Archive for October, 2013

Ooops I forgot … again!

Written by on October 29th, 2013 – 6 Comments

So last week I was asked to stay late at work, no problem, I said.  4:50 rolled around and only then did I remember that I was supposed to meet a friend for dinner at 5pm. .. ugggh!  This is the 2nd time in a month that I’ve done this! 

One symptom of MS that never seems to leave me is the cognitive problems, difficulties with attention/ distractions and particularly memory concerns.  At times it is embarrassing, especially when I can’t remember a name of someone I’ve met several times, or forget a dinner date!  At other times it’s really frustrating and difficult. 

I know that many others also experience the same thing.  Over the years I’ve learned to make lists, use a calendar and try mnemonic devices.  The best strategy I’ve found is to use a smart phone.  I finally caved and bought a smart phone this summer.  I got it strictly for other reasons and never thought it would help manage my life and be such a great memory tool, but it is.  I love that it has everything I need, notes, calendar, and multiple alarms for reminders in one small package.  It definitely is nice not carrying an agenda around everywhere.  Now the trick is to check the calendar before making additional commitments so I don’t double book myself!

If any of you have any other creative memory tricks maybe you could leave a comment here!  I know I could use them, and I’m sure others could too!

we are expanding our home … by 2 feet

Written by on October 24th, 2013 – 5 Comments

 

Yep we have only been living here a year, but time for an expansion … “by 2 feet” 🙂 Yep that’s right, come January 2014 my husband and I will be expecting our 1st little baby to arrive! 🙂

If you think people have opinions about MS or ANY other illness/treatment you use, wait until you are planning on having a baby or are pregnant, then the questions REALLY come.

 

a)     Are you sure you can get pregnant?

b)     Are you sure you’re going to be able to look after a baby?

c)      What if you’re tired all the time?

d)     What if your MS flares up and you end up in a wheelchair with a baby?

e)     What if both you and baby get sick and your husband is left to take care of you?

f)       What if your MS doesn’t go into remission when you’re pregnant and you have a flare up?

g)     Will you go off drugs before you get pregnant?

h)     What if you get sick off your medication?

i)       How will you live with yourself if you don’t get back to “normal” post baby?

You can see the pattern it goes in, all valid questions, but good thing there aren’t 50 letters in the alphabet or I was in for A LOT of questions!

I will summarize all these questions with ONE answer … “I don’t know, now be happy for me”. 

(more…)

Ask Aaron – Oct 28th

Written by on October 21st, 2013 – 1 Comment

The Ask Aaron section will be open this Oct 28th! Please feel free to stop in and ask any questions you have about being a young person living with MS. I’m really looking forward to this.

Aaron

MS Society note: Aaron Solowoniuk is the MS Society youth ambassador and the drummer for the band Billy Talent. The ‘Ask Aaron’ section will be found in the forum.

MS on the Big Screen at the Vancouver International Film Festival

Written by on October 19th, 2013 – No Comments

A few weeks ago, the Vancouver International Film Festival (VIFF) screened a documentary that I wish everyone could see called When I Walk by Jason DaSilva, a graduate of Emily Carr University of Art & Design, right here in Vancouver.

Jason is a young filmmaker who decided to turn his camera on himself to document his transformation from able-bodied to a person living with a disability. It is a stunning piece of work.

In the first few minutes of the film, you see how totally by accident Jason captured the first real sign that something was terribly wrong with his body. He’s standing on a sandy beach while on vacation and falls down and then no matter how hard he struggles, cannot stand up. His friends come to help get him upright again but once they let go, Jason immediately crumples to the ground again. Stunned, my friend (who has MS) and I turned to one another and mouthed the word “WOW!” at each other. I cannot adequately express how deeply this opening sequence impacted us, knowing what we know about demyelinating diseases.

(more…)

Webinar invitation – Working it out: MS & employment

Written by on October 16th, 2013 – 1 Comment

Interested?  This event is happening Saturday Nov 16 at 1:00 pm (Eastern time)

Option 1 – webinar

Option 2 – Attend in-person in Toronto

We know the unpredictable and episodic nature of MS often leaves people with many overwhelming questions and decisions relating to employment.  This session will help participants navigate the landscape of employment issues as they relate to MS. A lawyer will highlight rights and obligations of employees and employers, a specialist on episodic disabilities will discuss general considerations when looking for work as well as provide an overview of income replacement programs, and an employment counselor – who also lives with MS – will discuss issues of disclosure, communication tips to employers, and thoughts on making future career decisions.

Click here for more information or to register for this event.

Maven of the dance floor

Written by on October 15th, 2013 – 1 Comment

My momma has always been a great dancer, and I learned from the best.  She lets the music take over and she floats over that dance floor…. or rather, she did.

She spent too much time cooped up on the top floor of an inaccessible home; too much time hopped up on more meds than you can count; too many hours in pointless doctors’ visits.

But last night… she danced.  In her new gogo-scooter at a family event… she ‘chair-danced’ a la Claire Huxtable, boppin’ her top half like the maven she is.

My step-dad was on top of the world.  She couldn’t stop smiling.  And all I could do was stand there and watch, mesmerized.

She hasn’t walked in 2 + years…. but last night, she danced.

It’s About the Small Things

Written by on October 8th, 2013 – 1 Comment

As I have said many times in my past articles, life is complex and complicated with MS. It’s a never ending rollercoaster ride that I am certain we would all disembark if we had the chance. The feeling of glee when flying along that coaster track never comes. It seems that the stomach dropping free-fall feeling is ceaseless. So with the happy moments of life with MS fleeting and rare, what is it that makes us smile when we want nothing more than to fall into a heap of tears at the end of the day? For me, it’s the small things. (more…)

My Story

Written by on October 1st, 2013 – 8 Comments

Welcome to my very first blog post! I am going to take this opportunity to introduce myself and share a bit of my “MS story.”

I am 28 years old and I have been living with MS for almost 4 years. It has been one hell of a journey, let me tell you.  While being an MS patient is a significant part of my life, I prefer not to define myself as such.  I prefer to define myself as a University student, an Administrator at a film production company, an older sister to two younger sisters, a daughter to my amazingly supportive parents, a good friend, and a girlfriend to the kindest, most thoughtful man I have ever known. Most importantly, I like to define myself as an independent young woman.

I have always been an independent person. Time after time though, MS tries to take away that independence.  Sometime it succeeds, but usually it does not.  When I was 24, I was in my prime.  I had, through exercise and healthy eating, lost 80 pounds.  I felt really proud of this accomplishment, and my confidence was through the roof.  I was working full time at a great job, which allowed me to travel with a good friend quite frequently. About a month after my weigh-in at the 80 pound goal, I woke up one morning with the worst headache of my life.

(more…)