Fine just the way I am. Living with lupus.

In 2003 I started college in Fort Collins, Colorado, at CSU. I grew up across the Rockies in Grand Junction, which was about 6 hours away. My boyfriend had started classes there the year before and I had fallen in love with the area. We had broken up before the end of 2002, but I still wanted to go that direction to study landscape architecture. 

Being a poor college student, I was attending class and working as much as I could. The second semester there I began to have issues with my hands and wrists. Most days they hurt, but some times my fingers would not bend well. After finally "locking" in place for a few days I decided I needed to go to the doctor. My family doctor was hundreds of miles away, I didn't have insurance- it was pre-ObamaCare. The physician on campus checked me out and decided that I had carpel tunnel that needed surgery right away. I went home, kind of freaked out, and called my mom.  He had given me an anti-inflammatory to get through the semester. My parents and I were confused. I didn't work with computers. I wasn't a "gamer", or a seamstress, mechanic, nor did I have any other profession that was likely to lead to that outcome. So we decided to wait a while to see what happened. 

Within a month I was back in the health office. I was assigned a new doctor, and I was really worried about changing. It ended up being a great thing! This new doctor ran blood work and did an x-ray. When the results were in I was called back in. She told me that I most likely had rheumatoid arthritis and asked me about my family history. I had never been sick and I had no idea, so we called my mom. By the end of that call we were all on the same page, and pretty sure that was the issue. She referred me right away to a rheumatologist for further testing and to seek treatment. 

This was the beginning of my lupus journey! It was  a life changing event. Throughout my young adult life I was independent, strong willed, driven, active. The diagnosis was scary.  I thought everything about me had to change. Lupus has many different symptoms, that vary by each case. Mine had joint pain and swelling, swelling of the pericardium, sun-sensitivity, and skin rashes. Outdoors was my life! I rafted the Grand Canyon after I graduated high school! I played and coached soccer! I played the clarinet. None of these were things I could do BECAUSE of the lupus.  That was 2004.

Throughout the years my lupus has been found to be more than "just" lupus. I have Mixed Connective Tissue Disorder (or Disease). That really means I have SLE (systemic lupus erythematosus)  and all of the other related autoimmune diseases. I share symptoms with Rheumatoid Arthritis, Psoriasis, Scleroderma, and many others. It also means I am likely to respond to their treatments as well. My lupus has "mutated", as I call it, many times. It changes it's target in my body. The joints, skin, and heart have remained constant, but liver involvement comes and goes, the lungs and vascular system become involved, skin reactions have changed, and I have developed excessive scaring in the esophagus. The biggest change in the disease has been the development of Pulmonary Hypertension.

Ten years after diagnosis, and my life HAS changed. But not all for the worse. I have to take care of the lupus. Sunscreen, medication, temperature regulation, and rest. I have tried many drugs. Prednisone, Plaquanil, Benlysta, and Cellcept are the current cocktail. Methotrexate, Cytoxin, Humira, gold pills, a pain medication that quickly taken off the market, vitamins, NSAIDS, and things I can't even begin to remember were used at some point in the treatment. That isn't the change that I am grateful for. 

After grieving for the loss of life (as I knew it, anyway), I embraced the life that lay before me. It was an opportunity to slow down, to develop a new perspective, and to adjust my priorities. I have become more empathetic, take life slower, am grateful for the little wins. But most importantly, I realized health is more than just physical. Total health is so important when living with a chronic illness, I nourish my heart and mind as well. I took time to get well, but then I started taking college classes again. If I had trouble, I would stop the next semester and take time again. With enough time I volunteer to keep my heart busy. Most recently, I have started taking leadership classes; learning advocacy, public speaking, and creating a community program, through Colorado FLTI.  

My diseases have changed me. I can't do what I used to, no rafting, no soccer, no hiking. I can't think as fast as I used to, and I definitely don't have the stamina. But now I have time for the more important things in life, like water gun fights with my nephew, and fairy gardening with my niece. Yeah, I wouldn't change my life for anything in the world.

For more information, visit PHA's lupus and PH resources and the Lupus Foundation of America website.