Wednesday, November 21, 2012

Begin with the End in Mind

Begin with the end in mind. I have been revisiting a number of books that made a deep impact on my life. Right now I am working through Seven Habits of Highly Effective People by Stephen R. Covey. I was caught off guard by an exercise at the beginning of Habit 2: Begin with the End in Mind. Although I could paraphrase the exercise, I am going to quote the whole thing here. I am making a personal commitment to take my journal (one of those black and white hard cover school notebooks) to a quiet place and work through this. Here goes...

"Please find a place to read these next few pages where you can be alone and uninterrupted. Clear your mind of everything except what you will read and what I will invite you to do. Don't worry about your schedule, your business, your family, or your friends. Just focus with me and really open your mind.

In your mind's eye, see yourself going to the funeral of a loved one. Picture yourself driving to the funeral parlor or chapel, parking the car, and getting out. As you walk inside the building you notice the flowers, the soft organ music. You see the faces of friends and family you pass along the way. You feel the shared sorrow of losing, the joy of having known, that radiates from the hearts of the people there.

As you walk down to the front of the room and look inside the casket, you suddenly come face to face with yourself. This is your funeral, three years from today. All these pepole have come to honor you, to express feelings of love and appreciation for your life.

As you take a seat and wait for the service to begin, you look at the program in your hand. There are four speakers. The first is from your family, immediate and extended-children, brothers, sisters, nephews, nieces, aunts, uncles, cousins and grandparents who have come from all over the country to attend. The second speaker is one of your friends, someone who can give a sense of what you were as a person. The third speaker is from your work or profession. And the fourth is from your church or some community organization where you've been involved in service.

Now think deeply. What would you like each of these speakers to say about you and your life? What kind of husband, wife, father, or mother would you like their words to reflect? What kind of son or daughter or cousin? What kind of friend? What kind of working associate?

What character would you like them to have seen in your? What contributions, what achievements would you want them to remember? Look carefully at the people around you. What difference would you like to have made in their lives?"

Am I looking forward to this exercise? Of course not! Will I do it? Yes!

Monday, November 5, 2012


Money. Time. Food. The first two seem to slip away and we don't know where they have gone. The third seems to slip in unnoticed and end up on our tummies, hips and thighs. When I was in a class for new home buyers, we had to keep a journal of every penny we spent. The very act of having to write it down made me think twice about every purchase.

When I am on Weight Watchers, I have a little calculator that tracks the point value of everything I eat. If I have to enter 13 points for a single serving frozen pizza when I only have 29 points for the day, I will seriously think about whether it is worth the points.

Those of you who know me, also know that I work a lot. I also do a lot of my work from home. I recently started tracking how I use my time. I made a little spread sheet in Excel with 15 minute increments. After a week of time tracking, I was amazed at how much I do and also about how I "zone out" for periods of time where I honestly don't remember what I was doing!

Tracking things like spending, eating, and time use makes us aware of what is really going on in our lives. Tracking raises awareness. Awareness is the beginning of change. Once we take a look at what we really are doing, we can decide what we want to change in our lives.

Saturday, November 3, 2012

For the most part, I am vegetarian. Although every now and then bacon gets me to fall off the wagon! I also love my slow cooker. I turn it on in the morning and come home to dinner. But all my recipes hinged on meat. Browsing the cookbooks in my public library, I discoverd several slow cooker books for vegetarians and vegans.

I made this very yummy recipe from The Vegan Slow Cooker by Kathy Hester:

Tempeh Braised with Figs and Port Wine
2 tablespoons (30 ml) olive oil
1 small onion, minced
2 cloves garlic, minced
1 package (8 ounces or 25 g) tempeh* cubed
8 fresh figs (may substitute dried figs)
1/2 cup water
1 tablespoon (15 ml) balsamic vinegar
1 tablespoon (6 g) vegan chicken flavored bouillon
1 sprig fresh rosemary
1 sprig fresh thyme
Salt and pepper to taste

Heat the oil in a skillet over medium heat and saute the onion until translucent, 3 to 5 minutes. Add the garlic and saute one minute longer. Combine all ingredients in the slow cooker. Cook on low for 6 to 8 hours.

Yield 4 servings.

*Tempeh is a soy product and a good source of protein. In this recipe, it totally absorbs the all the flavors. The texture is more "toothsome" than tofu. I am not overly fond of tofu, but I love tempeh. You can find it in the refrigerated section with other meat substitutes at health food stores or in the organic part of the produce section of some grocery stores like Publix.

Happy eating!

Monday, September 10, 2012

I Choose

This is the newest post to the pantry door which is becoming "Life Central" for me.

What SHOULD you do? What do you HAVE to do?

What do you choose to do? What is your choice right this minute?

Saturday, September 8, 2012


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.

Tuesday, September 4, 2012

My Insurance Company: The Pill Police

I thought I was over it. I thought I was over dealing with gross stupidity and annoyance when it comes to my medical care. I was wrong!

I went on line today to order a refill for my Cellcept, the wonder drug that suppresses my immune system and allows me to keep my kidneys. I entered all the information and clicked "check out" and then...I got a message that the order could not be processed and that I needed to call customer service. Sigh. I tried again on line and then surrendered and called.

When I calmly and sweetly (yes I really did that) mentioned that the new website would not let me order on line and that perhaps, in the interest of customer service, they might want to check out the website issue the order taker MADE UP a stupid answer. "Well, Ma'am some medication, well you have to call you know. I don't know why, but it happens." I took a deep breath and said, "I have been doing this on line for years. And you are guessing that it all of a sudden changed?" We went on with the transaction. She was slow as molasses and mumbled like she had a mouth full of marbles.

And then...then came the questions from the order taker turned pill police. "Do you ever forget to take your medication? Do you take two pills a day every day?" Any time I need to call this pharmacy, which, by the way is owned by United Health Care, they ask the pill police questions. Once I said, "Excuse me, are you the pill police?" Another time I asked,"And where did you get your medical degree?" Yes, I know it is their job, but I find it intrusive.

Some kind of old anger surfaced today when the mumble mouthed, order taking, answer faking pill police started the questions. I said, "Look here, I give lectures on these medications. I am the program director for the Lupus Foundation of Florida. This is a discussion I will have with my doctor but not with you." To her credit she said, "Ma'am you can just say you don't want to answer the questions." I said, "Fine, I donl't want to answer the questions so please don't ask any more."

What troubles me here is that I thought I was well over the anger of my encounters with all things medical. I trust and respect my rheumy. I am glad labs exist. I give thanks several times a day for my medications. But today, out of the blue, an old batch of anger surfaced. I felt all the sensations of anger and defensiveness in my body.

This afternoon, I sat for meditation. The pill police incident was nowhere in my conscious my thoughts. Tonight I realize that my anger was not the anger of having a chronic illness like lupus. My anger was about the system that controls our care, patronizes us, and treats us as less than human.

Tuesday, August 28, 2012

The Pantry Door

I forget things, probably because I always have lots of projects and ideas buzzing around inside my head all the time. I have tried lists. I have tried breaking projects down to specific tasks and putting each task on a note card. I have tried sticky notes. I have tried notebooks. All of these things have helped, but I still end up with that constant background noise of unfinished projects draining my energy.

Recently I read a book about mind mapping. Honestly, the book was horribly written. I decided to try the concept anyway. I sat down with paper and colored Sharpies and quickly made a bunch of mind maps for different projects. Of course, I ended up with a pile of mind maps! Last week, I made a mind map for the week. There were lots of things on the map. As I looked at it, I thought, "You are nuts. You are never going to get through all this stuff this week! You are setting yourself up for failure."

I posted the mind map at eye level on the pantry door, a place that I pass at least a gazillion times a day. Much to my surprise, by the end of the week everything was done. Instead of being immobilized because I could not figure out which thing to tackle next, I just looked at the map and picked one thing. My week was peaceful and productive. I could get into this!

This is a picture of my mind map for this week.

Saturday, August 18, 2012

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!

Thursday, August 16, 2012

Chloroquine Retinopathy

Last month I had my field of vision screening for chloroquine retinopathy. I take a drug called hydroxychloroquine (Plaquenil) an anti-malarial that helps control lupus. It takes about 6 months to take full effect. I have been on it for 9.5 years.

It's a great maintenance drug, but it can mess with your eyes. My field of vision was not good. The opthamologist sent me to the retina dude. After another hour and a half of testing, he concluded that the field of vision issues were not caused by the drug, but that I require serious monitoring every six months.

The drug can build up on the retina affecting the rods and cones. Apparently, they change color and sometimes that shows as a bulls eye lesion as in this picture. I saw the pictures and this is not happening in my eyes. Yay!

People who take plaquenil, please follow your schedule of eye exams. People who have been on plaquenil for over 5 years and those over age 60 are at particular risk. Just do it!

Saturday, May 26, 2012

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.

Tuesday, May 22, 2012

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.

Thursday, May 10, 2012

World Lupus Day May 10

A post today read, "Celebrate World Lupus Day by raising awareness." Celebrate? Really?  Raise awareness? I can do that. I can celebrate my chemically induced remission. I can celebrate the great minds that developed medications that allow me to keep my kidneys. But I won't celebrate lupus.

My observance of World Lupus Day is renewed determination: determination to find the cause and cure by supporting research, determination to be a voice for lupus patients through advocacy, and determination to help people with lupus live their best life.

But the best celebration by far would be a world in which there was no need for a World Lupus Day.

Please join me in supporting the Lupus Florida Lupus Walk

Saturday, May 5, 2012


Why me? Why not me? When we are sick, we ask why. When we are healthy we do not ask. We ask because we are trying to grasp the incomprehensible. We have to make sense of the suffering. Somebody or something is to blame. We have to know. If we knew, maybe we could do something about it. If we knew, this would all make sense. But we don’t know and it doesn’t make sense. I can use my energy to ask why or I can choose another reaction. I have that choice. I choose to manage my disease today.

Saturday, April 28, 2012

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.

Wednesday, April 18, 2012

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?

Monday, April 9, 2012

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."

Friday, April 6, 2012

A Lesson from the Crud

I got the crud. I thought I wouldn't get sick, but I did. With the lupus well controlled and lots of good self-management tools in my tool box, I have managed to stay very healthy over all. But Monday night, that familiar clammy feeling and irritation in my throat heralded the arrival of the crud. (People don't seem to use the word crud much anymore. I think we should bring it back!)

I got antibiotics early Wednesday morning and soldiered on through stations of the cross, played a funeral for the matriarch of the Irish Travellers that winter at our parish and made an hour and a half lupus presentation to the Osceola County school nurses-a 200 mile round trip. A tanker truck of hot tea and broth, swigs of Dayquil from the bottle, and a good friend who offered to do the driving got me through.

But did I have the good sense to rest on Wednesday night? No! I was bound and determined to go out to the evening concert of Tampa Taiko. And I did. I rested a lot on Thursday and only had Mass in the evening. Despite the wonders of Nyquil, I woke myself up hacking in the wee hours of the morning.

This morning, I felt the need to reflect on my behavior. The first thing that came to mind is that soldiering on like I did on Wednesday is my own sneaky form of denial. Denial, by its very nature, does not like to be examined in the light. This is a denial that got fat after decades of my feeling miserable with no respite in sight.

But denial is not the only thing that comes into play here. I learned early on in my journey with lupus, that taking a couple of days off really didn't make a difference. I learned that I could be sick at home or be sick at work. Either way, I stayed sick. A common cold with lupus could last for 3 months! I am 60. Old patterns die hard.

Since I have gone into remission, I have had to learn new ways of deealing with the common ailments that afflict everyone from time to time. I have learned that doing nothing for a couple of days, napping a lot, and plenty of warm fluids can often stop a cold in its tracks. I forgot that lesson this week. I am remembering to follow that lesson today.

Saturday, March 31, 2012

Sand Paper in the Soul

There are times, and today is one of them, when I feel like I have sandpaper in my soul. This is hard to explain, but I bet many of you know this feeling. I will try to articulate this. The feeling manifests as agitation and immobilization. You feel like you have to do something, but you can't get started. Little things are irritating-unbelieveably irritating.

It as if someone or something was inside of the physical shell of who you are and rubbing sandpaper on the inside of that shell. It is not really about circumstances, but they do play some role. It is just a feeling that will pass, soon I hope.

So, for today, I will just observe the sand paper and be still until it passes. It always passes.

Monday, March 5, 2012

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.!

Sunday, February 26, 2012


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.

Saturday, February 25, 2012

Typhoid Mary

We have all had the uncomfortable experience of being around someone who has been diagnosed with cancer or who has a loved one diagnosed with cancer. We don't know what to say. We don't know how to act. We don't want to ignore it, but we don't want to acknowledge it either.

When otherwise healthy people are around those of us with chronic illnesses, it's not much different. You see, we are a walking, breathing reminder that it can happen to them to. In fact, more than one in three Americans has a chronic illness.

In order to make sense of this, healthy people try to figure out why we are sick and they are not. They are looking for a way to convince themselves that they are going to be OK. They are looking for something in us that they can blame for our condition.

As I was wheeled into the emergency room with congestive heart failure brought on my lupus, my friend said, "If only you stopped smoking you would not be here now." Recently, a lupus patient shared the fact that her brother blames her lupus on her weight. (Of course the steroids used to treat the lupus might just have something to do with that!)

In these situations, it is helpful for us to take a step back and put things in perspective. What these people say sounds terribly judgemental. When we hear it, we are angry and defensive. But if we realize that this kind of blaming is how they make sense out of what happened to us and that they are desperately trying to reassure themselves that they won't suffer the same fate, we can choose a different reaction.

Saturday, February 18, 2012

I Don't Know How to Do This

Yesterday, I came home from a long and challenging work day to find a message on Facebook from my first ex-husband. My father is in hospice with colon cancer and would like to see me. My father and I haven't spoken or seen one another in 26 years. I am going this morning. I don't know how to do this.

When I got the word, I called or emailed 3 of my strongest "go to" people. The chats were brief. There is hardly any advice one can give in situations like this. They know that and so do I. I was able to step back just enough to look for the right resources. Hospice chaplains know how to help people do this. I will meet with the chaplain before I go in to see my father.

When we are diagnosed with a chronic illness, we don't know how to "do this." I certainly didn't. But after a period of deep despair and depression, I had a moment of clarity that changed my life and my relationship to my lupus. I thought, "If I am going through this, then other people have gone through this. Some of them have come out successfully on the other side. Some of those people must have written books about it. I will find them and I will learn."

In our pain, whatever pain that might be, it is easy to isolate ourselves. It's easy to crawl in a hole and pull the hole in after you. It's easy to believe that you are the only person who is suffering. The truth is we all suffer at one time or another. Reaching out to people who can light our way makes all the difference.

Friday, February 17, 2012

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.

Saturday, February 11, 2012

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.

Wednesday, February 8, 2012

Using Exercise to Improve a Chronic Illness

Welcome Jenna Walters who graciously offered this guest post to my my blog.

The benefits of exercise are undisputed for healthy individuals, and cancer patients and others with chronic illness also enjoy improved life-quality with an appropriate exercise regimen. The National Cancer Institute encourages exercise for cancer patients and survivors as not just an option, but a priority.

Exercise and Cancer Treatment
A panel convened by the American College of Sports Medicine (ACSM) set out to develop guidelines for exercise and physical activity for cancer patients, such as sufferers of Mesothelioma, that are undergoing active treatment or have concluded treatments. The panel found abundant evidence that physical activity promotes an improvement in life-quality for patients with chronic illness. Patients on chemotherapy or radiation therapy are capable of more exercise than previously thought and even light exercise is proven to be more beneficial than none.

Beginning Small and Setting Goals
Range-of-motion exercises under the guidance of health-care professionals prepare the patient for independence following treatment or surgery, beginning with passive exercises – those where the patient's limbs are moved by another person – if necessary. Setting daily, weekly and monthly goals and tracking improvement keeps the future in positive focus. Many cancer survivors of all types, from lung cancer to testicular mesothelioma, return to previous levels of physical activity, and even exceed them, when a sensible program is instituted during recovery.

Basic Guidelines for Patients
The American Cancer Society encourages patients to exercise as much as possible. Walking, weight training and stretching all contribute to muscle tone, blood flow and deep breathing. Any form of exercise can be adapted to the patient's current strength levels.
The patient should stop exercising immediately and consult her health-care provider if she experiences increasing weakness, loss of balance or falling, sudden or unusual pain, dizziness or vision problems, or numbness in the limbs.

The Caregiver's Role
According to the American Cancer Society, caregivers can play a pivotal role in the patient's exercise program. Caregivers may accompany patients on walks and outings and be upbeat and encouraging, remembering that it is beneficial for the patient to be as self sufficient as possible.

Anything that involves movement is technically exercise and a cancer patient must recognize that what constitutes exercise should not be based on previous activity levels. Perceived exertion during health likely required far more intensive activity than during the period of chronic illness. Walking where one previously ran is not a defeat. Modestly adjusting to new circumstances leads to enjoying a cheerful self-image and a positive outlook for the future.

Saturday, January 21, 2012

Soldiering On

This morning I am reflecting on a young woman who clearly has a chronic illness but her diagnosis remains elusive. As with most chronic illnesses, her health is unpredictable from day to day and even hour to hour. She keeps soldiering on. I did that too until I finally got hauled off in an ambulance.

When we refuse to take the time we need to heal, that is a symptom of denial. When we believe that we are indispensable, that is a symptom of denial. When we say, "I'll be fine tomorrow" without any concrete evidence, that is a symptom of denial.

Part of this irrational thinking is that we have to push ourselves so that we won't let down our loved ones or friends or employers. The truth of the matter is that when we soldier on, we aren't giving our best. When we make promises that our health probably won't let us keep, we are letting them down even more. We create unreasonable expectations and then beat ourselves up for not meeting them.

A good way to find your compass in this situation is to pretend that you are healthy and that someone you love has what you have. What would you expect of them? What would you do to help them? What advice would you have for them? Now, do that for yourself.

Monday, January 16, 2012


Yesterday was the monthly meeting of my lupus support group. A thirty-something young man came for the first time. Before we even started he wanted to know what we "do" in the group. Most first timers have the same concern. In addition, the first time they come to the group is a big step because it means really admitting they have the disease. When we have people who are new to the group, we typically introduce ourselves and give a very brief description of how lupus manifests itself in our bodies. The veterans are pretty dispassionate when they talk about their lupus. We have learned to incorporate lupus, but not make it the center of our lives. When a new person comes to the group, everyone in the group focuses on the needs and questions of that person. I love to see them in action!

This young man was very angry about having lupus. Anyone with a chronic illness knows about this anger phase. We also know that talking about difficult emotions diffuses them. The group ran long-over two hours. At the end, the young man was laughing, chatting, and still asking questions. Support groups are great places to hear how others have learned to live well despite the fact that their diseases and conditions have no cure.

Most disease foundations have support groups. If you are suffering in isolation, why not consider visiting a group?