Friday, August 13, 2010

Taking care of yourself: Step 1 - finding the motivation

My mom, bless her heart, isn’t behaving very well. She’s breaking every Despite Lupus rule out there, and her daughter isn’t happy about it!

She’s recently been undergoing tests for tummy trouble (could be her stomach, liver, or pancreas), and her primary doctor has referred her to a Gastroenterologist. Unfortunately, as is often the case, she’s not able to get into the GI specialist for another month and ½, which will be almost 2 months from the time her doctor made the referral. Now to give her a little credit before I give her a real lashing, she did spend a good amount of time on the phone with the GI receptionist making the appointment, having to fight tooth and nail to be seen at the beginning of the month of September, rather than at the end. That said, however, she’d promised me before she called to make the appointment, that if she had any trouble getting in, she was going to call her doctor back and ask if they could pull some strings to help her get in earlier.

So did that happen? Nope. Has she been experiencing symptoms in the meantime? Yup. Has she been feeling worse and worse as the days progress? Pretty much. Does she have any intention of making a stink to ensure that she gets the treatment (and attention) she deserves? Not at present.

But, of course, if her daughter has anything to say about it, she’ll be singing a different tune within the week.

Now don’t get me wrong. I know how difficult it is to fight the good fight when you’re ailing. When you’re sick and tired, and struggling to put one foot in front of the other due to lack of energy, lack of sleep, or both – it’s practically impossible to put up your dukes and stand up for yourself. But that’s exactly what you must do, particularly when you’re feeling crummy.

I think finding the motivation and drive to get the medical treatment you deserve is just about the hardest thing out there. You don’t feel well, you’re probably feeling a little downtrodden about life in general, and you may even be a little scared of what the doctor might say. So the last thing you want to do is to think clearly and critically in order to state your case in front of someone whom you already feel doesn't have time or won't make time for little ole' you.

But that’s exactly the point. You ARE important. You DO matter. And no one but you is going to make that apparent to the doctor. I can guarantee you – my mom’s primary doctor isn’t losing any sleep over my mom’s symptoms right now, and that GI specialist doesn’t even know her name. And the only person who can change that? My mom.

She’s got to get on the horn, assert herself, and confirm the following:
1) The doctor is okay with (and was expecting) that the specialist’s appointment would be almost two months away
2) If she wasn't, is there another doctor she'd like to refer her to?
3) Do the symptoms she’s been experiencing since her appointment necessitate immediate attention?
4) Might there be a medication change needed in the interim?
5) Does the doctor fully grasp the concept that my mom is experiencing considerable discomfort and fatigue, and that she’s doesn’t intend on tolerating it any longer than she has to?
Direct, upfront, and assertive, I know – but in my opinion, necessary.
***
So to those of you out there who are reluctant to follow up with your doctor, call in to the office nurse, or assert yourself with the receptionist in order to be seen…know that while you’re not alone, it is you alone who can improve the situation. To use a quote from my book, Despite Lupus:

"Assertiveness isn’t about brawn or brute force;
instead, it’s about diplomatically displaying a self-confidence
that cannot be ignored."

1 comment:

Katie G Rice said...

Very well put, Sara. I think all of us need a reminder when it comes to speaking up for ourselves. It really takes confidence and self-esteem to say, "I am worth your (the provider's) time. My well-being is of the utmost importance."
And that's not being selfish. It's being realistic, because you know that if you reach a dangerous level of health (life or death situation) you are going to wish you'd fought for your right to care a long time before that.
And Mom, please. Listen to your daughter. She knows what she's talking about. You'd want her to do the same, so be a good role model!