As I was rereading Part 1 of my story I realized that I left out huge chunks of my life.
I was always a “sickly” child. I always came down with everything and got sicker than everyone else. The first organa that began showing problems were my kidneys. I had bladder infection after bladder infection when I was 12 or so. Ends up my urethra was bent and had to be repaired. I know you are probably wondering what the heck that has to do with dyautonomia, but here’s the thing: Dysautonomia is when your involuntary nervous system doesn’t work (I’m going to go into more detail about the actual condition later) nothing works. It affects every single part of your body. I can remember hitting puberty and having horrible periods from the beginning. Horrible cramps and bleeding would keep me in the bed for days and days. I was always anemic and needing supplements. I can remember not having regular stamina. I could never run as far and as hard as my friends… I WANTED to but just physically couldn’t. I don’t want you to think that I was bed bound for my childhood. I wasn’t. In fact, I had a fabulous childhood, but looking back it’s easy to see how the dysautonomia affected me even then.
Once the teen years really got going my symptoms got worse. My fatigue was unending and crippling. Every Saturday I would sleep until 1 or 2 in the afternoon. I was always tired. My daddy used to get so mad at me, because I would go out all weekend and then not be able to go to school on Monday mornings. I wasn’t playing hooky. I seriously could NOT get out of the bed. Nobody understood why, and they all thought I was making it up to an extent. It was the beginning of my senior year when things really began going downhill. I caught mono from kissing my stupid boyfriend at the time. Mono. Regular old mono that most people get at sometime in their lifetime. Most people get over it. I didn’t. It went on and on and on and on. At this time my sister Lee was working for a new doctor in Jackson. Dr. Thomas Kessler. My hero. He was the first one who got me…REALLY got me. He knew I wasn’t making it up. He spent the next month running every test known to mankind. That man is so smart and was so far ahead of his time. He wouldn’t rest until he knew why my symptoms refused to go away. I still remember the day he called us to come into his office for the results. He sat across that desk from me, and said you’re not crazy. You are a very sick young lady. You have a heart malfunction called Mitral Valve Prolapse and Epstein Barr Viral Disease. Huh? What the heck is that??? My immune system has always failed miserably. My body couldn’t fight off the mono and it turned into a long, lingering, life crushing version. My fatigue was horrible, and I couldn’t function. The faulty valve made it all worse….. I couldn’t get over it. It was so bad he almost didn’t let me go back to school to complete my senior year. It was October, and I was devastated. He finally agreed that I could go to school daily until 1:00, but then I was to go home and go to bed. I remember coming back to school after missing over a month… It was always so awkward to come back after a long absence. I would get so stressed and anxious that I would physically get sick. The day I returned I walked into my honors English class. I will NEVER FORGET what my teacher Danny Chancey said to me: “You may fool other people, but I’m not falling for it. You can’t pull anything over me. I will fail you.” Can you imagine?? I felt like throwing up in my desk. When I got home that day I was devastated and told my mama that I just wasn’t going back. She finally got what happened out of me. That 5 foot tall 98 pound woman was on fire. The next morning she marched up to that school with me and demanded to see Mr. Chancey. She showed him all my medical reports and told him that we wouldn’t be needing his help. She made the counselor (sweet Mr. Beverly) totally rearrange my schedule. He was so helpful, and I actually credit him with my completing high school at all. Somehow I managed. I remember at the end of my senior year being hit with horrible pain in my side. I thought that I was dying. Mama was out of town, so Jenny rushed me to the hospital. Both my ovaries were covered with cysts (this is also an effect of the dreaded d word). A doctor told me during that visit that I may never be able to have children. I was 17.
That Epstein Barr Viral disease hung around all during college. College was easier, because I could take late morning and afternoon classes. I didn’t overwhelm myself with too many classes. I kinda felt normal. :) Every now and then the D word would come raging it’s ugly head, and I’d have a horrible spell….At this time we thought it was just the EBV and my heart defect. I was still having horrible periods, and I was overcome by horrible migraines. I was always tired. Always. Feeling bad had just become my normal, and I learned to work around it. I was always a wild one in my teen years. I would drink and get into all kinds of trouble. Looking back I think it was me unconsciously fighting this condition. Maybe I was numbing myself… I don’t know. I can remember being drunk and my friends making me take my “heart pills”. Sometimes I wonder how I survived, but I did. I made it though college…. This is when the total jackass husband comes into play. You think it couldn’t get any worse?? Just wait.