See...!

It does exist; and it lives at Chapters.  If you, like me, laughed until you cried, then this baby will cure any insatiable thirst for knowledge you may have!

Inspiration

If MS had an embassador - a real-life spokesperson - this guy would be it.

His name is Jason DaSilva.

He has primary progressive MS (which is different than my variety - I have the more common relapsing remitting MS).  His condition is much worse than mine. 

He spent part of his life in Vancouver and now is a film maker in New York.  His newest work was just featured at the Sundance Film Festival. 

It documents his life, his journey, his MS.  And this man has become my new hero.

Here is the short trailer and website:

http://www.wheniwalk.com/

Emotional dehydration

Emotions are not coming easily to me.  It's been like this for months.  I feel this unknown weight inside of me - this weight that wants to come bursting out.  This weight that wants to cry and scream and just let it all go.  I want to let go - unload - some of this emotion.

I want to, but I can't.

Not when it comes to directly facing this.  Not when it's just me in a room, alone with my thoughts.

If multiple sclerosis had eyes, I feel like I still couldn't look into them - 5 months later.

Last night, as I was trying to fall asleep, the only thought that kept creeping into my subconsciousness was this:

"This is my new forever"

And it's true.  This is my "forever."  This will be a constant in my life.  When people, jobs, and homes come and go, this will always be here.  Always.  And I hate that.

I just need to say that... I hate that...



(I know this is depressing, sorry - but unloading it - and writing it - helps)

Support

The value of support, and in turn, it's exact important in my life, has changed so drastically over the past few months.

It comes in different forms, evokes different emotions.  But always warms my heart.

It has been little things, and big things...

The sharing of personal information and experiences to help me feel less alone.

A nice fuzzy pair of socks to "warm my tingly toes," a delivery of Indian food for dinner, or a gift from friends across the country.

It all comes down to the people - my friends, my family, and recently - complete strangers.

I joined a MS support group this week.  It is for newly diagnosed young people.  There are only 6 people in the group and we meet once a month.  We spent almost 3 hours talking about needles and injections and supplements.  We lifted our shirts and shared our bruised battle scars.  We debated treatment vs non-treatment.  We shared our diagnosis stories. 

I don't feel like I learned anything new about this disease or how I will treat it, react to it, or live with it.  But I truly learned I am not alone in this.  Reiterating this over and over again - that is crucial.

People who "get it" because they live it.  I need to saturate myself in that. 

And that very night, after my emotion-filled support group meeting, I was usurped by some Mama-friends for an evening out.  They took me to dinner and presented me with a gift.  A gift that I still, a day later, cannot fully comprehend.  These women have given their hearts, time (and wallets!) to me in perhaps the most generous showing of support I have ever seen.  They collectively decided to help me with the things I am struggling with the most - cooking, cleaning, and childcare.  Just because they could and just because they wanted to.  They have lifted some stress, brought my shoulders down a little, and I feel like I can breathe.  And smile.  Lots.

A yearly goodbye

I went to buy a bottle of bubbly for tonight and, while paying, was asked what my resolutions for 2013 are.  I stood there, silent and stunned.  A million thoughts ran through my head.  I could have had an hour long conversation with this man - pouring out every last thought and detail - right from the bottom of my soul.  Everything that has happened in 2012, and why I will be so glad to see it gone.  Instead, I told him I try not to make resolutions.  They turn life into something "achievable" rather than something to enjoy.

That being said - 2012 was a very difficult year for me.  It has brought a multitude of huge changes in my life.  Changes that will never go away.  Changes that have been excruciating and confusing to accept.  I don't anticipate that the dawn of a new year will make those emotions disappear.  It is impossible for them to simply vanish.

But 2013 will bring a new start.  It will not be the year I got diagnosed.  It will not be the year my concept of me got flipped on its axis. 

So, tonight, with my bubbly, rather than welcome 2013 with a list of resolutions, I will excitedly, yet probably with tears, say goodbye to 2012.   My hope for 2013 is one of health and happiness.

Something beautiful

The lure of a tattoo has been with me for a while:  Creating meaningful permanence.  Reclaiming some of the control I have lost from my body. 

I wanted something with personal importance.  And I wanted something that would signify a certain moment in my life.

What better time than now...

I decided on a small feather with a tangled, flawed area.  I wanted something that symbolizes freedom and strength, yet more importantly, something to act as a reminder that despite this terrifying disease, my life can be beautiful and awe-inspiring.  Imperfections included.

Merry Christmas and Happy Holidays.  Enjoy the beauty in life.  And embrace your imperfections.

 

 





The diagnosis continuum

Today I saw my neurologist.  We discussed my first 2 months on medication, the side-effects, my small relapse, and then, my MRI results.

The pessimistic realist in me expected the results to be bad - I assumed it would be an abnormal MRI.  There would be lesions.

Yet, although expected, there was still so much emotional sadness and surprise when he told me my spinal cord is now affected as well. 

I have one transverse lesion at C4 (cervical vertebrae 4).  This means it occupies almost the entire horizontal space at that level of my spinal cord.  There are usually fewer lesions in the spinal cord than the brain - for physical-space and anatomical reasons.   So, the fact that I have more than twelve in my brain and just the one on my spinal cord does not matter.  My entire central nervous system is officially affected by this horrifyingly scary disease.

I feel invaded.  Occupied.

And perhaps, more-so right this moment, sad.  I don't know why - the MS is not new.  And the diagnosis is not new.  But knowing that this disease is now all-encompassing in my body makes it that much more daunting.  That much more overwhelming.

And so, we continue.  Blood tests every 4 weeks; Neurologist appointment and MRI every 6 months.

I gotta breathe this all in for a while...