This Week in My Life: Week 25 of 2016

First of all, I think I just blew my niece's mind. While on a video call with her today, and simultaneously starting on this post, I asked her to guess what week number it was, like how many weeks have we had so far in 2016. Her first guess was reallllllllly high, so I informed her that there were only 52 weeks in a year. That blew her mind. I get it. I miss being a kid, and feeling like time went by soooooo slowly. Now it feels like it goes by at warpspeed. Anyway, once I gave her the parameter of within-52-for-a-year, she guessed 26, so  right on (week 25 ended yesterday). As a reward for a good guess, she got to give me a little virtual makeover:

I think I rock this look.

The view from here:

Horn fountain at my mentor/friend's house.
Musicians will get why the addition of clams is perfect and HILARIOUS.

My friend has an okay garden.

Afternoon light on the floor. 

My sister sent me this picture of card catalogs at the Library of Congress.
Then we had the following text exchange:

We're both former library employees and lifelong hardcore library lovers.
Old-school card catalogs get us excited.

What I made this week:

Yeah, these kebabs look amazing but they WERE NOT.
The marinade ended up sucking despite being made from only delicious things.
I made half chicken and half tofu. Tofu on the grill was a TERRIBLE idea.
Very disappointing. 

Expanding the kinds of origami magnets I sell:
elephants, sloths, pigs, giraffes, cranes, whales.

This grilling time was better overall.
Lime+Cilantro Sweet Potato Wedges, cheese-stuffed jalapeno, and broccoli in foil packets.

Lots of pretzel roll sandwiches this week. Yum.
Too big for my mouth, though.

What I read this week:

Host by Robin Cook. I'm a big fan of medical thrillers. This one was okay, but definitely not his best. But I took a picture of this page, because I knew the MS community would get it. Boo big pharma!

Now I want to see the actual data on advertising costs vs research costs vs lobbying costs.
I know I can't flip through a woman's magazine these days
without coming across at least one Gilenya, Aubagio, or  Tecfidera ad.

Being Mortal by Atul Gawande. Very good book on an important topic by an author I love. Read it!

And in MS reading:

Lots of stuff online this week about the study from the Lancet on the Canadian chemo + stem cell treatment. My chemist friend Brian (husband of my BFF Heather) sent me the link to abstract from the Lancet article. I've been aware of this and similar stem cell trials, so was very interested to see the results. They are crazy promising. What I think is the most exciting is that several patients not only saw the MS stop in its tracks, but there was REVERSAL of previous damage. That's HUGE.

Then I saw someone share this article on Facebook which puts it in perspective a little bit. Sobering that this potentially life-changing and amazing treatment may only help 5% of the MS population. Or rather, only 5% may qualify at least based on the current guidelines? It's also a pretty extreme treatment and potentially risky (one person died in the trial), but I think the results make it very worth looking into. If I have to stop Tysabri at some point if I become JC-positive, I may well try to get in on a trial for this kind of treatment.

Yesterday, my brother emailed me this article on the stem cell thing. I think this is the best article I've read yet in terms of how thoroughly it discusses the trial and its results. If you're only going to read one article about this, read this one! The inside look at one patient who was hospitalized, in a wheelchair, and had no feeling from chest down before the study to working full-time, and living an active and athletic life after the study and having no MS activity 14 years later (despite having various other challenges that linger from the chemo) is particularly illuminating and inspiring. This is also the best article because it has many very helpful graphics. The tidbit that it costs $50K-$65K is included as well. [But that's one and done. Pretty much all the other MS drugs cost AT LEAST that much for just ONE YEAR. See above mini-rant about big Pharma above.] Here's an example of the helpful graphics in the Vox article:

this visual helps, yes? (not included on this is the fact that 1 patient died.)

This article suggests taking Vitamin D probably doesn't do any good. Well, that's just great. I can't possibly get it from the sun the majority of the year where I live. I'll keep taking it if only to prevent having my doctor yell at me when they test my levels once or twice a year. But I wish taking it would actually do something. [Then again, maybe we'll see another study later this year with the completely opposite conclusions.]

Here is an interesting look at changing the name of relapsing-remitting MS to just relapsing MS, because "MS does not remit." I get the point, for sure. When we hear "remission" in relation to cancer, we generally think of that as it-could-come-back-but-pretty-much-cured, right? It's not the same with MS. Many people who are not on drugs and choose to stay not on drugs because they are not currently experiencing symptoms don't realize that the disease is still probably doing damage. It's always there like the rude, messy, mean uninvited guest that it is. Not that I think the current MS drugs are perfect, but is taking them better than just letting the disease run free? Yes.  AND THEN THERE IS THE COMMENTER ON THIS ARTICLE THAT SAYS WHENEVER HER MS "KICKS IN" SHE JUST "HEALS" HERSELF BY GETTING RID OF THE GLUTEN/SOY/DAIRY/GMO/SUGAR. I CAN'T EVEN.

Off to have the most fun week ever! Going to get my niece and have a week of fun times!!! Wahooooooo. Expect pics of said fun times next week.

This Week in My Life: Week 23 of 2016

The view from here:

Reading on the backyard patio under this vibrantly orange umbrella.

Celebrating National Chocolate Ice Cream Day!

Finally planted some herbs. My 2 absolute faves: Cilantro + Basil. 

I've been seeing a lot of these intensely colored bugs lately.

Clouds are cool.

Got my vitamin D from the upstairs balcony for the first time. 

Went to the Spring dance concert put on by my dance teacher friend. It was great!

What I made this week:

Some pink + gray origami elephants for a baby shower.

What I read this week:

I've finally been able to relax and have time to read more this week after finishing up a few huge orders last week. Yay, book time!!!

For the past few weeks, I had been trudging away at the super long Lark Rise to Candleford by Flora Thompson (technically a trilogy of novels in one volume) but I finally finished it this week. I LOVED the BBC Series, which is why I read the book, but ultimately it wasn't all that great of a read. It was really just 500+ pages reciting facts about life in a specific area at a specific time period. Interesting, yes, but I wish there had been more of the personal stories (there was some of this in the book, just not enough for me) and that it would have been more like the show. However, they did pull tons of material from this book to make the show and turned it into something pretty great. I don't necessarily recommend the book, but I do recommend the show. If you like BBC period pieces, check it out! I would liken it kinda-sorta to a British Little House on the Prairie, so check it out if you were a fan of that show as well.

Finally read Harper Lee's Go Set a Watchman. On the one hand, it of course pales in comparison to To Kill a Mockingbird. But on the other hand, it is a good book in its own right, and it made my heart so happy to read of these characters again. Scout, or Jean Louise, at 23 is just as lovable as she was as a child. Not every character lived up to the ideals you might have expected, but Scout did. Bizarre that this is the first novel Lee wrote, that this was actually written before Mockingbird.

Finally finished the Divergent trilogy with Allegiant. Totally loved the whole series. I was very resistant to reading it at all for some reason, but I'm glad I read it anyway! [Traci: get on it! You're the only sibling left who hasn't read it.] Now I'm excited to watch the movies.

And in MS Reading:

STUPID SH*T PEOPLE SAY from Tripping on Air. I even left a comment sharing the worst thing I've ever had said to me about my MS, and a not-MS-related awful thing I once said as well.

Yet another story of people saying awful crap to someone with MS for parking in a handicapped space when they have every right to park in said space. Saw this shared quite a bit on Facebook this week. 

This story by Matt Cavallo, How Health Insurance Led Me into a MS Relapse, made me nod in recognition and shudder with rage and grief. 

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 MOST AMAZING COOKIES EVER!!!!!!!!!!!!

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.

This Week in My Life: Week 8 of 2016

Update on the car drama:

Took the car to a different place and was told that 1. the part had been put in totally incorrectly by the previous place and that 2. the real problem was something else entirely and that 3. it would cost about $400 to fix. Great. So the total with the part (that maybe wasn't even needed) + a rental car for one day + a new fuel pump + labor, the grand total came to $550. That would have paid for the new tires the car desperately needs, but oh well. At least the car is working again!

The view from here:

book + coffee + blanket = happiness

my mom made me this delicious breakfast burrito

it's looking and feeling a lot like spring out there
not at all typical for a MN february

On the MS:

Various paresthesias have been continuing, and now a more troubling issue has joined them: significant weakness of the left arm. Much like how I enjoyed making faces in the mirror when I had Bell's Palsy, I'm morbidly fascinated by this. Holding both arms above my head, or straight out, or in any position really, my left arm will slowly dip down lower and lower. It started yesterday and doesn't seem any worse today, but is also not any better. I experienced this before during my first awful year of MS struggles, especially difficult because I was trying to finish my master's degree in horn performance at the time and holding my horn up with my left arm was a major challenge. I'm still not sure how I completed my master's recital for this reason alone.

What I read this week:

• Reread my beloved favorite, To Kill a Mockingbird. It's as great as ever. So many dear characters and plenty of tears.
• Crimson Shore. Another thrilling adventure (ending with a massive cliffhanger) with one another beloved character, Special Agent Aloysius Pendergast.
• About three-quarters through Tess Gerritsen's Playing With Fire. This author usually writes medical thrillers, but this book centers around a piece of music for violin. Turns out Gerritsen is some kind of superwoman  - not only is she a doctor and a bestselling author, but she also wrote a 7-minute composition for violin and piano to go with the book. I bought a recording and it's pretty cool to listen to while reading the book since the piece of music is such an essential part of the story.

This Week in My Life: Week 7 of 2016

The view from here:

I've got a nasty cold with horribly congested sinuses.
I've only been sick like this one other time since the MS diagnosis, as opposed to at least a few times a year previously.
I like to say that there are certain benefits to having an overactive immune system.

Yes, more time staring at piles of tires.
I like that this picture is blurry, because that's kind of how I was seeing the world yesterday.

Update on the car situation and reason #2 why yesterday sucked. The part I ordered arrived yesterday, so I took the car in. I planned to have the courtesy car bring me home while it was being worked on, but turns out, this place doesn't have a courtesy car! They thought it would take around an hour. There happens to be a Mexican place right next door that I happened to have a gift card for, so I thought this would be fine. There's also a thrift store in the same little strip mall, so I stopped there first to buy a book, since dining alone without a book didn't sound fun. After eating, I returned to the car place. It wasn't done yet, so I sat down by all the tires and continued to read my book. (One perk of the cold: I wasn't overwhelmed by the smell of rubber like I usually am in there.) And then THREE more hours passed. So the one hour estimate became FOUR hours. Then when they were finally done, the verdict was that the part I'd spent $110 on that they told me I needed did ABSOLUTELY NOTHING to fix the problem!!! They didn't charge me anything for the labor and said they thought the real problem was maybe this other thing and suggested a different place to go to get that fixed. Hopefully next week's update will be a happier tale.

spent Valentine's Day with friends celebrating our love for the horn

What I made this week:

A Bacon/Broccoli/Basil Frittata
(I actually made this last week but forgot to post it then.)

What I read this week:

Finished Imagine. I'm now 100% positive I read this before.

Started and finished Defending Jacob and Left Neglected and The Reader, the latter being the thrift store book I read all day yesterday. All of these were good (The Reader being my least favorite by far, mostly because I had trouble really caring for any of the characters. I felt some empathy for them, more towards the end of the book, but I was too put off by a lot of what they did.) Left Neglected (by the author of another great read, Still Alice) was definitely my favorite. 

Next on my reading docket - rereading To Kill a Mockingbird (after the loss of Harper Lee) and reading Crimson Shore. 

http://thedailyquipple.com/thank-you-harper-lee/

Once again, I'll end with wishes that next week is better than this one!!

Book Review: Notes From a Minor Key by Dawn Bailiff

A confession: I read this book more than a year ago, and I fully intended to review it for this blog soon thereafter. I know I had all kinds of specific thoughts I wanted to share, but my memory now offers only general impressions. The perfectionist part of my wants to reread the book just to write a better review, but I'm fighting the urge.

I was extremely interested in this memoir because it is about a professional musician with MS, and it wasn't disappointing in that it painted vivid pictures of both life as a musician and life as an MS patient that I could very much relate to. Here are some of my general impressions of Bailiff's memoir:

1. It is very well written, with some beautiful descriptive passages.
2. Bailiff had some incredible musical experiences with some incredible people.
3. I would have enjoyed this book much more if she had left out the parts about her supposed psychic abilities.
4. Bailiff discusses repression-as-cause-of-MS in a similar vein to Gabor Mate. She takes it further to equate the higher rates of MS in women to a socially inflicted female shame, calling MS a "malady of repression, of anger and frustration turned inward - maybe even of self-hatred." As I've discussed before, I find these theories quite troubling.
5. I dog-eared a page because it is a description of my worst symptom: "There is this creepy, itching sensation all over my body, but when I scratch, I realize that the itch is inside my skin, underneath it somehow, and I can't get to it." Bingo.

Book Review: This is How

I am a big of Augusten Burroughs. I am also a big fan of self-help books, though I probably shouldn't have publicly admitted that. (It's mostly in the same way I really love reading organization blogs. They make me happy and excited while I envision a magical, oh-so-possible world, but my organization skills have yet to move one iota in the right direction. Same with imagining the more effective-productive-happy-assertive-etc self I could so easily become as I read the self help books. I feel happy and excited as I read, but I remain pretty much the same old self.) 

(I'm pretty sure the previous parenthetical rant made me look a little worse, rather than the better I was going for.)

Anyway, Augusten (I've apparently decided that we are on a first-name basis!) has written a whopper of a self-help book. Using his usual witty style, he gives concise and very direct advice to people in all kinds of situations from the very pragmatic (getting a job, losing weight, riding in an elevator, etc.) to the very traumatic (eating disorders, addiction, suicide, grief, etc.) to the deep-metaphysical-profound. He may not appear to be "qualified" to give this kind of advice, but overall I think this is some of the best advice out there for a lot of these issues. Plus, there are moments of comic relief!

The reason for my discussing this book on this MS blog is that one of the chapters is called How to Be Sick, and it's pretty good. The major theme of the chapter is VERY applicable for people with MS and for people with loved ones with MS - worrying about what might come next is always worse than whatever is happening in the present moment.

"Once you're in it, it's okay."

Sure "it" can be pretty awful, but "it" is never as bad as the imagining-it-in-advance part is. So, Augusten suggests adopting a "Pay as You Go" model. "What affects you now is what you deal with now." Don't pay now for what you're going to have to pay for in the future, or what you might never have to pay at all.

"Your disease will inform of what to worry about, when."

I also enjoy his pointing out of the importance of naps and snacks:

"Knowledge is important but naps are more important. The details of treatment are often confusing. Cheese is easy to understand. Eat cheese."

There is actually quite a bit of good meat to this chapter, and I recommend reading it. And the rest of the book. Especially if you are like me and enjoy both Augusten (or other searingly witty autobiographical essayists) and self-help tomes.

Chronic Pain is a Chronic Pain

Good luck trying to talk to me today. It will be like talking to someone waking from a deep sleep wherein the dream was a bad one, as described in the following quote:

The pain was always there, pulling me inside of myself, demanding to be felt. It always felt like I was waking up from the pain when something in the world outside of me suddenly required my comment or attention.

from The Fault in Our Stars by John Green 

It is hard to say what is worse about chronic pain, the chronic part or the pain part.

P.S. Sorry for the long absence. Times have been busy (mostly in good, fun ways) and thus I am now completely and totally exhausted because I borrowed heavily on future spoons. Hopefully, I'll post a bit more regularly again soon

Magazine Monday: an extremely irritating quote

I adore O, the Oprah magazine. I particularly love that books and reading are so highly valued in the publication. Several pages of each issue are devoted to book reviews, and there is also a monthly feature wherein a famous person shares what books have made a difference in his/her life. I seem to add at least one - and often, several - books to my To Read list after finishing an issue of O.

The January 2012 issue reviewed one book I will NOT be reading, because of my intense irritation towards the novel's main character. The book is Leigh Stein's The Fallback Plan. The plan spoken of in the title is to develop a chronic illness. Yes, you read that correctly - developing a chronic illness is the goal.  Main character Esther (an onviously entitled, unemployed college grad) states, "of all the plans I could have made for how to spend the rest of my life, this seemed the most desirable because it required the least of me."

That's how we all feel, right? Such luck to be chronically ill! It requires so very little of us, right? And it sure is such a great excuse to not have to live a real, hard, scary, grown-up life, right? Bite me, Esther.