MCTD & Me
Mixed Connective Tissue Disease (Systemic Lupus Erythematosus, Scleroderma, and Myositis): A Blog About Chronic Illness and One Determined Woman
A woman with sunglasses standing in front of a church with a sunbeam shining down on her.
Hello
My name is Cheryl, and I have Mixed Connective Tissue Disease (Systemic Lupus Erythematosis, Scleroderma, and Myositis). My life was turned upside down in February 2017 when one night with a small fever turned into three hellish months of rapid physical decline, extreme pain and constant fear. Since then, I have spent my days learning how to live a happy and full life despite the limitations that my illness brings. There was a steep learning curve for me, and I still struggle to maneuver around the uncertainty of chronic illness. Fortunately, I have a wonderful family who loves and supports me. I also have a phenomenal medical team who listens and cares about me.
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I live a quiet life. My husband is the smartest man I have ever known. He is kind and funny and has an impeccable sartorial style. He is my superhero. My daughter is the sweetest soul in the world. She is smart and artistic and also has a fabulous sense of style. She is my inspiration. We have two dogs: a Miniature Schnauzer who believes she is a princess and a Lab mix who believes he is my nurse. I have a world-traveler sister who is always looking out for me, and I have family who have given me a lifetime full of wonderful memories. I love everyone listed in this paragraph with every fiber of my being. If nothing else, I want this blog to memorialize how much they mean to me, and how much they have helped me.
I had to leave my dream job once it became clear that I could no longer work safely or accurately. I wanted to write this blog to talk about my journey with chronic illness. I hope it can provide some entertainment to you if you are also struggling in your journey!
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My main maladies: Heart failure, lung disease, irritable bowel disease, dysphagia, muscle weakness, fatigue, brain fog, nausea, degenerative disc disease and scoliosis.
My Story
It was a sunny Saturday afternoon right around Valentine's Day 2017 when I took my young daughter and her friend to a kid's event at the mall. The weather was beautiful and the mall was filled with the animated energy that only a compact area packed with excited little kids can generate. I was having so much fun! I developed a small fever at home later that night. Of course I would get sick being around all those kids. I took my aspirin, went to bed, and was fine by the next afternoon. I went to work the following day with nothing more than a terrible cough. My boss told me to go home, and I actually stood in the doorway and argued that I was fine, that I had been fever free for over twenty-four hours (just like daycare requires), and that I could still work. Yes, I'm a Type A personality. I was sent home nevertheless. I plopped down on the couch irritated because I wasn't sick enough to use a sick day. The next morning, however, I was feeling really tired. Still on the couch, I called in sick and slept the rest of the day away. The morning after that involved another call to the office because I was still so tired. I didn't feel sick, though, just so impossibly tired. I knew I would need a doctor's note so I dutifully made an appointment at the pharmacy's clinic for the following day. I never made it to the clinic. Every time I tried to get off the couch to get ready, my heart started pounding like it was trying to beat out of my chest. It felt like it was beating sideways and diagonally. After three tries, I told my husband I needed to go to the emergency room instead. This is when everything changed. I was admitted and kept overnight for observation. They ran all kinds of tests but had no diagnosis. One nurse did ask, however, if I had connective tissue disease. I was given the option to be released the next morning or stay for an additional night of observation. They could see that something was wrong but didn't know what. I chose to go home, and I spent the next several days sleeping. I only woke up to use the restroom and maybe drink a nutrition drink. I had no appetite, a low fever, and severe night sweats. My body got weaker and weaker. In the week's time from when I was discharged from the hospital to the time I followed up with my doctor, I had lost 10 pounds and could barely sit up, stand or stay awake. They sent me to an oncologist. After several tests and a very welcome determination that I did not have cancer, he sent me to a rheumatologist. I was lucky in that my illness was raging so my symptoms were very visible. He suspected undifferentiated connective tissue right away and sent me to another rheumatologist for a second opinion. After about 5 months from my trip to the mall, I had a diagnosis. I had lost about 25 pounds and looked like I skeleton. I was so weak that I couldn't roll onto my side without help. I had very vivid and sometime terrifying dreams. But I had a diagnosis, an amazing support system and sheer determination.
This blog will recount more about my early days and how I fought my obstacles to get back some semblance of my former life. It will also discuss the mental and emotional challenges that went along with facing such life-changing events. As I continue on my journey, I hope to share new tips and tricks that are helping me. There is so much that goes along with having a rare disease, specifically, and chronic illness in general. Whether you are a zebra, a spoonie, a warrior or an interested party, please follow along as we go through this journey together.