Friday, February 24, 2017

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 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. :-(

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

And a few other random MS posts:

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.


  • 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

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 books. Excuse me while I slink off to hang my head in shame.


  • 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 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:

Friday, February 17, 2017

This Month: February 2017, part 1

Somehow it is already halfway through another month! And I've done zero posts. :-(

Sorry, readers. I really do have some great MS posts planned. It's just finding the time to get them done.

Some MS content from others I enjoyed this month:

Correlation Between MS and Harry Potter Characters is Pure Magic [I don't think I knew that JK Rowling's mom had MS.]

Good Guy Ted Cruz Congratulated a Woman on Having Multiple Sclerosis [Obviously, I didn't "enjoy" this one. In trying to give him the benefit of the doubt, what he really meant was probably something like "good for you, fighting the good fight, and looking 'so good'" which is potentially annoying and patronizing in and of itself, but the way he said it was SO AWFUL. IT'S HIS JOB TO TALK IN PUBLIC. IN THIS CASE ABOUT HEALTHCARE WITH REAL PEOPLE. HE HAD TO KNOW THERE WOULD BE PEOPLE WITH STORIES LIKE THIS AT A TOWN HALL ON THIS ISSUE. HE SHOULD HAVE BEEN PREPARED TO HANDLE IT BETTER!!!!!!!!!!!!!]

10 Things I'd Like Help With on the Bad Days of Multiple Sclerosis

The view from here:

opera fun

I've been playing Words With Friends lately. This was a TERRIBLE letter selection!

Favorite card I've made, a punny collaboration with my sistar from The Daily Quipple.

What I think every time I see this sign at the post office.

Horn love.

Best ever pop-up valentine's card from occasional MS Muse commenter "anonymous." ;-)

Mood lighting on V-Day with my one true love in the opera pit.

That's a sunrise, you guys! Something I am only awake for a few times a year.
I thought this frost in the foreground was cool.

All the heart eyes emojis in the world!!

Horn love with friends.

Sunday, February 5, 2017

This Month: January 2017, part 2

I know that this post should technically be titled Last Month, but just roll with it. The delay is due to it being a very difficult and busy few weeks.

My grandfather passed away at age 86. I had my first ever cup of coffee with him. I will always think of him when I eat a green onion. The funeral and time with family led to reflection not just on my grandpa, but also on my grandma who died in 1996. She had a wonderful sense of humor. They are both dearly missed.

me and Grandpa in 1988

The view from here:

These pictures are chronologically out of order, but I'm not going to take the time to fix it.

Fun to connect with college friends.

When you play this spot just right, a rainbow appears!

Origami sloth Valentine's cards are selling like hotcakes in my Etsy shop.

My sister made a delicious pasta dish while she was home.
This picture tells me she could totally pursue a career as a hand model.

My sister and I played together at the funeral.
It was fun to have instruments with for this obvious photo opportunity at the airport.

Tysabri time.

Some of the cousins. It looks like my arm is REALLY long in this shot.

My 16-year-old cousin did my makeup.

We always used to do spa days together growing up, so it was fun to do face masks together again.

A piece from The Onion a few weeks ago that really made me laugh through the tears of anxiety: GOP Promises Americans Will Be Able To Keep Current Medical Conditions If Obamacare Repealed
“Whatever health problem you have right now, you will absolutely still be allowed to continue having it once Obamacare has been dismantled,” said House Speaker Paul Ryan, adding that the repeal of the landmark healthcare legislation would in no way prevent patients from maintaining their existing medical issues or even adding to their afflictions. 

Hopefully, you'll be getting the penultimate symptoms series post this week. *fingers crossed*