My nephew, Jake, was questioning my sister on what it meant to be a godparent. She explained that a godparent was someone who watched out for you, who loved you, and made sure you went to church and prayed regularly. If something happened to your parents, they might even take care of you and help raise you.
Jake’s twin brother, David, eyed him and said, “You’re lucky, Jake. You have Aunt Amalie as your Godmother. She’ll always take care of you!”
Jake replied, “Don’t worry, David, Aunt Amalie will always take care of you, too!”
David said, “Oh, I know she will!”
A child knows when he or she has unconditional love. My precious nephews are all of 12 years of age and already have a pretty good bead on things.
It was a simple conversation that my sister had with her two boys but it made my eyes brim with tears and my heart swell with emotion. Just one of those unexpected, “hey, let me tell you what the boys said about you,” little stories that just made my day and reminded me again of how much love I have in my life. Lovely and sweet.
I woke up and spent a few moments savoring how deliciously cool I felt. For months, my body temperature soared and perspiration soaked my skin and clothes. My embarrassment only exacerbated the situation and the ensuing anxiety and stress made me even more sensitive to the heat.
I opened my eyes and suddenly remembered what had happened. I was in a critical bed IN A HOSPITAL. I felt the sick fingers of panic snake through my body, grasp and clench hard my roiling stomach. This was my worst nightmare. My unreasonable fear of anything medical, anything having to do with doctors or hospitals, was taking a hold of me in uncontrollable waves.
I have no idea what the genesis was for this neurotic fear. I remember as a child sobbing when I had to visit the doctor or get shots. When I was a teenager, my father was in the hospital for gall bladder surgery. I was able to muster enough courage to go to the hospital the last night he was there. I actually started having panic attacks as I walked into the hospital. Emotionally, it was like being sucked into a whirlpool with no life jacket.
In many ways, having to deal with medical personnel and the medical environment was as traumatic to me back then as being diagnosed with a serious illness. The week I was in the critical bed I think I aged 10 years. It was unreal for me. But sans life jacket, I learned how to swim, and now, I am completely comfortable with doctors, hospitals and any procedure. You could even say I’m fascinated. It’s a relief to be over that debilitating fear.
They ran a battery of tests that week—CAT Scans, blood work, stress tests, echocardiogram, X-rays, I can’t remember all of it. My thyroid was so jacked up I didn’t sleep for almost two weeks and they had me taking Valium and Restoril to try to get some rest. The lack of sleep made me emotional and sensitive and I found it hard to follow conversations and instructions. My parents were rushing in from out of town and I was completely overwhelmed. I was told I almost died. I was too fractured, both physically and mentally, to take it all in.
The doctors wanted to do either surgery to remove my thyroid or radioactive iodine. However, because my thyroid was so hyperactive, they were afraid I was not strong enough for either procedure. So they were going to try medication first.
I finally left the hospital with my parents, a sheaf of prescriptions, and embarked upon what would be a lengthy disability from my job.
I had changed overnight from a svelte, fit, vivacious young woman into a morbidly obese, trembling, perspiring, balding, seriously ill person who scarcely recognized herself in the mirror. I was devastated. The steroids I was taking distorted my features, making my face puffy and hard, almost cartoonish. A goiter, the size of a small orange, grew out of my neck. I felt like a freak. Nothing in my life had prepared me for this. It was strictly one day and a handful of pills at a time.
For a long time, friends reached out to me and tried to be supportive. But I was bereft. I didn’t know what to say and fell uncommunicative. There was a disconnect when I tried to explain the seriousness of my illness to them; they couldn’t comprehend that I could actually be that sick and I tired of trying to explain that it wasn’t simply a cold. No one understood what an autoimmune disease was. They missed the fun, outgoing Amalie; the ill, taciturn, depressed Amalie was hard to take, and the phone started to ring less and less over the ensuing months.
Those early, awful days, months, and years were rough. My circle distilled down to an elixir of friends and family who supported me through the darkest and most terrible of days.
And I held onto them for dear life, even as I struggled to sustain my own.
The lengthy, devastating illness took a toll on my body over the long months. My nails became brittle and broke down to the quick. My hair became thin and scraggly, large hanks of it falling out when I showered. I remember the first time it happened, falling on my hands and knees in the shower as handfuls of hair came out while I washed it. My lovely, thick, long hair was thin and dull and I adopted an old man’s balding comb-over to hide my bare patches. The Graves’ Disease also had affected my eyes, inflaming the eye sockets, causing them to protrude and bulge, giving me double-vision. This, combined with the steroids I was taking and the significant weight gain, drastically altered my appearance. Family and friends were shocked when they saw me and found it hard to hide their reactions. I retreated even further into the sanctity of my apartment, refusing to see people, even to talk on the phone.
My parents begged me to move home so they could care for me but I resisted. My next door neighbor was in the medical profession and she shepherded me to specialists’ appointments and tests. Other than those outings, I rarely left my home. I wanted to be alone. A large part of me also fought against what I perceived as a weakness. I saw it as a solitary battle and my home became my bunker. I’ve always been challenged by the idea of reaching out for help, for support, and the struggle to regain my health and well-being was my primary focus. I tried hard not to panic as everything I knew and recognized about myself changed seemingly overnight. I turned inward to shore up my defenses.
My endocrinologist suggested that I see a psychiatrist who specialized in working with people who had chronic and terminal illnesses. I just nodded my head, “yes.” I was fighting for my life and I needed reinforcements.
One look at Alexanndra’s kind face and I knew it was going to be ok. My stoic demeanor crumbled and I just cried. I had nothing to say, my tears said it all. I believe she helped me save my sanity and remember the strong woman I was inside.
Together, we slowly and determinedly picked up the pieces of my damaged psyche and assessed my poor, sick body. It would be a long journey. But hope is a powerful motivator and I cradled it, close.
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.