A complete list of posts detailing my journey through misdiagnosis, diagnosis, and subsequent recovery of Lyme Disease…
Goodbye Alice and Wonderland
(September 5, 2011)
I’ve been in and out of doctors’ offices and the emergency room the past two weeks, trying to figure out the fevers, what has me feeling so nauseous and in so much pain. It’s like a repeat of two years ago — doctor after doctor ordering test after test, prescribing medications that make little sense, that serve only as a mask for the pain as they pretend I’m all fixed up and send me on my way.
Building Up Hope
(October 4, 2011)
She brushed the hair away from my face and kissed my forehead, adjusting the blanket around my shoulders, telling me to close my eyes and just rest, just until the doctor came back in.
Like A Prayer
(October 17, 2011)
I’m scared. Not for the surgery itself — I know I’m in safe hands. No, what I’m scared of is this guessing game, because I don’t think any of us are entirely convinced. What I’m scared of is this wondering, this desperation to feel any semblance of relief, anything that is at least reminiscent of what my life was before this, before I’d found myself withdrawing because I can do little else.
What I’m afraid of — what I’ve always been afraid of — is this unknown.
I’m Bringing Sexy Back. Clearly.
(November 3, 2011)
On Friday, the day after the operation, my mom asked me how I was feeling. I kind of paused and evaluated myself — then, for the first time in two and a half months, I genuinely smiled. I felt great. The only pain I was feeling was from the surgery; the pain and the fog that had persisted, that had drained me of any semblance of myself, was gone.
From Dust To Diamond
(November 7, 2011)
He’s been my saving grace in ways I’ve scarcely alluded to, for reasons I don’t think I’ll ever be brave enough to put into words. I may have saved him when I adopted him from the shelter, but he saves me every day. Every single day…on days when I’m aware of just how lost I feel and days when, for awhile, I have the relief of forgetting.
Pleased To Meet You, Hope You Guess My Name
(March 18, 2012)
I tried to ignore the whispers of the symptoms and concentrate instead on how great I’d been feeling. But eventually, my body decided it didn’t like being ignored, and while I could have shrugged away the old, familiar signs, it was the new ones that scared the hell out of us. Another round of ER, doctor visits, and tests. Only this time, we’re not looking to treat just the symptoms. This time, we’re narrowing down the cause.
(March 26, 2012)
It scares me that I can’t get up in the mornings, and when I do, it takes all of my energy to get dressed and go downstairs. And then, when I’ve made it that far, I try to push myself for what, rationally, I should be able to do, for what any healthy person should be able to do. And I think, I can let Riley out and make breakfast and pack lunch. I think, I can drive myself to work and answer the phones and work on my projects.
I think, I can do this.
But then I can’t. Sometimes, it seems to take everything I have just to get out of bed.
Are You There God?
(April 3, 2012)
I don’t know how to begin. My mind sifts through all the prayers I learned in Sunday school, but nothing seems right. Every Our Father feels too scripted and all the Hail Mary’s feel too impersonal, and I wonder how you’ll hear me if I can’t say the words.
Ticked Off (Part I)
(May 6, 2012)
Maybe it happened when we were still kids, as we played in the woods behind my neighborhood, building a fort out of downed sticks and searching for newly-sprung daffodils.
Maybe it was the sixth grade camping trip that plastered mud to our jeans and trapped brambles on our sweaters as we followed the trail to the watering hole in the forest.
Maybe it was just as simple as playing in the park, on the playground, in my own backyard…
Ticked Off (Part II)
(May 9, 2012)
Time seems to slow down and a fog layers my mind — so thick that I can’t recognize the work in front of me. Confusion settles in and nothing feels real — not the co-workers and friends who surround me, not the computer blinking in front of me, not even myself. I’ve been clocked at typing 90 plus words a minute, but I can barely press down on the keys. And when I lift my hand to sign a document, all I can manage is an illegible scrawl. I try to speak, but I stutter, unable to form the words, though my mind knows them, though internally I’m shouting at myself to wake up, Susan! For God’s sake, just speak! Shout, scream, cry!
This is my waking nightmare, I realize, and I wonder if it will ever end…
Under This Skin
(May 14, 2012)
Lyme — a disease so needlessly dangerous as it becomes an epidemic– can destroy the body and the mind, leaving its patients crippled by a disease and a system that refuses to save them.
It’s enough to really tick you off.
When The Devil’s On Your Back
(July 15, 2012)
It’s beginning to feel like the world is there, just around the corner, waiting for me.
I’m beginning to feel alive again. While I once feared I had become but a shell of someone who used to be, so severe had the pain and fatigue and fog become, I’m beginning to find the human underneath the symptoms again, the person and not the patient.
I’m beginning to understand the lessons this disease has been so gruelingly teaching me…
(August 26, 2012)
I think, There’s nothing I want more than to feel alive again.
But relapses will happen, as I noticed these past two weeks. Herxes – that ugly reaction when the germs are dying off and releasing toxins that intensify your symptoms — are cyclical and unavoidable. And no matter how much I may will myself better, no matter how many prayers I whisper or scream, I’m not in control. Not really, anyway, not like I want to be.
29 and Alive
(September 23, 2012)
Today is my 29th birthday.
The Sun Will Rise
(October 24, 2012)
I visited my doctor last week for my six-month check up. Six months. I can hardly believe that so much time has passed already. Sometimes, it’s hard to remember what it was like a few months ago, in those hours of pain and fog, when time seemed suspended, like I was living in limbo with a past and an unstable present but certainly no future to which to cling.
I can see my future now — there’s a dream reborn.
Dream Until Your Dreams Come True
(November 5, 2012)
When you hold onto and begin to pursue a dream, it means you have a future in mind. And when you’re battling for your life, fighting a disease that seems to strip you of that future, you find whatever you can in order to hold onto that promise of something better, of another tomorrow, so that it remains real, so that it stays possible.
What If I Fail?
(December 3, 2012)
Every waking moment becomes a fight for survival, when just living becomes exhausting. Every decision and choice, every attempt to focus every thought so that you don’t fall back into the darkness in which you’re so susceptible, and every action that could have its consequence becomes a battle that you have to win. For most people, surviving is about the external; for those with a chronic illness, it becomes a war among your very self.
Carry Me Home
(December 11, 2012)
Because who are you without this illness? It heightens everything, its symptoms ranging from physical to neuropsychiatric, and it all seems to be a part of you now. It’s been a part of you for most of your life, only you didn’t know it, so where does the illness — these symptoms that affect your very personality — end and where do you begin?
The way you look at the world, the way you interact with it — is it all due to this disease enhancing a penchant for reflection and solitude, manifesting itself in a withdrawal from the world? Does how deeply you feel, the senses and empathic nature and vicariousness that comes so easily come at all because of heightened sensitivity?
Up Close and Personal
(December 17, 2012)
We need to remember that mental illness isn’t a choice, we need to remember that even those with diseases are flesh and blood and emotional, human beings. We need to understand that, just as mental diseases are so complex, so, too, is the diagnosis and treatment of each individual. It’s not reliant upon one single person — it can’t be — but rather, it takes a community.
A Brave New World
(January 1, 2013)
But today, on this first day of a new year, I vow to start loving myself instead of hating myself. Today, I stop blaming myself for something that has always been out of my hands; I vow to take control back from this illness that has left me helpless. Today, every wish becomes the beginning of something positive.
Today becomes the start of my brave new world.
I Have Seen The Rain
(April 17, 2013)
These past few months, I’ve felt lighter and stronger than maybe I’ve ever been. The old me laced with something new — an understanding of myself, a self-assuring and life-affirming spirit, a confidence and pride that I’ve grown into and accepted as something beautiful. And as much as I thought I knew about the world, I’ve learned so much more and have realized I’ve barely even scratched the surface.
Even this, at only twenty-nine years old, is just the beginning.