I come from a large, noisey, strange, mixed up, unusual family. Before mom died she was the one who held everything together. She was the glue, she was my dad’s filter, she was my rock. Mom was the center of our family. It’s so weird how, in one day, one instant, all that can change! But when she died, on that day in February 2007, everything in our family, our relationships our lives changed forever.
There is no question that we love each other. We do. There is no doubt that we each admire different things about each other, we are proud of each other. Most of that is unsaid. Most of that is kept inside, privately hidden. There are moments, those moments when we all sing together, like at mom’s funeral, or the first Christmas after she died. It’s not often that we are all together at the same time. So, when we are, we sing. I guess music is the one thing that has always drawn us all together. It’s the one thing that we all have in common, a true and honest love of music. And we have passed that love down to our children.
It has been said, through out the history of my family, that we are related to the Von Trapp family from the sound of music. My Grandma’s last name was Trapp (the von was dropped when they came over from Germany). And I guess musically it wouldn’t be hard to believe that we came from that line!
When I was 16 years old I, well we recorded an Album. We were part of a band called Nehemiah. We were based out of MN and I guess in the christian music circle in the midwest we had our share of fans. I sang, along with my brother and a friend of ours. My other brothers played drums and bass guitar. My sis in law played keyboard. It really was a family group. That was an amazing time of my life. But it was also during those years that I knew, in my gut that there was something wrong with me. Something inside of me said “You are not healthy. There is something not right.” I began having spells where I would feel faint, I got terribly sick when ever we did out door concerts. Traveling was hard for me. I was really just a kid but I was tired all the time. My body ached like I had the flu. Most of the symptoms I kept to myself because I didn’t want to burden my parents, and honestly I was a little embarrassed. I didn’t want to be thought of as a hypochondriac. So, I just kept singing. But, each time I got up to do a concert it got more and more difficult for me to make it through the whole concert.
I did a lot of praying, a lot of deep breathing, drank a lot of water during concerts. And at one point I remember there was a stool available for me when I needed to sit down. I was afraid, and I was in denial. I had Lupus! But I wouldn’t be diagnosed until 20 years later.
Dating was difficult for me. I did date. But, I had so many medical issues that I was afraid to really let anyone know how I was feeling or what was going on with me. I had stomach problems, so eating was never an easy proposition. I felt like I never could really be myself. I had to pretend to be this healthy young woman, like all the other girls. When really, I felt like I was aging way ahead of my time. And I didn’t know what was wrong with me.
When I started dating my first husband, I made a trip out to AZ where he lived and spent some time there. By the time I made it back home to MN I felt like I was going to die. I went to the doctor and they determined that at that point I had Valley fever ( a strange desert illness gotten by breathing in a fungus) and mono. I thought that certainly I could not have been suffering from those two illnesses for all that time. They also said I was pretty anemic so I was treated for those things and sent on my way. I still didn’t get better.
I went through periods of cordisone shots for my throat which was forever closing up so I couldnt’ sing. I took muscle relaxants for pain, I had knee surgurys, i went to chiropractors. Nothing ever helped me. I wondered if I was going insane.
Then I got married. Shortly after our honeymoon I found out I was “surprisingly” pregnant. It was a bit of a shock. We weren’t planning on having children that quickly, but I got used to the idea and started preparing for our new arrival. And then, almost as quickly as the pregnancy happened I lost the baby. I was devastated and in shock. It hurt so much. My soul ached. I felt as though I would never recover from that intense sense of loss. And I’m not sure that I ever really did, before I got pregnant again. This time, the pregnancy lasted. But it was not without it’s problems. I had my appendics out at 5 months, and then when that actual delivery time came, I, along with my precious baby, almost died. After 36 hours of labor, 2 blood transfusions, stomach drains, antibiotics and prednisone, I finally had my little angel. But still no one could tell me what was wrong with me.
I lost another baby, and had two more children, again not without problems. i still suffered, feeling ill almost everyday. The heat and sun seemed to affect me more than any other person I knew. I felt like a whimp and so very self conscious. My self esteem plumeted and my weight increased. I felt like there was no answers for me. There was no normalness that would ever happen in my life.
Then after 13 years of marriage, my husband and I got divorced. And I was alone. Jobless, and scared to death. I knew that there was something not right going on inside my body. But I had no time to deal with that. I had three kids to take care of and I needed a job. And I found one. A good one. A job that I really enjoyed and I was good at it. But, along with that job came flourescent lights and unbelieveable migraines that were paralyzing to me. But I didn’t have time to be sick. I didn’t have money to miss work. I had to keep going.
I met my husband on the internet. We fell in love and two years later were married. We blended my three kids and his six into a huge, loud, crazy family. We are certainly not without our problems and struggles, but I am so in love with my husband that sometimes it hurts. Then the dam broke. I was diagnosed with Lupus. It was a fluke really, the way I found out. My brother had some problems with blood clots in his leg and found out that he had a rare blood disorder that was extremely hereditary. My dad had many blood clots over the years, many heartattacks etc so my brother’s doc suggested that all my siblings and I get tested. So we were. I had not one but three blood clotting disorders. A red flag to my hemotologist. So further testing was done, and I got a call. “You have Lupus.” I was stunned. I didn’t know much about lupus, except that Dina Shore had it (did I just age myself a lot?) So, I read up on it. And wow did all the peices of the puzzle start fitting. A diagnosis on one hand is relieving. But on the other, this diagnosis required a complete change in how I live my life. And change I have. And my kids, my husband, everyone in my life has had to learn to adapt to those changes. Along with the diagnosis came depression, sadness, a feeling of “my life is over”. But, as I have lived with, changed with and grown to know my disease, I have learned that I am not done living. I won’t let Lupus make my life less then it can be.
I have learned that slowing down can be good. Taking it easy on days that I need to, makes other days so much better. Staying out of the sun is healthy. And I really don’t look that great with a tan anyways. Sure, there are times when I wonder “why did this happen to me?” Then I rethink. This has been my path for a reason. And daily I am learning and growing and sharing about life with lupus. It’s not a bad life. It’s just a different life. It’s my life….or something like it!