Saturday, December 31, 2016

This Week in My Life: Week 52 of 2016!

Wow, the end is here. I made it through 52 straight weeks of consistent posts in this series. Should I continue? I know some of the people close to me IRL like these posts, but do the rest of you like them? I haven't decided yet if I want to continue this series. Right now, I think I'm leaning towards doing a monthly version of this where I share pictures and highlight what my month has been like. I'd also like to write more MS-y posts overall. The end of my Symptoms series is coming soon!

The view from here:

Christmas Day featured an ice storm turned blizzard. Glad we weren't on the road that day!

Sloth earrings I made!

Mother Nature reminding me that not all of 2016 was crappy.

I'm sorry, what now?!
We haven't even quite hit NY's much less Valentine's Day so this is ridiculous.
(The fact that they are only selling regular Cadbury Eggs and no Caramel ones makes this even worse.)

I hope you all have a lovely NYE. I'm going to a NYE wedding where I'll be performing some lovely music.

I do plan on doing a year-in-review type post and a the-year-ahead post. I suppose I should have done the former already, but you'll probably get them both at some point during the first week of the year.

Thank you all for reading The MS Muse this year. Thanks especially to those of you who have left comments! They make me happy, so please leave more. ;-) One comment to leave right now would be to let me know if you'd like me to continue this weekly post or if you like the idea of a monthly post plus more MS-specific posts.

See you in 2017!

Saturday, December 24, 2016

This Week in My Life: Week 51 of 2016

The view from here:

Gwen making me a fancy coffee drink.

A holiday vignette at Gwen's house, including an origami wreath I made for her.

Pretty frost on a bitterly cold day.
My family celebrated Christmas a few days early this year. We met at the home of my brother, SIL, and niece Kylie. The following images show our festivities as well as the scenes from the trip there and back home.

A gorgeous sunset welcomed us as we arrived to our Christmas destination. 

A private piano recital by my favorite pianist.


I'm so lucky my brother is handy since we had a major car problem arise on the drive.

S-I-L gave me a fancy gel manicure.

She's a makeup artist as well as a pianist.

These two are my faves.

Kylie made a calendar for her parents. This page is the best.

Watching my favorite Christmas movie with my favorite girl snuggled on my lap. Perfection.

Playing some Emoji Uno.

Family game night!
She did my makeup, too, in a more theatrical way with some face painting.

Our favorite game and a longstanding family Christmas tradition. So much laughter.

Hoarfrost is so pretty.

A brief bit of blue skies. Blue skies plus hoarfrost = heart eyes emoji.

Most of the drive back home looked like this.

It was an emoji Christmas! My family just gets me.
Time with this girl during the holiday season is the best gift of all.

Working on some major tangles.

A very merry Christmas to all of you who read this blog. Hope your holidays are filled with health, love, and laughter.

Saturday, December 17, 2016

This Week in My Life: Week 50 of 2016

The view from here:

Nutcracker rehearsals at my old college.
This practice room hallway always brings back the feels.

Late night garage window frost. It's been COLD and it's only getting colder.

Partial Christmas mantel display with some origami elephant magnets.
(Not a regular part of the display. I just took a staged photo of them before shipping them off.)

Every single night this week. Two performances today!

It was SO COLD at Noodles & Company! I had to wear gloves.


Staying with my friend Gwen this weekend. Watched the last few rounds of her poker game.
This cheat sheet did not help me understand the game. Ha!

She did not win this round.

Monday, December 12, 2016

Magazine Monday: Jamie-Lynn Sigler

Hey longtime readers, remember my little "Magazine Monday" series? Well, it's back, at least this once. In a recent issue of Health Magazine, there was an article about actress Jamie-Lynn Sigler, mostly about her having MS. I'm pretty clued into pop culture, but I had no idea who Sigler was before hearing about her having MS earlier this year. (I never watched The Sopranos, which I think is what she's mostly known for.) I'm somewhat cynical about how much "awareness" really matters or makes a difference (even though I mostly believe it does, and certainly wish I had been more aware of it before I was diagnosed) but every time a celebrity comes out about their diagnosis, I'm somewhat pleased that the disease is peeking into the national conversation at least for a few minutes.

Most of this article was ultimately a positive thing for MS awareness, I think. But one statement Sigler makes kind of alarms me:
There are so many options now - infusions, pills - that really help with the progression of the disease. When I finish this movie, I want to start a blog or YouTube channel where I can be a guinea pig. If I try things and they don't work or they help, I'd love to be able to share that information with people.

On the one hand, a celebrity with MS taking to the web to talk specifically about MS would be a great thing. We'd welcome her to the blogosphere or YouTube. But the idea of being a "guinea pig" and trying various treatments to "help" us is very troubling to me. I'm trying to give her the benefit of the doubt and just chalk it up to being a poor choice of words. If she is going to take to a blog or YouTube to talk about her specific experiences with MS and with trying different drugs (under the guidance of a doctor) and without trying to offer medical advice, that's great. But the way she puts it here doesn't sound like a good idea, for her or the people she thinks she'll be helping. After all, with MS especially, what works for one person with the disease very well might not help at all for another person. I do like reading about people's experiences with MS drugs, but I don't count one person's experience as the ultimate truth, nor should anyone else. And we already have "guinea pigs"  in the form of carefully controlled clinical trials. So go ahead and blog or vlog, Jamie-Lynn, but please please please don't be a "guinea pig" and don't think that we're looking for a celebrity to be our MS guru. We'll take you as a role model and beacon of hope and advocate, but not as a source of sound medical advice.

Saturday, December 10, 2016

This Week in My Life: Week 49 of 2016

The view from here:

11 pm pink sky


Christmas cactus blooms right on time!

Tysabri time. In the hand is the WORST (soooo much more painful) but pretty much every single nurse
wants to do it there. I usually say no hand but I just went with it this time. Never again.

more fun with Prisma app


Saturday, December 3, 2016

This Week in My Life: Week 48 of 2016

I remain pretty exhausted and it has been a busy (for me) week, but I did manage to finally get another symptom series post up. Two more to go!

The view from here:

Tis the season for lots of Christmas concerts and rehearsals!

Tis also the season to make itty bitty penguins.
I amuse myself by taking pictures of my horn. Lots of them.

Beautiful church venue for concert tomorrow.

I further my amusement by using fun photo filters.
I hate snow, but this one particular kind of snow is very pretty to see fall, and this kind of snow is also probably why there is such a thing as a slo-mo camera:

Amazing pics my bro SIL texted - niece making delicious Chrismas treats!

Can't wait to eat these in a few weeks!

A little update

Remember a few months ago when I went on a little rant about a letter I had received from MS One to One? Well, they just called me up to apologize. The excuse was a little lame (basically, that technology sucks...ignoring the fact that people design and maintain the technology) but I did appreciate the gesture and the overall friendly nature of the conversation. I hope their snafu with my case made them aware of what they needed to fix to prevent it from happening again.