I went to buy a bottle of bubbly for tonight and, while paying, was asked what my resolutions for 2013 are. I stood there, silent and stunned. A million thoughts ran through my head. I could have had an hour long conversation with this man - pouring out every last thought and detail - right from the bottom of my soul. Everything that has happened in 2012, and why I will be so glad to see it gone. Instead, I told him I try not to make resolutions. They turn life into something "achievable" rather than something to enjoy.
That being said - 2012 was a very difficult year for me. It has brought a multitude of huge changes in my life. Changes that will never go away. Changes that have been excruciating and confusing to accept. I don't anticipate that the dawn of a new year will make those emotions disappear. It is impossible for them to simply vanish.
But 2013 will bring a new start. It will not be the year I got diagnosed. It will not be the year my concept of me got flipped on its axis.
So, tonight, with my bubbly, rather than welcome 2013 with a list of resolutions, I will excitedly, yet probably with tears, say goodbye to 2012. My hope for 2013 is one of health and happiness.
Monday 31 December 2012
Monday 24 December 2012
Something beautiful
The lure of a tattoo has been with me for a while: Creating meaningful permanence. Reclaiming some of the control I have lost from my body.
I wanted something with personal importance. And I wanted something that would signify a certain moment in my life.
What better time than now...
I decided on a small feather with a tangled, flawed area. I wanted something that symbolizes freedom and strength, yet more importantly, something to act as a reminder that despite this terrifying disease, my life can be beautiful and awe-inspiring. Imperfections included.
Merry Christmas and Happy Holidays. Enjoy the beauty in life. And embrace your imperfections.
I wanted something with personal importance. And I wanted something that would signify a certain moment in my life.
What better time than now...
I decided on a small feather with a tangled, flawed area. I wanted something that symbolizes freedom and strength, yet more importantly, something to act as a reminder that despite this terrifying disease, my life can be beautiful and awe-inspiring. Imperfections included.
Merry Christmas and Happy Holidays. Enjoy the beauty in life. And embrace your imperfections.
Tuesday 4 December 2012
The diagnosis continuum
Today I saw my neurologist. We discussed my first 2 months on medication, the side-effects, my small relapse, and then, my MRI results.
The pessimistic realist in me expected the results to be bad - I assumed it would be an abnormal MRI. There would be lesions.
Yet, although expected, there was still so much emotional sadness and surprise when he told me my spinal cord is now affected as well.
I have one transverse lesion at C4 (cervical vertebrae 4). This means it occupies almost the entire horizontal space at that level of my spinal cord. There are usually fewer lesions in the spinal cord than the brain - for physical-space and anatomical reasons. So, the fact that I have more than twelve in my brain and just the one on my spinal cord does not matter. My entire central nervous system is officially affected by this horrifyingly scary disease.
I feel invaded. Occupied.
And perhaps, more-so right this moment, sad. I don't know why - the MS is not new. And the diagnosis is not new. But knowing that this disease is now all-encompassing in my body makes it that much more daunting. That much more overwhelming.
And so, we continue. Blood tests every 4 weeks; Neurologist appointment and MRI every 6 months.
I gotta breathe this all in for a while...
The pessimistic realist in me expected the results to be bad - I assumed it would be an abnormal MRI. There would be lesions.
Yet, although expected, there was still so much emotional sadness and surprise when he told me my spinal cord is now affected as well.
I have one transverse lesion at C4 (cervical vertebrae 4). This means it occupies almost the entire horizontal space at that level of my spinal cord. There are usually fewer lesions in the spinal cord than the brain - for physical-space and anatomical reasons. So, the fact that I have more than twelve in my brain and just the one on my spinal cord does not matter. My entire central nervous system is officially affected by this horrifyingly scary disease.
I feel invaded. Occupied.
And perhaps, more-so right this moment, sad. I don't know why - the MS is not new. And the diagnosis is not new. But knowing that this disease is now all-encompassing in my body makes it that much more daunting. That much more overwhelming.
And so, we continue. Blood tests every 4 weeks; Neurologist appointment and MRI every 6 months.
I gotta breathe this all in for a while...
Thursday 29 November 2012
Admittance
I have a fantastic group of online Mommy friends. They get to hear me rant and whine and vent. Especially now. But you know what is so fantastic? They listen, console, (virtual) hug, and offer advice that is do-able and works. I have only met a few of them in real life, but the entire group of then - more than a hundred - have helped me more than I can say.
When I vented about my current mind-frame, and how alone and sad I was starting to get, many of them suggested that perhaps I was appearing to be "coping too well" to the outside eye. Maybe it was time to share some of my other, perhaps less-pleasant, feelings.
So here goes...
I feel alone.
I feel sad.
I feel scared.
I feel stressed.
I wish I had more offers of help. Even a phone call or email to see how I am doing. A card in the mail or a visit for coffee and cake. I love each and every person who is in my life, and I want them to know how I am feeling. I know that many friends and family will not know what to say or do to make me feel "better," but that's okay. Say and do whatever you want. We can talk about other things. We can just hang out. It can be 5 minutes or 5 hours. It all helps. And it all makes me feel more human and more happy. And right now, anything that enduces happiness is a good thing.
People - I miss you. Let's have some time together.
When I vented about my current mind-frame, and how alone and sad I was starting to get, many of them suggested that perhaps I was appearing to be "coping too well" to the outside eye. Maybe it was time to share some of my other, perhaps less-pleasant, feelings.
So here goes...
I feel alone.
I feel sad.
I feel scared.
I feel stressed.
I wish I had more offers of help. Even a phone call or email to see how I am doing. A card in the mail or a visit for coffee and cake. I love each and every person who is in my life, and I want them to know how I am feeling. I know that many friends and family will not know what to say or do to make me feel "better," but that's okay. Say and do whatever you want. We can talk about other things. We can just hang out. It can be 5 minutes or 5 hours. It all helps. And it all makes me feel more human and more happy. And right now, anything that enduces happiness is a good thing.
People - I miss you. Let's have some time together.
Monday 26 November 2012
Blood
I will push aside hunky Dexter (get it?... blood?) from my mind, and do the update...
I go to the lab every 4 weeks for a full work up to ensure my medication is not sneakily affecting my body in any negative ways. It can be prone to do that - especially to the liver.
I now have my baseline results, month 1 at titrating dose, and month 2 at full dose. The scoop? No adverse changes! Despite the headaches, pains, chills, needle marks and red splotches now covering my "fatty bits," my body is taking this medication in; letting it do it's work.
I'll get to see my spinal cord MRI results next week to go lesion-hunting. I only hope there is good news on that front too.
Hallelujah for small victories. The wine will be moderately flowing on non-injection nights!
I go to the lab every 4 weeks for a full work up to ensure my medication is not sneakily affecting my body in any negative ways. It can be prone to do that - especially to the liver.
I now have my baseline results, month 1 at titrating dose, and month 2 at full dose. The scoop? No adverse changes! Despite the headaches, pains, chills, needle marks and red splotches now covering my "fatty bits," my body is taking this medication in; letting it do it's work.
I'll get to see my spinal cord MRI results next week to go lesion-hunting. I only hope there is good news on that front too.
Hallelujah for small victories. The wine will be moderately flowing on non-injection nights!
Wednesday 21 November 2012
Three month thoughts
Three months ago today I got my diagnosis.
There has been a lot to digest in that time. So much to intellectually understand, yet even more to emotionally understand. Yet the need to emotionally commit myself to this diagnosis. Fight the fear of knowing and dive head first into the unknowing.
I have come to the conclusion that if this diagnosis needs to serve a purpose in my life, that lesson is:
Learn how to lose control. And learn how to be okay with that.
There has been a lot to digest in that time. So much to intellectually understand, yet even more to emotionally understand. Yet the need to emotionally commit myself to this diagnosis. Fight the fear of knowing and dive head first into the unknowing.
I have come to the conclusion that if this diagnosis needs to serve a purpose in my life, that lesson is:
Learn how to lose control. And learn how to be okay with that.
This process takes vivid and deliberate reactions to
life. Giving myself daily
instructions, motivations, or guides.
Moving slowly through life; allowing myself time to gauge my own
reactions. How do I feel? What do I think? How can I turn this moment into something
positive?
What can I do to allow my life to re-focus and return to
normality?
How do I stop myself from getting depressed, sad, lonely?
Whether it be moments, days, or longer, it was (and still is)
important for me to come to this stage. To
resist the urge to wish for another body or ask “why me?” To come to the
realization that this is it. And I
am the person alive inside this body.
This is my shot at life.
Losing control, in this sense, does not mean I plan to stop fighting against my disease. Simply, I think it becomes an acceptance of it.
Yup, it’s there, it’s not leaving, and yes, I am still going to do
everything I can to fight it.
But, like life itself, it's a process... and my new mantra of "letting go" continues...
Monday 19 November 2012
Walk with me!
Join my team for the 2013 Vancouver MS walk! We are called "Making Lemonade" and you can find us here:
http://mssoc.convio.net/site/TR/Walk/BCandYukonDivision?px=1643137&pg=personal&fr_id=1924
To those who have donated already, I am beyond touched by your generosity and support. Thank you for all the love!
http://mssoc.convio.net/site/TR/Walk/BCandYukonDivision?px=1643137&pg=personal&fr_id=1924
To those who have donated already, I am beyond touched by your generosity and support. Thank you for all the love!
Friday 2 November 2012
A motley mixture...
Of my thoughts, that is.
My dose of Rebif goes up by 100% tonight. It's my final bump up and my month-long drug titration is done. My regular, "for-life" dose begins. I almost feel like celebrating... I have survived the needles, the bruises, the weird red marks, the week-long headaches and body pains. Now - I hope - things will self-regulate and my body will be in tune with the medication over the long-term.
The tingly toes have subsided - except for one, and the tingly fingers came and went, with just one sticking around for now. I must be amusing to watch - tapping finger against finger - trying to figure out what feels new, different, the same - or whether, indeed - I really am just crazy. The MS-mind is the ultimate test of anxiety-control. Sometimes I pass, a lot of the time I fail. There is this overwhelming sense of "waiting" that does not subdue. Waiting for what happens next and not knowing. Waiting to see how bad it will be and and not knowing. And waiting for when and not knowing.
I typically do not do well with the whole "not knowing" scenario. Another ironic twist to this diagnosis, another lesson for me to learn, another route I have to choose with acceptance.
Grounding myself in specific things helps fight this out-of-control feeling. I am trying to be more deliberate in life. To talk more. To enjoy and look at beautiful things. I finally unpacked my Grandmother's crystal wine glasses - and used one. Sitting quietly, just looking at this beautiful glass, feeling it's weight in my hands, made me smile and think of my her. It was a genuinely happy (with no lingering crazy-MS thoughts) moment. Next, I meet with and design my dainty, yet significant tattoo with one of this city's most respected artists. Now that's control I look forward to...
My dose of Rebif goes up by 100% tonight. It's my final bump up and my month-long drug titration is done. My regular, "for-life" dose begins. I almost feel like celebrating... I have survived the needles, the bruises, the weird red marks, the week-long headaches and body pains. Now - I hope - things will self-regulate and my body will be in tune with the medication over the long-term.
The tingly toes have subsided - except for one, and the tingly fingers came and went, with just one sticking around for now. I must be amusing to watch - tapping finger against finger - trying to figure out what feels new, different, the same - or whether, indeed - I really am just crazy. The MS-mind is the ultimate test of anxiety-control. Sometimes I pass, a lot of the time I fail. There is this overwhelming sense of "waiting" that does not subdue. Waiting for what happens next and not knowing. Waiting to see how bad it will be and and not knowing. And waiting for when and not knowing.
I typically do not do well with the whole "not knowing" scenario. Another ironic twist to this diagnosis, another lesson for me to learn, another route I have to choose with acceptance.
Grounding myself in specific things helps fight this out-of-control feeling. I am trying to be more deliberate in life. To talk more. To enjoy and look at beautiful things. I finally unpacked my Grandmother's crystal wine glasses - and used one. Sitting quietly, just looking at this beautiful glass, feeling it's weight in my hands, made me smile and think of my her. It was a genuinely happy (with no lingering crazy-MS thoughts) moment. Next, I meet with and design my dainty, yet significant tattoo with one of this city's most respected artists. Now that's control I look forward to...
Wednesday 24 October 2012
Relapse
The tingy toes have progressed. Now it's numb toes and a tingly entire left foot.
It's been about a week.
It comes and goes in it's severity. Mornings are the worst - that's when it actually hurts. After a hike up the hill (plus stroller - with 30 pounds of toddler and kid-stuff in it) to deliver Jack to school, it feels a little more "normal."
So today I made my first call to the MS clinic "relapse line" to announce what was happening. What an oddly fascinating sick person check-in that is... "Yes, hello, just calling to let you know I can't feel my toes." The thing is - there is nothing that can be done for this. I just wait it out, cross my fingers - and said numb toes - and hope it does not progress further. If it were worse, I could take a course of IV steroids to speed up the recovery.
It is not pure coincidence that this is happening right now. I started medication 3 weeks ago, and last week, upped my dose by more than double. My immune system is basically being attacked by the medication - it lets the MS leap up and grab this de-myelinating opportunity. What irony. "You may get worse before you get better" they like to say. Basically, starting the medication, and allowing my body time to get used to it, is probably going to make me sick.
The past few days have been an all-too-real downer in the lessons of life. I am focusing every ounce of my energy into living each moment. We go to the aquarium, and gym class. And I find ways for us to be active and busy. But this little wriggly stream-of-consciousness worm gets into my mind, and it's hard not to imagine the worst. It's hard for me to smile and pretend I feel fine sometimes. Honestly - it's exhausting.
I'll reach my full dose of medication in 10 days. I am focusing on when my body is healthier, has adapted to the medication, and is tingle-free... (and when my kids start listening!). I know it'll happen - all in time...
It's been about a week.
It comes and goes in it's severity. Mornings are the worst - that's when it actually hurts. After a hike up the hill (plus stroller - with 30 pounds of toddler and kid-stuff in it) to deliver Jack to school, it feels a little more "normal."
So today I made my first call to the MS clinic "relapse line" to announce what was happening. What an oddly fascinating sick person check-in that is... "Yes, hello, just calling to let you know I can't feel my toes." The thing is - there is nothing that can be done for this. I just wait it out, cross my fingers - and said numb toes - and hope it does not progress further. If it were worse, I could take a course of IV steroids to speed up the recovery.
It is not pure coincidence that this is happening right now. I started medication 3 weeks ago, and last week, upped my dose by more than double. My immune system is basically being attacked by the medication - it lets the MS leap up and grab this de-myelinating opportunity. What irony. "You may get worse before you get better" they like to say. Basically, starting the medication, and allowing my body time to get used to it, is probably going to make me sick.
The past few days have been an all-too-real downer in the lessons of life. I am focusing every ounce of my energy into living each moment. We go to the aquarium, and gym class. And I find ways for us to be active and busy. But this little wriggly stream-of-consciousness worm gets into my mind, and it's hard not to imagine the worst. It's hard for me to smile and pretend I feel fine sometimes. Honestly - it's exhausting.
I'll reach my full dose of medication in 10 days. I am focusing on when my body is healthier, has adapted to the medication, and is tingle-free... (and when my kids start listening!). I know it'll happen - all in time...
Saturday 20 October 2012
Tingly toes
Nothing makes you feel "sick" like spending an hour and a half inside an MRI machine. Not cough-cough sick, but people-are-talking-about-you-in-hushed-whispers sick. Inwardly - "investigationally" sick. Where you look completely fine on the outside, but more is brewing beneath. So, I had some (well-deserved) alone time inside a medical coffin yesterday, to image my spinal cord and see if lesions have affected it along with my brain.
An MRI gets hot - and 90 mins of clanking and whizzing makes you feel like you've been cooked from the inside out. While you are stuck in there, the techs like to talk to you over the headset to tell you what's coming up. The best line - on repeat - "Okay Sarah - this next image is going to take 6 minutes. Please stay still and DO NOT swallow." Well, now that that's been perfectly emphasized ALL I can bloody well think about is swallowing. Or coughing. Singing maybe? It took all of my new-found meditation skills to get through that.
I am now 2 weeks into my injections. My dose went up a notch in my titration schedule last night. And I am feeling okay. That is the best of descriptors I can use. Sorry. Better than blah, right? The worse side effects are lobotomizing headaches, exhaustion, and skin redness and reactions. But, I am no longer scared of my boxes of needles - progress.
I have been feeling tingling and numbness in my toes again. It's hard to say if it's a genuine MS relapse or an autoimmune reaction to my brain-conquering medication. Although it is not painful, it is a very real, literally step-by-step reminder to me that something is wrong. My brain is sick, and my body gets to experience it.
Me and my tingly toes went for a pedicure today. A dark purple one. Bring it, rainy season, my toes are ready.
An MRI gets hot - and 90 mins of clanking and whizzing makes you feel like you've been cooked from the inside out. While you are stuck in there, the techs like to talk to you over the headset to tell you what's coming up. The best line - on repeat - "Okay Sarah - this next image is going to take 6 minutes. Please stay still and DO NOT swallow." Well, now that that's been perfectly emphasized ALL I can bloody well think about is swallowing. Or coughing. Singing maybe? It took all of my new-found meditation skills to get through that.
I am now 2 weeks into my injections. My dose went up a notch in my titration schedule last night. And I am feeling okay. That is the best of descriptors I can use. Sorry. Better than blah, right? The worse side effects are lobotomizing headaches, exhaustion, and skin redness and reactions. But, I am no longer scared of my boxes of needles - progress.
I have been feeling tingling and numbness in my toes again. It's hard to say if it's a genuine MS relapse or an autoimmune reaction to my brain-conquering medication. Although it is not painful, it is a very real, literally step-by-step reminder to me that something is wrong. My brain is sick, and my body gets to experience it.
Me and my tingly toes went for a pedicure today. A dark purple one. Bring it, rainy season, my toes are ready.
Thursday 18 October 2012
Unconditional love
Sometimes support comes in the smallest of packages. And sometimes, this support comes from the bond that only a mother and child can share.
I often catch my reflection in a random mirror, stop and stare, and think to myself - my god - you are a Mother. A Mother.... bearer of life and responsible for everything. Sometimes it doesn't feel real. Like the past 5 years have been blurred by some sort of alternate reality.
But last night, Jack, in his littlest and quietest (which, if you know Jack, does not ever happen), asked if he could sit with me while I did my injection. My boy was willing to give up extra story time with his brother to be with me - and not during the most pleasant of moments.
He sat - incredibly still - and in that same uncharacteristically little voice, would stop me and say "Mommy - I have a question..." We went through the injection step-by-step, as I explained and he listened.
Then - he told me if he ever had "what Mommy has he'd be big and strong too." My heart skipped a beat. He knew that I was trying so hard to be "big and strong." In whatever form, he can see it. And he knows it. But in that same moment, I looked at him, hugged him - and I hope and wish he never knows his own life with MS.
It was good for both of us. I needed him to know what was going on. And so did he. He still doesn't understand what is wrong with me, or what MS encompasses. But at least now he can see what I have to do to my body, and is not scared or uncomfortable.
It was an important moment.
I often catch my reflection in a random mirror, stop and stare, and think to myself - my god - you are a Mother. A Mother.... bearer of life and responsible for everything. Sometimes it doesn't feel real. Like the past 5 years have been blurred by some sort of alternate reality.
But last night, Jack, in his littlest and quietest (which, if you know Jack, does not ever happen), asked if he could sit with me while I did my injection. My boy was willing to give up extra story time with his brother to be with me - and not during the most pleasant of moments.
He sat - incredibly still - and in that same uncharacteristically little voice, would stop me and say "Mommy - I have a question..." We went through the injection step-by-step, as I explained and he listened.
Then - he told me if he ever had "what Mommy has he'd be big and strong too." My heart skipped a beat. He knew that I was trying so hard to be "big and strong." In whatever form, he can see it. And he knows it. But in that same moment, I looked at him, hugged him - and I hope and wish he never knows his own life with MS.
It was good for both of us. I needed him to know what was going on. And so did he. He still doesn't understand what is wrong with me, or what MS encompasses. But at least now he can see what I have to do to my body, and is not scared or uncomfortable.
It was an important moment.
Wednesday 17 October 2012
Music for the soul
Listening to Beth Orton soothes me, motivates me, and calms me. She makes the kind of music that helps you get through life. She seems to seep right into your pores, take on whatever it is you are feeling, and channel it so perfectly. So perfectly, I usually end up crying.
I discovered her music more than 10 years ago while living in England, and have been an avid fan since. I own each record - coveting them, saving them. I have seen her perform in England, and in Vancouver. So when I saw that she was coming back after a 6 year hiatus, it was like destiny. This woman - the one who musically speaks right to the core of my soul - was coming here at the exact moment I needed her music to help me. My emotions evoke response through music like a Pavlovian dog.
The moment she took the stage - completely alone - with just her guitar - I was mesmerized. I may have even held my breath for a few moments. I will never tire of watching her perform. Her voice rasps and quivers with emotion each second she sings. A completely unique Joni Mitchell-esque sound. A true talent can stand up there, without back-up, machines, or syncing, and perform, true to life.
I felt my emotions deep into every inch of flesh and skin. Right to my heart. And exactly what I needed. And hey - it doesn't hurt that I got to meet her and get her to sign a venue poster. Yes, I stood side-stage with the crazy(-er than me) fan with printed-out photos of her, and the woman in tears (that was not me, thank god) and waited to see if she would emerge. She did. I honestly don't even remember what I said to her... I think I mumbled something about loving her music and that I was sorry I didn't have anything better than my grease-stained and partially bent (free) paper poster for her to sign.
Thank you, Beth Orton, for providing beautiful music, being the faucet to my emotions, and for helping me forget - even for just a couple hours...
I discovered her music more than 10 years ago while living in England, and have been an avid fan since. I own each record - coveting them, saving them. I have seen her perform in England, and in Vancouver. So when I saw that she was coming back after a 6 year hiatus, it was like destiny. This woman - the one who musically speaks right to the core of my soul - was coming here at the exact moment I needed her music to help me. My emotions evoke response through music like a Pavlovian dog.
The moment she took the stage - completely alone - with just her guitar - I was mesmerized. I may have even held my breath for a few moments. I will never tire of watching her perform. Her voice rasps and quivers with emotion each second she sings. A completely unique Joni Mitchell-esque sound. A true talent can stand up there, without back-up, machines, or syncing, and perform, true to life.
I felt my emotions deep into every inch of flesh and skin. Right to my heart. And exactly what I needed. And hey - it doesn't hurt that I got to meet her and get her to sign a venue poster. Yes, I stood side-stage with the crazy(-er than me) fan with printed-out photos of her, and the woman in tears (that was not me, thank god) and waited to see if she would emerge. She did. I honestly don't even remember what I said to her... I think I mumbled something about loving her music and that I was sorry I didn't have anything better than my grease-stained and partially bent (free) paper poster for her to sign.
Thank you, Beth Orton, for providing beautiful music, being the faucet to my emotions, and for helping me forget - even for just a couple hours...
Wednesday 10 October 2012
Hope
Hope: to look forward to with desire or reasonable confidence; To believe, desire or trust.
The MS Society of Canada supports this intuitive sentiment with the "red band of hope." I have 8 more to give away - if you'd like to show your support.
The MS Society of Canada supports this intuitive sentiment with the "red band of hope." I have 8 more to give away - if you'd like to show your support.
Tuesday 9 October 2012
Inquiring minds want to know...
How big the needle is!
So, for you curious folk (and don't be ashamed - I'd, of course, ask too), here's the best I could do.
My warning - look away if you hate needles.
I know there is no point of reference here, so it's hard to really see the size. The needle injects about 1.2 cm into me if that helps. This is the needle tip (it comes with a cap so I can handle it safely) that gets inserted into the auto-injector - and gets disposed of afterwards. The multi-dose cartridge stays in the machine until it is empty and I need to insert a new one.
If you have any other questions, feel free to ask.
So, for you curious folk (and don't be ashamed - I'd, of course, ask too), here's the best I could do.
My warning - look away if you hate needles.
I know there is no point of reference here, so it's hard to really see the size. The needle injects about 1.2 cm into me if that helps. This is the needle tip (it comes with a cap so I can handle it safely) that gets inserted into the auto-injector - and gets disposed of afterwards. The multi-dose cartridge stays in the machine until it is empty and I need to insert a new one.
If you have any other questions, feel free to ask.
Monday 8 October 2012
Take two
A knock at the door surprised me tonight. I was already in my (very unflattering) pajamas and was preparing my big box o' fun full of injection stuff for shot number 2...
I had been craving pumpkin pie like nobody's business, and E and R made my night just a little bit sweeter with a wonderful personal delivery.
Nothing makes shot-night better like a dessert does.
And shot-night did happen. Just now. I did the injection without a nurse here to hold me down, to correct me. I went a little higher on my thigh - purely for fat - and it didn't hurt quite as much. I also didn't bleed, which was a well-deserved bonus, I think.
Then it was done. Needle removed, and emptied. Aforementioned box o' fun tidied.
Slowly, but surely, my pent-up emotions about this diagnosis are coming out. There was one teary moment last week, when I chatted with a fellow MS-er for hours. And tonight, another. I just sat at the kitchen table - leg stinging from the medication - and cried. I cried not because of the injection - but rather just allowed myself that moment I needed to get some negative energy out.
Crying feels good. And so does pumpkin pie...
I had been craving pumpkin pie like nobody's business, and E and R made my night just a little bit sweeter with a wonderful personal delivery.
Nothing makes shot-night better like a dessert does.
And shot-night did happen. Just now. I did the injection without a nurse here to hold me down, to correct me. I went a little higher on my thigh - purely for fat - and it didn't hurt quite as much. I also didn't bleed, which was a well-deserved bonus, I think.
Then it was done. Needle removed, and emptied. Aforementioned box o' fun tidied.
Slowly, but surely, my pent-up emotions about this diagnosis are coming out. There was one teary moment last week, when I chatted with a fellow MS-er for hours. And tonight, another. I just sat at the kitchen table - leg stinging from the medication - and cried. I cried not because of the injection - but rather just allowed myself that moment I needed to get some negative energy out.
Crying feels good. And so does pumpkin pie...
Sunday 7 October 2012
Life is a verb
Today I was gifted this book.
There is so much truth right there in that cover. The title itself is enough get-up-and-go to inspire anyone. Whether that inspiration means overcoming an obstacle, intervening in one's life, or dealing with something surprising and upsetting.
The awesomeness that is this book starts with:
"At some point in your life, you'll only have 37 days to live. Maybe that day is today. Maybe not."
That thought then progresses to "what would I be doing today if I only had 37 days to live?"
The answer begins with the realization that it wasn't about up-rooting life altogether but rather "was about living each individual, glorious day with more intention. It was simply about saying yes, being generous, speaking up, loving more, trusting myself, and slowing down. It was about fully inhabiting the life I have."
S - your generosity brought me to tears today. Friendship and understanding truly are some of my greatest gifts in life. Thank you.
There is so much truth right there in that cover. The title itself is enough get-up-and-go to inspire anyone. Whether that inspiration means overcoming an obstacle, intervening in one's life, or dealing with something surprising and upsetting.
The awesomeness that is this book starts with:
"At some point in your life, you'll only have 37 days to live. Maybe that day is today. Maybe not."
That thought then progresses to "what would I be doing today if I only had 37 days to live?"
The answer begins with the realization that it wasn't about up-rooting life altogether but rather "was about living each individual, glorious day with more intention. It was simply about saying yes, being generous, speaking up, loving more, trusting myself, and slowing down. It was about fully inhabiting the life I have."
S - your generosity brought me to tears today. Friendship and understanding truly are some of my greatest gifts in life. Thank you.
Thankful
With life's downs, also come life's highs. The moments we should embrace, enjoy, and be thankful for. Of my thirty three years on earth, I suppose the timing of this Thanksgiving is not the most apt. I am not in a celebratory mood these days. But, as I tell myself, celebration differs vastly from thankfulness. Here's my mustered-up list:
I am most thankful for my children's health and happiness. I have two amazing boys who make me laugh and smile each day (even though they make me want to drink too much wine).
I am thankful for my family and friends. And especially for anyone who has taken the time or energy to help me over the past few months. Your words, and your listening, have helped me be stronger more than you probably know.
I am thankful for our healthcare system and my health insurance. Seriously. Facing such a diagnosis (and not the most pleasant of treatments) is not the time anyone should have to worry about money.
I am thankful for wine. Enough said. (Oh, and coffee).
I am thankful for all my post-baby fatty areas. Assuming that perhaps I planned this - you know - through all my vigorous working out?... that little extra bit of fat that I didn't have 5 years ago is going to come in handy. And it's in all the right places for injections! Love-handles: you will make my shots much more bearable.
And above all - I am thankful for life. Thankful for each day I am here. Each day I get to breathe, smile, read, talk, listen, and live...
I am most thankful for my children's health and happiness. I have two amazing boys who make me laugh and smile each day (even though they make me want to drink too much wine).
I am thankful for my family and friends. And especially for anyone who has taken the time or energy to help me over the past few months. Your words, and your listening, have helped me be stronger more than you probably know.
I am thankful for our healthcare system and my health insurance. Seriously. Facing such a diagnosis (and not the most pleasant of treatments) is not the time anyone should have to worry about money.
I am thankful for wine. Enough said. (Oh, and coffee).
I am thankful for all my post-baby fatty areas. Assuming that perhaps I planned this - you know - through all my vigorous working out?... that little extra bit of fat that I didn't have 5 years ago is going to come in handy. And it's in all the right places for injections! Love-handles: you will make my shots much more bearable.
And above all - I am thankful for life. Thankful for each day I am here. Each day I get to breathe, smile, read, talk, listen, and live...
Friday 5 October 2012
I did it!
Today I gave myself my very first injection.
And it still feels so surreal to say that.
A lovely nurse came over for 2 hours to teach me everything and to let me practice (with fake meds and a little patch of fake skin). We programmed my auto-injector for needle speed, injection speed, injection depth, and injection time. Then it was time to go - I did this injection on my upper thigh, as it's a good starting point (I need to vary the location of each injection). I inserted the needle into the injector, removed the cap, made sure the correct dosage was indicated. Then I pressed the machine to my leg and waited for the infrared sensor to know it was next to my skin. That makes the top of the machine glow green - and tells me everything is ready and I can release the needle. The nurse put her hand on top of mine to ensure I wouldn't automatically flinch away. Then it was up to me - I had to press that glowing green button. She told me I could take some deep breaths, or count, or do anything that would help. What I needed was to just press that button... so I did. I felt the needle go in - but it wasn't too bad. I could feel the medication go in, and the needle come back out - which hurt more. The entire process takes about 10 seconds. Then my machine beeps twice to let me know everything is done and I move it away from my body. Then I remove the needle from the machine, put it in my sharps bin, clean up the tiny amount of blood (I am bleeder), and massage the area for a few minutes.
Doing this - successfully - for the first time, makes me happy. I can do this. I can purposefully stick a needle into my body - without knowing what will come of it.
A few hours later - I am starting to feel the side effects full-force. My head hurts, my body aches and I feel a bit off. I am going to tuck myself into bed with some Facebook and my Kobo to relax now.
See you again on Monday, auto-injector. Left thigh next time...
And it still feels so surreal to say that.
A lovely nurse came over for 2 hours to teach me everything and to let me practice (with fake meds and a little patch of fake skin). We programmed my auto-injector for needle speed, injection speed, injection depth, and injection time. Then it was time to go - I did this injection on my upper thigh, as it's a good starting point (I need to vary the location of each injection). I inserted the needle into the injector, removed the cap, made sure the correct dosage was indicated. Then I pressed the machine to my leg and waited for the infrared sensor to know it was next to my skin. That makes the top of the machine glow green - and tells me everything is ready and I can release the needle. The nurse put her hand on top of mine to ensure I wouldn't automatically flinch away. Then it was up to me - I had to press that glowing green button. She told me I could take some deep breaths, or count, or do anything that would help. What I needed was to just press that button... so I did. I felt the needle go in - but it wasn't too bad. I could feel the medication go in, and the needle come back out - which hurt more. The entire process takes about 10 seconds. Then my machine beeps twice to let me know everything is done and I move it away from my body. Then I remove the needle from the machine, put it in my sharps bin, clean up the tiny amount of blood (I am bleeder), and massage the area for a few minutes.
Doing this - successfully - for the first time, makes me happy. I can do this. I can purposefully stick a needle into my body - without knowing what will come of it.
A few hours later - I am starting to feel the side effects full-force. My head hurts, my body aches and I feel a bit off. I am going to tuck myself into bed with some Facebook and my Kobo to relax now.
See you again on Monday, auto-injector. Left thigh next time...
Wednesday 3 October 2012
Ready to go...
Today I received my stuff. My injector, boxes of needles, another sharps bin and alcohol swabs. Yes, even a tote and a fanny pack. For all my fashionable travels, I suppose. And the best - a screwdriver and .... wait for it... a "needle remover." I hope I never have to figure that one out.
The injector itself comes in a nice little box, and even has a wrist strap... in case I drop it mid-injection? (if so, maybe that's why I also got the needle remover?)
Now the nurse just needs to come on Friday morning and I do my first shot...
The injector itself comes in a nice little box, and even has a wrist strap... in case I drop it mid-injection? (if so, maybe that's why I also got the needle remover?)
Now the nurse just needs to come on Friday morning and I do my first shot...
Monday 1 October 2012
Exhaustion
One of the biggest ongoing symptoms of MS is extreme exhaustion. This, I have suffered with for many years. Even pre-kids, I would often want to spend my time napping - or not have enough energy for simple things.
Now, with 2 kids, plus the diagnosis, I find myself asking "Am I tired because I have 2 young, busy kids or I am tired because of the MS?" It is this revolving door of symptoms, and for me, a lack of explanation. Back and forth from Motherhood to multiple sclerosis. Ironically enough - some of MS's biggies are also a typical young Mom's life - exhaustion, baby-brain forgetfulness and Mommy-bladder. It's a double-whammy of fun.
Sitting here right now... one kid is at school, the other is napping. And I just woke up from a nap. Nice and rested now? Nope. Now I am having some tea (going full-force caffeinated and not my usual anti-inflammatory green) in hopes of some energy. Maybe stick my head out the front door - fresh air has gotta help, right?
And I think of how to explain it. It's not an "I've been at work for 10 hours today" kind of tired, or a "I have a new baby and only get to sleep in 45 minute spurts" kind of tired. It's a "I feel like my entire body is encased in armour and I physically have to focus on pushing through the weight and sheer exhaustion to do anything." And I suppose the word "tired" doesn't cut it.... it's exhaustion. It's fatigue.
I used to think this was normal. I was a Mom. I was supposed to feel like this all the time. But now I know that this is different. So, so incredibly different. It is physical and mental. And it is, for the most part, always there.
I know that lifestyle choices are going to help this. I have started with diet changes and the introduction of supplements. I am trying to de-stress and relax more. Honestly - the best decision I have made (and never in a million years did I think I'd be saying this) was quitting my job. It wasn't because of the MS - but coincided exactly with the diagnosis. As much as I still love it, and do miss it - there is no more rushing, no more commuting, and finally - finally - I have some time to put myself first. To have some selfish time to listen to my body and not tell it to shut-up. I am so appreciative of that.
"The quieter you become, the more you can hear." - Ram Dass
Now, with 2 kids, plus the diagnosis, I find myself asking "Am I tired because I have 2 young, busy kids or I am tired because of the MS?" It is this revolving door of symptoms, and for me, a lack of explanation. Back and forth from Motherhood to multiple sclerosis. Ironically enough - some of MS's biggies are also a typical young Mom's life - exhaustion, baby-brain forgetfulness and Mommy-bladder. It's a double-whammy of fun.
Sitting here right now... one kid is at school, the other is napping. And I just woke up from a nap. Nice and rested now? Nope. Now I am having some tea (going full-force caffeinated and not my usual anti-inflammatory green) in hopes of some energy. Maybe stick my head out the front door - fresh air has gotta help, right?
And I think of how to explain it. It's not an "I've been at work for 10 hours today" kind of tired, or a "I have a new baby and only get to sleep in 45 minute spurts" kind of tired. It's a "I feel like my entire body is encased in armour and I physically have to focus on pushing through the weight and sheer exhaustion to do anything." And I suppose the word "tired" doesn't cut it.... it's exhaustion. It's fatigue.
I used to think this was normal. I was a Mom. I was supposed to feel like this all the time. But now I know that this is different. So, so incredibly different. It is physical and mental. And it is, for the most part, always there.
I know that lifestyle choices are going to help this. I have started with diet changes and the introduction of supplements. I am trying to de-stress and relax more. Honestly - the best decision I have made (and never in a million years did I think I'd be saying this) was quitting my job. It wasn't because of the MS - but coincided exactly with the diagnosis. As much as I still love it, and do miss it - there is no more rushing, no more commuting, and finally - finally - I have some time to put myself first. To have some selfish time to listen to my body and not tell it to shut-up. I am so appreciative of that.
"The quieter you become, the more you can hear." - Ram Dass
Thursday 27 September 2012
1586.77 smackeroos!
Yup, more than my mortgage payment. Crazy... I cannot believe 12 shots costs $1586.77.
Here's what a month's worth of medication looks like. These are the cartridges that get filled into the injector. The needles get attached after these suckers are in. Anti-climatic if you ask me.
Now I wait for my (free) $1500 "Rebismart autoinjector" to get the job done for me.
http://www.rebismart.com/en/index.html
After I collected my drugs, my sharps container, bought a lock box for the fridge (because, you know, my kids are crazy, and would somehow find a way to inject themselves with MS drugs), I sat for a few minutes in the parking lot. A non-descript plastic bag held all this stuff. I looked like any other shopper (except maybe to the woman staring at me as I discussed syringe disposal with the pharmacist and how big a sharps container I would need).
It's all unpacked now - all my new gear. I took a warm bath and had a good cry. Each day that passes brings a new level of realness to this. And right now it feels like a sucker-punch to the guts. You know... that slightly home-sick feeling of "how things used to be." Knowing that my reality - now sitting there in the fridge - is about to start. It is a bittersweet feeling - I am choosing to do this - to take these drugs. Choosing to feel scared and worried because of it. But I know I have to hold onto the hope that somewhere along the road, these drugs will help me.
And now - this lady is going to have a glass of wine!
Here's what a month's worth of medication looks like. These are the cartridges that get filled into the injector. The needles get attached after these suckers are in. Anti-climatic if you ask me.
Now I wait for my (free) $1500 "Rebismart autoinjector" to get the job done for me.
http://www.rebismart.com/en/index.html
After I collected my drugs, my sharps container, bought a lock box for the fridge (because, you know, my kids are crazy, and would somehow find a way to inject themselves with MS drugs), I sat for a few minutes in the parking lot. A non-descript plastic bag held all this stuff. I looked like any other shopper (except maybe to the woman staring at me as I discussed syringe disposal with the pharmacist and how big a sharps container I would need).
It's all unpacked now - all my new gear. I took a warm bath and had a good cry. Each day that passes brings a new level of realness to this. And right now it feels like a sucker-punch to the guts. You know... that slightly home-sick feeling of "how things used to be." Knowing that my reality - now sitting there in the fridge - is about to start. It is a bittersweet feeling - I am choosing to do this - to take these drugs. Choosing to feel scared and worried because of it. But I know I have to hold onto the hope that somewhere along the road, these drugs will help me.
And now - this lady is going to have a glass of wine!
Wednesday 26 September 2012
What would Cathy do?
When I first got this diagnosis I was watching a fantastic show called "The Big C." It follows the life of newly diagnosed Cathy (cancer, not MS. And yes, don't worry, I still remember I don't have cancer). She has become my fictional heroine - for all things d-i-a-g-n-o-s-i-s...
Even though the diseases are so different - the process, the reaction, the emotions are identical.
Who would have thought relating to this character, played by Laura Linney, would provide such comfort and reassurance to me. To show me, albeit fictional, that shit does happen, but life does keep going on. And that there are ways I can be in control. There are ways I can enjoy life, enjoy humour, or even go a little crazy (cause she sure does). I got to the point where moments of my diagnostic process were prefaced with the thought "What would Cathy do?" Yes, I actually thought this (sometimes out loud) to see if any voice would answer. And indeed, my subconscious (and craziness... and sometimes my pal Emily) would start talking.... telling me to pick up the phone, be the annoying patient who always gets what she needs and does not back down. Be the woman who just needs to escape for a while or the Mom who needs to pretend dinner doesn't have to get made.
So, I am at the point where the bazillion phone calls have been made. I've used all the connections I could muster. My prescription is at the pharmacy waiting to be filled, the nurse will be here within the week. My to-do list has lost a couple items. God, it feels good to scratch them off.
And for those of you who watch the show, don't worry - I don't have a secret identity just yet!
Even though the diseases are so different - the process, the reaction, the emotions are identical.
Who would have thought relating to this character, played by Laura Linney, would provide such comfort and reassurance to me. To show me, albeit fictional, that shit does happen, but life does keep going on. And that there are ways I can be in control. There are ways I can enjoy life, enjoy humour, or even go a little crazy (cause she sure does). I got to the point where moments of my diagnostic process were prefaced with the thought "What would Cathy do?" Yes, I actually thought this (sometimes out loud) to see if any voice would answer. And indeed, my subconscious (and craziness... and sometimes my pal Emily) would start talking.... telling me to pick up the phone, be the annoying patient who always gets what she needs and does not back down. Be the woman who just needs to escape for a while or the Mom who needs to pretend dinner doesn't have to get made.
So, I am at the point where the bazillion phone calls have been made. I've used all the connections I could muster. My prescription is at the pharmacy waiting to be filled, the nurse will be here within the week. My to-do list has lost a couple items. God, it feels good to scratch them off.
And for those of you who watch the show, don't worry - I don't have a secret identity just yet!
Wednesday 19 September 2012
The drug-decision
Today I had my 10th vial of blood taken since my diagnosis less than a month ago. Yes, I am counting.
The two tubes today were for my "interferon screen" pre-drug testing. I will be starting a class of drugs called Beta Interferon 1a - or commonly branded as Rebif. This drug, which is just one of many to choose from, will modify my body's T cell responses - make them less aggressive and harmful to my immune system. During an MS attack, my body's immune system gets activated and immune cells (T cells) go into destroy mode. These activated T cells attach to my blood-brain barrier, a layer of tightly packed cells that normally protect the central nervous system from harmful substances. When the T cells attach to the blood brain barrier, they are able to squeeze their way in. Once in, they attack the myelin covering the nerves in my brain and spinal cord. That signals an attack. An attack, or relapse, by definition, has to be a minimum of 24 hours, and include physical disability of some form. My two most recent relapses have lasted 2-3 weeks each.
This drug needs to be injected 3 times a week at home.
And there will be side effects - flu-like symptoms, injection site reactions, liver or thyroid problems (I'll need to really reduce the wine now!), allergic reactions and sometimes, depression.
And, here's the fun part - I get to be one of those people at the blood lab with a freaking standing order. Yup - all this testing happens once a month.
But - these drugs have been proven to reduce relapses by 1/3 and reduce the number of clinically-definied lesions on MRI.
Once the results from today's blood tests are back, I collect my $30,000 prescription and a nurse will come to my home to train me on giving myself the injections.
At today's clinic education (aka: pick your drug) session I met a group of newly diagnosed MS patients. There was a new mom who was only diagnosed yesterday, a woman who has only been living here for a couple months and had no idea what was happening, people who didn't have extended drug coverage and could not afford this. It's scary stuff. There is so much real, raw emotion in a process like this. When dealing with a upsetting diagnosis, you don't immediately think about finances and drug plans, and rotating injection sites on your body. There is so much to take in, understand, and accept. Things I never would have thought about 2 or 3 weeks ago.
Emotionally - I think today was my first vividly real moment of sadness. The tears came as I was driving home. Suddenly, there I was - looking at my life. Looking at what was happening, where I was going. Seeing myself as somebody else - fictional and dream-like.
I am going to allow these feeling of sadness to stick around for a while - I think they will do me some good. Because, with sadness comes relief.
The two tubes today were for my "interferon screen" pre-drug testing. I will be starting a class of drugs called Beta Interferon 1a - or commonly branded as Rebif. This drug, which is just one of many to choose from, will modify my body's T cell responses - make them less aggressive and harmful to my immune system. During an MS attack, my body's immune system gets activated and immune cells (T cells) go into destroy mode. These activated T cells attach to my blood-brain barrier, a layer of tightly packed cells that normally protect the central nervous system from harmful substances. When the T cells attach to the blood brain barrier, they are able to squeeze their way in. Once in, they attack the myelin covering the nerves in my brain and spinal cord. That signals an attack. An attack, or relapse, by definition, has to be a minimum of 24 hours, and include physical disability of some form. My two most recent relapses have lasted 2-3 weeks each.
This drug needs to be injected 3 times a week at home.
And there will be side effects - flu-like symptoms, injection site reactions, liver or thyroid problems (I'll need to really reduce the wine now!), allergic reactions and sometimes, depression.
And, here's the fun part - I get to be one of those people at the blood lab with a freaking standing order. Yup - all this testing happens once a month.
But - these drugs have been proven to reduce relapses by 1/3 and reduce the number of clinically-definied lesions on MRI.
Once the results from today's blood tests are back, I collect my $30,000 prescription and a nurse will come to my home to train me on giving myself the injections.
At today's clinic education (aka: pick your drug) session I met a group of newly diagnosed MS patients. There was a new mom who was only diagnosed yesterday, a woman who has only been living here for a couple months and had no idea what was happening, people who didn't have extended drug coverage and could not afford this. It's scary stuff. There is so much real, raw emotion in a process like this. When dealing with a upsetting diagnosis, you don't immediately think about finances and drug plans, and rotating injection sites on your body. There is so much to take in, understand, and accept. Things I never would have thought about 2 or 3 weeks ago.
Emotionally - I think today was my first vividly real moment of sadness. The tears came as I was driving home. Suddenly, there I was - looking at my life. Looking at what was happening, where I was going. Seeing myself as somebody else - fictional and dream-like.
I am going to allow these feeling of sadness to stick around for a while - I think they will do me some good. Because, with sadness comes relief.
Sunday 16 September 2012
My Angel...
Let me preface this post by saying that I am not religious. I do not go to church or follow any religious script. And if you feel the same, push the potential cheesiness aside before we go any further.
I do, however, consider myself to be spiritual. To believe in something "higher" or "beyond" us. I don't know why, and I can't say how. But I know I believe. I'd like to think there is something or someone out there helping me, guiding me, even protecting me.
I have felt this feeling before - after Jack was born 5 years ago. I was 2 weeks post-partum and hemorrhaging, with no pulse, and unconscious. Raced to the ER, it was as if time stood still. My body stopped bleeding, my tiny baby slept peacefully while I had surgery - it honestly felt like divine intervention. Not necessarily God-like, but there was something there. Something so vivid I can recall the exact feeling years later.
And now, to this day, I can feel it again. Some invisible protection telling me I can do this, fight this, and stay strong.
I saw this necklace weeks ago, told myself I didn't need to buy it. Didn't need to spend money on it. Then, I kept seeing this necklace. I was drawn to it - over and over again - by pure coincidence. So, today I bought it. I felt like this force I have been feeling for years needed a personification. Something I could grab and hold.
Here she is - my guardian angel...
I do, however, consider myself to be spiritual. To believe in something "higher" or "beyond" us. I don't know why, and I can't say how. But I know I believe. I'd like to think there is something or someone out there helping me, guiding me, even protecting me.
I have felt this feeling before - after Jack was born 5 years ago. I was 2 weeks post-partum and hemorrhaging, with no pulse, and unconscious. Raced to the ER, it was as if time stood still. My body stopped bleeding, my tiny baby slept peacefully while I had surgery - it honestly felt like divine intervention. Not necessarily God-like, but there was something there. Something so vivid I can recall the exact feeling years later.
And now, to this day, I can feel it again. Some invisible protection telling me I can do this, fight this, and stay strong.
I saw this necklace weeks ago, told myself I didn't need to buy it. Didn't need to spend money on it. Then, I kept seeing this necklace. I was drawn to it - over and over again - by pure coincidence. So, today I bought it. I felt like this force I have been feeling for years needed a personification. Something I could grab and hold.
Here she is - my guardian angel...
Thursday 13 September 2012
Life
“In three words I can sum up everything I've learned about life: it goes on.”
― Robert Frost
And so it does. For me. For us. Life's pendulum has swung full circle, and we are continuing past the diagnosis. I am now two weeks into my life changes - meditation, therapy, diet. I feel okay. I don't think about MS every second of every day. I can focus on other things, and focus on being "here." This "mindfulness" has become a necessity for me, albeit still a challenge. To take that extra second to to just be in the moment. To look at or listen to something beautiful. To feel beautiful, comfortable, and okay being in this body. It is not a natural sensation yet - more like a forceful conscienciousness.
I think this self-reflection is something we should all be doing.
Even 1 hour of meditation; even 1 hour of therapy. It all helps.
My emotions have still not settled completely. Honesty - I don't think my emotional cortex has even processed what is going on. I don't cry - which amazes me - I find I get more reflective and rational. I intellectualize things - I find out as much as I can about the medications, treatments, diets. Placing my finger on what I am feeling is hard. Sometimes there is nothing, sometimes there is anger, sometimes there is so much sadness.
The kids are adapting too: Jack has started, and loves, Kindergarten. Oliver, although desperately missing Jack, is enjoying being the centre of attention. His shy little smile reminds me of this all day long, and that makes me happy. I am loving the quiet days of just having one child to contend with. Home-based stresses have been reduced, which is a good start. One kid is so easy: sorry, Jack!
If I hadn't just been diagnosed with MS, I'd think this was just any other day. And I suppose that's a good thing!
― Robert Frost
And so it does. For me. For us. Life's pendulum has swung full circle, and we are continuing past the diagnosis. I am now two weeks into my life changes - meditation, therapy, diet. I feel okay. I don't think about MS every second of every day. I can focus on other things, and focus on being "here." This "mindfulness" has become a necessity for me, albeit still a challenge. To take that extra second to to just be in the moment. To look at or listen to something beautiful. To feel beautiful, comfortable, and okay being in this body. It is not a natural sensation yet - more like a forceful conscienciousness.
I think this self-reflection is something we should all be doing.
Even 1 hour of meditation; even 1 hour of therapy. It all helps.
My emotions have still not settled completely. Honesty - I don't think my emotional cortex has even processed what is going on. I don't cry - which amazes me - I find I get more reflective and rational. I intellectualize things - I find out as much as I can about the medications, treatments, diets. Placing my finger on what I am feeling is hard. Sometimes there is nothing, sometimes there is anger, sometimes there is so much sadness.
The kids are adapting too: Jack has started, and loves, Kindergarten. Oliver, although desperately missing Jack, is enjoying being the centre of attention. His shy little smile reminds me of this all day long, and that makes me happy. I am loving the quiet days of just having one child to contend with. Home-based stresses have been reduced, which is a good start. One kid is so easy: sorry, Jack!
If I hadn't just been diagnosed with MS, I'd think this was just any other day. And I suppose that's a good thing!
Wednesday 5 September 2012
Diet
It's time for me to make some changes in the food and supplement department. Step one was buying one of those pill organizers/dispensers. I got a flourescent purple one, of course. It's amazing how diet has been proven to affect our bodies, our minds, our lives. There have been clinical studies proving that MS patients who take high dosages of certain supplements can reduce the number of relapses they have and/or the severity of them. That's enough to kick-start me onto this bandwagon. Whether it actually works for me doesn't matter. Just being proactive creates my own placebo effect.
Two times a day, said flourescent pill organizer emerges - for 3 Omega-3 gels (gag), 2 calcium horse-pills, 4 vitamin D pills. Plus throw in all my regular stuff. It's a lot to remember.
I am lucky that most of the dietary changes that are recommended are things I already follow. I don't eat much red meat, I eat fish at least 2 times a week, eat beans, nuts, and leafy greens. I also don't particularly like dairy - yay me and the 'MS-reduced fat diet." I'll sneak in my peanut butter chocolate ice cream when I can. According to one article, I need to be "moderate" with my caffeine and alcohol consumption... (cough cough)...Some bad-kid-days it feels like I rotate from coffee to wine!
Some studies have shown a link between increased energy (MS patients typically complain of extreme fatigue) and a gluten-free diet. My Neurologist says this may not be applicable to me yet (you know, cause I am freakin' exhausted all the time anyway. Thank you children). But, I am going to monitor what I eat and start making some slow changes.
My injectable medication won't start for another few weeks, so for now, it's food and pills. And I need to remember to drink more water! If you see me - tell me that!
Two times a day, said flourescent pill organizer emerges - for 3 Omega-3 gels (gag), 2 calcium horse-pills, 4 vitamin D pills. Plus throw in all my regular stuff. It's a lot to remember.
I am lucky that most of the dietary changes that are recommended are things I already follow. I don't eat much red meat, I eat fish at least 2 times a week, eat beans, nuts, and leafy greens. I also don't particularly like dairy - yay me and the 'MS-reduced fat diet." I'll sneak in my peanut butter chocolate ice cream when I can. According to one article, I need to be "moderate" with my caffeine and alcohol consumption... (cough cough)...Some bad-kid-days it feels like I rotate from coffee to wine!
Some studies have shown a link between increased energy (MS patients typically complain of extreme fatigue) and a gluten-free diet. My Neurologist says this may not be applicable to me yet (you know, cause I am freakin' exhausted all the time anyway. Thank you children). But, I am going to monitor what I eat and start making some slow changes.
My injectable medication won't start for another few weeks, so for now, it's food and pills. And I need to remember to drink more water! If you see me - tell me that!
Sunday 2 September 2012
Staycation
It's been 1 night of complete alone-ness. It was time for me to pack a bag and head downtown to a nice hotel, to surround myself with my thoughts, and start this "dealing" process. I wanted to have time, sans-kids, to think about medication, appointments, and to start imagining life with my new reality.
Instead - how it seems to be transpiring - is time to enjoy myself - drink too much wine, eat too many doritos, watch too much Dexter. Classy, eh? And it's nice. I am not thinking too much about the MS. I am not thinking too much about my appointment with the nurse on Tuesday for my injection tutorial. It has turned into a soul-refuel, a chance to relax and unwind, and listen to the silence. This surprises me greatly. How have I managed to get to this mental space? Is it just the chance in location? The fact that it's just me here? No kids, no cooking, no cleaning? Yeah, probably. But I'll take it. I'll bask in it for just one more night.
So here I sit - in my giant king sized bed, with, yes, nine fluffy feather pillows. My view of the city, and the promise of an entre day to treat my soul.
This is a nice feeling.
Instead - how it seems to be transpiring - is time to enjoy myself - drink too much wine, eat too many doritos, watch too much Dexter. Classy, eh? And it's nice. I am not thinking too much about the MS. I am not thinking too much about my appointment with the nurse on Tuesday for my injection tutorial. It has turned into a soul-refuel, a chance to relax and unwind, and listen to the silence. This surprises me greatly. How have I managed to get to this mental space? Is it just the chance in location? The fact that it's just me here? No kids, no cooking, no cleaning? Yeah, probably. But I'll take it. I'll bask in it for just one more night.
So here I sit - in my giant king sized bed, with, yes, nine fluffy feather pillows. My view of the city, and the promise of an entre day to treat my soul.
This is a nice feeling.
Thursday 30 August 2012
The main event
Today I met my MS Neurologist. It was re-confirmed I have RRMS - or relapsing-remitting Multiple Sclerosis. It means, for now, the relapses will come and go. There will be good times and bad.
It was a surreal moment - sitting there in the waiting room - only steps away from my (old) workplace. Colleagues were racing too and fro, and I sat there, hiding behind a magazine, not wanting any encounters in the MS waiting room. This place that has been so familiar through work for so many years now seemed so distant and scary.
There was an unusual group of people waiting for these doctors - not all "classic MS-ers" like me - but people from all walks of life. Men, women, people from different ethnicities, those who could still walk, those who could not.
When my name was finally called - after waiting over an hour - I had a full work up and Neuro exam - over an hour with the Resident. Then came in Dr. MS - he was fitting me in as a favour, seeing as we both work in Neurology. He was amazing. We looked at my MRI - he showed me each and every lesion, describing it to me as if it was not something gross and horrific. We then talked medication - all the fun-ness of self-injection. He gave me a ton of reading material to take home, and then... he offered me a spot on his clinical trial. It is comparing a tried and true MS drug (injected 3 times a week, for the oh-so-low-cost of $30,000 a year - thank God for extended health insurance) and a new state of the art brain-child-drug. There are risks involved, of course, but huge potential benefits too.
I go back to meet the nurse and learn more on Tuesday. Until then - I have a LOT to think about and some BIG decisions to make.
Meanwhile - I am going to have another MRI done - to image my spinal cord to see if it has been affected yet. And I need a whole whack of blood tests - some even get sent to Japan to test for a rare MS gene.
Perhaps the most poignant moment though, came right as I was waiting for the elevator to leave. A man who had been in the MS clinic too started talking to me. He turned to me and said "how come you can still walk?" I didn't know what to say. I could see his left leg was limping and he could hardly walk. I told him I was just diagnosed and this was brand new to me. I was expecting him to tell me he's been battling for 10 or 20 years, considering the damage that was already visible. He turned to me and said "that was me a year ago. I have had MS for a year." That moment - that sad yet heartfelt moment - made me understand exactly how real this is. This is a fight. A fight with one's own body. And a fight we have no choice but to accept.
It was a surreal moment - sitting there in the waiting room - only steps away from my (old) workplace. Colleagues were racing too and fro, and I sat there, hiding behind a magazine, not wanting any encounters in the MS waiting room. This place that has been so familiar through work for so many years now seemed so distant and scary.
There was an unusual group of people waiting for these doctors - not all "classic MS-ers" like me - but people from all walks of life. Men, women, people from different ethnicities, those who could still walk, those who could not.
When my name was finally called - after waiting over an hour - I had a full work up and Neuro exam - over an hour with the Resident. Then came in Dr. MS - he was fitting me in as a favour, seeing as we both work in Neurology. He was amazing. We looked at my MRI - he showed me each and every lesion, describing it to me as if it was not something gross and horrific. We then talked medication - all the fun-ness of self-injection. He gave me a ton of reading material to take home, and then... he offered me a spot on his clinical trial. It is comparing a tried and true MS drug (injected 3 times a week, for the oh-so-low-cost of $30,000 a year - thank God for extended health insurance) and a new state of the art brain-child-drug. There are risks involved, of course, but huge potential benefits too.
I go back to meet the nurse and learn more on Tuesday. Until then - I have a LOT to think about and some BIG decisions to make.
Meanwhile - I am going to have another MRI done - to image my spinal cord to see if it has been affected yet. And I need a whole whack of blood tests - some even get sent to Japan to test for a rare MS gene.
Perhaps the most poignant moment though, came right as I was waiting for the elevator to leave. A man who had been in the MS clinic too started talking to me. He turned to me and said "how come you can still walk?" I didn't know what to say. I could see his left leg was limping and he could hardly walk. I told him I was just diagnosed and this was brand new to me. I was expecting him to tell me he's been battling for 10 or 20 years, considering the damage that was already visible. He turned to me and said "that was me a year ago. I have had MS for a year." That moment - that sad yet heartfelt moment - made me understand exactly how real this is. This is a fight. A fight with one's own body. And a fight we have no choice but to accept.
Tuesday 28 August 2012
Summer's end
The end of summer brings catching up with friends, telling tales of warm adventures and work-escapes. Tonight I saw an acquaintance who was telling me all his exciting summer news... a baby on the way, a new job, a new home. When he looked at me and said "and what's new with you?" I didn't know what to say. My insides felt like screaming "I HAVE MS, and it sucks," but I didn't. I nodded along to his stories, happy for him. But inside, I was wishing it was me who had happy, exciting news. Something to be proud of, something to be excited for. Instead, I get to be excited that I have a Neurologist appointment this week, that I get to start discussing meds and learning how to inject myself. I get to think about MRIs and drug side-effects and when this blasted disease will strike again.
J starts Kindergarten next week, and as excited I am about full-time school, I am also a little nostalgic about our last 5 years together. This is the start of many years to come - his education...perhaps the start of his occupation. His life. I want to be excited for him, I want to encourage him, and be there for him in everything he chooses to do. But I worry this sense of "it's not fair" is going to take a greater hold on me than I want.
Although those feelings are not just going to disappear, perhaps I can shove them in my back pocket for a while.
I need to get proactive. Even if I need to spell it out to myself every single day.
I am going to start meditation class again. I am going to start weekly therapy again. And without getting too New-Yearsy with the resolutions, I am going to surround myself with bath bombs, and wine, and good food, and stop yelling at my kids so much.
J starts Kindergarten next week, and as excited I am about full-time school, I am also a little nostalgic about our last 5 years together. This is the start of many years to come - his education...perhaps the start of his occupation. His life. I want to be excited for him, I want to encourage him, and be there for him in everything he chooses to do. But I worry this sense of "it's not fair" is going to take a greater hold on me than I want.
Although those feelings are not just going to disappear, perhaps I can shove them in my back pocket for a while.
I need to get proactive. Even if I need to spell it out to myself every single day.
I am going to start meditation class again. I am going to start weekly therapy again. And without getting too New-Yearsy with the resolutions, I am going to surround myself with bath bombs, and wine, and good food, and stop yelling at my kids so much.
Monday 27 August 2012
The kids
This is my first week being a full-time Mom. Of two very busy boys. Crazy how the universe decided it would also be the week I'd be diagnosed with MS and my life would go into an emotional frenzy.
My energy is down, the motivation is lacking. There have been far too many trips for Timbit bribes to keep the boys quiet. I feel like I need to sit and be alone with my thoughts for a week. I need to pour over every detail of what I am feeling, write it all down - word by word. I need to nap. I need to savour a quiet cup of coffee with my journal.
I don't know why my boys are stressing me out so much, They are familiar creatures to me - I know their habits, their schedules, their breaking-points. They are like extensions of me. But I feel like I cannot concentrate on their needs and my own right now. After the zillionth "I'm thirrrrrrsty!" or living room wrestling match-turned-injury, my patience snaps and I find myself wishing I was alone on a deserted beach somewhere.
Then I begin to wonder if I should explain to my oldest, who is 5, what is going on. How does that conversation go? "Mommy has something wrong with her brain and you need to stop stressing her out!"
Life with kids is constant and I wonder how long it will take before my relationship with them feels "normal" again? When I feel I can stop thinking about this shitty MS and start thinking about them? Kindergarten starts in a week - I'll only have one to contend with then (at least from 9-3!).
Until then - Medication? Wine? Babysitters? All of the above, I think.
My energy is down, the motivation is lacking. There have been far too many trips for Timbit bribes to keep the boys quiet. I feel like I need to sit and be alone with my thoughts for a week. I need to pour over every detail of what I am feeling, write it all down - word by word. I need to nap. I need to savour a quiet cup of coffee with my journal.
I don't know why my boys are stressing me out so much, They are familiar creatures to me - I know their habits, their schedules, their breaking-points. They are like extensions of me. But I feel like I cannot concentrate on their needs and my own right now. After the zillionth "I'm thirrrrrrsty!" or living room wrestling match-turned-injury, my patience snaps and I find myself wishing I was alone on a deserted beach somewhere.
Then I begin to wonder if I should explain to my oldest, who is 5, what is going on. How does that conversation go? "Mommy has something wrong with her brain and you need to stop stressing her out!"
Life with kids is constant and I wonder how long it will take before my relationship with them feels "normal" again? When I feel I can stop thinking about this shitty MS and start thinking about them? Kindergarten starts in a week - I'll only have one to contend with then (at least from 9-3!).
Until then - Medication? Wine? Babysitters? All of the above, I think.
Friday 24 August 2012
Symptoms
An MS diagnosis can be a waiting game. Symptoms can be around for years with no diagnosis
or even an explanation. And that is how
it began for me. Three years ago I had
what was thought to be an odd reaction to a flu shot. It was an incredible autoimmune response
within my body that caused tingling and numbness in my arms and legs – it lasted
over a month. I went for Neuro-consults,
but because it was my first episode of neurological symptoms, it was brushed
off as “one of those thing.” Eventually,
the symptoms went away, and I forgot about it.
It was just one of those things.
This summer, while vacationing in the UK Guernsey ,
who diagnosed it as optic neuritis. Slowly
my vision returned, and is now at about 95%.
I have lost some red perception, and there is permanent vision loss, but
for the most part, I am lucky.
Once this memory-inquisition begins, 2 and 2 start equalling
4. Signs. Symptoms.
Then you go see a Neurologist. I
was told before I even had the MRI that this was probably MS. There are few other things that these symptoms
would be indicative of. In order for MS
to be considered, there need to be 2 neurological attacks, separated in
time. Hmmm… Check. Classic symptoms? Check.
Then they look at the demographics usually involved in diagnosis. Female?
Check. Age between 30-50? Check.
Of Northern European descent?
Check. Light hair and light eyes? Check.
For once in my life, I was not a medical mystery. I could check all the boxes.
So, off I went for my MRI.
Thank God I have worked in Neurology for the past 7 years and have some
wonderful, caring colleagues who like to help.
Within a week I had my MRI and
had my results. It’s a moment I will
never forget…
“There are more than
10 lesions on your brain.”
This MS has been around for a while. These lesions can be hard to pick up via MRI
unless they’ve had time to develop. That
being said – lesions can be present without physical symptoms. So who knows how long this has been within me
– what else it’s caused? MS can cause
balance and coordination problems…. So did it factor into my broken ankle
earlier this year? Who knows. No one will ever know. It’s a waiting game, this disease – there is
no way to predict what will happen next, or when. It’s a Catch-22 – of the least fun kind.
Thursday 23 August 2012
Definitions, rules, and the ugly cry
Now that "the big reveal" has happened, so does the influx of emotion. Face-to-face encounters over the past days have been prefaced hurriedly by my shouting "NO tears, NO hugging!" Normally I love a good cry and an even better hug, but Sarah-with-the-ugly-cry has surfaced, and she ain't pretty. She does much better in private. And sometimes, that is how this process is going to have to work for me - at least for now. Sure - I am writing about this, and sharing it with whomever cares to read it. But my lovely Samsung laptop provides the best invisible layer of protection that stops the ugliness in me from materializing.
But please, don't pretend this isn't happening to me. Don't tell me "I'll get used to it." Tell me a joke (reducing stress is key!), take me out, write me an email, tell me what's going on in your life. MS rule #1: no treading on eggshells - talk to me, ask me things. MS rule number #2: please refrain from the "at least it's not cancer" ideology. I do, of course, understand that this could be a lot worse. But also, this was not something I was high-fiving my pals about. "Yes! I have MS!"
There will always be something worse, for each and every one of us. Always.
If you want to read more about the lovely goings-on of MS, this is for you:
http://mssociety.ca/en/default.htm
But please, don't pretend this isn't happening to me. Don't tell me "I'll get used to it." Tell me a joke (reducing stress is key!), take me out, write me an email, tell me what's going on in your life. MS rule #1: no treading on eggshells - talk to me, ask me things. MS rule number #2: please refrain from the "at least it's not cancer" ideology. I do, of course, understand that this could be a lot worse. But also, this was not something I was high-fiving my pals about. "Yes! I have MS!"
There will always be something worse, for each and every one of us. Always.
If you want to read more about the lovely goings-on of MS, this is for you:
http://mssociety.ca/en/default.htm
Wednesday 22 August 2012
D for Diagnosis
I saw the lesions on the MRI before the doctor could start pointing them out, and I knew exactly what it meant. MS. Multiple Sclerosis.
Life is surreal sometimes. For just a moment - just that one moment - you are allowed to leave your body, try and take it all in - take a deep breath - and then return.
When you see your brain, amplified by light and imaged into sections, you turn sort of numb. "It's not really my brain" you think. But alas, it is. And there they are - those little bean-shaped lesions. Waiting to kick into full-MS-mode.
And then what? Cry, scream, freak-out, pretend there is nothing wrong. Yup - all of the above.
But then, a day or two passes, and it's time to figure this thing out. This "Jumanji-disease" - this uncontrollable gambling-game dysfunction that likes to strike when unexpected. It prefers females, usually 30-40. Usually young Moms. Just like me. He's (I have decided that MS must be male) a fickle one.
So now, the journey begins. And I have no choice but to fight it.
"We don't know how strong we are until being strong is the only choice we have."
Life is surreal sometimes. For just a moment - just that one moment - you are allowed to leave your body, try and take it all in - take a deep breath - and then return.
When you see your brain, amplified by light and imaged into sections, you turn sort of numb. "It's not really my brain" you think. But alas, it is. And there they are - those little bean-shaped lesions. Waiting to kick into full-MS-mode.
And then what? Cry, scream, freak-out, pretend there is nothing wrong. Yup - all of the above.
But then, a day or two passes, and it's time to figure this thing out. This "Jumanji-disease" - this uncontrollable gambling-game dysfunction that likes to strike when unexpected. It prefers females, usually 30-40. Usually young Moms. Just like me. He's (I have decided that MS must be male) a fickle one.
So now, the journey begins. And I have no choice but to fight it.
"We don't know how strong we are until being strong is the only choice we have."
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