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  • The Member Stories section of our site is a place where members can submit the 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. 

I Didn’t Ask For This Life


By Vanessa
November 2005

My story begins in October 2004. I was driving along a desert highway, and then my life got turned upside down. That was the beginning of my trip down a road that I had never traveled. A road where I was always so fatigued that I could not get out of bed by myself, my blood pressure was so low that I either fainted or felt like I was going to faint, and a long list of other symptoms that I had no idea was connected to the same problem.

I had a car wreck that should have killed me, but miraculously I only had a few cracked bones and a severe concussion.  I was hit from behind by a woman that was trying to kill herself and take out as many people that she could along the way.  I was going between 50 and 55 miles per hour, and the witnesses said that she was going in excess of 80 when she hit me. The ambulance took me to the hospital, and they could not find anything but a few cracked bones or, as they said, non-displaced breaks. So, they were going to let me go home. When I tried to sit up, the room started spinning; and I got violently ill, so they kept me in the hospital.  It was only supposed to be overnight for observation, but three days later they finally let me go home.  I found out on the day of my release that my blood pressure had been dropping dangerously low, and that is why they kept me so long.

I thought everything was ok.  I assumed that it was due to the car wreck.  So, I was not concerned. I went to the orthopedist, and he had me doing my own physical therapy, which went well until about February 2005.  I got to where my heart felt like it was going to pound out of my chest.  I could not go on my walks like I had been doing every day since October, and my heart was always beating weird. I thought that maybe I was getting a virus, which even that was strange for me because I almost never got sick. Maybe I got the flu once every 3 or 4 years, but I rarely even got a cold. My biggest medical problem was seasonal allergies. I had not been to the doctor for anything medical, other than allergies, in over 20 years.  I never could see going to the doctor when you weren't sick. I started having headaches everyday, sometimes I would wake up shaking, and I could not make my hands stop shaking. I would always call it a case of the nerves. It seemed like anything that I ate would upset my stomach, and I stayed nauseous all of the time. I still thought that I just had a virus and didn’t go to the doctor.  My symptoms kept mounting up. My eyesight would gray out totally or just the peripheral vision would; I stayed constipated; and I would have terrible mood swings where no one wanted to be around me.  I couldn't get the house the right temperature.  I was either too hot or too cold.  I would have terrible dizzy spells and walked like I had one too many.  If someone touched me like a love pat, it would actually hurt.  Light would hurt my eyes horribly, especially fluorescent and the sun.  When I was in a store, I would always keep my sunglasses on.  My memory seemed to be getting worse, kind of like a brain fog.  I would be carrying on a conversation and just lose track, or I could not think of the word that I was looking for.  Odors would drive me up the wall.  I was staying nauseous all of the time. Every time that I would try to stand up to do the dishes, I would get so fatigued that it felt like my legs were Jell-O.  I could not do my physical therapy any more. Sometimes I could not even go to the toilet.  I would have chest pains so bad that I just knew that I was having a heart attack.  

In April, my family told me that I had to go to the doctor. When I went to the doctor, I found out that I was having severe problems with my blood pressure. I thought that it was just because of the accident, but I was wrong.  My blood pressure was 82/43 in the doctor’s office and very weak, and he put me in the hospital for some tests.  While I was in the hospital, my blood pressure would drop even further and then it would come up.  Even after all of the tests, he still didn't know what was wrong with me.  I ended up in the hospital three more times in May and once even in ICU, because my blood pressure was so low. On the third time that I was in the hospital, my doctor said there was nothing wrong with me and that I should get a job, stop worrying about my health, and go to a psychiatrist. So, basically he called me a hypochondriac.  My family said that was ok, they were going to take me to another doctor anyway. 

So now more doctors. My primary sent me to a Cardiologist because some of my EKGs showed bradycardia.  Then all of the big time tests began.  Before I saw this doctor, I had more blood tests then the law should allow.  I had a nuclear stress test, cat scans, x-rays, wore a halter monitor, and even had a cardiac angiogram, which is very painful and scary.  All of these tests for a woman that had not been sick in many years. When I went to the Cardiologist, I had it in my mind that maybe I was crazy, so I was really apprehensive, but I went for my family’s sake. He then started having all of these tests run.  Some of the tests I had before, but he had them done again at a different hospital because he did not have any faith in my hometown hospital, but then neither did I.  Every test came back negative. Then he had a tilt table test done.  It came back inconclusive. But he was putting all of my symptoms together and told me that I had partial Autonomic Dysfunction. 

I didn't know what it was or how serious it was until I got home and researched it on the internet. Then I got real scared.  At that time, he put me on Florinef to help raise my blood pressure.  I was on it for a few weeks and my blood pressure was still dropping, so he added Iodine and told me that I needed to see a neurologist. Well, I had my appointment with the neurologist.  He confirmed that I have multiple systems Autonomic Dysfunction.  He is now researching specialty tests to see if he can come up with what is causing this.

There is no history in my family of any neurological problems, and since I did not injure my neck he does not think that the wreck caused it. He said that it could have triggered it, or I could have been having mild symptoms before and just ignored them.  In this journey, I also found other medical problems that I had and did not know about; however, none of them are fatal.  It was an eye opener when the doctor told me that I probably had a maximum of 10 years to live.  However, I told him "Not Me;" I am going to be the first to live longer.

I am trying to adjust my lifestyle to make it more comfortable for me, and I am spending as much time with my family as I can.  I have 2 beautiful grandsons who I adore; a husband who has stuck by me for 33 years; and a daughter, son, and son-in-law whom I love very much.  I have made a list of things that I want to do, accomplish, or go to while I can.  I plan on doing everything on that list. Who knows, I might even add to the list. I plan on enjoying every minute of every day to the fullest. No, I didn't ask for this life, but it is the one that I have, and I am going to make the most of it. 

If you know that something is wrong with you and it is out of your control, keep searching for the reason. Don't believe the doctor if he tells you nothing is wrong with you, and things are happening to you that you can not control.  Keep searching.  It may be nothing, or it may be life shortening.  Find a good doctor, one who cares about their patients, and don't give up. It has taken four doctors validating my condition before it finally hit home, because I had two doctors tell me nothing was wrong with me. 

I have accepted my disorder or whatever you want to call it, but I am not giving up. I have applied for disability, now have a handicap sticker, and even go shopping with my daughter every week, and I never liked shopping before.  My son is moving in with us to help take care of me. He is single and wants very much to help me.  I have to wear Depends, and I have to watch what I eat and drink. The doctor had to take me off of the Florinef and the Midodrine until after I have back surgery because, mixed with the pain pills that I have to take for my back, it raised my blood pressure so much that I had a mini stroke.  My neurologist told me that after I have recovered from my surgery he wants me to take as little medicine as possible.

The pills were just aggravating the symptoms, so I am only on 8-10 pills a day instead of 19-22.  I am adjusting my life to fit my needs, and I am enjoying every minute of every day.  I have to take lots of naps, and shopping really tires me out, but that is what the motorized carts are for.  

No, I didn't ask for this life, but I am making the best of it.  When I do go, I have already told my family that I do not want a wake.  "I Want A Party."  I want a big celebration of life with lots of upbeat music. I want that time to be laughter and joy, not to mourn me but to celebrate my life. My faith keeps me strong, and the love that I give and receive keeps me going.  I just hope and pray that anyone who has this problem has the support they need to not only keep going but to enjoy their life while they still can.  I know that there are going to be days when I can't seem to cope, but I will get through those too. 

Anyone who needs someone to talk to or just to listen to them can email me. I will talk to you, but most of all I have a big shoulder, and I care. 

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