The Twelve Days of Lupus
On the first day of Christmas, my lupus gave to me
A bad pain in both of my knees
On the second day of Christmas, my lupus gave to me
A creepy rash
And a bad pain in both of my knees
On the third day of Christmas, my lupus gave to me
Hair falling out
A creepy rash
And a bad pain in both of my knees
On the fourth day of Christmas, my lupus gave to me
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees
On the fifth day of Christmas, my lupus gave to me
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees
On the sixth day of Christmas, my lupus gave to me
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees
On the seventh day of Christmas, my lupus gave to me
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees
On the eighth day of Christmas, my lupus gave to me
Bone crushing fatigue
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees
On the ninth day of Christmas, my lupus gave to me
Red, white, blue fingers
Bone crushing fatigue
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees
On the tenth day of Christmas, my lupus gave to me
Protein in my urine
Red, white, blue fingers
Bone crushing fatigue
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees
On the eleventh day of Christmas, my lupus gave to me
Butterfly on my face
Protein in my urine
Red, white, blue fingers
Bone crushing fatigue
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees
On the twelfth day of Christmas, my lupus gave to me
Trashed self-esteem
Butterfly on my face
Protein in my urine
Red, white, blue fingers
Bone crushing fatigue
Seven brand new lab tests
Six new red mouth sores
Dense lupus fog
Stiff, achy fingers
Hair falling out
A creepy rash
And a bad pain in both of my knees
Wednesday, December 22, 2010
Saturday, December 4, 2010
Inspiration
How often do you hear or read something that touches you deeply? How often do you think, "I need to remember that?" How often does that flicker of inspiration get lost an hour later?
Years ago, at a very hard point in my life, a good friend shared his own book of inspiration. This was not a book, but just a bunch of quotes printed out and placed in a notebook. His quotes were helpful to me.
Over time, I forgot about the inspirational quotes. Then, as I was learning to live with lupus, I started keeping my own book of quotes.
I am reading It's Not the End of the World by Joan Borysenko, one of my favorite authors. Here are some quotes that really spoke to me:
"Resilience is a reflex, a way of facing and understanding the world, that is deeply etched into a person's mind and soul."
"Those who have a 'why' to live for can bear with almost any 'how.'"
"The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails."
"What's your habitual story about why bad things happen?"
Consider getting a notebook and writing down the things that inspire you, the things that make you feel good, the things that bring you back to who you are.
Years ago, at a very hard point in my life, a good friend shared his own book of inspiration. This was not a book, but just a bunch of quotes printed out and placed in a notebook. His quotes were helpful to me.
Over time, I forgot about the inspirational quotes. Then, as I was learning to live with lupus, I started keeping my own book of quotes.
I am reading It's Not the End of the World by Joan Borysenko, one of my favorite authors. Here are some quotes that really spoke to me:
"Resilience is a reflex, a way of facing and understanding the world, that is deeply etched into a person's mind and soul."
"Those who have a 'why' to live for can bear with almost any 'how.'"
"The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails."
"What's your habitual story about why bad things happen?"
Consider getting a notebook and writing down the things that inspire you, the things that make you feel good, the things that bring you back to who you are.
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?
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.
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?
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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 http://www.foodnews.org/walletguide.php. 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.
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 http://www.foodnews.org/walletguide.php. 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
Balancing
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.
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.
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.
Saturday, October 30, 2010
Sometimes There Are No Answers
"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!
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 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!
Saturday, March 27, 2010
If I Can't Get Better, Why Bother?
I was facilitating a chronic disease self management workshop in an assisted living facility last week. Everyone in the group had multiple health problems. Quite a few of the people were over 90 years old! Halfway through the first session, one of the younger folks piped up. "I have incontinence. If you can't fix that, I don't think I should come back anymore." This was a tough one for me. I had to ask myself how she could benefit from the workshop. Then I responded, "No, we can't fix your incontinence, but if you stick it out through the class, you will be able to figure out ways to live a better life in spite of your problem." She stayed.
At the end of each session, we make action plans for the coming week. After quite a bit of discussion, this lady came up with a plan. For three days this week, she would go to the bathroom at regularly scheduled times, going before she experienced urgency. She tied some of the times to meals to make them easier to remember-before breakfast, mid-morning snack, before and after lunch, mid-afternoon snack, before and after dinner. If she found the plan helpful she was certainly free to do this everyday. But knowing that we all forget things at times, the plan is for just three days. By the time she comes back, she will probably have been successful for more than the three days.
When we have health problems, it's easy to give up. We just stop trying. After all, if we aren't going to get better, why bother? The truth is that we can always do something to improve the quality of our lives. Grandiose plans are doomed to fail. Failure makes us want to stop trying. We feel bad enough, why add failure to the mix? But if we make very small reasonable plans, we start to build successes. Each success gives us the courage and the desire to do more. What small thing can YOU do to make your life better this week?
At the end of each session, we make action plans for the coming week. After quite a bit of discussion, this lady came up with a plan. For three days this week, she would go to the bathroom at regularly scheduled times, going before she experienced urgency. She tied some of the times to meals to make them easier to remember-before breakfast, mid-morning snack, before and after lunch, mid-afternoon snack, before and after dinner. If she found the plan helpful she was certainly free to do this everyday. But knowing that we all forget things at times, the plan is for just three days. By the time she comes back, she will probably have been successful for more than the three days.
When we have health problems, it's easy to give up. We just stop trying. After all, if we aren't going to get better, why bother? The truth is that we can always do something to improve the quality of our lives. Grandiose plans are doomed to fail. Failure makes us want to stop trying. We feel bad enough, why add failure to the mix? But if we make very small reasonable plans, we start to build successes. Each success gives us the courage and the desire to do more. What small thing can YOU do to make your life better this week?
Saturday, February 6, 2010
Passport to the Land of the Sick
133,000,000 Americans have a chronic medical condition or illness. 23,500,000 Americans have an autoimmune disease. Of all the 20 year olds working right now, 3 out of 10 will end up on disability. The population of the United States is about 304,000,000. Lots of us are sick.
Yet, each one of us feels like we are the only one. We feel stigmatized, alone, isolated, damaged, hopeless and helpless. In my darkest time with lupus, I would go to sleep praying that I would not wake up in the morning. When that prayer turned to figuring out how to make it happen, I went for help. But the help didn't have a clue. So, I decided to figure out how to live with lupus.
These days I am nothing short of a chronic illness missionary. We may have chronic diseases but that does not mean our lives are over. Writing in Illness as Metaphor, Susan Sontag describes disease as a passport that takes us from the land of the well to the land of the sick.
Try to imagine a culture very different from yours, as different as you can imagine. Everything is different: the language, social rules, dress, religion, etc. Now imagine yourself permanently transported to that culture. What would you do? How long would you expect the new culture to conform to your ideas? How long would you isolate yourself? How willing would you be to learn about this new culture? Would you give up and spend the rest of your life bemoaning your situation or would you find a way to incorporate this new culture into your life?
We have been given a passport to the land of the sick and there is no going back. Everything is different. We have a choice. We can be angry, isolate ourselves, and expect the healthy world to conform to us, or we can find ways to incorporate this new culture into our lives. We have a choice.
Yet, each one of us feels like we are the only one. We feel stigmatized, alone, isolated, damaged, hopeless and helpless. In my darkest time with lupus, I would go to sleep praying that I would not wake up in the morning. When that prayer turned to figuring out how to make it happen, I went for help. But the help didn't have a clue. So, I decided to figure out how to live with lupus.
These days I am nothing short of a chronic illness missionary. We may have chronic diseases but that does not mean our lives are over. Writing in Illness as Metaphor, Susan Sontag describes disease as a passport that takes us from the land of the well to the land of the sick.
Try to imagine a culture very different from yours, as different as you can imagine. Everything is different: the language, social rules, dress, religion, etc. Now imagine yourself permanently transported to that culture. What would you do? How long would you expect the new culture to conform to your ideas? How long would you isolate yourself? How willing would you be to learn about this new culture? Would you give up and spend the rest of your life bemoaning your situation or would you find a way to incorporate this new culture into your life?
We have been given a passport to the land of the sick and there is no going back. Everything is different. We have a choice. We can be angry, isolate ourselves, and expect the healthy world to conform to us, or we can find ways to incorporate this new culture into our lives. We have a choice.
Friday, January 22, 2010
Letting Go-Again!
When I left my second husband in May of 2002, I grabbed an armful of clothes and my blow dryer. I wasn’t running from something horrible like violence. I just could not stand my life the way it was. So I left. The only thing I went back for was the computer. I guess that says something about my priorities-clothes to cover the body, not having to go out with bed head, and the internet!
Slowly, I built a new life with new “stuff” in it. I loved my little apartment overlooking the pond. Then BINGO lupus crash! The first stuff to go was my ability to work, and therefore my jobs. A lot of the time, I struggled to pay for my medical care and food. But when a little extra money came my way, I treated myself to something at the Dollar Store or half price day at the thrift stores. I sold many of my books on half.com as my passion for music, church music, and spirituality turned into a new course of learning how to live as a citizen in the land of the chronically ill.
Four years after the crash, I tentatively and timidly went off disability and back into the work force-that was January of 2007. For three years now, I have hung onto the “stuff” of that disability period. I have notebooks full of ways that I thought I would make a living when I couldn’t even stay awake for three hours in a row! In my closet I have a pysanky kit. Pysanky are Ukranian batik Easter eggs. A really good ostrich pysanky can bring $400. Then there is a notebook with the course of “how to become a medical biller and coder at home.” And let’s not forget the plethora of Christmas ornament instructions, including how to make “icicles” out of thin sheets of tin. Mind you, I could not even grasp a tea cup but I was going to use tin snips to make the icicles! The under-the-bed plastic boxes are full of fabric that I bought on sale with the expectation of saving money by sewing. I have carted some of it around for 7 years now! By the way, I never did make a $400 ostrich egg.
Sometimes we let go because we will suffocate if we don’t. Sometimes circumstances or disease make us let go as we are robbed of our ability and security. Other times, we recognize that it’s time to start a new chapter and we choose to let go. As my life takes me to places I never dreamed I would go, I find that it’s time to let go of stuff again. As I slowly sort through my “stuff” I am remembering periods in my life, treasuring them, and letting go so I can move forward once again.
There is a wonderful story about people in Africa who catch monkeys to eat them. (OK that’s gross, but get over it.) The people take a jar with a narrow neck and put fruit in the jar. The monkeys stick their hands in the jar but can’t pull them out while holding the fruit. They won’t let go of the fruit so they get caught and well, you know what happens next!
Slowly, I built a new life with new “stuff” in it. I loved my little apartment overlooking the pond. Then BINGO lupus crash! The first stuff to go was my ability to work, and therefore my jobs. A lot of the time, I struggled to pay for my medical care and food. But when a little extra money came my way, I treated myself to something at the Dollar Store or half price day at the thrift stores. I sold many of my books on half.com as my passion for music, church music, and spirituality turned into a new course of learning how to live as a citizen in the land of the chronically ill.
Four years after the crash, I tentatively and timidly went off disability and back into the work force-that was January of 2007. For three years now, I have hung onto the “stuff” of that disability period. I have notebooks full of ways that I thought I would make a living when I couldn’t even stay awake for three hours in a row! In my closet I have a pysanky kit. Pysanky are Ukranian batik Easter eggs. A really good ostrich pysanky can bring $400. Then there is a notebook with the course of “how to become a medical biller and coder at home.” And let’s not forget the plethora of Christmas ornament instructions, including how to make “icicles” out of thin sheets of tin. Mind you, I could not even grasp a tea cup but I was going to use tin snips to make the icicles! The under-the-bed plastic boxes are full of fabric that I bought on sale with the expectation of saving money by sewing. I have carted some of it around for 7 years now! By the way, I never did make a $400 ostrich egg.
Sometimes we let go because we will suffocate if we don’t. Sometimes circumstances or disease make us let go as we are robbed of our ability and security. Other times, we recognize that it’s time to start a new chapter and we choose to let go. As my life takes me to places I never dreamed I would go, I find that it’s time to let go of stuff again. As I slowly sort through my “stuff” I am remembering periods in my life, treasuring them, and letting go so I can move forward once again.
There is a wonderful story about people in Africa who catch monkeys to eat them. (OK that’s gross, but get over it.) The people take a jar with a narrow neck and put fruit in the jar. The monkeys stick their hands in the jar but can’t pull them out while holding the fruit. They won’t let go of the fruit so they get caught and well, you know what happens next!
Thursday, January 14, 2010
The Power of Words
In February of 2003, after more than a week in the hospital, the doctors finally came up with a diagnosis for me: systemic lupus erythematosus. My rheumatologist stood at the side of my bed and said, "You have lupus. Do you know what that is?" I muttered something about it being autoimmune, making you tired, and having to stay out of the sun. "Good," he said, and left.
The hospital stay was 14 days. A month after my discharge,I went to see my rheumatologist for a follow up. I wanted to know if lupus was progressive, if I would be able to work again, if I would lose my independence, if I would die a slow lingering death by inches. He didn't give me any concrete answers. I was madder than a wet hen and did what I always do when I am frightened or angry, I go to work learning and looking for a solution. I lost both my jobs and ended up on disability.
In 2007, I went back to work and went off disability. Over those 4 years, my progress was excruciatingly slow but it was steady. I still see my rheumatologist every 3 months. At my last apointment, I thanked him for being so vague back in 2003. He left me to figure a lot out for myself. What I figured out was that this "disability" was going to be temporary. In my mind, it was just going to take longer to get back on my feet than it had all those times I got sick and was never diagnosed.
The words that others say to us and those we say to ourselves are extremely powerful. Words can precondition us for failure and surrender. Words can also light the way out of the darkness. What are people telling you? What are you telling yourself?
If you want to read an excellent book about this check out Counter Clockwise: Mindful Health and the Power of Possibility by Ellen J. Langer.
The hospital stay was 14 days. A month after my discharge,I went to see my rheumatologist for a follow up. I wanted to know if lupus was progressive, if I would be able to work again, if I would lose my independence, if I would die a slow lingering death by inches. He didn't give me any concrete answers. I was madder than a wet hen and did what I always do when I am frightened or angry, I go to work learning and looking for a solution. I lost both my jobs and ended up on disability.
In 2007, I went back to work and went off disability. Over those 4 years, my progress was excruciatingly slow but it was steady. I still see my rheumatologist every 3 months. At my last apointment, I thanked him for being so vague back in 2003. He left me to figure a lot out for myself. What I figured out was that this "disability" was going to be temporary. In my mind, it was just going to take longer to get back on my feet than it had all those times I got sick and was never diagnosed.
The words that others say to us and those we say to ourselves are extremely powerful. Words can precondition us for failure and surrender. Words can also light the way out of the darkness. What are people telling you? What are you telling yourself?
If you want to read an excellent book about this check out Counter Clockwise: Mindful Health and the Power of Possibility by Ellen J. Langer.
Thursday, January 7, 2010
Antibiotic "Ah Ha" Moment
My reading and research has shifted from the emotional side of chronic illness to the "why" of chronic illness. There are about 133,000,000 Americans with chronic medical conditions! Autism, allergies, ADHD, and asthma among children are increasing at alarming rates. Most of us intuitively feel that diet has something to do with all this. In fact, most newly diagnosed lupus patients who call the Lupus Foundation ask me if they can "go natural" and not take medication. My response is that it is not "natural" for your immune system to turn against you, and the cure is not simply natural either, take the medication. But I also encourage them to make lifestyle changes. Stress, toxins, lifestyle and diet all contribute to overall health. Those of us with chronic conditions have to be even more vigilant if we want to have the best level of health.
This brings me to antibiotics. Scientists tell us about super bugs that are antibiotic resistant. Antibiotics are frequently prescribed, not because the patient has a bacterial infection, but because the patient wants the doctor to give them something and the doctor complies. Sometimes antibiotics are life saving. No matter what, when we take antibiotics, the good bacteria that live in our gut are killed off along with the bad. We can replenish them by eating yogurt and drinking Kefir.
No one would take antibiotics on a daily basis for life. But wait! Most of us do! Farmed fish and animals are given antibiotics even if they are not sick. The farming conditions are so unsanitary that this is the only way to make sure the valuable "crop" doesn't get sick and die! If you eat meat, you are eating antibiotics. Antibiotics are in our eggs and milk. And if that's not enough, antibiotics are in our water! Check out the Environmental Working Group report on tap water http://www.ewg.org/tap-water/welcome.
When I tell people about antibiotics in drinking water their first reaction is that people may flush unused antibiotics down the toilet. Yes, that happens. But the antibiotics that we take and those that farm animals take are not fully metabolized. Some of the antibiotic passes as waste and enters the water table. They are not filtered out as the water trickles down. Many people say, "I drink bottled water, not a problem." Not true! Where do they think the bottled water comes from? In fact, tap water is checked and regulated, bottled water is not!
Why does it matter if we are consuming antibiotics in everything from our morning tea and omelette to that healthy salmon steak for dinner? We are destroying the healthy bacteria that live in our gut. 70% of our immune system is in our gut. We are making our immune system unbalanced which can result in allergies, autoimmunity (23.5 million Americans), and cancer.
What can we do? Clearly it is impossible to eliminate all the antibiotics that find their way into our bodies, but we can reduce the body burden. If you must eat animal products, choose those that are raised without antibiotics. More and more major markets are carrying these options. Add some organic yogurt to your diet and you have taken one big step to better health.
This brings me to antibiotics. Scientists tell us about super bugs that are antibiotic resistant. Antibiotics are frequently prescribed, not because the patient has a bacterial infection, but because the patient wants the doctor to give them something and the doctor complies. Sometimes antibiotics are life saving. No matter what, when we take antibiotics, the good bacteria that live in our gut are killed off along with the bad. We can replenish them by eating yogurt and drinking Kefir.
No one would take antibiotics on a daily basis for life. But wait! Most of us do! Farmed fish and animals are given antibiotics even if they are not sick. The farming conditions are so unsanitary that this is the only way to make sure the valuable "crop" doesn't get sick and die! If you eat meat, you are eating antibiotics. Antibiotics are in our eggs and milk. And if that's not enough, antibiotics are in our water! Check out the Environmental Working Group report on tap water http://www.ewg.org/tap-water/welcome.
When I tell people about antibiotics in drinking water their first reaction is that people may flush unused antibiotics down the toilet. Yes, that happens. But the antibiotics that we take and those that farm animals take are not fully metabolized. Some of the antibiotic passes as waste and enters the water table. They are not filtered out as the water trickles down. Many people say, "I drink bottled water, not a problem." Not true! Where do they think the bottled water comes from? In fact, tap water is checked and regulated, bottled water is not!
Why does it matter if we are consuming antibiotics in everything from our morning tea and omelette to that healthy salmon steak for dinner? We are destroying the healthy bacteria that live in our gut. 70% of our immune system is in our gut. We are making our immune system unbalanced which can result in allergies, autoimmunity (23.5 million Americans), and cancer.
What can we do? Clearly it is impossible to eliminate all the antibiotics that find their way into our bodies, but we can reduce the body burden. If you must eat animal products, choose those that are raised without antibiotics. More and more major markets are carrying these options. Add some organic yogurt to your diet and you have taken one big step to better health.
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