Thursday, January 24, 2013

2013 has gotten of to a wonderful start.
A lot has happened so far this year and I haven't gotten a chance to inform everyone. 


First: My Disease

My MS has been back in remission for a full year. It flared up on me last Christmas and hasn't reared it ugly head since. I have been taking Copaxone pretty regularly over the past year and have felt great.

As anyone who currently deals with MS knows, being in remission doesn't mean everything is A.O.K. I've spent the past week with diminished feeling in my hands. This happens to me for a few days every month. It's no big deal. It affects my dexterity which, thus, affects things like typing, playing piano, playing guitar, eating sushi with chopsticks... #FirstWorldProblems.

Winter time seems to be good for me as long as I remember Life Rule #5: Hydrate. Drinking enough water is important. I have cut almost all other beverages out of my diet completely and try to drink 3qt to 1gal of water a day. This sounds like a lot but when the dew point is -9 degrees, (that wasn't a typo. the dew point today is 9 degrees below 0.) the air takes most of the water back out with every breath I take.

 All-in-all, everything is going well with my MS.


Second: My Goals

In October, I set goals for myself to be completed by Jan 1, 2013.
- 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.

Goal #1
I can not run 5 miles in under 50 minutes. In fact, I have only been to the gym twice since Thanksgiving. I feel so lazy. I ran my NickWithMS 5K in September and basically stopped running after that. I went back to the gym 2 weeks ago and attempted to run 1 mile. I felt like I was going to die. I keep telling myself that I'm going to go back tomorrow. Every day, I say "tomorrow will be the day I go back." The nice thing about "tomorrow" is that there is always another one to fall back on. I will go back. I promise I will go back... Maybe this weekend.

Goal #2
My father got me the Canon Rebel T3i for Christmas. It is absolutely wonderful. Not only are the rebel series cameras great for any semi-professional photographer, they are also fantastic for amateur film makers. Keep an eye out for productions I'm working on via my film channel:

[evlasproductions]

I am also using the T3i to post video blogs on my NickWithMS Channel

[NickWithMS]

As far as the production of my YouTube series, it is written and mostly cast. 

Production is becoming more of a pain in the ass than I had originally anticipated. I have a new respect for people who produce movies. I suppose it is a little bit different when your cast is there as their job and not donating their time to do you a favor...

Goal #3
The Calamari Special album is still being produced. The epically talented +Jack Fossett  has been lending his guitar talents to the album and my friend Ross will be coming to lay down some sweet drum grooves to spice it all up. As songs are completed, I will post them on my [@Twitter] and my [Facebook] so keep an ear out!


My Life

As many of you know, this past July, the lovely CassyWithoutMS accepted my proposal and agreed to marry me. Originally, we had planned on getting married in the summer of 2014 in order to give us enough time to save up the cash needed to plan such an event. As we explored our options and started adding things up, we realized that things were going to be less expensive than we once thought. Armed with this brand new information, we have decided that we are going to dive right in and get married on July 13, 2013. How lucky is that?

Also, as I posted on my twitter today, I had a conversation with my boss about life. He stumbled upon some of my YouTube videos and started asking me questions and, of course, we started talking about my MS. He admitted that he knows nothing about the disease so I explained how it all works and how it affects me personally. I also explained how, for many people living with MS, it is an invisible disease. I could be having a flare up and, to an outside observer, be showing no symptoms of being sick. Also, with the unpredictability involved with a disease like MS, I could be totally fine one day and incapacitated the next. He listened intently as I explained everything I could think to tell him about my life and my disease and ended by saying "If there is ever anything you need, don't be afraid to let me know." He was quite supportive and understanding of how the conditions change at a moment's notice and reassured me that he would never use my condition against me.

After making mention of this conversation on twitter, I was surprised by the explosion of responses I received by people saying that they had a completely different reaction from their employer when sharing news of their disease. Some of them asked if I worked for a small, private company where things are more flexible. I work for a multinational corporation which grosses over $16BIL a year. By no means a small company. In fact, I'm willing to bet that every single reader of my blog has not only heard of the company by whom I am employed, but you have probably used one of our products or services at least once in your life.

I won't mention their name unless they're willing to pay me for advertising ;-)

So, that's about it.
Happy 2013
Keep an eye out for my Video Blogs on my NickWithMS Youtube account and, as always, follow me!

youtube.com/nickwithms
@nickwithms
facebook.com/nickwithms

Nick

No comments:

Post a Comment