Neuro-update

Today was check-up day.

I had the chance to talk with my Neurologist about my stable brain MRIs, my recurring relapses, and where-to-go-from-here in terms of medications.

He confirmed what I had expected:  All of my recent, and constant, disease activity is spinal cord, not brain, related.

So, back I go to repeat cervical and thoracic MRIs to compare with my previous ones showing disease activity at the cervical 4 level.

Because all of my physical presentations in the past year (and everything except for the initial disease presentation four years ago) have either been spinal cord or optic nerve related, we are testing again for Neuromyelitis optica.  Better know as NMO, it's an interbred-cousin of MS that only affects the spinal cord and optic nerves in terms of disease activity, but brain lesions can also be present.  This is a very uncommon form of demyelinating disease, but we need to repeat blood tests as NMO has a very different treatment course (and in fact MS treatments can actually cause NMO to worsen).   I had these blood tests last year, but they only have a 60% accuracy rate when a negative antibody response is seen. 

Mostly likely, they will be negative again.... and this will continue to be the plain-old-variety of MS.

I am going to stay on Copaxone for at least 6 months so we can fully assess its efficacy for me.  We reassess at that point.  And then, if I am still having frequent relapses, my Neurologist wants me to consider Gilenya (an oral medication - not the highly touted Tecfidera that just came on the market), or in the future, Alemtuzumab, which has historically been used to treat Leukemia, but now is focused on MS as an "immune re-boot."

So there you go.  Back to life now...

No changes

Ironically, the day before my MRI results and check-up appointment with my Neurologist, I get a letter from Radiology with the findings from my last MRI.

Essentially:  No changes.

I know this can be interpreted as good:  As far as my brain goes (I didn't repeat the spinal cord MRI this time) things are the same.  Not worse.

But here's what I am feeling:  Nine months of injecting myself and two rounds of prednisone, and nothing is better?  I am the same as I was when I got this horrible diagnosis; my brain is exactly the same.  Every little lesion, dozens of them, including the big one in the left hemisphere, is still there, and measuring just the same.

I assume this means we continue along and see how the Copaxone does in the long term.  Then MRI again.  But, perhaps it means we switch to something else - we had talked about something with better stats at reducing relapses and preventing new lesions (Tysabri), or the newest oral medication just released in Canada (Tecfidera), which my extended health plan makes very difficult to obtain.

I've had 4 relapses in less than a year.  Before that, nothing for almost 4 years.  I want to know what's going on, why it's getting worse, yet why my MRI results are exactly the same.  Some lesions become permanent, and are always visible on brain MRI - so the same symptoms appear and reappear.   Perhaps that's what's happening?   Or, perhaps my relapses are more spinal cord related, and it's time to MRI that area again?

Once I meet with my Neurologist tomorrow, I'll know more.  I have a list of questions written out, and am planning on taking every last second of my appointment time.

Sure, I feel disappointed. 

I'll stare at my syringe tonight - with loathing - and wonder why I bother.  Why I go through this every single day.  Why I chose to start this very intrusive regime for the chance to improve my health, improve how I feel, improve my MRI findings.

And now I know it's done nothing to help. 

But, you know what... I still have to do it.  There is some part of me holding on to the idea that I just need more time. 

Just more time...

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I am focusing on taking this news in stride.  I had an amazing day with my littlest boy and one of my most favourite friends in the world.  We drank coffee, ate muffins, chatted, and walked.  And it was perfect. 

This dear friend, Pam, is getting married in August, and sharing her happiness and joy really makes my heart smile.  I cherish each moment I get to spend with her.

She took Oliver to make his own button at The Regional Assembly of Text, on Main Street in Vancouver.  It was hilarious, yet oh so endearing, to watch.  I love these two:

Filling the void?

They say when you get diagnosed with something, you rush to do all the things you've never done...

Filling the voids; crossing items off the bucket list.

Doing things now, at this exact moment, rather than planning far into the future.

This has been problematic for me lately.  I go through these stages where I come up with something that will make this diagnosis disappear.  Something that will mask it, make me forget it, and re-focus me onto something other than MS.

But it's a double-edged sword.

Yes, it's good to not be MS-centric.  And it's therapeutic to enjoy things that may have been forgotten through the busy last few years of life.

But, it also places way too much importance on things that I don't necessarily need to fill this "void."

In all honesty - I don't need anything.

It's easy to forget about the constants in my life - especially my kids - when it comes to enjoying the littlest things.  It's easy to forget how hilarious it is to watch my boys dance, to watch them seriously barter cookies for gummy bears.  One of my favourite things to do is just watch them - when they don't know it.

So, I wonder - why is that sometimes not enough?  Why do I have this constant brain-badminton about getting a puppy or planning a holiday or finding a part-time job?

Why is it a struggle to just be happy, as is?

It's hard for me to admit this is an issue.  Even simply recognizing it took an evening of those crazy-tears nobody wants to see. 

And as cliché as all this is - sometimes all you need in life is what's staring right back at you.

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:


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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.