Saturday, October 31, 2009

Miracles happen everyday!

Oooooooh Holy happy dance, I have an appointment for an evaluation with the nurse for the Easter Seals TBI recovery program!!!

Tuesday, October 20, 2009

the point?

I know it's not my job to understand or justify Gods plan for me but I for the life of me CANNOT see the FUCKING POINT in having me learn to sit up, speak to be understood and walk again if the work to get it back actually takes the skill away again? Haha guess the joke's on me. I know how to keep everything in perspective when the cause and effect make sense; but I do not know how to be this person. This woman back in her wheelchair for Lord knows how long, and dirty truth, cannot really navigate a productive day completely on her own yet. Yeah yeah yeah it's just a bad day, things will get better once your MRIs are done, once you start the TBI program, look at the upside... TRUST I GET IT. I'm doing my best, I just don't look into the mirror and see anything familiar anymore. Besides my friends and family, besides my love and two fur babies I can no longer find anything I like when I look in the mirror.

Monday, October 19, 2009

Even being warned that every brain injury is different making every journey to recovery is absolutely unique. That in an of itself can be exceptionally overstimulating if you think on it too long.

Sunday, October 18, 2009

You can...

It just goes to show that you can get through it. We are stronger and more resilient than most will know. Just when we think we've found our limits,we are presented more soul strengthening opportunities and lessons to learn. Know that you can learn the lesson, you are enough to beat this. Get through today,cause the only thing you can do is the best you can do, and you are stronger than this moment.

Friday, October 16, 2009

building up....

Well let's see, today in an order to pull myself up from under the crashing sea raging around and above my head; I made a thank you video for my first intensive speech therapist. I reminded her of the timeframe that I was her patient and reminded her that I revealed my most disheartening and petrifying post stroke hurdle discovered. While on an instinct trying to calm myself by singing (as I have done since I learned to use my vocal chords as a baby)but discovered that there was nothing melodic coming out. It was as though I was reading the lyrics of an unfamiliar song for the first time, robotic,and something I have not been able to recreate since. Without dance and now singing i was at a loss, my cathartic outlets no longer available was imposing and a wall I could not work around or ignore, or simply find a replacement for. I would not, could not attempt to sing for her because what would come out sent me into panic attacks and a spiral into the dark that I was not sure I would know how to navigate back from. She didn't pressure me to sing, instead picked a course of therapy targeting that part of my brain where it not only houses our rhyming, lyrical, and melodic properties but was also as it happens the epicenter, the origin of the weakend blood vessel that burst. She would walk next to me in my new wheelchair and together we would take slow laps around the rehab gym rhyming together, firing words back and forth. I continued that after I was discharged and slowly, awkwardly, painfully (for the eardrums of those within hearing range)I started to sound a little more harmonious, a little more like a human singing. Everyday I sang, I would stand for as many hours as I could standing and singing with all the emotions and fears, insecurities and anger that fill my long all encompassing road of recovery. I recently received a minor concussion in a fender bender on 8/22/2014 and today was the first day since that I could handle music- without it prompting nausea or a migraine. Because if this is new to you as it was for me, you learn that with brain damage still healing from a very traumatic event will not react to a minor concussion like a minor concussion; more like your brain scrambled like eggs yet to be fried or beef so tenderized that it is no longer recognizeable. So I jumped at the opportunity to shed my shyness and insecurities about how I sound singing and recorded a video of me singing her a song that has become my inner mantra. I wanted to shed the pretense of 'oh hey look at how much better I am' and show her just how intimately and magically she gave me back an integral part of myself that if had not been addressed when and how it was, would most likely have died with my emotional boundaries and defense mechanisms that died with the stroke. I have no words to express my gratitude for the staff at The Sutter Roseville Acute TBI Rehab Institution, I will come back and pay it forward if that would be appropriate. The eight or so minute video I recorded is sadly too large to share with her through Facebook and I'm not yet brave enough to load it to youtube so I could post it here.... I wish I was,It was HARD for me to record it without crying, because the parts of me that she helped me find again are the parts that will see me through the rest of my recovery journey willing and excited to educate, inspire and motivate as many as I can along the way. Hopefully I can figure out a way to get her to see it, or grow brave enough to load it here, then maybe she could access it.... Well, after the sharing of the cathartic video has hit a reef I was under water before I knew it and like clockwork my best buddy my twin brotha from another motha called me and with perfect love and support brought me not only above the surface but dragged my exhausted ass up onto the dock. They will never know how much they mean to me. Still want to get my video to Allison...any suggestions?

Thursday, October 15, 2009

A Similar Situation

This link
http://www.sciencealert.com/watch-neuroscientist-completes-full-subdural-haematoma-surgical-procedure

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

This has so many interesting ramifications...

I'll post the link for the article I'm talking about then come back and get into my personal take on all of it.... http://www.businessinsider.com/new-process-heals-brain-after-stroke-2014-10

Tuesday, October 13, 2009

Ohhhh...

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

Promises, promises

This is a late update from February 12, 2015... My love has given me a promise ring, YAY with the next sentence being "you know this means I need your Dad and Mom's contact info now right?" Lol, I am beyond blessed and full of gratitude.

Don't need a reason to...

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

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

Only you...

#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

Paying It Forward...

While being treated at the Sutter Roseville In-patient Rehab facility I was asked if I would be willing to take part in their new ad campaign to help show that stroke or TBI's are not geriatric specific and that they can (and do) treat people of all ages. Most 26 year old women with a shaved head for the first time, trying to find their left side again would not ever allow the public to see them this vulnerable let alone have it documented and used for advertising purposes... I however was gifted this second chance. My social worker at the hospital, neurosurgeon and trauma nurses went to bat for me, advocating for me to be accepted as a charity case...in February. At the beginning of a very long year they fought to have the hundreds of thousands that my crainiotomy and rehab would cost, written off. I had no health insurance which is why I waited so long to go to the hospital in the first place, ultimately making my bleed that much more dangerous and life threatening. How do you payback a miraculous second chance at the life you were barreling through and taking for ganted?... You say yes to the photos, you pay it forward any and every way you can. I found my first photo on their site today... (I'm at the very bottom of the page) http://www.sutterroseville.org/rehab/experience/expect/

Thursday, October 8, 2009

Beauty in the pain

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

First poem since...

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

#Unpretty

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

Reset

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

What doesn't kill you makes you stronger

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

Influence

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

My first attempt at poetry since the stroke

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!

Me vs me

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

Endurance

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