good find: Motivation: Grit

Catch this episode of Spark on motivation. I found inspiration in the idea that grit can be learned. (in the full, uncut version)

Outside The Arc

I see characters emerging from the landscape. A pair of stories, opposites in many ways, but with many shared perspectives. Two women: One, pre-liberation, fiesty and committed to fighting for what is right. The other, liberated, wanting the Perfect Days she caught a glimpse of but having to respect a slower pace of healing. What happens outside the lines painted in the "miracle" videos in the now familiar CCSVI story arc? The "miracle" videos set the expectations high. What happens if we don't see the same dramatic, seemingly instant improvements? What happens when all our friends, family and neighbours hear we had the liberation treatment and expect us to have the same turnaround, on demand? The truth behind the "improved quality of life" statement becomes clear. We still have MS even if some things improve, some of the time. We still need to respect that every moment is not going to be a camera-ready, shining moment but that we will always strive to bring the best that we can to every moment -- hope for the best but forgive ourselves if perfect isn't here yet. It is a lesson in accepting the now. Yes, blocked veins should be cleared. Some see fantastic improvements. Improved quality of life is still worth fighting for. I wonder how any "scientific" body can even pretend to make declarations one way or another on such a roller coaster disease. Why does it feel wrong to point out that the "miracles" aren't the rule? Even "improved quality of life" is more than most drugs can offer. MS seems to have many shades. There are many different reasons we may need some help. Balance, weakness, fatigue to name a few. Perhaps there is a belief that this theory and treatment is only worth chasing if we can guarantee the "miracle." Those kind of expectations seem hard to sustain. Every case is different. Every person is different. Life rarely follows script. Life can still be beautiful if it colours outside the lines.

What If...

Meet Anne. She is a spirited woman with MS, who just got her test results back and found evidence of CCSVI but is faced with a healthcare system that won't correct a vein abnormality until there is enough scientific research that doing so will improve her autoimmune disease. Here is the game of What If she plays trying to make sense of the predicament.

"What if Diabetics were told by their endocrinologists they could not have their knee replaced until extensive double blinded studies were done of the impact of the surgery on their diabetes.

What if people with Arthritis were told by their specialists they could not have their kidney stones treated until extensive double blinded studies were done of the impact of kidney stones (and their treatment) on their Arthritis.

Lots of ways you can play this game!! It can get quite ridiculous…


I had my Vascular problem confirmed yesterday. It will not be treated because I have MS.
Whether CCSVI has a relationship to MS is irrelevant. If my vascular problem was identified in a person who did NOT have MS, it would be treated."

What do you think?

good find: Finally!

Good news close to home.

Spark

Sometimes I see a shower of mini lightning bolts. Imagine someone threw a bag of cosmic tinsel in the air and tiny bits of silver float down like silver feathers. Other people can be quick to jump to the pitying mode, the "MS Sufferer" mentality - and don't get me wrong sometimes I wear that hat too -- there are definitely challenges -- but Diane and I were chatting and she brought up a good point. The "Suffering" part can be a choice. There are challenges for us all. Of course, life without MS would be nice. You can substitute the initials MS for almost anything --stress, debt, cancer, depression, you name it. Rising to the good fight means striving for grace even when life serves you with a bowl of pits instead of cherries. It is a moving target but sometimes we can see art, even in "disability."

Kryptonite

Diane has returned from India. She was liberated again and this time "got a beautiful stent implanted snugly" in her left internal jugular vein. The 3 Perfect Days have not yet made an encore performance. The jet lag, heat and humidity may be the culprits. Some of us with MS know that the heat and humidity can up the ante on our symptoms. Fatigue and weakness can strike. For me, it is almost like the fog unfolding in a shower. My vision gets cloudy. When I first experienced this "cinematic event," I was in a running class at the gym and one by one my fellow classmates started to lose their heads in clouds of fog. Funny in a way, but scary. Thankfully, as I cooled down, a more typical scene re-appeared but that symptom is a moving target for me. No symptom is immune but they all seem to dance and want their turn in the spotlight. It is almost as though a chef is yelling out recipes at a square dance. "Let's take a hit of fatigue, with some vision fog...and then finishing with the grand finale -- a weak bladder!" "Ok now, let's start with muscle weakness..." Maybe it is not the same for others but my challenge is to remain calm during this parade.

A Lesson in Patience

The dog days of summer are meant for popsicles and flip flops. I just read about yet another MS-er who is heading abroad for the Liberation treatment. I am on a few lists like every other person with MS who hasn't already been treated but I am sticking to North America and refuse to pay insane amounts of money for this treatment. I am almost on the waiting list to be scanned by ultra sound by Dr. Sandy MacDonald's team in Barrie. Almost on a waiting list because I sent a request from my doctor at the beginning of May and they have only started scheduling the requests received since the end of April. At this rate it may be awhile to even see if I am a candidate for treatment. I can understand why folks take the fast lane. Every time there is media coverage of another successful Liberation, it just fuels the fire. Fighting the good fight for me means remaining calm and happy despite the heat and purgatory of lists.