"The most wasted of all days is one without laughter." ~e e cummings

Monday, January 7, 2019


We've been on the receiving end of some pretty big diagnoses before. I remember weeping in our first allergist's office when 11-month old Evan was diagnosed with 13 food allergies. I remember being told that allergic reactions can get worse with repeat exposures to allergens...making that post-anaphylactic reaction trip to the ER even scarier in hindsight....worse than THAT?!

The doctor had asked why I was crying. Um...really?...I'm the mom of a baby who was just diagnosed with POTENTIALLY LIFE-THREATENING ALLERGIES to milk, nuts, peanuts, wheat, egg, fish, shellfish, barley, oat, rye, black pepper, green olive, and cantaloupe. And you want to know why I'm crying? We switched allergists.

Then there was the time I sobbed in the office of the Pediatric Gastroenterologist upon learning about Evan's Crohn's disease. I had actually handled the initial news pretty well...we had been properly prepared by our pediatrician. It was when the GI doc said, "Listen, mama, my primary goal here is to get Evan to 18," and I practically screamed "WAIT. That's NOT A GIVEN?!" that I lost it. The doc had meant "Get Evan to his GROWTH POTENTIAL by the age 18," and he ultimately clarified as much, but the details were tragically lost in the initial statement.

Today's diagnosis, in comparison, pales. While immune-system-related and chronic, like Crohn's and some allergies, psoriasis isn't life-threatening. It won't require daily oral medication and the looming possibility of infusions, surgeries, and scary complications. An accidental exposure to a common dietary staple found in just about any kid's lunch box is not going to threaten her life.

But still. Psoriasis? She's only 6. That's a looooooooong life of inflammation management in her future.

It all started the day we moved out of our last house. Molly was pokey, but we were busy and, to be honest, we were moving ourselves out of one house and into a storage unit and I didn't have time for a sick kid. When she fell asleep on a broken down cardboard box in the middle of the garage-turned-Moving Day-staging area, I finally realized she might be coming down with something. I felt her burning forehead, unearthed our Tylenol, and dosed her. She managed to perk up and we continued on with the move.

For the next week, while we began our 3-month stay with my parents, she was more sick than I'd ever seen her. Scary high fevers, lethargy, couldn't eat...she was in pretty bad shape. We tested her for strep, but the rapid test was negative. Finally, two long and feverish days later, the culture came back positive and we were able to treat her.

About a month later, we were wrapping up the school year and, amidst the busyness of teacher gifts and final projects and fifth grade graduation, I noticed a rash on her that I hadn't seen before. She's a sensitive little thing, though, so I chalked it up to seasonal allergies or a contact reaction...a dab of hydrocortisone did the trick and I didn't think much of it again.

Over the next six months, that rash did not go away. It would flare up, then get better again, but it never cleared up completely. We had a couple of consults with our pediatrician, but were ultimately sent to dermatology at the beginning of December. He mentioned a strep-related psoriasis strain that happens sometimes in kids. I finally flashed back to Molly's scary bout of strep last spring and gratefully connected the dots. Strep-related psoriasis! He would give us a cream, knock out the rest of that virus and cure that rash once and for all! Easy peasy!

Except the miracle cream didn't work. In fact, while she was on it, she came down with a cold and her symptoms flared up again.

We went back today for a follow-up. Psoriasis, yes. Strep-related? More like strep-triggered. More like over-active immune system. More like....chronic.

I didn't cry.

She's fine. She's under the care of good doctors and we, mercifully, for now, have health insurance. We'll add another specialist to our docket, another couple of trips to the pharmacy each month, and another entry in our Family Medical History diary. We'll be fine.

I googled. I know I shouldn't have, but I did...just very quickly. I peeked, just for a moment, at comorbid conditions. Psoriatic arthritis, depression, cancer (particularly nonmelanoma skin cancers, which, thanks to my basal cell, she already had a family history of...)...and Crohn's disease.

Weird, huh?

As we walked back through the hallways of the large teaching hospital after our appointment, I looked at the dozens and dozens of people around us, heading to or from appointments of their own. Hundreds more in the rooms above us. How many of them, or their loved ones, received or will receive a difficult or life-altering or annoying or complicated or devastating diagnosis today?

In the grand scheme of life, we got off easy today. We'll manage. She'll be fine.

Lesson Learned:

Maybe it's because I'm so angry about the state of our nation these days. Maybe I would feel exactly the same even if our healthcare industry (and everything else) wasn't in complete shambles....but I think what Molly's diagnosis (and Evan's before hers) makes very clear to me, is that, even with insurance, this is going to cost us a lot of money. From specialist co-pays to the high cost of prescription drugs....we're going to be hitting deductibles and making good use of our health savings account. Having kids with chronic conditions is EXPENSIVE and that's not right. I can't help but think about the kids with rashes similar to Molly's, or anemia similar to Evan's, who can't go to a doctor because their parents can't afford to bring them. Their symptoms aren't "bad enough." Their little bodies coping the best they can but struggling against chronic inflammation. I can't imagine having to weigh the severity of the symptoms vs. the cost of the appointment. I am so grateful that we don't have to make those hard choices, but I am so angry that so many in this "greatest country in the world" do.

Of those people in the hospital today who received news they didn't want to hear, how many will go bankrupt as a result of their disease? How many will need to set up a GoFundMe to help them cover the cost of medical treatment? The number isn't zero. And that's the problem.

Our country, in so many ways, is broken. My faith in our current system is shattered. I am looking to the 116th Congress, sworn in just days ago, to bring some common sense, problem-solving, and decency to the table. Restore my faith. Rebrand this country as one for liberty and justice and healthcare for ALL. I'm hopeful...prove me right.