Transverse Myelitis Association
Volume 5 Issue 1
December 2002
Page 41
Volume 5 Issue 1
December 2002
Page 41
| My Story and
Announcing a TM Support Group in Puerto Rico Yvonne Lugo “Trapped in a sleeping body” was going to be the name for the memoirs I started writing ten years ago when I got TM. At that time, 1992, I had just turned twenty years old, was in my fourth year in college and had two part-time jobs. I had everything going for me. One day I got the chicken pox, the kind you can hardly notice, because there were just a few marks, which, at first, I thought was acne. A few days later I had the strongest headache ever. I could barely open my eyes. Three days after dealing with the chicken pox symptoms, I stopped urinating and was walking really slowly and with back pain. That night, which marked the beginning of a whole new meaning of life for me, I had the worst pain ever in my lower back. My parents suggested to me that I sleep on the floor to ease the backache. The next morning I couldn’t get up on my own. My legs were weak and I still couldn’t urinate. I was rushed to the hospital and in the emergency room I was diagnosed with Guillian-Barre. They then transferred me to another hospital where they said that they had the proper equipment for me. On our way to the hospital, the ambulance had mechanical problems and a second ambulance was called. The paramedic of the first ambulance quickly began to work on it, and by the time I was almost in the second ambulance, he had fixed it and insisted on taking me. He was so determined that he drove me to the hospital. Once we got there, I needed to be catheterized urgently, because my bladder was full. But he requested a time alone with me to pray. I am Catholic, but it was the first time I had heard the phrase, “faith moves mountains.” I have never seen the paramedic again, but his determination and words have been with me always. After several examinations, the neurologist diagnosed TM while everyone else insisted that I had Guillian-Barre. Immediately, they administered intravenous high dosages of cortisone. By the way, dealing with that moon face was not easy. Shortly thereafter I began physical therapy. I remember the day I took my first steps. I was in the rehabilitation area and was the youngest one there. I was placed in between the bars. I moved my leg forward and took that step and did the same with the other leg. Everyone in the room applauded me. It was the greatest feeling. I was doing pretty well with my legs, but two weeks after being hospitalized they lowered the cortisone dosage too much and I suffered a relapse. It was literally beginning from scratch, being bathed in the bed, unable to move my legs; it was devastating for me, as well as for my family. That day after the relapse, when I got to PT, my legs wouldn’t respond. Next to my mother, who was always with me, sat a lady that took a little plastic saint from her purse. After watching me struggle to get my legs moving with no results and my eyes full of tears, she told me that once she had been very sick and someone else, already cured, gave it to her with the condition that when she got well, she had to pass it on. So my crying mother came to me and handed me the little saint. I thought maybe it was worth trying, so I took it in my hands and started praying from the bottom of my heart. Immediately, my legs started moving and I was even able to take my usual steps standing in between the bars. Who would know; faith does move mountains. After thirty-two days in the hospital, I finally went back home. I would wake up in the mornings and listen to a song by Michael Bolton, “When I’m back on my feet again.” I would go for physical therapy three times a week and the other two days my brother and boyfriend (who is now my husband and has been an angel sent from G-d) would take me to the pool for more therapy. My legs started getting stronger, although my bladder and intestines were not functioning normally. I was able to finish school the next semester and got a bachelor’s degree in journalism and went back to work. In 1994 I was diagnosed with avascular necrosis in my left hip as a secondary effect of the high dosages of cortisone. It was very hard for my loved ones and for me to deal again with the struggles of walking, only this time with pain. A so-called doctor did a drainage in my hip and when I walked again after four weeks on crutches, the pain was still there. He told me to go to my neurologist, because he didn’t know what was wrong. For two years I walked with a limp, because of the unbearable pain. I had several doctors tell me that I would never be pain free and that I had to learn to live with it. I used a cane for five months. I finally found a wonderful doctor that was concerned enough for my quality of life. By this time, I was twenty-five and both hips were bridled, because of the condition. I ended up with two total hip replacements. I walk now pain free and even cross my legs better than before. By the way, the first surgery I had with the so-called doctor was unnecessary, because this procedure is obsolete for this condition. A few months later I was diagnosed with epilepsy. I was on several medications for some time, but currently I am seizure and drug free for two years now. For a long time I lived feeling like I was a victim and that people had to feel sorry for me. And since that was what I projected, that is how people treated me. Also, a big issue that I needed to deal with was the fact that the people that once were my friends never visited nor called when I was sick. Some even stopped talking to me. They made me feel as if I did something wrong. The only support I had was from my family and relatives. But deep inside I did not like feeling victimized. I was a fighter. So, I decided I needed to change. I started reading motivational books which helped me regain my self esteem and confidence. I began doing exercises and weights and I learned to extract from the not-so-good experiences the positive side of them. Someone once told me that all experiences are blessings. The not-so-good ones are part of our development and formation and the good ones are happy moments, but both are necessary for us to be who we are. Incredibly, my body as well as my mind responded. Since my muscles are much stronger, I can walk at a faster pace, my bladder has improved, and I feel more in control of myself and independent. Today, I have a full and normal life. I work, travel and do things I once thought I would never do again. I still have my neurogenic bladder. I have rare involuntary movements and sensorial patches in my legs and I have severe constipation due to spasticity in the puborectalis muscle. While I was searching for information on my symptoms, I came across the TMA. I was thrilled to read about it and to discover that there were others like me. Today, I am very happy to announce that Puerto Rico will have a support group. I have started, with the guidance of Sandy, searching for TM patients and distributing informational brochures to medical offices, PT centers and everywhere I can imagine. My father has a printing shop and he was kind enough to let us print the TMA brochures in both English and Spanish free of charge. My brother did a great job making this happen. Jim has posted the TMA brochure we produced in Spanish on the website. I really hope that we can make a difference in the lives of those patients affected with TM. I encourage all those Puerto Ricans to reach out and contact me. We can all learn from each other. God bless you all, Yvonne Lugo (787)312-9711 myelitispr_yvonne[AT SIGN]hotmail.com |
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