Boundaries

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)

Anger

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.

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.)

Hell

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.

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.

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.

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.

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.)

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.