Surviving the Storm

Me at a healthy weight before diagnosis.

              

           The clouds come rolling in; big, dark, and ominous.  My mind is in the middle of the storm, it blows in wreaking havoc on my body. The roaring winds rip apart my thoughts and push and pull until there is little left of the original structure. My world is collapsing and it hurts, every breath I take I exhale more pieces of my failing body. The storm has destroyed me. How can I begin to rebuild when I reach out for help and there is no response? My S.O.S. falls on deaf ears and eyes that cannot see. I will not give up. I must rebuild, I must find the one person who will listen to me and not turn a blind eye to the extent of the damage my body and mind has sustained.

My journey with Adrenal Insufficiency started years ago. I don’t know if I can pick out the exact day or time my body and mind started to fall apart and my world started spiraling out of control. I look back and there are so many memories lost in a deep and impenetrable fog.  My comfort is that I finally have an answer. It took years of me searching and doctors not listening.  So many years passed where I would be the person looking in on my life and wondering who that person was. It wasn't me anymore. This girl looked like me and at times thought like me, and yet she was not me. I strongly believe some of the first symptoms I experienced where psychiatric in nature. There were small things like my lack of motivation to very drastic changes in my personality and everything in between. I would call my best friend and cry, I would be drenched in tears and hysterically trying to seek some sort of comfort. He knew me so well, he knew the girl I was. The anxiety that would take my life over prevented me from doing what I once considered to be simple tasks. Among them was spending time with my three wonderful children.  I went from loving the time we would go in adventures together, to dreading when they would return from school. I had this overwhelming feeling to run away, run far far away. I needed time alone and stress would overtake me.

I weighed 135lbs in this photo at my sickest.

Before I started getting very sick at 170lbs.

                The time to run away had finally come. I decided it was time for a change, it needed to happen before I lost the last pieces of myself. Every day it seemed that more pieces would fall to the ground, I was unraveling. I had always dreamed of moving out west and it was time to follow my heart. As a child when anyone would ask what I wanted to do when I grew up I would confidently reply, a biologist. I wanted to work with amazing animals in amazing places. I had always been drawn to the large carnivores I would watch on PBS. Wild America, I wanted to be that piece of the wild, I wanted to live in it, save it and walk with the bears, wolves, and fly free with the eagles. I ran away to college. Prescott College to be exact. A school that allowed me to not only get me education, but go to those amazing places I had watched on TV as a child.

150 lbs

                Something was still terribly wrong. Before I had decided to go to college I had a hysterectomy, it was followed with a year of incurable infections. I was well enough for a few months to make it to Prescott and complete our backcountry orientation in the fall. By December I started having infections again. I took antibiotics and pushed through. My personality started to decline further and further. I was trying so hard to keep myself afloat, gasping for breaths of air as the anxiety and depression swallowed me whole. I met someone, fell in love, and could not deal with the stress of a relationship. I rallied and found the courage to go to Alaska with my school as a class. I had been overcome just a month prior with some of the worst migraines I had ever experienced. I was scared to go, scared to leave, and scared to spend the summer roughing it in the back country of one of the wildest places on earth. I did it anyway. Alaska was a dream, it was more than a dream, I refused to let my body destroy my childhood aspirations. In June of 2012 I departed on the journey of a lifetime, with five other students and two instructors. There were days out in the backcountry where I struggled to get out of my sleeping bag, I struggled to be agreeable, I struggled to keep the fatigue at bay and the anxiety under control. How could I be so miserable in such a wild and pristine place? I was so angry with myself, this wasn’t me. Where had I gone, and how could I get myself back?

                Fast forward a couple of months, I am back in Prescott, I am slightly out of control. I have a shoulder injury that I made so much worse rock climbing on for a month in my Rock and Geology course. I loved that course. It brought back some peace to my life. Then I came back into town and I lost it. I received my first cortisone injection in my shoulder. I felt like I had the worst flu ever after that shot. It took a week for me to start feeling somewhat better. I swore I would never do it again. I called my orthopedist and he said he had never heard of cortisone shots making anyone sick. It must have just been me coming down with something at the same time; he reassured me the shot was safe.  Eventually the pain in my shoulder lessened, I could climb again, and yet I stopped doing everything. I struggled through my classes, classes I had been so excited for. Animal biology should have been a sure A for me. I never got less than a B anyway. I left two courses that semester with C’s. The only reason I received those C’s was because I talked to my professors, I cried and told them I felt like my life was slipping away. I worked as hard as I could, but my ability to get through a short paper had vanished. I would go to the library with a good friend, open my laptop and cry. I would go into such an intense panic attack I would spend more time outside smoking and pacing than I ever did working. How can this be, I would ask myself, I would sit on the bench and just wonder if perhaps my time was running short. There was no other explanation.

                Four months later I received my second cortisone shot, I did not want it but the pain was unbearable. I was enrolled in a black and white photography course, the only course I was able to attend that semester. I needed to be able to use my shoulder. Then it happened again. I felt like I had the worst flu possible. I had night sweats and nausea and I came to a point that I could no longer drive myself anywhere. I would drive places and not know how I got there. I would sit in my car and wonder how I ended up where I was. It was terrifying. I went to see my primary care physician almost weekly. I would be in tears and beg him to help me.  My primary care physician said I needed anti-depressants and therapy.  He referred me to a psychiatrist and told me I was too young to be this sick. I called my orthopedist again to ask if the cortisone shot could have done this. He said there was no way the shot could have made me this sick. He was both right and wrong. My women’s health nurse practitioner was the only one who listened to me. She watched me waste away and loose over 40 lbs in just a few months. I was dying; we both knew it.  My nurse practitioner saved my life.

                Edie Morgan is the name of the wonderful woman who believed in me and she is the reason my children still have a mother. I cannot adequately express the gratitude I have for her. The terrible lower back pain and rapid weight loss made Edie secretly think that I had lymphoma. She ran a scan and discovered that my adrenal glands were calcified. This led to an AM and PM cortisol level blood draw. Both those numbers came up as ZERO! It is a miracle I am alive. The diagnosis officially happened in Chicago. That is a story for next time. The tale of the beginning of adventures in my new life; my life with Addison’s disease.

A couple months after diagnosis. The curves are back!

My Journey West Pt.1

             

Maddy and Syrenity in Indiana

White. The whole town is covered in a frigid, soft and white blanket. I walk over to my candy apple red mustang, with the sound of the snow crunching after every reluctant step. My deep purple fleece gloves wipe the tears from my rosy cheeks as I watch a few snowflakes make their journey to the ground. I have become restless and I am in desperate need of a change, it is more than the cold, it is my soul that is searching for its path in this world. A life lived merely longing for dreams is that of a ghost haunting the same halls, day after day, trapped in time.  A shiver runs through my body as I brush off the remnants of last night’s storm, revealing more of the bright red car hiding under this wintery blanket. I sigh and my breath forms a white puff that dissipates as it floats up to the heavens. The chill of the winter’s unforgiving winds only adds to the bitterness that has been growing stronger and taking over my heart—it is broken and lost.

                I return to my little house, after all the snow from my car was brushed away, to be greeted by the heated sounds of a sibling quarrel. My snowy gloves clean the last drops of evidence from my tear streaked cheeks. The depression that has corrupted my soul is kept safely inside the vault of my mind. The children shouldn’t have to deal with my downfalls, and I pretend to be happy for their sake, and my own. Smiling when all you want to do is cry is a theatrical mastery, and I have well mastered that act, as well as a few others.

                I close the door a little louder so the bickering would, with all hope, end with my presence. “Are you ready?” I ask. I just receive blank stares followed by hurried explanations of why there was arguing in the first place. Another sigh escapes me. Seemingly simple everyday moments overwhelm me and I struggle to keep my patience and my temper. It is time for the children to begin their long school day; it will soon be time for my dark and robust friend to join me. A little bit of an addiction, but hot coffee on an unforgiving cold Midwestern day is almost a necessity. Any comfort at this point is welcomed and needed. In a flash I see colorful hats and gloves being put on by little hands and I grab my jacket. 

“We are ready mom, but do we have to go to school today?” said my middle daughter.  “Of course,” I reply.  We head back into the cold world. The mustang groans as I pull it out of the driveway. I speed up a little and fishtail just a bit, enough to get a frantic scream from my middle child, a giggle from my preschooler, and a look of dismay from my eldest and only boy. “Lighten up guys!” I say with that rehearsed smile. My heart aches as I watch them, happy and unknowing of the pain I am fighting inside. Guilt rushes over me for the lies I tell with my faked happiness, even though it is for the sake of theirs.

Snow Angel

               Life has been challenging for me for a long time. I viewed my dreams as childish things, and now I regret that outlook. I am nearing thirty years of age; time is slipping out of my hands like the soft granules of beach sand. It took time and wisdom to realize that there is nothing foolish about chasing dreams. College and a career take time, if I do not act soon, all the sand will be gone. Too many people get trapped in the boxes that society has built and forget that their heart holds the key to happiness. We hurry through life and follow the paths we should according to others and dismiss the path that calls us. I believe that every person has a gift or talent and the ability to make the world a better place using what they are naturally gifted at.

              The southwest has been a dream of mine for many years. I have a long love of the desert all due to the many childhood summers which I spent exploring them in Mexico. The sun on my skin, the mountains covered in browns and reds with prickly pears in plentiful amounts. Sitting watching the sky and all of the golden colors that helped tuck the sleepy sun away in the evening, making way for a million twinkling diamonds and a bright Cheshire smile to send me to bed. The desert is a captivating place, which my heart calls home.

               I have spent many years now wishing to move to Arizona. I have never been there physically, and yet I feel my spirit drawn to that part of the country. I decide it is time to start following my own heart, let go of the insanity that has destroyed me, and listen to the calling that has been too long ignored.

I return home after taking the children to school and immediately start to make a cup of hot coffee. A sense of purpose has filled me; it is time to act now. The moment has come where I decided that I can no longer live the way that has brought me to this point of utter despair. It is a tragedy to see my life, my character, and my talents slip away. I walk over to my computer after adding cream and sugar to my steamy mug. The aroma of the freshly brewed drink fills the house. I walk over to my computer and sit down in the large black chair. I take a deep breath as the computer boots up, nervousness replaces the sorrow, it’s time to find happiness.

               I have always dreamed of going to college, as long as I can remember I have had a desire to earn my degree and have a career I am passionate about. As a child I vowed to work as a marine biologist and help keep the animals of this planet safe from the destruction that is caused by humans. As I grew that dream became bolder and more defined. Conservation biology fascinates me. How can I make this dream a reality? I am a single mother with three kids that have disabilities. I have worked very hard over the past six years to help turn their disabilities into strengths, and they are all doing so well. Is it possible that now is a good time to follow my heart and go to college? Show them, and myself, that it is never too late to accomplish a goal?

              I know that Northern Arizona University has a forestry program. I start my search there, then move to a general search of college in Arizona. I scroll and come across Prescott College. I have a very close friend, and the mother of my partner that owns a house in Chino Valley. I look up the distance between Chino Valley and Prescott Arizona and find that it is only 18 miles. My heart skips a beat, they will be moving there as soon as their house is sold. This means that I could still live close to friends and have some sort of support system in place to help me with my children. Some things are not mere coincidences—some things are simply meant to be.

Syrenity loves the snow!

              I click on the link that takes me to the Prescott College web site and begin to explore this amazing school. I quickly find that this school is perfect for me. It has strong programs in the field of environmental science; it is also an experiential school that is very self-directed. The programs and opportunities take my breath away. There are many filed courses, some are even international. The school starts all students with a three week backcountry wilderness expedition, I am amazed. I hit the apply now link, my heart skips a beat, I must try if nothing else, just see if I would even get accepted into the program. I will have the time between now and when I receive my letter from the school either accepting or denying my application to talk with my children, family and friends about this important change. I would have to move fifteen-hundred miles away from home, with three kids, and start a new life on my own. The anxiety of this rushes over me, then it is accompanied with excitement. It is thrilling to have even the thought of this grand opportunity. I have lived in Chicago my whole life. It is a vast city that swallows you, if you let it. I moved to Northern Indiana for a change, and to take my children out of that busy city. Two hours was far, yet not far enough to remove me from the turmoil of my past and the stagnant pool that has become my present. Still, if you have lived in a place your whole life, it is home. It is the place I know best and I have my parents there, as well as all of my closest and most supportive friends.

              The time for a decision has come, one sunny afternoon, about a month after my application was submitted to Prescott College, I receive an excited call. My entrance counselor Carmen happily informs me that I have been accepted and not only have I been accepted but I also received an eight-thousand dollar scholarship for each year to help pay my tuition! I feel my eyes fill with tears, the wet drops roll down my face. I wipe them speechless and overwhelmed. Tears of joy! I haven’t cried from happiness in so long, too long.  I am waiting impatiently here to give my children the amazing news; they have been just as excited as I am about the next step in our journey. I was worried for a long time about how this would affect them. I worried foolishly because they urged me to follow my dreams. I can’t wait to tell them!