Monday, September 27, 2010

100,000 Steps Raised $ towards an MS free world

What stamina! 

MS Challenge Walkers hit the pavement and walked 50 miles this past weekend, from Carlsbad to downtown San Diego. Bravo! Walkers persevered despite the hot, hot temperatures (yesterday it jumped up to 90 degrees). Whew!  It was worth it because nearly $1m was raised!

This video clip highlights Walkers and Teams approaching the finish line.   Woot, woot!    

Wednesday, September 22, 2010

This is a seriously big deal!! FDA approves first oral drug for MSers!

Monday, September 20, 2010


Niggle.  This is a GREAT word.  First because niggle rhymes with wiggle and wiggle always makes me giggle. Second because it seems so very British and I think the Brits have a great way with words. I haven’t heard many Americans use this word, have you?  Besides, niggle keeps coming up in my spell check suggesting that I try sniggle instead.  To sniggle is to fish for eels by thrusting a baited hook into their lurking places.  Gross. Let’s move on.  One more and final reason why niggle is a GREAT word is because it is a really good way to describe what many MSers go through on a daily basis.  Well, at least what I am putting myself through every day.  Let me explain. 

According to my sources, the definition of niggle is:  worry unnecessarily or excessively.  To niggle is to be preoccupied with details.  To niggle is to worry, to fret, to fuss. Admittedly, I niggle every day about every little feeling in my body. The burning in my legs, the numbing in my fingers and the blue spots I see with my left eye are all things I niggle about. I find that as I become more aware of my body and its sensations I tend to worry more.  I fret more.  Allow me to share a few highlights of my daily niggling.

“My legs are burning up.  Is this my normal?”  I niggle. “Or, is this another obnoxious relapse?”  I niggle some more.  “Nope, these symptoms are the same that I’ve had for the last few months.  Silly.  It’s just a little warmer outside so the burning is stronger.  After all, it is 100 degrees out there!”  I niggle next about the tingling in my right hand.  “All I did was water the plants this afternoon!  Why does my hand feel so dead?  Am I having a disabling relapse?”  I niggle.  “Your hand has felt like this for the last year”, I remind myself, “It’s just flaring up a wee bit”.  “But what if it never gets better?”  Good grief.  All this niggling!  I always revert back to my greatest source of niggling, my left eye. I announce to my partner, my kitties, my neighbors, whoever is listening, “just to let you know, I am seeing blue lights and my left eye is NOT right today”.  I niggle.  Again with the routine of covering my right eye with my hand and observing what I see with my gimp left eye.  I switch, covering my left eye and observing what I see with my right eye.  I compare notes and I niggle. “Oh brother, I am not seeing things clearly and was that a sharp shooting pain I just felt?  Do I need to call the neuro doc?”  I remind myself that I’ve been through this before and the neuro doc has assured me that my retina will re-adjust.  And so it goes.  Niggle. Repeat. Every. Day. 

Yes, the word niggle is perfect for us MSers but seriously cannot be good for an MSer like me to go through every day.  I am an official MS niggler and ‘tis no good. Aren’t I supposed to eliminate stressors?  

I really should take a break to meditate. 


Friday, September 17, 2010

Be Thankful for Your Jewels

I just read an interview between author Toni Berhnard and doctor-blogger Elisha Goldstein, PH.D and was introduced to this great ancient poem. Inspired by Ms. Berhnard, I printed this poem too and now keep it in my MS journal as a reminder to be thankful for the jewels in my life despite my MS.

One, seven, three, five –

Nothing to rely on in this or any world;

Nighttime falls and the water is flooded with moonlight.

Here in the Dragon’s jaws:

Many exquisite jewels.

—Setcho Juken

This interview is available online through this link:  How to Be Sick: An Interview with Toni Bernhard, courtesy of "Mindfulness & Psychotherapy".  


Tuesday, September 14, 2010

Exacerbations, who needs them!

I often have trouble speaking some words, tongue tying and butchering all kinds of beautiful words. My attempts at saying things correctly have turned into a major source of amusement for my supporters (aka my dear friends and family) and me as I get coached into speaking things correctly.  Ha, ha.  Allow me to share with you one of those silly moments through this audio snippet.  This was recorded during a family car ride as I attempted "exacerbations".  

  Exacerbation by cgermans

One of the best sources of amusements for me is the ability to laugh at myself!  


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