At Least My Eyelashes Don't Hurt

One of our support group facilitators at the Lupus Foundation of Florida has a particularly resistant case of lupus along with other complications. Even when her health is horrible, she will say, "At least my eyelashes don't hurt." Jon Kabat-Zinn says it another way in Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. "If you are breathing, there is more right with you than there is wrong."

When one part of you is in pain, all parts of you suffer. The more you think about the pain, the more it consumes you. We can step back and do a mental scan of our body and note what parts do not hurt at that moment, and like that facilitator, observe that "At least my eyelashes don't hurt."

In the chronic disease self managment workshops that I facilitate, we teach patients to use distraction when they have pain. Of course, distraction should never be used if you have chest pain! Examples of distraction are counting backwards by threes starting at one thousand, trying to remember all the words of an old song, or anything that engages the mind. I disovered that no matter how much my wrists and fingers hurt, I did not notice the pain as long as I was playing the piano. The mind cannot think of two things at the same time. What would work as a distraction for you?

What Did You Do?

Lists. Many of us use them to keep ourselves organized. When we make a list, we have a certain determination that we are going to get things done. That's not a bad thing. Lists can also be discouraging. As time passes, and things don't get checked off, we start to beat up on ourselves. We are failures. That IS a bad thing. The last thing we need is to feel worse.

When I feel bad physically, I obviously can't accomplish much. One day, I decided to make a list of everything I did do, rather than what I thought I should do. I got up, made tea, took a shower, got dressed, made breakfast, ate, put the dishes in the sink (although I didn't wash them), and on and on. At the end of the day, I had quite a list of things that I did do. I just hadn't paid attention before.

When you feel like you aren't getting anything done, take just one day and write down everything you do. I think you will be surprised!

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?

Fudge and Rum Balls

Every year since I was pregnant with my second son 33 years ago, I make fudge, rum balls, and other assorted treats. Even when the lupus was flaring, I dragged myself to the store and dragged myself through the baking. The thought of going to see my family without my traditional goodies was inconceivable. How could there be Christmas without fudge? This year, I made two pans of fudge. That's it. The ingredients for the rum balls are still sitting out on the counter. Maybe I will make them this week, maybe I won't.

What I knew intellectually, but finally have taken to heart is that the only person that seriously cares about making the fudge is me. My sons and their families don't have an emotional investment in fudge. I do. I created a tradition all by myself and then became a slave to it. Why do we do things like that? I don't have an answer. What I do know is this; awareness is the first step to change. I can do that. So can you.

Christmas Children

And there were shepherds abiding in the fields, keeping watch over their flocks by night, and the angel of the Lord came upon them, and the glory of the Lord shone 'round about them, and they were sore afraid. And the angel said, "Fear not, for behold I bring you good tidings of great joy, for unto you is born this day in the city of David, a Savior, which is Christ the Lord. And this shall be a sign to you, you shall find the babe wrapped in swaddling cloths and lying in a manger."

Blessed Christmas!

Grace

Christmas is a horridly busy time for me. In 24 hours this year I have 5 Masses in 3 different places, a pageant, and a half hour concert with teenagers. It's a tight year! Last night, I rehearsed with the teens. Teens are the most amazing people because they don't know what might be impossible for them. They just know they have to get it done. They did very hard music and they did it well.

This afternoon, I rehearsed with the wee ones. No shepherds showed up and we were short one wise man. We pressed the angel Gabriel into service as the third wise man with a quick costume change. The multitude of the heavenly host consists of Gabriel and 3 year old twins who adore their costumes and wings. Joseph found it fascinating to turn his head dress backwards so that it covered his face. Mary beamed non-stop through the whole thing, glowing with the innocence of her namesake.

It won't be perfect no matter how much we rehearse and it doesn't have to be perfect. This is my 40th year doing Christmas as a church music director. One thing I have learned is that "it is what it is" and that it will all be just fine. It's more about the people and the process than it is about the product, although if you pay attention to the people and the process then you actually get the best product possible.

It's much the same when it comes to living with chronic illness. We do the best we can, and then we let go. It is more about our relationships with people and about our process of adapting to living with chronic illness than it is about a product.

As I was able to be gentle with the wee ones and their parents, reassuring them that all will be well, I hope this holiday season that you will know that all will be well. My prayer is that you can realize that the people and the process are the most important parts of the holiday and the chronic illness journey.

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!

Holiday Crunch

During the pre-holiday season, women are particularly inclined to exhaust themselves in an effort to create the perfect Norman Rockwell holiday. For those of us with chronic illness, this is a particularly risky time. We think that we can just push a little more, and a little more, and then just a little more and that we will recover later. As the holidays draw near, we keep on trudging, knowing in our hearts that we are doing too much.

Reality check. What is the most important thing about the holidays for you and your family? Does your family really need 15 types of cookies and pies? What do they think is more important-you or the 15 types of cookies and pies? What do you think is more important? Is it really a good holiday if you have all the trappings but you end up crashing and can't enjoy time with the people you love? If you do just one thing this month, ask yourself several times a day, "What do I need to do to take care of myself right now?" If you end up in bed, or worse, in the hospital, what kind of holiday will your family have?

Stronger Together

Today was a very long day. I knew I would be late to our lupus support group, so last night I called Valerie to start the meeting. I had to come late, she had to leave early. Perfect.

There is a theoretical end time for our group. We never observe it. People leave when they need to leave. People stay as long as they need to stay. I love this group. When only veterans show up, we do talk about lupus issues but quickly move on to "just being human" issues. When new people come to the group, everyone attends to that new person. How beautiful!

Today, we talked about how, when you are diagnosed with lupus or another chronic illness, you feel like you are plucked out of life and that everyone else is going on in some movie of healthy people that you can only observe from outside. We found common ground talking about this. Simple things like observing our experiences and talking about them make us stronger together and as a result make each of us stronger as individuals.

Lighting the Way for Others

I love to wear big sweatshirts on cold days. Here in Florida, we have had a few almost chilly days that were cool enough for a sweatshirt. Last week, I was coming in from the grocery store wearing my Lupus Florida Walk sweatshirt. A neighbor stopped, and speechlessly pointed at the logo. After a brief silence she asked, "What do you have to do with that?" I said, "First, I have it. Second, I work there." Silence again. "I was just diagnosed with lupus myself," she replied. I asked if she had any books on lupus. She did not but was interested. We agreed to meet next week.

Later that night I pulled a pile of lupus books off my shelf, put them in a bag, and hung the bag on her doorknob. Tonight, I am reflecting on just how isolated, lost, dazed and confused I was after my own diagnosis nearly 9 years ago.

A well intentioned choir member gave me the book The First Year--Lupus: An Essential Guide for the Newly Diagnosed. As soon as I got home, I put the book face down on the table on my balcony. Sometimes, I tried to muster the courage to even read the back cover. I finally got the courage to read and then the courage to read more and more.

Those books that lit the way out of the despair of my diagnosis, now, they will light the way for another person. When I was diagnosed, I couldn't find a physical person to light the way for me. But I can be there to light the way for her and others.

If you have just begun your journey with chronic illness, there are people and books that can light the way for you, too. You aren't as alone as you might think!

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.

Being Good to Yourself

Among performers, the week before a show opens is known as hell week. No matter how carefully you plan and prepare there are always unforeseen obstacles and emergencies. Hell week for Grease at my school was no different. Within a few hours, I jumped each hurdle. We had three very successful performances. Playing piano for and co-directing a show is intense. I also had three Masses to play this weekend and our traditional Saturday cast pig out at Village Inn after the show.

Today, I tried to take it easy. I did my after school rehearsal with the show choir. Some of the girls stayed late with me because we were researching options for the spring show. As I left school, I mentioned that I should go walk 3 miles. I have slacked during the last weeks of the show. One of my seniors turned to me and said, "Miss Linda, you need to go home and rest. Are you crazy?" She was right.

We are so used to feeling tired or sick or in pain, that we often push ourselves to compensate. Where a person with a cold or the flu will stop, rest and recover, we know there is no real recovery-just periods that are a little better than others. So, we soldier on and on and on. We need to be good to ourselves. (I don't follow my own advice very well, but my friends and students remind me.)

We expect an awful lot of ourselves. A useful exercise is to imagine that you are a healthy person and that someone you care about has a chronic illness. What would you expect of them? What help would you give them? What advice would you give them? Now, apply that to yourself. Why do we expect so much of ourselves? Why don't we ask for and accept the help we need?

We have to love ourselves enough to pay attention to what we need. We have to love ourselves enough to allow others to help us. We have to love ourselves enough to be good to ourselves.

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!"

What Feels Good?

It's easy to get so caught up in coping with chronic illness that we forget what feels good. In fact, it is so easy, even for healthy people, to get so caught up in the daily grind that they forget what feels good, too. Decades ago, when I was caught up in raising small children, going to college, and buildling my career, I read The Language of Letting Go by Melodie Beattie. I already had lupus then, but did not know. The doctors chalked up my fatigue, joint pain, and frequent colds to stress and working too hard. Anyway, in one of the daily meditations, Beattie asks, "What would feel good? What wouldn't feel good? What do you want? What don't you want?" I wept. I was so busy with my life and so busy being tired that I could not answer those questions.

Fast forward 25 years or so. I am reading and working through The Artist's Way: A Spiritual Path to Creativity by Julia Cameron. More than once, the reader is instructed to make a list of 20 things she enjoys doing. The first time, I could think of six and then got stuck! For number 7 I wrote, "OUCH! STUCK!" Since then, I am happily remembering little things that bring me pleasure and incorporating them into my life.

When we are feeling down, overwhelmed or sick we don't remember the things that make us feel better. Why not make a list for yourself? Add to the list as you remember what feels good. Post it where you can see it so when you really need a boost, you will have a reminder. Just because we are sick doesn't mean we have to deny ourselves!

I'll Take My Lupus, Thank You!

Yesterday, I played a funeral for an 18 year old boy who was killed in a motorcycle accident. Playing the organ for the funerals of children and teens has always been the hardest part of being a church musician. Later on, I learned that this was the third child in this family to die tragically. The first died in a car accident and the second was shot. I can't imagine the pain of those parents. In light of what happened to this family, I am thankful that my family is healthy and alive and that all I have to deal with is lupus. It seems very insignificant in comparison.

Along the way, there have been people who told me to be thankful that I don't have something worse. Considering that the lupus affected my heart, lungs, bone marrow, blood, kidneys, joints and brain, that was a little hard to imagine. I would think to myself, "How dare you say that? You have no idea what it is to be me, living with lupus." Someone else's suffering does not make our suffering any less. Sometimes, I would respond with a smart remark like, "Yeah, I am so thankful I don't have leprosy and that my nose isn't falling off on the sidewalk!"

I now know that 125 million Americans have some kind of chronic illness. I have learned to live well with lupus. My "new normal" life is pretty good. I know the wolf. I have learned to keep him calm most of the time. So, as I write I am thinking that if I have to have something I'll take my lupus, thank you!

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!

The Myth of Venting

This morning I turned off the email notifications for almost all the Facebook illness groups to which I belong. Why? Every day, all day, it is the same thing…people carrying on about every little detail of their chronic illness. They post pictures of rashes and bruises. They obsess endlessly about each symptom. Many of the posts begin or end with the words, “I just need to vent.” Where did we get this idea? Does venting really make anyone feel better? Is our experience of chronic illness validated by telling others how much we suffer?

I will be the first to say that the only way to deal with difficult emotions is to express them and then move on. The only way out is by going through. There are no shortcuts. In fact, buried feelings don’t die, they come back even stronger. We need to explore our feelings and express them. Usually, that expression has to do with words-speaking, journaling, meditating on them. This is far different from “venting.”

Sometimes the pop psychology notion that “venting” is good, is merely a cover for ruminating about our situation. People who vent usually have a litany of complaints that they repeat endlessly. It’s their rosary of suffering. “My partner doesn’t understand. My doctors are stupid. My meds make me nauseous. I wish people could be in my situation, and then they wouldn’t say stupid things. Why doesn't anyone care about what I am going through?” Nothing changes for the better when we do this. In fact, we feel worse because we are consumed with the unfairness of it all. Is it unfair to have a chronic illness? You bet it is! Does complaining help? Not at all!

Instead of “venting” we need to find constructive ways to express what we are feeling. How do we do that? The first thing is to quiet both the body and the mind. As long as was are agitated, as long as we are engaged in incessant mind chatter, we can’t do much else. Journaling is one of my very favorite tools for expressing difficult emotions (and good ones, too). All you need is a notebook and a pen. Go to a quiet place like a park, bookstore, or library. Go in your room and close the door. This time is for you and you alone. Check in with yourself. Start with the question, “How are you doing today?” Then write whatever comes to mind. Don’t censor or edit. Just write. Ideally, you will want to write for 15-20 minutes each time. It takes that long before things really get moving. If you do this several times a week, you will notice that you are “venting” less and living more.

Catching Monkeys

There is a wonderful story about an African tribe and their technique for catching monkeys. They put something monkeys love to eat in a jar with an opening just big enough for the monkey's hand to slip inside. The monkeys come, insert their hands, and grasp the treat but they are unable to pull their hands out while holding the treat. The monkeys become so engrossed in trying to get the treat that they do not see the hunters and are caught!

When we are diagnosed with chronic illness, we desperately want to have our old life back. We long for it. We hold on to how we used to be. We put our hand in the jar of the past and refuse to let go. We get stuck. We get caught in the past. And all that thinking, wishing, and grasping is stressful. Stress makes us sicker, no matter what condition we have.

Once we manage to let go of how we used to be, we have empty hands that can be filled with something new. Once we let go of who we used to be, we are free to become a new person, to recreate ourselves.

What would your life be like if you stopped trying to go back to the way you were before you got sick? What would your life be like if you took stock of who you are and what you can do right now and used that as building blocks for your new life?

"If you are breathing, there is more right with you than there is wrong." Joan Borysenko

Life Expectancy

Halfway through my daily walk, I stop for five minutes to really savor the view of the bay. At dawn and dusk, the pelicans and seagulls are gliding over the water looking for some tasty fish. I usually think about the birds and wonder how they can see fish through the glare of the sun on the water. But this morning, when a seagull dove to catch a little fish, I thought about the fish instead.

Here was this little fish, swimming along happily near the surface of the water, probably enjoying the warmth of the sun and SPLASH BAM he is in the belly of a gull. I stopped and thought about life expectancy. Patients ask me all the time what their life expectancy is with lupus. When I was first daignosed in 2003 that was one of my top three questions. My rheumatologist didn't have an answer. I don't have an answer for the patients who ask me.

When we get ourselves all tied up in the issue of life expectancy, we forget to live now. That little fish was not sitting around wondering how long he would live. It was doing what fish do, swimming and eating. Sick people can often live for a long time. Healthy people can die suddenly, just like that little fish. What matters is what we do with the time we have right now!

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.