11300 W. 44th Ave.
Wheat Ridge, CO 80033
5 p.m. – Walk
7 p.m. – Event Concludes
I have some excellent news.
Now, don’t jump to any conclusions. I have not been cured.There is no cure for lupus!
And I’m still sick. My doctor changed my diagnosis from undifferentiated connective tissue disease to primary Sjogren’s Syndrome with fibromyalgia. (And IBS and GERD, but who’s counting?) Like lupus, UCTD and Sjogren’s are both systemic autoimmune disorders.
As long as I keep taking my meds and practicing radical self care, my doc thinks I’ll stay relatively healthy, dealing mostly with “nuisance” symptoms (like, needing 12 hours of sleep or being unable to grip a pencil or move without significant pain).
My path to diagnosis is not unusual. On average it takes lupus patients six years for proper diagnosis. Misdiagnosis is common. I never met all the diagnostic criteria of lupus. And like this website says, UCTD can, over time, evolve into more specific connective tissue diseases like lupus or Sjogren’s or scleroderma.
So, what’s next?
I spoke with Lupus Colorado’s executive director, and we agreed that I would stay on for a while and continue writing about issues that are common for lupus patients. If you’ve called Lupus Colorado lately, you likely spoke with Kesha. She’s shared with me her story of getting diagnosed with lupus, and I’m working on a post to share her inspirational story with you.
I’m also, as of this morning, going to go on an elimination diet with the hope of reducing inflammation in my body and regaining some of the energy I so desperately want back. I’m working with Dr. Julie at Ascent Health Center. She’s assured me that I’m not a lost cause, that I can feel better by making some additional lifestyle changes. So I’ll be sharing my experience with this, as well!
Finally, a sincere thank you to Lupus Colorado and all of its readers for supporting me through this gray lupus-limbo I’ve been dancing in for the last five years. I’ve enjoyed connecting with each and every one of you! And look forward to sharing more stories about navigating life with a chronic illness.
I’d been avoiding Twitter because my own self care requires distancing from drama. In fact, I only participated because of a stomach bug: Feeling Oh-So-Sick allowed me to ditch the positive attitude and “this chronic illness happened to me for a reason” mentality and embrace the support of a community who gets it.
I shared stuff that felt icky. Yet everything I said was met with love and support. Total strangers, reaching out, sometimes across oceans, to say, I get it. I’m sorry. Been there. Done that. Try this. Here’s a (soft) hug.
We’re a diverse cast, us spoonies. (If you’re not familiar with The Spoon Theory, learn about it here.) We come from all backgrounds and all ethnicities and all career paths. We’re nurses and activists and advocates and artists and lawyers and bank tellers and mountain-men. We’re single, taken, complicated, moms, dads, brothers, sisters, teenagers, grandmas, straight, queer, non-gender conforming. We’re rich and we’re poor and shades of in-between. And we are, as individuals, so much more than what’s written on our medical charts.
The support I received led me to a single hypothesis: Spoonies are here to save the world.
When Your Body Fails You
When you live with a chronic illness, you get cracked wide open. A fundamental piece of you—the body you inhabit—has taken over your life. You may not physically bleed, but the wound is there and the wound is deep. Deeper than I ever thought I’d admit.
Spoonies have every reason to be miserable ass people. Physical pain, dependence on medications that make us puffy and damage our kidneys, lifestyles that come to screeching halts, issues that poke holes in our self-esteem. Fear abounds, with the ever present thought of, what’s-my-body-gonna-throw-at-me-next?
And yet, we’re not miserable. We’re kind. We’re creative. We’re supportive. We’re open. Each and every one of us is in the varied stages of learning hard life lessons.
Chronic illness teaches us things everyone can benefit from. We understand our medications will only take us so close to health. We embrace self-care, nutrition, meaningful work, spiritual guidance, and living a creative life. As a group, spoonies are (as the kids say), mindful AF.
Even our doctors are taking a cue from us. I’ve written about mindfulness programs for physicians twice this month. Mindful physicians find more joy in life and with their patients. They are far less likely to experience burnout in their careers, and this mindfulness helps them provide better care.
Chronic illness teaches spoonies how to be compassionate human beings. We strive each day to who compassion for our neighbors, and we struggle each day to be compassionate with ourselves.
It seems to me that this world could use a whole lot more compassion.
Together We Can
As individuals, spoonies only have so much to give. I often feel defeated when I think of all the ways I would be part of X or Y or Z … if I were healthy.
But together we’re a powerful force. The love we provide to each other, the compassion we teach to those who love us—that’s the kind of stuff that changes things. That’s the kind of stuff that this world seems to lack. Maybe that’s, in part, the reason we’ve found ourselves in the spoonie role.
Thank you, spoonie community, for being the love that this world needs. Thank you for your unending support and for sharing experiences that make us feel less alone. Thank you for teaching doctors what patient-centered care really looks like, and for teaching us as individuals that we’re so much more than our diagnosis.
My family and I just shared a fun-filled week with a highly contagious stomach virus. And when a friend I hadn’t spoken to in a while called and asked how I was, I found myself giddy at the prospect of sharing how I spent an entire day with my head in toilet.
Which is just so, so messed up.
And yet, it felt so good to be so confident in just how sick I really was.
See, there’s at least 24 hours of total stomach virus bliss where No One, NO ONE, wants you around. Client meeting? Canceled without guilt. Dinner? Unmade with no expectation. Deadlines are missed, pets go unwalked, houses stay cluttered.
Entire cruise ships understand the ferociousness with which a gastrointestinal virus can hit. In fact, I’m fairly certain that nearly everyone on the planet gets how life comes to a full stop when you’re in the throes of viral gastroenteritis.
This is so not the case in the land of Invisible Illness. Every person with an invisible illness has varying levels of symptoms, pain, and seriousness. But many of us living with chronic illnesses like lupus live with certain truths:
(Of course this isn’t all of us. But I share, just in case anyone else feels like me.)
Let’s go back to that stomach virus most of us are intimately acquainted with. Do me a favor: Think back to how you felt about 24 hours after the last incidence of vomiting those three sips of water you thought you were ready for, alas you were not. Right around the time you’re able to hold down your 7-Up sips and nibbles of saltines. Yes, you’re miles from where you were 24 miserable hours before. But maybe you’re still a bit feverish. You feel weak—exhausted if you’re being honest. If you HAD to, you might be able to half-ass it through your normal day. (But really, only if you HAD to.)
I can’t speak for everyone with a chronic illness. And I’m fortunate that my baseline symptoms aren’t so serious that I feel like someone in the violent first hours of Norovirus. But I do regularly feel like the day after vomiting stops.
And while I am infinitely better at self-care than I was a few years ago, there are many days that I put on a smile and plow through my regular routines feeling like stomach flu Day 2.
Invisible illnesses like lupus, fibromyalgia, Sjogren’s Syndrome, Celiac disease, arthritis, bipolar disorder, chronic fatigue syndrome, ankylosing spondylitis, rheumatoid arthritis, colitis, Lyme disease, migraines, MS, diabetes, erythromelalgia, Raynaud’s—Holy Crow this list is way too long and I’ve left out hundreds!— are misunderstood.
My brain knows that I should feel no shame for my illness. Yet the thrill I felt about sharing that I had a Real, Tangible, Everybody Gets It Puke Parade shows I have a lot of work to do.
*I know that we only use the term “flu” for influenza, the respiratory virus. But you try finding a rhyme for “gastroenteritis.”