Support for Those Living with Adrenal Insufficiency

Flying High: The diagnosis

The DiagnosisDSC_2157

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 503almost 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.

DSC_2266My 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.”

DSC_2665I 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.

1035He 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.

DSC_2386I 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.

Re-posted from the Blog “Life is Beautiful” 

Written by Eva Hernandez

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250,000 Americans are diagnosed with adrenal insufficiency. 6,000,000 more are considered to be adrenal insufficient yet remain undiagnosed.

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