Sunday, November 28, 2010

What Would Feel Good?

The holidays are always an uneasy time for me. When I was still the queen of Thanksgiving and Christmas, I thought that the uneasiness came from juggling all the family obligations, work, and the fact that I always got sick over the holidays. But almost a decade ago I gave the tiara to my daughter-in-law who does a wonderful job. All I have to do is show up. I thought part of the uneasiness came from my work which involves countless rehearsals and performances at this time of year. But after 40 years, I really have that under control.

About a week before Thanksgiving, the cloud of uneasiness appeared. I felt tired, but couldn’t really relax to rest. I felt like I should be working on something, anything, but could not get engaged. I stopped exercising. I didn’t cook but grazed on things like bean dip and crackers, apples and peanut butter. I slacked on flossing my teeth. (This is important because I have a bunch of bridges!)

When the cloud of uneasiness comes, I forget what feels good. If I do remember, I can’t muster the motivation to do it. The spiral goes down. The first couple of years after I was diagnosed with lupus were all spent in the cloud of uneasiness. Of course, I felt miserable then, so I could use my health as an excuse. Now I am in remission and don’t have that excuse.

I sat down to remember what makes me feel good. When we are feeling bad, it’s easy to forget what feels good. I feel good after I take a long walk. This afternoon I walked 4 miles along the bay. I feel good when I take a 10 minute cat nap. I took a nap. I feel good when I am reading and I feel good when I have a change of surroundings. Saturday, I curled up in a comfy chair at the library and read two magazines cover to cover. Friday, I sat by the pool at my condo and read an entire book.

A good friend sent me a link to someone’s blog post about how she comes back to herself when she writes. I feel good when I journal. Before I sat down to journal, I sat for meditation for a long time. This afternoon I wrote in my journal. Meditation and journaling feel good.

When I feel bad or uneasy, I forget what feels good. Tonight I printed a list and posted it on my bulletin board. What makes YOU feel good?

Thursday, November 25, 2010

Chronic Illness and Thanksgiving

The first Thanksgiving after I was diagnosed with systemic lupus erythematosus, I couldn’t find much for which to be thankful except that I was still alive. I was in constant pain. I felt like I had an unremitting case of the flu for over six months. I had lost both my jobs and had no income. A kidney biopsy the month before Thanksgiving confirmed lupus nephritis and I had started on chemotherapy. When you have a chronic illness, it’s often hard to find reasons to be thankful.

Seven years later, my lupus is in remission. The remission is chemically induced, but I’ll take any remission that comes my way! Reflecting back, I am actually thankful for my lupus. That probably sounds very strange. Why would I be thankful? Lupus robbed me of so many things-ability to work, ability to do many activities of daily living, my identity and my self esteem. There was nothing left but me, breathing. I have since built an amazing new life. I would never have taken the risk of eliminating things from my life and adding some new ones if I hadn’t first been empty because of my chronic illness.

Today, I am healthier than I have been at any other time in my life, in spite of the lupus. So today, in addition to giving thanks for all the good things in my life, I am also giving thanks to lupus that gave me the opportunity to build a new life.

Tuesday, November 16, 2010

Whose Disease Is It?

Is it my lupus? Is it her breast cancer? Is it his Lou Gehrig’s disease? Is it her learning disability? Is it his autism? Is it his heart attack? Is it her stroke? On the surface, the answer is, “Yes.” No healthy person in their right mind wants to own our disease or disability-quite the opposite. They do their best to rationalize why they are safe, even invincible. We know better. We used to be them.

Who polluted the earth, the water and the air? Who created pesticides and volatile organic compounds? Who created genetically modified food? Who injects animals and fowl with growth hormones and feeds them antibiotics? Who put endocrine disruptors in our soap and clothing? Who created a high stress, sedentary lifestyle that leads to so many diseases? We are all responsible and we are all vulnerable. My disease and your disease are everyone’s disease. The cure is everyone’s business.

Certainly, the task is overwhelming. That’s OK. Each person does not have to do it all. We can make small changes, each and every one of us. We can become aware of how we, as a species, are causing our own extinction and making ourselves sick. The first step to change is always awareness. The next step is to gather information. Then it is time to act.

The Environmental Working Group has two lists: The Dirty Dozen and the Clean Fifteen. You can download a wallet card of the Environmental Working Group Guide to Pesticides here You can reduce your exposure to pesticides by buying organic whenever possible. The Shopper’s Guide will help you determine which fruits and vegetables have the most pesticide residues and so are the most important to buy organic. You can lower your pesticide consumption by nearly four-fifths by avoiding the 12 most contaminated fruits and vegetables and instead eating the least contaminated produce, according to EWG calculations.”

I can hear some of you thinking, “Well then, I will stop eating fruits and veggies and only eat meat!” The birds and animals that we eat consume the pesticide laden plants. The higher up the food chain you go, the more concentrated the pesticides. And remember, the birds and animals are also given growth hormones and antibiotics. Farmed fish (and a lot of fish are farmed) are also given antibiotics routinely.
Small choices and small changes, one by one, make a big difference.

Saturday, November 13, 2010


When you have a chronic illness, you have to be able to balance things. Sometimes we barely have enough energy to do the things we really need to get done like basic activities of daily living. Sometimes we do have enough energy. Then something comes along that we WANT to do, like a special event or activity. Those are the times that require some very careful balancing.

Do we do the thing we HAVE to do, then go on and do the thing we WANT to do knowing full well that we may crash the next day? Do we let essential things slide and just do the thing we want to do and try to catch up later? Do we skip the thing we WANT to do becase we are afraid of the physical consequences, and then sit and stew about it? If we do commit to doing the fun thing, will we have to cancel at the last minute because we just don't feel up to it? Will our friends be angry? Will they think we are faking it?

There is no right answer. Each day, each challenge is different. We may take on too much. We may not take on enough. But every day we strive for balance.

Saturday, November 6, 2010

Making Ourselves Sick

Yesterday I met a few neighbors for the first time. During that brief conversation, one woman, just a little older than I, told me that she has written a book on the Vietnam War and Agent Orange. She has leukemia as a result of her exposure to this chemical that was used to destroy the vegetation in the jungles of Vietnam. I was sad as I thought about how many people’s lives were damaged and cut short by Agent Orange. No one knew the long term impact of this chemical. Half a dozen or so companies manufactured Agent Orange. A class action suit was filed against these companies in 1979. The suit was settled out of court in 1987 for $180 million.

We aren’t being exposed to Agent Orange today but we are being exposed to all kinds of things that have the potential to cause long term damage to our health. Monsanto was one of the manufacturers of Agent Orange. Today Monsanto makes Roundup, a weed killer. In fact, Roundup is the world’s best selling herbicide. Roundup is marketed to commercial farmers and home owners. Monsanto is also the largest seller of genetically modified seeds. In fact, the herbicide and the seeds are often marketed together. What’s the selling point? These genetically modified plants are resistant to the herbicide! We get to eat the herbicide in the plants. Just like we were told that Agent Orange was safe, so now are we being told that Roundup and genetically modified foods are safe. This is certainly food for thought, especially when we reflect on how many people have chronic diseases that have no known cause-lupus, rheumatoid arthritis, fibromyalgia, multiple sclerosis, etc.

In the United States, almost all of our soy and corn crops are genetically modified (GMO) and most of those seeds are engineered by Monsanto. 68% of corn and 90% of soy in the US are genetically modified. Soy and corn products are in almost all pre-packaged prepared foods. Food manufacturers do not have to reveal the fact that the food has GMO ingredients. In fact, the big food industry has fought to prevent organic companies from labeling their products as GMO free!

It’s nearly impossible to eliminate these products from your diet, but you can reduce your exposure or body burden. Be informed and read labels. Did you know that Starkist Tuna has soy in it? Is lecithin an ingredient in your food? Lecithin comes from soy. Awareness is the first step on the way to change. We can change our buying habits. We can spread the word. We can’t change what has already happened, but we can be influence the future.