Recharging

Ah, geez, guys.

My brain is moving pretty slow today. Still recovering, I guess. I'm waiting for that familiar prednisone zing to arrive, but it hasn't yet.

While I'm waiting for the chocolate cake cravings to hit, I'm camped out here on my couch watching the old movie channel. Ah, but that doesn't mean life is dull. I'm watching a Jeanette MacDonald and Nelson Eddy movie made in 1937. Just the ticket for today - no commercials and a boring an easily followed plot.

Oh, and I'm watching the progress of the sun tea brewing on my kitchen windowsill.

Lulu is thrilled.

Yep. Just another exciting day in the life of a Sjoggie....

UPDATE:

As of 10:42PM, my prednisone has kicked in. Hands still swollen and sore, but eyes popped open and I'm planning Halloween decor, Christmas gifts, and vacations for the summer of 2011. Did all the dishes and swept the floors. Have dumped a half a box of granola and a third of a bottle of honey into a bowl, deluged it with milk and have most of it consumed. Attempted to give the dogs a bath but they were successful in running for their lives. Flipped through all 500 channels on TV and have set approximately 45 upcoming programs to record. Wondering if any donut shop in the metro area could be bribed to deliver a couple dozen at this hour of the night...........passed a mirror and nearly fainted at the sight of my "Crash Hair". You know the hairdo - the one where you've been passed out for oh, say three days or so without knowing or caring what that mop on top of your head has been doing. And then you find out and it scares you to death that anyone in the neighborhood has seen your hair. With your head attached. And your body and legs attached....good grief! Are these the same pair of sweat pants that I put on Sunday night??

A Very Good Day

Sunday's weather was absolutely splendid. We decided to grab my camera, throw the dogs in the car, and take a drive up the Gorge; the place where the Columbia river has carved a deep passageway through the Cascade mountains. Within half an hour, we were treated to sights like this:

And this:

A traveler through the Gorge has two choices of roads: Washington State Highway 14, which is by far the most breathtaking but is only a two lane road with sharp twists and turns as it follows the river. Across the river, one can take I - 84 which is a multiple lane freeway. Definitely the best choice if one cares less about scenery - although it is beautiful - and more about getting somewhere quickly. We chose 14 and were happy to meander along with other tourists. We followed a couple traveling in some kind of antique convertible and I hope they don't mind me putting up their picture here. They looked as though they were having as much fun as John and I were and I envied them their great set of wheels.

Maggie and Lulu were glad we brought them along. They love an adventure.

I loved the fact that my telephoto lens on my trusty Canon allowed me to take these pics as we were whizzing along. We passed the Bonneville Dam,

And Mount Hood.

Saw a paddle wheel boat make it's way downriver,

Watched fearless wind-surfers,

And drove through several sets of beautiful old tunnels.

About halfway through the Gorge, we turned north and made our way up and out of the river area into the Cascades toward Mount Adams.

We arrived at our destination, a snow park frequently visited by John and the kids every winter for cross country skiing. It was a great place to take the dogs for a short hike enjoying the solitude amid the giant Douglas firs.

What a great day.

I wish that I could report that a fabulous outing such as this left me refreshed and invigorated, but, it didn't.

I'm writing this post on Monday evening after having taken the entire day to rest and recover, and I'm really cranky about that. I took every precaution that I could think of - I slathered every exposed inch of my body in sunblock, I wore my sun hat and sunglasses, I drank gallons of water, and I monitored my energy levels carefully. As we drove home, I was certain that I would only benefit, not suffer from such a great day trip.

But I awoke Monday exhausted with hands swollen and several joints red and hot. I got out of bed only long enough to call my doctor, swallow that day's pills, and head back to bed. Now, with an increased dose of prednisone on board and more to come in the days ahead, I know that the combination of meds and serious rest will get me back on my feet.

Grrr. It sometimes seems as though my body punishes me for having a good time.

But I know better.

I know that actually I'm fortunate to have any days at all when I can do the things that I want in such good company and in such a beautiful place. If a day or two of rest and popping a few prednisone pills are the price to pay for glorious days like Sunday, then I should consider myself lucky. And I do.

I Will Never Be One of the Cool People

I've been reading snippets of some very successful edgy blogs.

Out there in the blogosphere, several wildly successful blogs such as dooce are authored by women who are seriously into motherhood and domesticity BUT can do so without appearing corny simply because their about me sidebar says things like this:

This website chronicles my life from a time when I was single and making a lot of money as a web designer in Los Angeles, to when I was dating the man who would become my husband, to when I lost my job and lived life as an unemployed drunk, to when I married my husband and moved to my mother's basement in Utah, to when I became pregnant, to when I threw up and became unbearably swollen during the pregnancy, to the birth, to the aftermath, to the postpartum depression that landed me in a psyche ward.

Whoa. Dooce has faced tremendous difficulties that she and her family have had to endure, bless her. And I don't want to insinuate that any of those experiences are enviable. Doose's reputation as edgy and hip has come with a steep price to pay. After struggles like those, she deserves all the good things that have come as she has fought her way back to normalcy. 

But in observing these authors' use of language and words and expressions, I have discovered that I and my attempts at writing are hopelessly unhip. I don't even know how to use the right words to express the fact that I'm just not on the cutting edge of life and never have been.

I suppose I could get all devious and concoct some elaborate and completely untrue life struggles and write about them in my about me sidebar, but then I wouldn't deserve any recognition that came because of it. Besides, I'm so completely clueless that I wouldn't be able to artfully construct a bunch of hooie that anyone would believe, anyway.

I don't use the f bomb or other obscene words. Never have. Never will. I won't describe any aspect of my or anyone else's sex life. I have lived a hopelessly non-traumatic life. I can't blithely refer to my days spent as a druggie, or time spent in a large metro area in poverty, or of my previous abusive relationships, and then write about life with descriptions shaded with a cynical perspective. I've realized that I haven't authentically earned my right to do so while also thanking my lucky stars that this is true.

 In reading these other blogs, in between episodes of cringing at some of the language, I've learned a few other tidbits about myself. One of these lessons that I've learned is that I use asterisks to describe actions. I did not realize that this was a very uncool thing to do:

2. People on the internet putting a phrase between asterisks as if they are actually doing whatever that phrase says.

This is pretty harmless but I can't help but wince every time I see it. It used to happen more in forums or message boards, but now it happens on Twitter. Like maybe someone mentions swimming, and another person replies, "Sounds fun! *puts on swimsuit, cracks open a beer*" This is so nerdy it makes me feel feverishly uncomfortable on your behalf. You're not really doing that. No one believes you're doing that. We all know you're in your office right now. And we all know that now you secretly want everyone else in your Twitter stream to follow suit and start some weird fake textual pool party.

Person A: *jumps in* Cannonball!
Person B: *mixes mai tai, passes to Person C*
Person C: *takes off top, forget she's married*

So this is just like a strange live action role playing you're playing by yourself, with words. It's like you just can't shake King's Quest, or you still want to be Leisure Suit Larry. You are forever in the cavern of the Evil Wizard. Around you are the carcasses of slain ice dwarfs.

If you replied, "*picks nose, refreshes page*" at least it would be true, but it would still be lame. 

(you can read more of Que Sera Sera here.)

Wow. I have no idea who Leisure Suit Larry is. And who or what is King's Quest? And I'm not clicking on the Evil Wizard link, either. *furtively opens another browser tab and clicks away*

I'm a dork. Naive. Always have been. Always will. So I guess that Reasonably Well - and me - will have to remain simply who we are.

Hopelessly corny.

Pastry Research and Development

I am going to make a wedding cake in August for a friend, so I've been experimenting with a few recipes.

The bride wants the cake to have a chocolate hazelnut filling, which I haven't made before. Time for Julia to put on her apron and dust off the ol' KitchenAid mixer. I love the research and development phase of baking projects. My friends do too. Well......most of the time. But then, that's the nature of R and D, right? Some results are better than others, I guess.

So here's a slice of experimental wedding cake number one:

The cake is a vanilla/sour cream from scratch recipe. The frosting is vanilla buttercream, and the filling made from Nutella spread mixed with toasted hazelnuts and blended with buttercream. Mmmmmm. Wonder how it tastes with a glass of ice cold milk....

So, that would be YUM.

I have sent generous slabs of this cake to various friends for their input. All were happy to oblige, I might add.

And the verdict?

John liked it. All of it. Terese pronounced it tasty but thought she might need additional samples for future research. Dave was salivating hours later as he thanked me during a phone call.

I thought the vanilla/sour cream cake layer had a good texture - substantial but not gummy, moist, and very flavorful but not overly sweet. It was a little hard to remove the cakes from their pans, but I think the flavor and texture of this cake make futzing around with the pan worth the effort.

I'm thinking that both the buttercream frosting and hazelnut filling need a little more experimentation. The frosting was tasty, sweet without being sickening, and easy to make and handle. But the finished result, although smooth, looked grainy after a few minutes.

The bride requested a very simply decorated cake, so the finish on this frosting will be very noticeable. Grainy just won't cut it.

The chocolate hazelnut filling tasted exactly the way that I hoped it would - fudgy and crunchy with toasted nuts. But the consistency was too thick and difficult to spread.

Oh, darn. I suppose this means I'll have to turn out a few more experimental cakes over the next month or so. And give them some intense taste-testing sessions.

It's a tough job, but somebody's got to do it.

To Swim or Not To Swim.......

WPA poster from Library of Congress

Being the contrary person that I am, now that I have decided that it simply isn't possible for me to go swimming, (see my previous post about exercise), I have developed an irresistible urge to GO SWIMMING.

Geez.

I know who to blame for this conundrum. Bratty Inner Child Julia, of course. The discussion went something like this:

Dr. J: Swimming would be really good exercise for you.
Me: I agree.
BICJ: No way! It's tooooo haaaaaaaaarrrrrrrrdddddd!! And I hate my stupid ugly swimming suit and it's too hard to put on and a real pain to get off and I don't want everybody in the swim club see me walk over to the pool and the chlorine in the pool makes my eyes burn and my skin itch and they don't have shower curtains in the shower so everybody sees everybody else's everything and they have stupid wall mounted hairdryers that just blow your hair so that it looks like a scarecrow and then I'll have to put dumb moisturizer and sunscreen back on a and put all my dopey clothes back on and then I'll be crashed out for the day on the crummy stupid couch and blah blah blah blah.....
Me: I agree.
BICJ: *suspicious silence*
BICJ: But I waaaaaaaannnnnnnaaaaaaaa go swimming!! I like the way it feels bobbing around as if you don't weigh a thing and I can hold my breath and float on my back and just look up at the ceiling or close my eyes and pretend that I'm out at sea and the cool water feels so good especially if I'm all hot and sweaty from getting into my suit and blah blah blah blah blah.....
Me: Sigh. Ok, then. Let's go swimming.
BICJ: But it's toooooooooooo haaaaaarrrrrrrrdddddddddd!!! I don't do haaaaaaarrrrrrrrddddd things!! Waaaaaaaaaa!!
Me: Ok, ok, just settle down, willya? What do you like best about swimming, BICJ?
BICJ: *sniff* Dunno. Grumble.
Me: Is it the cool water? And the nice floaty feeling?
BICJ: I suppose......
Me: Well, how about this? We'll take Maggie and Lulu for a little walk to get our exercise, and then - we'll take a bath in our big ol' bathtub. We can get all nice and cool in the water and since it's a ginormous tub, we can almost float in there. And - then we won't have to shower in the morning! How about it? Huh? Huh?
BICJ: Only if I can have a frozen margarita afterwards.

Smooth Breakfast

Image found here.

Where have smoothies been for my entire life???

I have been looking for a healthy breakfast food that doesn't involve opening a box and pouring dry flakes into a bowl. Or breaking eggs. Or baking of any kind.

Further evidence of my lazybutt tendencies.

It's a sunny warm morning, so I decided to get creative and make a cool and fruity breakfast. Now, I know smoothies for breakfast have been around forever. But since this delightful morning treat has somehow escaped my attention, for me it's a real revelation. An amazing new culinary creation.

I filled a mini-blender container about half full of my latest food obsession - frozen mango chunks. I blobbed in about a third of a cup of organic vanilla yogurt. Then added organic orange juice. I resisted putting in the margarita mix that was in the refrigerator sitting tantalizingly close to the orange juice........mmmmmmmango margaritas.......mmmmmm. But at 8:00 AM? Nah.

After a few minutes of blending, I had a yummy mango yogurt orange smoothie, almost the consistency of frozen yogurt soft-serve.

There's got to be something wrong with this. It's too delicious and tangy and yummy.

Get Moving, Girl!

Image by shorpy

In my last office visit with my new rheumatologist, we discussed my exercise habits. Or, the lack of, to be more specific. Dr. J. firmly believes, and rightly so, that regular exercise is an important tool in the treatment of autoimmune disease. We discussed how difficult it is to walk that fine line with exercise - too little causing an increase in de-conditioning and weakening of muscles, and too much overtaxing my energy and backfiring by resulting in a day or two of complete rest.

However, I didn't volunteer the information that I am, in fact, a lazybutt. I'll bet Dr. J. will figure that out all on her own soon enough.

We discussed the benefits and difficulties of various types of exercise. Dr. J. mentioned that many autoimmune patients find exercising in a swimming pool to be very therapeutic and enjoyable. People dealing with joint issues, especially those with any type of arthritis, find water exercises particularly helpful since the water reduces the weight burden on joints. You can read more about the benefits of water exercise on the Arthritis Foundation website.

I thought back to my last experiences with swimming, and had to agree. I love the sensation of floating in a pool. What I find difficult about swimming is everything that is necessary before and after getting into the swimming pool.

Since I don't have a pool in my backyard, or one within walking distance, to swim for exercise would require me to purchase a membership in the local swim and sport club. Then I'd have to pack a bag, and drive to the club. I'd have to change clothes and struggle into my squishy spandex suit. (And yes, it is a struggle. Trust me. I've discussed this ridiculous exercise before.) I'd have to find the largest beach towel I could and wrap myself in it for the walk from the changing rooms to the pool, lest a small child see me in a swimming suit and be scarred for life.

Once I finally got there, I would love being in the pool, and I'll bet all of the exercises would be enjoyable and very good for my joints.

But.

After class, I'd have to struggle OUT of the swimming suit. It always seems even harder to get it off than on....shower, get dressed, dry my hair, slather on moisturizer from head to toe, jam all my stuff back in my bag, get in the car and go back home. Good grief. Forget the exercise class - I'd be wiped out simply from all the machinations of getting ready for and cleaning up after.

I wish there was an easier way.......hm.........let's see.........

OK. I've got it. We need to put an addition on the house that includes an indoor swimming pool. I wouldn't have to worry about UV rays, and, I could just jump in there wearing anything I want. Or not wearing anything I want.

Oo. Sorry. Didn't mean to bring that haunting image to mind.

I could paddle away to my hearts content. I'll bet I'd be in there every day.

Actually, I do have a few friends who are lucky enough to have their own pools. They have mentioned that the freedom to jump in anytime they want does come with a whole other set of responsibilities - to keep the pool clean, to buy and use chemicals (and I wonder how that would affect me..) to test the water weekly, and to pay for the energy bill to keep the water at the correct temperature and recirculating pumps running. The pool requires some sort of access safety feature to keep little kids from falling in. And their home insurance bill rises significantly when a permanent home swimming pool is part of the policy.

Well, geez. There goes that idea. Too bad. Guess I'll just have to be a couch potato. *Julia takes a running jump and plants herself firmly in front of the television*

Ah, but of course, aside from swimming, there's many other ways to exercise.

Dr. J. made a simple, common sense suggestion: "You don't need to take an exercise class if that's problematic. You just need to move more. It doesn't matter what you do."

She pointed out the pedometer attached to her waistband of her pants, and suggested that I get an similar inexpensive model, strap it on, and just begin to note how many steps I take during the day. After establishing a baseline, she thought it might be a good idea to just add a few extra steps every week and gauge my body's response.

"You don't need to be walking miles and miles every day," she said. "Adding more movement of any kind is beneficial. Just do a little bit at a time."

That's so crazy........it just might work. Dang. Time to get off the couch.

Sjogren's Syndrome and Angular Cheilitis

Image found here. 

Did you ever have to deal with those painful cracks and sores that occur at the corners of your mouth?

Lately, ever since our trip to the hot and dry southwest, I've been dabbing various ointments and lip balms on my lips in an attempt to heal these annoying and sore areas. I knew the medical terminology for them - angular cheilitis - but always assumed that they were simply the result of dryness and lack of saliva.

I did a little more research on angular cheilitis and found that my assumption was only partly correct. Yes, AC is definitely impacted by dryness of the oral mucosa, but also can be caused by an infection of Candida albicans, or an oral yeast infection. Decreased amounts of saliva in the mouth can set up an ideal environment for a Candida infection by the Sjogren's related alteration of pH, and reduction of the antimicrobial and other buffering components found in normal saliva. You can read more about how Sjogren's alters normal saliva here. Here's an interesting paragraph from the Johns Hopkins Arthritis Center:

Individuals with Sjogren's syndrome often will complain of taste alterations which may in fact be related to decreased solubility of food within the oral cavity by virtue of less fluid available and the associated absence of a substance known as gustin, a normal constituent found in salivary fluid. The antimicrobial aspect of saliva is related to the presence of several key components, namely secretory IgA as well as alpha and beta defensins, lysozymes, lactoperoxidase, lactoferrin, and histidine-rich proteins or so-called histatins. In the absence of saliva, these important elements are missing, therefore, one may expect an increased incidence of intraoral and oropharyngeal yeast infections, gum disease and dental decay.

Hm. I wonder what other symptoms that accompany an oral yeast infection?

Commonly called thrush, MayoClinic.com has an excellent online article which defines the condition and offers some home remedies. The following information has been taken from their site:

Oral thrush is a condition in which the fungus Candida albicans accumulates on the lining of your mouth. Symptoms include:

• Creamy white lesions on your tongue, inner cheeks and sometimes on the roof of your mouth, gums, or tonsils. 
• Lesions with a cottage cheese type appearance.
• Pain
• Slight bleeding if lesions are rubbed or scraped
• Cracking at the corners of your mouth
• A cottony feeling in your mouth
• Loss of taste

Some remedies suggested by MayoClinic.com:

• Eating unsweetened yogurt
• Taking acidophilus capsules
• Practice good oral hygiene
• Replace toothbrush
• Try warm salt water rinses: 1/2 teaspoon salt dissolved in one cup warm water. Don't swallow the rinse. 
• Limit the amount of sugar and yeast containing foods in your diet

If the above suggestions don't reduce your symptoms, see your doctor. Patients with compromised immune systems may require additional prescription anti-fungal medications to completely eradicate the infection.

What?! Decrease sugar and yeast containing foods??

Yet another reminder to eat healthy foods. Drat.

Foods With Faces

I.............I just can't do it. I'm sorry, family.

I can't eat food that has a face. Still attached. It's simply not possible.

We asked John to choose a restaurant in which to eat his Father's Day dinner, and he picked a sushi place. Our first round of sushi was presented beautifully on a wooden boat - shaped platter.

I thought it looked delicious, until I saw this:

Egads!

Gadzooks! Now I know that this guy was intended as a garnish, not as part of the entrée, but still. He seems to be guarding the sushi that has the rest of his body parts on it.

Ewww.

If I recall correctly, I couldn't eat my last restaurant meal either, since it too had facial features. (Remember Monsieur Google y-Eyed Tuna Salad Man?) Hm............maybe I'm onto some kind of aversion diet therapy here.........

My apologies for the blurry photos. My phone camera isn't great.

I Hope All You Dads Had a Great Day!

Ever since our kids were little, they called John Daddy-O. Awww. So if you're a dad, a daddy, a papa, a pops, a pop-pop, a grandpa, or whatever nomenclature your kids have chosen, I hope that you had a happy Father's Day!

Quality of Life For a Sjoggie

Warning: Venting in process. AKA Julia spouting off, indulging in excessive whineybutt behaviors, and/or tantrum-ing.

Image found here.

I've been doing various scientific literature searches ever since I began writing Reasonably Well, so I've read countless abstracts and conclusions of zillions of studies related to Sjogren's Syndrome.

My most recent searches have been directed towards documentation studying the impact of quality of life for patients with Sjogren's Syndrome. As in: Am I the only one who feels amazed at the enormous implications of this disease? Am I the only one that is resentful that my career has been snatched away from me? Am I the only one that thinks wistfully back to previous activities and hobbies that are now beyond my capabilities? Am I the only one that is furious that my mental capabilities have been diminished now when I need them the most?

According to numerous studies, no, I am not alone in my symptoms and feelings, and of course I realize that. Here's a small sampling of research-ese that confirms this. From Oxford Journals Rheumatology 2004:

FIG. 1. Mean and 95% confidence intervals for fatigue and general discomfort ratings at worst in the Sjögren's based questionnaire tool (7 = worst imaginable) for healthy controls and three disease groups.

Translation? Yes. Sjoggies have fatigue, low stamina, poor memory and discomfort much greater than the general population and similar to those with rheumatoid arthritis and lupus.

Here's another study entitled "Primary Sjögren's Syndrome: health experiences and predictors of health quality among patients in the United States", published May 2009 and found here, on the NIH PubMed site. Their conclusion:

"Diminished health quality and excess health costs are prevalent among PSS patients. Health experiences and functional impact of PSS is similar among US and European patients. Delayed diagnosis, sicca related morbidity, fatigue, pain and depression are substantial suggesting unmet health needs and the importance of earlier recognition of PSS."

Table 1

Patient profile: Demographics and clinical features

Demographics and Clinical Characteristics	PhysR-PSS	Controls
	N = 277	N = 606
Age (Mean ± S.D.)	62 ± 12.6	61 ± 12.2
Gender (% Female)	90%	92%
Employment Status
Employed (net)	38%	49% (1,2)
Not Employed (due to disability)	12%*	0%
Disease Duration (Mean ± S.D.)	9.0 ± 8.4	N/A
Time from first symptom to diagnosis (Mean ± S.D.)	7.1 ± 9.4	N/A
Extra-glandular Symptoms
Raynaud's	51%*	14%
Forgetfulness	67%	62%
Depression (reported by patient)	54%*	41%
Lymph node pain or swelling	41%*	12%
Muscle pain	60%*	42%
Joint pain	78%*	52%
Neuropathy ("pins and needles," tingling and/or numbness in extremities)	70%*	41%
Extra-glandular Conditions
Purpura/petechia	14%*	4%
Vasculitis	17%*	2%
CNS Sjögren's	22%*	1%
Leucopenia	21%*	5%
Lymphoma	12%*	2%
Lung Disease	16%*	6%
Ocular Sicca-related Disorders
Chronic blepharitis	30%*	5%
Corneal scarring	18%*	2%

* p < .05.

Want another translation? Hell, yes!!  Sjoggies, represented by the first column and the higher percentages, have significant and life-changing symptoms of this disease. Symptoms that are not recognized early and even when diagnosed and documented, are poorly treated with resulting diminished quality of life.

Each and every study that I have read inevitably ends with a phrase similar to this - Sjogren's Syndrome is a progressive and treatment-resistant disease. More research is needed.

!!!!!!!!!!!!!

So get on it, all you researcher-type people! I KNOW that my quality of life is crummy. I want you to spend less time proving that my quality of life is crummy and MORE time figuring out a way to make things better!  

!!!!!!!!!!!!!

*Julia mops perspiration from brow and attempts to calm her fiery-eyed snorting*

OK. Whew. I'm done. Gee, I feel better. Exhausted from all that screaming and yelling, but better.

As you were, people. Carry on.