"I realize I've had unrealistic expectations of myself and my husband with our new baby, and have made myself sick with worry and anger. It's been eleven years since I've had an infant and I guess I had forgotten the inevitable changes a baby brings. I believe I've come to terms with reasonable expectations and have accepted the changes in my life-style."

My well-rehearsed speech seemed to satisfy him and after some brief conversing, he walked away looking pleased. He was gone and I could try to sleep. I have no idea what he wrote in his report and honestly don't care. Certainly I was frightened and depressed -- I was very ill and no one was trying to find out the cause. And I was incredibly angry, knowing this was not psychological nor mere hormonal imbalance. Yet, the physicians I consulted refused to give me credit for knowing my own body. They didn't have a clue to the nature of my malady and a being female, anxiety and emotional instability had incessantly been the assumption. Now that I had just given birth, postpartum depression was the obvious prognosis.

In early childhood I began suffering with severe headaches which caused blue discoloration around my mouth, accompanied by vomiting. Even in the absence of headaches, bouts of vomiting were as normal to me as breathing. My mother spent years taking me to various physicians for these problems before the cause was found. As I got older, the migraines came more and more frequently until home-schooling was a necessity during my eighth grade. That year, at the age of thirteen, I was finally diagnosed with vascular migraines; a weak blood vessel in the brain. In the 1960's and early 70's, childhood migraines (much less childhood lupus) were not widely recognized as they are today. As a result, I had already visited with a psychologist about "playing" sick, leaving me with a sense of humiliation and insecurity. Realizing the doctors believed I had emotional problems began my inhibitions in expressing the harshness of particular symptoms. While panic merely receives a condescending response, a calm approach does not convey the severity of certain ailments. This, I believe is a dilemma many women face. Too often our physical complaints are thought to be psychosomatic manifestations of an inability to cope with stress. As a general rule, women are not the emotional- weaklings we have been labeled.

As an adolescent, I developed large red, tender lumps on my thighs accompanied by joint pain, stiffness and swelling. My mother and I consulted one physician, blood tests were normal and I was sent away with antibiotics. Yet, these symptoms continued for two years and were joined by other peculiar occurrences. It was a condition I now know to be Erythema Nodosum, a form of vasculitis, but at the time I pursued it no further. I had already learned not to press these matters or I'd find myself telling some psychologist what I saw in silly ink blot patterns. When I was ten, I awoke one morning with my face as round as a basketball, my eyes swollen shut. It only lasted for two days and the cause was never known. At fifteen, I began having serious episodes of bronchitis which came twice a year thereafter. The "growing pains" continued in my leg, which I'd had since earliest remembrance. It seemed I was constantly twisting or spraining an ankle. Simply stepping just the wrong way would result in painful swelling and the necessity for crutches for a few days. Many more unusual ailments came and went without treatment, so I just never gave them much thought. At the age of thirty-two, after the birth of my second child, my attitude changed, and for the first time I became truly frightened.

During labor and delivery, I experienced excessive bleeding and afterwards felt traumatized rather than joyful. It was not the type of fatigue one would expect following childbirth, but a complete exhaustion so overwhelming that breathing required all the energy I possessed. I was too tired to sit up, feeling as though someone had pulled the plug, draining every ounce of life from my body. All I wanted was sleep, but sleep eluded me. My head spun with dizziness and my body felt extremely heavy, as if restrained by the force of gravity holding me to the bed. My legs were so weak I couldn't stand without help, my arms too weak and painful to carry my son. I told myself it must be my age.

A few years prior to having my second child I experienced a new erratic complaint; one far more painful than anything I could have imagined possible. Through the many curious symptoms I've had, this one remains my primary complaint with its intensity and disabling effect. The pain is equivalent to touching a hot coal, burning from the inside out. I began to seriously consider the possibility of spontaneous human combustion. The burning is so intense, my muscles involuntarily contract and it renders me temporarily immobile and speechless, gasping for breath. Each attack lasts approximately thirty seconds, then tears spontaneously pour down my face. For about six weeks, the skin over the affected area remains hypersensitive to touch, even of clothing or a breeze of air. I may experience anywhere from 1 - 20 such burning attacks during the course of these six-week periods. Over the past eight years, I have encountered approximately thirty of these episodes in various locations on my trunk, neck, shoulders, sides, and arms. This problem is so rare that not even a thorough Neurological exam could explain it, and nothing I've read describes it. I attempted to detail the unbearable harshness of this burning within my body, but it was obvious by the many doctors' questions and remarks that the reality of true excruciating pain was not getting through. It was perfectly clear at the onset of this condition, not one of the physicians I consulted had ever heard of such. Many of them therefore ignored it like a child's dramatized ploy for attention.

I realize the medical profession is a far cry from an exact science and much of the work is little more than an educated guess. Yet it amazes me how so many physicians disregard physical complaints as non-existent when lab tests are negative. I went in with severe pain -- was poked, prodded and evaluated. "Your tests are within normal limits," the physicians had said smiling, sending me away as if I'd merely come in for a routine examination. But I still had the pain. When no abnormalities were found, I was dismissed as if normal test results constituted a cure.

When my son was four days old, the burning pain, skin sensitivity, and horrendous itching ran rampant throughout my body, flaring in six different nerve passages at once. I tried every known prescription, over-the-counter, and herbal remedy known for itching, but it was insatiable. I could not scratch, lest I cause an onset of burning pain. My instinct was to hold ice on the area, which I found not only helped the burning pain to subside more quickly, but also numbed the itch. Thoughts of suicide, followed by guilt and anxiety flashed through my mind. I did not want to die, but feared death would be my only relief. I began rounds to clinics, emergency rooms, chiropractors, a massage therapist, and underwent acupuncture. After two weeks of this burning hell, I began vomiting uncontrollably. I was back in emergency rooms, in medical clinics and after ten days was hospitalized for dehydration, recommended for psychological evaluation.

After my release from the hospital, physical problems multiplied almost daily. I experienced severe night sweats, my hands shook violently, I was light-headed and felt drunk. Skin ulcers developed over the sites of the burning pains, my thighs and buttocks were covered in hives, and I suddenly lost the ability to urinate (neuro-genic bladder dysfunction). My legs and feet were numb to the touch, but felt like hot pins were pricking beneath the skin. A painless, jolting sensation ran down my back and legs upon forward movement of my head (Llermitt's Sign). I developed asthma and chest pain, with common household chemicals such as air fresheners or hair spray sending me into horrible coughing spells caused by bronchial spasms. The muscle weakness worsened and I was unable to stay out of bed more than an hour at a time. Then the dreaded pain with range of motion returned in my left eye. This had been but one more undefined condition, with the slightest eye movement producing such sharp, stabbing pain that I want to pluck my eye right out of my head! These episodes also endure about 6 - 8 weeks, then spontaneously subside. I had experienced this painful eye movement several times during the previous two years, without explanation or diagnosis. There was no visual disturbance and an Ophthalmology exam was without remark.

Three solid months of illness confined me to bed without relief, without medical testing, nor any physician taking me seriously. The weaker I became physically, the more difficult it was to maintain any kind of optimism. The unexplainable symptoms bombarding my body frightened me. Fear grew to unmanageable proportions, knowing something was terribly wrong and no one was trying to find out the cause. I feared death was near, as my mind wandered out of control. Even my husband doubted that my illness was real, and I felt forced to conceal my sense of impending doom. I then quickly began to doubt myself. "Was this all in my head?" I wondered. That thought frightened me still more.

The physicians' remarks eluded to the presumption that my physical ailments resulted from mental rebellion against motherhood, and I felt guilty. I wasn't enjoying my baby. I just wanted him to sleep, or someone to take care of him so I could sleep. At that point, I believe I could have slept around the clock, but I had a fussy new-born who woke up every hour. I felt certain his irritability and restlessness were caused from sensing something wrong with me. I needed help so desperately, but had very little. My mother helped as much as she could, yet she had her hands full running the family business while also caring for my father who has cancer. One thought would be, "Maybe the doctors are right," and the next thought was certain they were wrong. While questioning my own emotional stability, self-doubt and self-analysis were driving me crazy. I gave up the search for medical help and turned to my spiritual beliefs to get me through the traumatic experience. Suddenly, I had a moment of clarity amidst the incessant mental chatter, remembering a principle that has saved me through many emotionally-painful times.

"A year from now, when this has passed and I'm looking back, how do I want to see myself having dealt with this situation? Do I want to know I walked through it with dignity and grace, or with anger and self-pity?"

Self-respect and poise was my choice as I took control of my attitude. I made a conscious decision that I would no longer antagonize myself by resenting the lack of human comfort and understanding but would trust in the principle of purpose. I finally found inner peace through these simple thoughts:

"We all have to die of something, and this may be mine. I believe every experience offers fortitude, endurance, and strength of character if I am willing to learn from it. Today I will welcome this teacher into my life, looking for what I can learn rather than fighting and fearing it, thereby freeing my mind to enjoy as much as possible. Rather than concentrating on myself, I will focus on the needs of others and how this experience can benefit someone else."

That was my gateway to freedom. It suddenly no longer mattered whether or not I received medical help. I was alive that day and deep within, we all know tomorrow is promised to no one.

The first nine months of my son's life remain a blur, as I was determined to overcome these physical problems through sheer will power and prayer. I slowly regained energy, the worst of my symptoms passed, and I could once again function fairly normally. I went on with my life, finally able to enjoy my children. Some days, an ankle or hip might be so painful I could barely walk, but the following day, or perhaps a week later, it would be fine. I once went numb from the waist down for about eight weeks, but could still walk. I dared not tell a doctor about it, for even I thought it sounded pretty difficult to believe. Conditions such as those, as well as constant headaches, nausea, coughing spells, and painfully-swollen lymph glands were easy to ignore -- these had been my life-long companions. So I forged ahead in spite of the problems, doing what I would have been doing if I were perfectly healthy. Yet, in the darkened recesses of my mind lurked the knowing that it was just a matter of time until the burning pain would re-emerge.

The following two years held repeated episodes of a variety of previous complaints. Though the burning pains kept me house-bound, at least I was not bed-ridden, and I could force myself to function in spite of all other pain. After coming to know this form of suffering, (some undefined type of neuralgia) anything else was easily tolerable. I'd never known life apart from pain until I began steroid therapy in my 30's and experienced five months absolutely pain-free. I had always believed some degree of pain was a normal part of daily life for everyone. After years of being patronized, shuffled quickly out of exam rooms with prescriptions for nerve pills and anti-depressants, I accepted "There's nothing wrong with you" without argument, though I knew it wasn't true. I could see no point in frustrating myself further by searching for answers which no one seemed to have. Apparently I just don't follow the diagnostic rules and many physicians don't want to play with cheaters.

Eventually, I found myself forced to re-enter the medical maze when one beautiful morning in March 1994, I awoke blind in my left eye. The partial blindness did force physicians to admit the problem was physical. It seems a shame I had to lose something as precious as sight to finally receive recognition, yet otherwise I would still be without treatment, categorized as neurotic. This was diagnosed as Optic Neuritis, a condition secondary to an underlying disorder. Testing for Multiple Sclerosis (MS) began, but this suspicion was soon eliminated. I was riding an emotional roller coaster and couldn't remember buying the ticket.

With MS ruled out, the next guess was Systemic Lupus. This didn't surprise me. I was first tested for SLE eight years earlier when my left carotid artery suddenly became swollen and painful, accompanied by extreme fatigue, malaise, and short broken hairs standing up all along the part-line on my scalp ("lupus hair"). When I asked the doctor about these broken hairs, he looked closely, then asked if I had cut them. I didn't know then it was of importance to tell my physician that I'd been sunbathing every afternoon for weeks and had temporarily developed a small, red, scaly lump on my lower cheek. The swollen artery was effectivley treated with a six-day dose pack of methylprednisolone, but the cause was undetermined. Three years later when the burning pain first developed, I was again tested for lupus. With "insignificant" lab results, I was dismissed as if I'd failed the test, failed to make the grade. I became numb to physicians and their apathetic rejections of my insufficient scores. How many times I had been told, "You're a perfectly healthy young woman; relax and stop worrying." Suddenly, I was blind in one eye, wondering if this was somehow representative of perfect health.

The twentieth physician I consulted over a ten-year period listened to my long list of symptoms, taking notes and asking questions. I was so tired of repeating the same speech over and over, only to be interrupted and sent on my way without relief. But this physician took interest. He first asked about headaches, and I explained my history, noting that steroids had prevented them. He then asked if I'd had miscarriages, and I answered "Two". I told him of the D & C required to stop the bleeding from the last miscarriage, and the hormone injection I was given to slow the bleeding after childbirth. I also informed him of being treated eight years earlier with cryotherapy for cervical dysplasia. His next question presented an oddity I had inquired about many times during the previous seventeen years, always without explanation:

I had known about this false-positive Syphilis result since my pre-marital blood test in 1979, and that the titer greatly elevated during pregnancy. But, again, any physician I questioned about this phenomena had dismissed it as unimportant. My gynecologist simply said there were just too many possibilities to spend the time and money searching for the cause. A nurse once tried to convince me that I had actually had Syphilis at some point in my life! Each individual symptom, taken separately could easily be seen as insignificant, but I hadn't found anyone willing to view my medical history collectively. I was like a big dot-to-dot picture and no one was connecting the dots. This Rheumatologist did so, with the false-positive Syphilis result, miscarriages, headaches, history of Erythema Nodosum, and the episode of a swollen carotid artery providing the prompt to test for the presence of an auto-antibody known as Anticardiolipins (ACL), something I had never before been tested for.

My medical history had baffled the physicians who were uneducated on antiphospholipids. Though my ANA was positive, it was considered a low titer, and DNA and SM antibodies as well as Rheumatoid factor were negative. I have since learned that this is not unusual among those with the Lupus Anticoagulant Syndrome. Rather than presenting with decreased white cell and platelet count, as is more common in lupus, mine were slightly elevated. These lab results, I now understand are conducive to Systemic Vasculitis, a condition which explains my peripheral nervous system complaints, migraines, bleeding and vascular problems, and various expressions of neuritis. Unfortunately, as all lupus patients know, SLE suffers more from lack of awareness than any other major disease.

It is not my intent to condemn any of the professionals I consulted, as I realize lupus is a difficult illness to diagnose. Many physicians are familiar with only a very small percentage of the ravenous Wolf's many masks. It is my desire to remind each lupus patient of the on-going importance of communicating with the medical community. We must heighten awareness of all aspects of SLE, to help new patients receive earlier diagnosis and proper treatment. For me, something so simple as the introduction of Prednisone after childbirth would have eliminated those following months of hell, and could have prevented loss of sight in my left eye.

My list of symptoms and secondary conditions seems almost endless, and Prednisone is the best treatment for most of them. Unfortunately, steroids tend to increase the symtoms of Fibromyalgia. Though pain continues to be a part of daily life, with fibromyalgia, plueritis, joint and cartilage problems, and bladder spasms, the most serious possibility I face is the high risk of stroke and the danger to my right eye. I currently take a mere 10 mg. of Prednisone daily, which isn't enough to make me feel much better. Low-dose, oral chemotherapy drugs have recently been introduced as a complimentary component to the steroids. Though these medications help control the inflammatory process of SLE, they also make me highly suseptible to infections. Neurontin has been prescribed for the mysterious neuralgia. These will be life-long medications.

I have come to accept this enigmatic part of my life's journey, counting it among the wealth of experience I can use to help, comfort, or inspire someone else. Every now and then, when my arms are too weak and painful to brush my hair, (which continues to fall out!) or when one leg refuses to support my weight, the thought of being crippled still settles like rocks in my stomach. I've experienced brief pain in my right eye a few times and the fear of total blindness temporarily grips me like a silent stalker. Yet, I adamantly refuse to entertain "what if's." As with anything beyond our control, acceptance and a sense of purpose are the keys to a peaceful, fulfilling life. I sometimes feel saddened by those lost months during my son's infancy, especially when I see a healthy, smiling mother with a newborn baby. But thankfully, I have been released from the once taunting guilt I felt, knowing my illness was not caused by lack of love for my child. It has been eight years since the birth of my son and I have yet to enter remission. My little boy has never known a vibrant mother as my daughter once did. It has now been six years since the left side of my world went black and no one can predict what may happen next. Yet I believe my future is no more uncertain than the healthiest individual's, for life guarantees only the moment to us all.

With any physical or emotional problem we encounter, half the battle is fought between our ears, as attitude is a major contributor to physical well-being. Initial grief is a natural response to being diagnosed with an incurable illness, as the mind attempts to deny, resist, and then somehow comprehend its permanence. Yet, acceptance of and a peaceful co-existence with your disease awaits you if you will move toward it. My own mental and emotional struggles with despair, panic, resentment and self-pity occurred and were resolved four years prior to receiving a definite diagnosis, during that time of illness which forced me to realize something was wrong and no one but God could help me. Receiving a diagnosis actually came as a welcomed relief. Finally, a physician confirmed what I had known all along ~ "I'm really not crazy!"