Introducing Me

Dear friends,
I have been thinking about this post for awhile. Planning it out in my head trying to figure out the best way to express my heart. First I will start by telling you a little more about myself.

My name is Ellen and I am 23 years old. I got married last spring to my sweetheart and I am from Utah. I also have a chronic illness. My whole life I thought I was normal and healthy and then when I was 18 I started getting sick. First it started with muscle pain and infections. I was diagnosed with fibromyalgia and sleep disorders. I started medications and didn't worry too much about it until I got so sick  I had to drop out of my semester of school. We thought we knew what we were dealing with when I tested positive for cystic fibrosis and got hospitalized for pancreatitis. At the time it was terrifying. I was positive that my life was over and that all my dreams were dead. While at the hospital they became pretty certain that my diagnosis was wrong and they sent me home sick and with no answers. I spent almost the rest of that year in bed. We saw so many doctors and yet no one had answers. I felt so hopeless. Others thought that it was in my head and I tried to believe that. I tried to convince myself that I was fine and that it was just a phase. I started school back up again and loved it. I am/was an opera major at the University of Utah. It was going pretty good but I was a little overwhelmed with the work load. I finally hit rock bottom when I started having seizures. I also couldn't keep down most of my food. I was hospitalized and they were yet again more unanswered questions. I felt so lost and didn't know what to do. I knew I wasn't crazy. I knew something was really wrong. Still not many people believed me. 

Finally I decided to take matters into my own hands and get things figured out. I looked up more about my original diagnosis and also did a lot of reading on the things I was struggling with. My mom and I had heard about a clinic in Salt Lake that worked with people that had Fibro and other problems. I applied to the clinic which took a lot of time. We had to get every medical record that I had and answer lots of questions. About  8 months later we got an appointment. I went and talked them through every year of my life. Every detail. It was a 3 hour appointment and I had no idea that my life was about to change. My next appointment was with the doctor that ran the clinic. Dr. Bateman. She started by telling me that I had been misdiagnosed my whole life. She had spent 3 months studying my case and knew what was wrong. 
I have Dysautonomia. Yep you've probably never heard of it...neither had I. Dr. Bateman explained that your autonomic system runs your body's functions. It communicates orders from your brain to your organs and regulates all your systems. The reason I had been misdiagnosed with so many things was because I had every symptom know to man. You could pin it on a lot of diseases but none of them explained why this was all happening. For the first time I felt so happy that someone finally understood what was going on. Someone knew that it wasn't in my head, that it wasn't my fault. What came next was unexpected. Dr. Bateman made it clear to me that there was no cure and that even treating the symptoms was sometimes ineffective. She told me that I had a choice. I could give up and decide my life was pointless or I could accept that life would be tough but if I worked hard enough I could live a happy life. 
In the last couple years I have thought about this conversation a lot. Isn't this the choice we all have? Life is never ever expected and usually doesn't go exactly the way we want it to. We can chose to throw in the towel or to keep moving. I have had many many days when I wanted to quit. I so often felt that there was nothing left for me in this life. I felt that college, marriage, career and having kids were too far out of my reach. I even had people constantly remind me of that fact. People, including myself, referred to me as broken. It took me a long time to realize that that was the furthest thing from the truth. I came to understand that my body worked differently. That I could have dreams that were just as wonderful as my old dreams, I just had to go about them differently. I learned to love my body for the way it is...at least most of the time. Ha ha I even met a man that loves and accepts me for exactly the way I am. 
Trust me my life is still far from perfect. Every day is a battle. I now have so many disappointing test results it feels overwhelming. I am on surgery number 2 for this year and I go to exercise class with seniors...senior citizens. I don't know whats ahead. And I don't need to. I know it will be hard but I also know it will be worth it. I decided to start blogging because Dr. Bateman told me that there are so many people that still believe their life and dreams are over. To those people I would like to say, don't quit. There is help and hope on the way. The life you had may feel like it's over but that's far from the truth. You will have an even better life. It may be different and you will push yourself farther than you ever thought but you will learn so much. You will learn to really love yourself and appreciate the things in life that matter. Don't be afraid to fall apart or have a bad day. Embrace them!You can do this...never ever doubt that. And never ever doubt that your life isn't worth the work or the struggle. You are more valuable than you can imagine and your story is just beginning.

I hope this is helpful to someone. I am not a writer and I am definitely not perfect so don't judge too much. I will be trying to write every week so k

eep tuning in if your interested in this sickie. ;) Much love to all of you and may God bless you in your trials!