Sunday, February 11, 2018

Plans & Ports

Hey there, patient readers. I know I've been MIA once again for a little stretch. I'm here today to give a quick update. I've hinted before about creating a new website for my MS blog and advocacy efforts. It will be called Life of Lesion and the launch date will be very, very soon. (Shout out to my mom for coming up with the awesome name.)

This new site will have much less of the personal pictures and stories that have been such a big part of the blog over the past few years (though there will still be a bit of that). I will be carrying over a lot of the quality content from this space from the past eight (!) years, though. It will focus more on things like the My MS Symptoms series. There will also be a few new series called Exposed Nerves and Lesion Learned, with a shout-out to my friend Heather for coming up with those names.

Until then, I just started Twitter and Instagram profiles for the MS side of my life. Please follow me there if you're so inclined. Should I start a Facebook page as well? I haven't decided yet... I know some people who are interested in my MS stuff aren't on the other social media platforms, so I might just do it. I'm planning to up my advocacy efforts this year in general and these social platforms will allow me to do this.

In the meantime, I'll share one piece of news. A few weeks ago, I got a port! The surgery was a minor one and recovery was pretty easy. I've had one Tysabri infusion so far with the port and I'm loving it! It's really nice no longer having to be stuck 5-6 times to get an IV started. It's definitely weird to have a hard foreign object under my skin, though. I have a hard time not continually touching it.

Last IV!


recovery
.
they gave me this little pillow to use with a seat belt


first Port infusion!

See you soon for the official launch. I'll announce it here and have a link to the new home for my MS musings. 

Saturday, December 9, 2017

This Month: October + November 2017

Yikes. It's been almost 2 months since I've posted here. Apologies to my loyal fans. ;-)

The Health Rundown:

Not too much to report. MS has been okay-ish. Just the usual things that pop up when I'm not getting enough rest. Still JC negative and last MRI was stable. Hooray! I did fall down the stairs and hurt my arm in October which was not good but all is better now.

Kidney stones are all gone! I still have a post related to that saga that's coming, featuring a very special song.

On the lady parts stuff, things are okay, I think? I started the menopause shots. At first things were normal but now I'm in hot flash city. A hot flash in the middle of a concert is super fun.


Where I've Been:

Where have I been? Just super busy. An above average number of gigs, for one thing. Opera, Symphony, special events, etc. This week is a little break in the clouds before Nutcracker next week. It's been great to have this much on my plate musically (including both extra challenging and extra fun stuff) but it's been tiring as well.

I've also been busy with other work. As is usual for me, I have dry spells in each of my many jobs and then they all crash in ALL AT ONCE with tons of things. I've been working too hard and not getting enough sleep. Which is my excuse for not visiting you here in MS Muse land.

One of those work things I've been up to is writing. Well, I'm always writing but it is usually ghostwriting so I can't share it as my own. But I have guest post status as a Patient Expert at WEGO Health. Here are a few things I've written, just so you can see that I can write professionally and not just in the laid back style you get here:
In October, my mom and I had a quick road trip to see my niece. I also unexpectedly got to see my friend Heather and we looked at pretty fall colors and played pool. In November, Thanksgiving was great. My niece (and Bro and SIL and pup) came for a few days and we had a blast, as always. Playing horn with my niece is pretty much one of the highlights of my entire life. It makes me so happy. Our favorite family tradition is decorating gingerbread houses.

The View From Here:

Once upon a time it was Fall here:












the difference 7 days can make



But then a very sad thing happened:





a little snow doesn't stop me from grilling!
(JK it totally does. this was an exception to the rule.)


More pretty stuff, mostly sunsets, obv:
















Fun times:

awesome candle from my sis. (we heart Kalamazoo!)

HUHOT WITH HEATHER = HAPPY KAYLA!

we are very successful pool sharks, you guys


the most fun ever!



not sure why I include Tysabri pics in the "fun times" section

HOW ADORABLE IS THIS GINGERSAURUS????

we had a who can do the best barbie hairstyle competition.
Ken and I did not win.

First sentence of a story Kylie is writing!!!
You want to know what happens next, don't you?
(Me too!)

selfie with my favorite gal in front of the sunset

a new origami card

my gingerbread scene

my mom's gingerbread train

SIL Tami's fancy cabin. how cute is that campfire?
a very special structure from the brother unit

an amazing detail from Kylie's gingerbread scene

Kylie's gummy bear ice skating rink and outdoor plaza

she's already mastered the art of posing for a pic while playing

the best, you guys.

under the lights for my Cirque Musica show


one of literally hundreds of silly selfies we took

The One-Second View of My Life:

October


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November

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