Monday, January 31, 2011

It's Good To Be Queen

image found on All Things Crowned

While eating lunch yesterday, my son dropped a big blob of chili right down the front of his shirt. He looked down at his stained shirt, then he and everyone else around the table looked at ME.

"What?" I looked blankly back at THEM.

They all burst out laughing. "Yeahhhh.....just like Mom," my daughter giggled.

I had to admit...they were right. I am the Goober Queen. Undeniably.

I really wish that I could attribute to Sjogren's syndrome and autoimmune disease my powerful goober skills. And, I suppose for other sjoggies who are goober novices, the argument could be made that autoimmune peripheral neuropathy could affect coordination to cause an accidental goober or two.

But actually, I think I was a goober princess from the time I grabbed a spoon as a baby and probably slathered it's contents all over myself. It took years of practice for me to evolve into a true Goober Queen.

I've goobered my way all across the world. I remember dumping contents of a beer stein down my blouse in Germany, have dribbled tea onto my lap in London, and most recently slobbered my way through Vermont, specifically in the Ben and Jerry's ice cream factory, (chocolate...mmmmm) and Philadelphia, (ooey gooey cheese steak). Oh, and sauteed onions. Lots of onions.

My goober skills have become so well known in our circle of family and friends that they tell me that my name has become not only a proper noun, but also a verb.

julia: jool' yah (v): to dribble, slather, spill, drool, drip, overflow, overrun, overturn, ooze, scatter, shed, spill over, splash, splatter, spray, sprinkle, spurt, squirt, drizzle, leak, seep, slobber, or spout a food or beverage or otherwise brightly colored liquid prominently onto one's clothing.

So, yep. That's me. The Goober Queen title is mine. I am the patron saint of dry cleaners everywhere. Specifically the ones whose staff are handed hopelessly stained plus-size blouses.

What? Think you can wear the Goober Queen crown, do you?

Bring it. I double dog dare ya.

Sunday, January 30, 2011

Sunday Smiles

Courtesy of Cute Overload and YouTube:

Saturday, January 29, 2011

I Want To Not Care

So the other day, I was walking into the locker room at the community center. A senior water exercise class had just finished, and I could hear laughter and chatter coming from the room even before I opened the door. But as I pushed the door open, an unusual sight greeted me.

Wowsers. Um. Well.....

A '70 something, quite chubby lady had chosen a locker directly across from the front door. She was completely naked and was wrapping her hair in a towel after taking a shower. I happened to walk in just as she was bending over to position the towel, her backside prominently displayed squarely in front of the door.

Yes. I was mooned in the locker room.

After I put my eyeballs back into their sockets and looked around, I realized that this lady was not alone. There was a whole pack of them. Naked. Laughing. Chatting. Casually pulling off their swimming suits or pulling on their underpants. Not one of them had a bra on, and none of them had ever had breast implants. Obviously. None of them looked even remotely like the tanned, svelte seniors in the AARP ads.


Whoa. I quickly chose a locker, ditched my stuff, locked it up and escaped as hastily as I could while keeping my eyes on the floor. The ladies didn't even notice that I had been there, I'll bet. I could hear them continue to chatter and banter halfway down the hall as I headed out to the exercise area.

This was interesting food for thought as I began walking around the track. I mulled the experience over for awhile and finally came to the conclusion that I certainly wasn't prepared to walk in on a gang of naked elderly women. But that I should definitely learn something from them: THEY DIDN'T CARE. They didn't have perfect bodies. Probably never have. Parts of their anatomy had obviously shifted in major ways. But THEY DIDN'T CARE. They were laughing and having a grand time and THEY DIDN'T CARE who saw them or what others thought about their time-worn bodies.

I am so not there. Yet.

But I want to be. When I'm in my seventies and beyond, I want more than anything to be casually hanging out in the community center locker room in my birthday suit, laughing with my friends. Not caring who saw me. But loving life.

Friday, January 28, 2011

I'm Taking This Slowly

I've spent more than my fair share of time over the past few years whining about my inability to exercise. Or maybe I mean that I don't tolerate exercise very well. Or mostly that I just don't LIKE to exercise.

So two weeks ago, when Terese brought up the idea of us joining some kind of exercise facility together, I looked at her skeptically. She broached the subject very, very carefully. And watched my reaction out of the corner of her eye.

As we were talking, I had flashbacks to the last time that I joined a health club, which had to be at least four years ago. I joined this particular one because it was the closest one to our house. I thought - foolishly - that this would mean I would be there several times a week. Yes, I thought. I'd just pop over there and take a few laps in the pool. Or spend an hour or two on their exercise machines. Four days a week. Sure thing.

Gee whiz. It just didn't seem to work out that way.

Yes, partly because at the time I was still in the "no pain no gain" frame of mind which left me totally exhausted with screaming muscles more often than I care to remember, but also because of the atmosphere of that particular club. I was surrounded by clientele who were easily fifteen years younger than me, on average. Every wall surface was mirrored. As I schlepped myself onto the treadmills or ellipticals, there was no escaping staring at my sweating and obviously very out of shape body in stark contrast to the perky soccer mom that was inevitably effortlessly working out on the machine next to mine.

Never in a million years, I was thinking to myself as Terese talked about her opinion of various athletic clubs and facilities that she had already checked out. I mentally checked out of the conversation until I hear a fragment of an interesting sentence - " then I thought about the community center run by the Parks and Recreation department."

I thought about that. When we lived in Wisconsin, our family belonged to a local YMCA. Yes, it had exercise machines and swimming pools and a gymnasium, but that's where the similarity to the private health club near our home here ended. I felt more at ease there because there were many more people that looked just like me on those treadmills. There were little kids running around everywhere, and if I wanted to to walk the walking track, I had to muscle my way in there among the gang of seniors that owned that turf.

We toured the community center last week, and as we walked into the lobby, I was impressed. We grabbed our visitor passes, signed in, and took a walking tour past a pool full of giggling splashing kids and their parents and a basketball game intently played by a large pack of teenagers. As we walked up the flight of stairs to the exercise area, I couldn't resist smiling in reminiscence. Yeah. It felt just like our old Y. There were the seniors pounding the walking track. Sure, the exercise machines were populated with a fair amount of those impossibly perfect bodies, but there were an equal number of people who looked just like me. Just. Like. Me.

There was a noticeable lack of wall-sized mirrors. Oh, yeah. I liked it.

So I signed on the dotted line. I think Terese was in shock, but she hid it pretty well.

I've only exercised there twice, today being the second time. Unlike my last venture into an exercise facility, I'm going with the mindset that my visits there are all about me. Not about impressing the other patrons. Not about letting the staff push me further than I know my body can go. Nope. After getting a basic orientation to the facility, I'm exercising there while paying close attention to my body's response to this very careful re-entry into  exercise.

I know that I can't make any kind of generalizations about my experience there yet. It's far too soon to tell. But there's a few things going for me this time around - I feel comfortable walking into the building, and I can walk OUT of the building. Instead of crawling.....

I'll keep y'all posted.

Thursday, January 27, 2011

Vitamins, Supplements, and Sjogren's Syndrome

When readers email questions to me, it sure makes choosing subjects about which to write much easier. So thanks to G. for sending this question regarding the use of vitamins and herbal supplements to reduce the symptoms of Sjogren's syndrome.

Before this discussion commences, however, I'd like to point out something VERY IMPORTANT. So pay attention here, people.

Supplementing with vitamins or herbal products can be helpful to some - but downright dangerous for others. Many of these products can provide unwanted or harmful results in your body. Most of them can interact with many of the medications used in autoimmune and other diseases. Always - but always - check with your doctor before taking any of these products.

OK. Everybody got that?

Alrighty, then. On to G's question:

Does Vitamin D or GLA help?
You said spirulina is not good, but they say it contains high volumes of Omega 3 which I thought was good for Sjogren’s.
I hear good things about matcha tea. I was wondering your thoughts about it. 
Any other herbs that would be good to take? What about bilberry and ginko biloba?
I'm sure that most rheumatologists hear this and other questions like it frequently. Especially since in Sjogren's syndrome, often standard prescription medications may provide marginal or little relief of symptoms. It's so tempting to take a stroll down the supplement aisle of the local pharmacy and grab bottles of this or that or anything that promises increased energy and healthy joints.

But before you buy that bottle, take a look at the references below to make sure that when you swallow that capsule or pill, you aren't actually making your disease activity worse.

A general rule of thumb when viewing supplements and vitamin use in Sjogren's syndrome: If the product claims to boost your immune system, DON'T TAKE IT. Here's why: People with autoimmune diseases - yup, that includes sjoggies - have an immune system that does not need boosting. It's already too active. It's so active that it's attacking and destroying our own healthy tissue. Some herbals may increase this autoimmune activity or may counteract the effects on medications used to suppress autoimmune disease such as prednisone and methotrexate and may increase the likelihood of having a flare.

Herbals that fall into this category include alfalfa, astragalus, echinacea, ginseng, goldenseal, spirulina, and licorice root. See my link below to the Alternative Medicine Index to read more about these herbals.

With regards to the other vitamins and supplements mentioned in G's questions:

Matcha tea, which is a green tea commonly used in the formal Chinese tea ceremony, has an astonishingly long list of potential benefits, all supported by reputable studies: reducing atherosclerosis, reducing high cholesterol, avoiding cancer, reducing inflammatory bowel disease, improving diabetes, avoiding liver disease, assisting weight loss and even reducing tooth decay. You can read more about green tea and it's beneficial actions here. Like all herbs and supplements however, it also has potential side effects and drug interactions. You can find that information in the link above as well.

Vitamin D is a very, very good thing. You can read more about the benefits of this "sunshine vitamin" here. Here's a sampling:
"D is associated with massive decrease in breast cancer, prostate cancer, autoimmune diseases (including juvenile diabetes, inflammatory bowl disease, and multiple sclerosis).......even associated in such common, chronic problems such as high blood pressure and low birth-weight babies."
To find the right dose for you, check with your doctor. D is one of the two supplements that my rheumatologists recommends for me.

The other is fish oil containing DHA, a valuable omega-3 fatty acid. Which leads us to G's question about GLA, another of the body's essential fatty acids.

Here's where this discussion gets a little complicated.

This explanation and other following quotes are taken from the University of Maryland Medical Center:
Gamma-linolenic acid (GLA) is an omega-6 fatty acid that is found mostly in plant-based oils. Omega-6 fatty acids are considered essential fatty acids: They are necessary for human health but the body can' t make them -- you have to get them through food. Along with omega-3 fatty acids, omega-6 fatty acids play a crucial role in brain function as well as normal growth and development. Also known as polyunsaturated fatty acids (PUFAs), they help stimulate skin and hair growth, maintain bone health, regulate metabolism, and maintain the reproductive system.
Some studies also suggest that a healthy balance of omega fatty acids may reduce inflammation in the body and may also reduce symptoms of dry eye. Good stuff for those of us with Sjogren's syndrome.
Docosahexaenoic acid (DHA) is an omega-3 fatty acid. It is found in cold water fatty fish and fish oil supplements, along with eicosapentaenoic acid (EPA). Vegetarian sources of DHA come from seaweed. DHA is essential for the proper functioning of our brains as adults, and for the development of our nervous system and visual abilities during the first 6 months of life. In addition, omega-3 fatty acids are part of a healthy diet that helps lower risk of heart disease. Our bodies naturally produce small amounts of DHA, but we must get the amounts we need from our diet or supplements. Most people in the Western world do not get enough omega-3 fatty acids in their diet.
The key to using the omega-3 and omega-6 fatty acids in supplementation is to find the right ratio between the two. Most people have no problems eating enough omega 6 fatty acids. An average American diet typically contains 14 - 26 times more omega-6 fatty acids than omega-3 fatty acids.
For your overall health, you should try to balance omega-6 and omega-3 fatty acids. Aim for a ratio in the range of 2:1 - 4:1, omega-6 to omega-3. The average diet provides plenty of omega-6, so most people don't need to take extra omega-6 fatty acids. 
Keep in mind that too much of a good thing can actually be a bad thing:
Avoid doses of GLA greater than 3,000 mg per day. High levels may increase inflammation in the body.
As I mentioned earlier, these supplements do interact with other medications and have some unwanted side effects. A common problem in the use of fish oil and other essential fatty acids is the tendency to lengthen clotting time of the blood, which can be dangerous if you are already taking coumadin type medications which alter clotting times.

The University of Maryland's website on complimentary medicine and the use of herbals is an amazing reference for all herbal supplements. It's entitled Alternative Medicine Index and can be found here. Look on the left sidebar and click on herbs or supplements. You can read to your heart's content about ginko and bilberry there, as well, which both provide anti oxidants, but also may have dangerous drug interactions.

When reading this excellent information, be sure to scroll all the way through each article especially to the sections which discuss side effects and drug interactions. Seizures? Bleeding? Disease flares? NOT GOOD. Not kidding.

So to summarize this very lengthy answer to G's question, I would say that it is impossible for me to recommend any particular supplement or vitamin in the use of Sjogren's syndrome. Why? Because each of us has different symptoms and many of us are on medications which may interact dangerously with supplements.

I take vitamin D and fish oil supplements on the advice of my rheumatologist in doses prescribed by him, and I enjoy a cup of green tea most afternoons.

Ask your doctor for his/her suggestions for your particular situation. And tell 'em Julia sent you.

Wednesday, January 26, 2011

Can We Decrease Inflammation By Breathing Cleaner Air?

Image found here. 


A study conducted by Ryan W. Allen, PhD, and colleagues from Simon Fraser University in Burnaby, British Columbia, Canada, studied healthy adults living in a small community where wood-burning stoves are the main sources of pollution. Researchers theorized that study participants who routinely breathed air containing large amounts of particulate matter - or pollution - had higher levels of systemic inflammation resulting in increased cardiovascular disease. Participants were asked to use a HEPA air filtering mechanism in their homes for prescribed amounts of time and agreed to give blood samples during the study.

"Our main objectives were to evaluate the potential for a simple intervention to improve indoor air quality and reduce pollution-related cardiovascular health risks and to better understand the mechanisms that contribute to air pollution-related cardiovascular health problems," Dr. Allen said in a news release.

The report was published online January 21 in the American Journal of Respiratory and Critical Care Medicine.

You can read a complete report of this study on Medscape Medical News entitled HEPA Filtration May Lower Cardiovascular Risk.

Here's how Dr. Allen summarized their findings:

"Our results support the hypothesis that systemic inflammation and impaired endothelial function, both predictors of cardiovascular morbidity, can be favorably influenced by a reduction of particle concentration and add to a growing body of evidence linking short-term exposure to particulate matter with a systemic inflammatory response," Dr. Allen said. (Italics mine.)

Study participants had statistically significantly lowered levels of inflammatory markers which included C-reactive proteins after using HEPA filter mechanisms in their homes for a relatively short period of time - seven days.  During this period of time, the participant's C-reactive proteins decreased by an impressive 32.6%. C-reactive proteins indicate body wide inflammation and are often elevated not only in cardiac disease but also autoimmune disease.

To read more about lab studies to measure autoimmune disease activity, read this and this.

Other markers of oxidative stress (malondialdehyde, 8-iso-prostaglandin F2-alpha) and of inflammation (interleukin-6 and band cell counts) were also studied. Although inflammatory markers and measures of the health of the inner lining of blood vessels (endothelial function) were improved, oxidative stress markers remained unchanged.

The potential to reduce body-wide inflammation so problematic in many illnesses including cardiovascular disease but ALSO autoimmune disease - yes, that includes Sjogren's Syndrome - by simply plugging in a HEPA filter in our homes is nothing short of amazing.

You can read more about what HEPA filtering is and how it works here courtesy of Medline and the National Institutes of Health.

Tuesday, January 25, 2011

We're Packer Backers

I have a confession to make.

My family and I are.......cheeseheads. Yes, we are.

And with the Green Bay Packers going to the Superbowl this year, YEAHHHHHHHHHH!, I figured this was as good of a time as any to let our loyalties be known even though we live smack dab in the middle of prime Seattle Seahawk territory. I'm willing to make the Hawks my second-favorite NFL team, but my Pack fanaticism is and always will be number one.

Superbowl party at my house. Bring snacks - and your cheesehead. Go Pack!

Monday, January 24, 2011


So a friend of mine told me last summer that she thought it was time for us to downsize. "You really don't need a four bedroom house anymore, do you?"


She doesn't understand that even though all of our kids have moved out, their stuff hasn't. As a matter of fact, I think the kids have even more stuff here than when they were kids here.

Case in point: The Christmas light show extravaganza, which was my son's idea even thought it was our house that was decorated, is now in the deconstruction process. There's boxes and cords and junk everywhere.





And we're not even done un-doing yet.

Once everything is actually off of the house, we're going to pack it all in the basement. Next to where sonny boy keeps all of his fourth of July fireworks extravaganza stuff.

And don't even get me started on the girlies' stuff - closets full of prom dresses and scrapbooking materials and Barbies and My Little Ponies.

I love looking at all their junk still here in the house. It brings back such good memories and it makes me feel almost as though a part of them are still here. And someday, I hope that we have lots of our grandchildren's junk here too.

I think we actually need a BIGGER house.

Sunday, January 23, 2011

Time For Another Sunday Meditation

Image found here. 

All right, settle down, you rowdy sjoggie congregation. Let us bow our heads in prayer:

Dear God, 
My prayer for 2011 is for a fat bank account & a thin body.
Please don't mix these up like you did last year.

This too-good-not-to-pass-along tidbit courtesy of my friend Diane. I have no idea who deserves credit for it. 

Saturday, January 22, 2011

My Spectacles are a Spectacle

Groovy glasses found here

On my last visit to the opthamologist, my doctor finished my exam, stepped back and crossed her arms over her chest while asking, "Girl. How can you see ANYTHING with those glasses of yours?"

Turns out that in just one year, everything that could possibly be changed in my glasses prescription had changed. No wonder I've......well, let's just say that explains a lot.

So this week I'm on a mission to pick out a new pair of glasses, and to be honest? I'd rather take a beating. To quote my friend Bev.

This shouldn't be so hard, really. You go into the store. You hand over the prescription. You take a few minutes to choose frames. You look into the stupid grey triangle box measuring thingie. You pay the money. Bing ba da bing. Done.

But it's just not that simple for me. To begin with, I'm a real victim of analysis paralysis especially when a decision involves some kind of scrutiny of my body. Choosing new glasses requires one to stand in front of a mirror and stare at one's face for an extended length of time. And then make a decision that one has to live with until one is willing to fork out megabucks for another set of glasses. (With ultra-thin polycarbonate scratch coat-ed and tri-focal, lenses, please.)

Yeah. I'm not really wild about that exercise.

I have a square and chubby face, especially after the effects of the whole Thanksgiving/Christmas/New Year's calorie trifecta this year, yikes. AND then there's my stupid parotids that have the tendency to inflate and deflate whenever they feel like it. Of course, right now they have achieved impressive inflation. You think I'm kidding?

I told you so.

This, class, is a textbook presentation of an enlarged parotid salivary gland. *Julia looks intimidatingly over the top of her very ugly glasses* Pay attention, class! There WILL be a quiz. Note the area of enlargement directly in front of the ear, almost obstructing the lower ear lobe.


There is not one pair of glasses on this whole stinkin' planet that would look good on this noggin, and I know it.

So this time around, I've got a plan. I'm going to enlist my friend Susan, who has an unerring sense of fashion and the courage to tell me the truth. Some evening this week, we're going to tackle Binyon's together. We're going to fearlessly march in there arm-in-arm, try on every frame in the store, and I'm not even going to open my eyes until it's time to write out the check.

Now that's a true trusting friendship. Or something.

Then we're going straight home to the Bearded Dog Pub for a mango margarita or two.

Friday, January 21, 2011

Descending The Big Rock Candy Mountain

Image found here. 

John's mom has always had a special drawer in her kitchen.

The drawer houses her potholders and trivets and.............candy bars. Usually only three or four of them, but if you take one out, another one magically arrives to take it's place, which is pretty amazing when you consider the number of people that routinely check out the magic drawer.

Every now and then my potholder drawer contains a candy bar or two. Or three or four, depending on how BICJ is behaving herself. This month, she's been out of control, to say the least. Yes, my Bratty Inner Child Julia was unleashed from the moment we broke out the first candy cane of the Christmas season and still is on a sugar high....sigh. So there's been a fair amount of Snickers bars nestled in among the pot holders on a regular basis lately.

Last night, I slid the drawer open and rummaged around in there but came up candy bar-less. I rummaged again, this time bending over and peering closely inside. Sugar free gum, breath mints, two year old jelly beans......Hm. No candy bars. I stood up frowning. I knew there was a bunch of them in there just the day before.

"Oh, hey, Babe." John popped his head up over his newspaper from his recliner across the room.

"I knew you're trying to cut down on that stuff, so I ate 'em." He grinned. "Yep, I threw myself on that grenade just for you, hon."


I grabbed a banana instead. What a guy.

Actually, he's probably right about my trying to cut down on all the goodies. Every year I moan and groan and whine about how much candy and sugar I eat over the holidays, and then begin the painful process of weaning myself off all the sweets that I've become accustomed to eating.

In years past, I have relied on artificial sweeteners to help me down from the big rock candy mountain, but I'm reluctant this year to substitute my sugar rush with a Nutrasweet and caffeine high, for lots and lots of reasons. One being, of course, that artificial sweeteners are probably not good for most of us, but also that one of the leading theories regarding autoimmune causative factors may include hereditary tendencies, a viral or bacterial infection, AND unknown environmental factors triggering the disease. You can read more about autoimmune disease causes here.

Are artificial sweeteners and the other components of the chemical sea that we routinely swim through some of those environmental factors causing autoimmune disease?

That's a bigger issue than I'm willing to tackle today. I'm still cranky that my Snickers bars are gone from the potholder drawer, after all....but still, I'm hesitant to start slugging down cases of Diet Coke to keep me out of the WalMart candy aisle.

For now, I'm trying to substitute fruit when a sugar craving hits. Anyone have other suggestions? I really want to get down from this mountain.

Thursday, January 20, 2011

Punctal Plugs and Cautery in Sjogren's Syndrome

Stephanie asked this really good question recently:

One of my punctal plugs fell out. Its the 4th one, and they keep getting larger. My eye doc says this time I should have my tear duct cauterized. Sounds awful. (And yet, hopefully, I won't have to be so careful with rubbing my left eye.) Do you know of anyone who has had it done?

Well, Stephanie, I haven't had much experience - either with punctal plugs or cauterization, although I have read about both a great deal. I did try one set of the plugs but just couldn't get used to the sensation and so removed them immediately. My eye doctor told me that if my eyes continued to decrease in tear production, and if I didn't tolerate plugs, that cautery was my next option.

The puncta are small openings in the eyelids that allow tears to flow out of the eye and drain into the nasal cavity via the nasolacrimal duct. Punctal plugs are tiny plugs placed into these openings by a physician to force tears to remain longer in the eye.

Image found here. 

Any Sjoggies out there with experience with punctal plugs or cauterization? Stephanie and I both would love to hear from you.

You can read more about punctal cautery and plugs here and here.

Wednesday, January 19, 2011

I Think The Southwest Doesn't Like Me....

I am moving in extreme sloooooo-moooooo over the last few days.

John and I spent a few days in the sunny southwest visiting family and friends, what fun. It was a relaxing trip filled with lots of good food, laughter, and an adult beverage or two.

We arrived home on Monday evening, and I made the mistake of thinking, "Well. Came through that trip without any crash and burn episodes," and mentally patted myself on the back for.....I don't know what, but I felt like congratulating myself for something.

Then fell into bed for three days. Honestly, I still am struggling to remain upright for more than two hours, have acquired more new skin spots, and a few of my finger joints are swollen and hot and hurting.

It seems as though any time we visit the southwest, this is the result. Is it the sunshine? The dryness? What is it about Arizona and Nevada that causes me to flare? What is it? What? WHAT WHAT WHAT??

Couldn't possibly be the margaritas.

As always, I know that I'll survive, and that the experience was worth the flare that follows.

Heading back to bed. ZZZZZzzzzzzzzzzzzzzzz.......

Monday, January 17, 2011


I've been without internet access for the past few days, and I truly think I went through withdrawal.

I believe tonight we'll be back online.

See you tomorrow. Hopefully.

Saturday, January 15, 2011

OK, OK, Already!

Here's more pictures of John's Bearded Dog Pub, as requested:

Here he's surveying his domain.

This paint is one of those chameleon colors. It changes completely in different lighting. On the sample chip, it looks taupe-y brown. But sometimes it looks gold.....sometimes green. I like it.

Finally books on a bookshelf...

Now that the pool table isn't covered with junk, we'll actually get to play more.

While listening to some great music.


I feel a party coming on......

Friday, January 14, 2011

My Sjogren's Uniform

I've was thinking about uniforms today as I was getting dressed. Just barely before noon, but then that's a post for another day.....

UPS people wear brown shorts. Attorneys wear suits. McDonald's employees wear um...McDonald's stuff. Surgeons wear scrubs. Intel employees wear cool bunny suits.

 Intel bunny found here.

I used to wear a uniform. I remember the job I had in Minneapolis where I had to wear all white, including white pantyhose and white shoes and my white cap. When I headed off to work every morning, anyone who saw me would know without a doubt what my career choice had been back in '78.

Do you think people with chronic disease wear a uniform? If you were looking at a group of people, would you be able to tell their health status by observing what they were wearing?

I really hope not.

But I have come to realize that I do have a uniform of sorts......those clothes that I choose to wear most days.

My daily wardrobe choices have changed significantly since my diagnosis. Early on, I wore anything that was easily within reach, relatively clean, and uber comfortable. Some days I never got out of my jammies and bunny slippers.

I progressed to yoga pants and sweatshirts shortly after the jammy phase. And on flare days, this ensemble is still my first choice. But once I settled into my new autoimmune life, and found myself out and about on occasion, a new costume of sorts emerged.

It became increasingly important to me to look Reasonably Well. Hehe. Couldn't resist....but seriously, I did gradually come to realize that when I spiffed up just a teensy bit, I did feel a teensy bit better.

I found myself reaching for the same things on most days: A cotton no-iron blouse, a lightweight cardigan sweater, and a comfy pair of jeans. Finished off with washable wool socks, and a well-fiting and supportive pair of slip on shoes.

Image found here. I buy mine at Nordstrom. 

Dang, those Foxcroft people make a good blouse, even in my plus size. (And no, I don't get anything for plugging them. Rats.) They're kind of pricey, so I only buy them when they are on a clearance sale. The label says No Iron, and they weren't kidding. I can pull one of these babies out of the dryer and they actually look unwrinkled. Once in awhile I send them off to the cleaners with John's work shirts and they return all crisp and perfect. I buy them big enough that I can slip them right on over my head without unbuttoning all those pesky buttons.

My uniform has to be really, really easy to put on.

If the weather is cool, I add a cardigan sweater, which has to be washable and one of those pull-out-of-the-dryer-looking-not-gross kind. Then pull on a pair of jeans made with that great stretchy denim stuff.

I love washable wool socks, even in the warmer weather. When I stick my tootsies into a pair of them, invariably I can't help thinking, ahhhhhh. I might be imagining this, but I swear my heels crack less often and the skin on my feet is healthier when I wear these things. I usually end up buying Smartwool brand, mostly because it's the easiest kind to find around here. And yup, they're kind of pricey too. But cheapo me waits until the twice-yearly BOGO sale at our shoe store.

Um, yeah. That's ME wearing those socks. Sure. Uh huh. Definitely. Those ARE my legs. Right.

I've realized that I'm too stinkin' lazy to wear up lace-up shoes unless absolutely necessary, so the last step is to slip my feet into loafers. Or mules. Or clogs. Or whatever you want to call shoes that don't require bending over and tying or velcro-ing or snapping or whatever.

To be perfectly clear, here: Just because I'm wearing my uniform, doesn't mean that I look good. Yeah, if only it was that easy.....but it's comfy and I don't feel stupid heading over to the grocery store wearing it.

And, really - isn't not feeling stupid the most important thing?

Thursday, January 13, 2011

What Goes Up Must Come Down

Well, it's that time again. It's so much fun to put UP the Christmas decorations, but taking them down? Not so much.

Boooooring! And exceptionally dusty.

More boxes for John to pack into the attic. The guy is a storage genius. 

Those reusable 3M hooks? Holy no-need-to-pound-more-nails-in-the-drywall, Batman! Whoever invented these things is also a genius. 

If I were a genius, I'd go put my feet up for awhile after all this un-decoraing. 

See ya tomorrow. 

Wednesday, January 12, 2011

Hey, Good Lookin'.....Better Have Some Veggies Cookin'!

Mmmmmmm. Carotenoids......

Medical News Today featured this story recently: Want To Look More Attractive? Eat Carrots and Plums.

Me! Me! I want to look more attractive! Geez, I really NEED to look more attractive....

The story discusses a study conducted by Department of Experimental Psychology, University of Bristol, Bristol, UK and the Perception Lab, School of Psychology, University of St Andrews, St Andrews, Scotland, UK. It was published online by Evolution and Human Behavior on December 24th, 2010.

The focus of the study was to examine human perceptions of health based on carotenoid (orange-ish) and melanin (tan) tones in skin. Interesting. Readers of Reasonably Well know that I frequently lament my inability to tan, especially now that autoimmune related sun sensitivity is a problem. Well, view of this study's results, maybe it's time for me to quit obsessing with those tan-in-a-can products and start chomping carrots.

Here's what the study found:
" maximize apparent facial health, participants choose to increase empirically derived skin carotenoid coloration more than melanin coloration in the skin portions of color-calibrated face photographs. Together our studies link skin carotenoid coloration to both perceived health and healthy diet, establishing carotenoid coloration as a valid cue to human health which is perceptible in a way that is relevant to mate choice, as it is in bird and fish species."
In other words, people in the study perceived carotenoid skin coloration (or the orange-y color the a diet high in carotenoids provides) as appearing more healthy and attractive than the melanin (or tanned) skin appearance.

A food source that makes one appear more attractive? Carotenoids? What's a carotenoid? And where can I get some?

Carotenoids include naturally occurring sources of vitamin A, among other vitamins. Read this from the Linus Pauling Institute at Oregon State University:

Carotenoids are a class of more than 600 naturally occurring pigments synthesized by plants, algae, and photosynthetic bacteria. These richly colored molecules are the sources of the yellow, orange, and red colors of many plants (1). Fruits and vegetables provide most of the carotenoids in the human diet. Alpha-carotene, beta-carotene, beta-cryptoxanthin, lutein, lycopene, and zeaxanthin are the most common dietary carotenoids. Alpha-carotene, beta-carotene and beta-cryptoxanthin are provitamin A carotenoids, meaning they can be converted by the body to retinol (Figure 1). Lutein, lycopene, and zeaxanthin cannot be converted to retinol, so they have no vitamin A activity (Figure 2). Carotenoids can be broadly classified into two classes, carotenes (alpha-carotene, beta-carotene, and lycopene) and xanthophylls (beta-cryptoxanthin, lutein, and zeaxanthin).
Food sources of carotenoids are found in some animal sources such as beef liver but also in all colored fruits and vegetables, such as bright orange carrots. Aside from providing a more attractive skin color, vitamin A has numerous other important functions in our bodies. You can read more about carotenoids and vitamin A in this excellent dietary supplement fact sheet provided by the National Institutes of Health:

Vitamin A: What is it?
Vitamin A is a group of compounds that play an important role in vision, bone growth, reproduction, cell division, and cell differentiation (in which a cell becomes part of the brain, muscle, lungs, blood, or other specialized tissue.) [1-5]. Vitamin A helps regulate the immune system, which helps prevent or fight off infections by making white blood cells that destroy harmful bacteria and viruses [1,6-10]. Vitamin A also may help lymphocytes (a type of white blood cell) fight infections more effectively.
Vitamin A promotes healthy surface linings of the eyes and the respiratory, urinary, and intestinal tracts [8]. When those linings break down, it becomes easier for bacteria to enter the body and cause infection. Vitamin A also helps the skin and mucous membranes function as a barrier to bacteria and viruses [9-11].
In general, there are two categories of vitamin A, depending on whether the food source is an animal or a plant.
Vitamin A found in foods that come from animals is called preformed vitamin A. It is absorbed in the form of retinol, one of the most usable (active) forms of vitamin A. Sources include liver, whole milk, and some fortified food products. Retinol can be made into retinal and retinoic acid (other active forms of vitamin A) in the body [1].
Vitamin A that is found in colorful fruits and vegetables is called provitamin A carotenoid. They can be made into retinol in the body. In the United States, approximately 26% of vitamin A consumed by men and 34% of vitamin A consumed by women is in the form of provitamin A carotenoids [1]. Common provitamin A carotenoids found in foods that come from plants are beta-carotene, alpha-carotene, and beta-cryptoxanthin [11]. Among these, beta-carotene is most efficiently made into retinol [1,13-15]. Alpha-carotene and beta-cryptoxanthin are also converted to vitamin A, but only half as efficiently as beta-carotene [1]...........Selected plant sources of vitamin A (from beta-carotene):
Food Vitamin A (IU)* %DV**
  • Carrot juice, canned, ½ cup 22,567 450
  • Carrots, boiled, ½ cup slices 13,418 270
  • Spinach, frozen, boiled, ½ cup 11,458 230
  • Kale, frozen, boiled, ½ cup 9,558 190
  • Carrots, 1 raw (7½ inches) 8,666 175
  • Vegetable soup, canned, chunky, ready-to-serve, 1 cup 5,820 115
  • Cantaloupe, 1 cup cubes 5,411 110
  • Spinach, raw, 1 cup 2,813 55
  • Apricots with skin, juice pack, ½ cup 2,063 40
  • Apricot nectar, canned, ½ cup 1,651 35
  • Papaya, 1 cup cubes 1,532 30
  • Mango, 1 cup sliced 1,262 25
  • Oatmeal, instant, fortified, plain, prepared with water, 1 cup 1,252 25
  • Peas, frozen, boiled, ½ cup 1,050 20
  • Tomato juice, canned, 6 ounces 819 15
  • Peaches, canned, juice pack, ½ cup halves or slices 473 10
  • Peach, 1 medium 319 6
  • Pepper, sweet, red, raw, 1 ring (3 inches diameter by ¼ inch thick) 313 6

A diet rich in fruits and vegetables is good for you in so many other ways....but here's yet another reason to dive in to the veggie aisle in the grocery store. 

So go eat some carrots. You'll look fabulous, dahlingk. 

Tuesday, January 11, 2011

Sjogren's Syndrome and Rituximab

Medications used in the treatment of Sjogren's syndrome can often be confusing to patients. You can read my previous post regarding autoimmune drugs, here. I should have included use of the drug Rituximab in the biologic category. Luckily, another blogger has done a great job in discussing this medication's use in autoimmune disease.

This post, written in December 2010, contains excellent information about Rituximab use in Sjogren's syndrome. It was written by Ellen S. and the entire post can be found here.

"Rituximab is an injectible chimeric antibody. (A chimera is a mythical creature with body parts from different animals) In this case, Rituximab is part human and part mouse. Because it is prepared using the cells/proteins of living creatures it is called a biologic. Because it depletes the immune system it is also called a DMARD - Disease Modifying Anti-Rheumatic Drug.
Rituximab is used mixed with other fluids and given via IV once weekly. Each infusion may take 3-4 or more hours. It works as an autoimmune treatment by depleting the number of B cells - one of the many types of specialized cells in the immune system that play a part in inflammation. Normally, inflammation is a necessary and normal immune response. In autoimmune primary Sjogren's Syndrome, the inflammatory response is out of control.
Rituximab is not a first line drug. It is used only when other biologic medications have failed. Rituximab is an antibody that is specific for a molecule called CD20 that is normally present on the surface of B cells. The cells are targeted and lysed (destruction via explosion) by the Rituximab antibodies."
Read this well written post in it's entirety which includes links to studies of this drug and Rituximab side effects.

You can read more about Rituximab from the National Institutes of Health here.

Monday, January 10, 2011

I Love A Finished Project

Artsy-fartsy Greg made this schnauzer for us awhile back. It's going to be the pub's way cool logo. 

So the re-decorating project in the bonus room/Son's bedroom is now almost completed.

Jenny asked us for pictures of our clothing post-painting-project, but golly gee. This was one of those few times when I didn't photo document it all......however, perfectionistic Terese escaped with just a small paint smudge. Me? I dropped an entire roller-full of Valspar Dune down the front of my shirt. Of course.

We've debated endlessly over the new name for this room, and I think we've finally reached an agreement: it will now be called The Bearded Dog Pub. We name everything: cars, pianos, gnomes, storage sheds, and now.....a room, natch.

Cool, huh? Huh?

John and Greg and Terese and I hosted an informal pub grand opening last night. You'd think that after the hours and hours and sweat and toil that Terese put into painting that room, she'd just want to sit back and bask in the completed wall color.....but no. Of course the first thing she did was ask where the paint and brushes were so that she could do touch up stuff. Because she wanted this paint job to be absolutely perfect. Every drywall hole patched and painted, every square inch of wall evenly covered with paint. Pub perfection.

Good grief.

Notice the spot on the wall that's she's touching up with exceptional care and expertise. After which a few adult beverages were consumed and a dart game begun.

Guess who put the very first dart hole in the pristine wall??


The Dart Of Shame.

Better get that paint brush out again, Missy.

Sunday, January 9, 2011

An Autoimmune Call To Action!

I'm reposting this excellent opportunity for autoimmune disease awareness courtesy of Jenny at UII - Understanding Invisible Illnesses:

UII is working with Villanova University on a groundbreaking project!  Nursing students at the University will be researching what chronic/invisible conditions are present on campus, and doing projects on them and the effects they can have on body image!  This will be presented in combination with an existing program - "Love the Skin You're In", a body-image focused fashion show (held this year on February 7).

At the University's request, UII is coordinating a live panel discussion, which will take place on February 22.  In addition, we have decided to develop a visual display to accompany the fashion show (there will be many displays with body image and health information, as well as the student projects).  This display will then 'travel' the campus as promotion for the panel discussion!  That means at LEAST two full weeks of exposure raising awareness of chronic and invisible illnesses on a campus of nearly 10,000 students, staff, and faculty!

But to make the display a reality, we need YOU!  We are asking people from around the country (and around the globe) to send in your pictures showing the 'hidden' aspects of the conditions you live with, such as:

  • Good health days (put together, well rested, makeup and hair done, etc) versus flare days (blotchy skin, rashes, exhaustion, oily unwashed hair, and so on)
  • Scars, hair loss, patches on skin, or other permanent 'marks' of your condition(s)
  • Revealing the hidden devices you use (insulin pumps, prosthetics, etc)

See the bottom of this post for a list of ideas, but use your life for inspiration!  The sky's the limit.  Our goal is to show what lies below the surface; what we really look like in the throes of our conditions.  Our battle scars, if you will.  Also, take an artistic and white, close ups, high or low angles...anything that emphasises your subject is great!

General information: 
The deadline to submit your photos is Sunday, January 30; however, the earlier the better as the pictures will need to go through at least two reviews before being sent off to be printed.  I will let you know if we are able to extend the deadline. Pictures should be submitted via email if possible.  Please contact me if this is a problem and we'll discuss our options. When submitting pictures, please include the name of the condition, issue, or device, and if you want your name to be listed or the photo to be used anonymously (see below).

We would like to represent a wide variety of conditions that are chronic and/or "invisible" in nature.  If you are unsure if your subject is appropriate, please ask me and we'll discuss it.  Most conditions will be relevant; see list of examples below.
Pictures should show the 'truth', but please be tasteful - use common sense, if you wouldn't want to show your grandmother, don't show it to us.

All pictures will be reviewed for appropriateness and space restrictions first by me, then by staff from the University's Office for Health Promotion.  We retain the final decision on which pictures will be included.

Please indicate if you wish to have your name listed as a contributor.  If you so desire, we will use your picture anonymously.  No picture will be individually identified with a name, but we will provide a list of contributors who wish to be included somewhere with the display.

As this is a Catholic University, please understand you may be included in prayer intentions as a participant in the project (whether by name or anonymously).

We will try to let you know if we wish to use the picture again somewhere in the future; however, depending on the logistics of tracking all the photographs, your submission will imply your consent for future use of the image for educational and/or awareness purposes.

No information will be shared (other than your name, if you elect to be listed); your email address and any other identifying information will be kept private.

I will be posting pictures and perhaps video of the display and event online when available.

I will also try to put together a handout or list to go on the school's website of resources and communities students can look into.  If you wish to have a site or community listed, please send me the information so I may review it beforehand.

Don't forget to send a "healthy" or "normal" picture as well (if possible), so we can show the contrast between the face we choose to present to the world and the one we see in our own mirror!

Examples of Ideas for Pictures (this is just a list of IDEAS; please feel free to use other ideas):

  • A profile picture (like the one I use - makeup on, hair done, in a formal suit), contrasted against
  •  the bald spot I usually cover (from Localized Scleroderma), or
  • of myself in bed totally wiped out with oily hair (because I'm too exhausted to wash it) and pale, blotchy skin with swollen parotid glands 
  • A person in an outfit which hides an insulin pump, contrasted against
  • them lifting the clothing to reveal the pump and where it enters their body
  • A person at an average weight having fun and laughing, contrasted against
  • protruding ribs, rolls of fat, hair loss, or brittle nails (for someone with an eating disorder)
  • Scars (from surgery, self-injury, or disease progression)
  • Patches on your skin (such as scaly patches, red marks, ruddy patches)
  • Rashes
  • Mouth ulcers, tongue lesions, severely chapped/sore lips
  • Inflamed joints
  • Discolored or misshapen extremities
  • Hives
  • With-versus-without a prosthetic (such as standing on two legs then the same pose with one fake leg missing)
  • Devices which symbolize something about your life with this condition (for example, I might use an array of eye drops for varying levels of dryness or the denture cream I used to hold in a temporary crown on a tooth destroyed by dry mouth), such as:
  • mobility aides
  • joint support devices
  • testing supplies (such as for diabetics)
  • medical paraphernalia (such as syringes)
  • specialized furniture

COUNTLESS conditions fall in the umbrella of Chronic and /or Invisible Illnesses.  A VERY brief list of conditions follows (this is NOT an exhaustive list by any means):

  • Autoimmune diseases (Sjogren's, RA, MS, Lupus, etc)
  • Diabetes
  • Pain conditions (Fibromyalgia, etc)
  • Chronic Fatigue Syndrome
  • Gastrointestinal diseases (Crohn's, IBS, GERD, etc)
  • Mental health / emotional / behavioral conditions (Autism, Depression, Bi-Polar, Anxiety, Schizophrenia, etc)
  • Cardiopulmonary diseases (heart disease, pulmonary embolisms, Asthma, etc)
  • Cancers
  • Chromosomal disorders
  • Musculoskeletal conditions (Osteoporosis/osteoarthritis, etc)
  • Neurological diseases (Parkinson's, ALS, etc)
Severe allergies (Celiac, other specific foods, etc)

Please send all photos, information, and inquiries to (that's uii [dot] JennyP [at] gmail [dot] com).

Saturday, January 8, 2011

You Can't Blame It All On Sjogren's

So I was standing in front of the kitchen pantry today in my jammies and bunny slippers deciding what to eat for breakfast. I noticed with considerable annoyance that my tummy was feeling a bit upset - again. It had begun the day before and I had chalked it up to a flare up of my IBS. Dang, I thought. I never had problems with irritable bowel syndrome before Sjogren's showed up. Stupid Sjogren's sydrome! Grumble grumble grumble.....

While I was grousing to myself, it suddenly occurred to me that I was holding a bag of dried apricots that was almost empty. It was full yesterday. And that I was chewing a mouthful of.....apricots.

Gee. I wonder if the fact that I had eaten almost a whole bag of dried fruit in 12 hours had anything to do with my busy intestines? Duh. It's too easy to blame any and everything on autoimmune disease and conveniently forget my dingbat tendencies.

Hey! A hangnail! Stupid Sjogren's syndrome....

Friday, January 7, 2011

We Don't Serve Roadrunner In Our Backyard

Image found here

I was bleary-eyed this morning, and decided I needed some serious coffee. So as I was pouring my second cuppa, I looked out in our back yard and saw this:


Is that....a coyote?? Inside what we thought was a coyote-proof fence? After a quick check to make sure that Mags and Lulu were indoors, (They were and completely unaware of the predator in our backyard. So much for their guard dog status) I grabbed my camera and got this very blurry photo. You can just make out his furry little face behind the tree branch.

Mr. Wile E. Coyote spotted me and within seconds had leaped over the fence.

I think he was looking for a schnauzer snack. Hm. I hope he doesn't come back riding an acme rocket.

Thursday, January 6, 2011

Mission: Paint

Objective: To cover vertical surfaces of bonus room with paint. To avoid dripping, glopping, or spattering said paint on horizontal non-drywall surfaces such as carpet, furniture, schnauzers, and selves.

Terese and I are on the job. Yeaaahhh.

Wednesday, January 5, 2011

Tunnel Vision

Image found here.

You should see John these days. He's ripping around our house and life in general like there's no tomorrow, which is a good thing. Over the past month or so, he's been dealing with a series of sinus infections related to his allergies, and he was one sick puppy. After two courses of antibiotics, he was zapped with an intestinal infection on top of everything else, poor guy.

Don't worry, honey. I won't go into the gruesome details. I'm really glad that it's all BEHIND you now. (har har. Really - I'm done. I promise.)

Yup, the energetic John that I know and love is definitely back in the building.

I have a confession to make, however. While he was down and out, I was not particularly sympathetic. Actually, I was......well......kind of weird about the whole thing. This is hard to explain, but I'll try.

As John's sinus infections kept building, he began to tell me how tired he was. He took naps. He found it hard to get out of bed in the mornings, and the pain and fatigue made him downright cranky at times.

Wait a minute. That's MY routine, I thought.

We were coming home from a shopping excursion one day in December and he commented that he couldn't wait to get home to put his feet up and rest for awhile. My response was something nasty like, Well. Welcome to my world! 

Yes. I actually said that out loud. John looked sideways at me and didn't say anything, bless his heart.

It made me realize how self-centered I've allowed myself to become.

I mustered up enough humility to apologize and slap my nursing cap back on. After some follow-up care and yet another round of medications and probiotics, he was back on his feet, thank goodness.

So yes, I was experiencing a serious case of tunnel vision when the poor guy became sick. But what was really weird was my reaction to his becoming well. Weird as in feeling pangs of jealousy. Green-eyed. How weird is that?

I kept telling John that he'd be back to his old self in no time. Just finish those antibiotics, drink plenty of fluids, take your probiotics, and you'll be all better. And he was, just like I promised. I'm happy about that, really I am. It's so good to see him regain his strength and sense of humor again.

But in my heart of hearts, I'm.......well.......I want someone to hand me a bottle of pills and tell me that if I take them, and drink plenty of fluids, and take my probiotics that I will be all better. But of course I know that's not going to happen any time soon.

It's all part of coming to terms with chronic illness, I guess. I am what I am. Others are what they are. The two aren't related.

It is what it is.