Thursday, June 7, 2012

Carnival of MS Bloggers #116

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Optimism, Breathing in Sync, and Steroids

from Lisa Emrich of Brass and Ivory

Did you hear of the Everyday Matters program co-sponsored by the National MS Society and Sanofi-Genzyme (developers of Teriflunomide and Alemtuzumab)?  If not, please read this post in its entirety at HealthCentral.

Five individuals living with MS will be chosen to work with the Everyday Matters team to map out strategies for achieving a desired goal or addressing a specific challenge in their everyday life through positive psychology.  The lucky five with work with Shawn Achor, renowned psychology expert and former Harvard University lecturer, Kristen Adams, a mom and Emmy‐award winning producer living with MS, and Michelle Clos, a life coach certified by the International Coach Federation who is also living with MS.

I had the pleasure of speaking with Kristen Adams earlier this week about the program, about positive thinking, and about living with MS.  As a professional producer, Kristen’s expertise is in video and telling stories.  She will be conducting the initial interviews of the five participants living with MS to introduce them to the MS community online.  She will keep in touch with them over the course of the program and visit them near the end to document how each has achieved a desired goal or worked through a particular challenge. 

After attending a weekend workshop with Shawn, Kristen, and Michelle in Denver, Colorado from July 13-15, 2012, the five participants will receive six months of personal coaching from Michelle. The participants will also be keeping a video diary throughout the program to share their experience.  In November, the entire group will be brought together again.

Kristen shares that the most important part of the project is for people in the MS community to VOTE on the topics.  What issues are most important to you?  What challenges would you like to see tackled through the program?  The five participants will be chosen, in part, by how their own challenge or goal represent the interests of the MS community. 

During our interview, Kristen was very excited as she described how several of the ideas Shawn teaches are reminiscent of homespun wisdom - “If you don’t like your situation, change your attitude.”  You have the power to shape your circumstances.  “My circumstances necessarily aren’t changing but my attitude about my circumstances can,” says Kristen.  “I have the power to change my attitude about my situation.”  Changing your outlook can help you feel differently about unchanging circumstances.  

Shawn and the “Tetris Effect.”

Although Kristen admits to not playing Tetris as a youngster, she shared one of Shawn’s analogies with me.  I really liked it so I’m sharing it with you.

The game Tetris teaches you to scan for patterns.  The better you get at seeing the patterns, the better you get at playing the game.  Kristen shares that it has been discovered that “people who played a lot of Tetris, even when they walked away from the game, would start to see those patterns in life all around them.  So [Shawn] says, you can teach your brain how to scan for the positive in life.” 

Here’s a really simple exercise to try.  At the same time each day, think about three positive things that happened that day.  Kristen does this with her sons at the dinner table.  This “trains your brain to scan your environment for positive things,” Kristen says.  This is one way to rewire your brain for optimism.

If you are interested in participating in the Everyday Matters program, sponsored by Genzyme and the National MS Society, go to to learn more.  HURRY!  The deadline is next Wednesday, June 13, 2012.

by stephen of one life: livin' the dream

i took a tai chi class many years ago, in which the teacher admonished us to remember to keep breathing, or, to be more exact, to remember not to stop breathing. when i was in high school, during my very brief stint in track, i figured out that the best way to pace myself was to coordinate my in-and-out breaths to my foot falls. i found i was able to run further if i could maintain this rhythm. years later, when i used to walk a few miles during my lunch break every day, i used the same technique, matching my breathing to my foot steps. it was a meditative process, even overlaying a mantra over my breathing.

i have in recent years had to give up both running and walking, but i have long been an on again, off again meditator, and the same mantra rhythm has stayed with me. i spent some time with a physical therapist who reminded me not to hold my breath when working with hand weights or doing other strenuous exercises. seems like pretty common sense advice, but i was, as probably many of us do, holding my breath as i strained. so much easier when the proper breathing is maintained.

oddly enough, i just recently discovered that, as i dragged myself down the hall with my walker, i was, again, holding my breath, and, how much easier it was when i timed my “steps” with my breathing. also made me feel less likely to fall. amazing how the simplest things can make such a huge difference.

by Annette of How Did That Happen?

So after spending almost 3 weeks on solumedrol to fix my optic neuritis, I started a 3 month round because my leg went on strike - for 3 months.

Different people have different things to say about their steroid experience and I would love it if I could report a 3 month stint of boundless energy - happily scrubbing the kitchen floor while whipping up some creme brulee at 3 in the morning.  Sadly, I have never fallen into that bucket.  A list may be a more efficient vessel for my steroidal experience.
  • Metal Mouth - as soon as the IV steroids make their way into my impossibly small veins, my mouth fills with the taste of metal.  It feels like I’m sucking on used tractor parts.  The only cure - peppermint altoids and Coke - together.  Well there is another cure - eating anything with a taste stronger than that of a tractor.  I went with the peppermint altoids and Coke during the infusions, but when I left, I stopped at every drive-thru between the doctor’s office and my house.  I bought and ate everything that wasn’t tied down or secured really well.  There were times I could have happily chewed off my own arm if there was no fried chicken or Lays potato chips within my reach.  (I’m a vegetarian, btw.)
  • Weight gain - obviously due to the fried chicken, chips and pounds of key lime cheesecake I ate daily during those months, I gained 60 pounds.  This was the toughest part for me.  I had always been around 100 lbs and the 10 baby pounds I had gained were driving me crazy.  After the 3 months were up I tipped the scales at 170.  The fact that Rochester didn’t have an Olympic heavy-weight wrestling team was inconsequential.  I was headed for the big time.  Don’t get me wrong - 170 is perfect for some people - I get that.  My ridiculous standards are meant only for me.  The doctor’s advice?.. Steroid weight can be a bear to come off.  Super - thanks for that. So I spent the next 6 months eating gummy bears, crying to the Cosmos.. HDTH???  (Could it be that the answers to my HDTH questions are smacking me square in the face, but my delusional God complex, ‘perfect every day in every way’, and ‘off the charts D-personality’ are all plotting to conceal the answers that probably would have accelerated this drawn out process significantly?  Another redundant question.  Of course not.)
  • Potty Mouth - This was really something.  I’m proud to be a Canadian with unflinching standards in the Emily Post manners department.  I understand that can be as annoying as dropping f-bombs to some people, but again - only my standards matter in this world - am I right?  (That was a redundant question.  Please do not answer it.  Thank you.)  The vile eruptions that poured out of my mouth while on steroids would shock a back-woods hooker on crack.  And no one was spared.  Michael got the brunt of it, but anyone that mistakenly wandered across my path got blasted.  My mother-in-law finally lost it one day and said, “Watch your God-damned mouth - you sound like a trucker”.  I’m surprised she survived my ensuing wrath.  I remember a drive-thru experience one day when I checked my order while still at the window.  There were only 3 10-packs of chicken nuggets.  I had ordered 4.  I began swearing at the skinny, acne faced boy behind the window, but he ran away.  The GAUL!  I actually parked the car and walked into Wendy’s so I could berate more people more effectively.  This was, of course, after I ate the 30 chicken nuggets.  The manager ended up giving me 3 free 10-packs as long as I left the building immediately.  Score.

This concludes the 116th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 21, 2012. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 19, 2012.

Thank you.

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