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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. 

POTS Saved My Life


By Lindsey
October 2008

I haven't had the easiest life.  I’ve moved from place to place, scared my mom would get arrested for drugs.  Every time my dad got out of prison, I would have hope again that I had someone.  It always seemed that once I believed he would be there for me, he would do something so stupid and selfish and get sent away again.  So I began to rely on myself at a very young age.  I would do everything for myself and just appreciate it if I got some help.  I would try to not ask for much from my family and friends. 

As I got older, things got really stressful.  I became really upset because I never got any attention. Being shy didn't help.  All the people who smoked weed and drank had a group, and they all talked about the fun, yet stupid, things they did during the weekends and on vacation. So I was interested.  I thought it would be a way for people to notice me.  At this time, I was living with a family member, and she was throwing me my first big birthday party.  She got drunk and went out to party after we had cake.  She had bought a lot of alcohol.  So I had all these people over and got a little excited.  I started to drink and offered some to the guests at my house.  I got trashed.  I know I loved the attention from the guys at my house, and because I never really had my dad, it just gave me a feeling like a Band-Aid over my broken heart.  Then, one person would tell another that my house was the place to be.  My family member worked graveyard shift, which worked out great for me because that meant everyone could party with me.  

So a few months passed, and I really liked all this new attention.  Soon enough, my guardian knew I was drinking but did not mind much, as long as I kept myself out of trouble.  So since she did not care, I think that kind of hurt me because I wanted that attention.  I wanted someone to be my parent.  So I started depending on guys to get the attention that I wanted.  I would make out with other girls to get them to notice me.  I began having sex after a situation that happened during spring break.  My life started going down the drain.  I was becoming what I fought my whole life not to be-- my parents.

I started getting dizzy in gym class. Then, one day I smoked weed.  I did not want to, but I am not good with peer pressure, so I did. My heart rate started going 180 bpm.  The girl I was with would not take me to the doctor.  I told her to just drop me off, and I would say that I smoked it alone.  I kept begging her, but she would not take me.  I went home to my Christian guardians. I told them that my heart just started racing.  After that, I was sick all the time.  I eventually had to quit school, work, and my social life.  Every time I tried to do anything, I would always get sick.  It felt like I was going to pass out, and my heart would race.  I could not breathe, but people would just tell me I was fine-- that I was being a hypochondriac.  I knew that I wasn't. It would make me so frustrated. Eventually, I got scared to be home alone.  If I was awake and knew I was alone, I would have a panic attack.  I was so scared that I was going to die.  It seemed like every time I went to the ER, I would start feeling okay again.  

Then my family doctor finally sent me to a neurologist.  He sent me in to get a CT scan and an EEG.  With the EEG, they said my beta waves were high, but did nothing.  I thank God for the lady who did my CT scan. She actually had POTS.  After I told her all my symptoms, she looked as if she was going to cry.  She told me that she had had it for eight years, four of which she was undiagnosed. She gave me her specialist’s number, and finally, after 10 months of being sick, I got in to see this doctor.  He ran some tests on me and told me that I had POTS.  I was happy to know that I had a diagnosis, but I was scared about it.  

I just started my medication today, and I am going to see what happens.  I think this was a godsend.  God has helped me so much.  I realized what sad people I was hanging out with.  I realized that I was poisoning my body for a little attention.  I realized that I changed myself just to be accepted by shallow people.  I realized so much from this experience-- especially what an idiot I was.  My life probably would have turned out exactly like my mother’s life.  I love my mother with all my heart, but her life is not the best.  I thank God for helping me see things clearly, and I know when I am ready, or if it is a purpose in my life, He will make me better.  I could not have been so strong without my boyfriend.  He is the love of my life.  He has been there for me more than anyone in my entire life.  He is my angel. POTS saved my life.

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