Saturday, October 29, 2016

This Week in My Life: Week 43 of 2016

Another week, another lack of a symptoms series post. It's been a rest-and-recover week after my last trip and before my next trip, and there have been several days of really bad pain. :-( I promise to get up at least one of the remaining three posts in the countdown before the next TWIML post.

The view from here:

don't be afraid to stand out

voting absentee is awesome

this was not fun

What I made this week:
a different elephant model

probably the last lemon garlic grilled green beans of the season. :-(

roasting marshmallows in the dark wearing a headlamp as one does 

wrapper from delicious cone wanted to become a bird.

a big order of white elephants for a store window display with a "white elephant gift" theme

What I read this week:

It was the anniversary of Paul Wellstone's tragic death this week and a handful of Facebook friends posted something about it. Having a vague memory about him having MS, I decided to look it up and was pretty alarmed at what I found. Every news story (from Minnesota Public Radio to the New York Times) said that he had been diagnosed with a very mild form of MS - primary progressive. Ummm, what? Primary Progressive is the worst form of MS, as far from mild as it gets. There were also some bizarre statements from his doctor (a neuro, but not an MS specialist, from the Mayo Clinic) about predicting how his MS would progress:
Bartleson says while he can't predict with certainty, he says the most that should happen is Wellstone's right leg will remain weak. He says he doesn't expect the MS to spread to other parts of the body. At the most, he says Wellstone's left leg could be affected sometime over the next six years.
Seriously?! Pretty sure prediction of MS symptoms isn't really something you can do, especially like that. First, he says the most that should happen is one leg will stay weak, then he says the most that could happen is his other leg could have issues too within the next 6 years. No wonder people's understanding of this disease is so murky or just plain wrong, when stories like this about public figures are so full of misinformation.

I enjoyed this post from Katie Jennings that talks about navigating the tricky road of when and with whom to talk about your MS and how truthful you should be. Like her, this is something I think about a lot and always struggle with.

This post about anxiety over being a burden also resonated with me.

This story and video is exciting and full of heartwarming feels, and it's MS-relevant in that they mention MS a few times and this kind of technology could certainly help people with certain MS-related disabilities. As a musician and someone who worries about what this disease could potentially take from me at some point, I really loved this story.

Saturday, October 22, 2016

This Week in My Life: Week 42 of 2016

As I mentioned last week, I spent the majority of this week on a pretty last minute road trip with my friend Heather. She was moving across the country and her husband wasn't able to make the trip with her. I happily filled in to be the keep-her-awake road warrior partner for the journey. We planned our route around some pretty places we wanted to stop - Tahoe, Grand Teton National Park, and Yellowstone. Unfortunately, it was pretty crappy weather (rainy, snowy, foggy, overcast, COLD) pretty much the whole time. We did have some moments of blue skies and luckily it cleared up enough so we both weren't 100% bummed about not getting to see what we had wanted to see. It was a very fun trip. Lots of pretty sights and some good bonding time as well. I am now, of course, absolutely exhausted.  And I'm off on another short trip (to visit my sistar in D.C.) in just a few weeks, so I've got to rest up! Here is a random assortment of pictures quickly picked from the 800+ that I took, in no particular order.

The view from here:

Lake Tahoe. still pretty even though it was extremely overcast.

Bonneville Salt Flats
REFLECTIONS are the best!

pretty drive through part of Idaho.

that's a moose!

lots of animal friends!

Love the fall colors against the snow even though I hate snow.

Clouds were significantly less obtrusive on the second day.
Wish they would have gotten a little higher, though.


quadruple mmmm: autumn colors, water, clouds, mountains.

ew. snow is gross.

Old Faithful

okay, I guess parts of North Dakota are pretty. ;-) for Gwen

The sun setting on an epic road trip.

One little MS tidbit/rant. I got a letter today from MS One to One, congratulating me on it being one year since I started Aubagio. That's true, but it's also been 7-8 months since I STOPPED taking Aubagio. They say they've enjoyed speaking to me this past year, but they only spoke to me in those few months I was taking the drug and they were then made aware that I was no longer taking the drug. So, dear MS One to One and/or Sanofi Genzyme if you're reading this (haha, you never know), your marketing department needs some help. Maybe you should hire some people with MS who know what all of this (including all of the marketing info and constant stream of mail from drug companies) is like. I also found it hilarious that the letter was addressed to Mr./Ms. Nelson. Also pretty sure they knew my gender, but whatev!

Friday, October 14, 2016

This Week in my Life: Week 41 of 2016

The view from here:

In this horrific political climate with all the hatred spewing around,
we've got to find ways to let the light shine in.


What I read this week:

Smarter Faster Better by Charles Duhigg. Two thumbs up!

A few interesting things in MS research: a new software that makes spotting MRI changes MUCH quicker and easier, a discovery of a potential of balance and mobility issues in MS.

I'm headed off on a rather last-minute little road trip. Hopefully/maybe there will be another symptom post this week, but if not, see you next weekend! I hope to have a few pictures of pretty places to share with y'all.

Saturday, October 8, 2016

This Week in My Life: Week 40 of 2016

Did you catch yesterday's post about cognitive challenges?

The view from here:

In 10 years of going to various neurologist's offices, I'm pretty sure this is the first time there's ever been a fun anatomical model of a brain to play with! (Or maybe I'm wrong. See the memory issues I wrote about yesterday!) I've definitely seen several of the spinal cord models, but I'm all about the brain, so it's always saddened me when there isn't one. I immediately took it apart and dropped all of the pieces on the floor...right as the doc walked in! Haha.

There was also this cool topographical-like 3D brain map.I like the eyeballs.

In the close-quarters room, there are always at least 4-5 of us getting infused with something (mostly chemo). So I always hear a lot of details about people's bowels, among other things, when the nurses ask them a bunch of questions before the infusion. This time a lady went ON AND ON AND ON about her little rabbit pellets. She's okay with them as long as they're soft! So glad the curtain was pulled, because I was losing it. Luckily, I somehow managed to keep my laughter silent!

Tysabri = time to catch up on the past month's Time and Entertainment Weekly and People mags.