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Living the Chronic Illness Life

Intentionally Living Spoon By Spoon

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    • Intro Week: Welcome to the Thick of It
    • Chapter 1: Cultivate What Matters
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    • Chapter 5: Plant Your Seeds
    • Chapter 6: Grow in the Wait
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    • Chapter 10: Preserve the Fruit
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“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
I am so thankful for @cambridgemask! Their masks are amazing and protect against bacteria and viruses unlike other masks that just filter allergens and pollution. Maura and I went out on a target date while I was infusing, and just enjoyed one another’s company. In a blog post coming out this week, I will be talking more about them but Cambridge Masks gave me extra masks to do a GIVEAWAY ☀️ To enter follow me and @cambridgemask and tag a friend who you think needs a mask this allergy season. Giveaway ends Friday! #cambridgemask #giveaway
| 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
Oh the joys and wires of a sleep study 🤷🏼‍♀️😂🤦🏼‍♀️ Hoping I fall asleep quickly 💤 #sleepstudy #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
I finally posted part 2 about how we ripped apart my dress! This is a time lapse of one of the many fittings. Making a dress around an HKAFO was not ideal but with the right people it all came to life with a lot of hard work and a little magic ✨ click the link in my bio to see all the step by step pictures that we used to document the whole process! Thanks again Laura for all you did to make this possible! #wedding #weddingdress #magic #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Today @caitiemayo joined my livestream and it was FANTASTIC 🙌🏻🙌🏻 thanks Caitie for being willing to come on and join the spoonie study! #spooniestudy #sisters 💕 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Today is #rarediseaseday and everyone is encouraged to #shareyourrare. I live daily with Ehlers Danlos Syndrome. It looks different on everyone and for me it includes other conditions as well such as: POTS, RSD/CRPS, and Hypoglycemia. Everyday looks a bit different but it is full of infusions, joint corrections, braces, and medications. I am so grateful for the community of chronic illnesses warriors that I have met through having this condition. How are you sharing your rare today? Thanks @watercolor_me_impressed for inspiring me to creatively share my story today! 📸: @mauramaginnis (who risked her life and mine for this photo 😂😂) #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
This man has been carrying me since day one 💕these past few days have been hard as I can’t keep anything down, but I am so thankful that I am able to trial this med at home rather than in the hospital (thank you Jesus for home IV fluids!) Thank you Jared for always carrying me through the storms my body creates, and for always facing each new challenge by my side. I love you 💛 #wedding #overthethreshold #marriagegoals 📸: @ashleygreenphotography #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
It felt great being able to use the certifications I have for someone other than me 🤣 seriously though I was so happy to help Stephen and help him stabilize his knees while heavily training. #dancemedicine #buthesatriathlete #rocktape 🙌🏻 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Oh ya know just practicing our hand lettering (thanks @chalkfulloflove) and watching tidying up with Marie Kondo ✨ This is what best friends are made for 💕 #handlettering #handletteringpractice #chalkfulloflove #practicemakesperfect ☺️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Today was the most imPORTant day of all... my first access! We full on celebrated! I have longed for the day when I could sit on my couch infusing rather than laying in a hospital bed. Today was amazing. God is so good. Literally #blessed #powerport #godisgood #confetti Thanks @mwallmann for shooting the video for me and thanks @jcnolin11 for surprising (and scaring 🤣) me with the confetti! 🎉 #celebrate #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
This angel kept me company as the snow fell today. Toby is my honorary therapy dog 🐾 dogs make recovery easier 💕 Thanks @mauramaginnis for giving me Toby for the afternoon #dogsofinstagram #honorarytherapydog 🌱 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Today I had a bit of an overwhelming meltdown. Living the Chronic Illness Life is hard, but I am fortunate for an amazing husband and compassionate family who work through these struggles with me. Please keep us in prayer as we prepare for my first access Thursday and for the pain to get under control. For all my bible study friends head to IGTV for chapter three as I am not well enough to go live 💕 #powerport #centralline #godisgood 💉 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Jared deserves ALL the snaps! So I can’t write right now but wanted to still be able to do my #writetheword so I am dictating and Jared is doing the writing for me 💛 I love his heart so much 😭😍😍😍😍 #besthusbandever #marriagegoals #hospitalhairdontcare 💕 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Nobody better to help with recovery than Foxy 🐾 Today was a better day and the pain is lessening each day. Thanks @nursecoachdeb for visiting and bringing my favorite dog #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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