What exactly is stress? Stress occurs in response to circumstances that require us to adjust or adapt. Research has shown that the degree or intensity of stress that we experience in response to a situation depends on how we evaluate or interpret the threat or challenge from the stressor and the resources we believe we have to cope with the situation. The more we doubt our ability to cope with a situation, the more stress we feel. Living with a chronic illness such as lupus can certainly be stressful. The level of stress experienced in relation to living with lupus will depend on how demanding or challenging we feel the illness is and how we perceive it impacts several areas in our lives (i.e. work, family, leisure activities). This of course can vary over time depending on how active the illness is and on other factors which can alter our response to stressful situations (i.e. level of social support).

Is all stress bad for you? No. Stress is a normal part of everyday life. In fact life would probably be quite dull if we had no stress. Stress only becomes a problem when it interferes with our ability to perform daily tasks, negatively impacts our healthy (i.e. chronic muscle tension, stomach upsets) or leads us to engage in unhealthy behaviours in an attempt to temporarily reduce stress (i.e. smoking, drinking alcohol excessively, poor eating habits).

What factors can modify our response to stressful situation? Some factors can actually reduce or increase our response to stressors. These include:

  • Perception of Control. The more control we feel we have over the stressful situation, the less stress we will feel in relation to the situation.
  • Social Support refers to our perceptions of the degree of comfort, caring or help we receive from others in our social network. The more we feel we have others in our network that we can rely on in times of need, the less stress we feel in response to stressful situations. In fact studies have shown that lupus patients who report higher levels of social support also repost better physical and mental health status.
  • Coping style. Coping refers to the strategies we use to manage stress. This can include problem-focused strategies which are active behaviours aimed at tackling the problem such as finding out more about your illness, engaging in self care behaviours (i.e. exercise). Problem-focused coping strategies work best in response to situations which are under your control (i.e. meeting a deadline). Emotional focused coping refers to behavioural or cognitive strategies aimed at reducing the emotional reactions (i.e. sadness, anxiety) caused by a stressor, such as talking to a friend about how you are feeling. Emotional focused coping strategies work best in response to situations that are not under your control such as dealing with a lupus flare-up. Overall, studies have sown that people who use multiple strategies cope better with stress.

What are some mind-body interventions that can help reduce stress?

  • Awareness. Become aware of how you react physically (i.e. racing heart, indigestion, tight neck and shoulders), behaviourally (i.e. eating poorly, crying) and emotionally (i.e. easily upset, losing your temper) when stressed. Awareness is an important first step to better managing stress as it allows you to catch yourself earlier rather then allowing the stress to become prolonged.
  • Change your self-talk. Learn to reframe the situation in a more positive light. Focus on aspects that are under your control and don’t waste energy trying to modify what can not be changed!
  • Keep a journal. Writing for about fifteen minutes daily can help you better understand and work through your feelings and find solutions related stressors.
  • Stay connected. Be sure to ask for help when you need it. Stay connected with friends and family, avoid the urge to retreat. Talking to someone about how you feel can help you see things more clearly and helps to release negative feelings.
  • Learn a relaxation technique. There are many forms available (i.e. meditation, progressive muscle relaxation).Explore different ones and see which feels right for you. Remember that to experience the benefits of these techniques it takes daily practice. So schedule in some time and give them a chance!

Deborah Da Costa, PhD
Assistant Professor
Department of Medicine
McGill University

Systemic lupus erythematosus (SLE), or lupus, is a chronic inflammatory disease which can affect the skin, joints, muscles, serous membranes, blood cells and different organs of the body. The underlying abnormality of SLE is a dysfunction of the immune system, which becomes over-activated and attacks the body’s own cells rather than foreign agents (such as viruses and bacteria). Although the precise cause of SLE remains unknown despite much ongoing research, many different factors have been implicated. Genetic, or inherited factors are among the contributors to the onset of SLE. Although SLE and other autoimmune diseases (such as problems of the thyroid gland and autoimmune anemia) can run in families, the chance of passing SLE from parent to child is lower than 5 %. Usually the siblings (excluding identical twins) of an SLE patient are not affected. However, for an identical twin, the risk of getting SLE is greater.

The relatively low risk of SLE being passed down through families of SLE patients can be explained by the fact that many different genes are involved : each gene contributes individually to the risk of developing SLE, but each is not enough on its own to induce the disease. In other words, if you have SLE, it is unlikely that your child will develop it. If your child has SLE but you do not, you should not blame yourself, and it is unlikely that a sibling will develop the disease. The genetics of SLE is an area of intense research, and much more information will undoubtedly be gained in the near future.

Dr. Tamara Grodzicky
Hopital Notre-Dame and University of Montreal

The most important proven environmental trigger of SLE is ultraviolet (UV) light, such as direct sunlight and the light used in tanning salons. Ultraviolet light can induce chemical changes within skin cells that may activate the immune system. Although it is unclear whether exposure to UV light is sufficient to actually cause SLE, it is known that the onset of the disease after excessive sun exposure is not uncommon, and that flares of SLE often occur in certain patients after exposure to sunlight. It is therefore recommended that patients with SLE avoid exposure to UV light as much as possible : remaining indoors between 10 AM and 4 PM when UV light is at its maximum; wearing long sleeves and pants, as well as hats with wide brims; frequent application of sunblock with a sun ptotection factor (SPF) of 15 or higher.

Other factors implicated in the triggering of SLE (first episode or relapse) are the following :

  • Pregnancy or therapeutic abortions (risk present up to 3 to 6 months post-partum)
  • Oral contraceptives containing high dose estrogens (low dose estrogen or progeterone containing compounds are usually not contrindicated in inactive, mild SLE; their use should nevertheless be be discussed with the patient’s physician)
  • Surgery (which may be related to the release of certain substances into the bloodstream)
  • Certain infections
  • Certain antibiotics (sulfonamides and penicillin)
  • Stress (implicated mostly in mild disease)

At present, there is no scientific evidence that diet (for example : meat or aspartame), silicone breast implants, hair dye, pollution or other environmental toxins cause SLE.

Dr. Tamara Grodzicky
Hopital Notre-Dame and University of Montreal

The first step that must be taken when starting an exercise routine is determining the type of arthritis that is present. People may have both osteoarthritis and rheumatoid arthritis, or they may experience only one at a time. In both cases, exercise is thought to be an excellent way to treat the pain and the loss in range of motion.

Osteoarthritis is usually the result of wear and tear, while rheumatoid arthritis is caused by a malfunction in the body that causes it to attack itself. According to Fischman and Hobson (2005) there are nine ways to help fight both types of arthritis with exercise being number four on the list. The number three on the list also involves strength and balance that can be achieved through training.

High impact exercises like those that involve jumping or hitting the ground at high intensities are not recommended because they may cause more joint damage. Walking, cycling, an elliptical trainer are all cardiovascular exercises that have generally very low impact and are considered to be safe in the presence of arthritis. Exercise in the water such as water aerobics are considered to be good but only in the case of severely advanced arthritis because this type of exercise does not have the impact necessary to help build up the bones and joints in the body.

Weight training is also a very good way to regain some of the range of motion in the joints due to the repetitive movements in the area that is being trained. This will also strengthen the muscles around the joint, help increase balance, and help build up the bones for prevention of osteoporosis. With every weight training program, there should be stretches that follow in order to increase flexibility. It is very important that a qualified individual makes the training program in order for it to be efficient.

Exercise in itself helps balance out the immune system, helps blood circulate better in the body, prevents heart disease and of course, something we all want, it burns calories. To make any training program worthwhile, a balanced diet must be adopted and above all, the doctors orders must be followed.

Miriam Gaudelli, B.Sc.
ANIE certified Personal trainer, ANIE certified spinning instructor
and CSEP certified fitness evaluator

Fatigue is the most commonly reported symptom in patients with lupus. It can be physical:”I’m too tired to stand up” and/or mental:”I can’t concentrate today”, “I keep re-reading this paragraph again and again”.

While the exact cause of lupus fatigue is unknown, physiological and psychological factors involved. Depression, stress, poor sleep and lack of physical activity can worsen fatigue. Here are some psychosocial strategies that can help:

  1. Learn a stress-reduction technique (i.e. relaxation, meditation). There are great self-help workbooks and audiotapes to learn stress-reduction strategies.
  2. Establish better sleep patterns.
  3. Keep a diary of your fatigue patterns – identify and CHANGE stressors, thoughts and behaviours that may be increasing your fatigue. My patients have found this technique most helpful for better understanding when in the day they get most tired and in planning activities around times when their energy level is higher.
  4. Get some exercise. Consult with your physician and start gradually. Exercising regularly is important for muscle strength, endurance and improves fitness which in turn will give you more energy.

Deborah Da Costa, Ph.D.

Assistant Professor
Department of Medicine
McGill University

Medical Scientist
Division of Clinical Epidemiology
Montreal General Hospital
McGill University Health Centre

Work on Your Thinking.
This is one of the most effective strategies for coping with negative feelings such as frustration, depression or anxiety that often results when one is living with a chronic unpredictable illness like lupus.

Remember, you feel the way you think:

Avoid thinking in all or nothing ways – I’ll never be able to enjoy the things I like to do again. Counteract this thought with a more positive one. I can still enjoy a lot of things I like, and can I discover new things to do and enjoy.

Avoid jumping to conclusions. I feel tired today, I must be getting another flare-up Counteract this thought with a more likely cause. I feel tired today, I should listen to my body and take it easy today.

Avoid thinking about worse case scenarios. If things don’t start improving fast I will get fired. Counteract this thought with a more realistic assessment. I have only taken one day off this month and my boss understands my situation. My other co-workers also get sick and nobody here has ever been fired for taking sick days when they were ill.

Learn to say “NO”
You don’t have to do something if you don’t have the desire, energy or time! This is by far many of my patients’ favorite homework assignment that I give them. Initially my patients are a little ambivalent about whether saying “NO” can even be an option and often worry about how others will react. With some practice, patients report that saying “NO” is actually much easier than they had expected and people are typically very understanding.

Deborah Da Costa, Ph.D.
Assistant Professor
Department of Medicine
McGill University

Medical Scientist
Division of Clinical Epidemiology
Montreal General Hospital
McGill University Health Centre

Naturopathy’s strength lies in treating the individual, not just the disease or symptoms. As a Lupus patient is different than the other patients, the best approach-when looking into natural remedies-is to get a professional opinion.

However, generally speaking, there are a few lifestyle changes a Lupus patient should pay more attention in order to balance out one’s immune system:

  • Good, restful sleep(the immune system regenerates during sleep)
  • Good nutrition, more specifically absorption (in order to heal, and have energy,) The basis of good nutrition starts in the mouth with the way one eats and more particularly the way one chews.
  • The reason for all digestive processes is to get the food broken down into the smallest particles which will be absorbed later across the intestinal membrane into the blood stream. All of this can be eased off by increasing the number of chewing movements at each bite. The well researched “golden rule” is: if your food feels like “baby food”(which happens after about 35 chews), go ahead and swallow.
  • Adequate relaxation and stress control. Meditation is one of the best tools a lupus patient can learn for managing the disease.

    In good health,
    Dr. Anca Martalog,
    Doctor of Naturopathic Medicine
    Richmond Hill, Ontario.

One of the major concerns for people faced with a chronic/episodic illness is managing cash flow. Knowing that there will be periods of not working, and/or periods of declining health, means that serious planning in advance is required. Much of this advice also applies to Canadians not currently dealing with a disability.

  1. Plan ahead for cash flow. This is not so much budgeting – more a question of knowing where the money is going and figuring out what expenses can be cut if or when the need arises. For example, reduce transportation costs if you live in a city by eliminating car costs where possible. Reducing phone or cable costs; eating out less and reducing entertainment and the recreation budget can help enormously.
  2. Know what income you could expect to have – is the nature of your disability one which will permit part time work but not full-time? Do you have a spouse who works – or who could work – and generate income? Are parents/children/ siblings able to assist you financially?
  3. Know where you could get extra income – do you have a spare room you could rent out to a student for example? Are your grown children living with you while working? Are you charging them a reasonable rent? Can it be increased?
  4. Whether a progressive or intermittent illness is the cause of your disability, get debt paid down as rapidly as possible while you are healthy. Avoid credit card debt. Renegotiate your mortgage to a longer amortization period and arrange to pay the minimum each month. Then, increase payments or make lump sum payments as allowed by your mortgage agreement once a year, or double up monthly payments if this is an option, when and as you can. In this way you leave yourself maximum flexibility in your cash flow and don’t have to approach the mortgage lender to renegotiate your mortgage from a position of weakness.
  5. Manage debt sensibly – if you own your own home and have a reasonable amount of equity in it, negotiate a home equity line of credit for at least one year’s living expenses only to be used for periods of disability if there is little or no other income.

  6. Make sure you understand how Employment Insurance (EI) sickness benefits work if you work for an employer, and make sure you understand any group short term sickness and Long Term Disability benefits. If you are self-employed, the need for an emergency fund is much greater – no short term EI or group benefits for you!
  7. If you have an individual disability insurance plan, make sure you understand all the benefits and ramifications. If in doubt, talk to your insurance agent.
  8. If you have savings outside an RRSP, these funds can be accessed to provide income while you are not working. Of course you already have an emergency fund of 3-6 months living expenses, don’t you?! Replenish savings when you are working again.
  9. If you will have a year of no taxable income (that is, you have no income from EI, CPP disability, and any disability insurance is non-taxable), then it is worth considering dipping into your RRSP. RRSP’s are taxable when withdrawn either in a lump sum or as an income stream at retirement. But if you have no or very little other income in a year, the basic personal exemption is $8,148 in 2005 which means that you can withdraw this amount from the RRSP and pay no tax. The financial institution will withhold tax (if you take the money out in amounts of $5,000 or less, the with-holding rate is 10%) but you will get it back when you file your tax return. Even if you have a spouse who could claim a spousal amount for you, the benefit is only about $1200.
  10. Check to see if you qualify for the Disability Tax Credit – this is an additional tax exemption but in order to qualify, much depends on your inability to perform the activities of daily living. This deduction will allow you to withdraw an additional $6,500 from the RRSP tax free.

Everybody’s financial situation will vary and these strategies are not suitable for everyone.

Janet Freedman CFP, R.F.P.

Janet Freedman is a fee-only financial planner and President of Finance Matters in Toronto. She is also co-author of Hit by an Iceberg: Coping with Disability in Mid-Career, December 2003 by Trafford. Find out more at www.hitbyaniceberg.ca. You can email Janet at janet@hitbyaniceberg.ca

This “Ask the Expert” article is adapted from an open discussion with members of the SLE Workshop of the Hospital for Special Surgery, New York, on November 17, 2005

Gratitude is a feeling of thankfulness and appreciation that can influence our emotional and spiritual experiences. Our sense of gratitude can bring enhanced meaning to our lives. Embracing gratitude in relation to Thanksgiving and living with a chronic illness like lupus can be challenging, but also very healing in terms of coping with the stress of the holiday season.

  1. Expressing emotions of thankfulness
    People attribute words like thankfulness, acknowledging, appreciation, and recognition to the meaning of gratitude. Unfortunately, however, as our members discussed, it is difficult to express emotions of thankfulness and appreciation when dealing with lupus. They pointed out that it is even more difficult to show these emotions when other people expect you to show them, such as on Thanksgiving. The group talked about the importance of remembering the better times when trying to express gratitude and using images and visualization techniques to bring you to those better times. One member recommended using relaxation tapes and imagery to help mentally transform to a former place of happiness and calmness.
  2. Taking initiative
    Sister Margaret mentioned that gratitude happens when we take the initiative to name what we need and let it be known to others how we are feeling. This act shows courage, and courage is an essential part of feeling and showing gratitude. Taking initiative in showing gratitude can mean listening to others share their stories, sharing and hearing our own stories, and being an active and reflective listener. Sharing your story with someone can be healing, and being open and honest with someone will allow for your needs, and your appreciation, to be heard. One member stated that telling your story will allow for a weight to be lifted from your shoulders and a sense of freedom to be felt throughout.
  3. Dealing with anger
    Many of the SLE Workshop members have expressed how their anger towards lupus hinders their ability to show gratitude. One member talked about how it was impossible to get to the point of expressing gratitude until dealing with the anger associated with the pain, fatigue, and uncertainty of the chronic condition. However, the member also said that once overcoming anger, communicating gratitude towards doctors and family members seemed to flow naturally.
  4. Components of being thankful
    The components of being thankful, as described by Sister Margaret and the group members, include being spiritually centered, touching the inner part of the self, longing for inner peace and connection, and relations with the higher being or your own personal beliefs. One member said that in order to show thankfulness and gratitude it is essential to count your blessings and to search for and recognize the good things that you have. In essence, a grateful heart nurtures the heart. Sister Margaret also recommended several books to help us embrace gratitude, including Learning to Cope in These Anxious Times by Patrice J. Tuoht, and What Illness Can Teach Us About the Meaning of Life by Reverend Mary Kendrick Moore.

It is important to be patient with yourself when trying to reach a state of gratitude. Many members said that they yearn for something yet to come, but in the meantime, they will concentrate on how they are feeling at the moment and try to emotionally overcome the uncertainty of lupus. Our own definition of gratitude can affect how we live our lives with lupus, but can also serve as a healing tool. Like Sir Winston Churchill once said, “Gratitude is not only the greatest of virtues, but the parent of all the others.”

Sr. Margaret Oettinger
Director of Pastoral Care
Department of Patient Care and Quality Management
Hospital for Special surgery

Rosie Schwartz
National Post
Tuesday, January 31, 2006

Do you pride yourself on how consistent you are with what you put on your plate each day? Do you go for the same top-notch nutrition choices all the time? Well, it may be time to rethink your menu. Variety is more than the spice of life. When it comes to making food choices, it’s one of the keys to healthy eating. By consuming a wide assortment of foods, it’s a way to ensure that you hit all the bases in terms of the required nutrients like vitamins and minerals along with a range of phytochemicals—the disease-fighting compounds from plant foods. Eating a diverse selection also helps to take in smaller amounts of an assortment of substances from food you might want to avoid.

Mixing it up when it comes to fruits, vegetables, grains, nuts, seeds, spices, herbs and even various combos of foods offers a range of perks. Assorted fruits and vegetables are perfect examples. For instance, when you munch on an apple, you’re getting a certain type of antioxidant known as flavonoids—the same compounds responsible for red wine’s reputation as a heart-healthy choice. But when you have orange sections, you’re getting a separate mix of phytochemicals. Even eating a variety of apples provides different antioxidants. Opt for the citrus and along with the vitamin C and fibre, you’ll get the bonus of limonoids, substances which have been linked to protection against certain cancers. And like apples, varying your citrus delivers a mix of phytochemicals as well.

Even different berries offer diverse benefits. Raspberries are stellar when it comes to their fibre content plus they’re packed with anti-cancer substances. Have some cranberries and you’ll reap their anti-adhesive bacterial effects. Research shows that they may help to decrease the risk of certain types of infections by not allowing the bacteria to take hold. Or go for blueberries and their potential effects against cognitive decline.

Veggies also supply a cornucopia of nutritional goodies. The assorted hues and colours are sometimes a guide to an array of perks. The pigment of red tomatoes, lycopene, is linked to artery friendly action and a defence against prostate cancer while the purple ones found in some heirloom varieties are similar to the pigment that blueberries offer. Dark leafy green vegetables hail from an range of botanical families, each with different disease-fighting potential. Broccoli, arugula and watercress belong to the brassica family, one that’s the centre of study by cancer researchers.

Mushrooms, while considered to be a dieter’s best friend due to their low calorie counts, were once thought to be low on the nutritional scale because they didn’t stand out in terms of their vitamin and mineral content. But research is showing that they may possess some surprising attributes. Have some of the common button mushrooms and if you’re a woman, they may help to defend against breast cancer. But go more exotic with shiitakes and they’ve been shown offer advantages for immune system function.

Garlic, onions, leeks and shallots—all members of the allium family—while containing some similar nutrients have been shown to be like other typical families—no two relatives are exactly alike. Red onions with their pigments differ from their white cousins.

Season your dishes with herbs and spices from the Mediterranean or the Far East—basil, rosemary, parsley and sage or cumin, tumeric and coriander—and research shows that their taste and effects may range from antioxidant action to anti-inflammatory effects.

And when you fill your cereal bowl, always opting for 100% whole wheat means that you’ll miss out on the soluble fibre of oats. While whole wheat is a super source of insoluble fibre, the type that used to be called roughage, oats contain mainly the kind of fibre associated with blood-cholesterol lowering and better blood sugar regulation. So mix it up when you go with the grain by selecting an assortment from the wide range found these days.

The concept of variety also holds when it comes to the meat and alternatives group. Go for a piece of iron-rich beef every night and you could miss out on what legumes like kidney beans or lentils or fish may offer—low saturated fat counts along with either fibre or unsaturated fat. On the other hand, while it may seem like a healthy choice to go for some sort of soy food like tofu or a meat substitute on a daily basis for dinner, if you’re a post-menopausal woman, the verdict’s not in yet as to whether it’s wise to do so. Estrogen-like compounds in soy may boost the risk of breast cancer in some women of this age group. On the other hand, it may offer protection for others. If it sounds confusing, it’s simply that science doesn’t yet have the answers, so having a variety allows you to hedge your bets.

The perks of having a variety of foods also extends to opting for an assortment of preparations. Have your tomatoes raw and along with the vitamin C contained, you’ll likely consume the gel around the seeds which research shows have anti-blood clotting action. But have them cooked or canned and the amount of lycopene absorbed increases substantially. The same goes for the orange pigment in carrots, beta carotene. Just cooking these veggies a little boosts your beta carotene counts. And onions, when caramelized, retain their flavonoids, the same compounds found in apples. But garlic, if chopped and cooked straight away, loses some of its anti-cancer benefit. Research shows that if you chop it and allow it to sit for 10 minutes first, more of the cancer-fighting effects are maintained.

Varying cooking methods also allows for reducing levels of unwanted substances. For example, barbecuing meats at high temperatures can yield higher amounts of potential cancer causing substances like HCAs (heterocyclic amines) and PAHs (polycyclic aromatic hydrocarbons). Living in a northern climate, though, provides incentive for staying indoors and preparing stews and braised dishes rather than firing up the grill all year long.

As you ponder the concept of variety, there are a few basics to keep in mind. The foundation of a healthy eating pattern is best kept constant—choices from at least three out of four food groups at each meal. Another is that eating a variety of foods doesn’t mean that you can’t enjoy your favourites on a regular basis. It’s variety over time — not in a meal or over a day—that counts.

This article is part of the Lupus Canada “Ask The Expert” section with the permission of Rosie Schwartz.
Visit the National Post Website for more articles written by Rosie Schwartz.

Rosie Schwartz is a Toronto-based consulting dietitian in private practice and is author of The Enlightened Eater’s Whole Foods Guide: Harvest the Power of Phyto Foods(Viking Canada).

© National Post 2006