I remember the phone call as if it was yesterday. I was talking to the head of HR from my company who was reviewing my medical records and he was informing me of a decision he had come to regarding my disability from Graves’ Disease.
“Amalie, I’ve spoken to your endocrinologist and we just don’t believe you will ever be able to return to work. We’d like to put you on permanent disability, effective immediately.”
I was twenty-seven.
I was stunned. I knew I was sick. But I also always believed that I would get better, that my illness was transitory. Being sick, forever, could that really be my reality? I felt sick inside, and tired, so very tired, at the same time. I told him I would talk to my doctor and get back to him later that week.
A part of me was tired of fighting. It seemed like it would take a miracle to regain my past vigor and my appearance, and my internal resources were dwindling. The HR Director’s verdict seemed to be the final summation of my situation.
But another part of me protested, angrily: At myself, for giving up so easily, and at him, for writing me off. I made an appointment to see my psychiatrist, Alexanndra, and told her what happened. She had spoken to him, too, as part of the case review.
She looked at me intently and asked, “What do you want, Amalie? Do you accept this?”
And I whispered, hoarsely, “Hell, no.”
That was my first step in taking my life back.
My doctors convinced the HR people to keep me on regular disability. And while it was some time before I returned to work, (I was to have relapses and subsequent disabilities after that), eventually I was able to come back to work full-time.
After a lengthy period of time on medication to rein in my thyroid, I did have the radioactive iodine, which took almost six months to take effect. You basically drink a radioactive iodine concoction that “kills” your thyroid, or most of it. I began to have second thoughts when they brought me into a sterile, secure room and a woman in a space suit administered the dose. “Am I going to glow after I drink this?” She just smiled through her mask. For two weeks, I had to flush the toilet repeatedly after I peed and keep my distance from other people and pets because I emitted radiation (“rays”) that could effectively kill or affect their healthy thyroids.
It was a significant turning point in the early part of my recovery and signaled that I would, indeed, regain some aspect of wellness. I needed to add patience to my arsenal in fighting for my health, in addition to being tenacious and positive.
Another good sign was that the inflammation in my eyes subsided over a number of years and they no longer protruded. The double vision also went away. I no longer looked like a glaring, bug-eyed, cartoon character.
What little bit of my thyroid remains is temperamental and I need to get blood work regularly to make sure I am on the appropriate amount of Synthroid (synthetic thyroid replacement hormone). I also have a chemical imbalance caused by the thyroid storm that renders me prone to depression and panic attacks; these and the Graves’ are kept under control with a cocktail of pills that I will take for the rest of my life. They keep me, for the most part, symptom-free.
As I write this, I am overwhelmed. I realize that a part of me hadn’t finished grieving for the woman I once was before the illness. I had been gleefully unaware of how ephemeral life was, how fragile health was, and how frightening a medical test result could be.
But the woman I am now, ah, the woman I am now is ALIVE. In every sense of the word.
All in all, my journey back to health took almost twenty years. Now, I am blooming with health, fit, and working out regularly.
I don’t know how you can have an experience like this without it completely changing your perspective. I have sincere, authentic relationships, not the huge circle of what were essentially only acquaintances in my life. I am acutely aware of not frittering away borrowed time, of making each moment count.
I relish solitary, contemplative time. And writing is once again bringing joy into my life, a much-needed creative outlet.
I feel like I can breathe again. And reassess my surroundings. How do I want to live the rest of my life? What do I want to do? Who do I want in it? And how do I go about making those things happen? The answers are enticing and the future seems magical and bright to me. I deserve the fairy tale. I have so much to give and share.
So I’ve come out the other end of this rocky, scary journey and turned out to be more than ok. I’m grateful for the family and friends who held onto me throughout the ordeal, and thank god for their fortitude and love. I love you all back.
To those of you managing through your own autoimmune adventure, godspeed and good luck. Let me know how you are doing. I hope my story inspires you and brings you hope. Recovery was long in coming and awesome in its reality.
Finally, thank you to those of you following my story and lending your support. You inspire and motivate my writing. As always, I welcome and appreciate your comments.
It started with a barely discernible tremor in my right hand. I was reaching for my coffee cup and noticed my hand shaking. “Nerves,” I thought, “I have way too much stress in my life.”
I was 25 years old and had the world as my oyster. I had come off of a successful four year reign as a popular, vivacious university student, involved in campus activities, even pulling off a decent 3.4 grade point average despite having to pay my way through college by waitressing 15-20 hours a week and pulling a full-time class load. To top it off, I had interviewed with and received a job offer from a Fortune 500 company, a coveted opportunity straight out of college. The future was bright and promising and I embarked on early adulthood brimming with excitement.
It was two years into my career when the symptoms started. I had never really been sick; I was fit and active, only catching the occasional cold. Back then, I didn’t even have a primary care physician and hadn’t had a check-up since my initial physical for my assessment when I started my job. I had moved to a new city with my budding career and it hadn’t occurred to me that I might need a doctor some day. I was young and infallible.
I was managing a three state sales territory and traveling close to 80,000 miles a year by company car. My weekends were also frenetic; nights out with friends, running errands and catching up with work during the day, cramming in grueling workouts and runs. It was a hectic lifestyle and it was easy to shrug off a few odd symptoms as part of stress or lack of sleep.
A few months later, the tremor moved to my right foot. I noticed my foot trembling on the gas pedal as I was driving to a sales meeting out of town. The next day, I had to give a presentation to our entire district. As I confidently strode to the front of the room, a strange thing happened. Perspiration started pouring down my face and the back of my blouse beneath my blazer became damp. I felt my face get hot and flushed and I stumbled. I recovered and continued to the front of the room but it was the most uncomfortable and excruciating presentation I’ve ever given. I thought I was going to pass out, I was burning up, my hands were shaking and I was starting to have double-vision. It was with relief when I wrapped things up and handed the mic over to the next presenter. I mustered up as much poise as possible and walked sedately to the back of the room. My manager followed me to the ladies room.
She took one look at my face and almost called 911. We both thought I was having a heart attack. I was terrified and embarrassed. I don’t suffer weakness in myself very well and hate to be the center of attention when I am feeling vulnerable. I begged her not to call for help and she helped me to my hotel room where we applied cold compresses to my forehead and wrists. To my horror, I noticed that my ankles and eyes were swelling and becoming puffy. I was experiencing severe edema.
I told her I was fine and said I would call her if I needed anything. I just wanted her to leave me alone. I finally got her to leave, reluctantly. I drew an ice-cold bath and soaked for what seemed like hours. I couldn’t seem to cool down and the swelling was so uncomfortable.
I should add that as a child I had a hyper-neurotic fear of doctors and hospitals. I dreaded shots and physicals so the thought of calling medical personnel at that moment was as horrifying as the physical symptoms I was experiencing. Instead, I soaked in the tub and refused to deal with what was happening, telling myself it was just some weird allergic reaction and it would all go away.
And go away it did. The swelling subsided, the tremors went away and I stopped feeling flushed…for about a month. Then it all came back with a vengeance.
This time I knew I couldn’t ignore it and went to the emergency room. When they told me it was an allergic reaction, I felt immense relief, “see, I knew it!” I told myself. They told me to take Benedryl and a few days off to rest and I’d be fine.
Life Lesson #1: Do not rely on the Emergency Room for your diagnosis when something bizarre is happening to you.
I messed around with multiple emergency room visits for almost a year before I finally made an appointment with a Primary Care Physician. At that point, I was having non-stop tremors, hot flashes and profuse sweating and I had put on over 65 pounds. I was also starting to lose my hair. My District Manager called me into his office and kindly but firmly insisted that I take time off and make a doctor’s appointment as he was concerned about my health.
I’ll never forget that meeting with that doctor. I was sitting in my gown, trembling uncontrollably, when the doctor walked into the examination room. She took one look at me, took in my swollen ankles, shaking hands, and damp, flushed face and said, “Amalie, I think you have been misdiagnosed in the past year. I believe you have thyroid disease. And we are going to make you better.”
I broke down and sobbed. Then something terrifying happened. The tremors started turning into jerks and I started convulsing. I had gone into a full-blown thyroid storm.
The next few hours are a blur. I woke up in a critical bed at the local hospital. I had heart and kidney complications and found out later that normal thyroid readings are between 4-7 and mine were around 38. They had me on beta blockers, steroids, and several other medications—I was popping pills every 2-3 hours. I was in a private critical room where they had to keep the temperature at 55 degrees because I was so overheated from my overactive thyroid that I was hypersensitive to heat.
I was diagnosed with a rare form of Graves’ Disease where a small percentage of people, primarily women, gain weight uncontrollably, even though it is hyperthyroidism. The diagnosis was only the beginning, and this story will take some time, and several posts, to unfold. This is not easy writing. The road to recovery was steep, rocky and frightening, and full of many potholes. God, I was so bloody scared back then. But I have the distance and the perspective to write about this now. And feel the relief to know it is over.