February 2, 2017

When Being Right Doesn’t Matter, or Does

Something was wrong with my baby daughter.

I said it to her pediatrician when she was just a few weeks old. He laughed at me, told me she was fine.

I said it in the emergency room when her chest and throat were retracting with her rapid breath. They gave her meds, watched her for a few days, sent her home with me.

I said it to her new pediatrician. She looked more closely, waited, told me to sleep-train her.

I said it again when everything failed, when she wouldn’t eat solid food, wouldn’t sleep through the night, couldn’t make it through a cold without hospitalization. And finally, finally, someone found the something. When they did, nobody said, “oops.” They fixed her congenital heart defect, the source of every problem.

I was right, but it didn’t matter.

January 20, 2017

They Called Me Again

I was watching tv with my family over dinner on Martin Luther King, Jr. Day last week when the phone rang. The caller ID told me that it was the children’s hospital where my daughter spent years being treated for issues stemming from a congenital heart defect (even though not all of her doctors realized it). We’d not had a call from that hospital in over a year.

“Hello, is this the parent of Samara Lewis?” someone asked.

I walked several rooms away from my family and answered, “Yes, who is this?”

“Thank you ma’am, this is the gastroenterology practice at [hospital name]. We’re just calling to discuss the socioeconomic impact of Samara’s treatment for eosinophilic esophagitis. Do you have time for a quick survey?”

I paused. I paused for so long that the woman asked if I was still there. I paused long enough to talk myself through the waves of anger, heartache, and indignance that crashed over me as I pondered the audacity of that question. I paused long enough to think about how I’d like to answer that question. Continue Reading…

January 13, 2017

CVS Throws Us a Life Preserver

Several months ago, I wrote a post called EpiPens Are for Moms, Too. It was edited and republished by The Mighty (with my permission), because I felt that the information I’d gleaned from my experience trying to buy a EpiPen from a pharmacy was important enough to share with as many people as possible. This week, I have news about this experience that is even more important to share.

Some background: I have a severe, life-threatening allergy to seafood. I’ve reacted with equal intensity to shellfish and regular fish, and that reaction is terrifying. My mouth begins to itch — an early warning sign — and soon afterward, I begin to feel my throat go numb. Once that sensation begins, I know that I have precious few moments before I will begin to have trouble breathing. That’s my cue to get help quickly.

To avoid dying from the accidental ingestion of seafood, I carry an EpiPen. EpiPens are epinephrine auto-injectors meant temporarily to arrest a severe allergic reaction quickly so that the allergic person can get to a hospital. The term “EpiPen” is actually owned by a company called Mylan, which owns the rights to that particular model of epinephrine auto-injector and, this past fall, came under intense public anger for raising the price of these life-saving devices exponentially. You can read more about this price hike and the history of the EpiPen brand on Timeline.

After the frightening allergic reaction I had to fish oil in a chewable Vitamin C tablet in late 2015, which I wrote about in my original post, I went to my allergist for a refill of my prescription for an epinephrine auto-injector. Though I was careful to get a prescription that would allow me to choose a cheaper, generic auto-injector instead of the Mylan brand EpiPen, I had a very hard time getting the pharmacy to fill the prescription for me. I wrote in September about how the pharmacist first gave me the Mylan brand without asking, charging me $280, then hemmed and hawed about the existence of a generic, then claimed my doctor wouldn’t prescribe a generic and, finally, after I stood my ground, suddenly remembered a coupon from Mylan’s web site that would allow me to get the name brand for free.

It was a maddening experience to have all alone in a pharmacy with no one but myself to keep in check. If I’d had several children with me, I can only imagine that my patience for waiting might have given out long before the pharmacist “remembered” the Mylan coupon.

Yesterday, though, something interesting happened. Continue Reading…

January 4, 2017

Fabio Napoleoni’s Hearts

Holding hands with my eleven-year-old daughter, Sammi, as we walked along the sidewalk earlier this week, my husband and older daughter just ahead of us, I saw bright colored paintings in the window of an art gallery ahead. The Atlantic Ocean to our left going dark and choppy under a setting sun, I called ahead, “Hey, look! Can we go in there and check it out?”

Sammi scampered in ahead of me and immediately said, “Woah!” The gallery was full of the bright colors of several painters working in primary palettes. Big multi-hued dogs and other animals covered one wall, and my daughters immediately spread around the space to look more closely. I started on one side, wandered, admired, turned around, and brought myself back to a particular wall covered by paintings and prints by one particular artist named Fabio Napoleoni. I was drawn to a series with a small mummy-like character — equal parts maudlin and endearing, and always holding a red, misshapen heart. That little character had many small adventures, all involving that heart:

Changing the Atmosphere – Fabio Napoleoni

December 29, 2016

Paper and Breath

I have spent most of the last two weeks in the grips of a terrible asthma flare, brought on by whatever powerful viral misery has a hold on the country right now. Though I’m not immune to illness — I get what I assume is the average number of colds each year — this one was particularly frightening for me, and I am convinced that it sent cosmic signals out into my community, since three separate friends left bottles of juice on my porch and ran like heck. As I curled under an enormous down blanket and drowned my tickling throat — which threatened constantly to send me into another bizarre, high-pitched coughing fit reminiscent of someone stepping on a puppy — I did little more than watch hours of television and poke half-heartedly at my phone from time to time.

This is not my normal position in the world. My normal life since children has been a patchwork of several kinds of activity: my part-time business in web site design and development (hire me!), childrearing, and housewifery. In the two weeks I spent on hiatus nursing my lungs along, I was able to pull a laptop onto the couch from time to time to douse the fires of my business, and my children managed to handle their own rearing at their ripe ages of 14 and 11. The housewifery, however, fell into the crevices between couch cushions, where it waited, growing funky and fuzzy with neglect.

Of course, I have a partner, a fantastic husband who is always ready to help — and he did. The dishes got done and the lizard got fed; children were driven where they needed to go when I could not summon the strength. However, there were several administrative tasks that I had intended to manage before the end of the year, and they began to weigh as heavily on my chest as the infection I was fighting. When I finally felt up to tackling them, I found it was literally The Last Minute, which, of course, is the most productive minute of any project. The most pressing of these tasks was the one billing-related job I’ve managed in our marriage since our younger daughter, Sammi, was born. This task, coincidentally, was born with her. Continue Reading…

Swallow, My Sunshine

Feeding a Family in Medical Uncertainty

Category Archives: hospital

When Being Right Doesn’t Matter, or Does

They Called Me Again

CVS Throws Us a Life Preserver

Fabio Napoleoni’s Hearts

Paper and Breath