I found out my second semester of my freshman year at the University of Wisconsin-Madison that I have a disease called sarcoidosis, more specifically I have Löfgren Syndrome. Löfgren Syndrome has no specific cause and symptoms can affect people very differently. The main symptoms that define this type of sarcoidosis are joint pain and swelling, erythema nodosum which is built up fatty tissue that show up on your lower legs, and also enlarged lymph nodes in your chest. All of these symptoms can be stronger and more or less pronounced in each patient, so it’s hard to compare your sarcoid to another person’s. Most people do not get treated for sarcoidosis and it tends to go away with time.
Before finding out what was wrong with me, there were days my fingers hurt so bad I couldn’t even pull up my jeans in the morning. My fingers swelled up so bad I had to take all of my rings off and my boots were too tight from my swollen ankles. There were days I was so weak I couldn’t push myself off the couch. I also had a really hard time with my breathing and I still do. Many times I was just told I was out of shape from not being able to work out, but talking and walking at the same time shouldn’t leave me completely breathless. After a series of tests, appointments, and unanswered questions, I was sent to a rheumatologist in Madison. I found out in February of my spring semester that I had sarcoidosis and immediately I was medicated.
You would think that after being diagnosed, I would feel triumph. But this was probably one of the biggest points of struggle in my journey. Knowing that many people are not medicated with sarcoidosis and I have been for almost six months straight now is defeating. It affected my life in every single way possible. I struggled with class, friends, family, and my emotions. My life was changing slowly before I got diagnosed, but once I was, things changed in an instant. I was prescribed prednisone, a drug that my 58-year-old uncle also takes, that can weaken muscles, which seemed like another step back with my weak joints. At 18 years old, I never thought I would feel like my grandma does when she wakes up. I never thought I would take as many pills in the morning as my grandpa. It was difficult to process and handle. I shut myself out from my friends because I didn’t want to bother them with all the details. My boyfriend at the time was very supportive, but I pushed him away too. The days not long after being diagnosed were difficult and dark for me. It was even harder being at school away from my family.
I try to use some techniques to stay healthy, mentally and physically. I make sure everything I do will have a positive impact on my future. Although it’s hard to keep up with school sometimes with all the appointments and long drives home, I find it is very helpful when I’m doing well in school. There is no better feeling than acing an exam or getting a good grade on a paper, especially when you had to work so hard to fit it into your schedule along with your medical needs. It was difficult to do at first, but the harder I worked on school work and the more progress I saw, the better I felt. I also tried to spend as much time getting good exercise. Exercise is difficult with my breathing and joint pain, but the longer I sit and do nothing the worse I feel. Just going for a walk on a long day clears my head and allows me to make a decision for myself. Maybe I am not healthy, but I feel good about the things in my life that I can control. Being in control of part of your life is an amazing feeling when you spend most of your time being controlled by your disease. If you’re anything like me, you start your day when you take your medicine in the morning. Every technique I use to try to be healthy comes from doing what I want to do to the best of my abilities.
I am not positive when my perspective changed, but I believe it had to do with a conversation I had with one of my best friends from home. He told me that I was one of the strongest people he has ever met, and that “no matter where this journey takes you, you can either let it build you up or break you down.” That was what I was waiting to hear. I didn’t want the sympathy; I needed someone to tell me that I was the only one who could make this a positive experience. The best advice I can give to someone who is dealing with sarcoidosis, or more specifically Löfgren Syndrome, is to find people who can help make being sick a positive learning experience. Sarcoidosis is so much different for every patient that it’s hard to compare my every day life with someone else’s. Living with a disease is a trial and error situation, you have to find out what works best for you in your life. Don’t let anyone tell you how to deal with things, how you should cope, or what they think you should be doing. You are the only person that knows your limitations. Löfgren Syndrome changes day to day for me. Today could be pain free and I could feel completely normal. Tomorrow I could wake up feeling like a bus hit me in my sleep. The truth is, not every day will be a good one and that’s okay. You just have to make sure that you go to bed on the negative days telling yourself that tomorrow is a new day and it will be better. “No matter where this journey takes you, you can either let it build you up or break you down.”
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