Saturday, June 25, 2016

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.

Tuesday, June 21, 2016

10 Years Ago This Month...

10 years ago in June, MS was already raging within me. It would take a few more months and things getting significantly worse before I would go to the doctor for the first time. But 10 years ago in June, my right leg was quite numb most of the time. It was an often painful, weird feeling. I play horn and when I played with the bell on my leg, it was agonizing. Sometimes it was less of a numb feeling and more of a pins-and-needles, my leg just fell asleep kind of feeling. Sometimes it wasn't just my right leg and foot, but my right arm and hand crashed the party as well. Again, since I play the horn, I noticed this particularly when playing the horn. I convinced myself that I just now had developed an allergy to nickel silver. I started doing research on how I could deal with this new allergy.

I told myself stories about what it could be. Not catastrophizing worst-case kind of stories, but more like, this-is-totally-normal kind of stories.These weird symptoms seemed to come and go a little bit or rather, sometimes be way less or way more intense. I didn't put it together then that heat was a big factor in swinging things to the worse side.

I eventually started to Google these symptoms, but didn't have a whole lot of luck, in part because I struggled to come up with the right search terms. I had enough trouble describing to myself what was going on. I talked to a few horn friends about the supposed allergy thing. It would still be almost 2 months before I told another person the whole story, when I mentioned to my mom in a by-the-way kind of way as I was preparing to hop in the car to drive 12 hours by myself that "My right leg has been numb for a few months now!" I'm sure she really loved how I chose to deliver that one.

By the end of August and beginning of September, things were very different. I was falling down and having a whole lot of difficulty walking. I eventually went to the doctor and I eventually got a diagnosis. But 10 years ago this month, I was living in semi-blissful ignorance. I, of course, wish now that I had gone in sooner and thus gotten on a drug that worked sooner and prevented so much of the awful damage that was done to my brain and spinal cord during this time. The often severe chronic nerve pain I live with to this day - could that have been prevented if I had recognized sooner that a constantly numb leg might be something to deal with? Probably not, but maybe.

But I'm also a little jealous of 10-years-ago me, who (despite my numb leg) had all kinds of dreams and plans that I thought I could achieve. [Current me, of course, still has dreams and plans, too. They've just changed, by necessity. And my belief that I can achieve them is probably not as strong.] That girl who had no idea of the onslaught of financial and insurance related hell that was soon to fall down upon her for probably the rest of her life. The girl who was just a student, halfway through her Master's degree. The girl who was young and healthy and independent.

Anyway, happy sorta-approximate MS anniversary to me! I'll be celebrating the *official* 10 year anniversary in September when I was diagnosed, but if you want to send gifts now, I'm told that the traditional gifts for a 10 year anniversary are tin/aluminum and the modern gifts are diamond jewelry. I'll accept either, just know that if you give me diamond jewelry I'll almost certainly sell it for cash because diamonds are NOT this girl's best friend. ;-) And, of course, I could use that cash to pay my medical bills.

Saturday, June 18, 2016

This Week in My Life: Week 24 of 2016

The view from here:

Parade went right by my house. Nice to be able to just step out the front door and sit on the steps.
It's a pretty boring parade overall, but it's always fun to watch the band I marched in back in the day.

Kind of a cool old car.

Look up!

And look down. My cilantro is growing!!

Fresh strawberries from a friend's garden over ice cream. YUM.

Sorry, fortune cookie, I don't believe you.
This is from Chinese food from a few months ago but just ate the cookie.

Got the exam room with the little spine model this month.

I kind of take issue with this and most pain scales.
One of the issues I have is that it is not necessarily built for assessing chronic pain.
Like pain of a 3-6 that is present every single day for several YEARS can feel like
a 1-2 because it has become the normal baseline feeling. But also like a 9-10 because
a pain that is continuous for years on end is grating in a way that makes it in many ways
worse than an acute worst-pain-ever kind of pain that is very temporary.

Blooming! Raindrops!

This lily is waiting for a few friends to join the party.

Watching a movie "with" my niece. We do this a lot.
Technology is great.

What I made this week:

Lemon garlic green beans on the grill. YUM.

Took part in the #nanogami challenge on instagram to make the tiniest crane you could.
The coral was made from a 2cm x 2cm square, the blue from a 1.5cm x 1.5cm square,
and the yellow was from a 1cm x 1cm square. All were tough, but the yellow one was VERY tough.

MS Update:

I don't remember whether or not I mentioned last month that in my pre-Tysabri appointment, my right leg didn't do so well on the neuro exam. This month it was better. Also, the left side weakness from that relapse a few months ago now? I wrote that it was 90% better a few weeks post-steroids. Eventually that reached more like 98%. A month ago or so, I was able to do a lateral raise with 5 pound weights (one of the lingering problems). But as of last week, I still couldn't do a front raise with 5 pound weights on the left side, only able to bring it up not quite halfway. I decided to try again yesterday, though, one day after my 3rd Tysabri infusion since restarting. And the front raise was fine! In other words, the weakness of the left side is FINALLY back to 100%.  After discovering this happy news, I decided to do a full upper body strength training circuit, and it felt good. I plan to keep it up, as I want to make the most of what I have while I have it and try to maximize the function and ability this body has.

Saturday, June 11, 2016

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 CavalloHow Health Insurance Led Me into a MS Relapse, made me nod in recognition and shudder with rage and grief. 

Saturday, June 4, 2016

This Week in My Life: Week 22 of 2016

The view from here:

Playing horn quartets with friends in my teacher/mentor/friend's sweet recording studio.

Memorial Day flags.

Relaxing outside.

Rain droplets on clover? Is that what this is?

Raindrop on Peonies.

What I made this week:

Garlicky green beans on the grill. Delish!
This is attempt #2. Attempt #1 ended up half on the ground and half in the coals
after my incredibly awful attempt at cool chef-in-the-movies style tossing action. 

This lily burst into bloom sooner than expected! ;-)

Dragon vs. T-Rex. Who would win?

What I read this week:

Still plugging away at a rather long book. But in the online MS-related reading front, here are a few things I found interesting or enjoyed this week:

  • Genetic Origin of Multiple Sclerosis Discovered [The title is a little misleading....the gene mutation in question is only for a rapidly progressing form of PPMS, not just MS in general. But very promising research and a potentially hugely important discovery. Go science! Keep it coming!]

  • Robert has been pointing out some great "gifts of MS" lately.