Wisdom

Image found here. 

I found this gem on Sara Gorman's blog, Despite Lupus: 

 

"Don't let knowledge of the path take the place for actually walking it."

What good advice.

Prednisone and Sjogren's Syndrome

Image found here. 

Like most folks with an autoimmune disease, I take several medications, and one of them is prednisone. At the suggestion of Dr. S., I've been tapering my prednisone dose very gradually over the past three months, which has prompted me to wonder - why? What is it about prednisone that makes it a medication best taken infrequently? 

A prednisone tutorial of sorts would seem to be in order here. As in, what is it and why is it prescribed at all?

(Julia glares at the sleeping Sjoggie student in the back row. Don't make me come over there and whap you with my ruler, missy.)

Ahem.

We all know that Sjogren's is an inflammatory autoimmune condition, which means that our bodies and specifically white blood cells have mistakenly identified our own tissues as foreign substances. These cranky leukocytes then launch an attack on our own tissues and in doing so, create inflammation. You can refresh your memory about inflammation and it's nasty effects here in this excellent article by the Cleveland Clinic. 

In Sjogren's Syndrome, this inflammation can affect the saliva glands, the lacrimal glands in the eyelids, and other mucous-secreting glands, resulting in the hallmark dry eye and dry mouth symptoms. Other body-wide symptoms such as significant fatigue and joint pain are caused by inflammation. 

So why is an understanding of inflammation important in a discussion about prednisone? Because this medication can be a significant tool used among several other medications to reduce inflammation. 

An anti-inflammatory toolbox can contain several medications and strategies:

• pacing activities with rest periods
• adding omega 3 fatty acids to the diet
• maintaining a healthy body weight
• non steroidal anti inflammatory drugs such as ibuprofen, asprin, and naproxyn 
  
• anti malarial drugs such as hydroxychloroquine
  
• other medications such as methotrexate 
  
• corticosteriods such as prednisone
  

Corticosteroids, or drugs that closely resemble our own hormone cortisol, are a relatively new addition to the anti-inflammatory toolbox, explained here on About.com:

Corticosteroids or glucocorticoids, often just called "steroids", where once thought to be almost miraculous. In 1948, at the Mayo Clinic in Rochester, Minnesota a group of arthritis patients were given daily injections of a corticosteroid. The results were so striking and the improvement so dramatic that it was thought that the "cure" for arthritis had been discovered. However, as the use of corticosteroids expanded over the years, side effects emerged and it was realized that high doses given over prolonged periods of time turned steroids into "scare-oids". 

Prednisone was found to have a dramatic anti-inflammatory effect, a valuable asset in dealing with significant and systemic symptoms in Sjogren's, such as lung, kidney, liver, and gastro- intestinal inflammation. 

Used judiciously, corticosteroids are a necessary long-term medication for many Sjoggies. However, due to the numerous side effects of these drugs, careful monitoring is required when prednisone is taken over long periods of time or at high dosages. 

Others, like myself, take prednisone only when my symptoms require it. In these instances, Dr. S. prescribes a "burst and taper" dosage, meaning an inital dose followed by gradually smaller amounts of the drug until the medication is discontinued. 

The side effects of corticosteroids are the limiting factor in prescribing this powerful drug. Some of the side effects include:

• skin thinning
  
• acne
  
• increased hair growth, or hirsutism
  
• cataracts
  
• premature atherosclerosis
  
• gastritis
  
• menstrual disturbances
  
• osteoporosis
  
• muscle weakness
  
• diabetes mellitus 
  
• high blood pressure
  
• increased risk of infection

(Information taken from The New Sjogren's Syndrome Handbook edited by Daniel J. Wallace, MD, pgs 131-132)

 MayoClinic.com also has a very good article, found here, that explains prednisone basics. 

Sjogren's Stole My Dancing Feet

Image found here. 

I miss doing the housecleaning dance. 

Not for public view, mind you. But I have always cranked up some kind of music source, and yes, originally it was a record player, when I needed motivation to do some housecleaning. With the bass line thumping and volume up as loud as the neighborhood would allow, I'd scrub and dust and do whatever needed doing. 

In the '70 Boz Scagg's Lido Shuffle got the feather duster flyin'. 

The Go Go's We Got The Beat was ideal once we hit the '80s. 

A frumpy mom with baby barf on her shoulder rocking around the house with a vacuum cleaner was hardly stuff made for MTV, but was enjoyable for me nonetheless. I'd con the kids into helping. "Hey guys! Let's have a cleaning party!" They fell for it until they were pre-teens, and who can blame them? It was either join in the dance or hide in the closet with their little fingers in their ears. 

Those energetic cleaning dances are a thing of the past, sigh. One of those episodes would leave me in bed for a week. Maybe I just need to learn to do a slower version - a dignified waltz tempo, or perhaps a sedate fox trot. 

Nah. It's Crocodile Rock or nothin'. 

Four Wheel Freedom

Image found here. 

I owe my buddy, Goldie, more than high test gas and hand applied wax. Yes, she's my car, but she provides more than just a way to get somewhere.

Her name is Goldie because she has sandy gold - colored metallic paint, and because she was my fiftieth - golden - birthday present. She is a Toyota Prius, a small hybrid hatchback that gets phenomenal gas mileage, which means that she and I can zip around to our heart's content without breaking the bank.

That's a very good thing. A few weeks ago, I was down for the count in a flare. After a few days of self-imposed house arrest, I was feeling antsy, yet my body needed a bit more rest. I needed an outing that didn't require much energy. 

Goldie to the rescue. I pulled on sweat pants, dragged a comb through my hair, and hopped in the car, Maggie and Sam at my heels.  The dogs are equally as bored as I am when a flare strikes, poor things. When we joyride in Goldie, they always are invited along. It's the least I can do after subjecting them to days of my high decibel snoring. 

We always drive through for coffee first thing. For me, a cup of coffee sitting at my kitchen table just doesn't provide the same kick as a cup of coffee in a paper cup drunk behind the wheel of Goldie. Then, we head for the nearest drive-through fast food joint. The dogs aren't fussy - they love a small order of french fries no matter where they're cooked. I sip my coffee and the dogs wolf down fries as we head out wherever our whimsy takes us. 

Sam enjoys driving around a nearby lake. His ears perk up and he might even briefly pause his fry chomping if he sees a duck. Maggie is happy no matter where we drive, as long as she can wedge herself as close to me as possible. Sometimes I treat Goldie to a car wash and top off her tank with premium in appreciation. 

I always pull into the garage after these outings feeling better.......even if I head back to the couch for yet another nap. 

Where do you find your freedom from fatigue? 

My Collection

Image found here. 

Some people collect vintage cars. Others, coins or stamps. 

Me? I collect vacuum cleaners. Yep. Got quite the stable of beauties, if I do say so myself. 

I remember my first - a Sears canister vac, that was back in the days before beater bars. Ah, she was a good old girl. Bought her in '78. Then I got married, kids and dogs and cats came on board, and she just couldn't cut the mustard. But what a classic. Wisht I would have kept her just to refurbish her as a collector edition, but oh well.....

Back in those vacuum novice years, it seems that all we needed was one good machine. Floors, cars, garages, and occasionally dogs (don't ask), could all be handled as long as we kept the bag emptied and the hose unclogged. 

I'm not sure when it all began, but I suspect my interest these gizmos was piqued with the first dustbuster. You remember - those teensy vacuums that you held in one hand? They were impressively loud, but didn't pick up anything bigger than one corn flake. I had to have one. I still do, and the new ones really don't work any better than the old ones, as you can tell by the cat hair featured prominently in this picture. 

I discovered shop-vacs next. There is nothing like having the power of a roaring shop vac to make a woman feel powerful over any and all species of dirt. This beauty has suctioned its way through three of our houses:

So since autoimmune disease and it's fatigue have arrived, one of the few household tasks that I (strangely enough) enjoyed, has become a part of housework that is extremely difficult for me to do. Lugging machines around the house and up and down stairs takes more energy than I care to spend most days. 

My solution to the alarming accumulation of animal hair and dust has been simply to buy more vacuum cleaners. I scatter them around the house everywhere, so that if I am so inclined, I can vacuum at will. At any time. When and wherever I want. 

This is my upstairs vacuum:

And this is my downstairs vacuum:

My favorite is the robot vacuum that one of the kids gave us for a Christmas present. 

The pets find this one pretty entertaining. You push the button, it takes off and cleans until it A) finishes the task and docks itself into it's own recharger, B) becomes hopelessly stuck underneath the sofa, C) eats a rug fringe and beeps pathetically until the batteries run out, or D) miscalculates where the stairs are and throws itself down a full flight of steps. When it's actually functioning, I am always amazed at the amount of debris this little guy can grab. 

If after reading this post, you are under the impression that I actually use all these vacuum cleaners routinely and that my home is pet hair and dust-free, well........

You would be wrong. 

Sjogren's and Swimming Pools

Image by konr4d

A reader recently asked if the chlorine in a swimming pool could increase symptoms of Sjogren's Syndrome, specifically stinging and burning. She didn't specify where these symptoms occurred - I'm guessing the chlorine affected either her eyes or skin, or possibly both. 

Great question. 

First, I want to commend her for the reason for her question - she is spending as much as an hour each day in a swimming pool. Kudos to her for the commitment to exercise!

I would love to say that I hit the pool every day too, but then I would be telling a big fat fib......actually I think I'm doing the world a favor by not frightening small children with the image of myself in a swimming suit. 

Ew. Back to the question at hand: 

Chlorine, the disinfecting agent used in most public swimming pools, could definitely make Sjogren's eyes and skin - already parched thanks to autoimmune dryness - even more dry and irritated.  

Some suggestions: 

Skin: Consider applying a moisturizer to your skin an hour before going to the pool. Shower immediately after leaving the pool, using a hypo-allergenic soap and cool water. Sometimes Sjogren's skin can become irritated simply from exposure to very warm water, such as may be found in some heated pools and hot tubs, and cooling the skin down may help. A shower will also remove residual chlorine from the skin. Follow the shower with a moisturizer. 

Eyes: Before entering the pool, moisturize the eyes with your favorite preservative-free eye drops. Consider using swim goggles to decrease contact of pool water with your eyes. After leaving the pool, irrigate the eyes again with eye drops. 

If the pool is outdoors, be aware that sun exposure is difficult for many Sjoggies, so be sure to apply a sunscreen, and if possible, avoid long exposures to direct hot sun. You can read my previous post about sunshine and autoimmune diseases here. 

If after consistently swimming in a public pool or using a public hot tub, you develop a rash, or your eyes become increasingly red or inflamed, consult a doctor. Unfortunately, it is possible to contract eye, skin, and other infections, called recreational water illnesses by the CDC, while utilizing a public swimming pool. You can read more about RWIs here. 

Survival of the Sjoggie

Image found here. 
My youngest child, home from college on spring break, introduced me to one of those survival shows. You know, the kind where this guy gets dropped off in the wilderness with only a toothpick and a pack of mentos and is expected to survive for a week. 

I find this show fascinating. Survival guy always manages to, of course, survive, and in the process comes up with the darndest tips and tricks to escape the jaws of death. 

While I find this show very entertaining, it has provided me with some unexpected material for late-night musings.....those thoughts that sneak into my head just as I'm about to drift off to sleep. 

What if my car broke down in the middle of the Sahara desert? (Because, of course, I frequently drive across the Sahara...yeah.) Would I remember all of survival guy's methods? 

What if I forgot that bugs with colored legs and a bad odor are probably poisonous? And what's the best way to eat a termite? Would I really consider eating a termite? Or a scorpion? And what the heck did he use the car's radiator fan belt for, anyway?

Could I bring myself to actually - and I am not kidding, he had this on the show - filter urine through desert sand to provide drinking water???

Would I survive if I didn't have three camera crews to document my every agonizing minute? 

And how could a Sjoggie possibly survive anywhere, much less the Sahara, without a case of water bottles, a  Costco-sized container of moisturizer, several boxes of preservative free eye drops, three flavors of sugar free hard candies, lip gloss, and her pill organizer containing at least one week's worth of medications?

I'd be doomed. Better not leave the house until I quit watching those television shows. 

Welcome

Image by m_grzona

Today I came across another blog that, among other topics, discusses the autoimmune experience. Written by Vee and titled A Pixilated Life, this blog is well written and adds another, much needed Sjoggie perspective to the blogging world. 

Check it out. 

Your Medical Record

Image found here. 

My fellow Pacific Northwesterner, Maria, over at My Life Works Today, threw out an incredibly useful challenge to those dealing with a complex medical condition. She asked - How do people with chronic illnesses organize their personal life-saving information? Tell me how you have done it. You can read her thoughtful post here.

Maria, Maria, Maria. You thought I had anything organized? Silly girl.

However, as someone who has worked for many years inside the health care system dealing with chronically ill clients, I can make a reasonable guess about what sorts of information I should have available to my family and health care providers. (Julia slaps on her ancient nursing cap and attempts to look serious). To begin, I have to say, Maria has already compiled an impressive list:

       "An Emergency Health Information card to carry with me

A Health Team Roster (Contact List) to share with family and friends including roles

A Medical/Health Reference binder for medications, dosages, allergies, and specific illness-related topics (such as sun and fluorescent lighting info for flare management, minimizing dampness or cold temperatures to minimize raynaud’s, tracking symptoms and diet) to bring to my appointments

A Self-care wish list (things that help me feel better, laugh or generally make me happy if I can’t communicate - either because of health or if I’m just not up to relying on others’ help )"

Other items that may deserve inclusion in the above list might include faith based restrictions on medical care, such as blood transfusions, and preferred hospitals and locations for emergency medical care.

A Family health history may also be important. The US department of health and human services has an online tool which may be helpful in creating this important health history.

Maria provides excellent links to legal forms, such as DNR (do not resuscitate) orders, organ donation, and Advance Directives. Her links are specific to the state of Oregon, so be mindful that these types of issues are administered specifically by each country and state's laws. Check into your own state's regulations. 

It seems to me that how this important information is organized is less important than if it is organized. A simple notebook and folder labeled clearly and placed where family members can easily find it may be all one would need. 

Personally, I really like the ease of fill - in - the - blank type record keeping. The US Food and Drug Administration provides this easy to use medication information tool, found here, which can be printed from your computer. Free personal health record forms from the American Health Information Management Association can be found here. 

For those seeking a more techno-savvy method of record keeping, there are other options, some of which store your personal medical record online. A word of caution here - this very private information when located online may be made public without your consent. Proceed carefully when sharing your data on unsecured sites. You can read more about laws governing the dissemination of private medical records information, or HIPAA laws, here. 

Knowledge of your medical conditions is essential. The simple act of collecting and documenting this information could be a beneficial learning experience, which also may help patients develop a stronger sense of responsibility for one's own health care. Read more about empowered patients in health care on e-Patients.net. But I digress, that is a much longer discussion for another day. 

I think that this task deserves to be moved to the top of my Julia Do list. Thanks for the idea, Maria.

Chugging Along

Image found here. 

I've had a few crashy days this week. Anyone who has experienced autoimmune fatigue knows what I mean by crashy. It feels like this: I'm a lawnmower. Yes, strange image but stick with me here. I'm a lawnmower with a job to do - obviously to mow the lawn. Yet my gas tank is almost empty. So I go about my work, and within minutes, my engine putters out and dies. Someone puts another dribble of gasoline in my tank, I fire up to get back to the grass, and within another minute or so, my engine dies yet again. Again, I only get given a measly dribble of gasoline.....my two cycle engine truly only has two cycles - almost out of gas, and completely out of gas. 

Aside from the frustrations of not being able to do physical tasks, this kind of fatigue is taxing emotionally, as well. 

I feel as though I am always waiting for a magical day, when I can awake full of energy, and instead of refilling my fuel tank with a miserly few drops, I am recharged completely. I want to be able to look ahead to the next day with the expectation that I can, well, I just can. I can do the vacuuming. I can walk the dog. I can go shopping with my friends. I want to feel as if I can do all those things that I used to do. 

It takes a good deal of emotional energy to rationalize this frustration away. I begin with a thought something like this: Take one day at a time. Just put one foot ahead of the other. Be thankful for the abilities that I do have -  My body still is intact, my brain usually is functional, and I may be slow, but I still have the capability to do most of the things that I need to do. 

Making a mental list of my remaining abilities always helps, and makes me wonder: What do those with disabilities much more significant than I do to keep going? What motivates them to take one day at a time and keep putting one foot ahead of the other? And most of all, I wonder, how can I be more like them? 

Everything Old Is New Again

I was listening to some music on a satellite radio channel this afternoon. If I want to make sure that I can doze off, it's helpful for me to tune in to the new age music channel. It really doesn't require that I engage my brain and it makes great background music. Usually I can expect to hear vague, soft melodies with no specific cadences or differences in dynamics. Just a soft, flowing river of music. Makes for napping perfection. 

So today while resting and the new age music playing away, I heard a familiar tune. I thought - that's beautiful - but definitely not new age. 

I grabbed my laptop and zipped over to iTunes to double check - and yes, that lovely tune was indeed Ave Verum Corpus - an ancient Eucharistic hymn dating back to the fourteenth century. The version most frequently heard was written by Mozart in June of 1791. 

Enjoy. 

Sjogren's Nutrition

Image by lockstockb

Someone asked me recently, "What should I be eating if I have Sjogren's syndrome?"

That's a great question. But frankly, I was surprised that someone would ask me this if they had read my blog for any length of time. With respect to healthy eating habits, I would be the complete antitheses of the ideal Sjogren's syndrome poster child. 

(For examples of pathetic eating habits, read this and this and definitely this, for starters).

Because this is an excellent question, and about a topic which I would benefit enormously by knowing more, I decided to do some serious reading. Obviously, healthy eating habits and good nutrition are important for all of us, even for those lucky few who don't have weight issues, do not deal with any chronic diseases, and are capable of rigorous exercise on a frequent basis. 

The New Sjogren's Syndrome Handbook edited by Daniel J. Wallace, MD, summarizes the importance of good nutrition in this way:

"Good nutrition can influence mood, energy level, thinking ability, and sleep. It is not simply a matter of eating a certain food or taking a certain vitamin and having the Sjogren's syndrome go away......It is a matter of eating to increase health and stamina and to improve the chemistry in the body, including the brain."

The USDA food pyramid  offers this to explain the basics of healthy nutrition:

I think we all know the value of eating lots of whole grains, fruits and vegetables, moderate amounts of dairy and protein, and small amounts of fats, oils and sweets. That being said, I think my reader was asking for more dietary guidelines specifically for those dealing with Sjogren's syndrome. 

I want to be clear: There is no miracle food to cure autoimmune disease. I sure wish there was. But for Sjoggies, what we eat, and how we eat it, can significantly change our day to day experience with autoimmune disease. 

Fatigue: 

It seems to be the easiest thing to do: grab a cup and start chugging caffeine to provide a quick energy boost. It's hard to resist this fix for fatigue, but long term reliance on caffeine may not be a good idea: 

"Within five minutes after you drink your morning coffee, the caffeine begins to stimulate your central nervous system, triggering the release of stress hormones in your body, causing a stress ("fight or flight" ) response. The stress hormonesare useful if you need to prepare yourself to fight or flee a dangerous situation, but if you are simply sitting at your desk you may feel a short charge of alertness, quickly followed by feelings of agitation. Within the next hour or so, after the stress response dissipates, you will probably feel more tired and hungry. At these low-energy times, many people reach for another cup of coffee, or eat a snack that is often high in sugar to "pep up" and stay alert. However, both caffeine and sugar only give you temporary feelings of increased energy, which quickly dissipate. For some people, this cycle of low energy followed by an infusion of caffeine or food continues the entire day -- leaving them feeling exhausted and unable to focus by 3:00 p.m. because they are drained from the ups and downs in energy their body endured throughout the day. "
Active Wellness By Gayle Reichler MS RD CDN

Other food choices may influence energy levels: 

"Carbohydrates can alter the level of serotonin in your brain and bring on feelings of calm and relaxation. That can make them a good before-bedtimesnack, but less good in the middle of the day.

One lunch trick to help you overcome the temptation to nap is to eat pure protein. Protein is broken down into its amino-acid building blocks during digestion. One amino acid, tyrosine, increases the production of the chemicals that are also released when you are under acute mental or physical stress and are well known for their ability to increase levels of alertness and energy levels.

For maximum effect, eat only protein, as carbohydrates will interfere with its effect."

Nutritionist Sue Gilbert, MS

Inflammation:

Fish oil, and other sources of omega 3 fatty acids, have received widespread attention recently for their anti-inflammatory effects. Some studies report a decrease in dry eye symptoms after increasing their intake of these beneficial oils. Fish oils are available in supplement form, or of course, found in fatty fish such as salmon. Flax seed oil supplements are also another source of omega 3 fatty acids. You can read more about the beneficial properties of flax seed oil here, on the Mayo Clinic website. As always, never begin taking any supplement without checking with your doctor first, and ask for his/her suggestions for dosage instructions.  

Another potential anti-inflammatory found in foods is moderate consumption of ethanol, or the alcohol found in beer and liquors, as outlined in this 2008 study. 

Decreased Saliva Production:

The mechanical act of chewing, swallowing, and digesting food is impacted by a decrease in saliva production in SS. Veterans of this disease understand the impossibility of simply eating a soda cracker, or a piece of bread or any dry food. Dry foods need to be dunked or followed with a chaser. Obviously, foods with higher moisture content are easier to chew and swallow. 

Water is important for those dealing with SS for several reasons. Drinking water frequently in small amounts is soothing to a dry mouth. But adequate non-sugary fluid intake also assists in other ways. Dental caries are a significant problem for those with decreased saliva issues. Drinking water or chewing sugar-free gum after meals helps clear the mouth and teeth of residual food and helps reduce cavities, along with meticulous regular brushing and flossing. 

A decrease in saliva can also result in constipation by reducing the viscosity of the food bolus moving through the intestine. Increased fluid intake along with eating adequate amounts of those healthy fruits and vegetables found on the food pyramid can reduce constipation. 

Irritable Bowel Syndrome and Food Intolerances: 

These nasty conditions frequently accompany autoimmune disease, as discussed in an earlier post. However, as outlined in this NIH article, some dietary strategies can help in IBS management:

• Fatty foods, milk products, chocolate, alcohol, and caffeinated and carbonated drinks can trigger symptoms.
• Eating foods with fiber and eating small meals throughout the day may reduce symptoms.

Overall, good nutrition is important for everyone. But for those with any kind of health issues, including Sjogren's syndrome, healthy eating habits can be another valuable asset in managing their disease.