Saturday, November 26, 2016

This Week in My Life: Week 47 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!!!

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!


Thomas Jefferson's library


White House


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 :-(

My MS-related Thoughts on the Election :-(

I make it a point to never talk politics online, despite how often I want to and how much I've especially wanted to during this election cycle. I'm devastated by the results of this election for many reasons, but since this is an MS blog and since I have that self-imposed politics ban, I'll only touch on the MS-relevant reasons for my devastation. These reasons are the tip of the iceberg, but they are plenty big enough. If you can't take any more of this (I get it), you can skip this and just look at the pretty and politics-free pictures coming later today in the TWIML post. But if you are a loved one of mine who voted for Trump, I hope you'll read.

The new leader of the free world is someone who blatantly made fun of a disabled person (while the crowd laughed and cheered) and then tried to deny it. As someone who is at least disabled-adjacent and someone who is more tuned into that perspective than most, that is so very disheartening. But it should be just as disheartening to absolutely everyone. The pres-elect is also a man who claimed to have "donated" millions and millions of dollars to help the disabled, by which he meant he followed the freaking law by making his buildings accessible. By definition, there's nothing generous about that. Except he didn't even do that well or fully! There is a long list of times he's not followed the law and a long list of times he's been justifiably sued for it. There are 56 million Americans living with disability, but this issue should matter to every American.

The Affordable Care Act, I'm the first to recognize, is imperfect. In my opinion, much of its imperfection is rooted in the many compromises Obama was forced to make for it to pass. That said, I also believe that the ACA was one of the most important pieces of legislation ever. That it will likely be dismantled (or "replaced" by something much worse) I find to be so very disheartening. I've read different things about what the president-elect plans to do with Obamacare and, at this point, we have no way to predict anything since he's given us no reason to trust anything he says at all. On the pre-existing conditions thing, the initial report was that people with pre-existing conditions could get coverage under "high-risk pools" which sounds as terrible as it would be. After meeting with President Obama, however, the pres-elect is supposedly considering (probably really only because he would not be able to repeal them) keeping a few parts of the ACA, potentially including the protection for people with pre-existing conditions.  His statements, though, are in his typical non-committal language of choice. What will actually happen is still anybody's guess. And just saying that people with pre-existing conditions should be able to get insurance doesn't mean it will be affordable (which the ACA makes sure of) so for many of us with crazy-high health care costs (well over 125K/year for me) this is a terrifyingly precarious time.

Some articles I recommending reading:

If he does what he says he will do, it's likely that at least 20 million or so Americans will be, once again, without health insurance. That is not okay. For many of the rest of us, chances are the cost will go up. For the wealthy, there will be tax-free health savings accounts. So, as will be the norm under this guy, things are looking great for the rich and terrible for the rest of us. I hope I'm wrong.

Personally, my health insurance situation got worse under Obamacare. (Read: more expensive and sometimes truly not affordable for me, a clunky/cumbersome/broken system for applying/paying/etc., having to fight tooth-and-nail to have vital drugs covered, etc.) This is only because my state was the absolute leader for the whole country in providing high-coverage state-subsidized quality healthcare at low costs to those with low incomes and those most in need. Obamacare forced this perfect system to change, and it didn't go very well. Personally, I'd be okay with things going back to how things used to be, though I fear that beautiful state system won't be there anymore. But as a human being, thinking beyond just my own selfish wishes, I'm not okay with this overall. Overall, I'm horrified that so many other human beings think this is okay. (Again, tip of the iceberg!)

Saturday, November 5, 2016

This Week in My Life: Week 44 of 2016

I broke my promise to get a symptoms post up this week. Oops!

My mom and I are currently in DC visiting my sistar. I'm having another bad pain week so I'm not able to see/do as much as I'd prefer when I'm here. But I will be doing a few things, and I am eating all kinds of delicious food and hanging out with the coolest dog around.

The view from here:

Halloween sunset

sunrise in the air

Nala the yellow lab

she can read!

sistar love

sistar + bro-in-law + Capitol in background