This Week in My Life: Week 4 of 2016

The view from here:

fruit in a pretty antique bowl

a pretty sunset out my front window

this time of year in the tundra, the sky is a bleak white-ish grey pretty much ALL OF THE TIME
so any amount of blue always makes me happy, even though it never lasts.

this is the normal color of the sky. it's depressing.

icicles can be pretty

What I read this week:

I finished Think Like a Freak. I certainly enjoyed it, but it's not as good as the others in the Freakanomics trilogy.

Started A Fireproof Home for the Bride, a work of historical fiction that takes place in a town I lived in for several years and in the overall region I still live in. Though set in the 50s, there are lots of landmarks and things I recognize and know well, which is kind of fun.

the perfect complement to a good book is a cup of Twinings Lemon Ginger tea
in my very favorite tea mug (a gift from a former student)

An update on the evil insurance company situation:

The PA still hasn't been approved. I spent my last 115 bucks (until I'm paid in a few days) to buy 4 days worth of the med. Four days worth! Ridiculous. That $115 will not be reimbursed even when the PA is ultimately approved. (I've decided to say when and not if, since that latter is unthinkable.) If it's not approved when I run out, I'll have to buy more which will likely mean having to decide which bills to not pay this month! I'm also going to try to live on 2 pills a day instead of 3 for a bit, to help me stretch things out. That should be enough to keep me from going into hardcore withdrawal, but will also mean my pain will skyrocket. Fun times. But at least I know that my insurance company "knows my medicine is important to me." End rant, for now.

TBT/FBF:

Winter Storm Jonas got me thinking about the time I got stranded in NYC with my college orchestra after our performance at Avery Fisher Hall - Lincoln Center. Jonas takes 2nd place on the all time list of top 10 biggest blizzards in NYC, while my 2003 blizzard makes the list in 8th place with 19.8 inches. We were a bunch of kids from the MN/ND tundra for whom a little snow and wind and cold was not a big deal (we sometimes have several blizzards a month), so we had a blast being "stuck" in the city for a few extra days. We got super cheap tickets to some Broadway shows, and just generally had a good time exploring the far-less-crowded-than-usual city. Times Square with no traffic was pretty sweet. I just dug out some pictures to scan from this snowy good time, since this was before the digital camera entered my life.

this is near Lincoln Center, a bad picture of someone cross-country skiing right down the middle of the road

I LOVE this picture

right in the heart of Times Square, with a snowplow the only vehicle in sight
and far fewer pedestrians than usual. it was awesome.

This Week in My Life: Week 3 of 2016

The view from here:

reading in front of the (electric) fireplace

my horn corner
awesome horn art by my sistar

and a closeup of my music shelf along with my literature/poetry/etc. shelf

there is a long window seat and large window in between these two

built-in bookshelves and a window seat are pretty much the best things ever in my opinion,
as my Dream Home Pinterest board clearly shows

Things I made this week:

a whole lot of origami
400+ small elephants & tiny elephants & sloths & modular origami & other things

What I read this week:

I finished The Man Who Mistook His Wife for a Hat, a good book by one of my favorite authors, though I feel like his later books are quite a bit better.

I started the third in the Freakanomics trilogy, Think Like a Freak. So far not as good as the other two - it's less focused on the fascinating stories - but rather is a kind of instructional manual for how to retrain your brain to think like they do with little stories peppered throughout.

How I've been feeling this week:

Still tingly. Super annoyed and frustrated. Forced to change insurance plans as of Jan 1st and now dealing with endless crap. Meds I've been on for 7+ years and meds I've only been on for months all have to go through the prior authorization process and/or are flat out not covered.  It's very much stressing me out, as the meds I cannot go even a day without are crazy expensive and the prior auth process often takes toooo long, based on past experience with other equally evil insurance companies.

And the letters they send about how they aren't going to cover things (at least not without a major fight), ends with "We know your medicine is important to you." Yes, clearly! Bite me.

TBT/FBF:

major sundog (meaning it was brrrrrr) 2 years ago today

awesome sunset 1 year ago

So far no cool outside pics today to continue the trend of cool January 22nd photos. We've got several hours left in the day, though, so it could happen.

This Week in My Life: Week 2 of 2016

The view from here:

evidence of frigidly cold temps, trying to appreciate the beauty anyway

shoveling at 5 degrees (feels like -13 degrees)
getting it done before the weekend's -10 to -25 forecast!

Out and about this week:

I had two leave-the-house social encounters in one week, almost a record for me!

played horn duets with a friend

Things I made this week:

a bad picture of homemade veggie pizza 

spinach artichoke frittata!

colored this card (a gift from my friend Gwen) and got it ready to send to my niece

What I read this week:

Finished Sweetwater Silver. I had a few issues with the writing, but overall I enjoyed this. A bit of a tearjerker, which I like. I could very much see this as a movie. Or even better, I would love to see a period piece PBS/BBC type dramatic series covering the whole WASP thing.

Started one of the only books by Oliver Sacks I haven't read, one of his first books, The Man Who Mistook His Wife for a Hat.


How I've been feeling this week:

Super, super tingly. Pins and needles, burning, somewhat numb. Both legs pretty much all the time but really bad at night, right hand and arm often enough, and occasionally my face. Sad emoji.

TBT/FBF:

a walk with my niece in 2007

with my sistar, on our way to my favorite place in the world, Garden of the Gods in 2010

Thanks for stopping by! See you next week, if not before.

This Week in My Life: Week 1 of 2016

To help push me to keep my kind-of-a-resolution to post here more often, I'm going to be bold and make a commitment to post at least once a week this year. The way I'm going to do it is by showing up weekly for a glimpse-into-my-life kind of post. This will also hopefully help me with another kind-of-a-resolution-though-I-haven't-verbalized-it-before-now to take more pictures. Certain members of my family will scoff when reading this, because some of them think I take WAY too many pictures! Yes, when I'm around people like my niece, I do go crazy with the camera, but in my day to day life I go in stretches of taking a ton of pictures, but also long stretches of taking hardly any pictures at all. Knowing I have a post "due" every week where I want to include at least a few pictures will hopefully help me make grabbing the camera more consistent. These posts won't be MS-related, necessarily, though since MS is a part of my life, I'm sure it will make some appearances.

The dismal, gloomy, how-many-more-months-of-gray-and-blah-can-I-take view this week:

out my front window

out my back window

Out and about this week:

Leaving the house is a somewhat rare occurrence for me. This week, I headed out just once, for a trip to the post office and grocery store. The horrible experience was made a little better by this spotting of one of my favorite things to see, a dog in the driver's seat:

makes me miss Nala the Yellow Lab (my sister's new pup)

Things I made this week:

Candy Wrapper Origami Dresses

caramelized mangoes over vanilla ice cream, topped with toasted coconut & cashews, and whipped topping
(an imaginary tropical respite from the dreary, cold, snow-filled life in the tundra)

What I read this week:

Catching up on some favorite MS blogs - Wheelchair Kamikaze, Multiple Sclerosis & Faith, Journey Man, and more.

Started a book I came to in an unusual way. I read this Huffington Post article about WASPs not being allowed burial at Arlington National Cemetery and was rather upset by it, and interested because I didn't really know much of anything about WASPs and their role in WW2. I scanned through the comments (something I rarely do) and some guy posted about how he had done a lot of research on this topic to write a novel. So I clicked through, saw I could read it free via Kindle Unlimited. I have read a few books via the Kindle app on my phone and on my Nook (though I MUCH prefer a real book) and decided to try this one. So I got a free month of Kindle Unlimited, and downloaded the book. Just started it, so no real opinion yet.

Started this book of short daily meditations about life with chronic pain, a Christmas gift from my sistar.






And now some TBT or technically FBF photo fun:

that time my niece and i had a blast "racing" at the airport

my 7th grade basketball "glory days" haha
also, that wasn't my best haircut, although I have kind of been thinking of trying bangs again...

See you next week!

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. 

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.

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!