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Living the Chronic Illness Life

Intentionally Living Spoon By Spoon

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This. This moment. ☀️ We had been waiting to experience seeing them TOGETHER for 12 years. Funny enough 12 years ago we were supposed to see them together, and then 6 years ago were supposed to see them... but then the tour was cancelled and the Jonas brothers were “over.” ☀️ This was us before they came on. The next photo caitie took for the three of us as we were counting down the seconds until they came on stage. We made some 🆒 shirts. If you swipe through the photos you will see us holding hands we had been waiting for this moment for so long it was unreal (scroll to the end to see the video of them coming onstage.) ☀️ We screamed. We cried. We danced. We sang. And we were the happiest people on earth. I even rocked so hard that the adjusting bead on my mask BROKE OFF so the last photo that you see before the video is me with my spare mask I keep in my med bag! ☀️ To see them play songs we waited to watch premiere on Disney channel in middle school right in front of our eyes TOGETHER was priceless. Caitie and Stephen, I am so glad that the four of us got to experience this and scream so hard that we lost our voices together. Thank you @jonasbrothers for allowing us to grow up with you and be on this rollercoaster. ☀️ Now... I am going to rest for like the next three days. Brace my neck and ice my shoulders. Am I going to need to recover hella bad- yes. Is my body ridiculously sore- yes. Does my head hurt- yes. Would I do it again- yes (in November we will!) Was it worth it- YES. ☀️ Sometimes we need to just live life. Today we lived... We rose our hands, we lost our voices, and simply enjoyed ourselves despite the challenges and symptoms and honestly because they are back together we are living our best life. ☀️ #happinessbegins #jonasbrothers #livingthechronicillnesslife

Just soaking up some sunshine with one of my best friends ☀️ Sometimes you just need to take all your braces and tape off and carefully (very carefully) embrace the summer and the body that you have. I very rarely take all my braces and tape off, but it was refreshing to take some pictures where for the most part you couldn’t see the EDS- you just see me and my lovely sister in love! ☀️ Side note for all my MCAS friends- laying in the grass even for just a few minutes might make you break out in hives like crazy 🙈 just as a heads up 🤷🏼‍♀️ #lessonlearned ☀️ #livingthechronicillnesslife

Grief. It comes in waves when you have a chronic illness... especially when certain things are progressing. I would like to say over the past 9 years that grief gets easier to handle but that’s just not true. For now this is my prayer as I grieve a life that could not be: Lord, I don’t understand Your plans and feel like You have taken away the dreams You planted in my heart. Help me grieve, while honoring You through it. Allow this to become an act of worship, and every moment I feel like I can’t continue on give me the strength to say, “I can do hard things for you Lord, even this.” 💛 #livingthechronicillnesslife

It has been such a good day! ✅ Podcast launched (@speakingtotheheart) ✅ got to shower 🙌🏻 (thanks babe) ✅ Pet tons of dogs (thanks @mauramaginnis) ✅ organized clothes (thanks again Jared) ✅ cuddled with Foxy ✅ successful pain free access (again you are the best @jcnolin11 ) ✅spaghetti pizza ✅homemade ice cream sandwiches ✅ hanging out with @caitiemayo & @stephenmayo_jr all night Thank you everyone for their birthday wishes I am so blessed to have each and every one of you in my life! #birthdaygirl #livingthechronicillnesslife

“That person is like a tree planted by streams of water, which yields its fruit in season and whose leaf does not wither— whatever they do prospers.” Psalm 1:3 NIV This view. This tree. This sunshine. I cannot even express to you how much I love this view. As I have grown older I have come to really appreciate trees. Even when I am stuck inside, the view makes me feel as if I’m not. If window gazing and dog watching were a sport I would win for sure 🤣☀️🌱🐾 Tonight after a literal day of rest and after a few nights of not sleeping, I was fortunate to be able to plant a couple new babies tonight 🌱 (check out my windowsill gang in my story) For Saturday and Sunday I am taking a social media free weekend so if you need me text me. See you Monday friends 😘 #livingthechronicillnesslife

The past few days have been really rough. This shoulder dislocation has really kept me down, caitie came over last night to visit and be with me while Jared was at work today. I love spending time in God’s word with her. I can’t write so she actually did my Write The Word journal from @cultivatewhatmatters with me- it was really special and then we spent some time in prayer praying over others. Caitie I am so blessed to be your sister 💛 see you soon bae! #sisters #siblinggoals #dailydevotional #timewithgod #cultivate #writetheword

Happy mother’s day to my mom and to my mother in love 💛 You both are amazing and I am so blessed to have you both in my life. I know I won’t be able to either of you today but I love you both dearly! #mothersday #happymothersday #motherdaughter #motherinlove

Here’s the thing about my mom and I, we are a team. My whole life she and I have approached life side by side. I am so blessed to have such a beautiful relationship with my mom and to not only have her as a mom but as a best friend. We host a podcast together, we are both active in women’s ministry, we both plant together, we advocate together, and we always encourage one another. Mom I hope you have the happiest of birthdays! I love you 💕 #happybirthday #motherdaughtergoals #bestfriends

“He renews my strength. He guides me along right paths, bringing honor to his name.” ‭‭Psalms‬ ‭23:3 🙌🏻 His hands. I couldn’t live life without his hands. Hands that relocate my joints. Hands that access and deaccess my port. Hands that sort through medication bottles. Hands that do daily joint corrections. Hands that hold me up when I simply can’t. Hands that set up infusions. Hands that hold me when the pain is too intense. Hands that carry me when I can’t walk. Hands that pray over mine. Hands that jump into action when I have an allergic reaction. Hands that patiently and excellently wheel me around. Hands that hold flowers of encouragement on bad days. Hands that squeeze mine when I’m anxious. Hands that have learned how to handle anything that comes our way.... His hands allow me to live the best life I possibly can. What’s even more amazing than that is that I know who guides Jared’s hands. God gives us both the strength to face each day and He promises to renew us each and every day. Thank you Lord for giving me a compassionate, hard working, and God loving man who delights in Your strength. Fill him up today and everyday and renew his strength, and let him feel how loved and appreciated he is. I also ask that you help every caretaker feel renewed and strengthened through Your amazing peace. Today Jared’s hands did so much for me when I was not able, I could not be more blessed to have a husband and caregiver that helps me face each day even when I don’t want to. Please take a moment today and thank your spouse or whoever your caregiver is. I have so much respect and love for all those who take care of us spoonies and our broken bodies. I love you endlessly Jared 🤟🏼

For months I have raved about how #powersheets have changed my life to my mom so for her birthday this year- I gifted her a set of her own! Mom I’m so glad that I got to celebrate early with you, and I cannot wait to see how powersheets will help you grow your goals! Let the journey begin! Thank you to all the ladies at @cultivatewhatmatters we are so grateful for you! #growinggoodthings #birthday #motherdaughtergoals

I am OBSESSED with these peonies Jared got me for our anniversary yesterday. Peonies are my favorite flower and they make the room so much brighter! Thank you to everyone who wished us well, God is so good. 🌷 What’s your favorite flower? #weddingflowers #peonies #oneyearanniversary #happiness

Wow. An entire year has flown by. I can’t believe last year at this time I was getting ready to marry my best friend! I was so fortunate that my team helped me be as healthy as I could for this special day and yes I know I pushed myself extremely far that day (I swear I didn’t recover until like last October 😂) but pushing through the pain was so so worth all the memories and long recovery. Thank you Jared for all you do for me and for going through life by my side, I am beyond blessed to be your wife. Happy Anniversary babe, here’s to many many more! Also BIG thank you to everyone in our bridal parties and our families for making this day so special ✨ #wedding #weddingvideo #oneyearanniversary #stolenbyanolin If you want to see the video without interruptions click the link in my bio!

There is like nothing I love more than doing my write the word journal every day. I am currently on my 3rd write the word journal that are made by @cultivatewhatmatters. This has been a game changer in my walk with Christ. My desk is my favorite place in the house between all my plants and the bay window- it’s the greatest spot in my opinion. I had a great vacation but I am happy to be home where I can settle back into our daily routine. I try to start every day off with quiet time with God. How do you start your mornings? For more details on the write the word journals feel free to click on my story highlight entitled write the word ✨ #writetheword #biblejournaling #dailydevotional #cultivatewhatmatters

“Enjoy what you have rather than desiring what you don’t have. Just dreaming about nice things is meaningless-like chasing the wind.” Ecclesiastes 6:9 Everyday we have important choices to make, will our attitude be good or bad? Will it be a day of joy or a day of resentment? Will I be faithful to God promises or doubt His timing? Will I make small progress or allow myself to be overwhelmed? Today I had that choice to make when my family and I went bowling today. I could have been disappointed that I could only watch... or I could enjoy myself even if I looked childish. I chose the latter. A few days ago in the car Jared and I were preparing for our podcast recording and somehow got off topic and started talking about the activities we miss doing together like rock climbing, bowling, tennis, and mini-golf. Well when we got to the bowling alley today he jokingly said, “hey you could totally play if you use the kids beginner slide.” I thought about it and kept thinking how stupid that would look, I really wanted to just bowl, but we knew the weight of the ball while swinging it would definitely cause a shoulder dislocation. Then I decided you know what, I don’t care how stupid people may think it will look- I am going to enjoy myself... and I did! So friends don’t be afraid to look stupid or feel foolish for enjoying life unconventionally. How are you going to embrace today? #enjoylife #befoolish #havefun #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

We are here in this cozy little cabin in Maine for the week, and this vacation is not packed with things to do besides relax. Mom and I spent the whole morning and afternoon working on women’s ministry, sharing fruitful conversation, and recording podcast episodes! I can’t wait for you all to hear what we have been working on! Having time away to refresh and replenish our souls is so important because we can’t serve others if our reserves are empty. I am excited to see all God is going to reveal to us all on this week away during Holy Week. And mom I cannot believe that we are finally recording for the Chronically Cultivating podcast... God is so good 🙌🏻 #retreat #inspired #replenish #refresh #wordofgodspeak 🌱 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

| For everything there is a season, a time for every activity under heaven... yet God has made everything beautiful for its own time. Ecclesiastes 3:1,11 | 🌱 I’ve got a dog at my feet and Jesus in my heart 🐾 We have spent today relaxing and joyfully meditating on God’s word. Spring embraces new life, new growth, and new opportunities. We are celebrating how far we have come, but also recognize how much further we have to go in all aspects of our lives- but especially in regards to dealing with this broken body. 💛 I took a break from Instagram to decide if I still wanted to share my journey because sharing all that encompasses living the chronic illness life means that I am opening myself up to judgement and criticism. We can’t grow unless we are uncomfortable, and loving God + doing what He has called us to do will make us uncomfortable at times. After much reflection I am happy to be back on Instagram- especially in this Spring season. ☀️ My spring refresh had me create a social media mission statement and I wanted to share it with you. Here are the reasons I have this account: to show God’s grace and faithfulness 🌱 encourage others who live the chronic illness life 🌱 evoke a feeling of metamorphosis with an understanding that change is hard, but becoming who you are is worth it and takes time 🌱 inspire others to live intentionally where every spoon you use has a purpose 🌱 to remind and show myself that I can move mountains from a hospital bed 🌱 and most importantly to OWN + SHARE MY TRUTH 🌱 #ownyourtruth #shareyourtruth #cultivatewhatmatters #chronicallycultivating ☀️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Laughter is such an important part of marriage. Last night Jared and I stayed up late watching hilarious dog videos and laughing so hard we could barely breathe. In that moment I just remember thinking, “this life is so good and I love living with my best friend.” Life doesn’t always go how we planned, but we choose laughter and joy and celebration despite our circumstances. Living the chronic illness life is hard, but there is so much joy along the way. This photo holds some of my greatest memories from owning OST, and I’m so grateful that I got to spend those years working with my best friend by my side the whole way. I love you Jared💛 #chooselaughter #bestfriendgoals ☀️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

The #100outof100 has gone viral and I couldn’t help but use this as time to love on my partner, caretaker, and best friend. This is not a professional photo but I might be one of my favorite pictures from the wedding as a whole. I also added some different pictures for our journey (including the ones from when I was in touch therapy for RSD/CRPS and my leg touching Jared’s was a HUGE deal!) We tackle everything together. Every challenge. Every bad day. Every victory. Every doctors appointment. Every everything. Yes we face unique challenges but that makes us a stronger couple. We have come across challenges that most people never have to walk through, and everything we get through- and with each trial- we believe that makes us MORE likely to stay together than not. I love you @jcnolin11 #reallove #marriagegoals #overthethreshold #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

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