Saturday, March 26, 2016

This Week in My Life: Week 12 of 2016

The view from here:
mmm, grapefruit

awesome sunset the other night

kind of fun to watch the old clinic (they built a new one) being demolished.
my old workplace (the library) is in the background here.

when you get an avocado with a tiny pit, it feels like you won a prize.
nothing is worse than getting one with a enormous pit.
this one was a winner. tiny pit = more fleshy goodness to enjoy!

a favorite snack - strawberries and Nutella

What I made this week:

a set of origami elephant magnets with a customized gift card

A list of crappy things that happened this week:

1. I spilled a large cup of hot coffee mostly on my lap (which was not pleasant), but some got on my laptop as well. The keyboard is now fried. :( Luckily, I do have a work laptop that I hardly ever use, so that's how I'm typing this. Most of the programs I need and use regularly are on the other one, though, so I'm still doing what I can on there. (There is an assistive on-screen keyboard, where you can click on the letters. Helpful for when I need it, but it takes WAY too long to type out even a few words.) My techie bro (Hi, Garrett!) thinks I'll probably be able to replace the keyboard for only $30 or so. I'm hoping that's the case, and that nothing beyond the keyboard got damaged.

2. The car saga, conclusion: Spent another $433, bringing the grand total to just under $1,000. Seems to be working now. Not a happy camper about all of this, but trying to just let it go. 

3. Got my MRI results. They're not good. I'm working on getting copies of all my scans, but here is my artistic (ha!) rendering of one of the perspecives:

lots of lesions, some large, one really large
and this is just one area/perspective/slice
plenty more lesions elsewhere

At my scan a few months ago, in December, I had tons of new lesions and plenty of enhancing lesions. A few months later, and I have lots of new lesions, and even more enhancing ones. One lesion in particular is pretty enormous. On the radiologist's report, the conclusion was "Extensive progression of disease." That was pretty upsetting to read.

The conclusion is that the Aubagio is not doing anything for me (DUH). Back to Tysabri it is. Things were so, so bad back at the beginning of this MS ride, and Tysabri completely shut everything down. From 10 or so exacerbations a year to ZERO for over 7 years. There was a little bit of activity on my scans over the years while on Tysabri the first time, but not much. So I'm pretty anxious to start it up again and shut the disease down again. Hopefully I'll have my first infusion within the month.

My weakness is close to 100% back to normal now, but still not quite. And I'm still having a LOT of extra tingling and numbness in my legs, both hands, and my face. And my pain has been through the roof the past few days.

Friday, March 18, 2016

This Week in My Life: Week 11 of 2016

The view from here:

it's been foggy a lot this past week
My mom had surgery on her knee this week. It was a long day for both of us, though overall a much harder one for her! We were there for about 6 hours. Lots of waiting. The surgery went well, but she's having a lot of pain and weakness, as well as some side effects from the pain meds. It's been a role reversal for us this week, as I've been taking care of her the way she so often has done for me.

waiting in the pre-op room with my mom before they kicked me out

charging my phone in this handy dandy charging station

reading a good book in the waiting room

The gown she wore connects to this hose that blows hot air into it!
I thought this was strange but cool, and funny since it made her "inflate."

This is her knee bandaged up and enclosed in a compression stocking.
I have really cool pictures I could share of the actual inside of her knee, but some
people *cough-my-sister-cough* apparently don't find this as awesome as it is, so I won't post them here.

On the MS front:

Getting over steroid withdrawal took a few days of feeling awful, but it's finally over. As for the relapse itself, I still wouldn't say it's 100% better, but it's improved a lot. The weakness was still pretty major even a few days after I'd finished the steroids, but it's now at around 90% better. Significant, certainly, but I'd rather it was all the way. I'm also still having plenty of tingling/numbness going on. Today it's been in both hands. :-(

What I read this week:

Again, sadly not a whole lot. I'm almost done with Love Anthony, after which I'll get back to Divergent.

I thought I would have done more reading while spending so much time waiting around during my mom's surgery, and I did read some, but mostly I got distracted by the conversations around me. I almost had a hysterical laughing fit during one such moment of eavesdropping due to the subject matter and the way in which it was discussed.

A few days after the surgery, I took my mom in for a wound check, and once again heard some interesting convos in the waiting room. Of particular note was a conversation in which a lady was complaining about her neurologist because he keeps trying to get her to go on an MS drug. Her opinion on the matter is that she's already tried a few and they either don't work or they "make her see yellow school buses flying at her" or they can give you a brain disease that kills you. So that was interesting. I almost wanted to insert myself into that conversation, but I refrained. While I certainly understand her concerns and issues (except for the flying school bus side effect!), I also think that choosing to do NOTHING is probably the worst option of all.

Friday, March 11, 2016

This Week in My Life: Week 10 of 2016

The view from here:

baby pinecones

digging these early signs of life

afternoon sun peeking through the gloom

rainy day

MRI time
It was awesome. I love MRIs (for real, I know I'm weird).

hospital art
Steroids Day 1

Steroids Day 2

Steroids Day 3

On the steroids:

Today is my last of a 3-day course of oral steroids for this relapse. I very much prefer oral to the intravenous. I've done compounded versions in the past, but my current crappy insurance naturally won't cover it, so I'm taking 25 50mg Prednisone pills a day. They are the worst. Taking them with pudding helps.

I feel as awful as always when I'm on steroids, though I've forgotten how bad this level of awful actually is since it's been 8.5 years or so since I last took them. I even experienced quite a lot of vomiting on Day 1 this time, which was new. (Not right away after taking them, luckily, so they stayed down. It was about 14 hours afterwards.)

Pretty much no sleep. Killer headache. Irritability, though it seems like not as bad as in the past. Nausea.

The big bummer in this story, though, is that my left-side weakness has not improved at all yet. (Well, maybe a little bit, but it's still fairly bad.) It seems like symptoms improved pretty immediately in the past, so this is concerning.

I've also been having intermittent awful periods of vertigo, though this technically started a few days before the steroids, so I have to blame the MS itself, and not the steroids for this one. But horrible room-spinning doesn't help at all when I'm feeling this crappy from the drugs.

I really can't believe that I did this steroid thing around 7 times back in the day WHILE going to grad school full time and working as a teaching assistant and teaching a bunch of private lessons. How did I do that?

The car saga non-update:

The car saga update I mentioned last week (the return of the original problematic symptoms) doesn't really have an update yet. The problems haven't been happening consistently. Fairly bad sometimes, relatively nonexistent other times. And not all of the symptoms have returned. The most concerning of them aren't happening, which makes it at least drivable. So I've delayed doing anything about it, at least until the next paycheck.

What I made this week:

dollar bill origami camera!

What I read this week:

Not much of anything, sadly. Reading on steroids doesn't work that well. Started Divergent.

Saturday, March 5, 2016

This Week in My Life: Week 9 of 2016

The view from here:

This one's for you, Heather!
I went to a place I never go to except when you're home to eat a free birthday breakfast.
got a much-needed haircut, bringing back the side bang for the first time in a while
an awesome package of birthday goodies from my sistar:
my fave ginger mints, a cool clay face mask, homemade hot sauce, and

the view from the neuro waiting room
The next chapter in the crappy car saga:

After spending $550 10 days ago and the car seeming to be fixed, as of yesterday the original problems are back!!!!!!!!!!!!!!! UNACCEPTABLE, Subie!!! (Subie is my car's name.) Taking her in on Monday. Hopefully by next week, this unending craptastic story will be concluded for good.

On the MS front:

The left arm weakness continued and the left leg joined the party. I couldn't get into the neuro until yesterday. The neuro exam was pretty funny during all the push/pull or don't let me push/pull parts. Right side did its job, left side was immediately defeated. Here's a video of some of the weakness in action:

The results of the appt: it's a relapse/flareup/exacerbation/bad-thing (DUH), going to get an MRI right away then start steroids (OH JOY), going to stop the Aubagio posthaste, almost certainly going back to Tysabri. I'll keep you posted!

What I read this week:

I hadn't realized that I haven't received any issues of Momentum since I moved a year ago until I saw this issue in the waiting room yesterday. Flipped through it and read the pain article seen on the cover. Nice to see the validation of this as it's a major problem for me and one that wasn't really known or talked about much until relatively recently. Didn't really learn anything new except for the idea of Botox injections for pain. The lady quoted about it has leg pain that sounded an awful lot like mine, so I'm very intrigued.

Really enjoyed this blog post by Robert. Loving as always, Kate's monthly email newsletters.

Finished Playing With Fire. Definitely different from her usual books, but really liked it.

Read What She Knew, by the mom of the kid who plays Timothy on one of my favorite shows, Call the Midwife. Loved it.

Read A Curious Mind. It was okay with some interesting stories, but overall not nearly as good as I was anticipating.

Friday, March 4, 2016

Another TWIML Delay!

Today has been a looong day involving a doctor's appointment (verifying that I'm having a relapse duh) and another chapter in the horrible car saga (the happily ever after I left you with last week did not last). So two very crappy things!

But there were some good things, too, like yummy food and a pretty decent haircut.

Instead of writing a post now in my overly tired and loopy state, I'm going to make y'all wait just one more day! In the mean time, go vote in my poll!

Tuesday, March 1, 2016

An Ode to My Favorite Fictional President, Jed Bartlet (Who Has MS)

In honor of Super Tuesday and my deep, deep desire that any of my favorite fictional presidents (Bartlet from West Wing and Palmer from 24 are my top two, by far) were real and running this year, I've decided to spend a little time here celebrating President Bartlet.

Reasons I love him:

1. The jacket flip:

2. I generally found him to be ethical, empathetic, and a maker of great policy decisions.

3. The MS storyline!

If you haven't seen The West Wing, I strongly recommend you watch it for the MS storyline alone. MS is not an overwhelming factor overall and it isn't a part of every episode by any means, but the disease is a major character on the show and it's handled very well.

I started watching the show (after it's run on tv was over) specifically because I'd heard that the president had MS. I ended up LOVING the show for tons of reasons, but the MS storyline was certainly one of them. It did something big for MS awareness, as this was a very popular, mainstream television show, and the disease was presented in a factual, real way. It also provided an emotional insight into the disease from the perspective of both the person with MS and their loved ones. It, of course, was also unique in that the person with MS was the leader of the free world, and he was hiding the disease from everyone except his wife, especially the country that elected him. It all comes out eventually, and it's extremely problematic, but he gets reelected despite the disease.

Here is the scene when Bartlet's Chief of Staff has just learned about the MS:

And here is when the Communications Director does:

There are a few other MS-related West Wing clips on YouTube, but I kind of want to get the whole MS storyline up there. I obviously think people should watch the whole series, but it would be cool to just see the MS storyline. We'll see if I ever get around to doing it.

I watched the show with my mom and we had a big argument about the MS storyline. Would you vote for a presidential candidate with MS? I said no. My mom was pretty upset at this, obviously on my behalf. I certainly understand her arguments, and ultimately if Jed Bartlet was a real candidate, I would totally vote for him. But if MS was a factor made known ahead of time, I think I would hesitate. When he's first elected, his MS isn't really impacting him. It certainly does impact him as the series goes on, but he's still entirely capable and believable. Knowing what MS fatigue alone is like, I just question if a job that incredibly demanding would be a good idea. All of this said, I also think I'd probably be personally offended and pretty upset if someone else expressed this same opinion. (Whether people expressed it or not, though, I highly highly highly doubt this country would ever elect a president with MS or any of a number of other diseases/disabilities.) Thoughts?

Assuming he/she is otherwise your dream candidate, would you vote for a Presidential candidate with MS?