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.