#Joywarrior

MOST RECENT

Last night was another chance to love & be loved. It was a night out of my house w my hubby & my in-loves to celebrate my birthday. It was so lovely & our beloved Bardie surprised me w where we would go. My only request was a place w no kid’s menu or crayons on the table. Score! And I had my place at the table. My hurdle is the food. I want to participate so badly & the pain to get it down is intense & I am stubborn. And I try anyway but I am still a soft or soup gal or feeding tube. My own expectations make it hard to breathe. The word “time” upsets me. And I have to skip meds to participate. It’s so bittersweet. It’s that dance of joy & pain. It’s the tug-o-war. Choosing JOY to feel alive & the pain so ever present. And these people who keep loving me through. Showing up was such a task AND the happy in my heart intertwining in the midst. This bravery of mine is bruised. There was so much magic in the mess last night. My tiny spectacular was HUGE! I couldn’t contain my joy and this f😶cked face of mine forever shows up too. Last night’s chance to love & be loved gives me courage to tie another knot at the end of my rope today. Today I’m in the valley. Horizontal. And I just can’t. Nothing to offer anyone. And holding on to every tiny spectacular second I memorized last night. And the chance I had to love & be loved. That’s how we keep going. Even when we are tired & don’t to. These are the moments that let me breathe when I come up for air. Thisi is grace. Even when. And yet. #Joywarrior #andsoichoosejoy #thisonelife #truth #comingupforair #forthelove #wekeepgoing #findingjoyinthejourney #graceupongrace #beloved #mypeople

And...because laughter is good medicine. It’s good soul food. And the last thing I am doing is wearing a bra! Because even in the dark, there is Light. Magic in the mess! I love you. I love me. I love us! #Joywarrior #teamnobra #andsoichoosejoy #thisonelife #lifestylechoice #letfreedomring #wekeepgoing #joyandpain #laughteristhebestmedicine #soulfood #sisterhood #ilovemytribe #iloveus #letterboard #reallife 💙

I have been working on some dot projects that are more complicated and take more time, and have already missed a day of gratitude trying to maintain a feed pattern. Nuts to that.

Not the kind of tired that sleep can help. You know? #Joywarrior

And this is so true. I am 3 weeks post op today and I am messy. All of me is messy. And the untold story is that I feel broken inside. My 20 minutes a head each day feels less and less. I keep telling my self “rest but don’t quit”, and that feels ridiculous. And I know that I am not the only person on the planet who has felt this way. The other shoe is dropping. I feel this enormous weight inside of me that feels like this burden is too much to bear. Like I am coming up for air and there is no air. I can’t catch my breath. And it’s not just the mental and emotional stomp on my chest. The pain in my head is worsening. And that word “time” is making me so angry and I am so tired. .
My untold story is not a pity party. It’s the real life story of a fallen warrior. Don’t you just feel like this sometimes? I just feel like a fraud sometimes because I can’t find those tiny spectacular moments. I can’t choose Joy because I don’t feel like it. I don’t want to do any of it. I just want to lay in the valley. I just valley. I just want to can’t my breath. I can’t catch my breath. And I am full. And I am so tired. And that’s real life. My 20 minutes is dwindling. All of me is tired. My f😖ck face and all of those nerves are on the warpath again. My ohmyhells are switching to “fuckity fuck fuck fucks”. Pardon my French. My days are too long. Three weeks out & it feels like miles to go before I sleep. This is behind the “I need help”. #Joywarrior #vulnerability #wekeepgoing #theaftermath #reallife #theuntoldstory

The best part of my birthday was watching my Ginger Baby sing in his last chorus concert of middle school last night. And they sang one of my favorite songs, “A Thousand Years” by Christina Perri. It was magic in the mess. A big spectacular moment. The best part of my birthday- my babes and Bardie and Papa. #Joywarrior #andsoichoosejoy #thisonelife #magicinthemess #spectacularshow #mypeople #thisisus #wekeepgoing #iloveus #choosingjoy #findingjoyinthejourney

Leveling up does sound more badass. Last year at this time, I was finding my way living w the effects of a brain surgery gone terribly wrong & 2 new neuralgias of my cranial nerves. Life was so tricky & I was trying desperately to find the magic in so much mess. I was relieved that choosing joy was in my bones & it pissed me off terribly. I continued on finding the dance & tug-o-war w joy & pain and all the feels & fuck shows in between. And w every “sorry” I got from my neurologist, I grew more pissed & I had Bardie who insisted every stone be unturned. Fast forward to finding my way to CA & the mad skills of Dr. Linskey. To work w him seemed to be a dream unattainable. It also seemed a bit crazy to want a 4th brain surgery given the outcome of 3 previous ones. And yet. So I did it. Tomorrow marks 3 weeks post op of a 5 pack MVD brain surgery. And I am in the midst of the ohmyhellss & depression has kicked in & the appetite is gone & I. Am. Struggling. And today I turn 42. I level up. What have I done for my birthday? Yesterday, Bardie (Mommy) brought me this new laundry basket. It’s like the one I had in CA. The one I grew to love. Comfort. And then she took me to my neurologist to discus meds. I’m starting on a new antidepressant bc I need help. And a sleep aid that also helps my mood. I need all the help I can get right now. And we are asking for it. That’s leveling up worthy, right? If there is one thing I have learned over the past year besides the AND/BOTHS & that joy & pain exist at the same time & that even though letting go is sometimes harder than holding on- we still let go. That even when I feel like I just can’t do it anymore- I can. Ive found there is so much grace is asking for what we need. It doesn’t mean we are weaker. It means we are stronger. It means we are more of a Warrior than we ever imagined we could be. I’m struggling so very much right now. And I’m still looking for those tiny spectacular moments. I’m finding joy in the agony. Healing after brain surgery. Clinging for hope when I am just too tired to keep tying knots at the end of my ropes. AND asking for help. I’m leveling up. Twenty minutes at a time. #Joywarrior

5-22-17 I wrote-“Today is your last day of being 40. You should do something fun”. I spent my time until carpool doing random things & in pain bc I can't take any meds when I have to do carpool or drive at all. This is always very hard. It makes me realize how very hard my life has become since my failed brain surgery 5 months ago. It brings on the grief. Acceptance & I are still not a thing. In that small room of me, I see no acceptance yet. And yet in the midst of grief today, I felt joy w my daughter & her friends. They do exist together. I've found that all along the way over the past 5 months. Even on days I wanted to throw my "choose Joy" f*cking habit out the f*cking window, it's so ingrained in me I couldn't. On days I thought there is zero chance of me living the rest of my life feeling so miserable w this pain, something in my day gave me joy. Snuggling w my kids or joking around w my hubby filtered in through the pain & angst & grief. I am gifted w a wickedly insane sense of humor & God knows that laughter is the best medicine. I still cry at some point in everyday. Life w a chronic & invisible illness feels impossible. With the amount of pain I am in daily, I wonder how the people that love me could expect me to live this way. And then I have these moments of joy in the midst of the madness & I know I would never want to miss this. These moments. Tomorrow I level up in age. But I've been leveling up over the past 5 months. Each stage of your life requires a new version of your self. Recovery has been like this too. It's all so different & so very much the same. It seems to me that we don't mature w age but more so w the damage. The past 5 months have been proof to me that pain & grief & joy all exist together. To the days I felt I just could not possibly continue & yet still manage to find joy in my family or here or a tiny victory, I give thanks. More on leveling up again 5-23-18 tomorrow #Joywarrior

Oh my heavens!!!! The magnolia tree in our backyard has burst into blooms...and I can't explain how this makes my heart *so* happy. It smells like incense, earth and heady love all mixed into flowery perfection ♡
#fromourbackyard
#joywarrior #followyourjoy #soulmedicine #grateful #itsthelittlethings #elixiroflife #swoon

The transitioning home has been so difficult for my party of four. My daughter doesn’t like to talk about any of it. I was gone, we FaceTimed & now I’m home. My son wants details & wants to know the why’s of it all. The main one being, “Why aren’t you better?” And we keep going over that one. It’s that ridiculous word “time”. And I tell him over the next several months improvements will be made & I use the word, “patience”. I say all the things that were said to me. And for his sake, I want to believe them too. Him & I both see where I am now & it’s tricky. It’s not tricky. It’s hard. I’m not flailing about in pain. I’m not a crier. Unless I’m alone. I just feel like I haven’t slept in decades. I feel like one feels when depression kicks in & up. And for my kids, it’s remembering how to hug me, which side to be careful on- rules. Transitions are hard. For them. For me. For us. Last night, they both escaped to their rooms. And I didn’t want that. I wanted to think of a way to bring back the familiar. And I remembered a text early on from my neighbor that said though she tried, my son said that nobody made terryaki chicken like their mom. And so I made it. I baked my chicken & their favorite sides. And when I called them in, I told them that we are still us. We’re just a different version of us for now. Baby steps. Or giant hurdles. Leaping into a big dinner may have been a giant hurdle. And yet, it let them see that I am in here. I am in here. I’m buried under a lot of rubble. And I’m buried under a lot of pain. And the depression makes me want to push the world away. Or for time to stop or maybe just fast forward. It makes me feel or not feel a lot of things. My feelings out loud don’t seem to have a place. There’s room for air and there’s not. I’m breathing. And I’m holding my breath. There are moments of Joy and day long battles of pain in my mind and my body. For now, the only way of the Warrior I know. I love you. I love me. I love us. #Joywarrior #andsoichoosejoy #thisonelife #truth #warriorspirit #depressiion #raredisease #theaftermath #wekeepgoing #realityvsexpectation #vulnerability #daybyday #exhaustinghurdles #transitions #brainsugery

This is where I am now. I remember so vividly hitting this point w my last surgery in December 2016. I held my self together so neatly in a package. I knew things were not as they should be. How they were supposed to be. And i waited. And the two week mark hit. My follow up came & I fell apart. The depression hit. The PTSD of the surgery hit. And the permission of falling apart followed. I had no words. No one had words for me except things that made them feel better. And I had no words except vice versa. With this surgery I was away. And my life here went on & it went on so very well. And there is a gift in that. A bittersweet gift. And I hit the two week follow up point. An excruciating 2 week follow up. And I was told to be patient. That it takes time. And time becomes the worst 4 letter word I have ever heard. And there are no words to describe the pain I am in except that I would take all of the worst things that have ever happened to me in the span of my entire life over this. That I have no words to express my depression bc waiting for the “better” of this over months offers me no comfort or consolation. I feel stuck. I feel trapped in a face, a head, that tortures me around the clock. I find no comfort in this skin. This is my reality. Waiting for the better of my throat, my ear...and hopefully my voice is maddening. I want what others want for me. Others have no words for me. I have no words. This side of joy feels like desperation. I’ve tried so very hard to be and do what Warriors do. To left foot, right foot...breathe. To AND/BOTH. I’m so tired. I’m approaching just three weeks post op with months of getting better ahead of me. I don’t know what to do with my self. Everything in my head feels a bit of a mess. We all have things inside of us that we feel like they wouldn’t make sense if we said them out loud. Like we all have a f💙ck face face and mine is quite literally my face. I have no words. And I am on a different side of joy. I have no words except aa jumbled up mess. I know that I have healing to do. I know a lot of me won’t heal. And the “during” is drowning me. This is the real life of a Joy Warrior. Not so Warrior-ish. #Joywarrior

Who wants to play with me?!?! I learned some amazing stuff this weekend. Can’t wait to incorporate into spreading #morejoy ! #lifeisgood #lifeisgoodkidsfoundation #lifeisgoodplaymakers #joywarrior

6 of 6
Just drinking some #cheerwine down at the #laundromat
A couple of weeks ago, I had the amazing opportunity to pretend to be a #hometownmodel for @brooklynjamisonphoto
You should check her work out, she is an amazingly talented photographer! I had so much fun!
#itsbiggerthanmakingafacepretty #undiscovered_muas #828isgreat #joywarrior #hopedealer #beautyslinger #pretendmodel #makeupbyleahhensonmilan #creativeweirdo #beabasicunicorn #becausewhynot @drinkcheerwine

5 of 6
Just drinking some #cheerwine down at the #laundromat
A couple of weeks ago, I had the amazing opportunity to pretend to be a #hometownmodel for @brooklynjamisonphoto
You should check her work out, she is an amazingly talented photographer! I had so much fun!
#itsbiggerthanmakingafacepretty #undiscovered_muas #828isgreat #joywarrior #hopedealer #beautyslinger #pretendmodel #makeupbyleahhensonmilan #creativeweirdo #beabasicunicorn #becausewhynot @drinkcheerwine

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