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Sep 07

In Pain We Trust: Mom’s Intuition Trumps All

In Pain We Trust In Pain We Trust: Moms Intuition Trumps All

A Conversation Between Mother and Son on the Journey From Sickness to Health

Being that our kids are back in school, I thought it might be a good time for the rest of us to catch up on some reading. If you’re like me, you have a book wish list that would choke a Kindle. So you’re probably not looking for anything new to add to your reading repertoire. But I’m going to tell you about a fantastic book anyway, that I believe every parent should read. It’s called In Pain We Trust, written by my dear friend and fellow parent, Vicki Whiting and her (now 18-year-old) son, Kevin Whiting.

Even though I’m known for my sense of humor, I’ll confess that In Pain We Trust is not a funny book. However, it is an important book on family health care advocacy that has some poignant, light moments (scattered amongst the drama) that make you smile in spite of what happens.

Nominated for an International Book Award, In Pain We Trust is a mother’s battle to save her son from a little-known, life-threatening disease than no one, not even so-called medical experts, could diagnose properly. However, they could (and did) misdiagnose it all over the place.

When Vicki’s son, Kevin, was 13 he started having extreme stomach pain, accompanied by vomiting, fatigue, and severe weight loss. It was like he had the flu, but ongoing and getting worse. If Kevin kept losing weight at this rate, he would die. Doctors told Vickie that Kevin had everything from bulimia to ulcers. But all the treatments they tried were unsuccessful, and as a result Kevin’s weight continued to melt away like butter in a hot pan.

The fire that fueled In Pain We Trust

Fed up with how doctors were failing her son, Vickie shifted into fighting mama mode and ferociously took on an equally failing health care system. Refusing to accept “I don’t know” as an answer Vickie and Kevin (and the rest of their family) embarked upon a journey that pitted them against bureaucratic insurance companies, hospitals, and doctors; all the elements that are supposed to be on your side in times of a medical emergency.

VickiandKevin 300x200 In Pain We Trust: Moms Intuition Trumps All

Vicki and Kevin today

This is a tale of health care advocacy that should not be missed, especially if you’re a parent. The good news is you have way more power than you think when it comes to being an active participant in your family’s health care. The bad news is sometimes you have to claw your way through the rubble of a family crisis to find it.

Or you could just read In Pain We Trust.

And not to worry, at the end of this bumpy ride, Kevin emerges victorious. I’m not giving anything away by telling you this because In Pain We Trust is a memoir written in first person by both Vickie and Kevin. So you know from the beginning that Kevin finally gets the proper health care he needs. It’s the journey that matters in this story. The beginning and end are merely bookends that keep everything grounded in reality, even in the face of a parent’s frustration.

Because there’s nothing worse than watching your kid suffer and feeling like there’s nothing you can do about it. In this case, Vicki metaphorically became one of those moms who lifted a car off her son…because it came to a point where she had no other choice but to do so.

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Stacy Dymalski is a stand-up comic who gave up the glamorous life of coach travel, smokey comedy clubs, and heckling drunks for the glamourous life of raising kids (who happen to be bigger hecklers than the drunks). This blog is her new stage.

For more of Stacy’s comedy check out her hilarious book Confessions of a Band Geek Mom available in paperback and on Kindle on Amazon.com.

6 comments

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  1. Phillip

    This is a very important thing to do. Get those whom you might need to pull strings for and make medical decisions for AND get them to sign a simple note saying the doctor can tell you confidential information. My wife had double pneumonia and blood sepsis (infection) and the Doctors had to break the law to keep me on the edge of the loop. Instead of telling me what the problems were, the Emergency Doctor said “I don’t know what you have planned for tonight, but you had better stay here ALL NIGHT. I could tell he wasn’t just talking to hear himself. Five days in intensive care and I had to pick up the information a piece at a time. They did give up some information when they needed me to get my wife to cough up a sample “since you are the only one who might be able to do it”. Otherwise it would be a tube into the lungs. I did it. I told her the truth. Fear gets results, but it ruins brains.

    YOU HAVE TO HAVE THE PERMISSION NOTE. You can’t get it from an impaired person.

    Sincerely, Phillip

    1. Stacy Dymalski

      Wow. Thanks, Phillip, for sharing your story. I’ve heard similar situations like that before, when it involves friends or even siblings and/or parents, but I didn’t know that was also the case with spouses. I’ve heard that having an official power of attorney that designates someone who can make decisions for you when you can’t, is a good idea. Which is like the note you recommend.

      I think it’s unfortunate that our health care system has become adversarial to the patient and the patient’s family. Now getting sick or injured isn’t scary just because you’re sick or injured. It’s also scary because you may not be able to get the care you need, even if it exists.

  2. Dee Macaluso

    I’ve been a patient advocate for two dear friends, sitting by them night and day in the hospital while they were gravely sick, writing down info and instructions, asking and answering questions, feeding, helping them to the bathroom. Things they could never have done on their own and the hospital staff aren’t there to do. I actually went to fetch meds for my friend at the nurses station and stood by while they picked a dosage number from air because they couldn’t read the Dr.’s writing. Anyone seriously ill needs an advocate. Good for Vicki for fighting the good fight. Glad it all worked out.

    1. Stacy Dymalski

      I agree with you, Dee. Anyone who goes into the hospital for any reason needs an advocate. (Good for you for being one, not once but twice.) I also think it’s a good idea to take someone with you on follow-up doctor visits, just so you can be sure you heard what you thought the doctor said. A second pair of ears always helps.

      As I said to Phillip in my comment above, I think it’s a sad state of affairs that when you embark upon a journey within our health care system, you have to go into it on the offense. You can’t assume you’ll be told everything you need to know, when you need to hear it. Or that you’ll get the proper care you need, even if you pay for it. Vicki and Kevin’s story really drive that point home. Unfortunately, I think their experience is more common than not.

  3. Vicki Whiting

    Thanks, Stacy, and Phillip and Dee. Such an important issue. It is good that there are advocates like you out there making things better for patients. It’s good that Kevin and I are able to be part of a solution so that (as Kevin said at 15-years-old) “No one else has to go through what I did.” Oh, that a teenager’s dream could come true. All the best, Vicki

  4. Stacy Dymalski

    Our pleasure, Vicki. And thanks for writing such an important book. I’m happy to have some small part in helping you get the word out. Every little bit of valuable information helps when you’re in a situation like that.

    Best of luck to you and Kevin. Whom I know just headed of to college! A quick side note to readers…Kevin wants to become a pediatrician. Hmm… I wonder how THAT came about? ;-)

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