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Living the Chronic Illness Life

The Girl On Fire

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Re-purposing the mason jars from the wedding! One of the ways I am repurposing them is to paint them to put succulents in them. My new sister in law and I painted them and she made a pretty emerald polka dotted mason jar. Such fun! #masonjar #masonjarenthusiast #sisters #paintnight #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 am a little late to post this because my awesome dad let Caitie and I miss the festivities at home to go to a concert on Father’s Day. My dad made so many pieces of my wedding possible. He helped engineer my brace to make it so he could take the weight of my leg with his hands so I could (with help) walk a little bit and even dance! We danced to unforgettable and it was just perfect as it is our song. In the second picture those were socks I gave him that day as a special momento. The third picture is him wheeling me most of the way down the aisle... then we both were emotional as I got up and fulfilled my dream of walking down the aisle. That dream came true because of you dad. That was all you. Thanks for officiating our vows and rings and for literally always helping me walk through life (and for wheeling me when I can’t.) I love you daddy 💛 #happyfathersday #iloveyoudaddy #fatherdaughterdance #wedding #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
So this is kinda the same as bed rest... right? 🤣🤣 life isn’t perfect and my body is also far from perfect so I choose to spend my spoons making memories... even if I use all next weeks spoons. Thanks bae for finding these tickets so we could see @5sos before you left for college. Now this potsie is going to cover herself in ice packs to try not to faint in the heat 😂 #kiss108kissconcert @kiss108 #youngblood #makingmemories #spendingmyspoons #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
|The sun will come out tomorrow ☀️| Just watching @friends with Nanny and dozing off with my best furry friend 🐾 Foxy must have just known that I needed her because she was laying on my feet for 3 hours. This is a big deal because this is Foxy’s form of cuddling and is very rare. I think she knew I would need her extra loving after an exhausting day of testing yesterday, post anesthesia recovery blues, and a very disappointing appointment this morning. Thank you to those who listened to my frustration and tears and thank you to those who are respecting my silence while I process how to proceed treatment wise. Also @jcnolin11 is amazing and I kinda love him. No matter how bad things get to know that he is my #1 supporter and believer and advocate makes challenges easier to face 😘 💉Fun fact they took so much blood yesterday the nurses joked that it was like a reverse transfusion 😂 #tgif #dogcuddles #dogmom #sleepitoff #thesunwillcomeouttomorrow Thanks @mauramaginnis for proofreading this for me. #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Sometimes even when you are feeling crappy and have joints dislocating, you just need to have your bestie come pick you up and take you to the nail salon. It was a short outing but one I am so thankful for. I was so tired when we got home but it was good for everyone involved. I got out of the house (and out of my bed!!!) for something besides an appointment or hospital stay, Jared got some time to himself to relax, and Maura and I got to hang out. Today I took care of myself by using up my spoons to get my nails done and that’s okay, sometimes you need to spend your spoons on your mental health and that’s okay . 🥄Do you ever use your spoons for your mental health? Tomorrow I have a lot of testing that has me anxious so today was the perfect day for some distraction 💅🏼💕 so don’t mind me over here just continuing to celebrate my birthday in mini celebrations all month long with all my people 🎂 Thanks @jcnolin11 for this pic and for carrying me into the car & thanks @mauramaginnis for inviting me and taking my loopy self with you today! #livelifehappy #makememories #neighborsagain 🧜🏻‍♀️ and yes I went with a mermaid look with a color that is black with purple and green undertones 🐠 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Had a ruff 🐾 day and needed a snuggly dog 🐶 thankfully the Maginnis’s loaned me their dog to cuddle with for a little while. Thanks @mauramaginnis I really needed this today. In short today my body was sponsored by: CVS pharmacy, a loving family, and a cuddly dog 💛 Because of Cassie’s circumstances, this message is approved by @jcnolin11 ✅ #dogtherapy #puppy #cuddles #fullheart #recovering #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 proud of this girl right here 🎓 #graduation #newchapter #gardnerwebb So thankful that despite a dislocation, Jared and I were able to be here today. #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 is finally up! The first of many #wedding blogs is up, this post just features some of my favorite photos from the day and shows the overall day! Click the link in my bio to check it out! Thanks @ashleygreenphotography for the amazing photos! #weddingphotos #ashleygreenphotography #weddingblog #weddingday #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Nothing like pet therapy to make a hospital day brighter ☀️🐾 #pettherapydog #thanksriley #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness PC: @jcnolin11
Thanks everyone for the birthday wishes, not how I wanted to spend my birthday but it was where I needed to be. Still had some confusion and got partially treated, but still disappointed at how #pots is treated by doctors. The best gift anyone can give me this year is donating to @ehlers.danlos and/or @dysautonomiaintl you are donating hope, awareness (which lead to better care and teaching doctors that POTS is REAL) and you give us a fighting chance at finding a cure. Praying for a better tomorrow 💛 #birthdaygirl #thankseveryone #findacurealready PC: my amazing advocate & husband @jcnolin11 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
One month ago today, I married my best friend ✨ I have so much to say so instead of writing a long message, I will just sum it all up with this: Jared, thank you for doing life with me everyday. Thanks for the good days, the hard days, the hospital days, and all the days in between I love you 🤟🏼 #mrandmrsjarednolin #cultivatelove #initforthelonghaul Also thanks Gillian for taking this for me 😘 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
|| The Lord gives strength to His people; the Lord blesses His people with peace. -Psalm 29:11|| Man... our hearts are heavy today. Since getting back (well really since the wedding) my body is not doing a very good job at being a body. I love so many aspects about my medical teams but having a genetic condition (EDS) that is mainly treated at children’s hospitals (even when you are an adult and are married) can be ridiculously challenging at times. I am so grateful to have a team that has followed me since the beginning and gives me and many other adults great care in these rare conditions... but some aspects of this disease- well really the extra conditions that come from EDS- those hospitals don’t always do the greatest job with so finding new hospitals and teams are very stressful. Right now we are fighting for a PICC line after the most recent flare and the continued flare. Please join us in prayer as we navigate these tough waters, and pray that God gives us the endurance to continue to walk through what He is asking of us . The other day I posted a flashback to the year things started to rapidly progress in college, and looking back I thought it was the worst it could get. I was wrong, but earlier today I had the blessing of having my most trusted friend come over and cry with me in these struggles. She brought up that photo and reminded me that we have gotten through all the curveballs before, and we will continue to do that now. I don’t know what this weekend has in store for me (I know what I hope will happen but I also know what will most likely happen) but what I do know is that Jared and I will make the best of it. We are going to do what we have gotta do to take care of this body God had blessed me with living in- even when I don’t feel as grateful as I should be for it. #dowhatyougottado #livingthechronicillnesslifetogether #prayersplease ☀️ #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Oh how looks can be deceiving. This month this EDS awareness month and my braces and wheelchair typically show people that something isn’t right, but no one truly sees the battle I fight everyday. You would assume from this photo that I am having the time of my life- and for some of it I was! It was amazing to experience Nassau beaches and what life is like there. It was amazing to be spending time with my husband. It was amazing to be away from the hospital for a week! ☀️ . What you can’t see from this photo is that I was suffering in the heat, my HR was so high I was on the brink of passing out, and Jared had to hold me in the water to help me cool down and just be still. We both still made the best of it because we were not going to let my body dictate our emotions and experience, but it wasn’t something we could just ignore either . ☀️ . Everyday Jared and I work to find a balance between focusing on what my body needs and focusing on what we need to mentally stay healthy. We don’t want to be so tuned into my body that it controls our lives, but we also cannot deny the daily fight my body faces. Today I have been meditating on Romans 8:28, “And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.”. ☀️ . We may not know why we are in this fight, but we know that we are fighting for a reason. We don’t know what that reason is so for now we are just going to try to glorify God in this fight. ☀️ . What keeps you hopeful in times of distress? #cultivatehope #livingthechronicillnesslifetogether #honeymoon #caribbean #beachlife 📸: @jcnolin11 #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Flashback photo to my freshman year of college looking way younger than I was 🤣 Anyways this month is #edsawarenessmonth and I’m a little late to the game so here it goes. EDS is a connective tissue disorder that affects your skin, organs, joints, ligaments, blood vessels/veins, gums, etc. As one of my orthos has said “your ligaments are garbage.” 🌀Imagine that your ligaments and tendons were made out of chewing gum instead of crazy glue. (thanks @strongerthanpots for the analogy) that’s why people with EDS have so many subluxations and dislocations. So when we look like we have been in traumatic accident with all our braces on, most likely we just tried to get out of bed. . EDS affects your whole body and is quite progressive. It affects things like your aunotomic nervous system- POTS, your digestive tract- gastroparesis or IBS, your pain management- CRPS, your fatigue- ME/CFS.... the list goes on. Many people with EDS have to fight for their treatments and for the treatments of the extra conditions they have accumulated by fighting EDS. Jared and I are fighting for treatment right now and this week will determine if we need to seek out other doctors and hospital for care. We are being brave and you are too. 📢‼️You deserve to have your symptoms acknowledged, you deserve to be heard, and you deserve to be treated and to be treated FAIRLY. Keep fighting and know that we are cheering you on. 🚻 for all my abled-bodied followers here’s how you can participate in EDS awareness month: ♿️take the stairs and save the elevators for those who need them #cruiseshipproblems ♿️don’t ask someone what happened or jokingly insinuate you know what happened to them, just say something like “I hope you feel better soon.” Or “keep fighting you’re doing great” ♿️ most importantly be kind because you never know what someone is fighting (oh yeah also don’t tell us we are to young for this because trust me, we wish that were true.) #livingthechronicillnesslife #eds #awareness #themoreyouknow #spoonie
Our honeymoon was filled with love, laughter, and many hours spent waiting for the elevator 😂 #takethestairsmoreplease Seriously we had a great trip outside of my flare. Having POTS made most days really hard to function and breathe, but hopefully we are coming home with a good plan of action for frequent infusions #PICCline (cross your fingers!!) Right now we are getting ready to drive home and go straight to the hospital as I am doing so poorly. It is disappointing in the care I have recently received from my hospital in regards to dysautonomia but we have to keep fighting. Regardless I am so thankful for this trip.. it was a nice partial break from reality. Now that we are home work starts again on Monday, unpacking continues, and treatments start back up. Thanks @royalcarribbeaninternational for a great cruise we will be back again! Also shout out to the beach puppies that made Nassau beach extra special 🐾☀️ and to my DAD who is officially a DOCTOR TODAY!! And a special thanks to my in laws for taking good care of me last night as we prepare for the hospital today. #honeymoonvibes #royalcaribbean #cruise #bahamas I love you @jcnolin11 😘 #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 it is pouring out as we are preparing to leave, it was still a magical day ✨ thanks Disney for the honeymoon memories and magic ✨✨✨ #disneymagic #magickingdom #honeymoontime #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 such a great cruise so far! We are on our way to Disney now ✨ things aren’t the easiest but we are making the best of it and taking lots of naps. Thank you to everyone who made it possible for us to come! Btw doesn’t Jared look so handsome for formal night 😍💯 #royalcaribbean #cruise #honeymoon #honeymoonvibes #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
That’s right, my “in a POTS flare” body made it to NJ to get on our cruise ship tomorrow for our honeymoon. It has been stressful to get here and hopefully when I return my amazing nurse (@nursecoachdeb 😉) will have a good update for me about a PICC line for at home infusions so we can limit hospital stays!!! Big thank you to my rock @jcnolin11 for all he does for me in and out of the hospital, my family who worked so so hard to get us here (including all the long nights, tears, and tough hospital discussions), and for my in laws who have made this honeymoon possible with the condition I am in. It was a group effort! Also exciting update: I got a NORMAL BP tonight which is huge! The flare is still working against me, but hopefully we will hit a turning point and the crazy HR’s, BP’s and syncope episodes will STOP so I can stop worrying about chest pain and start enjoying our honeymoon! Here goes nothing ⚓️ #honeymoontime #royalcaribbean #cruiselife #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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