At age 26 my body turned on me and my life can never be the same again. I was always an aggressive and athletic person. I had trained as a long-distance runner since high school and participated in marathons nearly every winter growing up at the coastal sunshine city. I always thrived on the challenge of pushing my body to its physical limit. From marathons to triathlons, from biking to cross-country races, from scuba diving to windsurfing.
But it all changed. It started just after I had completed the last Singapore International Marathon and an Ironman Triathlon in winter of 1993. After a diving trip in the Indonesian waters to recover from the race, I felt tired and somewhat stiff from the physical exertion of the races - or so I thought. Back to Singapore, reckoned that I was being stung by mosquitoes, I fell ill and was diagnosed with a possible dengue fever by the local doctors. It left me sick for weeks with soaring fever of over 40 degrees Celsius. No medication and treatment of any kind was able to nurse me back to health. From Taoist prayer water, to witchcraft doctors that my parents had engaged then, from plasma intravenous drips to blood test at the hospital, nothing worked. Just as I was almost giving up, waiting to be admitted to the hospital for observation one fine day, my body decided to recover by itself, slowly but surely. That was one unexplainable episode of my life.
I crawled back to training again after six weeks, cross-training biking, running and swimming with aerobics and weight training like a sedentary. Somehow during that lunar New Year spring celebration, my left shoulder became extremely painful and swollen. The pain was so bad that I needed my mother's help to get dressed the next morning. But three days later, the pain was gone, as if it had never existed. I began experiencing intermittent problems with my joints. Next it was my right ankle, then my right shoulders, and so on, throughout all of the major joints in my body, until finally they all hurt at once. Some doctors said it was shin-splint stress fracture, others diagnosed that it was just inflammation.
As I relocate to Shanghai in summer of 1995, things didn't change much. Following a very rigid schedule at work, I have to discipline myself to a very regimental workout to alleviate my stress at a precise hour every day without any exception. I crashed at work and that alerted me to consult an expatriate clinic in Shanghai. All I know was I had a growth and I broke down desperately.
Late spring of 1997, another relocation to Hong Kong. I had the same less strenuous exercise regime, but cut back on all competitions and races, in fact only once throughout my stay and another race that I didn't show up. Then a health check prompted that I needed to have the operation and was diagnosed with a decaying fibroid, and needed a blood transfusion as well with my anemic condition. Shortly after the operation, I had following rounds of tests over a period of ten months, checking for everything from Lyme disease to bone cancer. I was diagnosed with rheumatoid arthritis. I, who once jogged seven miles a day, now needed help just getting to the bathroom. I had to be assisted to take a shower, and couldn't even use my hands and fingers to turn a doorknob. I lived with this incredible joint pain for about a year and I couldn't do anything. For any reason that I could run, was because I was so headstrong, swallowing the pain as I do my jogging daily.
During that grueling year, my rheumatologist tried every possible pharmaceutical combination to help me feel better. I was taking the non-steroid anti-inflammatory drugs three times a day. Then tragedy strikes again, on and off I have lesions and ulcer growth orally and in my genital areas. On one occasion, it was so bad that I had to consult a gynecologist who immediately requested that I have yet another operation. In between those two years in Hong Kong, I was alternating these two specialists and had three operations. Feeling helpless, the rheumatologist prescribed steroid drugs, which caused my body and face to swell. As soon as another new drug was in the market, I was immediately put to test like a guinea pig. Each new medication I tried presents some form of side effects that other patients do not encounter. For the better or for the worst, it got to a point that I have to take some other drug to counter-treat the side effects. I finally decided to seek assistance from the US medical center and piece the puzzle together myself with various medical, diet, exercise logs that I kept intentionally for my reference.
I came to realize that each anti-inflammatory drug and steroid (oral and injections) I take, has a potent immunosuppressive medication factor which are used to fight cancer in some chemotherapy regimens - were used on me to treat arthritis. I had to take other drugs to protect my stomach from the strong arthritis medications. I finally succumb to the belief of trying alternatives from eight months of acupuncture to healing massages, from Chinese herbal medicine to homeotherapy. Nothing worked well for more than two months; I didn't get any better. In fact, my x-rays every quarterly and blood test every bimonthly just go on to show that the disease was getting worse and quickly. My toes and fingers were starting to show signs of deformation as a result of RA. I had begun to develop nodules, subcutaneous lumps of tissue, on my wrists and elbows. The rheumatologist could only offer to continue trying different combinations of drugs until they found something that worked.
I had reached my lowest point and believe me, a woman like me, who has the highest threshold of pain were just push to the limit. Each attack I experience, it just deepens my threshold. How will I be able to describe "pain" in the scale of one to ten when I have to express myself to my dear ones? I began crying right in there in the doctor's office. To a point that I even consider seeing a therapist to help me deal with the emotional aspects of my illness. The specialist prescribed yet another medication - for my depression. I continued for six months and decided to drop all treatment and medication totally, biding my rheumatologist with my last insensitive remark..."so, what good are you to me? Since I am not a RA patient, but Behcet".
Throughout that time, I continued my research and seek help from the US, only to realize that I was being rejected treatment for reasons being that I was not in the US and they are reluctant to take in another new patient. The only one fruitful information was the logs and drugs diagnosis I had kept, suggested that it was not Rheumatoid Arthritis, but Behcet's Disease, which the two specialists finally deduced that it has to be it. Yet no clinical tests can be performed to confirm that I am being treated for Behcet's Disease or Syndrome as the medical specialists so called it.
I reorganized my life, re-log those charts of medication I take, the dosage and tests that I have to take once again, by trial and error. These are but log that I reference to mainly to help myself cope with my non-fatal yet chronic disease. Most times I wanted to be able to confide and to share the pain, but how do I do that? No amount of words or expression, not even "bad mood" will help alleviate the degree of pain intensity. Other times, I just learn to cut my emotions off from within. That makes me feel better, at least I don't break down mentally. All that is left of me is for me to keep my guard up and go through life's motions. Most days I wish someone can understand, I tried but it doesn't help. It just worsens a relationship and immobilized a free spirit.
I wish I could do something useful to help others with this disease. Yet I realize that all research needs funding, and all funding derives from the question of demand, as well as the pharmaceutical companies' priority list for other death-defying threads.
Dear God, all I pray each morning is that I am able to perform the basic bodily function and not worry about if I will vomit after the medication. If that my veins are still taut and swollen from the steroids or that my metacarpal ligaments are protruding so badly that I need my running shoes instead of my dress shoes. If You hear me, answer my questions. Times when I am away alone and traveling to the extreme corners of the earth, I am all well miraculously. Yet each step that I take within the city block, everything seems to go wrong. Are You telling me that I will lead a lonesome life, a sailboat that will never anchor? Are You answering me in a way that I have to figure it all out myself? I'm puzzled.
Forgive me God that I don't respond to wonderful friends who care so much about me. That I back off from their kindness, because I have rashes one day and swollen nodes on another day, and all I choose is to become a hermit crab, facing my monitor and buried myself with words of frustration, anger and tears onto another page of nonsensical writing. If only words do justice precisely.
If You hear me, answer my questions. At thirty-three, Jesus Christ's year.... yet no suffering is greater than His. I'm sailing again for a longer than usual period. You will be watching over my shoulders, will You?