Friday, March 31, 2017

This Month: March 2017, part 2

The view from here:

watching a livestream of my brother-in-law's US Navy Band Concert

Because nobunny knows Easter better than Cadbury.


my happy place. for real, I typically love my time in the MRI machine!
(well, usually. this was not my best time ever.)

first DQ of the season from the one specific DQ location that truly deserves the title of Queen

Springtime blooming, courtesy of my gardener extraordinaire friend

I got the brain model room again!
I was tickled to see the models are now cleaned and sanitized! ;-) 

that makes 3/12 for the year on private room versus cramped, loud, torture chamber spaces with all of the people

the infusion was fine until this rabbit floated into the room on a cloud

Coming Soon:

  • A small rant on 4 recent articles about MS that I found to be more than a tad upsetting.
  • An update on my MS generally, including my MRI results from this week which I found not as upsetting as those articles but not at all delightful.
  • Maybe maybe maybe one of those last 2 symptoms series posts.
  • A guest post from a friend!

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 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'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:


And hope it doesn't turn out like this:


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. :-(


oh well, it was nice while it lasted.