Shoved to Them
It was one year ago this week that Ella was sick with a cold. A year from Wednesday that she complained of her legs “feeling tired.” A week from next Monday that was the last time she stood unaided. We’ve learned a lot this past year about doctors, insurance, family, and faith. I know it’s Holy Week, but I thought I’d share a little of what we’ve learned on our own Way of Sorrows.
Here’s a snapshot of what we’ve learned, and what we think you need to know. (If you’re ever in our position..and we hope you never are.)
1) Know your family physician – A year ago, I didn’t understand how important this relationship truly was, now I don’t know how to stress it enough. I should be able to call our family doctor and say, “Hi, this is Ella’s mom…” and have him respond, “Oh, hi Rebecca/Mrs Frech…” without having to look me up in the computer. He needs to know who you are as more than a name on a chart.
When one of the original “diagnoses” triggered an automatic CPS (Child Protective Services) investigation, it was immediately shut down by our family physician who was able to honestly say, “I know this family well, and absolutely not.” Had he answered it any other way, the investigation would have escalated quickly.
2) Be friendly and polite to the office staff no matter what – The receptionists and nurses are not responsible for doctors who run late, are rude, or necessitate a change in schedule (even if it happens repeatedly.) They have to put up with the same annoyances that you do, so be kind.
On the other hand, the wonderful friendly and helpful doctors are slammed with patients because they’re that good. Being nice to the behind-the-scenes people can cut through a lot of the red tape in getting appointments, return phone calls, and referrals. we all fight harder for the people we like. That’s just basic human nature, so make sure that you’re one of the people that the doctor and his/her staff refer to as “this is one of our favorite patients.”
3) Bribery works – I’ve said it before and will keep right on saying it, there’s nothing wrong with bringing treats for the office when you know you’re going to be a frequent flyer there. Greasing those wheels will make your life easier. May I suggest using banana bread? It’s a never-fail.
4) There is such a thing as pushing too hard – One of the most common things we’ve heard this year is to “never give up,” “demand answers,” “keep pushing,” etc. (You get the gist.) The common perception is that there’s no such thing as pushing too hard when your baby is sick. It’s sounds amazing in theory, but real life doesn’t work that way.
Pushing the wrong people too hard can land you in a place where all the doors are closed because everyone’s heard how hard you are to work with. Early on, I was scolded by my family physician for losing my temper over a neurologist’s refusal to perform a certain test . “You can’t just say any old thing you want,” he told me. “The medical community is small, and if you’re a nightmare, I won’t be able to get you the appointments that you need.”
Another time, my refusal to take ‘No’ for an answer resulted in “Possible Munchaussen’s?” being added to Ella’s chart. When the doctors start thinking you’re crazy, it’s time for you to reassess your methods.
I think the better medical advice is in Kenny Roger’s The Gambler – “You’ve gotta know when to hold ’em, know when to fold ’em, know when to walk away, and know when to run.”
5) If you disagree with something, get another opinion – We’ve heard more than our fair share of crappy opinions that weren’t supported by the medical evidence. (Do I even have to say the word Conversion?) A year ago, I’d have fought tooth and nail to change all the doctors’ opinions. Now, I smile and nod and go in search of someone who will listen. There are two caveats to this one – 1. You might be wrong, and you should allow for that possibility 2. Seeing too many doctors is a huge red flag of potential abuse. (Munchaussen’s, anyone?) This just means that you have to do your research and choose your next moves wisely. Having a family doctor who’s on your side will help this immensely. (See #1)
6) Research everything! – The amount of research that I did in the past year strains the imagination. I easily spent five hours a night (9PM-2AM) every night for nine months reading medical journals and googling my way down rabbit trails. In the end it paid off. It wasn’t any of the 18 specialists we saw who found the key to what had happened with Ella, it was me. I spent many nights emailing specialists all over the world, and had long running conversations with a few of them. I learned which tests to ask for, what results to watch for, and how to put it together. It was only when I presented all of the findings to Ella’s neurologist that he said, “Good job, Mom, you did the research that all of us doctors had no time to do, and this diagnosis truly belongs to you.”
Read everything. Email everyone. Ask tons of questions over the internet. You can’t cast too wide of a net here. People are free to ignore you on the interwebs, but hopefully you’ll catch the attention of the right one and they’ll hand you the key you need.
7) Use the correct terminology – The fact that Ella’s toes don’t wrinkle in water isn’t “weird,” it’s “proof of damage to her parasympathetic nervous system.” Last year, I had no idea that there even was a parasympathetic nervous system. This year, I can have long detailed discussions filled with painfully minute detail about how it functions, and I use all of the same words the doctors use. I now tell them “Don’t dumb it down for me, use the real words. If I don’t understand something, I’ll ask.”
There’s a different level of respect that goes along with using the correct terminology, and a greater understanding on your part about what’s being said. Learn the words and use them. You’re a part of the medical team, and you should be able to hang with them.
(More than one doctor wrote in the notes – “Mom is a – doctor? nurse? medical student? researcher?” I take that as a compliment to my googling ability and my professionalism.)
8)What you’re called and how you’re treated matters – The way people address you, the name that you’re called, is a pretty powerful thing. There are certain titles and honorifics that immediately confer a certain level of respect, it’s part of why we address physicians with the title Dr. They’ve worked and studied hard to earn that title, and deserve to be called by it. By the same token, I’ve spent 20 years as the matriarch of my family and worked darn hard and deserve to be treated with an equal level of respect – which is why I like Ella’s doctors to call me Mrs Frech.
It’s not a silly whim, but something I noticed pretty early on – how doctors addressed me directly reflected how seriously they took me. While I may not have ever been to medical school or studied to become a specialist, I am the resident expert on Ella. (Second only to Ella, herself.) While I can’t get help without them, they need my knowledge in order to be able to treat her. We have to be partners in her health care, or it all goes scary awry.
It’s important to remember that you’re not a peon asking a favor. You’re the person who hired them to perform a service for you. That gives you a certain amount of leverage in this relationship. I no longer allow (and nobody should) doctors to talk down to me as though I’m a naughty child needing to be scolded. That kind of condescension is never appropriate and should absolutely not be tolerated.
I’ve begun taking my cues from the physicians themselves about the most appropriate way to address them. If they call me Mrs Frech, then I assume a level of decorum and respond with Dr. X. If they call me Rebecca, then I assume that it’s appropriate to refer to them by their first name. We are equals in our quest to find answers and a cure, and how we refer to each other should reflect that.
Yes, the first time that I called a snooty doctor by her first name she was shocked, but after she’d picked her jaw up from the floor, her entire demeanor changed when she called me Mrs Frech. What you are called matters. It’s a psychology thing. Don’t let yourself be cast in an inferior role.
9) Know if it’s time to quit – There came a time in our battle against what we now know is Acute Flaccid Myelitis (AFM) when we had to cry uncle. The rounds of testing, specialist appointments, and dead ends were wearing us out and gaining us nothing. It was at that point that we walked away from the medical maze and began just living our lives once again.
Every family has their own line of “Enough!” Be honest with yourself when you reach it and take a break for everyone’s sanity.
Tomorrow let’s talk insurance companies, shall we?
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