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  • The Member Stories section of our site is a place where members can submit their own stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

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Sandra's Story


edriscoll

By Sandra 
September 2001

It all started at the end of January 1999 for me. I was 55 years old. I had been working at a University for 25 years. Two of the students that worked for me came to work sick. The virus soon spread to almost everyone in our office. I was the only one that suffered permanent nerve damage. I had vomiting and diarrhea and cold-like symptoms. I lost 14 lbs. in two days. I live alone and had trouble standing long enough to get food for myself. I did not want anyone else to come in to help me and be exposed to this also. My brother would leave Seven up and Gatorade by my door so I could try to keep from getting dehydrated. I was taken to the emergency room four times and they kept giving me fluids. I was in the hospital twice - the second time for 2 1/2 weeks. I did not get any better. I was going 10 days without a bowel movement even with heavy laxatives. (I still have to take laxatives, and my life revolves around when they will work). I could not eat and was loosing weight fast. I lost a total of 55 lbs. I have since gained some of that back. I spent 4 1/2 months bedridden.

My blood pressure on standing dropped to 23/14. Several times I felt as if I was going to die. I also have trouble with dry mouth and throat, which is part of the autonomic problems.



I passed out 5 times in the beginning. I would still pass out today if I didn't carry a little stool with me everywhere. I am not able to function at all without proAmitine and florinef. It is a struggle to do anything when I am upright, as I have to sit every few minutes. I had to give up my job and I had only 2 more years until early retirement. I had to move out of state, as I need the assistance of my family. I can no longer drive. I was fortunate enough to be able to go to the Mayo Clinic and was in a study for midodrine (proAmitine). Since my nerve damage is permanent (the virus attacked the nerves) I am at the mercy of researchers to find a cure.

I think it is important for people with dysautonomia to not give up hope. Even though everything becomes an effort - make that effort. I have made new friends since this, found love, and started a new hobby (making jewelry). I try to help other people as much as possible. You can always find someone that is worse off that you! If life hands you a lemon - make lemonade!

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