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Kung Hee Fat Choy

Kung Hee Fat Choy

Just in time for the Lunar New Year… Few things I’ve recently noticed. First thing, I recently realized I’ve been finding it harder and harder to get motivated to blog. Not that I don’t have just as much to say as I always do but more so just getting inspired enough to sit and put all of my thoughts down. I went and re-read all of my past blogs and figured out that I’m most inspired to write when I’m feeling down. So, year one, I have the most entries but as the years went on (as I learned more and more to better “live with” my new self), I wrote less and less because I focused more of my energy on actually just trying to live instead of writing about all the ways in which I wasn’t. It just didn’t seem priority to want to write about good days and sit in a bed that I resented so much to do so. Maybe its feeling entombed to my bed that inspires me most, maybe its the correlation between blogging and it being a bad day that scared me, or maybe the inspiration is always within me but I just don’t make enough time to actually sit and do it when I am feeling good. In any event, it challenged me to want to make it a point to dedicate more time to sharing more of me… On good days and bad.
So… NO new year, new me BS. Different year, same-ish me, still hyperfocused on getting better and better every day, still me and my ninjas, and still have MS. With that being said, I will admit I did feel an odd sense of guilt that I wasn’t one of those folks eagerly awaiting the new year as if it contained some magical potion to be released at midnight that was gonna cure all of the chaos of the world we found ourselves in-the covid crisis. I know 2020 was very hard on most and while I can empathize with tragedy, I don’t want to carry any guilt or dim my light that 2020 was one of the best years for me, that I can remember. Second thing I noticed, I feel I grew in 2020 more than I’ve ever grown as a person, from the inside out. It wasn’t just finding the love of my life in 2020 that made it great. It was the work I started on myself, it was finally feeling ready to face many demons of my past, it was a new willingness to be accountable for who I wanted to be moving forward, it was the extra time I got with my kids being locked in the same house, and most importantly-it was putting so much outside noise into very clear perspective. By outside noise, I mean, ever since getting diagnosed and very quickly having all the effects of MS take over my life (mainly daily battling extreme and constant fatigue with the occasional drunken sailor syndrome as far as walking and then the gastro issues as the cherry on top), I’ve always felt very resentful and scared that I could no longer work in the ways I knew how. For example, if I wanted to buy something or if we needed something that I hadn’t budgeted for, I would just work more to earn more (seems simple right?). Well without ever knowing how I’m gonna be feeling on any said day, this made me feel like I was out of control of my own destiny, my own life, my own body and unable to ever feel confident that I could provide as I always have. I felt trapped and angry constantly and would allow myself to drown in wallow that this was now my reality… Maybe showing the world how devastated I was for the losses I couldn’t seem to move past would somehow make my MS magically go away?!?! Maybe I’d cry enough tears so life would magically get easy? I felt helpless but somehow the misery of the pity party felt good in those moments. Somehow, I was convincing myself that if I mourned the things I missed the most enough, those things would return but everything else would remain in its revised versions?? I wanted it to go back to how things were, I wanted to feel in control… But this just wasn’t my reality any longer and for so long, I allowed the FEAR of what I could no longer control to hold me hostage to negativity and self-induced doom and gloom. This caused me a layer of underlying stress that constantly loomed over me because this affected income which affects my entire world and everyone in it. Just the mere thought of NOT being able to work as much as I used to caused me to automatically create all these negative stressors in my own head that were not even my reality yet… That may never have ever become a reality. I worried about being able to pay things now and in the future, I worried about taking care of my kids and their futures, I worried about not being able to function on days where I had scheduled work, I worried about what I would do if I just couldn’t accommodate doing real estate any longer, I worried about my sickness progressing and how that would truly devastate my whole world and everyone in it who relied on me. I just worried way too much about a lot of shit that I was actually just poisoning my own head with. I had to stop spinning in slippery thoughts, get out of my own head, and fight to stay in the here and now because everything around me was so beautiful. With or without money, I will always have my babies by my side no matter what and that is whats MOST important. I’ve come to love the new me and I’m learning every day how to accept the price of the new me was shedding every part of the old me… Even the parts I miss and cry for. I’ve made peace with not being able to bring what I pick and chose from the old me and am learning how to love every part of the new me, challenges and all. It’s always easy to validate worry over money because its actually a thing. No one really faults another for their worry about financial stability-especially a single mom who doesn’t get any child support. 2020 happening and the way it did, taught me that first and foremost, I definitely don’t need as much money coming in as I seemed to scare myself into thinking I did. Realizing how much I overly stressed about money and getting thru almost an entire year without barely leaving my house led alone working has really taught me that many things I worried over, were absolutely things I created in my own head… Thus causing me more unnecessary stress than I ever needed (and we all know how great stress is for MS). I had everything I needed all around me and I definitely allow myself, at times, to dwell more than I need to on the life I HAD and the one I wish I still had at times, instead of just soaking up the beauty of where I’m at right now. I often feel bad for my significant other because he only knows this version of me. He only knows Nicole 2.0. So whenever I do go down the rabbit hole of self misery, he doesn’t really know how to console me. He didn’t experience the old Nicole and therefore can’t always grasp what exactly it is that I’m crying over. I sometimes tell him that I don’t even think he would’ve loved the old Nicole because a lot of the time, I didn’t love the old Nicole. And then with a heavy heart and confused look often ask myself what is it exactly that I miss so much then?
I once saw a meme that read “MS continuously challenges me to find a balance between pride and humility”. I never read a truer statement. I know who I used to be and what that person was capable of and while MS has tragically changed a lot of me, I have to constantly remind myself that it may look and feel different on the other side but both sides are beautiful. There are parts of me that I resent now, like not ever being able to plan anything reasonably or feeling like I lean on those around me more than I ever did but when I compare which Nicole I would choose, I think I would still choose this me. And not just for myself but also for those around me. So this new year brings for us, still working from home, still distance learning, still no youth sports, still not going out a whole lot, still enjoying each other at home (hopefully in our new backyard very soon), but also many, many blessings in the forms of revelations. What and who is really important, who and what truly deserves your time and energy, what things you allow to live inside your head, and always being completely accountable for what version of yourself you present to the world. I now challenge myself to live in the faith I so often claim to have. Faith is the pure trust and confidence that everything will work out and despite my many worries about everything under the sun, everything has always worked out and I do absolutely trust in my heart that everything will continue to work out exactly as they are supposed to.
The foolish man seeks happiness in the distance (or PAST like me), the wise man grows it under his feet. Cheers to another trip around the sun and to watering and cultivating the here and now.

All aboard the CORONAcoaster

All aboard the CORONAcoaster

The last post I had made was back in May… At that time, I had written about all the covid craziness. I wouldn’t say things got worse per se but I will say that things kept to the same pace that I had felt all those months back and unfortunately things didn’t magically get better (not even with the election concluding as it had once been rumoured). The days continued to feel long, so the desire to LIVE kept building and bills did not stop even though everything else in life seemed to be on hold… or at least operating in what appeared to be slow-motion because while normalcy was craved, anyone could look around and see that no matter how much everyone wanted to just pick life back up, as it stood, life was definitely anything but feeling normal. My son did end up having a graduation ceremony in July, as you can imagine, it was nothing like I had expected or hoped it would be after waiting 18 years for that special day. But we made the best of it and despite my crippling fears of the virus, was proud of myself and grateful that we were able to celebrate with a small family dinner at Outback (and how fitting, lol).
Anyway, it was also around this time that I had started therapy (telehealth, video chatting-if you are even remotely uncomfortable with the idea of therapy, this is definitely an option that makes the uncomfortable-more comfortable…if that makes sense)?! Anyway, so I started therapy and my “lockdown lover” moved back home to his place when the lockdown restrictions started lifting.
I initially started therapy because I was overthinking everything concerning the virus. I was paranoid to no end, didn’t imagine ever leaving the house again, and feeling like I couldn’t hug my own kids out of fear that they may have been exposed when not in my presence. My co-workers were having the best year ever financially since real estate was still booming in Las Vegas, coupled with the historically low-interest rates and here I was afraid to even leave the house led alone meet with clients, especially new clients or those driving in from out-of-state. Even the clients I did meet with, I met with them in such an eerie state of mind because I just absolutely felt I couldn’t trust anyone, couldn’t trust where anyone had been, and just lacked the basic faith in humanity that every person was following the guidelines that had been suggested especially when compromised or dealing with someone compromised (I don’t even disclose my situation to most people so that part is my own fault). I didn’t want to be there but since I don’t qualify for unemployment felt I had no choice but to work when I absolutely could.

I couldn’t live like that anymore.

While I had physically been present for therapy sessions of the past, this was the first time I was actually ready for therapy. This was me wanting to be a better version of myself and admitting that I would need help to get there. This was me surrendering to the fact that I already operate at a max capacity majority of the time (physically/mentally/emotionally) and adding on the mental fuckery the virus was doing to me, was just too much. This was me truly committing to the hard work I knew it would take to make myself healthy from the inside out (I anticipated this being a much more difficult venture than taking my pills on time, eating better, and exercising when I could). After the 2019 I had, I felt I owed it to myself and those around me to better myself where I could and continue to strive to be the best version of myself.
Therapy, this time around, has truly been life-changing. I’ve always had people I could vent to throughout life and I’ve always utilized that option the most (in hindsight-probably NOT the most conducive avenues since those around me, who love me, also likely fear me most of the time and don’t always say what they probably should or would want to). I always appreciated the fact that my sounding boards were just a simple phone call away or a short drive down the road and conveniently always available but everyone knows you are drawn to the support source that makes you feel better (instant gratification) and unfortunately, truly getting better and healing deep wounds usually takes hearing a harsh truth you don’t want to face and definitely won’t happen overnight and without work… So while I would end up feeling better about whatever was bothering me for that moment, I wasn’t getting the true push or hard dose of reality to really take the steps to wake up and work on myself-to really look within and commit to doing the work (whatever that looked like) and truly heal instead of quickly moving on and adding more resentment onto the mountain of suppression I already carried. In addition to the smoke up my ass I had been filled with for years (thanks to those around me who love me), I was putting a lot of things behind me but not actually working through anything so, therefore, ZERO resolution in reality… Moreso just a lot of moving from one toxic situation to the next with my same baggage in tow (I’ve learned people with many “options” can tend to have the hardest time to look within because what one person won’t tell you, someone else will and what one person won’t give you, someone else will-grass is greener syndrome). Plus, as I mentioned previously, I had been to therapy years ago when I had filed for divorce… Obviously, I ended up divorced anyway, so my faith in “therapy” was weary due to this fact as I’m sure you can imagine. I looked at people who heavily relied on therapists as a weakness and I battled with my own level of self-guilt when I found myself wanting to reach out to my own therapist between sessions because now I was feeling overly reliant on a crutch I had looked at as negative for so long. This entire process has been so humbling but more importantly very healing for me and it has taught me so much. Now I even find myself feeling accomplished at times because I was finally able to see how much I stood in my own way (if you are looking for excuses, you will find them).
Since starting therapy, there has been many highs and lows. I have reached my witts ends at times where I found myself begging and pleading for things to “just get easier” or to let me off of this roller coaster that seemed to have no end or days where I just talk to God constantly for guidance and strength. I had never imagined starting therapy for my paranoia of a virus and that turning into a complete overhaul and cleanse of my entire life-being-and existence. Situationally, I have re-visited dark chapters of my life at times… Ya know, things occur in our everyday lives and they trigger some painful past event and you re-live those emotions and pain temporarily but NEVER did I imagine allowing myself to surrender completely and opening the flood gates completely of every past pain, disappointment, or resentment that I had until now. I have now processed many of my childhood traumas (most of which I didn’t want to remember and many of which I would’ve never imagined sharing with anyone especially with a stranger) and this process led to talking about, working through, and reliving many of my painful failed adult relationships as well as a result of everything I’ve always denied myself of feeling. At this point, I wasn’t having relationship problems currently per se but starting a new relationship during a global pandemic/lockdown can have its own challenges and I am so happy therapy has helped us both to grow individually as well as to get closer than ever as a couple. I always imagined what starting a healthy relationship built on a strong foundation would look like and while I don’t have a crystal ball-feel the MOST confident I have ever felt in a budding relationship. I feel confident that I have my first healthy relationship and am happy to build something without starting in a deficit for the first time in my life. I know therapy has helped me to become a better version of myself and I am beyond thrilled that this is the person I am presenting versus the version of me in my past. I no longer look at therapy as a weakness but rather a beautiful bridge between childhood traumas that no one asked for and living each current moment as your best one-allowing yourself the freedom to live your best life. Cutting the ties to many of my childhood traumas and actually working through and processing these events in healthy ways has resulted in me learning to react less overall, control my anger and anxious ways, think more about what I’m actually feeling in that moment, react appropriately for whatever is happening just in front of me, stop the fight-or-flight auto-responses, and get my wound responses under control so I am not making some innocent person in front of me pay for my painful past that I chose to carry with me. I feel healthier and a whole lot lighter. I know I always carry MS with me but the load of my overall stresses became so much easier to carry when my hands weren’t full of past pain preoccupying my whole life. I no longer feel like a ticking time bomb.
I don’t know what lockdown or covid would’ve looked like if I wasn’t compromised. I imagine I would’ve gone without the extreme paranoia but would have continued to try to live as normal as possible so I can empathize with those who feel stir-crazy and crave social environments and interaction with others. I never considered myself a very outgoing or social person and enjoyed being a homebody even prior to my diagnosis but I understand much better the true differences between the choice to leave your comfort zone or not and having orders to completely isolate in your home because you cannot leave. I don’t know what the world will be like when the panic passes or if it will ever really completely subside (especially for me), but what I do know is that I wouldn’t change anything that’s happened because it brought me to where I’m at and there’s no place I’d rather be. I can actually say I am proud of the person I am becoming and will continue to strive and work to be better with each day and that I am right where I belong. For the first time in my life, I feel like I can exhale. I have had chapters in my life where money was no object and I’ve been overwhelmed with material things but nothing compares to the true fulfilment I feel since I’ve started the healing journey back to myself.

Year of the P.A.N.I.C.

Year of the P.A.N.I.C.

2019 was the “year of the boar” in Chinese astrology. I did an entire rant previously about how that should’ve been MY year. Anyway- fast forward to 2019 coming to an end and my excitement to welcome a brand new year and decade… Hello, 2020! You know, the whole “can’t go anywhere but up from here” attitude… Who would’ve known what 2020 would’ve had in store for the world-at least the beginning half of 2020 anyway since we have yet to see how our world and city will actually recover from the first shutdown in history… Fast forward to May (pretty much halfway through the entire calendar year) and how quickly do the problems of your 2019 seem much more trivial now than they actually were in those moments. In hindsight right? In 2020-perfect vision (pun intended), when if you needed something from the grocery store-it was so simple to run there and get it, right?
With so much going on concerning the CoronaVirus for the last 7 weeks, it was hard not to get uber consumed in the mayhem at times. The panic grocery store runs, seeing the aisles of what should be full shelves of canned goods or cleaning products absolutely barren, going down the black hole of conspiracy theories, and talking yourself out of that eerie feeling of “is this all really happening”? Oh, and don’t forget the constant reminders throughout this whole ordeal that WE are compromised, WE are high-risk, WE could be affected much more severe than the average person getting COVID-19. That is a scary reminder to have constantly looming with no end in sight and if they do come up with some miracle vaccination-do WE even get to truly benefit from that? That is a heavy reminder to carry as if it’s not already hard enough to leave the house and see nothing but face masks everywhere you go, wearing of gloves, people intentionally avoiding each other like the plague, and just a sheer feeling of desolation in a city that supposedly never sleeps. As ridiculous as I feel this has all gotten at moments-when I see people wearing entire hazmat suits at Costco or a lady wearing a legit eye mask to sleep over her nose and mouth as if it is an actual mask for your nose and mouth?!?, it is equally as frightening at the same time. Like I legit go through moments where I feel like if I get CoronaVirus, I’m gonna die… and it sucks!!! I’m sure I’m not alone in all that paranoia and as much as one can attempt to stay sane in between all the craziness-eventually it wears you down, eventually, it’s everywhere and constantly in your face and I often run questions through my own mind like is this really gonna be a thing every year (I’ve heard this theory)? Will this become the new flu season? Could I really imagine living a life primarily like this forever? Depending on others to go grocery shopping for me or run my errands, barely leaving the house, hell! barely changing out of pj’s these days and keeping my young, vibrant, healthy boys locked inside with me because I’m high risk? Completely panicked to go outside, feeling eerie and overwhelmed to do basic things like grocery shop or put gas when I do decide to be brave enough to attempt a field trip, panicked to let my kids outside or to be around friends and not even seeing my parents for months when they literally live streets away and if so, is that truly even considered living? If we continue to “honor” what this virus requires (which is stay inside and completely isolate), is that really living? For anyone? Parts of me feel vindicated that now the world finally gets to walk a mile in my shoes (when I say WALK a mile that is completely for theoretic and rhetorical reasons btw-we all know I’m not walking many miles these days literally), but seriously, apart of me feels like I’m looking at the world like why is it so bad to stay home a lot? Why is it so torturous that your life had to slow down momentarily? Why was it that out of the ordinary to expect basic human cleanliness like washing your hands, no touching your face or mouth, containing your coughs or sneezes, and staying at home if you don’t feel well? How or why did it take a global pandemic to call people out on basic everyday hygiene practices? Why did it go to these extremities to get people to see how ones irresponsible actions can have grave consequences for another? So the entire world had to slow down… ironic to watch now as my whole world came to a screeching halt a few years ago and the world didn’t slow down for me a bit.
As this lockdown slowly comes to a hopeful end… I look back and there was such a whirlwind of events in what was actually a very short amount of time. Right before the lockdown was officially announced, I had been dating someone new for a couple of weeks. Let me just tell you that a “quarantine relationship” ages in dog years! Right after quarantine began, my birthday was quickly approaching. At the time of MY birthday becoming a quarantine celebrated event, I never would’ve imagined that we would’ve still been in quarantine for every other important event that should’ve happened-but didn’t thanks to the lockdown. My older sons 18th birthday-celebrated in quarantine with just the people he lives with, senior trips cancelled, senior prom cancelled, and now a commencement ceremony that was technically cancelled but is now rescheduled for mid July-not to mention a graduation party we had been planning in Hawaii for about a year already…all cancelled. As I look back on the devastation I faced when I felt my whole life changed overnight thanks to MS, I feel horrible that my son will never forget his senior year either. All 2020 graduates will NEVER forget their senior year and they will never get the proper do-over. Senior year will never have the memories for my son as my senior year did for me. My biggest hope is that my son, as well as everyone else sharing in this disappointing and devastating time, can always remember what this has taught us all about life and family, about patience, about gratitude, about coming together, and about slowing down and they can use these lessons in positive ways as they transition into adulthood.
I think the best post I’ve seen throughout this whole ordeal (since we all know idle time makes for amazing keyboard cowboys) and one that hit home quite hard for me, personally was: “I understand people have no idea the dangers that immunosuppressed people are in with any type of contagious illness. I didn’t care about MS and being immunosuppressive until it affected me. I get something like a simple cold and it takes me out for 3 weeks now”. This post hit home for me so much because even as someone with MS, even knowing I was immunosuppressed, I myself didn’t really realize the true blue effects of being immunosuppressed until I had my surgery last year… When I took 5x longer to heal than someone would have had they been my age BUT without a chronic illness looming. When my dissolving stitches did NOT dissolve as they should have and there I was having to have stitches, 6 months old, literally unstitched and yanked out (painful? FUCK YES!!!!), but completely normal for someone in my shoes. So basically, we MSers primarily live our lives in a forever quarantine, we exist in our own bubbles, we always wash our hands and are always extra mindful of cleanliness and hygiene in general, we frequently avoid uber crowded places and anyone seemingly showing any remote signs of a possible sickness that could be contagious and we NEVER want to intentionally be around anyone or exposed to the sick in general… period… not just COVID-19… We are fragile and whether the world is slowing down or being mindful around us, those requirements for us are endless and have had to become our permanent way of life. It is unfortunate that while the world may want to rush back into normalcy as quickly as possible, nothing really changes for us…

2020

2020

Every “happy new year” brings many promises of change, a new year to right wrongs, a new year to start fresh, a new beginning and 365 more days ahead of you to be the best that you can be. 365 more days for potential “collisions”. I know I was so ready for 2019 to be over. It’s like subconsciously my mind just felt like I so needed the year to end because I was so ready for a fresh start (I’ve taken A LOT of steps forward in 2019 but I also took a lot of steps back and many of which I didn’t even recognize doing in those moments). I was so ready to move away from the desolation I kept finding myself in the middle of. My mind somehow convinced myself that once the calendar year expired-all my troubles would just magically disappear?!? Placebo, much? I would finally JUST be taking steps forward and no longer allowing myself to regress in areas that get challenging… Even when I am weak. I just felt so down in 2019 in every area under the sun-I just needed that 2019 grey cloud to end… to be over with… to disappear forever… I desperately needed the devil to exit my entire life for good. I’ve never welcomed new beginnings more than I eagerly anticipated waking up in 2020. I felt at rock bottom for the majority of 2019 and I hopefully looked to 2020 to shed some sunshine on my life (I mean there’s no where to go from here but UP?). As 2019 quickly came to a close, I realized it wasn’t just one year that I was anxiously waiting to end-it was an entire decade that was now coming to a close as well.
In the last 10 years, I faced maaaaannnnnny ups and downs. The irony of it all is that I started the decade as a single person (I was actually knee-deep in a divorce by the end of 2010) and now here I was welcoming another beginning of another new decade and single yet again (fucken eh).
I spent most of the last decade in a relationship and while that relationship is no longer, it was no doubt the one relationship that taught me the most lessons, tested me the most, forced me to make the most compromises, caused me the MOST tears I’ve ever shed in my life, and ultimately showed me the most about myself…. I mean, once I realized how much I had lost myself and was able to get back to being my old self… I watched my younger son go from being my brand new baby to an awesome little boy who is now anxiously awaiting middle school. I watched my older son go from being my only child to being a fabulous big brother to being an awesome high school athlete who moonlights as my amazing caretaker who is now anxiously awaiting college (holy shit, just even saying that out loud still doesn’t even seem real to me). I’ve definitely taken my share of losses along with the wins throughout this journey thus far. The biggest “L” in the last decade would have to be my diagnosis that came in late 2017 and like with many of my lower points-I tried to extract as much good out of the low point that I possibly could.
2019 was the year of the pig in Chinese astrology, I am a pig. I was excited and hopeful for what the year would bring. Fortune, good luck, happy vibes, and positivity was pretty much all I was looking forward to revelling in (“those with no expectations will never face disappointment”). I believe when I first read about what the year should’ve brought I was completely excited but as the year progressed I realized it was one thing going wrong after another and any and everything that could go wrong, would. By years end, I realized it wasn’t that the year wasn’t filled up with many great gifts-it was that what the gifts looked like in actuality versus what I expected in my head (they always say expectations is the root of all disappointments, right?) were quite different… Flawed in the beginning but in the end, when I realized what the gifts actually were, I was mind blown. The gifts I received in 2019, the year of the pig, MY year, were life-changing. The gifts were painful, embarrassing, humbling, and ultimately life-changing because it wasn’t a bag of money that just fell out of the sky (since I prayed for help in my financial situation), it wasn’t a man who came riding in on a white horse to save me (I had to WANT to save me), it wasn’t winning all this money thanks to my wonderful gambling addiction, and it DEFINITELY wasn’t any of the people in my life who wronged me- coming back to make amends (closure is owed to no one and more often than NOT, you get over the things that have broken you the most when you have to learn to forgive someone who was never even sorry). It was painful realizations about people I loved and trusted and poor decisions I’ve made living my entire life in fight or flight mode which I don’t know how coincidental it is but living like this triggers your nervous system constantly via the adrenal glands so this did make me question if there was any relation to my MS I suffer from present-day? Anyway, I realize the life I was born into wasn’t my responsibility but how I’ve moved through that life and will continue to move from here on out is MY responsibility and knowing and learning this about myself was the greatest gift I could’ve received… A friendly reminder that everything happens for a reason and everything that is happening is meant to happen and that holding onto things out of comfortability or convenience is the biggest disservice I am doing to myself..
I also decided I wanted to start a subcategory of blogs on my page called “NinjaTaxi Confessions” (same as my license plate: NNJATXI). I figured, I always have MS (duh!) so all of my blogs do not necessarily have to be about MS directly or always about how MS has directly affected or changed my life…. MS is always with me after all, right? Sometimes, more often than not actually, sometimes I just wanna vent about random shit, sometimes I feel the need to just purge what’s on my mind. While MS is always on my mind too, most times I’m just wanting to vent about some dumb shit from work, or someone or something that’s irritating me, or the latest most irritating DM received?!? You know, petty day-to-day shit. So here’s to the new year and cheers to the new opportunities and experiences. 2020, I’m setting myself free… Let’s get it!
-A hungry lion does NOT stay hungry long…

When I got sick, we ALL got sick

When I got sick, we ALL got sick

I recently re-watched the second season of Siesta Key (yes, this is one of my many guilty pleasures) in anticipation for the upcoming season 3. I did remember when I had originally watched it the first go-around that one of the characters’ mothers had MS. Now, being a little over 2 years into my own journey, I was able to relate much differently with what MS moments they did share on the show. I think the biggest relatable aspect is what the mother feels at times-it is a fine line between NEEDING help from someone, WANTING to accept the “help” that is available to you, and NOT feeling like you are the biggest BURDEN on your child’s life (if you are a single parent and your only options for help at times are your children). Dealing with an unpredictable chronic illness on the day to day is tough enough… Without a spouse by your side every step of the way, makes it that much more difficult at times. I don’t know what it is but something about depending on your significant other versus your children/child seems much more realistic (normal) and seems like the acceptance of this help would come with a lot less guilt attached. The scary aspect of re-watching this show is that at the beginning of the season, the mother is still mobile and by the end of the season-she is in a wheelchair. I never like reminding myself of what the worst-case scenario could possibly look like with this sickness (reality>optimism).
I often think about how NOT normal my 17-year-old son’s life is. I watched the show and quickly realized how NOT normal her daughters’ life quickly becomes as well. I felt like I was potentially watching what this sickness can do to me especially with regards to the future (hopefully NOT near future) and it made me worrisome moreso than I already am about how much my son’s whole lives will be impacted by MY diagnosis. It is not normal for a teenager or even young adult to have to take on the position of a parents caregiver and caregiver of the sibling/siblings at times as well. While many children eventually end up the caretakers for their parents, it is very unfortunate for all involved when a child is still a CHILD and has to take on the role as a caregiver. I used to look around and feel bitter because of this, now I look around and know that this is just one more thing, one more tool my son will have in his toolbox that makes up the awesome being that he is and will be to anyone who ends up in his life or crosses his path (finding that silver lining)…
This winter has been kicking my ass! It’s crazy to me that I’ve already been through 2 other winters and yet this winter seems to be unusually hard on me. Its bad enough Vegas winters has it looking like 10 pm when its only 415 pm in the afternoon, but the literal second the sun goes down, it is instantly freezing and almost to the point of unbearable for me (like I have barely been leaving the house once it gets dark). I’ve also been napping randomly-and by random I mean, waking up and then realizing I was in the middle of doing something prior to now realizing I had fallen asleep (thank god I didn’t go turn on the stove or something). This tiny irritating and inconvenient “cat nap” habit which randomly happens and usually unbeknownst to me has actually really helped with my continual energy levels throughout the day which allows me to do things in the day and the night if need be (as long as I’m all bundled up and with hand warmers of course)… Prior to the recent cap nap attack episodes, I was limiting myself to either plan things for that day (to crash at some point meaning the day is over for me as well as everyone involved) or charge up all day and have plans for that night. In the end, I realized I was the one kinda limiting myself but only because I am always overly cautious to not push myself to the limits because of how it affects those around me (no one wants to have a whole itinerary planned and have moms issues ruin it for everyone by cutting the day/night short)…. My son and I eventually came to the conclusion that when cold outside, my body must be constantly working in overtime to keep warm, thus resulting in completely draining me whether I’m doing something or just sitting doing absolutely nothing, therefore causing the overbearing sensation to sleep and recharge. When in Rome I guess…
My family was also here in town for the holidays recently. I was so excited for their arrival and a little relieved as well because at least that meant I would be completely distracted from the fact that I haven’t been single for the holidays in 7 years and I really really didn’t wanna think about this. I always hear how hard the holiday are for certain individuals… This is usually the folks I feel are battling with difficult circumstances behind closed doors but not necessarily the sharing types who wanna discuss it (ie-breakups-financial hardships-loneliness etc). Something about the holiday season invoking deep-seated unresolved issues causing people to feel uncomfortably incomplete and lonely resulting in depression or depression-like tendencies. I didn’t wanna spend my first-holiday alone feeling like this so I mentally prepared myself for everything I felt would be a potential trigger. So we were all just uber focused on decorating the house, gifts for my small ninja and spending much-needed quality time together-that is what he holiday season is supposed to be all about after all, right? But more than anything I just didn’t wanna be so idle that I ended up dwelling on things that throw me into a downward depression spiral. So I was very excited for my families arrival and desperately hoping that my energy levels and walking abilities would allow me to partake.
Everything went great! I was able to hang out with family nearly every single day that they were here, visiting them on the strip, eating at all types of fancy schmanshy places, and gambling till the wee hours (I can’t even remember being awake till 3-4 am for something other than insomnia or MS related). The kids and I had such great opportunity for quality time with each other and with the family and in between it all I was wrapping gifts for my baby. I had a real Christmas tree-first time since 2006 and while it had the least amount of present under it that I have ever seen… This Christmas was truly priceless for us all. I think the experience as a whole was great for everyone (especially ME), my son’s got a break from always having to watch out for me because there were many other eyes to do so, my family got to see that me and my boys do have it all together but were impressed with how well my boys have stepped up with the cards we were dealt, and my family got to experience Nicole 2.0- in its full glory-the good, the bad, and the ugly and that’s what I needed… To realize that everyone is ok with walking slower with me, that I don’t always feel well, that I take many breaks and need to sit often, that I can’t walk long distances, that my legs don’t always do what I want it to, and that now that I have MS, in many ways we all have MS… Or at least have to deal with the circumstances of MS as a unit and that it’s all OK… Everyone is OK with it (so I can go ahead and accept it a little more for myself every day and feel less and less like a burden and TRUST that it is safe to share this with others). I hate having MS, I hate how it’s changed my life, I hate telling people and usually don’t even tell people, I hate how its compromised many areas of my own life but I hate MS the most for the compromises it requires of EVERYONE around me.
I guess I will never truly know if my son’s decision to stay here and go to college was at his own discretion or if a small part of his decision had to do with my condition-whether as it stands or considering future progression. I can’t deny that him staying here for college and remaining living with me excites me beyond belief, not only for my fear of primarily living alone but also financially. But I will always wonder what path he would’ve taken had MS not interrupted our lives at all.

Year 2… Gratitude

Year 2… Gratitude

Thanksgiving 2019… I’m just THANKFUL. Period.

Thankful for all the tribulations-so I could see how strong I really was, thankful for all the endings- so I could see clearly and appreciate and welcome new beginnings, thankful for all the tests and lessons- so I could remember what is truly important in this life, thankful for those around me-so I could stay humble and hungry, thankful to see the light at the end of the tunnel-so I know I’m gonna make it out on the other side. I’m SO ready for 2020. Ready for new beginnings and a new ME. Ready for a fresh start. Ready for the next chapter…
The Thanksgiving season is usually a time for everyone to put forth their gratitude for the every day lives they live and for everything that they are blessed with and grateful for….
Thanksgiving, Novembers’ in general, will forever have a different meaning for me because, after 2017, November forever became the anniversary of when I would’ve heard the worst news ever and when my life would’ve instantly changed forever. November marks my diagnosis anniversary. So while many people far and wide are coming together with their families to celebrate the annual tradition of turkey and expressing and being thankful for all that you supposedly have, November and the idea of being “thankful” in my world is quite different now. While I do participate in the traditional Thanksgiving festivities with my kids and with my family, after my diagnosis my level of thankfulness for the everyday little things that people often overlook has drastically changed. In a weird way I almost started to resent the idea of a “Thanksgiving holiday” because I very quickly realized that the laundry list that people tend to announce that they are thankful for are quite often things that are just sheer luxuries in life (AKA petty shit) and that the reality is that nobody walks around feeling like they need to be thankful for all of the little things that you only realize are big things once your world is turned upside down, once you realize how grateful you should’ve been (past tense) for something that you did with ease once upon a time… When what was once easy everyday things, became challenges you now have to conquer. When every day brings new or different challenges that you are never able to mentally or literally prepare for. When you bypass all the little things that you should actually show grave gratitude for daily but you only realize how detrimental that lack of gratitude is once it has become a luxury of your past… I was once one of those people… now I’m thankful every minute of every day. Thankful for all of the little things. Thankful for all the “wins”. Thankful to have gotten thru errands, thankful to have sat thru sporting events, thankful to have completed an entire workday, thankful when I’m able to cook dinner, thankful to have walked around the mall, thankful for grocery shopping alone, thankful for a clean house, thankful for all the things I am able to achieve that I once didn’t think twice about doing pre MS. Sucks that it took MS to give me the perspective I needed.
Prior to November 2017, I definitely do not think that I was as thankful every day as I am now to just be able to wake up and get out of bed every morning and walk to the bathroom on my own and unassisted. Perspective… This is not something that makes everyone’s “what I am thankful for list” when Thanksgiving season does roll around but in actuality, it is these types of little things that quite often go overlooked that every one of us should be THE most thankful for. Gratitude shouldn’t only be expressed on one day of the year. And for many people in situations similar to myself, gratitude isn’t a one-day-of-the-year kinda thing… When all the money in the world CANNOT change your circumstances… Perspective becomes your best friend.
Moving on, with the 2 year anniversary upon me, I just underwent my annual dose of MRIs. While I still absolutely hate being in that scary, loud machine where I feel like the walls are closing in on me, I was very happy that there were no reported changes. So my initial, year one and year two MRIs are all identical with no changes, no new activity and no new lesions. This is definitely great and exciting news and helps keep my mental part of the process on track just to hear this type of findings. Does that mean I feel exactly the same as 2017-NO, it doesn’t. But it does mean I can continue pushing forward because that aspect is not bringing me down in addition to the actual physical aspects of the illness itself. I can continue to grow and learn and push myself on the path of being a better me-Nicole 2.0. I have never felt more content with life. This isn’t because I have someone by my side or because everything in my life is going absolutely perfect. I am content for the first time in my life because I actually did the work. I worked thru my troubled past and recent heartache and used 2019 to work on myself and to strengthen the relationship I have with myself. I found solitude in things I once thought were completely frightening or intimidating and I found peace and acceptance in my chaotic world. And with this newfound sense of peace and clarity, I was able to work day in and day out on being the best version of myself and I continue to do so.
Everyday with MS brings different challenges. Some days more than others. But every day I wake up knowing that everything we have is a gift and that each moment we experience is time we will never get to spend twice. Spend it wisely…
-“Gratitude makes sense of our past, brings peace for today, and creates a vision for tomorrow. Gratitude is the healthiest of all human emotions. The more you express gratitude for what you have, the more likely you will have even more to express gratitude for.”
-A man who conquers himself is greater than one who conquers a thousand men in battle… Buddha