Saturday, July 10, 2010

Quote It Saturday 7/10

It's been a very long time since I posted a Quote It Saturday, partly because I've been too busy to blog on the weekends and partly because I've been too busy to write down quotes as I read lately!  I actually have tons of things to do today, too, but I wanted to share this with you.

Today's quote isn't from a book; it's something that Jamie's pediatrician said to me on the phone yesterday that really touched me.  I called her to fill her in on what's going on with his Lyme and co-infections.  I've mentioned many times here how blessed we are to have this wonderful doctor as our boys' pediatrician - she's compassionate, intelligent, and always willing to learn something new (a rare trait in doctors, I've found).  She talked with me for about 20 minutes, asking all kinds of questions about what tests the Lyme doctor ran, how the results turned out, and how he plans to approach treatment.  When I told her he thought the lines on Jamie's back were definitely from bartonella, she sighed in frustration.  "I've seen those same lines on the backs of a half dozen teen boys this summer," she said, "but these are healthy kids with no other symptoms!"  She's understandably frustrated by the uncertainties inherent in diagnosing Lyme and co-infections.  Finally, at the end of our conversation, she said to me:

I want you to know that it's because of your intelligence and all your hard work in researching this stuff that you and your family are doing as well as you are with such serious illnesses.  You're doing a great job.

Tears came to my eyes.  All these years (she's been the boys' doctor since they were born), I wondered if she was just patiently putting up with me but thinking I was a pest, constantly bringing her new information and questioning everything.  Her words really touched me deeply and made all the time, effort, and stress of the past few months (years?) seem worth it.

In addition, she asked me to write a very brief summary of why we suspected Lyme and bartonella in Jamie and how the tests turned out so that she can pass that information onto the pediatric doctors who are supposed to be our local Lyme experts.  When she talked to each of them about Jamie's case a couple months ago, they'd never heard of the pain in the soles of feet that Jamie was having - but our Lyme doctor says it's a very common Lyme symptom.  That's just how she is - constantly trying to improve her own knowledge and that of other doctors.

As for Jamie, he's pretty wiped out today, but I'm not sure it's a reaction to the Lyme medication yet.  He and Craig have been running wild all week - sleepovers, swimming, games, and, for the last two nights, flashlight tag until 10 pm!!  I love to see them having so much fun and acting like normal kids.

Hope you're all enjoying the weekend!


Toni said...

It must have been wonderful to hear that from the pediatrician, Sue. I would only add that a lot of us who follow your blog feel the same way -- that it's through your research and hard work that we've learned about new treatments and warning signs for diseases like Lyme.

Anonymous said...

I agree! Your research and blogging have benefited a lot of people!

Glad that your family has such good care!


Pamela said...

yay for your advocacy. I think it'll not only help your family, but many, many others too. I hope Jamie feels better soon.

Dominique said...

She's right. I saw first hand how great of a mom you are! You have wonderful boys and you are an incredible mom! I'm glad your doctor was kind enough to tell you.

Illness is always hard because we often wonder if we are believed, being a pain, or are just too absorbed in finding out the truth and the details.

San said...

It must be so good to hear that! I know in Belgium most doctors don't appreciate it if you do your own research. And soon after they call you a hypochondriac!
Thank you so much for sharing this! It gives me hope that there actually people out there willing to learn and really capable of doing there job.
Take care!

parentingadabsurdum said...

Great words - and thanks so much for sharing your research and hard work with us!

Dusty Bogwrangler said...

Just echoing what others have said, I rely on your incisive mind to digest all the news for me.

Perhaps you can take your advocacy a step further and write a book?

I like the sound of torchlight tag. I missed out on that one :-(

Sue Jackson said...

Thanks for all the wonderful comments and support! I really was not fishing for compliments when I posted this - I just wanted to share what an amazing doctor we are blessed with. They do exist!

Jo - The boys LOVE flashlight tag! And writing a book has been one of my goals for over 5 years. So far, all I have is a summary and an outline. [sigh] How do I find the time? I am very impressed and inspired by others with CFS who have done this (I'm talking about you, Pris and Toni!)


Never That Easy said...

What an amazing validation of all your hard work ~ definitely worth a Quote It. Have a great week!

Sherry said...

We all need to tell others this so much more than we do.