The house was quiet last Friday night after an evening of happy chaos. My children tucked into bed, I faced the kitchen with resolute attention.
On the stove, a nearly-empty pot of lentil stew was developing a crust. Next to it, the picked-clean brownie pan shone with spray-grease, and a cutting board with the shreds of peeled carrot and the ends of a cucumber was topped with my best chopping knife, visibly dirty. The sink was empty, but clean dishes dripped on a towel on the counter above my humming, hardworking dishwasher. Every measuring cup and spoon in the house awaited me.
I put on some quiet music and hatched a plan. First, set the oven to pre-heat. Get the next set of ingredients ready before you tackle the pots on the stove. Make some tea.
Every moment saved is vital to a mission of importance. I learned this in the years I followed this same set of late-night tactics to feed my family under a set of ridiculous dietary restrictions. In the evenings, I often made snacks, planned the next night’s meal or the next morning’s breakfast. I tried to clean my kitchen every night too, so that even I could start fresh the next morning.
It didn’t change my daughter’s diagnosis if I stayed on top of meal planning and dishes, but it contributed in a different way. When I didn’t do these things, I woke to a set of daunting tasks that kept me from pursuing the bigger issues of my daughter’s health care. If the day started with me unprepared, I played catch-up and my family absorbed that energy, too. Giving my family some sense of normality in what seemed like totally abnormal circumstances meant more work for me, but the results were worth it. As we dealt with a new set of daily routines and limited access to our previous life, whatever I could do to lengthen the fuses of my family had value.
I had to feed my family through that crisis. And now, I’m trying to feed my larger family through what’s to come. Continue Reading…
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…
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.
When my daughter Sammi was five, Halloween could have been just horrible.
Just a few months earlier, Sammi had been diagnosed with a disease called eosinophilic esophagitis. An inflammatory condition of the esophagus — the tube that runs between the mouth and the stomach — it is poorly understood and responds to only a handful of imperfect treatments. The treatment we chose for her was called the Six Food Elimination Diet, a set of food restrictions that required her to avoid anything with dairy, soy, eggs, nuts, fish, or wheat. We were already vegetarians; this was a huge lifestyle change for our entire family.
Sammi had just started kindergarten, learning to read and write and follow instructions in a classroom that necessarily had been forced to eliminate Play-Doh (wheat) and to keep a small box with “Sammi-safe” snacks available for the days — most days — when she could not eat the shared snacks brought by her classmates. It was a rough start. And then, it was Halloween.
On this particular diet, the only kind of typical Halloween candy she could eat were Smarties and Dum-Dums. All other candies contained a forbidden item or were produced on equipment that might be shared with a forbidden item, and so I tried to figure out how to save Halloween. How would it be to walk from house to house and say, over and over again, “No, you can’t eat that one. No, you can’t eat that one either. No, no, no”?
Finally, I decided to solve our problem with a combination of money and magic. Continue Reading…
The back of the vitamin c bottle that nearly killed me
By now, most people have heard about the unconscionable hike in the cost of EpiPens, the emergency epinephrine auto-injectors used by people with severe allergies to stop the swelling of their throats that can kill them if they’ve been exposed to the food to which they’re allergic. These life-saving devices were earning Mylan, the manufacturer of the EpiPen, over a billion dollars a year by the end of 2015. As has been widely reported in the press, the company decided to hike the price of the auto-injector once again this year, just as they have every year since they acquired the patent in 2008. As a business, this is a brilliant profit-making move. They have a virtual monopoly on epinephrine auto-injectors in this country, and as such, Mylan now earns 40% of its total profits just from the sale of the EpiPen.
As a mother, I appear to be a good target for Mylan’s marketing efforts, which are well-documented. After all, parents of children with food allergies are constantly worried about the dangers in a world filled with potential allergy triggers. These mothers — wiping down surfaces, bringing “special” cupcakes to class parties, handing specially-printed cards to waiters and walking back into restaurant kitchens to inspect the cooking surfaces just to be sure are easily convinced to buy one or two extra EpiPens. One for home, one for the car, one for school, one for Grandma’s house…
Mothers do this largely because we cannot trust children to advocate for themselves in the same way that we can advocate for them. Children are more often the ones pictured in the ads, like the ones here and here. These hits mothers exactly where they are most vulnerable. Mothers, in many cases, will do almost anything to protect their children.