Because I Can

I'm about to say something sacrilegious if you knew where I work... Good thing I keep my work life separate from my blog? Perhaps... But I've never been into awareness weeks, or months. Why? Because the day/week/month comes and goes, and very few remember it.

I'm assuming most of you are totally unaware that this is MS awareness month/week depending on what source you are looking at... which perfectly illustrates why these awareness periods don't excite me, since we can't even agree on whether it is a month or a week!!!

Here's the thing, I get down on these weeks and then I remember the ice bucket challenge that tore through all social media news feed for weeks. Basically that was one guy making one statement and not realizing the impact it would have to raise awareness for ALS. I honestly don't think anyone was expecting the world to take it by storm in such a way. I watched people's reactions to this challenge and simply chuckled. Some people were angry that their cause didn't get quite the attention, some people were annoyed that their news feed on facebook was clogged with hilarious videos of their parents dumping buckets over their heads, some people laughed hysterically when Bill Gates created an ALS ice bucket contraption to spill water over his body... You know what? Regardless of the reaction that people had regarding the challenge, it got everyone's attention and now more people are aware of the struggles people face day to day as a result of ALS.

I often wonder why I am not so clever. I mean really... had I thought of dumping a bucket of water over my head because I have MS and want to raise awareness, perhaps the MS society may have realized similar increases in funding. The reality is that I am not so clever and so, instead I write my blog post for my five readers... And knowing that I may have raised awareness of one is enough for me...

So why does MS awareness really matter to me? Well quite honestly, it is because of the people who are more impacted than myself. It was so hard for me, being a person with MS, to watch the women and men who came out to cheer on the riders at Pedal 2 the Point last year. It was hard to watch them in their wheelchairs, with their canes, walkers, even the other riders who were wearing their 'I ride with MS' jerseys, and not wish away their struggle. Going from perfectly abled to less so has to be a trip, and not one of leisure.

So here are the stats, totally unsited, but out there to find if you like google:

- Approximately 500,000 people in the US live with Multiple Sclerosis. Amazingly, I have two cousins with MS and an old friend from girl scouts living with MS. Those are the only people I know personally with the disease.
- MS drugs rank near the top of specialty drug costs for employers. Shhh... don't tell my employer this!
- The average cost for an MS patient a year, in medical expenses, is $30,000. Now, don't be freaked out by this, as you have to consider the more severe cases skew that dollar amount upwards fairly significantly (thank goodness, that could really make me poor, not just broke).
- MS ranks second to congestive heart failure as it relates to costliness.
- My siblings have a 1-3% chance of developing MS, which is why I tell them to spend some time in the sun!
- Vitamin D deficiency is a common problem with most people who have MS. Unfortunately, I am so fair skinned, being out in the sun is not an option for replenishing my vitamin D stores, but vitamins are!

I could go on with the statistics for awhile, but I'll stop there since I have no interest in siting all of these sources. I think what I am trying to illustrate is that MS is expensive, and really anyone can have the disease.

Now, I'm not going to go and dump a bucket of water on myself, or jump out of an airplane to raise awareness... Instead, I am going to ask all of my readers to take a moment and talk to someone you know about MS. If I am the only exposure you have had to this disease, then go ahead and share my story. My elevator speech would go something like this:

I'm a 35 year old woman living with MS. I'm lucky because I can still do everything I love to do, although I may not feel my toes while doing it! I want to continue doing what I love (running, swimming, cycling), and currently there is no guarantee as MS progresses differently for everyone and there is no cure. I don't feel sorry for myself (most of the time), and I will continue to challenge myself physically and mentally. I want to find a cure, but not for myself, rather for the thousands of people who are not as lucky with me. Tomorrow, I will go out and run a few miles, and dedicate those miles to every person I know (and don't know) who has MS. Why you ask? Because I can!

Beginning, Middle... Where's the End?

I'm fairly certain that I have written about this before, but here I go again...

Every good story has a beginning, middle and end. The reason I enjoy a good movie, a good book, etc. is because there is always a conclusion!

When I was first diagnosed with MS, I got increasingly annoyed by the statement "at least you don't have cancer." OK, I get it, MS is NOT going to kill me, but there isn't really an ending to my MS story. Really, there isn't an ending to anyone's MS story because there isn't a cure and it isn't fatal. With cancer, there is an end; not always favorable, but some sort of conclusion. What does this mean? Every day, I get to wake up and acknowledge that it is just another day with MS. Why? Because being diagnosed with MS is 'til death do us part'... although admittedly I'll forever be poking around for some sort of conclusion to my MS story.

I need to acknowledge that 90% of the time I am no longer bitter about the fact that I will never be cured from this odd disease. I say this because I have a very close friend who challenges me daily with living for today, not last week or next year. Sometimes I basically tell her to take a hike because I need to be in my 10% misery for a little while, but I always find my way back from that place.

OK, so what is it really like not knowing what the conclusion will be when you have a chronic disease? Well, think of that favorite TV show you had at one point, that suddenly went off the air because you and only two other people were still watching it. Do you recall sitting around trying to figure out what was next for the characters? I think a show that speaks to a large population is LOST. I never watched the TV show, but I do recall hearing all of the conversations that people were having about the show... Were the characters aliens, were they dead, was the island purgatory. I honestly don't know what that conclusion was, but I know the people who cared were sitting on the edge of their seats waiting for the conclusion.

Why?

I think it is human nature to want to know what comes next, or how the story is going to end. We need to see beyond today to know that our lives will be exactly how we want them to be 20 years. I have a bit of a secret... Don't get too caught up on your plans because something is going to change those plans for you. It doesn't matter though because the plans are literally just plans, kind of like your budget is just your budget. I'm sure you have had a time in your life in which you had no idea something was going to break, and then your budget went right out the window. Last year, for me, it was my refrigerator, followed by a broken pipe, followed by a broken hot water heater. The only choice I had was to fix all of these items and move on. I learned some very valuable lessons with each twist of the road, but the most important lesson I have learned is that, in this moment I am exactly where I am supposed to be.

I guess what I am getting at is that I have to quit yearning to know what the end will look like, because really, the middle is what really matters in life!

Thinking Out Loud

I'm not a big Ed Sheeran fan. As a matter of fact, when I hear his songs come on the radio I'm fairly quick to change the station, and along came Thinking Out Loud, and my Ed Sheeran disdain subsided. It is kind of like my relationship with Bruno Mars... I am embarrassed to say that I like his music, but am not embarrassed by the creativity and thoughtfulness of the lyrics. This is where I should mention that Ed Sheeran was not alone in writing Thinking Out Loud. Amy Wadge, a songwriter, helped write this song.

The opening lyrics of the song immediately spoke to me.

When your legs don't work like they used to before...

Boom! I'm intrigued.

And so I listened intently... It turned into a love song about the world of unconditional love. Life experience has taught me that unconditional love/friendship does not come along daily, and so when it does, it is a true gift

For those of you who have a chronic disease, doesn't matter what disease, you will likely understand this fairly easily. Basically, your body will likely change over time, perhaps at a more progressive rate than your peers who do not have a chronic disease, and there is this fear that can travel along with the chronic disease that people will abandon you, leave you, and choose not to be your friend. Ask some of the people I spend a lot of time with and they will tell you this is my biggest fear. I fret over it actually...

Here's the interesting thing, I'm not afraid of not being able to walk. You know why? Because there is always a wheel chair. I'm not afraid of the pain. Why? There is medication. I'm not afraid of falling over because I can always get back up, in some way. And this is where the lyrics take me to a place of longing for knowing my friends will stick by my side.

The one thing I know is that regardless of your situation, chronic disease or not, you never know what tomorrow has to bring and so it is extremely important to live for today, something I struggle with. It is a hard concept for some people, including me, but this song speaks to that fear of not having at least one thing that is unconditional in your life.

I'm the queen of being hard on the unconditionals in my life, fair or not, it is true. If I know you will be around tomorrow, I can sometimes take advantage of that. I hope I'm not alone in that, and I suspect I am not, but when you listen more closely to the lyrics, and take the love out of it...

When my hairs all but gone and my memory fades

And the crowds don't remember my name

When my hands don't play the strings in the same way

I know you will still love me the same

These lyrics are not about love per se, but instead about the gift of truly caring about someone unconditionally, through the bad days, the not nice words, aging, changing abilities and so on. I know that I am a fortunate one; one of the people who has unconditional friends/family who would likely say:

...your soul could never grow old, it's evergreen

...your smile's forever in my mind and memory

I'm lucky that people trust this, especially on my grumpy days!

So, what is the true point of this post? I honestly don't know the answer to that... I'll let you figure that out for yourself. The one thing I am personally taking away from this is that when my unconditional people around me 'keep making the same mistakes', I will give them the gift of understanding! You should too!!!

Here is the song for your listening pleasure. (If you are viewing on a mobile device, and can't view the video here, you can access it through this link https://www.youtube.com/watch?v=f6Cswdm601A)

Merry Christmas

It has been a couple of weeks since I have posted on my blog. I'm taking a break until the new year. I did, however, want to take a moment to wish my readers a VERY Merry Christmas!!!

People First

I was blessed with participating in meaningful volunteer opportunities at a young age. It all started with confirmation hours in eighth grade... I went on every trip to the soup kitchen and the Christmas wrapping days, I also signed up to help people with disabilities participate in recreational activities. And so began my first lesson on people first language. Perhaps you have heard of it? It is that whole idea that when you are introducing or talking about a person, you should always address them by name first. So for instance, if I were talking about my favorite TV show, and I wanted to talk about Max and his disability, I would introduce the topic by saying something like: Max, the boy with asperger, NOT: the asberger boy Max. This language has become so common to me, even writing the second statement makes me extremely uncomfortable.

So, I was having a discussion about how people hang flags in front of their houses, or put bumper stickers or messages on the back of their cars. We were discussing the motivation behind such displays, and this is where I tell you we put WAY to much thought into all of this!!! Anyway, this all came up because a truck was driving down the road with the ten commandments written on the back of it's vehicle, and it lead us to a broader discussion of those bumper stickers and flags I mentioned earlier.

It got us talking about how we perceive people we don't know, when the first thing we are introduced to is that one piece of them they put on display. We had differing theories, but this made for a more substantial and meaningful discussion. It also made me delve deeper into my thoughts about disclosing I have MS to people. First I want to say that I haven't made a ton of new friends since I have been diagnosed with MS. As a matter of fact, there is only one notable new person in my life, since I have been diagnosed. I made the conscious decision to not tell this new friend that I have MS right in the beginning. It simply wasn't relevant... And then she saw my shot, after I had known her for several months. This was the point in which I disclosed the fact that I have MS. It was an interesting conversation in which she told me she was going to ask if I had a stroke or something because my eye was droopy and she saw me stumbling. I laughed, we moved on, and we sometime talk about the fact that I have MS, but we primarily don't, because that isn't all I am... Or is it?

I don't care who you are, or what people say... When you are told you have some sort of chronic disease, regardless of the prognosis, there is a period of time when you simply can not live in a world where the people first language makes sense for yourself. What does this mean? Since I have been diagnosed, MS simply comes up first. Why is this? Because I give it that power. I'm not saying this is right, and I'm not saying this is how I want to live in the long term... I'm simply saying that it is!

I have recognized this, and it is precisely why I have my MS free months. I do that so I can reacquaint myself with, well, myself. It is also the time I give the most amazing friend I have known, a break from my meandering about MS. Unfortunately, this month has not been declared MS free, because I had my annual check up, and so it has been the center of my world with her again... Is this fair? Nope, but again, it is...

Anyway, because of all that I mentioned above, my relationships with other people have been tested. The most important people have become even more important, and I think they all know that. The most important relationship in my life, my relationship with myself, has been tested in the most dramatic way, and although I have my daily struggles, I know that at some point I will live in a world in which I can view myself through the lens of people first.

For now, I embrace and love any person who is willing to process through my struggles with MS, so I can get back to that place! Remember that those relationships that challenge you the most are the ones that give you the most reward!

Transforming Your Fears

I never realize how truly lucky I am until something very small happens and it sheds light on everything. One of the scariest symptoms I have with this thing called MS is my choking from time to time because I can't swallow properly. I remember the first time it happened and it really scared me. It was the final day of my jury duty for a murder trial, it was my birthday and also the day before Thanksgiving. It was about 8 years ago, actually.

The story goes as this, I was driving home from Jury Duty. I was in a crummy neighborhood on the southside of Chicago and I was eating a snack. The courthouse was not known for providing good food during lunch, nor was it known for its safe surroundings. Anyway, it was a cold rainy night, I was snacking on something and all of a sudden I was gagging on my food for some unknown reason. I wasn't known to carry my cell phone all the time back then, and my mind went to the worst place. I was going to choke and pass out at a stop light, someone was going to break into the car and steal everything, and I was going to get hurt... Silly I know!!! 

Back to the story, I actually thought I was choking because I was so sick over the trial that it was impacting me physically. I went home to a bunch of pizzas and cake, which I was extremely scared to eat because I was choking on everything. I choked down, literally, a couple pieces of pizza and some cake, and kept my insanity to myself. I figured it would go away once I quit thinking about the trial, and then it didn't... I simply kept a big glass of water near by to help me in the event I choked. And then one day, several months later, it was gone, no choking!

One of my best traits is that I am optimistic, except when it comes to my health that is. Everything is a big deal when I have an ailment. Not sure why this is, but it is. Anyway, recently I have been having trouble swallowing again, it has come and gone over the years, but this year it has been particularly bothersome. The moment it bothered me most was when I was in the MRI tube last night. I was laying motionless with my head strapped down, less than desirable music beating in my ears and the MRI machine making its typical banging noises. Saliva was gathering in my throat and I couldn't swallow. I, of course, went to that place where I was freaked out and figured I would choke on my spit and they wouldn't notice until they pulled me out of the machine 45 minutes later to inject the dye in my IV. 

And then I started channeling my best friend who always reminds me to chill out and take a step back. Next thing I know, I am still choking on my spit, but I'm not going to die anymore, but instead be a little uncomfortable for a short period of time. This is the same friend that reminded me, the day I was diagnosed with MS, that the only difference between the day I was diagnosed and the day before was that I had new information.

What I am really trying to get at here is that we have the power to transform every moment with our minds. We get to choose our emotional reaction (most of the time, I do like to cry A LOT) to physical circumstances. While I was hanging out in that MRI machine, I could have continued freaking out over my inability to swallow, and you know what? The problem would have likely gotten worse second after second. They would have had to pull me out of the machine and start all over again. A little positive thinking brought me back to earth. My swallowing problem certainly did NOT go away, but it also didn't get worse.

The reason I tell you this is because the power of the mind and the power of a friend's words can really make a difference in the long run. I am not always careful with my words, actually, I am never careful with my words, but there is likely good intention behind my words. Because of this, I listen intently to others because I know when they share information with me, it has the power to positively transform moments in the future.

Listen intently to your friends, as they may be saving you from an anxiety fed over reaction to an MRI machine in the future!

Excuses

When you are diagnosed with anything, from bursitis to dehydration to multiple sclerosis, the people who love you become experts on your disease. They know the most advanced treatments, the best doctors, all the symptoms of your disease, etc. The one thing they are not an expert on are the inner workings of your brain, unless you let them in. I have a friend who knows what makes me tick, and as much as I want to use multiple sclerosis as my excuse for things, she simply doesn't let me. As a matter of fact, if I even mention MS as an excuse, she calls me out on it and tells me to get over it. She is kinder than that, most of the time...

Anyway, one of my proudest achievements in life have been all of my athletic pursuits. I cross start lines and finish lines, I celebrate, hug my friends and spend some time celebrating. I have other interests that are of similar importance like my vegetable gardens, music and my craftiness. Although these other interests make me extremely happy, there really is nothing like crossing a finish line.

As an athlete with multiple sclerosis I live with extreme fear over the idea that I might not be able to run. FYI, that is a BIG might! So, I was having dinner with a friend a couple of months ago and she asked me why I keep running when, in fact, I have been struggling with running. I instinctively blamed my struggles on MS and she reminded me that my cycling is just as awesome. I agree!!! I love my bike, I love the adventures and memories and future adventures that I have planned with my cycling buddy/friend, thing is, I also love my running adventures and they challenge my body and my mind that no other sport has paralleled (except for that 175 mile bike ride).

So, I started thinking about that conversation in which my friend was offering me other options, I though WWSS (what would Sue say), and I heard an echoing in my ear that I was unreasonably allowing myself to blame MS for my running struggles at the time. After a lot of reflection, and a pretty good run this morning, I realize that MS is NOT to blame for everything... My mind is quite possibly more powerful, which is why my attitude is the best tool for moving forward with my athletic pursuits.

Just yesterday another friend of mine posted this video on my Facebook page, called Catching Kayla. Any time I start struggling both athletically or emotionally, I think it appropriate to remember the strength of Kayla and keep moving forward with NO excuses: