MS Foundation E-Magazine – Awesome!

The MS Foundation in Fort Lauderdale, Florida, has a great online magazine called MS Focus. They publish a new magazine four times a year, and all the magazines are accessible from the same page!

YOU CAN READ THEM HERE

I especially love the first article about small changes leading to big improvement. It’s in the Winter 2013 Issue. I love the idea of baby steps, because they’re small, non-threatening steps you can actually take right now, and baby steps in sequence can still lead to something huge.

REMEMBER: You don’t have to figure out everything right now. You only need to know what you want to do NEXT!

So what’s your next baby step?

Advertisements

MS Adventures – Set Totally Unexpected Goals!

Okay. I have a confession to make.

I have to admit that, even though I don’t have television (gasp!) I do occasionally go on Youtube and watch clips from the talent reality shows, like America’s Got Talent or Britain’s Got Talent or American Idol. I love them because sometimes, something totally unexpected and amazing can happen, completely out of the blue. This was one of those clips for me, and it’s NOT a normal “motivational moment” clip. I’ll explain after the video!

********

********

So this girl comes out, dressed in pink latex to get attention, but not for the reason anyone else thinks. Her goal is NOT to get to Vegas or participate in any more reality shows, but to do something very specific: to meet Howard Stern. The REASON she is my hero is that she set a COMPLETELY DIFFERENT goal than anyone expected, AND SHE DID IT! She just dressed up in something crazy and came up with enough of a “talent” to get an audition, because she knew that’s all she needed. She IGNORED the people who said she wasn’t good enough, because they were assuming the obvious, without finding out what her real goal was. And she was 100% successful in her real goal. I may question her general sanity and taste in men, but she did what she needed to get what she wanted, without hurting or demeaning herself or anyone else. And I think THAT’S awesome!

PS Yes, I know some people may accuse her of demeaning herself by pouring herself into that pink latex dress, but I see it as a costume for the character she portrayed to get on the show. I don’t think she took anything about that audition seriously other than meeting Howard Stern. Plus, kudos to her for having the ladyballs to wear latex in public while weighing more than 98 pounds!

MS Adventures – How Do You Pace Yourself If You Don’t Know Your Limits?

Today I’m having one of those days. The ones where you wake up cranky and sore and you don’t want to be nice to anyone. I kinda feel like I’ve been hit all over the head with a frying pan – puffy in some places and flat in others. I just tried to be “normal” yesterday! Why do I feel like this today???

I volunteered to be on a friends’ team for a competition called “Winterfest.” It’s put on by the town, and has different types of competitions that all need to be completed as a team. Friday night was fun, there was a karaoke air-band “Mystery Event,” a “run and grab the paper bag and do what the note on it says” relay, and another I don’t remember. I felt fine when I got home afterwards, so I was hopeful for Saturday.

Saturday was a LOT more physical – we had to build a “Truely Canadian” ice sculpture, (actually, carve it out of a large hill of hard-packed snow,) start a fire from a log we had to cut and split ourselves, (I didn’t do that one – too many pointy objects!) a “do the stuff on the list and take pictures” scavenger hunt, and a crock-pot competition that I helped with by eating the results.

Winterfest 2013 Snow Sculpture - Front

Winterfest 2013 Snow Sculpture – Front. Yes, it’s a beer can with a tab on top. It’s Truely Canadian! You can’t tell, but it’s a 4 foot tall can poking out of a 4 foot tall maple leaf shaped ice bucket. With Moose. Mooses? Meese?

Winterfest 2013 Snow Sculpture - side

Winterfest 2013 Snow Sculpture – side. We wrote our names in yellow snow. Because if you’ve grown up in a small Northern Canadian town, you’ve tried it for real.

Other than the ice sculpture, I really didn’t do much, but with the -20 degree Celsius weather, even the sculpture was too much! I kept thinking “No one who isn’t dealing with this can possibly understand how much effort it takes to pretend to be normal.” I was feeling a bit sorry for myself, when I realized that EVERYONE on the team was dealing with something! Heck, we lost 3 out of 9 people overnight due to illness, and another friend had to leave at lunch on Saturday because his Krohn’s Disease was acting up. I tell you, we’d have WON that competition if we could have added points for every diagnosed condition our various team members were dealing with!

As it was, we didn’t exactly win. We actually got the “If You’re Not First, You’re Last” Booby Prize. I personally considered it a win just for being there, and staying for the entire competition! I think I convinced the rest of the team to look at it that way, and we may even make ourselves a trophy anyway.

But that was then, and this is now, and it’s easy to be all cranky and irritable when everything is sore and you can’t figure out exactly when you should have stopped yesterday. I could get all dejected and say “If this is the price for “acting normal,” I don’t want to do it anymore!”

But then what? I’m not going to hole up in a cave and NOT spend time with my friends. I mean, we’re ALL dealing with repercussions of some sort today. Do I just stop trying? That’s not me. Even a Booby Prize outranks everyone else who didn’t compete! But my limits have changed, my “normal” has changed, and I’m still not sure what it’s changed to. How do I find my new limits if I don’t push at them? Unfortunately, so far every time I’ve pushed, I’ve pushed too far. I’ve never been good at restraint! I’m really struggling with an “all or nothing” mindset. I mean, I feel fine when I do NOTHING, but I get bored and feel guilty for doing nothing, and I have to do SOMETHING. So I do SOMETHING and overextend. I’m just not sure how to find smaller SOMETHINGS to practice on.

So, any thoughts or advice from anyone out there? Have you found your new line, your new boundaries, your new limits? Are you still pushing? What small “somethings” do you strive for? How do you pace yourself in your new world? I’d love to hear some ideas! Just click the “Comment” button below and share some of your hard-earned knowledge!

Happiness is Tut’s Notes From the Universe!

I can’t believe I forgot about these!

I know I said I’d post pictures about the house reno, and I will this weekend, but I just had to drop a note about this crazy amazing service. Mike Dooley, in his “Notes From the Universe” emails (which are very short, very inspirational, and you can pick how many you want to receive in your inbox) are personalized messages that The Universe sends to you whenever you want them. They’re all about loving where you are right now, and having hope for your goals and dreams and future.

So many of us with a medical condition we get to confront daily FORGET that the most important thing is to feel good about ourselves, no matter what our struggles are. We can’t heal if we spend every moment feeling horrible.

So here’s The Universe with a “pick-me-up” for you all!

CLICK HERE TO CHAT WITH THE UNIVERSE

Check out the site, subscribe to the Notes, and have a fabulous day!

PS Last blog I christened myself “Ms. Adventure” and today I noticed my first email was from “Tut’s Adventurers Club.” Coincidence? I think not!

Hobbies, Compromise, and MS

I LOVE to sing! I’ve always wanted to take voice lessons, but growing up in a small town meant that opportunity didn’t exist. So now that I live in a city, I’m taking advantage of some of the opportunities here!

I’ve been taking private classical voice lessons for almost two years now, which means I started as an adult after I was diagnosed. I’ve seen too many people say they’re too old or they can’t start something new because they’re sick, but if you don’t start now then when will you? All we have is now!

Anyway, my teacher is amazing and she lets me occasionally take a break from classical to get into pop or random karaoke, which is perfect for keeping me interested and engaged. So far I have 3 songs prepared at roughly performance level, and I’m learning another one right now called “Apres Un Reve” by Gabriel Faure, who I think is one of the most brilliant composers of all time. He’s not very well known, apparently because he wrote “art songs’ (single stand-alone compositions) rather than operas. Here’s an instrumental version of Apres Un Reve performed on violin by Joshua Bell:

 

I just want to point out that you don’t need to be exceedingly mobile to sing. MS doesn’t mean you can’t have hobbies, and it certainly doesn’t mean you should give up the things you love! It just means you’ll get really good at compromise. One of my compromises is that a lot of my voice training involves learning to sound like “healthy me” even when I’m fatigued or battling cold and flu-type symptoms, which I am half the time. I don’t need to sound better than anyone else, I just want to do justice to the songs that I’m singing. I want to be able to sing in a way people can hear the beauty of the song itself, the brilliance of the composition. And maybe one of these days I’ll post video of me singing, and you can let me know if I’ve succeeded!