Ode to a Shopping Cart

The opening bell of the Christmas shopping season has rung and we're off to find the best bargains in town! I thought I'd re-post one of my earlier entries that seems especially appropriate: 

I was reading a great thread today over at Sjogren's World Forums. 

The conversation started about fatigue and ended by singing the praises of that unappreciated piece of hardware sitting in the the foyer of every grocery store. Grinning, I realized that the discussion was right on the money. 

Before I had Sjogren's, I never gave the carts a second thought. Maybe I glanced to see if they were wet with rain, or had shrapnel such as donut papers or empty juice boxes remaining from one of the earlier kiddy passengers. I just grabbed a cart and went about my shopping. 

Who knew that at some point I would look at those klunky metal contraptions as an energy and pride saving device? 

Nowadays, a shopping cart in hand ensures that I will be able to actually enjoy shopping again. I toss all my accompanying belongings into it. The handle is just the right height to lean on to save small bits of energy. If I begin to perspire when energy levels get low, I start peeling items of clothing off and toss them in too. 

Most days, I make it through the cashier line somewhat clothed. Usually.

According to About.com, the modern shopping cart was invented by Standard/Piggly-Wiggly  owner, Sylvan Goldman in 1936. He attached two wire baskets and a set of wheels to a folding chair. 

Way to go, Sylvan. You the man. 

Anti - Inflammatory Thanksgiving

Image by gravityx9

Thursday's Thanksgiving feast is almost here. I'm looking forward to getting together with family and friends. 

Daughters and I are planning the Thanksgiving extravaganza meal. Of course there will be the usual list of suspects: turkey, potatoes and gravy, stuffing, and pumpkin pie. And, of course, we will all consume far too many calories in one sitting than anyone could possibly need. In spite of the increased calories, I have been thinking about ways to add some beneficial aspects to this meal by including foods that have anti-inflammatory properties, at least according to Jack Challum and the Dlife diabetes site. 

His article lists many foods which may help decrease inflammatory response, a very helpful thing in fighting autoimmune disease. Among the foods listed were: garlic, cruciferous vegetables such as broccoli and cauliflower, ginger, olive oil, and deep green leafy salad vegetables, all of which should be very easy to include in the menu. 

Salads with olive oil dressing plus deep green leafy veggies, broccoli and cauliflower? Check. Ginger in the pumpkin pie? Check. Garlic in the gravy stock? Check again. I can do that. 

Turkey Trophy

Image by neonerd911

Every year, at our Thanksgiving dinner, I try to think of some type of activity that will require all of us to actually stand up and move around after stuffing ourselves with stuffing. And turkey, and pie and ......well, you know. 

This year, we are going to have a contest in which the winner gets to take home a spectacular prize - a Traveling Turkey Trophy. Which means that if I can convince everyone next year to participate again, the trophy will be awarded to someone else. The contest is this: to see who has the best dead-eye aim in hitting a target using either a Native American style weapon (a bow and foam-tipped arrow) or a Pilgrim-style musket (actually a small Nerf gun that shoots foam balls). If anyone knows where I can obtain cheapo plastic muskets that actually shoot something non-fatal, please let me know for next year. 

I'm sure that this contest will involve a great deal of debate over who actually was the most accurate, some discussion over the rules, and whether or not anyone cheated. Watch out guys - I'll be watching you all! 

The Culprit

Wanted: For Gingerbread Nibbling

You remember the old saying, Pride goeth before a fall? I should have remembered that adage before making my last post bragging about my gingerbread church. 

Today, as I was futzing around with fondant shingles, royal icing, and fake fir trees, I saw with horror that someone - or something - had been EATING my church roof. Yessir. A chomp right out of the roof. 

It had to be Fat Louie, our cat. The dogs never got anywhere near the church, and Louie is has no sense of decency whatsoever about traipsing around on the top of my tables and countertops if he thinks I'm not looking. I just know he's the guilty party, and he doesn't even have the common sense to look the least bit repentant. 

It's fixable - a little icing, a little fondant, nobody will be the wiser after I shingle over the chomped part. But Fat Louie and I will know. 

And watch out, Louie, I'm holding a grudge. 

Constructive - Not Construction - Criticism Allowed

In my Before--Sjogren's life, my friend Dianne and I used to make oodles and oodles of small gingerbread houses and sold them at craft sales. We called ourselves "OH Gingerbread". Wasn't that clever?  We sold literally hundreds of them, and one year I gave my kitchen a makeover with my share of the profits. And worked, and kept tabs on three little kids, and....ahhh.....those were the days. 

For the last several years, I have delegated the gingerbread house duties to my daughters, who collaborate to make just one perfect house each Christmas. This year, however, I decided to be brave and dive back into the gingerbread bowl. I am making a replica of my friend's church, and want to be clear - THIS IS A WORK IN PROGRESS. I have not placed the shingles on the roof or finished the landscaping. The steeple and the shingles are giving me a particularly difficult time. How on earth do construction guys shingle strange roof lines???  

The only non-edible parts of the church are the figurines, the trees, and the stained glass windows. The rest is munch-able, if you aren't afraid to break a tooth in the process.  

Working on this project has been a learning experience for me on multiple levels. 

First, and foremost, I have a new respect for those people who can turn out the elaborate, multilevel, REAL gingerbread houses. 

Second: Dang! How do you shingle into a corner?? I salute you, roofers of the real world. 

Third: When I started this project, I expected to complete it according to my pre-autoimmune abilities and schedule. Meaning, I thought I could knock it out in a weekend. Wrong. I work on bits and pieces of the project as energy allows, and interestingly, I have enjoyed working on this church more than any of my other previous gingerbread endeavors. In deliberately approaching this task at a slower pace, it's surprisingly gratifying to complete it one step at a time. To step back, coffee mug in hand, and give it a critical look, to tweak this, and add that. To have a less frantic lifestyle that allows me to take as much time as I want. Of course, this doesn't guarantee that it will turn out perfectly - none of my creations do. But I'm having fun.

 I guess that's what it's all about. 

The Dark Side of Television

Image by lilie

After reading this study , I may point myself away from the television when I'm crashing on the couch. It's always a challenge to spend time productively while I'm resting, and I have to confess that grabbing the remote is one of the first things I do once my butt hits the cushions. Data from this study makes me re-think hitting the "on" button:

The University of Maryland analyzed 34 years of data collected from more than 45,000 participants and found that watching TV might make you feel good in the short term but is more likely to lead to overall unhappiness. 

"The pattern for daily TV use is particularly dramatic, with 'not happy' people estimating over 30% more TV hours per day than 'very happy' people," the study says. "Television viewing is a pleasurable enough activity with no lasting benefit, and it pushes aside time spent in other activities -- ones that might be less immediately pleasurable, but that would provide long-term benefits in one’s condition. In other words, TV does cause people to be less happy."

I guess this means I need to get serious about developing productive activities that can be completed while horizontal. (And I want each and every one of you to get your mind out of the gutter. For shame.) 

Obviously, I could choose to spend more time on my laptop, but I max out on my daily allowance of ICanHasCheezburger or CuteOverload  pretty quickly. And after I've checked out the Drudge Report and UpsidedownDogs, then spend a few minutes researching a few things that might be useful for Reasonably Well, my tear supply is usually shot. I wonder why looking at a TV screen seems to be less drying to my eyes than does working on the computer or reading? 

I think that activities that provide long term benefits and don't sap energy and can be completed while lying down and don't deplete my tear supply are rather hard to come by. 

It may come to this - that while resting, I should actually rest. A novel concept. 

Doc Gurley

Image by ZoofyTheJi

I love Doc Gurley's blog. Dr. Jan Gurley writes an amazingly informative yet entertaining site regarding all things medical. She describes herself this way:

Doc Gurley is a Board-certified Internist physician and the only Harvard Medical School graduate to have been awarded a Shoney’s Ten-Step Pin for documented excellence in waitressing.

She has written a post about cold-weather dryness, and while much of the information is geared toward skin disorders such as eczema, other suggestions are good non-pharmaceutical advice for those of us with autoimmune-related dryness. The post is titled 5 Tips to Avoid Seasonal Scratchiness. Here are her five tips - but by all means, go to her site to read the explanations behind her provocative suggestions:

• Join the Pits and Crotch (and Feet) club.
• Oil Up
• Dry Eyes
• Ingest Well
• Humidify

Pity Party Crashers

Image found here. 

I loved this from Dalton Roberts quoting his friend Naomi:

"My semi-annual pity bash began without a hitch. Stunning in a sackcloth gown, I sprinkled ashes in my wake, mixed hot tears with lemon rind to keep the wounds alive, and rolled my pain in salt … But unexpected visitors arrived and spoiled my plans. One showed up with flowers that brightened my décor, another ran an errand that spared me time and grief … Another pity party flop, hijacked by my friends."

Isn't that a marvelous description of what happens to us when we sit patting out our melancholy mud pies and a much-loved friend shows up? We are really energy beings and the energy field of a friend can often neutralize all the negative stuff in our own energy field. "Neutralize" is really too weak a word to describe how powerful it can be at times. It can be as powerful as a Roman candle moving through all the dark corners of our being spreading sparkles.

I enjoyed his description of patting out melancholy mud pies, and a Roman candle spreading sparkles. I am lucky to have sparkly friends. Thanks, guys. 

The Club

Image by  melodi2

Can you picture this? 

You are a tired, thirsty traveler on a hot desert night in an arid city. As you explore a deserted alley, you see a worn wooden door lit by a lone bare light bulb dangling overhead.  You knock on the door, and it opens just a crack. You can hear lively music, sounds of ice cubes clinking in glasses, and laughter. You really, really want to join the party inside. The doorwoman examines you critically. 

"How do I know that you're one of us?"

Every time I see the data showing the number of people with Sjogren's Syndrome and realize how many of us are out there, when I am in a group of people, I wonder: How many others in this room have autoimmune disease? 

We Sjoggies need a way to identify ourselves to each other without broadcasting our health problems to the world. What do you think? Maybe a special Sjogren's handshake that symbolizes our strength, resilience, and solidarity? 

How about one similar to the www.juniorsociety.com/ contact/?

The diagram above may be a secret handshake for kids, but it would be too difficult for me. Even on non--brain fog days. Hm. 

This one is just ewww. Besides, I don't think that I can bend over that far. (Good flexibility, though, Homer.)

Maybe we could pretend to spit on one hand, and since most Sjoggies don't make spit, when we offer the hand to shake, another Sjoggie wouldn't have any reservations about accepting it. I'm not sure what a non-Sjoggie would do, however...

OK. How about this. We could pantomime putting in eye-drops, then twist off an imaginary water bottle cap? 

I'm running out of creative ideas. I think this issue should be placed on the next Sjogren's Syndrome Foundation board meeting. 

To Tell The Truth....

Image found here. 

I have noticed that I am tempted to play the "fatigue" card more than usual lately.

Yesterday, John commented that the coffee in his travel mug tasted strange. Daughter number two tasted it and agreed with him. Then it occurred to me that while doing dishes the night before, I had just a few things left that I didn't want to put in the dishwasher. So I ran some water into the sink, and blopped a few squirts of antibacterial hand soap in the water instead of reaching down under the sink and hauling out the actual liquid dish soap. I guess John didn't like the taste of Dial in his coffee. Go figure.

Or this beauty - asking John to pick up dinner on his way home from work, gosh I'm just too tired to make anything, when in fact I am waaaay too comfy on the couch to make my way to the kitchen.

Then there's those funny little lumps under the edges of my area rugs, which are actually leftovers that I missed while vacuuming. Nobody will notice a little cat fur under the rug, will they? 

I have to confess that I am really tempted give the "I'm so tired" excuse when actually I just don't want to do whatever I am supposed to do. Sometimes my conscience wins out, sometimes the lazybutt Julia side of me wins. 

After feeling guilty about this realization, and mulling it over for a few minutes, I realized that an excuse is an excuse is an excuse. In my BS life, (before Sjogren's) my excuses used to be based on my frantically busy life. I can't get to that dentist appointment, I simply don't have time; or Wash the dog? You've got to be kidding, I don't have time for that, or my favorite Let's order a pizza for dinner, I just didn't have time to make anything. 

I am who I am, regardless of what my naughty white blood cells are doing, I guess. It all boils down to motivation, regardless of what the circumstances are. My limitations previously were dictated by the number of hours in a day. Now my limitations are defined by how honestly I am assessing my energy reserves. I would love a gauge or dial or some other visual measuring device placed prominently on some part of my body, (OK, this is conjuring up some really disturbing images, let me refine that), like on the palm of my hand, or on my forearm. That way, I could compare my laziness levels against my actual energy available. 

Or not. I have a sneaking suspicion  that I really don't want to know. 

Autumn Autoimmunity

Image by  davdibiase

A comment by Maria, over at My Life Works Today!, made me think. Yes, for me, thinking is a rare occurrence, I admit. She was listing things that made her happy, and included autumn in that list, citing the colors, the cool temps, and the impending holidays that all lifted her spirits. 

Over the past month, I have noticed how much better I feel. I seem to have more energy and find myself bustling around getting out Thanksgiving decoration and planning holiday meals. Maria is right - fall is a happy time. 

Without summertime heat, I can tolerate being outdoors almost indefinitely. I love bundling up in a sweater, making a pot of coffee, and watching the rain clouds move through the Cascade mountains. Before long, Silver Star peak will have it's first snowfall. I have brought out the crock pot and am making homemade soups more often. Daughter number two has been paging through the Christmas cookie recipe books. John has dragged out the box of Christmas lights and has begun untangling, replacing bulbs, and imagining this year's configuration of lights. I have put in a request for John to illuminate my little greenhouse this year. I plan to hang some silk poinsettias inside, and with white twinkle lights, I think it would be a pretty thing to look at on dark winter nights. 

While my energy seems to have rebounded, during the cooler months other of my Sjogren's symptoms seem to worsen. There's the expected increase in dry eyes and skin once the furnace begins to kick in more often. John swears my snoring increases by at least three decibels in the wintertime, probably because the drier heated air takes away more moisture from my mouth and throat. I'm going to put a cool mist humidifier in our bedroom this year. 

My already crummy sense of smell seems to diminish even more once November rolls around. I'm not sure why this happens, but I have to be sure to have a surrogate sniffer around when I choose scented candles for our house or air fresheners, since my ability to discern pleasing aromas from really yucko ones completely goes away. 

I like to blame any weight that I gain on the fall and winter season. This excuse works really well for me, what with the onset of Halloween candy followed closely by pumpkin pie then Christmas cookies. Any remnants of self-control nurtured during the summer months disappear as soon as the cooler temperatures arrive. Of course, this must be related to Sjogren's syndrome. I am sure that I read a study somewhere that linked autoimmune disease with increased production of adipose tissue during the winter months. I'm sure of it, and if there isn't such a study, I think the NIH should get right on it. 

Come to think of it, isn't there a study somewhere linking grey hair, plantar warts, bunions, overgrown eyebrows, ugly toenails, and bellybutton lint  to autoimmune disease? 

I Like This National Holiday

Image by woodsy

A friend sent me a very humorous forward, declaring that today is National Men Make Dinner Day. It's too good not to share, although I am not sure how to cite its origins. Even The Chicago Manual of Style doesn't give me direction on this one. So I am going out on a cite-less limb to share this with you:  

Top 10 reasons to participate in National Men Make Dinner Day:
 
10. While cooking, you can still wear your tool belt; simply replace the hammer with a whisk.
9. Several recipes include beer as a legitimate ingredient.
8. The blender, the electric mixer, and the food processor are loud enough to drown out anyone in the house who is learning a musical instrument.  
7. Whoever is cooking always gets the most attention from the dog.
6. Whatever recipe you choose, you can name it after yourself.  Example: tonight’s dinner is called “Doug’s Surprise.”
5. Discovering that “250 ml” is the same as “8 ounces” AND “1 cup” is half the fun.
4. Since YOU choose the recipe, it can be a turnip-free night.
3. Some desserts, such as crème brulee, require the use of a propane torch.  How cool is that?
2. Since other husbands in your neighborhood are also cooking dinner, this, ironically, could be the ultimate male-bonding experience.
1. Participating in National Men Make Dinner Day gives you optimum points with your wife.  Use them wisely!
 
Other hints for today:  serving the following items does not count as “making dinner”:
 
Chewing gum
Take-out pizza
Cotton candy
Anything grilled (I told you)
Leftovers
 
Good luck, Gentlemen—may your dinner be edible and free of food-poisoning.

What a valuable resource in fatigue management! I may take a rain check on this dinner for one of my crash and burn days. 

Thank You!

Thank you to Maria, who authors My Life Works Today!, a site dedicated to helping those with Lupus and Lupus-related conditions. Her mission statement: 

Our mission is to inspire individuals who are living with all forms of lupus and lupus-related illnesses by being a strong resource of opportunities reflecting the potential and well-being of our Oregon and SW Washington communities.

MLWT awarded the Kreativ Blogger award to six blogs, among them Reasonably Well. Head over to her site to find links to the other blogs as well as some great resources. 

Healthcare Politics

Image by bshafer

Politics. Debates. Conventions. Balloting. And finally, the election. 

I am glad that it's over. 

I won't comment on who I voted for, since my focus for Reasonably Well is not political. I will say that I had significant reservations about ideologies on both sides of the ballot. However, since it now appears that Barak Obama will be our next president, it seems that a review of the Obama/Biden stand on healthcare is in order. 

This from the Obama website:

The Obama-Biden plan provides affordable, accessible health care for all Americans, builds on the existing health care system, and uses existing providers, doctors and plans to implement the plan. Under the Obama-Biden plan, patients will be able to make health care decisions with their doctors, instead of being blocked by insurance company bureaucrats.

Under the plan, if you like your current health insurance, nothing changes, except your costs will go down by as much as $2,500 per year.

If you don’t have health insurance, you will have a choice of new, affordable health insurance options.

I agree that change is needed in our health care here in the United States. It is simply unacceptable and unethical that healthcare is unaffordable for many. Families forced to make the choice between housing and food versus health insurance are put into an impossibly unfair place. It is inconceivable that families are forced into bankruptcy due to massive medical bills even when they do have healthcare insurance, yet this is not an uncommon occurrence.  

While I agree wholeheartedly with those who advocate for critical changes in the healthcare delivery system, forgive me if I am less than optimistic about it happening any time soon. Anyone who has dealt with the maze of insurance companies, drug companies, hospital, and outpatient clinic billing systems realizes that fixing this  issue is complicated on an unbelievable scale. Even beyond mere reimbursement issues, the legalities of healthcare as a whole heap yet another mountain of difficult issues onto an already enormous pile of problems.  

During the Clinton administration, similar promises were made as early as 1993. This quote from President Clinton's speech to a joint session of Congress made on September 22, 1993 was a plea for action on the health care front: 

Millions of Americans are just a pink slip away from losing their health insurance, and one serious illness away from losing all their savings. Millions more are locked into the jobs they have now just because they or someone in their family has once been sick and they have what is called the preexisting condition. And on any given day, over 37 million Americans -- most of them working people and their little children -- have no health insurance at all. And in spite of all this, our medical bills are growing at over twice the rate of inflation, and the United States spends over a third more of its income on health care than any other nation on Earth.

Sound familiar? 

We can only hope and pray that the rhetoric offered by the Obama campaign materializes into concrete action. And soon. 

Fatigue Mind Games

Image by BrachAnam9

I've read it on other web sites, other blogs, other discussion forums - the fatigue that accompanies some autoimmune diseases is the most life-changing of all symptoms. At least it feels that way. My energy reserves dictate exactly how my day will play out. 

I have read in various places that a good rule of thumb for those with fatigue issues is to allow three minutes of rest per each minute of moderate to vigorous activity, and I have begun to experiment with this recently. 

So far, in my very unscientific and biased experiences, this strategy seems to be somewhat successful. In my journeys around the midwest last week, I made a conscious effort to schedule rest periods after planned activities. This meant that I had to opt out of participating in a few events, but the absence of crash and burn sessions was worth it. Instead of drinking enormous amounts of high caffeine drinks and then faking higher energy levels and collapsing a day later, I didn't try to hide my need for rest and pacing. When I ran out of energy, I just rested. Period. And what was great is that nobody along the way seemed to think anything about it at all. I have always worried that others will think me a wimp or look at me as if I've grown three heads when I disappear from a gathering to rest. Silly me. Others told me that they were glad to see me taking care of myself. 

Pacing and rest and structure are not new concepts in fatigue management. I could find a zillion references to cite, but honestly people, and trust me on this one, these strategies will show up on the simplest of google searches. 

What is surprising to me is that in spite of knowing these strategies, writing about these strategies, and reading about these strategies, when I actually put these strategies into place, they work! Mostly. The underlying physiological reason for the fatigue still exists, of course. 

So after some type of exertion, which for me may be something like sweeping the kitchen floor, I will put the broom and dustpan down, then rest and watch the clock. After my determined minutes of rest are over, I lug myself off the couch and choose another task. As I move through my next task, I pay close attention to the signals that my body is sending me: am I perspiring more than usual? Are my hands beginning to quiver? Are my muscles aching? When the skin on my nose and face begins to feel cold and tingly, I know that I am running on fumes, and it's time to get horizontal for my ratio of rest minutes. 

It seems to be working, for a whole week. I'll keep you posted.