Resolutions. I hate them. Because I always set myself up to fail.
Stop biting my nails, stop cracking my knuckles.
This year - I just want happiness. I want to make choices in my life that induce it. Surround myself with the people and things that conjure up a laugh or smile.
I wouldn't label that a resolution, per se, but rather a more conscious way of living.
2013 was my first full year living with my new normal. Trying to embrace this permanently-revised-version-of-me.
With full candor, it started with incredible amounts of fear and anxiety.
But, the acceptance I have been (impatiently) searching for - regarding my disease - has finally shown its head. The process has been emotionally encompassed. It took about 16 months.
Much longer than anticipated. But I am okay with that.
Now, it feels part of me. Not all of me.
I can inject myself daily, without a second thought, I can deal with symptoms, daily, and move on. And - the big one for me - I can look at young people with canes, wheelchairs, and scooters without that I-need-to-breathe-into-a-bag hypothetical dread.
Of course, it is still an evolving acceptance. One that continues to pose many questions and doubts.
But I am so proud of my 2013. Simply for recognizing and accepting my fate.
Here's to an incredible 2014 for us all!
Tuesday 31 December 2013
Sunday 29 December 2013
Holiday riddance!
It's that time. Chuck out the tree, get rid of the festive-smelling candles. Find all glitter, and suck it away. Be gone, holiday-house-vomit.
Holiday time is as exciting as it gets, and this year was a good one (thank you, boys, you make Christmas so fun).
But, I am happy to have my living room back.
And I am thrilled to report I cooked, hosted (read: survived. Thank you wine) my first ever solo Christmas dinner. Lots of family were away this year, so it was small and simple, but I plan to use the but-I-did-Christmas-2013 'til it goes out of style.
For the enquiring minds out there, yes, I got my coveted garlic press! And some other practical goods:
And there you are... an I-got-woken-up-at-4:45-am picture of me in my reindeer jammies. Gum and Tylenol, apparently I use a lot of it?
But better than any gift under the tree or in a stocking, were the smiles of excitement and happiness planted on my boys' faces. A truly wonderful gift, chaos and all.
I hope you all had a chance to revel in happiness and love. In whatever form it comes to you.
Holiday time is as exciting as it gets, and this year was a good one (thank you, boys, you make Christmas so fun).
But, I am happy to have my living room back.
And I am thrilled to report I cooked, hosted (read: survived. Thank you wine) my first ever solo Christmas dinner. Lots of family were away this year, so it was small and simple, but I plan to use the but-I-did-Christmas-2013 'til it goes out of style.
For the enquiring minds out there, yes, I got my coveted garlic press! And some other practical goods:
And there you are... an I-got-woken-up-at-4:45-am picture of me in my reindeer jammies. Gum and Tylenol, apparently I use a lot of it?
But better than any gift under the tree or in a stocking, were the smiles of excitement and happiness planted on my boys' faces. A truly wonderful gift, chaos and all.
I hope you all had a chance to revel in happiness and love. In whatever form it comes to you.
Monday 23 December 2013
Over-sensation
Ah, Christmastime. So relaxing, so calm.
Or in this family - a complete frenzy of everything.
And how does my body react?
The brain fog moves in; weakness and dizziness; and I start fainting. And it happened at the grocery store again.
I now recognize this feeling so well I know I have about 5 minutes to sit down, eat, and cool off. I know what my triggers are. Otherwise it's splat.
So there I sat, down the vitamin aisle (the only place I could find a chair; I guess vitamins are a very contemplative shopping experience). I swiped a Kit Kat bar, ate it, then stuck my head between my legs.
It's not a "normal" light-headed spinning feeling. It's more of a my-brain-has-stopped-working-and-only-communicates-in-semi-conscious-buzzes.
I can only focus on one sound or thought or sight at a time.
The strangest (over-) sensation.
But luckily, all the Christmas preparations are done. Dinner is planned and shopped for, the presents are bought and wrapped. I can just sit in bed and ride this one out. Heaven, right?
Or in this family - a complete frenzy of everything.
And how does my body react?
The brain fog moves in; weakness and dizziness; and I start fainting. And it happened at the grocery store again.
I now recognize this feeling so well I know I have about 5 minutes to sit down, eat, and cool off. I know what my triggers are. Otherwise it's splat.
So there I sat, down the vitamin aisle (the only place I could find a chair; I guess vitamins are a very contemplative shopping experience). I swiped a Kit Kat bar, ate it, then stuck my head between my legs.
It's not a "normal" light-headed spinning feeling. It's more of a my-brain-has-stopped-working-and-only-communicates-in-semi-conscious-buzzes.
I can only focus on one sound or thought or sight at a time.
The strangest (over-) sensation.
But luckily, all the Christmas preparations are done. Dinner is planned and shopped for, the presents are bought and wrapped. I can just sit in bed and ride this one out. Heaven, right?
Friday 20 December 2013
Dust off your walking shoes...
It's time to join my team for the MS Walk! Join me on Sunday, April 13, in Vancouver. It is a beautiful walk around Stanley Park, accessible to all, and I would love to see you and your families there.
We all wear yellow (usually tacky), have signs, banners, balloons, and buttons - it is truly a fun and important day.
Or, if you are feeling generous, please support this most important cause with a donation.
Multiple Sclerosis is a debilitating disease with no cure that affects approximately 100,000 Canadians. It is a very personal disease that affects no two people the same. Research is desperately needed to investigate treatment options, and perhaps, one day, a cure.
Team Making Lemonade is back for 2014!
Click here to join or donate.
We all wear yellow (usually tacky), have signs, banners, balloons, and buttons - it is truly a fun and important day.
Or, if you are feeling generous, please support this most important cause with a donation.
Multiple Sclerosis is a debilitating disease with no cure that affects approximately 100,000 Canadians. It is a very personal disease that affects no two people the same. Research is desperately needed to investigate treatment options, and perhaps, one day, a cure.
Team Making Lemonade is back for 2014!
Click here to join or donate.
Monday 16 December 2013
Time for some sap
I realize my last post may have been a little bah humbug. A little too negative.
Because, in all reality, I love this time of year. And it's not fair to downplay that. To forget how important Christmas was to me as a kid. The familial bickering about whether the turkey was cooked. Is that odd jello salad dinner or dessert?
It's important to pass that sense of wonder, and hilarity, on.
Sure, the little rascals are already waking up extra early (simmer down boys, 9 nights to go). We are singing ghastly renditions of all-things-Christmas, and I may have spent all of last Saturday in sweat pants, eating chips and watching National Lampoon's Christmas Vacation.
It's not about the gifts (all I really want this year is a good book and a new garlic press) and it's not about money. It's about taking stock of what we have. What we already have. What makes our clocks tick and our lives go on. And celebrating that. (Mental note for next week, Sarah).
And to let the magic soak right in. Early morning boogers and all.
Thanks M, for filling my freezer once again, and for bringing me a few holiday treats. This simple act will reduce my stress, symptoms, and anxiety. I appreciate you more than you know.
(And you have great taste in wine...)
Because, in all reality, I love this time of year. And it's not fair to downplay that. To forget how important Christmas was to me as a kid. The familial bickering about whether the turkey was cooked. Is that odd jello salad dinner or dessert?
It's important to pass that sense of wonder, and hilarity, on.
Sure, the little rascals are already waking up extra early (simmer down boys, 9 nights to go). We are singing ghastly renditions of all-things-Christmas, and I may have spent all of last Saturday in sweat pants, eating chips and watching National Lampoon's Christmas Vacation.
It's not about the gifts (all I really want this year is a good book and a new garlic press) and it's not about money. It's about taking stock of what we have. What we already have. What makes our clocks tick and our lives go on. And celebrating that. (Mental note for next week, Sarah).
And to let the magic soak right in. Early morning boogers and all.
Thanks M, for filling my freezer once again, and for bringing me a few holiday treats. This simple act will reduce my stress, symptoms, and anxiety. I appreciate you more than you know.
(And you have great taste in wine...)
Tuesday 10 December 2013
That Christmas feeling
Christmas is the time of year that is perpetually happy. The tree is up; the house smothered in festive attire.
The elf has come to watch over the boys.
The snow pants have made their first appearance.
There is novelty in shoveling.
But there is part of me that still wonders if all this becomes a charade. Living vicariously through the joy of childhood just to ignore all the stuff going on.
If I can decorate the house and buy lots of presents, perhaps I'll forget about the symptoms?
My friend Emily, who lives with schwannomatosis, wrote about this very thought on her blog today. She is a strong, passionate Mama of two boys, living with a chronic, unpredictable disease too. Despite our very different afflictions, we share a lot of the same emotional reactions to what's been hurled our ways.
I second her thought that, in fact, I am not a miserable sod right now. It's just a little tricky sorting through this mess of frenzied-child-excitement while dealing with my dysfunctional self.
Santa better bring you that red, Em!
Tuesday 3 December 2013
Blogging with wine
Part two.
Tonight I celebrate the end of my 4-week-long-eye-twitch.
With a glass of crisp smooth Pinot Gris from Peller Estates . Another B.C. wine that does the trick on a Tuesday night (Is that saying much?).
So, yes - every few seconds, for 4 weeks, my left eye and lid stopped, jumped frantically, then rested again.
I have a lot of optical symptoms with my MS, and a lot of random twitchiness. This was my longest - and most annoying - so far.
But for now - my eyes are back to their usual tricks - making stationary objects look like they are moving, and altering my depth perception just enough so that I always think something is going to come crashing into me - even if it is meters away. So very odd.
The boys are bathed, reading homework is done, math practice is done, and this week's spelling words have been printed.
Time for some stylish flannel reindeer pajamas, The Killing, and a big glass of this.
Tonight I celebrate the end of my 4-week-long-eye-twitch.
With a glass of crisp smooth Pinot Gris from Peller Estates . Another B.C. wine that does the trick on a Tuesday night (Is that saying much?).
So, yes - every few seconds, for 4 weeks, my left eye and lid stopped, jumped frantically, then rested again.
I have a lot of optical symptoms with my MS, and a lot of random twitchiness. This was my longest - and most annoying - so far.
But for now - my eyes are back to their usual tricks - making stationary objects look like they are moving, and altering my depth perception just enough so that I always think something is going to come crashing into me - even if it is meters away. So very odd.
The boys are bathed, reading homework is done, math practice is done, and this week's spelling words have been printed.
Time for some stylish flannel reindeer pajamas, The Killing, and a big glass of this.
Sunday 24 November 2013
Sunday smiles
It was a hard week for me - feeling stressed, exhausted, and twitchy. By Friday, with an extra day off school, the kids were wild jumping machines. Pushing each other, talking back to me, and testing every single limit.
A short trip for groceries turned into swears muttered under my breath and the bluffed threat of Santa not coming this year.
So I had a break. And they had a break.
And today, my untiring oldest came up to me, hugged me with his hardest squeeze, told me I was a great Mommy, a pretty Mommy, and that he loved me. I even got a kiss.
Parenting is the hardest "job" I've ever had, but moments like these don't compare to anything in the world. At all.
A short trip for groceries turned into swears muttered under my breath and the bluffed threat of Santa not coming this year.
So I had a break. And they had a break.
And today, my untiring oldest came up to me, hugged me with his hardest squeeze, told me I was a great Mommy, a pretty Mommy, and that he loved me. I even got a kiss.
Parenting is the hardest "job" I've ever had, but moments like these don't compare to anything in the world. At all.
Sunday 17 November 2013
A medium reading
I am usually a pragmatic, scientific person. A natural skeptic.
But I've always been curious about mediumship and connecting with spirits. I think it took the death of a very loved person and my own health battles to truly open me up to believing.
Tonight I experienced it for the first time. A small group session with a medium. She did not know anything about us beforehand - not even our names.
You need to be open for this sort of experience to work. No anxiousness; no disbelief.
And honestly - I was blown away.
My sister Erin was there too, and we were both hoping to connect with our step-Dad, Robin. We were both open to the experience, and still very much feel his presence in our lives, so were hoping for a connection.
Mediums can work in many ways - they can sense things, see things, hear things or use their intuition. They can tell you things about a departed person, but they can also tell you things about yourself. They can sometimes give specifics about the departed, like sex, age, name. They can give general images - a "clue" if you will - something that connects you to this person. Something that only you would know.
The medium went to Erin first - and sensed a male - in a protecting relationship. Then the information came rolling fast - many identifying clues (a specific hat, the appearance of a skeleton and bones). The medium asked about blood tests in general, and eventually, was getting a message about something inflammatory happening to me. She asked if I had recently had a diagnosis. Then she asked if it was MS. She was also able to pick up details about when Robin passed away.
It was emotional. And exhausting. And here I sit, way past my bedtime. I cant stop thinking about this experience. I feel like I received some sort of confirmation tonight. Of what, exactly, I don't know. An energy? A force within ourselves? Within the universe?
It was amazing.
But I've always been curious about mediumship and connecting with spirits. I think it took the death of a very loved person and my own health battles to truly open me up to believing.
Tonight I experienced it for the first time. A small group session with a medium. She did not know anything about us beforehand - not even our names.
You need to be open for this sort of experience to work. No anxiousness; no disbelief.
And honestly - I was blown away.
My sister Erin was there too, and we were both hoping to connect with our step-Dad, Robin. We were both open to the experience, and still very much feel his presence in our lives, so were hoping for a connection.
Mediums can work in many ways - they can sense things, see things, hear things or use their intuition. They can tell you things about a departed person, but they can also tell you things about yourself. They can sometimes give specifics about the departed, like sex, age, name. They can give general images - a "clue" if you will - something that connects you to this person. Something that only you would know.
The medium went to Erin first - and sensed a male - in a protecting relationship. Then the information came rolling fast - many identifying clues (a specific hat, the appearance of a skeleton and bones). The medium asked about blood tests in general, and eventually, was getting a message about something inflammatory happening to me. She asked if I had recently had a diagnosis. Then she asked if it was MS. She was also able to pick up details about when Robin passed away.
It was emotional. And exhausting. And here I sit, way past my bedtime. I cant stop thinking about this experience. I feel like I received some sort of confirmation tonight. Of what, exactly, I don't know. An energy? A force within ourselves? Within the universe?
It was amazing.
Thursday 14 November 2013
The angel, again...
We all have those sentimental little baubles. Small treasures; Big importance.
Mine was my guardian angel necklace. I bought it for myself right after my diagnosis, when I was looking for something, anything, to help with the process of acceptance. I wrote about it here.
I wore it almost every day. And it helped.
Yesterday, as Oliver and I walked up the hill to get Jack from school, the clasp broke, and as if in slow motion, it fell from my neck. It was a poignant moment as I caught the angel in my hands. Of all things to break - my guardian angel. It really made me think about why I've been wearing her around my neck for almost a year and a half. Did I still need her? Was I just being silly? Maybe that's why she broke?
I wasn't ready to part with her, so decided to see if I could get the necklace fixed. A jewellery repair place quoted me $40 and a trip to Toronto for some sort of special clasp. Complete BS. So I went to Blue Ruby Metrotown, where I bought it (for only about $50) to see if they had any suggestions. Not only did they help me - they took my necklace, worked their magic with a pair of pliers and a new clasp, and fixed it right then and there. For free. That is some serious customer service. To help a customer with an old necklace, a broken clasp, and a lot of sentimental value.
Thanks Blue Ruby, you made my day.
Mine was my guardian angel necklace. I bought it for myself right after my diagnosis, when I was looking for something, anything, to help with the process of acceptance. I wrote about it here.
I wore it almost every day. And it helped.
Yesterday, as Oliver and I walked up the hill to get Jack from school, the clasp broke, and as if in slow motion, it fell from my neck. It was a poignant moment as I caught the angel in my hands. Of all things to break - my guardian angel. It really made me think about why I've been wearing her around my neck for almost a year and a half. Did I still need her? Was I just being silly? Maybe that's why she broke?
I wasn't ready to part with her, so decided to see if I could get the necklace fixed. A jewellery repair place quoted me $40 and a trip to Toronto for some sort of special clasp. Complete BS. So I went to Blue Ruby Metrotown, where I bought it (for only about $50) to see if they had any suggestions. Not only did they help me - they took my necklace, worked their magic with a pair of pliers and a new clasp, and fixed it right then and there. For free. That is some serious customer service. To help a customer with an old necklace, a broken clasp, and a lot of sentimental value.
Thanks Blue Ruby, you made my day.
Friday 8 November 2013
Medikidz
I am very excited about this new MS resource for kids.
Finally - a cool, very-kid-friendly way to start discussion and answer questions.
With superheroes.
Thanks to the MS Society of B.C. for sending Jack a copy!
The Medikidz collection covers numerous other medical issues too - check them all out here!
(If only I had this brilliant idea first!)
Finally - a cool, very-kid-friendly way to start discussion and answer questions.
With superheroes.
Thanks to the MS Society of B.C. for sending Jack a copy!
The Medikidz collection covers numerous other medical issues too - check them all out here!
(If only I had this brilliant idea first!)
Friday 1 November 2013
Cough, "zap," cough...
Healthy adults recover from a cold or flu in about 3-5 days. For those with compromised immune systems, it drags on and on...
Everyone wondered why I was always sick.
Years later - add the immune-modulating medication into the mix, and I wonder if I'll spend the entire winter dueling with my immune system.
Here's why:
When a person with an autoimmune disease gets sick, those fighter T-cells from the immune system that are supposed to destroy the invading bacteria or virus attack the body instead of the real culprits.
With MS, the attack means that inflammation in the nervous system will likely occur, causing present or past symptoms to worsen and perhaps causing new symptoms to appear. The probability of a relapse is high.
My boys got sick, and got better.
And now here I am - a week later - getting worse. And it's just a simple cold.
A simple cold that for me, also means a tingling and numb left foot and hands, a weak right leg, a crawling sensation all over my face, a continuously vibrating eye, and weird little "zaps" around my body.
And I know someone will ask... No flu shot for me - it triggers an even worse immune response.
But thank you Benylin for drugging me just enough.
As unpleasant as it is to experience, the science behind it is fascinating.
I'm tempted to put my degrees to work and create a controlled experiment right here!
Everyone wondered why I was always sick.
Years later - add the immune-modulating medication into the mix, and I wonder if I'll spend the entire winter dueling with my immune system.
Here's why:
When a person with an autoimmune disease gets sick, those fighter T-cells from the immune system that are supposed to destroy the invading bacteria or virus attack the body instead of the real culprits.
With MS, the attack means that inflammation in the nervous system will likely occur, causing present or past symptoms to worsen and perhaps causing new symptoms to appear. The probability of a relapse is high.
My boys got sick, and got better.
And now here I am - a week later - getting worse. And it's just a simple cold.
A simple cold that for me, also means a tingling and numb left foot and hands, a weak right leg, a crawling sensation all over my face, a continuously vibrating eye, and weird little "zaps" around my body.
And I know someone will ask... No flu shot for me - it triggers an even worse immune response.
But thank you Benylin for drugging me just enough.
As unpleasant as it is to experience, the science behind it is fascinating.
I'm tempted to put my degrees to work and create a controlled experiment right here!
Wednesday 30 October 2013
The controversy of life and death
It's a controversial elephant in the room, but it is deserving of thought and conversation.
The topic of assisted suicide comes up in life, the media, and now government - again.
Elayne Shapray has had MS for 30 years, and, as it often does, has progressed to the point of severe disability. This incredible woman has been a champion of MS research and advocacy for many years. Usually also being the top fundraiser at the Vancouver MS walk each year. Now she has chosen to fight this difficult legal battle - for all people suffering from debilitating diseases.
As you can see in the video, this issue is not new in Canada, or B.C., yet when it touches home like this, it makes you think differently.
Until you are faced with these life situations yourself, it's a non-issue.
The right to defend your body. Your life. Who gets to make that decision?
See the latest CBC coverage here.
The topic of assisted suicide comes up in life, the media, and now government - again.
Elayne Shapray has had MS for 30 years, and, as it often does, has progressed to the point of severe disability. This incredible woman has been a champion of MS research and advocacy for many years. Usually also being the top fundraiser at the Vancouver MS walk each year. Now she has chosen to fight this difficult legal battle - for all people suffering from debilitating diseases.
As you can see in the video, this issue is not new in Canada, or B.C., yet when it touches home like this, it makes you think differently.
Until you are faced with these life situations yourself, it's a non-issue.
The right to defend your body. Your life. Who gets to make that decision?
See the latest CBC coverage here.
Tuesday 29 October 2013
20 questions
Copying my son's grade 1 routine for show-and-tell, plus responding to cries of tell us more about YOU...
Lists and questions: two of my favourite things!
Here goes.
1. The book that changed my life: "The Alchemist" by Paulo Coelho.
2. The quote that keeps me sane: "This too shall pass."
3. The best advice I’ve ever received: Always tuck away a little "fun money."
4. The film I’ve watched again and again: Love Actually.
5. The song I want played at my funeral: Pass In Time - Beth Orton; Sweetest Decline - Beth Orton; Shake it Out - Florence and the Machine.
6. The scent that evokes pleasant memories: The soap my Grandma used to use - plain old Ivory, I think?
7. The piece of furniture that will become an heirloom: Does anyone want sharpie-covered Ikea crap? My favourite David Hockney painting from Saltaire, UK.
8. First job: *cringe*.... Fairweather (clothes) at Richmond Centre.
9. Favourite item in wardrobe: My Tiffany horseshoe necklace.
10. Pet peeve: Noise.
11. Greatest accomplishment: My kids.
12. The gadget that I can’t live without: Laptop, cell phone.
13. The item I’d save in a fire: (excluding people, of course) My boxes of mementos.
14. The characteristic I like most in myself: Being organized (!)
15. The characteristic I like least in myself: Impatience; bossiness.
16. The last time I cried: The ugly cry: While watching "When I Walk" at the Vancouver International Film Festival. The regular cry: Pretty much every day!
17. It was the best of times...: Moving overseas completely alone in 2001. It prepared me for everything else that came in life.
18. It was the worst of times...: When my step-Dad died in 2002. I didn't get to say goodbye.
When I was diagnosed with MS in 2012.
19. The person I call when things go pear-shaped: I am lucky to have lots of listening ears... But I'd probably start with my mom and sister.
20. My death row dinner: Turkey dinner. Extra stuffing, extra gravy. With lots of wine...
Lists and questions: two of my favourite things!
Here goes.
1. The book that changed my life: "The Alchemist" by Paulo Coelho.
2. The quote that keeps me sane: "This too shall pass."
3. The best advice I’ve ever received: Always tuck away a little "fun money."
4. The film I’ve watched again and again: Love Actually.
5. The song I want played at my funeral: Pass In Time - Beth Orton; Sweetest Decline - Beth Orton; Shake it Out - Florence and the Machine.
6. The scent that evokes pleasant memories: The soap my Grandma used to use - plain old Ivory, I think?
7. The piece of furniture that will become an heirloom: Does anyone want sharpie-covered Ikea crap? My favourite David Hockney painting from Saltaire, UK.
8. First job: *cringe*.... Fairweather (clothes) at Richmond Centre.
9. Favourite item in wardrobe: My Tiffany horseshoe necklace.
10. Pet peeve: Noise.
11. Greatest accomplishment: My kids.
12. The gadget that I can’t live without: Laptop, cell phone.
13. The item I’d save in a fire: (excluding people, of course) My boxes of mementos.
14. The characteristic I like most in myself: Being organized (!)
15. The characteristic I like least in myself: Impatience; bossiness.
16. The last time I cried: The ugly cry: While watching "When I Walk" at the Vancouver International Film Festival. The regular cry: Pretty much every day!
17. It was the best of times...: Moving overseas completely alone in 2001. It prepared me for everything else that came in life.
18. It was the worst of times...: When my step-Dad died in 2002. I didn't get to say goodbye.
When I was diagnosed with MS in 2012.
19. The person I call when things go pear-shaped: I am lucky to have lots of listening ears... But I'd probably start with my mom and sister.
20. My death row dinner: Turkey dinner. Extra stuffing, extra gravy. With lots of wine...
Sunday 27 October 2013
The kindness of a friend...
...strikes again.
And it never ceases to amaze me.
Melissa, who I have known for a long time, understands what MS is all about. She grew up with her Mom's MS.
She gets it.
Today, she filled my freezer. Just because she wanted to.
She is a genuinely thoughtful person, who never takes no for an answer.
Thank you, Melissa, for telling me to stuff it, stop making excuses, and just let you help me.
And it never ceases to amaze me.
Melissa, who I have known for a long time, understands what MS is all about. She grew up with her Mom's MS.
She gets it.
Today, she filled my freezer. Just because she wanted to.
She is a genuinely thoughtful person, who never takes no for an answer.
Thank you, Melissa, for telling me to stuff it, stop making excuses, and just let you help me.
Wednesday 23 October 2013
Blogging with wine
My first installment of blogging with wine is brought to you by Nk'Mip Cellars (not a sponsorship, of course; just my drinking it). A complex, fruity, dry pinot blanc, from the desert of Osoyoos. Delicious.
Moms-needing-to-drink, take note:
It's time to drink wine on a Wednesday night.
Ironically, or not, three years ago today I was cradling a brand new baby Oliver.
I remember waiting for my Mom to come watch Jack - cause, you know, I needed to go have a baby. She was out car shopping. And late.
I remember pacing the halls at the hospital, willing this kid to come out of me. Only ending up begging them to break my water and get things moving. But I did it; fast and drug-free, I may add.
Oliver is my miracle baby - who was never supposed to happen. After my hemorrhage and uterine artery embolization after Jack was born, I was left without blood flow to half of my uterus and was told I'd never have more children.
And then there were two...
(God help me).
So, to you, Oliver, I raise my pinot blanc, forget about how exhausted I am, and thank you for being my (generally) well behaved, fun, happy little man.
Happy birthday, baby!
Moms-needing-to-drink, take note:
It's time to drink wine on a Wednesday night.
Ironically, or not, three years ago today I was cradling a brand new baby Oliver.
I remember waiting for my Mom to come watch Jack - cause, you know, I needed to go have a baby. She was out car shopping. And late.
I remember pacing the halls at the hospital, willing this kid to come out of me. Only ending up begging them to break my water and get things moving. But I did it; fast and drug-free, I may add.
Oliver is my miracle baby - who was never supposed to happen. After my hemorrhage and uterine artery embolization after Jack was born, I was left without blood flow to half of my uterus and was told I'd never have more children.
And then there were two...
(God help me).
So, to you, Oliver, I raise my pinot blanc, forget about how exhausted I am, and thank you for being my (generally) well behaved, fun, happy little man.
Happy birthday, baby!
Thursday 17 October 2013
Laugh!
The moments of my day that make me laugh. The things that make me smile and secretly chuckle to myself - those are the moments that are worth a million bucks.
It still fazes me that I own two of these, in rotation. And buy them for $4 every month or so. It's as close to junkie as I'll ever feel. And the looks from the other customers in the pharmacy as I buy them are priceless...
And out of the mouths of babes... "Mommy, boys have penises and girls have vases." Said with complete and utter seriousness. This boy's going to have some lucky, lucky girlfriends...
The altered "chore chart" that mysteriously had $106 added to it.
Sometimes I forget how important laughing is. And how finding it in the teeny tiny everyday things makes it that much better.
Now go, laugh. Find something silly and enjoy it.
It still fazes me that I own two of these, in rotation. And buy them for $4 every month or so. It's as close to junkie as I'll ever feel. And the looks from the other customers in the pharmacy as I buy them are priceless...
And out of the mouths of babes... "Mommy, boys have penises and girls have vases." Said with complete and utter seriousness. This boy's going to have some lucky, lucky girlfriends...
The altered "chore chart" that mysteriously had $106 added to it.
Sometimes I forget how important laughing is. And how finding it in the teeny tiny everyday things makes it that much better.
Now go, laugh. Find something silly and enjoy it.
Tuesday 15 October 2013
Don't mess with the spinal cord...
Sometimes the appointments go fast.
And sometimes the appointments leave you with decisions. Choices.
Choices that will affect how this disease will take its course.
My leg still isn't feeling better after my falling-down-relapse last month. But, the relapse itself is done. What I can feel now is residual damage. Damage that will probably stay. Each relapse I have adds a new layer to this mess we call MS - and that's how new symptoms become permanent ones I live with every day.
And like clockwork, that becomes my new normal. Re-adjust and move on.
I've mentioned before that most of my relapses are caused by the large lesion in my upper spinal cord. That hasn't changed.
Those frequent occurrences plus the permanent damage from my relapses, means it's time to get tougher.
My Neurologist's approach is one of "zero relapse tolerance." When dealing with large spinal cord lesions, if you have repeat relapses on a certain drug, it's time to get off it, and try something else.
You don't mess with the spinal cord.
I've tried two drugs so far.
We are going to give my current medication another six months and another MRI - and if there are more relapses, new symptoms, or any changes to my MRI, we switch again.
We move onto a second line therapy drug. Right now - there is only one option that fits for me. It's a pill, which is nice, but it scares me. It's called Gilenya.
My Neurologist, who takes a very aggressive approach toward treating MS, understands my concerns, but replied with "Well, you need to decide... are you more concerned about your disease progression or about the drug?"
I already know the answer to that. Always have. I tend to take an aggressive attitude toward this too. But switching to something with more complications, risks, and potential damage really terrifies me. Then again - waking up tomorrow and not being able to walk probably scares me more.
And sometimes the appointments leave you with decisions. Choices.
Choices that will affect how this disease will take its course.
My leg still isn't feeling better after my falling-down-relapse last month. But, the relapse itself is done. What I can feel now is residual damage. Damage that will probably stay. Each relapse I have adds a new layer to this mess we call MS - and that's how new symptoms become permanent ones I live with every day.
And like clockwork, that becomes my new normal. Re-adjust and move on.
I've mentioned before that most of my relapses are caused by the large lesion in my upper spinal cord. That hasn't changed.
Those frequent occurrences plus the permanent damage from my relapses, means it's time to get tougher.
My Neurologist's approach is one of "zero relapse tolerance." When dealing with large spinal cord lesions, if you have repeat relapses on a certain drug, it's time to get off it, and try something else.
You don't mess with the spinal cord.
I've tried two drugs so far.
We are going to give my current medication another six months and another MRI - and if there are more relapses, new symptoms, or any changes to my MRI, we switch again.
We move onto a second line therapy drug. Right now - there is only one option that fits for me. It's a pill, which is nice, but it scares me. It's called Gilenya.
My Neurologist, who takes a very aggressive approach toward treating MS, understands my concerns, but replied with "Well, you need to decide... are you more concerned about your disease progression or about the drug?"
I already know the answer to that. Always have. I tend to take an aggressive attitude toward this too. But switching to something with more complications, risks, and potential damage really terrifies me. Then again - waking up tomorrow and not being able to walk probably scares me more.
Monday 14 October 2013
Thankful
I do feel thankful this year - I think I always will.
For the important, the mundane, and the silly things in life.
I am thankful for my boys (exasperation included) and my family. I am thankful they are healthy, full of adventure, and happy. And I am thankful there isn't quite as much pee on the toilet seat as there used to be...
I am also thankful for when I get to sleep in. Or nap.
I am thankful for my friends. For laughs, company, and grown-up conversation.
I am thankful for good food; wine; lipstick; a nice new pair of slippers.
I am thankful for our healthcare system, my wonderful doctors and nurses, and my $30,000 worth of medication - all for free.
I am thankful for good books, good TV, and amusing, junky social media.
I am thankful for being able to focus on my kids and my health - without the added stress of work and commuting. I am lucky we can afford to do this.
All things considered, I'm a pretty fortunate gal.
Happy Thanksgiving everyone!
For the important, the mundane, and the silly things in life.
I am thankful for my boys (exasperation included) and my family. I am thankful they are healthy, full of adventure, and happy. And I am thankful there isn't quite as much pee on the toilet seat as there used to be...
I am also thankful for when I get to sleep in. Or nap.
I am thankful for my friends. For laughs, company, and grown-up conversation.
I am thankful for good food; wine; lipstick; a nice new pair of slippers.
I am thankful for our healthcare system, my wonderful doctors and nurses, and my $30,000 worth of medication - all for free.
I am thankful for good books, good TV, and amusing, junky social media.
I am thankful for being able to focus on my kids and my health - without the added stress of work and commuting. I am lucky we can afford to do this.
All things considered, I'm a pretty fortunate gal.
Happy Thanksgiving everyone!
Thursday 10 October 2013
Overwhelmed
Sure, we all have issues. Problems. Annoyances.
It feels like mine have been multiplying lately. The word grumpy was even used to describe me yesterday (which I fully agree with).
And I admit it - I feel like life is eating me whole; and winning the Sarah-buffet.
Being 100% responsible for getting two whiny, stubborn kids out the door, getting them to and from school and activities. Entertaining the little one while big brother is at school. Cooking, cleaning, driving, organizing, scheduling. It's exhausting.
I kind of miss working.
Right now: It's 4:15.... We've been home from school for a bit - bags are unpacked, snacks have been had, now the craziness ensues. Oliver already has no pants on; Jack is in the corner practicing his dog calls, or something else humans shouldn't be able to hear...
The are vying for my attention... "look, look, Mommy look, Mommy, MOMMY, MOMMY, MOMMY I SAID LOOK AT ME NOW!"
And it's time to cook dinner...
For me, now we add the MS.... So, basically, more crippling exhaustion, the prolonged symptoms of right side weakness and loss of coordination, nervous system shenanigans, and crazy eye-stuff. Plus making time for injections each night (I won't hide my excitement that it sometimes gets me out of bedtime duty).
I know I am not the only person - and far from it - who feels like this. I know Moms feels like this, and some Dads too, but seriously - I feel like there's been some crap chucked this way that I could really do without.
And my dentist wonders why I grind my teeth.
Phew - rant over...
So my question to you is this: How can I get better in control of my life. How does one make time to breathe?
It feels like mine have been multiplying lately. The word grumpy was even used to describe me yesterday (which I fully agree with).
And I admit it - I feel like life is eating me whole; and winning the Sarah-buffet.
Being 100% responsible for getting two whiny, stubborn kids out the door, getting them to and from school and activities. Entertaining the little one while big brother is at school. Cooking, cleaning, driving, organizing, scheduling. It's exhausting.
I kind of miss working.
Right now: It's 4:15.... We've been home from school for a bit - bags are unpacked, snacks have been had, now the craziness ensues. Oliver already has no pants on; Jack is in the corner practicing his dog calls, or something else humans shouldn't be able to hear...
The are vying for my attention... "look, look, Mommy look, Mommy, MOMMY, MOMMY, MOMMY I SAID LOOK AT ME NOW!"
And it's time to cook dinner...
For me, now we add the MS.... So, basically, more crippling exhaustion, the prolonged symptoms of right side weakness and loss of coordination, nervous system shenanigans, and crazy eye-stuff. Plus making time for injections each night (I won't hide my excitement that it sometimes gets me out of bedtime duty).
I know I am not the only person - and far from it - who feels like this. I know Moms feels like this, and some Dads too, but seriously - I feel like there's been some crap chucked this way that I could really do without.
And my dentist wonders why I grind my teeth.
Phew - rant over...
So my question to you is this: How can I get better in control of my life. How does one make time to breathe?
Wednesday 2 October 2013
MS prevalence
This is the data collected by the Multiple Sclerosis International Federation. This graphic shows the worldwide prevalence of MS.
Notice Canada.
And notice the higher prevalence in northern European countries.
Typically, and historically (although immigration is now confusing this theory), MS affects those from northern latitudes, and those with genetic connections in certain northern climates. The theory behind this is the correlation between MS and vitamin D (the sunshine vitamin) deficiency. Although only a pin prick in the maze of what actually causes MS, this map shows the importance of considering vitamin D and sunlight exposure...
----
And, just to pack in a laugh... thank you to Jack's friend who has lent us this...
We are now a remote-control-fart household. The fun; the fun.
Saturday 28 September 2013
When I Walk
You know when there are so many thoughts bumping around in your head, and you just don't know where to start.
That's me, tonight.
When I Walk was more than I imagined. More than I expected.
A filmmaking journey that took over 7 years to complete. The story of Jason DaSilva's life with primary progressive MS is poignant, terrifying, yet uplifting and filled with love. A story of courage and perseverance better than any I've seen before.
DaSilva conquers the topics of religion, life, and death, yet peppers the story with humility and humour.
My modified-ugly-cry appeared a few times; the waterproof mascara served me well. This story, and this man, will stay with me forever.
I am in awe of the charismatic Jason DaSilva, and am so honoured to have met him.
Tuesday 24 September 2013
The art of re-thinking (and waiting...)
Also known as MS F*$!ing sucks.
I called the MS clinic today to talk with the nurse about my current buzzing, weakness, and imbalance. The crawling sensation on my face has started again too.
My instructions: to watch myself for a couple days, then we'll chat again. Using steroids isn't always effective in curbing a relapse - especially if the symptoms have been around for a while, or are pre-existing. My leg has felt off for a few weeks now, but it only really started interrupting life yesterday. Maybe it will pass, maybe it won't.
The biggest decision made today? It's time to re-evaluate my treatment plan. Relapse after relapse, symptoms, symptoms, and new symptoms. I'll meet with my Neurologist in a few weeks to decide what to do now. New, stronger, medication? Probably...
Tick. Tock. Waiting for this time-bomb body of mine is the hardest exercise in patience. And sanity.
I called the MS clinic today to talk with the nurse about my current buzzing, weakness, and imbalance. The crawling sensation on my face has started again too.
My instructions: to watch myself for a couple days, then we'll chat again. Using steroids isn't always effective in curbing a relapse - especially if the symptoms have been around for a while, or are pre-existing. My leg has felt off for a few weeks now, but it only really started interrupting life yesterday. Maybe it will pass, maybe it won't.
The biggest decision made today? It's time to re-evaluate my treatment plan. Relapse after relapse, symptoms, symptoms, and new symptoms. I'll meet with my Neurologist in a few weeks to decide what to do now. New, stronger, medication? Probably...
Tick. Tock. Waiting for this time-bomb body of mine is the hardest exercise in patience. And sanity.
Monday 23 September 2013
Today was the first time...
I lost my balance, and fell backwards.
I was sorting and hanging clothes in the boys' closet, and just lost complete control. I fell backwards (thank you, giant stuffed truck from the PNE, for breaking my fall).
I've felt the "drunk" feelings of MS before - weaving a bit while walking, not being able to balance well on one foot. Today was the first actual fall.
I find these moments come right when I am not thinking about MS; when I am just being a busy Mom, trying to get these rug-rats clean and laundered.
It was definitely one of those oh my God moments.
But I can tell when the MS is starting to engage in my body. My leg and arm get weaker, my eye gets a bit fuzzy. It could be stress, it could just be the disease course. I don't know.
Either way, I can now read this body of mine like a book. I can tell when symptoms are going to start, and when they are going to progress to something new.
Fingers crossed... no more falling or balance issues.
Deep breaths (and hopefully lots of sleep) for now...
I was sorting and hanging clothes in the boys' closet, and just lost complete control. I fell backwards (thank you, giant stuffed truck from the PNE, for breaking my fall).
I've felt the "drunk" feelings of MS before - weaving a bit while walking, not being able to balance well on one foot. Today was the first actual fall.
I find these moments come right when I am not thinking about MS; when I am just being a busy Mom, trying to get these rug-rats clean and laundered.
It was definitely one of those oh my God moments.
But I can tell when the MS is starting to engage in my body. My leg and arm get weaker, my eye gets a bit fuzzy. It could be stress, it could just be the disease course. I don't know.
Either way, I can now read this body of mine like a book. I can tell when symptoms are going to start, and when they are going to progress to something new.
Fingers crossed... no more falling or balance issues.
Deep breaths (and hopefully lots of sleep) for now...
Wednesday 18 September 2013
Thirty-four
Today I am 34.
That number seems fairly young, but holy smokes, I feel about 50. It's amazing how emotional upheaval ages both the body and mind.
My goal for today: to bring that mental age down a few notches.
I love this time of year - fall is starting, colours are changing, the weather is crisp and comforting. I find I can stop - even just for a moment - and be more mindful. It's ok to sit inside, curled up with a book (and some wine) - with no judgement. Life slows down just a little.
And I like that.
To me, my birthday signifies the start of this seasonal change.
And like clockwork, this process usually begins with the planting of some heuchera, my favourite fall plant. I love the deep, rich colours and leafiness of this plant. It screams get out your sweaters, it's getting cold. It even looks healthy, right? A salad for your eyes...
Birthdays are also a great reminder of the people, friendship, and love in our lives. I am so in awe of the people I get to call my friends and my family. Thank you for helping me celebrate this day by putting a great big smile on my face...
That number seems fairly young, but holy smokes, I feel about 50. It's amazing how emotional upheaval ages both the body and mind.
My goal for today: to bring that mental age down a few notches.
I love this time of year - fall is starting, colours are changing, the weather is crisp and comforting. I find I can stop - even just for a moment - and be more mindful. It's ok to sit inside, curled up with a book (and some wine) - with no judgement. Life slows down just a little.
And I like that.
To me, my birthday signifies the start of this seasonal change.
And like clockwork, this process usually begins with the planting of some heuchera, my favourite fall plant. I love the deep, rich colours and leafiness of this plant. It screams get out your sweaters, it's getting cold. It even looks healthy, right? A salad for your eyes...
Birthdays are also a great reminder of the people, friendship, and love in our lives. I am so in awe of the people I get to call my friends and my family. Thank you for helping me celebrate this day by putting a great big smile on my face...
Thursday 12 September 2013
VIFF
The Vancouver International Film Festival starts soon, and I am so, so excited that When I Walk, a film by Jason DaSilva, will be featured.
If you haven't heard me ramble on about this, watch the trailer here.
And if you want to join me, I am going to the September 28th showing - the more the merrier!
http://www.viff.org/festival/films/f7250-when-i-walk
This man is amazing - spread the love to him and show some support for MS!
If you haven't heard me ramble on about this, watch the trailer here.
And if you want to join me, I am going to the September 28th showing - the more the merrier!
http://www.viff.org/festival/films/f7250-when-i-walk
This man is amazing - spread the love to him and show some support for MS!
Wednesday 11 September 2013
Keep s'myelin
My soapbox beckons...
Children's MS resources are seriously lacking. To the point I don't want to show them to my kids. The ones available don't show how individual and changeable MS is. That not everyone needs constant help to walk, or talk or eat. As a parent, there is no way I can give my six year old a book about a Mom with MS who has to use a wheelchair. I can't. And I won't.
Unless it is my, and his, reality, it is only going to provoke (more) worry and confusion.
I finally found this online resource provided by the National MS Society in the US, and although still not fully appropriate for my family, I love that I can pick and choose what I want my kids to see. At least at this stage in their development.
----
And speaking of kids, I am feeling pretty proud of my two rascals. Grade 1 and preschool have started with a bang, and I am in awe of these guys:
Children's MS resources are seriously lacking. To the point I don't want to show them to my kids. The ones available don't show how individual and changeable MS is. That not everyone needs constant help to walk, or talk or eat. As a parent, there is no way I can give my six year old a book about a Mom with MS who has to use a wheelchair. I can't. And I won't.
Unless it is my, and his, reality, it is only going to provoke (more) worry and confusion.
I finally found this online resource provided by the National MS Society in the US, and although still not fully appropriate for my family, I love that I can pick and choose what I want my kids to see. At least at this stage in their development.
----
And speaking of kids, I am feeling pretty proud of my two rascals. Grade 1 and preschool have started with a bang, and I am in awe of these guys:
Tuesday 3 September 2013
Imaging
Over a year of blogging about MS, and I just realized I have never actually shown what MS looks like.
How it is imaged, assessed, and diagnosed.
Most neurologists (although not the first one I saw five years ago - she simply brushed me off and asked if I was "stressed") start with an MRI - of the brain and spinal cord.
I am far too thrifty to pay for each and every image I've had (they'd just become another reminder hanging around, shoved in a drawer somewhere. I like to think my mental health is thanking me), so here are some examples of how MS has presented itself in me.
I have 15 (or so) brain lesions and 1 large transverse spinal cord lesion.
How it is imaged, assessed, and diagnosed.
Most neurologists (although not the first one I saw five years ago - she simply brushed me off and asked if I was "stressed") start with an MRI - of the brain and spinal cord.
I am far too thrifty to pay for each and every image I've had (they'd just become another reminder hanging around, shoved in a drawer somewhere. I like to think my mental health is thanking me), so here are some examples of how MS has presented itself in me.
I have 15 (or so) brain lesions and 1 large transverse spinal cord lesion.
Wednesday 28 August 2013
Sleep
Remember that episode of Seinfeld with the "Jimmy legs?"
I feel like that - but in an all-over sense.
Sleep has not been coming easy. My hands are twitching, my nerves are jumping, my skin still has that crawling sensation.
MS and sleep problems seem to go hand in hand. From neuronal damage, increasing MS symptoms, mood changes, heat intolerance.
And ironically, the debilitating MS fatigue is always present, yet so is the sleeplessness. Lose-lose.
Hard to be fresh-faced and ready for a day with the ruffians.
I've been told it shouldn't take longer than 30 minutes to fall asleep. MS or not, that has never happened. Ever. I am a terrible sleeper - everything needs to be just right; perfect.
Apparently doing something active (I would usually go the passive TV route) is good, as it can help increase levels of exhaustion. But wait... There are levels of exhaustion? It can get worse?
Cause at this point I would hand over a crisp $100 bill to the sleep fairy if she came right now.
I hope blogging about sleep, or lack thereof, at 12:30 in the morning will do the trick.
And back to the Jimmy legs...
I feel like that - but in an all-over sense.
Sleep has not been coming easy. My hands are twitching, my nerves are jumping, my skin still has that crawling sensation.
MS and sleep problems seem to go hand in hand. From neuronal damage, increasing MS symptoms, mood changes, heat intolerance.
And ironically, the debilitating MS fatigue is always present, yet so is the sleeplessness. Lose-lose.
Hard to be fresh-faced and ready for a day with the ruffians.
I've been told it shouldn't take longer than 30 minutes to fall asleep. MS or not, that has never happened. Ever. I am a terrible sleeper - everything needs to be just right; perfect.
Apparently doing something active (I would usually go the passive TV route) is good, as it can help increase levels of exhaustion. But wait... There are levels of exhaustion? It can get worse?
Cause at this point I would hand over a crisp $100 bill to the sleep fairy if she came right now.
I hope blogging about sleep, or lack thereof, at 12:30 in the morning will do the trick.
And back to the Jimmy legs...
Wednesday 21 August 2013
MS-iversary
One year passes very quickly.
It feels like the fastest year of my life, yet in the same breath, like I've aged 20 years.
One year ago, almost to the moment I am writing this, my world changed.
The rest of my life changed.
I walked into that Neurologist's office, expecting my brain MRI to be normal; that my symptoms would continue to be undiagnosed. Then that fateful moment happened. Alone, I sat in the examining room, with the MRI images already up on the computer monitor. I saw the images. And I knew. I knew without a doubt.
And here we are, a year later. Some days I still can't fully explain how all this feels. Whether I am still saddened by it, or have passed fully into acceptance. Or maybe my real fight has yet to come.
It has been a battle like none I have experienced before. Yet, it has also been an incredible journey of self discovery and increased self awareness.
So, today, I will enjoy the last few days of holidays with my family.
I'm still fighting, MS...
It feels like the fastest year of my life, yet in the same breath, like I've aged 20 years.
One year ago, almost to the moment I am writing this, my world changed.
The rest of my life changed.
I walked into that Neurologist's office, expecting my brain MRI to be normal; that my symptoms would continue to be undiagnosed. Then that fateful moment happened. Alone, I sat in the examining room, with the MRI images already up on the computer monitor. I saw the images. And I knew. I knew without a doubt.
And here we are, a year later. Some days I still can't fully explain how all this feels. Whether I am still saddened by it, or have passed fully into acceptance. Or maybe my real fight has yet to come.
It has been a battle like none I have experienced before. Yet, it has also been an incredible journey of self discovery and increased self awareness.
So, today, I will enjoy the last few days of holidays with my family.
I'm still fighting, MS...
Thursday 15 August 2013
"Mommy, what does MS feel like?"
Today I learned my 6 year old knows more than I thought.
That question came out of nowhere.
It was followed by this heart-wrenching statement:
"I want your MS to go away. I worry about you."
Then the questions came - fast. Can I make my MS go away? Why do I have it? Will he get it too? Will the shots I do everyday cure my MS?
That's a lot for a 6 year old to ask, and a lot for a mother to answer. And it's hard to sugar coat it.
We talked about how MS affects everyone in different ways, and we talked about how it has affected me so far. He wanted to see pictures of what MS looks like on a brain, so we looked at some images together.
It was a sad conversation to have with such a small, innocent little guy. His worry for me - for my health - breaks my heart.
But I am amazed by his knowledge, interest and genuine concern.
Our chat finished with him telling me it was so important for us to do the MS Walk every year, as that will "help the doctors raise money and make Mommy healthy."
Those 5 minutes of my life - I will never, ever forget.
That question came out of nowhere.
It was followed by this heart-wrenching statement:
"I want your MS to go away. I worry about you."
Then the questions came - fast. Can I make my MS go away? Why do I have it? Will he get it too? Will the shots I do everyday cure my MS?
That's a lot for a 6 year old to ask, and a lot for a mother to answer. And it's hard to sugar coat it.
We talked about how MS affects everyone in different ways, and we talked about how it has affected me so far. He wanted to see pictures of what MS looks like on a brain, so we looked at some images together.
It was a sad conversation to have with such a small, innocent little guy. His worry for me - for my health - breaks my heart.
But I am amazed by his knowledge, interest and genuine concern.
Our chat finished with him telling me it was so important for us to do the MS Walk every year, as that will "help the doctors raise money and make Mommy healthy."
Those 5 minutes of my life - I will never, ever forget.
Wednesday 7 August 2013
MRI update
My big spinal cord lesion, which is a transverse lesion, at C4, has increased in size a small amount. This is since my last cervical spinal cord MRI last October.
The lesion is classified as "high intensity," in imaging terms.
As for what this means for me, right now - not much. But I think it does prove, as expected, that most of my current disease activity is spinal cord related.
Treatment will continue as normal.
Tomorrow I meet with my Neuro-Ophthalmologist to check my right eye. It's been over a year since the acute optic neuritis, and although most of my vision is back, it has never returned to normal. Vision, some colour perception, and peripheral acuity are all still very much affected.
Upwards and onwards..... I guess.
The lesion is classified as "high intensity," in imaging terms.
As for what this means for me, right now - not much. But I think it does prove, as expected, that most of my current disease activity is spinal cord related.
Treatment will continue as normal.
Tomorrow I meet with my Neuro-Ophthalmologist to check my right eye. It's been over a year since the acute optic neuritis, and although most of my vision is back, it has never returned to normal. Vision, some colour perception, and peripheral acuity are all still very much affected.
Upwards and onwards..... I guess.
Friday 2 August 2013
Emotional ebb and flow
It's hard not to be melancholy right now. Sad even.
Despite expelling every ounce of energy into being positive about my MS, as we approach the anniversary of my diagnosis, it seems to be hitting me harder than I expected.
I thought I'd be feeling proud of myself - for the fundraising and awareness I have worked so hard on. For my personal efforts to not let this disease consume me.
But right now - it feels very all-consuming.
Simply going through the motions becomes exhausting.
But, with any disease, the emotions vary so much - each day becomes the unexpected. And the unexpected becomes the confusing.
Today, I can't help but reflect on the past year. It's been a whirl of activity and appointments and upsetting news.
Perhaps tomorrow will be different. I'll blame the rain.
What a game this is.
Despite expelling every ounce of energy into being positive about my MS, as we approach the anniversary of my diagnosis, it seems to be hitting me harder than I expected.
I thought I'd be feeling proud of myself - for the fundraising and awareness I have worked so hard on. For my personal efforts to not let this disease consume me.
But right now - it feels very all-consuming.
Simply going through the motions becomes exhausting.
But, with any disease, the emotions vary so much - each day becomes the unexpected. And the unexpected becomes the confusing.
Today, I can't help but reflect on the past year. It's been a whirl of activity and appointments and upsetting news.
Perhaps tomorrow will be different. I'll blame the rain.
What a game this is.
Tuesday 30 July 2013
When life's a beach...
You forget about all the bad things.
The things you need to do; need to remember.
You forget about all the doctors appointments, the tests, the injections, the pills. And what it all means.
You stop making lists and just let life soak right in.
For 5 (short) days, I forgot about my MS. I didn't once think about what my future holds. Whether 10 years from now I'll be able to make this same trip or not. For 5 days I felt healthy, alive, and worry-free. Probably the most I have been this past year.
I marvelled in watching my boys play in the water and sand. I felt like I was watching them grow-up. A lakeside rite of passage, if you will.
Air-dried hair and no make-up is fantastic (for a while).
A recharge was exactly what was needed.
And what better place to do those awful injections...
The things you need to do; need to remember.
You forget about all the doctors appointments, the tests, the injections, the pills. And what it all means.
You stop making lists and just let life soak right in.
For 5 (short) days, I forgot about my MS. I didn't once think about what my future holds. Whether 10 years from now I'll be able to make this same trip or not. For 5 days I felt healthy, alive, and worry-free. Probably the most I have been this past year.
I marvelled in watching my boys play in the water and sand. I felt like I was watching them grow-up. A lakeside rite of passage, if you will.
Air-dried hair and no make-up is fantastic (for a while).
A recharge was exactly what was needed.
And what better place to do those awful injections...
Tuesday 23 July 2013
Childhood
This is my happy place.
I envision sitting out on the dock whenever I need to relax and take in a few breaths of calm. Listening to the sound of the waves lapping against the shore.
It's where I spent every summer growing up.
And now, for the first time, I will bring my kids here. It's an odd feeling being the adult now and not the child. Not the teen escaping from her parents or day-dreaming about her grown-up life. Now I'm the Mom, with much bigger fish to fry.
It's kind of emotional going back.
I hope (after 6 hours in the car - each way - with the boys) it remains in such high standing.
I'll be back in a week!
I envision sitting out on the dock whenever I need to relax and take in a few breaths of calm. Listening to the sound of the waves lapping against the shore.
It's where I spent every summer growing up.
And now, for the first time, I will bring my kids here. It's an odd feeling being the adult now and not the child. Not the teen escaping from her parents or day-dreaming about her grown-up life. Now I'm the Mom, with much bigger fish to fry.
It's kind of emotional going back.
I hope (after 6 hours in the car - each way - with the boys) it remains in such high standing.
I'll be back in a week!
Friday 19 July 2013
Candid disclosure
This is less post-like and more collective-rambling-of-thoughts.
Today I am thankful for MRI cancellation lists. My repeat spinal cord MRI appointment has been bumped up to this Monday! I am especially thankful that my Neurologist's hand written request on the referral seems to have worked.
I can feel that my spinal cord symptoms are the ones acting up lately, so getting this report will ease my scrutinizing personality.
I also want to acknowledge that I've been a cynical bitch lately. Unless you too have MS, or a variant of it, you can't truly understand this. I now know I don't like comparisons between people and situations. It does not help. If you've been a victim of this cynicism - sorry, it's nothing personal.
My facial symptoms are gone for now, and what I can physically feel is my usual numbness and weakness in my extremities. I notice I drop things; am more clumsy than before; need to be weary of which foot or which hand does what. It's the little things I never would have thought about - like buying flats to wear to a wedding because I can no longer do heels - safely or gracefully.
And although not great, I am thankful for these little things. Because, despite them, I can walk, I can speak, and unlike this time last year, I can see.
And, more so than ever, I am amazed at what the human spirit can do. Cliché aside, It feels like all the work - and this has been hard work - to get to the mental space I am in right now has finally been worth it.
Lots of this 'work' I haven't spoken much about before. Partially because dealing with the stigma of having MS can be enough in itself, but also because, as a society, the subject of mental health doesn't usually garnish a second's attention.
But it should.
I credit my growing acceptance of MS to re-working my thoughts and my reactions; to learning more about the biology and physiology of what is happening to me.
To weekly therapy.
To monthly MS support group meetings.
To the use of anti-depressants and anti-anxiety medication.
Because really - when you already have issues with anxiety and stress, how could this diagnosis not make it worse? Diet, meditation, medication and relaxation have become important parts of my daily life - as best I can. MS and non-MS.
I can't just sit here, snap my fingers, pop some pills, and hope to feel happy. I need to create that for myself.
Finally, I don't feel consumed by every new twitch, tingle or misguided sensation.
At least for now. And that's all I can ask for.
Today I am thankful for MRI cancellation lists. My repeat spinal cord MRI appointment has been bumped up to this Monday! I am especially thankful that my Neurologist's hand written request on the referral seems to have worked.
I can feel that my spinal cord symptoms are the ones acting up lately, so getting this report will ease my scrutinizing personality.
I also want to acknowledge that I've been a cynical bitch lately. Unless you too have MS, or a variant of it, you can't truly understand this. I now know I don't like comparisons between people and situations. It does not help. If you've been a victim of this cynicism - sorry, it's nothing personal.
My facial symptoms are gone for now, and what I can physically feel is my usual numbness and weakness in my extremities. I notice I drop things; am more clumsy than before; need to be weary of which foot or which hand does what. It's the little things I never would have thought about - like buying flats to wear to a wedding because I can no longer do heels - safely or gracefully.
And although not great, I am thankful for these little things. Because, despite them, I can walk, I can speak, and unlike this time last year, I can see.
And, more so than ever, I am amazed at what the human spirit can do. Cliché aside, It feels like all the work - and this has been hard work - to get to the mental space I am in right now has finally been worth it.
Lots of this 'work' I haven't spoken much about before. Partially because dealing with the stigma of having MS can be enough in itself, but also because, as a society, the subject of mental health doesn't usually garnish a second's attention.
But it should.
I credit my growing acceptance of MS to re-working my thoughts and my reactions; to learning more about the biology and physiology of what is happening to me.
To weekly therapy.
To monthly MS support group meetings.
To the use of anti-depressants and anti-anxiety medication.
Because really - when you already have issues with anxiety and stress, how could this diagnosis not make it worse? Diet, meditation, medication and relaxation have become important parts of my daily life - as best I can. MS and non-MS.
I can't just sit here, snap my fingers, pop some pills, and hope to feel happy. I need to create that for myself.
Finally, I don't feel consumed by every new twitch, tingle or misguided sensation.
At least for now. And that's all I can ask for.
Friday 12 July 2013
Six
Of all the things that define me - name me - motherhood is perhaps the greatest one.
The most important, the most all-involving, the most put-your-heart-out-there-and-hold-on-tight.
I became a Mom exactly 6 years ago. At 2:31 am to be exact.
And since then, every breath is different, every thought takes just that extra second to produce.
Not because it's work, but because these little beings that come into your life actually become your life. I feel their happiness, sadness and achievements as if they were my own. And I love that.
Today, as my oldest says good bye to everything baby, everything toddler, everything kindergartner, I am going to try not to close my eyes. For it all passes way too fast.
Happy birthday to my amazing, very busy, boy Jack.
The most important, the most all-involving, the most put-your-heart-out-there-and-hold-on-tight.
I became a Mom exactly 6 years ago. At 2:31 am to be exact.
And since then, every breath is different, every thought takes just that extra second to produce.
Not because it's work, but because these little beings that come into your life actually become your life. I feel their happiness, sadness and achievements as if they were my own. And I love that.
Today, as my oldest says good bye to everything baby, everything toddler, everything kindergartner, I am going to try not to close my eyes. For it all passes way too fast.
Happy birthday to my amazing, very busy, boy Jack.
(that's him, age 2, swinging Jack-style)
Wednesday 10 July 2013
Something new...
I've developed a new symptom over the past day or two. I noticed it first on my feet, and now it's my nose and right side of my face.
It feels like my skin is crawling. Like a colony of ants is marking its territory.
It doesn't necessarily hurt, but there is a pressure-like feeling on my skin that has me grabbing and rubbing these imaginary creatures away.
So, if you see me tapping the side of my nose, there isn't any hush-hush-criminal-activity going on. It's just these pesky nerves of mine...
Sigh...
It feels like my skin is crawling. Like a colony of ants is marking its territory.
It doesn't necessarily hurt, but there is a pressure-like feeling on my skin that has me grabbing and rubbing these imaginary creatures away.
So, if you see me tapping the side of my nose, there isn't any hush-hush-criminal-activity going on. It's just these pesky nerves of mine...
Sigh...
Friday 5 July 2013
Living the life?
So far, I like taking Copaxone. Mostly in the sense that it doesn't make me feel quite as crappy as the Rebif did. It works with my body, and generally, so far so good. No night shakes at 2am, no constant flu-achiness.
But - I very much dislike the frequent mailings I receive preaching how a person with MS should spend their time. Of course, I realize that many people with MS have symptoms, and daily life, much worse than I do. But I also realize that Copaxone is considered a "first line therapy" for MS - meaning that you try it first, usually soon after diagnosis, as something to start with. People who have progressed to secondary progressive MS do not take this medication.
I am still relatively young (barely hitting my mid-thirties) and have two young kids... am I supposed to call it a day and pack up life?
Yet, apparently, this is how I should be spending my summer:
I find this very condescending - even insulting. And I think it goes back to the issue of not feeling "sick." Right now I want to spend my time playing with my kids, enjoying life, and attempting to get back to my adventurous earlier years (of course focusing on the adrenaline-esque activities and not the "let's see how much cheap strawberry wine we can drink" years).
A good pair of binoculars is definitely not on my to-buy list.
But - I very much dislike the frequent mailings I receive preaching how a person with MS should spend their time. Of course, I realize that many people with MS have symptoms, and daily life, much worse than I do. But I also realize that Copaxone is considered a "first line therapy" for MS - meaning that you try it first, usually soon after diagnosis, as something to start with. People who have progressed to secondary progressive MS do not take this medication.
I am still relatively young (barely hitting my mid-thirties) and have two young kids... am I supposed to call it a day and pack up life?
Yet, apparently, this is how I should be spending my summer:
I find this very condescending - even insulting. And I think it goes back to the issue of not feeling "sick." Right now I want to spend my time playing with my kids, enjoying life, and attempting to get back to my adventurous earlier years (of course focusing on the adrenaline-esque activities and not the "let's see how much cheap strawberry wine we can drink" years).
A good pair of binoculars is definitely not on my to-buy list.
Wednesday 3 July 2013
Injection
Some people are curious. Some have asked. So here goes.
Nearing almost 200 self-injections since October, I am ready to share.
This is a manual Copaxone injection. It happens daily - in rotating locations around my body. Tonight it's my stomach area.
I am not sharing this for praise or applause. Despite how scared I was to start - it's normal now. And I am okay with that.
I am baring my two-babies-wide tummy for those who are struggling with medication choices; for those who think they can't; for those who are scared. You can do this. You are strong. And soon, for you too, this routine will become a boring old habit.
Nearing almost 200 self-injections since October, I am ready to share.
This is a manual Copaxone injection. It happens daily - in rotating locations around my body. Tonight it's my stomach area.
I am not sharing this for praise or applause. Despite how scared I was to start - it's normal now. And I am okay with that.
I am baring my two-babies-wide tummy for those who are struggling with medication choices; for those who think they can't; for those who are scared. You can do this. You are strong. And soon, for you too, this routine will become a boring old habit.
Monday 1 July 2013
Heat wave
I have never been so sweaty in my life.
That's right - in Burnaby B.C. - it feels like 38 degrees.
But it's not an enjoyable heat. It's a slicked-with-sweat kind of heat. A state of perma-frizziness. Our townhouse soaks up the heat. Bottles us in like we are baking.
Heat and MS do not go well together. Why?
Heat can produce a temporary worsening of symptoms but usually does not cause more disease activity (demyelination of the nerves themselves). Heat intolerance is most commonly seen as decreased cognitive function, numbness in the extremities, fatigue, blurred vision and weakness.
This is caused by a rise in body temperature. Damaged nerve cells (the lesions in my brain and spinal cord) are much less efficient when the body’s core temperature rises, and functions or sensations associated with those damaged nerve cells will appear worse.
The immune system also becomes more active in any situation when there is a rise in body temperature. This can manifest a situation where white blood cells are produced to fight an enemy within one's body. With MS, unfortunately, there are no infections to fight - and these chemical reactions destroy healthy tissue instead.
So yes - this means my hair will be wet and frizzy until it cools down. I will have ice packs all over my body. And I am *this close* to sitting topless right in front of our portable air conditioner.
For those who love the heat, enjoy!
That's right - in Burnaby B.C. - it feels like 38 degrees.
But it's not an enjoyable heat. It's a slicked-with-sweat kind of heat. A state of perma-frizziness. Our townhouse soaks up the heat. Bottles us in like we are baking.
Heat and MS do not go well together. Why?
Heat can produce a temporary worsening of symptoms but usually does not cause more disease activity (demyelination of the nerves themselves). Heat intolerance is most commonly seen as decreased cognitive function, numbness in the extremities, fatigue, blurred vision and weakness.
This is caused by a rise in body temperature. Damaged nerve cells (the lesions in my brain and spinal cord) are much less efficient when the body’s core temperature rises, and functions or sensations associated with those damaged nerve cells will appear worse.
The immune system also becomes more active in any situation when there is a rise in body temperature. This can manifest a situation where white blood cells are produced to fight an enemy within one's body. With MS, unfortunately, there are no infections to fight - and these chemical reactions destroy healthy tissue instead.
So yes - this means my hair will be wet and frizzy until it cools down. I will have ice packs all over my body. And I am *this close* to sitting topless right in front of our portable air conditioner.
For those who love the heat, enjoy!
Thursday 27 June 2013
School's out for summer!
This little face just finished Kindergarten.
He has his first wiggly tooth.
He has learned and excelled so much this year.
He is coming into his own. He's got a little personality, likes and dislikes. He loves Lego and superheroes, talking non-stop, and playing like a maniac at the park.
As I sat through the year-end assembly - listening to the older kids speak, the little kids sing, then watched Jack say goodbye to his teacher, I just couldn't contain my tears of pride, excitement, yet sadness.
The year is done - my boy is growing up so fast. Days like today I really learn to slow down and let it all sink in.
Today was Jack's day, and I am so proud of my boy.
Wednesday 26 June 2013
Out with the old...
Nothing beats a good reorganizing.
A clean summer start. A new collection of Rubbermaid bins to sort and stack. I've been meaning to go through my "random piles of kid stuff" for some time now.
The school year has come to an end for Jack and there is a large pile of Kindergarten mementos I know I'll want to save for decades.
Time for a haircut for the boy. Trimming of the nails.
A trip to the dumpster for Oliver.... it was time to let go of all the bottles and baby stuff. He proudly walked everything there, nodding with delight that he was a big boy now.
Sometimes a good clean is the most cathartic feeling on earth. It's an easy accomplishment that takes away that extra stress-inducing clutter.
This freshness is nice. Plus, it's a lot of happy-tears memories:
A clean summer start. A new collection of Rubbermaid bins to sort and stack. I've been meaning to go through my "random piles of kid stuff" for some time now.
The school year has come to an end for Jack and there is a large pile of Kindergarten mementos I know I'll want to save for decades.
Time for a haircut for the boy. Trimming of the nails.
A trip to the dumpster for Oliver.... it was time to let go of all the bottles and baby stuff. He proudly walked everything there, nodding with delight that he was a big boy now.
Sometimes a good clean is the most cathartic feeling on earth. It's an easy accomplishment that takes away that extra stress-inducing clutter.
This freshness is nice. Plus, it's a lot of happy-tears memories:
 |
| The most precious baby booties (don't worry - I saved them) |
Monday 24 June 2013
"But you look good..."
If I had a dollar for every time I heard that.
People say it when they find out I have MS. People say it if they haven't seen me for a while.
And it seems to be happening a lot lately.
It's a quasi-compliment. The unintentional flattery, to me, becomes that much more obvious. It's as if I am supposed to look bad. Sick. Unhealthy. In need of assistance.
And I want people to know - most mornings at 7am I stand in front of the mirror, already exhausted, trying - so hard - to look good. To look normal. I make a concerted effort to do my hair, put on some makeup.
I do it mostly for me; it makes me confident and well put together.
But I also do it for those who like to comment on appearances. Because, honestly, I don't want to look sick. I don't want those uncomfortable questions to be asked.
But - and here's the most difficult thing to write - just because I look okay, doesn't mean I still don't need help. Could I use a couple hours without my kids on a regular basis? Yup. Next time you go to Costco, could you pick up a frozen lasagne for me? Yes please. I don't want to sound greedy or lazy - I just want this information to be available for those who want it. And.believe me, I am so grateful for everything that has already been done for me. So incredibly thankful.
It's so hard for me to ask for help. Sometimes I just need people to do things. Without asking, begging, reminding.
Cause there's a lot going on that my looks just don't share.
People say it when they find out I have MS. People say it if they haven't seen me for a while.
And it seems to be happening a lot lately.
It's a quasi-compliment. The unintentional flattery, to me, becomes that much more obvious. It's as if I am supposed to look bad. Sick. Unhealthy. In need of assistance.
And I want people to know - most mornings at 7am I stand in front of the mirror, already exhausted, trying - so hard - to look good. To look normal. I make a concerted effort to do my hair, put on some makeup.
I do it mostly for me; it makes me confident and well put together.
But I also do it for those who like to comment on appearances. Because, honestly, I don't want to look sick. I don't want those uncomfortable questions to be asked.
But - and here's the most difficult thing to write - just because I look okay, doesn't mean I still don't need help. Could I use a couple hours without my kids on a regular basis? Yup. Next time you go to Costco, could you pick up a frozen lasagne for me? Yes please. I don't want to sound greedy or lazy - I just want this information to be available for those who want it. And.believe me, I am so grateful for everything that has already been done for me. So incredibly thankful.
It's so hard for me to ask for help. Sometimes I just need people to do things. Without asking, begging, reminding.
Cause there's a lot going on that my looks just don't share.
Tuesday 18 June 2013
Today's music moment:
Not just a pretty face, musician Dominique Fricot is my newest go-to-guy for emotional purging.
As you know - music is a big part of this process for me.
His lyrics make me think. They tell a story I want to listen to. They make me want more.
Can you hear the Vancouver reference in my favourite, Haunted by Love?:
The song is about a break-up - love lost - yet it resonates at a level abstract enough to show relevance to us all. I particularly love this:
"Nobody's happy, nobody's healthy. Only the headless ride horses"
Show the man some love, and check him out here:
http://dominiquefricot.com/
As you know - music is a big part of this process for me.
His lyrics make me think. They tell a story I want to listen to. They make me want more.
Can you hear the Vancouver reference in my favourite, Haunted by Love?:
The song is about a break-up - love lost - yet it resonates at a level abstract enough to show relevance to us all. I particularly love this:
"Nobody's happy, nobody's healthy. Only the headless ride horses"
Show the man some love, and check him out here:
http://dominiquefricot.com/
Saturday 15 June 2013
The (un)mentionables...
Almost two months on Copaxone, and I feel like rewriting its accompanied 10-page booklet of potential side effects.
Let's start with... acne. That dreaded word I haven't heard in decades. It's me and the 14 year old boys fighting it out down the zit aisle. Many dollars later, it hasn't changed. I've tried toothpaste too. Nothing.
And to top that... weight gain. In that special little area I haven't thought about since my birthing years. The mid-body tire. Just enough to make everything fit just a little too snug. Enough to make me covet those disgusting maternity pants I lived in for months. The inheritance of my Grandmother's hips. The Mamas out there know exactly what I am talking about. I am eating perfectly - lots of whole foods, greens, berries, "safe for MS protein" - yet alas, no change. The wine, which is needed for desperate times, is still here, of course.
----
In case you hadn't heard, some lovely friends of mine decided to nominate me for Walmart's "Mom of the year" contest. I was completely flabbergasted. So flattered. Yet can't help but feel undeserving of such an honour. I have read through the profiles of some of the other Moms, and am blown away. These are some fantastic Mamas! What a compliment to be included alongside them.
Thank you, Ina and Pam, for your humbling words and love.
Click below if you'd like to read it:
Let's start with... acne. That dreaded word I haven't heard in decades. It's me and the 14 year old boys fighting it out down the zit aisle. Many dollars later, it hasn't changed. I've tried toothpaste too. Nothing.
And to top that... weight gain. In that special little area I haven't thought about since my birthing years. The mid-body tire. Just enough to make everything fit just a little too snug. Enough to make me covet those disgusting maternity pants I lived in for months. The inheritance of my Grandmother's hips. The Mamas out there know exactly what I am talking about. I am eating perfectly - lots of whole foods, greens, berries, "safe for MS protein" - yet alas, no change. The wine, which is needed for desperate times, is still here, of course.
----
In case you hadn't heard, some lovely friends of mine decided to nominate me for Walmart's "Mom of the year" contest. I was completely flabbergasted. So flattered. Yet can't help but feel undeserving of such an honour. I have read through the profiles of some of the other Moms, and am blown away. These are some fantastic Mamas! What a compliment to be included alongside them.
Thank you, Ina and Pam, for your humbling words and love.
Click below if you'd like to read it:
Tuesday 11 June 2013
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...
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...
Monday 10 June 2013
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...
----
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:
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...
----
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:
Monday 3 June 2013
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.
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.
Wednesday 29 May 2013
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.
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.
Monday 27 May 2013
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.
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.
Saturday 25 May 2013
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.
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.
Tuesday 21 May 2013
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.
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