Saturday, April 30, 2016

This Week in my Life: Week 17 of 2016

Whew, it feels like it's only been a few days since I posted for last week. I guess that's what a short trip packed with fun and MS fatigue and exhausting recovery does! In addition to the incredible fatigue issues, I've also had some other stellar MS experiences this week. Bladder problems are always fun, aren't they? It seems mostly better now (not 100%, but around 80% at least), but a few days before the trip, all during the trip, and a few days after the trip I had some major problems with fully emptying my bladder. To put it differently (in the MS-world parlance), I had some major frequency issues. To put it even more clearly, I had to pee ALL OF THE TIME. I'd go to the bathroom and pretty much immediately feel like I needed to go again. This certainly wasn't a new symptom for me.  It was a major part of that terrible first year of constant relapse, and it has visited now and again ever since, but it definitely hasn't been this bad in a very long time. A 6-hour drive is lots of fun when you have to pee all the time. Luckily my driving buddy (my mom) also needed to stop more frequently than usual because her post-surgery knee/leg didn't like being in a car that long either. Enough about pee, let's move on to the pictures and things.

The view from here: 

The trip to hang out with my niece on her birthday weekend was a blast. Way too short, as always, but it's always so soul-enriching to spend time with this awesome girl.

There were a lot of selfies this weekend.

She's the best.

Just two ladies casually strolling through the local outlet mall.
We didn't shop at either the gold toe sock place or the motherhood store.
We did, however, shop at some of her favorite stores, Justice and Claires.
These would so not have been my favorite stores at her age.
But as an aunt, I'm enjoying living all the girly things through her.

Another example of girly things: dolls.
Hanging with Izzy as she enjoys a cookie and some water.

More girly things - my SIL painted my nails. (Toes only, I don't do painted fingernails.)
Coral topped with sparkly silver, natch.

Went to Sonic. I got out of the car to photograph a tree, which gave me the opportunity
to grab this photo. (Or about 15 variations on this photo, if I'm being honest.)
The Sonic tree.

Kylie made a special little snack to tide us over until dinner time.
She's the coolest.
We were there a few days before her first piano recital, so we got a private preview.
She rocked it.

She also jammed out quite a bit on my horn. #heartmelted
Girl's got some fabulous natural brass-playing chops.

Phew, didn't miss the flowering of the bush.
Apparently there was no sunshine while we were gone.
So it's progressed a little bit, but still no full-on flower explosion.
Sorry this picture isn't super clear. Impossible with how windy it was.

What I read this week:

Other than quite a bit of one of the Dork Diaries books with Kylie, not a whole lot of reading of books this week.

But I am digging a new-to-me MS blog: Tripping on Air. She recently expressed some of what I was talking about recently in my complicated feelings about all the marketing for the MS drugs:
"There is considerable controversy about how this disease is portrayed in the media, and in drug company ads. The overwhelming majority of what we see are glossy images of young and healthy people doing athletic things, smiling and happy. The kinds of pictures that entice us to try new medications. They’re the pictures of what we all hope to be. They serve to soothe and comfort the public that the number one neurological disease affecting young people worldwide is manageableThey promise good health with a simple pill. These images are well received by many patients for whom this ideal is even remotely possible and can be especially comforting to the newly diagnosed who are looking to see what their lives might come to look like...
...At the other end of the controversy are those that are angry at the current 'normal life' depiction of MS. Who feel outraged that the dancing, rock climbing, happy ice cream eaters are not a true representation of what MS actually looks like. After 15 years of MS, I get this too. I know it’s tragically laughable to promise yourself you will never become so disabled as to need assistance walking and yet I still hear others make this promise to themselves all the time. I also know how hurtful and utterly douchey it is to say this out loud. For clearly the implication is there are those who simply didn’t try hard enough to keep from progressing. I understand why MS’ers are pissed to see this Pollyanna presentation of the disease that looks like a lie for so many and that leaves their experience with it completely ignored and invalidated."
There is plenty more to this post and the whole thing is worth a read. As is the rest of her blog. I especially enjoyed these posts: Honey, I Peed the Bed, Thanks, MS, People Who Mean Well (and Their Miracle Cures, and But You Look So Good! She's a good writer, she's funny, and she's relatable (spell check says that's not a word, really? that's a word, right? well even if it's not, you know what I mean). If that's your thing, check her out. Heads up, though, she does swear sometimes if that's an issue for you.

1 comment:

Garrett said...

I'm glad you were able to take a trip here!