Transverse Myelitis Association
Volume 4 Issue 1
March 2001

Page 8
In Their Own Words

 

In each issue of the newsletter, we will bring you a column that presents the experiences of our members. Their stories are presented In Their Own Words by way of letters they have sent us. We are most appreciative of their willingness to share their very personal stories. It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves. It is our hope that the stories will help us all realize that we are not alone. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.

Violet (Joyce) Chandler
Woodville Alabama

 

In October 1993 I was living and working in Southern California (Huntington Beach). My boss encouraged all of his employees to take the flu shots that were offered by the company, because we were working on a critical government program. Many of us would be working lots of overtime hours and he didn't want anyone to get sick. So I got in line and took the flu shot. Later during the Christmas holiday, I had several family members staying at my home who were sick with the flu.

On January 1, 1994, I awoke with a swollen and very tender stomach. Throughout the day, my discomfort grew worse. I suspected I might have a bladder infection. The next day I called my doctor and he was able to see me right away. His diagnosis was possible appendicitis, but he wanted to watch me over a few days to see what would happen. He placed me on a liquid only diet regimen and I went to his office every day for about a week. After a week I seemed to be getting better so he allowed me to return to work but wanted me to call if I had any sign of further pain. Throughout the month of January, I didn't quite feel right. I normally walked two miles each day, but found that I would become weak after just a short walk.

On February 1st of 1994 I was at work and during my lunch hour I went for a long walk. I didn't get far when I felt a strong weakness around my mid-section (I cannot describe it), I just felt very weak. I went back to my office and rested through the duration of my lunch break. A couple of hours later, I had to go downstairs to the first floor of my building and on the way back upstairs, my legs went weak on me and I almost fell on the stairs. When I got to the top of the stairs, a numbing sensation started at my toes and quickly climbed up my legs to my waist. I limped back to my desk and sat there for a while trying to figure out why the lower part of my body had gone to sleep. I got up and tried to walk it off, but my lower back started hurting. I decided I'd better go see a doctor so I left work and walked to my car. My home was just two miles away and I drove straight home to get my husband. Just a few minutes after arriving home, I felt extreme pressure to urinate and have a BM and went into the bathroom. I was able to get everything started, but it stopped in midstream. I wasn't able to complete the elimination. I immediately started to feel the most intense pain in my back and yelled for my husband to help me finish dressing. I told my husband I needed to go to the doctor immediately and explained the numbness and pain.

My husband rushed me to our doctor's office. Our GP ran me through a battery of tests. He asked me to close my eyes and stand on one leg. I couldn't balance myself on either leg. He asked me to stand on my tiptoes; I couldn't do that either. He asked me if it was OK for him to call a neurologist to discuss my symptoms. I said yes, of course. He called a neurologist and after explaining my situation told me to go immediately to the emergency room and the neurologist would meet me there after he finished with his office patients.

Arriving at the hospital, I had to lean on my husband in order to walk from the parking lot to the ER. Once inside, I was basically ignored by the ER staff and I waited for the neurologist to arrive. By the time the neurologist arrived, approximately two hours later, I was very weak in the lower part of my body and had difficulty and pain when I walked.

I was placed on a hospital bed and almost immediately paralysis was evident. I could feel my internal (female) organs going numb also. I was paralyzed from the waist down and was very weak. I was admitted into the hospital and was told that I would need a series of medical tests and x-rays. I was confused and worried.

I found that I could not lift my legs at all, I could not use the bathroom, I had no appetite, I was disoriented, I had terrible headaches, nausea, and I was in a state of total confusion. This was the sickest I had ever been in my life.

I remember telling the nurse that I had to urinate and she told me to get up and go to the bathroom and then left the room. I couldn't get up and told her when she returned later. She then brought a bedside potty-chair and left my room again. I dragged myself out of the bed and hoisted myself up on the potty-chair but couldn't go. I then had to manipulate my body back into the bed. All through the night I told the nurse I had a full bladder and I was in a lot of pain. She called the doctor and then gave me a pain shot. But not until she scolded me for bothering her and she said to me, "are you sure you're in pain, or are you just scared?" I assured her I was in pain. The next day, I was taken across the hospital parking lot to an MRI facility where I was given the MRI. It lasted at least two hours. I was also given a multitude of tests to check for any viruses (Lupus, HIV, TB, spinal tap, x-rays, and others that I cannot remember) plus a brain scan and kidney scan. I was given my diagnosis shortly after the MRI scan. It was Transverse Myelitis, which I had never heard of and I didn't know what to expect.

I guess the doctor discovered through the MRI scan that my bladder was full and ordered a catheter. This was about 24 hours after my initial onset. Once the bladder was drained, a lot of my pain was alleviated. The nursing staff at this hospital virtually ignored me for the full week I was there. I wet the bed several times before given a catheter and they were not real happy with me. I also continued to suffer from blinding headaches, nausea and dehydration.

Seven days later I was transferred via ambulance to a rehab hospital. I was assigned new doctors because my original neurologist did not practice at this new hospital. I was very sick for the first few days and I had lost 16 pounds in just eight days. I was heavily medicated, but cannot recall at this time what medications I was given. I know I was given prednisone in heavy doses and an antidepressant. I hallucinated from the prednisone and later learned that the nursing staff, having forgotten to give me the medication on time, had "doubled up" on the medication, on several occasions, which caused me to have increased heart rate and hallucinations. I was dizzy when sitting up and felt faint. I had no appetite and refused to eat. I was getting weaker instead of stronger. I also noticed that I had blurred vision and a ringing in my left ear. These symptoms disappeared after a couple of weeks.

After I complained to the medical staff about the medication blunders, the nurses were more careful not to over medicate me and I started to get over the dizziness. After a week in the rehab hospital, I was able to begin physical therapy.

My physical therapy consisted of learning to transfer from wheelchair to car, shower bench, therapy mat and bed. I was taught how to force my bowels to move using suppositories and to self-cath, to dress myself lying down, and to make a bed from a wheelchair. Once a week I was taken to a local gym so that I could use their equipment for exercises. Later, I was able to take a few steps using the upright parallel bars. After getting a little stronger, I was using various exercise equipment to help strengthen my arm and leg muscles. A pair of leg braces were made for me to help me to walk. After about four weeks, I was able to walk with the use of a walker. My balance was very poor and my legs were weak but I eventually gained more strength as time went by. I started noticing that feeling was starting to return a little bit at a time to portions of my legs.

On March 15th I was released to go home, but I had to return three days per week for three months to continue my physical therapy. I fell at home several times due to the walker getting stuck in the carpeting. I worked hard at my home exercises. My ability was very limited. I could not get up from the sofa without help. I had muscle spasms in my legs that kept me from sleeping at night. I had many mishaps with bowel and bladder incontinence. But I was determined to recover as much function as I could. I started walking around the house by using the walls and furniture to keep me upright. I graduated from the walker to a crutch. Eventually, I was able to take a few steps by myself, but I always made sure I was near something that I could crab onto for support. My balance was very bad, but I kept practicing to stand alone. Eventually, I could walk around the house with confidence without having to hug the walls or furniture.

I returned to work, against my neurologist's advice in July of 1994. This was a big mistake, but I was determined to give it my best. I soon found out that my incontinence problems caused me to constantly worry that I would make a mistake and be embarrassed. Well, I did make mistakes, lots of them. I somehow hid most of my incontinence errors, but I'm sure others noticed on occasion. I had other problems too. I realized that my toes on both feet were starting to turn under (hammer toes). They eventually were so badly deformed that I could not wear certain shoes because of the pressure and pain to the toes. I had a bladder and uterus prolapse due to paralysis and it became obvious that I would require surgery for these problems.

In November 1994, 1 had the left foot surgery to correct the hammer toes. I had the right foot surgery done in February of 1995. In November of 1995, I had to undergo a total hysterectomy and have the bladder lifted. Unfortunately, the bladder fell again and in June of 1997, I had to have a complete cervical reconstruction surgery. This time the bladder had to be sewn to my backbone in order to help prevent another prolapse. Following this last surgery, my doctor strongly recommended that I not return to work and that I should file for total disability. Which I did.

In March of 1998, I was diagnosed with Graves' Disease. Another auto-immune disorder. I was told that it could have a relationship to TM since both were considered to be auto-immune illnesses.

Today, I am living in Alabama still dealing daily with TM and Graves' and just trying to make the best of it. I have not worked since April of 1997. I am walking a little bit better, but still use a cane when away from home. I often lose sleep due to muscle spasms and a burning sensation in my left leg. I have recovered some feeling to my legs, more so in my right leg than the left. I still tire easily and have serious balance problems. Incontinence is something I live with and try to control through self-cathing several times a day and watching what I eat so that my bowels function property. I don't go out much, don't attend too many social events, don't travel much. I'm able to do household chores, but have to rest often. It has now been six years since my diagnosis of TM and I don't expect much further improvement. I take each day at a time and don't have time to feel sorry for myself. My best wishes go out to other TM victims. It is my hope that someday this disease can be cured and that TM patients and their problems will be understood by the medical profession.

One last note. On every occasion of my seeing a new doctor or specialist, I have had to EXPLAIN to them what Transverse Myelitis is! They don't have a clue about it. I had to fight for my disability benefits from Social Security and a privately held long-term disability plan, because no information was available to them on TM so they assumed that it was a made up disease and that I wasn't truly disabled. Once I asked the head nurse at the rehab hospital for some printed material on TM and she said to me "Oh, TM just means that we don't know what's wrong with you; It's a diagnosis we use when we don't know." Until I found your Association on the Internet, I had no place to go to get ANY information whatsoever on this disease. Even my neurologist was unable to give me any information, pamphlets, etc. He said that the disease was so rare that little if any information existed. I have only once met another person with TM and she was not willing to talk to me about her situation. She was 16 years old and had pretty much had a full recovery. That's all I knew about her. It has been so frustrating and isolating to have a disease and not know anything about it other than what you're suffering with. Thank you so much for the TM Association. I feel like I am not alone now. I was 48 years old at the time of diagnosis. I am now 54.

I know that this story is long and I apologize for that, but it is all pertinent to my situation and who knows, it may reflect the same problems others have faced.

Joyce Chandler

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