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?

The Scent of Ethical Behavior

I've been anxiously poking, prodding and fussing with my first batch of soap. See my previous post, here.

I decided to try my hand at soap making to reduce the amount of chemicals I use and to be a bit more environmentally conscious. Now it appears there may be another reason to concern oneself with soap and all things clean.

A new study published by Psychological Science and led by Katie Liljenquist, assistant professor at Brigham Young University Mariott School of Management, concludes that clean smells promote more ethical behaviors. What scents were used? Windex! You can read the study in it's entirety here.

Just Because it's Fantastic

Inactivity Not the Main Cause of Obesity

Image by irum

Well, there goes my primary excuse for chubbiness.

Dang.

I have had the mother of all excuses for schlepping around in elastic waist pants for the past six years - autoimmune fatigue. I don't want to spend all of my energy resources on the treadmill. And, as everyone knows, lack of exercise is the major cause of overweight issues, right?

This study presented at the 2009 European Congress on Obesity states otherwise. You can read this excerpt and more, here, on Medscape.

The amount of food Americans eat has been increasing since the 1970s, and that alone is the cause of the obesity epidemic in the US today [1]. Physical activity--or the lack thereof--has played virtually no role in the rising number of expanding American waistlines, according to research presented at the 2009 European Congress on Obesity in Amsterdam last week.... "Americans have been eating more; the USDA data clearly show this. But US epidemiological data shows that physical-activity levels haven't really changed all that much. So I think we have to be much more focused on the energy-intake side of the energy-balance equation in understanding what the drivers of obesity are and also in working out what the solutions are," Swinburn commented. "We still need to continue to promote increases in physical activity, because exercise has a lot of positive physiologic benefits, but our level of expectation about the impact of physical activity on weight gain has to be a bit more tempered."

Grand Challenges in Global Health

I'm a Bill fan. No, not the Kill Bill movies (eww), or Bronco Bill.

I'm a Bill Gates fan, more specifically the Bill and Melinda Gates Foundation fan. To be honest, I don't have a PC. My trusty laptop is an Apple.....but most Pacific Northwesterners like myself take some pride in the fact that Bill and his little company, Microsoft, started right here in our neck of the woods. And what a company. I am completely incapable of entering the PC vs Apple technical discussion, but what I am impressed with is what Bill has done with the immense fortune that he has amassed as a result of his ingenuity.

I agree completely with the Gates Foundation's mission: that all lives have equal value. The Foundation goes on to further elaborate on it's mission as defined in it's guiding principles.Their principles can be found on the Foundation's website:

The 15 principles below reflect the Gates family's beliefs about the role of philanthropy and the impact they want this foundation to have. The principles guide what we do, why we do it, and how we do it. While many of them are fundamental to the way we operate, we will remain open to amending them as we grow and learn more about our work.

Guiding Principle #1: This is a family foundation driven by the interests and passions of the Gates family.

Guiding Principle #2: Philanthropy plays an important but limited role.

Guiding Principle #3: Science and technology have great potential to improve lives around the world.

Guiding Principle #4: We are funders and shapers—we rely on others to act and implement.

Guiding Principle #5: Our focus is clear—and limited—and prioritizes some of the most neglected issues.

Guiding Principle #6: We identify a specific point of intervention and apply our efforts against a theory of change.

Guiding Principle #7: We take risks, make big bets, and move with urgency. We are in it for the long haul.

Guiding Principle #8: We advocate—vigorously but responsibly—in our areas of focus.

Guiding Principle #9: We must be humble and mindful in our actions and words. We seek and heed the counsel of outside voices.

Guiding Principle #10: We treat our grantees as valued partners, and we treat the ultimate beneficiaries of our work with respect.

Guiding Principle #11: Delivering results with the resources we have been given is of the utmost importance—and we seek and share information about those results.

Guiding Principle #12: We demand ethical behavior of ourselves.

Guiding Principle #13: We treat each other as valued colleagues.

Guiding Principle #14: Meeting our mission—to increase opportunity and equity for those most in need—requires great stewardship of the money we have available.

Guiding Principle #15: We leave room for growth and change.

Recently, the Gates Foundation announced its recipients of Grand Challenges in Global Health grants:

ARUSHA, Tanzania – The Bill & Melinda Gates Foundation today announced 76 grants of US$100,000 each to pursue bold ideas for transforming health in developing countries.  The grants support researchers in 16 countries with ideas as diverse as a developing an electronic nose to diagnose tuberculosis and using chocolate to help prevent malaria.

I'm posting just a few of the innovative health projects that were awarded funding. You can see them all here.

o   Andrew Fung of University of California, Los Angeles aims to develop chewing gum that can detect malaria biomarkers in saliva;

o   Ranjan Nanda of the International Centre for Genetic Engineering & Biotechnology in India will attempt to create a handheld “electronic nose” that gathers and analyzes breath samples to diagnose tuberculosis;

o   Udantha Abeyratne of the University of Queensland in Australia will equip mobile phones and mp3 players with microphones to record cough and sleep sounds, which could then be screened to diagnose pneumonia.

o   Steven Maranz of Weill Cornell Medical College in New York will test the ability of a compound found in chocolate to keep malaria at bay.

Cheek to Cheek

Pix found here.

I saw an interview last night on television given by George Wendt, the gentleman that played Norm on the comedy Cheers.

He commented on his years as part of the cast by saying that aside from his trademark entrance into the bar, he spent the entire show sitting on his keester. He chortled when he said that his only exercise during filming was to shift from one butt cheek to the other when they needed different camera angles.

Hey, Norm, I know how you feel. There are certainly those days when it seems all I do is shift from one cheek to the other. Except I'm on my couch instead of a barstool. Here's some of my favorite Norm-isms from the show:

Norm: I wish I had time for a hobby.
Cliff: Norm, you've got time to make your own coal.

Norm: Next to Sammy's life, my life has always appeared dull. Then again, next to a barnacle's life, my life has always appeared dull.

Woody: How's it going, Mr. Peterson?
Norm: It's a dog eat dog out there, Woody, and I'm wearing MilkBone underwear.

You can read more about Norm and Cheers here.

The Coat Incident

Lulu is just cracking me up today. First time wearing a doggie coat. More pix here.

We Have Saponification

Want to hear about the latest bee buzzing around in my bonnet?

After writing my last post, I made a resolution to reduce some of the chemicals floating around in my house, on my clothing, and in my body.

Some.

Sure, I know it would be unrealistic to expect myself to adopt a completely organic - nuts - and -berries - type of existence. After all, you can't make an organic lemon drop martini, can you? Or maybe you can......Anyone up for some research and development? In the interest of science and autoimmunity? Now where is my lemon juicer.....

Back to the bees in my bonnet. Chemicals. It seemed logical to begin with one of the first opportunities for chemical exposure every morning: that innocent looking bar of soap sitting in the shower. I went to the Household Products Database by the U.S. Department of Health and Human Services (great resource btw) and checked out some of the ingredients of various items around my house.

This is what I found as ingredients in our bath soap: Fifteen chemicals, not including water. If you click on each of these ingredients, you have a wealth of information at your fingertips, including the Human Health Effects from Hazardous Substance Data Bank. This makes for some interesting reading. Here's what I found on just one of these ingredients, chromium trihydroxide:

Human Toxicity Excerpts: 

A powerful irritant of skin, eyes, & mucous membranes. 

[Lewis, R.J. Sax's Dangerous Properties of Industrial Materials. 9th ed. Volumes 1-3. New York, NY: Van Nostrand Reinhold, 1996., p. 856] **PEER REVIEWED** 

Skin, Eye and Respiratory Irritations: 

A powerful irritant of skin, eyes, & mucous membranes. 

[Lewis, R.J. Sax's Dangerous Properties of Industrial Materials. 9th ed. Volumes 1-3. New York, NY: Van Nostrand Reinhold, 1996., p. 856] **PEER REVIEWED** 

Emergency Medical Treatment:

Life Support:

o This overview assumes that basic life support measures have been instituted.

Clinical Effects:

0.2.1 SUMMARY OF EXPOSURE 0.2.1.1 ACUTE EXPOSURE A) WITH POISONING/EXPOSURE 1) Acute poisoning is likely to occur through the oral route, where as chronic poisoning is mainly from inhalation or skin contact. 2) Oral intake of hexavalent chromium may cause intense gastrointestinal irritation or ulceration and corrosion, epigastric pain, nausea, vomiting, diarrhea, vertigo, fever, muscle cramps, hemorrhagic diathesis, toxic nephritis, renal failure, intravascular hemolysis, circulatory collapse, peripheral vascular collapse, liver damage, acute multisystem shock, coma, and even death, depending on the dose. 3) Acute poisoning by soluble hexavalent salts usually results in local tissue necrosis and may cause severe kidney damage. Acute toxicity after ingestion is a result of GI bleed more so than of systemic poisoning. 4) Following ingestion or external application, kidney lesions can occur. Large doses of chromates may induce albuminuria with desquamated cells, hyperemia, fatty degeneration, and necrosis in the kidney. 0.2.1.2 CHRONIC EXPOSURE A) Although rare, systemic effects on blood, liver, and kidneys from industrial exposure have been reported. Principal toxic effects of chromates from an occupational point of view are exerted on skin, nasal mucous, eyes, larynx, and lungs. 1) Signs and symptoms may include lacrimation, dermatitis, penetrating ulcers, perforation of nasal septum, congestion, chronic rhinitis, polyps of the upper respiratory tract, inflammation of the lung, emphysema, tracheitis, bronchitis, pharyngitis, adhesions of the diaphragm, inflammation of larynx, conjunctivitis, loss of appetite, nausea, vomiting, inflammation of liver or even acute hepatitis with jaundice, respiratory irritations, leukocytosis, leukopenia, monocytosis, and eosinophilia.

And this delightful chemical is only one of fifteen chemicals in that one little bar of bath soap, the lather of which I slather over my whole body every morning. Shudder.

It took a cup of coffee and several minutes for me to even begin to process this information. Eventually, I composed myself and started searching for alternatives to commercially produced soap, which led me to a zillion sites dedicated to a gazillion people who make their own soap. There's a whole soap making culture out there.

Who knew? Certainly not me.

I read for hours, and initially was skeptical after realizing that the first ingredient needed to make soap is lye. Yes. That incredibly caustic stuff that is a main ingredient in drain cleaners. But wait - by the time that hand-make bar of soap hits the shower, it actually does not contain any lye. Why?

Saponification.

Hand made soaps using the cold process combine an alkali - lye - and an oil or fat. Different fats and oils provide varying degrees of lather, bar hardness, and moisturizing properties. A chemical process called saponification combines these two ingredients into an entirely new compound - soap. Viola'!

Of course the process requires careful attention to details such as using a recipe that includes appropriate ratios of lye to fat, having the necessary equipment, and wearing protective gear to avoid eye and skin contact with the alkaline. If you would like to read more about soap making, read this and this.

I was intrigued. If I made my own soap, I could control exactly what ingredients were contained in each bar. Here's my first batch, made from coconut oil and olive oil.

The soap needs to cure for several weeks in order to complete the saponification process and allow the bars to harden completely.

Wonder what other healthy products I can cook up in my kitchen?

Environment and Autoimmunity

Image found on flikr Commons

I just finished reading a book that has terrified me. I'm not easily scared, but The Autoimmune Epidemic by Donna Jackson Nakazawa, published in 2008 by Simon and Schuster, was a white-knuckled read.

This excerpt from the forward by Douglas Kerr MD, PhD, neuroscientist at Johns Hopkins in Baltimore Maryland, summarizes the overall concepts in the book:

You will leave this book with no reservations about the veracity of the conclusions: put simply, there is no doubt that autoimmune diseases are on the rise and our increasing environmental exposure to toxins and chemicals is fueling this rise. The research is sound. The conclusions, unassailable.

Donna begins her book by describing her own experience with autoimmune disease complete with a very good tutorial on the basics of autoimmune disease at the cellular level, then goes on to unveil some alarming statistics:

In 2005, the National Institutes of Health (NIH) released a report called Progress in Autoimmune Diseases Research in which the director of NIH pronounced that nearly one hundred known autoimmune diseases.......now afflict 23.5 million people in the U.S., or one in twelve Americans, and these diseases are now on the rise worldwide - for reasons unknown. The statistics are stark: over the past forty years, rates of lupus, multiple sclerosis, type 1 diabetes, and a range of other autoimmune diseases have doubled and tripled in Western countries around the world.

You can read the NIH report in it's entirety here.

What, then, in this book gives me the heebie jeebies? Statistics such as those found in the NIH report, above,  state that cause of autoimmune disease is 30% genetic susceptibility and 70% environmental triggers. Seventy percent. Those environmental triggers are the stuff of nightmares.

Nakazawa makes the assertion that the bulk of those triggers is comprised of toxic chemicals, heavy metals, and industrial byproducts. The pervasiveness of the those nasties in our daily environment leaves me reexamining every bite of food that I ingest, every cosmetic that I use, and every cleaning agent that I slather on a sponge. This knowledge makes me want to toss out all my teflon-coated pans, and run screaming from new carpets and flame-retardant fabrics. How pervasive, you ask? She cites numerous studies that revealed escalading trends in increased environmental and industrial toxins found in healthy individuals' blood all around the world. But even more jaw-dropping was that these toxins were not limited to adults:

In 2005, a set of findings emerged that shocked toxicologists around the world. Researchers working through two major laboratories found an alarming cocktail of 287 industrial chemicals and pollutants in the fetal cord blood of ten newborn infants from around the country, in samples taken by the American Red Cross....Shortly after, investigators in the Netherlands turned up similar findings: they discovered an array of chemicals found in household cleaners, cosmetics, and furniture in the cord blood of thirty newborns.

She goes on to make an excellent point: that in spite of the overwhelming amount of evidence linking toxic waste and chemical products to autoimmune disease, science has yet to coin a phrase that identifies these agents as AI triggers. So Nakazawa coins her own term : autogen, AI's version of the word carcinogen in relation to cancer. Makes sense to me. By naming our enemy, we have made the first step in conquering it.

In Chapter Three, Nakazawa discusses clusters of autoimmune epidemics found in the US and looks closely at a specific cluster of autoimmune disease activity located in and around Buffalo, NY, coincidentally also the site of multiple toxic waste sites. Her story begins in the mid 1980s, and after literally decades of investigation, documentation, study, and nagging by a group of locals, clean up on the contaminated site did not begin until 2006:

Validation, much less help, didn't arrive until the number of people sick and dying with lupus in the area had already reached such critical mass that the cluster could no longer be ignored. For the many years that PCBs, lead, and TCE sat smoldering on these three sites, Buffalo was a disaster just waiting to be revealed.

Want to know if your community has multihazardous  sites: a combination of hazardous, toxic, and/or Superfund-classified substances and chemicals? Go to the United States Environmental Protection Agency's website, scroll down to MyEnvironment, and type in your zip code. You'll find a wealth of information specific to your city or area.

Unlike a good horror movie, this book does not provide a comforting all-is-well conclusion. Instead, Nakazawa discusses ongoing research and makes an effective argument for the need for more exhaustive research, especially research directed specifically on environmental triggers. All is not well. If unchecked, rates of autoimmune disease will continue to rise without an effective prevention and treatment program.

She offers a chapter of suggestions of ways that we can attempt to shield our immune system from this seemingly never-ending onslaught. I felt as though this chapter was anti-climactic, in that the advice offered was strategies that most of us would think were simply common sense: to eat organic foods, avoid using unnecessary chemicals in our home and gardens, avoid eating any kind of processed foods, and to avoid use of most cosmetics, among other tips.

The book seemed to spend 90% of it's pages telling us that the sky is falling, and indeed it probably is, environmentally speaking. But I would sleep much better at night if I had a better idea of exactly how to prop up my own little patch of blue.

Perhaps the value of this book is simply in raising awareness of several concepts: that autoimmune disease deserves an enormous increase in funding for research, that the effect of toxic elements introduced into our environment has global and devastating health repercussions, and that action is needed now to stem this Autoimmune Epidemic.

Read it.

Changes

So I've been goofing around with new templates for Reasonably Well.

Sorry.

Schnauzer Sisterhood

Maggie and Lulu think that they are the center of my universe. And, actually, most days they are. Poor Sam thinks that they should just leave him alone.....

In the interest of focusing Reasonably Well more specifically on autoimmune issues, the diva doggies now have their very own site. It's called Schnauzer Sisterhood, and you can visit them here.  

Are you two satisfied? Good. Now go outside and play. 

A Good Day

Finally, I can truthfully say that after months of whineybutt behavior, I have had a Good Day. With capital letters. 


I woke up after a restful night and knew within minutes that today was going to be a goodie. So I grabbed my camera and headed out the door to make the most of it. 


The leaves are changing. Awesome. 

I splurged on a new pair of shoes. 

I experimented with my own version of frijoles. 

 Watch out, world. I'm back.

The Skinny on Autoimmune Skin

Image found here.

Unfortunately, I have had several opportunities to learn more about autoimmune related skin conditions recently, and I've been just itching (sorry) to share some of my newfound knowledge. A discussion about skin needs to begin with a brief anatomy review. Human skin is comprised of three layers. The excellent chart below is from the University of Maryland Medical Center.

epidermis	The epidermis is the thin outer layer of the skin. The epidermis itself is made up of three sub-layers: stratum corneum (horny layer) This layer contains continually shedding, dead keratinocytes (the primary cell type of the epidermis). The keratin, a protein formed from the dead cells, protects the skin from harmful substances. keratinocytes (squamous cells) This layer contains living keratinocytes (squamous cells), which help provide the skin with what it needs to protect the rest of the body. basal layer The basal layer is the inner layer of the epidermis, containing basal cells. Basal cells continually divide, forming new keratinocytes and replacing the old ones that are shed from the skin's surface. The epidermis also contains melanocytes, which are cells that produce melanin(skin pigment).
dermis	The dermis is the middle layer of the skin. The dermis is made up of the following: blood vessels lymph vessels hair follicles sweat glands The dermis is held together by a protein called collagen, made by fibroblasts (skin cells that give the skin its strength and resilience). This layer also contains pain and touch receptors.
subcutis	The subcutis is the deepest layer of skin and is also known as the subcutaneous layer. The subcutis, consisting of a network of collagen and fat cells, helps conserve the body's heat while protecting other organs from injury by acting as a "shock absorber."

There's a lot going on in that thin layer of skin. What seems to be a just a fleshy layer of body wrapping paper is actually the body's largest organ, with a total surface area of about 20 feet. The skin protects the body from infection, helps regulate body temperature, and facilitates our senses of touch, heat, and cold. In its layers are glands that secrete body oils and sweat, and hair follicles.

About two months ago, I developed a healthy crop of some unhealthy looking spots on my skin. I called my doctor's office to schedule an appointment. What do the spots look like? asked the appointment secretary.

Um. I wanted to use medical terminology specific to skin splotches, but for the life of me, I couldn't remember any of those strange words. It's useful to know some of this terminology when reading dermatology literature. Here's an abbreviated list. You can read a much more detailed description in Skin Lesion Nomenclature from the University of Wisconsin found here.

A skin lesion, or patch of abnormal tissue, can be identified in two ways - by a description of the actual lesion, and by the way the lesions are arranged on the skin. Here are just a few of the most commonly used terms.

Lesion descriptive terms:

Macule: a small area of the skin that has a changed color and is perfectly flat.

Papule: a small solid raised lesion

Vesicle: a small raised and clear fluid filled lesion.

Pustule: a vesicle filled with pus.

Lesion patterns:

Annular: in the shape of a ring

Discrete: lesions that remain separate from each other

Clustered: lesions that occur in a group

Confluent: lesions that overlap or run together

Some skin conditions are autoimmune diseases that arise specifically in the skin. You can read more about these conditions, such as alopecia and vitiligo, here. Other skin problems can be caused by autoimmune diseases that affect the body as a whole, such as Sjogren's syndrome, sarcoidosis, and Lupus. You can read my previous post about sarcoidosis and it's skin rash, erythema nodosum, here.

SLE, or systemic lupus erythematosis can cause the skin to develop a malar rash - a red rash over the cheeks and nose often described as a butterfly rash - or discoid rash with raised, reddened disc shaped patches. This Lupus Foundation of America article is a great resource to learn more about SLE, cutaneous lupus erythematosis, and subacute cutaneous erythematosis, all forms of Lupus.

Sjogren's syndrome also can significantly affect skin. According to the Sjogren's Syndrome Handbook edited by Steven Carsons, M.D. and Elaine K. Harris, the most common manifestation of skin problems associated with Sjs is dryness of the skin. The authors recommend strategies such as the use of unscented body creams that do not contain alcohol, humidifying the home environment, limit the use of moisture-robbing soaps, and avoid lengthy showers and baths.

Aside from dryness, Sjs can cause other cutaneous (skin) issues. This info was taken from a very in-depth article about Sjogren's syndrome on the Medifocus Health site: *update 5/16/10 - Medifocus is now not allowing free access to this guidebook. It is available for purchase online* Grr. 


Estimates of the percentage of Sjogren's syndrome patients who experience skin problems range from 10-40%.Cutaneous vasculitis (inflammation of the blood vessels in the skin) is one of the most characteristic extraglandular manifestations of Sjogren's syndrome and is thought to be due to lymphocytic infiltration into the walls of the blood vessels. Typically, small blood vessels are affected more than large ones.

The most common forms of cutaneous vasculitis seen in Sjogren's syndrome patients (typically patients who have anti-Ro and anti-La antibodies) are:

• Palpable or nonpalpable purpura (purple spots on the skin after blood "leaks" underneath; similar to a bruise) which can cause raised, red skin lesions
• Urticarial lesions (hives)
• Erythematosus micropapules - red spots

Patients with cutaneous vasculitis also may develop non-vasculitic lesions including:

• Petechiae - pinpoint dots
• Photosensitive cutaneous lesions - lesions which are sensitive to light (also seen in patients with systemic lupus erythematosus)
• Livedo reticularis - marbled appearance of the skin
• Lichen planus - small itchy pink or purple spots on arm and/or legs

• Thrombocytopenic purpura - purple areas on the skin related to a decrease in blood platelets
• Vitiligo - white patches on skin due to loss of pigmentation

Cutaneous vasculitis (as well as other forms of vasculitis - see below) is considered to be a significant prognostic indicator with the development of lymphoma and mortality. A large 2004 study of 558 Sjogren's syndrome patients diagnosed with cutaneous involvement reported that 58% of the patients had cutaneous vasculitis and showed a higher incidence of:

• Peripheral neuropathy - damage to the nerves that supply the arms and legs characterized by burning, tingling, numbness and pain
• Raynaud's phenomenon - a circulatory disorder caused by insufficient blood supply to the hands and feet
• Renal (kidney) involvement
• Presence of autoimmune markers such as antinuclear antibodies (ANA) and rheumatoid factor
• B-cell lymphoma

Other skin problems that may be experienced by patients with Sjogren's syndrome include:

• Dry skin - affects up to 55% of patients with Sjogren's syndrome (xerosis)
• Itchy skin
• Burning skin - may be experienced in up to 20% of patients with Sjogren's syndrome
• Skin rashes - may be experienced in up to 10% of patients with Sjogren's syndrome
• Raynaud's phenomenon - may appear before the development of symptoms of dry mouth and dry eyes by many years. It is estimated to occur in up to 30% of patients with Sjogren's syndrome and is usually of minor clinical significance.

Treatment of the above conditions can vary and depend on the severity of the condition. Successful management may include the use of topical agents, such as ointments and moisturizers, avoiding UV rays, and use of medications as prescribed by your physician. You can read more about treatment of skin problems related to Sjogren's syndrome here and here.

T Shirt Philosophy

So it's the weekend, and I really don't feel like posting anything profound or medical or sensible. I've been sipping my coffee this morning paging through the reams of gift catalogues that stuff my mailbox daily now that the holidays are within striking distance.

Even though I've only made it through a half of my morning mug, I'm conscious enough to appreciate the humor on this year's crop of gift t-shirts. Here's a sampling:

I'm confused.......wait, maybe I'm not.

It's not gossip. It's RLS, Restless Lips Syndrome.

I'm retired. You're not. Nah Nah Nah Nah Nah

I don't have A.D.D., it's just that....OH LOOK - A BUNNY RABBIT!

National Sarcasm Society.......like we need your support.

When I Want Your Opinion, I'll Remove The Duct Tape

Don't worry about what people think. They don't do it very often.

I started out with nothing and I still have most of it left.

E = F flat : The Musical Theory of Relativity

Chronologically Gifted

"Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think". - Christopher Robin

So far, this is the oldest I've ever been.

and my favorite so far:

I'm so busy....I don't know if I found a rope or lost my horse.

Self Medication

FYI:

Freshly baked chocolate cake with Auntie Barbie's special vanilla frosting has amazing curative/narcotic properties, specifically for 52 year old female patients with bladder infections.

Just sayin'.

Pathogen Eviction Notice

Image found here

To whom it may concern:

Landlord, aka Julia, does hereby deliver notification to any noxious bacteria, virus, pathogen, or any infectious creature with the exception of healthy gastrointestinal flora:

That as of this day, October 8th 2009, eviction notice is hereby served by Landlord aka Julia.

Said infectious agents are required to depart instantly and remove with them any toxins or metabolic byproducts of said infectious agents.

This means you, nasty creature that has caused my urinary tract infection. Owwww...

I've been taking prednisone, and my doctor thinks that it may have masked early symptoms of a UTI, which is why some nefarious germs are causing havoc. Thank goodness for antibiotics. Go get 'em, guys.

Personal Health Records

Over at the Health2.0 conference today, one of the speakers addressed the use or, more accurately, the under utilization of personal health records, offered by biggies such as WebMd, Microsoft Healthvault, and Google Health.

What's a personal health record? A PHR is a record of your health history, medications, and other therapies including alternative health practices and vitamins and supplements used. How valuable is it? It appears that the PHR is only important if it is accurate and easily obtained.

Methods to create and maintain a PHR vary widely.

Some PHRs are offered as an online service, such as the ones mentioned above. These PHRs are not accessible to your physician, and is only accurate if the client is willing to enter every bit of data and keep the information current. For some, this is a daunting task and one that is easily forgotten.

Others, like mine, are also online but are administered through my HMO. I can go online, use my health record number and a password, and view my medical condition list, my medications, my lab results, records of previous appointments, and upcoming appointments. I can - and frequently do - make appointments online and communicate via email with my doctors for non urgent problems. It lists my care providers and contact information for each of them. I can also refill most of my prescriptions online and have them mailed to my home with no shipping costs.

I have an elderly friend that has devised a PHR of her own. It's not high tech or difficult. She simply takes a folder and a spiral notebook with her to each of her appointments. In the spiral notebook, she keeps a chronological list of appointments and a brief summary if anything important occurred. She has a face sheet on the spiral that lists her health problems, which are considerable, and her medication allergies. She tucks anything that doesn't fall into that category in the folder and periodically sifts through those papers and discards those that are outdated. Brilliant! Her family knows where this folder is in her home, and understands it's value in case of an emergency.

Personally, I am very grateful that my PHR is handled by my HMO. I seriously doubt that I would be disciplined or energetic enough to go online to update my health record. My visits to my doctor always drain my precious energy, and with the accompanying brain fog, after I dragged myself over to the computer, who knows what actually would be recorded?

I have a suspicion that anyone younger than me might feel differently, however. It probably would be pretty easy to grab your blackberry or iPhone and punch in data right in your doctor's office, if the client were motivated by some significant reasons to document their care. If this said client were like my adult kids, however, they wouldn't feel motivated to do so. They're young and healthy and think that they are invincible and will live forever. Ah, to feel that way again....

My husband worked in the Information Technology department for a large clinic awhile back. He changed jobs in 1996, but before he left, was working diligently to devise what they were calling back then a paperless chart. The US Department of Health and Human Services was granted legislation also in 1996 - the Health Insurance Portability and Accountability Act, or HIPPA - that attempted to address privacy issues surrounding these new medical records. This remains a significant issue. Who can know how much and in what detail about my health? These are big questions whose answers require ongoing discussion and refinement.

Bottom line? There's no doubt that for most of us with any significant medical issues, some documentation of our conditions, allergies, medications and therapies is extremely important. How this is achieved remains to be determined.

Sjogren's Syndrome is Not Cute

Image by mdcarpe01

My friend Emily was watching me watch Lulu. That rascal puppy had just shredded a roll of toilet paper and left mountains of white fluff all over the bathroom and laundry room. Emily offered to clean it up, but I told her to wait. I really want to get a picture of this, I said as I went looking for my camera.

Ems laughed and asked if there was anything that this puppy could do that would make me angry with her.

Well, no, there isn't. Because she's so stinkin' cute that I can't stand it.

Even though my kids would probably deny it, they got away with all sorts of naughtiness when they were little and cute too. (Not that they're not cute now. Sorry guys.) But I went looking for my camera more times than I can count as those sweet little kids' faces looked at me over every kind of mischief possible. Like the time that my three year old daughter bolted from our church pew one Sunday and took a victory lap around the altar during a service, her brand new patent leather shoes tapping loudly on the marble floor with every little step. Every grandmother in the congregation stopped me after Mass to pat her on the head. One even told me that my daughter's performance that morning added another element of "pure joy" to the service. Daughter smiled innocently, playing the adorable cherub part perfectly. What a player.

Cuteness evokes an Awwww response that will grant the said cute offender the ultimate Get Out Of Jail card. Lethal cuteness renders most people helpless and unable to work up even the most feeble Now Stop That attempt.

See, this paralyzing cute effect is what is seriously lacking in autoimmune disease. There's nothing sweet or photogenic in any of it's effects. Nobody croons How cuuuuuuuute! as I gulp down a mountain of pills, pick away eye crusties, or slather handfuls of moisturizer on flakey dry skin every morning. Nobody smiles indulgently at me as I accumulate dozens of empty water bottles wherever I go, or as I trot to the bathroom at routine intervals. Not surprisingly, no squeals of enjoyment are responses to my brain-fog babbling. Funny how my spotty erythema nodosum is never referred to as a boo-boo and accompanied by a pat on the head. Did poor Julia-kins get a nasty boo boo? Yes she did, oh yes she did!

I could deal with autoimmune disease much better if I could look in the mirror and see any kind of cuteness linked with Sjogren's syndrome.

Maybe if I strapped on a brand new pair of patent leather shoes.......

Simple Solutions

Image by LittleMan

This week, the Health2.0 conference is delving into the symbiotic relationship between technology and health care. I'm sure that the exhibition hall is jam packed with knee-slapping well, goooollleeee displays.

For me, technology has vastly improved the quality of my communications with my doctors. My primary care physician and my rheumatologist, both my lifeline to success in dealing with my autoimmune disease, are most easily contacted via email. I can count on them to read my emails and respond within an hour or two, saving me a trip into the clinic (and the cost of a co-pay). When I do actually see them in a face to face appointment, we can focus on the bigger issues since some of the minor ones have been dealt with electronically.

Thinking about the value of all this gee-whiz technology brings to mind one of my earlier posts. If only all solutions in healthcare were this simple:

So we've been having problems with our computers over the past month.

I was very surprised at this since I have several very tech-savvy members in our family. As in That's What They Do For A Living savvy.

I know my strengths, which definitely do not include anything related to computer science, so I just brewed a pot of coffee and sat back to watch. It was very entertaining.

The problem-solving process involved delving deep inside the mysterious innards of laptops, towers, modems, routers, and wireless paraphernalia. Passwords were unlocked and settings were changed which involved acronyms and languages that I will never be able to comprehend. A internet provider technician was summoned to bring his van-full of yet more equipment to help diagnose the problem.

I marveled at the incredibly complicated discussions that took place with several people huddled in our study. Impressive looking meters and gauges materialized and were attached, read, and moved outdoors. Several telephone calls were made to tech support and endless conversations carried on over the speakerphone in cryptic computer-ese.

I heard furniture being moved, dogs banished from the study, indistinguishable phrases muttered under the breath, and several exasperated sighs.

I poured myself a second cup of coffee. This was getting good.

It has been years since I assisted in a surgery, but I felt that I might add some benefit to the situation by mopping brows and offering to pass instruments. Surprisingly, nobody took me up on my offer. As a matter of fact, I was ignored completely. Imagine that. Mildly insulted, I headed back to my perch on a kitchen stool and nursed my third mug of coffee.

At long last, we had a tenuous connection to the internet established. The connection was temperamental, however, and would be firmly in place for a few hours, then would mysteriously vanish. Another week of diagnostic frustrations ensued. More calls to the experts were made.

At last, my genius husband had an inspiration. Let's just look at the simplest, most basic things, he said.

He replaced a cable. A simple, inexpensive, grey cable found at Wal-Marts everywhere.

Presto chango! The heavens opened and the internet flowed copiously. Continuously. Extravagantly. And there was much rejoicing in John and Julia's house. I'm sure the neighbors were concerned about the racket.

Wouldn't it be great if all those complicated things in life could be fixed that easily? I think about all the complex diagnostics that my body has been subjected to over the last five years. I have had endless scans, scopes, x-rays, conduction studies, and blood samples drawn and evaluated. My medical chart must read like War and Peace. I need a rolodex to keep track of all the doctors that I see. I would love a simple fix to my autoimmune system.

I want a new Wal-Mart grey cable.