Thursday, December 31, 2015

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.

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. 
  • 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

crafting with my niece

  • 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.
  • 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.