De Ettes Story

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Howard,

It was 1975 and I was in a bad car accident. I had a severe head injury. After a few days I became semi-conscious. I don’t remember anything really until I left to go to the Elks Rehabilitation Hospital for therapy two weeks later. I had to start with learning how to crawl again. Even though I was getting better slowly, my husband couldn’t take the way I was hurt and in 1977 we were divorced. We had two sons. In 1978, I remarried trying to replace the security that I had lost. This proved to be a terrible mistake. I had not only hurt my sons but also had a little baby girl, named Samantha, born in 1979. I was a basket case. We were divorced when Samantha was 6 months old.

Failure, mistakes, hurting my boys, especially my oldest, for this new dad was abusive to them. I was seeing a psychologist trying to get some relief. In 1981 I couldn’t talk normally anymore. It was a terrible strain to get words out and I thought I sounded like Donald Duck. This added to my downward spiral. Good mothers read to their children, right? I tried. My psychologist said that I was doing it to myself. (Globus Hysterocis) He put me in the hands of a psychiatrist and he put me on Loxitane, an anti-psychotic drug. I was on it about 6 or 7 months. Nothing helped.

My sister, living in Saratoga, Calif. called me one day and told me of a program that had been on her TV about a Laryngologist Doctor in San Francisco. He was a professor at Moffit Hospital and had come up with a cure for a difficult voice problem. She had called his office and asked some questions and she thought he could maybe help me. The nurse said they could tell if I had it by talking to me on the phone. At this point I had no confidence in anyone, especially myself. She convinced me to call and I did. They told me I had Spastic Dysphonia and on a scale from 1-10, I was a 10. I felt I had little to lose so I made an appointment with him.

He checked me over and I had surgery the next day. I was in a lot of pain in the recovery room but I was speaking. He permanently paralyzed one vocal cord. I had never heard of Botox being used. It was never given to me as an option. Dr. Herbert Dedo, the Laryngologist, told me to quit taking the Loxitane. I did and then my face and tongue started with abnormal movement. My tongue would come out and roll. I didn’t know this was happening. I couldn’t feel the movement. It was when my father told me to stop doing that with my face that I knew I had a problem other than my pain inside. It was devastating to me. Now I was a spectacle around other people.

The ST started before I took the drug Loxitane so it wasn’t caused by that. That would have been in 1981. I was referred to a neurologist at the University Hospital in Salt Lake City. He said I had Orafacial Dyskenesia. He put me on Liorasal (baclofen) and another drug that I don’t remember. The medicine did help quite a bit but then my body started contorting some. My hand would pour out a drink if I wasn’t paying attention. My body was crooked when I walked. All of these things happening on top of my extreme guilt, I worked myself into a terrible anxiety disorder. I was having panic attacks during the day and at night. It was hell for me to go outside of my house even to pull weeds in my flower beds. I drove but had blurred vision and going to the grocery store was terrible. Standing in line drove me crazy and writing out a check was hellish. I did it though. Most people with this condition avoid anyplace they may have panic attacks but I had to be that good mother. I couldn’t ask for help or it was that I didn’t know how.

I then learned what I had was Agoraphobia. I found a Dr. Hardy in Menlo Park, California. I signed up for an intensive 10 day therapy session. (Terrap) My sister from Utah took me there. I rode in the back seat for I was more comfortable there. My psychologist told me that I was committing blasphemy. I wasn’t accepting my Savior’s sacrifice for my sins and mistakes. After much prayer and pondering, I realized that he was right. I asked for His forgiveness and I started changing with the help of my Father in Heaven. I had met a man that was with me through all of this. We were friends for 4 years and then we married. I went to his farm. The quietness, the growing of crops, the early morning activity all helped me immensely. This man became my husband and was with me while I was able to get rid of all the demons of my mind and body. He died December l, 2007. We had a year together after he was found to be ill. How grateful I am for that year. We were married for almost 24 Years. After 7-8 Years of marriage, I did come down with Addison’s Disease, probably brought on because of all the extreme stress and emotional upheaval. It wasn’t diagnosed until I had turned almost black. I was in the final stages when it was diagnosed. I have a deep and abiding testimony of my Savior Jesus Christ. Without him and my husband I would not be where I am now.

My boys turned out wonderful and my daughter has been fighting Hodgkin’s Disease for the last 11 years. The Lord has blessed me to the extent of being a whole, functioning, loving caring human being. Would I say I wished I never had ST? I wouldn’t want to go through it again but I love the person I have become. I accept that I don’t look normal and it’s okay. A year after Richard’s death, I gave away his clothes and shoes, all except one pair.. This is to remind me that no one can ever fill them. To all that have this distressful malady, I say hang in there, the sun will always rise in the morning. I have found so many good, good, people through the ST program. I want to get to know more of you better. Thank you.

PS I also wanted to say that I have been receiving injections of botox in my eyes for Blepharospasm, in my lip for a nervous tic and in my neck for ST. I’ve been truly helped. I’ve also, just in the last year, received a new knee and a new shoulder. It’s a wonder what they can do these days.

I've found your web site the most helpful of them all. The way it's written really has helped me. Kristi, New Zealand