“She begins as ancient bones and fleshes out her life from there”- Dr. Clarissa Pinkola Estes
The quote spoke to me as I read it sitting on a beautiful beach in Punta Cana last summer. I didn’t realize how true to my life it would be until I had hit rock bottom just two months later. For several years my life has been relatively stable. Good health, a nice job, a loving husband and the usual ups and downs which come from raising a family. I have been, in all sense of the word, fortunate. That beautiful stability came to an abrupt and frightening end after what seemed like a simple food allergy and ensuing rash on my face.
I had had a busy summer with trips to the Dominican Republic and Mexico. It was during my trip to Mexico that the rash showed up on my face. I went to the doctor and thought surely this would be a simple fix. I worried about my complexion and scar damage. I moved forward with life even starting half marathon training. Unfortunately, soon the rash spread from my face to the rest of my body. And suddenly, from night to day, my muscles became so weak I was not able to get dressed without taking multiple breaks. Lifting my arms was excruciatingly painful. Walking across a room felt like my quads were on fire and I was out of breath. My heart raced. My head throbbed. My blood pressure sky rocketed. What was happening??
Over the course of a month and a half I saw eight doctors including dermatologists, infectious disease doctors and my primary care physician. They ran so many tests I did not have enough veins to offer on my arms. Initially everything came back negative. Every common and rare disease that was tested came back normal. Finally my doctor ran a CK test that revealed a high level of creatine in my blood, a physical proof for my muscle deterioration and weakness but not the cause. He immediately ordered two bags of IV and I rushed to get treatment to help my kidneys process the creatine.. Still I had no answers.
Throughout all of this I was still trying to go to work. Some days I could make it for a couple of hours. Some days almost a full day. Just getting dressed and out of the door had me panting for breath. Every day, my concerned co-workers hoped that I would be better. Every day I disappointed them with my answer. Not better, still panting, blood pressure up to 180/110 at the last doctor’s visit. Coming home from work was excruciating. I did my slow walk straight to the couch to close my eyes and elevate my arms on pillows. Showering took such a toll that my husband began to help me wash my hair. Afterwards I would half lay on the bed too weak to fully climb up. My body was so exhausted I could not move. My entire body throbbed. It was that feeling of impotence that would push me over the edge. The tears would come and after a few minutes I would gather my strength to go back downstairs to sit. The nights were terrifying. I barely had the strength to climb in to bed. Sleeping with throbbing arms, heavy chest, heart pounding hoping not to have a fatal heart attack or stroke in the middle of the night.
The emotional toll of not knowing was overwhelming. I cried my way through every doctor’s appointment. I’ve always been so strong at first I was ashamed of my tears. Unfortunately, there was nothing left in my emotional tank and the knowledge that what I was going through was understandably difficult allowed me to stop feeling shame. How could you not feel vulnerable you have an inexplicable rash all over your body. Or when you wake up one day and your left arm is swollen? Or when you find a lump on the back of your head that the doctor would not even acknowledge? The lump was followed by a rash all over my head that began to scab and fall like snow out of my hair. I woke up every day hoping that I would be better. Every time I rolled myself out of bed only to find that the heavy arms and legs where still there. I felt like I was walking under 10 feet of water. I had to give myself a pep talk just to get through brushing my teeth.
Within the first three weeks I stopped researching online. My husband became the chief researcher. I couldn’t handle thinking of all of the possible horrific things that could be wrong. I couldn’t handle another panic attack another bout of anxiety. I felt like I was disintegrating at a cellular level. My energy was so low I could only focus on doing the bare minimum in my life. I mean the bare minimum. Brush your teeth, drink water, sit up and eat, get dressed, walk to the car, take one step at a time, open a door, sit down. Rest between each of these tasks. Catch your breath. I’ve always been such a positive person I had to get used to saying, no I’m not ok. No, I’m not better. No, I still don’t know what is wrong. No, the doctor doesn’t know yet.
Having never faced a medical crisis with such alarming symptoms and lack of answers left me completely unprepared to cope. I began to look outside myself and think about all of the people in this world who face a chronic illness. People who may or may not have the support system that I have. My husband and mom tending to me, washing my hair, putting on lotion, taking over the daily chores. Transportation, access to good doctors and the ability to pay the doctor’s bills. A boss and co-workers who completely understood and supported me. How many people struggle daily with these types of issues? How many people feel hopeless in their situation? How strong must they be? Even before I received my final diagnosis I counted myself so very lucky for this support system.
After yet another day of excruciating pain and fatigue I was finally too weak to drive myself home from work and ended up in the ER. They had no answers for me that day but they did refer me to another infectious disease doctor who found the dermatologist that would finally give me my diagnosis. The IV I got in the ER strengthened me just enough to be able to drive myself to this last doctor’s appointment. I honestly don’t know if I could have made it any longer. I remember driving there and feeling my heart throbbing and my neck being so painful. I walked ever so slowly behind the nurse and could barely get myself on the doctor’s table. I was so tired I had to lie down in between seeing the nurse, the intern and finally my doctor. Every time one of them walked in I remember being so weak I was barely able to sit up. She told me I had a rare autoimmune disorder called dermatomyositis. This is when your immune system attacks your skin and your muscles. I cried yet again when she told me the treatment would be two years with prednisone but that she had had very good results. She said I was strong and would begin to feel better within two weeks. I feared the long term risks related to prednisone. She was so confident and understanding I knew I had to try but deep inside I was scared to death. I walked out with a diagnosis and a prescription but it would only be the beginning of my healing.
“She begins as ancient bones and fleshes out her life from there” became my reality. My muscles were destroyed. My psyche was depleted. My soul was weakened but I had the chance to flesh out my life once again.