Saturday, July 30, 2016

This Week in My Life: Week 30 of 2016

Wow, I've kept this weekly post thing up for 30 weeks now. I've smoked last year with only 4 posts in all of 2015, and I'm on track to beat my record of 59 posts in a year from 2011. Thanks to those of you following along. The 2nd in my series of posts on my MS symptoms went up yesterday.

The view from here:

worst ever experience at the Walgreens pharmacy drive-through this week.
45 minutes of waiting...getting to the window only to be told to drive around to the back of the line while they finished getting my med ready (even though their website told me it was already ready!), only to do so and just be told the same thing, and then finally one time it's "ready" but they ask did I just want the 15? (for my 90ct script) to which I said huh? no. and they were like, oh ok, so you want the entire prescription to be filled? our bad. just drive around to the back of the line and it'll be ready when you come back through. GRRR. it appeared to be new employees that day, but still. WOW.

Blue skies and raindrops.

This was a really great cloud day.

Sunflower season.

Great clouds and farmland. 

What I made this week:

Spicy Asian flavors Bok Choy on the grill

Bruschetta with basil from my little herb garden.

What I read this week:

Another winner from BuzzFeed: 15 Words That Mean Something Totally Different When You Have A Chronic Illness

Woman With MS Makes It Her Mission To Run A Marathon On Every Continent I was seeing this story shared a lot online, and at first I was kind of annoyed. I feel like stories of people doing incredible things that many/most people with MS could never do can be inspiring, but it can also be damaging to MS visibility and awareness because people will think/assume that MS must not be that bad if people can run marathons and climb Everest and so on. They will assume that all people with MS must be the happy/healthy/athletic people we see in the magazine ads for MS drugs. And for all of us with a very different picture of what MS looks like and for whom it limits at least some of what we can do, it just makes it feel more isolating. However, when I actually read this article (rather than just feeling slightly annoyed and ignoring it whenever I saw it pop up), it was totally inspiring specifically because this woman really does have MS problems that affect her and her ability to run, but she's doing it anyway.

I really enjoyed this post from Damsel in a Dress (not an MS blog, but the author has Lupus and was told it was probably MS before finally being diagnosed...and it's a very relatable blog for all chronic illnesses): HOW TO USE THE INTERNET WHEN YOUR FRIEND HAS A CHRONIC ILLNESS

Friday, July 29, 2016

My MS Symptoms Top 10 Countdown - #9 Diplopia

Last week I wrote extensively about my MS-related bathroom troubles, but today will be a shorter post with no chance of TMI. 

Vision problems are probably one of the most common MS symptoms, and they're often the first symptoms people experience. Not so for me. In fact, I've never *knock on wood* experienced Optic Neuritis, the eye problem most common to MS. The only vision-related MS symptom I've experienced is diplopia, a fun name that means double vision.

Kind of what the world looks like with diplopia.
The diplopia popped up during that first awful year where all kinds of symptoms came to the party of my life, uninvited, and kept coming back even after I'd shown them the door. Like pretty much every symptom I've experienced in these past 10 years, my first reaction to a new symptom is to question whether it's really happening, or rather I ask myself if it hasn't really always been that way. I know that sounds ridiculous, but that's how I tend to roll.

Double vision is not painful, but it is incredibly annoying and it can be very dangerous. I'm sorry to admit that I did drive a few times while I was experiencing double vision. Just a few short trips around town, and I pretty much kept one eye shut which eliminates the seeing double. While a passenger in a car on the interstate, it looked like there was constantly a new off or on ramp, a diagonal lane always right there. It was very discombobulating and it could be disastrous to drive like that. Don't be like me and drive when seeing double!

I read like most people breathe, and reading was obviously impacted by diplopia. Again, shutting one eye fixed it, but that puts more strain on the one eye and wasn't sustainable for long periods. Now that I think of it, I should have just gone full pirate and gotten an eye patch to wear during this period.

The diplopia went away along with other symptoms when the steroids kicked in. It does sometimes reappear a bit when I am extremely tired (as so many of my MS symptoms do), like when staying up late reading for too long. When every line of text has a double floating above it, I know I have to shut the book. 

Of all of the more than 15 MS symptoms I've experienced, diplopia was my "favorite." It was annoying, but compared to all the other symptoms, this one had the least damaging impact on my life. 

Saturday, July 23, 2016

This Week in my Life: Week 29 of 2016

Coincidentally, my brother emailed me a
link to this game this week.  I'm obviously
expecting to receive it for Christmas this year. ;-)

In case you missed it, I finally started my promised series about the MS symptoms I've experienced over the last 10 years. Yesterday, I dove right in with a post on bowel + bladder problems. I feel a little vulnerable, because while I've shared a lot of this with the people closest to me, some of this I've never really shared before except with my mom. (Plus, it's just a subject matter you don't just generally talk about in public!) This is the kind of thing I'm often looking to read from others, though, so I hope sharing my story helps both people with MS and those who love them.

Stay tuned for future posts on everything from diplopia to trouble walking to cognitive problems.

The view from here:

Backyard lilies starting to bloom.

Getting some veggies at a local farm.

Country scenes. Ahhh.

Horn quartet rehearsal in a big beautiful church with great acoustics.

Reading under an umbrella in my backyard.

The MS TRAM route went right by my house.
There were hundreds of riders throughout the day, but I only noticed
a handful here and there when I happened to be walking by a window.

Just found this sweet little note in the middle of my book log notebook. Made my day.

What I read this week:

Invisible by Carla Buckley

Friday, July 22, 2016

My MS Symptoms Top 10 Countdown - #10 Bowel + Bladder Fun

This is the first post in a series of 10 posts about the symptoms I've experienced during my 10 years with MS. This is me pulling back the curtain to show you what MS looks like for one particular person with MS. This disease can be drastically different from person to person, but this is what it's like for me.

I'm not going to go in any particular order in this countdown, but I figured I might as well start with the sexiest of all symptoms: bowel and bladder problems. I'll try not to get too graphic here. To quote Tripping on Air: "There is a fine line between TMI and NEI (not enough information). It’s hard to talk about this stuff, so we don’t, and then it’s lonelier and scarier than it needs to be."

My first definite MS symptom was constipation. Like, pretty major constipation. I have for most of my life eaten a very healthy, high fiber, mostly vegetarian diet. As a result, I'd usually been fairly regular. But then, I wasn't. It was really bad, for quite a stretch of time. I was crabby and annoyed for weeks. It was the first thing in my mind when I woke up each morning, and it was on my mind constantly throughout the day. I was miserable. Fiber, laxatives, and the like didn't really do much at all. If anything, they made it worse. I was very close to going to the doctor about the constipation. If you know me, you know that it would have to be extremely bad for me to even consider going to the doctor, especially for something so personal/awkward/uncomfortable to talk about. Luckily, other symptoms joined the party so when I finally did go to the doctor, poop wasn't the first thing I talked about.

At my first awful appointment (after months of my right leg being numb, I fell down and couldn't get up...more on this in a future post in this series), the doctor did ask me about the state of my bowel and bladder. I admitted to the constipation. The doctor suggested I eat some fruit. She also suggested that my fall was probably due to tripping over my own feet, that I was very depressed and didn't want to be there (in grad school) and that I should take Tylenol.  So, super helpful overall! Despite how that entire appointment made me feel, though, it was the clue I needed. Why had she asked about my bowel/bladder when I was talking about numbness and falling? Ten minutes on Google (looking for what could be behind both numbness AND constipation) and I finally pretty much knew for sure what was going on: MS.

The next few years were challenging in all kinds of way, but constipation remained faithfully by my side. There were some periods where the situation got a little better, but it always came back. In fact, it got significantly worse when medications came into the mix. Years of trial and error to find the right drugs for my chronic nerve pain (more about that coming in a future post in this series) only made the bowel situation worse. A lot worse. The drugs I was trying and the ones I ultimately settled on all had constipation as a major side effect.

My worst memory of this time period was my 2nd Thanksgiving since the diagnosis. A day when you gather with loved ones and eat a lot of good food. Well, let's just say I was in a state of severe pain and discomfort and the idea of adding more food to my system sounded impossible and awful. I was beyond miserable.

I started to dream (or have nightmares, as the case may be) about pooping. All the time, like every night. It was on my mind more often than not when awake as well. Good times, all around. These dreams continued for years, and I still occasionally have them now.

During all this struggle, I learned that I had to develop a "bowel routine." This also took some trial and error, but having a routine became absolutely vital. It still is to this day, though perhaps not as important as it once was. For me, the only shot I have at going #2 is in the morning, after breakfast. Get up, drink something hot (especially coffee, but I'd usually drink coffee plus LOTS of tea), eat something, and sit. Being active, doing anything that couldn't be done while sitting would mean my chance for the day was blown. When my schedule required me to be up and out of the house in the morning, I would be pretty upset about it, because it meant I would be missing out on going to the bathroom. If I missed one day, my chances of being able to go the next day were very low as well, leading to an awful snowball effect. My life came to completely revolve around my bowel routine. I became almost militant about it. The exact steps in my routine have changed a bit over the years, as I've accidentally stumbled across something that works better, or realized that something wasn't really necessary. There are some more details to my bowel habits that I won't go into here, since I promised not be too graphic.

One of the worst things about my constipation saga has been that I often can't feel when I have to go, or when I will be able to go. I wasn't getting the physical clues that people normally get. I learned other ways of knowing when it was time. I've regained some of this awareness physically over the years, but it still isn't a fully functioning system or back to "normal" by any means.

When I took Aubagio for a few months earlier this year, I very much experienced the nausea/diarrhea side effects. It wasn't really true diarrhea, but it was a drastic change, and for the better. Going #2 super regularly (like even more than once a day) and with much more ease was a beautiful side effect. I stopped Aubagio because it realllllly wasn't working for me at all, and to be honest, I was a little sad about losing out on this side effect. Weirdly, though, it hasn't entirely gone away. It's definitely not quite what it was, but my bowels have never gone back to my awful baseline either. A bowel routine is still vital for me, and going first thing in the day is still pretty much my only shot most days, but post-Aubagio, it's generally been easier.

I'm pretty sure that's more than enough talk about poo. Moving right along to urination! Bladder troubles also joined me pretty early in my MS journey. After that first awful doctor's appointment where they pretty much said nothing was wrong but also were very clearly thinking it was maybe MS based on the questions they asked me, things very quickly nosedived. Lots of things got worse, and lots of new symptoms joined the party.

Suddenly I had to pee CONSTANTLY. I'd go to the bathroom, and not even five minutes later I would have to go again. And quickly. I was peeing constantly. Since I was also having trouble walking, hightailing it the bathroom as fast as possible all the time was a bit of a comedy of errors. Time passes, I get diagnosed, I go on steroids, symptoms mostly disappear but then come roaring back, and the cycle of steroids and relapses goes round and round. The bladder problems were usually part of the relapse package. My mom and I still laugh about the time we drove from Michigan to Minnesota to see an MS specialist and had to stop at literally every single rest stop or gas station the entire drive. It usually takes 12 hours, but I'm sure it took quite a bit longer with all those stops!

It wasn't just frequency and urgency, though. I also had major issues with hesitation. I would feel like I reallllly had to go, but then it wouldn't come out. I would just sit there trying, really intensely concentrating. It would usually eventually start in a weak little trickle and then stop and maybe start again. I eventually was taught the trick to gently palpate the bladder, and this would usually make it happen when combined with the intense concentration.

And then there was the not making it in time part. This was a symptom I found more horrifying than any other when I read about MS. It hasn't happened to me a lot, but it has happened. I mentioned urgency before, and this urgency is often very sudden. Like all of a sudden, you have to go, and it has to be NOW. I usually made it in time. There were a handful of times, though, where I didn't exactly. I didn't entirely pee my pants, but I did partially pee my pants on the way to the bathroom. Luckily, this was usually either in the privacy of my own home, or wasn't super obvious and I could leave and change right away.

Only one time have I completely, fully peed my pants. I had just had my oral exam for my Master's degree, a big deal experience. I stopped at home, before going out for lunch with my primary professor. While unlocking the door to my apartment, that out of nowhere GO-TO-THE-BATHROOM-RIGHT-NOW-RIIIIIIIIIIIGHT-NOW feeling appeared. I hadn't even taken two steps into my apartment before I completely wet myself. The bathroom was less than 20 steps from the door, but I couldn't make it. So I went from feeling proud of myself on a big and exciting day, to peeing my pants and cleaning up my pee from the floor. It was not the best moment.

We're not done yet! Nocturia was another big one. Frequency wasn't just an issue during the day. I would also have to get up to go to the bathroom constantly during the night. I wasn't necessarily sleeping well for various other reasons, anyway, but this certainly didn't help. And then there were all the times when I didn't wake up. Yes, that's right folks, as an adult woman I have wet the bed around 10 times. There's nothing like waking up in the middle of the night only to realize what has happened, and then you're too tired/groggy/angry to want to deal with it, but you have to. This has happened twice in hotels, which just made the whole experience even better. I don't share my bed with anyone, but I really related to Honey, I peed the bed.

This has pretty much only happened during periods of stress, when I'm doing way too much and being overtired as a result. This is big part of why I decided to quit my job a few years ago. I still have other jobs, but the most stressful/tiring one is gone, and I don't think I've wet the bed once since then. Hooray!

On the medical response to all this urination stuff, I of course get asked about it and talk about it at every single appointment always. I've had ultrasounds of my bladder. I've been told I will maybe/probably have to add a urologist to my collection of specialists at some point. And of course, I was taught the palpate your bladder trick that I use all the time. I was also once prescribed something to possibly help with the hesitation issue, a drug generally prescribed for men with prostrate issues. My insurance company denied it because I was not a man. The doctor tried to fight for it and was denied. I didn't personally really fight for it because I didn't necessarily know that the drug would work, and I've learned that I have to save my energy for the inevitable insurance battles for the drugs I truly absolutely cannot survive without.

In sum, bowel and bladder problems are very common for people with MS. For this person with MS, they've been a pretty major part of my life for 10 years now, in varying degrees of intensity. Constipation or having a just generally sluggish, not correctly functioning waste system is just part of daily life. And bladder frequency/urgency/hesitation/nocturia/incontinence come and go.

More than you wanted to know? For some of you, probably. Sorry! But it's my life. This is what (my) MS looks like. This is stuff I have to think about and deal with all the time.

Shout out to the people in my life who let me talk about poop a lot, haha. Especially my mom, my sistar, my niece, and a few good friends. And to those among them who know about the necessity of my routine and work to plan around it!

Saturday, July 16, 2016

This Week in my Life: Week 28 of 2016

My rather glum feelings and perspective on the state of the world from last week's post definitely hasn't improved, with the horrifying situations in Nice and Turkey. 

In last week's post, I also promised that the start of my new "My MS Symptoms: Top 10 Greatest Hits" series would be happening sometime during this last week. If you've been looking for that post, surprise - it's not there! I'm going to go ahead and blame MS fatigue and a somewhat busy (by my standards, anyway) week. Hopefully, I'll get two posts up in the series this week, but you'll for sure get at least one before the next TWIML post.

The view from here:

Raindrops on a spiderweb. From a distance, the sunlight really made the drops
shimmer brilliantly, prompting me to go investigate what it was.
It was prettier than I managed to capture in this picture.

It was origami butterfly week in the Instagram #nanogami challenge.
This guy measures 8 mm across.

When I get stuck or somehow screw up an origami fold I'm just learning, I will often unfold to try again.
The resulting crease designs on an unfolded design are often mesmerizing to me.

I read the latest issue of Momentum at the neuro's office.
Apparently DIMINISHED SENSE OF TASTE can be an MS symptom?! That's just great.
The article suggests practicing tasting (beyond just regular eating, but specifically making sure to engage
sweet, sour, bitter, salty flavors) and sniffing on the regular, to keep those neural pathways robust. 

Apparently this infusion center has private rooms!!! SUCH A BETTER EXPERIENCE than the
usual 6 patients and their guests in a VERY SMALL & CRAMPED, awkwardly shaped room.
This is the infusion experience I'm used to from the years of Tysabri at other locations. I also had the
best nurse yet this time. I hope to get a private room again, but I'm not counting on it.

Thai Iced Tea at my post-Tysabri treat meal. Love the straw wrapper roses they always do.

Flowers at the library. 

Pretty flower (or is it a weed? it's gotta be a flower, right?) growing in my driveway.

My basil is coming along nicely.

My cilantro is doing okay, too. I've already eaten quite a bit of it.
My fave herb, though basil is a close 2nd.

What I made this week:

Some tigers.

Grilled jalapeno boats with goat cheese + cheddar. Tasty.

The makings of some mighty tasty grilled sweet potato wedges.
Cilantro, lime zest, lime juice sweet potatoes.
Not pictured: acocado oil, salt, and a little bit of garlic pepper.

MS  stuff on the web I read/saw this week:

I hadn't visited Richard Cohen's blog for a while. This post was interesting. I knew Michele Obama's dad had MS, but I hadn't realized or noticed that her voice has been totally absent as an advocate for MS and MS funding since we heard about her connection to MS before she was officially First Lady. Cohen writes:
The new First Lady described how she watched her Dad, “grab his walker, prop himself against the sink and slowly shave and button his uniform.” When he came home, he would reach down to lift one leg after another to make it up the stairs and greet his kids. I did not hear about the man again.
I had wondered if Mrs. Obama would assume a leadership role in the effort to win more funding for MS research. I realize that the endless array of diseases seeks better funding, too. The Federal Government cannot show favoritism. I get it. President Obama will leave office soon enough. So what happens then?
He goes on to talk about how much Ann and Mitt Romney have done for MS and wonders if the Obamas will do more once they leave the White House. He also floats the idea of an Obama/Romney partnership to this end, and references a charitable partnership between Bill Clinton and George H.W. Bush as an across-party-lines precedent. Such a partnership between two strong, influential women for the MS cause would be pretty great. Some of the commenters on Richard's post talk about writing letters (and/or starting a hashtag on social media) to let the women know of this great idea they should pursue. I'm in. Even if the partnership doesn't happen, I very much hope the Obamas take on the MS cause with their considerable platform, post January.

Saturday, July 9, 2016

This Week in My Life: Week 27 of 2016

This week sure went by fast. Recovering from an exhausting week is tough for anyone, but add in MS and the crushing fatigue that goes with it, and it feels like an impossible hill to climb. That said, borrowing some of this week's spoons to supplement last week's supply was absolutely worth it. So I'll keep trudging up the hill.
This week also went by slowly, with the endless nightmare that is the news. My heart/soul/mind is feeling broken and defeated and scared, and I say this knowing full well the place of privilege I speak from, and that there are many for whom the broken hearts and fear and distrust and hopelessness are millions of times worse. How do we cope and move forward with hope and make positive change? It can certainly feel overwhelming and impossible. One thing I've been doing this week (that I know full well isn't the big, magical answer or solution to the huge systemic problems and injustices) is focusing on the little ways I can be the change I want to see. For me, these actions are:

  • being KIND always and to everyone
  • noticing and celebrating beauty in nature and in humanity and creating some myself (I like the origami tradition of folding peace/hope/etc. "into" the cranes and elephants I fold)
  • sharing/liking/signing things in the social media and online spheres that celebrate/promote/maybe-possibly-even-if-in-a-super-tiny-way-help-create-change
  • having conversations with people in my life about these issues (a few race-related topics came up naturally last week with my niece and we had a few good little chats)

Will all of these things, even added together, make any difference at all in the big picture? No. But will they make tiny little differences in a few lives? Maybe. And will they maybe, possibly, when combined with all of the other people taking similar steps make lots of little differences that will add up to make a bigger difference? Yes, I have to believe that they will.

The view from here:

Ducks > Geese. By a lot.

What I read this week:

Everyone Brave is Forgiven by Chris Cleave. Another winner from one of my favorite authors.

Coming up:

Last night in bed, I came up with an idea for a new series on the blog. Leading up to my 10 year MS-versary in a few months, I'm going to do a My MS Symptoms 10 "Greatest" Hits countdown. I've had over 10 symptoms over the years, so I'll either try to limit it to the biggest ones for me or I'll combine a few on the list like numbness+tingling. 

I thought this would be a good idea because it would give a more clear picture to those people in my life who have never seen me with any of the visible symptoms, and who even if they are aware of the invisible ones, might not fully get it. This will educate those who want to better understand what I've gone through and continue to go through. I know many of the people in my life want to know more and want to understand, but some of them might not know how to ask about it, or they've tried and I just haven't really shared much.

But this is also the kind of thing I was looking for in the early days of my diagnosis. I wanted to read stories from a real person about what the experience could really be like, as opposed to a cold and clinical paragraph from a book or WebMD. So this will be me pulling back the curtain in a hopefully somewhat helpful and somewhat educational kind of way. And this is also the kind of thing I "enjoy" reading about from others in the MS blogosphere. It helps to make me feel less alone in this MS mess.

I've put this out there, so now I'm forced to follow through. First installment will be coming at you some time this week. I just have to decide what order to go in - chronologically in the order I experienced them or along a scale of severity/impact or some other way?

Monday, July 4, 2016

This Week in My Life: Week 26 of 2016

As I mentioned yesterday, this was a busy and exhausting week. It was a lot of fun, but I'm pretty done in now, and it will probably take a week or so just to recover. I won't write much today, but here are a few pictures highlighting the fun from this week with my super cool niece. I have at least temporarily lost many of the photos I took this week due to my phone suffering the latest in a series of unfortunate injuries, but here are a few plus some from my mom's phone.

The view from here:

Saw a sweet sunset.

Spent a LOT of time (around 25 hours) in a car,
only half of which was with this awesome travel buddy.

Rollerblading at the rollerskating rink!

Did some shopping.

This girl made some delicious chocolate chip cookies and I ate them.

Visited the tree this girl planted several years ago before she moved away.
It's growing up, just like her!

Swimming at the beach!

Played at a few different parks.

Swam at the pool!

Ate at the best Pizza Ranch.

Tried out a new hairstyle. Can I pull this off?

Netflix and color.

Not pictured in this week of fun:
  • I told LOTS of stories.
  • We ate LOTS of ice cream.
  • We listened to and sang LOTS of Taylor Swift/Meghan Trainor/Katy Perry/etc.

What I made this week:

This was technically a part of this last week, but it was the day before the fun-with-niece time started:

Bacon on the grill, along with veggie foil packets.