I awoke that summer morning in 1992 excited about the coming day and evening. I would be attending my 20-year high school reunion. I was looking forward to catching up with my old classmates and reliving a time of life that, although I didn’t miss, was filled with good memories. The reunion did not disappoint and I was sorry to see it end. I also had the added surprise of being given
the title of ‘best figure’ by my classmates. Instead of acknowledging the classmates who had become brain surgeons or political leaders, I guess we figured that after 20 years, the only accomplishment that really mattered was whether or not we had gained weight. When I arrived home that evening though, I was not just tired, I was exhausted. Unfortunately, that feeling of exhaustion would be the beginning of a new and very different chapter in my life.
Being tired was nothing new to me. I had pushed myself daily for years to run the business that my husband and I had started, and to raise a teenage daughter and a five-year-old son. I had always been active and I loved to exercise. I regularly rode my bike down a nearby canyon and walked virtually everywhere. On our way home from somewhere, I would often jump out and walk the rest of the way.
Even though I exercised, it was not as if I was filled with energy. I was often tired, but I pushed myself thinking that it was the right thing to do. I thought exercise would give me energy. In a healthy person, that’s true. However, as I learned years later, energy is what your body makes to allow you to exercise and lead a busy life. If you don’t give your body the nutrients it needs to create energy, you will someday cross the line from tired to exhausted. That is what happened to me that eventful summer day. My body crossed the line, and it would be a long time before I was able to find my way back.
New and disturbing symptoms were soon added to the overwhelming exhaustion. I had gone to Denver for a few days of vacation with my husband. One morning, after having a latte and croissant at a French bistro close to our hotel, we walked to a nearby park to get some exercise. It was a ritual I loved; exercise and food together. As we began our walk, I could feel my legs start to tighten and then completely cramp up to the point of total immobility. After some time, I was able to limp my way back to our car. I was confused and a little scared, but I thought, or hoped, it was something that would pass. It did not.
The muscle pain and inflammation that began that day were now part of my new and increasingly terrifying life. New symptoms were added soon afterwards. I noticed that my nose would start running whenever I ate something. I also started having daily migraines. They were like no headaches I had ever experienced and anything could trigger them. Just bending over to pick something off the floor could trigger a headache that would last for days. By now, I was also constantly running a low-grade fever. The symptoms were very flu-like. I was achy and feverish. It was time to go see a doctor.
My blood work from the doctor’s visit came back showing a high sedimentation rate and elevated potassium. Apparently, the high potassium levels are indicative of someone that has been injured in some way. The doctor kept asking me if I had fallen or had suffered some muscle trauma. “No, nothing,” I said. The doctor prescribed an antibiotic. What for, I wasn’t sure. I started to take it, knowing it was not going to fix what was wrong with me. By the fourth day, I began to feel worse and stopped taking it.
The next few years went by in a blur of pain. I was spending most of my day in bed. At times, I was unable to wash my hair or even climb a flight of stairs. My chest hurt when I would take a breath, and at times it felt as though someone was driving a nail through my foot. I could sit at the computer for short periods of time, but would have to support my elbow with my other arm while I moved the mouse. I would pay dearly for that brief indiscretion with increased pain and fatigue. I also had nosebleeds all the time that I couldn’t stop. I knew I was dying and needed to find answers.
One day, a friend suggested I get tested for food allergies. Although food intolerances are more common, true food allergies occur in 1 in 25 adults, and recent studies indicate their incidence is on the rise (National Institutes of Health, 2010). Apparently, a food allergy can be identified by an assay that uses a small amount of blood to check for antibodies against specific foods. I traveled to a Denver hospital for the testing. They tested me for 25 different foods on the first panel. I went home to wait for the results. When they called with the results, my husband happened to answer the phone.
I was glad he did. This was the first time I had proof that something was seriously wrong with me. They said, “We have never seen anything like this, your wife is highly allergic to everything we tested her for.”
The list included brown rice, green tea, broccoli, dairy, eggs, wheat, you name it—everything! I took the list they sent of the different foods to a local health food store, thinking that if I just didn’t eat those things, I would get well. I would’ve done anything to get better. As I walked around the store, picking up different foods and reading the labels, I realized there wasn’t one thing I could eat. I left the store in tears. I made a decision that day to just do the best I could. I would try to eat as healthy as possible. Previously, I had never given much thought to my diet. I wasn’t overweight and I ate what most other people did.
We dined out at restaurants a lot because of our busy schedules, and being in a small town, there weren’t many dining options. Almost daily, before I got sick, my husband and I would meet somewhere for lunch. It was usually the first thing I would eat that day. Most often, being a creature of habit, I would have a grilled ham and cheese sandwich with some fries and a few cups of coffee. Dinner was
usually something similar. I remember thinking one day that I hadn’t eaten a fruit or vegetable for almost three weeks. “That can’t be good,” I thought.
Turns out, I was right.
My new diet progressed slowly, but steadily over the next few years. My teenage daughter, Kristin, was a ready and willing participant in this endeavor. She had begun to experience frequent headaches and after seeing what had happened to me, she was going to avoid the same fate if she could. One of the most vivid memories I have is of the night we both sat at our dining room table staring reluctantly at the salad before us. The idea of eating it with a fork just made it more disagreeable, so we picked up each leaf individually with our fingers. We weren’t trying to enjoy it; we were just trying to get it down. During the same time I was trying to change my diet, I had remembered a friend that was suffering with a debilitating stomach problem. She tried everything she could to obtain relief, including traveling to a Chinese herbalist in Los Angeles. The herbalist gave her a tea that included worms!
I couldn’t imagine how anyone could be so desperate that they would drink something with worms in it. It wasn’t long before even I was willing to try worm tea if it would help.
So, my husband and I took a trip to Los Angeles. As we walked into the small, cramped shop in Chinatown, we were greeted by a vast array of very strange sights and smells. There were seahorses in jars and creatures I had never seen before. The shelves were lined with herbs, dried roots, and flowers. It smelled musty and pungent. I was told to wait in a small back room. Before long, we were escorted into an even smaller, dimmer room with a curtain across the doorway. The Chinese doctor sat behind a desk and my husband and I sat down on a small couch.
He did not speak English, and I didn’t speak Chinese, so we just looked at each other. Before long, he simply said, “Lupus.”
I turned to my husband and asked, “What did he say?”
“I think he said lupus,” my husband responded.
The Chinese doctor nodded and began to write on a pad. He handed me ‘the prescription’ to be filled at the counter in front. I was just going to go with it. I didn’t think I had anything to lose.
As I handed the Chinese woman at the counter my prescription, I said, “No bugs!”
“Oh, you vegetarian?” she asked.
“Yes,” I lied, with no remorse to this day.
I returned home with renewed hope. I was to make the herbs he had given me into a tea and drink about four cups a day. The tea was the most awful tasting and smelling concoction I had ever experienced. When I took a drink, I would shove a lemon wedge in my mouth to take the taste away and to keep myself from throwing up. It made my house smell as bad as the tea tasted. I did start to feel slightly better though, so I kept drinking it.
Once a week, a new packet of herbs would arrive in the mail, and I would diligently force myself to make the tea and drink it.
My first indication that something was not quite right with the tea was on a short trip I had taken. If I went anywhere, I would take my Chinese cooking pot and a small hot plate to cook the herbs in the hotel room. I still can’t believe someone didn’t report me for doing something, if not illegal, just plain weird.
One day, while cooking the herbs, I walked into the bathroom to check on them. A big cockroach looking thing was trying to escape from the boiling water!
I tried to smash it with the lid and was horrified that it had come from the herbs I had been drinking.
Back home a week later, I opened up a newly delivered package of herbs to prepare my tea. I took one look and started screaming uncontrollably. My husband came running from his office. There were, what I thought to be, numerous spiders scattered throughout my herbs. I could barely speak, but I managed to point and say, “Spiders!”
“Calm down, calm down,” he said in the most soothing tone he could muster. “They are not spiders.”
I took a deep breath and started to relax, “They are beetles,” he explained.
I couldn’t believe I had been drinking beetles! I picked up the herbs and headed toward the back door. We were having a snowstorm, but I opened the door and threw them outside.
“What are you doing? That’s $100 worth of herbs,” my husband protested.
I turned to him and said, “We have herbs in this country and I’m going to learn about them.”
I knew deep down that the food allergies I had were just a symptom of an unidentified disease. I decided to go back to Denver for some additional testing. From different things I had read, and from the symptoms I had, I was afraid I might have something like scleroderma.
The results were given to me at the doctor’s office a few days later.
“We think you have lupus,” he said, “but we need to see if you develop any more symptoms. For now, we’re diagnosing you with chronic fatigue syndrome and fibromyalgia.” I was relieved to have some idea of what was going on.
Not long after, my husband and I took a brief summer excursion to Aspen, Colorado. I would spend most of the time in the hotel room, but was able to take a short walk during the day. My husband would go out to dinner alone and bring back something for me. It was the best I could do and I was just grateful to be there. That time in Aspen, being exposed to the high-altitude sun, ushered in the symptom that would eventually lead me to the cure for my sickness. I looked in the mirror one evening, after I had spent a few hours outside, and noticed that my face, which up until now had a very faint, rosy color across the bridge of my nose and cheeks, was now becoming more red and rash-like.
Day by day, it continued to worsen. I now realize that the Chinese doctor had seen the beginnings of that rash and that is how he knew I had lupus. All my other symptoms intensified as well. It felt like I had a bad flu that would not go away.
After returning home, I made an appointment to see a dermatologist. Just sitting in his office, even with people used to seeing rashes and skin diseases, I was getting many stares. The rash was inflamed and bright red. I was taken to an examining room and when the doctor entered the room, he took one look at me and exclaimed, “You have lupus!” This was the third time I had heard that diagnosis.
The rash that had appeared on my face would be with me daily for the next ten years. It was so noticeable that it made being in public very difficult emotionally. Once, while in a mall with my daughter, she wanted to stop by the makeup counter at Neiman Marcus. I said, “No way am I going in there!” The bright fluorescent lights made my rash look even worse. She assured me no one would say anything to me. I told her I would wait by the entrance. I stood there uncomfortably while she approached the makeup counter.
Then, from about twenty feet away, one of the makeup personnel yelled, “Excuse me, excuse me! Did you just have laser surgery done?”
“No,” I said, “I have lupus.”
“We have something for that!” she hollered back.
I was mortified. I couldn’t get out of there fast enough.
My health continued on a downhill slide. It got to where it was too painful to travel by car, so we purchased a van with a bed in it to take necessary trips.
I was getting worse and I was desperate to find answers.
Because of my beetle juice experience, I decided to take my herbal treatment into my own hands. I began by reading every book on alternative treatments that I could find. When in Denver, one of the activities that filled my time was going to a wonderful bookstore called, ‘The Tattered Cover.’ My husband would drop me off, and I would head to the herbal section, find a book I had not read, and sit in one of their oversized chairs for hours. I would purchase the books I wanted and have a supply of reading material for several months after I returned home.
One day, I entered the store and found my way to the health and herbal section. As I looked up at the dozens of books on the shelves, I realized I could not find one that I had not read.
“Now what?” I thought. I decided to contact the authors of the books that I had found most helpful. I did this by phone and sometimes by traveling to their hometowns. On one of these trips, my husband and I chartered a small plane to fly us to Santa Fe, New Mexico, to visit Daniel Gagnon. He is well known for making a line of herbal products that I found helpful.
The unpressurized airplane made me so ill that we had to find a landing site virtually in the middle of nowhere. When we finally arrived in Santa Fe and made it to the hotel room, I was too exhausted to attend the appointment I had made with Daniel. I didn’t even have enough strength to lift the receiver to call him.
I continued to learn and research until I was comfortable that I had learned all that I possibly could on the subject of herbal treatments for lupus. I felt that my herbs and diet would keep me alive long enough to find out why I was so sick. I took no pharmaceuticals during this time, whatsoever. Not even an aspirin. I didn’t want to mask the symptoms, as I felt they would eventually lead me to the cause.
My continued research led me to contact Amanda McQuaid, the author of numerous books on herbs, and someone I found not only to be highly intelligent, but also kind and empathetic. I reviewed my herbal treatment protocol with her over the phone. She asked me how I was able to establish such a protocol on my own. I told her simply, “I had to, I was dying.”
The symptom I was most anxious to get rid of was the ‘malar’ rash. Lupus means ‘wolf ’ in Latin. The doctor who named the disease thought his patients looked like they had the bite marks of a wolf. He got that right. I tried everything I could think of within the parameters of my strong belief that medicine should not be harmful in any way. “Do no harm,” is the Hippocratic Oath that all doctors take, but most modern medicine falls far short of living up to that.
One of my favorite mixtures was oatmeal and honey. It covered the rash and seemed to calm it down quite a bit. Another was an herb called goldenseal. Goldenseal is brownish green when you add moisture to it. I used to make a paste and apply this to my face. I usually had something on my face, so my family got quite used to seeing me all covered with goop.
Many times, I would forget I even had anything on. One day, the doorbell rang. I opened the door to see my five-year-old nephew. He took one look at me and his mouth dropped open. He then took a step back.
“What’s wrong, DJ?” I asked.
He stammered, “What’s on your face…throw-up?”
I laughed, “Just oatmeal.” He took a wide circle around me to enter the house.
A short while later, DJ came to visit again. This time I had the brownish-green goldenseal smeared on the rash when I answered the door.
Once again he acted horrified.
I thought, “What’s up? We’ve been through this before.”
This time he squealed, “What’s that on your face…poop?”
After ten long years of living with the worst lupus facial rash I had ever seen, one day I read something that would not only take the rash away, it would help me identify the cause of my disease and many other autoimmune diseases.
What I read was this:
“The Chinese have made a connection between the face and the stomach.”
That fascinated me; I had never tried working on my stomach to heal my facial rash. I did some research and tried something I had never tried before. Ten days later, the rash was gone. It has never returned. It wasn’t a pill, or an herb, or supplement of any kind. It was a food. Nutrients in that food gave me my first real clue as to what causes this disease. More years would pass before I got my second clue.
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