The Cards We’re Dealt
by Marilyn Celeste Morris
Copyright 2011 Marilyn Celeste Morris
Published by: Vanilla Heart Publishing on Smashwords
Smashwords Edition, License Notes
This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each person you share it with. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then you should return to the retailer and purchase your own copy. Thank you for respecting the hard work of this author.
All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage and retrieval system without written permission from the publisher, except for the inclusion of brief quotations in a review.
Dedication
To all who struggle daily with the disease of Systemic Lupus Erythematosus
and
To the memory of all who have lost their struggle with The Wolf
Acknowledgements
To the Lupies Yahoo group, individually and together, for their contributions, using their collective wisdom, their unique talents of expressing themselves, their humor and all-encompassing love for each other.
Special thanks to Sandra, Grandma Barb and Mary Mike, owners of the list, for granting me the privilege of quoting messages from the board.
To those who contributed from other Lupus support sites;
To the Lupus Foundation of America, for providing information about this puzzling illness, and sponsoring the many fund raising events both locally and nationally.
Special Thanks to Kimberlee Williams, Publisher, Vanilla Heart Publishing….
She “gets us” ……
Foreword
In 1988, I began journaling about my strange symptoms, my frustrations and anger as I sought diagnosis and treatment of what would eventually be diagnosed as Systemic Lupus Erythematosus (Lupus.) I later realized I could incorporate many of the entries into a book, which was published in 2005 as Diagnosis: Lupus: The Intimate Journal of a Lupus Patient.
Since that time, I have learned a great deal from others suffering from this quixotic disease, and I began formulating a plan for this book.
My purpose, as it was with the original publication, 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 our 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 and food stamps.
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 acceptance, remission, and recovery.
As many new members of a Lupus Support Group sigh 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 “recovering” Lupus patient, I was 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 anyone with any chronic disease 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 decision 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. 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 of 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.”
Rather than lash out at this newest, most optimistic young doctor, I merely smiled and shrugged, “Yes, I really did and really do 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 like to just 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 any 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 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 when I needed it, 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 by 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.
CHAPTER ONE
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. But, in keeping with the nature of this beast, sometimes they do.
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. With AIDS, the immune system is destroyed. With Lupus, the immune system is on overdrive. 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 attack the fort, and the soldiers inside the fort (immune system) repel the Indians (the infection). Then the fort (body) settles down and goes back to its usual routine, until the next Indian attack
But 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, and other vital organs.
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 must address the disgraceful ideas espoused by the ignorant that that you must have not lived a good, clean life, or you wouldn’t have developed cancer, diabetes, --- or SLE. If only you hadn’t taken Aspertame…. If only. Blame the victim. You don’t blame the cancer patient, do you?
However, I do believe 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 Lupies 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 to me.
But it was physical pain that got my attention.
What my personal journey through this darkness has taught me is this: The disease is worse 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 statement: It’s worse in the beginning.
Once the lab tests and your doctor’s best guess confirm a positive indicator 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 this beast, this wolf, 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, 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.
Now it’s your turn.
Embarrassed? It’s nothing you did or didn’t do. It happens. Through no fault of yours, or your ancestry, or you didn’t lead a “good life”…
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 actually 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 nothing “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.
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. With or without my permission or approval.
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 physical and spiritual 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.”
Because 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.” Personally, I’d rather be 20 pounds over my ideal weight, walking around, than skinny in my coffin.
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, malfunctioning 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.
My Search Begins
From My Journals
VICTIM: A living being used as a sacrifice in a religious ceremony, a person or thing destroyed or hurt in the pursuit of some object; one injured or killed by some misfortune or calamity; a sufferer from mental or physical disease; a dupe.
SUFFER: To feel (up-bear) what is painful, disagreeable or distressing; endure with pain or distress; as to suffer a wrong; to feel or bear upward, as to suffer pain; to be affected by, exercise, undergo; to allow; permit; To experience pain, loss, distress. Endure, support, tolerate.
I searched for a label to pin on my puzzling symptoms:
The inability to type all day at a computer. The inability to sit, stand and walk for eight hours in a day without extreme fatigue. The inability to understand and implement simple verbal instructions due to a puzzling and devastating “fog” that enveloped my cognitive functions at crucial moments. And, if it hadn’t been so critical to my job performance, the temporary loss of verbal ability resulting in garbled and stuttering answers to my supervisors’ questions. Needless to say, I was “let go” several times.
Some diseases begin so dramatically, so definitively, that there is no question in any physician's mind as to the diagnosis. A lump in the breast calls for immediate biopsy and lab tests. A sudden sharp pain in the chest sends the patient to the emergency room where high-tech equipment confirms the presence of heart disease.
Not so with Lupus. This disease presents itself with such a myriad of symptoms that its sufferers doubt their sanity. Pain, stiffness in the joints surely must mean arthritis-- or, as several of my former physicians dismissed it casually, “After all, at your age, just learn to live with it.”
Sudden and dramatic weight loss, a boon to any woman struggling with her self-image ("Well, I see you've lost a lot of weight recently. Good for you; keep it up.”) Instead of an alarm that something is wrong. Other symptoms, such as extreme fatigue cause even the patient to question herself. “Tired? How can I be so tired that I just want to lie down and not even move? I must be lazy. No, I really have to nap before dinner.... what is wrong with me?"
Weeks, even months pass, with no improvement. Symptoms worsen. After the family physician, his knowledge exhausted, extensive lab tests reveal nothing unusual, the patient is labeled a hypochondriac. There is really nothing wrong, she is told.
But the pain makes believing this difficult. While seated on a stool in the shower, unable to stand, the woman notices in horror that large clumps of hair are flowing down the drain. When she manages to pull herself together for some social event, she teeters on the brink of exhaustion only to be scolded on the way home by her husband/companion/family:
"I don't understand how you can be so tired all the time. The doctor says there's nothing wrong, with all the expensive lab tests...." leaving the rest of the sentence unspoken. “It’s all in your head.”
After a time, after months and years of unrelenting, unforgiving, baffling, excruciating, agonizing, subtle, intense, bouts of fatigue and other odd symptoms. resignation sets in. If relationships are good to begin with, the family considers the patient somewhat “strange,” and tolerates her odd behavior pattern with dark humor, somewhat like keeping a crazy maiden aunt locked in the attic. Already strained marriages or other relationships, on the other hand, crack wide open and the partner's psychosomatic “illnesses” provide a good excuse for leaving the marriage or severing the relationship.
Even within the community of family or friends, an undiagnosed Lupus patient is left to cope as best she can --— feeling useless, burdensome to others, sometimes to the point of suicide.
After all, nobody can believe that this person who shows no obvious physical signs of disease—-is indeed, ill - in fact, she is ‘glowing with good health," apparently, and gaining weight, to boot. The weight gain, moon face, trunk swollen with an extra twenty or thirty pounds, on average comes after massive doses of Prednisone quells the initial pain of the disease but the toll it takes on one’s body, and emotions, begins to show. A young woman who had been a model in her pre-Lupus days, gains one hundred pounds, breaks a hip through necrosis, loses her marvelous long black hair, can’t find work due to the pain involved in simple movements, moves back to her parents’ house, and she becomes suicidal. There is nothing left before her except more pain, more days full of idleness, seeing her swollen body day after day negating the happy, vivacious creature she was a few short months earlier.
I was a little older than the typical Lupus patient, but I fit the other profile. Lupus patients (or, Lupies) are busy people, working and playing 25 hours a day. They don’t know when to quit; they are perfectionists and they have an unquenchable interest in nearly everything.
Their pain threshold is astonishing; I was typical in the way I ignored the first symptoms until they became almost unbearable. Likewise, the tolerance for stress. My motto was, “What stress?” and I was really quite unaware of the tremendous amounts of stress I had been under during most of my life, particularly the last few years.
When I told people that I had Lupus, I got one of several reactions: “What’s that?” or, “Lupus? Don’t people die from that?” “Do you throw fits or something?” One callous person even asked, “Is it fatal?” and I shot back with, “Life is fatal. “
Bless my friends’ hearts; they understood when I had to cancel a social event at the last minute, because I was “crashing” where I had been “fine” a few moments earlier.
How did this disease come to reside in me?
Heredity had a large part in my illness: My mother’s mother, Emily Richardson, was half Native American; my mother was born in Sels, Arizona and spent the first three years of her life on the Indian Reservation there. On my father’s side, I claim a great-great grandmother, Pernicia Blackwell, who had some Seminole Indian background. (Native American Indians and African-Americans are prime targets of Lupus.)
Besides the ordinary childhood diseases, chickenpox at age 6, mumps at the age of 12, and chronic bronchitis until I “outgrew it” at age 14, I contracted diphtheria in infancy. One of my first memories – if not my very first memory, is of lying on a bed with warm steam rising to the top of a makeshift “tent” of sheets as I struggled for every breath. This memory surfaced dramatically and unexpectedly when at the ripe old age of 60, I arrived at the emergency room one evening suffering full-blown asthma and the well-meaning nurse thrust a steaming mask at my face; I shot up off the gurney in a visceral, knee-jerk reaction, striking at her hand in an infantile way. She backed off while I sat, perplexed at my response, and then she offered me a mouth tube, which I gladly accepted.
A few weeks after a hysterectomy, I felt absolutely wonderful, invigorated, euphoric, and didn’t need any sleep, thank you very much. I ate ravenously, yet lost weight. Finally, after noticing my hands shook all the time, I was convinced that maybe I should pay a visit to the family doctor.
“Are you taking speed?” he asked bluntly.
“Of course not,” I huffed.
“Well, you’re almost ready to stroke out. I’m sending you to a specialist. Right away.”
The specialist determined I had hyperthyroidism and sent me to a radiologist, whereby after drinking a radium cocktail, my thyroid was dissolved. We took off to Aspen CO for a few weeks’ vacation, where all I could manage to do was sleep; I didn’t want to eat, couldn’t eat, yet I returned home ten pounds heavier. Then it was time to begin thyroid replacement therapy.
This marriage limped along until 1982, and although I mourned the loss of another marriage, I was much too busy to grieve properly.
I began feeling some fatigue, so tired I could hardly get out of bed. I returned to the specialist who had treated my hyperthyroidism, and he suggested I might have a hormone imbalance – “Why don’t you try taking Provera?” he suggested, writing out the prescription, which I dutifully had filled.
A bell should have gone off in my head, if not my doctor’s. Since it is believed that Lupus can be triggered by an excess of hormones, and this was the third hormone that my body was now being asked to process, I believe it was too much. It was totally unnecessary for me to have taken that drug. But at the time, I didn’t question my doctor.
I do now.
Two months later, my symptoms began…
I woke up with my fingers so swollen I couldn’t make my morning pot of coffee. I visited my family doctor, who pronounced, “Looks like arthritis.” He prescribed an anti—inflammatory, which didn’t work.
I then noticed a vague aching in arms, as if I had carried heavy books all day.
Wrists became involved next; nieces playing with my watch and bracelet was excruciating. Extreme fatigue and weight loss. Rash on “V” neck, fiery red as though I had been in the sun a very long time.
My Primary Care Physician was at a loss—“Probably just arthritis. After all, at your age…”
The intensity of my physical pain increased to the point that nothing was alleviating it.
By now, I was working for a sole practitioner attorney, who specialized in workers’ compensation and personal injury. I was struggling with the incredible fatigue, joint pain and swelling. Incredible pain, all over my body. My wrists were on fire, my knees swollen to the size of grapefruit. And nothing helped. Not aspirin, Advil, hot baths. Nothing.
My office moved to a building under construction. While workers were literally building around me all day long, I breathed fumes from paints, lacquers, varnish and carpet glue, not to mention cringing at the ear—splitting screams of sheet metal being cut and drills boring into concrete.
I again went to my primary care physician who prescribed Feldene and told me to come back if I didn’t get better.
I didn’t.
I need to see somebody who knows what’s going on, I thought. I asked a friend of a friend who was the wife of a physician. She ought to know.
“Dr. Charles Smith” (the true identity of all doctors in this narrative have been changed) she suggested. "He's expensive, but he’s good.”
I didn’t care, at this point, now, with my knees being a prime target. I would see him at any price.
After an extensive examination, Dr. Smith intoned, “It is my considered opinion that you have Lupus. I have no proof, so we will have to run some lab tests. In the meantime,” he said, writing out the first of many prescriptions, “no more Naprocin. We’ll use an anti-malarial drug that works well on Lupus. It will take three months for it to begin working,” he said, “but the pain will be lessened.”
“Okay, great!”
“But there are some side effects,” he cautioned.
“What side effects?”
“It affects the eyes. Your vision could be affected.”
“You mean, as in blind? I could go blind?”
“I need for you to have a visual field base checkup, and then you must have your eyes examined every six months.”
As I paid his exorbitant bill, I pondered this new medication and its effects, filled the prescription at my friendly neighborhood pharmacy (the pharmacist and I would become very good friends through the years) and went back to the office, where our clerk was anxiously awaiting my diagnosis.
“Well,” I began, “There's good news and there’s bad news. The good news is, this new medicine should take effect in about three months and then the pain will be gone. The bad news is, this same medicine might cause me to go blind.
“Some choice,” I wailed. “I can either hurt or go blind.”
No diagnosis, no relief from my pain, so I was out of there.
One night, I was overcome with pain, and my throat was “closing up.” I couldn’t breathe well. I called a friend, and told her I was about to die.
She rushed me to the emergency room, where I demanded a cortisone shot. I knew they worked, short term, from previous experiments by my various doctors. I made myself obnoxious by shouting “I probably have Lupus and I need a cortisone shot. Now.”
I congratulated myself on my assertiveness (actually I was downright hostile.) I was beginning to treat myself, as I had been told in the very beginning of seeking a diagnosis.
“If it is Lupus, it will be a “Do-I-Yourself” disease. You must chart your own recovery.”
My friend took me home where I slept, pain—free, for the remainder of the night.
As I took the medication for the third month, and my pain had not been lessened, I was true to my word…I was Out of There.
Other Various Therapies, Treatments: Reflexology, Biofeedback, Visual Therapy
I attended a workshop on visual therapy – I was urged to let the child in me draw and paint, willy-nilly, then to draw how I would conquer my disease
I drew an angel with a large golden sword, who touched me on various places of my body, sending a brilliant golden light searing through the cells, infusing them with holy light. I am kneeling in front of the angel. My guardian angel.
Shortly after this course ended, I was strolling in the mall with my boyfriend du jour when I spotted a print I had had as a small child over my bed at my grandmother’s house. I’m sure everyone is familiar with it: A guardian angel guides two small children across a wooden bridge, over a raging stream, while lightning flashes in the background. Of course, I bought it.
When I mentioned this to an aunt at a family gathering, she snorted, “Well, I don’t know why you think you were so crazy about that painting. When you were a little girl, you were always afraid the bridge would break.”
Oh, me of little faith!
It currently hangs in my grandchildren’s bedroom and I smile every time I see it.
I Go to Counseling
Somewhere, in some dusty archive bin, there is a videotape of me sobbing my heart out to a patient Brite Divinity School Graduate. I agreed to the taping because (1) the price of counseling was just right (as I recall, almost free) (2) the location and times were convenient for me and (3) I really had no other choice at the time. We determined (1) that I had felt abandoned as a child, since my father was in the military and he had frequent deployments, (2) I fell into loveless and spiritually abusive relationships; (3) I have a really crappy disease that nobody understands and I’m angry about it. Finally, I was surprised to learn that I am stronger than I thought. All the women in my family history have been strong women. So why not me? I was assured I would survive this crisis.
Doctor #2
I See a Female Physician
“Go see Evelyn Brown,” a friend suggested, when I told her my story. “She’s a rheumatologist.” I thought, “She might understand the pain I’m in, and being a woman, she wouldn’t brush it off as psychosomatic.”
I hobbled into her office one raw, rainy morning, knees swollen to the point where it was difficult to walk.
“Hop right up here, Ms. Morris,” her nurse patted the examination table, high as Mt. Everest to me at that point.
“Hop?’ I said. “You’re asking me to hop up?”
She flushed, and then softened. “Here’s a step stool; it should be a little easier for you.”
She left the room and returned a moment later with the interminable paper work. “Dr. Brown will be in to see you in a few minutes.”
I diligently filled in all the blanks while seated on the high examining table, legs dangling (surely this can’t do my knees a whole lot of good, I speculated)- and wondering why I had to put on this flimsy paper gown when all that needed to be looked at was my knees. Today, that is, although I still hurt in every joint in my body, today it was the knees that suffered the most.
As I finished the last question on the lengthy paperwork, the door opened and the Renowned Dr. Evelyn Brown entered.
She went straight to the point.
Her point.
“What beautiful swollen knees!” she rhapsodized, poking at them none too gently.
“Do they hurt?”
Do they hurt? I barely restrained myself from yelling out loud. Of course they hurt! I must have said something to that effect, or else she read my leap toward the ceiling as proof enough that yes, I was hurting.
“Hot,” she said briskly. “Your joints are hot. Especially first thing in the morning, right? I’ll prescribe hot paraffin for you...you could soak your hands in it.”
And I was treated to a hot paraffin treatment that very day. I dipped my hands into hot, melted wax, withdrawing them to cool and harden. Moments later, the nurse removed the wax, and my hands indeed felt better and were less stiff.
“This works for rheumatoid arthritis,” Dr. Brown chirped. “You probably have rheumatoid arthritis.”
What? Didn’t she know either? I wondered. Another round of medications. Another round of waiting to see whether they would work or not.
As I departed her office that morning, it dawned on me that I needed treatment more for my knees than for my hands, for goodness sakes. And my poor “beautiful, swollen knees” were still the same.
I gave this latest medical treatment a couple of months, with no success, and no resolution for the pain in my knees. She at last threw up her hands and said the words “Gold Treatment.”
I couldn’t afford to take off work every week for several hours for office visits, I told her. My job was hanging on the ragged edge, as my focus on my physical pain had caused me to make several minor errors on office paperwork, and The Sole Practitioner had given me warning.
I was once again Out of There.
A Few Words About Depression and Treatment
or
The MHMR Marching Band
What I didn’t know at the time was, I was in a depression, brought on by the disease itself. Anyone who deals with a chronic illness has a “built-in depression factor” and I was, indeed, “let go.”
Once again, I’m out of work.
What am I going to do?
Why, find something else, of course.
In the meantime, I began a search to treat the depression that was descending on me like a shroud. My cognitive functions had deteriorated to the point that when I read something, I couldn’t remember what I had just read. Not a good thing in a working environment.
Since I was unemployed, and virtually broke, I had to go to Mental Health and Mental Retardation Agency: MHMR. This would be the beginning of the Alphabet Jungle, consisting of acronyms such as TRC, WC, TWCC, and many other agency abbreviations.
I had a terrible time finding the place: First of all, the Summit Clinic is not on Summit Avenue. “Oh, it used to be, but they just kept the name when they moved,” the clerk at the desk chirped.
MHMR was located, predictably, in the poorest, worst, “bad” part of town.
I parked my car in a junk-filled lot near vacant buildings with broken windows;
I emerged from the elevator to see a sign on the 2nd floor that says MHMR
But a cheerful clerk tells me I’m in the wrong place.
“Go up one more floor.”
Grumbling to myself, and wondering what the hell I was doing here in the first place, I trudged up the flight of stairs.
I entered a gray waiting room where stale body odors assaulted me and sat gingerly in the on one of the gray-blue plastic chairs placed on soiled gray carpet.
It’s miserably hot in here.
I read the signs all over the walls: “Do Not Park in the grocery store lot. Your car will be towed.”
“Bring all meds with you to next appt.”
Gray People shuffle in.
The Retarded. The Hostile.
Some tell silent jokes to themselves. Irritable mothers, hyper grown children.
The staff here deserves a medal
Finally, it’s my turn to see the doctor.
He is weary-looking.
He asks questions.
“Every felt like killing someone?”
“Not yet.”
He is not amused.
He scribbles on a pad.
I get a diagnosis.
“Adjustment disorder.”
And a prescription for Pamelor.
As I am leaving, a nurse comes up to young man who is rocking back and forth, telling incomprehensible jokes to himself.
She hands his silent, drawn mother a bottle of pills.
“These will help his delusional states. Have him take two at lunch and two at dinner.”
She says this right in the open. In front of everybody. Of course, there can be no secrets here.
Everybody here is crazy.
Except me.
Doctor #3
So I next went to work as a secretary in the management office of a large urban mall.
I lasted at that job about as long as I had lasted with Dr. Smith.
And I was still hurting.
I would try another job, and someone else, thank you.
That Someone would be Dr. Green. He more or less shrugged after extensive tests: “I don’t find anything definitive.” (A “diagnosis” I was destined to hear over and over again.)
Doctor #4
So I would be directed to University of Texas Southwest Medical Center. Surely at this prestigious teaching hospital, a diagnosis would be found.
Somewhere along here, it gets a little strange. (As if it weren’t already strange enough!) I kept thinking about a woman I had known several years earlier. At odd moments, while I’m driving, not thinking about much of anything.
She had Lupus.
She had died of Lupus.
Why was I thinking about her? We were not close. We worked together at the Museum (as volunteers). In fact, I thought she was rather “crabby”---now I was beginning to see why.
Pain makes you crabby.
Why did I suddenly think of her? Could it be that I really did have Lupus, but nobody knows it but me? Does this mean I’m going to die?
“Not today,” I muttered grimly, as I swung my car into the parking lot at UT Southwestern in Dallas.
“We tested you for SLE,” the doctor told me. She was the finest rheumatologist around. Yet she said, “We found nothing conclusive.”
How many times had I heard those or similar words “We can’t find anything definitive.”
. I returned to the law office where I had begun working after leaving the shopping mall job, diagnosis of “Connective Tissue Disorder” in hand.
Since I had spent more time out of the office than they felt was reasonable, I was summarily dismissed.
The journal entries begin, (Feel free, by the way, to skip over parts you aren’t interested in, or feel like you’ve read it before. Sometimes I repeat myself: Lupus Lapse.
I decided to keep a journal reflecting my daily bouts with the disease of Lupus. If you think there are an enormous amount of entries, you should have seen those that I cut! Many seem repetitive, but that’s what I was feeling at that time in this battle with Lupus.
I chose to personify this disease with the name of “Lupe” – and she takes on the persona of a gypsy, moving at whim throughout my body, setting up camp some days in my knees, other days in my wrists…and always, she builds campfires, stoking them, tending them carefully, unmindful of the pain these fires are causing me.
Lupe is actually a quite remarkable woman. She is vivacious, fiery, (pardon the pun), flashy, an independent, gutsy sort of girl. Lupe has steadfastly refused to tell me why she has chosen my body to explore, nor will she listen to my pleas to vacate the premises. She just hums softly to herself, stirs the ashes of her campfire, and sits back to gaze into the smoke.
This past week, Lupe was in her finest hours. She traveled quickly, all over my body, building campfires and then moving on to a new spot. The weather was cold, sleet hitting the windowpanes, and the wind howled to get in.
Lupe was not, by God, going to get cold. She moved rapidly and her fires kept her warm.
3/18/88
There is a struggle going on inside myself. I don’t know what it’s all about, but I know it hurts.
I have been no stranger to pain these last two years. I wake every morning with the same disease I went to bed with the night before…. no miracles occurred during my restless sleep.
The physical pain will be there, I’m told, forever, unless or until I have a remission. And I can cope with the physical pain, I believe. Better than the accompanying depression that seems to cry out at night and to greet me first thing each morning.
I hurt. I don’t want to move and make it hurt any more. Depression tells me to stay still. Don’t get up and go to work. Don 't do your meditations, your reading, take the phone calls from your friends. Depression tells me I’m always going to feel used-up, burned out, crippled.
Diagnosis at Last!
October, 1988
Job-wise, I kept taking the same action, expecting different results.
Went to temporary work, more of the same. Was put on the health plan, which led me to the doctor who diagnosed my baffling illness. Dr. Dunn. He asked me if I were part Indian.
“Yes, I am. My grandmother was half Indian.”
He nodded. “North American Indians (or Native Americans) are particularly susceptible to Lupus. We’ll get some blood work done…”
I sighed. Would there be anything to see? Another time of waiting, wondering and hurting.
The blood work came back.
And the little monster had shown up.
“It’s Lupus.”
“Thank God,” I breathed. “Now we know what it is. Now we can treat it.”
He told me my reaction was typical. After all this time…an answer.
I was prescribed cytoxan and prednisone.
Where There’s a Will, There’s a Burial plot.
I tell my family I have Lupus – what it can do to me. They are puzzled, they are afraid. They are angry. They are helpless.
Except for my kids…they buy a burial policy for me. Not exactly what I would want as a gift, but I am touched.
However, it was almost a case of “too little, too late.”
By February of the next year, I was in the hospital.
UNDATED
I hate this disease. I feel like I don’t deserve the pain and inconvenience it causes. I don’t like being different from other people. I feel like a child who can’t run and play with the other kids. I feel financially burdened, barely able to keep going, everybody wanting a piece of me and not enough of me to go around.
I’m scared, God. I think about dying a lot. Well, not a lot, but at odd times. I don’t want to die because of this disease, thank you. If I had my way – I’d be an old lady in good health, who just passes away in her sleep
But I won’t get to choose my manner of death. I can, however, choose my manner of living. I choose to live each day the best way I can. I treasure my friends, my family, and wish there were more time for them. I miss my children and wish I could be with them more. I have to remember that they have their own lives and not to burden them unnecessarily with my disease.
I want this Lupus to just go away and leave me alone. I want the doctors and medical bills and the blood tests to just fade away into oblivion. I want to bargain with God – think if I’m a good girl, He’ll make me “all better.” I also know God expects me to take care of this stuff as best as I can.
4/23/89
My doctor advised me that in order to help the vasculitis in my ankles I should sleep in lace-up, high—topped tennis shoes. I went to Wal-Mart and in the boy’s department found some red and white high—topped tennis shoes.
The first night I put them on to sleep in, I was in misery.
It was summer. They were hot. I ended up kicking them off during the night.
This would never do. A friend suggested that I make a game out of it. Air-condition those dudes.
I ruined my manicure scissors cutting “vents” into the sides of the sneakers; then I cut Hearts and Stars all over, and on one shoe with magic marker printed “Wonder Woman” and on the other shoe “Shazaam”.
One night, while getting ready for bed, I happened to see myself in the full—length mirror: it reflects this outrageous creature without my wig, thin, wispy black hair sticking out in odd directions from a nearly—bald head; moon face devoid of contouring makeup; unmascara-ed eyes wide with fear; pale arms and legs incongruously thin against a thickening body bloated from prednisone ---a body that was clad in a white cotton gown with lace on the waltz length hem; and, beneath the flounce, red, high—top boy’s tennis shoes,
I gazed at this pathetic creature and it gazed back, and suddenly, I began to laugh,
And so did the reflection. We laughed until we were breathless, this crazed—looking woman, and then we trundled off to bed, wrestling the red, high—topped tennis shoes into position against the makeshift footboard, and falling into a deep sleep.
And that’s when I knew I was getting better.
Somehow, I knew this was a sign of mental, if not physical, health.
UNDATED
I found a Lupus support group.
They asked us last night what makes us fatigued. Heck, I don’t know! I don’t even know when I’m tired until I drop over. I have to learn the early signs and stop before I get there. I’ll have to ask someone to tell me.
Now I know…I’m not lazy. I am tired. Lupus makes me tired to begin with.
Worry makes me tired. (Money, moving, etc.)
Dishonest people make me tired…those who “blab” about nothing at all make me tired.
Procrastination makes me tired. The actual doing of the chore makes me feel better, actually.
Pain is the biggest fatigue producer. If I can stay out of the pain – fighting the pain is so very hard. I have to remember to take some meds for the pain.
Damn this disease. I don’t want to go through what I’m going through. It’s too much.
I have to grieve over my lost health. Part of me is gone. I’ll never be the same again. Damn.
Today I begin Cytoxan.
I went into a rebellion yesterday afternoon. I don’t want to do this. I want things to be “normal.” But the reality is, I have a disease. The reality is, I must control this disease. I am not passive. I am not a martyr. I am not a “victim” of. anything. I am a survivor.
So I took my Cytoxan.
The Texas Employment Commission Chorus
What a screw-up.
I was told to wait until my name was called. By 11:15, I asked. I was told, “You missed your turn when the 10:00 group was called.”
I told them “I was told to wait until my name was called.”
I finally saw a claims examiner, got chewed out because they didn’t give me the correct print-out last time – (each examiner has his favorite print-out, it seems.)
I am to return on the 15th with my forms all filled out, etc. etc. If I were going to get sick, it would have been then.
I left and went to Social Security. Quite a walk with my cane, but I had free parking at TEC. Social Security was confusing, to say the least.
The Social Security Symphony in C Minor, or “You’re Not Sick Enough”
The nearest I could figure out was, I needed to be sick enough to have not worked for a year, was not expected to get any better or was near death, before I could qualify for a disability payment of $500 a month.
Puhleese!!!
There is something very wrong here.
The upshot is, wait and see about my unemployment. If they contest it, then I’ll file for disability & SSI.
I have no pride left. I’ll do what I have to do to survive.
I have $10 in cash till I get a paycheck of some kind on the 15th.
I’m definitely into fear.
Undated:
I thought I would do God’s will if He would just show me. However, I was thinking, “I’ll do God’s will if he’ll show me and if it fits in with my plans.”
All I knew is I’ve been setting limits on God. Let Him do for me what I cannot do for myself.
He always does so much better when I stay out of His way.
5/23/89 11:30 p.m
Another damn disease!
I found out today I have diabetes, too. That explains all the bladder problems and vision problems. I’m taking medication for the diabetes, now, too. I can handle it.