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.

Wrestling with Thoughts

Psalm 13
How long, O Lord? Will you forget me forever? How long will you hide your face from me? How long must I wrestle with my thoughts and every day have sorrow in my heart?

Whether or not we are aware of it, we spend a lot of time wrestling with our thoughts. If we have chronic illness that wrestling sounds something like this:

I hurt. I am tired. What if this is as good as it gets? What if I become disabled or more disabled than I am? What if I can’t take care of myself? Will I lose my mind? What if my family puts me in a nursing home? How will I survive? And on and on…

We are so busy with our thoughts, that we would do not notice God with us all the time. Observe your thoughts. Pay attention to what you are telling yourself day in and day out. Sit in silence and notice the things you think. Sit down with a piece of paper and write down every thought that comes to your mind without censoring anything. What did you discover?

Awareness is the beginning of change. Carry this awareness of your thoughts with you through the day. Choose more positive, helpful thoughts to replace the negative ones. Instead of “I can’t do anything anymore” you might say “I can love” or “I have the time to really listen to others.” Make up your own new thoughts. One of the wonderful things about being human is that we get to choose what we think!

As the negative self talk subsides, you will find that God has been there all along.

Healing through the Psalms 1

Psalm 1

Blessed is the man who does not walk in the counsel of the wicked

Or stand in the way of sinners or sit in the seat of mockers,

But his delight is in the law of the Lord,

And on his law he meditates day and night.

He is like a tree planted by streams of water,

Which yields its fruit in due season and whose leaf does not wither.

Whatever he does prospers.

Not so the wicked.

They are like chaff that the wind blows away.

Therefore the wicked will not stand in the judgment,

Nor sinners in the assembly of the righteous.

For the Lord watches over the righteous,

But the way of the wicked shall perish. (NIV)

When the psalmist refers to the wicked as chaff blown away in the wind, we judge ourselves as wicked. Illness has blown away our identity, hopes, and dreams and, in fact, our very selves. Surely we brought about our condition because we were not good enough, we made poor choices or we failed to do the good we should. Guilt and blame add insult to injury for the person who has chronic illness. We long to be like the tree planted by streams of water. We want to bear fruit, to be productive. Instead, we wither.


People who are healthy need to reassure themselves that they are the righteous ones and are therefore safe from our plight. They are more afraid than judging. Yet, we feel judged and we judge ourselves. We want to know why and find an easy answer in judgment.


God does not send illness to people. Illness happens. All creation is striving for perfection, but has not yet arrived. No one is perfect. No one is truly righteous. We all fall short every single day. Think about it. If God makes bad people sick, how then, are brutal and murderous dictators living healthy lives?

You are not bad. God is not punishing you. In the desert void created by your illness, God will indeed bring streams of living water. The only thing in the way is the dam that you build out of blame and guilt. Let go of the judgment. Let go of the blame. Let the river flow. You still have much fruit to bear.

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.

I Know Someone

She sat next to me in the waiting room at the doctor’s office. It was my first visit since I was diagnosed in the hospital. I was still numb with shock. She said, “I had a friend who had your disease. Her organs shut down one by one. It was such a horrible death. “ I changed the subject. She recounted more grizzly details. I said nothing. I pictured myself stuffing a sock in her mouth.

Why do people say such things? Why didn’t I ask her to stop immediately? How can I handle this differently the next time?

Giving Up (studies in learned helplessness)

I am rereading Ellen J. Langer's wonderful book, Counterclockwise: Mindful Health and the P0wer of Possibility. In one chapter, she writes about studies in learned helplessness.

Researchers took dogs and put them in harnesses. The control group was simply harnessed and later released. The other two groups were harnessed and subjected to electric shocks. One of those groups could stop the shocks by stepping on a lever, the other group had no control. After the experiment, the group that had control recovered quickly, while the other group exhibited symptoms similar to chronic clinical depression.

Those same groups of dogs were put into a shuttle box apparatus where they could escape the shocks if they jumped over a small partition. For the most part, the last group of dogs who had previously "learned" that they had no control over their fate, just lay down and passively whined. They didn't even try to escape the shocks.

Another study involved rats. Rats were restrained until they gave up struggling and went limp. Those rats and a control group that had not been restrained were put in ice water. The restrained rats didn't even try to swim. The rats that had not been restrained, swam for hours.

I felt that way in October of 2003. I had learned helplessness. It was actually a spark of anger at a psychiatrist that drove me to the library to learn how to live well with chronic illness. (Truth be told, it was less of a spark and more of an explosion!)

Langer goes on to write, "Why try to help ourselves if we have a disease that's uncontrollable? There wouldn't be much point. Remember, virtually every disease medicine has conqured was at one time thought to be uncontrollable, and again, it took someone to think it indeterminate to find out how to conquer it."

Three P's of LuPus

My journey with lupus has taken me from food stamps, near homelessness and disability back to a happy and productive life. It took nine years! For eight of those nine years I have been involved with the Lupus Foundation of Florida, first as a volunteer group leader later adding the role of newsletter editor and facilitator coordinator. After four years on disability, I decided to try to return to work. I accepted a part time position at the Lupus Foundation of Florida and a post as director of music ministries at a small, low stress Catholic church.

Over those years, I have made many lupus friends and I have shared their journeys. Some people can't get past the feeling of being a victim. But for others, something clicks and they take all the anger and frustration and decide to fight like a banshee. My "ah ha" moment came after a visit to a mental health professional who was absolutely clueless. Recently, in a Facebook post, a friend who was diagnosed about two years ago made this post in our support group page. I asked permission to use it.

"Today was the battle of lupus versus ME and I won. I went for my 6th infusion and my blood count is UP...Next week, I am going for the improtant test and another infusion. I KNOW the important test for ferritin will be FABULOUS. When I started 8 weeks ago my ferritin was 25 (normal is 150+) and after three treatments it went to 47. Now, I know it will be 100 next time and then watch out, California here I come, ready or not. I won't let this damn disease control my life; I am in control. Eveyone of you with lupus, fight this disease with all you have and you will win! It takes perserverance, persistance and being pissed off (instead of feeling sorry for yourself). Those are my three P's. I don't usually swear but I will be damned if this disease will interfere with my future plans! I didn't work hard all my life to give in to Lupus when I have so much to do in my "rusty" years. Live, Love, Laugh, and Fight! Love you all."

Thank you L.K.!

Resilience

I am sitting here tonight, reflecting on the week that just passed. As the week approached last Friday, I knew that I had huge challenges and a huge amount of work. Last Sunday, I had a 15 hour non-stop work day to kick things off. This past week was Ash Wednesday (church and school obligations), the spring musical at school meaning that we were in "hell week" for rehearsals, the visit of a top ranking Salesian to our parish and attendant functions, and the moving of the office of the Lupus Foundation of Florida. I thought, "That's more than enough for a 60 year old woman with lupus."

But that was not enough. A week ago Friday, I received a message that my estranged father was in Hospice care and would be happy to see me. That night, I went on to paint sets at school, but took time to go to the chapel to cry and pray. The next morning, my oldest son (age 36) went with me to Hospice. I had no idea what would happen, but I was determined to do the right thing. While there, I found out that my father died about an hour before I arrived. The week was spent trying to figure out who was going to arrange his service (when you are estranged these things are complicated) and being attacked for stepping up. I had to remind myself that I cannot control what other people do or say, but I CAN control my reaction. It was hard not to let old rusty buttons be pushed. But I held firm.

Tonight, the whole insane week is behind me. I am still standing. I am still healthy. Resilience is an amazing quality. I learned resilience by going through many hells. Each time I came out on the other side, I had a new understanding of my ability to make it through trials and create a new life. I never thought of it as resilience until I read this pamphlet from the American Psychological Association, "The Road to Resilience."

And so, in quiet solitude, I rejoice in my resilience. My prayer is that you can reach deep down inside and find your resilience too.

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.

Writing Yourself Well

Feelings buried alive never die. Everyone has difficult emotions from time to time. Most of us have gotten pretty good at burying them. If you are living with a chronic illness, you have more than your share of unpleasant feelings. The only way to get past these emotions is to express them. But the feelings are so terrifying that we dare not take the lid off the pressure cooker. We are afraid that if we express even the smallest part of these feelings, we will explode and our arms and legs and head will fly off into space. Keeping feelings buried takes all of our energy, energy that would be better used to heal.

I don't know about you, but no one ever taught me constructive ways to express painful feelings. Last year, I took a Mindfulness Based Stress Reduction workshop and a relationships workshop from a wonderful local psychologist, Beth Meeker. Beth uses a combination of meditation, journaling and small group sharing. Her workshops are typically 5 hours long! Beth recommended The Artists Way: A Spiritual Path to Creativity. There are short, thought provoking chapters, followed by tasks for that week. Some of those tasks are journaling prompts. One of the things the author, Julia Cameron, recommends is what she calls "Morning Pages." She encourages the reader to write three pages in a journal first thing every morning.

Since writing my "Morning Pages" nearly every day since August 2011, I have finally been able to express some tough emotions and let them go. It's no coincidence that my health has continued to improve. I hope and pray that some of you will give journaling a chance. Let me know if you do and please share your experience.

Fear of Failure, Fear of Success

When we are sick, the easiest thing to do is to stay stuck. We're sick. There is no cure. We can't do what we used to do. We aren't the people we used to be. We think that gives us the right or even the obligation to just settle for the status quo. Some of us verbalize our plight to others. We give regular updates on what body part is giving is trouble today. Some of us are silent, but our body language and expressions speak volumes.

I read an interesting quote this morning in The Artist's Way: A Spiritual Path to Creativity. We don't start things because of laziness or procrastination, but because of fear of failure or fear of success. I think it's the same for those of us who get stuck with our chronic illnesses. We often don't try to improve our health because we are afraid whatever we do will not work. We don't try to improve our health because if we are successful, we have to let part of our sick person identity go.

Despite the fact that there is no cure available to us, there are small things we can do that can improve our health. We need to muster the courage to try. The tool that musters the courage is love.

What one small thing can you do each day for yourself?

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!

Window Witches

I love my rheumatologist. Not only did he save my life, he is a really good and kind person. Unfortunately, at least from my perspective, his staff hiring skills sometimes leave something to be desired. Enter the Window Witch, or as my friend Doc Rob calls them Helen Wait (as in "go to hell and wait").

I forget when, but it was early spring or late winter when I had an appointment with my rheumatologist. In typical lupus fog mode, I got my appointment confused with King Julian Grayson aka CAT's appointment with the vet. We both missed our appointments. The vet was willing to see King Julian the next day. You see, both of us have urinary tract issues. I have lupus nephritis and he makes crystals in his urine unless he is on prescription food. I called my rheumatologist and Helen Wait said, "Sorry, no appointments for 6 weeks." I explained what happened, that I have lupus nephritis and that the doctor would not be happy if it took that long. The response was, "We have no appointments for six weeks." I asked if she could ask him to fit me in. All it takes these days is 5 minutes. "We have no appointments for six weeks." No empathy. No cooperation.

So I decided to have the labs drawn and then call my doc on his cell after I had that done. Then life got crazy busy which was great. Fiinally, I found the scrip for the labs. By now it was August. I called Helen Wait the Window Witch again. "No appointments for six weeks." Grrrrr. I thought, "He really needs to know about how his staff do not take into account the needs of patients or his requirements of his patients. I left a message on his cell the first week in September, but he did not call back. I understand that. He has two little babies and it's easy to miss something. We had a huge lupus seminar on September 10, so once again I was preoccupied.

By now, I really needed another set of labs drawn. On September 29, I called again. "No appointments for six weeks!" So I made the appointment. It is tomorrow. I asked her to send me a prescription. Her answer, "Have your pharmacy call the office." WHAT? I said calmly, "Walgreens does not draw blood or test urine." She said, "Did you call them?" HUH? I spoke very slowly," I...need...to...have... blood... drawn...and...my...urine...tested. I...need...you...to...send...me... a prescription." She got it.

A few days later the prescription came in the mail. I didn't open the envelope until I was on the way to have labs done. I looked at the scrip, clearly written by a young woman (thanks be to God, I don't have that funky young woman writing but anyway) and it was wrong! Obviously, she copied it off a prescription about 3 years ago. It called for a CBC but not a differential. With lupus, the size and shape of the blood cells are as important as the complete blood count (CBC). The prescription called for a 24 hour urine collection which we have not done for years. On top of that, even if I did a 24 hour collection, it should have called for creatine clearance and it did not. I called and asked for the correct prescription to be faxed. I clearly explained why this prescription for labs was pretty useless. She said the fax went.

Fast forward 6 hours. The lab never got the fax! I asked the clerk at the lab to call the doctor's office. By now, I would not have been even remotely polite. She called. The first person said she never heard of me and that they did not send a fax! I instructed the clerk to ask for Cathy, who confirmed that she sent a fax. The clerk asked her to fax again.

So now, I see the rheumy tomorrow at 4. He will be upset that it took so long for me to get in. He will say that if I called his cell he would have seen me. And he would because he cares. But what about all the patients who do not have his cell? I have decided that this is a teachable moment. I am also not looking forward to it. However, we all get chances to change the world in small ways.

Fitness to Fight Chronic Disease

Welcome guest blogger Melanie Bowen, an awareness advocate for natural health and holistic therapies for cancer patients. You will often find her highlighting the great benefits of different nutritional, emotional, and physical treatments on those with illness in her efforts to increase attentiveness and responsiveness on like topics.

With an aging population in the US and across the world, many countries are seeing a rise in both chronic and terminal health conditions. These can be due to many circumstances such as old age susceptibility, obesity, hypertension, and cancer such as mesothelioma. While researchers and pharmaceutical companies scramble to find new medications for secondary and tertiary treatment of these diseases, many people are realizing that a simple change of diet and daily exercise may create a positive change in their condition, mindset, and health related outcomes. Although diet and exercise may not be a cure-all or a cure at all for most chronic and terminal disease states, they can significantly improve one’s emotional and even physical health along with life expectancy.

Hypertension
One of the most common chronic conditions of people from the ages of 35 and older is hypertension. Hypertension is caused by a number of conditions that include cardiac disease, the build-up of cholesterol levels in the body, and perpetual states of stress. A change in diet and exercise is the first line of prevention for this condition. Exercise may temporarily increase one’s blood pressure initially, but as weight is lost and the heart learns to pump more efficiently, one can see a reduction in as much as ten millimeters in his or her blood pressure, which can definitely increase one’s life expectancy.

Mesothelioma and Other Cancers
Because many people were exposed to asbestos in shipyards and manufacturing industries, there was a significant increase in mesothelioma in the baby boom populations. Treatments for mesothelioma and cancer in general can be very taxing on the body leaving the patient drained and lethargic. However, times when the patient is not receiving chemotherapy can be spent doing light levels of exercise to increase the body’s ability to recover during rounds of therapy. Although this may not be scientifically shown to increase life expectancy, one who can endure chemotherapy with little effects possible may be able to receive more chemotherapy, which could allow for cancer remission.

Exercising at Home
Many people may not have the opportunity, time, or money to visit a gym each day. However, there are many exercises that one can complete at home. Light exercises such as walking can be done around one’s neighborhood and even standing in place inside the house. Jumping jacks are another way to get the cardiac pump working and lose weight as well. Television has a number of workout routines available around the clock, which range from light exercise to heart pounding workouts. Anyone wanting to start a workout routine should consult his or her doctor to ensure they are healthy enough to sustain certain activities. It is best to begin with and progress on a monthly basis.

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!