As mortifying as this is for me and as vulnerable that I feel doing this; I don't think I can call this blog an honest portrayal of life after stroke if I don't share this. Without the Help to Recover program at Easter Seals I would have no idea how common bladder and muscle control problems really are. It would be the end of the world. Even with my new knowledge and daily proof that I'm not alone and dealing with rare effects, it took me much longer than necessary to accept that adult diapers are a part of my journey (for now), and it only effects the way I view myself; not the way anyone else sees me. #Youarenotalone #avmstrokesurvivor. #Strokesurvivor
Thursday, December 31, 2009
Saturday, December 5, 2009
Friday, December 4, 2009
This isn't me feeling blue, this is me FINALLY facing facts. I am blessed in having survived the stroke, to have recovered this much, and I will not give up because I cannot cause more ugly into the lives of those still around. But on days like this I wonder, really wonder, if I'm doing more damage hanging on than I would if I just removed the blight on their collective radars...
You know who you are, thank you for finally respecting me as a friend enough to hold up your end of things, for holding tight and now letting go. I'll always love you, hold you in my heart as one of my best friends. But with that last tether cut I can finally let the idea of us go, let go of the hope that you had not taken this final step because you and I were working toward an "us" together. Thank you. I am free :)
Thursday, December 3, 2009
Wednesday, December 2, 2009
I'm not quite sure why I assumed that once I received my disability and was finally able to be self sufficient again, that.... You know what? No, that's not what's plaguing me right now. Realizing that my window of 100% is (if experts are to be heeded) figuratively closing more and more daily, I'm haunted. I know that no one (not even me) knows what I am capable of, but if that is going off majorities rule, it is something to keep in mind. Now that being said, I'm terrified.
Fear is not something that's going to slow my efforts but is something that can eat away at you if not channeled correctly.
As a matter of fact, I have been feeling the urge to spend some creative energy but couldn't (and this is new for me), couldn't wrap my head around a medium that didn't give me severe anxiety; as crazy as that sounds. But Claire has just surprised me with a charcoal sketchbook set... Perfect timing and a testament to how amazing my support system is now. Hopefully if I taker the time to sketch a bit, I'll be able to sleep tomorrow.
Progress has slowed considerably...
Tuesday, December 1, 2009
I'm not soooooooo sure where this posting will be going tonight... It's 4:23 and I can't sleep. Again. My meds have been adjusted and I'm going harder on my workouts so I should be out like my man here; all in all though this is my most pressing agitation so I see no reason to complain.
My insurance is getting to the final switchover, I'll be on my way to my permanent team of physicians and specialists, and then back on track for my physical, occupational and speech therapies. My bills get paid on time, and there is money for food and toiletries left over. I live with two people who care far more about me than I ever thought I deserved. My family is proud of me and continuing to be more and more proud of me as progress is made. My friends are supportive, encouraging, respectful and empathetic. I have an amazing foundation laid now, it's only up from here!
I think I needed this all this to happen after such a life changing chain of events, only now can I truly recognize and appreciate all that I am blessed to have, to be, and have the potential to become. I have the opportunity to be so much more than I was before the stroke, soooooooo much better as a person. This has been and will be at moments some of the hardest times I've ever faced before, and I am so grateful that I get to come through this and eventually add it to the list of shit that didn't break me. Things that not everyone could handle with a lightness in their heart and still learn the lessons and absorb all the beauty that comes with pain and hardship and tragedy.
Monday, November 30, 2009
Sunday, November 29, 2009
Saturday, November 28, 2009
Friday, November 27, 2009
Thursday, November 26, 2009
Wednesday, November 25, 2009
Every new adjustment we need to implement, devices I need to start using again, all feel like failure. I know it's not; and miraculously the love of my life knows it's not as well. I however find myself deeply panicked... I told him I was going to get better, I do not have it in me to quit and I'll fight for 110% EVERYDAY, until my last moment, but am I being unfair to the man that loves me but signed up for a progressing partner? He tells me that I'm the only one that has a problem with the things I cannot do again (yet), but I can't ignore the fact that since we've been together my mobility has decreased. The way I was pushing my body would have caused it regardless, but miraculously I have someone willing, more, wanting to be the one who helps me do what I cannot yet. There are soooooooo many not as fortunate as I find myself, I am more grateful and appreciative than you'll ever know but I need to regain my forward momentum so he can have the love he deserves as well. I fear my love may have been accidentally bamboozled.
My prescription has lapsed, due to my mobility issues and unreliable transportation from others I was blessed with prescription delivery. It is an amazing service but for some reason I have been off my meds since Friday waiting for my refills. I know actually KNOW that all of this emotional upheaval and dizzy spells stem from my chemical imbalance but do you have any idea what it's like to know why you're feeling crazy but still have to FIGHT OFF doing something rash because you feel that fucking crazy??!?!!? I can't sit up or walk without it being dangerous because of the lightning storms going on through my body and they make me soooooooo dizzy that I fall. At the moment I'm waiting with baited breath for the knock on my door letting me know that sanity through pill has arrived.
Tuesday, November 24, 2009
Monday, November 23, 2009
Sunday, November 22, 2009
Saturday, November 21, 2009
Wednesday, November 18, 2009
Tuesday, November 17, 2009
Monday, November 16, 2009
Sunday, November 15, 2009
Saturday, November 14, 2009
Thursday, November 12, 2009
Wednesday, November 11, 2009
Tuesday, November 10, 2009
Monday, November 9, 2009
Sunday, November 8, 2009
Saturday, November 7, 2009
Friday, November 6, 2009
Thursday, November 5, 2009
Wednesday, November 4, 2009
Tuesday, November 3, 2009
Monday, November 2, 2009
Sunday, November 1, 2009
Saturday, October 31, 2009
Friday, October 30, 2009
Tuesday, October 20, 2009
Monday, October 19, 2009
Sunday, October 18, 2009
Saturday, October 17, 2009
Friday, October 16, 2009
Thursday, October 15, 2009
leads you to a video of a neurosurgeon repairing a bleed the same size as mine, only mine was located down DEEP in my right hemisphere (where your musicality, rhyming and melodic functions are housed). I've now watched this quite a few times now with a better understanding of what my family and closest friends went through...
Wednesday, October 14, 2009
Tuesday, October 13, 2009
I think I finally figured out why I get so bent out of shape every time a new acquaintance is COMPLETELY shocked and utterly amazed by the fact that Josh and I not only met but fell in love two years into my stroke recovery... The strongest reactions always come from other men. They seem astonished, appalled or stunned; eventually coming to "That's a GREEAAT man you have." With the bewildered head shake. (Don't get me wrong I KNOW I'm THE LUCKIEST bitch on the planet. I pray with gratitude in my heart multiple times daily for our love alone) What I take away from this -and the fact that this is always the reaction I get- is that they don't believe that they nor any of the men they currently know would have ever considered a relationship with someone like me even an option. Maybe I interpret it that way because that's what I believed before, and somewhere deep it's still terrifying me. The thought that (knock on wood) if anything should happen between my incredible Josh and I, that'd be it... No more chances at reciprocated love, I mean after all I couldn't find that pre-stroke, what are the odds it would happen twice post stroke?
Then I realized that all of the people making the daily difference, the ones actively participating in my life and have me as a part of theirs are nearly all people I have bonded with after I had my stroke. You have something valuable, that's why you're still here, people are out there that love you, miss you and want to be a part of your journey... Stay strong, they will find you.
#caregiver #blessed #heseesme #hesmymiracle #perfectforme #loveafterstroke #lifeafterstroke #lovehasnolabels #lovehasnocolor #lovehasnorace #lovehasnodisability #iaminlove
Monday, October 12, 2009
My smile may be crooked now, but it is more frequent then it's ever been, full of love and gratitude, and for anyone who may need one. #happygirl #happinessisachoice #itsallaboutperspective #youchooseyourday #lifeiswhatyoumakeit #lifedoesnotstopforyourstruggle #lifeafterstroke
Sunday, October 11, 2009
Be brave enough to share the embarrassing, the failings, the frustrations the ugly, the honest... It's these named truths that will help someone else.
Saturday, October 10, 2009
#TBIaffectedme I remember after my crainiotomy in 2010 my older sister told me that I had a stroke, the doctor drained 200ml of blood from my skull, and because I waited so long I had lost all function and sensation of my left side head to toe, but if I worked quickly and really really hard I may get some of it back. I responded with "How do I start?" Our doctors and therapists can point us in the right direction, our family, friends and caregivers can assist us with logistics, support, and those obstacles we have yet to reclaim again; but NO ONE can recover for you. No one else can make you better. No one else can tell you how to make new neurological connections so you can move your finger, smile, wiggle toes. No one can teach you how to deal with the overstimulation, find your left hand again, normalize the sound of your laugh again, unslur your speech, communicate your COMPLETELY DIFFERENT perspective on EVERYTHING. I relearned how to walk, talk effectively, sing and enjoy life again with an army of loving supporters at my side, I met and hooked the love of my life and even with all that help I can confidently say that I saved myself, with help. #happygirl #happinessisachoice #strengthcomesinallforms #strokesurvivor #avmstrokesurvivor #loveafterstroke #lifeiswhatyoumakeit #lifeafterstroke #blessed #beautyinthepain #givingupisnotanoption #begrateful #Kindcampaign #takenothingforgranted #tbiaffectedme #loveafterstroke #lovehasnodisability #lovehasnorace #lovehasnolabels
Friday, October 9, 2009
Thursday, October 8, 2009
I NEED to make a giant print of this... It is true though- it is our scars, our triumphs and our lessons that make us unique. It's all that gives us our true beauty, the ability to live and love more passionately and more freely because of all the hard.
Wednesday, October 7, 2009
I lie here breathing you in, trying not to disrupt time or the fates... If I can keep this under the radar no one will see the mistake. No one will see that I'm not good enough for you, and that I do not deserve any part of this healthy, nurturing family we've created.
Tuesday, October 6, 2009
This is what #smilingthroughthepain actually looks like when it's off the charts, not very pretty, I know. This is however more often than not the reality of those suffering from #chronicpain; in my case it's #neuropathy which gets worse with heightened emotions, happy or sad, physical activity, any kind of intense focus (like filling out forms, reading, brain games or socializing). It's hard dealing with an #invisibleillness because people often don't understand or because there are no tangible signs, no visible cues there's nothing other than your grimace to show them what you are going through moment to moment. I'm blessed to have a caregiver who worked in hospitals for over a decade before we met, he often sees my limit of stimulation for the day coming before I process just how fragmented my thinking has become. Before him I would push until I dropped, which would leave me bedridden for about a week on average. One day of full steam for a week of suffering, not a very productive trade off and not conducive for healing an extremely injured brain. I'm still trying to learn my base line- what I can expect to bee able to do everyday without any kind of crash- but you'd be surprised how hard it is to slow to a pace that can allow you to stay conscious of your weaning mental energy... Or it could be that I'm having a rough time recognizing and deferring to the signs my body gives me when I'm pushing it. Food for thought...I'll keep you posted 😉
Monday, October 5, 2009
Funny, I used to say this EXACT thing for years and the universe answered. After becoming an#avmstrokesurvivor and the reality of how much my #tbiaffectedme I realized that I had indeed been given a second chance, reset had been pushed for me and now I am #grateful to be so #blessed to use my recovery to#spreadlove #spreadkindness#spreadknowledge and hopefully clarify some gray areas or common misconceptions about#chronicpain #invisibleillness and become a#strokeembassador and hopefully one day#motivationalspeaking. If I can show one person that #happinessisachoice and#itsallaboutperspective while making you aware that #youarenotalone, #youareincredible#youwillgetthroughthis and #givingupisnotanoption I will consider my journey successful.#lifedoesnotstopforyourstruggle but#strengthcomesinallforms. If you ever feel like there's no one to turn to, please don't hesitate to #callonme
Sunday, October 4, 2009
Is true, we are not ever given more than we can handle. When things seem at their most overwhelming or desperate I challenge you to change your location, listen to a song, do something to take you out of that mindset and shift your perspective back to a direction that's productive for you. #youwillgetthroughthis #youareincredible #youarenotalone #youchooseyourday #youteachothershowtotreatyou #bebrave know that there will always be#beautyinthepain as long as you #staytruetoyourself, #strengthcomesinallforms and anyone suffering#chronicpain and/or an #invisibleillness. I know it can be especially hard trying to show gratitude for the help you get but what about when the 'help' is only making them more at ease and it's only adding to your symptoms..#begrateful and #bekind but overall know that you are the only one that can get you better. You are the one learning how to deal with how#tbiaffectedme and they honestly cannot fathom just how much your life has changed so please try to#practicepatience with your #caregiver they're doing their best. #weareinthistogether #imhereifyouneedtotalk #givingupisnotanoption #giveeachday100 #motivation #inspiration #iamawarrior #naali #nomorestroke #strokeembassador #strokeawarenessmonth#strokesurvivor #AVMstrokesurvivor #blessed#payingitforward #youhavehelpifyoubutask.
Saturday, October 3, 2009
In all seriousness looking back on pre-stroke Chisa, I often wonder why people hung out with me, I was a mess; always manic had to be something to everyone. I gave a lot at first and then focused on you so you wouldn't think to try to dig deeper. I was so insecure that if we were out, I was the out of hand drunk. Funny, but out of hand because if I didn't direct their attention to what I'm comfortable with, they may get a look at something supposed to be hidden. The deeper I look the more I can see that #tbiaffectedme and #survivinganAVMstroke was the best thing that ever happened to me. It really is a #blessing I got a much needed shift in perspective, and saw how EVERYTHING was being taken for granted. Humbled me, I know now it's about the quality of moments and bonds, not the quantity. I'm no longer afraid of missing anything, because I now know I'm always #exactlywhereimsupposedtobe #yourvibeattractsyourtribe #youchooseyourday #youteachothershowtotreatyou #bettruetoyourself #bekind #bekindtoyourself #dontsettleforless #knowyourworth #loveyourselffirst #begrateful #learnyourlesson&move4ward #bethechange #beingthechangeIwanttosee
Friday, October 2, 2009
I got tagged in an IG writers challenge what you see is my very first creative writing attempt since having my stroke. My brain feels tired and fuzzy from the effort, and I LOVE it!
The more I dissect who I was before my stroke, the more and more grateful I become that it happened. I have grown and blossomed into a person that I didn't know I could be. I am proud of who I am now and the perspective I have gained as a survivor.
Thursday, October 1, 2009
Plum tuckered after a wonderful afternoon catching up with some quality (really close) friends, trying not get disappointed that I couldn't even last till the end of the game. What's worse is that my amazing love @jpeuker made a special trip to bring me home, help me get settled, assured me that he's happy to be the one who sees this, who I show all that I am, think and feel. It's a comfort I never knew I needed, so now I'm going to research how to quickly regain the ability to filter out unnecessary distractions, with an ultimate goal of putting together a plan of action to regain control over my mental endurance. However this is a long month of #brainfog #overstimulation #chronic pain #insurance referral issues and most devastating, the passing of my beloved AuntyP... So this shot, this picture is not a cry out for help or fishing for compliments, I promised to document all aspects of my recovery process; the triumphant, bad, and pathetically burnt out. I can't even really keep myself on topic as I write this, hopefully I won't need to edit too much later on. When you have survived a TBI (Traumatic Brain Injury) one of the first things you notice is just how much you used to subconsciously filter out 90% of distracting things going on around you so you don't go crazy with all that inundated stimulation coming at you in every possible direction. It in all seriousness, feels like a full on attack. Best part is that overstimulation exacerbates #brainfog #mushybrain #spasticity #neuropathy and any other #chronicpain. This is a bitter sweet moment caught here, I'm grateful that I got some much needed time with some of my faves, but try as I might, I still had to have my love bring me home early. Learning to listen to my body, but how long until it's unfair for those that love me and are putting in more effort than I can....I'm always doing my best to keep in touch as often as possible. I'm just scared that you all will have gotten sick of the lopsided scale. But if you can, please try to remember that I love and care for you, and am honestly doing the best I can. As the pic shows I'm exhausted. Love you, have sweet dreams loves! #longdaysmakemybrainfuzzy
Wednesday, September 30, 2009
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
Tuesday, September 29, 2009
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!
Monday, September 28, 2009
Sunday, September 27, 2009
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.
Saturday, September 26, 2009
Friday, September 25, 2009
Thursday, September 24, 2009
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!
Wednesday, September 23, 2009
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.
Tuesday, September 22, 2009
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
Sunday, September 20, 2009
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...
Saturday, September 19, 2009
Friday, September 18, 2009
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.
Thursday, September 17, 2009
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.
Wednesday, September 16, 2009
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.
Tuesday, September 15, 2009
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.
Monday, September 14, 2009
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.
Sunday, September 13, 2009
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."
Saturday, September 12, 2009
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!
Friday, September 11, 2009
Thursday, September 10, 2009
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.
Wednesday, September 9, 2009
Tuesday, September 8, 2009
Monday, September 7, 2009
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.