Book Excerpt: DIAGNOSIS: LUPUS: THE INTIMATE JOURNAL OF A LUPUS PATIENT by Marilyn Celeste Morris

Author: Marilyn Celeste Morris
Website: www.freewebs.com/marilyncmorris/
Title of Book: Diagnosis: Lupus: The Intimate Journal of a Lupus Patient
Publisher: Publish America

DIAGNOSIS: LUPUS: THE INTIMATE JOURNAL OF A LUPUS PATIENT

Foreword

Entries from my journal detail my personal struggle for diagnosis and treatment of Systemic Lupus Erythematosus (Lupus) from the first symptoms in 1982, diagnosis in 1988, to my current, thank God, state of remission. Please note that I have changed the names of my doctors, hospitals, and other data to protect their identities. .

My purpose is to inform, in non-clinical language, newly-diagnosed, yet-to-be diagnosed patients and their families; give them courage to continue seeking a diagnosis in the face of frustration and feelings of despair; and offer hope, even when conditions seem hopeless.

By relating my innermost thoughts and feelings, I hope readers will come to realize they are not alone in their frustration, depression, job losses and subsequent loss of income, battles with an Alphabet Soup of public assistance services, Social Security Disability; food stamps and weight gain. Nobody wants the inevitable weight gain and subsequent loss of self-esteem that comes with the taking of steroids, but “you pays your money and you takes your choice.” Personally, I’d rather be 20 pounds over my ideal weight, walking around, than skinny in my coffin.

Questions such as “How did I get this disease? Will my children also get it? Why doesn’t my doctor tell me anything except “You’ve got lupus; take this medicine and come back in three months” will be addressed, along with many others.

Although many journal entries detail my struggles with clinical depression, job losses, loss of income and other dire consequences of this disease, my intent is not to linger there, but to press on toward remission, recovery and acceptance.

As many new members of our local Lupus Support Groups sign in relief upon finding us, “I thought I was the only person in the world who felt this way,” so will readers discover they are truly not alone in their thinking and their feelings.

While I compiled these entries from the perspective of a “recovered” lupus patient, I am also aware that lupus may rear its ugly head at any moment, bringing me back to the rounds of physicians, medications, and even hospitalization. This is the life persons with chronic diseases must lead, and their choices are either to feel sorry for themselves and burrow into a sinkhole of despair, or live life as it comes, one day at a time, the best way possible.

I have known persons who have lost the battle and I certainly want to live a long and healthy life.

I also know that tomorrow, my life may be ended in a freak accident.

My choice is, “I’m not going to stop living just so I can live.”

Introduction

May 2002

“Are you sure you have lupus?” My newest doctor asked as he entered the exam room, my lab tests from the week before in his hands.

“Yes. I was diagnosed in Oct. 1988,” I replied. “Why? What do the tests show?”

“Well, they show no sign of lupus. No ANA, sed rate is normal, no RA factor…”

“Great!” I burbled. “Suppose I’m in remission?”

“Or maybe you never really had lupus,” he shrugged.

For one crazy, hopeful moment, I actually thought: “Maybe he’s right. Maybe I didn’t really have lupus, after all.”

Then my thoughts flooded to the three years of constant joint pain, lab tests, five doctors telling me it was either “all in my head” or “Just rheumatoid arthritis” all the while being told not enough symptoms were showing in the blood work.

Never really had lupus? I wanted to shout: Then what was all the lung infection, the hair loss, the treatments with Cytoxan, Imuran, prednisone; the difficulty walking when vasculitis caused foot drop in both feet and I fell down a lot? Frustration mounted on frustration as the disease progressed.

Never really had lupus? Then what was with my red, swollen joints, causing one rheumatologist to rhapsodize, “What beautiful swollen knees!” When I couldn’t wear rings, watches or bracelets because of the intense pain and swelling? When even my collarbones hurt?

Never really had lupus? Then what was all the bouncing from job to job, being fired or quitting due to sheer physical exhaustion, or finding it impossible to concentrate on the task at hand?

Never really had lupus? Then why did I break out in a fiery rash after being in the sun? What was the point in hauling my body out of bed at 5:30 a.m., climbing painfully into a tub or hot water, eating breakfast so I could swallow my handful of meds (that didn’t seem to be doing much good) so I could get dressed and have my butt in a chair at my office-du-jour by 8:00 a.m.?

Never really had lupus? Then what was all the memory loss about? What words escaped me at just the right time to embarrass me so that I could only shrug and murmur, “lupus lapse” much as Richard Fish on Ally McBeal shrugged, “Bygones.”

Rather than lash out at this newest, most optimistic young doctor, I merely smiled and shrugged, “Yes, I really did have lupus.”

I wish I could tell you that my disease came on suddenly, that I went to the doctor, was diagnosed and treated immediately, and everybody lived happily ever after.

Unfortunately, that didn’t happen. Nor does it happen with the majority of lupus patients; at least with those I’ve known. After three years full of pain, doubt, fear, and anger, and after changing doctors, both primary care physicians and rheumatologists, five times, I was at last diagnosed with SLE.

And my treatment took a very long time, and brought with it, not the expected relief of pain, doubt, fear and anger, but Four (Other) Horsemen of This Disease: Weight gain, high blood pressure, diabetes, and vasculitis. I must also add clinical depression, job loss, loss of income, foreclosure, lining up for food stamps, medicines and other Public Assistance services. I was truly humbled when I picked up my handicapped parking tag, food stamps and vouchers. I was infuriated by low-level clerks who used their positions of power to assert their superiority over me, verbally slapping my wrists, and at one point, one even shaking her finger at me, yet I had to submit in order to get whatever assistance they could offer.

I had a meltdown in my parish priest’s office, confessing that I needed financial help; I had a true gasping-for-air, snot-slinging hissy fit in the college library when I was told I might not be able to complete my schooling. And all this time, I tried to reassure my family and friends that I would not, could not, leave this crappy world via my own hand, even though I admitted, however, I would just like to lie down and die.

That’s what this disease did to me.

This is what this disease did for me.

I learned there is a God, and I’m not Him/Her.

I learned that God loves me as much as he loves you.

I learned I’m not perfect, never have been, never will be, and that’s okay.

I learned that this disease is not a punishment for “sins.”

I learned how to ask for help.

I learned how to be grateful for and accept that help.

I learned that things are merely objects, that money is simply a means to an end, and not the be-all and end-all of life.

I learned the difference between needs and wants.

I learned to surrender, to “Let go and let God.”
I
learned that expectations are only pre-meditated resentments.

I learned not to discount the message because of the messenger.

If all of the above sounds vaguely familiar to those of you who are members of a 12-Step Recovery group, you are correct. I make no secret of the fact that I am a grateful member of the Al-Anon Family Group, and lest anyone fear I am breaking my anonymity, my last name is not the same as my children’s or my ex-husband’s, since I wisely had my maiden name restored upon my divorce.

When I mention friends’ names, some are members of the fellowship, some are not. I have, however, changed the names of the doctors and institutions, simply because I believe it serves no purpose to impugn their reputations. I also know today that they did the best they could with the information available at the time. They’re not perfect, and they certainly aren’t gods.

When I write of my parents’ shortcomings, I am not “parent-bashing” or playing “Let’s blame Mom and Dad.” My parents weren’t perfect, any more than my doctors were perfect; they also did the best they could during my childhood and in trying to cope with their feelings about my illness.

I give thanks daily that I was already a member of the Al-Anon Family Group and the Episcopal Church before the onset of symptoms of SLE. While working with my sponsor, while studying to be a Stephen Minister, and while literally crying on my dear friends’ shoulders, I was sustained by their love and caring support. By holding me in their arms, keeping me in their prayers, and yes, by giving me swift kicks to the posterior, these people kept me alive. To this day, I don’t know how they managed to listen to my constant crying, complaints, and self-doubts, much less stand stoically as they heard me rage at God, myself and the entire universe for whatever was going wrong in my life.

Because of them, I am alive. Today.

And I know today that is all we have – This day. This moment.

I hope my experiences inform you, strengthen you, and give you hope.

First, Some Facts…

Some symptoms of lupus:

Do you have/ever had/been told you have:

Achy, painful and/or swollen joints for more than three months;

Fingers and/or toes becoming pale, numb or uncomfortable in the cold;

Sores in the mouth for more than two weeks;

Been told you have a low blood count, anemia, low white cell count or a low platelet count;

Ever had a prominent redness or color change in the shape of a butterfly across the bridge of your nose and cheeks;

An unexplained fever over 100 degrees for more than a few days;

A sensitivity to the sun where the skin breaks out after being in the sun (not a sunburn);

Had chest pain with breathing for more than a few days (pleurisy);

Been told you had protein in your urine;

Experienced persistent, extreme fatigue and weakness for days or weeks at a time even after 6-8 hours of restful nighttime sleep.

If you have 3 or more symptoms, you should see your doctor.

According to the Lupus Foundation of America, Lupus is more common than Leukemia, Hodgkin’s Disease, Muscular Dystrophy, Cystic Fibrosis and Multiple Sclerosis. And yet, the average person rarely knows about lupus and is generally misinformed, vaguely believing it to be “kind of like arthritis, isn’t it?” While my symptoms first presented themselves as “kind of like arthritis,” and I was thus diagnosed and treated for two years for RA, other symptoms soon presented themselves, until, after three emotionally charged and pain-filled years from the onset of symptoms, laboratory tests confirmed the presence of SLE, or Systemic Lupus Erythematosus.

There are two distinct types of lupus. One is discoid lupus, where the skin shows large “splotches” or red rashes in clusters, mostly on the face, across the cheeks and the bridge of the nose, creating a “wolf-like” mask. One can have discoid lupus and systemic lupus at the same time; generally, those who suffer with the discoid form of lupus do not develop the systemic form.

The second is systemic lupus; that is, it is throughout the body. It has been classified as “an autoimmune disease.”

Lupus has nothing to do with AIDS, I must point out. I like the ‘short’, understandable description of what lupus is: Think of the body as a fort, like in the Wild West Days. Every now and then, Indians would attack the fort, and the soldiers inside the fort (white blood cells) would repel the Indians (the infection). Then the fort (body) would settle down and go back to its usual routine, until the next Indian attack

Only with lupus, there are no Indians. The soldiers inside the fort are ever ready for an attack, but the Indians don’t arrive, so the soldiers (stressed) turn on each other, fighting among themselves, eventually destroying the fort itself: lungs, kidneys, central nervous system, etc.
As of this printing, there is no cure, but it is treatable.

Words to the Newly Diagnosed, Undiagnosed and Their Families….

Actually, one word. Hope. There is hope. Despite the pain, the despair, the uncertainty, and the fatigue – there is a light at the end of the tunnel. While listening to new members of our local lupus support group, I hear their fear.

“I thought I was the only person in the world who felt this way.”

“Did your doctor tell you it was all in your head?”

“Did your doctor tell you it was ‘just’ rheumatoid arthritis?”

“My family does not understand what I’m going through. After all, I don’t look sick.”

“How can you work when you have lupus?”

“How can I get social security disability? They keep denying my claim.”

“My company fired me after I took disability. Is this legal?”

“How can I find work when I’m so sick?”

“How do you manage the pain?”

“What does cortisone do to your body?”

“Why isn’t the medication my doctor prescribed for me doing me any good? I still hurt.”

“Why doesn’t my doctor tell me more about lupus? All he said was, ‘You have lupus. Take this medicine and come back in three months.’”

“My doctor won’t talk to me when I call his office. His office staff tells me he’s busy, or he can’t talk to me, and they won’t answer my questions. What should I do?”

“How do I answer people’s questions when I tell them I have lupus?”

And, the topper: “People tell me ‘You don’t look sick. You look too healthy to be sick.’”

And their unspoken questions, as much as those uttered: Will I die from this? How long will I be sick? Will I get worse? What about kidney involvement? Seizures? Why did I get this disease? Will my children also get it?

Difficult questions, indeed.

I disagree with the perception that you must have not lived a good, clean life, or you wouldn’t have developed cancer, diabetes, --- or SLE. If anything, my life had been “squeaky-clean” up to age 20,when I married for the first time.

I do believe, however, with the perception that stress plays a major role in illness’ development, and, Lord knows, I had enough stress in my life.

And so does everyone

Stress, good or bad (marriage, children being born, promotions, are all stressors) has an effect on one’s mind and body. By the time I reached age 44, I had had several major stressors, and I reacted the way I always had – chin up, swallowed my hurt and anger, and got on with it.
Most of us Lupans have had a great deal of stress in our lives. We are, after all, over-achievers. We take on more than the ordinary person. We are perfectionists. We work too hard, don’t know how to play, and don’t rest when we should. And that’s before we get lupus. So it’s extremely difficult to “take it easy” when diagnosed with this disease.
So with my stress, I didn’t take the time to grieve over my divorces, to rage aloud at the injustices in my life.

I simmered. And my body, seeking an outlet for such stress build-up, rebelled. Like volcanoes, fires erupted in my joints, cartilage and ligaments. My emotional pain had been crying out for attention.

It was physical pain that got my attention.

What my personal journey through this darkness has taught me is this: The disease is worst at the beginning – before diagnosis and treatment.

As in my case, I was diagnosed in October, 1988 and hospitalized with a raging case of pleuritis in March 1989. This was preceded, of course, by at least three years of constant searching for a diagnosis, going from doctor to doctor, bouncing from job to job as my energy level waned and deteriorated, and dealing with an alphabet soup of medical institutions, insurance companies, mental health and rehabilitation facilities. And then, despite the aggressive treatment, my body succumbed at last

But back to the beginning statement…It’s worse in the beginning.

Once the lab tests come back with a positive for SLE, and treatment is begun, you can get better. I promise. You might also get worse before you get better. I promise that, too. But you will get to the point where the pain abates, anxiety lessens, mobility is restored and confidence in living a full life returns.

It will take time, medications, and dedication on your part to adhere to the treatment plan your physician has outlined for you, (keeping in mind “You must become your own best physician”) and determination to defeat the beast that has taken up residence in your body.
A support system is essential. Family, friends, church – learn to lean on them for a change. I know, I know, we have always been the ones to comfort, rather than be comforted. To give, rather than receive, care, compassion and chicken soup to those in need.

This is your turn.

Embarrassed? It’s nothing you did or didn’t do. You don’t blame your son’s Sunday school teacher for having cancer, do you? It happens. Through no fault of his/hers.

Still, I questioned: “Why me?” “Why now?”

Because, that’s why, my mother/myself said.

I did cry a lot when the lupus was at its worst. I wanted the pain to end; although I didn’t want to commit suicide, there were times when I sincerely wanted to just lie down and die.

While looking back on my journals for use in writing this book, I was struck by what seemed at first as an inordinate amount of “whining.” But, by golly, I needed to whine. Indeed, I not only “whined,” I complained. I ranted. Frustrated beyond belief, I lashed out at those around me.

And I railed against God Himself.

Yet somehow, I was sustained through this challenging time in my life. I attained an unexpected spiritual growth in the face of this adversity. Years ago, I would have gagged on the “goody two shoes” phrases, believing there was noting “spiritual” about having any illness. God was against me, if he existed at all, and certainly, I didn’t feel “noble” about suffering with this dammed disease.

I took heart from one of the many books I read where one of the chapters was titled, “Dying Is the Easy Part.” I knew it would be easier to die than to stand up and fight this disease. I’ve never been known to take the easy way out, however. So I allowed myself to cry.

My doctor said, “You’ve got a right to sing the. blues,” and sing them I did.

I had the determination to beat this disease, but I needed help – beyond that of modern medicine.

“Life is Difficult” M. Scott Peck wrote in The Road Less Traveled.

Nobody had ever told me that before. Any little annoyance, inconvenience, or major lifestyle change caused me to rebel. “It’s not fair. Life isn’t supposed to be like this. Bad things happen to other people, but not to me. I’ve been good.”

Rabbi Harold Kushner wrote pretty much the same thing in his landmark book: When Bad Things Happen to Good People and the truth finally dawned on me: Life happens.

Laughter is essential. Norman Cousins, in his book, Anatomy of an Illness, tells how he rented a hotel room, a projector and old Marx Brothers movies, and laughed his way out of the pain. A good 30 minutes of laughter enabled him to sleep where he could not before.

I began keeping a journal. After all, I had whined to my family and friends enough. I needed to vent. I needed to feel sorry for myself even while I presented a brave front to the world. This journal led me to a special kind of healing. I began a spiritual and physical journey, realizing one cannot be undertaken without the other.

I would someday use these entries for my story about lupus, I thought. But when every other journal entry contained references to laments of financial worries, fear and insecurities. I wondered, “Who would want to wade through all these recitations of woe? Reading about chronic illness is not a favorite choice, anyway; if a person has lupus, isn’t it enough to just read the facts and go on?”

No, it isn’t, in my humble opinion. I could read all the statistics in the world and still not feel like anyone understands how I feel – what’s actually going on inside me, emotionally, as well as dry numbers on a sed rate scale. More than anything else, I believe, I wanted people to know that the pain I was experiencing encompassed more than every joint/connective tissue/vital organ of my body. That pain influenced every area of my life…physical, mental, emotional and spiritual.
I wanted people to know that I was, indeed, legitimately suffering from the slings and arrows of outrageous fortune, even though I “looked wonderful.”

Lupus patients truly don’t “look sick.” Unlike cancer, lupus does not leave its victims looking pale, gaunt, and emaciated. We appear in radiant good health, while lupus may be silently destroying our kidneys. We look – ahem – overfed, overweight – pumped up on steroids, our faces get rounder and rounder; our trunks also bloom while the limbs remain the same. An odd appearance, to say the least, and one that is not welcomed by its hosts, prompting remarks such as “How can you be so sick when you look so – uh – (Say it—dammit! fat!) healthy.”

We generally have no visible disabilities, either, like Parkinson’s patients. There are usually no tremors, no speech difficulties, and no problems with ambulating. Certain forms of lupus, of course, can lead to seizures, psychoses, and other neurological defects, but generally, we appear healthy.

Treatment for lupus is non-dramatic, as a cancer’s chemotherapy. Yes, we take pills. Lots of pills. Generally, we are not forced into being “hooked up to tubes” intravenously. But the meds also give us hair loss, violent rashes and scars on our fragile skin, and our eyes must be protected from the sunlight.

Many of us work, at least part-time, as our illness allows. Sometimes we go into remission, for days, weeks, months, years, and we rejoice in those times. But when lupus bites into us, wearing us down with fatigue, pain, arthritic-like hands, swollen knees, mal-functioning kidneys, and neurological misfires, we are truly, once again, very sick.

Even if we still look in the best of health.

Some days you’re the bug, some days you’re the windshield.

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