The Positive Side

Spring 2003 

In • te • grate

To make whole or complete by adding or bringing together parts. To unify.

By Barb Findlay

HAVE YOU EVER used acupuncture to lessen your pain or fatigue? Taken echinacea, zinc and marshmallow root for a sore throat? Practiced guided imagery or breath work to help you settle to sleep at night? If so, you’re not alone!

Nearly half of all Canadians are taking a more individualized approach to their health care these days — choosing to combine safe therapies, products and practices from across health belief systems in a way that works for them. Most often, it’s people living with chronic illness who seek complementary ways to manage their symptoms and improve their quality of life. Those living with HIV/AIDS are perhaps the strongest advocates for this type of health care, as many who were diagnosed before Western pharmaceutical treatment was available relied on things like nutrition therapy, mindbody awareness and traditional medicines to keep them well. And women more often than men are drawn toward this holistic way of understanding and managing their often-complex health concerns.

I often wonder about the relationship between women and integrative health care. Has it evolved as a result of women’s historic “health-tending” role in our families and communities, and the natural opportunity for exploration that this role provides? Does it have anything to do with the verbal sharing of health stories, experiences and outcomes that women are so comfortable with? Does it sadly reflect firsthand knowledge of the relationship between emotional dis-ease and the onset of chronic illness in women? Is it supported by a gender preference for “process” over “solution”? If so, how does this translate into health-seeking behavior and choices?

The Tzu Chi Institute in Vancouver, British Columbia, has a vested interest in answering some of these questions. As Canada’s leading advocate for integrative health care, the nonprofit institute is committed to expanding the possibilities for wellness and quality of life in our society. Our work is carried out through clinical research and information/education initiatives and partnerships.Women comprise 70% of our clients, the majority of them reporting three or more health concerns — most related directly to a chronic illness.We are deeply interested in the reasons people are attracted to integrative health care. A main focus of our research is to explore the decision-making process people engage in around “integration,” their eventual choices and, of course, the related health outcomes.

Evaluating the effectiveness of an integrative approach is a critical next step for organizations like ours. Funders of health care, such as the provincial ministries of health, want to know if there is a cost-benefit to the health care system when people engage in integrative health practices. Do they have fewer emergency room visits? Do they use fewer pharmaceuticals to manage symptoms? Do they visit their family doctors as often? How much are they spending outside of the publicly funded system?

For this type of research to be sound, integrative health care must be defined clearly enough to measure results within a consistent framework.While there’s no widely accepted definition in this emerging field, there is growing agreement among patients, health care providers and researchers that it embraces many of the following principles:

  • It’s based on an equal partnership between patient and practitioner and honours the patient as the expert of his or her own health.
  • It involves care and treatment of the whole person — mind, body, spirit.
  • It enhances a person’s built-in healing abilities.
  • It favours “working with people” over “doing to people.”
  • It values quality of life and wellness outcomes as highly as it does a cure.
  • It acknowledges synergy as a healing principle: The whole is greater than the sum of its parts.
  • It employs an interdisciplinary, collaborative approach to care and decision-making.
  • It respects diversity.

Over the past decade, the emergence of integrative health care has begun to push at the edges of our publicly funded health care system — nudging it toward a more respectful, collaborative way of being. As witness to this evolution, I am humbled by the thought that this movement was initially driven by a handful of courageous individuals determined to take an integrative approach to their own healing without the benefit of scientific evidence or the increased professional awareness that exists today. I have no doubt that many of them have been women living with HIV/AIDS.

Barb Findlay is the executive director of the Tzu Chi Institute. She is also a CATIE Board member. At press time, the Institute regretted to announce that it was closing as a result of government funding cuts.

Penny Bradford, 50

Diagnosed with HIV: 1992; CD4 count: 390; Viral load: undetectable. Chair of the Victoria Persons With AIDS Society. Victoria, BC.

I’D LIKE TO SHARE some words of hope with other women. When I was diagnosed, at 40, I didn’t think I’d ever get to see any of my grandchildren. I thought I was quite a long way from being a grandmother, and this really made me sad. In 1996, though I was very reluctant to believe in them, I started on the new medications. After being on and off them for the past six years, I now feel very hopeful. I’m expecting my second grandchild! It’s such a joy in my life! I’m so glad I didn’t miss it. Thanks to the meds and complementary therapy, I feel much better than I used to.

I’m very open-minded. I take vitamins and supplements. I do yoga. Through yoga I’m learning the art of being kind to myself and listening to my body. I have acupuncture and chiropractic treatments regularly and have just recently started Ayurvedic and homeopathy treatments as well. I’m trying to be more nutrition-minded. Regular walks are next on my agenda.

I’ve been meaning for a long time to get into meditation; one of these days I’ll make it. I’m trying to have quiet evenings at home, when I don’t turn anything on: no TV, music, nothing — just silence. I believe in mind, body and spirit — they all go together. I find prayers helpful. And I’m really learning a lot about my boundaries. Don’t give more than you’ve got. Know where your line is. I’m getting to know where my line is more and more each day. I try to be whole and happy, try to strive toward balance in my life: so much time for volunteering, so much time for myself and my grandchildren. I haven’t achieved this balance yet — and I don’t know if I ever will — but it’s an ongoing process.

Hazra, 46

Diagnosed with HIV: 1994; CD4 count: 1,100; Viral load: undetectable. Aromatherapist. Reflexologist. Reiki practitioner. Student. York Region, Ontario

AFTER MY DIAGNOSIS, I started seeing a naturopath, who works together with my doctor. I take homeopathic remedies, supplements and herbs. My naturopath designed a special program for me that includes vitamins C and B and N-acetyl-cysteine (NAC). Depending on what’s going on in my body, I add other things. For example, I take folic acid because at some point I started having abnormal cells in my cervix. Calcium and magnesium help me deal with cramps. I also take evening primrose oil. Recently I added alphalipoic acid because, due to the medication, my triglyceride and cholesterol levels were going up. This supplement will bring them down and help normalize my metabolism.

Homeopathy takes into account not only the physical but also the spiritual and mental aspects of one’s well-being. When I started it, there were a lot of emotional issues coming up for me. I started seeing a psychotherapist and working through those issues, such as the fears inside me that I was holding in. The more I did that, the better I felt. I started to forget that I was HIV+. I’m still in therapy. A few years ago I debated whether or not to start the meds, as my doctor thought it was a good idea. I had a good talk with my naturopath, weighing the pros and cons, and decided to do so. But meds alone weren’t going to be enough for me; I also intended to go on with my supplements. When I started the meds, it seemed that the nutrients were replenishing my body and my immune system was getting stronger. My T cells have gone up from 300 to 1,100. My health has improved tremendously.

I’ve gradually learned the importance of listening to my body. I used to keep getting candidiasis, so I took all the sugar and yeast out of my diet. When I had a fungal infection, changing my diet helped it go away in a few months. Now I sometimes just look at a certain food and if my body screams, telling me not to have it, I listen. When I find that my body is getting tired and says “I can’t take anymore,” I rest, not necessarily sleep, but read a book or meditate. Even prayers help, and it doesn’t necessarily mean that one has to belong to a certain religion.

Robyn, 33

Diagnosed with HIV: 1993; CD4 count: 680; Viral load: undetectable. Homemaker. St. John’s, Newfoundland

I LIKE TO EAT WELL. I’d like to eat better, but unfortunately the cost of “better” is much more expensive. I try the best I can. I try to get things I can afford: a bit of lettuce, a tomato, broccoli. I take multivitamins. That’s pretty much it. I get $187 every two weeks, and I have to feed myself and my two children, and buy clothes and what not! When worse comes to worse, there’s always a food bank. You have to do what it takes.

Complementary therapy is expensive, and I need money for transportation. Anything of any cost that makes your life better is a tough choice, as you have to sacrifice something. The AIDS committee here has a PWA fund, and massage therapy was one of the things that used to be funded for people who needed it. Now they’ve cut it, together with some staff, and the funds are dropping every year. Less and less services are available for people like me.

Sheri Quinn, 36

Diagnosed with HIV and hepatitis C: 1993; CD4 count: 800; Viral load: 1,500. Community worker at CRISS (Centre de Ressources et d’Interventions en Santé et Sexualité); English editor, de tête et de coeur (CRISS newsletter). Montreal (Quebec)

I DON’T TAKE MEDICATION because, after nine years, my immune system is still strong. I don’t know why the virus doesn’t seem to be progressing. I take vitamins every day to help keep my immune system balanced. I don’t know if this is why I’m still healthy or if it’s because of a certain gene I have or something. I take Moducare, plant sterols and sterolins which are known to help maintain CD4 cells. I also take antioxidants in the form of whey protein and a multivitamin called Greens Plus. I prefer my supplements in powdered form because I feel that my body absorbs them better. (Plus, there’s no sales tax in Quebec on vitamins in powdered form.)

Complementary therapy for me is not only vitamins and minerals. I believe in a holistic, healthy lifestyle, which one reaches through meditation, exercise, eating and sleeping properly, keeping stress down, not doing drugs and not drinking too much. I have a drug history, so staying off drugs is important for my health and sanity. I try to make this integrated lifestyle the most important part of my life. To relieve my stress, I meditate, exercise and talk about what’s stressing me out.

HIV and hepatitis C co-infection is an issue we don’t talk about enough. There’s a lack of information in this area. Hepatitis C treatment has very heavy side effects, is very toxic and doesn’t work for everybody. People should be aware that there are natural alternatives to detox the liver and lower the enzymes. For example, antioxidants can be helpful. Before I try the treatment — with its level of toxicity and terrible side effects — I will try every single root, herb or plant I can find.

Minneh Kamau, 34

Diagnosed with HIV: 1993; CD4 count: 290; Viral load: undetectable. Volunteer at AIDS Vancouver Island and Victoria People with AIDS Society. Public relations officer at the Cannabis Bias Club. Victoria, BC

WHEN I WAKE UP in the morning I do a smudge — a Native ritual that cleanses me and allows me to meditate about my body and what it is feeling. I learned this from the First Nations people in Canada. All I know about it is that it cleanses energy around the person. You put some sage (not green sage) in a shell, and I have an eagle feather that I use. I set the sage on fire; it bursts into flames and has this very sweet smell. I use the ash to cleanse my face and body. When I do this, I also say: “May my hands do good work, may my brain think good thoughts, may my eyes see you, may my ears hear you, may my mouth speak the truth, may my heart be connected to you. Bless the womb, the fruit of life. May my feet walk the right path.” It calms me down, it makes me understand that yesterday is gone and I can start a new day. There is always a beginning and an end to everything, and I never really thought about it before. Before my HIV and coming to Canada, I didn’t know this! This ritual helps me with my depression and to maintain a positive mood.

Andrea Rudd, “over 40”

Diagnosed with HIV: 1988; CD4 count: 1,317; Viral load: undetectable. Artist. Works at various community-based organizations. Toronto, Ontario

I FOUND OUT I was HIV+ because I got very ill, first with shingles and a few months later, pneumonia. So it’s kind of amazing what good shape I’m in now. I attribute some of it to my constitution: I have good genes and come from a strong stock! But the other thing is that I’ve been careful about what I consume and I’ve been taking supplements for the past 14 years. So, the fact that my blood work is so good and my cholesterol and all my counts are normal (my good cholesterol is high!) is also due to (besides the drugs), I believe, diet and nutritional supplementation. I take a lot of supplements — vitamins, minerals, essential fatty acids. I generally try to eat more organic, whole foods and less refined foods. I don’t drink alcohol or smoke or do any other drug. Occasionally I go through periods when I get into chocolate (which I consider to be an essential food) and coffee.

It’s very costly to take nutritional supplements all the time, but that’s always been a priority for me, so I’ve found ways around it. I worked at a supplement store part-time, so I got a discount. I’m the founder of the Treatment Fund at Voices of Positive Women, which has been going on for about seven years (it was started with a generous donation from comedian Sandra Shamas). We give out either a good quality nutritional supplement package or we reimburse Voices members throughout Ontario for complementary therapies. I’m proud of this program; it would be good if more organizations would start similar ones. Recognition and support of complementary therapies as treatment for HIV is long overdue.

Brigitte Charbonneau, 56

Diagnosed with HIV: 1994; CD4 count: 775; Viral load: undetectable. Vice-chair of Bruce House. Ottawa, Ontario

LACK OF APPETITE is a side effect I get. I use pot to help me with this. If I smoke before breakfast, I get the munchies, raid the fridge and eat anything I can find. But I don’t smoke it around my grandchildren, so it’s difficult for me to eat when they’re around. My meals are half the size of those of my 8-year-old granddaughter.

In the summer, I’m a vegetable and fruit freak, but I can’t eat it a lot of it now, it’s too rough for my stomach. I have to be very careful with what I eat now, especially if I’m going somewhere where there may be problems with a bathroom, because it just happens.

Valerie Ashton, 54

Diagnosed with HIV: 1999; CD4 count: over 700; Viral load: below 30. Regina, Saskatchewan

I WAS DIAGNOSED with HIV after I went into the hospital with pneumonia. When I came home, I had this feeling as if I’d died and come back. I hadn’t gone to church in a long time; I stopped after I lost my son in a car accident in 1984. The pain from my loss devoured me and I started partying to get rid of it. When I became HIV+ I wanted to get back into church.

After I was diagnosed, I started seeing people in a different way. I have this yearning in my heart to help others. I want to reach out, to let people know that I know what it’s like, I’ve been there. I find it hard to be my age and living with HIV. If not for my faith, I don’t think I’d have the strength to be here today. I have nine grandchildren from my two daughters. The Lord has really blessed me! But I don’t have any friends who are HIV+ and I’d like to meet more people living with the virus. I have so much to share with them and so much kindness to offer.