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The Girl On Fire

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Foxy Film

Just a gallery of photos of my dog, Foxy.

She loves stealing Mac & Cheese, lying around in strange positions waiting for the mail to come, and ignoring me. Enjoy!

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We bought a new car!! When Jared’s Prius died we decided we needed something bigger considering I will be getting a custom wheelchair and hopefully a service dog (well within the next year or so) and the Chevy equinox was a perfect fit. Isn’t is so pretty 😍 Just to update I went in tonight and got checked out and my oxygen levels were lower than we would like and my lungs are still aching so we are headed back in on Friday to follow up and check oxygen levels again. So it goes 🤷🏼‍♀️ #newcar #blessingsonblessings #chevy #equinox 🚘 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

This was the moment we knew this dress was the one! One of my favorite memories throughout planning the wedding was right here with @nursecoachdeb Swipe right to see the dress in one piece and how the seamstress tried to help me imagine what it would be like when it was split. To see the Vera wang dress I almost got swipe all the way to the end... want to know how we ripped it apart? Click the link in my bio for more details on the dress! #wedding #davidsbridal #irangthebell #weddingdress

168 days ago I became a Nolin... now when I first put this jacket on I was a junior in high school proudly wearing my boyfriends number. Today I put it on and was reminded of God’s faithfulness. He told me that Jared was going to be my husband and despite all the trials we came out on top together. I love you Jared and I love doing life with you 😘 #couplegoals #blessingsonblessings #godisfaithful #stolenbyanolin 1️⃣1️⃣ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Saturday’s are for pill sorting in pajamas 💊🌦👌🏼 The craziest part is that I’m not even done 🤦🏼‍♀️ my night meds are upstairs and need to be done but that’s part of #livingthechronicillnesslife What are you doing this Saturday? We are hoping to go to our church’s worship night tonight assuming I have enough energy after showering ✨ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

| Happiness isn’t about getting what you want all the time. It’s about loving what you have and being grateful for it. | God has been really working in my heart this past week. @lauren_daigle lyrics “you’ll have every failure God you’ll have every victory” from You Say has been on repeat in my head for days- and I’m so thankful for that. We had three bigs things we have been praying about and two of those things God already provided and He went ahead of us and moved our mountains. He is so great and we are so blessed. Thank you everyone for joining us on our journey of living the chronic illness life. ✨ Even when I don’t like my body- God is still good. I chose the quote above because I need this reminder when my body isn’t doing what I want it too. Even with a broken body, God will be faithful when you do as He asks. Stay faithful my friends 💕 #faithful #hope #broken #grace #blessingsonblessings 📸: @mauramaginnis

Prayer. It is so crucial to our relationship with God and with each other. Tonight we celebrated the victory God gave us today. We prayed earlier that the team we encountered today would be understanding and willing to help us get this flare under control- then my favorite ED nurse and doctor happened to be on today and on my care team. My body is hurting but we are fighting and taking things day by day. Now I am joined by my father to be here until the end of the infusion. Thanks dad! Teamwork makes the dream work ✨ What small or big victory did God give you today? #hospitallife #bostonchildrens #chronicillness #marriagegoals 🙏🏻 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Today was Apple Cookie Day! This is a tradition Jared and I started when we started dating 5 years ago. We missed it last year because I was too sick, and despite how awful I felt this morning- I was determined to do this. My amazing mom came to help us and she just offered to come (knowing I needed help) but didn’t make me ask, which made me feel a little more independent. Asking for help is a huge struggle of mine, and for most with chronic illnesses. So thanks mom for taking the initiative there 😉😘 My grandmother, Jared, my mom, and I all made these cookies and even though it looks like I’m running around- this is of a 4 hour time lapse. I can’t walk but can shuffle around. I worked with the body I have and am grateful that I was able to carry out this tradition this year! To all our friends who have asked about them... come and get ‘em! #baking #fall #tradition #autumnaltradition #applecookies 🍎 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

It was a very rainy day here in MA but it stopped to a faint drizzle every now and again. Living life with a progressive chronic illness is like the rain we had today- overwhelming with briefs moments of stillness. EDS holds some very heavy realities, and today that was weighing on my mind and heart. I have just felt worthless in every way today. I want to be able to do more and have a body that functions like everyone else’s but that was not the hand I was dealt. Despite what we are dealing with I just have the most amazing family and husband who is so supportive and ready to fight these illnesses alongside me. Right now as I told my team earlier today, I am just taking things one step at a time. Day by day and hour by hour. I am going to do the best with the body I have been given even with all the problems it has. So for anyone else who felt worthless today know that your body does NOT define your worth. Our worth is found in Jesus Christ and He will be quick to remind you of your value to His kingdom. These illnesses may take me down some days, but as long as I get back up again- they can’t win. #youareworthy #youareloved #chronicillness #reality 💕 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

So as much as I love my family’s dog Foxy (who we for now steal every month for one week) I am happy to report that we have been given an official application for a service dog! We submitted earlier this weekend (and had no expectation of hearing back from CCI anytime soon) but got the news that we are moving to the second phase! We will be filling out our official applications this week and sending them back! God is so good and @jcnolin11 and are so excited to start this journey. As much as I love and adore foxy, this is definitely the right step for Jared and I. Just knowing within 1-2 years I will (hopefully) have a service dog and be able to be more independent is so exciting 🙌🏻 🐾 also swipe right to see one of the outtakes when taking this picture of foxy and I 😂 #caninecompanionsforindependence #servicedog #application #soexcited 📸: @nursecoachdeb #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Fall Sundays in September are made for father daughter dates 🍂 Today we went to Hollis Hills and got all the fall things... apple pie ice cream, fresh hot apple cider, and of course freshly baked (right out of the oven) cider donuts!!! 🍎🍁☀️ Thanks dad for such a great date, I loved being with you and celebrating your birthday with you! 😘 #fatherdaughtergoals #fall #newengland #appleeverything 🎃 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

So I meant to post this yesterday when we did our facials for #facialfriday but a late night pain flare got the best of me so we are gonna go with #selfcaresaturday 😂 the videos we made I will be uploading today but know I meant to post these last night after we did them🤦🏼‍♀️ oh well better late than never... that’s what living the chronic illness life is all about! #itried #latepost #itsokay #embraceyourself 📸: @mauramaginnis 🌟 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

HAPPY BIRTHDAY DAD 🎉 you are my real life super hero who always does everything and anything for everyone in our family and you are SO appreciated. I love you so much and hope you have a great day! #happybirthday #bestdad #superhero 📸: my official Instagram photographer @nursecoachdeb ☀️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

This smile was not how this morning started. We blew 6 IVs (swipe right to see one of my arms) before we got one. Lots of pain but thank God for J-tips. I took a play out of @watercolor_me_impressed playbook and brought my body pillow with me (I normally just bring my regular pillow with me) and it is by far one of the best decisions I have ever made. Getting three liters of LRD5 and then will hopefully head home. Can’t wait until I have a PICC or a port so we can do this at home... December can’t come fast enough 🤦🏼‍♀️ Hope you all are having a good Wednesday ☀️ 📸: @jcnolin11 #hospitalife #iv #bostonchildrenshospital #choosejoy 💛 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

If you don’t have a best friend that comes over in the same leggings and color shirt as you without coordinating, are you even best friends? Had a good noontime catch up before I had to leave for some important appointments. Friendship can be a hard thing to tackle when a chronic illness if involved, but @mauramaginnis makes it so easy. How has your chronic illness or a friends chronic illness affected your friendship? #bestfriends #twins #twinkies #bff ✨ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

My real life fairy godmother and amazing grandmother turned 75 today! I am so grateful for our relationship and love you so much 😘 cheers to you nanny! #happybirthday #fairygodmother #grandma 📸: @ashleygreenphotography #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Today I rested all day long so that we could attend the fireworks at the #hopkintonfair nanny joined us and we met up with @mauramaginnis and her family! I’m so glad I used all my spoons to come tonight. Tired and fighting but grateful 💛 #fireworks #hopkintonma #hopkintonday #attitudeofgratitude 🎇 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Happy sensational 16 Stephen! Cheers to you! I am so proud of you and all you have accomplished between a first place win last week (and hopefully a win today!) you are a rockstar 🌟 thanks for being my face mask bestie and I look forward to getting together with you soon 😘 love you Shoat 😉 @stephenmayo_jr #happybirthday #sensational16 #triathlete #brother 🎂 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

I love cuddling with this one every chance I get 🐾 fortunately she was in a cuddly mood and enjoyed the attention. I haven’t had the greatest day health wise... but I got to go to target with my wonderful husband (who spoiled me a little bit with a new pajama/ lounge wear set) and with some wonderful fall things🎃 then my fav came over to eat and watch tag with Jared, Foxy, and I 😍 I can’t express how awesome it is to be neighbors 🙌🏻🙌🏻 now I am going to rest and plan to rest most of tomorrow before our towns celebration fair tomorrow (crossing my fingers that I will be well enough to go!) anyways I am just super thankful for today. What are you thankful for today? #targetaddict #attitudeofgratitude #dogsnuggles #shibainu 🐾

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