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!