2.5 years in the making and the day has finally arrived!
My book “The Girl In The Wheelchair: It’s Not That Bad” has been published and now available through Amazon!
(Please see link below)
The e-book edition will be available in approximately one week through Kindle.
A virtual launch party will be taking place soon. Please stay tuned for those details!
For those of you wanting a signed copy, please let me know once you receive your book and we can definitely arrange that. For those of you not comfortable ordering through Amazon, please let me know and I can get a copy for you.
A huge thanks to those of you who have already purchased a copy and for those of you who will purchase one in the future. I hope that in some way, all or most of you will be able to relate to a part of my story.
(Please also note there is a book with a similar title called “The Girl in A Wheelchair” So when ordering, please make sure to double-check the cover and author)
By sharing this post, you will help me immensely in spreading the word about my book. Thanks so much for all of your support in this continued and exciting part of my journey! ✍️📒🎉
#thegirlinthewheelchair #mybook #mystory #author #published #accomplished #milestone #proud #emotional #timetocelebrate
Dear my sweet baby boy,
From the moment you were only a figment of our imagination, I knew things would be different for you…
After your daddy and I got married, it became a long debate whether we would have you or not, one of over two years actually.
I knew for the longest time, since I was barely an adult myself, that one day I wanted a child just as perfect as you.
For your mommy, it was a non-negotiable, but there was a barrier placed in front of us, making the biggest decision of our lives also the most challenging.
We went back and forth between wanting you so badly, to then wondering if we were being fair to you. We didn’t know how much my condition would have a negative impact on your life, and if there was one thing we knew for sure, it was that we wanted you to have the most fabulous life possible.
I wanted you to grow up having access to all the things I had in my childhood… Involvement in sports, a loving family, and parents who could be active with you until past the point of your adulthood.
We knew without a doubt that we could nail the first two things on that list. We knew you would be loved beyond measure by your grandparents, aunts, uncles, and countless friends, and we knew we would be able to expose you to soccer, tennis, and almost any other activity that spiked that little interest of yours.
However, the last thing on that list was one we were only half confident about…
We knew that unless something unforeseen happened, your daddy would be the star of “active parent” show, and mommy would merely be cheering from the sidelines. This my love, was why the decision to give you life was filled with so much hesitation.
I knew how badly I wanted to be the co-star with daddy. I wanted to be the very BEST mommy you deserved and I wanted to be able to do everything that most other mommies could do.
I wanted to be able to hold you while I walked and twirl you in the air while I listened to your ever sweet giggles.
I wanted to be able to take you for walks as many times as you enjoyed, and I wanted to be able to nurse you, as that’s what I heard would be the best for you.
I wanted to be the one who could take care of you more often than not, and I didn’t like the thought of not being the first one you looked for when you needed something.
It was scary knowing I would have to ask for so much help, and that I wouldn’t be able to get to you before every little stumble, or to halt a gummy bear going directly into your mouth after hitting the floor.
It was upsetting knowing I wouldn’t be the “supermom” I once thought I’d be.
It was very difficult knowing I wouldn’t be able to make you every bottle, feed you in the night, conquer all your stinky diapers, or wipe away all your tears…
It was absolutely heart-wrenching to know I wouldn’t be the one to teach you how to skate, how to swim, how to kick a ball, or to simply play chase with you and daddy in our beautiful backyard.
I knew how many things I would miss out on doing with you and for you, and I was absolutely certain there would NEVER be a day I wouldn’t wish I could do more.
BUT the thing is my dear, these were all thoughts I had before I actually became a mommy… YOUR mommy that is…
All the wondering and hesitation finally came to a point when we realized that no matter the hurdles or obstacles thrown our way, and despite knowing how difficult it would be, we knew we just HAD to have you. We knew you belonged with us.
All those prior thoughts were ones I had BEFORE I got to see your adorable little face and feel your itty bitty body for the very first time.
They were thoughts I had before I found out for REAL how truly amazing you were, and were thoughts I had before knowing how much you would change my perspective of “Mommy-hood.”
On January 2nd 2015 at 4:43 am, after 2.5 years of indecision, 9 months of complete mayhem and 18 hours of NATURAL labour, YOU, Landon Fernando Cruz, changed my entire world.
The moment they laid you on my chest and I heard your powerful cries for the first time, there were no more thoughts about what COULD be and instead only thoughts of bliss, love and disbelief that you were finally here.
It was no longer about what could possibly happen, it was about what WAS happening and our new reality evolving.
All the moments I imagined being difficult were just that…DIFFICULT…but you made it so much easier. In just the first year of your life, you showed signs of empathy, intuitiveness, and compassion. You were seriously the BEST baby EVER.
Instead of fighting the endless list of things I couldn’t do for you, I learned to embrace the help offered. Your Grandma and Nonno were by our side not only throughout my pregnancy, but every day since you were born, helping mommy so that you could feel all the love you deserve in this world.
Instead of being jealous I wasn’t your main go-to person, I became extremely grateful that there was always someone whom to go. Whether it was your daddy, Grandma, Nonno, Zia, Zio, Tia, Auntie, Uncle, or one of our friends… I found comfort knowing you would always have a hand to hold, and you would always have multiple people to guide and protect you throughout this unpredictable life.
Instead of wishing I would be able to nurse you through every feeding, I began to see your “Superdad” evolve, up in the night for every feeding, so that your mommy could sleep uninterrupted. I began to realize that nursing WOULDN’T be the best for you for two different reasons. 1) Mommy had to go back on medication and 2) Bottle feeding allowed so many people to help me with this task, and through this you were able to bond with your entire family. Since this time, you really never hesitated being held by anyone, and to do this day, you are still the life of the party!
I began to learn that it didn’t need to be about what every other mother could do…it needed to be about what we could do together, and what we could do as a family. You made me realize that it was okay to NOT be the “Supermom” I always wanted to be.
You showed me that the most important things I could do for you were to simply hold you, nurture you, kiss you, and love you, You taught me in your own adorable ways, that Daddy, Grandma and Nonno could tackle so many tasks mommy was unable to do, and they did them with joy.
On top of loving you to pieces, I became very thankful for their ability to take you for walks, feed you, change you, and play with you, and I know they will always continue loving every second they spend with you. I remain very grateful for the special place they have in your life, as if it was not for them, your life would not be as blissful as it is.
Through knowing that you are so well taken care of, I realized that I too play a pretty crucial role in your life, as I was and always will be your mommy. Coming to this realization made everything make sense, and made everything I couldn’t do so much easier.
As you rapidly grew out of your baby years and into your four year old self, you continued to make it so easy to be your mommy, and I want to thank you for that. I know that due to my MS, you have been forced to grow up a lot quicker than most your age, and have been exposed to a world which many may never see.
Thank you for understanding when I can’t get you something right when you ask. Thank you for being patient with me when I can’t do things at the speed which others can, and thank you for all the days you have compromised to play catch rather than soccer.
Thank you for becoming the most compassionate little man I could have ever hoped for, and rubbing my legs when you know the pain is too much to bare.
Thank you for candidly explaining to random people why your mommy is in a wheelchair, and not having a care in the world regarding the stares you may not even notice you receive.
Thank you for your unbelievable attentiveness, using your ‘tools’ to fix my wheelchair… and for the many hills for which you have pushed me up.
Thank you for recognizing my challenges and loving me nonetheless.
You are more than just my SUN MOON and STARS Landon… You are my constant reminder that a “Supermom” doesn’t come in one single form.
In the mere 4 years of your life, you have been witness to more than some will be in their entire lifetime. You have helped to bring me out of depression and instantly created a fulfilling purpose in my life.
You have taught me what unconditional love is all about, and you have shown me how to appreciate the littlest things in life.
You have given me a reason to smile every single day, and have made me proud in many moments of your teeny tiny life.
It warms my heart to know how much you want me involved in almost everything you do, and it is an honour being able to call you my son.
Although there are many moments when I have had to say “sorry baby, mommy just can’t do that,” you rarely get upset, and instead immediately suggest another way of doing things, and I am thankful that your daddy, Grandma, and Nonno are always there to lend a helping hand… and to teach you so many wonderful things in this world.
Are you really only FOUR? I constantly ask myself…
There is never a day I am not impressed by you, thankful for you, or in awe of you.
Despite being wise beyond your years, I know you are still too little to understand the intricacies of our daily life, or what life may look like when you are older. None of us truly know my dear, that is what makes this illness so hard to manage… We just simply DON’T know.
Nonetheless, my ultimate wish for you is that the FUTURE you, will one day read this letter and understand that by teaching me to accept all the “mommy” things I’m unable to do, you have taught me how to be a “Supermom” after all.
You have taught me to be proud of my accomplishments and have taught me at the next level what it truly means to be grateful.
As Mother’s Day approaches, I want you to know just how amazing you are, and just how much you have changed my life for the better.
I want you to know that you will always be my driving force, my motivation, and my greatest love.
No matter what lies ahead for us, I want you to know I am already SO very proud of you. WE are so very proud of you, and we will always have your back, just as you have ours.
No matter what other obstacles we are forced to overcome…I will ALWAYS be your mommy, YOUR Supermom, and your number one fan.
I know I’m far from perfect, but I love you to the moon and back.
I always have. I always will.
Your Mommy with MS ❤️
#soluckytobeyourmamabear #proudmommy #fromyourmommywithMS #tomybabyboy #proud #grateful #unconditionallove #motherhood #MS #MSawareness
From the blank stares, to the worried stares, to the curious stares, to the ‘I remember you’ stares, to the ‘I’m pretending not to look’ stares, and to the quick glances that really aren’t that quick… It is human nature and it will never change. It instantly becomes one’s blunt reality the moment they transition from walking to wheeling.
Since the very first moments of my MS diagnosis, the thought of life in a wheelchair instantly entered my mind and it was a thought I DREADED becoming a reality. I simply couldn’t fathom how that type of life could be filled with happiness or success. Always being an athlete, with sports an integral part of my being, I just could not see how life would or could ‘go on’ in a wheelchair. I literally saw it as the absolute worst case scenario, and never imagined my mind would change. Why would it? In the beginning, despite my diagnosis, I was still fully able-bodied and I was still fully able to do everything I wanted, the WAY I wanted.
However, it was only two years post diagnosis when the downward spiral began. Little by little, my mobility dwindled away and so did my zest for life, smile, laughter, and positive outlook on my future.
Each day I fought SO hard to take microscopic steps, and instead of celebrating a win on the court, I began celebrating the days I was able to walk to the bathroom, cook a meal, stand for a mere 30 seconds, successfully step off of a curb, or complete any other task I once took for granted.
Only two years post diagnosis, the person I was became the person I never thought I’d be. My ability to drive and work quickly became luxuries I used to have, and were additional pieces of my independence that were snatched right out of my hands.
I spent day after day crying more hours than not, and each and every day was filled with nerve pain, chronic fatigue, and the unknowns of my future. My ability to contribute to my family became less and less, and my purpose in life became almost nonexistent.
Just when I thought things couldn’t get any worse, life proved me wrong and my worst case scenario became my harsh reality. The energy exerted to take two simple steps was no longer functional and this girl became “The Girl in the Wheelchair.”
You may be wondering why I reference myself in this way, and the simple answer is that I have learned how to OWN it. Yup, it was a turn of events I never saw coming. Wouldn’t you think my worst case scenario coming to fruition would launch me further into a life of misery? YA, me too… but it didn’t!
The moment I became a daily wheelchair user was the moment I regained my independence. I no longer had to rely on an arm to hold or a wall to grab. I no longer had to avoid going places I so desperately wanted to be, and best of all, I no longer had to play victim to my illness. Living in a wheelchair started to highlight all the things I was now ABLE to do, and it triggered my persistent pursuit of becoming an athlete once again.
I have said it many times before, and I’ll say it again, Wheelchair Tennis has changed my life. I know, it’s a pretty bold statement to make about a sport right? But it’s the truth. Wheelchair Tennis opened my eyes to all I could be despite my illness, and all the aspects of my life I could regain including my independence, confidence and overall happiness. My first time being back on the court rather than beside it, was a moment of empowerment and surrealism.
I developed the ability to see the world through a different lens, and started practicing gratitude on a regular basis. I lived each day with my life-changing quote as guidance and a daily reminder of all the things I have gained rather than lost.
“There’s ALWAYS someone who would love to have your bad days.”
No quote has ever resonated with me more deeply, and no quote is more true. Although my situation is one that presents a multitude of challenges, I know there are SO many people who have it worse and would trade places with me in an instant. It was during this time of self reflection when I began to realize that a wheelchair isn’t disabling at all. I not only learned how to survive in it, I learned how to THRIVE in it.
Of course living life in a chair is far from ideal, but it is also far from the ‘worst case scenario’ I had pinned in my mind. I’m still fully aware of all the different types of looks I receive, but I no longer see this in a negative light. I can once again enter a room with confidence, knowing that a wheelchair is merely a mode of transportation and one I am grateful to have. I know that people will often wonder what happened, and it will always be my story to tell, when and how I wish.
I know that no matter what I do, I will always stand out in a crowd, and this is a fact I have learned to embrace. Whether I’m remembered from an interesting conversation, a sparkly accessory, or as the girl in the wheelchair, it’s neither here nor there, because true confidence comes from within.
Do I still have dark days? ABSOLUTELY. I have days I still wonder why. I have days I still break down and cry, and I have days I still dream about the person I used to be. No day is easy and often the pain is unbearable to the point no words can describe. I have many days I don’t know how I am going to do it, and EVERY day I wish I could do more. I have MULTIPLE reasons why this isn’t fair and MULTIPLE symptoms I just can’t ignore. But regardless of the battles we face, it is the overcoming of these moments that strengthens us, shapes us and prepares us for the mental resilience needed to succeed in this life.
It’s through ALL the adversity overcome, battles won, and grieving the loss of myself, that I have learned one simple yet crucial life lesson:
No matter how difficult, how painful, how exhausting, or how emotionally draining it may be, OWNING our OWN reality is what it’s all about.
#thegirlinthewheelchair #truth #lifelessons #ownit #thrive #adversity #determination #persistency #multiplesclerosis #MSawareness #wheelchairtennis #personaljourney #overcomingobstacles #confidence
I may not be dancing like my 22 year old self, in fact I haven’t danced for 4 mins and 20 seconds in years, but tonight I did…
It’s been 10 years since MS officially crept into my life, and it’s an emotional time for many reasons. Life has certainly changed and there are many things I have lost along the way.
But tonight is proof to us and hopefully others watching, that with the right amount of love, strength, courage, and determination…maybe the impossible is more possible than we think😘❤️💕
#forbetterorforworse #MSawareness #multiplesclerosis #10yearsandstilldancing #onewayoranother #emotional #innerstrength #determination #courage #love
I hear you strong and courageous one…
I hear you chug chug CHUGGIN along at the very back of the bunch. I can feel your effort, your exhaustion and your pain. I can feel your teeth gritting together as you take one small yet ever so important step after the next. I can feel your hands sweating as they grip ever so tightly onto whatever it is you are relying to keep you up right.
My hands shake along with yours as you try to propel yourself forward just one last inch. I can feel your anger, your frustration, your disappointment, your fear, and most importantly your determination.
I know it’s harder for you than the rest. I know you look ahead and wonder why that can’t be you? Or maybe even more accurately, why that’s NOT you anymore?
I know it has been a long time since you have felt the effortlessness of lifting your legs, something similar to the feeling of floating in a salt water pool.
I totally understand how defeated you feel when the rug beneath your feet feels like fur, and I know how scary it is NOT to know what the next thing is you will trip over.
I can resonate with you ever so deeply when you say that you just don’t know what ‘normal’ feels like anymore, and that you simply can’t even IMAGINE what life must be like without pain.
I place no judgement whatsoever on the days you breakdown in tears, have the ugliest of ugliest cries, or scream at the top of your lungs and surprise yourself at how off pitch you can be.
I don’t wonder for a single second why you are more sensitive on some days over others, or why you feel a LEGIT celebration is in order for solely cooking your own meal.
I understand to the nth degree why you feel like throwing yourself your own damn fiesta JUST for cleaning your own room, and why HECK YES, walking to the end of your modest 1250 sq foot home DOES deserve a champagne popping party EVERY SINGLE TIME.
I know YOU know, that you have 50,000 reasons to scream while also realizing you have 50,000 more reasons to smile. But I also know, it just doesn’t always feel as such.
I know you are grateful for SO many things, while at the same time wondering ‘What the FAAAAARRRIG’ is going on in my body???
I know you are happy for others going through great times in their life, yet also feel empathy for those who are going through struggles of their own. I know you’re a good friend, a good parent, a good child and an overall great person.
But if nothing else, I want you to know that I get it. I get how you feel and I know you are trying. I know you are trying to be strong, to be grateful, and to be kind. I know you are trying your best to simply keep TRYING and I know you are ALWAYS trying your best to keep smiling.
I also know it’s not easy. I know it’s not easy to sometimes feel like a burden on others, yet continue to surprise those same people with the many triumphs you endure.
I know it’s not easy to get dressed in the morning let-alone ‘dressed up’ and I know on SO many days it would be SO much easier to just NOT…
To simply NOT get up, to NOT get dressed, to NOT smile, to NOT be kind, and to NOT be grateful.
Yet you ARE.
You may be the slowest, and most worn out one of the pack, but you are also the mightiest, bravest, most courageous and most experienced, because this reality is YOURS. It’s yours in every single essence it embodies, and YOU my friend have become the veteran of it all.
It will NEVER become easy, but in so many ways you have mastered the art of making it appear so. You will ALWAYS cross that finish line no matter how disadvantaged you start OR with how many huffs and puffs you exude, because after all, YOU are the the little engine that COULD and YOU my brave warrior are KILLING it!
#thelittleenginethatcould #chuggalug #nevergiveup #braverthanyourbattle #Igetyou #keeponkeepinon #strongerthanyouthink #MS MSawareness #warrior #blog #blogger #personaljourney #burnfireburn
The Undeniable Truth about Nerve Pain
Can you PLEASE check just ONE more time? There HAS to be something there. Maybe check a little higher, a little lower, or a little to the right, you say… Maybe get out your flashlight and put on your glasses, you say…
But no matter how many times checked or by how many different people, the same confident answer is always provided… “There is NOTHING there.”
HOWEVER, no matter how flawless your body may appear, negative of any cuts, scrapes, burns, rashes, bug bites, bee stings or breaks… YOU are right. There IS something there, only no one else can see it.
YES, the terrible cross-between feeling of being burnt in a fire and excruciatingly frostbitten, all exists just as horribly as it sounds, but only you can feel it while the rest must solely imagine.
CHRONIC NERVE PAIN: The absolute DEVIL of all pain. The type that can make you feel like a torture victim inside, yet forces to you to smile like the Queen of England on the outside, because as discussed above, you look GREAT!
While ALL pain is awful in its own individual way, I truly believe that nerve pain is often UNDERSTATED, simply because it is MISUNDERSTOOD. It is not the type of pain that most people experience in a lifetime, let-alone on a daily basis. Even most doctors themselves are more likely to have experienced the pain of a herniated disc, or childbirth, over chronic widespread nerve pain.
Often when I tell people I suffer from this type of pain, they compare it to something similar to sciatica. And by NO means am I trying to belittle the pain of sciatica, childbirth, OR a herniated disc, because I’ve experienced all of these before, and ALL are terribly painful. Every person’s pain threshold is different, and while I would never sign myself up for any of the above, I personally find nerve pain not only the most excruciating I have ever experienced (winning the prize over an all natural 18 hr long labour), but also the most difficult to treat.
AND…(a big AND)… since it is chronic in nature, there is NO end in sight. It invades my body during every second, of every hour, of every day, and there is no amount of time in which it will heal. #BRUTAL
Also, when asked, I find it one of the most difficult types of pain to describe, but here goes nothing…
SOMETIMES it feels as though my body has been thrown in a fire, SOMETIMES as if it is covered in a million little cuts with rubbing alcohol being poured into each and every one, and other times as if I am being stung by an entire swarm of bees.
SOMETIMES it feels as though my bones are literally going to split open from the overwhelming feeling of pressure, and EVERY day I feel as though a girdle is being ruthlessly tightened around my torso, notch by notch without EVER releasing.
With every move I make, the neurological feeling of pain and tightness from the top of rib cage, around my back and down to the very tips of my toes, increases in severity and often doesn’t improve for days or even weeks.
I have tried EVERY nerve pain medication on the market, including medical marijuana, and EVERY option offered at the pain clinic, yet STILL even the highest dose of my prescribed medication BARELY takes the edge off. I have also, without luck, tried many non-traditional medicine therapies.
My pain is also highly effected by environmental factors such as the weather, certain foods (which I religiously avoid) and VERY much so by any teeny tiny bit of bug or bacteria that enters my body, to the point that just being IN a hospital often increases my pain. And on a daily basis, if my level of pain spirals drastically out of control, NOTHING can reel it in. Two Tylenol threes don’t even touch it.
Over the past 5 years, and more specifically the last two, my nerve pain has increased in severity, just as my illness has progressed.
Ironically however, it is has been within these same two years, that I have developed more resilience than I ever fathomed possible.
It is also within this most recent year, that Wheelchair Tennis has taught me just how independent one can be in a chair both on and off the court.
SO… How am I able to be in such extreme pain on a daily basis, yet still compete on the courts? If the pain increases with every inch I move, how am I able to train at the intensity I do, and travel all over the place JUST to play tennis?
For me, it literally comes down to MIND over MATTER. And no, that doesn’t mean that I have some magical ability to ‘ignore’ my pain… I WISH.
But it’s either I do it in pain or I don’t do it all (and STILL be in pain.) The mind needs a distraction and Wheelchair Tennis just happens to be mine.
It’s either pushing through the pain or becoming a victim to it. The choice will ALWAYS remain mine to make .
To which many MS patients likely agree, we simply MUST find a way to channel our energy, and in a different way than we once did.
For many of us, we have already lost so much from our ‘Pre’ MS days, including the sports we ONCE loved, the car we ONCE drove, the heels we ONCE wore, and the blocks we ONCE walked without effort.
The gym we ONCE attended, the date-nights we ONCE enjoyed, the job at which we ONCE excelled, and the type of parent we ONCE thought we’d be.
We’ve been forced to overcome the not so subtle stares which we ALL know we receive, as we limp, stumble, or wheel into a room full of people.
We have been forced to find a way to disregard the feeling of a billion eyes fixated on us as we struggle to complete one of life’s ‘simplest’ tasks, such as stepping off of a curb, or transferring from our wheelchair into our seat at the dinner table.
We have had to find NEW ways of being happy, NEW ways of being successful, and new THINGS to be successful at. We have had to find NEW ways of exuding the confidence we ONCE held, and NEW ways of becoming strong.
We have had to find NEW date nights to enjoy, NEW flat as heck shoes to rock, and NEW ways of being the world’s BEST parent.
SO…in answer to WHY we are able to do such intense things whilst under such INTENSE pain, is simply because we are MS Warriors and we MUST.
We MUST go on in this life with a smile brighter than we ONCE eminated, a mind stronger than we ONCE fathomed possible, and hold hope higher than we EVER have before.
We must walk, limp, stumble or wheel into a room with confidence exuding from EVERY. SINGLE. NERVE. we so intensely feel, because this is our NEW life, the NEW version of ourselves, and our NEW level of resilience. These are the NEW cards we’ve been dealt, and with these cards baby, NO pain NO gain!
#althoughnopainwouldbebetter #bestrongandcarryon #thetruthaboutMSnervepain #braverthanyourbattle #MSawareness #neverlosehope #channelyourenergy #burnfireburn #literally
And with that big announcement…
Why THIS blog you may ask? Why THIS blog after being blog MIA for the past 6 months…?
To be honest, I never really know when or why an idea hits, but if I were to take a wild guess, I’d say that maybe my drive to write this particular blog has come from my own personal situation and its innate ability to put my personal problems into perspective. Or maybe it’s the visits with my family in Mexico and witnessing first hand JUST how little can make them happy. But most likely, it’s probably a combination of both the aforementioned.
First World Problems. We are all faced with them. For many of us, we find ourselves trying to battle them Every. Single. Day… And don’t get me wrong, most of the time the struggle is REAL. We Legit find ourselves stressed out to the max about the ‘craziness’ in our world, which doesn’t even exist in the majority of Third World countries. The little things we worry about to the point of near or total nervous breakdowns don’t even cross the minds of those who are simply struggling daily to put food on their table.
Whether it is a problem with nail polish that won’t dry QUITE quick enough, a dress that doesn’t fit QUITE tight enough, a mosaic tile that doesn’t have QUITE enough Sparkle, a paint colour that doesn’t QUITE mesh with the rest of our decor, a love we can’t QUITE forget, our children’s toys for which we can’t find QUITE enough storage, a selfie that didn’t turn out QUITE right, a day that’s too hot, too cold, too humid, too dull, or just not QUITE right, a vacation that wasn’t QUITE what we envisioned, An iPad without QUITE enough battery, a cellphone without QUITE enough data, OR a fridge FULL of food, but one without QUITE the right variety…
Oh dear! The struggle is REAL (or so it appears)
The list above barely even grazes the surface. Us lucky First World civilians create problems of which a good portion of the world couldn’t even dream.
WHY?… Because they’ve never even heard of the term ‘Shellac’, or ever had enough money to go dress shopping. Their most decorative object is a table cloth gifted 10 years ago (which by the way they LOVE), and a vacation? YA. RIGHT.
They have children who don’t understand why Santa Claus doesn’t visit THEIR house, and therefore never get ‘A’ new toy, let-alone 20!
For the majority of them, any selfie is a great selfie because it means they’ve had the opportunity to explore a new camera, and if most lucky, a new cellphone. A phone which is perfect just the way it is, no matter how many gigabytes of data it has loaded within, or how crystal clear its camera is. And NO… they don’t necessarily understand how gut-wrenching it is to look into a fridge full of food but to have to go a DAY without Nutella… Because first of all, they find themselves lucky to be able to look into a fridge at all, and second, if it solely has toast and butter inside, they find themselves #winning.
But hey! sometimes it’s okay to get lost in the problems only we notice, because trust me, non shellac nail polish is one of my BIGGEST pet-peeves. Yes, I too, often get caught up in the problems of us First ‘Worlders’… it happens, and it’s okay.
It happens because we are lucky enough to live in a country where we DO have heated debates regarding which mosaic tile to choose, and whether we should upgrade to the newest android vs iphone, hardwood floors Vs. sturdy laminate, granite counters Vs. quartz, Cable TV Vs. an android box, a new Honda Vs. Hyundai, Cadillac Vs, Lexus, to register for another season of Soccer Vs. Tennis, Personal training Vs. Group classes, to buy a new 3 bedroom house Vs. 4 bedrooms, and whether or not that new fireplace mantle really adds the ‘pizzazz’ for which we were hoping.
All of this is okay to ponder about. Whether it’s these exact examples or not, we are ALL guilty of worrying about things which others can’t even fathom. There are levels of First World problems, some worse than others… But YES, your gross cold that you WILL get over no matter how awful it feels at the time, is STILL a first world problem.
What’s even more important than recognizing all of this, is snapping the heck out of it, and beginning to focus on what’s really important, or for lack of better terms… Finding a REAL problem.
We all have them… REAL problems. But sometimes we focus so much on the superficial that we forget to solve the issues of real importance. The ones that will help us to become healthier people, better friends, better parents, better spouses, betters sisters, better brothers, better sons, better daughters, better co-workers, and just down right better civilians.
Before I had MS, I was the QUEEN of first world problems, because quite frankly, I never really thought any different. I was young, healthy and ignorant to many of the REAL problems which continue to plague our world. Classic FWTCS (First World Teenage Civilian Syndrome)
BUT then I grew up. I grew up faster than I wanted to and I was faced with a REAL problem. Still not a full blown Third World problem, but a REAL one non-the-less. One with a magnitude I wasn’t sure I would ever be able to handle. But 8 years later I’m still here. I’ve made it. (so far), and despite the weakness and pain that troubles my body every day, I truly believe that in many other ways, I’m stronger than ever. I started focusing on what really matters, the REAL problems…and although I may still have the occasional relapse into the “FIRST WORLD PROBLEM FRENZY,” I have become more aware of what REAL problems are, how to approach them, and how to worry LESS about the superficial.
I am FAR from perfect, I am pretty sure we all are, but it’s time to start putting our First World problems last and our REAL ones first. And if you just so happen to be part of the lucky .000001% who doesn’t have a REAL problem, just simply look to your right, left, deep within, or across the globe, because there is ALWAYS someone who would love the help! And if you find yourself on the opposite end of the spectrum with First World problem overload, just take a deep breath, reel it in, and REMEMBER… There is ALWAYS someone who would love to have your bad days.
#firstworldproblemfrenzy #suckitupbuttercup #bestrongandmoveon #perspective #firstworldproblemslastandrealonesfirst #braverthanyourbattle
As my blogs go on and my story continues, I’m sure by now you realize that having MS is far from a walk in the park.
Starting out with a disease you know nothing about is probably one of the most challenging parts. You don’t know how to react, what to say, what to do, and you often don’t know who to talk to. SO sometimes the initial reaction is to do nothing. But THAT right there, is my first DON’T.
1) DON’T do NOTHING
When faced with a challenging situation or a mountain high build-up of adversity, it’s certainly easy to lay back and not do anything at all. But it has been my discovery that doing nothing during a time which requires action, lands you further away from your ultimate goal of becoming the best version of yourself. It doesn’t have to be a big step. Just be brave enough to take one, and see where it may lead you.
Reach out to others who are facing a similar situation, friends and family for support, and be sure to do your own research so you can become educated on how to best tackle each and every day.
For a long time, my decision to continue doing what I was doing in terms of work, physical activity, relationships Etc. WASN’T a decision NOT to do anything. It was actually a decision to continue doing EVERYTHING that made me happy. I also made the decision to become educated on the disease so when and if it struck, I was ready. And boy did it ever!
2) DON’T Drown yourself in Self-Pity
Of course it’s okay to feel sorry for yourself sometimes. It’s a natural part of life regardless of what you’re dealing with. It’s a PERFECTLY understandable reaction when you’re dealt cards you never saw coming, or when you are grieving either the loss of a loved one or even the loss of yourself.
BUT there MUST come a time when things are put into perspective and you realize that your life is FAR from over. It’s about finding other means to be happy, and finding alternative solutions to building the best version of yourself, regardless of the adversity you are forced to face.
It’s okay to once in awhile have mini or MAJOR meltdowns, just as long as you don’t drown yourself in pity, and blind yourself from seeing the potential this life still has to offer. And if you’re having trouble doing this, just think back to my favourite quote which I’ve mentioned time and time again…”There is ALWAYS someone who would LOVE to have your bad days”
3) DON’T Belittle the Severity of Other People’s Problems
Sure, it is easy to look at other people and think “how can she be complaining about this? Or how can he be complaining about that? When they are able to walk, they’re able to do whatever they want to do and I’m here in a wheelchair not being able to do so many things I used to be able to do..😡
Trust me I’ve been there. I’ve been the one straight up pissed off at the person who mentions how brutal their cold is on Facebook or how awful their back pain is during pregnancy, when I had THAT back pain, PLUS suffocating tightness throughout my torso, the inability to breathe at times, the inability to sleep, the feeling of my body being burnt in a fire etc. Etc.
BUT I’ve stopped all that. I’ve stopped mentally belittling other people’s problems because once all is put into perspective, each person’s problem is their own reality of awful. AND although they most definitely are genuine when they feel badly for our struggles, we can’t expect them to fully understand what they don’t experience. NOR can we expect ourselves to fully understand other people’s struggles because of the exact same reason. We don’t know it because we have NOT experienced it.
We can be sympathetic or empathetic, but until you walk a day in their shoes or they walk a day in yours, it’s unfair to place judgment. And there will NEVER come a time when we do walk a day in each other’s shoes, because even when dealing with the EXACT same disease, we don’t deal with the EXACT same symptoms. Even the closest we can get will NEVER be exact.
Of course, if we find ourselves dealing with a similar situation we can lend our support, opinions, or advice on how WE cope, but we can’t expect everybody to see things the way we do. We are UNIQUE Individuals. EACH with our own UNIQUE stories.
Understanding this alone has given me the clarity necessary to recognize that the problems others deal with are REAL, and sometimes although we may not think they are close to the severity of our own, just remember that often people have problems of which we know absolutely nothing about.
We DON’T know how bad that back pain was during pregnancy or what other struggles they endured. We DON’T know how bad that cold was or what other health problems it may have led to.
You see the problem with social media is that most of us put our best face forward and leave our problems in the background. We like to shine in the spotlight when we are proud of our accomplishments but most of us don’t talk about the struggles behind them OR take selfies when we feel and look our worst.
So although Facebook is great at connecting us all together, we must also remember that there is likely a whole lot of NOT so amazing parts of people’s lives we will never hear about nor see.
I have never recognized this to the level I do now. We are all facing our own unique battles, and there should NEVER be a reason why we feel OURS needs to win a grand prize.
Because at the end of the day, it’s not our job to be a ‘problem severity detector’ or to be the ones placing judgment on another person’s life.
Problems are ALL problems. NONE are a walk in the park, and NONE are a trip to Disneyland. PROBLEMS are PROBLEMS that NONE of us wish to have.
4) DO be Courageous
Over the years BOTH living as an MS warrior AND as myself prior to MS, I’ve come to the conclusion that hardly anything ever comes easily. Almost EVERYTHING I’ve accomplished thus far in life has included FEAR, CHALLENGE and FRUSTRATION at some level or another.
In fact I can’t even remember a time when something worthwhile came easily.
ESPECIALLY now. ESPECIALLY when just waking up and getting through the day seems like a bigger task than I ever imagined possible. BUT somehow I always get up, I always fight through ALL the debilitating symptoms, and I ALWAYS make it through one more day.
I’ve learned that in order to continue to do this day in and day out I must be courageous, I must be brave and I must be willing and able to build the resilience necessary to ‘Keep On Keepin On.’
I may not escape this life unscathed, but I WILL escape this life knowing I didn’t hide from my fears, I didn’t run away when things got tough. INSTEAD, I stepped up to the plate and got tougher.
Not all at once… It wasn’t always this way, but life’s a journey, and although this isn’t my desired ending, I am happy and grateful for this place I’m at now.
5) DO get Dressed up
I really do genuinely believe that feeling good and looking good are very much related. And I’m not talking about getting dressed up to the point you’re wearing heels and a ball gown around the house, as I’m not even able to physically do that.
For me it’s about getting out of my pajamas, into a fresh outfit, doing my hair and doing my makeup so that I can look put together the majority of the time.
Obviously being a mother, and with the physical restraints I face, this isn’t easy and it doesn’t happen one hundred percent of the time, but I really try to make it a priority.
It doesn’t make my pain better or miraculously make me walk better, but it boosts my confidence, my mood and it makes me feel like I am ready to conquer the day.
Often the amount of pain I endure on a daily basis is more than I can even describe in words, and on my WORST days I am often plagued with partial body paralysis, leaving me with the inability to hardly move at all.
But still, even on my WORST days, I have made it my mission to freshen up in order to look the part of the warrior I KNOW I need to be.
You don’t have to deck yourself out with makeup, or as I mentioned, walk around the house in a ball gown and heels. Even putting on a fresh yoga oufit and putting on some lipstick goes a long way for me.
Some of you may be thinking, isn’t this a little vain? To which my response is: ABSOLUTELY NOT! It’s about taking care of yourself, putting love and effort into yourself, and thus becoming ready to conquer the day, so you can get one step closer to smashing that almighty goal of yours. You don’t have to do all of what I said. Skip the makeup if you want.
But do whatever you need to do in order to create POWERFUL self motivation. Enough motivation to get doing what you KNOW needs to be done, and look good while doing it might I add. 😎
6)Do Remain Patient and become your OWN Advocate
This may be the hardest one of all. When things aren’t going right in life we immediately want to fix them, or find somebody else who can help us to fix them. But unfortunately with an incurable illness like MS, there is no quick fix and in fact there’s currently no fix at all.
Hopes remain high that one day there will be a cure, but until then, like I said at the very beginning of this article, DON’T do NOTHING.
Patience is not sitting around and hoping for the World to Change. In my opinion, it is actually the complete opposite. It is being a self Advocate, a go-getter, determined fighter, and a persistent never settling warrior. It is always looking for the next BEST Avenue to explore in your ever winding Journey.
And when things don’t go as planned, and things don’t become as successful as you once hoped, it’s about NOT giving up. It’s becoming tougher, building an additional layer of resilience and pushing forward to find the next best thing to explore.
It’s all the phone calls and emails necessary to possibly get involved with a brand new opportunity. Maybe it’s a clinical trial, new job, or maybe it’s something totally unrelated to work or health.
But regardless of what it is, things will not land in your lap. You must be a self advocate in order to find these things, and if they don’t become part of your journey right away, it’s being patient enough to realize that maybe one day they will.
Everything I have mentioned in this last bullet point takes an immense amount of patience. Patience to be accepted, patience for it to work, and patience if it doesn’t. It’s NOT getting discouraged and INSTEAD becoming a whole other level of DETERMINED because you KNOW you are that FIERY and FIERCE fighter who won’t stop until the job’s done or the goal is reached.
The GOAL is totally up to you, your life, and your situation. Maybe it is a combination of goals and maybe it is a lot of stepping stones you must reach and cross over BEFORE moving on to the next best thing. But whatever it is, be patient, kind to yourself, and understanding that some of the best things in life take a whole LOT of time.
REMEMBER that patience is a virtue and Rome wasn’t built in a day!
#theDosandDonts #lessonslearned #lifelessons #bethebestversionofyourself #patience #bravery #fighter #MSawareness #warrior #burnfireburn!!
This hasn’t always been my philosophy. I haven’t ALWAYS been this mega positive person with nothing to lose and everything to gain. And trust me, I’m STILL not ALWAYS this way. I realize I actually have LOTS to lose with this progressive and chronic illness, but I have chosen to look at things in a different way.
Before I started seeing my life in a different light… BEFORE it began to shine multiple shades of positivity, it shone MULTIPLE shades of grey.
The darkness, the dreariness…it definitely took a hold of my world in ways I never even imagined. The meltdowns were often and the outbursts uncontrollable.
I was ANGRY. At times I was MISERABLE… And for 4 years of my life I couldn’t even Imagine how I was EVER going to see all those bright colours again. For 4 years of my life ALL I could think about was ‘WHY ME?’
But as soon as I discovered my NOW favourite quote, it really resonated with me. It resonated deeper than a quote ever has. It resonated so deeply that it is now what I think about during my downright toughest days. During those rock bottom, dark and debilitating moments, I think of these simple yet powerful words:
“There is Always, always, ALWAYS someone who would LOVE to have your bad days”
And EVERY time IMMEDIATELY after thinking of those words, the glass goes from Half-EMPTY to Half-FULL.
And seeing the glass half full is what has gotten me through my toughest days yet, and what I count on to get me through the toughest ones yet to come.
But what does the glass half full REALLY mean to me? Well, It means many things…
It means realizing life hasn’t turned out exactly the way I anticipated, yet being grateful I still have one.
It means realizing that LITERALLY half of my body has decided to shut down, but embracing the other half that still works.
It means understanding that there are some people in this life who have next to NO function left at all, and being incredibly grateful for what I still have.
It’s being aware that some people’s life has been burdened with a TERRIBLE terminal illness, and being extremely thankful that no specific time limit has been put on mine.
It’s allowing myself to be disappointed that I can’t play sports the way I used to, but understanding that some people can’t play at all.
And by taking the time to make note of all of these things for which I’m grateful, life starts to appear much MUCH brighter.
For me, it is taking the time to think of all the quadrapalegics, paraplegics, and persons with whom I would NEVER want to trade places.
It comes down to allowing myself to relate to characters in movies like “Me before You.”- An emotional true story about an active young man who’s life is DRASTICALLY changed in a split second after a MAJOR spinal cord injury. It’s allowing myself to let out the tears during parts that remind me so much of my own situation, yet then snapping back out of it when I realize this poor man can’t even adjust himself in bed.
It’s finding that happy medium where the emotion is raw, but not raw enough to make me sink down into a deep dark depression.
It’s moments like these when my favourite quote resonates even DEEPER and the glass appears even FULLER.
And by choosing to see the glass Half full, my accomplishments become bigger and my smiles become brighter.
It’s not that I don’t give myself the permission to be mad, angry, scared or confused. It’s that I have CHOSEN to not let IT take control of my life.
I still cry, I still scream out of frustration, and I most DEFINITELY still ask why??? BUT those moments have become more minimal.
What has become more common are the moments I go shopping, out to a friend’s house, or out to dinner and ROCK that wheelchair like nobody’s business. It’s the confidence and resilience I have built deep within that is becoming tougher and tougher to break.
It’s taking full advantage of the time when my upper body still works and finding a way to play tennis, one of my biggest passions, DESPITE having to play it seated.
It’s allowing myself to complain about just how taxing this UNBEARABLE pain is on my body 24/7, yet at the same time being EXTREMELY thankful I have a loving and supportive family to complain to.
And above and beyond all that, it’s allowing myself to be FULL out frustrated I can’t physically be the mother I once imagined I would be many moons ago, but being incredibly grateful for being one at all.
It’s allowing myself to be frustrated and upset that I’m not able to be the ‘Hands-On’ ACTIVE mother who gets to teach my son all the sports I once played, BUT being SO unbelievably grateful he’s healthy and able to play with a ‘Hands-On’ Father, Nonno, Grandma, Mama, Papa, Abueula, Abuelo, Zia, Zio, Tio’s, Tia’s, Aunties, Uncles, cousins, and friends who care about him in ways he doesn’t even know yet.
It’s allowing myself to be okay with WISHING I was one of those ‘SUPER-MOMS’, yet being thankful I still have the cognitive capacity to relate with him, interact with him, and witness/acknowledge all of the milestones he accomplishes.
It’s knowing that no matter how bad days get, I have the sweetest most intuitive little boy who can literally turn any frown upside down in an INSTANT.
And once I really think about ALL that I STILL have, and ALL that I am thankful for…
How can the glass be seen in any other way?
Whether I choose pessimism or optimism, I still have pain, I still have debilitating fatigue, and I still have half of my body which has decided not to work.
However on the flip side, I have a whole other half of my body that still works, a son who melts my heart everyday with a single smile, and a family who supports me in every way.
It’s about ALWAYS finding one reason to smile in exchange for each negative thought or tear that is shed.
And by doing this successfully, is there really any real value in seeing the glass half empty? #ithinknot
But the choice is INTRINSICALLY yours!
#glasshalffull #thebrighterside #thechoiceisyours #myjourney #MS #MSawareness