallbladder secretions	Decreases gallbladder secretions
Contract urinary bladder	Relaxes urinary bladder
Relaxes rectum	Contracts rectum

Note in the second row that the sympathetic nervous system (the one that is triggered as one falls off a ladder) when stimulated inhibits the production of saliva.

The parasympathetic and sympathetic nervous system cannot both be active simultaneously. Dr. Khan explains, "Thus, as can be inferred from the above given table, the responses and effects of both the systems are complementary in nature, rather than being antagonistic. The sympathetic division acts as the accelerator and the parasympathetic division acts as a decelerator of the human body. Thus, these two systems try and maintain the body in a normal state of homeostasis for the maximum possible time. At a time, only one of the two systems are activated in the body, depending on the type of innervation brought about and the hormones released."

In other words, a Yikes-I'm-Going-To-Fall experience will inhibit the secretion of saliva.

So, yes, Gill, acute stress does temporarily halt saliva production. That is, until the parasympathetic nervous system kicks in once the stressful incident has passed, and resumes it's normal messages to the salivary glands to produce saliva.

But wait -- there's more!

The nervous system uses special biochemicals -- or neurotransmitters -- to facilitate stimulus transmission through it's network of nerves. Sjoggies should be particularly interested in the neurotransmitter acetylcholine, which is used by the parasympathetic nerves to send their messages, including the ones that stimulate the production of saliva.

The two most commonly used drugs which increase the production of saliva, Evoxac (civemeline), and Salagen (pilocarpine), are considered cholinergic agonists, which means that the drugs enhance the effects of acetylcholine.

If you take either of these medications, you probably have noticed that they do cause an increase in saliva (if your salivary glands have functioning tissue) but that they do also have side effects, which may include increased sweating and some gastro-intestinal symptoms. This is because acetylcholine is instrumental in these body functions too, and these functions will also increase along with salivation.

If you are experiencing side effects while taking civemeline or pilocarpine, talk to your doctor.

Enough biochemistry for the day. My brain is strained.

See y'all tomorrow.

Well, This is New....

John has acquired a new skill: he's learned to take my blood pressure. Not because he's inquisitive about that sort of thing, and as far as I know has never wanted to be a health care provider.

Nope. He HAD to do it because I asked him nicely. Over the past few months, my blood pressure on my office visits has been on the rise. Dr. Young Guy asked me to take and log my blood pressure daily and report back to him. Since I only own a basic blood pressure cuff and stethoscope meant for clinical use, it's kind of awkward to take my own BP. It's possible, but then I always like to do things the easy way.....and what's more easy than having John do it?

Plus he looks kind of spiff with a stethoscope hanging around his neck. I love a man that knows his way around a sphygmomanometer.....

He was a quick learner. And actually taking a person's blood pressure isn't exactly rocket science. It helps if you put the stethoscope ear pieces in the right places and become familiar with how that tricky valve on the inflation bulb works, and just practice, practice, practice.

You can read more about blood pressure readings here and what they mean, but we all know the gist of things: High blood pressure is hard on our bodies. It's bad for the heart, the lungs, the blood vessels themselves, the brain, and especially the kidneys. What's a high blood pressure reading? According to the National Institutes of Health:

All levels above 120/80 mmHg raise your risk, and the risk grows as blood pressure numbers rise. "Prehypertension" means you're likely to end up with HBP, unless you take steps to prevent it.
     If you're being treated for HBP and have repeat readings in the normal range, your blood pressure is under control. However, you still have the condition. You should see your doctor and follow your treatment plan to keep your blood pressure under control.
     Your systolic and diastolic numbers may not be in the same blood pressure category. In this case, the more severe category is the one you're in. For example, if your systolic number is 160 and your diastolic number is 80, you have stage 2 HBP. If your systolic number is 120 and your diastolic number is 95, you have stage 1 HBP.
     If you have diabetes or chronic kidney disease, HBP is defined as 130/80 mmHg or higher.

My recent blood pressures were running around 160/100. Ouch. Not so great.

Which brought up the question -- what's going on here? Previously, as in up to just a few years ago, my normal blood pressure was 110/60 or so, sometimes even lower.

Dr. Young Guy is strongly suspecting that the culprit here is one of my medications: Gengraf, or cyclosporine. This drug is used to suppress the autoimmune response but is also used in the treatment of rheumatoid arthritis and organ transplantation, among others. Included in it's lengthy list of side effects is an elevation of blood pressure. You can read more about cyclosporine's effect on blood pressure and other side effects here and here.

After an exchange of e-mails yesterday, (wow, I love that service through my health care provider) we have decided to discontinue the use of this drug, to continue to check and log my blood pressure daily, to e-mail the next two week's worth of readings, and to return to see Dr. YG for more labwork to continue to assess my kidneys, and an office visit, in a month.

I suppose it would also be a good idea to do those dumb stupid logical lifestyle things that help reduce blood pressure: reduce the use of salt and sodium intake, eat an overall healthy diet, get regular exercise, blah blah blah......I suppose......but really. How bad could a few nice salty crispy potato chips be, in all actuality....

.::blink::.

BACK, BICJ! This is serious stuff. I'm not going to allow my bratty inner child to lead me down the hypertension highway.

I'll keep y'all posted.

Have You Read This One?

The May update from the Sjogren's Syndrome Foundation includes this review of a book which may be of value to those sjoggies balancing work with autoimmune disease:

Women, Work, and Autoimmune Disease  

Women, Work and Autoimmune Disease, by Rosalind Joffe and Joan Friedlander, is a book for women living with chronic illness that encourages them to stay employed by utilizing specific tips and tactics to be successful.   

The authors take a hard, yet inspirational look at what it takes to be successful in a job while managing a chronic illness, including developing strategies and tactics, evaluating communication skills, building a support team, and considerations for self-employment.  

This light read will encourage you to take control of your professional career. First-person accounts in the show how women challenged themselves to keep working and illustrates the importance of finding a balance with managing ones chronic illness and working.

Click Here to purchase the book online (you must login first to receive your member discount for online purchases) or by calling the Foundation's office at 800-475-6473

Member Price: $14
Non-Member Price: $17  

I haven't had an opportunity to read this book. Have you? What did you think? Let us know.
   

How's That Workin' For You?

Image above, about which I know NOTHING, found here. 

Lots of folks have been inquiring whether I think that my new medication -- rituximab -- aka mousie meds -- are doing any good.

Let's see, now. My first infusion was April 17th, and then my second was on May 1st. Dr. Young Guy told me that I should wait at least four weeks after my second infusion -- and that some people need to wait three months -- before I evaluate if it's doing anything for me.

I have been trying to be patient. But I think it's just human nature to want to explore and examine my response. So of course I have, at every opportunity. Here's my reaction, so far:

Well, the rash that plagued my chest and back is gone. Woo hoo! But I realize that this may be due to to the high doses of prednisone as much as the rituximab, so the jury is still out there.

I wish that I could report that my fatigue levels have been much improved, but dang. Not yet. I have been unusually busy over the last month, however. Who knows how I may have responded otherwise?

The one thing that I do know with some certainty is that I have been making more saliva. Yesssssss.

This awareness really sneaked up on me. I gradually realized that I was....swallowing something.....more. And that I actually did drool onto my pillow after a long afternoon nap. I find myself feeling as though I don't know what to do with this mysterious fluid pooling next to my cheek and gum.

Heck, yeah!

I reported this to Dr. Young Guy with excitement at my last visit. He took a look into my mouth and said that he too noted some "pooling of saliva".

Hehehehehe. Y'all know what this means, don't you?

Think, people.

Yes. It means that the next Terese/Julia vs Greg/John battle will include a new secret weapon: spitballs.

Why?

BECAUSE I CAN.

Step Right Up, Folks!

Anyone who has had to endure those days in which one has to be boringly rest-ful knows that those hours pass sloowwwwllly.

I try to amuse myself with normal things during my down days, really, I do. I watch movies, I read, I call my mom, I text my kids. But I can only tolerate a certain amount of normalcy in my day.

It's times like those that I find entertainment in the darndest places. Like yesterday morning, for example. I'm definitely on the upswing, energy wise, but still metering it out pretty carefully. So I opted out of my usual Friday morning volunteer time at church and sat around twiddling my thumbs.

Twiddle twiddle twiddle......

Then I realized that it was time to fill my medication boxes. Whoooeeeee. Big fun, that. BUT - a low energy task that needed to be done. So I grabbed my blue shoebox full of pill bottles and sat down to start counting the little rascals.

I have come to appreciate a talent developed after years and years of practice filling two weeks worth of plastic boxes: I can pour a handful of pills and determine their heft and weight, then decide approximately how many are in my hand. I begin dropping them into their slots, and whaddya know? There are many, many times that I have estimated the exact number of pills that I need.

Amazing! Astounding! Cue the circus sideshow music! I need to go on tour and charge outrageous amounts of money for people to view my pill skills!

Terese can be my barker. No, wait.....she can play the steam calliope! We'll make a fortune.

Strange. I'm suddenly craving cotton candy.......

You can buy your very own circus book pictured above here. 

Plug 'Em In

They even come in a handy dandy little travel case. Ooo. 

Travel can be exhausting, can't it? Lugging around luggage, (Hey -- is that why they call it luggage? Hm.) finding one's way around airports and train stations and new cities, crossing time zones......yeah. It all saps energy.

I think that just dealing with everyone that you meet while traveling requires energy, too. Hello, Miss-Not-So-Perky ticketing agent. Hiya, Mister-Sullen-Couldn't-Give-A-Rip airport restaurant waiter. Nice to meet you, Madame Let-Me-Tell-You-My-Entire-Life-Story-All-The-Way-Across-The-Continent-While-Stuffed-Into-The-Airline-Seat-Next-To-You.

My goodness.

This go-around, I brought a secret weapon with me. I yoinked this idea from my kids who have told me their methods of avoiding unwanted contact with others while living in a big city: putting something in their ears.

In their case, they just take their iPod earbuds and jam them in their ears whenever they walk anywhere downtown. The girls tell me that this works amazingly well. Especially if they whistle or hum softly while they walk. Oh -- and they tell me that they have to adopt this glazed-eye kind of thing. An expression that just screams "leave me alone! listening to my tunes here!"

So I picked up a set of earplugs that are attached to a length of cord. I can sling the set around my neck and stuff those babies into my auditory canals whenever I want. The effect is pretty impressive in that not only does it deter others from interacting with me (take that Madame I'm-Talking-Loudly-Because-I'm-Nervous-On-Airplanes), but it also keeps me from initiating contact with others.

It's not that I want to be antisocial. It's just that when faced with an entire day's worth of travel, I have to meter out every teensy bit of energy so carefully. If I spend it all yakking for four hours while zooming across the continent, then I will have considerably less reserves when the plane touches down.

The plugs also provide a shield of sorts from really annoying sounds that zap energy simply by being there, like the screaming baby seated just two rows behind me. Oh, those poor parents.......have been there, done that. I know how hard it is for infants and children to travel, gosh. But it takes energy just for me to listen to their angst and discomfort, and those magic plugs muffle those noises down to an almost ignorable level.

When I put in those plugs, I've learned to adopt a relaxed, closed-eye pose. I uncross my legs. I put my hands in my lap. And then I try very hard to zone out from all of my surroundings. Sometimes I actually fall asleep, other times I just try to meditate. If I'm mindful of maintaining that state, I can actually feel myself restore bits and pieces of my energy, rather than dole them out.

Sounds like a pretty spiffy idea, right?

It is, for most of the time. But, of course, there's those times when earplugs are pretty useless. I'll betcha you can think of a million of those instances: when the person sitting two seats over next to the window decides that they want to visit the bathroom about every half hour or so requiring all three of us in the row to unbuckle and unsquish ourselves from those teensy cramped seats. And then resquish ourselves back in on their return.

Or when the lady directly in front of me first spritzes herself with strong perfume, then leans her seat back, sending a cloud of asthma-inducing vapors directly my way.

Or.....well, you get the idea.

But I think that the more little tricks I have tucked up my traveling sleeve, the better I tolerate galavanting all around.

And that's a very good thing.

New Family

Recently, my son's fiance and I indulged in a mom/daughter pedicure. I think of her as another of my girlies -- the term daughter-in-law just doesn't seem to fit. Doesn't she have cute toes? 

After our wonderful trip East, I'm still recuperating. But also taking this down time to mull over a few things.

First and foremost, I'm realizing how fortunate I am that my kids have chosen such amazing people to marry. It goes without saying that my kids are fortunate too -- but isn't that what a parent prays for always? That their children as adults can find a life partner that is a worthy partner in every sense of the word? Someone who cherishes them and understands them and laughs at the same things that they do?

Of course we do.

What I forgot in my contemplation of all this kind of stuff, is that D#2's family was praying for those same things for their son. And so as we all gathered last weekend, it was such a gratifying thing for both families to see their adult children welcomed into their new extended families with open arms. Her fiance's mom and dad told John and I repeatedly how much they adored our daughter; and it was evident in the way that they hugged her and smooched her whenever they could. They also expressed their happiness in the love and acceptance that we were so open in sharing with their son.

Sigh. Happy times.

As we all prepared to head back to the airport, Fiance's mother and dad took John and I aside. Fiance's dad blinked back tears as he put a hand on John and my shoulder. "I just can't find the right words -- but I want you to know how much your daughter means to us. She's just what we had always hoped for our son."

Fiance's mom nodded her agreement. "God is so good."

Group hug, people!

She laughed. "I was so NERVOUS before meeting you!"

Oh, girl. I was too! I told her.

So as I'm here napping with the schnauzers next to me, I'm happily remembering these exchanges.

And then I realize yet another marvelous thing: That this same nervous-yet-excited meeting took place not so long ago with my son's fiance's family. And that we both had the same experience, just expressed in different words, but with the identical sentiment:

Thank you for your son/daughter! Thank you for helping to form them into the wonderful people that they are! And thank you, God, for bringing us all together!

Ahhh. Life is so good.

Recharging

Still resting up from all my adventures over the past week.

All of which were awesome and totally worth the fatigue that I'm experiencing now. I'm taking today as a complete rest type of day, and tomorrow plan on getting a wee bit of exercise to test my energy limits.

Here's some more pictures from our trip. I can't wait to go back and explore more of New England.

Ah, To Be Young....

.......and engaged. This wedding will be such fun.

Travel Day

Guys.

I have so much to share with y'all. I can't wait to get to a proper computer to download pictures!

Happy Mother's Day! From one VERY happy mom...

Busy busy busy...

I wish I had enough energy to properly explore this beautiful area! As it is, however, I'm just thankful that I've been able to hang in there through all the tasks ( talking to florists and bakeries and caterers and church folks) and remain upright during the socializing.

As always, being near the ocean seems to bring me renewal so quick catnaps in the B and B while listening to the waves have been my salvation.

Oh, and Terese? Remember your JOB while I was on this trip? The one where you were supposed to send "anti-blab" vibes my way?

And John, honey? Ahem? The SECRET WORD strategy?

Sigh. Not working. Not working at all, people.

I think our problem here -- yes, the dreaded flapping Julia lip syndrome -- was seriously exacerbated by the addition of a very nice pinot noir to the mix over dinner last night.

And I was doing SO WELL up until that point.

I suppose these nice people were destined to learn the truth eventually. And, I suppose that I am fortunate that I have avoided any major goober incidents or wardrobe malfunctions ...... so far.

Send good thoughts my way, guys.

Love It

We are staying at a quaint B and B with quite the view. I can't get my phone to behave, however, to show you the gorgeous pics! Grrrrr.....See y'all tomorrow.

We've Arrived!

Guys. I made it aaallll the way across the country not only in one piece, but also arrived semi-conscious and enough energy to last through dinner.

Which was delicious, I might add. I have never enjoyed a lobster roll before and mmmmmmmmmmm.... Succulent lobster meat in some kind of dressing piled high on a freshly baked hoagie roll.

The first wonderful round of introductions have been made, dinner finished, and now it is truly time to tuck this old sjoggie into bed.

Hm. Flawless flights, easy connections, meeting folks who already seem to feel like old friends, yummy food, and now hopping into bed while listening to the ocean directly outside my window.

Not bad. Not bad at all.

It's Nice To Meet You

Well, I'm off on my latest adventure.

After doing a really good slug imitation for the past few days, I think my energy stores are sufficiently restored to allow me to look forward to the weekend.

It's a biggie.

We are flying to the East coast to meet D#2's soon-to-be inlaws. Although we have exchanged several phone calls and emails and texts, this will be the first time that we will all gather in person together.

I'm a bit anxious when I am introduced to someone. And, unfortunately, unless I am really in control, BICJ manages to unleash her silliness in full force when I'm a bit anxious. Yes. My Bratty Inner Child Julia.

In this particular setting, BICJ goes into a blab, blab, blab, blab........tee hee hee chortle giggle....blab, blab, blab, blab mode. This wouldn't be so bad if I was actually blabbing something coherent and gracious. Pffffft. Never.

So I'm wondering how I can tell BICJ to put a sock in it for the weekend. Hm.

Medication? Not an option. My yippee skippee pills -- aka Provigil -- only ramps the blab factor up higher. Definitely not a good idea.

Duct tape? Perhaps. I'll have to tell John to throw a roll in his carry on luggage...

Ah. Maybe this: John and I need to work out a communication system in which he assesses my blabbiness and if he determines that I've red-lined it, he will send me a signal which will remind me to settle down.

Signal.......well, now.....he has this great expression in which he raises his eyebrows REALLY high up on his forehead. I wonder if the eyebrow thing would be as weird as the blabbiness thing, however.....then our new in-laws would realize that they are meeting TWO strange strangers. Better that they don't know the truth about that until after the wedding. Well, at least until the kids have exchanged their vows and it's official. Definitely.

I suppose he could reach over and hold my hand, if he's close by. But we like to mix and mingle when we're at a gathering, so the likelihood of him standing next to me is pretty small.

John says that a code word is the best solution. He could use this word in a rather loud voice, so that I could hear it from wherever I happen to be. Okkkaaaayyyy. I could consider that. But I'm not liking his first choice of the word, which is MYNA. Which refers to the very vocal myna bird.

Hahahahahahahaha. Very funny.

Not.

I'd love to see how he could work THAT one into a conversation without looking stranger than a blabby wife could ever be. The code word is going to be our topic of discussion on the very long flight across the country today. I'll keep y'all posted. And wish me luck.

Here's a recording of someone's myna bird meowing. Interesting. Myna bird image found here.

Don't Tell Anyone

Image found here. 

Wanna hear something really gross?

Of course you do. Just don't read this over breakfast.

The last time I saw my dentist, after he took a look-see around my mouth and throat, he told me to go see an ENT -- ear, nose, and throat doctor. "Because you have a .......... um .......papilloma on your left tonsil stalk."

A what?

"A growth caused by the human papilloma virus, also known as a wart."

Say WHAT?

"Got any other warts?"

I beg your pardon.

"Well, now, Julia. You know what a wart is. I know that you know what HPV is. So spill."

OK. If you must know.......I have a plantar wart. And a wart on my hand. And..............sigh.............a wart on my nose.

(Wow. I've never made that confession before, people. What kind of person has a wart on her NOSE? And now on her left tonsillar fossa? The shame. The heartbreak and shame.....)

"The reason I've asked -- as I'm sure you know -- is that when people are immunosuppressed, especially to the degree that you are, it's easy for other opportunistic viruses to spread. And if you've got one wart, it's almost a sure thing that you'll get another. I'm pretty certain that this is just a benign little papilloma, caused by an HPV virus, but I want an ENT to check this out."

Silence.

"Julia. Speak to me."

Ok. Ok, already. But it's ANOTHER doctor visit and ANOTHER co-pay and.......well......do I have to tell them about my other warts?

"Yes. Yes you do. So there." He grinned. "But don't worry. Your wart secret is safe with me." And made a zipping motion across his lips.

So today, I dutifully showed up for my first appointment with a brand-spankin'-new ENT physician, a lovely young lady with a huge smile and a very gentle demeanor. She had the grace not to cringe when I mentioned the W word.

Actually, she didn't even seem a bit grossed out.

"So you and I should probably be in touch periodically," she mused.

For wa.....war.....papillomas?

"No. Because of your Sjogren's syndrome. I can see the changes that a dry mouth have made on your oral mucosa and actually........you may have a teensy bit of thrush beginning on the far corner of your soft palate."

Wow. She seemed pretty knowledgeable about Sjs. I liked her immediately.

"So. I'm going to do a very thorough comprehensive exam today since you have an ongoing condition which affects -- obviously -- your throat and mouth. And I'm going to remove that little papilloma and send it down to the lab to be examined."

She wasn't kidding about a thorough exam which included threading a small fiberoptic scope down through my nose all the way to my toes. (Not really. It just felt that way.) I believe she stopped just shy of my vocal cords. But it was expertly done and was remarkably comfortable.

I really, really, liked this new doctor. "So. What about this......w......wa......wart on my nose?"

She took a nasal speculum and looked into my right nostril. "That? That little thing?" 


I nodded.


"It's pretty small. And I couldn't even see it until you tipped your head way back. It's kind of on the inner edge of your nostril."

But it really bugs me.

"I'm pretty sure that I could excise it, but I don't have time today. If you want to come back, I'd be happy to remove it, but actually it will probably just grow back. Sorry."

Do you promise that it won't show on all the family pictures coming up with TWO weddings this year?

"Wow. Two weddings? Um, yep. I'm sure. But just make an appointment and come back if you think it's going to be noticeable. We'll take care of it, at least temporarily."

I left after she numbed then snipped a very small little piece of tissue -- the dreaded papilloma -- from the back of my throat.

So there it is, folks. Promise me you won't think less of me......yes. I am a warted woman. Now you know my deepest darkest secret.

Just remind me before the wedding NEVER to tip my head back and thus expose my.......wa.......war......papilloma.

A Hammock is a Great Place to Think

We've been blessed with spectacular weather over the last few days, and the forecast looks great for the rest of the week.

I figured it was time to bring out my boingy-boingy hammock chair. Ahhhhh. I love this thing.

So I was swinging and enjoying the cool clear evening last night as I happily remembered last weekend's events. I still need time to comprehend the amazing wedding shower that my friends put together for my son and his fiance. I wasn't allowed to do a thing.....as a matter of fact, as I was taking a two hour mid-morning nap before the shower, my friends were bustling around downstairs making everything perfectly beautiful.

Before I headed upstairs for said nap, I was watching Paul washing up the breakfast dishes and Karen and Sarah wiping down the countertops. "You know, it's so hard to just let you guys do all this...." I said.

Karen stopped mopping the counter and looked at me. "You want us to not do so much? We don't want to hurt your feelings or anything." She looked concerned.

I laughed. "Well, I wouldn't go that far.......nah, just keep on keeping on..." and headed up the stairs listening to them chuckle.

But it is an interesting mix of emotions, I thought. On one hand, it's so hard to swallow my pride and let others do tasks in my own house. But -- had these good folks not done the work, and I had attempted to, two things would have happened: first -- the shower would not have happened. I just wasn't capable of putting out that much energy. And second -- even if I had somehow put something similar together, I would not have been conscious for the actual party.

So. Pride swallowed. Julia rested. Party perfect.

Dang. Once I am feeling better, I need to think of a way to thank everyone. Hm. More mouse cookies?

Party Pics

The Kentucky Derby themed wedding shower was successful beyond my wildest expectations. 

Yes. My cows showed up dressed in their racing silks. 

Don't ask. It's complicated.  

And....we enjoyed mint juleps made from real mint. Aren't the little pots cute? We each got one as a party favor.

Mmmmm. Cake and pie and red velvet cookies......

And there were hats, hats, and more fabulous hats. The bride's hat was especially fabulous.

Everyone -- absolutely everyone -- had a fabulous hat.

All this fabulousness was courtesy of my fabulous friends Naomi, Terese, Susan, Emsie, Karen, and Sarah, whom I cannot even begin to thank enough.

But I can try.

Thank you, dear friends.