Accepting limitations

Definitely need the Sandman to break some traffic laws to get here, after this last loooong stretch of traveling, family heartbreak, and increasing seizure activity. Seizure activity breaking through my new higher dosage of meds really drives home the fact that I need to pay attention to how much my environment and company impact my endurance for the day, which in turn effects the rest of my week. #tbiaffectedme and still does daily. Due to my TBI any emotion I feel good or bad worsen my #chronicpain and #brainfuzz so does any kind of game or physical activity. Seriously. Tomorrow we are going to a conference for motivational speakers, which is great for @jpeuker and I. We both have separate plans in motion to educate, motivate, help, support and inspire as many as possessible. So being this tuckered I'm shutting everything down early. Goodnight my loves, I wish you all an amazing night and sweet dreams. #longdaysmakemybrainfuzzy #avmstrokesurvivor #strengthcomesinallforms #strokeembassador #lifeafterstroke #blessed #greatful #loveafterstroke #givingupisnotanoption #brainfeelslikemush #bettruetoyourself #bekindtoyourself #iamawarrior #beingkindisfree #beingthechangeIwanttosee

Thought of the day...

I'm thinking that once you stop picturing of old lovers while belting out breakup songs and love ballads; and start singing to the negative voice in your head, you're really starting a to win the battle of true self confidence.
I find that the most stirring and emotional vocals I attempt now have the negative self talk voice and old me in the fore front, shrinking in shame and maybe shying away from my sub par vocals as well lol! 😘

Have a wonderful day lovies!

Aunty's Eulogy...

"Love her. Love her, but leave her wild." I believe that was the only way to properly love Aunty P. Her fiercely independent spirit was perfectly matched with her disregard for approval and following the pack. Because of her charisma she is still the only woman I know that would make friends just sitting on the porch or driveway. I know that she's wondering what all the fuss is about, but grateful and moved by the love for her; and impact she may not have fully believed she made. Now is the time for celebration, Aunty is free of pain and probably already playing some jokes on a few of us! I will miss you always Aunty P, and will continue to enhance and pay attention...

to the gifts you talked to me about. I'll practice singing on my back to strengthen my vocal chords like you taught me, but mostly I will do my best to emulate the light you were for all who knew or needed you. Aloha, Aunty!

I Am Not Done, I Have Greatness Inside Me

This definitely isn't what or who I thought I would be at 32, but I'm damned proud of who I am now.  The hospital uses my images in their rehab facility and I'm their marketing. On top of that I have major advocacy groups on social media wanting to collaborate soon, I'm getting my message out, I'm paying my lessons forward, and I'm bridging the gaps of communication or misconceptions between survivors and their care givers, or doctors, even friends and family.  I'm helping people articulate what they couldn't alone.I'm helping them get through another day, and soon I will be saving millions with my best selling book (well you know-once I write it, get published and God willing a big reception of the finished product)! I've got a big future, I am not going to fail. I love you. Thank you.

Trainwreck

Part of living with or recovering from a traumatic brain injury (TBI), is the gift of self analysis. While it can often spiral into obsessesively beating yourself over every single mistake or embarrassing moment, it also provides a clear picture of who you were before. The closer I inspect, the deeper I dig, the more cringe-worthy moments I find. That famous "Keep looking for things to be upset over, and you'll keep finding things" is so profoundly succinct. I really was a trainwreck though, actually I think it's more that I was a unmanned free coasting train gaining speed, and now from the wreckage I've emerged anew. Well, if I am truly not my past or not my mistakes; then neither are you. Though I drop all this behind me and will no longer remain a martyr, I really am so sincerely sorry and regretful for all the damage left in my wake. My shoulders slouch with the weight from all that I wish I'd not ever done and/or said, but that serves no one. From now, I'll focus on growth and putting out as much positive and healing into the world as I can.

Shedding sizes

Lots of ups and downs, hills and valleys while #sheddingsizes but thanks to Joshua James of @metamorphic_consulting and my hypnolapband sessions. This is honestly the most in charge of my weight I've felt since 9 years old. I will admit that it's hard not to get impatient and frustrated with my #shreddedknee #chronicpain #invisibleillness #brainfuzz #brainfeelslikemush that can sometimes force me to be positive about being able to make it to the bathroom and back on my own. It's so imperative to celebrate every single victory, laugh at everything you can, and most importantly #choosehappinesseverysingleday while you #giveeachday100 remember #yougetwhatyougive #youchooseyourday #begreatful #strengthcomesinallforms #blessed #beautyinthepain #avmstrokesurvivor #strokeembassador #youarenotalone #youcanleanonme

Deep Breath...

There's a lot of basic functions that get affected when you have hemi-paresis or paralysis, especially if it's an entire side of your body. In my case I've found it to be ruthless and thorough. From vocal chords to using the bathroom. Five and a half years after my stroke I've found my words, relearned to write, memorize, walk, stand, sit up, laugh, sing, and tie my shoes, dress myself, wiggle my digits, lift my arm...
Yet try as I might I still can't seem to master the art of starting a urine stream. Sure, it's all laughs when you're popping a squat on the side of some obscure highway laughing hysterically with your friend cause it's been 20 mins that you've had an emergent need to go but can't remember how. This is a whole other beast we're dealing with here. This,....  this is FIVE YEARS LATER and I've just spent an hour trying to relive the "I'm about to burst!!" feeling. There's a silver lining, I eventually figure it out. But it's not exactly something you get a pamphlet or therapy session to work on. So when you're having a rough day feel free to use this information to get the laughs you need for a fresh perspective on things. If you can't laugh at yourself, you have no business laughing at anyone else.
I named the post what I did because despite common lore, and my innate pull towards the dramatic; I am not comfortable sharing this information with people. I'm a 32 year old woman, I didn't even consider that my best decade would include disposable underwear. I pray with gratitude daily for finding a love that is not unfamiliar with what goes along with surviving a TBI. It's not pretty, quiet, inspiring, easy, neat, quick no. In fact it's humbling, improvised, humiliating, exposing, painful, and can seem never ending. But you're not alone. You are not your ailments. I wish someone could have painted THAT picture for me.
All this being said... My thirties really are proving to be my best decade so far!

No one's Ambassador

No one is strong all the time. I'm no one's ambassador today. I've been fighting every aspect of life, jumping through their hoops with a grace and gratefulness I thought I'd lost, but there are too many minefields and today my battle is too much for me to bear.

https://instagram.com/p/8Tlu3QBFnX/

Just what I needed

Long love filled productive day, including getting to binge hangout with @morgizzle101 and @jpeuker , and then even had some quick sweet convoys with my loves, too far, incredibly loved @jenni_fun666 @theheartofhumboldt @brittorais and my ohana!! I'm pooped and about down for the count, but today was needed and COMPLETELY worth the #brainfog #brainfuzz and #spasticityflare that are rolling in.... #iminlovewithmylife #couldntbehappier #sweetdreams

#brainfog #brainfuzz #lowmentalendurance

It's not just the mental fatigue which is even more debilitating than you could know, but if you're also battling physical effects that will greatly reduce mental endurance and it makes it almost not possible to find my actual baseline...

Gaining Traction

Five and a half years into this and here are a few tidbits; when they tell you to 'protect the noggin', respect that advice. August 2014 I sustained a minor cocussion among other injuries when we were rear ended. With a still healing brain- recovering from a devastating TBI, I can honestly tell you that nothing about that concussion felt minor. I had rebound migraines for 6 or so monnths, my mental endurance went right back to zero; working it back up or gaining it back again is proving glacial. My memory has changed again as have my focusing abilities, and I'm still trying to understand my new settings. Oh and those weak and fledging filtering connections are void and new ones have yet to be put into play. These are the kinds of effects that you the survivor may not necessarily have control in the rehabilitaion of, I won't ever stop trying though. I believe that this is one of the main proving points for defense of my control freak innate nature. Everything cycles, the highs and lows; not a whole lot about your body and health are permanent or substantially long lasting when the main injury occured to the brain. Breathe, you'll get through this, one slow day at a time. Use the uncontrollable or heightened emotions to your benefit by taking an obscene amount of joy from EVERY SINGLE LITTLE THING that lights you up inside. Express gratitude everytime, to everyone, for everything; you are not the only one effected by and struggling through this recovery.

Enough for You?

If my best is not good enough for you, maybe you need to adjust your expectations. I give everything I have daily, if that's still not enough for you I can no longer carry it as my burden. I give it back to you.

What is brave?

Is fighting the constant nagging voice telling me my loved ones would be better off without me brave? Is fighting the uphill battle of a stroke survivor brave? Is having surgery on my ailing body brave? There are the loudest voices telling me that having to help me in every way is selfish. And less than they deserve. Heaping financial and emotional burdens on my mom seems the most cowardly. I honestly believe that I'm being selfish, not just by finally putting myself and my health first, but by making those in my life compensate for my short comings just by virtue of staying close to me. Everyday I feel a mounting, a growing desperation to let them off the hook and just stop fighting. I feel like my life is only punishing my loved ones, they have to do so much more just to hang out or spend time with me. What is brave? Is brave letting everyone off the hook? Is brave doing the only thing I really know how to do (fight my current reality and earn back my independence)? Is brave faking strength? Is it in lowering the quality of life of those closest to me? It feels like my survival, my fight, my journey is doing the opposite of all that I've ever wanted to do; help and make everyone's life a little brighter, a little more love filled daily.

;

I'm posting this because a lot of you don't know that I struggled with borderline personality disorder (this diagnosis is being reevaluated), depression, anxiety, insomnia and PTSD since before I turned 10 (except insomnia that came in my teens). In 2006 I was hospitalized on a 51/50 and got to experience what Alice felt like discovering Wonderland.
Of course the brain injury has completely exacerbated my mental illness and even through survival and working extensively to get as recovered as I am; I still have suicidal days. Some days I can't see the sense in surviving and working so hard, when I constantly feel I'm draining the energy and resources of my support system. Who am I to make those closest to me stress or suffer so I can get through? Today has been one of my worst recently, it's a combination of stress, med changes and financial worry. Most days I think I know my purpose for still being here and can force myself to focus on that and change my perspective through altruism, some days like today I just can't. There's no more positivity in reserve, I'm tapped out. However, if you can get through, so can I. Thank you.

Yesterday

So obviously yesterday was... challenging to say the least, but as advertised I got through it. Today started out hard, but has since gotten better with communication and raw honesty. Day by day can seem monumental at times, so in those instances I beg you to take everything minute by minute. Cry, yell, scream, walk, run, sing, do whatever you need to inn order to carry on. I share my ups and downs openly so you can know, really know that you are not alone. Together we can make it through all the challenges and lessons life has for us.

Post Op

On December 9, 2015 I finally got knee surgery to stabilize it more and get back out of the wheelchair I injured myself back into while relearning how to walk again. Now I MUST listen to the recovery timeline, I must go at my body's pace. If I rush this or don't let the graphs heal properly and take hold, I'm pretty sure they're not gonna do this for me again lol. This time just gutting it out, working through the pain, and pushing to my very limit daily; will not be my approach. I've got to do this right and be patient with myself and body.

Thank you again Cristen!

Thank you again @ceedub7676 for this reminder. "Ho'omau is the Hawaiian value of perseverance and persistence. In practicing this value, we become more tenacious and resilient, and thus, more courageous. Ho'omau also means to perpetuate, and to continue in a way that causes good to be long-lasting."

Great Start

Not even 10 am yet and I'm journaling again! It took a couple of years but I'm so much more bolstered emotionally and confident in myself today... Instead of fighting to go back to sleep I took advantage of the early morning with some am social networking (done to help others that are fighting), breakfast made for myself, and now the realization that journaling is an integral part of me and taking that moment of realization to climb back on the mountain and start climbing!

New project

https://youtu.be/uTuHryFoMeo

6th Anniversary...

I have to take comfort in the fact that my 6 year stroke anniversary passed without me crumbling. This was the first year that the anniversary of my stroke (2/21/2010) did not tear me down. It passed without notice, I'm so far from where I was that I really am learning how to just enjoy everyday, and I'm amazed with the quality of life that I have now. It's only getting better.

For all the girls labeled "just one of the guys"

I know what you're going through. Trust me. I have been overweight since I was 9; the ongoing battle of the bulge didn't help my plight I'm sure, but I was always the one they talked to about the girls they actually wanted to date. I was the one always hanging out when no females were invited or expected. The one who was kept at arms length by most of the other girls, but called when they needed to track down the guys. I grew up with the most beautiful women (girls then) that Hawaii and California ever produced. There was always someone the boys were interested in, asking about, fantasizing aloud about at nausea and I was there for most of it. Through elementary to college this was my story with a few friends with benefits or one night stands here and there. With all that time spent around guys not ever being looked at like an actual pretty girl, I developed a very young, immature view on dating. I became what I thought guys wanted; the no commitment, leave before they wake up, keep it casual, smart ass. While some of that was also natural defense mechanisms, I mostly thought I was just playing to my strengths, keeping within my wheelhouse so as to not set myself up for heartbreak. I was convinced I was just not the kind of girl a man could fall in love with. Then I had my stroke and with it all my walls and defense mechanisms of the past got swept away completely and forever. I no longer knew how or had the inclination to play the games. There is no more holding back, pretending not to care or settling for less than what I want or deserve. I am brain damaged stroke survivor who walks like lurch and has a left arm and hand that works like the arcade claw machine, with all my old bad habits and still my own brand of crazy. Once I stopped the games and focused on getting myself better I met a man that not only sees all of me but loves it all. If I can find my person, you will too. Be yourself, love yourself and go forward with honesty. Be honest with yourself about what you really want, how you want to be treated, focus and WHO you want to be; be the best version of you that you can and stop worrying about your relationship status. Once you learn to love all of you, someone else will too. I wish you all the love the world has to offer, but please remember... It starts with you.

Josh's 35th

I'm a bit disappointed in myself today. I had big plans of cleaning and productivity, but after a sleepless night I'm sore and useless. Grrr.

Always Remember

You are the only one of you there will ever be. It'll be a terrible shame if the world never gets to experience all you are capable of, because of your insecurities. There is no one more important in the world to focus on projecting than yourself. No one else can do that. Whatever I am insecure about, I am currently focusing on improving. If it's something permanent, I've leavened to find the humor in it. Taking yourself too seriously robs you of at least a few years of enjoyment throughout the course of your life. Please let us in on who you are and what is inside of you; I for one am looking forward to meeting you.

Ending the night worth positivity

After my earlier post, just getting that off my chest freed me and I had a pretty productive day. I'm resetting my focus and as always ending my day with gratitude.

It's all about perspective

Short But Sweet

I've realized today that there is NO reason that I should not be confident. I survived something 90 percent of people don't and fought my way back through staggering odds. I am better in every aspect of my personality than I was before the stroke. I am proud to be me.

My Birthday

I have always been blessed with people in my life that go out of their way to make me feel extra special and loved on my birthday. This birthday, my 34th, my first birthday on Big Island has had to have been the most surprising and humbling. People that have only known me for seven months went out of their way to combine the Fourth of July celebration with my bday to give me a very special time. My amazing friends that facilitated the relocation to paradise came through like they always do, going above and beyond to show me they really value my friendship. But him, he took my breath away. I have never had the feeling of being spoiled, pampered and completely attended to before. He made me feel like I was the only thing on his mind, and the only person in the world. He gave me creative and thoughtful gifts, which are my favorite. Knowing what a cuddle bug I am, he was super affectionate and gave me warm fuzzies. Even made me my favorite cake from scratch. Other than the absence of my family I think this was my best birthday yet. There was even a staggering amount of online posts from lovely people who took a moment to drop a line. I am blessed.

What was

Love blooms, changes and sometimes ends.

Choosing Wisely

It's only taken 6 years but I'm finally starting to be able to take the days off I need (whether or not that means cancelling plans) without torturing myself, or mentally beating myself up for it. I know some of that is Josh and my loved ones supporting me and loving me so well, but think the other part is the ability to keep up with our new place. It gives me back so much confidence. I love being able to give my family a clean place to relax everyday.

Another for today.

Choosing Wisely

It's only taken 6 years but I'm finally starting to be able to take the days off I need (whether or not that means cancelling plans) without torturing myself, or mentally beating myself up for it. I know some of that is Josh and my loved ones supporting me and loving me so well, but think the other part is the ability to keep up with our new place. It gives me back so much confidence. I love being able to give my family a clean place to relax everyday.

Another Big Step

Thanks to a persistent buddy who never fails to push me when I have no energy to do it myself; I have taken another great step forward. After being cleared by my neurologist, I went to the DMV to get my learners permit. This is the first time I've been behind the wheel since having my license revoked due to seizure activity. I'm feeling a bit anxious for my road test on August 1st and what that means for me going forward. How will this change the outings with my friends? Will there now be pressure to get a vehicle I cannot afford? Am I the only TBI or stroke survivor that finds it hard to resist any kind of peer pressure now? I find it frustrating, embarrassing and unacceptable. Back to the topic at hand though, I cannot believe how fast life is still progressing for me. Everything looks COMPLETELY different than it did seven months ago, myself included. There is still that one battle that I still can't quite get a handle on... my weight. But that's a post for another day. We are going to keep this one upbeat, yay for progress!

hrmmm...

Am I listening to myself or just sitting on my ass? Am I allowing my brain to recoup or wallowing in stagnancy? I'm not sure if I'm allowing myself to process my stressors or just being plain lazy. So far today all I've managed to do is order food, make a couple of calls and...this. Yesterday was good and productive and the day before I was at my boyfriends, so in retrospect I'm not doing all that badly. If you don't count all the shit I didn't get done today lol.

Confidence frees you

Now that I've had over a month, in our new place being be able to keep it clean and keep after it I now have the confidence to learn my speech to text program and start my book… I didn't know what I was lacking was confidence. Confidence can help you reach your dreams take you anywhere you've dreamed of going, and the lack of it can cause stagnancy, depression and worse. What we need to remember, is that confidence is just like lipstick, like putting on pants all you have to do is put it on and the more you wear it the more comfortable it becomes; the more natural becomes to you, the more the confidence emboldens you. Don't forget that just because you don't feel confident doesn't mean you can't be, it doesn't mean that you can't reach her dreams while still finding your confidence… The universe appreciates the effort. This was my first post using the Dragon speech to text program. I love this program, I really believe it's couldn't frame me to be able to be my authentic self as I tell my story… The raw, the real, the inspiring, and the disgusting. I'm so grateful, so blessed, my heart is full and now all I must do is find a way to make my as a real physical recovery have the same breakthrough.

Okay

I had another appointment with my psychologist and was talking to her about all the great things happening. Everything is going phenomenally and I should still be happier than I've ever been. Things are just continually getting better; only I don't feel it anymore. I'm content but not HAPPY like I was or thought I should be. She went on to explain that big changes positive or negative are stressors. More over, I'm probably just starting to really process all that is going on. She led me to finally understand that maybe I just need to try to be okay with where I am and how I feel right now; that I shouldn't put more pressure on myself trying to be or connect with certain emotions just because I think I should. So that's what I'm passing on to you today; feel however you feel. Stop trying to put on the face of what you think you should be or how you think you should be feeling. Every emotion is valid, work your way through them for actual progress.