CHAPTER 1
My Story
Find Your Fire
In July 2009, I was in intensive care at a hospital. I was in a coma and very close to death. I was experiencing liver failure, had sepsis (bacterial blood infection), hepatic encephalopathy (toxins in the blood that reached my brain because my liver wasn't filtering them), high ammonia count in my blood, pneumonia, and so many things, I can't remember all of them. My skin was yellow (some said orange), my blood pressure was 70/50, and I needed immediate surgery because I was vomiting blood clots. I also desperately needed a liver transplant to stay alive, but even if there was an available liver, I couldn't be moved to University Hospital, where they did liver transplants in New Jersey. My family was told I wouldn't survive the transfer. In fact, I could have easily died right where I was. I was deteriorating at a rapid pace.
So, how did I get to that point?
I entered this world and lived my young life as a very healthy and active person. I participated in sports, including track and field, exercise, and gymnastics as a child and I had very high energy. I loved the people and friends I made doing these activities and was happy participating in physical activity. As a young adult, I married, had two wonderful daughters, worked full-time, and completed a bachelor's degree in psychology while going to night classes. I guess I spread myself a bit thin during that time, but I had the energy and determination to complete everything I needed or wanted to do.
Then something strange happened to my vitality and health. It was so sudden and shocking that I didn't know what hit me. I woke up one morning for work and could barely get out of bed. I was sick, sore, and more fatigued than I had ever felt in my life. Thinking I had the flu or a virus, I took it easy and rested, but the illness didn't go away. I did my best to go back to my regular routine, but my energy was so low, life was very difficult. This went on, and I tried getting more sleep, making sure I ate well. I did everything I could think of to restore my health.
I woke up exhausted every morning after a good night's sleep and just walked around tired all the time. I fought to stay awake and alert at my desk at work. I found a functioning new normal and managed to get my work done but pretty much collapsed when I got home. I used all my energy at my job as long as I could, but at some point, I was forced to go on disability. That step was devastating to me, because I enjoyed my career and the people I worked with.
So, of course, I saw a doctor, and this phase of life turned into many years of specialists, tests, medicines, referrals, and a medical merry-go-round nightmare. At the end of it, I didn't feel any better, and no one could pinpoint what was causing all my distress and disability. I will later go into this situation in more detail, only because it may be helpful to anyone suffering with chronic illness to see that he or she isn't crazy and that the medical community sometimes doesn't really understand what their patients are going through emotionally.
The doctors tried, but I wasn't a textbook case. They found many irregularities but nothing to explain the cause; therefore there was no cure.
Running on Empty
First, I will describe the pain and frustration of anyone in this circumstance. I reached a point that the slightest activity was a huge effort. Climbing stairs felt like a trip up Mount Everest, and walking any farther than my house to my driveway left me out of breath. I had to stop in the middle of a staircase because I couldn't make it up a full flight of stairs without having trouble breathing. If I had to go shopping, I parked in a handicapped space and barely got to the front door of the store. I had to keep resting along the way and walk very slowly. If I had to go to a store at the other end of the mall, I had to return to my car and drive to the other end, because there was no way I could walk that far. This also required a rest in my car for a while before going into the new store. I could fall asleep anywhere and anytime. My energy was so low.
Eventually making myself something to eat or taking a shower and washing my hair required so much of my energy that I had to learn energy management. If I had to go out somewhere, even for medical appointments, I made sure I didn't schedule anything the day before and after. I showered at night so I could go to bed afterward, because doing it in the morning left me no energy to go out afterward. I drove short distances and visited or did errands, but I was always pushing myself to my limits.
I somehow felt or knew that if I gave in to this illness I would never come out of it, so I fought like hell even when all I wanted to do was rest or sleep. I was even careful to keep myself looking as good as possible in my dress, hygiene, hair, and nails, because I was fighting to keep some normalcy in my life.
Everything in my body seemed to be affected, including my hair, skin, energy, mood, and then my weight. Suddenly, I started to gain weight after a life of being naturally thin. My abdomen became distended, and I was gaining a few pounds a week. I panicked, went to a diet doctor, and went on a strict diet, using special food and liquid drinks for some meals. But the weight continued piling on to the tune of about fifty pounds, and then it finally stopped. I continued with all kinds of weight-loss diets but those pounds stuck to me like glue no matter what I did. Eventually, it finally stopped and my weight stayed the same, whether I dieted or ate regularly. It was a mystery even the diet specialist I saw couldn't explain. In addition, while all this was happening, I had low-grade fevers daily for years.
In the beginning I talked to others about how I felt, because I was so confused and frustrated, and it struck me that for the first time, I couldn't control my life and health. Later, I stopped talking about my illness because I felt like all my family and friends had heard enough and I didn't want to be depressing to be with. I tried to look and act as normal as possible no matter how badly I felt. I got up every morning (some mornings were 11:00AM), got dressed, and went downstairs to my living area, even if I had to spend a good part of the day resting in a lounge chair. I refused to stay in bed. Of course, this reality was depressing, but I wouldn't let myself go there. When it all became too overwhelming, I let myself feel some self-pity but gave it a time limit of three days. I then forced myself to get back up and keep going. It wasn't an easy task at first and I will explain how I did it in my Mind chapter.
Looking back, I see that I was blessed in having natural drive and determination to get better, and these really helped me find my way. I must give credit to my parents, who promoted confidence and taught us not to give up and always fight for ourselves. I read everything I could get my hands on that even remotely sounded like my symptoms. I began to learn little pieces I would eventually put together. I joined a group called "Chronic Fatigue Syndrome" because one of my doctors told me I had CFS. It was good to interact with others who had similar symptoms but this wasn't a cure. We helped each other in small ways, but we were using coping mechanisms more than any kind of cure, treatment, or understanding. I attended a lot of meetings but also diligently searched for a medical practitioner who could figure my issues out and get me healthy again.
CHAPTER 2
Body
If you can't fly, then run. If you can't run, then walk. If you can't walk, then crawl, but by all means, keep moving.
— Martin Luther King Jr.
Symptoms
I saw at least thirty to forty doctors and health practitioners, who tried to diagnose and treat this mysterious illness. This medical merry-go-round consisted of more tests over the years than I could even count. I believe I could fill a bucket with all my blood drawn for lab work. I had so many x-rays that I thought I would glow from radiation. I also had many CAT scans of my head and abdomen; a sigmoidoscope procedure; three or four colonoscopies; several endoscopies for esophageal varices (from cirrhosis of the liver); gastrointestinal tests; echocardiograms; cardiograms; stress tests; pulmonary tests; special labs for heavy metal, endocrine, stool, parasites, fungal infections; and so forth. You get the picture. My labs were done locally and also sent to California and Smoky Mountain Labs in, I think, North Carolina or Kentucky; and one was sent to Belgium to a world-renowned endocrinologist. (His report stressed extreme adrenal fatigue and insufficiency among other endocrine issues.) I was tested beyond belief, and to this day, when I am asked to have a new test done for preventive or maintenance reasons, I cringe and recoil at the thought. My current doctor doesn't quite get this. I guess you have to live it to understand it.
There were some findings, but none alone explained all my severe symptoms. Early on, a severe underactive thyroid was diagnosed, which could account for the fatigue, but the problem was more complicated than that. Usually hypothyroid is easily controlled with a thyroid medication. I started taking the thyroid meds in small doses, working up gradually to higher doses. My thyroid reading TSH, (which is normal at 0-4) was 75 but it went up to 250 at points during my illness. Full thyroid work-up lab tests were done and there were further irregularities. I saw several endocrinologists who had never seen a TSH level that high, nowhere near it. The labs kept repeating the tests because they thought they were inaccurate.
Unfortunately, my body wouldn't tolerate the medicine doses I needed to take to keep my thyroid level normal. I suffered severe overdose symptoms, including heart palpitations, severe diarrhea, anxiety, and feeling uncomfortably warm. Some endocrinologists suggested that I keep taking higher doses with the hope that my body would eventually tolerate them. But at least twice I ended up in the hospital emergency room with tachycardia; my heartbeat was over two hundred beats per minute and wouldn't come down. I remember getting some kind of IV port in my arm; then two doctors, using two syringes, did a countdown and injected two medications at the same time into my arm. Seconds later, my body jolted so violently, I felt like they had thrown me against a brick wall. I remember yelling and jerking at the feeling that put my heartbeat back to normal.
Now I realized I had to be very careful with the medication. If I lowered the dose, the TSH went sky high again. I finally had to take a lower dose than I needed to keep me somewhat stable but never really normal. I still struggle with that today. Something in my body rejects a normal thyroid. At one point I had myxedema, a severe hypothyroid condition causing severe symptoms and facial and neck puffiness and swelling.
The labs also started to show high numbers in my glucose, cholesterol, and triglycerides. All my life those numbers were normal until this sudden illness occurred. For at least a ten-year period, my cholesterol was at 397 at my highest (normal is 200), my triglycerides were 673 (normal is less than 150) at my highest, and my glucose was 185 (normal is 90 to 100). So that was doing damage to my organs, and eventually I was diagnosed with a fatty liver disease called NASH, which stands for non alcohol steatohepatitis. I had an enlarged spleen and now liver damage. I also tested positive in different degrees for EBV (Epstein-Barr virus), CMV (cytomegalovirus), and coxsackievirus.
In addition to the low-grade fevers, my muscles were also very sore, feeling like they weren't being nourished. I tried to use them as much as I could, but with my low energy, exercise wasn't an option. I managed to do stretching exercises all the time. Even when sitting or lying down, I stretched my arms, legs, neck, and shoulders. If I didn't stretch the muscle became tight and uncomfortable. But if I forced myself to use them more, I became even more exhausted. In addition, my vision, which had always been twenty-twenty, deteriorated, and I needed strong prescription glasses for both close and distance vision. I couldn't see well at all without them.
One day my doctor called and told me to go to the hospital for a blood transfusion. He had just received my labs and my red blood count was dangerously low. I then had to go to his office two or three times a week to get Procrit shots. Procrit is used a lot for patients whose blood count drops dangerously low from chemotherapy. I kept getting the injections until my blood count returned to normal. No reason could be found for that occurrence. At this point, I was told I had autoimmune disease, which seemed to be attacking my body. I even had something called ascites, which is a backup of fluid in the abdomen, that had to be drained periodically.
I felt miserable, and doctors couldn't seem to put it all together. The infectious disease physicians asked if I had traveled out of the country in the past year. The only place I had been was a vacation at a Caribbean island. Upon returning home from that vacation my husband came down with a fatigue illness that lasted about six months but he recovered. At that point, I became ill with my mysterious illness but I did not recover. I can't be sure if it was related to the trip or coincidence. I do recall suffering mosquito bites there, but nothing unusual. No relationship was found by the medical professionals.
They doctors were treating symptoms, but without getting to the source of it all, there was no real relief and my condition kept getting worse. I saw the following specialists:
• Internal Medicine doctors
• Endocrinologists
• Gastroenterologists
• Infectious Disease Specialists
• Chiropractors
• Acupuncturists
• Holistic Practitioners
• Nutritionists
• Functional Medicine doctors
• PhD Clinical Nutritionist
• Naturopaths
• Herbalists
• Homeopathic doctors
• Hormone specialty physicians
I also went to clinics for holistic, energy therapy, and Reiki, kinesiology; and eventually I did PEMF treatment. (Pulsating Electric Magnetic Field) Sometimes I did several in each category.
Treatments
At some point a few years into the illness, I found Dr. A., who was recommended because he used very different methods, both traditional and holistic. He was originally from Pakistan and had gone to medical school there. His diagnoses and treatments were much more integrated. When these alternative doctors saw an abnormality, they looked for a cause rather than giving me a drug to treat the symptoms. I later found that the doctors I saw who were from foreign countries and had studied there practiced differently from doctors who attended medical school in this country. Their approach was more integrated, and they used fewer prescription drugs, leaning to more natural cures. I saw doctors who studied in Russia, Pakistan, India, and maybe more places I can't remember. This isn't a criticism, just an observation based on my experience.
Dr. A. took a long history (about an hour) and reviewed my large stack of medical records. He put me on a strict diet after discovering some food intolerances. (I had no known food allergies but apparently had milder intolerances). This really made a huge difference. I was on Tagamet an (antacid drug) for many years and couldn't go a day without it due to severe stomach cramps and diarrhea after eating. But less than two weeks into this food program, I no longer needed the drug and haven't taken it since. That was twenty years ago. After being on this food program about two years, I was able to bring some foods back into my diet with no ill effects as long as I ate them in moderation. I still stay away from some, including dairy, sugar, wheat, and yeast. The stomach inflammation is much, much better.
Dr. A. seemed to be eliminating all antagonists. I was allergy tested and received allergy shots (mostly environmental but nothing super serious). I took one round of an anti-fungal drug to rule out fungal infection. I had already been on antibiotics from the infectious disease specialist. Then Dr. A put me on the food program mentioned above and supplements to build my immune system. I also went for IV (intravenous) treatments two times per week for about a year. The IVs were mega doses of vitamins, mostly vitamin C, which took about two hours to administer each time. There were other patients in the IV room, and I discovered from conversations that there were many chronic illnesses out there and so many people trying to find cures.
