Who, Me?

America's Most Wanted: Case K9

Perpetrator: Lulu. AKA Puppy Poopsie Doop, AKA Baby Furball, AKA TP Trasher.

Do not be fooled by this deceptively guileless schnauzer face. Behind this fuzzy facade lies a ruthless toilet paper shredding maniac.

She is dangerously skilled in feigning innocence and repentance for her vicious attacks.

Accomplices: include Maggie, AKA Mag The Moo Moo, AKA Mini Mag.

Approach this dangerous duo with caution.

Reward for capture and incarceration offered by Charmin.

National Institutes of Health Pioneer Awards 2009

The National Institutes of Health announced the recipients of the 2009 Pioneer awards on September 24th. These prestigious awards are described by the NIH as " designed to support individual scientists of exceptional creativity who propose pioneering – and possibly transforming approaches – to major challenges in biomedical and behavioral research. "

Among the eighteen recipients of this award is Hilde Cheroutre, Ph.D, whose focus of research is autoimmune disease and whose grant amount is $4.7 million.

Hilde Cheroutre, Ph.D.
La Jolla Institute for Allergy and Immunology

Hilde Cheroutre, Ph.D., is a full member of the Division of Developmental Immunology at the La Jolla Institute for Allergy and Immunology. She received a Ph.D. in molecular biology from the State University of Ghent, Belgium, in 1984. Cheroutre’s research focuses on the mucosal immune system and includes the development of immune cells, immune regulation, and mucosal immune memory. She is using her Pioneer Award to identify genetic mutations and defects in the early development and differentiation of immune cells, which may be the basic underlying cause of autoimmunity. Being able to detect such defects early in life could allow the prevention or treatment of autoimmunity before it escalates to a point where medical intervention is no longer an option. Cheroutre will also design medical intervention strategies to compensate for the defects and potentially prevent or treat autoimmune diseases.

You can read more about Dr. Cheroutre and her work here.

Lethal Laundry?

Yes. I know that I should be folding this load of laundry instead of goofing off on my computer.

I was sitting in our veterinarian's office the other day with a squirming Lulu on my lap, waiting for her next set of puppy shots. A doggie magazine was lying open on the table next to us, so I tucked the wiggling puppy under one arm and took a look at the article facing me. On the magazine page, in bold letters, was a warning to pet owners not to allow their pets any access to fabric softener dryer sheets.

Interesting, I thought. I didn't have time to read further when the vet entered the exam room and my drama queen puppy began howling even before any needles were unsheathed.

Once home and Lulu placated with puppy treats and her favorite chew toy, I decided to try to find out more about dryer sheet dangers, since my laundry room is Lulu's suite until she's house trained.

A quick search on the net located the article, found here, in Dog's Life Magazine. I was horrified to read that dryer sheets contain chemicals, cationic detergents among others, that can be harmful and even fatal to some animals. The Merck Veterinary Manual goes on to describe the effects of exposure to these compounds on pets:

"Signs of oral exposure include oral ulceration, stomatitis, pharyngitis, hypersalivation, swollen tongue, depression, vomiting, abdominal discomfort, and increased upper respiratory noises within 6-12 hr of ingestion. Affected animals frequently have significant fever and elevations in WBC counts. Systemic effects include metabolic acidosis, CNS depression, hypotension, coma, seizures, muscular weakness and fasciculation, collapse, and pulmonary edema. Dermal irritation, erythema, ulceration, and pain are possible with dermal contact. Conjunctivitis, blepharospasm, eyelid edema, lacrimation, and corneal ulceration may be seen secondary to ocular exposure. Lesions can include GI, ocular, or dermal irritation or ulceration."

I had my box of dryer sheets wrapped up and in the garage garbage can within minutes. On my way back into the house, another thought struck me: If this stuff is so toxic to pets, what's it doing to me? I have used fabric softener in every load of laundry cleaned in my house since my first washer and dryer purchase in 1981.

Another quick Google search with the words autoimmune + cationic detergents yielded a zillion results, most from alternative medicine sources making the assertion that use of these chemicals has a distinct and direct link to disease. Some seemed outrageous, others blatant ads for products, but still others proved very intriguing. I think that I have found yet another source of very interesting material to delve into.

I would think that since some of the world's best researchers have yet to decipher the cause of autoimmune disease, it's unlikely that a direct cause and effect can be proven between chemical triggers and autoimmunity at this point in time. But what an interesting concept. I have read repeatedly that autoimmunity is thought to be brought on by a combination of genetic tendency, possible infection, and an environmental trigger.

It will be fascinating to learn more about what some of those environmental triggers may be. In the meantime, I don't believe that anyone will be permanently scarred by static cling due to the absence of dryer sheets in our house.

Just let me know if I have a sock stuck to the back of my sweater this winter......

Who Knew?

Like the big '80s hair? While going through some pictures, I unearthed this one from about 1986 or so.

Yes. This does indeed prove that I am older than dirt.

There's something very cool about this photo, though. When it was taken, I didn't realize then that at the same time, another woman was rocking her two little girls - same ages as mine - two thousand miles away. In another ten years, we would all be wreaking havoc in the Pacific Northwest together.

We even had the same stylin' perm. Yikes.

Just goes to show that you never know what the future has in store for you. A pain-in-the-butt autoimmune disease, yes. But also good friends and good times.

Men and Autoimmune Disease

Image by lhumble

Girls.

The time has come to admit that we are not an exclusively female club. It's time to let the guys into our autoimmune tree house, boy cooties and all.

While it is true that the ratio of women to men is 9:1 for Sjogren's syndrome and SLE, a recent report published in September 2009 by the Annals of Internal Medicine spurred interest in AIs in men after it was revealed that John F. Kennedy dealt with significant health issues stemming from autoimmune disease:

At the age of 43 years, John F. Kennedy was the youngest man ever elected president. Throughout both his campaign and hispresidency, he was portrayed as the epitome of youth and vigor. In fact, he had the most complex medical history of anyone to occupy the White House. The recent opening of his White House medical records has provided researchers greater insight into the multiple medical conditions that afflicted Kennedy. A recent review of these records, coupled with other available sources, allows new understanding of his health history that can now be explained in the context of a unifying autoimmune endocrine disorder.

.......In summary, John F. Kennedy had many medical conditions during his lifetime. Addison disease was diagnosed when Kennedy was 30 years of age, and he was found to have hypothyroidism when he was a senator. The coexistence of autoimmune adrenal disease and hypothyroidism is consistent with APS 2......Despite his many medical conditions as well as his recurrent back problems, John F. Kennedy managed to convey an image of health and vigor that masked the true state of his health to the U.S. public.

John F. Kennedy may have had autoimmune polyendocrine syndrome type 2, or APS2, which may include Addison's disease and hypothyroidism among other problems. You can read more about APS2 here.

While APS2 is relatively rare, other autoimmune diseases found in men are not. Note the ratio of male/female in ulcerative colitis, diabetes mellitus, and myocarditis in the graph below.

Graph above found here, from the CDC.

Why are autoimmune diseases so sharply divided between the sexes? This remains a very difficult question and the definitive answer has yet to be found. This National Women's Health Resource article offers a few explanations, most based on sex hormonal differences between men and women:

Most researchers agree on one thing: sex hormones must be involved. For instance, symptoms of multiple sclerosis and rheumatoid arthritis tend to improve during pregnancy, when levels of estrogen and progesterone are high. They also tend to improve when women take oral contraceptives, which moderate hormone fluctuations.²Autoimmune thyroid disease also may improve during pregnancy, then flare after delivery as postpartum thyroiditis.

Lupus, however, might sometimes flare during pregnancy while some other autoimmune diseases show no hormone-related disease changes.²

Another theory suggests that fetal cells from earlier pregnancies that remain in a woman's blood for years after giving birth may play a role in some diseases, particularly those that first develop or get worse after pregnancy.²

We also know that many immune cells have receptors for sex hormones, says Dr. Whitacre. When hormones bind, or attach, to these immune cells, they can affect the cell's behavior. In fact, women tend to have a stronger inflammatory immune response than men, and inflammation is a key component of many autoimmune diseases.²

"So it's that very close relationship with hormones that provides a clue that they play a big role in autoimmune diseases," says Dr. Whitacre.

Regardless of cause, what is undeniable is that significant numbers of men also face enormous challenges as a result of their autoimmune diseases.

How many? According to the American Diabetes Association, of the 23.5 million people who have diabetes, now thought to have an autoimmune cause, 12 million are men. The National Digestive Diseases Information Clearinghouse estimated in 2001, 408 cases of ulcerative colitis and Crohn's disease occurred per 100,000 people in the United States, approximately half of which were men. These numbers reflect only two AI diseases, and only in the United States, just a small sliver of the world's population.

So even though women do largely outnumber men in most other areas of autoimmune disease, the fact remains that men do experience all AIs, which should be a reminder to us all: Everyone struggling with these difficult diseases deserves support, education, and the right to be treated with dignity.

Got that girls?

Now be nice. To everyone.

Go To Know

Thanks to Tami for reminding me about the excellent educational resources available through the Sjogren's Syndrome Foundation. The foundation sponsors several yearly patient seminars which are worth serious consideration. The following information can be found on their website:

The SSF’s Live, Learn & Share patient seminars are the best way to learn more about Sjögren's syndrome. Over the years, these seminars have helped thousands of patients and their family members gain a better understanding of Sjögren's syndrome while giving them an opportunity to meet fellow Sjögren's patients.

Each seminar features healthcare experts who address an array of Sjögren's syndrome topics, while also allowing time to answer your questions.

If you want to be your own best patient advocate by gaining a thorough understanding of all the key aspects of Sjögren's syndrome, then these seminars are for you!

Saturday, September 26, 2009	Dallas / Fort Worth Patient Seminar DFW Airport Marriott South Fort Worth, Texas (one-day program) click here for more information
Saturday, February 20, 2010	Tampa Patient Seminar Tampa Marriott Westshore Tampa, Florida (one-day program)
Friday, April 9 - Saturday, April 10, 2010	2010 National Patient Conference San Francisco Airport Marriott Burlingame, California (two-day program)

I had the opportunity to attend one of the national patient conferences in Phoenix. It was an amazing experience not only to learn, but also to meet and share experiences with other Sjoggies. Hm. I could see a weekend in San Fran this spring.....

Puppy 101

Say what? Come down? No freakin' way!

My puppy Lulu has learned to go up stairs. Unfortunately, she can't come down the stairs. Yet.

Prednisone Equals Chocolate Cake

Doesn't it feel weird to be on larger doses of prednisone?

I'm on a burst and taper regime right now - meaning that I take a large dose for several consecutive days, then take gradually decreasing dosages on a schedule.

For me, prednisone is one of those drugs that have some kind of side effect - always. I have never taken this medication without experiencing some kind of physical sensation attributable to the drug; unlike my thyroid meds and estrogen replacements which just chug along in the background reliable and undetected.

When I'm on prednisone, I feel antsy. I make lists. I buy Christmas presents online. I envision grand redecorating schemes for the house and make

John move furniture. Then make him move it back again. I sort through stuff in the house and donate it to Goodwill and wonder the next day if I should go and buy it back.

It's hard for me to sleep when I am taking prednisone. So I stay up late at night reading, flopped down on my belly with my elbows propping me up, chin in hands, for hours and hours. My favorite late night reading place has become my generously sized bedroom closet. It's the softest carpet in the house, and is reassuringly close to John yet far enough away that the light in the closet doesn't disturb him. Maggie wedges herself next to me as I read and will frequently sigh and yawn, then look at me as if to say, "You really should be in bed, crazy lady."

I crave sugar when I'm taking prednisone. Not the usual Hmmm, something sweet would be tasty right now kind of craving, but I'm mixing up powdered sugar and butter and milk and slathering it on anything edible kind of craving. I daydream about thick slabs of chocolate cake and monstrous m&m cookies. I rummage through the kitchen pantry and devour stale packages of leftover graham crackers. We had dinner at Terese and Greg's house last night and in one sitting, I polished off two pieces of apple spice cake, three scoops of vanilla bean ice cream, and more cookies than I care to remember.

I put on weight when I'm on prednisone, but I just can't imagine why.

You can read more about the side effects of prednisone here and here.

Delectable cake recipe found on Southern Living.

Erythema Nodosum is Not Hives

Although I do look just like this, it's not me. Image found here.

Well.

After yet another trip to see my doctor, I was informed that I do not have hives. See my previous whiney-butt post about my skin here. I had an appointment with Dr. S., my rheumatologist yesterday, and as we munched chocolate and pumpkin swirl bark, she gave me some news that almost offset the bliss induced by great candy. Oh. My. Gosh. Great candy.

Actually, these big red blotches on my shins, forearms, neck, and chest are actually an inflammatory type of skin condition called erythema nodosum. How nice of them to appear and provide yet another learning opportunity.

Things That I Have Learned About Erythema Nodosum:

1. EN is caused by an inflammation of the panniculus, or the fatty layer that lies just beneath the dermis portion of the skin. Now there's a new word to casually toss out at your next cocktail party.

2. The lesions caused by EN appear as reddish painful lumps located on the shins, but also can appear on the arms, chest, face and neck. Gee. Sounds familiar.

3. EN can be caused by many conditions, the most common being medications, certain types of infections, pregnancy, inflammatory bowel diseases, and sarcoidosis, an autoimmune disease. Sometimes EN can appear all by itself. Now isn't that special.

4. EN can be a very short-term condition lasting from a few weeks to months, or may become chronic, meaning long-term. As in years and years and years. Yikes.

5. EN is treated by first determining and treating the underlying condition. In my case, Dr. S. strongly suspects that I have acquired yet another member of the autoimmune family - sarcoidosis. She prescribed oral prednisone for me in a burst and taper dosage. You can read more about sarcoidosis here.

6. EN is an irritating, good-grief-what's-all-over-your-arms-and-legs?!, keep Julia up at night scratching, geez not more prednisone! type of condition.

You can read more about stupid annoying Erythema Nodosum here.

I Didn't Do It

I had a request from a reader to re-publish this post from last December, and I'm happy to oblige:

Do you ever wonder if there is a reason why we Sjoggies were given our disease? I am not referring to the why me? grief experience that everyone goes through when their life is impacted because of changes to their body.

No, what I am asking myself these days is - Do I have some kind of life lesson to learn in my experience with autoimmune disease? Is there some cosmic reason why my white blood cells have gone wacko? The question isn't Why do I have to deal with disease?, but rather, Why is my disease in me? How did it get there?

I know that one best-selling author says that autoimmunity, a self-destruct mode of sorts, reflects some kind of manifestation of a poor self concept, and the body responds to it's own destructive thoughts, and in doing so, damages itself in response to our thoughts and beliefs.

Yikes.

Author and metaphysical lecturer Louise Hay's book, You Can Heal Your Life, goes into great detail to explain the mind-body relationship. She not only defines the mind-body relationship in terms of the mind's ability to cure or improve our physical and psychic problems, but goes so far as to claim that "limiting thoughts and ideas are the cause of illness".

In other words, according to Hay, I am responsible for my illness because I have thoughts and beliefs which are causing my body to attack itself, and the lesson to be learned from this experience is to heal myself by changing my values and ideas; to love myself without limitations, to accept myself as I am, to affirm my value and worth as a person. She explains exactly how one would go about making those internal changes in her book and accompanying workbook.

I began to read the book with a slightly skeptical attitude, but I determined to explore her concepts with an open mind. The author felt she was speaking with extensive first-hand experience about her concepts. Louise had suffered a difficult life, including an abusive childhood, a failed marriage, and then cancer. She believed that by adopting the use of daily affirmations, visualization, psychotherapy, and nutritional changes, she cured herself of cancer and healed her emotional scars. Sounded pretty impressive, I thought.

I settled in to read the book, but I lasted all of one chapter before the hackles on my neck began to rise. It was difficult for me to accept without question her concept of the cause of disease, especially since I have been educated in the medical field and look at disease and the body from a scientific, cellular, physical, and chemical perspective. After some thought and continued reading, I was willing to consider that the mind/body connection could potentially be powerful enough to change the body at that cellular and chemical level.

I took a deep breath and continued reading. I scanned the upcoming chapters and became increasingly uncomfortable. My discomfort was not caused by disagreement regarding the power of a focused, positive, healing attitude in good health. In working with patients over the years, I have seen that a positive attitude and emotional support is powerful medicine for whatever ailments that a patient may have. I wholeheartedly agree - a mind focused on positive and healing thoughts can only bring about positive changes.

What concerned me was her theory that laid an enormous amount of guilt on an already stressed individual - that all the physical problems encountered by those with disease were brought on by their own mental and spiritual failings. I have brought autoimmune disease into my body by the concepts and beliefs that I hold about my own body. Shame, shame, shame on me!

What a mixed message Louise sends. A person can cause their own disease, and with this realization comes yet more self disapproval, shame and guilt. What kind of a morally deficient person would loathe themselves to the extent that they bring disease into their body?

But not to worry - Hay offers solutions in the form of uplifting phrases that when repeated often enough and with enough sincerity, will not only make you feel better about yourself, but will be better. And kinder. And also more successful in your job, your personal life, and your finances. And will ensure that anyone can live happily ever after.

I'm sorry, Louise - I just will not accept this load of guilt.

I will accept the responsibility for my Visa balance, the batch of cookies that I just burned, the absence of doggie obedience training and the resulting doofus dogs in our house, my pudgy butt and thighs, but I will not shoulder the responsibility of creating my autoimmune disease. I know in my heart of hearts that I did not create this monster. I know that I have a reasonably sane, accepting opinion of myself, and that as a matter of fact, I personally think that my ego could use a healthy dose of humility therapy instead of frequent self-congratulation and adoration.

No. I will not call my disease a self-inflicted wound.

However, I will accept the responsibility to live my life in the healthiest way that I know how and to follow my doctor's instructions regarding medications and other health practices. I will educate myself about autoimmune disease, and I will be responsible to seek others who are struggling with the same issues that I am. I will seek to treat myself with respect and kindness.

I will get through this. We all will - together.

Navel Gazing

Image found here.

Speaking of brain fog strangeness...

When I'm in a flare, I like to flop down on the grass in my backyard. I stretch out on my back, hands behind my head, and let the coolness of the earth drain my aches and pains away. Ahhh.....

I like to imagine that an invisible, infinite line begins at my belly button and heads up into the sky. I wonder what else that line would intersect as it headed out into the galaxy and beyond.

You already knew I was weird, didn't you?

No?

Well, now you do.

My Brain is Being Held Hostage by Sjogren's

I seem to always have a flare of my Sjogren's symptoms as each season changes. Wish I knew why.

At any rate, the leaves are turning, and my fall flare is here. For me, in spite of the increased fatigue and joint pain, the fact that my brain turns off is one of the most frustrating symptoms of a flare. How does that switch get flipped??

John and I were listening to a conversation yesterday. We were discussing the subject a few hours later, and I listened in slack-jawed disbelief as John filled me in on details that completely escaped my attention.

Hello? 911? I'd like to file a missing organ report. Yessir. My brain has been kidnapped.

I remember the first time that I experienced brain fog while at a choir rehearsal with Terese. I have been able to read music for 40 years, but on that night, I looked at my music and realized with horror that nothing made sense. Even though the episode only lasted a few seconds, it left me feeling terribly frightened.

Several years, many discussions with my doctor, and a zillion more episodes of "Julia's Missing Brain" have gone by. I have looked at the dashboard without a clue how to put my car in drive, have wondered how to brush my teeth when the batteries of my power toothbrush died, (up, down, up, down, silly girl), I've given up balancing the checkbook when I'm in a flare, and have wandered around countless parking lots looking for my car. I've lead a whole row of people into the wrong pew at church because I couldn't remember where we all started, have stared stupidly at my cell phone wondering what our home phone number was, and remember being thankful at the ease of simply sliding a plastic card through a machine rather than actually counting out dollars and change when making a purchase.

Luckily, over the years I have also realized that a foggy brain does eventually work. If I can put aside some of the paralyzing angst and simply remember to breathe and be patient, the mental wheels begin to slowly turn again.

I need to keep reminding myself of this during the challenges of this flare.

You can read more about brain fog in this article on the Sjogren's World website:

"Brain fog is often experienced as problems with memory or difficulty focusing or problems with processing information or numbers or with paying attention. It is an experience of feeling not quite ‘all there’ mentally. While some people may feel they are becoming demented or developing Alzheimer’s disease, this generally is not the case, in that this is a different type of ‘dementia’ that is not likely to land a person in a nursing home for chronic care. In fact, brain fog is a relatively common condition that can be brought on by a variety of factors."

Sensitive Sjogren's Skin

Image found on Wikimedia Commons.

I have hives. No, not the honey bee kind.

I have those yukky raised, red, itchy skin kind of hives, and I'm trying my darndest to figure out why. But with Sjogren's dry and easily offended skin, who knows what the cause may be?

This particular batch of nasties showed up about three weeks ago, just about the time that I had spent considerable time in the sun, AND was eating all sorts of foods that I have been avoiding for several months, AND was in a flare of other Sjogren's symptoms, AND our little tomato garden was at it's zenith in producing bushels of tomatoes. Meaning that I had consumed about my body weight in fresh tomatoes over the course of three days.

It seems to me that my skin reacts much more quickly and more dramatically to irritants in the last few years. The question is - is my cranky skin a result of autoimmune disease? Or aging? Or new allergies?

My doctor, when consulted, said that sometimes it's hard to tell what causes allergic type reactions similar to my hives. After making certain that my skin outbreak didn't resemble the typical autoimmune disease specific rashes such as the Lupus facial rash - like this - and making sure that my hives weren't symptoms of a more serious allergic reaction, she commented that hives such as mine can appear and depart mysteriously.

She suggested a few strategies:

- I know that I don't tolerate foods containing wheat well. I don't have celiac disease but wheat foods tend to upset my GI system. I have been sneaking cookies and other breads and pastries for the past few weeks. This has to stop. Dang.

- Keep diligently applying that sunscreen and hypo allergenic moisturizer to keep skin protected from the sun.

- Try taking antihistamines, such as Benadryl or Claritin for a few days, keeping in mind that these products will cause my eyes to feel even more dry.

- Apply topical hydrocortisone cream if itching becomes a problem.

- Avoid taking hot showers, which irritate the skin. Cool baths might soothe irritated skin. Also avoid scented soaps and body wash.

- Keep a diary and note changes in hives as well as strategies used and food intake.

You can read more about hives on the Medlineplus National Institutes of Health site here.