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:

The Medicine Debate

It is so hard to rationalize taking medication for something that you don't necessarily see immediate results. People with a disease the progresses over time may understand what I am talking about. Here's the thing... Although I am an expert on my body, I am not an expert on the autoimmune disease that lurks within my body. Who is the expert then? Well my medical team...

My initial conundrum with medication was that I have never wanted to be dependent on something... But there are very real and rational reasons why dependence on medicine is important. Take a diabetic for instance. Taking insulin is necessary or risk death. Taking disease modifying medication is necessary or risk faster progression. The same can be said for so many diseases...

So, I currently take seven prescriptions and two high dose vitamins on a daily basis. I would be lying if I said I didn't struggle with taking so many pills and shots every day. In fact, I would be lying if I said I was a perfect medication injestor... In fact, I put pills in packs and then look back on the week to see if I can find trends on days in which I forget my pills.

I have been known to have debates with one of my friends about the true necessity of the medication. I mean, why take it if I'm still a stumbling mess from time to time? Why take it if I am still crying, when it is supposed to help with my mood? Why take it if I'm still going to have those nagging head aches, be unable to sleep from time to time? She always grounds me and reminds me of the immense benefits of the medication.

Let me take a step back here for a minute though. Although my medicine is necessary to help slow down the progression of my 'disease', there is a limit to medication. For instance... One of my medications causes insomnia. Is it appropriate to treat a side effect of one medication, with another medication? Personally, I don't think so. I tried taking something for the insomnia and, although it helped me sleep, it certainly didn't help me stay awake during the day. Because of that, there was an option to take a medication that would help me stay awake during the day, but the side effects of that medication would have necessitated another medication. I drew the line and decided that I was over medicating. I instead have opted for other options to help me sleep. For example, a hot bath before I go to bed. Heat exhausts me so much that I could sleep all summer... Taking a bath is the perfect medicine and so I don't have to consider all the other options.

With all of that said, I have to say that we have to trust the experts in our lives. For instance, after my diagnosis I was struggling emotionally. Although I am an expert on myself, I have come to trust the people who I choose to surround me enough to tell me when I might need a little help. I wouldn't call it peer pressure, but instead trusting insight from those who truly care about me. I got some help... And I'm all the better for it now.

Similarly, I'm going to go back to my initial point in this blog. I'm not big on researching MS. I know what medications are out there, their side effects and their study results. That is really all I need to know. The other thing that my doctor told me, and that I have researched is that you slow down your progression up to 68% if you take a disease modifying medication from the point of diagnosis. I know I am over simplifying that statistic, but that is all I need to know.

So, what this all means is that, although I appreciate people's advice to try alternative options for treatment, I also put my trust in the experts and allow them to treat me as they see fit. After all, I will never be an expert on Multiple Sclerosis, but only an expert on myself.

I find myself writing this blog as a reminder to myself that medicine is NOT something to be feared, but another tool I get to tuck away in my toolbox to help me sustain my health in the long term. 

The Power of We

My team of WE (not including my parents)

Today was an interesting day. I went into it begrudgingly because I had to do something I didn't wan
t to do, but I gave myself an attitude adjustment on the way, which gave me permission to take a step back to learn something new.

There are so many thoughts and discoveries to process from today, but I'm going to focus on the one thing that is freshest on the mind at this ripe hour of 10:00 pm. I should first mention that this discovery came while watching the last two episodes of Parenthood this evening at my friend's house. TV is one of those phenomenons in life that has increasingly taken over simple evening chatter with friends, that perhaps used to be focused on the happenings of the day. Call this escapism, or what you will, but know that sometimes the biggest lessons come from those escapes.

If you have been following along this blog for the past couple of weeks, you likely know that I am in my month of no MS. I have been 90% successful, but the reality is, I'm learning that I will never get a 100% free month because there are doctor appointments that need to be scheduled, shots that need to be remembered AND taken, and medicine that needs to be picked up from the pharmacy, just to name a few realities. However, on the obsessing front, I've been pretty good. I've only made a couple of jokes and my friend here in cbus has given me permission to talk when she can see that I am having an internal struggle that necessitates a few sentence rant.

Anyway, back to Parenthood... If you watch the show, you know about the family's supportive nature, but what you also get to see is how people can all react differently to the same situation. One of the most recent struggles on the show involves the dad needing heart surgery and all of the children have different struggles with the potential loss of their father, but what really impacted me was the interaction between the father and his daughter-in-law. Zeek (dad) and the daughter in law both have experienced significant health crisis throughout the course of the show. Tonight they bonded over the fact that they couldn't stand how their supporters would say WE will get through this, WE will figure this out, WE so on and so forth. This discussion was very interesting because I oddly find comfort in the exact opposite, and can certainly appreciate why the supporters are compelled to use the word we when addressing the issue of a health problem.

The fact of the matter is I know that I can use all the support I can get, and when someone says WE when talking about one of my problems, it makes me feel less of the weight. I, in fact, love when people say 'we' and thrive on knowing they are there. For example, I know I will never have to face a brain doctor appointment alone because 'we' will go and take in all the information, and 'we' will process that information in a positive way. I also know that 'we' will deal with the emotional challenges, and 'we' will figure out the finances, and 'we' will find a treatment that will work for the side effects. This is a true testement to my friends and family. They give me the gift of WE every time they use the term.

For those of you who may be out there struggling with people saying we when you are the person who has to physically and emotionally deal with a chronic disease, I want to remind you of something very important. People may be saying 'we' so that you don't feel alone, but more importantly, the people who are by your side are also struggling and may be having an emotional reaction. Because we are in the situation together, albeit from different positions in the doctor's office, if we are lucky, we are surrounded by people who are willing to take on the new information with us. Embrace the WE and let people lift you up with their love in the way they know how, and guide them to enhance that support by teaching them what you might need.

Afterall, WE are lucky to have the love and support, and that is one of the most valuable lessons I have learned from MS.

Next week, watch out for another post about my discoveries from today!

The Elephant

I'm in the sixth day of this little game I play with myself sometimes called MS Free time. What might MS free time entail? It is just a period of time in which I stop all talk about MS, and resume my life as if I was never diagnosed. Simply put, I just quiet my loquacious nature for a bit. I don't totally ignore MS though... I still take my meds. Oh, and I had a brief conversation with my mom about it today, but that was less about my MS and more about emotions surrounding chronic diseases.

I have successfully gone MS free on several occasions, one of which was my trip to Canada in the beginning of the summer. So why am I blogging about it then? Because, as my mom said today, I don't know how to quiet my mind. My friend and I talk about my inability to relax, I disagree and was telling my mom I am great at relaxing, which is true, but only physically. I mean I can ignore dishes in my sink and the ring around my bathtub for weeks out of my 'need' to relax, but my mind NEVER settles and relaxes. The time I was able to best settle my mind was when my buddy Mike coaxed me into practicing Buddhism. I'll tell you what, there is nothing like chanting away, in a language that you don't understand, to pull you away from your mind. Focusing on what syllable comes next is about all my mind can handle when I am sitting in a room with a hundred people chanting. It is somewhat soothing, but I would always get so focused on the words because I never wanted to mess up my neighbor with my bad pronunciations of the sacred words my neighbor was saying, and actually understood.

After my brief conversation with my mom today, I am understanding that being in a room with a person who has a chronic disease can be very similar to my experience in the Buddhist temple. I never wanted to disrupt the rhythm of the person sitting next to me, to gain a better understanding of the words, because they were so focused. The reality is, that person would have probably welcomed my questions and curiosity because I would have been trying to gain insight on something that is so precious to them.

You see, having a chronic disease is like walking around with a big elephant sitting on your shoulders, and it takes a special person to approach you and knock that elephant away. Last week I had the pleasure of spending time with a friend that I don't get to see or talk to very often. This friend asked me questions that may have been perceived as uncomfortable to the closest eavesdropper. The questions ranged from relationships to MS (which actually is best described as a relationship in my world), and I graciously answered every question, and was actually delighted to have someone ask the questions that very few will bring up.

So what does this all mean anyway? Well two things. The first is, if every you approach someone who tells you they have a chronic disease, don't feel like you can't ask questions and explore their situation. They likely want to talk and are more than willing to share their experiences with you. Not to mention, you might get to hear them talk about the fact that they initially thought they had formaldehyde poisoning, NOT MS...

Second lesson is really specifically for me: The MS breaks are necessary. This past weekend, I had the most fun having carefree conversation while installing doors at my friend's house. I think the reason I was able to let my guard down and just have fun making mistakes and a mess at someone else's house is simply because the elephant does not exist with this friend!

So, here's the thing. I'm not scared to talk about it, neither should you. Let's work to turn that elephant into a tiny little mouse! 

The Fear of Loss

I have been told that I don't know how to live in the moment because I am always making plans for the next moment. I like to argue that I am good at living in the moment, except when I am planning for what comes next. What is the difference? I don't know... Do you live with your cup half empty or half full? Same thing, right?

Well, I'm learning that I am somewhat wrong. I still stand by the fact that I live in the moment, afterall, I will stop to appreciate the snowfall, stars in the sky, the most recent household accomplishment, but that is between planning away my life.

When you have MS, there is this underlying knowledge that you may someday be disabled, thus a fear may develop. Is it rational? Some may argue that it isn't rational, afterall, I can walk out the door on any given morning and get struck by a bus, or fall and break my back, thus resulting in the exact same affliction of MS, potential paralysis. The difference between these circumstances is that when you have MS, you have a ton of time to ponder the life of being disabled, or the loss of memory, or the loss of some other bodily function. When you have a tragic event that happens in an instant, you don't even know it is coming and then are faced with coping after the tragic experience.

Wow, just stating that makes me realize that knowing you have MS, and living with it daily, really is simply a gift. It provides the opportunity to cope with some of the emotions, prior to the potential event. Again, glass half full, here!

And I digress. The reality is, it is extremely hard to live in this moment, when you know there is a potential of loss. Take that relationship you may have experience, that you really want to be secure in, but you aren't, so you are always afraid it is going to go away. Have you experienced that phenomenon? I certainly have, but have come to realize that the people I keep around now, are trustworthy, otherwise they wouldn't be around. But if you have experienced that, you may have found yourself constantly internalizing what you might do if you lost that person. Again, MS is exactly the same. Pondering the what ifs, rather than appreciating the right nows.

The fear of loss is a profound obstacle to deal with. I don't know whether I have to deal with the fear of loss because I have lost something significant in my life? Or simply because I love what I have in the present and I can't fathom my life changing?

I need to give MS, technology and medicine a change!!! Because regardless of all that I say in this post, I do know the moment you quit fearing loss, whether it is the loss of a person, thing, ability, skill, you open yourself up to the possibility of appreciating the moment that is right in front of you. This is something I struggle with daily BUT I will never never give up!!!

Keep Trecking

Ever hear the quote, "A body in motion, stays in motion?" I live by that these days. My friend Sue and I were running on Sunday, while we were running, we were having a conversation about my gait, and how it changes step by step through a run. My first step may be strong with both legs fully engaged, and my final step, my left leg can be fully disengaged and dragging behind me. I have come to accept that my body is the perfect specimen for Newton's Law of Motion.

One of the things I am learning from reading various threads in on-line MS support groups is that people who have stayed active over the years after being diagnosed with MS, are still active. Their activities may have changed, and in some cases change day to day, but ultimately, they are able to maintain some semblance of activity. I am now convinced that I need to keep this body of mine in motion.

Here is where Newton's Law really comes into play for me. Although Newton's law states that an object will remain in motion at a constant velocity, it also states that an external force can change that motion. MS is that external force that impacts my motion. Yes, I realize that my Myelin (or lack there of) is physically internal, but it is not something that I have control of.   In my conversation with my friend on Sunday, I told her that rather than stop running, because of the physical challenges I experience from MS, I need to continue running so that my left side doesn't atrophy, and figure out a way to strengthen my body to accommodate the loss of movement. Will that be physical therapy? planks? using my arms more? I honestly don't know. But it is all a learning process.

Pre MS, I considered myself an athlete. Everyone gets to define the term athlete, and according to my definition I qualified. As anyone with a chronic disease knows, after your diagnosis you are faced with redefining yourself, right or wrong. The honest truth is that, after diagnosis you truly are the same person, right? I think I am, but accepting that is a struggle for any human being, I think...

While I have my own little internal struggle over the new trajectory of my life, I can tell you that the best thing I can do for myself, is keep doing. I read so often that people with MS simply give up. I will admit, my house cleaning and laundry skills have taken a hit over the last year, and I am 100% content blaming it on MS, but the reality is, if I keep doing what I love, I will be able to better adapt what I love to conform to my life's daily changes. MS has also taught me a lot about who I love, what I love and what I love doing... More about that another day!

So, tonight I will do a pile of laundry and maybe do my dishes, because it needs to be done. However,  I will hang some doors at my friends house this weekend, because I love household projects!!!

Basically what I am getting at is that we all have control over our movement forward in life, and I'm not only talking about our physical movement. Sure we may have physical barriers, but that is when we adapt, learn the new process and move on. In the words of my FAVORITE sister in law... I simply will 'Keep Trecking'.

One of my favorite pictures of me and my sister-in-law!

Lessons from the Kids

The Tree House!

I spent the week at my sister's house, and pre-dinner they either say a prayer, say itadakimasu or do gratefuls. I particularly enjoyed the gratefuls because I got to hear about the things that really interest my niece and nephews, it also gave me the opportunity to let them know how much I enjoyed my time with them.

It was an interesting week because two of the kiddos learned that I have Multiple Sclerosis, and the other one learned that I take a shot every day. My oldest nephew asked a couple of questions, but didn't really show much interest, and my other nephew asked a bunch of questions and then moved on with the activity for the day. My niece was really only interested because she saw the pile of pills and the shot I take every day laying around the house, without any regard, on my part, to hide it. You see, they are all old enough to know they shouldn't touch pills, and so I could leave them around and talk about them from time to time.

So why is this all significant? Well, my biggest fear in sharing that I have MS with people, is that they will see me differently, see me as disabled or something. I'm lucky right now and have no major physical issues (except after exercise) and so it is frustrating when others put limits on my abilities, rather than me putting limits on myself, based on how I know my body. The beauty of these kids? Well, they are all very smart and may have done their own research by now, on what MS really is, but none of them really cared or blinked an eye at all. As a matter of fact, they instead 'ordered' me into the tree-house which is at least 8 feet off the ground on one side, and then put me on another ladder once in the tree house (another 4 feet at least) to install the roof.

These kiddos taught me a lot! Truly not hard to believe, because they are three of the five most brilliant kids I know, but they reminded me that I should not put limitations on myself unless there is a real barrier. Two inspirations for me are the dudes who wrote Run the Edge, and they say, why put off tomorrow, what you can do today? Anyway, for those of you who happened upon this page because of MS, you may not know I am an athlete, and this summer I have struggled a bit. I haven't struggled getting in the miles on the bike, but miles on my feet? A whole different story. But by reflecting on the kiddos not caring, I had to take myself back about 10 steps and take some limitations off of myself. I have been planning to run another half marathon next spring but was going to hold off on registration but today I said forget that, and took the plunge and registered.

Basically, what I am getting at here is this: We set our limitations. I do believe there are real instances in which we have to say the dreaded word can't for VERY real reasons, but until that happens, we all need to move forward.

Looking forward to another one of these pics soon!!!

Up Next: Keep Trekkin (inspired by my sister-in-law, but that is for next week)

A Different Kind of Blog

With my awesome MS supporters at Pedal to the Point, a ride of BikeMS. 

I am an eternal optimist, and 90% happy. We all have moments of sadness, and some of us even bouts of depression; how you deal with your situation defines you as a person, in my opinion. One of the saddest things I have seen over the past year, since I have been diagnosed with MS is how people deal with this disease. I by no means have any right to judge another person's journey, but I can reflect on other peoples' journey and decide whether I want to apply some of their lessons, wisdom, statements, etc. to me.

One of my friends listened to me cry for about two hours last night. You see, I am a runner and it was too hot to run. What I didn't tell my friend is that I had significant physical challenges throughout the day, and didn't have any business running last night anyway. But the tears were all influenced by things that really don't matter when all is said and done! Or do they? I mean I cried about them...

In having this conversation with my friend, I talked to her about how frustrating it has been for me to participate in on-line support groups for Multiple Sclerosis and I see language that I perceive as so negative. You see, I am not a victim, and I don't believe that I am sick or that my life is any worse or better than anyone else's life, but I do know that my attitude carries me through every moment!

The things that triggered this conversation were two statements that I have read in recent months:

1) I have seen several people with MS state they are sick. I also had one person say to me "I'm sorry you are sick." Saying that MS = Sick has really challenged my brain. I honestly don't view people who have MS as sick people. I certainly know that we have different levels of progression that challenge us, but for me to say I am sick is almost like saying an amputee or a person born with a physical impairment is sick. Just something to ponder. I will unlikely say I am sick unless I have the flu, or some cold, or a terminal illness.

2) Another thing that has really challenged my brain, is my ability to immediately blame things on MS. I have thankfully gotten away from this, unless I'm joking with my good friend about my memory (I have a mind of a steel trap is what she says), but I steer clear of blaming MS for my regular life. The sad reality is that I have been a 'victim' of loss and clumsiness since I came out of the womb. Perhaps there is a medical reason for this, but I didn't have a medical reason losing my keys and cell phone all the time since I began to drive and got a cell phone, until last year? Not likely!!! Unless something truly impacts the function that I am used to today, or even a year ago, suddenly, I simply need to accept it as me being me. There is however a very fine line of knowing when to get help when you have MS. For instance, when I lost my vision in my right eye last year? It was totally appropriate for seeking out help. When I fell off my bike because I didn't unclip my shoes from my bike pedals? I would call that pure accident.

Basically, my thoughts have been challenged, and I see some of this language and blaming as a barrier to my own recognition of my strengths, and I seek out positive outlets ALL over the place for my mental meandering with MS. Aside from one of my favorite bloggers, Dave, over at ActiveMSers, I have not found what I am looking for, and my friend challenged me to change that. Now, she didn't tell me to go and start a blog, but since I already blog, I figured it was a natural fit.

What do I plan to get out of this blog? I plan to express my positive opinions about MS and how it can/has been a blessing in people's lives. I'm going to talk about my journey and struggles. I believe, with every struggle, comes enormous life lessons that can positively impact a person's life. I want to share some of my less private stories (some things are left between me and the world, or the person I shared the time with), and share with people my journey, because although having MS has impacted and will continue to impact my life, the strength I have gained from this little diagnosis has been a gift.

What do I want you to get out of this blog? Well, whatever you want. I'm doing this for me, but my hope is people will find some positive energy as they are struggling with their diagnosis of MS. Oh, and my friends can laugh at my story telling a little more1

Come along for the ride. In the beginning I will commit to a post every other week, and see how that goes! Share your thoughts, your interests, your stories! In life we only have eachother to learn from...