Friday, August 15, 2014
My Battle with CFIDS
[This was originally published in September of 2013 re: the history of my illness. ]
Until pretty recently I did not publicly discuss the dirty secret of my disability, because thanks to holistic medicine, my disease had been in remission for 15 years and I believed it was "cured," although mainstream doctors said that was impossible. Also, I did not want to be thought of as "disabled" and I did not perceive myself that way.
In the spring of 2013 I had a relapse of the disease from which I am still recovering as of September. This has had a profound effect on my lifestyle, especially my ability to make a living, and it inevitably came up in conversations, e.g., "If you're broke, why don't you just go out and get a regular job?!" [assuming such jobs were even available in this town, which is dubious]. When I replied that my health won't permit it, naturally my friends asked "Why, what is wrong with you?" Unless you happened to notice the dark circles under my eyes, you would never know I was sick. I appear quite healthy, indeed ripped, thanks to yoga, pilates and a lifetime of athletic hobbies and living on a farm. Even in my relapsed condition I am in better shape than most people my age, significantly stronger than most women and probably than some men; on a good day, that is, when I can throw around 70-pound hay bales and carry a 5-gallon water bucket in each hand through deep mud. On a bad day, it's hard to get out of bed, and a shower is a major undertaking.
Now that everyone is asking, I decided to go ahead and be open about it. Rather than repeat myself with every inquiry, I will refer people to this blog post.
What is CFIDS? "Chronic Fatigue Immune Dysfunction Syndrome." It is a viral (not psychological) illness for which the specific causative virus has yet to be found. Over the years the culprit has been named as polio (which I suspected), Epstein-Barr, Coxsackievirus (my immunologist's favorite), HHV-6 and even XMRV (recently disproven). Nobody is sure, but my personal theory is that this immune dysfunction can be triggered by a number of viral agents, including natural diseases and live-virus vaccines. The earliest cases were regarded to be "atypical polio," and in Europe the disease is called, "myalgic encephalomyelitis." In modern America it was nick-named "The Yuppie Flu" and largely dismissed as a mental disorder or sheer laziness, "Shirker Syndrome." While immunologists have long suspected a viral cause, only in recent years has the mainstream begun to acknowledge CFIDS as a "real disease." The symptoms include crushing fatigue, muscle pain and "brain fog," loss of balance or coordination, swollen lymph nodes and extreme susceptibility to contagious diseases like a cold or flu. You can read more about all this at The National CFIDS Foundation.
Some "alternative medicine" proponents like to say that CFIDS is caused by poor diet, food allergies, environmental toxins, lack of exercise, depression or negative attitude. I do not deny that this may be possible for some patients, since all of these things can contribute to immune dysfunction. But in my own case it seems unlikely. Here is my personal story.
I was a very healthy child, rarely got sick even when illnesses went around the school. I never had the "usual childhood diseases." My family had a reasonably healthy diet (for Americans in the 1960s) and a very active lifestyle. I was raised with swimming, surfing, hiking in the mountains, horseback riding, roller skating, ballet, gymnastics, etc. I was frequently bathed in dirt, sweat and sunshine. At age 12 I became a strict vegetarian and soon thereafter began my lifelong practice of meditation and yoga. By age 25 I was doing yoga a couple of hours a day and when I was involved in a near-fatal auto accident in which my intestines were torn when squished against my spine by the seatbelt, I seemingly had an amazing recovery and was out of bed doing yoga in the hospital, standing on one leg with my foot above my head, much to the nurse's alarm! I appeared very strong at that time, but that intestinal rupture may have been the source of the virus (whether polio, from the live virus vaccine, or naturally occurring Coxsackievirus) which a few years later resulted in CFIDS.
Having bounced back from the auto accident, I resumed my intensive daily yoga practice at morning, noon and night, and on the weekends hiked in the mountains, rode horses and swam in the Pacific Ocean without a wetsuit. I was essentially the poster girl for a healthy lifestyle. The one area where I struggled was with lack of sleep, which my immunologist felt was the major contributing factor in the development of my illness. I had never been a morning person, and working 8-to-5 was difficult for me. No matter what time I went to bed, I couldn't fall asleep before midnight and had a very hard time getting up at 5:30 to be at work by 8:00. I hated my low-paying clerical office job, would have preferred to do something "meaningful," but it was just a way to pay the bills so I could go home and meditate and have fun on the weekends.
In the summer of 1991 I suddenly came down with a flu-like illness which struck me down for a whole week. I had fever, swollen lymph nodes, sore throat, nausea, fatigue and extreme body aches and could barely get out of bed. I went back to work the next week and started to feel somewhat better, but never quite recovered to my normal level of energy. Two months later I had the same illness again and lost more work, but couldn't really afford to take off any more because I had already used up my allotted sick days. My landlord, who was a doctor and whose son had HIV, asked me about my symptoms and seemed very worried. People at work also gave me worried glances and whispered that I looked like "an old woman" clinging to the railing to limp up the flight of stairs to my office. I somewhat recovered from the weakness, but my immune system did not. Previously the person who never got sick, now I caught every cold or flu that went around the office. If somebody sneezed across the room I would catch their cold, and soon it would settle in my chest and I had pneumonia.
I began to miss more work and in early 1992 had already used up all of my allotted sick days (I think there were 7) as well as my vacation days. I went to the doctor with my latest bout of pneumonia and said, "Doc, there is something really wrong with me. I never used to get sick like this." He interrogated me at great length and took a bunch of blood. HIV was the first thing they tested for, and fortunately it was negative. I got more antibiotics and went back to work although I was dragging my body along and could barely concentrate on my job due to pain, fatigue and brain fog. After a couple more weeks I was very sick and made another appointment with the doctor. He gave me more antibiotics for the persistent pneumonia and said, "You have Chronic Fatigue Syndrome, more specifically, the Immune Dysfunction variety."
"What?!" I was annoyed, and protested, "That's not a real disease! That's like the Yuppie Flu, it's a mental thing!"
The doctor's expression was very compassionate and he said, "No, unfortunately it is all too real, and it is physical, not mental. It is a serious illness."
I asked, "Ok, so what is the treatment?"
The doctor replied, "There is no treatment. But, our bodies were designed to heal themselves, given the proper support. You're going to have to make some changes. You can't work anymore. You must rest. I am going to put you on Disability."
When I returned to the office that afternoon, my boss told me, "You have used up all of your sick days and we need employees who can be here and work consistently. I am sorry, but you are fired." I thought this was really unfair, especially since one of my coworkers had recently been given 3 months of paid leave for voluntarily having a baby, and I had been covering a lot of her work, and I also often covered for other coworkers when they had to take off for school events or to care for sick children. But, they couldn't fire me, because I was legally Disabled. I handed her the paperwork from the doctor and she was quite taken aback and asked, "How long are you Disabled for?" I told her the doctor said it might be permanent. One of my know-it-all coworkers snapped at me, "Your doctor is a f*ing quack! If he can't cure you, find one that can." I replied, "There is no cure." She, a layperson with zero medical knowledge and having, like most laypeople, an unwarranted faith in medicine, responded, "Oh, you'd be surprised what the doctors can do these days!" Under my breath I said, "and you are a dumb bitch," and left my job.
But I didn't want to be Disabled. I couldn't accept that. So while staying with friends, after a couple of months of much-needed bedrest, I began doing gentle yoga and taking walks again. I tried to do ballet exercises but my legs turned to rubber after a few minutes. The doctor had told me even if I regained my strength I would not be able to work in an office or with the public again due to my immune deficiency, so I would need a job I could do at home. He recommended medical transcription, since I already had a fair amount of medical knowledge and had studied pharmacology on my own as a "hobby" for years. I found a correspondence school (this was before the age of the internet) and passed the coursework with flying colors, had a brief internship, and within a year was certified as a medical transcriptionist. I was still weak and hurting but eager to make a living again, and in 1993 I got a job making $35/hour. I only had to work part-time in order to rent the simple but beautiful studio apartment on the mountainside in Santa Barbara overlooking the ocean. It was lovely!
But, it didn't last. Even 4 hours a day of typing proved to be too much. My condition continued to deteriorate. The mainstream doctors could not do anything except scold me for working, give me antibiotics for the frequent "opportunistic infections," and give me Tylenol No. 3 with codeine for the constant pain. The codeine helped the most. By taking just 2 a day I was able to almost function like a normal person. When the DEA changed their policy so that young people with chronic pain could no longer be prescribed narcotics, my doctor had to cut off my prescription. That is when my condition really worsened. The muscles in my neck, shoulders and arms had painful spasms and my fingers would no longer type what my brain was telling them to type. Even brushing my teeth was difficult.
I went back to the doctor and he said, "You must understand that you are very sick. You will never work again. I am filing SSDI for you. Don't worry, you will certainly be approved." My family urged me to move back to Florida to be near them, as they were sure I would not be able to afford living on SSDI in California. What nobody expected, and came as a huge shock, is that my SSDI was rejected after I moved to Florida! Although SSDI is a federal program, each of the states is allowed to use their own criteria as to who will and won't be covered. I hired a lawyer who was an expert in the field and went through all 3 grueling and exhausting phases of the process, with the endless paperwork, only to have my final appeal denied, because CFIDS was "not a covered illness" in Florida. They told me, "You can work at home as a telemarketer." I didn't feel so bad after I learned about a case right before mine, an 18-year-old quadriplegic, who had also been turned down. Because he had figured out a way to type by holding a pencil in his mouth and using it to press the keys, the State decided that he was not disabled. Florida is a strange place.
I found a good doctor who was recommended by the CFIDS Association. He was very nice but could not do anything to help me other than prescribe the frequent antibiotics. He did recommend antihistamines because I seemed to be allergic to molds and pollen in Florida which caused sinus drainage which could contribute to pneumonia. When the antihistamines weren't effective enough they added nasal steroids. I later learned that these medications actually made my condition worse.
My original faith in mainstream medicine, which I shared with most scientifically minded laypeople, had begun to be eroded both by my own personal experience as a patient, and more importantly, by my work in medicine. But that is another story for another blog post. I undertook a serious study of holistic and herbal medicine, which I had previously regarded as completely bogus. Like many people who believe in so-called "evidence-based medicine," I had declared, "This 'natural' crap doesn't work! If it did, all the doctors would be prescribing it." But I was very sick and had nothing to lose at that point, so when one of my friends suggested I investigate herbal remedies, I figured what the heck, I'll give it a try. And it worked. It worked so well that by 1997 my disease was significantly in remission. The doctors were amazed. They couldn't believe it. They asked, "What did you do?!" When I told them I was using herbal remedies they said, "But that stuff doesn't work...?"
In light of my remission, the doctors allowed me to return to work, but only part-time, not with the public, and they said I would need to hire a maid because I wouldn't be able to work part-time and still clean house. Well, they were mostly right but I could not afford a maid. I worked about 35 hours a week, I rode horses and I surfed on the weekends, and my house was a mess.
When I moved to Panama City in 2001 I found that transcription paid much less and I had to work many more hours to make ends meet. I continued my study of holistic medicine. I felt strong, and eventually took on a second job, but I had to be careful to avoid over-exertion and get enough sleep, or I would pay for it the next day. I even ventured out to sing at karaoke and managed to mostly avoid getting sick. I opened a yoga studio and taught yoga and pilates. Nobody would ever know that I had CFIDS. In 2010 I had the opportunity to study the Gerson Method, which allowed me to tweak my holistic regimen even further and by 2011 I was convinced I was completely cured.
In 2012 my mobile home had leaking pipes which led to a rat infestation, a fire, a flood and black mold. By the spring of 2013 I had a sudden relapse in my condition. I could no longer type. I was exhausted, in pain, and my immune system stopped working and I got all kinds of opportunistic infections. I learned that this was a result of the black mold (a powerful immunosuppressant). I moved out of that place in June and began to feel better. In July my stepchildren came to visit and my stepdaughter, who was frequently ill, told me that she had had strep throat a couple of weeks previously but had been treated with antibiotics and had completely recovered. To my surprise, I then caught strep throat, and got it bad, up into my ear as well. Upon doing research I learned that 15% of kids are "asymptomatic carriers" of strep even after antibiotic treatment. I was very sick for a few more weeks. I was forced to realize that my CFIDS was not, in fact, "cured" and that my employment options are limited.
Since then I have gradually been recovering my strength, but have had to take on more hours at work in a seemingly futile attempt to pay the bills. I now have 3 at-home jobs, none of which pays enough to be full-time so I have to juggle them. The medical transcription only pays around minimum wage now and I can only type for about 7 or maybe 8 hours before my fingers stop working, so in addition I read tarot cards on psychic lines and provide counseling on the internet. Occasionally I also do housecleaning or painting jobs. I'm not currently teaching yoga, only because I don't have any students, although with my 3 other jobs I'm not sure it would be possible. I feel extremely overwhelmed and exhausted. The typing intensifies the pain in my neck, shoulders and arms. My waterbed is a necessity, not a luxury. I sleep 10 hours (the minimum recommended), and wake up still feeling tired, and panicking at the prospect of the day's work ahead of me, and wondering how much longer can I survive like this. I am sure I could get well again if only I could rest, but it's not an option here in Florida unless I want to become homeless. Sometimes I just break down and cry. I think my accomplishments are pretty damn impressive, though, for somebody who the doctors said would "never work again."