(Editor’s note: Karen DeLuca Katchmeric lives in Annandale, Virginia. Before she became ill with Chronic Fatigue Syndrome and fibromyalgia, she was a lawyer. This is her story.)
I used to work seven days a week, at least eight hours a day–outside the home–and still had time to get everything done around the house. And then I got sick, actually by trying to get well.
It started when I took a physician prescribed six month course of Synarel for my recurrent endometriosis. My life was changed forever. What followed were three long, frustrating years, with a plethora of weird, seemingly unrelated symptoms–severe allergies where before there were none, a thyroid that just died, biannual changes in my menstrual periods, which preceded the onset of two cycle long migraines in the Spring and deep throat spasms in the fall. Add to that full-feeling ears that rang, a dry mouth with salty tasting saliva…the list could go on and on.
After much testing and many doctors–neurologists, allergists, rheumatologists, endocrinologists, gynecologists, otolaryngologists, physiatrists, gastroenterologists, orthopedists–I’ve been poked and prodded by them all, I was ultimately diagnosed with CFIDS and severe fibromyalgia- by an infectious disease physician.
Needless to say, during the course of the three years prior to my diagnosis, I had plenty of time to contemplate. My brain, after all, was not dead. After the anger over the loss of my former self subsided, I began to ponder the meaning of life, mine in particular, and what was and was not of importance. As I examined, I jettisoned the value systems and trappings that no longer served me. I cleaned house, both literally and figuratively. I discovered that my worth as a person was much more than just as a stream of income and not defined by the job status that I held.
I approached my search for a diagnosis with the same organizational skills that allowed me to get so much accomplished when I was healthy. I went from doctor to doctor until I got a diagnosis that was not dismissive and that made sense to me in light of my knowledge and symptoms.
My search for a diagnosis taught me the less-than-omnipotent nature of physicians and the power of being a well- informed, proactive patient. I vowed never again to see doctors as Godlike, but rather as my partners in health care who just happened to go to medical school.
Similarly, I approach my recovery with the same anal retentiveness that has stood me in good stead for over forty years. First, I set a stretching schedule (every two to three hours) and plan my activities around it. This is limiting to a degree, but it ensures that I never overdo and minimizes the relapses.
I take the some vitamins, herbs and supplements (no prescription meds, thank you, it was, after all, a drug that got me into this mess!!!) at approximately the same times each day. I get up early and go to bed early and take a warm, soaking bath each night. I wrap my neck in moist heat for twenty minutes three times a day, particularly important and helpful in the morning. I eat my meals at approximately the same times each day. I have learned to like fruits, vegetables and yogurt and avoid dairy and yeast.
As for my “health regimen,” it’s every other Monday for gamma globulin and allergy shots (and a B-12 shot once a month), one Tuesday a month for acupuncture and every Wednesday for physical therapy and a massage. This leaves me ample time for my own personal activities on my “days off” and in between stretching periods. I try to do the most physically demanding activities mid day when I am the least stiff. It’s so automatic I do not have to think about it and it gives me some control over the illness.
Sameness is good. By doing this, I feel I have a “life.” True, it is not the “Energizer Bunny” existence that I used to have, but it is far from the worst it was or could have been. I get up every morning and roll right out of bed. Sometimes I even beat the alarm clock. I do low impact aerobics for half an hour daily. I go grocery shopping. I cook. I do laundry. I dust. I leave the vacuuming to my husband, although I can do it when pressed. I load and empty the dishwasher. And lest you think that every day is the same, let me assure you that my regimen does not preclude doing “fun” things like going to a mall or a museum.
As my condition improved, I began to write to satisfy my professional urges, admittedly, but also to express and communicate the personal growth I had achieved as a result of my ordeal. It was something that I had wanted to do since my freshman year in high school and had been discouraged along the way. And now, ironically through illness, I had been given a second chance.
Illness a Gift?
So, at age forty-two, I summoned my inner and physical strength and found the courage to effectively start over. I work at the computer, where I am right now composing this article, but for no more than an hour at a time, or until my neck and shoulders start talking to me!
I am trying to turn my lawyer’s skill with words into a home-based writing career that will accommodate my illness, turning a negative into a positive so being sick won’t be a loss but a change. I focus on what I CAN do and continually try to expand it. I have decided to make lemons out of lemonade. I would like to contribute to, rather than drain, my family’s financial resources.
I also feel that I can contribute on a broader scale in that I have a story to tell that at least one other person can learn from. My ultimate goal is to publish a snapshot of my life through a compilation of poems, very short stories and essays tied together with personal narrative.
I have found it is demoralizing to lay in bed all day. It fosters “woe is me”ism and inaction with respect to the illness. I write this to inspire others and to let them know that no situation is hopeless and that every challenge is there to be learned from. All things happen for a reason. In my particular case, I was headed in the wrong direction for me. I now believe that I am back on track.