One Patient’s Story about The Accountable Care Act

I know that the Accountable Care Act – known by most as Obamacare – isn’t perfect. But with all the uncertainty that now Carie Shermansurrounds the act, I wanted to share my story about what Obamacare meant for me.

When I got sick, I was on a group health plan through my partner’s work. My condition required me, at first, to see my rheumatologist monthly. Even with a group health plan, it was $60/visit for the copay alone. Tack on the necessary X-rays, MRIs, lab testing, prescription medications, and I was spending hundreds of dollars a month just to keep myself out of the hospital.

Our financial situation was such that I needed to work. I wanted to work. But working a traditional 40-hour workweek wasn’t feasible. I was too sick.

So I started my own business. And my business quickly became successful—in spite of my illness. I loved writing, and I could literally write from my bed if necessary to meet client deadlines. Some days were tougher than others, but I was contributing to our family while doing the best I could to feel better.

Then my partner’s situation changed. And we were without health insurance. We stayed on COBRA for as long as we could. Then we faced the task of purchasing individual health insurance in a pre-Obamacare world.

I imagine the underwriters receiving our application laughing their assess off as they marked our application with a big red DENIED.

Because of pre-existing conditions, we couldn’t get coverage. My three-person family was without health insurance until Obamacare made coverage open for everyone.

A lot of people argue that letting everyone into the insurance pool is the reason that costs have gone up. Which of course has merit. But without basic coverage, sick people like me didn’t have access to the preventive measures that make up the bulk of caring for people with chronic illness. Without seeing my doctor regularly and coverage for my prescriptions, what might have happened?

I’ll tell you one thing: I could have gotten sick. Really sick. The kind of sick that requires a late night visit to the emergency room. The kind of visit that causes people like me—people who work, who are contributing to this economy—to deplete savings, to overextend credit, to declare bankruptcy.

The ACA gave us coverage we couldn’t have had. The coverage alone was costly, but it limited the amount of debt we could have possibly gone into had we required hospitalization. And it allowed us to budget for preventive care, which helped us to stay relatively healthy.

I hope more is done to address the cost of care in our country. But I hope everyone thinks long and hard about what it will mean to take health insurance away from the 20 million folks who have the insurance they need to at least attempt to be responsible stewards of their own health care.



My Bully, My Brain

My brain treats my body like a hormonal teenager treats her 23-year old step mom.Carie Sherman

For as long as I remember, my body has never been good enough for me. When I was a little girl, I hated it for being so small. Then I became a teenager. Suddenly it wasn’t small enough. The pattern repeats throughout my life: Not tall enough, tan enough, skinny enough, strong enough. Not fast enough, not coordinated enough. Not enough. Period.

And while years of psychotherapy have helped me get past a lot of my self-hate, I still hate something about my body: Now, it’s never healthy enough.

(Go figure. Hardy har har.)

My body is always to blame. When I’m tired but my brain says it’s IMPOSSIBLE to say NO, I defer to my brain. When I eat, I eat what my brain says to eat, hitting that voice in my head saying “a pint of mint chocolate chip will hurt your gut for days!” like a kid at Chuck E. Cheese playing Whack-A-Mole. Even after years of living with chronic illness, Mind Over Matter is my mantra with exercise—tweaked knee be damned!

And guess what? When conflict arises (especially the kind of conflict that requires me to disappoint someone else), my body is the first to break.

Poor thing. It’s never been listened to. Until it started holding me hostage with illness.

I realized this yesterday as fatigue forced me onto the couch. There I marveled at an observation I made while talking with my BFF the night before: “BFF,” I said. “You know your problem? You think too much! Your brilliant brains are keeping you stuck in this situation you complain of!” (All of this is communicated in my it’s-Friday-night-and-I’m-three-drinks-deep voice, delivered with my condescending I’ve-got-my-life-figured-out face.)

I recalled this as my brain was doing its best to will me off the couch. In fact, my bully brain was pressuring me to do ALL THE THINGS (fold the laundry, clean out your closet, arrange some flowers, feed the dog, run to Goodwill, write 1,000 words…).

My plan was to accomplish ALL THE THINGS while my husband and daughter were at swimming lessons. A 30 minute swimming lesson that’s located 10 blocks from our house.

I send my BFF an apology for my lecture and admitted to her my epiphany. Then I took a deep breath. I paid attention to my body.

It was happily fed. It had already been on a walk. And it was tired. It wanted to stretch. It wanted rest.

I thought of my poor body. I thought of my heart. I watched as my brain totally flipped out about wasting the only solo 30 minutes I’d get all weekend.

I fell asleep.

And when I woke up, I had the energy to be present with my family the rest of the day.

Maybe it’s time I start being a better listener. To my BFF and my body.

Does your over-thinking brain hold you back?


I Have a Hard Time Asking For Help

The 2016 Lupus Colorado Community Walk was a couple weeks ago. Prior to Carie Shermansaid walk, I surprised myself: I pledged to raise money.

I knew that I’d need to ask people in my inner circle for money. It felt like I was asking for help. And I don’t like asking for help.

It made me feel really exposed.

I might seem like someone who is totally cool with expressing my deepest and darkest. For the most part, I am! Just as long as I’m expressing myself to strangers. And when I write this blog, I picture the audience as strangers. (Strangers with whom I have a common identity thanks to this massive pain in the rear end called lupus.)

I don’t write this blog for my healthy friends, family, and colleagues. So asking them to give me money is like admitting to the world that I’m sick and can’t do it alone.

Unless you’ve physically spent more than a few hours with me at any given time, I probably don’t seem sick. My illness has made me an excellent planner and an excellent faker. When I see most of the friends, family, and colleagues I solicited money from, I’ve planned and napped and drank more coffee than I should have. I’ve over-applied mascara and bright lip-gloss and, applied a bucket of concealer on the dark circles under my eyes. I’ve rearranged my day as much as possible to give them my very, very best.

But here’s the funny thing: I asked for help; I asked for pledges; and so many people responded. So I’m writing this post to say thank you, from the bottom of my heart. First to my husband, who wrote what he wrote on his race bib and made me fall in love with him all over again. Next to my team—who gave up their Saturday afternoons and showed up with smiles. Janellen, Sarah, Kelli, Deb, and the little people:  You’re awesome. Third, thank you to everyone who donated. Your generosity stuns me. The nice words you included along with your donations were the ice cream on my gluten free lemon-ricotta pancakes. I raised three times—THREE TIMES—more than my goal!

So, to all my colleagues, friends, and family who donated to the lupus walk, thank you.

And to those people who are closest to me, the ones who routinely spend more than a few hours with me, the ones who routinely see my broken bits and love me anyway, thank you for supporting my walk. And for holding all my shattered pieces together in a way that’s more complete than had I never been broken by lupus at all.

The 2016 Lupus Colorado Walk raised $40,000 – well over their $25,000 goal – and every penny stays in Colorado to help people living with lupus. Thank you!