Saturday, December 3, 2016

This Week in My Life: Week 49 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.

Friday, December 2, 2016

My MS Symptoms Top 10 Countdown - #3 Weakness

Yikes, it's been almost two months since my last symptom series post! It's been a busy and tiring stretch, but part of my delay is probably because 2 of the last 3 symptoms I'm planning to write about are doozies. But today, I'll get the last one that's easy to write about out of the way - weakness!

Weakness in MS does not mean that the muscles themselves are weak. (Although that can certainly happen as well, as MS can often lead to being less active and the muscles will become less well-conditioned as a result.) Rather, it's the muscles aren't getting the message to do their jobs because of damage to the nerve fibers.

Muscles in both the arms and legs have had some weakness issues for me. In my most recent relapse, the entire left side of my body was weak. It was endlessly fascinating to me to not even be able to hold my arm up in the air without it falling back down as captured in this video that I shared a while ago:



After time and steroids, the left side weakness is better. I can now lift a 5-lb weight again. And I can stand in the security line scanner airport pose without my arm dropping!

In the past, weakness has just meant that large muscle groups (especially my quads) would reach total exhaustion WAY sooner than they should have. Pre-MS Kayla could have comfortably biked for miles; post-MS Kayla's legs would completely give after only a handful of blocks. Activities like biking and climbing stairs were impacted. Walking was as well, but not nearly to the same degree of intensity. There have been some not-too-long-ago examples of weakness impacting walking ability more significantly, though. A 1-mile walk near my home that I take pretty regularly saw my speed going from maybe 3 mph at the beginning of the walk to maybe 0.25 mph by the halfway point, as every step felt like moving lead.

So there has been some pretty significant acute weakness for me in the past as well as some chronic weakness issues that continue.

Saturday, November 26, 2016

This Week in My Life: Week 48 of 2016

A belated Happy Thanksgiving to all of you in MS blog land! I'm thankful for those of you who read this and for those of you who write things that really resonate with me. It was a tiring but busy few days with my favorite person (and her parents and my mom) and I'm very thankful I got to spend the holiday with her (and them).

The view from here:

natural horn fun

Kylie made this Pla-doh turkey! Isn't it good?

It sure is nice to have a computer professional in the family.

This girl really likes snow, I guess.
We took a walk and she carried a giant snowball the whole time!

Best walking buddy ever. (No offense, mom! You're a good runner-up.)

We made this origami turkey together.

Coloring parties are the best parties!

Excited to start our annual tradition of building gingerbread houses!

We usually use a giant communal bowl of frosting, but this year we all got individual bowls.
I only ate a few spoonfuls. ;-)


The final creations of everyone.
Mine includes a whole menagerie of candy wrap origami animals

I taught this girl some origami and she made these all by her self!!!
#SuperProudOrigamistAunt

Things I made this week:

Origami Advent calendar for my niece!

Origami sloth Christmas card!

This probably only amuses me, but it really cracks me up, so it's okay.

Sloths on a vine.

Snow is the worst, but this cute penguin family moved into my back yard, so it's cool.

See you next week! Or maybe sooner...maybe some symptom blog posts will finally happen this week.

Saturday, November 19, 2016

This Week in My Life: Week 46 of 2016

The view from here:
Sunsets :-) and Snow :-(






Saturday, November 12, 2016

This Week in My Life: Week 45 of 2016

I wrote a thing about the election results from my MS perspective. I held myself back from writing anything non-MS-perspective-y, so I guess I do have some self-control! Now, onto pictures from this past week.

The view from here:
She is constantly raising one eyebrow, then the other, when she looks at you! #BEST

One of the only reasons I think maybe getting a dog would be a good idea is that it
might lay on my feet and that might help the constant nerve pain in my feet.
My sister's dog constantly laid on my mom's feet, but never on mine. :-(

Arlington National Cemetary

Jefferson Memorial









the Capitol

Supreme Court

My sistar works here! Jealous!
Technically, not in this exact building, but she is a Library of Congress employee.

They still have leaves on the trees in DC, and pretty colorful ones at that!

LOC

Thomas Jefferson's library

LOC




White House

Treasury

a family portrait


In which I try to take pictures of some pretty leaves on the water and my mom
and sistar both freak out about me falling in. Sistar to the rescue with the hood grab.

One day post-trip and post-election and my face says it all.

watching post-election news :-(

RIP Leonard Cohen :-(