The Turning of the Seasons

The leaves are changing color and dropping from their trees. The temperatures at night are falling below freezing. I've put my surfboard away for the season and I've started focusing on writing music. I've reopened my membership to [Planet Fitness] so I can continue to run through the winter.

My goals for January 1 have been updated:

- Be able to run 5 miles in under 50 minutes
- Purchase the [Canon Rebel T3i] and start producing a YouTube miniseries
- Complete the Calamari Special debut album.

My friends have been helping with everything and it has been so great to have them around. I helped my good friend, Jack, finish his solo album "[Singer/Songrocker]" which is available for listen/purchase. I highly suggest giving it a listen!

Now I'm gonna be able to focus on my music and Jack has agreed to return the favor and lay down some epic guitar tracks for me. Here is something I'm working on right now... I can't even imagine how it is going to sound once Jack puts his guitar talent in to replace mine.



Cassy and I have been putting plans together for our wedding which is slated to take place in Summer 2014. We haven't set a date in stone yet but are talking to venues, looking at rings, going to bridal shops... you know... the fun stuff!

Winter is always a good time to get caught up on everything that I let slide through the chaos of summer. I will keep everyone up to date as much as possible as things develop.

On an MS related note... I'm still taking Copaxone, am living Symptom Free, and am scheduled for my next MRI in February. We will see how that goes!

Thanks for stopping by!
NickWithMS

To be 27

Today is my birthday. A little after 5:00 PM EDT, I will officially be 27 years old.

My goal was to run a 5k in under 35 minutes before I turn 27. This morning, Mike and I did it in just over 36. I missed my goal but I ran farther and faster than I would have ever been able to at the beginning of July and of that I am proud.

People keep telling me it's a long process. I'm realizing this.

I took the day off work to spend time writing and recording music for Calamari Special. It is almost 2:00 and I haven't started that yet.

That's my next mission.

Thanks for checking in!

Nick

Surf MS

So!

A couple of things have happened recently.

First - I created a YouTube channel for NickWithMS which will showcase videos about what I'm up to with my #FU2MS, #SurfMS, and Calamari Special projects. So check it out. youtube.com/nickwithms

 Here's a video of me explaining what I'm up to.

Also, I would like to reinvite people to visit my Facebook, Twitter, and Website:

www.facebook.com/nickwithms
www.twitter.com/nickwithms
www.nickwithms.com

I got my surf board from Greco Surf this past weekend and took it for a test drive yesterday with Jack and Shannon.

This was my first time surfing.

It was high tide at Old Orchard Beach, ME and the waves were only about 2 feet tall. That being said, we had an excellent time. Essentially, we invested in 8' boogie boards. With the tide being so high, even if we were able to stand up, the ride was over by the time we did.

We're going back out Sunday to try again. Low tide is just after noon so we should get some good rides in!

Here are some photos of Jack. I was the one with the underwater camera, so I didn't make it in to any of them.

There will be a video on the YouTube channel about the day called "Wave of the Day."

Keep checking back!

-Nick

Milestones

I woke up this morning and said to myself "How far can I run?"

My goal is to run my 5K on Sept 1 in under 35 minutes. I figured I would run as much as I can and walk when I need to. I just wanted to see how long it would take me to finish a full 5K today. From here, I can push myself harder and longer each practice until I get my time where I want it.

I mapped out my course - down my street, out of my development, down Rt 1 and back.

5K.

3.1 Miles.

Boom.

Let's do this.

I started out running the first Mile just fine. At that point, the course turns in to a literal uphill battle - Climbing about 70 feet in altitude in just under 1/2 mile. 

It was .42 miles of death. 

I had to walk.

At the top of the hill, I started running again until I hit my half-way point.

I turned around and ran back toward my house - back down the hill and back toward my development.

2.5 miles in, I couldn't run anymore.

Again, I had to walk to let my muscles rest for a minute.

I walked to the end of my development and ran the rest of the way home.

5K complete. 

Time - 34:31

I stopped to take 2 breaks and still beat my goal.

My goal clearly isn't hard enough

Let's see how fast I can do this.

New Goal: 5K in 32 minutes.

Boom.

Fear the Future

I attended another complimentary dinner provided by Teva Neuroscience. This one was at the beautiful Hilton Garden Inn in Freeport, ME.

There were two guest speakers at this one. A neurologist from Southern Maine Medical Center who was really informative and a personal trainer/motivational speaker from Florida who was also quite informative and a lot of fun to listen to.

The neurologist - whose name I can't remember - spoke about MRIs and how they're used as tools in aiding, fighting, and tracking MS progression. He educated us on the importance of Contrast MRIs using Gatalidium to show active lesions and breakdown in the blood/brain barrier. Essentially, it works like this - 

Gatalidium is injected in to your blood.

The MRI then tracks to see if the compound is breaking out of your blood-stream and entering your nervous system.

On an 'normal' person without MS, the Gatalidium shouldn't be visible at all in the brain. When it is, a doctor can easily see where the MS is 'flaring up'.

Also, since the program was presented by the company which manufactures and distributes Copaxone, there was also information showing how Copaxone helps treat people living with Relapsing/Remitting MS.

Jeff, the Personal Trainer/Motivational Speaker has been living with MS for quite some time. He's been on Copaxone since 2000 and is in great physical and mental shape. He, like me, jokes about how the disease affects him and makes light of his diagnosis. Some people don't react well to this.

I noticed a number of people in the audience who took every chance they could to "play the victim." When Jeff brought up the topic of Support and the tendency to push away help from friends and family who want to help, one woman interrupted to say that, after her diagnosis, no one wanted to talk to her at all.

Now, this may have been true. I don't know. But it really seems impossible that someones friends and family would, in a time of fear and need, turn their backs on someone they care about. Jeff made a point to say that it can seem that way because we simply are too proud to accept help from people and chose to ignore it in many cases. She was quick to correct him.

Again, I had the feeling of "I'm not these people". Cassy and I were the youngest ones in the room. I was surrounded by people who had been diagnosed 10+ years ago and who were already well in to their 30s, 40's and 50's by the time they caught the disease. They mentioned how they can't move around; how their fatigue is so bad that they can't walk up the stairs; how their lives suck and there's no hope for them.

Fuck that attitude.

I feel bad for these people, I really do. I don't, however, support negativity. Your life is what you make of it. Your limits are only defined by your effort to overcome them. Not everyone can run a 5k, I understand that. But if you can walk, you can try.

Jeff made a point last night. He asked an elderly woman how far she thought she could walk. Her response was "to my walker."

He said "If you can walk to your walker, you can walk anywhere." So he made up a game and tricked her in to walking around the block. 

I don't know how much truth there is to this story, but the message is clear. Stop telling yourself that you can't do something and just try to do it. Even if you were right. Even if you can't do it. You tried and you did a hell of a lot better than you would have if you just sat there and did nothing.

Set a goal and achieve it. You don't have to achieve it right away, just try your best and don't quit until you're satisfied with the results.

I'm going to run a 5k on September 1st and everyone knows about it. It isn't a goal for me, it's a reality.

I'm not these people and I hope never to be. MS is a disease of the brain. The best way to fight it is to tell your brain that you can.

Nick

I haven't written anything for a while in here... what I am about to say is almost identical to my last post...

Today I ran 2.5 miles.
Just over a month ago, I couldn't run 1.

I feel incredible.

I've lost 5lbs since the beginning of July simply by running and reducing the amount of carbs I eat. I didn't cut them out toally. Are you kidding me? Do you know how many carbs are in beer? Eff that. I'm not cutting out beer.

I've done other things. I don't eat bread... except when I decide to go to Texas Roadhouse for a Steak Salad and end up eating 4 of those fresh rolls with the honey butter...

I'm a weak human being...

I've replaced pasta with zucchini. It isn't at all the same... but it is equally delicious. I realized that I don't really like pasta that much anyway. I like the shit I put ON pasta... and Alfredo, Tomato Sauce, and Pesto taste equally good on Zucchini as they do on Linguini.

I've created a website everyone should check out.

NickWithMS - Home

I'm going to register the domain NickWithMS.com but I haven't yet.

I ordered my Surfboard from GrecoSurf.com and am incredibly excited to start learning to surf... aka falling in the water a lot...

That's about it for me right now. I'm stuck at work till well past 2am tonight.

F**K

Nick

Progress

20 days ago, I texted Becca telling her that it was all I could do to run .75 miles. Today, I ran 1.5 miles without stopping to walk, stretch, or take a break of any kind. I could have kept running, but decided to walk the remainder of my distance today as not to overwork my muscles and cool down.

In 20 days I more than doubled my muscle endurance.

Today, my body did something it wasn't even close to being able to do 3 weeks ago.

That is one of the best feelings in the world.

Life Rules

So, this idea was started by my buddy Kirk at some point. When ever someone would state a fact, it would be labeled as a random Life Rule...

For instance. One time we were trying to move a large piece of furniture (an entertainment center or something... something with a lot of surface area). It was clearly hard to slide across the floor so I made the comment "There's just too much friction!" to which someone replied "There is never too much friction." That soon became "Life Rule #12: There is never too much friction"

There were not actually 11 other life rules... it was just a fun game to play.

Life rule #1 was the only one that had a static number. I decided to build on this and come up with good life rules to live by, starting with Kirk's original #1 rule.

Keep in mind, these rules are not listed in order of importance. This is both because a) I don't care and b) comedic effect. When I hand someone a bottle of water and say "Life Rule #5: Hydrate," they normally say back to me "What is life rule number 1?" to which I reply:

Life Rule #1: Always Check Your Pockets on Laundry Day

Anyone who has ever heard a strange sound coming from their drier and simultaneously wondered where the hell they left their damn cell phone only to pry open the door in a state of panic hoping it's merely the sound of their kitten being smashed against the drier walls and not that of their beloved iPhone knows this lesson all too well. Luckily for me, the worst thing I've ever put through the wash was my Passport.

Life Rule #2: Show Up; See What Happens

This is an important rule. Often times, I know I need to do something or be somewhere and I'm just not in the mood to do it. The fact of the matter is, I have no reason not to participate other than laziness and apathy. I used this motto a lot during College. Many times, I couldn't find the motivation to get up and go to class so I would ask myself "What am I going to do if I don't go?" Usually the answer was "Do nothing and be bored" so I would end up going and realizing that most of my friends were there anyway.

I find people put so much emphasis on preparation and scheduling when, in all actuality, most things only require you to show up. Things will work out. Things always work out. Just show up and see what happens.


Life Rule #3: Never Assume Anything

The original name for this rule was "You Never Know." This rule came in to existence as a joke in 2006 when I was unpacking my clothes in my stateroom on a Family Cruise Vacation. My sister asked me why I packed so many hats and my response was "Well, you never know!" As it turned out, I lost one of my hats in a gust of wind from the ship and I is probably still finding its way around the Caribbean right now.

The truth is, we never know. It is human nature to draw conclusions, deduce, and assess. However, I've found people argue over so many things that either can't be proven or about which they are simply uneducated. Granted there are certain things that we can indeed say we know. However, even if I know someone is wrong, I try to take the time to listen to their argument. What if the Earth really does revolve around the sun? What if sickness is really caused by microscopic organisms and not Evil Spirits?

Every day someone is going to tell me that something I know to be true is incorrect. One day, they are going to be right.

Life Rule #4: Don't Forget to Breathe

This one seems so stupid. But seriously, I often find myself getting so stressed out or worked up about something that I hold my breath and have to remind myself to breathe.

This doesn't just mean physically moving air in and out of your lungs by constricting and relaxing the diaphragm. It means to take time and space away from something before it drives you insane. Taking time to "breathe" and think something through and knowing when to walk away from something for a few minutes has made my life infinitely less stressful. With very few exceptions, everything can wait 60 seconds. Sometimes, we have to remind ourselves of that.


Life Rule #5: Hydrate

Again, this one seems like a dumb thing to write down. I don't have a metaphor to go with it. This one is as simple as it sounds. Drink plenty of water. I never drink enough water and find myself overly exhausted, especially on hot days. Put down the Starbucks for a minute and have a bottle of water. Your body will love you.

Social Anxiety/Depression

Ok... So I know that depression and anxiety are linked with MS. However, I'm a comedian. I'm above all that, right?

Yeah, that's what I thought too. This is exactly the opposite of what this blog was supposed to be talking about. This was gonna be all happy and comedic and basically me saying FU to MS and showing the world how I'm so much different than all those middle aged people who just complain about their symptoms all the time... Karma is such a bitch.

Tell me if you can relate:
I'm usually the center of attention: Overflowing with charisma, charm, and good looks (sorry ladies... I'm engaged) I'm a stereotypical Leo for those of you who follow the zodiac (though, my birthday technically puts me as a Virgo... are you kidding me?)

My Neuro told me when I was first diagnosed that these kinds of feelings would be normal and prescribed me Lorazepam to help with feelings of anxiety. 5 years; no problems. Recently, however, I've found myself getting anxious in public settings.

Me...
Mister Attention...
Mister Look-at-me...
Mister I-wish-i-could-be-a-professional-stage-actor-just-so-everyone-would-notice-me.

That last one is really hard to fit on a Maine State Driver's License.

These feelings aren't me.

I find myself dreading going to family dinners when I know all 11 of my brothers/sisters/in-laws/significant others will be in attendance. I'm stressing out about going on vacation next week because I am afraid I won't be able to relax. How messed up is that? I'm stressing about about a vacation... Even as I write this blog, thinking about all these things has made me need to resort to popping a Loraz... This is getting out of hand...

My mother and brother both have been diagnosed with social anxiety disorders and are both being treated for them.

I'm not them.

I've always been the opposite of them.

I'm the get-out-and-do guy. I'm the one who organizes flashmobs and plays in a band and wants to be noticed.

When the hell did this happen?

Social events are how I relieve stress, not the cause of it.

Sound like something anyone else can relate to? Is it my MS, or my family's history of being socially inept finally coming out of my DNA to fuck with my life as I know it? Please tell me it's my family. At least then I don't have to blame myself.

Week 3 - Not setting any world records

Ok. It is Thursday of Week 3 of my 5K training. DAMN! This is much more difficult than I had originally thought. I knew it would be a challenge, but I figured it would be a slight challenge only toward the end of each run. If there is one thing I'm not good at, it's being wrong. GOD DAMMIT I HATE WHEN I'M WRONG! 

I've been logging all my runs/walks with the RunKeeper app for iPhone. Yeah, there's an App for that... It has been wonderful at tracking my times, distances, and average pace. As disappointed as I am with my average times and embarrassed as I usually am to post them on my Facebook, I am incredibly happy to see that my times are actually improving as my distances get longer!

I just ran 1.5 miles around my neighborhood. I had to stop a couple times to walk for about 1/10 mile, but I was able to run most of it. This time last week, I couldn't even finish out a full mile. Don't make fun of me, ok. I'm not a professional runner... yet.

It has been quite rewarding to see how my average pace has improved over the past few weeks. On June 28th, I was scheduled to run/walk the same 1.5 mile course and had an average time of 14:13/mile. Today, I did the same track with an average time of 10:56. As I said, I'm not setting any world records but I took 3:19 off my mile. That is a huge improvement for me. At this rate, I will probably end up having to walk a portion of my 5K, but I'm looking to finish in less than 35 minutes. If I can do that, I will consider it a success.

Next week, I am on vacation in the White Mountains so we'll see how much running I'm able to do.

Nick

Week 2

I'm in my second week of 5k training. F**K, I'm out of shape... It's not till you realize that you can't even run a mile that you realize you REALLY need to stop playing XBOX as much...

Even my kittens play xbox. Don't judge me.

Luckily, Becca's plan is a gradual increase to the 3.1 miles so, while each week gets harder and makes me want to end my life at the beginning, it's only ever SLIGHTLY outside of my comfort zone which keeps me feeling challenged without feeling overwhelmed or frustrated.

I've finally gotten in touch with the Maine Chapter of the NMSS and Calamari Special will be playing at an event in September. We're very excited about that. We're going to be working hard to make sure we have a debut album to have ready at that show. I posted a quick demo of one of the songs on my facebook page... It's not excellent... It will be better on the album, I promise.

Stay tuned!



Epic Vivid Dreams

I've switched from taking Copaxone in the morning to taking it right before bed. I did this for no reason other than it fit my schedule better.

Since I've started doing this, my dreams have become these Epic Adventures which would even make Homer jealous. I decided to write them down because 1) I don't want to forget them and 2) I'm wondering if anyone else has had a similar experience with Copaxone before bed... also these are ridiculous and hilarious and I thought maybe you would be entertained.

These are two dreams that I've had the past two nights.

Epic Movie Adventure

My family and I went to The Olive Garden for dinner following the suggestion of the Front Desk clerk at the hotel we were staying at. My friend Sara apparantlly used to work at this Olive Garden and the bar tender mistook my girlfriend for Sara and said "Uh oh, everybody! Sara is in the house!" My mother took this the wrong way and thought the bar tender recognized me and assumed I was cheating on Cassy with some girl named Sara who I had gone out with to that restaurant earlier. This started a big fight between my mother and I at which point I got frustrated, threw my water on her, and walked out. I decided to just go for a walk to calm down.

As it would turn out, we were staying at Universal Studios. I happened to leave the restaurant at exactly the right moment to wind up as the star in a Movie Action Effects demonstration. As I walked down the street, cars were crashing into busses, buildings were exploding all around me, groups of people running away from rooftop snipers... I realized this was all just an effect demonstration so it didn't seem to bother me. I ended up playing along and helping the would-be sniper victims find a place to hide in a bank only to realize the bank was being robbed and I just brought everyone in to a building which was rigged to explode. I was able to make my escape through the bank vault and down a Chuck E. Cheese style spiral slide... Classy, I know.

I continued walking through this Epic Effects City where I crossed paths with James Valentine - The guitar player for Maroon 5. He asked me if I needed a lift and offered me a ride in his Limo... because clearly he just takes a Limosine everywhere he needs to go. Clearly I wasn't going to turn down this opportunity so I hopped in and we drove around for a while. During our conversation, he asked me if I wanted to come jam with his band on the other side of town. Again, I wasn't going to turn down the opportunity to play music with Maroon 5, so we drove over to their practice studio where I was happily greeted by all memebers of the band. All members that is, except for Jesse Carmichael - Their keyboard player. He was not happy that I was there at all. In fact, he did everything he could to make my experience there hell. I decided I didn't wanna pull a Yoko Ono and be the reason that the band fights and breaks up so I decided to leave that studio and cary on with my adventures around the City of Chaos.

After some more wandering, I found myself at a screening for the second episode of HBO's "The Newsroom." Of course I wanted a sneek peek at the upcoming episode so I walked in where I found the rest of my family, my girlfriend, and her twin sister Suze. Since I was no longer frustrated and angry with my Mother, we all decided to walk in and watch the screening together.

The entire cast and crew of the show was there - Jeff Daniels, Aaron Sorkin, all the producers, actors, camera people... everyone. I was really excited to have this opportunity! Strange Opportunites seemed to be the theme of the night. Everything was going well except that Suze - not having seen the first episode - didn't understand what was going on and wouldn't stop asking questions. Everyone in the theater was getting very annoyed and I kept telling her to be quiet but she wouldn't stop talking. Again, I got very upset and embarassed so I walked out. Cassy followed me out and kept appologizing. I explained to her how rude and embarassing that was and why I left. At that point, my friend Jack called and woke me up.

The End of the World

I was enjoying my night watching the stars when a Meteor Shower started. I watched for a while but quickly noticed that the chunks of rock falling from the sky were getting bigger and bigger. I quickly decided to run down to the basement and take shelter just in case one of the falling pieces of firey death decided to land on my house. It was lucky I made this decision because immediately after entering my basement, the house started to fall apart. I first took shelter under a table saw but decided that would be too risky incase it collapsed. The only other sturdy structure in the basement was the tank of heating oil standing against the wall. I crouched down under that as my entire house crumbled to the ground around me.

After realizing that I was not injured, I got out of the demolished wreckage to make sure my friends and familiy were alright. I enountered Suze and her boyfriend Raleigh. Raleigh is in the Army Reserves and his deployment was changed to helping and rebuilding from this small disaster. I'm not sure why, but for some reason he was expected to walk across the state to help people in need rather than being driven/flown by the military. I decided to walk with him since I needed to get across to see my family anyway. While we were walking, he got a text message saying that there was a much larger meteor coming and it was expected to impact just outside of Portland. I figured this would be a perfect photo op so I drove to Portland to take photos of the meteor as it entered our atmosphere. I, along with everyone else, was expecting it to impact on land just North of Portland. However, it ened up moving out to see and impacting somewhere in the middle of the Atlantic Ocean beyond the horizon.

I quickly realized this would cause a Tsunami and drove to my parents' house to warn them. I found my parents at their house completely unaware of the earlier shower or the impact off the coast. I warned them about the incoming Tsunami and told them to stay at their house as they are at the top of a hill in a Coastal Town in Maine. I assumed she lives at the highest point in the area and would be safest at her house. I also remembered that my college friend, Colin, lives in a treehouse through the woods. I thought I should walk through the forest and find him to warn him.

I knew it would be a long journey to his house so I tried to move as fast as possible. I didn't know how much time I would have before the flood arrived. As I made the trek through the woods, I came through a wide open field where I saw a man sitting on a bench. The field was packed full of wildlife - African wildlife for some reason... this is a dream, ok? I decided that the man wasn't important and continued through the field and back into the woods. As I continued through the woods, I noticed monkeys hanging from the trees. Only, these monkeys weren't hanging by their tails and feet like one might expect. No, these monkeys were tied up at the tops of the trees with rope as if someone trapped them there.

This started to make me worried as I didn't know if I was to be trapped next. Just as I said this, a really tall Jamacian guy and his entrourage came walking through the path with rope. I assumed they were the one's tying up the monkeys so I ran off the trail to evade him.

I was able to make it through and arrived at Colin's treehouse. He wasn't home. I climbed up in it and figured since it was such a long trip back, I'd just sleep in his treehouse that night and leave the next morning. For some reason I lost the urgency of the approaching Tsunami.

The next morning, I went back to my parents' house just as the flood was arriving. The water flooded the entire area. At this point, I was asked to create a map of the east coast and highlight all coastal areas with an elevation less than 100 feet so that the Disaster Recovery Team and Army Reserves could easily see the areas affected by the flooding. About half way through creating the map, my cat woke me up so I will never know if they were able to repair the damage.

Sorry for the anticlimactic endings...

But then I found $5!

#inspiration

So a lot of people have told me that my story, my humor, and my point of view have inspired them. Great... Way to put the pressure on me to be inspirational. I'm glad my way of life has given hope and happiness to others who either live with MS or live with someone who lives with MS (those are the people who are truely inspirational. I don't know how my girlfriend can deal with my crap most of the time but she does).

I've decided that, since I've been made in to this role model by my readers, I'm going to start doing things worthy of your admiration.

First, With the help of my good friend and aspiring personal trainer, Becca, I've outlined a training schedule to run in my own NickWithMS 5K Run for my 27th Birthday this year on August 28th. This will be the first of a line of physical events in which I will participate to help spread awareness and raise money for Multiple Sclerosis. Becca and I will also be training to participate in St. Joeseph's College's leg of the Bike MS 100 Mile Bike Tour through Southern Maine in 2013. I will keep everyone updated with details on participating in an event in your area on behalf of Team NickWithMS.

Also, I've started a new rock band called Calamari Special with my good friends Jack, Kevin, and Zack. We will be writing, and performing original rock music and donating all proceeds to Multiple Sclerosis Support and Research. Keep an eye out in the future for details on that.

These are all brand new endeavours so I applogize for not having too many details on them as of yet. Keep an eye out on my Facebook Page - http://www.facebook.com/nickwithms, my Twitter - http://twitter.com/#!/nickwithms, and, obviously, here on my blog as this all develops further.

Thanks to everyone who has followed me and supported me. I'm so happy to hear that I've been able to return the favor to so many of you.

NickWithMS

My Plan to Stay in Shape

One thing I keep hearing from every MS Information Source is the importance of staying in shape both mentally and physically.

Before my most recent relapse on December 25, 2011, I was running 6 miles a day, 5 days a week on the elliptical machine at my gym. I felt great when I was doing it. I was able to keep that up for about 3 weeks before my relapse at which point all workouts stopped. Now I'm at the point of getting back in the routine again. I've decided I want to train to run road races. My first goal is to complete a 5K before my 27th birthday on August 28th. As anyone who is experienced in running knows, running on the road is NOTHING like running on an elliptical.

Luckily for me, I have a friend, Becca, who is a competitive runner and also aspires to be a personal trainer as a career. She has outlined a training plan which will help me with this goal. I'll update my progress occasionally in my blog and on my Facebook page.

Training starts Jun 26. Wish me luck :-)

Wanna get High?

Through my posts, I've regularly poked fun at people who seem overly interested in the advances in Medical Marijuana research. This is a tough topic to talk about because research has shown significant benefits and improvements from Marijuana use among MS patients. Anyone who has smoked Pot regularly has probably realized that it suppressed their immune system. With MS being an Autoimmune disease, this is clearly a benefit. However, anyone who has ever hung out at a Dave Matthews concert also knows that repeated use of Marijuana has debilitating congative effects. Honestly, I'd rather fight my MS another way than start accusing everyone I see driving a BMW of being part of the "Corporate Machine who fights to keep the little guy down." Don't get me wrong, Jam Bands have their place; I just really don't want to get to the point where I think a 20 minute Vacuum Cleaner solo qualifies as a Revolutionary Advance in Music Theory and Performance.

My whole life, I have been cautious about taking perscription medications. Even when I had my wisom teeth out, I took a couple OTC Advil rather than the Vicodin my Dentist prescribed me. I grew up knowing that I was never the most physically attractive guy in the world. The only thing I always knew I could rely on to get friends (especially girls) was my wit and humor. When I'm on drugs, I'm not even able to tell a joke correctly. I am prescribed a few different drugs to take As Needed to help fight symptoms such as Fatigue and Panic Attacks - both of which are pretty regular symptoms of MS.

I've been told by many people that I qualify for Medical Marijuana in the State of Maine due to my diagnosis. I'm not doing this for quite a few reasons. First, I'm not in high school. I don't like being high. My brain is already being destroyed by my immune system. I don't need to surpress it more with THC. If I started smoking pot daily, you would probably find that my blog becomes a lot less.... umm.... whats the word..... you know..... good.

See what I mean?

The other reason is - I don't wanna be known as "The Guy Who Always Has Weed." The last thing I need is someone finding out that I've got Marijuana in my house and breaking in to get some while I'm at work and my girlfriend is alseep. I already have people wanting to get my other prescriptions from me. As easy as it would be to grab some extra cash on the side, again, I don't want to be known as "The Guy Who Has It."

If there is anyone reading this who has MS and is currently using Marijuana for treatment, please let me know your experiences with it. For right now, I don't think it's for me.

Follow me on Facebook!
@NickWithMS on Twitter!

My Immune System is so strong it's killin' me

In my last post, I breifly explained how Multiple Sclerosis works.

"It doesn't really get dangerous until your immune system becomes completely incompetent and just attacks everything near it..."

The down side of this, of course, is that it attacks things that I may need some day such as my Brain. However, the plus side of having a juiced up Immune System is that a almost never get a cold or The Flu. All my coworkers start calling out one-by-one as viruses mutate and attack their bodies one at a time. I am always worried that I'm gonna be next but, as luck would have it, I never am. Maybe H.G. Wells should have considered Multiple Sclerosis before sending his biomachines to a planet full of sickness and disease. Sure, they may lose control of their laser hand for a few moments and a few of the older ones may end up pooping their pants, but at least their entire infantry wouldn't be defeated by The Common Cold.

I also have the advantage of never being sleep deprived. Even when I was younger - many moons before my diagnosis - when ever I felt like I may be getting a sore throat or a sniffle, I would end up going to sleep early and getting in a good 11 - 12 hours before going to school. At my current job, I never usually need to be at work before 10:30am which allows me to make sure I sleep as much as my body tells me I need to. Again, this often leads to 11 hour comas and having everyone around me call me a lazy slob but I'll take it if it allows me to laugh at them when they are at home, tethered to a box of Kleenex and Dayquil.

I try never to let stress take me down. In my line of work - Renting Cars to Tourists at the Airport - I don't encounter much job-related stress and, when I do, it never lasts longer than 10 minutes before the situation - a.k.a. customer - goes away forever. In my personal life, as I mentioned in an earlier post, my girlfriend, friends, and family are the best I could ask for. There is no petty drama in my personal life. I am very lucky to have found the friends that I have and made the decision that Length of Friendship does not equate to Quality of Friendship and pushed away long time aqaintences who were adding stress without any real benefit. My circle of friends has been significantly reduced over the past few years but my quality of life has improved exponentially.

Whether you have a disease or not, making a regular inventory of your stresses and sending away as much of them as you can is always a much healthier way to live. I will follow that up with my usual disclaimer - I'm not a doctor.

My mother recently realized that a long time friend of hers was causing more harm than good to her life and finally, after 30 years of friendship, decided it was time to cut her ties. This was an incredibly hard decision for her. Sometimes, even though we have a long list of reasons to break ties with a person and have convinced ourselves time after time that we will feel so much better after we do it, we still can't bring ourselves to make that move. Anyone who has ever been in a failing relationship for far too long knows exactly what I am talking about. Months down the line, though, we wonder why we didn't make the decision sooner.

Stress is a powerful thing. Get rid of it. Sorry if this blog wasn't as funny as my usual ones but I felt it needed to be said.

Nick

A non-medical explanation of MS

So this blog is becoming more popular than I had originally thought! Thanks everyone!

I'd like to start by asking all my readers to follow me on Facebook and/or Twitter.
http://www.facebook.com/NickWithMS
@NickWithMS

I'm pretty open with people about my disease (hence the blog) but I find when I tell new people that I have MS, they look at me with the same look of terror that I saw on the faces of those newly diagnosed patients when they told their stories of their initial diagnosis. Now, this could mean a number of things. Logically, since most people seem to react in a similar way when hearing news about MS - whether they're finding out that they have it or learning that their friend does - one would come to the conclusion that I am the outlier and simply under-reacting to the situation. The other conclusion - the one that I draw - is that people just don't know what Multiple Sclerosis is. Most people know the words. Most people know that it is a disease. Most people know that it is incurable. I could see why, only being prepped with this basic information, a person's immediate reaction would resemble that of the famous Edvard Munch painting. 

I'll try my best to end this silliness right now by explaining basically what MS is. Keep in mind: I'm not a doctor. 

Lets start with the basics -
Sclerosis - In the medical field it's definition can vary slightly. According to wiki (the most trusted news source in the Universe) the broadest definition is: the stiffening of a structure, usually caused by a replacement of the normal organ-specific tissue with connective tissue.

In my case, it refers to plaques and scar tissue found on or around nerves due to inflammation and immune response... Think of it this way: when you cut your hand, a scar forms. Same thing is happening in my brain, only I can't prevent it with a pair of Kevlar gloves.

Multiple - see 'multiple' Seriously. I'm not going to define this word for you. If you need a definition, you aren't my target demographic and you should feel free to stop reading my blog.

Now that we have the definitions sorted out, the question would be "so why does this happen?" Well, I'm glad you asked. Neurons are made up of a couple different parts. I'm not going to describe them in detail. Instead, I will show you this cool little cartoon.

 The important parts of this photo are the Axon and the Myelin Sheath. Basically, neurons are like extension cords. You've got your Axons which are like the actual electrical cables that conduct the electricity and you've got Myelin Sheaths which are like the rubber insulation which keep you from getting electrocuted every time you turn on the light switch. Normally these guys just hang out and conduct the amazing electrical light show which is constantly taking place in your brain like a perpetual Trans Siberian Orchestra concert (or, for those of you who are interested in advances in Medical Marijuana Research, a Pink Floyd concert).

Also in one's brain are immune cells. They like to hang out to make sure pesky invaders like Meningitis don't just randomly show up to crash the party. They're the same immune cells that travel all over your body to attack flu viruses and other types of sicknesses. Sometimes, the immune cells get confused and start waging war on things that aren't actually dangerous. Anyone who gets the sniffles in the spring time due to pollen allergies is already familiar with this phenomenon.

 "Wait? What is that? A harmless piece of flower sperm making it's way in to my nostril? THIS MEANS WAR!" 

So your body wages war on something that it shouldn't and you have to suffer the consequences. You end up feeling like you're sick because your body actually thinks you are.

Usually, this confusion - though annoying - is completely harmless. You deal with a runny nose and your 'Alexander the Great' Immune System feels like it has conquered something substantial. It doesn't really get dangerous until your immune system becomes completely incompetent and just attacks everything near it - including your own body. This is what is referred to as an Auto Immune Disease. That is just how it sounds. Your body is trying to become immune to itself by, well, attacking itself.

In the case of Multiple Sclerosis, the enemy is the nervous system. My immune system sees the Myelin coating on my neurons as a danger to society and decides to attack it.

Once the Myelin is gone, those Axons short out against each other and my brain has no clue where information is coming from. It would be like wiring your house with bare copper wiring. Light switches, if they were even able to work, would be turning on and off all different lights because there would be no protective coating to direct the flow of electrons.

Luckily, with intense steroids, medicine is able to stop the immune response long enough for the Neurons to grow a nice layer of scar tissue to help protect themselves. Once the immune system destroys the Myelin, it begins to attack the Neuron. Anyone who has hear the story of Dr. Frankenstein knows that once a nerve is severed, it can not be restored. The idea is to stop the immune response before it gets that far. 

My current method of treatment, Copaxone, works by shutting down the pathways which allow my immune system to co-mingle with my nervous system. This keeps my body from attacking itself, but it could, hypothetically, allow things like Meningitis to slip in unannounced and undetected, though I haven't found any documented cases of this.

I hope that helps answer any questions you may have about the disease. Remember, I am not a Doctor. Not even a little bit. So if you have any further questions or concerns, please contact a Doctor.

Dr. Phil doesn't count.

Support

My Friends and Family are my biggest support
because they aren't afraid to make fun of me.

When I attended the support groups and free dinners provided by the pharmaceutical companies, I learned two major things: First - drug companies definitely have a shit ton of expendable income. Every dinner was catered with stuffed chicken breasts, pasta buffets, fillet mignons, and a wide assortment of delicious truffles and parfaits. It made me hope that Multiple Sclerosis and Diabetes are mutually exclusive. I suppose, as long as my insurance company is fronting about $1,000 per month for these drugs, Pfizer at least owes me a chocolate covered cherry and a steak, right?

The second thing I learned, apart from finding out which patients were closely interested in the advances in Medical Marijuana Research (though, their Grateful Dead T-shirts would usually identify them the moment I walked through the door), was how scared and alone people can feel when dealing with this disease. The problem with diseases like MS is that, often times, the symptoms have no visible side effects to a third party. My most common little episodes usually include partial blindness, numbness, and balance/coordination issues. None of these symptoms can be easily seen by an onlooker so they can be easily dismissed as melodrama by employers, friends, and the single mom making my tall skim vanilla chai latte as she rolls her eyes at me because I'm having difficulty picking the quarter she carelessly slung at me up off the counter on account of having no feeling in my left thumb.

Luckily for me, my closest entourage understands this disease as well as anyone who isn't currently going through it can. When I encounter a difficult situation, my best defense mechanism is comedy. I treat this disease like a joke and those around me do as well. While this method may not work for everyone, it allows me to talk easily with my peers about what is happening without making anyone feel overly uncomfortable and, thus, causing my number one fear to become a reality - an awkward silence.

I made reference in my last post to my reaction when I first received my diagnosis.

"Getting diagnosed was one of the most difficult things I have ever gone through. Now, I don't mean that receiving the news was emotionally devastating and made me want to curl up in to a dark corner and cry by myself for the weekend. No - I actually mean the process was more difficult than a job application for Google."

The truth is, some people actually did want to curl up in to a dark corner and cry by themselves for the weekend. During the first year of my diagnosis, it was suggested that I attend support groups specifically targeted toward newly diagnosed patients. Again, I found myself the youngest person in the room and felt like, though we all shared one thing in common, no one's story was anything like mine. People talked about receiving the news from their doctor as though it was a death sentence. They described in detail the horror they felt as their Neurologist explained that they have an incurable disease and that modern medicine still doesn't fully understand it.

I'm not sure why,  but not a single one of those thoughts went through my head when I got my diagnosis. The only real information I took away from that meeting was:

• Finally someone can tell me what the hell is wrong with me.
• Good. This disease isn't contagious 
• While there is currently no cure, there are effective treatments
• Multiple Sclerosis doesn't kill you

I don't think of my self as an overly optimistic person; as you can probably tell by now, I'm actually quite cynical. When I sat there and listened to these people dredge on and on about how they felt like their life was over, I realized they were going to be of absolutely no benefit to me. Where were all the people who wrote their bikes 45 miles to prove that they still had mobility? Where were the people I saw on TV pulling the Boeing 747 with their bare hands because MS didn't take their lives away? These were the people I connected with. I wasn't a victim, I was simply afflicted by an unfortunate turn of events. At least it wasn't AIDs or Cancer. At least I didn't have to worry about infecting my friends. How could people be so upset about this news. On the long list of incurable diseases, Multiple Sclerosis is the one I would pick every time.

My biggest form of support comes from my wonderful girlfriend, Cassandra. She has come to understand the effects of my disease better than anyone else I know. She has come with me to neurology meetings, MRIs, free vacations in the white mountains sponsored by the MS Society, and free dinners put on by the drug companies. She's such a trooper. She understands that, some day, this disease will probably get the best of me and has stuck by my side regardless. It is such a comfort to know that I have someone to experience this all with who actually understands it. She doesn't break down in tears and fear the worst every time I get a tingle in my hands; she usually says something like "well, that's what you get for dancing like an idiot for 30 minutes without drinking water." She understands that there is a fine line between taking something seriously and making a joke of it. She gets it. She is my biggest support because she knows how to make fun of me.