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. 

Monday, July 6, 2015

Magazine Monday: On Diet

a past CSA share from my awesome CSA farm
Diet and its potential role in causing/treating MS is a controversial topic, and one that tends to make me somewhat angry. Why? The various diets are generally presented as amazing miracle cures, yet there are always plenty of people who try the diet and it does nothing for them. Also, the core aspects of many of the popular diets are EXACTLY HOW I'VE ALWAYS EATEN! Yet, along came MS anyway. Perhaps if I ate a typical American crappy diet full of processed foods and lots of meat my MS would be much worse? Or maybe diet doesn't have the HUGE role in MS that some of the devotees of various diets would have us believe. Don't get me wrong - I certainly believe diet plays a significant role in our overall health and well being, I just question how much of an impact it can have on MS in particular.

The Fall 2014 issue of MS Focus featured interviews with 2 of the popular MS diet leaders. The Wahls Protocol, led by Dr. Terry Wahls comes with a pretty remarkable story. Dr. Wahls gave a TEDs talk about how her extensive research and then overhaul of her diet took her from having to use a zero-gravity chair and dealing with severe fatigue and brain fog and being considered secondary-progressive to pretty much regaining all of her abilities. Her diet is based on the Paleo diet, but goes beyond it by adding and carefully tracking 36 vitamins, minerals, fats, and antioxidants. The diet consists largely of leafy greens, sulfurous veggies, deeply pigmented foods, grass-fed meat, wild fish, and seaweed. The fact that she is a doctor and did so much extensive research and continues to test her diet extensively gives this diet more credence. However, I'm skeptical about its powers. That she could go from point A to point B just from eating this way (though she also did other things, like neuromuscular electrical stimulation) seems pretty unbelievable. Not that it happened for her, exactly, but just the idea that the diet would produce this same kind of effect in others. I'll continue to follow this, and I am curious to read her book, but I need some convincing to jump on this bandwagon. I've got the veggie side more than covered, but I eat almost no meat and I'm also not a fan of most fish and seaweed. I also eat whole grains, which aren't a part of her plan. I'd be willing to give this diet a try, if I am convinced by the book and/or further research.

The second diet discussed is Dr. John McDougall's diet. I'm pretty sure that he is not an MS patient himself. This diet is in many ways the opposite of the Wahls Protocol, in that starches (beans, corn, sweet potatoes, rice) are hugely important. The diet is generally vegetarian, and also involves eating plenty of veggies and some fruits. He's also done plenty of research and has led over 10,000 patients in it. His studies show significant positive impact on reduction of fatigue, in particular. There is no evidence to support the idea that this diet reduces disability or shows changes on MRI. This is the interview that really pissed me off, because this diet is pretty much exactly how I eat and have eaten since before I got MS. McDougall goes so far as to basically suggest that eating poorly causes MS, calling it a disease of food poisoning! I can't even begin to tell you how upset this statement makes me!! This diet is great, and good for your overall health, yes. That this diet causes and can treat and "reverse" MS is total BS.

P.S. Posts 2 days in a row? Woah, will this trend continue?! Time will tell.

Sunday, July 5, 2015

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!

Friday, March 13, 2015

One Year Ago: My Caribbean Cruise Adventure

According to my Timehop app, this week marks one year from my epic week cruising the Caribbean with my best friend, Heather. I've been meaning to write about this trip here ever since! So here is my long overdo cruise recap!

Some highlights:
  • many a long talk with my wise friend about all of the things
  • floating on a raft for hours in the Bahamas under a perfect sky!
  • kayaking in the Bahamas!
  • swimming with dolphins!!
  • chilling at the most amazing beach ever in Anguila with the softest white sands and the clearest aquamarine and delightfully warm waters!!
  • amazing food with amazing service on the boat
  • reading a novel on deck in a lounge chair
  • ping pong!
  • hiking in the rainforest in Puerto Rico
  • watching Heather surf on the boat (she was awesome!)
  • ice skating on the boat
  • towel animals in the room from housekeeping
  • sunsets!
Picture time!

our boat: Royal Caribbean's Freedom of the Seas

sting ray!

view from hammock

after somehow conquering the rainforest hike that was almost too much for me

yes, please.

one day it was REALLY windy

another new life experience: playing the slots! wasted $5
and will probably never do again, but glad I did it.

loved this colorful lady and her big bum.

The trip left me incredibly exhausted and with a super painful sunburn, but oh man was it all worth it. Memories of this week has sustained through yet another long tundra winter. Overall, it was an incredible experience. I didn't expect to love cruising as much as I did, and now I can't wait to do it again. Something I found myself reflecting on during the trip is that a cruise could be a pretty perfect vacation even if I wasn't doing so well physically. The boat was very accommodating for disability, and there would still be plenty to see and do. A bonus is that more able-bodied loved ones could still do more adventurous and demanding activities, even if my body kept me more on the sidelines. This particular trip itinerary was also pretty great for me, because there was an alternation of days at sea and days in awesome places. The days we had excursions on shore were long and action-packed. There would be no way I could do all I wanted if these days were all back to back. On the days we were at sea, I was able to sleep in and generally have a much easier day to recover. And there is plenty to do on the boat, so Heather was able to keep occupied and still have a good time while I was resting.