Gnome Transformation

This summer found Norman, my garden gnome, in terrible shape. He was a gift to me from Terese for my fiftieth birthday. I felt awful when I saw his peeling paint and cruelly cracked little body.

Usually so cheerful, I couldn't help but notice him becoming increasingly cranky and moody lately. Here he won't even look at me or my camera. Aw, c'mon Norman, old buddy. Give us a smile.

"No!", he said.

I can't explain why his paint has deteriorated so badly after only two years. He is, after all, a garden gnome, known for their hardiness. But I do have to shoulder some blame for the poor guy's cracks. I left him outdoors two winters ago during a bout of freezing weather and he didn't tolerate the extreme change in temperatures. He has been harboring a grudge against me ever since. I can't say that I blame him.

It was time to give Norman an extreme gnome makeover. With the help of some friends and after a trip to the craft store, the magic began.

We started with a bath. He didn't like it a bit. Norman told me that it was undignified.

After some sanding to smooth the rough bits, Sarah began the transformation with deft brushstrokes.

It was a task that required some serious attention to detail. Thank goodness for her steady hand and keen eyesight. Here he receives a new set of beautiful blue eyes. The little rascal told me he was glad that I wasn't the one painting, since he was afraid that I'd make him cross-eyed. Such impertinence.

Norman promised to hold still. I think he enjoyed all the attention from an attractive young lady. As his appearance improved, so did Norman's disposition. He even became involved in some of the decisions, requesting a black belt instead of his original white one. He felt that it made him look more assertive, and provided greater contrast to his snowy white beard.

We thought so, too.

Looking good, my little gnome friend. Am I forgiven? Judging from his smile, I suspect that I am back in Norman's good graces.

Hm. I would probably benefit from a makeover like Norman's. Too bad it wouldn't be as easy as a bath and a new coat of paint.

My Circle

My friend Karen and her daughter Sarah are visiting this week.

I love their visits. Karen and I go way back to college days and we shared an apartment for awhile before I got married. She and I have a million happy memories together - of student nurse uniforms, of popcorn and young adult angst sessions, of exchanging stories about our husbands and kids. We have made time in our busy lives to connect and reconnect over the years even though time and the Cascade mountains separate us.

One of the reasons that I enjoy their visits is that Karen is a member of a small circle of people that really get it when I attempt to share my experiences with autoimmune disease.

I don't have to put up a good front when she is here. I don't have to create bogus reasons to snooze on the couch, suck down large volumes of fluids, or hide out in the shade. When Karen instructs me not to fuss before their arrival, I know that she genuinely means it. My circle people wait for a sincere answer when they ask, "How are you?"

However.

She is also part of that circle of people that keeps me honest.

I would immediately be busted if I were to elaborate or exaggerate any stories from our youth. Although, come to think of it, with a few embellishments, some of those stories would make great blog posts. Hm....

Karen, like others in my circle, can discern my energy levels quickly - even by the tone of my voice on a phone call. Once detected, there's no faking energy that I don't have, no pushing my physical limits. I have learned not to protest when banished to the couch or sent into the air conditioned house.

Those in this circle of people also are aware of my quirky diet restrictions and of my ongoing battle to limit calories. A lift of an eyebrow or a quizzical look can sometimes bring me reluctantly back to the straight and narrow path. The circle folks are supportive, but they also realize in the interests of self-preservation when to back off. There are days when nobody - but nobody - can get between me and that apple fritter without putting themselves in danger of significant bodily injury.

My circle people realize the necessity of living within my limits, yet they also encourage me to continually challenge myself to find activities that keep my limitations from becoming restrictive or boring. I have always benefited by conversations which begin with, "Have you ever thought of....", or "Would you be interested in.....", or "Have you tried.....". Even if the activity hasn't worked well for me, it has provided another opportunity for me to explore my boundaries. My circle keeps me from becoming complacent or lazy.

Everyone deserves a circle like the one that I have been blessed with.

Heat Wave

Here in the Pacific Northwest, we're experiencing some really unusually hot temps. Enjoy this YouTube clip in the spirit of the steamy weather:

Sjogren's and Sleep

Image found here.

Last night was one of those nights.

You know. One from which you awake with gritty eyes, furry tongue, and feeling as though you need another eight hours of nighttime. One that began with creepy crawly restless legs, achey muscles, and burning sensations in feet and toes.

Since my Sjogren's experience began, I have had too many of those nights.

Turns out that I'm not alone, as noted by this study published in Oxford Journals Rheumatology. (Note: pSS = primary Sjogren's Syndrome, RA = rheumatoid arthritis.)

Sleep deficit (difference between need of sleep and actual sleeping time) was significantly higher in patients with pSS when compared with healthy matched controls (P<0.0001),>P<0.001). When trying to fall asleep, patients with pSS were significantlymore often disturbed by muscular tension (45%) and restless legs (24%), than patients with RA (12%, P<0.01>P<0.01), and they were also significantly more troubled by nocturnal pain than patients with RA (P<0.01).> significantly more disturbing by awakening during the night and was awake for longer periods.

Makes sense to me. I can think of several reasons that a Sjoggie would have trouble sleeping. Let's see......there's the obvious discomforts of a dry mouth and dry eyes, with the resulting awakening to drink water, get rid of said water, and apply or reapply eye drops.

As noted in the study above, those bizarre sensations from restless leg syndrome and peripheral neuropathy, as experienced by many Sjoggies, make sleep difficult. Autoimmune joint and muscle pains add even more opportunities to rob someone of restful shut-eye.

For me, there are other reasons why some nights are sleepless, even if I'm not in Seattle....

Early on in my disease process, I would lie awake at night simply wondering what was happening to my body. I didn't have a diagnosis, and obviously no treatment. I tossed and turned, not only from physical symptoms, but also from anxiety and stress. Once I did have a diagnosis, then my late night worry sessions focused around my future with Sjogren's: what would this mean long term for me and my family? Would I feel this crummy for the rest of my life? If not, then when when when would I begin to regain some sense of normalcy? Would I be able to continue to work? If I didn't work, could we survive the financial repercussions of that decision?

Treatment with prednisone added another element of sleeplessness due to the side effect of insomnia. The additional side effect of increased appetite - in my case, carbohydrate cravings - meant that many nights found me chowing down on Cap'n Crunch at two am.

To further complicate matters, when I am unable to sleep, my herd of critters are wakeful too. No matter how quietly I try to get out of bed, Maggie and the gang show up all frisky and ready to play. Or get treats. Which means that settling myself back into bed means getting everyone else quieted down too.

Well. What's a Sjoggie to do?

Some basic guidelines to encourage restful sleep can be found on Sjogren's Syndrome: A Guide For The Patient, which include avoiding caffeine after lunch, basic stretching and soothing biofeedback suggestions, modifying the bedroom environment, and establishing a consistent wake-up time.

I have found that adding a few other modalities help me to be more successful in getting a good night's sleep.

Seeking appropriate evaluation and treatment for my restless legs and peripheral neuropathy was enormously helpful. You can read more about these conditions in a previous post here. The medications prescribed for me are very helpful, and although they do not completely eliminate my symptoms, they do provide significant relief.

I have found that if I pace my activities during the day, I sleep better at night. When I am physically taxed and have overstepped my energy limits, I take lengthy naps during the day and have increased joint and muscle pain leading to increased difficulty falling asleep at night.

A high carb bedtime snack seems to help me fall asleep. While I probably should make a healthier choice than Cap'n Crunch, there is scientific evidence that suggests that eating a high glycemic index carbohydrate a few hours before bedtime shortens onset of sleep.

This may seem silly, and remember that we are talking about Weirdo Julia here.......but changing my bedside clock from a bright digital display to an old-fashioned wind up alarm clock helps my frame of mind when waking in the wee hours. Somehow, softly illuminated hour and minute hands are more calming to me than the time starkly stated in bright, specific numbers. Big Ben's glow-in-the-dark face is much more friendly, and I like listening to his soft tick tock. I can't read the exact time when I'm squinting without my glasses in the dark. That's a good thing.

I have stocked my nightstand drawer with a few essentials such as lip balm, eye drops, tissues, and I plunk a water bottle nearby. I also have learned that flannel nighties stick to flannel sheets. Not comfy. FYI.

A bedtime routine is also helpful to me. No, I'm not going to go into details here. You have to develop your own special routine that works for you.

Good luck finding Mr. Sandman - and nighty night.

You're A Shining Star

Image found here.

John and I attended an Earth Wind And Fire/ Chicago concert tonight, and what a trip down memory lane that was.

I first heard Chicago in concert in September of 1975. I was eighteen and a college freshman. My outfit consisted of a halter top, denim short shorts with a rainbow colored peace sign appliqued to my butt pocket, and a macrame beaded belt.

It was an outfit that I would never let my daughters wear.

Tonight, I wore capri pants and golf shirt, but I did allow myself to go wild with a pair of dangly earrings.

Woo.

The music was wonderful and both bands played all the tunes that I remember as my favorites. The remaining original band members still have pretty good chops for old guys.

The only distraction of the evening was provided by an annoying lady jiggling and dancing in front of me with her eyes half closed and a smug "damn, I'm hot," smile plastered on her face. Someone really should have told her, "Girl - things aren't shakin' like they used to....."

Mercy.

I knew that it would be prudent for me to conserve my energy and be content with geriatric sittercize type dancing but I just couldn't contain myself when Shining Star erupted. I leapt to my feet and sang and grooved right along with Annoying Lady.

Lord have mercy.

I left the concert tired and hoarse but nostalgically happy. I know that I'll pay for my shenanigans tomorrow, but sometimes you just have to dance.

Mugging For The Camera

As I was unloading the dishwasher today, it occurred to me that one could glean a great deal of information about someone from their collection of coffee cups.

What can I say? It's hot outdoors and I've been cooped up in the house for far too long...

At any rate, as I was stashing plates and saucers and cups away in my cupboard, I noticed as always that far too much space in my kitchen is dedicated to coffee cups. About every five years or so, I attempt to box some of them up and donate them, but somehow that box never makes its way to Goodwill.

Hm. I wonder what my collection says about our family?

I suppose that the absence of certain types of crockery is probably just as important as the types that do make it onto the cupboard shelf. I have no attachment whatsoever to those dinky little cups that come with a set of dishes. Remember those Corelle cups with the goofy handles? My dad loves them. I gave all of mine to him immediately after I bought this set of dishes. I found these on etsy.

Once my kids passed the danger age for breakable dishware, I ditched the Corelle and moved on to Ikea. That set, while still in use, has useless coffee cups too. We use them for small servings of ice cream or whatever, but for coffee? Good grief. Why waste time on a one-gulper size cup?

My favorite coffee mugs are generously sized and even when empty feel substantial. Most of them are enameled with various stuff, which is where the clues to the owner's personality show up.

I have the expected souvenir mugs from my favorite travels, like this one from a small hand-thrown pottery shop near my hometown:

The group of mugs that says a great deal about our finances - or more accurately, our lack of finances - is the one that contains various mugs from colleges to which we have paid tuition:

There are more of these from other institutions of higher learning, but they aren't clean at the moment. I may have to grudgingly admit that the fact that all my dishes are not clean simultaneously is probably also significant.

I have oodles of seasonal mugs.

....and the coffee cups in my china hutch hardly ever get used.

I used to own lots of mugs printed with drug names from those days long ago when I worked around medication manufacturer salespersons. My favorite was one that simply said: Thorazine. Why my favorite? Go look it up on webMD. I gave that one to my sister who is still hanging in there in her RN job.

So what can I deduce from scrutinizing my coffee mugs? Elementary, my dear Watson.

I have learned that I really, really need to get out more.

Sympathetic Survival

So there's this television program called, "Survivorman".

In the best interests of my waistline and diet, this is a program that I. must. quit. watching.

The programs always go something like this: Survivorman is dropped off in a remote location, like at the top of one of the Canadian Rocky Mountains, for example. He will be expected to survive for six or seven days with only the things that he carries on his person, usually things that wouldn't be considered useful for survival; his video camera, a light jacket, a harmonica, maybe one or two candy bars, something stupid like a car radiator, and nothing else.

The guy always survives, but also always ends up nearly starving to death, and nourishes himself with gross things like bugs and worms and stuff plucked from various bushes around him. Occasionally he will catch a fish or a bird, and eat it in the most digusting manner possible. As in raw.

When I watch this show, and we do watch it with some regularity, since it is intriguing to see how Survivorman masters the great outdoors, I always feel a mounting tension gripping me. What nasty stuff will he ingest this time? I feel my stomach rumble with sympathetic hunger, even if we have just finished dinner.

When he gets to the part where he's picking off bug legs before chomping down the bodies of the creepy crawlies, I find myself inching toward the kitchen.

As he laments the lack of food in his surroundings and describes vividly the resulting exhaustion and hunger pangs, my backside hangs out of the fridge or pantry as I shuffle stuff around, looking for a snack.

Last night, as the final credits were rolling, I was chowing down on a freshly-baked apple turnover. Mid show I had found an ancient box of the freezer pastries during my seek and shuffle phase and had them popped into the oven before Survivorman plucked his first bug leg.

Hang in there, Survivorman. I'll eat for you. Got it covered, big guy.

Approved Fatigue

Image found here.

I miss being authentically tired.

I miss being tired because I have put in a long, hard, physically active day. One in which perspiration dries to a salty layer on my skin, and is only removed by a steamy hot shower.

I miss having muscles that are sore after an exercise class, or a long uphill hike. I miss putting on my gloves and unloading hay bales from a wagon and grumbling because it's such dusty and scratchy work.

I miss jumping and running and dancing and doing all those things that leave one gasping for breath but giddy with laughter. I miss feeling bone tired yet confident that a good night's sleep will erase it all, and I will awaken the next day ready to tackle anything.

Autoimmune fatigue feels fake. It feels artificial, unnecessary and undeserved. One should have to legitimately earn this sensation of feeling so tired, and I haven't done a single thing that warrants even one drop of sweat on my forehead.

I don't deserve to be this tired, really, I don't.

I wonder what makes exhaustion legitimate?

I mean, what kind of exertion earns that gold foil stamped certificate of authenticity? Is it energy put forth for some kind of visible product? Is it sweating resulting in the appearance of toned and fit muscles? Is is made evident by that newly-mowed lawn and weed-free garden? Do shiny floors and gleaming polished furniture give legitimacy to someone's hard work? Or hours of labor resulting in stacks of freshly-printed, collated, copied, and stapled reports? How about a hundred shingles newly nailed in perfect, even rows? Or the person that hands over a dozen crisply ironed and spotless dress shirts?

I'd put my stamp of approval on an individual collapsed in a heap as a result of those exertions. Yessir, If I was in charge, I'd smack that person's forehead with a big old stamp that said, "THIS PERSON DESERVES TO BE TIRED". And I'd put a gold sticker on their chest, too.

Now, I know that my fatigue is real. I do have that knowledge tucked away in my brain. I have been told this by reputable people, and have read it in authentic medical sources.

But....

Knowing is different than understanding.

Road Trip

I was going through daughter withdrawal a few days ago, specifically for child number three who lives about six hours away from me.

So I stuffed some jammies in an overnight bag, hopped in Goldie, topped off her tank with gas, and headed East. Beautiful day, beautiful drive, very little traffic. I headed out into the Columbia River Gorge.

Then crossed the Bridge of the Gods.

I passed Mount Adams,

and Mount Hood,

drove through miles and miles of wheat fields,

then arrived in eastern Washington in an area known as the Palouse, where I finally got my hugs from my girlie.

I hope that I never take this amazing area for granted.

You can see additional gorgeous pictures and learn more about the beautiful state of Washington here, here, and here.

Time For Elastic Waistbands....

Image found here.

I have a hangover. No, not the kind from indulging in large amounts of alcohol.

I'm experiencing a sugar-butter-salt-calorie hangover. Our family and friends celebrated the Fourth of July starting on July first and didn't stop until this morning, when my son headed back home.

I don't know why, but it seems that I use any holiday imaginable to provide an excuse to eat snacks and treats that are calorie laden and bad bad bad for me.

There's the usual holidays: Christmas, New Year's, Memorial Day, Thanksgiving, Labor Day, Halloween, Easter and all the usual holiday goodies that accompany them....... but then there's also Take Your Kid To Work Day. I don't work and my kids actually all have jobs of their own, but hey - it still calls for cupcakes. And what about Secretaries' Day? I require a box of chocolates even though I never have and probably never will be a secretary or employ one.

Earth Day just screams for cute cutout sugar cookies frosted with green icing. Then along comes, well, um, Maggie the dog's birthday. I'm pretty sure she would want me to celebrate with a slice of cheesecake, since of course dogs can't eat chocolate.

The month of July alone has several mandatory celebratory opportunities including National Hot Dog Day, July 18th; National Gummy Worm Day, July 15th; National Ice Cream Day, July 19th; National Lollipop Day, July 20th; National Drive-Through Day, July 24th; and my favorite, National Milk Chocolate Day, July 28th.

It would be downright unpatriotic not to celebrate.

Want to see more silly yet delicious holidays? You can read more here.

T Cell Rehabilitation

Image found here.

I read this recent article from Medical News Today with interest. Love the title - "They Are Young And Need The Job".

The article discusses t-cells, white blood cells that originates in bone marrow, mature in the thymus, and are important because they are responsible for identifying, attacking, and destroying infectious agents such as bacteria and viruses. You can read more about these t-cells here.

On occasion, such as happens in autoimmune disease, t-cells mistakenly identify healthy normal tissue as an infectious or foreign agent, and signals the immune system to begin attacking the body's own healthy tissue. These misguided t-cells are then described as autoreactive.

The Medical News Today article discusses the ability of the body to re-educate young autoreactive t-cells.

Some of these autoreactive T-cells, however, undergo a kind of reeducation to become "regulatory T-cells" that keep other autoreactive T-cells under control. A group led by immunologist Professor Ludger Klein of LMU Munich has now shown that the developmental stage of an autoreactive T-cell is decisive to its ultimate destiny. Young autoreactive T cells are very readily reeducated into regulatory T-cells. Under identical conditions, however, older T cells become fully activated and can cause damage......... resistant to reeducation.

If I understand this correctly, it seems that the body has it's own rehabilitation program for juvenile delinquent t-cells, and that there is a window of opportunity for rehab which closes once the cells become older. The young t-cells that have been re-educated go on to assume responsibility for keeping other wayward youngsters under control.

Amazing.

So those of us with autoimmune disease are dealing with a crop of juvenile delinquent t-cells that have become older, hardened criminals and are chomping away at our own healthy tissue.

I'll bet there is some kind of larger social lesson for humanity to be learned here.