Flying High: The diagnosis

 The Diagnosis

30,000 feet in the air. I am barely conscious but the anxious feeling took over any other fear and emotion I may have had. I packed and slept and slept for the two hours to the airport. My mind was numb and my body just went with the motions. I fought hard to keep it together. My purpose of this trip was to say good bye to my gorgeous daughters and do a will leaving then to my mother. The air grew thin and I dosed off into a deep sleep the rest of the flight, how am I ever to say good bye to my most precious creations. How can I teach them a lifetime of lessons in such a short time? I was heading home with a broken heart. Will that be the last time I hold them and see their smiling faces?

Saying good bye is never easy. How do you prepare to say good bye to the ones you love the most? I almost did it and I still don’t know the answer. My girls had gone to live with my mother in Chicago. I had gotten to the point in my illness that left me unable to take care of them or myself. I knew I was dying, I was not confident the doctors would discover why in time. Years of feeling miserable led to a quick decline in my health. Within months I was bed ridden and had lost 40lbs. One doctor insisted it was all in my head, that I was too young to be this sick. Another doctor fought and fought. She finally figured it out. I had gone to Chicago to say good bye to my daughters and parents but instead I received a call from my doctor that had changed my life by saving it.

My phone rings as I sit on the couch in the living room of my mother’s house; my girls cuddled under my arms. I hesitated answering it, not to lose that precious moment. It said Prescott, AZ on the screen and I thought perhaps it was my doctor so I reluctantly answered. It was and what she said next is why I am still here. I said hello and immediately I hear her panicked voice on the other end. “Eva, you’re still alive, thank god!” she exclaimed. Not exactly what you expect to hear your doctor say. I got off the couch and walked to a quieter room. I listened to her talk about my AM cortisol draw and how it was zero. She said she sat at her desk going over the test, a dozen times and the number still hadn’t changed. She consulted another doctor and they both agreed that I should not be walking around, none-the-less getting on a plane and flying to Chicago. My mind was spinning; I could barely process what she was saying. Adrenal glands, cortisol, dying…..what? I was so terribly confused. “I don’t know how you got on that plane and made it to Chicago alive Eva,” my doctor frantically said,” but you need to have someone take you to the ER right now, don’t wait another second, you don’t have many of those left.”

I dropped to my knees and tears started to stream down my cheeks. Finally an answer! I was shocked, elated, relieved, scared and many other feelings all rolled into one giant emotional ball of distress. My mom asked what was wrong and I explained some of what my doctor had said between the sobs and just deep brain fog. I called my best friend Brett and told him to come to my mother’s house and that I would tell him more on the way to the ER. It was Saturday night and I was dreading going in. I just knew it would be packed and I would be sitting and waiting for hours if not all night. When he arrived at the house we prepared a bag with books, extra clothes and snacks. I hugged my girls tightly and told them I would be back soon and that the doctors were going to make me better. Out the door I went.

I decided to go to the University of Illinois at Chicago. It’s a good teaching hospital in the inner city. As we drove I told Brett what the doctor told me. It was all starting to make sense now. I immediately started looking up adrenal insufficiency and Addison’s disease and reading about what the symptoms were and treatment options. I did not want to set foot into an ER without first knowing what I was dealing with. I’ve had too many doctors almost kill me. I was wary of all doctors and the medical system as a whole. The system that let me get to the point of almost dying and called me crazy didn’t leave me with much trust or confidence, I was anxious to walk through those ER doors. I am still not confident in our medical system, but since then I have found a few doctors that amaze me. There are a few good ones out there.

I walked into the ER, it was crowded and loud. My anxiety levels shot up. I wanted to turn around and go home. I wanted to be home with my girls, not wasting time here. My anxiety as a whole has been a huge problem, in some ways I thought I was going crazy, what else could explain the debilitating brain fog, insane anxiety and panic attacks? I was soon to find out that having adrenal glands that do not work at all can cause all this and more. I wonder how many psychiatric patients are misdiagnosed each year with depression, bipolar, anxiety and anorexia because doctors do not think to do a simple blood draw. The man at the front desk of the ER wore a dark blue security shirt and a face that depicted pure and utter boredom. He instructed me in a mono toned voiced that I should take a number, be seated and wait to be triaged. As soon as my butt hit the seat a nurse called my number. I walked over to the triage unit and told her my story, I told her what my doctor said and she took my vitals. I don’t remember my blood pressure but I know it was very low. She had a worried look on her face. They put me in a bed and hooked me up for an EKG. Before this was even complete an endocrinologist had been paged and was standing at my bedside.

He was smiling and asked for my story, I retold it, as much as I could. He laughed and said I have made this very easy on him, there was no figuring out, I came in with answers. I was transferred to the endocrine floor and the tests began. My AM cortisol was zero again and I miserably failed my STIM test. I had a crowd of endocrine students asking for my story and symptoms I felt like a broken record. Finally, the head of the whole department came in and her and my doctor who refused to leave until I was stable delivered the news. I was given an IV and 100mg of solucortef. I didn't remember the last time I felt so well. They shook their heads and told me it was a miracle that I was alive. I replied with I am the most stubborn person you will ever meet and I wasn't ready to die. They laughed and said there is no other explanation. Then I received the whole take these pills twice a day and give yourself time to recover. It’s almost a year and my life is nowhere near normal. It was still amazing. I had answers and new hope. I had a chance to live and watch my girls grow and be there for all the little and big moments in their life. They wanted to keep me in the hospital for a few days but I begged to leave. It was Mother’s Day and I was determined to celebrate this special day with my babies, the reasons I wake up each morning no matter the pain. A mother’s love is deep and unbreakable. Happy Mother’s Day, I was allowed to go home.

I was thankful to have a name and a treatment for what has spent destroying me heart, mind, body and soul. I had a chance to live again. At the time I didn't realize how difficult this journey would be. I’m still falling, but I keep getting up. A few days after treatment began I started feeling like my old self again. I traveled, climbed and adventured the rest of the summer. Yet, this will be where my story will continue. My adventures with Addison’s disease. First adventure was getting on a bus and taking my children to the zoo. I could walk and think again. I truly believed in my heart that life was finally getting better. Challenges have come up but I have many tales to tell. I am no longer dying; I am living, one day at a time. I must thank my dear friends and new family on a support site for people with adrenal insufficiency. The people at Living With Addison’s Disease taught me so much about this disease and have been a massive support. Sometimes we lose a piece of ourselves only to find greater pieces that that are amazing. I am a lucky girl. Mother’s day was spent quietly with my daughters, and I cherished every moment. Life is beautiful and I will never forget that.

Ps. All the pictures taken shortly after diagnosis. I am fighting daily to regain myself.

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!