I wrote the following essay during the fall of 1991 in my freshman English class at the University of Oklahoma. The assigned topic was "being different isn't always better". My professor submitted my essay to the local college paper for publishing, and it was picked up by the local AP wire as well. I'm not sure who all picked it up, but I know it was published in 10/91 by: The Ponca City News , The Tulsa World , The Daily Oklahoman, and The Oklahoma Daily.
Robyn O'Rourke [now Pollman] of Ponca City, OK, [now St. Petersburg, FL] who became ill in her sophomore year of high school and was eventually diagnosed with Chronic Fatigue Syndrome and Fibromyalgia Syndrome in her junior year of high school, recently described her long ordeal with the disease and said "Being different isn't always better."
Now a freshman at the University of Oklahoma, she has learned to live with the chronic illness and recalls the traumatic events leading to the ultimate diagnosis of her disease.
"I came down with mono shortly before Christmas of my sophomore year. I was extremely weak and was always taking naps. Honestly, I tried to slow down and take it easy, but there was so much going on in my life that it became extremely difficult to do so. I pushed myself over the limit on several occasions in order to participate in school and social activities, and did not properly take care of my body. By the second nine weeks of my junior year, it was becoming apparent that something was seriously wrong. I still tested positive for mono. There was no sign of my getting better, only worse.
I ended up totally bedfast for six months. The long, and sometimes painful, ordeal was underway. Unable to eat due to severe stomach and intestinal problems, I lost over twenty-eight pounds. I only had the strength to sit up in bed, and that took a lot of effort. I even required help to go to the bathroom and back. The energy it drained from me demanded hours of sleep afterwards. I was forced to dwell in unending darkness because the slightest hint of light made my head throb in anguish. My mother purchased blackout shades for the windows. My muscles, joints, and bones ached in deep indescribable pain. My lymph nodes were swollen and tender, and bed sores were developing on my back, arms, and legs. My hands and feet had a strange tingling sensation, and at times they felt on fire -- almost as if poison was flowing through my veins. My doctor finally suggested that my family invest in a waterbed for me. It eliminated the bed sore problem, and the heated water and motion helped my muscles to feel better and helped to reduce the "tingling".
The doctors office became my second home. We saw an endless string of them, each with a different opinion. One said I had Lyme Disease, another a cyst on my ovary, yet another Rocky Mountain Spotted Fever. Tests were run for leukemia, cancer, and MS. Some doctors hinted at AIDS, although that would have been virtually impossible. I was sent to a psychiatrist by a certain 'doctor' who thought I was a hypochondriac. The psychiatrist told that 'doctor', "This girl is sick, and it's nothing therapy could cure -- now find the cause of her illness." After seeing seven doctors, my family physician decided that I must have Chronic Mono, a.k.a. Chronic Epstein Barr Virus (EBV). He told me that I would never get better and suggested I learn to live with it. My mother refused to accept this diagnosis, and demanded he send me to an infectious disease specialist in Tulsa, OK. That's what he did.
It was time to go back in and out of hospitals. I endured endless and sometimes painful tests. So many blood tests were ran, at times I wondered if I would have any left when they were though. X-rays were taken of my chest, my upper intestinal system, and my lower intestinal system. I also had a camera scope inserted into my rectum. These x-rays were uncomfortable, and very embarrassing, especially to a teenage girl. Anyone who has had barium by mouth or by enema (a.k.a. liquid chalk), can attest to the torture of which I speak. A cat scan and MRI were taken of my brain to search for abnormalities. Basically, this involves having the body strapped to a padded board, so that no movement can be achieved, and then being slid inside a machine for over thirty minutes. I am claustrophobic, so those two tests were no picnic. I was poked, prodded, and examined from head to toe, inside and out. There was no modesty to be had. At times I felt like no more than a guinea pig in a mad scientist's lab.
Four different doctors at the clinic conferred on my case. Two weeks later the specialist I was seeing asked my mother and me to meet with him. He entered the room and announced, "Please sit down, we need to talk." The tension my mother and I felt was unnerving. He announced, "Our tests show that you have Chronic Fatigue Syndrome and Fibromyalgia Syndrome, more commonly known as CFS and FMS. CFS is a disorder that suppresses the immune system, but from what we can tell, is not contagious. Their is no definitive test for CFS or FMS, but with all of the testing we've done we have determined that you meet every one of the major and minor criteria. The FMS helps to explain your muscle, joint, and bone pain, as well as the tingling sensation you have. You should not get worse, and might eventually go into remission. Then your lifestyle will return to close to normal. But, your progress will not be judged by days and weeks, but rather weeks and years. And there is always the chance for a relapse if you overdo it or push too hard, or your stress levels increase." My mother looked at him in astonishment and announced, "Is that all!" It may seem like a strange reaction to some, but you have to consider that I was also being tested for cancer and leukemia. Part of the nightmare was over in my mind too, although some would look at it as only the beginning. And in a way that is just what it was – the beginning of a different kind of nightmare.
I was taken out of school and placed on homebound instruction for the remainder of my junior and senior years. I missed out on the "normal" high school experience. No longer would I attend another student council meeting, or cheerlead at another basketball game. I had to resign as class president. Lunchtime was not spent with friends, but rather alone with a soap opera or the Gulf War coverage. Dating became a thing of the past, and I was physically able to spend only fifteen minutes at my prom. Thankfully, my prom date was a close friend, and more than understood. I would never have another summer tan, due to my new medications and having to give up all outdoor activities. Anything that required the slightest physical exertion was no longer an option, or on a "good" day, at least became a spectator sport for me. Friends visited faithfully in the beginning, but eventually moved on with their lives. I had to learn how to function in a totally new, and sometimes very lonely and isolated, world. I came to rely on God much more than I ever had before, and my mother became one of my only friends.
Some people would be very bitter about being robbed of their high school days. But the way I see it, when you're faced with the very real possibility of cancer or leukemia at sixteen, being diagnosed with CFS almost felt like a blessing. But, it was a blessing wrapped in a curse -- a curse of isolation. I can't count the number of nights I cried myself to sleep wondering what was wrong with me. Now at least I know, and can move on -- improving and working with what I have left. CFS has matured me and made me stronger. More importantly, it gave me a new perspective on life and how truly precious it is. I feel as if I’ve almost aged beyond my years."
Miss O'Rourke [now Mrs. Pollman] said, "In high school, being different from everyone else is tough. Finding out that you have a chronic illness is even tougher. People's opinions of you can change overnight, and it's hard not to lose your true identity. The diagnosis can make you bitter, or make you stronger. I chose to try and strive for the latter and educate a few people along the way."
Since Robyn's ordeal with CFS, a support group has been organized in her hometown of Ponca City and meets at 7:30 p.m. the first Monday night of each month at the Ponca City Library, Ponca City, OK. A hanging file with information about CFS, FMS, and their symptoms and treatment has been placed at the Ponca City Library as well, or interested persons can call 1-800-442-3437 for more information on CFS. The local group is listed with the CFIDS Association of America, Inc., at Charlotte, N.C.
UPDATE to the above (not yet published):
Right about the time that I was due to start college at the University of Oklahoma in '91 on academic scholarship, I went into remission from CFIDS and FMS. I experienced four very "normal" college years. My social life was full and busy, and my days of sickness seemed so far away and long ago.
After I finished at OU, I moved away from Oklahoma for the first time in my life. I wanted to try my wings and see the country. I landed my dream-job in Philadelphia as a recreational therapist in a day treatment program for emotionally disabled adults. I had my own office with a window, secretary, the works... I had finally entered the corporate world!! Shortly after I moved to Philadelphia, my former college sweetheart and now-husband decided that he "couldn't live without me" and flew out from Oklahoma to propose. Obviously, I said, "YES!!"
In March of 1996, I left Philadelphia to return to Oklahoma and be near my then-fiancé. Todd was in graduate school at the University of Oklahoma (where we met), so it was easier for me to move than for him. When I returned to Oklahoma I found another job working with handicapped youth. It wasn't quite the same as in Philadelphia, but it paid the bills. I spent the majority of my time working and planning our June 1, 1996, wedding. Two weeks after the wedding, I got what seemed like a flu bug. It just never went away, and a few days later resulted in an emergency room visit. I never recovered from that. I kept getting worse and worse, to the point I had to quit my job. I ended up almost, if not as sick as back in high school. I became bedfast close to eighty-percent of the time.
I got in to see the specialist that originally diagnosed me with CFIDS/FMS in early August of 1996. After a few tests, he determined that I was in a full-blown relapse of the two, and could not tell when/if this would pass. Because I had recently started having fainting spells as well, he also ordered what they call a Tilt Table Test. This test determines whether the patient has a blood pressure disorder called Neurally Mediated Hypotension (NMH). I tested positive for NMH on August 16, 1996, and was placed on a new medication called Florinef in hopes of treating my NMH. Unfortunately, that new medication put me in the hospital for almost a week...so it was back to the drawing board again...
We moved to Florida from Oklahoma in January of 1997, on the recommendation of my primary care physician. It took every bit of the little amount of "savings" my new husband and I had. While the move was not intended to be a "cure", it was in hopes of providing some pain relief for my Fibromyalgia. My family has helped us financially so that I could start seeing a CFIDS specialist here in the Tampa Bay area. I had my first appointment with him at the beginning of September 1997. I have shown some improvement, I'm happy to report. In January 1998 I started taking Pro-Amatine (Midodrine HCl) for NMH -- and (knock on wood!) I have not reacted adversely to it. I'm still bedfast over 50% of the time, but I'm not complaining. Improvement, whether slow or gradual, is still improvement...
I was also recently awarded Social Security Disability (after my second denial) on June 26, 1998. I originally applied for Disability at the beginning of April '97, and was awaiting a hearing with an Administrative Law Judge (ALJ) when the surprise decision was handed down early by a Social Security Attorney Advisor. (I received my first denial at the beginning of September '97, and my second denial at the beginning of January '98.) My award letter read, "...It is the decision of the Attorney Advisor that, based on the application filed on April 10, 1997, the claimant is entitled to a Period of Disability commencing June 15, 1996 and to Disability Insurance Benefits under Sections 216(i) and 223, respectively, of the Social Security Act..." My SSDI award was based on "chronic fatigue syndrome, fibromyalgia, hypotension, migraine headaches, irritable bowel syndrome, generalized muscular weakness, and pernicious anemia". I personally fought the depression label from day one (much to the chagrin of my attorney) because I do not suffer from it, had never been diagnosed with it, and I did not want benefits based falsely on depression just because it was the 'easy' thing to do (i.e. to get the money more quickly with less of a fight). And now that I've been awarded my benefits without having to go that route, I'm glad that I stuck to what I believed. I'm extremely pleased with my decision, not only for my sake, but for the pure and simple reason that it proves Social Security Disability CAN be awarded based solely on CFS, FMS, and NMH -- and that one doesn't necessarily have to go before an ALJ before the benefits are justly awarded. (Please click here for more information...)
No -- Todd and I are not the normal newlywed couple. In fact, we're far from it. My husband had to quit graduate school, in order to work full-time and become a full-time caregiver to me. Hearing this could happen, and *watching* it actually happen have been very hard on him. And, I'm faced with the difficulty of educating yet another family on just what CFIDS, FMS, and NMH are...and why it's not just as simple as "eating a few pickles", "popping a few vitamins", or "taking a long nap". If only it were that simple!! Then, there would not be thousands -- if not millions -- of people out there just like me, or worse.
It is now my goal, as well as that of my husband, to learn about these diseases -- and educate about them as well. We have devoted individual web sites to them, and we hope that people will take the time to stop by. My CFIDS/CFS/ME web site is located at http://listen.to/CFS_FMS_NMH, and my NMH web site is located at http://members.wbs.net/homepages/c/f/i/cfids/NMH.html.
I have also started an Internet mailing list for CFIDS patients in their twenties, along with two other friends. Twenty-somethings encounter a very unique set of CFIDS-related problems. Many of us became sick as a young child or early teen, and we are left figuring out how to become an adult without much of the social training and interaction that others our age receive. Information about this 20s mailing list can be found at http://members.wbs.net/homepages/c/f/i/cfids/cfs20s.html, or by e-mailing me at email@example.com.
© 1996, 1997, 1998, Robyn Pollman, All rights reserved.
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