#1 The Beginning (February, 2002)

              I get asked a lot what's going on with me.  I know people are genuinely concerned for the most part. Usually I brush it off or change the subject.  I do this because I am a very private person, because it makes me sad to think about it, and because its really hard to explain.  But sometimes I hear what people think is going on or what they've heard is going on and that's really difficult for me to hear. I dont want people to assume or try to guess whats going on so rather than explain it to everyone separately, I'll explain it here. Sharing this makes me feel extremely vulnerable, but I hope my story will help others who are dealing with hard things in their own lives and help me to find peace as I continue on this journey.
             One thing I've learned is that we all have different challenges as we go through life, but the feelings that these challenges bring are the same. Feelings of loneliness, hopelessness, loss of control, dispair....But on the other hand, these challenge have the ability to bring us gratitude, a love for life and those around us, greater joy than was ever possible before, and a strength that could never be achieved without such hardship. Everyday I choose which way to feel and sometimes when the bad feelings threaten to snuff out the good, I just hold on for dear life and wait for the storm to pass. You see I will not let this tear me apart, I will fight every step of the way to choose happiness over dispair and hopelessness. I will emerge brighter and stronger after each setback, devestating as it may be, and choose to focus on the positive and the growth that life brings, I hope you will too.                                          
              My first sign of trouble came a little over eleven years ago and I didnt even see it as trouble at the time. Prior to this point, for the first 20 and a half years of my life, I had experienced nearly perfect health and I took pride in that fact.  I remember saying at times, that I had never been to the hospital or emergency room (except for the one time when I tore my hamstring sophomore year, but that's another story). As a child I fit in with the other children, never struggling to keep up in anyway.  In highschool, I was as involved in as many activities and athetics as I could possibly be. From volleyball to track, cheerleading to drillteam, class leadership positions to youth government and business professional of America.  I did everything and I excercised several hours a day and never felt any struggle to do so. Oh how you notice what you once had when its taken from you so suddenly.
              As I moved on to college, I continued to be active and content as I was able to attend classes full time, work part time, and spend time with amazing people who I will never forget. During my second year of college, I met my husband, Matt. I knew immediately that he was the one for me and he still is. He has been there for me every step of the way and I love him more than I can say. Life has a way of counteracting the bad things that happen with really good things and Matt has been my constant source of light in the darkness that I've experienced. I would choose to go through it all again just to have him in my life.  Look for the good in your own circumstances. Its always there somewhere. Shortly after I met Matt, I got my first taste of what it feels like to lose your health, but I had no idea what was still to come.
              I was back at home, living with my parents for a couple of months before Matt and I got married.  The first thing I noticed was the fatigue.  I remember fighting to wake up in the morning to go to work.  I realize a lot of college age kids don't like to wake up in the morning and I really didnt like to either, but this was different.  I remember being dead asleep, but being aware that I had to wake up to go to work, and literally not being able to wake up. It feels like you're trapped under a thick haze and you cant push through it or get out of it.  Waking up involves fighting against this haze until you finally break the surface and wake up.  As you wake up, the haze is pulling at you to come back and you have to give it everything you have to wake up. Once you wake up, you have to fight to stay awake, you feel like you havent slept in days and its a fight throughout the day to stay awake and function.  The thought is always on your mind of when you can go to sleep again. You never feel rested.  This was my first taste of what fatigue really is, it was real and outside of my ability to control. I couldnt work or exercise, it would have been truly devastating had I know that I would still suffer with it eleven years later.  Within a couple of days, I noticed the glands in my neck were swollen and bulging out of my neck like Frankenstein.  My mom took me to the Dr and it was an easy test and then diagnosis of mononucleosis. I talk about the diagnosis because it was the first and last concrete diagnosis I would get over the next eight years.
              I had heard of mono and known people who had mono.  I wasnt too worried about it. The doctor said I had to sleep a lot and not overexert myself because mono attacks your spleen and there's a risk of rupture if you overdo it.  He said it would last for a few months and then I would be back to normal.  I was told that its a virus and there is no treatment for it other than rest.  I thought I would be fine, I didnt know that this was just the beginning.