Autoimmune disease can affect almost any part of the body. Examples are Hashimoto's Thyroiditis and Graves Disease which both affect the Thyroid while Rheumatoid Arthritis affects the joints. Some autoimmune diseases can affect many parts of the body at once. Symptoms can be debilitating making you much more dependant on other people and you sometimes feel that you’re a burden on your friends and family. Simple tasks become difficult or impossible, and normal employment literally becomes a thing of the past.
January 2005 - I am 38 years old. That in itself is nothing short of a miracle. I have been struggling with a rare autoimmune disease for nearly 20 years. Here is a snapshot of my journey……
Born the middle child of seven, and the older sister of a retarded emotionally disturbed brother, I knew early on that I must have discipline in my life to maintain a sense of peace in a chaotic world. I studied Jazz, Ballet, and Tap, all through middle school and high school. The summer before my junior year, I lived in Chicago with another Dancer and studied with Gus Giordano. While there, being young and brave, I choreographed a Jazz piece after seeing a flyer for auditions, some how found my way to this place, despite being terrified of the city, and auditioned for the “fame” school in Chicago. I didn’t give it any further thought, but continued to study at Gus’s studio six classes a day.
When I was Dancing, I thought of nothing else. It was simply me, the music, the rhythm, and my wild expressive spirit, swiping the oxygen from the air with every movement. I found my “center”, the place where balance lives inside your soul, and no one could take that away from me.
You can imagine my surprise and dismay when my parents received an acceptance letter from the school in Chicago. I failed to mention that I had auditioned; they failed to share my enthusiasm. They had no intention of letting their 16 year old leave the state while still in high school.
I returned to my home town studio in Newton Ma, and was chosen to demonstrate for many of the younger beginner classes and became sort of a dancing teacher’s aid. I also taught creative movement for the community schools. I became very bored very quickly, and the pressure for college and career choices was apron me before I knew it. I was told becoming a dancer was not a practical thing to do. I would have to choose a field of study that would enable me to gain independence, career, and focus on a “real job”. This was the beginning of a long confused journey, where I became completely lost in my own body.
Following a procedure to have impacted wisdom teeth removed, I got Hepatitis “B” from a dirty dentist needle. From there, my immune system became off balance. It was trying so hard to fight the hepatitis; it did not know when to stop. My immune system could no longer recognize “good cells” from “bad cells”, and began attacking my body from the inside out.
One year following college graduation, I was barely making it. I had still maintained a strong discipline in athletics, Crew, Swimming, Running, Aerobics and water aerobics. However, my body was not responding to the workouts in a normal way. I would swell up, but I did not know that it was inflammation. I thought I was getting fat. I thought I had to be more disciplined and work harder and eat smarter, but nothing seemed to work.
I began having difficulty with the simplest things. I could not lift the hair brush to do my hair. I could barely get in and out of chairs. Stairs became a full blown workout complete with sweat and tears. I could not swallow solid foods without the aid of fluid. I had no clue what was happening to me. Still I thought it was me. I thought I had to try harder. But the day came where no amount of effort would prevail. I could not get up out of bed. I rolled myself off the bed and crawled to the phone. My mother took me to the emergency room where blood was taken and I was told I probably had mononucleosis and sent home.
I had to stay on my parents couch because I could not even dress myself. Within a few days I knew this was not mono. After seeing my primary care Physician, he noticed a distinct rash on my face, chest and hands. He called the hospital and ordered several additional tests with the blood they had on file. Soon we learned that there is a muscle enzyme called CPK that was out of whack. A normal CPK count is about 50-60. Mine was in the thousands. He made the initial diagnosis of Dermatomyocitis. It is a rare autoimmune disease that affects only one in every million. I was told it was a connective tissue disease that was attacking my skeletal muscles and my vascular system. Later they also diagnosed me with Polyarteritis-Nodosa or PAN, another autoimmune disorder.
Within a few more days I was brought to the hospital where things declined rapidly over the course of three weeks. My cpk elevated to 8000. What had been 120LB shapely feminine frame grew to 180Lb blob of a body I no longer recognized. I completely lost the ability to swallow. I could not even hold my own head up off my shoulders. My neck muscles were too weak. I was padded with towels and pillows to keep my body supported. I began to choke on my own saliva. I could not urinate, or perform any muscle actions. My face became “flat” from lack of muscle movement and my voice box, being composed of muscle tissue was inaudible.
I did not know it then, but I would not escape that place for another year. My apartment would be rented out from under me, and my car would be sold. I was replaced at work within days.
Since the doctors did not know exactly how to go about treating me, an NG Tube was run up my nose and down the back of my throat into my stomach for feeding. It gagged me constantly. A catheter was put in for urine output. A suction tube was used every 5 minutes or so to keep me from choking on my own saliva and a morphine pump was connected to the IV for pain management. I did not know it then but it would be six months before I would become stable enough for them to put in a stomach tube, and several more before they finally put in a “Central Line” avoiding the digestive tract altogether, providing nutrition solely through the veins. They had to do this because by then it had become a multi-system disorder and other autoimmune diseases had set in. After an arteriogram, it became evident that my abdominal region was full of aneurysms and I could not digest any food.
The pain was excruciating. No one could touch me. They had to put boards on the end of the bed to hold the sheets up because the pressure of the covers was too painful. Soon I had tubes everywhere, and doctors from all over visiting to witness the strange one in a million phenomena.
Having little to no familiarity with the disease, the doctors did not know the most efficient way to deal with it. Since I was at a teaching hospital I was the proverbial “rat” for all to poke, experiment with, and observe. Suggestions for medications and treatments came from Interns, visiting Doctors, even Pharmaceutical sales Reps. Anyone and everyone. Although side affects from all these chemical cocktails where mentioned, they were not a priority because the condition had become “life threatening. However, negative drug reactions would soon prove to be an even greater challenge than the disease itself. After receiving massive doses of IV steroids, Solumedrol, (IV Prednizone), Immunosuppressive therapy, Immunogamagobulin, chemotherapy, (IV Cytoxan), and Methotrexate, I became psychotic. It is one thing to loose your bodily functions, but entirely another to loose your mind. This was perhaps the greatest challenge of all.
It was a year of trial and error. I was no longer the captain of my vessel. I could hardly recognize my own ship, and the disease had taken over the helm. I was a prisoner in my own body and there was no way of escaping the treacherous waters ahead. My usual positive attitude was drowning in a chemical sea of ambiguity. I could feel my spirit leaking from my physical structure. There were terrible hallucinations, and several attempts to de-tube myself. I was bruised from my biceps to my wrists from daily blood draws. Most of my veins collapsed and they had to use my fingers for IVs.
After several months, they began to identify what the body would respond to and what just didn’t work. They began to tame the swelling with more specific targeted cocktails. Then there was a breakthrough. Two days of immunogamagobulin IV, and something popped. All the poisonous fluid my cells were bathing in flowed to the attention of this drug.
They had to keep the catheter in a bucket because the Blood colored fluid was flowing out of me by the gallons, at a pace that was too fast for the nurses to attend to. I must have lost forty to fifty LBS. of this strange fluid within three days. Strangely, as the fluid flowed out, it seemed to make space for some of my spirit to come back in. Or else I just reached a point where I was able to sense it again. Soon after, the enclosed video was taken.
Within a couple of months I was transferred to Spaulding Rehabilitation Hospital in Boston. I knew no one. I could not speak. The “rules” were different, but I had no way to switch gears. I had grown accustom to the schedule in the hospital, the aids, the nurses, the medication schedule. Despite how messed up I was I knew all 17 medications and when they where to be administered. I had grown used to hitting the morphine pump every ten minutes. For several months my parents split up the 24 hour day and took turns staying overnight to hit the morphine pump for me, and suction the saliva so I could get some sleep with minimal pain or choking. But now the “rules” had changed. The morphine pump was discontinued, and I was told to ask for percasett. The problem was I was not speaking. I was psychotic. I was also allergic to the percasett. I went cold turkey and sweat it out for the next three weeks, loosing 14 lbs, of sweat and detoxification.
The pain was so intolerable; I retreated into the fetal position. My hands curled into fists, shoulders clenched, legs, arms and neck bent, my stomach contracted. I had daily visits with a Speech therapist who used metal tools soaked in ice to gag me and instigate the swallowing muscles to perform. The physical therapy and occupational therapy was excruciating, and I often threw up in the middle of the sessions.
One day, I had had it. Somehow I managed to get myself into a wheelchair, push with my feet down the hall, down several flights on the elevator. I got outside and tried like hell to hurl myself over the railing abutting the Charles River into the water. I thought if I could do that there would be no way for my muscles to keep me afloat, and I would drown down there in the slimy waters. No such luck. A nurse spotted me struggling at the railing, and I was placed under 24 Hr. surveillance and labeled a “suicidal patient”.
Then things got worse for me. The aids would wheel me on this donut chair into this huge tile room with all these shower heads in it. They would squirt tepid water up under the chair and randomly at me. This was called a shower. Then they would leave me in there with a towel no bigger than a dishcloth, naked and freezing cold. I sat there with my head bobbed on my collar bone, forcing my eyeballs up toward my forehead to see. I cried like a baby, but no one would come. It seemed like hours before anyone would come. I would be blue from the cold, yet burning with anger and despair.
Finally a stomach tube was surgically implanted. I was soon discharged and placed in outpatient Physical therapy, Occupational therapy, Speech therapy and out patient chemotherapy with immunosuppressive maintenance drug therapy.
Only a few months passed, and I had to be readmitted because the pain in my abdominal region was so bad. I could not digest anything. While the muscles were starting to come back, the vasculitis was running full course ahead, taking its’ toll. I had to have a Central line with three ports surgically implanted just under my left collar bone. This way there was a port for receiving meds directly into the veins, a port for nutrition, and a port for blood draws. Why they did not try this to begin with will never cease to amaze me.
It would take months of a custom designed series of casts to train my body to unfold. I slept with my arms in these contraptions that forced my fists open, and my elbows to straighten. Every few weeks they would make new ones that stretched me further. Suffice it to say, it was a long grueling experience.
It was about this time, I received a phone call telling me very matter of fact, that I was post menopausal, and would never be able to have children. I was bald, skinny, with flesh hanging from my bones. I had started to die, before I ever got the chance to truly blossom. I felt like an un-blossomed rose, a dead bud with only thorns to show.
I continued all of the therapies outpatient for three years. It took another two before I was once again in command of my body. For the next 8 years I was on a quest for knowledge. I read everything I could get my hands on regarding health and alternative therapies. I struggled with the cognitive issues of years of steroid use.
I had no job to go back to, although I did try to return to the field several times, selling mortgages was not the “stress free” career the doctor ordered. I tried so many different things in an attempt to make a living, while managing chronic illness. It was years of tiny accomplishments, and big failures.
By 1996 I was working pretty much full time, but barely making it. I was going blind from the cataracts in my eyes caused by the constant steroid use. My cousin took me to a Red sox game, and was concerned when I did not react to any of the plays he could clearly see from our front row seats. The next week he took me to an ophthalmologist who promptly told us although I still had some vision; I was legally blind from the cataracts and would require immediate surgery. Since he was a friend of my cousins, he allowed me to keep my license under the promise that I only go directly to work, and directly home.
Within a few weeks I had a surgery known as complete phacoemulsification. This is when they cut out the lens that is covered with cataracts and replace it with a silicon lens. You have to stay awake for the procedure and they can only do one eye at a time. This leaves you lopsided for a month which makes everything that much more difficult. You have no depth perception.
Soon after my surgery my sister in Florida lost her husband. She was terribly alone, and I was dying for a break. I left and went to live with her. There I enrolled in Massage therapy school. I learned more about my body and myself than I did the entire time in College. I became licensed and went on to study complete decongestive physiotherapy with Doctor Robert Learner. CDP involves manual lymph drainage, nutrition, exercise, and the use of compression garments to aid people with lymph edema.
My sister remarried and moved back to the Boston area. I joined a Holistic clinic as an LMT. Here I began practicing Yoga and participated in Detoxification, fasting, juicing and colonics. Although I went through several “healing crisis” and experienced some relief from being clogged with chemicals, I still was not well enough to make a living. I moved back to my parent’s house when I just couldn’t make it on my own.
The September 11th happened. I was devastated. I felt every cell in my body melt as I watched the towers come down. By New Years I had a full blown relapse and was back in the hospital. My CPK once again in the thousands, my body swelling out of control, and my ability to swallow slipping away once again. But this time things were different. This time I was different. I had an arsenal of weapons in my war chest. I had a brand new tool box filled with tools for managing illness. All my studying and searching was pulled into action. I knew how to meditate, and stretch the pain out of my body. I remembered to breathe through the pain. I remained able to make prudent decisions regarding drug therapies. I still knew more about the disease than the staff, and it was their turn to listen to me. I had a living will. There would be no tubes.
This time I was out of the hospital in 14 days. I coordinated home care for PT’s OT’s and Speech therapists. Since I knew what was happening, I was treated early enough to arrest total loss of swallowing. With the guidance of a very patient speech therapist I learned how to manipulate my neck, chin, and breathe to get purred foods down. I still could not do liquids or solids, for they would either come out my nose or choke me. But I was elated not to have any tubes. I learned to love squished canned peaches and cottage cheese, and “thick it” in just about everything to get the foods to a consistency where I would not choke.
This time I did yoga in bed, preventing my body from curling into the fetal position. I was bedridden for only 5 months. I started pool therapy immediately after, and did yoga in the pool. I was able to get a job selling residential mortgages 5 months later, but had to let it go after only a few months. It seems the disease was following the same course as it did the first time, but on a much smaller scale. Once again, although my muscles were improving, the vasculitis was out of control. I would go through 9 outpatient IV chemotherapy treatments. One treatment every six weeks. Barely enough time to get back on my feet before they would hit me with it again.
After six treatments I was starting to come around, and my sister dragged my tired ass to a Bikram class. It was very hard at the beginning. My sister would pick me up and drop me off. The first month I would shake furiously with muscle twitches, and break out in rashes. By the third month I was driving there on my own. At this point the doctor decided to discontinue the chemotherapy for a while to give my bone marrow a chance to recover.
Now it has been just over six months and I am like a new person. There has been no mention of anymore chemotherapy. The doctors and I have decided to lower the steroids as well. I am closer than ever to being completely drug free. I have no pain on the days I go to Practice. My teacher Kelley Mara has given me the gift of a free month which has enabled me to go much deeper in my practice. For the first time in 20 years I am not constipated. I have more energy than ever. I am starting to actually feel that I may be able to have a full life and blossom after all. I have been in emergency mode just trying to survive for so long. I had long since given up my dreams of being a Dancer/teacher. Now I am starting to dream again.
I want to get off all these drugs once and for all. My whole adult life has been centered on managing chronic illness. I believe participating in a Bikram certification program would help me cross the bridge to total wellness. I know in my heart I can do it if given the opportunity.
I want to teach other people how to help and heal themselves. I feel my unique experiences combined with my skills in massage and lymphatic drainage would make me an excellent teacher because I have walked the journey. I know what it is like to loose everything, body, mind and spirit. I know how difficult it is to come back. But I also know that it is possible.