Big News!

I have some excellent news.

I don’t have lupus.Carie Sherman

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).

Nuisance, indeed.

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.


#SpooniesUnite! After All, We’re Here to Save the World

I lurk around Twitter hashtags like #lupuschat and #spooniechat and learn. Recently I participated.Carie Sherman

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. 

#spooniesunite


High Blood Pressure in Lupus-like Disease in Mice May Be Caused by White Blood Cells

Mycophenolate mofetil (MMF) was tested in laboratory mice with a systemic lupus erythematosus (SLE)-like disease, and was found to lower the animals’ blood pressure, levels of autoantibodies, and the number of specific white blood cells called B-lymphocytes. Patients with SLE often have high blood pressure, which may be caused by B-lymphocytes, the study reports.

Click here for full story.

 

 


CDC: Arthritis Disables One in Four American Adults

About 54 million Americans have been diagnosed with arthritis — a debilitating joint disease that takes many forms including lupus and rheumatoid arthritis — and 24 million are disabled by some sort of the disease. That means one in four Americans is living with the disease today, up 20 percent since 2002, the Centers for Disease Control and Prevention (CDC) says in its “Vital Signs” report.

Click here for the full story.