Saturday’s at Target. We found new Resting Stations while shopping. I think it’s our new favorite thing to do at Target. Mine was quite comfy. Scarlett wanted her. I was exhausted from actually making a list AND remembering to take it with me AND checking things off as I went. All of those “adult-ish” things wears a girl out. AND, I stuck to the list. Who does that? Is that a thing? Ohmyhell, I felt awkward. Anyway, we were at Target. We found JOY and Starbucks (and a brownie 😍). Tiny spectaculars. ~~
#Joywarrior #andsoichoosejoy #thisonelife #itsthelittlethings #targetexclusive #restingstations #thatsmygirl #weekendlife #raredisease #invisibleillness #chronicillnesswarrior #trigeminalneuralgia #glossopharyngealneuralgia #genticulateneuralgia #anesthesiadolorosa #brainsurgeryrecovery #recoverywarrior #choosejoy #wekeepgoing #morecoffeeplease #warriorspirit #badass #wegotthis #ohmyhell #adultish

Perfect grace because God’s grace is glue. It is so difficult to write about things in the moment sometimes bc you can’t see the bigger picture at the time. Sometimes, I forget what got me to my now. Last night I couldn’t sleep again. It comes in brief moments & then I’m awake & so restless in pain. I read something in my little God book & then scanned social media & found this poem by @morganharpernichols. And then I looked back on this last season & wrote down the beginnings of God Winks that got me to now. It was just a quick list of remembering. In CA, Bardie & I also got to meet Sisters of this tribe, @billiestory & @naturalnavigator & @tinawaxes. And I fell hard for each of them. Bardie loved & cared for me so well in the before & even this long after. Dr. L & his team were the A Team & so compassionate & patient w me. My kids have become even more resilient. I didn’t come back as expected & that’s hard for everyone. The power of prayer has been seen & felt. My GoFundMe has helped make all of this possible & it will stay open. My husband’s fellow supervisors held a fundraiser night to help us with our expenses too and pitched in again w our recent trip to CA. Over & over again God Winks and affords me His grace. I can only look forward 20 minutes at a time, do the next right thing. Somewhere in the midst of wanting to just quit, my eyes are opened wide to another tiny spectacular. Daily I’m loved & inspired by all of you. Daily I’m loved so wholeheartedly by my family. And my healing is so very slow. In all honesty, I feel worse than before. AND YET, I am learning: to be more patient w my SELF, to grieve, to hope, to let go, to keep going, to cry, to persevere, to trust, to accept, to breathe, to be vulnerable, to know that God’s grace is the glue, to look for tiny spectaculars, to spend all the time I want in the valley, that it’s ok to choose joy horizontally and sometimes choosing joy means not choosing joy at all. All through this past season God’s grace has continued to let me learn and grow. He’s reminded me through so many that I am needed & held & loved. Things are so very far from perfect. And yet. But God. Grace upon grace. #Joywarrior

Remembering my grandmother. 7/27/28-8/9/18 Regrann from @thejoywarrior - Again and again, we are made. We are made by the building and the breaking. Day by day. I love you. I love me. I love us. ~~
#Joywarrior #andsoichoosejoy #thisonelife #truthteller #wearemade #wearebroken #peaces #andsoitgoes #godblessus #grieve #andletitgo #daybyday #thisismystory #badassery #warriorspirit

So, I’m writing my own rap song while hubby & I watch Netflix and give our money to our son while he goes to a high school football game. ~~
#Joywarrior #andsoichoosejoy #thisonelife #reallife #raisingkids #fridaynights #netflixandchill #realitycheck #thisishowwedoit #datenight #thisismystory #andsoitgoes

Again and again, we are made. We are made by the building and the breaking. Day by day. I love you. I love me. I love us. ~~
#Joywarrior #andsoichoosejoy #thisonelife #truthteller #wearemade #wearebroken #peaces #andsoitgoes #godblessus #grieve #andletitgo #daybyday #thisismystory #badassery #warriorspirit

Today I came across this flower on Nantucket. I love it’s color and texture. I’m calling it Prickly Purple. #joywarrior #morejoy #nantucket

Listen: JOY is your birthright. .
We are born in a state of joy, and over time we forget. Life lessons lead us to believe that this is supposed to be hard and difficult and complicated. And while Life deals the cards and sometimes we end up with a lousy hand or two, it is *we* who get to decide how we’re going to play the cards we’re dealt. .
When you can reconnect with your joy, change begins. You begin to feel the flow of aligned action rather than the struggle of fighting against the tide. You can start to hear your own inner voice, your intuition, and quiet the din of expectations and external pressure.
When you stand in your joy, you can change your world. 💗
#lifecoach #lifecoaching #perspective #mindset #clarity #clarityiskey #joy #joyfullife #youcandoit #believe #trust #ibelieveinyou #choosejoy #joywarrior #flow #soulsisters #soulpreneur #findyourbliss #womenempoweringwomen #catalyst #jrni
@wildsoulspeak 💗

Being a brave little human is exhausting. It’s cool to be brave and shit AND it’s scary. There is a lot coming down the way that feels big and tidal wave-y. Life feels tidal wave-y. I am making arrangements and appointments for new phases of my treatments for my face & my feeding tube and I do feel small because it all feels big. It feels never ending. I don’t feel like the brave little human I was created to be. I feel like anything but. And yet. Deciding treatment plans from CA and then following them through here, the brave little human in me has to show up. And the tidal wave comes and I drown. And then I back float. And sink a little. I’m a small human doing big things. Big brave things. Day by day. #Joywarrior #andsoichoosejoy #thisonelife #truthteller #braveenough #backfloat #warriorspirit #reallife #thisismystory #showingup #tidalwave #hopingitforward #bebravebeyou #wekeepgoing #dadybyday #wekeepgoing #justkeepswimming #wecandohardthings #justbeyou #breathe #leftfootrightfoot #thisisit #leapsoffaith #yougotthis #andsoitgoes #bravelittlehuman

First days of school yesterday for our Ginger Baby and our Scarlett. Carter has gone from kindergarten to being a freshman. Mr. Joywarrior and I cannot believe we have a high schooler. What the what?! And Scarlett is a 5th grader!! They’ve grown so much and I haven’t aged at all. 😉 #Joywarrior #andsoichoosejoy #thisonelife #firstdayschool #kiddos #favorites #growingupfast #gingerbaby #thatsmygirl #thisisus #iloveusomuch

He drives me bat shit crazy. Um...I might do the same to him but I doubt it because I’m glorious and passionately spirited (not all kinds of crazy). He’s been around for every up and every down. And as this down keeps going down with my f💙ck face & head, our “for better or worse” is continuously tested. This picture was the night of the day of my appt. with Dr. L. We were both numb and distraught and let down after my appt. We were in our separate worlds dealing with our real life. I had no words. He had no words. My disease has changed our lives immeasurably. I feel the day to day pain and trauma of it all. He watches his wife suffer with helpless regard. I tell him all of the time that I am sorry this is our future. That I am sorry he gets all this mess of me that will only get worse. With an added neuralgia that went undiagnosed for over a year, it’s another sucker punch. My cranial nerves are on a path we do not understand. My face is changing quickly. My invisible is becoming not so invisible. And he says that he is sorry I am stuck with him. He’s not ill but he has his quirks. We are both such benders. Never breakers. I don’t know how we do it. We just somehow keep showing up for that “better or worse” thing. Our worse is forever in our face (my f💙cked face & head is ours). And our better exists at the same time. Better AND worse. It’s never been an “or” with us. I love us because we keep going. #Joywarrior #andsoichoosejoy #thisonelife #betterandworse #wekeepgoing #batshitpassionate #myhubby #thisisourstory #thisismystory #raredisease #invisibleillness #badassery #refusetosink #showingup #togetherwecan #thisisourlife #iloveus #chronicpainwarrior #gratitude

When I go back to the “befores” of my rare diseases, my life was already so complicated. I was actually making my way into a recovered life. I was “recovering” my life. I was the strongest I had been, the most grounded. Almost 2 years prior I had hit the rockiest of bottoms with my anorexia & drinking & depression & anxiety & ptsd. I just wanted it all to end. I tried to do just that. End it. That was Dec. 2012. But I woke up. I really WOKE UP. First, I was so pissed. It was a real “WTF?” moment. I spent that next day thinking that if I could not even kill my self right then “What now?”. I was deep deep in a bottom I had never know. A shame pocket I felt there was no way out of & I was in it alone. I went through my house & threw away so many hidden empty bottle of alcohol & poured out the ones still full. I made my self something to eat and cried the entire time I ate it. And then I did other things it is not appropriate for me to write about. I found a therapist. And although it took me a year into recovering my life to open up about that bottom & what got me there, I went to therapy religiously. I talked about my life. My 23 year affair w anorexia. How alcohol entered the picture so heavily the last year or so. And finally on that year anniversary, I opened up about recovering my life. I opened up about all the things that led me to that night that made me want out so desperately. We all have our stories that led us to our addictions. Mine is just so twisted. A lifetime of just wanting to be loved. Wanting to be enough. Wanting to be wanted. wanting to claim my body as my own. Wanting to be allowed to take up space. Wanting to disturb the universe w my voice in telling my truth, sharing my stories. And here I am. It’s so hard to look back. Those parts of me never go away. They helped make me into the woman in the story I am now. All of us need a page in my story. Day by day. Page by page. And none of this was easy. #Joywarrior #andsoichoosejoy #thisonelife #truthteller #thisismystory #pagebypage #recoveringmylife #addictionrecovery #anorexiarecovering #soberlife #mentalhealth #sacredself #warriorspirit #badassery #beforeandafter #wekeepgoing

Harvested cilantro seeds (coriander) to plant next year and to use for seasoning. I love their color, shape and texture. #joywarrior #morejoy #corianderseeds #homegardening #foodfrommygarden

The only reason I made it out of Target spending less than $50 (only $20) is because I was too tired and got cozy in this new Resting Station. Ohmyhell, my usual Resting Station (aka fitting room or furniture displays) were dismantled. ~~
They are remodeling and doing strange things to our Target. Change is so hard for me and especially hard for Target. My f💙ck face is literally my face. For Target, their f💙ck face is everywhere. And yet, she is still so so beautiful. ~~
Clapping for everyone today. Because it’s Monday. Because we got out of bed (I have not showered, gotten out of my pajamas, brushed my teeth... I have done zero things but wake up. THAT WAS GOOD-ish ENOUGH). I love you. I love me. I love us. And oh, thank God for Target even when she is messy. ~~
#Joywarrior #andsoichoosejoy #thisonelife #truth #laughterisgoodforthesoul #targetstyle #ilovetarget #restingstation #wecandohardthings #changeishard #exhaustedpigeon #goodish #forthelove #fixitjesus #thisismystory #iloveus

I love @brenebrown words. Daring greatly seems the only way through so much of this part of my story since my @brainsurgery. I fought my way to CA to have the top neurosurgeon & his team who specialize in my #rarediseases treat me. God winks fell all around me. And at the same time, heartache. It has been a long 3 months waiting to see if the surgeries for my #glossopharyngeal & #genticulateneuralgia took. Day by day I keep sitting in pain that feels worse. Less & less comfort zones (air, sun, breeze, wind, heat, cold, etc.). I was so scared & anxious about this appt. I wasn’t scared of this wonderful team of people (My Dr. L -neurosurgeon in the 2nd pic). I was scared bc I knew I had made 0 to little healing since surgery. I was afraid to say the words, “I still feel the same. Even worse. And I have new debilitating pain. And w a shaking voice, I said just that. I heard Bardie’s voice in my head, “We got this. You are an effing WARRIOR; you have a legion around you supporting you; that she loves me to the moon.” And I spoke. My improvement is a great deal less than ever expected. Some parts of me are much worse- the #anesthesiadolorosa, the d5 pain, my #trigeminalneuralgia & now ever increasing #occipitalneuralgia. Time & hope were the words of the time spent w my doctor but in great seriousness we discussed that if the surgeries did not work, cutting 2 of my cranial nerves were my only options. It’s like that now. And that’s scary. And w the AD, I was referred to a doctor in Chicago for other surgical options- a motor core stimulation implant in my brain. Ohmyhell. I have been vulnerable. I continue to be so. Afterwards, I felt like a wet noodle. I felt overwhelmed. Not knowing the answers to my wandering of my recovery was so hard & yet knowing may have been harder. Harder for different reasons. I have some sorting out in my head & heart to do. And more patience to muster. I have 9 more months of careful monitoring unless a plateau takes place sooner. In the last picture, it’s me & God sorting it out. I was doing most of the talking-praying & cursing, “If this is my story, hold me closer. Let me be Light”. #Joywarrior

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