thoughts after midnight

Who tells your story, after you leave the earth?

I think that there is a misconception that unless you are of substantial wealth or celebrity, your story will be told by your children. If you are of substantial wealth or celebrity, you may worry more about what your story will be, and not whether or not it will be told. But that's not what I'm talking about.

This comes to mind following the very recent passing of my aunt. She has passed, leaving behind her husband, and no children. And as far as I'm concerned, I will tell her story, as she, inspires me.

My after midnight thought is this:

Who will tell your story depends on what kind of life you lead. I believe that if you live your TRUE life...big and genuine...your story will remain alive. Be true to yourself. Enjoy. Experience. No opportunity wasted (thanks for that one, Phil Keoghan).

This should be the easiest thing that you ever do.

Emily

I might have to take this quiz again

I am a Nigella What Flower Are You?

"Many people think you are just a little bit odd, but you consider yourself just a little eccentric. You find new experiences exciting and fulfilling."

a few things to read

Last night it took me forever to fall asleep. On nights like that, I wonder which came first: the thoughts of what to blog, or the inability to sleep. Which begets which.

First on my list of things to share:

MS and Celebrities in the news

Montel Williams (former talk show host and living with MS) was on Oprah on March 17. I missed it, but I was able to read some of the transcript from the show. This is a summary of what I read: Montel's MS is pain. Excrutiating, knife stabbing pain...recently spread to his face. From his shins to his feet, 24 hours a day, 365 days a year.

That's the thing with MS...it is different for every one who lives with the disease. We can all share bits of pieces of similar experiences, feelings, and emotions...but the whole package experience is different.

Montel fears waking up one morning, and being unable to walk.

This, I think, is something common to many of us who live with MS. Statisically, it won't happen to even half of us, but the possibility, and therefore the fear, exists.

Montel has MS. It does not have him, and he will not give in to it.

And now on to another celebrity...

The 'Amazing Race's' Phil Keoghan is set to bike across the US (Santa Monica to New York City) to raise awareness and money for the National Multiple Sclerosis Society. Previously active in "Bike MS", Phil has a cousin with MS. His ride through particular cities will correspond with that cities Bike MS rally. It's a 3500 mile journey, averaging 100 miles per day.

Phil...thank-you.


Phil Rides Across America

And for those of you who aren't interested in the whole website, I have highlighted the "why" in the link below:

Phil's take on MS, taken from the above website

Well, that's all for now.

Emily

my tools

It's one of those days. No energy, no oomph, and I'm almost too tired to be frustrated about it. But Jason is home today, and that helps a bit.

It's days like this that I feel unconnected to the rest of the world. I barely have the energy to get off the couch. Luckily, hunger gets me out of bed. So when I feel like this, and Jason isn't home, I look for ways to connect. These days, illness or not, a lot of people look for connections, and use the internet to do so.

I am no different.

I can't imagine being in the space that I am in, and NOT having the internet. I'm not going to go in to all the ways to connect, and list all of the cool things that you can do, and places you can visit with the internet. The internet has played a huge roll in my life, even before I "went berry picking".

And now, for the days that I can't seem to get of the couch, but I need a connection...I have a laptop.

I think that for this post, I have simplified my need to connect. Some of you may opt to argue with my "need" and some of you will just get it. Some of you will understand what I mean when I say that I'm not able to get off the couch. Some of you won't understand that. Some of you will think that I am a victim of modern creation.

Whatever it is...I am me, living the best that I can, and using what I can...from stock market, to laptop, to blog.

Emily

my best ideas

My best ideas come to me when I'm thinking...or chatting in an Etsy thread...

MS means that I must act now, not later.

Emily

fundraising time

Em's Slackers

Above, is the link to my MS Walk fund raising page. This is the third year for Em's Slackers, and it will be my second time walking.

I think that I'm more looking forward to the cupcakes that we will be eating after the walk...

Emily

home I will be

This evening wraps up my visit in Kitchener. Tomorrow, I'll return to my "normal" life. I'm looking forward to being snug in my own bed. There is something about being away, that drains me of energy. I have worked hard with myself, to rest when I need rest, and have said for today, and the small part of tomorrow that I will still be here, that I need to lay low.

I'm knackered.

Emily

and you thought that I was kidding...

I haven't posted a Bit in a while. I have made an impromptu excursion to Ladyfingers and Dude's house, which gives me plenty to do.

While fingering through some old photos, I found this, circa 1978:

Ladyfingers and Wonder Woman

I'm not going to do your homework

I feel like I am neglecting an important part of this blog: keeping everyone informed of MS news.

I have neglected to update you on the most recent findings involving Vitamin D, MS and your genes.

I haven't shared the stories of bone or blood marrow transplants in patients with Relapsing-Remitting MS, and the apparent halting and sometimes near reversal of disease activity!

So instead of ignoring this fact, I am here to say that I just can't wrap my brain around the work. In other words, I simply don't have the energy to think. I want to be able to share the information with you, and provide my own commentary as well. I just read the following article 3 or 4 times, I even tried reading from the end first, in an effort to understand it, and summarize it. But I am having no such luck.

If you are interested, you can watch this clip from CTV's, "W-Five", regarding controversial and ground breaking MS treatments:

Stem cell Stories

And if you want to know more about Vitamin D and MS, you can read about it here:

Vitamin D and MS

Oh, and my birthday is in August - not November.

Emily

something strange happened

I was very confused this morning as I sat and ate my cereal. I thought that today was Monday. It had to be Monday, Jason was home yesterday, which obviously meant that yesterday was Sunday. Sunday, Monday...shot day. I flipped to the television listings, only to be reminded that today is in fact, Tuesday.

I had missed the Dancing With the Stars season premiere last night. Not only that, but I must have also missed my Rebif injection, because today certainly wasn't shaping up to feel like a P.I.D. day.

Where was the slight ache in my limbs?

Why was I out of bed?

Why hadn't I woke up in the night with sore legs?

Then I remembered that I did my injection: on a stool in the kitchen. By myself. Icepack within reach. Just me and the teensy weensy needle filled with laboratory mystery serum. Before bed, I popped in 2 ibuprofen.

And now it's 23 hours later, and I'm no worse for wear.

Somebody please pinch me.

Emily