Sunday, December 28, 2008

New Year

People make a fuss about the New Year. The New Year is a time for looking back over the last year. The New Year is a time for new beginnings and resolutions. In my family, pickled herring was a New Year’s requirement. Everyone had to have a piece. I happen to like pickled herring. My kids never took to it. In fact all my loved ones hide when I pull out the jar of herring! I have a dear friend who must have black eyed peas. I think they taste like old gym socks, but he eats them religiously every year. One good friend is Jewish and one is Chinese. They have New Year on different days and months.

But calendars and clocks and New Years are all very superficial and contrived. Time is a human concern. The only thing that matters is this second. That’s what you have and that’s what I have. We get to make choices right now. All the resolutions in the world mean nothing unless we make the choices now. Does that mean we don’t plan for the future? Of course not! Life is full of paradoxes. We live now. We learn from our past, but we don’t live there. We prepare for the future, but we can’t predict what will happen there.

Life is imperfect and often messy. I realized this over Christmas in a new way. One son did not show up at the other son’s house. Strange things seemed to be happening. The other grandma hit the nail on the head. Son #2 did not have money for gifts and was embarrassed. Son #1 is doing well and felt deprived because he could not give the gifts to his brother. Son # 2 made excuses not so see everyone else. Once I unraveled this, I shared the information with the right people. Life is messy. And that’s just fine. Music at church was good, but not as good as I had hoped. Since I am the music director, that sort of matters, but I also realized that life can be a little messy there. And just like my family, everyone grew a little from the messiness of the experience.

So, instead of grandiose resolutions, instead of expectations of near perfection, instead of lists of things I wish I would do, I have a very simple resolution. This year, I will continue to strive to make now the most important thing and to realize that life is messy and that’s OK. Thanks be to God for the messiness of life!

Sunday, December 21, 2008

What Matters

For 4 weeks a “head thing” has been trying to get me sick. But I am smart, so I flushed out my sinuses many times a day and stuck Zicam up my nose. I was sure I would outsmart the rhino virus or whatever was after me. And then…then it went to my chest. This is a big deal for those of us who have autoimmune disease and take immunosuppressive drugs. We can die. I don’t freak out like I used to, at least not as much, but I do take it seriously. So, I called my rheumy, a good friend and a great and caring doc. I left a message at 2 PM. By 6:30 PM I had no answer so I called his cell. I take having my doc’s cell as a very special privilege and never abuse it. But I was gacking up yellow stuff which is a danger sign. I called. He answered. The “girl” had never given him the message and he called in the antibiotics. Never let the pit bull gate keeper prevent you from getting the medical help you need.

You (and I) have a right to get the help we need!
So today, I gacked and hacked and gurgled my way through 2 Masses and 2 rehearsals. Sure, I missed just a few notes biuit was pretty good considering that over the years I have learned to gack and hack while playing and avoid doing that during the sermon or readings. But wonderful things happened. There is this fantastic mature woman in the parish who does quiet, gentle and caring things. After she went to communion she dropped by the organ and handed me a much needed cough drop. Nice. Then Mass at 11 was a Youth Mass and time for the praise band aka Mustard Seeds. For the first time in a year and a half, they were an ensemble, a group, a community. They had this amazing intuitive sense of the music and each other. I was tired and sick and all I wanted to do was go home. But those of us with chronic illness have learned that we work, sick or not. We have learned that you may feel bad, but that staying home does not fix it, so you go on. And that is what I did. An hour into rehearsal I was thinking about how to end it. But the youth were so attentive that I continued. They did amazing things. They did hard things musically that I would never have dreamed they could do. They didn’t know these things were hard so they did them. I didn’t know that living with chronic illness was hard so I did it. You can too.

Christmas is coming. I already got the biggest presents. I got to see kids do more than they knew they could do. Kids who wanted to kill each other (hormonal girls and the subject of another post) put their differences aside and declared themselves BFF. Peace on earth and good will toward one another can happen. We simply need to open our eyes to what is important.

Monday, December 15, 2008


On Saturday, my youth group went caroling to two nursing homes. Ever since my lupus “crash” which was very nasty and serious, I have had a sense of panic every time I go into a nursing home. I get overcome with FEAR. But FEAR is False Expectations Appearing Real. It’s not rational or logical, it washes over you. The fear before my kidney biopsy was a real fear, and has some basis in reality. The nursing home fear probably does not.

So, I approached this little excursion with mixed feelings. I did not want to go because of that wave of fear that was likely to come over me. But, I wanted to be there to lead the teenagers and support them. So I went. And much to my surprise I did not feel the wave of panic. What I saw was older folks, many of whom were lonely. But I have learned something from the losses and changes that chronic illness brings. Everybody loses things. Everybody changes. For those of us with chronic illness, it just comes earlier and faster. That’s all. In the time between my last panic episode at a nursing home and this one, I made peace with those losses and changes, and maybe even embraced them.

The youth seemed uncomfortable and even a little troubled. After they sang, I asked them to go talk to the residents, shake hands if the person could, introduce themselves and ask the resident their name. They did. When it was time to leave, I had to drag them out.
At the second home something wonderful happened. Some of the residents joined in the singing. There was this one woman that I will never forget. As we sang the chorus to Angels We Have Heard on High, her face softened and she looked almost young. She closed her eyes. It was clear that she was back in a time and place where she might have been the one singing “Gloria in excelsis Deo” with great gusto. I thought to myself, “I am making memories now that I can savor later. I will keep making memories, good memories of wonderful experiences.” In that soft smile, in those closed eyes, I received a gift, a reminder to savor now.

Sunday, December 7, 2008

Making Adjustments

After a long hiatus from blogging, how do I begin again? Simple-I begin with a lesson learned AGAIN! When I started this blog, I intended to blog every single day. And for quite a while I did that. There are more than enough issues and challenges in living with chronic illness to blog every day for years! I don’t give up easily, so even on nights when I was really, really tired, I would drag myself to the computer and blog. After all, I made a commitment to myself.
Then, life got in the way. One thing after another required my attention and the blog fell by the wayside. But I’m back. When I teach chronic disease self-management workshops, I ask patients to set goals each week. The goal has to be something they want to do, measurable so they know if they attained the goal, and they need to have a confidence level of 7 or higher on a scale of 1 to 10. If the goal doesn’t meet the criteria, the patients are asked to revise the goal until it does. So my goal was to blog daily. Was it something I wanted to do? Yes. Was it measurable? Yes, if I blogged daily I would know if I met my goal or not. Was I confident? You bet I was, I had a confidence level of 10.
When patients come back the next week, the first thing they do is report on how they did with their goal for the week. If they achieved it, great! If not, they are asked to examine how they can modify the goal for the next week to assure their success. They are asked to examine the obstacles and make adjustments. If changes have occurred in their lives or health, they adjust the goal accordingly.
The point is, life, especially life with chronic illness, requires constant adjustments. When we need to make an adjustment, we are not failures; we are reading the signs and practicing resilience. Our goals must reflect our priorities and those priorities change from time to time. We need to be gentle with ourselves and not “should” on ourselves. (After all we are potty trained!)
Decades ago I read Your Erroneous Zones, Wayne Dyer’s first book. I don’t remember a lot about the book except that it made sense. But there is one thing that remains etched in my memory. It goes something like this. If you are 50 years old, would you let a 30 year old make decisions for you? If you are 25 would you let a 15 year old make decisions for you? Of course not! That would be absurd! Then why do you stay stuck with the decisions that the you who you used to be made, whether that is 10 years ago or last week? Life, especially life with chronic illness, is about creating a new normal. And that new normal is always a work in progress. My new goal is to blog every Sunday. I want to do it. It’s measurable. My confidence level is a 10. See you next week!

Saturday, September 6, 2008


It’s strange how when you share your views with another person, you end up clarifying your own thoughts. This is why when you teach something, you really appropriate the knowledge far more thoroughly than when you are a student. What provoked tonight’s rumination? A phone call from a patient! We talked for quite a while about support, and more importantly, the lack thereof. As I listened, I tried to really hear what this person was saying. I shared similar experiences. People with chronic illness often lament that “they just don’t understand.” No, they don’t. And no, they can’t. Even if people are around, ultimately, we each have to go on this journey alone.

When I was expecting my first child I was terrified. After five years of not using any contraception, I decided that I took after my mother and would have a hard time conceiving. But unlike my mother, I wasn’t obsessed with motherhood and certainly wasn’t going to go through all kinds of medical tests and procedures in order to have a child. I would turn my attention to my career. As soon as I made that decision, I got pregnant. It was then that I realized that each of us has to do the most difficult things alone. Someone “understanding” how I felt when I hurled in the morning didn’t change the fact that I hurled. My husband being with me in labor (22 very long hours) didn’t change the fact that I was the one having the contractions or that I was the one who had to push my son into the world. What was going on in my body was my experience and mine alone.

Back to tonight’s conversation…As we talked, I heard myself say, “I finally realized that they don’t have to understand. They don’t have to get it. Once I let go of the expectation that they understand, once I stopped trying to make them understand, I was free to get on with my life. I was free to make my peace with my illness. I didn’t have to waste energy explaining, describing or convincing. All that energy was freed up to create a new life.”

Saturday, August 30, 2008


This week I have been learning (or maybe relearning) how to set boundaries. In July my rheumatologist told me that I could very well be in remission. With lupus that does not mean disease free, it just means the disease is quiet. But it’s still darn good news. I have been happily living a relatively normal life. Stress is a huge factor in triggering lupus flares. Stress makes any disease worse. Stress even causes disease. Guess who decided to visit me during the past two weeks? You got it-Stress with a capital S.

I have more than one job. I like it that way. If I should start to get sick, I can let one go and still survive. Being in a different place nearly every day, I’m not privy to the politics and gossip that happens when you are somewhere day after day. The other good thing about this arrangement is that I can be honest about what I think and about setting boundaries because I won’t starve if I lose that job.

Two days a week I teach music in a small, inner city, private school. It’s work I love. In fact, I would not have considered going back into the classroom for any other kind of school. Without going into all the gory details, this is where Stress appeared. The new principal doesn’t communicate with the teachers. People from the church are telling teachers what to do and what not to do. I’ve lived through that before. The biggest problem is that, over the past three weeks, my time has been wasted over and over again. Many people would say, “Oh well, you are getting paid to be there. Be happy if you don’t have to do anything.” I don’t buy it! Every second of my life is precious and no one has a right to waste my life, even if they are paying me to do so. I teach because I care about the kids. I get angry when something prevents me from doing that.

At first, I just kind of festered silently, hoping things would work out. They didn’t. In fact, they got worse! So at 8 AM on Thursday morning I remembered that suppressing feelings causes stress. Being taken for granted and not having my time and life energy respected is unacceptable. More concerned about jeopardizing my remission than getting in trouble for speaking up, I went to the principal and expressed my frustration. I said what I needed. I asked how we could fix the problem. The coming weeks will tell whether or not I was successful at effecting change.

My own health and sanity come first. No one else has to agree with me or approve of what I do to take care of myself. Eleanor Roosevelt said, “No one can abuse you without your permission.” I’m not giving permission. A good friend and mentor gave me one question to ask myself in order to keep things in perspective. The question brings me back from reliving things that happened. The question stops me from catastrophizing about the future.

What do I need to do to take care of myself right this minute? What do YOU need to do to take care of YOURSELF right this minute? (Thanks HKJ)

Thursday, August 21, 2008


We get angry, angrier than we have ever been. What are we supposed to do with this anger? We can turn the anger inward. But anger turned inward is depression. We get mad at ourselves for being depressed, and get even more depressed. If we do a good enough job of suppressing anger, we’ll end up feeling nothing-bad or good. Either we feel our feelings or we don’t. There is no picking and choosing, no middle ground. We can turn our anger outward. When do that, we alienate the very people we need to be there for us. Who wants to be around an angry person? We don’t even like being around ourselves when we are angry. We end up alone. And once again, we get mad at ourselves and end up more depressed. We can get angry at our bodies. A lot of good that does! When we are angry at our bodies, we don’t take care of ourselves. Nobody wants to care for a traitor. And we get sicker.

We are frightened, confused and frustrated. Our lives are out of control. This wasn’t supposed to happen. Not now. Not to me. It’s over too soon. We didn’t choose this journey. Of course, we’re angry. Any person in their right mind would be. What can we do? First, accept the fact that you are angry. It’s part of you and you can’t just cut it out and toss it away. Nothing changes until you accept where you are right now. Words are powerful tools for dealing with anger. Write about what you feel. Talk to a good friend or a counselor. Beat a pillow, yell out loud in the car or when you are alone. Sure, it sounds silly, but what do you have to lose by trying? What do you have to gain? Channel your anger into learning about your condition and managing it. Get involved and work for a cure. Make a difference.

Today, I will accept my anger and try healthy ways to express it.

Tuesday, August 19, 2008

Professional Patient, Patient Professional

People with chronic illnesses see lots of doctors and we see them often. We get frustrated when our professionals are not patient with us. But are we being professional patients? I don’t know anyone who wants the job of being a professional patient except for a few hypochondriacs. I don’t know of any training courses that teach one to be a professional patient. When we become good professional patients it is much more likely (though not guaranteed) that our medical professionals will be patient. It’s the old “chicken and the egg” quandry.

What do professional patients do that differentiate them from amateur patients? Professional patients are proactive. They are well prepared when they come to appointments. Professional patients have a list of prioritized questions. They bring a copy of their medication and supplement list. They are prepared to describe changes in their symptoms in very clear and concrete terms. Professional patients learn about their disease and how to manage it. They are partners with the health providers. And, wonder of wonders, when we become professional patients we often find that our professionals become patient! (And if they don’t, then it may well be time to find new professionals.)

Friday, August 15, 2008


Decades ago, I decided to work through the Spiritual Exercises of St. Ignatius with a spiritual director. A Myers-Briggs personality inventory placed me as a pretty extreme ENFP (extroverted, intuitive, feeling, perceiver) like St. Francis. Ignatius was my “shadow,” and ISTJ (introverted, sensing, thinking, judger). The goal was to learn about and develop my shadow. This was not easy. One week, my spiritual director asked me to figure out what hell would be like for me. Most of the time, what I came up with was a bad mixture of Dickens “Christmas Carol” and Dante’s “Inferno.” Of course, some people think hell is accordion music, but since I also play accordion, that wasn’t an image that worked for me! Finally, I figured out what hell would be for me. Hell would be, being alive but having no senses that worked at all. Hell would be living inside your body and being able to think, but unable to touch, smell, hear, see, taste, or communicate in any way with anything outside yourself.

Chronic illness can be like hell. Chronic illness can strip away every means by which we identify who we are. Relationships change or disappear altogether. Our roles in our family become diminished, or worse, we become a burden. Our ability to support ourselves is diminished or lost altogether. Hopes and dreams for the future fly out the window. Without relationships and roles, we become more and more cut off from the world around us. As we become more and more isolated, we experience more and more losses. Soon, we are in a hell much like the one I envisioned in the spiritual exercises.

Stripped of everything, alone in our darkness, we discover who we are at our very core. We are human beings, not human doings. We have value just because we exist. When we discover that kernel within, the last bit of us that is left, we can begin to reach out of that hell to reconnect and to create a new life.

Saturday, August 9, 2008

Blame Game

People will try to blame you for your illness. They can’t make more sense out of why this happened to you. (You can’t make sense of it either.) If chronic illness, or acute illness for that matter, happens randomly, then they are at risk, too. That’s terrifying! The immediate reaction is to lay blame somewhere, usually on the victim. So we are twice cursed. Blaming the victim is nothing new. In the Old Testament, we read the story of Job. Job lost everything-possessions, family, livestock, and his health. Three friends came to console him. After sitting silently with Job for a week, they spoke. What did they say? Job must have done something to incur God’s wrath! In the New Testament, we read the story of the man born blind. People ask Jesus who sinned, the man or his parents? In recent times, a fundamentalist minister went so far as to publicly blame the residents of New Orleans for the devastation brought about by hurricane Katrina! People have always tried to explain the inexplicable, usually by blaming someone.

You will probably blame yourself, too. You will look back over your life and find all the times you should have taken better care of yourself. You will recall all the health warnings and information that you ever read or heard on the news or from another person. If you had only known that your behavior would bring you to this end, you would have made different choices. Fill in the blank, “I should have_____” There are as many answers as there are people who get sick.
Blame serves no useful purpose. When others blame the victim, they are not protected from what they fear most-becoming victims of illness themselves. Their self-righteousness does nothing to alleviate our suffering. Their judgments don’t console. Blaming ourselves doesn’t help either. In fact, it is downright destructive. The time and energy you spend trying to figure out what you did wrong or berating yourself won’t change the fact that you are sick. That time and energy could be directed toward creating the best life possible for yourself. If an honest examination of your past reveals that you could have made better choices, resolve to do that. Dwelling in that past, however, robs you of the present. Dwelling in the past keeps you hopeless and helpless. When you look at the past, learn from it, and decide to live in the present moment, you become an empowered patient.

Wednesday, August 6, 2008

Life Sentence

People get sick. They get treatment and then they get better. Or people get sick. They get treatment and they die anyway. These are the models of illness we know best. But in chronic illness, people get sick, get treatment, and stay sick. The goals are management and quality of life, not a cure. Get well soon rings pretty hollow when there is no cure in sight. Chronic conditions are expected in old age, but not in the prime of life. We haven’t been given a death sentence. We’ve been given a life sentence and there is no hope for parole.

A life sentence is pretty hard to accept. So we challenge the diagnosis. We repeat tests and run from specialist to specialist, hoping to get a different answer. Insanity, by the way, is doing the same thing over and over while expecting different results. Something curable would be nice. If traditional medicine can’t give us the answers we want, we look for “natural” cures. Maybe, just maybe, that exotic foufou leaf concoction holds the answer, or magnets, or inversion swings, or the latest fad cure diet. Now really, would millions be spent on research if these things really did the trick? You know the answer. Still, we know we’re the exception that proves the rule. We’ll find that elusive cure all by ourselves. There are no magic bullets out there. Call it hope if you wish, but it’s a form of denial. Before you start getting defensive, denial, in the early stages after diagnosis is not all that bad. Denial protects us from harsh realities. Denial gives us time to regroup and make adjustments. Denial makes time for the implications to sink in. Want to live successfully with your illness? Let the denial cushion the blow for a little while. Then use acceptance as the starting point for transforming your life.

Tuesday, August 5, 2008

Don't Shoot the Messenger

Just like medication, nurses and doctors are annoying reminders that we are sick. We have to keep seeing them, but we often don’t get much better. When we are in a better period, we don’t want to be reminded about our condition. When we are feeling sick, we don’t want to be frustrated by the fact that this visit is not likely to make us feel better. It’s is the rare doctor’s office indeed, where you don’t have to wait for an hour or more past your appointment time. Once you are lucky enough to get into an exam room, you realize that this is just a different room where you get to be on hold. It’s easy to get frustrated and impatient. And because the encounter with the medical system is always an encounter with our condition, we get even more upset.

It helps to remember that the nurse, physician’s assistant and the doctor are not your disease. I agree that things could be better. But by being a crabby patient you aren’t going to win any battles. And don’t forget that people usually go into medicine because they want to help people. Our disease frustrates them, too. Balance is the key. As a patient, we deserve to be treated with respect and to have our time respected. We also need to afford respect to the folks in our medical offices.

If you encounter problems, take a deep breath and decide how you will react. Remember, we can’t control what others do, but we can control how we react to it. If necessary, write a letter to your doctor calmly calling attention to the problem or bring it up at your next appointment.

Last week I went to see my rheumatologist loaded for bear. I had several unpleasant telephone encounters with the new young lady at the front desk. I nicknamed her the pit bull gatekeeper. After fantasizing all kinds of bodily harm for three months, I calmly explained to my rheumatologist that I had been quite sick and needed to speak with him, but that she proved to be a nearly insurmountable obstacle. He explained that she was a temp, now gone and that I could always feel free to just come in or call him on his cell. What could have been a confrontation and damaged my relationship with my doctor was resolved calmly.

Monday, August 4, 2008

The Psychiatrist

More from Orlando...

In October of 2003, the protein in my urine was still very, very high. In September, I had lost the job with insurance, but had a small window of coverage so I did the dreaded kidney biopsy. Lupus nephritis requiring chemo. I was devastated, in fact, became suicidal. I did still have the presence of mind to know that trying to figure out how to go to sleep and never wake up, not a good thing, I made an appointment with a psychiatrist. I explained my situation and that I was afraid if I felt this way too long, I would begin to think it was normal. He had two recommendations, Lexapro and a Christian Counselor. The rheumatologist told me that Lexapro was safe to take with my other meds, but I still wasn’t altogether comfortable with that. I did a little research before the appointment. So I asked the psychiatrist how he knew it was a serotonin problem. His answer was that he didn’t know, but that sometimes it helps. I was still skeptical.

Then came the recommendation that I see a Christian counselor. At that point, I already had 35 years of lay professional ministry under my belt. I had run into more than my share of “Christian counselors” along the way. I replied, “I can quote the Judeo-Christian scriptures forward, back ward, inside out and upside down. The last thing I need right now is some kid who went to weekend Bible college for counselors telling me that God never gives us more that we can handle, I am being tested, what doesn’t kill me only makes me stronger, there is a lesson to be learned, or that we all have crosses to bear.” The psychiatrist responded with, “I guess that’s a no.” He made a lame guess at the cause of my depression saying that I must have been caught of guard and not been well prepared about the kidney biopsy.

Here I was, 51 years old, living alone, no job, no income, barely able to take care of myself, on food stamps, with an eviction notice on my door and an estranged husband trying to see me for alimony based on my earning history. Mind you, I had already told him all of this. There couldn’t be a bigger disconnect between therapist and patient. I began to gather my things to leave when he said, “You know, you are very interesting. I would be willing to see you for talk therapy just for what your insurance will pay.” I decided to give it a shot. I left without the prescription and made an appointment for three weeks later.

I did learn one critical lesson from that first visit. Nobody was going to be able to make me feel better emotionally. This was something I had to do myself. I figured that if I was going through this devastation, other people must have gone through it, and some of them probably wrote books. I headed off to the library. I rooted around the internet. And I found quite a few books. At that point, my cognitive impairment was still pretty severe. I would go to the stores and not remember how to get home. After sitting and crying for a while, I would just start driving and hope something would remind me. Anyway, I could not remember what I read from one paragraph to the next. I began making bibliography cards and note cards, just as you would do for a college research paper. As I read and took notes, I began to feel better. Emotions had been swarming around inside of me like a hive of angry bees. The books helped me name them. Some ancient religions held that if you knew the name of a god, you had some power over it. When Moses asks God’s name, the answer is I Am. Moses wasn’t getting the name. Once these hundreds of emotions had names, I had some control over them.

Three weeks later I returned for my appointment. The psychiatrist commented that I looked so much better and how glad he was to see that the Lexapro helped. Quietly and calmly, I asked him to look in my chart. He looked at me quizzically. I repeated the request. When he opened the chart, out fell the prescription. Now he was really perplexed. “What happened?” I leaned forward as if I was going to reveal a phenomenal secret and in a stage whisper said, “I got a HUGE plunger, and got my head out of my rear end.” We talked for a few minutes. I never went back.

(Note: If you feel suicidal, get help, don’t wait for it to get better. Sometimes medication IS the answer.)

Sunday, August 3, 2008

Give Us Information

For the past few days, I have been in Orlando, Florida at the Rheumatology Nurses Society Inaugural Conference. They invited a rheumatoid arthritis patient and a lupus patient (me!) to share their experience of chronic illness. I will post parts of that talk as the days go on.

Please don’t decide for us what we should or should not know. We have to know. What we do with that information is up to us. Do I want to hear that lupus will ultimately kill me by uncontrolled infection, cardiovascular event or kidney failure? Heck no! But I can tell you, if I get sick I don’t wait. I call the doctor. I eat a low, low fat diet. I work out and do cardio four or five days a week. I keep my appointments and have my 24 hour urine test faithfully every three months. An informed patient is a compliant patient. I understand that you don’t want to overwhelm or scare us. We aren’t children. We deserve to know. Yesterday I sat in the luncheon as we listened to treatments for RA. I can’t tell you how emotionally painful that was for me. But I stayed and I learned.

Wednesday, July 30, 2008

Ask for What You Need

Ask for what you need. Give others the gift of allowing them to help. The first week home after a 14 day hospitalization, my oldest son and his wife stayed with me during the day. Weak and frail, I spent my time on the couch or in the bed. The next week my youngest son and his girlfriend took their turn babysitting me. While I was afraid to be alone, I didn’t really want them there all the time. I was afraid of losing my independence, but I never said a word. The kids had no idea what to do for me. They felt as helpless as I was. The first week, my babysitters made sure I was fed and comfortable and then they rearranged my kitchen cupboards. They didn’t know what else to do. At least they weren’t sitting there looking at me with pity and fear and I kept quiet. The next pair of babysitters made sure I was fed and comfortable and THEY re-rearranged my cupboards for the same reason, and I kept silent for the same reason. When they finally left me to my own devices, I couldn’t find a thing!

When I got sick as a child, my mother would sit beside my bed and stroke my forehead ever so gently. Her touch was soothing, her quiet voice reassuring and calming. When she was beside me and everything was going to be OK. I desperately wanted someone to do that for me. The one thing I really needed and wanted was someone who loved me, stroking my forehead, and just being there. No words were needed and certainly no cupboard cleaning. But I didn’t tell them. I didn’t get what I needed. But there is another side to this. My family wanted to help. I was silent about my needs, so they guessed. I ended up resenting the fact that my “stuff” was not where I could find it. Even worse, I robbed them of a chance to help me. When we don’t say what we need, we aren’t being noble and considerate, we are denying others the chance to show their love. What do you truly need? Will you give others the gift of helping you?

Monday, July 28, 2008

The Blame Game

It’s my fault. If it’s not my fault it has to be somebody’s. Maybe it’s genetic. We rack our brains searching for a family member who gave us the faulty genes. Are we just plain defective? Did our parents do drugs or drink or smoke? Were they exposed to radiation or toxic chemicals? Then we question ourselves. Did I exercise enough? Did I exercise too much? Did I eat junk food? Did I abuse my body? Did I get enough sleep? Did I allow stress to get the better of me? Could I have done better? Is this payback for not caring enough about my health? Maybe it’s something around us: pollution, genetically modified crops, pesticides, drinking water, fluoride, vaccinations, radiation, the hole in the ozone layer. You name it, you can blame it. There has to be a reason and we won’t rest until we find it.

The fact is we have chronic illness. It would be nice to know what caused it. The causes are elusive at best. Even if we did something to bring on the illness, we can’t change the past. All the blame and guilt in the world can’t do that. Suppose the cause is genetic or environmental. How does that change what’s happening to you right now? Suppose you actually contributed to the onset of your illness. That won’t change your current condition either. But it will saddle you with a load of guilt. That guilt will make you feel even worse. All the blaming in the world will not make anyone better. Stop playing the blame game. Harness that energy to actively manage your disease and have the very best life possible!

Saturday, July 26, 2008


How many times have we taken a nice, fresh sheet of paper and written “TO DO” across the top? We start with things that simply have to get done. And the list grows. Pretty soon it includes every single unfinished thing in our lives. Organize the sock drawer? Write it down. Untangle the Christmas lights even though it’s June? Write that down too. Oh and don’t forget to alphabetize the spices! List making is not unique to sick people, everyone does it. The trouble comes when we make lists based on what the healthy self could accomplish. Our inner list maker is out of touch with the body. It’s downright unrealistic. The list becomes an exercise in futility. We start, but pain or fatigue or confusion stops us dead in our tracks. Or we don’t start at all. Just looking at the list is enough to immobilize us. Now what happens? We failed. String a bunch of failures together and our already damaged self esteem takes a nose dive. Why bother trying at all? Go back to bed or watch TV. It’s no use anyway.

An African priest told me that your list for the day should be no longer than your wrist is wide. That’s probably five or six things. Keep the list short and then shorten it some more. Can something wait? Take it off. Can someone else do it? Ask them and take it off your list. Take off everything that falls into the category of it-would-be-so-nice-if…the spices were alphabetized. Start the one most important thing on your list. Applaud yourself for starting. Can you take another step? Good! Or try a different approach altogether. Instead of a TO DO list, keep a DONE list. Start with your blank piece of paper and write down each thing as you complete it and I do mean EVERYTHING. Got out of bed, showered, made breakfast, brushed teeth, dressed, opened mail, threw out junk mail, and so on. Look back over your list from time to time during the day. See just how much you have accomplished and be proud. Lists make good servants, but terrible masters.

Friday, July 25, 2008

Human Being/Human Doing

I am a human being, not a human doing. I have value because I exist, not because of what I do. We define ourselves by what we do. We also define ourselves by our relationships to other people. Chronic illness strips us of what we do. Chronic illness strips of who we were in relationships. In our nakedness we might just discover that we are human beings and that just being is just fine.

Thursday, July 24, 2008

Don't Stress? You've Got to Be Kidding Me!

Exactly how is someone telling us not to stress out supposed to help? Is there a switch somewhere that we don’t know about? We are staring in the face of some really frightening stuff here: loss of independence, identity, jobs, health, freedoms, hopes, dreams. The future is uncertain at best. But don’t stress? And don’t they think we know that we are stressed? The fact that others tell us not to stress implies that we are too stupid to know we are stressed and too stupid to know stress makes disease worse. Kick us when we’re down!

My own doctor said these very words to me. The short list of what was going on at the time was kidney biopsy, going on chemo, no job, no insurance, eviction notice on door, no hope of working and a nasty divorce going on. Don’t stress? Yeah, right! I clenched my teeth and sat on my hands, trying not to bite his head clean off or throttle him on the spot. Of course we don’t enjoy the stressful state. But it would be really nice if just one of these healthy folks who tell us not to stress would tell us HOW!

Here is one way. Set aside 20 minutes where you can be alone and uninterrupted. Wear comfortable clothing. Think about a word or phrase that brings a smile to your face. Words like peace, serenity, joy, tranquility, or whatever you like. Or pick a phrase from your own spiritual tradition. Sit quietly. Close your eyes. Notice the sensations of breathing-the cool air entering your nostrils, your lungs filling and emptying, notice everything. With each breath, think the word or phrase you have chosen. Let go of everything else. Other thoughts will come into your mind. Just notice them and think, “Ooo there goes a thought.” Let it go and return to breathing and your word or phrase. At the end of 20 minutes or so, open your eyes and slowly begin to move your body a little. You will be amazed at how calm, refreshed, and unstressed you feel!

Wednesday, July 23, 2008

Suffering Is Inevitable, Misery Is Optional

The first noble truth of Buddhism is that life means suffering. No one makes it through life without suffering. We can see that for ourselves. Some people experience a change, crisis or health issue as a reason to live their entire lives mired in misery. They complain loud and long to anyone who will listen, and even to those who don’t. Chronic complaining becomes a substitute for action. Chronic complaining keeps them in a victim mind set.

Others accept that there are things in this life that are beyond their control. These people know how to cope. They know that although they can’t control what happens to them, they can control their reaction to whatever comes their way. I have a friend who went for a routine checkup only to find out that he needed coronary bypass surgery. After the initial shock, he made a decision to be the very best heart patient that doctor ever had.

Complainer or coper? The choice is ours!

Tuesday, July 22, 2008

All or Nothing

On bad days, we think, “Why bother? What difference will it make anyway? Who cares? I don’t! It’s useless. I don’t know what to do anyway!” We end up feeling like failures because we didn’t do anything to make changes in our lives.

On good days we make elaborate plans for how we are going to improve our overall health. We plan exercise regimens, new diets, vitamins, etc. Maybe the plans are unrealistic for where we are right now. Or maybe we don’t define what we are trying to do. I’m going to eat better is very different from saying I’m going to eat 5 fruits and vegetables a day every day this week. Or we don’t calculate all the steps it will take to get from here to there. We end up feeling like failures because we didn’t fulfill our plans.

Success is midway between all or nothing. Suppose you want to exercise. What will you do? How long? How often? What do you need in order to accomplish your goal? What is a goal that you KNOW you can achieve? The first week, walk for two and a half minutes, then turn around and come back. Do that three days out of seven. If you want to do more, fine. By keeping the goals measurable and achievable, you will start having success. Each success will restore confidence and give you the desire to work toward the next goal. What step will you take towards your goal today?

Monday, July 21, 2008

Is Anybody Listening? I've Been Wronged!

Victims of crime have their power taken away. Not only do the victims feel violated, they also feel ashamed. Why? Harold Kushner describes it this way, “The shame they felt was the shame of powerlessness, the inability to protect the integrity of their own bodies.” (Living a Life that Matters). As part of the healing process they need people to “acknowledge that what happened to them was wrong.” Only then is the burden of shame lifted from the victim and placed squarely on the perpetrator.

Being a victim of chronic illness is very much like being a victim of a crime. Our power is taken away, at least for a while. We feel violated and we also feel ashamed. The integrity of our bodies has been compromised. We have little control. But people are not as likely to listen to how we have been wronged by disease. In fact, many will secretly and not so secretly blame us! In cases of diseases where the cause is not understood, the blame increases. We need to be heard and acknowledged. Only then can we put the burden of shame down and begin the process of healing.

Sunday, July 20, 2008

Everyone's an Expert

Isn’t it amazing how when you have a chronic disease, everyone becomes a medical expert? Why don’t you try herbs, vitamins, magical tropical juices (which only make the pyramid scheme sales people rich), more rest, less rest, more exercise, less exercise, a raw foods diet, the maker’s diet, giving up meat, eating more meat, juicing, a different climate, more sun, less sun, positive thinking, not stressing, and on and on. A total stranger in a discount house tried to persuade me that a “special juice” would cure my disease, after all, there was a story about it on Yahoo! No kidding.

Reality check: Would so many millions be allocated to research if the cure was that simple? Don’t you think the researchers might just have checked out some of these theories? Would so many people be sick and suffering if these proposed cures really worked? And just why are we supposed to think of all medical people as the enemy? The disease is the enemy, not those who treat us. It makes sense to eat a balanced diet and it makes sense to take the best care of ourselves that we can. But to expect a miracle cure in the latest fad is senseless. But Redd Foxx sums it up better than I ever could, “All those health food nuts are going to feel mighty foolish when they’re lying there in the hospital dying of nothing.”

Saturday, July 19, 2008

I Know Why You're Sick

Isn’t it interesting (and very annoying) to hear people’s explanations of why we are sick and they are not? Most of them seem to give cosmic significance to our illness. Here are a few of my favorites. God is testing you. There must be a lesson you are supposed to learn. Your illness is a gift. Your illness is a blessing in disguise. What doesn’t kill you only makes you stronger. If you had only exercised more, eaten better, stressed less…you wouldn’t have gotten sick. People actually have the audacity to say these things!

A friend was with me when I was taken to the emergency room with pericarditis, pleurisy and pleural effusions, bone marrow failure, thrombocytopenic anemia and beginning renal failure. As I lay on the gurney, struggling to breathe, she said, “See, you should have stopped smoking.” Well, yes, she was right. But my problems were caused by my immune system attacking my own healthy body parts. (And it should be noted that smoking worsens autoimmune disease, especially lupus!) It was her way of making sense out of what was happening. By the way, I was less than gracious.

Our sickness doesn’t make sense to them. Our presence in their lives reminds them that they are also vulnerable. It could happen to them, too! So people construct a chronic illness theory. It’s a theory, not a fact. The theory helps them feel safe, somehow above getting sick. I admit, there are times when I challenge these statements and not too politely. But, realizing what motivates people to say these things, I am able to let it pass.

Friday, July 18, 2008

Go Away, You Bother Me

Isolating our selves is easy. We have a hard time keeping up with the “healthies.” We don’t feel like we fit in their world anymore. Being with them is like observing people through a window. We see what’s going on, but we are on the outside looking in. We can’t connect. “Hey, it’s me, I’m out here and I’m miserable, don’t you notice?” We don’t want to talk about our disease and we don’t know how NOT to talk about it. We used to have things to talk about when we were out there in the land of the healthies. Now all we bring to the conversation is our aches and pains, lab tests and meds.

Rather than face the ordeal, we isolate ourselves. And without the regular daily give-and-take of interaction with others we draw more deeply into ourselves. We have time to think, indeed too much time to think. We make mountains out of mole hills. We become suspicious of others. What are they thinking and saying about us? We become depressed. Nobody cares. We nurse resentments. We become anxious about every little thing. In isolation we can have our own pity party without anyone else there to provide a reality check. The longer we stay in this place, the longer we want to stay there. And the longer we stay there, the less people will want to be around us.

What to do? First, be aware of ways you isolate yourself. Second, make a goal of reaching out to just one person each day and of having a conversation about something other than your illness. Call someone and chat for just five minutes. Ask how THEY are feeling. Really listen to the other person. You have to power to go up or down. May you choose up!

Thursday, July 17, 2008

Why Comply?

This morning I was reading Living a Life That Matters by Harold Kushner. I was reading to pass the time on the dreaded “Oompa Loompa Machine,” but more about that tomorrow. Kushner mentioned Lawrence Kohlberg’s “three stages of moral development: doing right out of fear of punishment, doing right out of a feeling of communal solidarity with others, and doing right because it is right. I believe this has implications about how and whether we comply with our treatment plans.

There is one rheumatologist in my city who terrifies patients into compliance. He tells them they have stage four lupus (there are no stages in lupus) and that if they don’t take the medicine they will DIE! I know a rheumatologist who will not renew a patient’s prescription for hydroxychloroquine or plaquenil (a maintenance immunosuppressive that most lupus patients take for life) unless they produce the results of their annual eye exam. That’s not punishment. It’s more of a strong nudge because she cares. Most of the people in my lupus support group take their hydroxychloroquine without much concern. There is a kind of camaraderie about shared minor and major annoyances caused by lupus. But we take our meds knowing we are all in the same boat. This solidarity makes it easier for new patients to take their meds too.

But if you take away the threatening doctor, the nudging doctor, or the camaraderie of the group some patients will slip up. The bottom line has to be that we follow our treatment regimen because we know it is the right thing to do to control our disease.

Wednesday, July 16, 2008

I Can't Believe I Ate the Whole Thing!

I love cheesecake-rich, creamy, heavy, moist New York cheesecake. In fact, I could eat a whole cheesecake in a day. When I was a scraggly 114 pounds I did just that! After all, I deserved it! I felt miserable, had endured so much, was tired, was skinny, lost my jobs, didn’t know how I was going to survive (ya da ya da ya da) that I had an inalienable right to indulge in some kind of pleasure and decadence. I deserved cheesecake! Right? Wrong!

We don’t have to, in fact we shouldn’t, deny ourselves little pleasures and comforts. But if our ultimate goal is to feel better, then eating the “whole thing” probably won’t contribute much. Eat mindfully, not emotionally. Are you eating because you are hungry? Are you eating to savor the flavor of every morsel? Or are you eating out of depression, sadness, anger, or some other feeling?

(I wonder how many apples you would have to eat in a day to equal the calories in an entire New York cheesecake?)

Tuesday, July 15, 2008

What Do You Need?

We can’t get what we need if we don’t say what we need. We can’t say what we need if we don’t know what we need. Why don’t we know what we need? It’s not as simple as it sounds. Stop reading for just a minute and ask yourself what you need. Did you stop? Now take a look at the “what I needs.” Some things are not possible right now, like a cure. Some things will be what other people think you need. Our self-esteem can be so damaged by chronic illness that we actually believe others know what we need better than we do! Sometimes we don’t think we deserve what we need so we certainly don’t deserve to ask for it. Or maybe we have adopted the stereotype of the silent suffering sick one. Then again, we might have learned not to say what we need in our families. Or we think others will not approve of our needs. My bet is, that it’s “all of the above” in varying degrees!

Find a private place, take an hour for yourself, and write about your needs. Consider these questions taken from the January 3 reading in The Language of Letting Go by Melodie Beattie (one of my all time favorite books), “What do we need to do to take care of ourselves?...What do you want? Need? What don’t you want and need? What do you like? What would feel good?” Then you are ready to ask.

Monday, July 14, 2008

A Child in Your Bed

“What you need is a child in your bed,” said Monsignor Ndeukoya. I stared blankly. Not wanting to be rude and too tired to argue, I remained silent. I was at my worst then, too weak to even stand and shower. The last thing I could imagine wanting was a child in my bed. He looked at me intently. “You see, you Americans are so isolated, so disconnected from your family. The generations aren’t together. Look at you. Your family is in this city, but you live alone. Your grandchildren connect you to life.” Monsignor was from Moshi, Tanzania, on Mt. Kilimanjaro.

As much as I tried to dismiss what he said, I couldn’t. Here I was fighting as hard as I could to remain independent. But that night, as I went to sleep, I thought of my one year old first grand child. I went and found my teddy bear and slept thinking of her. Maybe he was right.

Tonight, as I write, both my grandchildren are here-still awake and yes, they are in my bed! And Monsignor’s words came back. We don’t have to have a child in our bed, but it helps to have one in our lives. If you don’t have one, borrow one, even if it’s only for an hour. Let yourself see through their eyes. Sing silly songs. Laugh. We sang “Cheeseburger in Paradise” over and over, and each time the 4 year old change the words and we roared! “Cheese burger and pair of mice!” Crunchy! Monsignor was right.

Sunday, July 13, 2008

First Day, Last Day

If today was the very first day that you were alive or the very last day that you would have on this earth, what would that be like? What would you do? What would it be like to taste chocolate for the first time, or the last? What would it be like to smell a flower, look in the face of someone who loves you, feel the breeze or the sun on your skin? Would you savor each experience? Would you drink in every detail? Are you living each day that way? Can you?

Today IS the first day and today could be the last day for every person on the planet. No one knows who will be here tomorrow and who will not. Make each moment, each experience a first and possible last. Then there will be no regrets.

(Friday morning, my neighbor Pat lost her battle with lupus nephritis. May she rest in peace and may light perpetual shine upon her.)

Saturday, July 12, 2008

Get Out of Your Mind, Get Out of Your Head!

We spend a lot of time thinking and a lot of time worrying. Each new symptom leaves us wondering if we are getting worse. We do this sort of body scan, where we are constantly on the alert for something else going wrong. Then we worry. We worry about now. We worry about the future. The “worry tape” loops continuously…what if…could it be…it’s worse…there’s no hope…how will I ever…etc.

We feel like we’re going out of our minds. The problem is not that we are going out of our minds; it’s that we are stuck up there. We are living inside our own heads. The solution is to get out of your mind and back into the here and now, the real world. Easier said than done, you say! The first step is awareness. Observe that chatter going on inside your head. The second step is to stop the tape. Read a book, watch a funny movie, call a friend and talk about anything BUT your illness, eat something and really observe the taste and texture. Distract yourself. The third step is to replace the tape. Write down positive substitutes for the negative things you have been telling yourself. Tape them to your mirror and around your home. I am glad to be alive. I am lovable. I am a proactive patient. Whatever works for you. Or try this; put a little adhesive dot on your watch or clock. When you check the time, the dot is a reminder to repeat one of your positive statements.

Friday, July 11, 2008

People Say the Darndest Things: Everyone Gets Sick, Everyone Gets Tired

I think it is a misguided effort to help us not feel so bad when people tell us, “Everybody gets sick,” or “Everybody gets tired.” If they are trying to make us feel included in “everybody” that’s nice. It doesn’t work, but it’s a nice try. Sometimes, I really want to respond with a snappy, “Really? Wow! I had no idea! Thanks for cluing me in.” But that’s rude. (When I am on steroids, I will most likely say it anyway-‘roid rage, you know.) Other times, I want to take a more educational approach. “Yes, everybody gets sick but YOU get better and I don’t.” Or, “This kind of tired is like when you worked all day, stayed up all night, and worked all day the next day. It’s bone crushing fatigue and a burning brain.” It doesn’t do much good. The folks who live in the land of the healthy just can’t get it. What we experience is not your average sickness or your average fatigue. The sickness is not cured by medication and the fatigue is not relieved by rest.

Here is the problem. They make a casual remark. What we hear is a judgment. We SHOULD stop complaining, suck it up, realize that this is the human condition, put on our big girl/big boy panties and get over it. There is not much you can do to change their perception. But you can change yours. Remind yourself that your experience of chronic illness is your experience, no one else’s. Other people don’t have to understand it. And you don’t have to educate them or kill them!

Thursday, July 10, 2008

Turn the Tables

I had lunch today with a delightful young man who has cerebral palsy. He works with the disabled community in Portland, Oregon. He told me about a young woman recently diagnosed with multiple sclerosis. She was planning to have her boyfriend move out and determined not to live back with her parents. Why? She didn’t want to be a burden on anyone.

When we impose isolation on ourselves and when we refuse to let people do anything for us, we think we are noble. We are bearing our suffering stoically and alone. The people who love us should go on about their lives. After all, we are a millstone tied around their necks. This is an excuse! We don’t want people to help because their help is a reminder of what we can’t do. We don’t want people be around us because we can barely stand to be around ourselves. We don’t want people to care because we feel unlovable and unworthy of their care.

Let’s turn the scenario around. What if you were the healthy person and someone you loved had your condition? What would you want to do for them? Now, think about how you would feel if your offers for companionship, help, and just being present were categorically rejected by that sick person you love? We can and should do what we are able to do for ourselves. The kind of help that makes us dependent when we don’t need to be is not good help. But to deny help when we need it, to deny love and companionship when it is freely offered is downright selfish.

The next time you find yourself in this situation, turn the tables. Pretend you are well and the other person is sick. You will know what is right.

Wednesday, July 9, 2008

Health Insurance: Chronic Illness and Disability

On July 10, 2008 I have the privilege of speaking at a National Health Council public forum in Orlando. The opening and closing paragraphs are today’s post.

A society is judged by how it treats those who are most vulnerable. There are those who pride themselves on being the voice of people like Terri Schiavo, unable to make decisions about their own care. There are those who pride themselves on being the voice of the unborn, defending their right to life. But where are the voices of the concerned citizens of this country and where are the voices of our political leaders when it comes to defending chronically ill or disabled people who cannot access even the most basic medical care because they are denied or can’t afford health insurance?

I am here speaking today, crying out on behalf of over 100 million of my brothers and sisters, who like me, have a chronic disease or disability. When you deny us health care, you are removing our feeding tubes. When you deny us health care, you are aborting our lives. Our founding fathers said it much more eloquently in the Declaration of Independence, “We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the Pursuit of Happiness.” Health care is a right, not a privilege for the healthy and wealthy. The right to life belongs to all people, not just those on life support or those still in the womb. Health care is the key to life. Today, we ask our leaders in government to guarantee the right to life to all our citizens by fixing the system. Our hope, indeed our very lives rest in what you do. Thank you.

Tuesday, July 8, 2008

Medication: Blessing or Burden?

Every time we take a pill or refill a prescription, we are reminded that we are sick. Even if we are symptom free for a while, that pill reminds us about what lies just under the surface. Is it any wonder that people often “forget” to take their medication?

Try this. Learn what each medication does to control your disease. Then as you take your meds, think about the good things they do for you. This is not the time to think about side effects. All medications are a matter of risk versus benefit. Right now we are focusing on the benefits and ONLY the benefits. Rather than resenting the medication, give thanks for it. Say to yourself, “This medication helps me by_____. I am thankful that I live in a time and place where my disease is treated and medications are available.” Let your medication be a blessing.

Monday, July 7, 2008

God Doesn't Give Us More Than We Can Handle

What on earth prompts people to say such stuff? I could write a book! Wait, Harold Kushner already did, it’s called When Bad Things Happen to Good People. I recommend it highly! Back to the task at hand. First of all, most people say this without thinking. Or they don’t know what to say but feel like they have to say something. Or they can’t make sense out of what is happening, and this is their lame attempt. They have heard it during hard times and so think this is what you say. Second, it assumes that God “gives” us chronic illness. And under that assumption is another one; we are all supposed to have perfect lives but sometimes God sends crap our way. Third, they ignore the fact that our ‘civilized’ life style, complete with toxins, pollutants, pesticides, processed food, stress, sedentary lifestyles etc… might just have something to do with the whole mess. I am not saying that illness is punishment for civilization. I am simply pointing out that there could be a connection between our very unnatural lives and illness. “God doesn’t give us more than we can handle” is easy to say when you are healthy.

People are going to say things like this. They always seem to say it when we are feeling most vulnerable. We can’t control what they say, but we can control our reaction to it. Honestly, I have literally threatened to bite people who say this. A better choice is to prepare your reaction and response ahead of time. The response is very individualized. These days, my response is a lovely (false) smile accompanied by, “Thank you,” and a change of subject. What will your response be?

Sunday, July 6, 2008

Twenty Questions

Forty plus years ago, I was on a retreat. We had a partner exercise. One partner asked the other the same question twenty times in a row. The other partner had to give a different answer each time. Then the two switched. The question? Who are you? Here are my answers today:

1. Linda
2. A person
3. A woman
4. A mother
5. A friend
6. A musician
7. A helper
8. A teacher
9. A writer
10. A grandmother
11. Someone who laughs
12. Someone who loves
13. Someone who plays
14. Someone who brings about change
15. Outspoken
16. Someone who prays
17. A brave person
18. A risk taker
19. A daughter
20. Someone who happens to have lupus

In the late 60’s I could come up with less than 10 answers before I stalled out. I was in my teens then. In 2003, I would have had only one answer. I have lupus with major organ involvement. That is who I was. In July of 2008, I have twenty answers and could go on for quite a few more.

Who are you? Take a piece of paper and answer the question twenty times. What does your list reveal about who you think you are today?

Saturday, July 5, 2008

At the Movies: Monty Python's Holy Grail

The setting is Medieval England during one of the great plagues. A couple of peasants walk through the village. They are pushing a wheelbarrow piled high with those who died from the plague. As they walk they call out, “Bring out your dead! Bring out your dead!” A man is tossed on top of the pile of bodies. He lifts his head and exclaims, “Wait, I’m not dead yet!”

Our hopes and dreams for the future seem gone. Things we used to do seem gone. Our loftiest aspiration these days is to manage a shower and remember to take our meds. Have you tossed yourself on the pile? Have you given yourself up for dead? Or will you cry out, “Wait, I’m not dead yet?” And here is the most amazing thing; the empty places left as a result of chronic illness create space so we can see clearly things we never considered before. I’m not dead yet, are you?

Friday, July 4, 2008

Independence Day

What if I lose my independence? What if I have to move in with my adult kids or my parents? What if no one will care for me? What if they put me in a nursing home? What if I become homeless? What if I lose my mind? What if I die alone? We catastrophize. We imagine the worst. We relive these “what if” scenarios in our imagination, embellishing them each time.

Reality check. Anybody on the planet, including the healthy folks, could become incapacitated at any time by accident or catastrophic health event. The difference is this; our chronic illness invites us to think about it more often. You can change the future by worrying. Here’s how. First, the stress of worrying will make your overall health worse. Second, when you do get to the future, you will get to regret wasting this valuable time worrying.

When you catastrophize, ask yourself what evidence you have. Check in with another person. Take action if you can. Then be about the business of living right now.

Thursday, July 3, 2008

Cure or Healing?

We hope and pray for a cure. We explore alternative therapies. We surf the web and hit the library. We latch on to any tidbit we hear in the evening news that gives even the smallest ray of hope. We want our health back. We want to be healthy “like everybody else.” And we put our lives on hold while waiting for the cure.

Healing is different. Anyone can have it. You can have your disease and be healed at the same time. We are healed when we experience all the raw and painful emotions and let them go. We have a disease and decide to have a life too. Healing empowers us to take responsibility for our health, to value each person and each minute, and to treasure everything we have. Do we still hope and pray for a cure? You bet we do! But we make the most of our lives in the meantime.

Offered a choice between cure or healing, I’ll take healing every time!

Serenity Prayer
God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.

Wednesday, July 2, 2008

The Friendship Ring

I have a ring that’s very special. It has my birthstone-a garnet. I bought the ring about two years after my diagnosis. I was still pretty sick, still on disability. The ring was only $30 but that was an extravagance for someone who was barely surviving. When I tried it on, I had an “ah-ha” moment.

The ring is a symbol. Every morning after my shower, I put the ring on. This is my daily renewal of my commitment to put my health first, to live the best life possible with this disease, and to make choices that build health rather than tear it down. I wear it on my right hand, my dominant hand. Every time I use that hand, I see the ring and remember.

What commitment will you make to yourself today?

Tuesday, July 1, 2008

Love Your Neighbor as Yourself

Before you can love your neighbor as yourself, you have to love YOU. You are not your illness, but it is part of who you are. Do you treat yourself with love? Or do you treat yourself like someone who deserves to be punished? If someone you really cared about had your disease, what would you expect of them? Is that what you expect of yourself? How would you treat them? Is that how you treat yourself? What would you say to them? What do you say to yourself?

Every day presents you with hundreds of choices. Some build health, some do not. For just one day, every time you are faced with a choice, pause and say to yourself, “I love myself therefore I choose…” You don’t have to believe it. Just do it. How do you feel at the end of the day? How will you feel at the end of a week?

Monday, June 30, 2008

Feeling Alone

Chronic illness isolates. Who wants to hang out and have fun when taking a shower uses up half our energy for the whole day? Chances are we would be a wet blanket anyway. What if we have to go home or nap or get to a bathroom really fast? If we say yes on Tuesday, we may just have to cancel on Thursday. Chronic illness is not a respecter of calendars and appointment books.

But there is another kind of isolation. You know it by this intense, stabbing feeling of aloneness. You don’t fit. Life is going on and you are on hold. You wish just one person could really be there with you, understand your experience, and feel your pain. And no matter how nice they are, the healthy folks just don’t get what it’s like to be you. You feel cut off, isolated, terribly alone.

Time for a reality check. You are the only one who can feel what you are feeling. They are the only ones who can feel what they are feeling. We can care for each other, but we cannot feel for the other. We can stand together in the stream of one another’s pain, but not take the pain from each other. When you change your expectations, you may find that someone has been standing with you the whole time!

Sunday, June 29, 2008

Everyday Blessings

When we are in pain or afraid, it’s darn near impossible to give thanks for anything. But humor me for a minute, you have nothing to lose. As you go through the day be aware of all the people and things you encounter and find something about each for which you can be thankful. Wake up: give thanks for a bed, sheets, pillow, roof over your head, walls around you, floor underneath you and all the people who made those things. Bathroom: give thanks for running water, toilets, hot water, sinks, showers, towels, and toilet paper. Have breakfast: give thanks for food and the people who grow it, cups, dishes, silverware, refrigerators and stoves and the people who work in power plants. The possibilities are endless. What are your everyday blessings?

Saturday, June 28, 2008

When Positive Thinking Is Not the Answer

“Just think positive, and you will be OK.” Well, yes and no! Positive thinking has a very important role in chronic illness-but more about that another time. When “positive thinking” means ignoring the emotional pain of a diagnosis of chronic illness, when “positive thinking” means ignoring the pain of grieving for the losses in your life and hopes and dreams, when “positive thinking” means denying what you feel then it’s not a good thing at all.

Feelings buried alive don’t die. The only way out is to go through the pain. And on the other side of the pain is the place where positive thinking lives.

Friday, June 27, 2008

Being Sick Like a Child

What happened when you got sick as a child? How did the adults in your life react when you got the chicken pox or strep throat, a cold or an ear infection, a broken bone or a stomach ache? What did you learn about being sick? Did people fawn over you, acting like you were a fragile piece of China that might break? Did they act like your sickness was an annoyance and an inconvenience to everyone? Did they make you keep pushing even when you were sick? Were you believed? Where you told it was all in your head? Were you blamed for getting sick? What did you learn about being sick?

Now think about being an adult with a chronic illness. Which reactions are the same? Are you expecting the adults in your life now to act like the adults did then? How is this impacting your relationship with lovers, family, friends, and yes, even your doctor? Is it time to learn to be sick like an adult? We get to chose.

Thursday, June 26, 2008

Why Me?

Why me? Why now? There is so much I haven’t done yet. Is this the beginning of the end? I’m not ready. What did I do to deserve this disease? I must be a bad person. This must be a punishment. Did I cause this disease? If only I had exercised more, eaten better, stopped stressing ya da ya da ya da. Will I lose my independence? My mind? My life? My hopes and dreams?

Why not me? Why not now? Are there things I can still do? Am I still breathing and thinking and reading? Is anyone ever ready to have a chronic illness? Can all this wondering, worrying and blaming change what’s happening right this very second?

People get sick and people die. We all know that. We just have a hard time believing it will happen to us. Every second we spend trying to answer these questions is a second we have lost in the present moment. Every ounce of energy we use pondering these questions is an ounce of energy we could have used to learn to manage our disease. Yesterday is a cancelled check. Tomorrow is a promissory note. Today (and this minute) is cash in hand. Spend it wisely.

Wednesday, June 25, 2008

When Denial Is a Good Thing

The accusation, “You’re in denial,” hurts when it’s true. The accuser hopes we will be shocked into reality. We don’t hear the accuser’s care and concern for us. No! We hear judgment. Not only are we sick, but we are weak personalities who can’t even face the diagnosis. We need another person to make us face the music. The implication is that denial is a very, very bad thing and that we are very, very bad for being in denial for even the shortest time.

Denial protects us from facing what is too horrible to think about all at once. That’s OK, in fact, it’s a good thing-as long as we don’t stay there forever!

Tuesday, June 24, 2008

Stranger in a Strange Land

“Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick. Although we prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” (Susan Sontag in Illness as Metaphor.)

Chronic illness picks us up, plops us down in the kingdom of the sick and locks the gate behind us. We might just as well have been transported to a village in Tibet or the jungles of Africa. We have to learn a new language. It took me forever to learn to spell and pronounce systemic lupus erythematosus, mycophenolate mofetil and pancytopenic anemia. And there are shorthand terms to learn like CBC, CMP, sed rate, ANA, and on and on. That’s not all! There is a brand new culture, the culture of medical providers. All the things we know about how two people interact are out the door.

Immigrants who succeed learn the language, the culture and how members of society interact. If they can do it, so can we!

Monday, June 23, 2008

The Symptom Journal

“White coat syndrome” can leave you stumbling over your words and cause you to forget the important things you wanted to tell and ask the doctor. What to do? Keep a symptom journal. A few days before your appointment, read through your journal looking for patterns. Write that summary down and bring two copies to your appointment-one for you and one for the doctor.

What should you write in your journal? Keep track of when you take your meds, any unusual reactions, changes in routine or diet, and your symptoms. In your summary be sure to cover these points:

  • When did you first notice the symptom?
  • How long does the symptom usually last?
  • How often have you experienced this symptom since your last appointment
  • What makes it worse?
  • What makes it better?
  • Does the symptom prevent you from completing activities of daily living? In what way(s)?
  • Rate the severity of the symptom on a scale of 1 to 10. (10 being the worst.)
  • Describe the symptom as clearly as you can. For example, if you have pain describe it as sharp, dull, throbbing, shooting, stabbing, running down your arm, cramping, etc.

The doctor will not read your whole journal! Your work as a patient is to report symptoms clearly, concisely, and accurately. The doctor’s work is to pay attention to those symptoms and use that information in diagnosis and treatment. It’s all about team work!

Sunday, June 22, 2008

I Finally Know What It Is!

If you had been suffering from symptoms for a long time, you were probably relieved when you get a diagnosis. It’s an “A-ha” moment. Your problem finally has a name. And if you, like most of us, doubted at times that you were really sick, now you have validation. And for all those who doubted you, you have vindication.

The time of wondering and self-doubt is over and you are ready to get to work and fix this thing-not so fast. First of all, there is no cure. The treatment plan is aimed at slowing or preventing permanent damage and easing the symptoms, not eliminating the disease. Then you find out that there is no simple formula for your treatment. One person improves on this medication and another gets worse. The flush of relief at the diagnosis quickly turns into uncertainty and frustration.

This is the time to resolve to establish a good relationship with your medical providers. Keep a journal of your symptoms to help your doctor evaluate the effectiveness of treatment. Learn to be specific when you talk to the doctors, and expect the doctor to answer your three most important questions at each visit.

Saturday, June 21, 2008

Get Well Soon

If you break your leg or have your appendix out there are little niceties and social rituals that people do. They send flowers and cards telling you to get well soon. When you first come home from the hospital, they offer to bring food or help you out. They ask if you are getting better, and you probably are. After all, we expect people to get better once they receive the right treatment.

Just maybe, if your diagnosis with a chronic illness was dramatic enough, you will get cards, flowers, visits and well wishes. But if your diagnosis was not dramatic, there will be no social rituals. Your life has changed dramatically. Yet, many of the people you know will hardly notice. Some will acknowledge your illness and go right on with their lives. A few may offer to help at the beginning. Some will ask if you are getting better. After a while, you may find yourself saying yes either because you are tired of the question or don’t want folks to think you are a hypochondriac, lazy or crazy.

The whole word doesn’t have to know about the details of your medical condition. Most people don’t need to know at all. Explain it to the people who really care about you, but don’t make it the center of every conversation. And always remember, you are not our illness.

Friday, June 20, 2008

Acute versus Chronic Illness

People get sick. If they don’t get better on their own, they go to a doctor. Diagnosis is not too difficult. Treatment is ordered and the patient recovers, or in some cases, dies. Chronic illness can start slowly and take years to diagnose. Chronic illness does not go away on its own, in fact, it never goes away. Chronic illness may not be a death sentence, but it sure is a life sentence!

If the bad news is a life sentence with our illness, what’s the good news? The good news is that we can control our reaction to the illness. The good news is that we can create a new normal for ourselves. We don’t have to be our illness. Norman Cousins sums it up in these words, “Never deny a diagnosis, but do deny the negative verdict that might go with it.”