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 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.

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.

Reflecting on 2015

It's that time of year when we're supposed to reflect on the previous 364 days. Here's a look back at my year.

Health
It's been a fairly eventful year as far as my MS and general health go, though you wouldn't know it to look back through this sad and empty blog. (One resolution is to show up here more frequently in the new year.) The highlights:

• After 7+ years on Tysabri (a beautiful lifesaver of a drug that changed everything when my MS was wildly active and on a destructive path) and 6+ months on no drugs, I tried Gilenya.
• Around a month into Gilenya, I got a wicked case of Shingles. SHINGLES ARE THE WORST. More than 6 months after the Shingles, I still have scars, but luckily it's not an area of my body I display publicly! For me getting Shingles meant I was DONE with Gilenya.
• Then 3 months of nothing to wash the Gilenya out of my system. Had to decide between Aubagio, back on Tysabri, and Lemtrada. All options suck in their own ways.
• Started Aubagio. Currently on month 4. Had some pretty serious nausea for a few months and some definite changes to the whole bowel system. Nausea is gone. Now that the nausea is gone, I'm happy with taking a pill, but I'm not confident that the drug is working, because...
• Had an MRI a few weeks ago. More than 20 new lesions and at least 5 of the old lesions had grown. So that's not cool. AT ALL.
• Also, some new little symptoms, like serious tingling in one of the limbs that had never experienced that before (lasted a solid 24 hours, and then has continued to come and go ever since.) And some serious tingling in my face, another totally new thing. Also has continued to come and go.
• Bell's Palsy! Left-side facial paralysis that lasted around a month. Since I make part of my living as a professional brass musician, this is a huge deal. Couldn't play for a month, and it all happened right before the busy holiday musician schedule. Took 10 days of steroids and an antiviral, and luckily by the time rehearsals and gigs started, I could play again. I thought this was an MS thing, but it was probably a Shingles-related thing, but after seeing my MRI, doc said maybe it was an MS thing after all. Either way it sucked and I really hope to never experience it again. (I kind of loved it in a weird way though, like a party trick. I took more selfies than I ever have in my life.) 

My Lopsided Face

• Current plan is to continue Aubagio for at least a few more months, at which point I'll have a repeat MRI. If activity has to continued to increase, bye bye Aubagio. If I have a full-blown flare-up before that point, though, I will probably kick the blue pill to the curb then. After that? Probably back to Tysabri.
• Feel mighty ambivalent about my new MS doc, having also felt extremes of really liking her and really not. Still desperately miss my retired Neuro who I loved. 
• In non-MS health news, I finally acquired a PCP and had a physical for the first time in my adult life. Ha. And finally conquered my anemia issue. Also, got the stomach "flu" for the first time in over a decade and had a truly horrifying and awful 24 hours. 

Adventures

• Feburary 2015: Chicago + Michigan for time with family and BFF
• August 2015: Michigan with BFF, tried stand up paddleboarding. The standing up part didn't go so well, but I loved sit-down paddleboarding!
• September 2015: Arizona for a cousin's wedding
• October 2015: reuniting with friends at my 10-year (not sure how that number is real) college Homecoming festivities
• October 2015: Washington, DC for my sistar's super awesome wedding and to meet the coolest dog around, Nala the yellow lab!
• Fun with my fabulous niece a handful of times throughout the year.

my pretty sistar,
photo by my friend Holly

Nala!

SDPing

crafting with my niece

       

Professional

• Still teaching online University classes.
• Still playing my horn.
• Still rocking The Daily Quipple with an amazing team (mom + sistar, the artist)
• Still doing some web design and marketing work.
• Somewhat halfheartedly writing a novel or two.
• Started an Etsy shop (Elegami Papercrafts), and have made over 20 sales. Planning to actually try to market it and take it to the next level this next year.

Personal

• Only read 31 books, which for me is a sad number. 50/year should be the minimum I think. I'll do better next year! My favorite was probably On the Move by Oliver Sacks, but there were several winners.
• Had almost no social life which is mostly/usually exactly how I like it. But I do need to make a little more of an effort on occasion to interact with other human beings.

Goals/Plans/Resolutions for 2016

• 2 big MS-related projects are in the works. Stay tuned!
• Be slightly more physically active. Trying not to set a huge ambitious goal as it will almost certainly lead to failure.
• Read more books.
• Take both TDQ and Elegami Papercrafts to the next level.
• Post here more often! Should I set a specific goal in terms of frequency? I don't know. Often goals and I don't get along, but a general good intention kind of feeling also often leads nowhere. I set a new low this year with only 3 posts. I stop reading blogs that post so rarely, so I need to shape up!

Happy New Year! May it be healthy and happy and fulfilling. 

On Shingles

I don't think I've written all that much about my course of DMD treatments. Here's a quick run down. I was on Copaxone for about 6 months, then Tysabri for about 6 years, and I've just recently tried Gilenya.

Gilenya was great for awhile. My heart rate took about a month to normalize, but otherwise things were good. Taking a pill once a day was easy and there weren't really any side effects.

But then, 2 months in, shingles happened. Shingles! SHINGLES! AKA, the worst thing ever. Two entirely miserable weeks. About 3 days of EXCRUCIATING pain, exacerbated by things like moving and breathing. The rest was just varying levels of bad pain and some pretty extreme itching towards the end. I say the end, but it's been about a month now and I still have a few scabs left and pink scars that will hopefully eventually go away. I also occasionally still feel little sharp jabs of pain in the rash area, but nothing like it was before.

I'd love to share some pictures of my awesome rash, but I don't want to scar you. From extensive googling of it myself, I know that looking at other people's rashes can be horrifying and disgusting. However, I really enjoyed examining my own collection of blisters. I took lots of pictures, and they are awesome. But probably only to me!  I mean, they're awful, and they remind me of how awful it was, but still they are somehow awesome to look at. Since I'm kind, I'll just use this picture instead. When my niece heard that I had shingles, she said "You mean like those things on the roof of the house?" Yup.

credit: Randen Pederson

Because the Gilenya caused the shingles and because I really really really don't want to get shingles again, I'm currently on the market for a new DMD. I'm considering returning to Tysabri (which was like a miracle for me taking me from like 10 relapses a year to zero and which I was very happy with but ultimately the PML risk - even though so far I've been JC negative - is mighty scary especially with having already done it for 6 years) but am leaning towards Aubagio. Doc wants decision by tomorrow. Concerned about GI side effects and hair loss, as well as possible risks, but we'll see how it goes!