{"id":3921,"date":"2015-03-30T15:48:18","date_gmt":"2015-03-30T20:48:18","guid":{"rendered":"http:\/\/admin.patheos.com\/blogs\/rebeccafrech\/?p=3921"},"modified":"2015-03-30T21:34:04","modified_gmt":"2015-03-31T02:34:04","slug":"9-things-about-health-care-that-we-learned-this-year","status":"publish","type":"post","link":"https:\/\/www.patheos.com\/blogs\/rebeccafrech\/2015\/03\/9-things-about-health-care-that-we-learned-this-year.html","title":{"rendered":"9 things about Health Care that we learned this year"},"content":{"rendered":"\n<\/head>

\"WP_20131103_001\"<\/a>
One year ago today<\/span><\/figcaption><\/figure>\n<\/p>

It was one year ago this week that Ella was sick with a cold. A year from Wednesday that she complained of her legs \u201cfeeling tired.\u201d A week from next Monday that was the last time she stood unaided. We\u2019ve learned a lot this past year about doctors, insurance, family, and faith. I know it\u2019s Holy Week, but I thought I\u2019d share a little of what we\u2019ve learned on our own Way of Sorrows.<\/p>\n

Here\u2019s a snapshot of what we\u2019ve learned, and what we think you need to know. (If you\u2019re ever in our position..and we hope you never are.)<\/p>\n

1) Know your family physician<\/strong> \u2013 A year ago, I didn\u2019t understand how important this relationship truly was, now I don\u2019t know how to stress it enough. I should be able to call our family doctor and say, \u201cHi, this is Ella\u2019s mom\u2026\u201d and have him respond, \u201cOh, hi Rebecca\/Mrs Frech\u2026\u201d without having to look me up in the computer. He needs to know<\/em> who you are as more than a name on a chart.<\/p>\n

When one of the original \u201cdiagnoses\u201d triggered an automatic CPS (Child Protective Services) investigation, it was immediately shut down by our family physician who was able to honestly say, \u201cI know this family well, and absolutely not.\u201d Had he answered it any other way, the investigation would have escalated quickly.<\/p>\n

2) Be friendly and polite to the office staff no matter what<\/strong> \u2013 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.<\/p>\n

On the other hand, the wonderful friendly and helpful doctors are slammed with patients because they\u2019re 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\u2019s just basic human nature, so make sure that you\u2019re one of the people that the doctor and his\/her staff refer to as \u201cthis is one of our favorite patients.\u201d<\/p>\n

3) Bribery works<\/strong> \u2013 I\u2019ve said it before and will keep right on saying it, there\u2019s nothing wrong with bringing treats for the office when you know you\u2019re going to be a frequent flyer there. Greasing those wheels will make your life easier. May I suggest using banana bread<\/a>? It\u2019s a never-fail.<\/p>\n

4) There is<\/em> such a thing as pushing too hard<\/strong> \u2013 One of the most common things we\u2019ve heard this year is to \u201cnever give up,\u201d \u201cdemand answers,\u201d \u201ckeep pushing,\u201d etc. (You get the gist.) The common perception is that there\u2019s no such thing as pushing too hard when your baby is sick. It\u2019s sounds amazing in theory, but real life doesn\u2019t work that way.<\/p>\n

Pushing the wrong people too hard can land you in a place where all the doors are closed because everyone\u2019s heard how hard you are to work with. Early on, I was scolded by my family physician for losing my temper over a neurologist\u2019s refusal to perform a certain test . \u201cYou can\u2019t just say any old thing you want,\u201d he told me. \u201cThe medical community is small, and if you\u2019re a nightmare, I won\u2019t be able to get you the appointments that you need.\u201d<\/p>\n

Another time, my refusal to take \u2018No\u2019 for an answer resulted in \u201cPossible Munchaussen\u2019s?\u201d being added to Ella\u2019s chart. When the doctors start thinking you\u2019re<\/em> crazy, it\u2019s time for you to reassess your methods.<\/p>\n

I think the better medical advice is in Kenny Roger\u2019s The Gambler <\/a>\u2013 \u201cYou\u2019ve gotta know when to hold \u2019em, know when to fold \u2019em, know when to walk away, and know when to run.\u201d<\/p>\n

5) If you disagree with something, get another opinion<\/strong> \u2013 We\u2019ve heard more than our fair share of crappy opinions that weren\u2019t supported by the medical evidence. (Do I even have to say the word Conversion?) A year ago, I\u2019d have fought tooth and nail to change all the doctors\u2019 opinions. Now, I smile and nod and go in search of someone who will listen. There are two caveats to this one \u2013 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\u2019s, anyone?) This just means that you have to do your research and choose your next moves wisely. Having a family doctor who\u2019s on your side will help this immensely. (See #1)<\/p>\n

6) Research everything!<\/strong> \u2013 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\u2019t 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\u2019s neurologist that he said, \u201cGood job, Mom, you did the research that all of us doctors had no time to do, and this diagnosis truly belongs to you.\u201d<\/p>\n

Read everything. Email everyone. Ask tons of questions over the internet. You can\u2019t cast too wide of a net here. People are free to ignore you on the interwebs, but hopefully you\u2019ll catch the attention of the right one and they\u2019ll hand you the key you need.<\/p>\n

7) Use the correct terminology<\/strong> \u2013 The fact that Ella\u2019s toes don\u2019t wrinkle in water isn\u2019t \u201cweird,\u201d it\u2019s \u201cproof of damage to her parasympathetic nervous system.\u201d 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 \u201cDon\u2019t dumb it down for me, use the real words. If I don\u2019t understand something, I\u2019ll ask.\u201d<\/p>\n

There\u2019s a different level of respect that goes along with using the correct terminology, and a greater understanding on your part about what\u2019s being said. Learn the words and use them. You\u2019re a part of the medical team, and you should be able to hang with them.<\/p>\n

(More than one doctor wrote in the notes \u2013 \u201cMom is a \u2013 doctor? nurse? medical student? researcher?\u201d I take that as a compliment to my googling ability and my professionalism.)<\/p>\n

8)What you\u2019re called and how you\u2019re treated matters<\/strong> \u2013 The way people address you, the name that you\u2019re called, is a pretty powerful thing. There are certain titles and honorifics that immediately confer a certain level of respect, it\u2019s part of why we address physicians with the title Dr. They\u2019ve worked and studied hard to earn that title, and deserve to be called by it. By the same token, I\u2019ve spent 20 years as the matriarch of my family and worked darn hard and deserve to be treated with an equal level of respect \u2013 which is why I like Ella\u2019s doctors to call me Mrs Frech.<\/p>\n

It\u2019s not a silly whim, but something I noticed pretty early on \u2013 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<\/em> the resident expert on Ella. (Second only to Ella, herself.) While I can\u2019t 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.<\/p>\n

It\u2019s important to remember that you\u2019re not a peon asking a favor. You\u2019re the person who hired<\/em> 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)\u00a0 doctors to talk down to me as though I\u2019m a naughty child needing to be scolded. That kind of condescension is never<\/em> appropriate and should absolutely not be tolerated.<\/p>\n

I\u2019ve 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\u2019s 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\u00a0 each other should reflect that.<\/p>\n

Yes, the first time that I called a snooty doctor by her first name she was shocked, but after she\u2019d picked her jaw up from the floor, her entire demeanor changed when she called me Mrs Frech. What you are called matters. It\u2019s a psychology thing. Don\u2019t let yourself be cast in an inferior role.<\/p>\n

9) Know if it\u2019s time to quit<\/strong> \u2013 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.<\/p>\n

Every family has their own line of \u201cEnough!\u201d Be honest with yourself when you reach it and take a break for everyone\u2019s sanity.<\/p>\n

\u00a0<\/p>\n

Tomorrow let\u2019s talk insurance companies, shall we?<\/p>\n

\u00a0<\/p>\n<\/body><\/html>\n","protected":false},"excerpt":{"rendered":"

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