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Living the Chronic Illness Life

The Girl On Fire

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This girl right here is my best friend. We have been doing life together for over 13 years. Our lives have not been easy, but not even chronic illness could stop our friendship. I can’t think of a world where we are not sisters. As we worked on our #powersheets today, I was evaluating every area of my life. When it came time to evaluate how friendships have been cultivated, I couldn’t help but smile. This year we have had awesome opportunities to connect as we are now neighbors. I’m so lucky to roll through life with this incredible Twinkie by my side. 2019 belongs to us, we are making what matters happen 🥂 #bestfriends #sograteful #cultivatewhatmatters #powersheetsprepweek #melf 💕 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Spending time with this guy today ✌🏼 💛🎄 Just relaxing doing a spoonie friendly activity and watching some that 70s show. Laughing so hard my sides hurt 🤣 just making memories one pun at a time 💕 #brotherandsister #that70sshow #laughteristhebestmedicine 🤣 #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 a long day but we had an amazing team- every nurse, doctor, CNA, and PA were compassionate and thoughtful. I’m so tired from this long day but I am still so grateful I got to go out last night. Despite all of this, as my headband says, Her collagen may be weak but her God is strong. #hospital #hospitallife #infusion #chronicillness 💛 #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 will be paying for it heavily tomorrow but today was an amazing day! Maura, Jared, and I went to the night of lights at Tower Hill. We had such a blast. Doing one spoonie friendly holiday activity a week has been my goal for the season. It allows me to embrace the holidays without overdoing it. I have a wicked migraine so most likely I will need to head to the ED but hopefully it will be gone by the morning 💛 Thanks for such an amazing evening @mauramaginnis and @jcnolin11- I love you both!!! #christmas #christmaslights #bestfriends #holiday 🎄 #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 is where I was all day... addressing Christmas cards and wedding thank you notes! I made my body/couch into a makeshift desk as I am still in a straight leg brace for my knee. When I was younger I don’t remember dreaming about my wedding, but I remember dreaming about sending Christmas cards to my family and friends. Thank you @jcnolin11 for sealing all the cards for me! And, I wouldn’t have been able to do all this today without an amazing reiki session with @mwallmann- thank you for bringing my pain down and giving me some time of peace and quiet. I so appreciate you! What holiday activity/chore have you done this week? #christmas #christmascard #wedding #thankyounotes #reiki 🎄 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Having someone to do your powersheets with makes it so much more fruitful and fun! Maura and I are working hard to give our full attention to every page which means we will be going through the prep work a couple pages at a time. I love how we both wrote notes of encouragement to each other on the inside cover to our #powersheets! I love doing life with you by my side @mauramaginnis and hopefully when we work on these next week @lauren_elisee22 can join us! Thanks @cultivatewhatmatters for doing all you do to help us live intentional lives 💛 Also I have a prayer request I have a really important appointment tomorrow and there is a lot weighing on the conversation and plan that will be hopefully executing this dec/Jan. If you could lift me up in your prayers at 4 pm tomorrow and pray that God will show His faithfulness and give us a very overdue victory. Good night friends! #cultivatewhatmatters #powersheetsprepweek #bloom #bestfriends 💕 #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 a day spent in bed resting because I had a medial patella subluxation. Right now I am trying to decrease the swelling and the amount of fluid so it is in a straight leg for at least the next 24 hours. Then we will see where it takes us. 🤷🏼‍♀️ #recovery #subluxation #tired #bedrest 🤦🏼‍♀️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Enjoying the nutcracker directed by the amazing @kbchief I’m tired from being in the ED all night but thankfully my blood sugar has been stable today which has helped. Eating hasn’t been the easiest but that’s okay, one thing at a time 🥄 #nutcracker #ballet #imissitsomuch 🎄 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Tonight wasn’t the smoothest of trips. The ED was very busy and it took us a while to get in and get a room and then the wait on IV team was so long that we rushed a very painful IV. But we are about to head home. - @jcnolin11 Long night, lots of tears, tons of frustration but we will make it through, hour by hour and spoon by spoon 🥄 #livingthechronicillnesslife #hospitallife #spoonie #tired

This was my position for about 1.5 hours tonight. Just trying to breathe, get as much blood to my head as possible, and not pass out. This is the reality of life with POTS. I was on the floor because we were doing some joint corrections and when I went to get up, I realized I couldn’t without seeing stars. It wasn’t because I overdid it today, I actually relaxed most of the day and even caught up with a close friend. A pots flare is not always because of something “you did wrong” it can just happen. 🤷🏼‍♀️ I am happy to report that I am back up on the couch now. Any other spoonies or potsies who deal with flares like this? What’s your best #pots tip? #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

Today we had a family day and finally ordered our Christmas cards! I even have a couple small gifts to send to some of my followers as a surprise 😍 #christmascard #christmaspajamas #christmastimeishere #christmas 🎄 #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 thankful for the infusion that I just got 🙌🏻 #grateful 🎉 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

After having a miserable day full of lows I had a great night with foxy, @mauramaginnis, and Toby. I love that we are best friends and that our dogs are best friends (well... that’s stretching it... they can coexist well together 😂) dealing with all the problems that stem from the EDS can be challenging but we are taking things hour by hour and spoon by spoon. Hopefully I can get an infusion soon! #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Not a good day, but at least I have a good dog 🐾 she keeps staring at the lights and I think she enjoys them as much as I do 🎄 #christmastime #christmastree #shibainu #merryandbright ❄️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

A little time lapse from our Christmas card photoshoot with the lovely @mauramaginnis! Head to my story (or best of 2018 highlights) to see a sneak peak- I don’t know how we are going to choose a photo because we did so many cute photos! Foxy was uncharacteristically good and was well behaved the entire time. 💛 Now I am just relaxing by the Christmas tree 🎄 Who else has taken their Christmas card photos? #christmas #christmascard #shibainu #merryandbright 📸 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

Even though my body has not been doing good, I didn’t let that take away from the excitement of putting up our first Christmas tree 😍 we hung our wedding ornament together to symbolize our first Christmas married 💛 Ronald and Joanne were so much help! We are having such a good time with them 💕 The Christmas season has officially begun! #christmas #christmastimeishere #christmastree #family 🎄 #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 what my day looked like today. Lots of pain with a shoulder sublux. Today I also had another long memory loss episode. On days like today it can be hard to be grateful. In the spirit of thanksgiving here are all the things I am thankful for explained in the following photos : Photo #2: my husband. He is so amazing and I literally could not live the Chronic Illness life without him. Jared you are my rockstar. 🍁 Photo #3: all of our siblings and friends. Caitie & Stephen, thanks for all you do to care for me and for all the amazing inside jokes 💛 Bruce, Ronald, and Joanne: I am so grateful to have gained you all as official siblings this year! To all the friends in this photo and out of this photo- we love you all and we thank you for being apart of our lives 🍁 Photo #4 my dad. Dad thank you for always being a listening ear and a faithful hospital buddy. Thanks for watching crime shows with me and always making sure I know my worth. 🍁 Photo #5 my mom. Thank you mom for always being a shoulder to cry on and for being one of my biggest advocates. 🍁 Photo #6 my medical team. As hard as things are right now I am grateful for modern medicine and also grateful for all of the spoonies I have met through my journey that I cheer on daily! 🍁 Photo #7: my best friends. Maura and Mike thank you for always being there for me and for all the amazing memories we have made together 🍁 Photo #8 my new family and the adventures they allowed Jared and I to take! 🍁 What are you thankful for today? #happythanksgivng #gratitude 🍁 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife

This morning Foxy wanted to cuddle- I know I was shocked! She jumped up on the couch and laid on my chest while Stephen and I watched that 70s show before we made brunch. Getting some cuddle time with her made my day. Check out my story to see a sneak peak of what our Christmas pajamas will be... we tried them on and then tried on foxy’s matching pair 😍😍 so stinking cute! Also head to my story (or look into my best of 2018 highlights) to see the spontaneous dance @stephenmayo_jr and I had with my wheelchair 😂😍 It’s been such a great weekend with Stephen and a great kick off to our week with the dog 💕 #blessed #shibainu #dogmom #cuddleseason ❄️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness

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