Thursday, March 23, 2017

On Being Clumsy

Something happened the other day that I'm struggling to let go of. In many ways, it's not a very big deal and in many ways, it's funny. But, it's also bumming me out. I'll get to the story in a minute. I'm bummed out mostly because it made me notice for the first time in a while just how clumsy I am these days. By clumsy, I mostly mean that I drop things (my phone, meds, keys, glasses and dishes, etc.) A LOT, and I bump into things (walls, doorways, chairs, etc.) A LOT. Like multiple times a day, every day. This is another thing that has just slowly and steadily gotten worse over the years that I should have mentioned here when I talked about the "little things" that have been progressing.

For the most part, this isn't a big deal. Yes, I've broken quite a few dishes and glasses over the past few years. Yes, I've gotten a few bruises. Yes, I have shattered many a phone screen, and learned that the "life-proof" Otterbox cases are not up to the rigors of my life, apparently. But for the most part, none of this is a big deal. Stuff is replaceable and bruises heal. As of now, no serious injuries or massive expenses have come as a result of my clumsiness. And I know that everyone drops stuff sometimes and everyone bumps into things sometimes. And it's not a big deal.

I asked my mom yesterday, just making sure, "have I always been clumsy?" She assured me that I was not a clumsy person before, which I knew or thought I did. But I am clumsy now, without question. The rate of this stuff happening is just exponentially bigger. And that bums me out. Even though it's not really a big deal each little time I am "clumsy." The frequency with which these little times happen is a big deal. And it is definitely a big deal to know that this rate of clumsiness may well get worse, even a lot worse, over time.

First, the backstory - as you probably know, I play the horn. This is a brass instrument with a gaggle of tubes that you can remove to empty the instrument of condensation. It's colloquially referred to as "spit" but this isn't the time or place to explain to you why that's inaccurate. ;-) It's something I have done literally tens of thousands of times. It's something I have to do, dozens of times, every single time I play the instrument.

Now, the story. I was playing a symphony concert last weekend. Before the concert, the orchestra was warming up onstage. I played some notes and then, as I do before the start of any concert, started emptying out several of my slides. I took out a slide and then somehow, I didn't just drop it, but I sent it flying. It bounced off the riser I was sitting on and landed down on the ground in between my riser and the one in front of me. I was afraid it had gone under the riser and would be impossible to reach. My colleague/friend sitting next to me quickly got down and retrieved it for me. (Thanks, Denise!) At this point, it was just a fluke, a funny thing that could happen to anyone. I laughed about it and continuing emptying my horn. A few slides later, it happened again. This time, I sent it flying maybe 12 feet. It landed almost offstage. Again, this was so absurd that it was funny. I shared a laugh with the horn section. And while I was laughing genuinely, I was also somewhat mortified and upset.

I cannot tell you how glad I am that this happened before the concert started and not during the concert! I don't know what I would have done if this happened mid-performance. You better believe that every time I emptied my horn during the concert I did it slowly and with a death grip on the slide. Emptying my horn is something I typically do without thinking. No longer! When I play now (in public, anyway), I'll be paying a lot more attention and using a forceful grip and trying to make sure this doesn't happen again.

I literally have no idea how this actually happened. I don't think I had any numbness or a tremor in that hand that day to explain this. Then again, sometimes I'm not entirely consciously aware of symptoms like these. Dropping something is one thing, but unintentionally throwing something?

This slide-throwing story also hit me because of another absurd story from about a month ago. I was sitting on the couch using my laptop when I needed to get up to do something. In moving my laptop from my lap to a footstool I set my laptop on when I'm not using it...in moving it a distance of less than one foot...I didn't just drop my laptop, but I somehow threw it into the air. It landed awkwardly on its side but it didn't break, luckily. When this happened, it was so absurd as to be funny. It was baffling as to how it possibly could have happened but it didn't really make me pause and reflect like this. But when taken with the horn story, yikes.

So, I'm a clumsy person now. I drop things, I bump into things, and now I apparently throw things. So far, I only throw really expensive stuff, though. Which is great.

Any other throw-stuff klutzes out there, MS-related or otherwise?


Friday, March 17, 2017

This Month: March 2017, part 1

As usual, I'm not sure how we're already halfway through the month. Well, I made it through my decision to share this blog with more people unscathed. I've received several lovely comments and messages that have made me feel glad to have shared. 

The view from here: 
long article about service dogs for MS has me wanting one, but also not.

arm burrito...heat packs wrapped in a hot blanket...but veins still didn't want to cooperate

those scribbles are supposed to be my initials haha (written at an awkward angle with my non-dominant hand)

6 sticks later, I have an IV and it's Tysabri time!




planning to start making frittatas regularly again, but we'll see if I follow through.

lotsa bruises this month from attempts at starting an iv
out of the 6 sticks, 3 spots have bruises like this...I wonder why some bruise and some don't?


crazy high winds on this day.

cousin's skating show...this was my favorite part.

Qdoba veggie tacos!

backstage at the concert hall...but this is just good advice all the time!

just reached this page in the little journal/notebook my niece sent me.  
(I have been using it a lot and I am enjoying it!)


my 7th year as part of this research study on aging and quality of life for people with MS and a few other diseases.
it's 48 pages of questions about pain, fatigue, current physical abilities, finances, and mood.
I always find it pretty depressing to fill out, to see my honest answers to certain questions.

example. to be fair, it had been a particularly bad pain week when I filled this out.

farewell, pretty flowers.

loved this...but, seriously, I thought the chip reader was required to be everywhere by now

symphony week = yay but it creates need for a major rebalancing of my spoons.


MS Research I'm Excited About

Researchers Uncover Molecule Secreted by Immune Cells that Promotes Regeneration of Nerve-Insulating Myelin


Coming Soon:

  • those last 2 symptom series posts...really, they will eventually arrive
  • the long-awaited guest post from my friend Heather! (I've already read part of it...it's really happening, this is not a drill!)
  • my non-political thoughts on the health care bill and things certain politicians have said lately that broke my heart
  • a post about diet and MS


Let's all approach the weekend like the kids from that BBC interview:

via GIPHY

And hope it doesn't turn out like this:


via GIPHY

Thursday, March 9, 2017

On Awareness & Vulnerability

the FB picture I posted, with the NMSS frame
It's MS Awareness Week and I decided on a whim this year to put something up about it on Facebook because of it being my 10-year MS-anniversary this year. For the most part, I've avoided posting anything much about MS on any social media. I've avoided it for a few reasons. One, I'm a pretty private person. Two, I do the thing so many of us do and curate what I want to share. I share the good (pretty places I've been, cool things I'm doing professionally, etc.) and occasionally might share a link to something interesting/funny/inspiring on the web.

The image I want to present to the world is Kayla-swimming-with-dolphins and Kayla-teaching-in-Brazil and Kayla-looks-fabulous-or-adorably-ridiculous and not so much Kayla-peed-her-pants or Kayla-fell-down-again or Kayla-is-depressed-and-scared-and-worried or Kayla-doesn't-have-the-energy-to-shower-much-less-get-dressed-or-put-on-makeup-today. In a lot of ways, this isn't limited to FB-land. I'm not always all that open about my experiences with this stuff even with those close to me IRL. In part, it's because I don't want to be seen like that. I want to be the same old Kayla they know, not this sick person. I don't want to be pitied. I don't want to be a drag, a downer.

But MS is part of my life every single day. Even on the days when I can easily pass as a healthy person, I'm not. Every single day, I'm in pain. Every single day, I deal with overwhelming fatigue, brain fog, and a slew of relatively minor things like wonky balance and weird sensations. Those are the good days. There are also bad days, and weeks. And there is also all the annoying business of being chronically ill. Dealing with doctors and insurance companies and pharmacies and all of the related hassles. Stressing about how I'm going to pay that medical bill or whether my insurance company will approve this medication or anxiously waiting for that test result. I don't have the luxury of ever not thinking about this disease, so I enjoy the few spaces where I'm not sick-Kayla and where I'm just Kayla.

But, of course, the reality is that I'm both people. I'm the Kayla that does some cool things and I'm the Kayla that can't do cool things. I contain multitudes, as do we all. And the sick Kayla informs the rest of me. Part of why I jump at certain opportunities to go places and do things is because a big part of me worries or knows or believes that one day I won't be able to do those things.

I'm also sometimes cynical about the very concept of awareness and advocacy. Does it really make a difference? Despite this cynicism, I do believe that awareness is important. I know that I wish I had known something about this disease before I got it. And I know that I've been glad to learn about other people's health conditions (and just life experiences, in general, especially the hard things), as a way to understand them better and just a way to try to see the world from a perspective other than my own.

And for the people that know me or want to, the people that care, I know that I sometimes do them a disservice by letting them only see part of me. And I do myself a disservice as well. Yet, I still really struggle with this. I still want to be the Kayla unencumbered by the health crap and that's how I want to be seen.

Back to my FB post...I mentioned my blog and said that while I wouldn't just share the link publicly, I would share it with people who asked. I regretted doing this almost immediately, even before anyone said they wanted the link. It was scary. My nearest and dearest already know about and read the blog, but the idea of other people who know me (or knew me once and now know me only through that carefully curated social media presentation) was somewhat unsettling. I get pretty vulnerable on here sometimes and I'm not someone who is easily vulnerable in front of others. But despite my fears, I left it up, and people asked.

So...welcome, new readers!  If you want to dive in and read about my particular experience with the disease, check out some nitty gritty and occasionally embarrassing/TMI details in my symptoms series. I've technically been writing on here for 7 years, so there are over 200 posts. Some are mostly just pictures of sunsets, but there is plenty of detail about the things MS makes me think about as well. MS can be very lonely, and writing about it here sometimes helps alleviate the feeling. Comments don't hurt either ;-)

Wednesday, March 1, 2017

This Month: February 2017, part 2

Let's start with good news, the best news. If you missed my birthday blues post, I was in that point of medication-insurance-terror I know all too well. Med got approved, just in the nick of time!! I was pretty shocked that it happened as quickly as it did. I still live in great trepidation of the future of insurance and coverage and expect continual struggles with getting this and other drugs. But for now, I'm okay. Thanks to the loved ones who sent their support and offered their help. And, don't worry, my annual birthday blues didn't turn on to a full-on funk. I always tend somewhat toward the melancholic, but I'm mostly happy these days. I'll dive deep into mood soon, in one of the last posts in the symptoms series.

The view from here:


sparkling snow



INSANE weather month! this is NOT NORMAL for a MN Feb.
but it was awesome! soooooo warm, felt like spring, and the snow was GONE!
and then we had a THUNDERSTORM.
sadly, none of this lasted. scroll down to see the sad continuation of this story.

bday facetiming with a dog. :-D
I think this is her reaction to my insurance nightmare.


bday flowers

winter returned. :-(

ick.

oh well, it was nice while it lasted.

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 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

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.


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:


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*