Letters to My Girls

Your Health, Your Doctor, and Self-Advocacy

My Dear Daughters:

We will spend lots of time talking about your health.  We'll talk about how to care for your body, how to feed it, exercise it, nourish it, respect it.  I'll tell you the mistakes I made and why.  We won't focus on what we look like, how much we weigh, cellulite, or emotional eating - I promise.  I won't tell you "it's all in your head" and I will listen compassionately to your thoughts about your bodies.  If there's a question about whether you need a doctor, I will always take you to the doctor.  If we have to go to three doctors, we will go. 

I was faced today with one of the most baffling mysteries of medicine.  No, it wasn't the fact that I'm now ten days into an allergic reaction to a mystery substance, though that certainly is one for the books.  It's the fact that I'm standing here ten days and three doctors into the situation, and I still feel odd about stating the facts of my own case. 

Doctor One put me on anti-histamines for a massive allergic reaction, in part because he never looked at the hives on my body and consequently underestimated the condition.  Doctor Two told me two days later upon seeing the head-to-toe hives and swelling that I was "so far gone" by the time she saw me, she had no choice but to hit me with massive steroids to control the condition.  Doctor Three came into the ER room saying, "I don't know what else I can offer you..." before even looking at me (he was about to send me home), and then once he saw my ballooning head and realized I was having massive chest pain and shooting pain down my arms that maybe I needed a little epinephrine and some additional anti-histamines. 

I'm not so arrogant that I can argue with any of the three doctors.  I think they all did the best they could under the circumstances and evaluated the situation as accurately as possible.  The thing that has me absolutely bamboozled is that, once I finally had a clear enough head to think through the situation and do a little research, I still felt odd stating my thoughts to the doctor this afternoon. 

First, suppose I take responsibility for the Doctor One not getting the whole picture because I wasn't assertive enough about making him look at my hive-covered ass and melon-like kankles.  Had I insisted he stay in the room while I dropped my pants, perhaps he would have understood why I was there at the Urgent Care at 8:00 a.m. on Monday morning. 

Second, I have sympathy for Doctor Three walking into the room with a conclusion before even looking at me or talking to me.  Had I come in crying, exclaiming in pain, breathless, irrational - perhaps I would have made a more impressive patient.  I shouldn't have been so stoic, I guess. 

Doctor Two, who clearly got the message and put me on the right drugs at the right time, got it just right except for the fact that we didn't anticipate the chest pain thing on a day she wasn't in the office. 

But, here's the thing.  I spent some time researching what happened to me today, before going in for follow-up treatment this afternoon.  I had several possible conclusions about what my body did, but I'm not a doctor.  I know that, so I went in and patiently explained that I had lots of information and needed help putting it all together. 

Since I had failed so miserably stating my case to the doctors to begin with, I wanted to be sure at this visit to explore what was going on in my head - make sure I didn't leave anything out that was potentially important.  I wanted to take an active role - not just sit there and hope the doctor would somehow see everything there was to see.  I also wanted an education - I knew some of my theories were wrong, but I didn't know why.  And, I need to know. 

So, why did I feel so lame giving the information I had and asking questions?  Why, after not getting what I needed from Doctor One and almost missing the boat with Doctor Three, did I have the impression the information I had to offer was not appropriate for discussion?  Why have I felt like I was over-dramatizing my condition to friends and family asking after my welfare? Why did I feel like I needed to dumb it down? 

I remember so distinctly hearing my sister's voice become more and more thready as she went through weeks of mis-diagnosis before someone finally, finally did a chest x-ray and found she had lung cancer.  I remember hearing how beaten she was after someone at an ER told her "this place is for life and death illnesses" and was sent home with "the flu."  I remember that from her sickened state, she had few words to describe the symptoms she had and how serious she could feel they were to her mortality.  I remember the doctor who hospitalized her one day, not because of the description my sister gave, but because when she got up from a chair to get on the exam table, she was unable to lift herself and walk without assistance.   

She didn't cry or wail, either. 

I remember with you, Izz, that you were breach in my tummy and that I didn't want the doctors to try to turn you.  You had been lying hammock-style in my belly for the last three months of the pregnancy and it seemed clear to me there was some reason for that.  The fact is, it could've gone either way, but in the end, when they delivered you via c-section, the doctor immediately saw that you were stuck in that position, and she told me there was no way they could've turned you - meaning, without hurting you. 

My girls, I hope to give you many gifts - I won't lie.  I won't say this is the most important thing you need to know because we haven't even started talking about sex, drugs, and alcohol, and I have lots to say about those things and how they affect your life.  But, please take this one seriously - you must advocate for your own health, and surround yourself with the support so you can do that. 

I hope I can be there when the time comes, but if it's not me, ask Dad, a friend, a trusted teacher, or a family member to help you.  Talk through what's happening to you so you have some practice at telling the story.  Research what you can and take notes.  Always command the discussion with your physician - set the agenda and be sure you get everything discussed.  Be curious.  Ask questions.  Trust your instincts.  But, also be ready to accept change when the facts belie your theories.  Don't stick to a solution that doesn't make sense if you have no facts to back it up. 

One thing I've learned over the years is that being emotional in a doctor's office is almost never productive.  I hate to tell you that, because when you are sick or have problems with your body, it can be scary.  Lean on me for emotional support and I will help you manage any stress you have before you go to the doctor.   

Above all, know that it is your right to know what is happening to you and why.  It's your right to ask what the treatment options are and to make the best decision you can based upon the facts and your own instincts.   It is your right and responsibility to give all pertinent information.  It is also always, always, better to know what's happening to your body than to hide from it.  Most of the time, I promise, you will come out healthy.  Those times you don't, the earlier you catch a problem and get it checked, the better. 

Despite feeling odd about discussing what happened to me today with my doctor, I did get my questions answered and I said everything I wanted to say.  I endured a few moments of embarrassment at my own ignorance, and that's OK.  I came out with what I need, for now, and maybe because of the information I shared today and the requests I made, I will get some answers, and be better off for them.

My deepest love for you both, 

Mommy

 

Drugs, Children, and Bad Reporting

by Lorie Fuller

There was a story reported across the country this week regarding the practice of drugging children to calm them for traveling.  The news reported that a study performed by Dr. Shan Yin says that drugging children with cough syrup or Benadryl to calm them for travel is child abuse. 

Did you read the study ?  I did. 

The reason I read the study was that it seemed far-fetched to me to believe that a scientist would specifically study the practice of giving a kid Benadryl to travel.  How much data could actually be gathered on the subject and how was it managed?  Did someone stand at airport gates and survey families as they got on an airplane to find out if they drugged their kids to calm them down for the flight? 

The news also reported that of 14,000 cases studied, 14% resulted in "major consequences including death."  Really?  

The news folks even went out to get some expert opinions about what you should do with a child just before traveling, instead of drugging her.  

As with many studies reported in the news today, the true reason for the study, the actual numbers involved, and the derived conclusions were mis-reported.  In short, the study covered all sorts of drugs, cases of drugging that had nothing to do with traveling, and cases involving severe forms of child abuse.  The data came from reports to poison control centers across the US. 

I'm not trying to defend the practice of giving children drugs without cause.  As parents, we need to be particularly careful administering drugs to our children to prevent harm and to demonstrate how serious it is to give medicine to a child. 

What I am trying to say here is that the issue of media reporting study results incorrectly has become comical. Every time I hear those words on the news, my eyes roll back in my head.  It's as though the reporters don't ever think to actually go out and read the study to find out what it's really about. If a study is really worth reporting in the news, wouldn't a reporter want more than the typical 90 seconds to cover the facts? 

It took me about ten minutes to find the study on the Internet and read through it.  I'm not a scientist, but I could see in those ten minutes that the study really wasn't about drugging children for travel, nor did it conclude that the practice is child abuse.  

As for the practice of getting expert interviews to educate us based upon the mis-reporting of the facts, let me just say to the news folks - it doesn't add credibility to your report to give us information on how to fix something that doesn't exist in the study to begin with.  In addition, reporting cases of severe health consequences is irrelevant if the subject of your report has nothing to do with the facts of the study.

So, how many times did I link the study in this post?  Eight more times than the report I read on the news.  Get the point?