I used to believe that my life was always going to be like a field full of sunflowers and butterflies enjoying the heat of summer. The cold would never penetrate my body’s defenses or cause any external damage. The sun would always shine and wash away the sadness and anxiety. My Body would be as free as a butterfly, carelessly moving about every which way and only stopping to refuel my body to start again.
Yet, the reality was harsher than some may speculate. I wasn’t aware of my body’s defenses deteriorating. My mind swam elsewhere, away from the shore as I learned the hard way of what ‘family’ meant. Not every family is determined to destroy another person’s life and well-being. My extended family didn’t just hurt me physically, they hurt me emotionally. My young mind suffered through years of wondering why things happened the way they did.
The psychological damage still runs rampant at times and causes a bolt load of issues in my daily life. Depression isn’t just sadness; depression sucks personalities into a black vault and locks the vault throwing away the key. My mood changes and relationships shift as daily life becomes dull and uneventful. Even after depression lessens its hold, the person ultimately suffers from the repercussions of decisions made while ‘stuck’ in the nothingness.
Anxiety comes and goes. How do I describe anxiety? It feels like I have no control of my body. This includes what I talk about, when I sleep (if I sleep), and what I eat (if I eat). The attacks come at random and sharpened a part of the brain that increased panic. Sometimes I can overcome an attack but many times my brain and body consent. The fight or flight senses go into overdrive. Once my body takes control my mind goes on a rampage.
The strongest of people are the ones who can speak about their struggles and fight the urges to not return to the catatonic state. My mind is a powerful tool that can easily manipulate reality and pave a path far away from the brightness of fellowship and friendship.
I thought after my misguided adventure to adulthood my body would be gracious. My mind had started to clear the fog that started as I entered my teenage years. I could think straight and have a conversation with someone without becoming fearful of punishment. It took a while but after some counseling, I learned how to integrate myself back into society.
As I became an adult I learned quickly that my body was fighting something. The emotional stress I experienced as a young teenager concealed my Physical Pain. As I readjusted, my physical pain exploded into spectacles of intense bouts of cringe and scream-worthy disorders.
It started out with my inability to eat and then keep food down. Depression and anxiety came back with the power of a bull charging at an offensive red cape. My once thought cured headaches returned and messed with my ability to focus. I was already struggling with my weight and later my physical pain turned into something life-threatening.
I went to the hospital and stayed there for four days as doctors and a nutritionist worked to help me gain weight. I gained back most of my lost weight and was released to figure out the world.
The physical pain didn’t end. I was finally brought to specialists and tested on relentlessly. At seventeen I was finally told the truth behind my physical pain. I had Scleroderma.
I was originally diagnosed with the less-temperamental type of Scleroderma called Morphea, a type of Localized Scleroderma. My hair was falling out. I had no signs of thickening on my hands or fingers. I was lucky as my doctors made me well aware of the risks the disease holds.
I lived my life normally and my health was improving. The medication I took helped with the symptoms. The once-fuzzy thoughts were replaced by clear and concise pictures of tasks and what my future held.
I went through a few unintended setbacks with unrelated medical problems for some time. It wasn’t till I turned 21 that I knew something was very wrong. I was heading down for the third emergency visit to the Children’s Hospital in Milwaukee as my feet remained stubbornly purple and intensely painful. My Raynaud’s phenomenon had sparked new flames as I turned eighteen and brought new complications. Every year I would lose control of the ability to keep my body warm and in result be rushed to the emergency room with hopes that I wasn’t too late.
I learned many things on my last visit to the Children’s Hospital. One, the ulcers on my toes are occurring in the same spots every year. Two, my feet are becoming shiny and harder to move. Three, the Scleroderma had spread and now was attaching my hands and possibly my internal organs.
Since February 2016, I’ve experienced more pain than I had ever experienced while starving and going through court. The emotional and physical pain I felt as my hands slowly started calcifying and curling into themselves is something I have little talent of explaining.
It’s almost the end of the year and I find myself looking back to when I was told I had Systemic Scleroderma in February. I know have a disease that is slowly deteriorating my body’s defenses and taking away my mobility. Scleroderma is a progressive disease. I have had Scleroderma for almost five years and I sometimes wonder what I could’ve changed.
I’m living with CREST.
C is for Calcinosis where calcium deposits in the skin all around the body.
R is for Raynaud’s phenomenon, a disease where the blood vessels spasm in response to cold or stress.
E is for Esophageal dysfunction, sometimes can be acid reflux or a decrease in motility of esophagus.
S is for Sclerodactyly, the thickening, and tightening of the skin on the fingers and hand.
T is for Telangiectasia where the capillaries dilate and cause red marks on the surface of the skin.
Like the time when I dreamed that anything was possible I learned the horrid truth of CREST. Since April 2016, I’ve been fighting Sclerodactyly. My right hand is stiffening and curling on itself. The wounded feeling has returned to my heart as I slowly watch my hands become harder to use and painful to move. I know the future for my hands and I cry inside every time I breathe through the pain.
I’ve learned that Scleroderma has a mind of its own. Like depression and anxiety, Scleroderma takes control and destroys.
As I go along and learn to adjust to changes in and on my body I find myself caring less about the outcome and more about the possibility. The Scleroderma Research Foundation works to find a cure and spread the word about the nearly anonymous disease. With help from viewers like you, Scleroderma can disappear.
| The continued cracking of the skin. |
Testing has already started. Some research has found that some patients with Scleroderma have elevated levels of protein in their blood. Women are more likely to get Scleroderma and families with histories of rheumatoid diseases are at an increased risk. Finding connections will ultimately help researchers find clues to finding a cure.
I have Systemic Scleroderma and I’m fighting. The emotional strain is a struggle, but I know that tomorrow is another day where I can try again.
I won’t let Scleroderma control me. I’m a survivor and will be an advocate for the continuing research for Scleroderma till I go on my final adventure and meet my maker.
