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Living the Chronic Illness Life

The Girl On Fire

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      • RSD/CRPS 4 a Cure
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    • Intro Week: Welcome to the Thick of It
    • Chapter 1: Cultivate What Matters
    • Chapter 2: Embrace Your Season
    • Chapter 3: Dream Like a Gardener
    • Chapter 4: Nourish Your Soil
    • Chapter 5: Plant Your Seeds
    • Chapter 6: Grow in the Wait
    • Chapter 7: Tend Your Garden
    • Chapter 8: Harvest Contentment
    • Chapter 9: Flourish With Others
    • Chapter 10: Preserve the Fruit
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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
Thank you everyone for your continued prayers for recovery. It’s probably going to be a long process, but it’s something we anticipated. Thankfully before surgery we bought a surplus of small ice packs that we can constantly swap out to keep swelling down over the port site. We know day by day, God will make things smoother 🙌🏻 -Post written by @jcnolin11 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Port surgery was a success! Extremely thankful to the medical team we had at #brighamwomenshospital today who made this procedure so successful, and more importantly all the praise to God for following through on his promises. Finally having access to home care is the biggest answer to prayer we could imagine. Very thankful for everyone who was praying for us Post written by @jcnolin11 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Had such a great weekend with @bydesignministries! My mom and I are both in different women’s ministries so sharing this weekend with her to learn, grow and be refreshed was such a blessing! My favorite takeaway from the weekend is, “just because you can do all things through Christ doesn’t mean that you have to do all the things.”
Today we took an imPORTant step in the right direction and got my port surgery booked- today was one of the final ED infusions I will have because this girl is getting home care!!!!!!!!!! And to make it even better I am going to share this experience with my bestie @hyperpotsmama who is getting her port on the same day as me! God is so good. #port #bestfriendgoals #spoonielife 💦 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
After the spoonie study tonight, Maura surprised me with this baby! Every Monday night Maura and I get together to just catch up, and she had no idea how much I was missing Foxy so Toby was the perfect surprise. I love a dog that just cuddles endlessly and I love my best friend even more... and our tea spilling sessions ☕️🤷🏼‍♀️💅🏼 Love you Twinkie!! Also if you missed the live stream a pre-recorder version will be up on IGTV on Wednesday as always 😘 #cultivatewhatmatters #dogcuddles #bestfriendgoals pc: @mauramaginnis #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Got to take my collar off for a bit today so we took advantage of it and grabbed our mermaid tails and created a coinciding makeup look 🧜🏻‍♀️ these blanket tails are the best 🙌🏻🙌🏻🙌🏻 Remember to enjoy every bit of normal life that you can muster 🌱 Thanks for the fun Joanne! 😘 #mermaid #mermaidmakeup #sisters ☀️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Powersheets prep day is more fun with friends! February we are ready for you! 👊🏼 #powersheets #powersheetsprep #cultivatewhatmatters #littlebylittle ☀️ #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 my whole heart for my whole life. We FINALLY got an IV in and are starting everything now. Waiting to hear from ortho on my neck so as of now it will stay collared. I am so grateful for good doctors and nurses... and IV’s and oxygen! I have had some fainting tonight but we are sticking it out. We couldn’t get my blood sugar up at home but hopefully the LRD5 will bring it up quickly- being an average of 65 sucks (but it’s better than below 50 so I’ll take it.) Thank you babe for always being my favorite hand to hold and for walking through life by my side. I love you! #marriage #hospitallife #littlebylittle 💕 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Tonight was the first night of conversation for the Spoonie Study! We had our first livestream (which you can replay for the next 24 hours if you missed it!) this was a huge victory tonight after months of preparation. God is so good! Update: I don’t have to be in my collar during the day all the time unless there is active joint pain/instability but I will be wearing the collar at night and in the car. Taking it little by little, spoon by spoon 🥄 PS please excuse all of the Christmas decorations they are being put away this weekend 🤷🏼‍♀️ #spooniestudy #onlinebiblestudy #cultivatewhatmatters #littlebylittle 🙌🏻 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Do you sigh when people talk about goal planning because living the chronic illness life is unpredictable? Well that used to be me. I didn’t know how to goal set with a chronic illness for a long time, but after lots of trial and error I have finally figured it out! I have a step by step inside look to my #powersheets prep and goal planning! Click the link in my bio to check it out 🌱 #cultivatewhatmatters #littlebylittle #goalsetting ❄️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Little by little by little by little 🌱 That is how I have approached today and this ED trip. Shout out to IV team and the wonders they work through ultrasound, we had 3 blown IVs before they got here and saved the day! Got control of this POTS flare before the snowstorm ❄️ #littlebylittle #cultivate ☀️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Tonight I filmed the first of the IGTV pre-recorded videos for the #spooniestudy, to say I am exhausted is an understatement but I am SO EXCITED to see how God is going to work in the hearts of everyone in this study! We are going through the book Cultivate by @laracasey from @cultivatewhatmatters 🌱 If you want to join the spoonie study it is a Christian Book/Bible Study for women ages 16+ with chronic illnesses. Message me or comment below to join if you haven’t already! We have our first livestream on Monday the 21st at 7 pm EST here 🙌🏻 #cultivate #cultivatewhatmatters #biblestudy #onlinebiblestudy ☀️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Back for another infusion after our vacation. It’s our prayer that those who don’t understand how frustrating this battle is, never have to deal with anything like this themselves. We’re however very thankful for the compassion and understanding that we’ve established in getting the proper care here at BCH. Post written by @jcnolin11 #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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