Recent Entries
Remembering the Caregiver’s Well-Being
What's the Patient's Name?
Growing Up with CHD, Into a Precious Piece of Art
A (Not So) Simple Question
Thankful for My First Hospitalization
Thanking Our CHD Doctors
Fussing Over Your Features
Health Above All
The Long and Lonely Miles
The Waiting Game
Search

Disclaimer

The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

Sep 19

Posted by: ACHA
9/19/2011 9:45 AM  RssIcon

By Alissa Butterfass

It was bound to happen. After writing in my last post that I always have so many ideas of what to write about for this blog, this time I was stuck. (I believe in the jinx—I should have known better!) Last weekend, I considered writing something about 9/11. Like Stephie, I was at the World Trade Center that day, but after reading her post, I wanted to come up with a new idea. Then I thought about writing about my (negative) attitude toward exercise, but Kelly beat me to it. Even a few hours ago, I wasn’t sure I’d meet my deadline.

But, as is always the case, something happened, not even related to my heart condition, and it sparked an idea.

My older son M. started kindergarten last week. While the school is not even 10 minutes away from our house, he is scheduled for pick-up at the bus stop at 7:30 a.m., a full hour before the school day officially begins. And, the bus stop is 0.2 miles and a good 7 minutes walk from our house. I know. I’ve timed it multiple times over the past two weeks. And that is in ideal conditions; I can only imagine when it’s raining or snowing.

So, despite my reluctance to become “that mom,” the one who makes a big deal out of everything (which I’m usually not, I promise), and despite my assumption that we’d just have to suck it up and deal, and fully expecting to get a “NO!” response, I called the transportation coordinator. I asked if it was possible to move M.’s bus stop to be closer to our house, even requesting the corner that is right across the street from us, viewable from my front stoop.

I couldn’t believe my ears when I heard her say, “Sure. I’ll look into it and let you know next week.”

And that’s when I remembered two important pieces of advice:
1. You never get something if you don’t ask.
2. Always be your own best advocate.

It’s true for kindergarten bus stops and it’s true for living with a heart condition (and for everything else in life, too).

Don’t be afraid to ask questions of your healthcare professionals, and even push them when necessary. They are the experts, of course, but you know your body. If something doesn’t seem right, advocate for yourself and insist they check it out.

If there are two potential courses of treatment and you have a preference, speak up and ask if that method could be effective in your case. Your doctor may not realize you have a strong opinion. It doesn’t mean he or she always will agree to that treatment, but at least it will open the conversation to discuss the reasons you have certain preferences and if they can be met.

Is your condition affecting your effectiveness at the workplace? Think of a solution and then ask if it can be implemented. That’s how I got my first four-day workweek. I asked. I explained why and how I thought I could do the job effectively on a reduced schedule. And I got it. Granted, since then I’ve asked for flexible arrangement when seeking other positions and was refused—but I certainly wouldn’t get any special schedules without asking, so no harm, no foul.

I could go on and on and on. But the point is this:

No one is looking out for you as much as you are looking out for yourself. And no one can guess your wants or needs, if you don’t express them directly. When it comes to your health, don’t be afraid to speak up. To ask. To explain. To advocate.

And don’t be afraid to speak up when it comes to 7:30 a.m. walks to the bus stop either.

* * * * *

Question for you all:
Please share stories about times when you’ve really benefited by advocating for yourself or by asking for something you might have initially been reluctant to ask. And share any tips for those who might be shy about speaking up for themselves.

Alissa Butterfass was born with transposition of the great vessel, which was corrected with a Mustard procedure at age 2. In addition to being a mom, wife, daughter, sister, friend, wannabe author and chocoholic, she works part time as a senior marketing manager at a Fortune 500 company and volunteers as the Co-President of her local chapter of a nonprofit organization.

Categories:
Location: Blogs Parent Separator ACHA Blog

1 comment(s) so far...


Gravatar

Re: Advice for Bus Stops, Heart Conditions, and Everything Else in Life

Very interesting Allison Butterfass, I would like say some things about advocating... it's something that I avoided like the plague. I didn't want to stand up for myself, because it was just easier to go with the flow and not cause any waves... I didn't like getting wet anyway... I was born in 1958 with TOF. By 1965 I had already had two surgeries... very stressful time for my young parents to face by themselves in Rochester MN at the Mayo Clinic. At that time young children had a very bleak outcome for survival. I was one of the fortunate after 72 hours I was still holding my own. I did do very well, no more blueness... I looked normal, but actually very far removed from that ideal. I did make some remarkable strides in my health and well-being.
And, again in a few years down the road.. I experienced my second surgery.... Open heart, and you know the funny thing is I don't remember to much of the events That gave me a new lease on life. Well, all was fine for many years, then the perverbial bottom dropped out. I look back and can pinpoint the beginning of the whole process of feeling weak, losing control, fatique, weight gain, weight loss, and overall separation from reality.... I had good job, ones that I really worked hard, considering what was ailing me. Finally in August of this year, I took matters into my own hands. With Gods help, I decided to go through with the surgery one more time, in hopes it would begin to change the weight. I had topped at 291lbs. I can say that I am the happiest I've ever been. I feel fabulous, but it did come with a price. My wife and I had never argued much, like I said earlier, before the surgery. Now we were finding ourselves locked in some turmoil of biblical proportion, at least to us, since could count on one hand the number of spats we had. To keep with the theme of this blog, I must add, there are no more bus stops for me. The children are all grown up and healthy. The everything else is simple. It's what you put into it that counts... that means the most. Good in produces good out. I'm an optimist always was, always will be.

By Paul Kreisle on   9/19/2011 3:32 PM

Your name:
Gravatar Preview
Your email:
(Optional) Email used only to show Gravatar.
Your website:
Title:
Comment:
Security Code
CAPTCHA image
Enter the code shown above in the box below
Add Comment   Cancel