It Is What It Is

Cheer up, Sammy.

Wisdom to consider when I am in angst over my limitations:

Beware the barrenness of a busy life ~ Socrates

The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet, duties at your hand, the path of right just before you. Then do not grasp at the stars, but do life's plain, common work as it comes, certain that daily duties and daily bread are the sweetest things in life. ~ Robert Louis Stevenson

Gooey Goodness

"What would you like for dinner tonight?" John asked today. I told him that I wanted toasted marshmallows.

Really.

I just love love love a perfectly toasted melty sweet marshmallow just off the fire. Sigh.

Wonderful hubby that he is, within the hour I was perched in front of our fire pit, brand spankin' new marshmallow toasting fork in hand with my sugary supper in progress. John insisted on real food for his dinner, go figure.

If my entire meal is to consist of one item, I want it to be perfectly cooked. What's that, you say? How do you create the perfect toasted marshmallow?

My marshmallow method has been finely tuned over several years of intense research and development. Observe carefully, and you too can be a marshmallow maniac.

First, one must always choose the finest ingredients.

So I'm not going to name names here, people, but for heaven's sake - don't buy the old rubbery marshmallows that have been sitting in some warehouse so long that the entire bag is one big sticky blob. Spring for the genuine marshmallow item.

Second, make sure that safety essentials are close at hand.

Next, prepare the fire. Choose wood that hasn't been treated with chemicals, is dry, and don't add goofy stuff like plastic bags or pop cans or other weird things to the fire. Plastic coated marshmallows are not good for you. They may even cause autoimmune disease, or something.

It's important to accurately assess a fire's readiness to roast said marshmallow. The above fire is mostly flames. Not good for toasting. Patience, grasshopper.......These coals are perfect.

Nestle the raw marshmallows near the glowing embers of the fire. Note this perfectly placed fork:

Now comes the part where an expert eye and sense of timing comes in to play. Pay attention, folks - if the marshmallow begins to puff slightly and begins to just barely smoke - it's time to turn it. If you let your attention wander, you may end up with sad crunchy chunks of charcoal. I know - there are those who claim to enjoy burned marshmallows, but I simply don't believe them. They just haven't perfected their technique.

Remember: Friends don't let friends eat burned marshmallows. Oh, the tragedy of it all.....I can't bear to look.

Now here is an example of toasted perfection:

Ready to stuff that beauty in your mouth? Not so fast, buster. A true marshmallow gourmet knows that one gently slides the marshmallow off the fork.

Note that the fingers remain below the marshmallow. Only an amateur grabs the middle creating premature smooshing.

Aaaaaah. Pop that golden brown toasty treat in your mouth and savor.

Repeat repeatedly.

Cheers!

Remember that old television show, Cheers? My favorite part was always when one of the regulars would arrive in the bar while everyone shouted, "Norm!". He'd grunt and give a perfunctory wave or make a pithy comment and plop onto his bar stool just as Sam sent his mug of beer sliding down the bar.

Call me weird, but it cracked me up every time.

Well, alert the media. Today I had my first Norm experience.

Our local convenience store, just five minutes from my house, sells a soda card. When you buy it, it is redeemable for several fountain drinks at a big discount, plus free refills if you use their original cavernous plastic cup.

You may recall that last year, I vowed that I would have a soda free summer. I failed miserably. This year I am attempting to have a sugar soda free summer. Diet soda doesn't count. Wish me luck.

So today as I breezed into the station for my diet Coke, the gal behind the cash register greeted me with, "Julia!" as I filled my cup with fizzy stuff. Oh yeah. We're on a first-name basis now. Feels good.

I need to develop a repertoire of pithy comments.

We're Even

Greg and Terese arrived at my birthday party with this beautiful hydrangea.

I promise not to whine about the chain saw incident ever again.

Only The After Photo

I felt adventurous this morning, so whipped up a batch of Pioneer Woman's recipe for huevos rancheros, found here .

My goodness. Yummy.

Her site is beautifully written and photographed. If you visit her site, her photograph of this dish is gorgeous - eggs and cheese melting onto a cobalt blue platter.

But at my house, this is what remains of her recipe.

I Am What I Am

I know that I have written a great deal about the changes my life has taken since becoming disabled, but I still pause before typing the D word, and think - really? Me?

Yes, me. After reading about and interacting with other disabled people, I am slowly understanding that while my experience with disability unfolds itself in new and different ways each day for me, countless others have and are going through the same process. I am not unique. I am not special. My disability is not rare or exceptional. It just is what it is - a change in my abilities.

Like most people, I tend to compare myself to others as I move through various stages in my life. As a teenager, it was clothes and hair and boyfriends and....well, everyone knows what that stage is like. As a young mom, I gauged my success by comparing my parenting skills to other young families and the escapades of their kids vs my hooligans. Which is another very long discussion. In my professional life, even though my goals as a nurse centered on giving good care, I still wanted to know that I could be the go-to person with a valuable skill set, be it documentation or education or technical skills.

I didn't consider this need to compare as competitive, but rather just a way to measure my worth and value in my place of employment, in my home as a mother, and in my marriage as a wife.

Along comes a disability. After dealing with the physical and emotional changes and life settles into some kind of routine, I find myself yet again looking for that measuring tape. How do I compare to others with a disability? Am I doing this better, the same, or worse than others?

After six years, I have come to the understanding that I am a slow learner, but what I have finally realized is this:

There isn't a play group where you can watch other disabled people's social and developmental abilities. There isn't a spot in the mall where the disabled hang out and eat junk food and compare notes and crack jokes. There is no standardized test to evaluate your disability skills. You can't earn a certificate or degree in this.

You can't be the best at being disabled. You can't be the worst, either.

You just have to ............. be.

Dad's Day

Dad on his John Deere

Sorry, guys, this bug - whatever it is - really has me whipped. I have graduated from NyQuil to Zithromax and Sudafed.

But I don't want it let me keep me from posting about Father's day tomorrow. Whenever one of my kids have a difficult task ahead of them, I always whip out the Grampa S., my dad's, speech. They know it. They love it. They've heard it a zillion times, but it's a goodie.

It goes something along these lines:

Nobody in the whole world is better than you are. Nobody.

Everybody puts their pants on one leg at a time.

Decide what you want to be, then go be the best there is, no matter what you choose. If you want to be a street sweeper, then be the best street sweeper.

Go after it like you're killing snakes!

And my personal favorite -

Give 'em hell!

Happy Father's Day to all those great dads out there.

Update

Still sucking down Nyquil, and now antibiotics.

See you when the fog clears.

Sniffles and Sjogren's

Image found here.

I feel I must explain my rather loopy sentence structure. I have taken my first full dose of NyQuil for the first time in six years.

Woo hoo. I really live on the edge, people, when I get my thrills from antihistamines. Or whatever is in this stuff. Tastes like crap but makes Julia not care about her rhinovirus.

So what happens when you get a wham bam awful cold and have Sjogren's syndrome?

I have been diagnosed with Sjogren's for six - count 'em - six years, and I have to say that this is the nastiest upper respiratory mucosal viral infection that I have had in six years. Must be swine flu......ooooo....I drank that humungo milk shake tonight.....maybe piggie flu.

Well, for whatever reason, this particular virus is problematic. I feel as though my nose should be running, but it isn't. I feel as though my eyes should be tearing up as I cough, but they aren't. When I sneeze and cough, my nose and chest feel irritated and dry. I have a tissue at the ready but there isn't any gross secretions to put in it. And yet - I still have all the same irritating achey coughing yukky cold symptoms.

How totally weird. Maybe not totally bad. Hm.

Time to put on my fuzzy jammies and head to beddy bye.....

ps. - yes, I know that over the counter cold medications will make my mouth and eyes feel more dry. I don't care. So there.

Tractor Memories

Fifth annual "Drive Your Tractor To Work Day"!

Where was this when I was in high school?

I would totally have been there with my dad's John Deere A, sans cab. Only sissies drive tractors with cabs. (Julia dodges tomatoes and rotten fruit being thrown).

When I was a kid, my dad made a deal with all six of his kids. If we worked for him on our 250 plus acre dairy/beef farm, he would pay for all of our college expenses. Bless his heart. My siblings and I baled hay, hauled feed wagons, cleaned barns and calf pens, milked cows, fed calves, shoveled silage, and, well, you get the idea. My favorite chore was to take the off road motorcycle and check fence lines.

Actually, it was a great way to grow up.

When I announced that I was going to choose nursing as a career, Dad was somewhat skeptical. He thought nursing was a fine career choice, he just didn't see me wielding hypodermic needles and remaining conscious. To prove my nurse-worthiness, he asked me to immunize that year's crop of calves. Which I did. And the rest is history.....

Summer Lights

Like my fireflies in a jar?

Wait, wait - don't overreact here. They're battery powered.

How cool is that?

Thanks to Cheryl for this summertime gift.

Sjogren's and Peripheral Neuropathy

Sammy tries to help tame my tootsies. Such a good doggie.

Man, I just hate it when it happens.

I settle into bed and want desperately to just konk out for the night, bone tired. Then it starts - those description defying sensations in my legs. I try to ignore them, then try to distract myself by reading or thinking of some gorgeous place to vacation, but to no avail.

Inevitably I end up pacing around the house, since walking around eases the bizarre creepy crawly tingly symptoms, which only makes me more fatigued the next day, which increases the likelihood that the next night will bring a return of the creepy crawlies.

Clomping around the house doesn't ease the burning and aching in my feet, either. At three o'clock AM, I am ready to collar poor Dr. S. and demand some magical relief. What what what is causing this??

Lucky for Dr. S., I wait to pose this question until my next appointment. She doesn't even know how many times she has narrowly avoided becoming seriously inconvenienced by my irrational moments. But since she's been my lifeline in dealing with Sjogren's, I try to be really really nice to her. So far.

After a referral to my neuro, I get the news that my symptoms are a result of peripheral neuropathy, and dutifully add another pill to my stack of daily medications.

What the heck? Just when I think that I have my body's response to autoimmune disease figured out, I get a reality check that reminds me of the body-wide effects of Sjogren's syndrome.

Which lead me on another quest for information, this time about the neuropathies associated with Sjogren's syndrome. Here's a brief overview of what I learned.

I had some basic understanding that this condition had some relationship with my body's nervous system, which basically consists of the brain, the spinal cord, and nerves. The central nervous system, the major players in this system, includes the brain and spinal cord. The nerves which connect the skin, joints, muscles, and internal organs are not considered part of the central nervous system, but are categorized as peripheral nerves. These nerves are responsible for communications with the spinal cord and brain. You can read more about the nervous system anatomy and physiology here.

Image found here.

When the peripheral nervous system isn't functioning correctly, the result is peripheral neuropathy. In my case, that translates to painful burning sensations in my feet and numbness and tingling in my left hand. The National Institutes of Health describes other potential symptoms here:

Because every peripheral nerve has a highly specialized function in a specific part of the body, a wide array of symptoms can occur when nerves are damaged. Some people may experience temporary numbness, tingling, and pricking sensations (paresthesia), sensitivity to touch, or muscle weakness. Others may suffer more extreme symptoms, including burning pain (especially at night), muscle wasting, paralysis, or organ or gland dysfunction. People may become unable to digest food easily, maintain safe levels of blood pressure, sweat normally, or experience normal sexual function. In the most extreme cases, breathing may become difficult or organ failure may occur.

The Medscape clinical reference site contains a very in-depth article about Sjogren's syndrome, and in it, cites this rather surprising incidence of peripheral neuropathy:

Sensory, motor, or sensorimotor peripheral neuropathy, often subclinical, can be detected in up to 55% of unselected patients with Sjögren syndrome.³⁰ Symptoms of distal paresthesias may be present.

A diagnosis of PN is made after a careful and through evaluation by a neurologist, since Sjogren's syndrome is only one of a myriad of conditions which can result in peripheral neuropathy, some of which include: diabetes, vitamin deficiencies, malabsorptive intestinal disease, alcoholism, infection, some cancers and chemotherapy agents, renal failure, untreated thyroid disease,heavy metal toxicity, toxicity resulting from chemical and industrial agents, entrapment syndromes such as carpal tunnel syndrome, and other autoimmune diseases. (Source: Peripheral Neuropathy - when the numbness, weakness, and pain won't stop by Norman Latov, MD, PhD. pp. 17 - 71.)

Treatment options are directly related to the cause of the neuropathy. Obviously, PN related to autoimmune activity will be treated much differently than the neuropathies that are related to the use of chemotherapeutic agents, for example. Treatment of PN begins with careful management of the underlying disease.

Since my rheumatologist keeps careful tabs on my disease activity and I am currently being treated with disease-modifying agents, my treatment will include the use of symptom-reducing drugs. The list of such drugs is extensive, so for information regarding the use of these medications consult your physician.

You can read more about peripheral neuropathy, diagnosis, and treatment here.

Hydrangeas and Autoimmunity

Image from wikimedia commons.

Thanks to Kim for sharing this interesting item:

A substance found in hydrangea root, halofuginone, may provide yet another tool in the fight against autoimmune disease.

Dr Anjana Rao, of the Children's Hospital in Boston in the U.S., said: 'Halofuginone may herald a revolution in the treatment of certain types of auto-immune and inflammatory diseases.'

Read on here.

I would be tempted to brew myself some hydrangea root tea from my very own hydrangea plant were it not for the fact that my hydrangea bush is not healthy.

Why? Got a little extra time? Let me share yet another John and Greg story.

Hubby John and his friend Greg, buddies for 13 years, love a project. Usually these projects involve heavy equipment or large bonfires, and are followed by some sort of adult beverage. If the adult beverages were involved during these projects, I strongly suspect that one or even both of these guys would not still be alive.

A recent project required a chain saw. And Greg's large pickup truck. And a big tree in my back yard.

After spending some serious time in prayer, I watched with relief as they cut down and hauled the tree away successfully with all limbs intact, both tree and lumberjack wannabe's.

John and Greg high-fived and surveyed their work with pride. Then, with chain saw still in hand, began to appraise the remaining vegetation in the yard.

I had a sinking feeling that this would not end well. I was right.

Panic stricken, I ran for my shoes and the back door but was too late to save my giant hydrangea bush from a chain saw pruning.

The guys looked at me with disbelief when I protested. They informed me that this would be beneficial to my plant. I threatened them that I would prune various parts of them if they did not cease and desist, so they retreated to Greg's truck while commiserating about my lack of gratitude for all their hard work.

Which explains why my poor straggly and struggling hydrangea plant wouldn't appreciate sharing one of its roots for my tea.

I think I need to pray harder. For what I'm not sure.

Optimism or Delusion?

Every night Maggie hops up onto our bed, confident that she will be allowed to sleep on my pillow for the night. And every night, I scoop her up and toss her in her kennel at the foot of our bed. 

This little scene is replayed every single night. Yet she still keeps trying to wrangle her way into our bed, certain that some night she will win the right to hog all the blankets and pillows for an entire evening. 

Sorry, girl, it just isn't going to happen. 

Is this the definition of optimism? Or is it an example of delusional thinking? 

I wonder how to define that line of reasoning whenever I think about living with a chronic illness. Whenever I read a study about the next greatest cure-all medication, or hear again that weight loss being a panacea for any and all ills, or see an advertisement that promises a return to youthful health if one buys an herbal concoction; I feel this same kind of hope that Maggie demonstrates every night. After a few minutes of thought I have to tell myself: Sorry Julia, it just isn't going to happen. 

But still, Maggie and I just keep hopping up on that pillow. Is it optimism or delusion? 

Therapeutic Shopping

Image found here. 

On occasion, John comes home from work to find me completely exhausted. He'll ask sympathetically, "What made you so tired, hon?"

His sympathy completely evaporates if I respond by telling him that I spent an afternoon shopping. He isn't irritated that I spent money, although he probably should be. He isn't frustrated that I spent my time shopping when I should have been doing something more productive. 

No, John just can't comprehend why I would expend precious energy doing something that he considers to be as enjoyable as having a root canal. He just doesn't get it. I suppose this might be a typical male response. 

I, however, view shopping as a delightful pastime. I haven't always found shopping to be this much fun, but since my daily environment became considerably more limited, it fills lots of my recreation needs. 

I love to dawdle, and a store is a perfect place to perfect dawdling skills, with the exception of the check out lane, of course. I can make my way leisurely through the aisles, looking and this and that, and can rest while sipping a coffee or soda if needed. Even though I may occasionally misjudge my energy abilities for the day and thus end up collapsed on the sofa, for the most part shopping is an activity which allows me to participate completely at my own pace. 

There's an aspect to shopping that didn't appear until after Sjogren's fatigue made it's appearance. Before I became disabled, I didn't give a rats patootie what other shoppers thought of me. I was just another woman out there in the mall, and except on incredibly bad hair days, blended into the crowd. I relish that feeling nowadays. I am acutely aware of being just another shopper in the mob. Anonymous. No one out there needs to know anything about my limitations or abilities.

Shopping provides an opportunity to complete a quest. Friend's birthday? New baby? Wedding? Graduation? Woo hoo - a shopping challenge. I have time to find the perfect item. My gifts have become increasingly thoughtful over the past few years. At least I like to think so. 

What? You didn't like the lederhosen t-shirt, Greg? The rest of us thought it was the perfect gift.