World MS Day

Today, May 29th, is world MS day.

For me, it's a chance to reflect on how MS has affected my life - and how I can continue to ease myself into this.  Let it be a part of my life - and be okay with that.

It's a chance to think about medications, diet, lifestyle.

A chance to do everything I can to bring awareness to the cause. 

To understand, and appreciate, the scientific advancements.

And to hope for better treatments, and someday, a cure.

My journey with MS has just begun, yet it has been the most intense time of my life.  More overwhelming than anything I have encountered.  Harder than finishing two degrees, having two children, building a career.  Becoming part of the MS community, meeting others who understand, and sharing my story - that has been my outlet.  Writing, thinking, speaking - it helps.  So much. 

Recognizing days like today is so important.  It makes me proud to be part of such an amazing group of strong people.

Quilted love

Today, I feel so blessed.

So loved.  And so supported.

There was a knock on the door and my mail carrier passed me a large box.  I wasn't expecting anything, so was really startled.  I noticed the return address (ahem, Becky!), so knew it was something from my family of Mamas around the country.

It is the most amazing - homemade - quilt.

I burst into tears and Oliver stood next to me saying 'Woooooow!  Wow!"

It is beautiful.  And it incorporates so many sentimental aspects - the lemon fabric, the lemonade poem, the hearts and love - and such beautiful, amazing colours.

I love it.  And cannot even begin to express my gratitude.  The planning, time, and commitment making this quilt would have consumed - and it is for me.  To give me a warm hug when I need it.  And to gently remind me that I am loved.

Thank you, friends, from the bottom of my heart.  I am truly privileged to have you all in my life.

Brain-time

You know that feeling - that one that sinks right down into your stomach and makes you feel uneasy?

Homesick.

Reminiscent.

I get that feeling a lot lately.  I notice things from my past, remember events and places, and I can't help but think about how life used to be.

Going alone to my MRI appointment tonight didn't help the nostalgia.  All I could think about was sitting in this exact same seat, 9 months ago, waiting for my first brain MRI.  I was terrified, and desperately seeking answers to what was happening to me.  It didn't matter if they were bad answers - I needed something.

An elderly gentleman waiting for someone in the imaging suite started chatting with me tonight.  He could see from my hospital attire and clipboard full of paperwork that I was waiting for an MRI.  He was polite at first - recommending an astronomy magazine in the waiting area.  We talked about planets and telescopes.  Then he overheard me talking to the MRI tech, who jokingly called me a "pro" because I have been there so many times in the past year.  I know the drill and don't need any explanations.

After the tech left he turned to me and said "Well, whatever it is that you have, I really hope that it isn't serious."

For once, I didn't want to talk about my MS.  I didn't want to share the burden of information.  I just told him "It's okay.  I'll be okay."

After I left the appointment I drove past an old apartment I lived in.  A neighbourhood that used to be my home.

More nostalgia. 

It's as if these moments are cosmically planned for the exact second you are feeling just a touch too vulnerable.

My evening alone, thankfully ended with my lovely friend Trish and a nice big bowl of beef bourguignon.

Comfort food makes everything better.

Illness through the eyes of a child: Guest post

My friend Melissa has shared a story from her childhood - with incredible honesty and personal reflection.  As you'll read below, a child's experience of any disease - MS included - may not be what you think:


----
Illness through the eyes of a child
By Melissa

When I was 11 years old my mom mysteriously lost the sight in her right eye, quite literally overnight. She went to bed with blurry vision and woke up in the morning seeing nothing but grey. It was a rainy Saturday. I remember because my dad had dropped me off at an early morning figure skating practice and I bolted from the car not wanting to get my tights wet because they wouldn’t dry in the rink.

When I was picked up an hour later my sister told me our mom’s eyesight had not improved. I said something smart ass about her just needing glasses.

 

I still recall my sister’s stern response: “Melissa, this is serious. Everything looks brown and she’s going to the hospital.”

 

I remember I stopped smiling and got really quiet.

 

By the time our mom got to the hospital an hour later all she saw in her right eye was black. Nothing. Her eyesight was gone.

 

The neurologists were puzzled. They had no suggestions. It was a scary time. I couldn’t really talk about it with my friends because they couldn’t relate to what I was going through. I felt alone and confused. Extended family members seemed to not know how to talk to my sister and I about what was happening. Well-intentioned relatives seemed to either completely ignore what was going on or ask questions that really should have been directed to adults. At a time when my friends were obsessing over New Kids on the Block, I was preoccupied with wondering if my mom would ever be able to see me again. Would she be okay? Would I?

 

My mom stayed in the hospital for several days, and her eyesight slowly came back. With no diagnosis as to what caused the problem, she was declared “better.” Life went on.

 

--

 

Not knowing why my mom had lost her eyesight was worrisome to me as a kid. Two years prior my dad was diagnosed with pancreatic cancer. Knowing what was wrong with him somehow made it easier to understand what was happening to him, even if no one could tell me whether he would live or not.

I don’t remember my parents telling me my dad had cancer. I figure they must have told me at some point because I wasn’t oblivious to what was happening, but I just don’t remember that moment in time anymore.

 

What I do remember is the look on my grade four teacher’s face when she read the note I handed her from my mom, which came in a sealed envelope so I couldn’t peek.

 

I remember my sister and I visiting my dad in hospital the day after his surgery, but not being allowed to go to his bedside. My mom made us wait in the hallway for my aunt to pick us up, all the while listening to the beep-beep-beep of the various machines hooked up to him and the thwumpa-beep of the respirator. I guess my mom thought we’d be scared to see my dad. I stole a peek into the room and just saw a pile of blankets, a bunch of hanging bags and noisy machines, and my dad’s arm with a tangle of tubing attached. I went back to waiting in the hallway.

 

I remember my best friend deciding one day to stop being friends with me. One day we were friends, and the next day apparently we weren’t. She informed me of this by stuffing a note through the vent in my locker that said if I didn’t grow up that she didn’t want to be friends with me anymore. I don’t know what she was referring to, but I remember feeling like I could throw up. My dad was on death’s door, and I had somehow lost my best friend. I was 9 years old.

 

I remember friends and family members asking me how my dad was doing: was he going to recover or was he going to die? I’d answer the seemingly endless questions, but secretly wish that someone would ask me if I understood what was happening, how I was doing, and if I was okay. But rarely did anyone do that.

 

But by some miracle, and against all odds, my dad survived, though 23 years later his battle with cancer is still ongoing.

 

--

 

A little over a decade after my mom lost—and then re-gained—her eyesight, she suddenly went numb from the waist down. It was a sunny spring afternoon. Once again she went to the doctor, and was finally diagnosed with having MS. That tingling and numbness never fully went away, and her symptoms have only gotten worse over time.

 

She now cannot walk for any amount of distance without assistance. She’s fallen too many times for me to count. It’s a miracle she hasn’t broken anything (yet). We spent Mother’s Day (of all days) three years ago shopping for a walker. The weakness in her arms meant she couldn’t hold her newly born granddaughter in the hospital two years ago. She was in the midst of another “attack” and didn’t have the strength to hold her safely. She’s got other symptoms, many of which she doesn’t talk about.

I’ve had my ups and downs with dealing with my mom’s diagnosis, worrying about her physical and mental health, and how she will cope if my dad—her husband of nearly 41 years, her best friend, and primary care giver—dies. MS has changed our lives in so many ways, and I’m still in an evolving state of emotions. Throughout her good days and her bad days, my mom remains ever positive. She proudly proclaims she has a “rock star parking pass” – which is a sticker for the car that gets her accessible parking. No more circling forever around parking lots. Plus, my daughter LOVES sitting on my mom’s walker and being pushed along.

 

While MS has robbed my mother of so much, it can’t take her laugh, her smile, or her spirit.

"King and lionheart"

Music, for me, is an outlet to my emotions.

I like music that makes me think.  Lyrics that evoke memories, experiences.  Both good and bad.

I've posted about this before here.

Today, "we won't run..."

This is how we do it...

Relapse, that is.

It does get easier.  If I am learning anything, that's it.

I am going on 11 days now, and can't say I am physically feeling better.

Definitely not normal.

I don't think the prednisone worked it's illustrious powers, and I don't think the relapse is done.  But, my soupy withdrawal-brain is slowly recovering.  I can finish a sentence again.  And stand fairly steadily.

Mentally however, I have done a full arc of emotion.  It's a daily adventure of what to expect.

Yesterday I was angry.  Irritated and annoyed.  Today I feel okay.  Not terrified, confused, or sad.

I spent the day with my baby and I revelled in the things he is doing.  I marvel at his new learning, his words (He has a slight speech delay, so this is huge), and his hard-earned thought processes.

This boy is working hard, and that makes me so proud.  That look of achievement on his face is a most rewarding moment of Motherhood.

----

I'd also like to discuss a common misconception about MS.

And that's the correlation of age-at-diagnosis and severity of the disease.

Lately I've been hearing a lot of "Oh, you were diagnosed young, so that's better."

Not true.

Most people with MS are diagnosed between the ages of 20-50.

And yes, individuals who are diagnosed over the age of 50 are statistically more likely to progress to progressive MS faster.

However, an earlier diagnosis mostly means that the disease has more time to actively destroy CNS tissue, thus likely increasing disability. 

But mostly, this disease takes such an individualized pattern that it is impossible to predict the severity of its course or nature of its symptoms.  And it's unfair to make comments that make any form, version, or variant "better" or "worse."

Crash

Prednisone withdrawal.

Crash and burn.

Such an odd sensation.  As if I can actually feel my brain inside my skull.  Feel that something is amiss.

I can't stand straight, I am having hot sweats, feel like I am going to pass out.  I can't focus on voices or words.  Everything makes me angry and snappy.

Who'd have thought 3000 mg of prednisone would have such power?

All this MS malarkey, and even the treatment is a Catch-22.

Thankfully, though, the desire to eat my weight in fried foods has passed.

Just sippin' on some lemonade

A huge thank you to BCIT's Sarah Sangha for such a beautiful job. 

You have helped me convey an important aspect of my life, and I am hoping this interview brings some awareness to Multiple Sclerosis.

The interview hasn't aired yet, but here is a YouTube clip ready to view:

http://www.youtube.com/watch?v=g0oiFVABSgY

 

 

Mother's day

For all Moms, near and far.  This day is for you.

Take a breather.  Enjoy a treat.  Grab extra snuggles.  Kiss harder than you normally would.

And with awe - the utmost of it - stare at your beautiful children, and just seep them in.

This is who makes me a Mother:

 

I love their laughter.  Their innocence.  Their complete wonder with this world.  I love their energy.  Their eagerness.  And their quest for discovery.


And this is my own Mother:

My Mom, Aunt, and Cousin

She has taught me how to be a mother; how to be part of a family.  How to trust that instinct that just doesn't translate into words.  She has taught me to be confident in my decisions and to love fully.

----

Today I finished my infusion at the hospital.  I wore my beautiful Mother's day present from Jack (with explanation for those who gave me that look and thought I was legitimately nuts).

A little weary, a little tired.  But done for now.

And... repeat!

Hospital sheets always smell like death.

In and out today.

I am here so early there are no other patients.  Which I don't like.  I am usually one of those "hospital talkers" people hide from, and I love eavesdropping.  Out of luck today.

There was no steroid-mania last night.  Just a little fogginess and restlessness.  But I managed to get some sleep.

I am still ravenous though.  I could murder a Big Mac.  And my heart is thundering and head is pounding (that precious little Ativan-Prednisone cocktail).

Snap! - Someone has arrived.  The life cycle of a facial cyst has just been explained in great detail - very, very close to the side of my curtain.  I love gross stuff.

Day 2 done.

Steroids, again

Today, I am "MS girl."

From behind the curtains of urgent care, I could hear the nurses calling me that.

It's different down here than up in the MS infusion room.  Very clinical and very rushed.

After a week of my now-usual tingling and numbness on my left side, I awoke to a completely numb right arm.

It was time to make a call.

After lots of behind the scenes arrangements in Neurology, the information was passed through the nurse to my Neurologist, who ordered the IV prednisone and asked me to come in to UBC urgent care. 

I need three days of infusion, and the MS clinic is not open on weekends.  Urgent care is.

So here I sit - for the second time in less than three months. 

It's hard not to think about the failed Rebif, the new Copaxone, and now the Prednisone - again.  And hope that something works. 

I really hope, in this mess of medications, injections and infusions, something - anything - works.

It's hard not to feel defeated.

And frustrated.

But just for the camera, I smiled:

It'll be a fun (Mother's Day!) weekend.

Interview

Thank you BCIT, for this opportunity. 

They arrived at two, stayed for an hour and a half.  And I had all sorts of fun.

I got to "talk" to the side of the camera (without actually looking at the camera).  I got to faux-blog, and even go sit outside in the sun with a refreshing glass of lemonade - all while the camera was rolling.  There was even a slow-motion moment of raising the glass to my lips, taking a sip, and putting it back down again.

These TV people really know how to work the details. 

Cheesy?  Apparently not.  They call it "personal."

And I'll take their word for it - they were consummate professionals. 

I even got to point out the kid-art on the fridge.  SpongeBob was a big hit.  Thanks Jack, for your masterpiece.

Funny how - just last year - in the moment after my diagnosis - I managed to coherently pick a "theme" that would be so media-friendly.  First, in newsprint, I squeezed some lemons.  Today, I got to drink them.

Most importantly - I got to talk about my journey so far.  My struggles, my hopes for the future.  My aspirations to bring awareness to MS - through any mode that I can.

And I think MS needs recognition.  Just a little bit more.

Today I am thinking about...

My foot.  The left one.  Again. 

And my left hand.  Again.

Damn it.

I've felt it festering for a day now.

The tingling and numbness is exacerbated again - spreading to more fingers, and to the bottom of my foot. 

This time, I am having some pain with it.  Mostly with stepping.

I am not sure if things are getting bad because of the heat we've been having (MS can get really bad with an increase in body temperature) or if this is something new. 

As of now - I wait and see how it goes.  How it feels and whether it gets any worse.

I find it mostly affects typing - I end up using only one finger on my left hand, as it's too uncomfortable to use the rest.

Meanwhile - as if on cue - today is my TV interview at home.  Which means, these numb digits and I need to get cleaning.  And do my hair.  Maybe some makeup too.

Coffee time.

1 Day in May

 

May is International MS awareness month.

And this May, the Multiple Sclerosis Society of Canada launched "1 Day in May," a campaign to raise awareness about MS and the lives of Canadians impacted by the disease. 

1 Day in May urges people, with or without MS, to put this disease in the spotlight and support those living with MS.

Canadians are encouraged to choose a day in May to take action for those impacted by MS.  Every single act, big or small, is a step towards a stronger community presence and the collective movement to help end MS in Canada.

There are lots of ideas here:

http://1dayinmay.ca/bepartof/index.php

I wrote to the candidates in my riding for the upcoming election (and actually got responses).

So, are you going to participate?

 

It's the little things...

When your husband can dispose of your full sharps bin at work (so you don't look like a junkie at London Drugs), you know you've got it made...

The little things, I tell ya.

Happy mucky kids!

I have no extraordinary words of wisdom for today.  Just a thought...

I feel so content, relaxed - calm even - (and that makes this whole parenting thing a whole lot easier) when my boys are happy.  When they laugh hysterically, eat lots of ice cream, and enjoy the first hot, sunny weekend of the year.

Whether I am able to join in or not, it doesn't matter. 

Smiles really are great medicine.

Friday night fun...

My Copaxone box o' tricks

I am only 10 days into my new regime, but it still feels very foreign.  Life stops at 7pm every day - I take a bath to warm up my skin, do my injection, then ice it until I cannot feel the stinging.

It's foreign, yes; and a huge nuisance, yes.  But I am no longer scared or anxious.  I just do it. 

That little voice inside me, holding on to the hope that this medication can bring, still believes.

Friday night fun - injection at 7, bed by 8!

Happy weekend everyone!

This is what support looks like:

 

These people, my people, came out early on a Sunday morning.  They commuted from far, wore crazy clothes on public transit, wiped snotty noses on snotty kids, and cheered.

 

They came for me.  And I cannot even express how much that means. 

 

Nobody else on my team has MS.  Nobody else becomes a human pin-cushion or experimental patient.  But - these people - they get it.  They don't need to live it in order to understand it.

 

Thank you for the support, my friends!