Tag Archives: Multiple Sclerosis

Heads or Tails?

Good news or bad news?

I usually pick bad news first. Get it over with. Get it all out in the open. And really, then everything just goes up from there! And besides, bad news, like really bad news, is intense. Like a tornado, or cancer.. Or Lincoln Cafe closing, and usually those terrible options aren’t part of heads or tails games.

So let’s play good news or not great news? And let’s start with not great news. Because that’s what I do, and this girl is nothing if not routine.

So. Not great news. I’m in the middle of another exacerbation (flare up).. Or maybe just still the same one (that’s for a whole post about the competency of the health care world, whoa!) But, regardless if it’s new or old, it’s here and slowing me down just a bit. And even more annoying than that? I knew it was happening starting about 4 weeks ago, but the earliest my super compassionate neurologist team (they like to be called a team so that no one is soley responsible for being a dick) could get me in for an MRI to confirm the lesion was Tuesday nite. So, it’s back on steroids I go! (Don’t say I didn’t warn you!)

So there it is. The not great news. Totally annoying. But totally not “bad news.”

And even better, is the actual good news. And there’s tons of it! Literally 30 minutes before I got the phone call confirming the new flare up, I was running on a treadmill! This time sans safety harness! And after the treadmill I was fast-footing it through a rope ladder in just 7 seconds! In fact, my physical therapist ended the session by telling me that starting in January I will only need to come once a week.

Other good news? I mean, I hate to brag.. But here goes: I passed all my short term strength goals for my OT work. So I only have to meet with my occupational therapist one time a week to continue fine motor perfection! Great news!

I am back to work! Full time! And I’m pretty sure it’s the best thing that’s happened to me. Whoa. Sometimes I just realize that I love my job so much and being away from it was hard. Those hooligans (and the 5 subs that cycled through) are so happy to have me back, and the feeling is beyond mutual.

I am cleared to go back to the gym! Super great news! The gym is a little like church for me. I’m obviously not super into body building (or strict dieting, clearly!) but, working out is one of my best stress relievers and I am ecstatic to get that back into my routine. Slowly, of course! Don’t be worried! (Although, this will be my first steroid gym experience! Look out for the Hulk!)

And lastly, even though it’s super hard for me to say, or more so actually believe, the exacerbation was not caused by anything in my control. You see, this is super huge good news for me. I am a complete control freak (like I need to mention that AGAIN!) and have tried to determine every possible thing that I might have done to cause this.. But the truth of the matter is, I didn’t do anything to cause it! I know you all have been worried about the shrimp, the gluten, the diet soda, working full time, working out, the bloody Marys.. All of it. But those things didn’t cause it either. (Thank you for your concern though, I am by no means trying to seem ungrateful for your thoughts!) But, really this is some of the best news for me! It sucks that the realization comes with some not great news, it is for sure something I needed to come to terms with on my own.

I have a disease in my brain that is out of my control. Granted, there are things I can do to make my disease more manageable, which I am doing at full recommendation of all my doctors. (Have I also mentioned how much of a damn rule follower I am? It’s slightly embarrassing!)

And beyond that, I just get to keep living without restrictions. Keep working, keep going out, keep traveling, keep spending time with my favorite people. Just keep going on, stopping for a steroid dose or two along the way, but still going. And it feels really good right now.

So heads or tails??

Winner buys the next round of bloody Marys.

Disclaimer*

*My husband pre-read this blog and informed me that it “might not seem as positive as the past few.” To that I replied, “I can’t always be hilarious, Derek! A girl can only tell the story of falling off her bed while sitting with no pants on one time without people getting bored.”
With that, be forewarned.. I can’t always promise intense positivity or side splitting humor.. but I can promise sincere honesty. So that’s what lies ahead today. (But, I’m fine with Chelsea Handler moving over anyway..)

I’ve never minded being the center of attention. In fact, some people might say I love it. And for the most part I think I would agree.
The only time I can really think that I didn’t like having all eyes on me was while I was walking down the aisle at my wedding. I was still trying to process how I was feeling about joining my life (forever!!) with someone else, and the 500 eyeballs glued to my awkward facial expressions were far more than my fetus 24 year old self could handle. That’s when I realized that I only enjoyed being the center of attention on my terms. (Ahem, obviously, control freak…)

I mean, I think I’m funny. I love having attention when my wit is at its peak.

I think I’m a good story teller. Having an audience makes the embellishing come easy.

And I love people and conversation. Surrounding myself in that is almost soothing at times.

Being the center of attention is not on my terms right now, and I mostly hate that.
Don’t get me wrong. Hands down I have had the most amazingly supportive network of people in my life. My gratitude is beyond measurable. And I am without doubt that without that I would not have nearly as positive an outlook as I do right now.

That being said, it’s a big job convincing people that you are okay. (I mean, in terms if having MS, I’m okay. I’m obviously not running any marathons or being drug off any dance floors.) Mostly because people have to see you to believe that you are alright. And along with that comes some interesting internalizations. I mean, outside first look? Same Kari. Take two steps forward to hug it out. It gets a little noticeable.
And that’s okay!!!
Really, it’s okay!!
See!! This is me, convincing you, it’s weird and okay!! All at the same time!

It takes a lot of energy reminding everyone that life moves forward and with that ticking time, you keep enjoying the little things. I’ve got to keep meeting you for dinner, going out for drinks, making completely inappropriate jokes. And you’ve got to keep doing the same. You’ve got to go on with your life just like before, be a little more aware of others and not be afraid to laugh with me about a flopping left foot. It’s a weird junction I’m at right now, but without honesty and humor I’ll never make it to the next stop.

And it especially takes more than a lot of energy (cause this MS sucks the damn energy right outta ya!!) keeping it all together all of the time.
There’s a weird thing that happens in your brain with MS… I mean beside the flared up lesions. Cause really? That’s some weird shit! I’ve got photos! Look here! Weird, right?!

So even beside that, this weird thing happens that feels like fatigue, but probably just comes out as complete bitchiness
(Which you know I really don’t give a shit about. But I feel like I should acknowledge for at least conversation sake.)
It’s like you are surrounded with everyone you know and love. You are having great conversation. But then you realize that you can’t really focus on what is being said. All of a sudden you realize you know the next word in the song playing over the loud speaker, but you just aren’t sure what your response to the question just asked should be.
And really, it’s not for lack of trying! I’m really concentrating as hard as I can, but somewhere along the way my brain transformed into the 14 year old ADHD brain, constantly distracted by hot girls and shiny buttons.
(Not in the sense that MS made me a lesbian, I just appreciate hot girls and understand how they can totally fuck your train of thought.)

*So yeah, combine that distraction with unwillingly being the center of attention and I’m generally just seeming like a real big dick lately. And mostly it’s really just a lot to explain during normal conversation (and let’s be real, I’d probably lose my train of thought half way through..) I’m not trying to be ungrateful or a terrible listener.. I’ve just got the MS for the time being.

Or maybe I’ll just blame it on too many Bloody Marys..

2nd Place Valedictorian

It’s no secret, I like to be the best at things. The valedictorian, if you will. Don’t get me wrong, I don’t like competing with people. In fact, competition makes me feel all nervous and awkward, not awkward funny, awkward like a bad joke or public displays of affection. I only like competition when it’s against myself.

Let’s say my fitbit says I got 11,000 steps today.
(Which we know is not true of today, because I’ve still got this damn gimpy left leg, not so much dragging anymore as, flopping around beside me with a mind of its own!)
(Also, the fitbit is the worst gift for a valedictorian like me. And by worst, I mean best, of course! I am obsessed with it.)
Okay, so yeah, say (on like September 28th) my fitbit said I had 11,000 steps. Well, you better believe that on September 29th, I am for sure going to have at least 11,001 steps. Just to be better.

Or I have 13 things on my Tuesday to do list (That’s another post.. The to do lists! Gah! Killer!) and I got them all checked off. Welp. You bet your hot little ass, 14 things will get done on Wednesday.

It’s a sickness. I’m sure of it. And actually I don’t really care. I love being the valedictorian of crossing things off a to do list. What?!

I’m sure it’s obvious, but the past few weeks have put a little damper on my valedictorian status.

It all started at my first appointment with my neurologist. After a billion questions and tests, my neurologist asked me to walk for him. To which I confidently responded, “Oh yeah! I am getting really good at walking! Watch!” I proudly strutted through that office like a supermodel on a runway. After a few hair flipping turns, I turned back, beaming with pride, anxiously awaiting my overdue praise. To which my doctor sucks in a giant breath (impressed, right?! I know!!) and says, “Okay so there’s still a significant need for physical therapy. On second thought, don’t stop taking the steroids early. Be sure to finish them. All of them.”
Dammit! Really?! Okay.. I guess I can be 2nd place valedictorian walker today. Fine.

A few days after my 2nd place valedictorian walker award was received, I was most definitely awarded 2nd place valedictorian MS yoga participant.
Derek got me all set up with these great MS yoga videos, all my yoga equipment and some privacy (mostly for his benefit!) in the basement and wished me luck.
Remember that aforementioned left leg with a mind of its own? Yeah. That limb was All. Over. The. Place. I mean, here’s this well behaved right leg, properly extended, flexing and hovering a nice six inches off the floor. And the left? Oh, that naughty, independent appendage is just waving in the wind, flopping around like a dead fish. What are you doing?! Get it together! 2nd place is the first loser, lefty!!

And now for the most accomplished of the 2nd place valedictorian awards.
My doctors and therapists have all recommended that while putting on pants, underwear, socks, etc. I should be sitting down. (As if the option of skipping into them was available. Have they seen this dumb left leg?!) So, per recommendation, because I am still the valedictorian of following the rules, duh! I was sitting on my bed, getting ready with my pants around my ankles. I would like to say that I was reaching for something, but really there was nothing. I just lost my balance and fell off the bed.
While sitting.
With my pants around my ankles.
In front of Derek.
In. Slow. Motion. (Because I have MS, nothing is fast.)
Yep. One minute talking about what I am going to order for dinner. The next minute, mooning my husband while face planting into the carpet.
Nothing says graceful like your blinding blueish white butt cheeks face up mid conversation.
2nd place valedictorian of gracefully sitting on a bed. Right here.

I’m sorry you even have to think about that!

… Actually, I’m not really, because it is really funny. And you know how I love when anything can be turned into a funny story!

So yeah, 2nd place valedictorian isn’t all that bad for the time being. I mean, it’s actually pretty awkwardly funny. And everyone knows I love to hate awkward funny.
Now, if we could just work on getting a Bloody Mary served with all these awards…

New Reality.

So, I’m about 15 days into this MS journey, navigating through new realities.. A little slower than my normal fast paced, ADHD life, but still navigating.
As if I could ever give up that control..
A few things I have realized along the way so far:

Pee is urgent! I mean, really urgent! Like all of a sudden, you are afraid you are peeing your pants. Well, not really afraid, because you know it doesn’t scare me to pee my pants. I think that’s just a funny story. Now it’s just an urgent, funny story.

It is really difficult learning to ask for help. It’s a good thing I have such an amazing husband, such understanding family members and such trusting friends.. Because they have given my independent self just the right amount of freedom and boundaries to not bruise my ego when it comes to saying what I need.

A bed alarm is the absolute worst! Being labeled a “fall risk” (complete with florescent bracelets to warn those I might have come in contact with) meant that I was not allowed to get out of my hospital bed without a nurse coming to shut off the alarm. That’s right! A loud blinking, beeping alarm would go off anytime I swung a limb off my bedside!
(Never mind if I wasn’t even trying to go anywhere! Never mind if I was just trying to recline that damn hospital bed back far enough to stretch a good right arm to an outlet to plug my hair straightener in!)
Busted every time. Well, until I learned to disarm the bedside alarms. And then all bets were off. Because, let’s be real, sometimes there’s no stopping a vain girl from doing her hair, even in a hospital gown.

Telling your finger to touch your nose is way taken for granted! I’m serious! You do that right now! Touch your nose! Ten times even! When your brain can’t get your finger to do that, well, that’s when shit gets real weird. And consequently that’s also when you should probably just go to the ER. But, it probably wouldn’t be a bad idea to have a slice of cold pizza first. You know those ER doctors won’t let you eat for awhile!

One huge change for me, that’s really taken some time coming to terms with, is I do have a heart. I mean, I knew there was something in there holding things together, but I liked to think of it a little chiseled, maybe a little rough.. Picture a diamond. Ha! Not complete stone, but some potential to shine.
Okay, truth of the matter, I have never been a sappy person.
Sentimental, yes.
Romantic, no.
Concerned, empathetic and caring, I like to think yes.
Weepy, touched, poetic, nope.
So I’m not sure if it’s the combination of my birthday and the amount of outreach I have received regarding this diagnosis, or what. But all of a sudden I’m the Grinch on Christmas morning, listening to those little woovilles sing about no food, with a heart that has grown three times the size.
At the risk of sounding ridiculous, I have found a new sense of calm that I am sure can only be attributed to the amount of support, love, encouragement and generosity that so many people have shown me and my family. I am beyond words when it comes to being grateful.. For things I had never expected to be grateful about.
Example? My friends in vegetable costumes! Vegetable costumes that raised over $2000 in less than two weeks for MS research. There’s a whole new level of humbling peace (although I didn’t seem like that when I was screaming in delight on FaceTime!) I never thought I would know.
It really is incredible what a little life changing mishap can do to teach a girl about humility and gratitude. Don’t worry though. I’m not letting MS take my signature cynical, old crabby lady sense of humor. Oh, hell no. But I suppose I little bit of sensitivity never hurt no one!

I got started with my new neurology team here in Des Moines and have some exciting things working for my future. … Until then just waiting for all these steroids to pass through, and keeping my fingers crossed for no chest hair or a growing penis!

Maybe part of this new reality is blogging a little more as well (Karma! You bitch!!) I know there are many updates, and I, very fortunately, have many people to keep updated. So this might just as well just be the new place for all if that.
Well, unless you ever want to meet up somewhere and be updated over bloody Marys. Because you know that’s always my favorite option!

Life These Days..

It’s been a rough couple of days with a rough diagnosis. Yesterday, after waking up with no feeling on my left side, and no use of my left limbs, I spent the day at the Illinois Masonic care clinic ER room, and was (after many, many tests!) diagnosed with Multiple Sclerosis. I have 3-4 more days to spend at this hospital, getting pumped full of steroids, talking with tons of doctors and neurologists and, hopefully, getting my feelings and movements back. And a week of inpatient rehab, that I am begging to be able to do in Des Moines! Whoa, right?! Jumping right into some heavy news! Apologies, that’s how it happened here too.

Social media isn’t maybe the most appropriate way to make such a daunting announcement, but it seemed the easiest way to reach so many (already concerned! Thank you for thinking of me!) friends. I don’t know a lot right now, and probably won’t ever know all the answers to the billion questions I have. But a few things I do know:

I have some of the best family and friends a girl could ask for. Your messages, your thoughts, your prayers.. All of it have been incredibly appreciated and not gone without immense gratitude.

And without a doubt, I have a husband who is far better than I ever imagined. I am not sure how I got so lucky to share my life with someone so courageous and encouraging.

So thank you to all of you. Really, thank you, thank you, thank you. Thank you for not being weepy, or having any pity. Thank you for being encouraging and laughing at my off the wall jokes. Thank you.

Life is this crazy journey and sometimes we wind up in places that aren’t always that awesome. But the good thing is, we get to just keep moving (dragging our limp left leg behind us, but moving none the less!!) and hopefully the next stop is even just a bit better. But we will never know unless we just keep taking this journey one day at a time, with a full heart and a (often wildly inappropriate) sense of humor.. So that’s my plan! .. And you know how I love plans! .. And bloody Mary’s. Could a girl get a Bloody Mary up in this piece?!