Tag Archives: Multiple Sclerosis

To Be More Aware.

MS Awareness Week

MS Awareness Week

Today starts National MS Awareness Week, and I’ve been wracking my brain for the last couple of weeks with what I want to blog about to bring awareness to this new normal I live. As if telling you about falling off the bed with no pants on wasn’t making you aware enough..

The truth is, I don’t want to tell you all the scary statistics, or list off all the unpleasant symptoms and side effects. I don’t want to talk about doctors, MRIs or medication.

I made a choice on September 30, 2013 to not let those aspects of MS define me or my days forward. I don’t let myself dwell in stats or or definitions of symptoms yet to come. Silly as it sounds, life really is too short to hold on to harsh feelings, especially harsh feelings toward something that is completely out of my control.

That mindset doesn’t work for everyone with MS. I get that. But it’s what moves me forward.
… Remember, I’m a self admitted grudge holder. I can tell you about all my friends’ ex boyfriends, and why I still hate them. But my MS is like the old boyfriend that we all still tolerate, I guess…

Anyway, maybe that’s the awareness of it all. MS affects everyone so differently. And we all fight it differently.

But the common ground is that we are all fighting.
Those of us who wake up with it every morning and those of us who love the people that wake up with it every morning.
Fighting to keep the world aware.
Let’s not stop fighting.

Humbling Gratitude.

Today, September 30th marks the one year anniversary of being diagnosed with MS. And I feel like there’s a lot to talk about in terms of this past year.
I mean, obviously. This blog has just been one post after another documenting this new journey. And some day I know that will change, and I’ll go back to gushing about my dog, reviewing books or bitching about rich people.
But lately I’ve been doing quite a bit of reflecting on the past year, and what this new adventure has brought. And mostly what I keep coming back to is how humbling the last 12 months have been.

When you regress, and age, all at the same time, you are left with a sense of insecurity and self-awareness all in one.
Last September I very suddenly was no longer familiar with the body I had known for 32 years. I was jolted to a place of exhausting hyper awareness. It’s really indescribable for me at times.
Sometimes because my brain still has a hard time finding the right words.
And sometimes because I don’t know that even if my brain was really working all the way, the right words exist.

But one thing is for certain, the past year has been a humbling one.

I’m an admitted prideful person and there have been multiple dents to that ego this year.

Asking for help is hard, y’all!
Learning to walk again! I’m not sure of a more humbling thing than needing assistance for (what seems like) one of the most basic of our abilities. I remember being in the hospital and before they would clear me to go home I had to be able to walk up some stairs. And at first I couldn’t do it. I mean, how many times have we walked up and down stairs without even thinking about it? And at that moment I just couldn’t get my brain to understand the process one bit.

Humbling has been learning how to ride my bike again, or taking a floppy left foot to the gym for a jog on the treadmill. Explaining to a gym instructor my limitations and asking for accommodations. Not being the valedictorian of Zumba still puts me in my place twice a week.
Asking for a seat on the train, or using a handicapped parking pass when the day has involved too much walking offers a gentle reminder that your body has changed in ways that are somewhat unrecognizable.

Struggling for common words while presenting to your class, or writing a paper, feels foreign as words weren’t ever mysterious before.

Tripping over my own feet, or just the exhaustion after navigating through a crowd still feels clumsy and frustrating at times.

Choking because I forgot to think about the act of swallowing my drink is embarrassing and ugly at times.

Each incident is hard to explain and even harder to understand. And while they are starting to feel like “new normal,” they are occasionally hard to accept.

But, before this post starts sounding too dramatic and sympathy invoking..
I’ve also been humbled in some of the best ways possible.

I have this husband who inadvertently has humbled me beyond measure. He has taught me that being a strong, independent woman means knowing what I am capable of, and pushing to get back to the limit. In this past year he has taught me that asking for help shows strength and confidence, instead of embarrassment and lack of ability. He has been the perfect balance of encouragement and comfort. I have, without a doubt, been humbled by his level of commitment to making me the best version of me this past year.

I have been humbled, a thousand times over, by the amount of love, encouragement and support my friends and family have shown me. Between all the thoughts, prayers, questions and well wishes I have been beyond overwhelmed by my team. I have the best people on my side.

Humbling has been a job that challenges me mentally and physically every single day. I am so grateful for the opportunity to go to work, and really work each day.

Humbling has been starting grad school again. Working hard in a classroom full of professionals, discussing passions and brainstorming change is something that I thrive on, and am so thankful that I have the time (and money!) to be involved with again. Even though I have times where I struggle getting thoughts organized into the graceful sentence stringing in my mind, it is encouraging and forever exciting to be in an environment of professional growth.

Without sounding too prideful (I’ve given you plenty of warning!) there are days that I am humbled by my own abilities. I am so grateful that (even though it took me 12 months to get here) I am capable of walking again. I am grateful of my ability to ride my bike, go to work every day, go to the gym, keep up with that busy ass husband of mine, go to class, take my dog for walks each day.

And really all of these things I’ve listed have equally humbled me and provided me gratitude at the same time.

It’s been quite a year. No question about that. And there is no question about the fact that I am in a far better place this September 30, than compared to last September 30.
Physically, of course.
But mentally as well.
Up until now, there hasn’t been a time in my life that I have been so grateful for each day, each experience and each person I encounter. What a humbling feeling..

Cheers to the next year ahead!
(Literally, cheers! … I am off for a celebration beer with the mister right now!)

I know! I hate me a little bit too..

My name is Kari, and I hate when people are picky eaters.
Okay. Now that that’s out on the table.
I don’t hate that you want to eat healthy, or not.
I hate when you order something with 5 different accommodations.

And for the last 5 months, I have been the pot calling the kettle black.
Rewind to about 7 months ago.
I follow a MS group on Facebook, and once a week they post these random questions. It asked, “New to MS? What questions do you have? Long time diagnosed? What advice could you give?”
For some reason, I was a little intrigued. So, I start trolling the advice..
(Now I should preface this article with the fact that many people had suggested this before. I’ve been sent the link to Dr. Wahls many times. I talked it through a few times with my PT, and we both decided that I just wasn’t ready to add in one more change at the time. There was so much going on, newly diagnosed, learning to walk again, getting my left side fine motors back, getting back to work, etc. a diet change would have been too much then. I still stand by that idea.)
So the advice…
Do yoga! Your body can’t thank you enough! .. Check! Yoga every morning!
Work out on the regular! Keep those muscles active! .. Check! Possibly a little obsessive about a gym routine.
Watch your sugar intake! Bad food can make symptoms flare! .. Umm, mostly check. I think I eat pretty decent.
Eat paleo! No processed foods! .. Kind of check? I try to not eat processed foods, but paleo? That shit’s a little intense, right?
Gluten free is the way to go! .. Now I’m just getting pissed!!

So pissed in fact, I start doing a little research.

And I’ll spare you all the information that I found during this research process (but really if you, or someone you know has MS or another autoimmune disorder, do the research!), but whoa!
Now all that research suggested some really wacky things! The wackiest being:
No cheese! (Ahh!)
No beans! (What about my daily canned green beans snack?!)
No sugar! (Dessert?! I love dessert!)
So I thought about it for a bit. And with the suggestion from Derek, I decided to give it a go. His advice made tons of sense, “obviously you feel better when you eat better, right? So what’s to hurt just trying it? Worst case, there is no difference.”
That made sense to me.

Even though I was still real pissed at myself for becoming one of those eaters.
Humbled and pride dented (story of my life for the last 12 months! But that’s a whole nother blog post!) I decided to give myself two months of paleo eating, and see how things went.

Long story short, I wouldn’t be lying if I said that I hated everything for the first three weeks.
But I also wouldn’t be lying if I said that my body felt the best it had since September 30, 2013.

So, here I am a few more months along. I have quite a few new cookbooks, some good recipe ideas from family and friends and am feeling really good.
So. There it is. A big secret I’ve been keeping, because “judgey wudgey was a bear.” Right, Stanford? I want to scrutinize my decisions sometimes too. I know what you are thinking, and remember, I think about what other people think. I get it.
Here’s what I get the most:
Did it cure everything? Absolutely not. But I have noticed a considerable decrease in my MS fatigue. Decrease meaning it’s non existent. And the restless pain in my legs is practically gone as well.
Do I follow paleo strictly, 100% of the time? No. That would be too hard for me. I would say I follow the idea of paleo about 90% of the time. My most consistent non paleo foods are sushi when we are out, natural popcorn every now and then, a beer, or two, on the weekend and some pizza every once in awhile.
What have I noticed making the most impact? Without a doubt, processed sugar. It kills me. Which is sad, y’all. Cause sugar is in everything! I thought I would be giving up just desserts. But it’s in everything! And I notice right when it sneaks its way in somewhere. (And by sneaks, I mean when you are whining to your husband about your day, and in your moment of weakness you decide a Thelma’s ice cream sandwich will rid the day of shittiness. It won’t, by the way. It only makes things worse when you can’t get your body stretched out or comfortable that nite.)
Ahem..
Isn’t paleo a ton of meat? Don’t you hate meat? Yes and no. Yes, a lot of the recipes are meat dishes. But you know I love any kind of fish. And fortunately there are some great paleo fish recipes. And no, I’m trying not to hate meat anymore. (I’ll let that sink in for a minute.) Weird, I know. It is for me too. I’ve tried a few meat things recently (mostly just a few bites of Derek’s meat entrees). I certainly don’t love any of it. But I’m trying to be a little more open minded about it.
What about drinking? You love beer and vodka! Now you know I love me some adult beverages. And I couldn’t for the life of me figure out why I felt so insanely terrible after drinking for the last year. Turns out, alcohol (and adult drinks in general) involve quite a bit of sugar. Sad news. Even sadder than trying meat. The truth is, it really isn’t worth feeling like you want to crawl out of your skin. Don’t you worry though, one Bloody Mary is still alright with me!
What do you eat? Really, I eat tons of things! Tons of veggies, fish, fruit (I didn’t cut natural sugar like fruit) or things made with those products. And let me tell you, people are real creative with natural ingredients! I made paleo pumpkin pancakes the other nite, and they were awesome!
And the million dollar question:
Do you really know why you are doing this? Mostly a question I have asked myself. So yeah, I’m a psychology major. The real reason is obviously control. Deep in my gut I know that having MS creates the potential for lots of situations involving my body and brain that I can’t control. And that’s hard for me. But knowing what makes me feel better, and being able to manage that in my own way (through my diet) offers me a little control over the disease, and right now I can’t pass that up.

That’s the honest, unprocessed, non sugar coated truth.

Old News.

So the old news is, I got a new bike! But so many people have been asking how I like it I thought I should just tell y’all!

The short story is this: I hate to love it.

The long story is this: Derek and I do quite a bit of bike riding. It’s a fun way to spend time together, be outside, be active, and obviously the beers involved are an added bonus. After being diagnosed, I didn’t even think about riding my bike. I was clearly more concerned about things like Lollapalooza. So when summer time came and we got the bikes out again, I was a little frustrated with my new lack of ability.

One of my residual effects is an out of whack balance system. For the day to day, I do pretty well. My balance feels weird in my head, but I feel like I compensate for it pretty well. I have quite a few little tricks I use, like always watching the person in front of me, keeping my eyes straight instead of looking around a bunch, etc. But the month of June was particularly hard for me, and those tricks weren’t even working.

I was having a real hard time on my two wheel bike. Starting and stopping was a nightmare. Making turns was nerve-wracking. And any sort of street traffic was just out of the question. Every time Derek and I would go out I would be just counting the mileage in my head. I kept thinking if only I could get to 10 miles, then it would be good. In the meantime, I could only stare at Derek’s back, not speak to anyone, and go about 7 miles an hour. (Not to mention, hold back some tears. Not proud… but true.) And in the end, when the ride was over, my brain was so exhausted from concentrating so hard, that rest was in order. Not to mention, I could definitely not stop to have a beer. That would have really sent me over the edge.

It obviously got to the point where bike riding was not fun. And that sucked.

So my insanely positive, optimistic husband began suggesting different options for me. At first it was kind of a joke. But, really I wouldn’t mind riding on one of those little “trail along” carts! But then some real options came into the conversation.

We started with renting a tandem bike out at Gray’s Lake. That was a test of our marriage. I felt like I was a confidence and balance nightmare for Derek. I can’t imagine having me on the back of a bike. (Minor gushing moment, but Derek really has more patience than I ever knew or imagined. Whoa.) The one good thing about the tandem though was it felt normal again. Riding it reminded my body what normal bike riding was supposed to feel like. Taking a turn, or riding at a decent speed felt right. The frustrating things about tandem riding (besides my confidence, of course) are the back person really can’t see much of anything except the back of the person in front of them, which is what I was doing before and was honestly hoping to do a little less of. Also, there really isn’t much independence with tandem riding. I am going wherever Derek is going. I am stopping when he stops. I am cruising when he is cruising. So, while it was an alright experience (the second time!) it wasn’t something I saw us doing on the regular.

During all this, Derek had also been suggesting recumbent trikes.

Yep.

A trike.

As in, three wheels.

And honestly in the beginning, I was all “Hell. No.”

Little disclaimer here, I judged the hell out of people who rode those recumbent trikes. I thought it would be the easiest thing to do. I didn’t consider it a workout, or much of anything else beyond a joke. And also, let’s be real (I mean, really real. Like ugly real.) I like to be good at things. And since I have been diagnosed, I want to be really good at things that other people with MS have struggled with. Honestly, I want to be able to do things that people wouldn’t expect, and do them well. I don’t want people to say, “Kari rides a trike because her MS causes problems with her balance.” I wanted people to say, “Yeah, Kari still rocks two wheels even though her MS causes problems with her balance.” (I know! I think about what other people think! I am working on it! I promise!)

I was incredibly prideful about riding my two wheel bike.

And that’s when Derek finally said, “So you hate the idea so much that you just aren’t going to ride bikes anymore?” Ugh. You know I didn’t want to stop. But, man!

So I agreed to test ride one.

When we got to the bike shop to initially look at trikes I wasn’t over the pride quite yet. I tried to sucker poor Thomas, our salesman, into saying that other bikers think of people on trikes the way I do. I tried my hardest. I’m all, “Come on Thomas! You are obviously a big biker. What do you really think about people who ride trikes?” And he said, “You know, there are so many people that this option works for, people who just love bike riding too much to give it up. They just want to be out having fun and this is how they do it.” Just like that. All matter of fact. All “if you like it enough you will get over your pride” like. And so then I cried, because apparently being prideful also makes you sappy.

After a few tears, I took the trike out for a ride. It was so good to be riding a bike without exhausting my brain. It felt so good to ride beside Derek and chat while we were going. It felt so good to cruise around corners without freaking out. It felt so good to be moving again without a feeling of panic. It was good. And eventhough I hated to admit that it was good. I was really excited about riding so carefree again.

So, 2,500 dollars later (whoa! Thanks for the little loan, dad!) I took home a Catrike Trail and I love it. There are days I am still a little self conscious about it (until I drag my own ass up a hill without being able to stand up or lean forward. INSANE!!) and there are days that I can do some riding on my two wheels with better balance and confidence. I am now a girl with a few options. And I am totally okay with that. Because then the hardest decision of my bike ride is only where to stop for a drink.

Being aware.

May 28th is World MS Awareness Day, and I was thinking about posting a link to some national MS blog covering the awareness efforts.
But so many of the posts seemed depressed, dark and desperate.
That’s not what I want my awareness to be about.
Not to say there haven’t been dark or desperate days. There have.
Or depressing moments. Because there have been a few of those as well.
But that’s not what I want you to be aware of.

I want you to be aware that MS affects 2.3 million people worldwide each day. And many of those people you might not even be able to tell.
I want you to be aware that I’m not always drunk, I just walk a little funny at times. … Well, especially when I’ve had too many bloody Marys.
I want you to be aware that independence is still incredibly crucial, but so is accepting help.
I want you to be aware that asking questions is important, and so is processing thoughts for an answer.
I want you to be aware that sympathy isn’t necessary. But support is.

And support.. Oh man, let’s talk about that for a minute!
Look at this crew!

The Upper Midwest Chapter of the National MS Society held a Walk MS event in Des Moines last weekend, and I was surrounded (literally, surrounded!!) by so many people who love and care.
So many people who are aware.
And this photo doesn’t even include people who came later to celebrate, who donated from afar or who sent messages of love and encouragement.

I have said it 100 times before, and I feel incredibly fortunate to say it again, I am one lucky girl.

I want you to be aware that I have got the best support system a girl could ask for.
I want you to be aware that I am completely overwhelmed by the people in my life.

That’s what my awareness is about. Bringing people together to share time, laughter, (bloody Marys) and love.
Thank you isn’t enough… But, for what it’s worth, you have all my gratitude.
Thank you for being aware.

More photos here!

Moving On.

I was explaining to my massage therapist the other day, “No just a 30 minute massage on my legs.”
She asks, “Have you started a new workout routine? Running?”
“No, I have MS, and my symptoms show mostly in my legs. So it feels real nice to have them rubbed every couple of weeks.”

And that was that.
I didn’t make any snotty comments.
I didn’t make any uncomfortable jokes.
I didn’t make any politically incorrect statements.

Because snotty comments, uncomfortable jokes and politically incorrect statements are sometimes bitter.
….

The doctors told me that six months after my initial exacerbation would be the date I would know which symptoms had left permanent damage. Basically, six months from September 30th would tell me what my real (new) normal is.
So March 30th finally came… with a lot of anxiety.
And (admittedly) a lot of rage.

After a minor (let’s be real.. I don’t do much “minor.”) melt down to my unbelievably supportive husband, I finally let go of six months worth of distress and anger.

Both feelings are justified. A shit ton of shit fell into my world all at once. And obviously mostly not for the better. But the truth of that justification is that life is just too short to be bitter. Shit tons of shit fall all over everyday. The only difference is how we all want to deal with it.

And I’ve decided It’s so much energy to be angry all the time. (And let’s be real, I gotta bank that energy for weekends out with my friends. I’d much rather use that energy for Bloody Mary day drinking!)
It’s okay to have felt the disappointment from the last six months. But, there’s no time to hang on to anger, it’s not changing anything. And in the meantime I can’t stand to even miss out on all the good things going on:

I have the best partner in life anyone could ask for. No questions asked, the past few months have shown me how patient, involved and accommodating my husband is. He’s beyond what I ever imagined.
I have incredible friends that don’t miss a beat. There’s always just the right amount of expectation and understanding to keep life moving right along.
I have a family that supports my choices through this new adventure especially in healthcare and personal care. They are the real example of providing roots and wings.
I have a job like no other (in many, many ways!) that challenges me mentally and physically everyday. I am so fortunate to work with people who love and care about me like family.
I have a body that might have some aches and clumsiness along the way, but still has strength and determination. With the right amount of routine, I’ve overcome a bit and feel really good about it.

That’s not to say there aren’t moments where frustration comes in. There are for sure times where things just aren’t like they used to be, and it’s a little irritating. Still somethings that I might not be able to do again (ahem, glitter heels), or at least do like I used to.
But that’s life, right?
Life happens and we continue moving forward.
We have to.
I have to.

I mean there are still some things that deserve some uncomfortable jokes, right? Like falling off the bed while sitting down in only your underwear. Gah! It’s so awkward, it is funny.
And really, in times like that what’s a girl going to do? She’s going to confront the elephant in the room and make a joke about it.
Obviously.
Besides, that’s a great story to tell over bloody Marys, am I right?!

Celebration!

In the short 6 months that I’ve had MS, a few things have been very apparent:
I have the most incredible support team.
Des Moines is lacking in the awareness of Multiple Sclerosis.

So, to show my (our) appreciation to you… And all your kind words, thoughts, prayers, laughs and love, my irreplaceable husband has set up this team.
Please if you can, join our team, walk with us, grill with us, (let’s be real.. Have a drink with us!) and laugh with us.
And if you can’t, donate to our team, enjoy our photos afterward or cheers a Bloody Mary that morning from your neck of the world! Think of us on May 17th as we often think of you.. With gratitude and love.

I am fortunate enough to have an amazing support system. Help me raise awareness for those in the Des Moines area who aren’t as lucky.

http://main.nationalmssociety.org/goto/team-kbroox