Too Good Not To Share

Disclaimer: This post has absolutely nothing to do with Sjogren's syndrome or autoimmune disease.

My kids and their friends, all twenty-somethings, were discussing dating. One of them commented about another's good fortune in working in an industry where most of the co-workers were of the opposite sex. The reply just cracked me up:

"Oh yeah. The odds are good.......but the goods are odd...."

My, my. A little picky, are we?

Image by ozndrl

Noise Noise Noise

Our television signal comes from one of those mini-satellite dishes. To view TV from the dish, you have to run the signal through a special receiver, and wouldn't you know it, awhile back the receiver died. It was still under warranty, which meant that the manufacturer shipped us a new one without charge. Wahoo!

Unfortunately, that also meant that I had to wait for the new one to arrive. Not wahoo.

So, I took all my stuff, meaning laptop and pillows and doggies and moved into another room to camp out there for my daily naps, where we had a small TV that only received a few local channels.

No big deal, you say?

But, but, but.........I always watch.......and then after that this comes on.......and if nothing else I always have the news channel on because what if something big happened somewhere in the world.......

Well, hey now. (Julia slaps herself upside the head). Could I be somewhat addicted to that never ending source of babble and images? Me? What? No, never.

Heck, yeah.

That television wasn't even worth turning on since I don't do soap operas or Sesame Street these days. Instead, during my down times, I read or actually napped. And remarkably, I became accustomed to and even began to enjoy the quiet as I went about my daily routine. After a few days I noticed that after being unwillingly placed in a quiet environment, when I did go to a place where there was incessant noise of any kind I responded to all that stimulus by feeling that my nerves were on edge. I felt impatient, even a bit anxious. When I escaped to quiet, I felt much calmer and refreshed.

It was an interesting environmental change experiment forced upon me by broken technology. But in retrospect, I could see how my response to noise and what some physicians call "noxious stimulus" - love that phrase - has evolved over that past years.

Mark it up to age, or menopause, the Sjogren's-caused tinnitus ringing in my ears, or whatever, after a lifetime filled with noise during every waking moment, I have found myself tolerating attention-demanding stimulus less effectively. My ability to triage the importance of all that noise has decreased over the last few years. Or, to state it more accurately, I find myself blurting, "WILL you turn that stupid [TV/stereo/dogs barking/power saw/lawn mower/bathroom fan/vacuum cleaner/video game] OFF????"

I wish I could say that as a result of this little week-long episode I have adopted a zen like quietness as the norm in our house. That new receiver works too well and brings in too many tempting channels to remain turned off indefinitely. But I do find myself being more particular about what kinds of noise I surround myself with. Yes, I am becoming much more selective.

I think The Price Is Right brings some meaningful value to each day, don't you? Come On Down!!



Image of television above by miamiamia

Flu Vaccine and NSAIDs

Has your doctor recommended that you get the H1N1 vaccination or the seasonal influenza vaccine? If so, as you roll up your sleeve, consider this:

If you are a needle wimp, like I am, you may not want to take non steroidal anti inflammatory drugs (NSAIDs) after the injection to reduce the irritation and discomfort at the injection site. A recently published study from researchers at the University of Rochester Medical Center found that fewer antibodies were produced in response to a vaccine when NSAIDs such as Tylenol and Advil were administered at the same time as the vaccination.

You can read more about this study here. Image by LittleMan

Undie Organization

Image found here.

Whenever I do mundane and boring tasks such as laundry, I like to pass time by thinking about something completely goofy. A girl's gotta do what she's gotta do to keep herself entertained, after all. Here's this morning's brand of weirdness: How does the rest of the world organize their socks and underwear?

Dang, I really need to get out more. Or start putting something medicinal in my morning coffee.

John and I each have designated two specific drawers in our dressers - one for socks, the other for underwear. John made his underwear organization strategy based on this line of thinking: that when you wear socks and undies, the socks are located underneath the undies. Therefore, sock drawer should be on the bottom, with the underwear drawer above.

Here's my logic: underwear goes on my bottom. Hence the undies drawer is on the bottom, with the sock drawer above.

I like to think that my line of reasoning is more creative because I am making a choice based on two meanings of the same word. Bottom - bottom: get it? Get it?

Even though this momentous decision was made 29 years ago, it seems particularly appropriate these days. John spends much of his day upright with his socks actually running around under his underwear, while my socks spend a great deal of time propped up on a pillow with my bottom plopped on the couch.

OMG. I just thought of something. What if the drawers were arranged side by side??

And don't even get me started on whether socks should be paired by folding, knotting, or turning inside out.

This is too much for my foggy brain. I'd better go lie down......

Before it all Went Wrong: Normal Immune Systems

Image from wikimedia commons

I spend a great deal of time trying to make sense of what my over-active immune system is doing to me. So I spend a considerable amount of time reading medical studies and other in-depth articles aimed at physicians and other health care providers.

I find the scientific literature that defines and discusses autoimmune disease to be complicated and often confusing.

That's because our immune system is complicated and often confusing.

I know that the immune system's responsibilities include recognizing and responding to potentially harmful agents such as bacteria, viruses, and foreign molecules, (see Medline Plus definition here), but the methods by which our immune system accomplishes this seem so complex that when I attempt to make sense of it all, I end up thinking that my name is Alice and that I have fallen down a rabbit hole.........curiouser and curiouser!

Luckily for me, I have some located perfectly sane sources by which I can make some sense of it all. Here's a condensed version of what I have learned. And it doesn't require one to eat part of a mushroom or drink from a mysterious vial of questionable liquid.

We know that in autoimmune disease certain elements of our immune system mis-identify parts of our bodies as foreign, which triggers our immune system to kick into high gear and attack those parts of our bodies and thus we deal with autoimmune disease. But what actually does our immune system do when this happens, either in a normal response or in autoimmune disease? Before one can understand abnormal immune function, it is important to some understanding of normal immune anatomy and physiology.

Our immune system has two basic parts: the innate system, and the adaptive system.

Innate immunity is the body's first line of defense against invaders. It is present at time of birth, and unlike the adaptive system, does not change its response to repeated exposure to a given infection. Once a pathogen, or disease causing agent, penetrates the skin and mucous membrane barrier, specific cells and proteins rapidly move in. These innate responders are not fussy. They will cheerfully attack anything that matches a general pathogen-associated molecular pattern, or PAMP. PAMPs are molecules that are found in certain patterns required for survival of certain viruses and bacteria. Put simply, the cells involved in this attack force look for this molecule pattern and then attack it. When we are born with a normal immune system, our innate system is pre-loaded ready to recognize not just one PAMP, but thousands. Parts of this innate system include:

• Skin and mucous membranes as an anatomical barrier;
• Phagocytic cells: specific white blood cells that bind to pathogens and then engulf them. The word phagocyte in greek literally means to "devour cells". Phagocytes include neutrophils, monocytes, and macrophages;
• White blood cells that cause inflammation: basophils, mast cells, and eosinophils;
• Natural killer cells that target tumor cells and cells infected by viruses;
• Specific molecules such as complement proteins and cytokines. 

The innate immune system is responsible for the inflammation, swelling, and fever present in an infection. The innate response does not "learn" or change with repeated infections of the same agent. You can read more about the innate immune system here, and here, and here.

The adaptive immune system is the second of the two basic parts of immunity. Unlike the innate system, the adaptive system is not present at birth, and remembers - or is changed by - repeated infections of the same agent. It is a much more specific response to an infectious agent and takes time to develop. Key players in this system are specialized white blood cells or lymphocytes. This excellent description of lymphocytes and their responsibilities can be found on the Merck Manual site:

"Lymphocytes enable the body to remember antigens and to distinguish self from nonself (foreign). Lymphocytes circulate in the bloodstream and lymphatic system and move into tissues as needed.

The immune system can remember every antigen encountered because, after an encounter, some lymphocytes develop into memory cells. These cells live a long time - for years or even decades. When these cells encounter an antigen for the second time, they recognize it immediately and respond quickly, vigorously, and specifically to that particular antigen. This specific immune response is the reason that people do not contract chickenpox or measles more than once and that vaccination can prevent certain disorders."

There are several flavors of lymphocytes - B cells, which are formed in bone marrow and produce antibodies, and T cells, which are produced in the thymus, and once activated, operate seek and destroy missions for foreign and abnormal cells. Both B and T cells are subdivided into other types of cells with specific functions. To learn more about these specific cells and their complex processes, read more here, here, and here.

Abnormal T cells are thought to be responsible for initiating autoimmune disease when they fail to recognize the body's own tissues as "self", and begin their seek and destroy missions on the body's own organs. You can read more about these errant T cells here.

Howling Good Halloween

Did y'all have a good Halloween? We celebrated with bloody slush, complete with cranberry blood clots:

Had our first slice of pumpkin pie for the season:

But the best item of the evening by far was the schnauzer pumpkin carved by Greg:

Sjogren's Syndrome Can Be Ho-Hum

Image found here.

It seems like just yesterday when John and I lived such busy lives that we would have to sit down together with our calendars and schedule uninterrupted time together. Sometimes, these dates would mean simply going for a quick walk together, others, a full-fledged hot dang put on your dancing shoes and hire a babysitter we're going out on the town outing. Every day seemed jam-packed with stuff. Kids and work and school and church and activities and lessons and laundry and housework and all the stuff that all young families do. John and I would sometimes say half-seriously to each other that we looked forward to being bored someday.

Well, guess what? That day, at least for me, is here.

It has sneaked up on me. Yes, it did. It has been five years since I hung up my stethoscope, yet early on in my illness, I was focused on just learning to survive and adjust with my new challenges. I still had kids living at home. Life's pace definitely had slowed considerably but still......I was learning about autoimmune disease, and those kids, even as young adults, had a way of livening up the day.

Now that they are all adults with lives of their own in a city three hours away, I find that I wish I had never even kiddingly hoped to be bored. Oh, thanks to cell phones and texting and facebook and instant messaging, the kids keep John and I close and very involved in their daily lives. And I love those weekends that we all are able to spend as a family.

But I miss the doors slamming and my sprits rising as I hear the kids coming and going. I miss cooking big pots of soup that will be eaten in one sitting, and knowing that when I bake pie, it had better be pies plural not singular since one is never enough when the whole crew is at the table. I miss going through the pockets of their blue jeans as I do laundry and laughing at the strange stuff I find. I miss the phone ringing off the hook and knowing that in all likelihood, the call is not for me. I miss asking, "where are you going and with whom and when will you be home? I'll be waiting up."

I miss the challenges and feelings of accomplishment of a job well done that came with working. I miss the camaraderie of being part of a working team and the opportunities for socializing. I know full well that I am a nosy person, and working provided endless opportunities to dive head-first into fascinating life stories and interesting situations.

How did all that change so quickly to leave me here, today, twiddling my thumbs?

I can honestly say, that before AI entered the picture, I never remember feeling bored. I may have occasionally felt frazzled, thought there were not enough hours in the day, worried that I wasn't providing enough quality time for each of the children and my husband, frustrated by conflicts and challenges at work....but I never felt bored. As a matter of fact, the word bored was a dangerous word for any of my kids to utter, because if they said it, I happily gave them lots and lots of ways to not be bored, as in chores around the house and yard.

The pace of John's life has not changed as drastically as mine, thank goodness. When he steps in the door in the evening, he's met with three enthusiastic doggie greetings and an equally enthusiastic wife. All the details of his day that previously didn't get the attention that they deserved are now fascinating to me. The poor guy is forced to recite a litany of his schedule of meetings, what he had for lunch, and any office scuttlebutt, which he does with patience and good humor, bless him.

He's not the kind of guy to ever elaborate or exaggerate. Sometimes, I wish he would. Those after-work stories could really use a little spicing up. Gee, maybe he could perfect his juggling skills for me. Or work on some other equally entertaining talent.

I guess my point here is that I've come to realize that it's time for me to take my own advice that I used to give the kids. Bored is as equally dangerous of a word for me as it used to be for my kids - meaning that it's my responsibility, not anyone else's, to seek and find rewarding experiences to fill my days.

I'm working on it.

ME/CFS

This video, from the ME (Myalgic Encephalopathy) Association, does a great job illustrating the challenges  of living with an invisible illness. ME is also known as Chronic Fatigue Syndrome.

You can read more about the ME Association here.

While ME is not considered an autoimmune disease, the feelings of frustration and challenges of living with an invisible illness are the same.

Love that Spelt Bread

Like a lot of Sjoggies, I just don't tolerate foods made with wheat. Um, I'll bet it wouldn't take much imagination to guess what symptoms they induce. I made an earlier promise not to discuss flatulence frequently on Reasonably Well, and I'm sticking to it.

I make it a practice to avoid eating wheat except for special occasions, and when I do, I always regret the indulgence. So does everyone else around me.

So I've been trying various wheat-free products. I have to say that the Organic Newman Os wheat free - but not gluten free - are dangerously tasty and in my opinion are an even up trade for Oreos. Rice based pastas are great, if I'm careful not to cook them too long. Once drenched in spaghetti sauce, these pastas are delicious. And don't even get me started on this gluten-free brownie mix by The Cravings Place. Man....

What I miss the most is honest to goodness home made bread. I've made home baked bread ever since I was just a kid when my mom would have me help her rip out fragrant golden loaves twelve at a time. I've tried various bread mixes labeled as gluten free, and have been disappointed in the results. Purchased loaves, especially those sold in the frozen foods section of grocery stores, taste gummy and flavorless.

I've been on a mission to find an acceptable wheat free bread recipe, and I think that tonight I may have come close. I do tolerate spelt flour, even though it does contain some gluten. Many people who have wheat intolerances but not true celiac disease can enjoy spelt products without problems. Spelt is an ancient grain with archeological evidence of its use as early as the bronze age. You can read more about spelt here.

I used a fairly simple recipe, found here, that calls for  a combination of whole and white spelt flours, honey, sea salt, butter, water, and yeast. I chose to use organic versions of these ingredients. In mixing, this bread dough definitely had a much different texture than conventional wheat flour. As recommended in the recipe directions, I tried to avoid using too much flour in the kneading process. I chose to use less sea salt, 1 1/2 teaspoons rather than 2 as listed, which was probably not a good decision. I would definitely add the full amount when making this bread in the future.

The loaves looked and smelled wonderful. The loaves do have a more crumbly texture, which is probably due to less opportunity for gluten fibers to form to create that spongy elasticity of a great white bread. Still, eaten while still warm and spread with butter and strawberry jam, it was absolutely delicious. Mmmmm..........

Sjogren's Syndrome Loves the Autumn

Image by daddypete

For the last week, it's been cool, overcast, and rainy.

Perfect.

I'm serious. As much as I love summertime here in the Pacific Northwest with months of clear blue skies and warm sunny days, as a Sjoggie, I'm always glad to see summer turn to fall. I love the beautiful vibrant colors of autumn, but I also welcome those grey cottony clouds moving back in.

Call me weird. It's been done before.

All summer long, I struggle with self control: I want to be outdoors. I want to rush headlong into the sunshine without having to slather endless amounts of sunscreen, or slap on my ugly floppy hat, or cover up with my white long sleeve shirts. I go through zillions of bottles of eye drops and guzzle reservoirs of bottled water that could supply an entire city. When I'm indoors, I want to be out. When I'm outdoors, I feel as though I should be in. I spend all sorts of time gearing up to go out, and within a short time, I'm overheated and nauseous and splotchy and cranky. I end up sitting out beautiful summer days indoors drowning my sorrows in gallons of ice cream.

Then autumn arrives bringing cool temperatures, rain, and shorter days. The rainy season begins to saturate the air with blissful moisture. Ahhhh. Suddenly it feels cozy to wrap up in a sweatshirt and of course legs are covered with bluejeans. Heck, I even break out my socks. Out comes the crock pot and we start eating comfort foods like beef stew and chicken noodle soup. I can eke more energy out of a day if I don't have to spend precious efforts trying to keep cool or out of the sun.

Pumpkins start showing up on porches everywhere along with drippy umbrellas and soggy shoes. It seems that my day isn't complete without sipping a steaming mug of coffee next to the fireplace. I page  through trusted recipe books watching it rain and think ahead to the holidays.

Ain't life grand?