SO…March 2010, the time I was hit with my diagnosis harder than a Transport Truck running a red light… 🚦🛑🚛
but THEN WHAT???
I was only told by my family doctor that there were treatments available, but I was never told what they were… and to be honest, I didn’t really want to know at that time.
Learning about my diagnosis alone was totally overwhelming. I didn’t even know what MS was..but I knew I had a LOT of research to do.
It hadn’t sunk in yet…in my mind I was still fine.
I felt fine, I looked fine, I was going on with life, working full-time feeling perfectly FINE…
But I couldn’t run away from the fact that deep down I knew I wasn’t fine at all.
I had just found out there was an invisible MONSTER that had ‘weaseled’ its way into my body… an UNWANTED house guest who had arrived totally unexpectedly and one who was here to STAY.😡😥
The day after finding out about my diagnosis, I just continued on with life as if nothing had happened. I got up, went to work, never said anything to anyone and that was that. I continued doing this day after day, month after month, until the time came when the inevitable could no longer be avoided. The ‘Unwanted House Guest’ was starting to reek MAJOR havoc in my life.
Although my approach was to continue living life as I was pre-diagnosis, I didn’t just completely ignore it…I did do some research, even though I was TERRIFIED about what I would find.
I’m positive I’m not alone here… I’m sure many of you at some point have felt completely overwhelmed by an obstacle in your path, or a full out war called upon you. A war you KNOW you need to win, one battle at a time.
Often it feels so overwhelming that we don’t even know where to begin…But more often than not, the first place we start is ‘Google’.
I’m not going to say this is a good thing or a bad thing, because it all depends on your personal situation. Google has some great information BUT it also has information that can be somewhat unreliable. And when we are trying to find answers to whatever it is we are facing, it may just be the perfect gateway to CONFUSION.
We also hear ideas from friends, family, quite possibly people we don’t even know…
Then we have our Family Doctors, Naturopaths, Nutritionists, Acupuncturists, Physiotherapists, Chiropractors, Psychologists…a whole team of support available to us. But sometimes we don’t even know what we need.
I know it can be confusing, and I know it can be overwhelming… Trust me I get it. I have been there. I’m STILL there…
I have been the one staring at the Google screen thinking ‘this is only making me feel worse about myself, reading about the possible prognosis of ending up in a wheelchair or yet worse, on a feeding tube… Reading about what seems like 5 million choices for disease-modifying drugs all of which slowly harm your organs and can possibly even kill you one way or another…
But somehow we are supposed to choose the avenue that’s the best for our health and our situation. How can that be so simple???
Well the answer is it’s NOT…And often this leads us to indecisiveness, something we feel when faced with too much information or when the road ahead seems FAR too tough…
BUT that right there… That feeling of indecisiveness…is very VERY dangerous. Allowing ourselves to feel DEFEATED before we even begin, is a BIG No-No!!
Throughout my own journey, fighting my own daily battles… I have learned that regardless of how heavy everything weighs on us, we MUST fight our way through the sense of burdening suffocation. And once we find our way to the top, we MUST take a big deep breath! We need to pause for a moment, give ourselves a little pep talk, pump up our tires, and say to ourselves OUT LOUD… “I can do this!”
We CANNOT decide to just keep truckin along merely EXISTING, hoping and praying that MIRACULOUSLY our state of being will change.
Yes I do believe to a certain degree that miracles are POSSIBLE, but my FAR more unwavering belief is that 99.9% of the time… CHANGE requires an IMMENSE amount of determination, persistence, optimism, self advocacy, and A LOT of Hard Work!!
It wasn’t just by chance that I ended up in this Stem Cell Trial in Ottawa. I feel extremely grateful for this opportunity, but at the same time I feel accomplished and proud of myself because I know how much effort went into sending emails, phone calls, researching about the trial, calling again and again and again and then more emails, more follow-ups, networking with other doctors … A LOT of Hard work as an active participant in my own journey.
The ‘ball starts rolling’ when we take that first step towards change. We CANNOT expect everybody else to find the answers for us, it simply won’t happen. We MUST become self advocates, because it is far too risky to rely on miraculous recoveries.
When I was first diagnosed with MS I had no idea where to begin. I was told I could go on a disease-modifying drug, the ones that are around $40,000 and extremely toxic to the body…. I was told they COULD slow the progression of the disease, but that the decision was totally up to me.
My decision was to NOT go on any of those drugs, because at the time of diagnosis, my Neurologist suggested I may want to stay off of them because of how toxic they are, AND because of how well I was doing. Fast forward 5 years… and I can’t help but think about whether or not I made the wrong decision. If I would have just gone on one of those drugs, would I still be walking?…would I still be working?? Would we have a 2nd child? A sibling for Landon???…. POSSIBLY!…but hindsight’s 20/20 right?
I decided to take a more natural approach through diet and supplements. No one made that decision for me. With the support of my family, and the guidance received from my Naturopathic Doctor, I made a decision. Was it the best one I could have made? I have no idea…
What matters most is that I made one! I didn’t just shut down, telling myself how much my luck sucked, deciding not to do anything about it. I made a decision…I took the first step, and I took THAT step because I honestly and truly believed it was the best thing for me and my health at that time.
Since the years have passed, my illness has CLEARLY progressed. If I knew the answer as to WHY this is STILL happening, and most importantly how to stop it, I’d be rich!! but I don’t know…
What I Do know is that I certainly have NOT done everything perfectly. I started that diet out with a bang! but trust me I slacked at times…I ‘cheated’… and there were definitely times I missed doses of my supplements. I still didn’t have any symptoms of the disease other than some mere tingling in my arms.. SO when my friends all wanted to have chicken wings, pizza and beer…so did I! I didn’t want to be the one who was any different. It was hard to imagine what was happening inside my body because it was all 99% asymptotic and 100% invisible.
However, it was that 1 percent that acted as a constant reminder that I was battling something larger than I even knew.
As my symptoms worsened, I buckled down on my diet, but it didn’t help. Maybe because it needed some ‘tweaking’? OR maybe because it was a ‘little too late?’
I unfortunately don’t know the answer to that question either. But what I do NOW believe, is that whatever I DO or DON’T put into my body, HAS to make a huge impact in terms of the way it performs and reacts. It simply just MUST be that way… There’s NO WAY you can load yourself up with unhealthy foods and expect to become a healthier person. 👎
As my journey has continued, facing and enduring many battles, my plan of attack has taken many different turns. BUT the one thing that has remained constant, is my commitment to a disciplined health regime (99.9 percent of the time)
As we all know, nothing or no one can be perfect, but with mindful and positive intentions at the core of everything we do…we set ourselves up with unlimited potential for success.
SO, Getting back to the beginning of this post…
Whatever it is you are battling or enduring, just make sure you take the step… the FIRST step. No matter what it is or what it entails, it is a step towards self advocacy. Things can always be tweaked or changed but nothing can happen until you take that step. And as I said earlier, don’t just take it for the sake of taking it, take that step with purposeful intent and the belief that it will lead you to success…
And if you don’t get there right away, take the second, third, fourth and fifth steps all the while knowing that with each additional step you are forced to take, your level of resilience is developing rapidly…
Whether you are facing something now, or whether you will be confronted with something soon…Don’t wait for that miracle…don’t sit back and hope that life will lead you through a desired path…
Instead, become an ACTIVE participant in your own journey towards success. Continue to take all the steps needed, perhaps more steps than you even think possible…but take them.
Take each and every one of them in order to build the strength, determination and perseverance needed to stop WAITING, and to start BECOMING the Miracle you’ve been wishing for 👏💗👊
#selfadvocacy #takethestep #mindfulness #beyourownmiracle #MSawareness #motivate #inspire #burnfireburn
Every fresh start is a new beginning. Or maybe it’s vise-versa? I dunno… but either way, it’s what I keep telling myself because what’s the alternative???
NOTHING…nothing but a steep and steady downhill tumble to SELF distruction. 👎
This Journey I’ve been on for the last 7 years has been a crazy adventure with limited ‘down’ time…For if I’m not involved with some new type of drug or alternative therapy, I’m actively seeking one with my whole SWAT team fully engaged.
Over the years many people have said to me “Gillian, I just don’t know how you do it” OR “You are SO strong.” but up until recently I think I may have been selling myself short…because I always just thought ‘Well I have no other choice…or ‘you would do the same if you had to’…OR ‘you become strong when STRONG is your only choice…‘
And although I still believe those things to a certain degree, I NOW have a sneaky suspicion that I may be stronger than I ever thought.
When I think about it, it probably would be relatively easy to just accept the inevitable and become angry for the cards I’ve been dealt. (And trust me there have been MANY moments of anger expressed..)
I do think it would also be relatively easy to go on with life, merely ‘existing’, or to shut down completely and become a recluse…but THAT has simply NEVER been part of my game plan…
All that being said, I didn’t just become this way straight out of the womb. I’ve had strong and resilient parents who have raised me, tough experiences in my life which have shaped me, and of course an EXTREMELY annoying and constant thorn in my side that has forced me to learn the TRUE definition of persistency:
When I look at the quote above, I can’t help but give myself a little credit and my family and friends a HUGE ‘thanks’ for helping me to check all four of those boxes, as I’ve stumbled my way through this journey so far.
I may feel the furthest thing from confident, strong and stable physically… but in my mind I could not be more sure of my ultimate goal.
I know that settling for the version of myself I am now is okay for the moment, because this is the moment I am living due to circumstances that are out of my control.
BUT this moment won’t last forever and it won’t be the version of myself I end up. At least that is my PLAN… I will do everything in my power to become better than I am now, one tiny step at a time.
I knew this would be my approach to defeating this deamon from the moment approximately 4 years ago, when I decided I simply CANNOT live this way for the rest of my life.
It wasn’t getting better on its own, and I knew that self-advocacy was going to play a large part in mine and my family’s life.
MS is such an unpredictable disease, so we knew that the first treatment I tried was likely not going to be the last. There are many things about my illness that doctors and researchers still don’t know. They haven’t yet discovered the BEST treatment and there’s nothing yet on the market that reverses the debilitating permanent damage that is left behind after a terrible attack.
If there were one of these options available, my life would likely be a lot easier… But until that time, my family and I must continue to search for the next best avenue or turn to take on the everwinding road we are travelling.
I feel like I’m on a pretty promising path right now with the Stem Cell trial, and don’t get me wrong I am extremely grateful to be one of only 20 chosen… BUT until I get confirmation through improved symptoms, our eyes and ears will always remain open for other promising therapies and up-and-coming treatments.
As I write this post I somewhat wonder for a split second if I am even ‘eligible’ to speak about something that has not yet happened… THAT being my ultimate success…Because often when you read about other people’s success, it’s after it has already occurred.
In my case, it is all still a hope, a belief, and a solid plan of action… But then that split second of mindful insecurity is shattered to pieces when my inner strength outshines all of my doubts.
To me, it’s okay that I haven’t reached my ULTIMATE success yet… because along the way I have had many mini successes.
THOSE successes are what motivate me to push FURTHER, fight HARDER and believe DEEPER than ever before that the persistent determination which runs deep within me will one day pay off…and all I have hoped and fought for all these years will finally come to fruition.
If you’re reading this right now and battling something of your own, REGARDLESS of what it is… one thing I have learned along my journey so far, is that you have to be a little bit FEISTY and a lot STUBBORN. (neither of these things to the point you lose friends 😜)… But to the point where you build an unwavering belief that QUITTING is not an option..
And when you look at your journey and realize you have not YET made it to your desired end point or reached your ultimate success… Just think of it as taking many ‘Pit Stops’ along the way… Pit Stops to allow yourself to refuel and get back on the road to whatever it is you are becoming.
Trust me… ‘Pit Stop’ is my middle name. I’ve made MANY of them. Many which at one point I thought of as failures, but now I see as stepping stones to something greater… Something I may not even know is coming yet, but something I can only hope and believe will give me relief to my symptoms, and highlight the path to a better future.
And as I can’t help but think about the POSSIBLE Stem Cells I may receive in July, I also think back and remember all the mini pit stops which I’ve made so far along my EVERWINDING road.
In my future posts I will discuss and outline EXACTLY what all my ‘pit stops’ have entailed… however right now, I can’t help but feel excited for the possibility of a better future which may be right around the corner.
BUT then again, all that excitement I feel is also slightly shadowed…Because there have been SO many other times I got my hopes up in believing (full force) that other treatments would be the key to my improved health.
It is those times which have now become my stepping stones, and have also taught me that when granted an opportunity to try a new and cutting-edge therapy, to first off be extremely thankful, while at the same time become CAUTIOUSLY optimistic, keep my crazy emotions grounded, and ALWAYS always ALWAYS stay the course…
REGARDLESS of the terrain. 🏔️ 👟 😎
From the moment you decide it’s time to expand your family, whether for the first time or the 5th, let’s be honest, it’s an emotional rollercoaster from the beginning. For some of us it’s the most beautiful journey we will ever find ourselves on, but for others, it’s by FAR the most challenging, stressful and endurance testing thing we will ever go through. I most DEFINITELY fit in the latter category…
Here’s the first part of my story about how the ‘2’ of us became the ‘3’ of us, and all the challenges endured while navigating through motherhood with a disability.
As I mentioned in one of my earlier posts, deciding to have a child was everything BUT an easy decision. My husband and I literally discussed all the pros and cons for an entire 2 years and also consulted with my parents regarding the life changing decision we were facing.
For me, it was a no brainer… I HAD to be a mother. This was something I had envisioned ever since I was mature enough to realize just what being a mother meant to me.
When my husband and I first got married, I had already been diagnosed with MS, but I had not one single symptom other than the tingling in my arms. Therefore in my opinion, this was the absolute best time to try for a child. But after talking with my husband and parents, I was brought back down to reality as we discussed how a future could look like for a mother with MS.
The images were far from ideal… In fact, the images looked exactly like how my life looks now…
A mother who struggles daily to complete the simplest tasks like getting my son out of his crib, getting him a glass of water, a yummy snack or changing a poopy diaper… a mother who struggles daily to get up and go without severe pain and tightness so bad it’s taxing just to breathe (they call this symptom the MS ‘hug’…..seriously!!??😬)…A mother who can’t walk more than a few feet without grabbing onto walls and while doing so becoming so fatigued that JUST standing becomes the ultimate challenge.
I, WE, had envisioned all of this before it even happened.
So, We decided to wait…. but only 4 months after we said “I Do”, I started having symptoms of dropped foot. At that point it was still not a HUGE issue… But those symptoms quickly spiraled out of control, and in just a matter of 2 short months I could no longer play tennis or any other sport, and could no longer do a laundry list of simple things I took for granted before I could no longer do them.
We kept thinking this HAS to get better… I kept thinking if I do exercises and become stronger then I would still be able to handle the physical strain of pregnancy. But the problem with that idea was EVERYTHING.
I could not physically do the exercises…Trust me I tried…I tried Very VERY hard. I probably tried harder than I should have. The physical exertion of energy it took me to just do 2 squats left me feeling sick to my stomach, and the increase in pain it caused was torturous.
SO…We waited and waited and waited some more, but nothing got better it only got worse…and EVERY single time I thought ‘okay this is the worst it’s going to get’… it proved me wrong and stepped it up a notch.😭
In the meantime, I was waiting to be accepted into the MS Clinic in Hamilton, which had a 9 to 12 month waiting list. But thanks to my family doctor I was able to get in sooner than we thought. After meeting with the Neurologist for the first time, he decided I needed a 5 day course of high dose IV steroids to reduce the inflammation in my body. Nobody knew how much this was going to improve my symptoms, but we all hoped for the best and crossed our fingers and toes. 🤞
The good news is it helped immensely, and for the first time in over a year I went out for dinner with my family. I still remember that day with crystal clear accuracy. But just as quickly as I got better, I got worse again. 😓😡
Let’s for a moment, just take a short scientific/medical detour…
Most people with MS have times of relapses and remissions… And during the times of remissions most people regain some or all of what they lost during the relapse. But unfortunately for me, it has not been that way…and what I recently learned from my Neurologist in Ottawa, is that way back then… I had a MASSIVE attack on my spinal cord to which I never regained function.
It’s a tough pill to swallow knowing that ONE single attack is the root cause of all the suffering I have endured for the past 5 years…😡
But now let’s get back to when or what the turning point was that made us jump with ALL feet in and try for the most amazing child we could ever ask for. ♥️
I guess the turning point was when we both decided that we were strong enough emotionally, mentally and (one of us) physically to push through all the barriers placed in front of us. We knew it wasn’t going to be easy…We knew some people would probably think we were crazy, because for so long we had lived the life of MS and knew how difficult it was just to get through each and every day. But in the end the burning desire to have a child shone way brighter than the doubts that were dimming its light. So many things had already been ripped right out of our hands and this was NOT going to be another.
On April 4th 2014, we found out we were expecting, and were we excited???? Absolutely! But when you are forced to navigate through life with something so challenging clinging to your every single move, all that excitement comes with a whole LOT of fear!😨
Believe it or not, ALL of this was just about getting to the DECISION to have a child, which turned out to be the BEST decision we have EVER made.
In my next post I’ll talk about the major challenges I faced throughout my pregnancy (ones WAY bigger than I ever saw coming), as well as the daily adversity I must overcome being a mother with a disability.
But As I wrap up the FIRST part of this story, here’s a little food for thought..🤔
When you feel like you can’t do something, or when you think something is going to be WAY too hard, and just the DECISION feels overwhelming… Just remember all the battles you’ve already won in this life, and when you look back on your track record of getting through tough times, I can guarantee you it looks pretty rock-solid!💪
You are still here because of the strength, perseverance and resilience you’ve built during your toughest battles and your biggest wars.
So…Think back as far as you need to go, and if you happen to come across something you’ve written off as being IMPOSSIBLE, it might just be worth another look 🔎☺️
#personalstength #personaljourney #strongerthanyouseem #MSawareness #mamawithMS #persevere #burnfireburn
In my last post I talked a lot about what remained ‘static’ in my life since that day 7.5 years ago… And I was crystal clear about what lead to the creation of my new ‘normal.’ But when it comes to everything that has drastically changed… I barely touched the tip of the iceberg… So here we go!
Sometimes it is still crazy for me to believe that everything in my life has been effected because of one simple diagnosis, given on one simple day… But the problem is this illness is not simple at all…in fact it is the furthest thing from simple.
The brain is the most powerful tool in the human body, and this illness has the spot on ability to completely and utterly MESS IT RIGHT UP!! 😡 and not only the brain… But the spinal cord too… My BIGGEST nightmare! How can one illness have so much power? That is something I have always wondered…😤
Throughout the years of my diagnosis I have gotten to know quite a few people who have MS or who are strong supporters of someone battling their own Journey with MS… and there are NO two people that have the same disease course. In fact there are no two people that really are even close to having the same disease course. This is partially what makes understanding MS so complicated.
Although MS research has come a long long way, there are still so many unanswered questions. But of course if we had all the answers… We’d have a cure.😓
There are so many “Why’s”….Why for example am I the one physically disabled from the torso down.. and not the person who has been left blind? And why is the person who has been left blind not the person who struggles every single day to remember the simplest details? And why is the person with such cognitive difficulty, not the person who struggles every single morning just to button up their shirt?
The answer to the above is that no one knows…and this is pretty much how life goes in general… no one really knows why bad things happen to good people and vise-versa… but the one thing I can tell you with 100% certainty, is the grass is rarely greener on the other side… And I will never wish to trade places with anyone… because most often our own problems are the best ones to have.
That being said I DO wish I could trade places with myself… go back to my old ‘normal’…
I yearn so badly for the person I once was and the life I once lived. It never ever gets any easier to remember how easy it was to complete a simple task, how easy it was to get up and get dressed and start the day, or how easy it was to step off of a curb and walk up two steps, how simple it was to walk through sand, snow, grass, on top of cobblestone or simply just on my own hardwood floor…how easy it SHOULD be to put one foot in front of the other😬… how GREAT it felt to just be able to slip on a pair of flip-flops or upgrade to a pair of heels, and just wear whatever the heck I wanted! … To never have to worry about what shoes to wear with an outfit, how it didn’t matter how heavy the shoes were, and how I could actually wear a good quality pair of shoes instead of the lightest things I can find at Ardenes 😣…
How I never even stopped for a second to think about how little effort it took walking to the bathroom, because it was such a “second nature” kinda thing…or how my body once felt without severe nerve pain and out of control spasticity weighing it down every single day…how enjoyable it was to play hockey, soccer and tennis, and how enjoyable it was to play in Tennis Tournaments with my husband… The tennis coach I met and fell in love with at our local club almost seven years ago…
AND most recently I can’t help but envision what it would be like to pick up and carry my own child, something I had envisioned long before MS, but never had the ability to do..
ALWAYS wondering how amazing it would be to kick the soccer ball in the backyard with Landon, or to teach him how to skate… How easy it SHOULD be to SIMPLY get him a glass of water, let-alone all the other things that mama bears need to do…😘
The list goes on and on, and like I said it never gets easier to remember or envision, and the desire only Burns deeper…
BUT…the crazy thing about all of this is… it’s THAT burning desire which we need to FIGHT…to find answers, treatments, our next Avenue, plan of attack, or the next road to travel down…as we continue along this crazy journey of relentless optimism.
It doesn’t matter what your journey is or what battle you are facing. It doesn’t have to be MS or any other type of disease. It may be something totally unrelated to Health and Wellness.
MAYBE it’s something to do with your career path, family life, personal growth or any other type of Journey you may find yourself on … Whatever your journey is, just make sure the fire 🔥inside you NEVER dies…
And if you happen to find yourself in a situation similar to mine, please take comfort in knowing that by remembering all of the good that once was… It doesn’t mean we are dwelling on the past. It simply means we have the courage, determination, faith, and perseverance to never ever give up on our dreams. It means we have the ability to reminisce, hope and believe that we will be better than what we are now, and closer to what we were then.
It means we have the strength and ability to let out ALL our emotion through one SOLID cry, 😭 and then jump off the bench and right back into the game! 😎💪♥️
#nevergiveup #keepthefaithalive #burnfireburn #putmeincoach