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...

Admittance

I have a fantastic group of online Mommy friends.  They get to hear me rant and whine and vent.  Especially now.  But you know what is so fantastic?  They listen, console, (virtual) hug, and offer advice that is do-able and works.  I have only met a few of them in real life, but the entire group of then - more than a hundred - have helped me more than I can say.

When I vented about my current mind-frame, and how alone and sad I was starting to get, many of them suggested that perhaps I was appearing to be "coping too well" to the outside eye.  Maybe it was time to share some of my other, perhaps less-pleasant, feelings.

So here goes...

I feel alone.

I feel sad.

I feel scared.

I feel stressed.

I wish I had more offers of help.  Even a phone call or email to see how I am doing.  A card in the mail or a visit for coffee and cake.  I love each and every person who is in my life, and I want them to know how I am feeling.  I know that many friends and family will not know what to say or do to make me feel "better," but that's okay.  Say and do whatever you want.  We can talk about other things.  We can just hang out.  It can be 5 minutes or 5 hours.  It all helps.  And it all makes me feel more human and more happy.  And right now, anything that enduces happiness is a good thing.

People - I miss you.  Let's have some time together.

Blood

I will push aside hunky Dexter (get it?... blood?) from my mind, and do the update...

I go to the lab every 4 weeks for a full work up to ensure my medication is not sneakily affecting my body in any negative ways.  It can be prone to do that - especially to the liver. 

I now have my baseline results, month 1 at titrating dose, and month 2 at full dose.  The scoop?  No adverse changes!  Despite the headaches, pains, chills, needle marks and red splotches now covering my "fatty bits," my body is taking this medication in; letting it do it's work.

I'll get to see my spinal cord MRI results next week to go lesion-hunting.  I only hope there is good news on that front too.

Hallelujah for small victories.  The wine will be moderately flowing on non-injection nights!

Three month thoughts

Three months ago today I got my diagnosis.

There has been a lot to digest in that time.  So much to intellectually understand, yet even more to emotionally understand.  Yet the need to emotionally commit myself to this diagnosis.  Fight the fear of knowing and dive head first into the unknowing.

I have come to the conclusion that if this diagnosis needs to serve a purpose in my life, that lesson is:

Learn how to lose control.  And learn how to be okay with that.

This process takes vivid and deliberate reactions to life.  Giving myself daily instructions, motivations, or guides.  Moving slowly through life; allowing myself time to gauge my own reactions.  How do I feel?  What do I think?  How can I turn this moment into something positive? 

What can I do to allow my life to re-focus and return to normality?

 

How do I stop myself from getting depressed, sad, lonely?

Whether it be moments, days, or longer, it was (and still is) important for me to come to this stage.  To resist the urge to wish for another body or ask “why me?”  To come to the realization that this is it.  And I am the person alive inside this body.  This is my shot at life. 

Losing control, in this sense, does not mean I plan to stop fighting against my disease.  Simply, I think it becomes an acceptance of it.  Yup, it’s there, it’s not leaving, and yes, I am still going to do everything I can to fight it.

 

But, like life itself, it's a process... and my new mantra of "letting go" continues...

 

 

Walk with me!

Join my team for the 2013 Vancouver MS walk!  We are called "Making Lemonade" and you can find us here:

http://mssoc.convio.net/site/TR/Walk/BCandYukonDivision?px=1643137&pg=personal&fr_id=1924

To those who have donated already, I am beyond touched by your generosity and support.  Thank you for all the love!