Birthday Reflections

I'm writing this after midnight, so it's officially my birthday. I had good intentions of writing a 2016 year in review post but that never happened...so here is a look back at age 33 instead. My birthday always seems to trigger angsty, sad feelings, so I hope this doesn't get too dark.

This birthday will be spent, in large part, stressing/panicking about a med + insurance issue! This is the exact same story I wrote about here. I only got approved for one year then and now we're at that point again.  I have enough pills through Monday and not even close to the $1000 needed out-of-pocket for another month's worth and not really enough to buy even a week's worth. So please send all your thoughts/prayers/good vibrations/etc. my way or to the evil, evil insurance jerks. Because I truly cannot handle withdrawal from this med again. I have very little, if any, hope that this will be resolved by the time the drugs run out. Because these things ALWAYS move at a snail's pace. No matter how on top of it and proactive you are. :-(

MS
This year, I "celebrated" my 10 year anniversary with the disease.

It was by no means my worst year ever with this disease, but it also definitely wasn't the best. Though the flare-ups I had this year weren't completely devastating, they were bad enough. And the MRI results WERE completely devastating. On the positive side, the MS crap and awful MRIs meant going back on my beloved Tysabri. And things got much better pretty quickly. And so far, I remain JC-free. I worry about if/when I may become JC-positive, though, and how to make the decision about what to do then.

Overall, I feel like a lot of the "little" stuff is just ever so slowly moving in the wrong direction. Things like fatigue/lassitude/brain fog/mental clarity/coordination/balance. And recovery time after I push myself and do too much. It's like you don't necessarily notice how your appearance changes until you see a picture of yourself from X years ago. But when I reflect on a year ago or five years ago, it really feels like things are just worse. I suppose it can be explained by the slow and steady onslaught the disease has waged against my brain for a decade and especially the few really hard hits in the past two years. But it's a very depressing thing to reflect on. How much further down this path will I be in another year or five years?

This blog
I wrote 71 posts in 2016, my most prodigious year yet. Mostly the weekly, photo-heavy look at my life, but also 8 posts in my series about my MS symptoms

• Weakness
• Cognitive Challenges
• Pruritis
• Paresthesias
• Fatigue & Lassitude
• Trouble Walking
• Diplopia
• Bowel + Bladder Problems

And a few other random MS posts:

• My MS-related Thoughts on the Election :-(
• 10 Years Ago This Month...
• A Tribute to My Mom, Who Makes MS Easier
• An Ode to My Favorite Fictional President, Jed Bartlet (Who Has MS)
• Magazine Monday: Jamie-Lynn Sigler
• Texts from Chronic Pain
• Lyrica Insurance Saga: Sweet Resolution At Last, 

I made zero progress on two MS-related projects I hinted at over a year ago. :-( Maybe this year?

Analytics show that my most popular post during the past year was, naturally, the one about bathroom problems!

I'm hoping I didn't lose too many readers this year who come here for the MS stuff and didn't want to see so many sunset pictures. I need to find the balance.


Adventures

• a week in Michigan doing things like kayaking with my friend Heather
• niece time! visiting her, her visiting me, summer roadtrip-capped week o' fun
• a week in DC with my sister and my mom
• a fun (minus the initial flight nightmare) road trip adventure with my friend Heather from California to Minnesota
• time with friends: Gwen and a few others
• (mostly) weekly fun playing my horn with a few local friends - duets and trios and lots of talking and laughing
• taking 8 zillion pictures of amazing sunsets and spectacular clouds

Terrible Things

• the election and its aftermath
• continual major financial stressors
• big decisions that still need to be made that are ever so hard to make
• feeling like I accomplished pretty much nothing all year

Books
I only read 40 books in 2016, which is way too low of a number for me. :-( The breakdown was 29 fiction and 11 nonfiction. So far in 2017, I've read.....zero books. Excuse me while I slink off to hang my head in shame.

Professional

• Crossed the 100-sales mark in my Etsy shop and had several sales outside of Etsy. A lot of positives in the origami part of my "career" but I still haven't done half of the things I planned to do. 
• Huge, crappy changes in my job teaching online courses...as in, that's over.
• Main source of income these days is writing. (This is making it harder than ever to find the time/energy/brainpower to write here.) It's often fun, interesting work, but it's also stressful to have to reach a certain quota of work to get by. :-\
• Doing a fair amount of web work as well, and in theory, I plan to ramp up that business to offset some of the writing.
• Still getting paid to play my horn periodically. Wish it was more often, but I'm happy that it's still happening at all. Also loving just playing for fun with friends regularly.
• The Daily Quipple is still chugging along.

Overall Reflections

It's been a pretty stressful year overall, and I don't necessarily see that letting up anytime soon. 

I feel like I've barely accomplished anything, even though I know several of my not at all objective readers will try to make the case that I've done a lot. I'm struggling not just with my productivity and accomplishments, but also considering whether I've been a good friend/daughter/sister/aunt/blogger this year. In the midst of my annual birthday funk, I'd say the answer is no. Those same people will argue this point with me as well, but I just feel like I could have and should have been better. I can say with certainty that I haven't been a very good friend to myself.

Next Year

I'm typically the kind of person that if I set an actual goal or resolution, that almost guarantees that I will not follow through on it. Last year, I said I was going to write on here weekly and I stuck to that. And now I'm kinda sorta committed to writing on here at least a few times a month this year. 

My other goals/resolutions mostly fizzled or stayed stagnant last year, so I'm not making many this year.

The only other goal I've committed to this year is to write a letter to my niece every single week.

Anyway, see ya later 33. Hope you're good to me, 34.

I have the birthday funk, but luckily I have this cure-all remedy:

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. 

On Exercise

I was a very athletic kid. Most sports came very naturally to me and I loved them all. I was always outside shooting hoops or riding bike or playing something or the other with neighborhood kids. I played basketball at school through junior high and stopped playing only because I decided to focus more on music. However, I continued to be fairly active. In college, I could often be found playing frisbee. I also got into yoga and weight lifting.

My current, post-MS activity and exercise levels are very much lacking. A few years ago I joined a gym and had a very dedicated schedule. I worked out several times a week and pretty intensely. Then I had a neuro appointment, where I complained that my pain had been consistently really bad for quite a while. It took about two seconds for the doc to figure out why - the exercise. It's a troubling catch 22. Exercise is good for overall health and helps certain MS-related issues like energy levels and constipation. BUT for those of us with the delight of nerve pain, it very much exacerbates the problem. Also, exercising too intensely can cause overheating issues which can make all symptoms worse AND can make fatigue significantly worse. After that appointment, I pretty much stopped working out totally.

I used to LOVE that post-workout feeling after a really hard, intense, vigorous workout. It was hard work and I was worn out, but somehow also totally energized and felt incredible. Endorphins are awesome. This no longer happens, ever. If I work out at that intense, vigorous level that used to leave me feeling amazing, strong, and invincible, I now feel completely and utterly defeated, a limp noodle unable to even imagine doing any physical activity ever again. PLUS I'm in overwhelming, agonizing pain.

So, I'm in a tough place. I want to and intend to work out at a moderate level regularly, but I hardly ever do. I know that I need the various positive effects of the exercise BUT I am so terrified of making my pain worse. It's already bad enough too often. And I would love to experience an energy boost from working out, but I'm afraid of not finding the magic spot where I get this boost and instead get the total system shutdown effect.

in the pool with my niece and our hippo friend

My doc recommended getting in the pool as the very best thing I could do. Too bad I'm not a swimmer. However, I do currently live at a place with a pool and I have used it and find I can get a decent workout without exacerbating my problems too much. It's still not my natural habitat, though. I need to make it a consistent, regular habit to get in the pool. I also need to consistently lift weights and do yoga. A friend and I just started an accountability program where we check in with each other once a week about our progress in certain areas. For me, it's working out. My current weekly goal is lifting weights at least once a week and some form of cardio at least twice a week. This first week I only swam once, so there is definite room for improvement.

Any tips on how to make exercise a positive part of your life?

Resolutions, part 2

Oof, getting around to writing this part 2 has taken me longer than planned! A past self would have used this complete-and-total-failure-at-blogging-and-life as an excuse to give up the whole blogging enterprise altogether, but (as you well know from reading this and this) I am choosing to no longer let my perfectionist all-or-nothing tendencies hold me back. So here we are - later than planned/hoped, but better than never - back at it for the promised part two.

The other resolutions-themed stuff I want to talk about is largely a reaction to the January email newsletter from one of my favorite MS bloggers, Kate Wolfe-Jenson of Dancing With Monsters. I adore Wolfe-Jenson's creative approach to life with MS. She uses creativity as positive fuel in the energy-depleting world of chronic illness. (She's even authored a book on the subject, Dancing With Monsters: Chronic Illness as Creative Transformation, which I've not yet read but will certainly review here when I do!)

Back to resolutions. Her January newsletter takes a creative approach to the subject, with wonderful results.  Basically, she explores the meaning of the word and reminds us that resolution has other meanings, including two from the arts world.  In visual arts, especially in the digital world, resolution is about the number of pixels that make up an image. In digital photography, for example, the number of pixels per inch has a major impact on the clarity of the image. So, a great analogy can be that resolutions are (or should be) ways to bring focus and clarity to your life. Resolutions that don't do this will no longer make my list.

My niece and I late on Christmas Eve, shown here with much lower resolution than previously.
This resolution is probably a more accurate reflection of how tired we were at this point!

As a musician, I appreciate even more her second refreshing look at the word resolution. All college music majors spend quite a bit of time in theory courses learning about resolution, or the process of moving from dissonance to consonance. Anyone with even a slightly developed ear instantly recognizes when a chord doesn't resolve, or doesn't resolve well. The reaction - even in those who don't really know why they're having such a reaction - is one of tension. A dissonant chord that doesn't resolve makes you feel tense and there is nothing quite so ahhhh-inducing as a beautifully resolved chord.  So in the life analogy, another great way to look at resolutions: ways to reduce tension in your life.  Old-me resolutions have tended to be so ambitious and rigid and specific (and impossible to ever meet for long) that they added great tension in my life.  New-me is going for the ahhhh-inducing tension reducers!

So, a big thanks to Kate Wolfe-Jenson for this refreshing look at the word.  May all your resolutions (New Year's or otherwise) take a cue from the arts world and bring you less tension and more clarity!

Resolutions, part 1

Earlier this week, I resolved to have a New Year's Resolutions post up by the 1st, so it seems like I've already started my year off with a failure!  Or not...because one of my biggest resolutions this year is to let go of my plans of perfection (like I previously discussed in relation to blogging) and follow through anyway.  A major pattern in my life has been not doing things I want to do and plan to do because I can't do them in the "perfect" way I've envisioned and planned, so I do nothing. Or I give up and stop anything I've started when I fall short of the perfect.  So this year, my only official resolution is to push past my ideas of perfection and just do it anyway, imperfectly.

This will play out in many unofficial resolutions, which I'm not writing down and formally committing to (because that would be part of the old pattern of perfection and setting unobtainable goals).  For example, health.  I'd like to improve here in several areas. (Wouldn't we all?) Discontent about the areas of my health that I can't control has led me to not do much about all the areas that I can control. I need to take more responsibility for my health.  There are the usual stereotypical resolution areas like getting fitter, eating better, losing weight, etc. and these are all areas I can improve on.  I'd also like to become a more empowered patient and get more involved with the MS community.

The idea is that I've known all of the little things that I want to be doing towards these goals for a long time, but I just don't do them, often because of my paralyzing drive for perfection.  So, I plan to try to act on, rather than just think about doing these things, when they come up.  I plan to look my need for perfection in the face and tell it that I'm not going to let it hold me back and just move forward anyway.  Perhaps a little paradoxically, my primary goal this year is not to hit the target, but to keep releasing arrows in that direction.

Expect another post on the subject of resolutions later, as I have more to say on the subject that I think deserves its own post.