Baby Steps

“Alice: Would you tell me, please, which way I ought to go from here?
The Cheshire Cat: That depends a good deal on where you want to get to.
Alice: I don't much care where.
The Cheshire Cat: Then it doesn't much matter which way you go.
Alice: ...So long as I get somewhere.
The Cheshire Cat: Oh, you're sure to do that, if only you walk long enough.”
-Lewis Carroll, Alice in Wonderland

We want to get better. We want to go back to our pre-illness self and our pre-illness life. We want to go back to a time when our days were not filled with pills and doctors’ appointments, procedures and blood draws. Since we can’t go back, the only way to go is forward. But where are we going? We are going to do whatever we need to do to live the best life possible. We are going to be sick well.

Goals are great. Goals mean that we have hope. When chronic illness comes to visit, we have a choice. We can hold onto our old goals or we can make new goals. In 2003, the loftiest goal I could imagine was getting out of my pajamas every day or at least changing to clean pajamas by dinner time. I learned that to achieve the goal of getting out of my pajamas, I needed to take a series of small steps, resting after each one. Decide what to wear. Rest. Find the clothes. Rest. Take a shower. Taking a shower was huge. I had to rest for at least an hour. Get dressed. Rest. Be proud of myself. I did it! The first step is always getting started. Every small triumph inspires us to go on.

What new goals do you have now that you have chronic illness? Pick one goal that is achievable. Make it a small goal. Make a list of all the steps you must take to get to the goal. Go back over the list and break each step into smaller steps. Work on just that one goal, one tiny step at a time. Setbacks are not failures. If you have a setback ask yourself what you learned. Then carry on. Give yourself permission to keep on trying. Life with chronic illness is about progress, not perfection.

From Life Recycled: Creating a New Normal in the Face of Chronic Illness Release date April 1, 2018.

Medicare Nation

When you are sick, the last thing you want to do is try to figure out your benefits. If you are a caregiver for someone who is older or sick, you may find yourself with the added burden of helping your loved one negotiate the system.

Diane Daniels podcasts about Medicare. Diane helps those on Medicare (the retired and disabled) and those who care for them understand and maximize their benefits. Choosing a Medicare plan provider is confusing in itself. Once you have a plan, understanding and getting your benefits offers new challenges.

I recently had the honor of being interviewed on Diane's podcast Medicare Nation. In recognition of World Lupus Day May 10, Diane included lupus in our interview. Click here to listen to the podcast.

Spoiled Identity

Baycare Presentation 5.19.15 Part 2

While presenting at a break out session for a recent Baycare employee in service day, I asked for a volunteer.

“I am going to ask you a question,” I said. “It’s an easy question. The hard part is that I am going to ask you the same question twenty times. You have to give a different answer each time. Are you up for it? Here is the question. Who are you?”

The volunteer nodded her consent. The questioning began. After each repetition she gave a different answer. “I am Denise, a wife, a mother, a nurse, a daughter, a friend.” Then she was stumped. I prompted her, asking if she played sports or had a hobby. Still, nothing! I thanked her and let her out of the hot seat.

We identify ourselves by what we do and by who we are in relation to others. Chronic illness spoils that identity. We can’t do the things we used to do, things that were a significant part of our identity. We lose jobs, have to work less, can’t keep the house as clean as we would like, and have to give up activities we enjoy. We can’t be who we were in relationship to others. Parts of those relationships remain, but other parts slip away. We have a hard time fulfilling our domestic roles, playing with the kids or grandkids or engaging in activities with a loved one. Our image of ourselves as healthy doers is eroded piece by piece. Our identity is spoiled.

I paused to ask the participants, care coordinators for the Baycare system, if the patients they encounter are ever angry. Everyone in the room nodded yes. These patients are angry because they are grieving for who they used to be. Just like we grieve for someone who has died, we grieve for our spoiled identity and for our hopes and dreams for the future. Who wouldn’t be angry? Anger is one of the stages of grief. Yet no one is there to help us recognize that we are indeed grieving or to help us through the process.

Once patients with chronic illness become aware that they are grieving, they can enter into the process. The process is messy and challenging. But there is healing and hope on the other side. We can spend the rest of our lives in anger and depression or we can move forward to create a new identity.

"The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one [or yourself]; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again, but you will never be the same. Nor should you want to be the same. Nor would you want to be". Elizabeth Kubler-Ross and John Kessler.

What is your illness model?

Baycare Presentation 5.19.15
Part I

Health professionals know about acute and chronic models of illness. Many patients do not. A broken bone, ruptured appendix, and strep throat are examples of acute illness. The onset is usually swift and clear; a bone is sticking out of your arm, you are in excruciating abdominal pain or you can barely swallow, have a fever, and white patches in your throat. Acute illnesses are easy to diagnose. There is little doubt about treatment. A cure is common. In fact, most people get better and go back to living normal lives. This is the model of illness for most patients.

For a third of Americans, that model just doesn't work. We are the people with chronic illnesses. At the beginning, symptoms come and go. We might even doubt whether we had symptoms in the first place or if the symptoms were all in our head. Just like your tooth stops hurting when you go to the dentist or your car stops making that noise when you get to the mechanic, symptoms of chronic illness may disappear by the time you see the doctor. As symptoms increase in frequency and severity, we begin the diagnostic journey. Not only do many chronic illnesses lack clear diagnostic tests, each illness brings a few illness buddies along to confound the diagnostic process even more. Finally, we are relieved to find out that what we have has a name. Now we can get better! Not so. Treatment for chronic illnesses and the illnesses that come along in overlap is anything but clear. Trial and error may be the norm until the doctor finds just the right combination of treatments. Now we can get better! Not so. Cures for chronic illnesses are rare. So why bother with treatment? Patients and providers, alike, need to remember that in the absence of a cure, the goals of treatment are to reduce and relieve symptoms, slow the progress of disease, and prevent permanent damage.

If patients hold onto the acute illness model is it any wonder that they are angry because they do not get better? Is it any wonder that patients who receive treatment but don’t get restored to full health are frustrated? Is it any wonder that, without hope of a cure, patients become non-compliant?

Weak and Lazy

"My family doesn't believe I'm sick. They tell me I'm just weak and lazy. They think I do this to get attention. I wish someone would understand." A young woman posted this on Facebook today. Hundreds of people with chronic illnesses, especially women, post a variation on this them every day. If we are really honest with ourselves. we probably had similar thoughts until we moved from the land of the healthy to the land of the sick. Maybe we shouldn't judge the healthy folks so harshly!

Healthy folks need to have a reason for our condition. They need a reason so they can reassure themselves that what happened to us will not happen to them. One of the ways they do this is denial. In this case, denial says, "There is nothing wrong with her. She has a character flaw. She's using this as an excuse to slack off and not carry her weight in this family or society. Even if she does have something, her character is too weak for her to fight it. She should just suck it up, put on her big girl panties and soldier on."

We can't control what they think or say. What we can choose our reaction. Animals act on instinct. Humans get to choose. Why waste precious energy explaining until we are blue in the face when it won't change a thing? Everyone ends up exhausted and irritable. Nothing changes. We can choose to use our precious energy in self-care instead.

Warriors and Survivors

People call themselves lupus warriors. How can you engage in a battle without weapons, training and skill? You can’t! Fighting a war takes energy, strength and clear thinking. Lupus robs us of these things before fight even begins.
People call themselves lupus survivors. When you survive something, it is in the past. You made it through something horrible. You may have scars, but the event is over. Lupus is never over.
Hating lupus won’t chase it away. You might as well expect the color of your eyes or the shape of your nose to change by hating it.
When lupus takes up residence there is no eviction. Co-existence is the only option. Fighting takes energy. Direct the energy toward working for health instead of fighting against lupus. Co-existence is the key to success.

Mortality

Last Tuesday, I spoke to a cancer support group. It was difficult for me to do. I spent a great deal of time preparing. Talking about our own mortality is difficult. Those of us who can do that have learned to truly embrace the present moment and all the good things life has to offer.

As I looked around the room, my mind went back to a dinner about a year ago. The dinner guests included lupus researcher, a top rheumatologist, and potential donors. During the meal they naturally talked about lupus. When it came to mortality from lupus, I spoke up saying, "It's really hard for those of us with lupus to hear you talk about mortality statistics." And it was. And it is.

One of my fellow teachers has a husband with severe lupus. On Wednesday of this past week, he died from complications of lupus, leaving behind a wife and two young children. Camilo Molina, rest in peace and my light perpetual shine upon you.

Lupus Isolates

Lupus isolates people. Chronic illness isolates people. After the diagnosis, you are forever changed. You realize very quickly that the people who live in the land of the healthy have no idea what it is like to live in the land of the chronically ill. We have learned a new language and culture that they cannot understand unless they come to this land.

I gave a Lupus 101 presentation today. I watched the faces of the newly diagnosed as they learned about what lupus can do to a person. I watched the faces of the lupus veterans, nodding their heads. The presentation was heavy on the science. The questions afterwards were on social and emotional. I let the veterans answer.

One thing that every newly diagnosed person mentioned was that they had felt alone and isolated. They have no one in their lives who understands what it is like to have lupus. For the first time, they were in a room full of people who do understand. That's what support groups are about. We do not have to go it alone!

I Never Told You

You came to help me. But I never told you what I needed. I just sat there feeling miserable. I felt sad for your helplessness, too. As you busied yourself tidying things up, cleaning and rearranging my kitchen because that was all you could think to do, I sat silently. What I really needed, what I really yearned for was to put my head in your lap and have you gently stroke my forehead the way my mother used to do. I never told you what I needed. I never got it. You never got the gift of giving it.

Are Your Ears Connected to Your Mouth?

The busy-ness of life is stressful for most people. For those of us with chronic illnesses it is downright overwhelming. I have a very challenging 10 days staring me in the face. We are moving the lupus foundation office. Ash Wednesday is next week which means additional preparation for church and for school. One of the high ranking Salesians is visiting the parish. I have two youth Masses and substituting at another parish in the evening. And this weekend I have 4 performances of Alice in Wonderland with my students and there is still work to be done on the sets. There are other things, but this list is more than enough.

Reflecting on this past week, I observed myself listing these activities when I was speaking to people. The more I heard myself articulating the list, the more agitated I became. I am not sure where this script came from. Perhaps, I am trying to validate how hard I will be working by telling other people. Perhaps, I am making some kind of check list.Perhaps I am trying to impose order on the week. Whatever the motivation, the result is the same. I am borrowing stress from the future.

What we tell ourselves and what we tell others can bring us peace or turmoil. Working with lupus patients and people with chronic illnesses, I often hear well-rehearsed litanies of complaints. I used to recite my own litany, especially to friends and family. My hands hurt. I am so tired. The drugs weaken my immune system. My feet are so stiff in the morning I can hardly walk. And on and on...Perhaps I was trying to validate my suffering. Perhaps I thought that saying it out loud would make my suffering real to other people. Whatever the motivation, concentrating on the list caused stress which in turn, made me feel worse.

One night, after playing for Shabbat services at a local Reformed Jewish congregation, an elderly lady who was upset by the sermon went to the rabbi and saidd, "So, Rabbi, are your ears connected to your mouth?" Do we really listen to what we are saying? How is what we are saying impacting our health and our life? Are YOUR ears connected to YOUR mouth? Take a day to be a witness to what you say.

A Goof Off Day

Yesterday was a goof off day. I wasn't sick or anything. I was just feeling a little rebellious from two weeks of very hard work and a hard weekend ahead. I hung out in my caftan, drank tea, ate Christmas candy and played video games on my Nook. A few times, I had a case of the 'shoulds' as in, "I should be getting that music in order. I should be cleaning the bathroom. I should be making Christmas fudge." But I chilled instead.

My lupus was undiagnosed for 38 years. Every year as Christmas approached, I was tired, but pushed and then pushed a little bit more. Christmas had to be perfect. Gifts needed to be made and purchased. Baking traditions had to be upheld. Like clockwork, every year in the middle of playing midnight Mass, I would feel the beginnings of a cold-sore throat, swollen glands, fever. I soldiered through Christmas Day and crashed that night. I stayed sick until after Easter each year.

My diagnosis in 2003 was pretty dramatic. Multiple organ systems were affected. For 4 years, I had no choice but to rest when the holidays came. The lupus has gradually come under control. Along the way, I learned that no matter what you do, Christmas will come. Just being with family and friends is all that really matters. I learned to examine my priorities. And I learned that when my body calls for a goof off day, I need to listen!

Not Alone Anymore

Chronic illness is isolating. Susan Sontag, in her book Illness as Metaphor, talks about how those of us with chronic illness have been given a passport from the land of the healthy to the land of the sick. We find ourselves in a culture that we don't understand. When we are among the healthy we feel like foreigners. When we find another person with our condition or illness, there is an instant connection. We are not alone anymore.

Last fall, I was on retreat with 19 high school girls. Before the retreat, I knew that one young lady had Type I diabetes and some other autoimmune issues as well. Before we all went to sleep, another girl found a test kit and brought it to the one with diabetes asking, "Is this yours?" The girl with diabetes opened it, looked puzzled and said, "No, this is not mine. There is another diabetic here!" She looked around with eager anticipation. They connected quickly. Then when it was time for them to test, they happily sat together on the same cot to test their blood sugar. They were not alone anymore.

A few weeks ago, I met a parent of one of my students. I noticed immediately that she had rheumatoid arthritis, but did not glance at her hands again. At one point in the conversation, I mentioned that I have lupus. She knew. I am pretty public about my lupus so most of the people with whom I come in contact are aware. She said that she had RA. I told her that I noticed. In March, I am going to France with a group of high school students and parents. This parent is one of them. I ran into her tonight after opening night of Grease and we talked about the trip. The stress of international travel can be an issue for those of us with autoimmune disease. She said, "I am going to bring some prednisone just in case." I said, "Good idea, I will do the same." In that brief exchange about prednisone, we were not alone any more.

When people come to our lupus support group for the first time they often cry. The first tears are always about the difficulty of admitting that you have this disease. Tears near the end of the meeting are usually about deep relief in realizing that the new person is not alone anymore.

If you have a chronic illness, you may feel alone and isolated. You don't have to be alone. Most disease foundations have support groups. If you can't find one near you, there are countless on line groups. You don't have to be alone. You can reach out and connect to people in person and online and then look around and say, "There is someone like me here. I am not alone anymore!"

Thanks for the Memories

We all have memories, good and bad. But did you know that good memories can be used for good or bad? Let me explain. I hear patients complain all the time that they can't do what they used to be able to do and that's true. If remembering what we used to be able to do makes us feel angry, depressed, frustrated, or helpless then those memories are being used for bad. What we think causes what we feel. What we feel affects our health. There are two ways to change this negative reaction to our good memories.

The first is to recognize that no one stays the same. No one! As people age normally they are not always able to do the things they did when they were younger. It's the same for those of us with chronic illness, only our losses occur sooner and may be more dramatic. But the point is, if you are alive, you are going to experience changes in ability and energy. Welcome to the human race!

The second is to use those memories for good. Here is a personal example. This morning was the first break in the summer heat for Tampa. I went out to walk at 7 AM. It felt like a late June day on Long Island. As I walked along the water's edge and heard the waves gently lapping against the sea wall, I thought of how I spent endless teen age summers on my little orange and black boat that I named Gazorpf. Half way through the walk, I stopped to watch the sun coming up, listen to the water, smell the salt air, and feel the soft breeze. I was transported to those carefree teen days on the water.

I could have thought differently. I could have thought: I'll never be able to do that again. I can't even be in the sun very long. I don't have a boat. I was healthy then. I wish I wasn't old [OK I am 59 and that's not old!]. I wish I didn't have lupus. This is not fair. My life will never be the same."

Instead, in my mind I went back to those carefree days. I let myself feel the delirious freedom of being out on the water without a care in the world. I came home happy, recharged and ready to start my day.

When you think about good memories, what is your reaction? Are you mad, sad, or frustrated because you can't have those experiences now or do you look back at those memories as treasures that can bring you great joy even now? Can you choose your reaction? You bet you can! The difference between people and animals is that we get to choose our reaction.

Is there a song, a place, a picture, a smell or a taste that brings back good memories for you? Can you indulge yourself in opening that treasure chest and delighting in the memories that you have stored there? How lucky you are to have those good memories...me too!

Lupus Fog

Lupus fog is real. As I took my morning walk today, a thick fog gradually rolled in across the bay. In a matter of 15 minutes, familiar landmarks vanished. The island across the bay was gone. I knew they these things were still there, but try as I might, I just couldn’t see them. As I drew near, things gradually emerged from the fog. I thought to myself, “That’s how it is with lupus fog.” Your phone number might be hidden in the brain fog at one moment, and as you move through the day, your phone number may reappear, but how to do a simple task becomes engulfed.

Perhaps the hardest part of a lupus fog episode is, that although you have forgotten something important, you still realize that you used to know it. You worry that these lupus cognition problems will never go away and you are terrified that lupus memory problems will get bad enough that you will no longer be able to care for yourself.

At 52, about a year after I was diagnosed, I found that I could not remember how to drive home from places. I would pull the car over and try very hard to remember. Then I would cry for a while. Afraid to call someone for fear that I would lose my independence, I would start driving in one direction and hope to see a landmark that would trigger my memory. I could usually figure out when I drove too far and then would head off in the other direction. Sooner or later I would find my way home. At my next appointment, I told my doctor that I was having memory and cognition problems. I never told him just how bad the lupus fog was. He didn’t seem overly concerned, probably because I wasn’t overly truthful! He chalked it up to age. My family felt the same way. I began to doubt myself which made the fog even worse!

My lupus memory problems could have had a systemic origin. My lupus fog could have been caused by the generalized anxiety that comes along with living with chronic illness. Depression certainly plays a part in forgetfulness. I suspect that the disease, anxiety and depression all played a part. As the lupus improved, the fog lifted. Seven years later, my memory is better than it has ever been.

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.

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.

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!

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/

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?

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.