By Courtney G. Smith
Imagine being at the hottest, wildest, most exciting party of your life. You’re on the dance floor getting your groove on and then all of a sudden the music stops abruptly. The DJ gets on the microphone to announce that you and only you must leave the building. And you are never to return to enjoy such an exhilarating moment.
That is exactly how I felt in April 2001 when I was diagnosed with the autoimmune disease Myasthenia Gravis (MG), which causes extreme muscle weakness. My other symptoms included slurred speech, difficulty swallowing, and double vision. Sometimes my hands were so weak I couldn’t button my shirt; my mom would literally have to dress me. There are approximately 70,000 affected by the condition in the United States. As a rare disease, it is frequently under-diagnosed.
You hear people say that during certain moments time seems to stop. I always thought this was such a cliché, but when the doctor told me I had MG, that there was no cure, and that I would have to be on medication for the rest of my life, time literally stood still. I could not process what she had just told me.
I was a few weeks away from heading to New Orleans to celebrate my 23rdbirthday. Once the moment of revelation was over, I shed a few tears, took the prescription my doctor had written for the meds I’d supposedly be on for the rest of my life, grabbed my purse, and smiled as I left the exam room.
I remember she asked if I had any questions. I just looked at her and replied that I was on my way to party in New Orleans for my birthday. She told me not to party too hard to which I laughed. Little did I know that this laughter would come back to surface as ultimately the theme of my life.
I’ve taken many cocktails to get through my diagnosis with MG. My first cocktail came in the form of pills. I was initially placed on two different medications: prednisone, a steroid, and mestinon, which stimulates or mimicks the parasympathetic nervous system (PSNS). Initially, the prednisone helped tremendously with the double vision, but it never completely got rid of the weakness in my face and hands.
My doctor tried to put me on a third medication after an experimental surgery to force the MG into remission was unsuccessful. The surgery is called a thymectomy. Since I’m pretty sure this word is foreign to most, as it should be, I’ll explain: A thymectomy is when a person’s thymus gland is surgically removed. Now for those who slept through biology, present company included, the thymus gland sits right behind the sternum which is the bone that sits in the middle of your chest.
In order for my thymus gland to be removed, my sternum had to be cut open. My surgery was scheduled for September 11, 2001. I went into surgery thinking that the one plane crash was just a horrifying, tragic accident. I came out of surgery to learn that a second plane had hit the World Trade Center and that the United States was under attack.
Years later I would share the date of my surgery with someone who told me I never should have had surgery on that day because there was just too much bad karma in the atmosphere. I honestly believed that, because after surgery my symptoms did not get better. They actually got worse. I also discovered that I could only mentally handle taking two medications at the same time.
When my doctor tried to put me on a third, I thought I was okay with the idea until I took the pill. I began crying and realized at that moment that my cocktail of medications could only consist of two at any given time. This discovery led me to my next cocktail.
One Friday morning in 2003 I opened up the phone book, yes the phone book, and began looking for an acupuncturist in Chicago. I didn’t know much about acupuncture and knew of no one who had actually tried it, but what I did have was a gut feeling that trying an alternative therapy would yield results that had previously eluded me.
I told myself, whichever doctor could see me that same day would be the doctor I’d go to. So at 5 p.m. that evening I went to see Dr. Yong Gao Wang. I explained to him about MG and what my experience had been. He nodded his head and asked to see my tongue. Then he checked my pulse and said he could treat me. Dr. Wang sent me home with a cocktail of TCM (Traditional Chinese Medicine) herbs.
The little black balls were so foreign to me, but if they helped the MG then I was willing to take them as instructed. One of the formulas, called Gui Pi Wan, works to build the blood and Qi of the body from a TCM perspective. Three months later I began to see drastic improvements and felt just like I did before having symptoms of MG. Dr. Wang called his cocktail of herbs my homework. My homework had me feeling like my old self again after two years of having symptoms in addition to the awful fatigue I experienced after surgery.
But once I felt better I stopped continuing treatments. I figured the $90 dollars I shelled out each week to see him could be better spent shopping. Hey what can I say, I was 25. But I wasn’t tooyoung and dumb, though. I figured out that I could get more for my money if I began seeing a holistic doctor.
Someone had told me about a Dr. Jifunza Wright who was both an MD and a holistic doctor. The main reason I wanted to see her was to lose the 20 lbs I had gained from the prednisone. Most of my life my weight teetered between 105 and 110. So gaining 20 lbs wasn’t a big deal, but gaining 20 prednisone pounds was a huge deal. That weight doesn’t feel right no matter where it lands. It was all in my thighs and butt which was great, but to me it felt like water weight, which was just uncomfortable.
Dr. Wright put me on a diet which really wasn’t a diet but more of a lifestyle change, and gave me a cocktail of supplements to take. Her philosophy was that if a food could not be grown or picked, then it should not be eaten.
My old diet literally consisted of everything. Because I was petite I never thought about food until I was put on prednisone. I ate ribs, chicken, beef, and all sorts of sweets. Since 2004 the only meat I eat is fish. I rarely consume dairy and I make sure I drink at least 64 ounces of alkaline water a day. Sometimes I do cheat with the sweets because dessert is my favorite part of a meal.
Dr. Wright placed me on calcium, magnesium, and vitamin D since the prednisone causes bone loss. I still consume all three daily. I also take powdered chlorella, liquid chlorophyll, blackstrap molasses and a natural iron supplement daily for anemia.
I lost the weight in three months and felt great. Since I lost the weight I figured I had gained all the knowledge I needed from Dr. Wright and could once again go back to enjoying so much of my life.
In September 2006 at age 28, I got the chance to share cocktails with my friends to toast to the premiere of my award-winning documentary Beauty Does Lie: The Untold Stories of Autoimmune Diseases.
I produced Beauty Does Lie to raise the awareness of autoimmune diseases and to give women with autoimmune diseases a voice. So often people with autoimmune diseases are undiagnosed or misdiagnosed because their outer appearances look completely healthy.
When I was in the hospital with a blood clot in my neck and a needle in my arm, receiving three blood transfusions, I can remember nurses telling me how good I looked for my age. There I was, unsure of whether or not I was going to hemorrhage to death, but still receiving wonderful compliments about my looks.
Producing Beauty Does Lie allowed me to share a few more celebration cocktails with my friends. In 2007 it was picked up for distribution and the following year it received a National Health Information Award. Not too bad for a first-time producer who made a film from the heart.
After producing Beauty Does Lie my life and mind opened up to so many things. I began receiving massage therapy and Reiki. My Reiki Master Angelana Celeste is now one of my friends, whose house I bike over to share a few glasses of wine. After years of spending time away from Dr. Wang I was recently reunited with him after experiencing double vision (one of the wicked symptoms of MG) toward the end of a stressful job I never should have taken to begin with.
Today, I am now a spokesperson for the American Autoimmune Related Diseases Association (AARDA)! Who would have thought 12 years ago when time stopped for that one dreadful moment, that I’d now be a spokesperson for a national organization?
The various cocktails I’ve had in life have sometimes brought me pain, but the joyful cocktails have ultimately triumphed over the sorrow. And I am happy to report that I was let back into that wonderful, magnificent party I thought MG had permanently kept me from. Salud!
Courtney G. Smith is the award-winning producer of the documentary Beauty Does Lie: The Untold Stories of Autoimmune Diseases. She is also a spokesperson for the American Autoimmune Related Diseases Association (AARDA). Courtney is extremely proud of her accomplishments, but ultimately she aspires to be a beach anthropologist, aka beach bum. Check out her website.
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