Chapter 1: You Always Have a Choice
Middle Aged Lady Shit is not my first rodeo. 10+ years ago, I wrote a blog for nonprofit lupus organization. I shared my experience with being sick. People resonated with it. It even won some awards.
A few years ago, I made the conscious decision to stop talking about being ill. Why? Because I didn’t want to give this part of my life any more energy or attention. I wasn’t cured (there’s no cure for autoimmune disease). But the healing I had experienced by turning inward changed the game. A complete 180.
Lately, I’ve been feeling the call to revisit this decision. After more than a decade of being on this journey, I’ve learned a thing or two about life with an incurable illness. I know how to live with pain. I know how to release this pain.
It’s time to once again share.
I’m currently editing and compiling everything I’ve learned on this journey into a book. I plan to self-publish. But to have any hope of reaching the people it needs to reach, I need your help. If you know anyone who is experiencing a life-changing injury or illness, please send them this post. Because I can honestly say, even if there is no cure, it can be SO MUCH BETTER.
My “method”—if you can call it that—isn’t out of reach. Even if you’re stuck in bed, unable to walk because you feel so much pain. Or your brain fog is so severe you have trouble tracking—I’ve kept that in mind, as well.
It’s simple. Which is not to say it won’t be hard. It’s been, well, it’s been wild. It’s at times been excruciating. But even in its darkest moments, it’s been far better than living as a victim of chronic pain and fatigue. I feel better. You can, too.
The book’s working title is this: Being Well for Sick Girls: The Lazy Girl’s Guide to Healing from Chronic Pain and Fatigue.
Here’s a glimpse at the first chapter. If you know someone who is on a similar journey, please share.
Chapter 1: Diagnosed.
The day my rheumatologist handed me a Post It note with the words “systemic lupus erythematosus” scrawled on it, my life forever changed.
And not for the better.
At least, at first.
If you’ve downloaded this book, I imagine you can relate. Or, not relate, seeing as many who seek help for chronic pain and fatigue never receive a medical diagnosis. Many of us have “normal” lab values. Many of us aren’t believed. Many of us are labeled “hysterical” or given the all-encompassing answer of “it’s just your hormones.”
Alas, I’m hopping off this soapbox. Because this, while important, is not what this book is about. I’m here, today, more than a decade after diagnosis to tell you this truth:
You can feel better.
In your body.
All it takes is a single choice.
But we’ll get to that part, later.
First. I’d like to share with you my story.
It was August 2011. I had just returned from a weekend at the beach with my best girlfriends. We spent three days lounging like lizards with drinks in hand, carrying on as if we were 21 again.
I returned a hot mess. After a week of what I believed was worst hangover ever, I turned to my primary care doctor. After my exam, she suggested I see a rheumatologist. I can’t remember asking her why. I trusted her, so I went.
I quickly learned that rheumatologists take a LOT of blood.
By the time I went in for my follow-up, I’d convinced myself my diagnosis would be extreme laziness.
Why? Well, I'd just changed careers. Moving from a relatively stressful corporate job to a lot less stressful "freelancer" status totally fit Diagnosis Lazy.
I also reasoned that my daughter had just turned one. Weren’t all new 35-year old moms tired?
Plus, I was a little chunky. Although I was in great shape when I got pregnant, I still had some baby weight to lose. I hadn’t returned to my go-to running and boot camp workouts because frankly, I never felt up to it. I figured my energy would return as soon as I quit breastfeeding, though I had stopped two months prior. I figured being out-of-shape had made me lazy.
And, as someone who had suffered from bouts of depression, I knew it could bring about physical manifestations like joint pain and headaches. I assumed when I returned for my follow up appointment, the doctor would say this:
Carie. You’re Lazy and Depressed.
Diagnosed.
Done and done.
Instead, with a dopey grin on my face, I listened as the rheumatologist used alien terms like autoimmune disorders, genetic markers, antinuclear antibody, systemic lupus erythematosus, and antiphospholipid syndrome. As he outlined how my symptoms aligned with these crazy words, my “lazy theory” grew weaker and weaker.
I had no explanation for the dang blood tests and the fevers.
Since then, I’ve seen more doctors than I care to count. An entirely new me could be built with all the blood they’ve removed from my body. I’ve had MRIs, lung function tests, and electrocardiograms. I’ve been shocked (literally). Put on steroids. Experienced steroid withdrawal. Cognitively monitored.
And my story is nothing compared to what a lot of people go through in their journey to uncover what is making them hurt.
This book may resonate with anyone who has been Real Sick.
The kind of sick that doctors say is incurable.
The kind of sick that ruins every plan you’ve ever made in every area of your life.
The kind of sick that sends you into a downward spiral of anxiety and self-pity and depression and self-loathing.
The kind of sick that forces you to your hands and knees, begging for a freaking miracle.
Well friends, I begged for that miracle. When I finally accepted that doctors weren’t going to “fix” me, I embarked on a journey to “fix” myself.
And after 10 years, I can happily report that I’ve received my miracle.
I’m even happier to report, it’s a miracle you can receive, too.
But first.
Am I “cured?”
No. There’s no cure for most, if not all, autoimmune disorders.
But, today, I’m healthier, happier, and more balanced than I’ve ever been, even before my diagnosis.
And I truly believe, you can do this, too.
If you’re ready to make a choice to always, always, choose YOU.
Let’s get started.
