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Welcome to my World…

Welcome to my World…

Life with MS is a JOB and living with MS is exhausting. It’s depressing and defeating to constantly feel like I am doing as much as I can but still letting certain areas of my life down (it makes things seem as though they are not priority when in fact, they may actually be and there’s nothing I can do about it). Even on the days where I feel like I am winning, I am quickly reminded of an area that is losing at the same time… Letting go of control issues (work in progress), has helped greatly but something about not being able to manage your own exhaustion and energy levels at all is unbelievably frustrating and I don’t think people will ever truly understand that aspect of living with MS until they are actually in a situation like mine (or until they actually take the time to educate themselves and imagine for a moment what life would be like in my shoes OR by just spending enough time with me to experience it in the flesh)… Until energy is actually their currency too, when no matter how much sleep you got the night before, the exhaustion still constantly looms… Until energy is their most precious commodity as well (then you truly understand the disbursement issues, lol)… And you never know when it’s gonna just magically run out and without any warning and overextending yourself is just NOT the same as PRE chronic illness. When pushing yourself isn’t even an option in life no more (at least NOT the kind of pushing yourself that it used to be where you can just drink an energy drink or have some strong coffee to perk up for a few more hours to get you thru-MS exhaustion is so nothing like just being tired), when your own wants and needs take a back seat to the fact that you hit walls out of nowhere and just literally CANNOT go on no more. MS exhaustion is like watching a trainwreck in slow motion (at least that’s what it feels like anyway), where your legs start giving out and walking is completely compromised and walking slow isn’t the only hurdle but now you may be walking crooked and appear drunk, its losing control over the simplest things, vision starts to blur, everything feels weak and you literally want to post up an “out-of-service” sign on yourself… It’s like walking thru the sand dunes in the Sahara Desert with thousands of pounds strapped to you and with every step you take, the exhaustion weighs heavier and heavier until you just can’t go on no more and you absolutely need to just lay down for a quick moment (this is why leaving your comfort zone is so scary since you never know when you will be out and about and regret leaving the comfort zone in the first place). It’s when you cancel something previously planned because you can feel the exhaustion monster brewing up inside, and getting that infamous text like “REALLY?” (as if I really don’t want to go-or as if I really want to have to cancel because I’m feeling drunk exhausted)… and it sucks!!! It sucks that this is my life now, it sucks to make people feel they are not priority, it sucks to constantly make choices that you HAVE to make instead of WANT to be making… It sucks to feel so misunderstood but at the same time, you are so damn exhausted from everything else, you can’t even begin to educate or explain anything to someone… So you let it go, and you just accept.
I do have to admit, overall, I’ve been feeling really GREAT lately. Ever since I started physical therapy, I definitely feel like my energy levels have drastically improved in general (placebo?-I’ll take it either way…). Don’t get me wrong, the day of PT-I literally barely make it home and I definitely can’t make no plans thereafter for the rest of THAT day, but the days that follow are so full of this new glow of energy that it makes it all worth it. I even had my mom dig her stepper from 1992 out of her storage to implement use at home since I do a lot of the stepper at PT. Is this newfound boost of life all to credit to the PT? Who knows? But I do know that whatever it is, I love it! Finding this new boost of energy excited me but it still didn’t change that the reality is that I have MS and so thereby very much so married to every single thing that comes with that…
I still have days where I don’t really leave my bed too much (most days actually)… Especially after a long day or late night but I’ve definitely been pushing myself more in all areas and I one thousand percent feel this is helping with my overall mental and spiritual well-being greatly! My bad days no longer result in bad daySSS that turn into “I’ve been in bed for 5 days” or “I haven’t left the house in a week”… I guess that’s a start. But then a day like yesterday happens where technically I got everything I needed “checked” off my to-do list and I was still somehow reminded that no matter how accomplished I may feel, there are still areas of my life that are lacking just because of the constant battle with fatigue. Getting “thru” everything that is priority-work, kids, errands, house chores, dogs… and still hoping to have enough energy to spare to come home and get dolled up for a night of fun is a thing of the past (I try when I can but more often than not, I end up choosing my comfort zone and believe me, I do wish more than anything that I had someone to share my comfort zone with…). I barely make it thru the “everything” part on most days to be completely honest…
Resilience… What does resilience truly mean anyway? And does resilience always go hand in hand with acceptance? I guess it does for me… Resilience grew a whole new meaning to me after MS… and continues to loom all around me every time I have to just be OK with something that I don’t really want to just be ok with. I’m a fighter, I’ve always been a real go-getter but none of that is applicable with Nicole 2.0. Acceptance, every time I have to act like I’m not just as upset as the next person that I can’t walk faster or that I have to cancel something that was previously planned and now I appear as a flake or that I just always seem to be “too tired” for EVERYTHING. There’s that saying “You don’t know how strong you can be until being strong is your only choice”… Or something like that. Well, strong has always been my only choice (hello, I was a single teen mom) but being MS strong takes on a whole new meaning. MS strong has made me have a much stronger faith in realizing and accepting that everyone in my life won’t stay in it, that every person I do share my journey with still won’t always understand it or maybe they won’t be accepting of it and the lifestyle it demands, and that no matter how much I want certain people in my life or to spend time with certain people, this is MY life now and it truly is what it is. My life now requires a get-in-where-you-fit-in attitude and my loyalty can no longer be measured as to how much I can “show up” for someone or for things because unfortunately my illness is in full control of that and I have accepted that and whoever ends up in my life will have to accept that too. Having an invisible illness is extremely frustrating and tests you every single day in every single situation. Stress is the biggest NO, NO with MS therefore by default, acceptance had to become my best friend. This MS life is like plugging your phone in constantly but it never really moves from the battery life appearing low in red… Like filling up with gas and the needle never really moves from E…

It’s not about what you have in this life, but WHO you have that counts

It’s not about what you have in this life, but WHO you have that counts

I find myself here again… I knew I would hit a wall eventually. Last week was a rough week for me-full of “things to do”…every single day and night….things to do. Nicole 2.0 has mastered the art of NOT making every single thing a priority… She’s usually so great at energy management and reasonably scheduling her time out. Then last week happens, where pretty much everything that was on the to-do list was actually some form of priority and between there NOT being enough time in a day and ENERGY being my biggest contender looking for that KO at any moment… Let’s just say it was NOT an easy week to get thru (PS-I also forgot to incorporate into my “to-do list” the emotional exhaustion this week would bring). But I made it (despite the anxiety)! I made it thru! Showing homes and chauffeuring around clients for entire days, 16 or so 2 story houses literally all across town (I think I drove 143 miles showing these clients around the valley-that’s like halfway to Cali…), stairs, stairs, stairs, running necessary errands at night in preparation for my son’s senior night, painting pumpkins, making Halloween cupcakes, Halloween itself and trick or treating with a happy face on (as if I’m not absolutely dying inside by this point-not to mention the freezing temps that decided to arrive n LV just in time for trick or treating).
By Halloween night I could already feel the zombie mode coming on strong, I already knew it was my wall that was knocking but I also knew I just needed to push and get thru the next day or so and everything would be okay. May I also point out how horrible of an idea it is to decide to paint your face-which ends up taking over 2 hours just for the mouth portion, on a day where you already worked all morning and already had an incredibly exhausting week… Ya, so I decided that was smart?!? FML, right (but YouTube makes it look so easy…)? By the time I wanted to abort mission, I was so pot committed-I finished my damn face… Should’ve just went with a mask this year!! Buuuuttt Halloween is my favoritest day of the year. I literally wait all year to dress up and have suggested on more than one occasion that Halloween should actually be a quarterly thing. I reeeeeaaaallllyy wasn’t gonna let exhaustion aka MS win.
Friday night was my son’s last regular-season game and it was also Senior Night. Parents were invited to escort your child onto the field that night with an introduction and I was just feeling so many emotions all at once. I was SO proud of my son, proud that WE made it here, couldn’t believe we made it here so soon, proud of his dedication and hard work, proud of the young man HE has grown to be. I was also having horrible anxiety internally and NOT trying to show it at all… What if my legs decided to act up at that exact moment? What if I walked funny in front of everyone (the cold weather affects my walking more than the heat)? There was so much running through my mind it was crazy (like I was having so much anxiety-while acting cool as a cucumber, I was actually sweating prior to walking on the field-despite it being like 50 something degrees out). We were the ONLY mother-son duo (guess I forgot to have anxiety about that since I sincerely didn’t realize he was the ONLY one with a dead beat for a dad)… My son is NOT so lucky and I’ve been his mom and dad his entire life. Whatever, it is what it is but I went from having major anxiety and butterflies to feeling an immense sense of sadness (like a gut punch) and through it all I had to just keep a smiling face on and hope that my son couldn’t feel everything I was feeling… I was so done when this night ended but I knew I had to just keep pushing for my younger sons game in the morning and after that, I could finally be at ease.
Or so I thought… Eventually, after the dust finally settled of days on days on days of work (this should be a good thing by the way), motherly duties (this should be enjoyable and NOT exhausting), and just adulting commitments (this is normal for every human), I pretty much blacked out. I woke up Sunday morning at about 6 am and I had no recollection of what just happened. I didn’t even remember falling asleep in the first place but I’m sure when I was in that moment, I thought I was just taking a nap. The last thing I remember was that it was 4 pm on Saturday and we had finally gotten home from football, more football, and a very grueling week… Of course, I wake up with an immense feeling of guilt. I felt like the worst mother alive, this seems to be a trend recently as I continue to struggle with managing my life and battling extreme fatigue.

I am continuously reminded how lucky I am that my sons are absolutely amazing and they don’t look at me like a bad mother at all. It is once again a crazy and humbling thing to have to succumb and surrender to having no or very little control over Nicole 2.0. Will I ever feel I am doing enough when I know I am always doing my absolute best? Will it ever get easy to let go of the control issues I have when MS makes me feel constantly out of control? Out of control of my own body, out of control of my own wants and needs, and out of control for what I can do for others or should be doing in my role as a mother?
After a 14 hour night of sleep, and two more days primarily in bed, I finally felt sorta like myself again and not a complete drunk zombie…
I had a good friend remind me this week about a few things on self-care. While I do lots of self-care in terms of MS-related aspects, aside from MS, I am truly my own worst enemy and harshest critic. Self-care comes in all forms and I must always remember: “whatever you believe about yourself on the inside is what you will manifest on the outside” and “when you focus on good, the good gets better”. My life is absolutely amazing and the people around me are absolutely amazing as well and that’s really all that matters in this crazy life.

P.S.- I have MS

P.S.- I have MS

I started blogging to really get all my crazy, overthinking thoughts outside of my own head… People with MS shouldn’t stress, right? So I figured I would stress less if I wasn’t internalizing anything. I went into it thinking I would just let loose and not have a care in the world… Happily being my LOUD, trucker-mouth, authentic self. Over this last year or so I noticed I started caring more and more about the content of my blogs. Did I swear too much? I should go in and delete all the cursing. Did that statement offend someone? Is this telling too much? Will certain people KNOW I’m speaking of them? Is this one too long? Alll credited to: over-thinker problems! The result was more and more time fell between what blogs I did post…
I don’t know quite where I got so lost that I started letting emails and comments delegate how I would write things in MY own blog…
Anyway, no more of that!
2019 has been unbelievably trying on me. And I am in so much need of a verbal vomit session right about NOW! I swear since I got diagnosed everyone and their mama has told me at one point or another that I need to pray (“pray about it”). I’ve never prayed more in my life or talked with God more in my life as I have since I’ve been diagnosed. The funny thing is that my life as a whole kept going downhill-or that’s how it felt anyway?!? (I guess I always assumed praying meant shit would get better before it got worse?!?).
It gets hard to not question EVERYTHING when I feel I am finally at a point in my life where I’m tired. I’m exhausted with LIFE. I’m just worn every single day. I’m not always physically beat, and it isn’t just mental overload. I’m talking tired like tired of life… In general. I have stress but technically can’t or shouldn’t be stressing about anything. I have normal monthly bills and with no money currently coming in-but then all these unexpected necessary things arise that I have no choice but to care of… I’ve never felt more in my life, like in 2019, that I have truly just let Jesus take the wheel. I’ve surrendered every part of me, including the part that wants to keep asking “why me?” and “when does it or will it ever get better?”. So why do I sit here wondering why when it rains it fucken pours for some people? (Hello, that’s me right now!).
In a nutshell, 2019 has looked like this thru my lenses… I go through a hellish break-up with someone I thought would be in my life forever. I was left with A LOT of debt due to this person and despite his promises of paying me back for everything (considering my already financial situation), of course!!! I never heard from him till this day… regarding sending money anyway… Then I had a very trying surgery and a long, grueling recovery. This brings me into about halfway of 2019 (keep in mind -in Chinese astrology, I am the year of the pig, which is this year, so technically “THIS should’ve been MY year”). So at this point, for about 6 months I haven’t really focused focused on my work life-whether mentally distracted and being emo or literally and physically laid up and unable to work. Either way, I was definitely NOT putting the time and attention that I needed into working. My job works like-if you work hard today or right now-you may have a check in 30-45 days. I knew one day, someday the NOT working trend would catch up to me and bite me in the ass royally…
So I’m definitely feeling it. After finally feeling recovered from my surgery I went to Hawai’i twice in about 60 days-awesome, yes! expensive?, HELL YES! So now I’m definitely falling way behind. I return home from the second Hawai’i trip to a boiling hot house (yay my AC went out when it was still triple digits outside). Obviously, I had to take care of that ASAP…$$$$$. A week later, I get a notice from my HOA that my solar needs critter guard (I guess pigeons nest under solar panels? who knew right!!!)$$$$$. Then a week after that my garage door takes a shit and I need a whole new garage door system (after all, of course, we ONLY use the garage door for access to the home) $$$$$. Then that finally brings me to this week when my son got into a car accident on his way to school and his car ended up totaled. Obviously, ALL I cared about was him being fine but now dealing with the aftermath is frustrating and of course, costly $$$$. Like everything else in 2019…
I’ve never felt more like I was constantly bleeding money in my whole life. It is a constant series of unfortunate events that are all resulting in the necessary calling onto the money tree… Life is funny tho. And I have NO money tree in my backyard.
So here I am wondering if I didn’t pray enough-or why else would so many bad things be happening around me and all calling on the same thing from me…$$$$. What are the lessons in everything that is happening? Why is having MS not enough to exempt me from some of this other BS that I totally could’ve just went without…
So, in the midst of my chaotic life that I seemed to have absolutely NO control over, I decided to watch a movie someone told me about. It totally hit home for me and the timing couldn’t have been more perfect. I then watched this movie at least once a day for the days to follow and even adopted some of the techniques that I took from the movie as far as relaxation/meditation methods, things to say to yourself when certain things start to cloud my mind, and to just be more self-aware of taking an overall more peaceful approach to the everyday crisis that may be my life at the moment. I realized so much that while I may have come to terms with the fact that I have ZERO control over my MS, and when it will ever rear its ugly head, a huge part of me still desperately tries to control every other part of my life and that is precisely where I still struggle and tend to cause myself more stress than I should allow. When I say the laundry list of the chaos of MY 2019 out loud, I want to remind every struggle that I already have MS. But it’s me who needs to realize, no one cares that I have MS. My struggles do NOT care that I have MS. Being a single mom does NOT care that I have MS. My bills do NOT care that I have MS. Having MS doesn’t exempt me from life’s unfortunate situations or dark times. It is a very unfortunate thing to have to captain thru life with MS period. And when shit happens, it sucks. But having all the money in the world wouldn’t take away my MS… Wasn’t that the real lesson to learn to live with all along?

Sometimes You WIN, Sometimes You LEARN

Sometimes You WIN, Sometimes You LEARN

My son had been telling me about watching the Lucifer series for a little bit now. He had gotten through the 4 seasons on Netflix pretty quickly so I assumed it was a good show. Eventually, I had run out of things to watch on Netflix anyway so one night I decided to start Lucifer. It was about 7 or 8 episodes in that like a lightbulb went off above my head, everything clicked and I finally realized why my son had been telling me about this show for so long. It was as if I had just walked out of the most intense therapy session I had ever been in-I had an epiphany. I don’t know if I felt feelings of astonishment or decrepitude in my gut or just sheer embarrassment and a sense of weakness that these loathsome traits had somehow become ME…. And that it took my child to really bring that to light (it seems the older he gets, the more life lessons become crystal clear to me).
It wasn’t just the fact that there is that whole “Law and Order” and crime-solving element that I assumed he knew I would enjoy… (guilty pleasures) Nope, we got deep… I figured out 7-8 episodes in that it was also the fact that Lucifer Morningstar, as a character on this show, often feels very misunderstood, very pre-judged in every situation he encounters, questions his own intentions and ethical gauge majority of the time, spends his whole life bitterly resenting his parent(s), constantly fills voids with meaningless and/or risque’ behaviors, and everyday questions why the people turn to GOD so much. Navigating through life becomes more and more difficult when this is your outlook-when you are operating under the sheer guise of ANGRY-when this is the baggage you carry with you at all times, and when this is the basis of every decision you make. Eye-opening that I carry these types of ugly baggages, eye-opening that as difficult as my day-to-day life has become, I am definitely also CONTRIBUTING to my own struggles as well just based on the fact that I didn’t and don’t always have the right attitude and spiritual energy for the battlefield I face daily.
Yes, I love arguing with the TV and playing pretend DA while I watch “Law & Order” and other like shows and all (I’m also a judge when UFC is on and a referee on Saturdays and Sundays in the Fall) but I actually couldn’t fathom just how well my son actually knows me. Not like knows me, like knows I love Dutch Bros-medium flapjack-breve’ style-no whip. Like knows me, knows me, like to my soul. Like who I truly am on the inside but understands who I’ve felt I had to become to make it in this cruel world, to conquer the struggles I’ve faced and to raise strong boys that will eventually become good men. Like he knows demons I battle with on the daily, both from the past and present and all without words. Like he knows I can be better than I have been-especially to myself. It’s as if he can read my insides.
He’s always been a very, very attentive child. He has always been beyond his years. He has always put the needs and feelings of others before his own, especially when it came to me and now me and his little brother. All of that has always bothered me so much because I always felt he was never really a kid. He was never really that carefree child without a care in the world-he always had a care and that was his single mom. He’s not a traditional “mama’s boy” as he’s always done equally as much for me as I did for him but as of late, he does everything for me… So the scales have definitely tipped. Kids don’t and shouldn’t have to be in situations where they have to grow up faster than they should. Where they have to mature at high-speed rates because as a little boy, you already feel your primary job in this world is to be the man in your single mother’s life. You have already placed that burden upon your own shoulders. I came to despise the fact that he had already spent his life mentally, emotionally, religiously, and spiritually being my everything, being my rock, being my strength when I was weak and now he had all those responsibilities but now MS required him to step up even more and become my physical strength as well.
It wasn’t just that I was raised in a Catholic household that I carried this constant guilt chip on my shoulder for every move I made, it was more largely due to the fact that as I navigated through my adolescent and young adult life, I always made that extra effort to be the responsible one and do what was right even when it wasn’t easy. I was cautious, always went through every possible scenario before pulling the trigger on any and everything and was even often teased for being the mother hen in my friend groups. Thus the birth of resentment because every RIGHT decision I made, still left me feeling defeated versus accomplished on the other side. My resentment for life, in general, began increasing at a very young age. Maybe it was maneuvering through life with an immense amount of feelings of abandonment by everyone I loved, maybe it was the fact that my first relationship was horrible. In any event, the huge turning point for me was becoming a teen mom. Willingly trading every one of my hopes and dreams of MY future to do the right thing in the situation I found myself in… Knowing I was going it alone.
For a long time, I would talk to God as a young girl. Then LIFE happened and I stopped talking to him. Similarly, with Lucifer, I began questioning why I turned to someone, time after time whom I never felt responded. I questioned why, when I would do the right thing despite the struggles to come, I still didn’t feel any of my prayers were ever answered or even heard. I never felt or saw any signs of relief or ease on the horizon, for me anyway… With every mountain I would climb, I would only come to the realization that I still had not reached the top and all I saw ahead was more struggle. Somewhere in the concrete jungles of struggle, I lost all hope.
I spent my whole life wondering why things appeared to come so easy for others and those around me and I felt like every day I woke up to a new challenge and nothing ever seemed to “pan out” for me, even with different chapters of my life, the struggles all remained and I constantly find myself starting all over again at square one every so many years as I climb out of the ruins of yet another disappointing chapter that didn’t have a happily ever after ending. I felt like I spent a lifetime making the best out of the cards I was dealt, I felt I was constantly making lemonade out of lemons and just when I felt so exhausted of the many disappointments of life… MS came into MY life. MS was the hardest challenge to just magically wake up to one day and with no answers of “why me?”. And it remains a struggle to wake up to that monster every single day but waking up feeling so constricted in my own skin suddenly made me want to re-visit the many chapters of my life, make peace wherever I could. Made me want to re-live situations where I lacked gratitude where gratitude was due, where I lacked humility and empathy, and humanity. Waking up at all had a new meaning, waking up and being able to stand up had a new meaning, waking up and being able to walk had a new meaning… Waking up with MS gave me a new gauge of what struggle actually felt and looked like and this worked as a catalyst for me to explore the many layers of myself so I could consolidate all past feelings that no longer serve me well into one pretty package that I could finally send off for good.
I have since dissected many chapters and revisited some of the most painful memories of my life and this gave me a new appreciation for the future, I felt hopeful once again. I felt promise because for the first time facing difficult things meant I was ready to let go and move on-meant I was ready to grow up! For the first time, I was willing to admit to myself that I wasn’t alone, I wasn’t some poor charity case, I wasn’t the only person who had horrible chapters that they wish they could’ve ripped out of the book entirely, I wasn’t the only person who struggled with issues and skeletons in the closet, I wasn’t the only single mom in the world, I wasn’t the only person with abandonment issues, familial drama, or unmarried at 36. No one, especially the world, owed me anything. I got lost somewhere in between self-pity and entitlement in a world that wasn’t going to pick me up every time I decided to let myself drown.
I spend my days now looking for deeper meaning and lessons in every situation I encounter and I stopped resenting the man above when I finally realized everything I had always prayed for came in the form of a once tiny human who changed the course of the rest of my life. I was finally ready to accept ownership for my part where I let myself down. I have now realized and accepted that I won’t always get the answers that I’m praying for and that the answers may come in many mysterious forms and as long as I’m open to seeing the signs, I’m actually getting all the answers I’m asking for. I constantly remind myself that while suffering is truly unfortunate, I was the only one keeping my self drowning knee-deep in the suffering I chose to carry with me. I was and am the one with all the power despite how weak I may feel at times. My son threw me the lifevest… What I do with it is on me now…

There are many things we grieve that aren’t death…

R.E.S.E.T.

R.E.S.E.T.

Back to my roots… I hadn’t visited home (Hawai’i) in about 5 years. The last time I had been in Hawai’i was for my great grandma’s funeral so that trip in itself was very mundane and that’s probably why I had a bit of a bad taste in my mouth… Plus, A LOT has changed in 5 years for me-to say the least.
I had lots of anxiety. Well actually, I didn’t have quite enough time to have all that much anxiety because I only really pulled the trigger on going about 10 days before we were supposed to leave. But I had total anxiety for those 10 days in anticipation. I had known for about a year that my family was planning to do a family reunion… Initially, I had no intention on going because tickets are always very expensive and being that this reunion would run through a holiday week, I just assumed the prices would then be astronomical… Anyway, my grandma offered to pay for me and the boys and considering I had just spent the last 4-5 months in and out of very dark places between the earlier in the year break up, months of adjusting, a pop-up surgery, extensive healing (bedridden and miserable AF for over a month), oh and still having F&CK3% MS, I figured it would probably be a great thing for me and the kids to get the hell out of dodge.
I had anxiety! Ohhh did I have anxiety. I’ve hated airplane rides my entire life as it is and now I was taking a plane ride for the FIRST time without my “support system” of 7 years (any traveling I have done in the last 7 years was with my ex by my side). I also now have MS and wasn’t sure how I would handle sitting in that uncomfortable seat for over 6 hours. AND I don’t do edibles… so there’s that too. So lots of things running through my mind leading up to the trip but I made it!
From the moment we touched down I felt like I was melting… like literally! I was melting from the inside out. Like my face was melting off from my head! I wanted to turn around and immediately come back to Vegas (YES! I was seriously wanting to leave the crazy humidity in Hawai’i and choose to come back to 110+ degrees, double-edged sword if I ever saw one). I then realized not having gone to Hawai’i for so many years and not really ever traveling where there’s much humidity in recent years was now unbelievably killing me and I was absolutely dying (let’s not even mention my hair)!!! I guess the 10 days prior to our arrival was really stormy and cloudy so the humidity was extra high for our visit, great….
So, me and the kids ended up in my grandmas AirBnB (upstairs) because it had A/C and we remained living like Eskimos in our igloo for the remainder of the trip (I’m sure I’ll hear about the bill eventually- ha ha).
Everything, every part, and every person on this encounter contributed greatly to project reset. Staying in a house with our entire family made my heart so full. Constant noise, chatter, toilets flushing, dryer buzzing, doors slamming, footsteps, laughter, and waking up to the smell of Portuguese sausage and spam cooking on the stove was the best ever for me! For 5 days, I left my eating issues in Vegas and I loved it. I actually ate 3 meals every day that I was there and actually had normal appetites… guess it helps to have raw fish and rice so readily available (staples in the homeland). I sat on the beaches we went to just listening to the ocean and waves crashing, lots of time to think and just become one with my own thoughts and feelings, lots of reflection in between the nostalgia. I reconnected with cousins I haven’t seen since high school and got to see old friends and chat in person instead of always over the phone and through social media. I completed a hike up to a waterfall in Kahalu’u and while I was very proud of self in this moment, the energy I felt beaming off that waterfall and into the pond was indescribable. Totally worth the fact that I was dying and sweating more than I remember sweating in my entire adult life, lol. I’ve done this hike before (the last time I did this hike was actually with my ex), wasn’t dying as much to complete it but it also didn’t feel as magical as it did upon this particular encounter. It was purely magical for me this time and in that moment I felt like coming home to Hawai’i really was where my heart was gonna finally heal, I felt energized and strong again… I felt like it was time to get my life back on track and my clouded vision and broken heart would no longer be running my life and emotions into the ground. For the first time in months, I felt like everything was gonna be OK.
We spent the last 2 days of the trip at a hotel in Waikiki because we wanted to see the fourth of July fireworks shows and we had a reunion dinner downtown anyway. Those last few days flew by and while I was eager to come back to Las Vegas, missed my own bed and of course my hunnies (Harry & Louie), I was really sad to leave as well. I felt so much joy and so full of love while I was there with so much family around that I was really gonna miss waking up to that every day. Miss the beach days, miss the chatty nights (the AirBnB had NO TV so we were forced to actually engage with each other!), miss the giant Jenga competitions, miss the family meals together. I was gonna miss it all but knowing home and my family envoke those types of feelings within me made me realize I can’t go another 5 years without going back to where I root. I cannot wait till I’m absolutely broken inside before I return home.
I knew I was ready to be back at home in Vegas, back in my comfort zone, back at my charging station and all I wanted to do was keep that same energy going once I returned home. I didn’t wanna fall into old patterns and I didn’t wanna lose the feelings of rejuvenation that I felt. Connecting back with my roots really helped me to fill some of the voids that were absolutely plaguing me. Plaguing me to the point of depression and self-destruction. Plaguing me prisoner to a place of self-pity and wallow allowing my entire life to fall apart around me. Home helped repair the broken pieces of my heart and gave me a better perspective on how I would go about rebuilding my broken life.
MS is a great crutch to blame when your life is completely falling apart right before your eyes and you just don’t have the strength anymore to fight. I pushed the necessary RESET button on my entire life and visiting home was my necessary catalyst. AND my son got his first tattoo… Woohoo!
-Home is truly where my heart healed xoxo-Ku’u home O Kahalu’u

The Balancing Act

The Balancing Act

At 18, I remember being a Senior in high school and working full-time at the mall. Went to school till about 230pm, sped home, took a quick cap nap, and was at the mall by 430-5ish to work till the mall closed, came home did some homework, definitely talked on the phone till way too late (you know back when you had to have the longest squiggly cord so the house phone could stretch into your room and you could close the door because you weren’t even supposed to be on the phone…) , and woke up at 645am to do it all over again. I don’t think the word “tired” existed in my vocabulary at that point. By 19, I was one month out from finishing my Freshman year in college and I was now a mother. I even remember taking my brand new baby in his car seat into one of my finals. So I began the training for the balancing act at a pretty early age. Even still, juggling work and personal time can be challenging. Adulting in itself can be a struggle… Juggling work, family life, personal time, and MS is probably the most challenging thing I have ever faced in my entire life. And this challenge tests me every single day. Some days have more tests than others, little constants that scream out “hey, you have MS, remember” and “hey, that’s another thing on the sacrifices for MS list, duh!”… It is very challenging to continuously fight the good fight with my own head every single day.
Prior to MS, I knew I overloaded myself with way too much. I prided myself on doing the most, in life-work-my kids-everything… But I somehow managed to make it through each day of the chaos I called my life. I had mastered the juggling act by now and I had become a black belt in multitasking. Prior to MS, “pushing myself” to my absolute limits looked and felt quite differently. It was rewarding. It was exhilarating. It was ending each day with feelings of sheer mom accomplishment and pride. It was laying down to rest and smiling on the inside knowing I was fully ready to start the new day the next morning… I no longer remember what that feels like. Memories of Nicole pre-MS, is in the faint distance for me now. It has become like a story I tell of a totally different person that I once knew in another life or something… Nicole 2.0 lays to rest weary, with lots on my mind and layered up with guilt that my tasks for that day will now be over flowed to the next day, guilt that I may not have had the energy to cook dinner that night, guilt that I didn’t do enough or accomplish anything that day, anxiety stricken to wake up the next day and not know what hurdle to expect next… thereby making it completely impossible to mentally prepare for anything (FUN, FUN, FUN, ya, right!). I have now replaced laying down each night to rest with feelings of achievement with overwhelming feelings of disappointment in myself, guilt for wasted days, and an utter resentment toward an uninvited guest that I now share a home with. And by home, I mean body… But why? Why do I allow myself to feel these things? I didn’t GIVE myself MS. Why is the mental mind game of MS just as difficult to navigate through as the actual physicality of the illness itself?
After MS, I find myself having to push myself daily just to complete basic and necessary tasks and while the juggling act remains just as difficult as it always has been, learning to live with and accept the fact that I juggle way less these days and yet the level of difficulty remains the same if not increased and that HAS to be okay. I HAVE to be okay with that. I have to train my mind to forget everything it was trained to know and learn in my entire life about doing life this certain way and lose the guilt of feeling like I’m spending another day doing absolutely nothing. I have to realize and remind myself that self-care is absolutely doing something and that I don’t have to and should not allow myself to feel guilty about caring for myself within an illness I never asked for or even saw coming. My life has changed, it has become my full time job to practice self-care. And every day that I’m not having a “good day”, I have to constantly remind myself that it is okay to honor myself and my body and that fatigue is just gonna win the battle for that day but not win the war.
The increasing prevalence of a chronic illness taking over your entire life can be extremely disappointing, depressing, and stressful. It can bring you anxiety like you have never experienced and make the most social person become a complete hermit. Understanding and vocalizing my struggles helps me to adapt better to my new normal, Nicole 2.0. Having a chronic illness is unbelievably intrusive, I miss my old self and I still struggle every minute of every day with the compromises to the quality of MY life.
♥️The happiest people don’t have the BEST of everything, they just MAKE the best of everything…