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.
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.
I woke up to a day shrouded in clouds, the ground covered with newly fallen snow and a layer of pristine, sparkling ice, even freezing my back storm door shut. It was with relief that I remembered it was Saturday and turned up the heat and ignited the gas logs in the fireplace. Hot coffee in hand, I decided that a bit of plumbing the past was in order.
I ventured into my basement and set about pulling old files and folders. Soon, I had my past spread about me: years of journals and assorted notes and scribbles. As I began to read, the years fell away. Essays I had written in grade school and high school; diary entries from my teenage years; quickly scribbled notes from school chums; journals and notebooks from my years of chronic illness with Graves Disease and throughout my lengthy recovery.
I focused on the earlier stuff. The girlish scrawl, the earnest voice that spoke from those pages, the words from a young mind brimming with imagination and hopeful dreams for her future. I remember being that young girl, so at odds with her surroundings and the other kids. At times my environment felt jarring to me and I just wanted to escape.
There is a theme to my early writing, of feeling isolated, peculiar, lonely and different. If I had stayed on the sidelines, I probably wouldn’t have had as many problems with the other kids, but I was outspoken, fierce even, and participated passionately in my favorite classes.
But I received my due when I would get on the bus, often sitting alone, while the other girls would whisper and snicker about me just loud enough for me to be able to overhear. I dressed funny, my hair looked stupid, I wasn’t “cool”. I couldn’t wait to get home after school. My mother’s cheery, “How was school?” was often received by my cool and deliberate “fine.” Yes, just fine. Peachy. I wanted to fling myself off the nearest cliff.
But I also remember thinking I was meant for better things, and I looked to the Future as if it was a true beacon of hope. Grade school and even high school weren’t going to go on forever and I pinned my hopes on blossoming at 16. To me, that was going to be my turning point, when I became beautiful and all the boys would want me and all the girls would clamor for my friendship.
At the core of it, I was simply a lonely young girl who wanted to connect with someone, who wanted to be understood, who wanted to be loved.
The summer after my junior year in high school, something happened. I trimmed off about 12 pounds with daily bike rides and had my hair coiffed in a buoyant Farrah-like ‘do. I returned to school that September head held high.
And. Nothing. Changed. Oh, yes, I received admiring looks and glances, and one of the “nice” popular boys asked me to a party. But the long-established cliques were impenetrable and when we attended, barely anyone would talk to me, such was the penalty for trespassing.
That was an epiphany for me, that year. I knew I would never let another person make me feel less than who I was at any given time. Fuck them, fuck them all.
Something splashes on my hands and the keyboard and I realize that I am crying. Even now, the pain can reach out and touch me. Sometimes, I wonder why I am writing about this stuff, it seems so useless, like wallowing in the muck. But I’m aware of having a different perception, one of surviving the pain and moving on. In many ways, having a solitary childhood prepared me for adulthood and the challenges that I faced therein. I am resourceful and determined. And I know through experience, that things do get better, and that my tears are as much tears of compassion and release, as of pain.
A dear friend of mine suggested that perhaps this project will be cathartic. I like the analogy of peeling away the layers of an onion until you reach the core. Until you are naked and exposed. I’m feeling very vulnerable with my writing but also excited and passionate. It’s been a good journey so far.