Sandra's Story

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!