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.

Thursday, April 21, 2016

This Week in my Life: Week 16 of 2016

I'm a little early this week, as I'm headed to Omaha to see my very favorite person turn 10 this weekend! (How is she already in the double digits?!) The weekend will go by too quickly and will probably be tiring, I know, but it will be tons of fun. Can't wait to hang with my niece. We haven't seen each other in person (but have had lots of Skype time) since Thanksgiving, which is way too long for both of us.

The view from here:

Star Wars at the symphony's school concert for 4th graders - the perfect way to inspire future horn players!

The only symphony concert of the year where the majority
of the audience does the wave before the show starts!

Pretty bush by the house. Missed the majority of its in-bloom time last year,
and afraid it will happen again this year when I'm gone this weekend!
Hold on, wait for me, pretty please!!!

Wish it had a longer season. A few days of amazingness and a year of meh.
What I read this week:

My awesome niece Kylie at her 5th birthday celebration 5 years ago.

Saturday, April 16, 2016

This Week in my Life: Week 15 of 2016

The view from here:

Big news this week is that I was finally able to start back on Tysabri. This drug was everything I'd hoped for the last time around and gave me 7 years with very little disease activity and no relapses. Since then (over a year later, 2 drugs with plenty of side effects, and at least 1 serious relapse and LOTS of extra MS symptoms on the regular), I was desperate to go back to the drug I know works for me. The risks are scary, yes, but for me it is so worth it.

Of the 3 locations I've had infusions, this new situation is by far my least favorite. It's a very busy cancer center with tons of patients and not the greatest setup. My previous infusion locations had much more private and quieter spots to be infused. But the nurse was great, and I can't really complain overall.
First impression - given one of these flashing & vibrating contraptions while waiting
like you get at restaurants. Haven't seen that in healthcare before!
Mine didn't work, though,so they had to call out my name the old-fashioned way.

Tons of dreamcatcher thingies in the lobby, which looked kind of cool.

Hooray, being infused!

As usual, they wanted to go in my hand, but I HATE in-the-hand, so
referred the nurse to my arm instead. Nurses at cancer centers tend to be good
with the needle, so I didn't really feel it at all.

A weird little tv on an arm that swivels around helped the time go by.
I always used to get my HGTV fix while getting infused.

The best part of Tysabri (other than, you know, a drug that works and works well) is what I like to call the Tysabri Treat. It's a nice little excuse to treat yourself to something post-infusion. Getting a 2-hour infusion isn't necessarily fun, and it kind of reminds you that you're sick - and somewhat seriously so - in a way that you don't necessarily think about when you're swallowing a pill. So, a little treat afterwards can boost one's spirits. Faves for my TT in the past have been Thai food and/or ice cream. Went with Thai this time, and it was the right choice. So tasty.

Thai Iced Tea with a little rose straw wrapper thingie.

Rose close-up.
We asked the server afterwards how she makes them, and she showed us. 

Spring roll, black pepper garlic with fried tofu, and pad cashew with fried tofu.
(My mom and I always order both of these entrees at this particular spot and split them.)
Haven't stopped thinking about this meal since Thursday! So good.

The scheduler at the cancer center puts fun stickers on the schedule
papers they give you with your next appointments. Nice touch!

Ironically, after coming home from my infusion, I had the welcome and what-to-know-before-your-infusion packet from Biogen. Having already been on the drug for 7 years in the past, I didn't need any of this info, but still found it ironic to get this too late.

I have a lot of thoughts on all the MS drugs and their marketing campaigns. (Love some, HATE some.)  I see that Tysabri has a new campaign since I was last on the drug, focusing on the idea of fighting. I'm ambivalent about the use of fighting when talking about diseases. I get it, certainly, but I also find it problematic. I may write a post about all of the different marketing campaigns at some point, just because I have a lot of strong opinions.

The whole welcome packet thingie was excessively packaged. An envelope, containing a folder, containing the welcome booklet, all of which was inside a much too large bubbled mailer. BUT, I could rhapsodize about the booklet for hours. Not the content, or the imagery, or any of that, but the TEXTURE of the paper! I could just touch that thing for hours. It's hard to describe the texture, exactly, but it feels unlike any kind of paper I've felt before. Very smooth, in a delightfully pleasant way, but not glossy. Well done, Biogen. 

What I made this week:

Hundreds of origami elephants, as per usual, but also some cat earrings for a custom order. I'm not a fan of cats, but I know plenty of folks are, so I'll probably add some cat items to my Etsy shop soon.


What I read this week:

Why Not Me? by Mindy Kaling. Like her last book, I didn't find it all that funny overall, but it had a few moments, and it was a decent mindless, qausi-entertaining read. How's that for an endorsement?

Finally finished Divergent. I started this ages ago, but didn't get into it right away, in large part due to the fact that it was an e-book I had to read on my computer (I had gotten some kind of free e-book offer thing) and I don't really enjoy reading e-books. Reading them on an e-reader is a little better, but reading on a computer or a phone is not enjoyable, in my opinion. Ultimately, I'm a physical book girl, all the way. But, I like this one and plan to reserve the next in the series at the library right away.

Speaking of books, Happy National Library week!
These socks were a gift from my friend Heather, who you'll read a guest post from SOMEDAY.

Now, if you'll excuse me, I'm just going to go meditatively rub my Tysabri booklet! 

Saturday, April 9, 2016

This Week in my Life: Week 14 of 2016

The view from here:

Got a sweet package from my friend Gwen this week.
It sure gave me a Riesen to smile! ;-)

a tasty mixed berry shortcake


Overall, this week was meh - still not feeling great overall. Still waiting on one last insurance-related hurdle before I can start Tysabri again. Also, another not so great week on the reading front...

What I read this week:

Furiously Happy: A Funny Book About Horrible Things Of note on the MS-front is that a few pages of this book are devoted to the spoon theory. The book is mostly about the author's experiences with a handful of mental illnesses, but she also has RA, and discusses the spoon theory and how it relates to both her RA and depression. There is some good discussion of the whole spoon thing (If you do x & y, even when x & y are basic kinds of things like showering and getting dressed, there's no way you can do z, and so on) and how we all too often are overly self-critical of our inability to do z. Yup.

Saturday, April 2, 2016

This Week in My Life: Week 13 of 2016

The view from here:

We had a few very nice days this week, so I got some vitamin D and enjoyed a book outside.
I like this shot, as it looks like I have a personal, natural lamp to read by.

While reading, I heard what I thought was a very large squirrel behind me.
Turns out it was a cat just casually walking along the fence!

Won't be able to see the lake at all in a few months when the leaves grow.
I enjoy seeing it peek through the trees this time of year.

I moss admit that it's nice to take time to notice all the small, beautiful things around us.

Last week I shared a picture of an avocado with a tiny pit.
This week - the major bummer of an avocado with a jumbo pit.

A pretty great sunset.

What I read this week: 

Finished Inside the O'Briens. Loved it, as I have all of Lisa Genova's books. Like her other books, this was a major tearjerker. Huntington's disease is awful. I hope she writes a book about MS at some point.

Read an unpublished novella by an acquaintance (a friend of a friend who I went to a dinner party with once) called TA-50 and X, Y, Z. A Vietnam war story. It was funny. Reading this reminded of some other favorite Vietnam war books I'd like to reread at some point - The Things They Carried and Matterhorn.

Also read A Good Killing, a decent mystery set mostly in my beloved Michigan.

On the MS front:

Nothing new to report, really. Still lots of extra paresthesias going on. Still noticing a wee bit of residual weakness in the left arm. Got a letter saying I can make my appointment for my first (more like 100th, really) infusion. Didn't open until too late in the day yesterday, so I'll have to wait until Monday to call.

Got my latest JC test result back - I'm still negative. *Huge sigh of relief* especially because I misread the report at first and thought it said I was positive. Immediately starting crying. Told my mom and she started crying. Then I realized my mistake and it was like PHEW.