Friday, August 1, 2014

Lupus treatment: Being open to change


My daughter Deirdre is five going on 15. She is a precocious little lady - and makes me earn my parenting badge on a weekly basis.

Of course, I love her dearly, and appreciate the challenge of staying one (or three) steps ahead of her. Though, some weeks, it's not easy.

Recently, I've found the need to switch up my parenting tactics all too frequently. Whether it's reminding her to be kind, empowering her to make good decisions (particularly before she makes a bad one), or helping her work through her frustration, I found my strategies one week aren't necessarily going to work the next. I remember this being the case when she was in her two's and three's, too - although today, there's a lot more sassiness to deal with. (Where DOES that come from?)

The good news is that despite the continuous need to tweak my tactics, I can see progress being made. As opposed to her three-year-old self, I can see how the strategies from one week build to the next. If, in week one, she screams, yells, and stomps off because she's been asked to do "X", the following week, she employs the response tactics she learned the previous week ("think before you react, take a deep breath"), and there's no screaming or yelling - just a little stomping. In place, even. It's not perfect, of course, but it is progress. And don't all parents love progress?

As I continue to craft new ways to help Deirdre help herself, I'm reminded that the way I treat my disease might have to change over time, too. As evidenced by my Fall 2013/Winter 2014 flare, the old stand-by of increasing my prednisone isn't always going to work - and I need to be a little quicker to accept that fact. My doctor even suggested that we switch tactics after a few months, but I was a hold-out. Increasing my dose of steroids had worked early on in the flare - shouldn't it just work again? Shouldn't we just keep trying? Can't we just make it work?

Of course, I finally came around, realizing that my treatment DID need to change, and I'm happy and healthy now that Cellcept has been added to my medication regimen. (My pillfold was happy to have a newbie in the group, too!)

You can read about my desire to stick with prednisone here. While I know it was an important part of my journey, I'd like to think that I'll capitulate a wee bit earlier next time and start the stronger medication sooner. I know that my winter could have been a heck of a lot less painful had I done so.

So just as Deirdre will continue to build on her interpersonal skills, I will continue to hone my treatment-discerning skills. I welcome the chance to work side by side this cutie pie.  Wouldn't you?

3 comments:

  1. Personally, I find Deirdre to be perfect!!!

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    1. Spoken like a true grandmother! She IS pretty great, isn't she? :)

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  2. She's adorable! Why do things have to change for Deirdre, you, or me? I've been asking the FDA for a year now, why did they have to change my medicine that worked? Really, I've thought it for years as they took things off the market. But lately I'm holding some irritation longer than I should, mainly because finally, the perfect combinations fell into place. I haven't technically written a letter to the FDA. What good would that do? During the holidays last winter, I went on prednisone practically handing out business cards to family saying please ignore my demeanor if I am unpleasant to you. Steroid warning alert! Steroids are gone now, in a way. I'm still using a nebulizer treatment almost once a day. That's not over the threshold for me so far, but it is also new this summer. Let's congratulate ourselves, Sara & Deirdre, too! We know how to make life interesting! At least Deirdre & Lupus do!

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