"The doctor's not answering my questions," is one of the most common complaints that I hear from lupus patients and their families. In fact, I had the same complaint when I was first diagnosed. After 14 days in the hospital, I finally had a diagnosis for what had been bothering me for 38 years-systemic lupus erythematosus. A month later, I visited my rheumatologist for a follow up appointment. I had three pressing questions:
1. Is this progressive?
2. Will I become disabled and lose my independence?
3. Will it kill me?
He could not honestly answer those questions. Why? Not because he was trying to keep information from me, but because there is no clear answer. I was diagnosed in 2003. Since then I have done a lot of reading and learning.
Is lupus progressive? It can be. But it can also go into remission. A medication that prevents or slows organ damage in one patient may not work on another. Lifestyle and attitude have a lot to do with how lupus behaves as well.
Will I become disabled and lost my independence? No one knows. Most cases are mild to moderate, but it can be disabling.
Will it kill me? Maybe...maybe not. Lupus patients do have higher risks for heart attacks and strokes. Organ damage can lead to death. But, with good medical management and a proactive approach most lupus patients live a normal life span.
So, my doctor was not keeping anything from me. Sometimes there are no answers!
Saturday, October 30, 2010
Saturday, October 23, 2010
If I had a dollar for every lupus (or substitute any other chronic disease) patient that tells me, “I’m not going to take medication. I hate pills. I am going to go organic (or green or natural),” I would be a rich woman today. I have to admit here, that was my first reaction, too! I did take my medication. 14 days in the hospital will scare you into doing that. But I dug out my copy of Nutritional Healing, certain that I would find the answer. The answer wasn’t there.
Avoiding chemicals in our food makes good sense. Our bodies, healthy or not, don’t need the added burden of having to deal with toxins. Most of us know that the plants we eat contain pesticides. Some of us realize that meat, chicken, eggs and dairy also contain growth hormones and antibiotics. Even fish are farmed these days. They too are given antibiotics. The ones that are caught in the wild will also carry pollution chemicals and things like mercury. An organic vegetarian diet eliminates a lot of the body burden of these chemicals. Those same patients who say they are “going natural” call six months later wondering why they aren’t cured. Could there be more to the story?
The same patient, who does not want to take drugs, does not realize that there are drugs in our water. Viagra, xanax, Prozac, hormones, antibiotics…you name it, it’s in the water. Discarded medications can end up in our water, but they are also excreted by people who take the drugs. You should know that while tap water in America is checked regularly for safety, bottled water does not have to meet the same standards. Yes, your bottled water could actually be worse. Check out www.ewg.org for more information. I have actually had several people tell me that drinking juice, soda, beer, or wine would protect them from the water!
Eating and drinking are not the only ways that chemicals get into our systems. We breathe in chemicals from household cleaners, synthetics (plastic, carpeting, fire retardant on clothes, paint, furniture, etc.), hygiene products, air fresheners, industrial pollution, and more. We absorb chemicals through our skin. Think about it…we have hormone patches, nicotine patches, and pain patches that deliver a slow and steady stream of medication through the skin. When we bathe, we are absorbing chlorine and other chemicals from the water. Body washes, hair products, lotions, cosmetics and other hygiene products contain endocrine disruptors.
Your endocrine system is made up of the glands in your body that produce hormones. These include the pituitary, thyroid, parathyroid, reproductive glands, adrenal glands, hypothalamus, and pancreas. The glands make hormones. Hormones regulate body function and development. Other organs in your body have receptor sites for specific hormones. Endocrine disruptors are chemicals that are close enough to hormones to attach to those receptor sites and prevent the real hormones from doing their job. In 2010, the federal government launched the Endocrine Disruptor Screening Program. They are taking this seriously.
Is it any wonder that 1 in 8 women will develop breast cancer in her lifetime? Is it any wonder that 23. 5 million Americans have autoimmune disease? Is it any wonder that 133 million Americans have chronic conditions?
Last week, I wrote that we are the canary in the coal mine. Our chronic diseases are a warning to the rest of the population that something is wrong, that something needs to change. While we can’t avoid all of these problems we CAN reduce the body burden of them by becoming informed and making different choices. I will write more about those choices in the coming weeks.
Endocrine Disruptor Screening Program http://www.epa.gov/endo/
Environmental Working Group on our water http://www.ewg.org/ourwater
Cosmetics Safety Data Base http://www.cosmeticsdatabase.com/
Avoiding chemicals in our food makes good sense. Our bodies, healthy or not, don’t need the added burden of having to deal with toxins. Most of us know that the plants we eat contain pesticides. Some of us realize that meat, chicken, eggs and dairy also contain growth hormones and antibiotics. Even fish are farmed these days. They too are given antibiotics. The ones that are caught in the wild will also carry pollution chemicals and things like mercury. An organic vegetarian diet eliminates a lot of the body burden of these chemicals. Those same patients who say they are “going natural” call six months later wondering why they aren’t cured. Could there be more to the story?
The same patient, who does not want to take drugs, does not realize that there are drugs in our water. Viagra, xanax, Prozac, hormones, antibiotics…you name it, it’s in the water. Discarded medications can end up in our water, but they are also excreted by people who take the drugs. You should know that while tap water in America is checked regularly for safety, bottled water does not have to meet the same standards. Yes, your bottled water could actually be worse. Check out www.ewg.org for more information. I have actually had several people tell me that drinking juice, soda, beer, or wine would protect them from the water!
Eating and drinking are not the only ways that chemicals get into our systems. We breathe in chemicals from household cleaners, synthetics (plastic, carpeting, fire retardant on clothes, paint, furniture, etc.), hygiene products, air fresheners, industrial pollution, and more. We absorb chemicals through our skin. Think about it…we have hormone patches, nicotine patches, and pain patches that deliver a slow and steady stream of medication through the skin. When we bathe, we are absorbing chlorine and other chemicals from the water. Body washes, hair products, lotions, cosmetics and other hygiene products contain endocrine disruptors.
Your endocrine system is made up of the glands in your body that produce hormones. These include the pituitary, thyroid, parathyroid, reproductive glands, adrenal glands, hypothalamus, and pancreas. The glands make hormones. Hormones regulate body function and development. Other organs in your body have receptor sites for specific hormones. Endocrine disruptors are chemicals that are close enough to hormones to attach to those receptor sites and prevent the real hormones from doing their job. In 2010, the federal government launched the Endocrine Disruptor Screening Program. They are taking this seriously.
Is it any wonder that 1 in 8 women will develop breast cancer in her lifetime? Is it any wonder that 23. 5 million Americans have autoimmune disease? Is it any wonder that 133 million Americans have chronic conditions?
Last week, I wrote that we are the canary in the coal mine. Our chronic diseases are a warning to the rest of the population that something is wrong, that something needs to change. While we can’t avoid all of these problems we CAN reduce the body burden of them by becoming informed and making different choices. I will write more about those choices in the coming weeks.
Endocrine Disruptor Screening Program http://www.epa.gov/endo/
Environmental Working Group on our water http://www.ewg.org/ourwater
Cosmetics Safety Data Base http://www.cosmeticsdatabase.com/
Saturday, October 16, 2010
Canary in the Coal MIne
A recent post in Yahoo! Answers suggested that people with chronic conditions like lupus and multiple sclerosis should just be allowed to die because this is part of the process of natural selection of survival of the fittest. Needless to say, I was outraged. I replied that this kind of thinking was a cancer that might need surgical removal!
Many people who are healthy are afraid they will get a chronic condition. In order to assure themselves that this won’t happen, they actually make up reasons why they are invulnerable. That’s what the writer on Yahoo did. The truth is that those of us with chronic illnesses are the canary in the coal mine. Our diseases are a warning that something is horribly wrong. Many chronic conditions are caused by stress, poor nutrition, lifestyle choices and lack of exercise. It takes years, even decades before the damage becomes apparent. The role of some manmade chemicals has already been documented in causing cancer. Much has not yet been documented. We are eating pesticides, growth hormones, and antibiotics in our meat. We eat genetically modified plants. We are inhaling volatile organic compounds from our furniture, paint, flooring, and clothing. We are drinking pharmaceuticals in our water-yes even bottled water! Just like the canary in the coal mine that dies in the presence of relatively small amounts of toxic gas and serves as a warning for miners that there is toxic gas, so too, those of us with chronic conditions are actually a warning that may save the lives of others if they pay attention.
While we can’t eliminate all of these things from our lives, we can begin to reduce the body burden of them by making wiser choices. The posts in the coming weeks will focus on how we can be proactive.
Did you know that 23.5 million Americans have autoimmune diseases?
Many people who are healthy are afraid they will get a chronic condition. In order to assure themselves that this won’t happen, they actually make up reasons why they are invulnerable. That’s what the writer on Yahoo did. The truth is that those of us with chronic illnesses are the canary in the coal mine. Our diseases are a warning that something is horribly wrong. Many chronic conditions are caused by stress, poor nutrition, lifestyle choices and lack of exercise. It takes years, even decades before the damage becomes apparent. The role of some manmade chemicals has already been documented in causing cancer. Much has not yet been documented. We are eating pesticides, growth hormones, and antibiotics in our meat. We eat genetically modified plants. We are inhaling volatile organic compounds from our furniture, paint, flooring, and clothing. We are drinking pharmaceuticals in our water-yes even bottled water! Just like the canary in the coal mine that dies in the presence of relatively small amounts of toxic gas and serves as a warning for miners that there is toxic gas, so too, those of us with chronic conditions are actually a warning that may save the lives of others if they pay attention.
While we can’t eliminate all of these things from our lives, we can begin to reduce the body burden of them by making wiser choices. The posts in the coming weeks will focus on how we can be proactive.
Did you know that 23.5 million Americans have autoimmune diseases?
Saturday, October 9, 2010
Two Handed Journaling
During a Mindfulness Based Stress Reduction workshop that I recently took we were asked to do what I call "two handed journaling." I did it years ago when I was working through some old emotional wounds that just didn't seem to want to heal. This is a very simple but powerful technique to get in touch with yourself, or parts of yourself that you often ignore.
Start with your dominant hand, the one you write with. Write a simple question like, "How are you doing today?" Pause. Take the pen in your non-dominant hand and write an answer. From there, continue the dialogue for a while, alternating hands. If you get a chance, please share your experience with me!
Start with your dominant hand, the one you write with. Write a simple question like, "How are you doing today?" Pause. Take the pen in your non-dominant hand and write an answer. From there, continue the dialogue for a while, alternating hands. If you get a chance, please share your experience with me!
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