This Month: April 2017, Part 1

Relapse Update
In case you missed this post last week, I'm having an MS relapse/exacerbation/flare-up. Yay. Since I wrote that, things got quite a bit worse. Namely, my right leg joined BFF left leg and became super weak. Also, the nerve pain I have all the time (to varying degrees of intensity) in my feet and below-the-knees legs became REALLY BAD and was now affecting ALL of my legs. Then, some good news. The spasticity and the spasticity-specific pain improved significantly, though not fully. And the weakness has been improving somewhat as well, though not fully. Walking is probably 90% better, though I'm still walking pretty slowly. The full-leg nerve pain is still extremely bad much of the time, making it very hard to concentrate. In sum, things got worse, then some things got much better, but some things are still quite bad. It's been just over a week now. MRIs are tomorrow.

The improvements (despite the continued issues) are a HUGE relief as I start symphony rehearsals this week. I'll have to carefully modulate my meds centered around rehearsals and performances for an optimal blend of pain relief and mental focus. Hopefully, that will get me through. Hopefully, things will also continue to improve so that my pain goes back to "normal" levels.

The view from here:

Facetiming with someone with even weirder sleep positions than me.

more springtime cheer courtesy of my friend Ramona's garden

Message from my niece that I DO NOT SUPPORT, having once gone
in the ditch from a last-week-of-April snowstorm 6ish years ago.

Anticipating April giving birth.

flowers brought by a sweet friend upon news of the relapse.
they brought much-needed cheer to the room during an awful week.

imposter spotted ;-)

Finally!

Becoming Immune to Bad Medical News...Or Not

Originally, this post was going to be about how getting bad medical news doesn't really faze me anymore. But in a matter of days, that statement became less true.

Last week, I had an MRI and was expecting good results since I wasn't really experiencing any new or worsening symptoms. (Other than the throwing stuff thing, I guess.) The MRI wasn't terrible but it also wasn't good. There were 5-6 new lesions (or maybe more but they just got a new more detailed machine so some of the maybe-new lesions might have just been old ones that the other machine wasn't good enough to pick up). This is not normal for me while on Tysabri. When off it, I have allllll kinds of new lesions and the old ones get bigger but when on it, my MRIs are usually great. 

This was bummer news (I've had more than one MRI with 25+ new lesions, so 5-6 felt like no biggie) but I didn't get upset hearing it. In fact, I spent the entire rest of the day kicking myself for not responding to the doctor with some sweet (or awful) brain puns. Like:

Doc: So, there's 2 new lesions right here in the pons.

Me, in reality: Okay.

Wish I'd said: Okay, could you maybe pontificate about that a bit?

Doc: Another new lesion here in the right frontal lobe.

Me, in reality: Okay.

Wish I'd said: Right, I'd lobe it if you could front me some information about what that means.

Doc: And a couple new ones here in the left parietal lobes.

Me, in reality: Okay.

Wish I'd said: (I couldn't come up with one here. Any ideas?)

Now, none of those are great puns. [Please share brain anatomy puns in the comments, for my future use!] But, instead of bumming out all day that my disease is progressing and my miracle drug is maybe not working as well as it used to, I was doing this playful daydream dance thinking of brain puns.

wanted: brain puns!

I can take bad news in stride. I've had a lot of it in the last decade plus. Really terrible MRI reports, drugs not working at all, awful new symptoms, awful side effects, etc. I roll with the punches. I've had very little strong emotional reaction to any health stuff, really, for a long time. Even when I was first diagnosed, there were few tears. The few times I have really lost it, crying and getting angry, have been related to the financial side of being chronically ill like fighting with insurance companies and hospital billing offices and getting denied and things like that. But the disease itself, I'm mostly pretty chill about it all. [Technically, I did have a serious cry earlier this year but that's a story I'll tell in another post that is currently half-written.]

In talking with some friends recently, I said that one of the things this disease has taught me is that I'm okay and I'll be okay no matter what happens. That's not to say I'll be happy if I have new symptoms or further disability or any of that, but I'll be okay. I've experienced not being able to walk. I've experienced incontinence. I've handled that and I can handle whatever else. I'll still be okay. Even with the things that scare me the most that I know could happen with this disease, I'll be okay.

I do stand by that. I will be okay. But...

A few days later, some new stuff started. It's now been 48+ hours later and the new stuff is holding steady and getting a bit worse. One symptom isn't new but has returned with a vengeance: major weakness in my left leg. Another symptom is very new: spasticity and pain in my hip flexors and hamstrings. This is a painful, tight, sore feeling and it is impacting my walking. I'm walking stiffly and I'm told I'm stomping. I haven't tried walking super long distances, only around my house. It's not like I'm tripping or falling or feeling unsafe. (My mom is very worried about tripping and falling and not being safe on stairs and the like, but she worries about that stuff for me already so it's just more urgent right now.) Walking is just weird. It's something I have to think about. It's no longer an unconscious activity that my body just knows how to do. 

In other words, I'm having a flare-up/relapse/exacerbation/whatever-you-want-to-call it. This is literally my first ever exacerbation while on Tysabri. Before the drug, I had a dozen or more. Then immediately once I started Tysabri I experienced beautiful disease stability. 7 years of it! Some of the damage was permanent and I dealt with those symptoms, but the disease was stable and there were no new symptoms. Then, off the drug and tried 2 new drugs (Gilenya and Aubagio) and they were both disasters for me. Exacerbations and TONS of new awful disease activity. Then, back on Tysabri and everything cleared up right away. The MRI was perfect again. And almost a year of no new stuff. But now here we are.

And I am okay. But also I'm not at all okay. I sobbed today, a full-on ugly cry.That's something I mostly only do when a beloved tv character dies or a true story sports movie coach gives an inspiring speech or something tragic or beautiful happens in a book. But today, I sobbed.

I cried because the timing for this is beyond awful. I have a big (physically and mentally demanding) concert next week with lots of rehearsals and driving. It's a concert I've been looking forward to for a long time and I refuse to not do it. But...I worry about what if things get worse? What if my left arm gets weak again or what if my face is numb and I can't play? 

I cried because I'm worried that my wonder drug isn't working for me anymore. And I don't like the sounds of any of my few remaining options. And I don't want to have to make that kind of impossible decision.

I cried because this trouble with my walking made me realize once again that I've taken for granted the beautiful, precious gift that walking without thought is. It's something I reflected on a lot in the past when I had walking issues (admittedly far worse than what I'm experiencing right now) and I vowed to always feel grateful for the gift of walking. And I haven't been taking advantage of using my body in the ways it could be used of late. I haven't been taking walks or done much other physical activity. There are plenty of good reasons why I haven't done much of this, namely the fact that walking and standing and exertion, without fail, make my pain significantly worse. But still, I enjoy walking and I want to use my body when I can! Why haven't I been? Why haven't I been hiking in Colorado (my favorite activity in my favorite place!) in over 5 years? What if I missed my last window of being able to do things like that?

I cried because I already have pain every single day, sometimes mild and sometimes severe. Adding more pain? Constant pain is soul-crushing but I eventually learned to be okay with pain, especially after finding ways to manage it. But adding a new, different layer to the pain is depressing and overwhelming. And soul-crushing.

I cried because I worry that I might be on the cusp of transitioning to the progressive form of the disease where things don't get better in between exacerbations. And it's just a decline.

I cried because I guess I'm not quite as immune to bad news as I thought.

But I wiped my tears. And I'm okay. I can handle this. I can hope for the best. I can feel gratitude for what I can still do. I can promise myself to use my body as best I can when I can in a way that I won't regret not doing in the future.

I have to get a new MRI (brain + cervical spine + thoracic spine...I only did brain last week and these symptoms are probably suggestive of spinal lesions) and the soonest I could get in is next week. So if I were to do steroids, I'd have to wait until after that. Which is in the middle of symphony week. And there's no way I could do steroids during that. It's a rock-and-a-hard-place situation.

Okay, I'm going to end this long ramble of a post now. I'm okay and I'm not okay...but I'll be okay.

Friends, if you can walk easily and without thought, please take a moment to feel grateful and to celebrate it for the beautiful and precious thing that it is. And if you can run, bike, hike, dance, etc., please do it for those of us who can't. And celebrate the gift of all that your body can do.

❤️

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.

mmmmm.

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
YAY SPRING!

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

Tysabri time. PRIVATE ROOM AGAIN!
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!

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?

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

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 ;-)

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.