I am a 59 year old woman living in NH with my husband, our 90 lb. lab "Winston". and a new kitty, "Taz", short for Tazmanian Devil (yes, he lives up to the name) We have 2 sons and a daughter and 3 granddaughters. Until I became ill I had a very successful career with a local newspaper. Dysautonomia, coupled with a deteriorating spine put an end to my career. I was finally approved by SS and I urge anyone out there to not give up the fight when they first refuse you. I was finally approved after submitting a letter from my doctor who explained the illness and the effects on my day to day life. The judge hearing my appeal said it made all the difference to him. He said that reading my doctor's account of my need for rest during the day and the many years that I struggled to continue working made him realize that my disability claim was real and necessary. I hope you all have doctors that will take the time and attention that mine did.
I meditate every day and focus on the things I can do as opposed to thinking about the things I can no longer do. There is no point to that. I have been teaching myself new hobbies to replace the hours I used to spend playing softball, swimming, and hiking. Now I write, read, sew & cook and am learning how to work with stained glass. In the warmer weather, I love to garden. I spend lots of time with my granddaughters. There is nothing better to remind you of how great life is than taking a walk with a 5-year-old in the woods. Seeing the world through her eyes in sometimes all I need to make it through another week. Recently, I have been learning more about foraging and have been learning about the many ways to use the plants right outside my door.
I was diagnosed with Dysautonomia in 2012. Symptoms began the moment I woke up after a very extensive back surgery and have progressed quite rapidly. It took three years to be diagnosed after being under the care of three different cardiologists. My primary care physician first brought up POTS to me as a possibility only to be shot down by my second cardiologist who said it was "ridiculous". I was finally blessed with my third cardiologist who said "has anyone mentioned dysautonomia to you?" This wonderful doctor took the time to explain it to me and then spoke with my PCP and referred me to a fantastic neurologist who made the final "official" diagnosis. It was a frustrating three years!
I most recently have been diagnosed with Arterial Pulmonary Hypertension. Since the symptoms of APH and Dysautonomia cross over in so many areas, this was a very difficult diagnosis to come to as well. I am not alone in this. It is very common for people to live with multiple diagnosis and disorders and it can make management more difficult. But I have found that the common denominator towards a quality life, no matter what the illness, is being kind to yourself with healthy foods, rest and plenty of hydration. Finding a solid support system for comfort & understanding on the bad days and for sharing and helping others on the good days. And finding ways, every day, no matter how small, to have a purpose and live a productive life. Those are all things I can control about my life
I have been a volunteer for DINET for many years and was proudly elected as President of DINET in August of 2017. I am so pleased to have found a place to connect to other people living with Dysautonomia and I am excited to help others along their journey. I am very happy to be here.