Ready

Over the next few weeks, we enjoyed a time of restorative relief. I had begun moving again. But it was not in the same way I once had. I was more aware of my joints than I had been in the past. They didn’t feel the way they once had. I was aware of my wasted muscles due to weight loss. I was aware of my knees that felt weak and fluid filled. But still, I was happy for a break from the pain.

My appetite had also returned which brought great relief to my Italian mother’s tired heart. She began enthusiastically making trips to the grocery store, returning to show me all of the ‘goodies’ she had purchased. She pulled out chocolate donuts, ice cream and strawberries from the grocery bags, presenting them to me with a huge grin. I smiled, pretending to be excited and feeling lucky to have a mom like her to care for me. Over the next few weeks she eagerly began making all of my favorite dishes, from baked ziti with Italian bread and salad to chicken fajitas with salsa and sour cream. I knew it was her way of taking care of me. I knew she had been so desperate to do something, anything to help these past months. I knew she just loved her girl. And so she continued. Each morning she came home from work on her break and quickly scurried about the kitchen making me eggs, toast and a fruit cup. It was nice to eat again. I had forgotten that one could even enjoy eating, as it had been such an unbearable chore over the past months.

Two weeks passed and my relief was soon replaced with new feelings of unease and a new unwanted understanding of my disease. I had avoided reading about lupus at all cost. I was not about to go online and learn about it. I had refused to look into any support groups for lupus. And I was certainly not about to buy a bunch of self help books on how to cope with the disease. I would take my pills each day, which at the age of 21 seemed like a lot to ask of a girl who had always been so healthy. That was all the effort I would offer. To me, reading about lupus felt like giving up. It felt like saying ‘okay you tell me what my life will look like’. I didn’t want to know what others would say. I didn’t want to know what doctors wanted me to know as a patient. I preferred to just not be a patient altogether!

My mom had become frustrated with me. She couldn’t understand how, being pre-med in college, I could not want to learn? Of all people, she thought I would delve into medical knowledge regarding lupus the most. That would be incorrect. In fact, I felt myself growing more annoyed with her for wanting to so eagerly learn about the disease since the very night of the diagnosis. I felt I had already been through enough. I was afraid I couldn’t handle any more bad news. And anything having to do with lupus and not being ‘all better’ was bad news. Very bad news.

The questions did soon come as much as my stubborn will tried to delay them. My mind wandered during the day and I slowly found myself wondering about the disease. Would I always be on prednisone? What are the side effects of the prednisone? Will my pain return? Will I be handicapped? Will I be able to work again? Will I ever get married? Does anyone with lupus lead a normal happy life? And so, I reluctantly began searching the website “Lupus Foundation of America”, knowing it was a reputable source. I opened the purple page to my internet browser and felt my heart race. I knew whatever words were on this page would not be easy to swallow. I knew what I was about to read would dictate my days ahead. I breathed in deep and told myself to read quickly and only for a little. Bits at a time, I began to learn about lupus. I learned it was an autoimmune disease, where the body does not recognize its own DNA. So, the body’s immune system mounts an attack essentially on itself, causing the familiar symptoms of joint pain, fatigue, fever, rash, mouth sores, enlarged spleen, anemia and hair loss. The next day I read about life with lupus and that lupus patients are to avoid the sun. I ignored this, unable to imagine what life would be like without sunbathing for hours at the beach each day over the summer. That was something I looked forward all year. I was a summer girl. I loved wearing a bathing suit. I loved swimming at the beach. I loved beach volleyball and running. I loved cookouts. I loved everything about summer. No sun? I told myself this did not apply to me. Who has even heard of a disease where you can’t be in the sun?! Annoyed, I closed the browser.

I wasn’t feeling better with any of this knowledge. It was instead creating more inner turmoil and frustration. I had a life to lead and all of this was getting in the way. Had God forgotten my plan? This was not how things were supposed to go. Would I ever be a doctor? Would I ever work in medical missions again? It felt like everything I was passionate about was getting taken away at a rapid rate and replaced with an unwanted swampy mess.

That night I found myself sneaking onto the internet while lying in bed. I opened up the dreadful purple page, feeling drawn to read more and disgusted at the same time. I read on to see the side effects of the prednisone which included increased appetite, rapid weight gain, fat deposits to the face, back of the neck and abdomen, weakening of the muscles in the arms and legs, severe mood swings, aggression, easy bruising, thinning of the skin and osteoporosis. I read on to see that lupus not only affects joints, which often need replacing, but also can affect organs (heart, kidneys, lungs and brain).

That was all I needed to read.

I closed the browser with a heavy heart, knowing that while the pain had dissipated, I really would never be ‘all better’. And for the first time, I was ready to hear that.