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.

Friday, October 7, 2016

My MS Symptoms Top 10 Countdown - #4 Cognitive Challenges

My brain has always been a huge part of my identity, as I suppose is the case for most people. My intellect and my wit have everything to do with how I see myself and I'm sure are a big part of how others see me. Because of this, I've always been particularly terrified of the potential cognitive consequences of MS. And I've been particularly devastated by the realities.

Cognitive issues I've experienced:

  • Brain Fog: Brain fog is a fuzziness, a slowdown of thinking speed, and having trouble concentrating. Brain fog is a perfectly apt descriptor. It's like a heavy fog that limits what you can see.  A favorite fictional character with MS calls it brain mud instead of brain fog, which is also accurate. It's messy and hard to walk through. Sometimes I have trouble understanding simple directions. I often have trouble understanding what someone is saying or what something means. Much of my thinking process is just significantly slower. [Some of my brain fog is likely exacerbated by drugs I take for nerve pain. More on that in a later post in this series.]
  • Memory Issues: Some who know me might argue that my memory has never been stellar, at least in some areas. It has definitely been made MUCH worse with MS, though. I've had many big lesions in the areas of the brain most associated with memory. Memory issues are a combination of difficulties - trouble acquiring new info, trouble retaining new info, and trouble retrieving the info.
  • Word Retrieval: As a lover of words and as a writer, this one is especially awful. Sometimes it is also hilarious. We all experience the inability to think of a word from time to time, but the rate of this happening for me has skyrocketed. Sometimes it's for more obscure words, but it's often for incredibly common words. I often try to act out the word to have someone help me find the word, but this is often hilariously unsuccessful. Or I'll just describe the word, like calling a match a fire stick. Sometimes I use the wrong word, and I'm often not even aware of it unless someone gives me a weird look or asks me about it. A favorite example my family and I still laugh about is when I replaced the word slippers with muffins. Or sometimes I make up a word, without even realizing that the word I'm saying is not a real word.
  • Decision Fatigue: Everyone who knows me will tell you that I've never been fond of making decisions. I will avoid making decisions as much as possible, especially on things like where or what to eat. That said, making decisions has gotten much harder thanks to MS. Decision fatigue is something that happens to everyone, but for many of us with MS, it is compounded. This is related to MS fatigue in general. It is significantly worse later in the day, or on days where the fatigue is just at its worst. Minor decisions are difficult, but making huge, highly consquential decisions - like what MS drug to switch to - can be completely overwhelming. Decision making is the only area where I've used the "MS card" with friends and family, but so far it hasn't really worked. Dear loved ones, when I struggle to make decisions or when I ask you to please just make the decision, understand that my difficulty with decision making is a real symptom of my MS and that making decisions (even over simple things like where or what to eat) can really stress me out. It's not that I just don't want to make the decision, it's that it is actually nearly impossible to do so. It feels like my brain is paralyzed, like I'm stuck and don't know how to move.
My MS-related cognitive challenges have affected my life in a few ways. It has really challenged how I think of myself, and how much I place my intellect at the core of my identity. I've had to wrestle with the question of how I can or should see myself when that is threatened. It makes me feel bad about myself. It was also a big part of why I left a job that I mostly loved. Teaching applied music lessons (one-on-one) as well as teaching classes that involved lecturing to large groups was something I loved, but it was something that was getting harder to do. I often struggled to find the right words and would sometimes even forget what I was saying in the middle of a sentence. This was embarrassing and upsetting for me, and it was probably sometimes frustrating for students. I still teach university classes online, which is a medium that is more forgiving since it gives me more time to find my words and make sure I'm making sense. 

In many ways, my cognitive challenges are only mild. Some days are worse than others. A big part of why the deficits I have suffered have been so upsetting is the fear they spark about what could be. I'm utterly terrified of losing more of what makes me me. It's already bad enough.

Saturday, October 1, 2016

This Week in My Life: Week 39 of 2016

It's been a rather awful week. The promised symptom post is almost done, so it should definitely go live before next week's TWIML post. I'm too crabby right now to write anything, so here are some pretty pictures from the week.

The view from here: