Herbals To Avoid

Image by bura

A member of the Sjogren's World forum asked an excellent question today. She reported that after taking an herbal supplement, she began to flare. Could the two things be related, she wondered? Several other folks commented that they had had the same experience.

After a quick search online, I was surprised to find that yes, certain herbal supplements that are used to boost the immune system can definitely cause problems with autoimmune diseases. Among these are echinacea, the algae spirulina platensis, aphanizomenon flos-aquae, ginsing, and alfalfa.  Makes sense - we certainly don't need to make our immune system any busier than it already is. 

A chart published by the McKinley Health Center, here, seems to be a good resource for evaluating herbals. This article and this study reinforce the herbal no-nos. I learned that even seemingly healthy and innocent foods such as camomile tea can interact in a dangerous way with a long list of medications, seen here. 

Yet more reinforcement of the don't take it before you check with your physician rule. 

The Darnedest Things

Image by chumney.

While grocery shopping last week, I browsed the toothpaste aisle. We dry-mouthed folks tend to check out the newest oral care products with the same enthusiasm as technophobes looking at the latest iPhones. 

"Whoa! Biotene makes a dry mouth toothpaste in cinnamon? Where can I score a tube, man?"

You should have seen us at the Sjogren's conference in Phoenix this year. We Sjoggies packed the exhibition hall shoulder to shoulder as we queued up for samples of new eye drops, mouth lozenges, and dental floss. If it could have been possible to conjure up enough saliva, we all would have been drooling over the latest and greatest products promising moisture everywhere we could possibly want it. 

I thought I had seen it all, and thought of everything that I could possibly do to keep these old teeth clean and shiny, but last week, in our very own local grocery store - there they were. Right there in front of me on the shelf. Probably have been around forever but somehow I missed them. 

Battery powered toothbrushes! Brilliant! And cheap! Mine cost $4.95 and it came with an extra set of batteries. 

I love my new toothbrush. I feel almost like I'm cheating every time I power it up. It's pathetic, but at the end of the day, I can flip the switch on that baby and not have to do anything but stand there and spit out the toothpaste foam. 

Gotta love modern miracles. 

Prevention Buzz

Prevention Buzz  will be adding Reasonably Well as a contributor. You can read my blog there at: Prevention Buzz. 

Chin Up!

image by flareXII

After reading this  Arthritis Foundation article which looked at musculoskeletal disorders of the upper extremities (MSD - UE) and their relationship to computer posture, I am adding yet another item to my Julia Do list. I have resolved to change my position when I spend time at the computer.

My laptop has allowed me to lounge on Couch while surfing the web, catching up on e-mail, or blogging. I can now see that positions like these are really bad news for musculoskeletal health. 

The article discusses a study which evaluated postures and behaviors associated with typing on a computer keyboard. Here's the findings of the study:

After analyzing the data from 19 different postures from all 42 people, only one factor demonstrated good ability to predict who had an MSD-UE: neck flexion angle ≥20 degrees. This means that the participants who had their heads pointing downward had a higher likelihood of having some form of upper extremity problem. In fact, all participants who identified themselves as having a neck disorder kept their heads in a downward position at ≥20 degrees. Furthermore, 90 percent of those who did not have a neck disorder kept their heads positioned more upright, with a flexion angle of 20 degrees or less.

I think this means that I need to abandon my typical chin-down method of typing. What?! Sitting in a chair at a desk? Who does that anymore?

Who? Me, I guess. 

Dinner Table Dynamics

Image by chancaca

Last night, John and I went out to dinner with some good friends. It was a very satisfying, delicious meal, and I'm sure I exceeded my recommended calorie allowance for the whole day in that one sitting.  

We were all sitting back in our chairs exclaiming how none of us could possibly eat another bite, when the waitress showed up at our table. "We have wonderful desserts," she said. She didn't do a big sales job, she didn't wave samples under our noses, she didn't even show us a picture. She simply offered them to us. 

A very interesting process began, one that I have been part of as long as I have been ordering my own meals at restaurants. I call it the Dessert Dance, and the first step is to pretend that one needs to be persuaded into indulging.

Terese and I began by laughing and protesting. Gosh, there's no way we could have dessert. I gave John a sidelong look.  Do you want something sweet? I couldn't possibly......Honey, are you having something?.......What kind of pies did you mention?...Well, maybe if you are getting one......

John and Greg didn't even bother to pretend they weren't interested, calories or no calories. John said firmly, "Bring me the blackberry pie. Warmed, and with ice cream". Greg stepped up next and ordered the creme brulle with equal decisiveness. 

The next phase passed quickly. The opportunity for restraint came and then left instantly. I gave myself permission to indulge and never looked back. 

Interestingly, it never occurred to me to ask John if we should split a dessert, not even remotely. Even though my waistband was already snug, I heard the words chocolate cheesecake and I was a goner. Terese succumbed last by ordering warm peach pie.

When everything arrived at the table, forks flew. When the four of us go out to dinner, it is an unstated rule that anything on the table is fair game for sampling. "Ummmm.......Try the ice cream.......You've got to have a forkful of this.........Great cheesecake.........How do you like the pie?"

The frenzy ended pretty quickly. Not a crumb remained on anyone's plate. Which brought me to the final step of the often-repeated experience: unbuttoning my waistband and promising myself that I'll find willpower and resolve the next time. Dance over. 

Exercise Advice

Image by Hortongrou

This article, found in Science Daily, discusses motivating people with chronic illness to exercise. (It's interesting that I am reading it while lounging on Couch. Oh brother.)

 Here's an excerpt: 

ScienceDaily (July 27, 2008) — It is common knowledge that regular exercise supports physical and mental well-being. Despite this and recommendations from health care providers, the majority of patients with chronic illnesses remain inactive. In a new study, University of Missouri researchers found that adults with chronic illness who received interventions focused on behavior-changing strategies significantly increased their physical activity levels.

In contrast, interventions based on cognitive approaches, which attempt to change knowledge, beliefs and attitudes, and are most commonly used by health care providers, did not improve physical activity. 

“The information that physicians are giving patients isn’t working. Patients are not motivated when they hear ‘exercise is good; it will improve your health.’ What works is providing patients with simple, action-orientated strategies to increase their activity levels,” said Vicki Conn, professor and associate dean of research in the MU Sinclair School of Nursing.

Behavior strategies include feedback, goal setting, self-monitoring, and stimulus or cues. Self-monitoring, any method where participants record and track their activity over time, significantly increased awareness and provided motivation for improvement, Conn said.

Conn also goes on to comment that 12 minutes per day of physical activity is enough to get a patient started toward better health. I could do that. Maybe. 

Quote For Today

Image by Yuman

Weaving The Web of Wellness

Be grateful, especially for family; create ways to be together and express love.

Laugh more, especially at myself.

Give my gifts while pursuing my dreams.

Ask more questions; every person is my teacher.

Honor those whose shoulders I stand on; create daily reminders and tell more stories.

Cook more for others; then spend more time at the kitchen table.

Push the limits, just some of the time.

Remember always, what is - IS!

- from You Don't Look Sick! Living Well With Chronic Invisible Illness by Joy H. Selak and Steven S. Overman, MD, MPH.

Fence Guardians

photo by kliverap

We have a long row of the prickliest roses that you have ever seen. It borders the outer side of our cedar fence. I go out to prune them in the early evening, since I just can't tolerate much sunshine these days. 

There's a great story about those roses: 

We were getting a little frustrated with neighbor kids, whose aim with their winter sleds left something to be desired. We'd hear - smack! bam! hee hee! every time a new batch of snow fell and the kids' sleds veered off course on the hill and hit our fence. 

Not wanting to be the neighborhood grump, instead of yelling, John waited until spring, and went off to the nearest plant nursery. He announced that we needed a nice row of rose bushes outside our fence. His criteria for choosing a rose bush? Big, nasty thorns. That was it. Color? Variety? Floribunda or tea rose? Who cares?

He threw them in the ground, and they have been blossoming profusely ever since. And, not surprisingly, the neighborhood kids' steering ability has blossomed as well. We have not heard smack! bam! ouch! even once. 

Taming The Child

A few days ago, I confessed in a post that my inner child is a spoiled brat. 

(Hi. I'm Julia, and I have a naughty inner child. "Hi, Julia.")

I am still looking for methods to control the little stinker, and in my quest for strategies, came upon a delightful site called Perpetual Kid - Entertain Your Inner Child. 

Eau de Play Doh can be found here. I can't vouch for the site or it's products but this made me smile. 

What may be more useful in taming my inner brat, however, is a book titled The Beck Diet Solution - Train Your Brain To Think Like A Thin Person, by Judith S. Beck, Ph.D. The most obvious effects of having a disobedient inner child running amok is, for me, a ballooning waistline. Probably like many people trying to control their weight, I have read a whole library's worth of diet books. It seems that none of them have been effective.

(Hi, I'm Julia, and I am a diet plan addict. "Hi, Julia.")

What interests me about this book, is that it is not a diet. Instead, Dr. Beck urges readers to choose any healthy dieting method, and then utilize the concepts in the book to help them to be successful. Dr. Beck's tools are based on cognitive behavioral therapy, a method of talk therapy used globally in treatment of many psychological disorders such as depression. Interestingly, CBT was developed by Dr. Beck's father, Aaron T. Beck, MD. 

The program suggested involves a six week structured plan, in which sabotaging behaviors are changed by learning new thought processes. It also requires journaling daily, and utilizing specific reminder tools. 

It looks like a promising read. 

Drug-Induced Lupus

Image by svilen001

Anyone with a chronic disease can tell you - expect anything. And everything. True to form, I experienced some new developments in my autoimmune disease recently.

I had noticed a few new symptoms over the past month: increasing fatigue, joint pain and swelling in my hands and feet, and an elevated temp. I chalked it up to another flare, but had a nagging feeling that this flare felt differently than others that I have had. 

A trip to see Dr. S., a zillion blood tests, and a few x-rays later, I had a new addition to my diagnosis list, although hopefully it will be a temporary one. Dr. S. told me that my problems are probably due to drug induced lupus. 

I barraged my doctor with questions. What's DIL? Will it go away? How do we know that this is "just" DIL, and not Systemic Lupus Erythematosis? What do we do now? 

My rheumatologist patiently explained how she arrived at this diagnosis. First, I had been taking a medication for the last year that is known to be associated with DIL. Secondly, it is common for patients with a DIL to develop joint issues in their hands and feet. Most importantly, however, a blood test, the ANA, had become positive, while other labwork indicative of SLE remained normal. 

My treatment will be simple: discontinue the medication and monitor my symptoms for improvement. 

I felt reassured even further when I went online to the Lupus Foundation website, and read their information:

Drug-induced lupus erythematosus (DILE or DIL) is a side-effect of long-term use of certain medications. Specific criteria for diagnosing drug-induced lupus have not been formally established. However, some symptoms overlap with those of SLE. These include:

• Muscle and joint pain and swelling
• Flu-like symptoms of fatigue and fever
• Serositis (inflammation around the lungs or heart that causes pain or discomfort)
• Certain laboratory test abnormalities.

Once the suspected medication is stopped, symptoms should decline within days. Usually symptoms disappear within one or two weeks. Drug-induced lupus can be diagnosed with certainty only by resolution of symptoms and their failure to recur after stopping the medication.

By definition, drug-induced lupus is "cured" merely be stopping the offending medication. However, the complete disappearance of symptoms can sometimes take months, and the disappearance of abnormal autoantibodies may take a few years.

After recovering from DILE, some people may develop this syndrome again if not enough time has passed before they again begin to take the same medication. It would be best to avoid a medicine that has previously caused drug-induced lupus.

You can read a more detailed description of DIL in this article, found on eMedicine. 

Inner Child Care

picture by vancity197

I am told that everyone has an inner child, and this child represents that side of themselves which is playful, creative, uninhibited, and innocent.  

I want one of those. My inner child is a brat. For example:

Me: OK. I know that eating lots of sugar and fat will only make life more difficult for me, so I am going to push this shopping cart right past the giant M&M cookies in the bakery.

Inner Child Me: Grabs a dozen cookies and runs to the checkout. Chomps one cookie before they are paid for. Greets cashier with a mouthful of crumbs. 

Me: Time to get up, Julia. 

Inner Child Me: "No way, dodo head!" Burrows under covers and goes back to sleep.

Me: Look at this great yoga DVD! 

Inner Child Me: Throws self onto Couch and digs in heels. "I'm not moving and you can't make me. Nanner nanner nanner." Sticks out tongue. 

What is a person to do with an undisciplined naughty inner kid? Put it in time out? How would that work? Withhold an allowance? (Better not mention that one to John...). And we're not going to consider spanking. That would be just plain weird. I may have to consider bribery if all else fails. 

In the meantime, I'm going to have to settle for a stern warning. So listen up, you young stinker inner child: I have had enough, young lady. I will not tolerate any more shenanigans, Missy. Do you hear me? Don't make me stop this car! 

That ought to do it. 

Diversion

Image by brainloc

My rheumatologist and I are in the process of evaluating a drug's effectiveness for me. I discontinued taking the medication, and my doctor advised me to closely evaluate my response. Oh, brother. As I commented in an earlier post:  

Ever since I had to quit work, I have been doing nothing but focusing on myself. My entire day is booked almost completely with the word ME in every time slot. There was a time when I would have thought that this would be a perfect existence. Several of my friends have commented that they would love to change places with me.

 Let me tell you honestly, focusing entirely upon yourself stinks. Especially when you are a chubby 50 year old with a strange hairdo and a disease that saps your energy when you least expect or want it to. 

I am just not interesting enough to warrant attention 24/7.

If I allow myself to become uber focused on my body and it’s symptoms, I become very strange and hard to live with. Every pimple, ache, or pain seems to be magnified 200% simply because, in the absence of anything else to focus on, that pimple turns into a monstrous problem. I become anxious and fretful, and even crankier than usual. It’s not pretty.

I was trying to think of ways to continue to objectively monitor my symptoms without morphing into a self-absorbed hypochondriac, and formulated a plan: I would spend a few minutes evaluating  any changes in my body, would jot it down in a journal, then move on immediately to a different task. 

Hm. A different task.

I knew that the new task needed to be somewhat appealing, didn't encourage yet more bad habits, wouldn't increase my pudgy physique, and also wouldn't break the bank. 

Dang. There went watching endless old movies, pie baking, and shopping. My favorite things. 

Instead, I have decided that I would use this opportunity to re-visit the concept of doggie obedience. When I shared this idea with John, he laughed until he had to wipe away the tears. What a skeptic. 

I'll show him. Maggie, Bart, and Sam have no idea what lies ahead for them. I have dusted off my copy of Dog Training for Dummies. Oh, yeah. We're starting again from chapter one. 

Wait - for dummies??

Arte Y Pico

Thanks to Connie, over at My Chronic Life, for sending me the Arte Y Pico award. 

Housework Help

Image found here. 

As I finish some overdue housecleaning today, the Disney movie Cinderella keeps coming to mind. It would be nice if some animated birds and mice showed up to help while singing and twittering. 

My daughter told me that in the movie Enchanted, the heroine called for creatures to help her with her work, and instead of cute woodland animals showing up, various inner city vermin appeared. Chuckle. 

I wonder what kind of critters would appear if I could have Cinderella's ability to charm animals?

Hm. It would take a large dose of enchantment to transform my dog and cat critters into a housecleaning service.....

Stroke Study

Image by DartVader

A study was recently completed which looked at the length of time that postmenopausal women slept each night and it's relationship to strokes. The study concluded that women who sleep nine or more hours each night were at a whopping 60 to 70% higher risk of strokes than those who got seven hours of sleep per night. Those who slept six hours or less were also at an increased stroke risk.

"Whether it's because of sleep apnea or because of restless sleep or because of any number of things, we don't know," Sylvia Wassertheil-Smoller of Albert Einstein College of Medicine in New York, one of the researchers, said in a telephone interview.

"The study definitely does not say that for women who sleep longer, if they decrease their hours of sleep they'll be better off," Wassertheil-Smoller, an epidemiologist, added. (Emphasis mine)

The researchers said it is unclear whether the findings would apply to men and younger women.

The study, which ran from 1994 to 2005, also saw an increased stroke risk among women who got no more than six hours of sleep a night.

I am intrigued by this study, which had 93,000 participants, ran from 1994 until 2005, and factored in other stroke risks. Those of us who deal with Sjogren's and other autoimmune disorders that have associated fatigue issues are always aware of our need for restful sleep. I am one of those who routinely get nine hours of shut-eye each night.

I can't help but feel somewhat skeptical about the results of this study. There remains a great deal to continue to evalute before it can be stated with certainty that 9+ hours of sleep per night = increased stroke risk. 

It would seem that the variables associated with sleep and length of sleep are enormous. Did the researchers quantify sleep quality? Those who sleep fitfully for nine hours may actually experience fewer REM cycles than those who sleep soundly for seven hours. Many medication and herbal supplements can have a direct effect on length and quality of sleep. Were the participants exercising before bedtime? Did they sleep with a partner, who may or may not have sleep difficulties? Did they eat before bedtime? Did all participants sleep in a similar temperature and noise environment? 

I am left wondering what this information means for me. Is it better for me to get seven to eight hours of sleep each night and nap during the day if I'm still tired? Would it really be better to drag myself out of bed during a flare and ignore my bone crunching fatigue?

I think that I will simply tuck this information away somewhere in my goofy brain, and continue to be aware of the messages that my body sends me. I shall sleep as many hours as I need. 

So there. 

A Few Brain Cells Left.....

Image by Vierdrie

I had an opportunity to exercise my brain today, and I am glad to say that the grey matter came through for me. Briefly. 

I got a call from a person who volunteers for the same non profit that I do. He was late for an appointment, and in his hurry to close up the building, broke the key off in the lock. Could I come down and deal with the situation? He felt terrible but there was nothing else he could do.

I headed over to the building. 

Our non profit runs on a very low budget, so I was hesitant to call a locksmith. I grabbed a screwdriver and my cell phone. My friend Susan and I were successful in taking apart the lock, retrieving the broken key, and putting everything back together again. We high-fived each other and told each other how smart we were. 

Feeling extremely proud of myself, I headed back home and stopped by the grocery store to pick up a few groceries. 

"Hey, lady!" 

I turned around as I was strutting out of the store toward my car. A cashier was running after me clutching the groceries that I had paid for then forgotten at the checkout. 

Well, a fully functioning brain was nice while it lasted. 

Yawn

Garfield found here. 

Last week while I was in a flare, I gave in to my instincts and past experience with Sjogren's, and spent two entire days snoozing. I know just how you feel, Garfield. 

Slushed

Image by blary54

I love a good slush. 

Ever had one? It's a frozen yummy drink, and yes, it is an adult beverage. I introduced slush to my friends a few years ago at a Thanksgiving hoopla, and it was a real slush work of art. It was made with blackberry brandy and cranberries and, well, let's just say that everyone who drank one had a very happy evening. 

The process of making a slush requires some bartender skills, some cooking skills, but mostly demands a great deal of imagination in using whatever happens to be plentiful in your liquor cabinet and refrigerator. Freeze the concoction, scoop it out into a glass and add a splash of 7-Up or seltzer water. Delicious. 

My 23 year old daughter asked me if I would make a lemon slush for an upcoming party. I was happy to oblige. But as a result, here I am horizontal on Couch, and it's not due to anything even remotely autoimmune. 

I was feeling quite adventurous as I surveyed John's stash of liquor. I gathered up the Absolut Citron, triple sec, Limoncello, and Grand Marnier and plunked them down on the kitchen island. Aha - a can of frozen lemonade was found in the freezer, and some fresh lemons in the fruit bowl. Pushing up my sleeves, I felt inspired. Oh yeah, I thought. Let the magic begin.  

I began by making a simple sugar syrup, then stirred in fresh lemon juice and zest, brewed green tea, lemonade concentrate, pineapple juice, and softened plain gelatin. 

Next, I began the very delicate process of adding the right proportions of liquors to the mixture.  I have never written this recipe down, and it has occurred to me that the reason that I haven't is because the tasting part of this is too much fun.

A little of this? Slurp. Hmm. Maybe a little more of that. Sip. Needs more Grand Marnier. Better balance that out with more Limoncello. Oops, too lemony. More triple sec. Smack. Perfect. Well, am I sure about that? Glug. Yes, perfect. 

John came home for lunch, and I wobbled over to give him a hug. He grinned. "Making slush again, I see." 

"Yes!" I said. "Isn't it wonderful? Isn't life wonderful? Isn't it a beautiful, wonderful day?"

How peculiar. The floor began to shift underfoot, and I felt my face flushing. John pointed me in the direction of Couch, and suddenly the idea of a nice long nap became irresistible. 

It's a good thing that, in our house, one batch of slush lasts for a couple of months. 

Sojourn With a Sjoggie

Photo by lusi.

My friend Terese and I are on the road again. 

This time, we're part of the moving crew to help Terese's daughter transition from college to the real world, with a real job, and soon - marriage. It has been a fun trip with my daughter and one of her friends joining us. 

I'm along for my ah, ahem, superior supervisory skills. I was also supposed to be documenting this momentous occasion with my camera, but forgot my Canon. I wonder how many times I can blame my forgetfulness on brain fog or Sjogren's? 

I am so fortunate to travel with a group of people who are understanding and supportive of my need for pacing and rest. And lots of pit stops after guzzling multiple bottles of water, and running the air conditioning when everyone else is freezing, and having dibs on the seat in the car which is out of the sun, and getting dropped off at the hotel for a nap before dinner and....well, the list goes on and on. 

Yikes. I'm pretty high maintenance. I wouldn't travel with me, if I didn't have to. How did I luck out with friends and family like these?

I am buying candy and passing it around. That must be why they keep bringing me along. 

Fibromyalgia Pain and Fatigue

Photo by Brisa

Many people with rheumatic disorders, such as Sjogren's Syndrome, also unfortunately have to deal with fibromyalgia. Fibro is not considered an autoimmune disease. It's symptoms include widespread pain in all four quadrants of the body. WebMD defines it this way:

Fibromyalgia is a non-life-threatening, chronic disorder of the muscles and related soft tissue, including ligaments and tendons.  Its main symptoms are muscle pain, fatigue, sleep disturbances, and tender points at certain parts of the body.  Many people describe fibromyalgia as feeling like a persistent flu.

It's bad enough to deal with Sjogren's but fibromyalgia, too? Not fair. 

For those of us with this double whammy, you may be interested in a study which explored a biological link between pain and fatigue similar to that seen in fibro.  This article describes a recent study at the University of Iowa:

ScienceDaily (Apr. 9, 2008) — A recent University of Iowa study reveals a biological link between pain and fatigue and may help explain why more women than men are diagnosed with chronic pain and fatigue conditions like fibromyalgia and chronic fatigue syndrome.

The study, which was published in the Feb. 28 issue of the American Journal of Physiology -- Regulatory, Integrative and Comparative Physiology, indicates that muscle pain and fatigue are not independent conditions and may share a common pathway that is disrupted in chronic muscle pain conditions. The team plans to continue their studies and investigate whether pain enhances fatigue more in females than males.

"Our long-term goal is to come up with better treatments for chronic musculoskeletal pain," Sluka said. "But the fatigue that is typically associated with chronic, widespread pain is also a big clinical problem -- it leaves people unable to work or engage in social activities. If we could find a way to reduce fatigue, we could really improve quality of life for these patients."

Of Chocolate and Doctors

My rheumatologist and I get along really well. She's got a great personality and I have to give Dr. S. an enormous amount of credit for the support and empathy she has shared with me over the last five years. 

When I was first diagnosed with Sjogren's, I went through all the stages of grief that every person does when faced with significant changes in their life. About six months after my diagnosis, I hit the anger phase. With a vengeance. 

To watch a grown woman tantrum through her appointment must have tried Dr. S.'s patience. But she seemed to realize that I was railing against the fact that my life seemed to be controlled completely by my antibodies and just listened quietly, then asked how she could help. 

Even mid rant, I could see that this person sitting across from me in her white lab jacket was exceptional. From that day on, my view of my physician changed from that of the bearer of bad news, to my partner on this journey. I knew at that point that this was a relationship that deserved nurturing. 

In a past life, I used to work in a clinic. I knew what was needed to nurture people that populate clinics and hospitals. I knew where they kept their secret weapon to buoy their spirits on difficult days. I knew from experience what was hidden in all those sterile and professional looking drawers.  I knew what special ingredient would accompany me to all future appointments. 

Chocolate. 

Yes, chocolate. People in the medical field find chocolate a life sustaining food, and I was and am no exception.

 So now after I get on the scale (aaaack!) and have my blood pressure checked, Dr. S. joins me in the exam room and we break out the candy. We have shared Belgian chocolate, Finnish chocolate, chocolate covered cherries, M&Ms, Hershey Kisses, Tootsie Rolls, Toblerone, Dove Bars, Almond Joy bars, chocolate covered popcorn, Milky Way bars, Kit Kat, Snickers bars, and most recently, all varieties of Easter egg shaped chocolates. We don't discriminate when it comes to chocolates, but have agreed to try them all. We sit knee to knee and munch while we review labs and symptoms and medications. 

It's amazing how life's problems seem to lose some measure of importance when one has a velvety smooth piece of chocolate melting in one's mouth.....there's medicine, and then there's REAL medicine, and it comes wrapped neatly in foil and paper. Mary Poppins got it right. 

Take Two

I am having a flare. I am never a happy camper when this happens. My energy levels plummet but so also does any creative capabilities. 

For the next few days, I will re-post some of my favorite early blog entries. 

Movie Time

I'm a very visual person. I remember things better if I can actually see and hear them, so I suppose that means I am an auditory person too. I think there are a lot of people out there that learn that way. 

With the intention of finding other ways to explain my disease to friends and family besides handing them a book or a graph, I cruised around YouTube and was pleasantly surprised to find these two brief but very interesting videos about Sjogren's. 

Take a look.

This video found here. 

This video found here. 

Stylin'

Image found here. 

Chalk it up to brain fog - yet again. 

I have been cutting John's hair for a very long time - I would guess probably 20 years or so. Since John is, um.......challenged in the follicle department......., his haircuts are pretty simple. I use the old fashioned home hair clipper kit that you see in discount stores everywhere. Plug in the shaver, snap on the plastic hair length guide, and that's it. I run the shaver around his head for a few minutes and we're done. 

Last week, John was sitting on the kitchen stool, bath towel pinned snugly around his neck, ready for his "Julia Special" haircut. I grabbed the shaver, and starting at just in front of his right ear, began buzzing up and over his head. 

Oops. 

John was remarkably calm. He didn't even turn his head to look at me, but said evenly, "You didn't put the guide on, did you?" 

What a guy. His patience is only one of the many reasons that I married him. 

Yessiree, I gave him an inverse mohawk. Oh, yeah. Buzzed his hair off right down to the scalp in a perfect three inch strip. 

When I looked at the poor man's head, I did what any contrite wife would do. 

I collapsed onto the kitchen floor laughing so hard that my belly hurt. 

Meanwhile, John perched on his stool, crossed his arms over his chest, and stared at the ceiling. I suspect he was counting to ten. Or one hundred.  After a trip to the bathroom mirror to survey the damage, he sighed deeply, (gee, I've heard that sigh more than once over the years) and suggested that I just buzz the rest of his head. 

So that is just what I did, once I was able to compose myself enough to get another grip on the clippers. I finished the job with a minimum of snorting and giggling. 

Anyone else need a hair cut? Anyone? 

Cell Phone Cure

Photo by Rodolfo Clix

Ingenious students at MIT have devised a program which addresses the problems associated with treating patients for tuberculosis:

CAMBRIDGE, Mass. - Researchers at MIT believe they've discovered a new weapon in the battle against tuberculosis: Free cell phone minutes.For years, doctors have struggled to get some TB patients to take all their medication, which generally involves a six-month regimen of multiple drugs.

Now a student-led group at the Massachusetts Institute of Technology has developed a way to use cell phones to let patients test themselves. And if the tests show patients are following doctor's orders, they get rewarded with free minutes.

In 2006, the most recent year statistics are available, 9.2 million people worldwide were diagnosed with tuberculosis and 1.7 million died.

The disease can be cured with a steady regimen of drugs. But many patients start feeling better and stop taking the medicine too soon. Others abandon the drugs because of side effects such as nausea, fever and rashes.

If the drugs are taken only sporadically, the bacteria build up resistance. The WHO estimates that 5 to 10 percent of TB deaths are patients who stop taking medication properly.

You can read the AP article in it's entirety here. 

Experts agree that the concept has potential, but also stresses the importance of the continued patient to healthcare-provider interface.

I would be interested to hear what the folks over at e-Patients have to say regarding this concept. At first reading, this seems to me to be a good way to encourage patients to be engaged in their treatment, to be able to monitor their response to medication, and to be rewarded in a very concrete way for their efforts. 

Patient empowerment is a good thing, regardless of the disease or state of wellness of the individual.