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Living the Chronic Illness Life

Intentionally Living Spoon By Spoon

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Today is #caretakerappreciationday and I want to highlight my favorite one 😍 caretaking is not easy and I don’t think people realize how much Jared can do and does do. My body is not easy to handle for myself or anyone else, yet he wants to tackle everything my body throws at me together with God’s overwhelming grace . ♥️ . My parents were my original caretakers and they made the transition to Jared being my caretaker overall seamless. They slowly started teaching him and giving him more responsibility. They brought him to appointments to learn the “medical lingo” as I say. Then overtime he started slowly mastering every task and by the time we got married we were doing everything on our own . ♥️ . I know I’m going to forget somethings but as my caretaker Jared: accesses/deaccesses my port, handles my medications (when I can’t on my own), drives us to and is apart of every medical decision/team meeting, relocates all my joints, does joint maintenance weekly (joint corrections), washes my hair, tapes me, carries me, sets up IVs, puts in my CGMs, is a master wheelchair driver, and so much more . ♥️ . Thank you Babe for everything you are my real life super hero. I love you so much . ♥️ . Also thank you to Dad, Mom, Caitie, Stephen, Maura, Joanne, Grandpa + Nanny and anyone else I’m forgetting along with all of you who cheer me on daily! . ♥️ . #caretaker #thankyou #livingthechronicillnesslife

I couldn’t finish out my time back at my parents without face masking with Stephen! Criminal Minds and Clays Masks go well together ✨ I’m so grateful that while Jared was away my family took such great care of me and this rebellious knee cap of mine. Lots of laughs, some tears, good soul food, cuddles and some much needed self care took place this long weekend. ✨ Thanks Dad, Mom, and Stephen for all the distractions and ice packs! And of course Foxy for the brief time she allowed me to cuddle her ✨ #selfcare #gratitude #livingthechronicillnesslife

Sometimes it’s so hard to see the good... I have had 4 full dislocations this past week which is more than I have had in one week in quite some time. This knee cap dislocation last night was the worst one yet for my knee . Friends, I’m gonna be real, today there have been a few meltdowns over plans/activities I had to cancel because of my unpredictable body. Just because I had to cancel and do what’s best for my body doesn’t take the sting out of it . So where is the joy? Where is joy when nothing goes the way you hoped? Many things have tried to steal my joy today and some have almost succeeded between finding part of my IV supplies order wrong when they were dropped off to saying goodbye for the next few days as my wonderful husband supports his family down south (I 100% support him but we haven’t been away from one another outside of one 24 hour stretch in literally 2 years which is hard) to simply being annoyed with myself for staying in pajamas all day (and I’m sure a billion of other tiny things) so again, where is the joy when all those things creep into or even dare to invade your heart space? . Well they come in dog snuggles, I love you goodbye kisses, laughter at stupid jokes, and in His ABUNDANT peace. Yes there have been tears of frustration and tears from laughter- you can have both and still validate the hardship behind the smile. Even if there are more tears and than smiles, we are just going to take it day by day, laugh by laugh, tear by tear, and spoon by spoon. . So friends, alongside the road of joy is always the road of suffering and until we are brought into perfect we will always be riding both tracks. In the wise words of @kaywarren75 , “if you’re going to experience joy, you must choose it—in spite of, even if, and in the middle of everything else.” . #choosejoy #EDSsucks #livingthechronicillnesslife

To say that my life has not gone the way I planned would be the greatest understatement ever. I never imagined that at this time in my life I would be where I am today. As I sit here and watch the leaves fall my mind starts to wander and question why God has allowed my life to be this way. Yet in this question I don’t ask in anger, I ask with peace knowing a probably won’t ever know 🍁 5 years ago today I almost died. My whole life and perspective of who God is changed. As much as this anniversary stings and I think of how many hard things God has asked me to walk through I strangely feel grateful and dare I say even a tiny bit joy-filled. Now to clarify not the EMOTION of gratitude and joy that is filled with perfect circumstances and confetti, but the peace that comes by making a CHOICE to be grateful and joy-filled. 🍁 Just like love is a choice, so is gratitude and joy. Life is far from perfect and the struggle is still very present and very real (and it is SO important to grieve for those things) yet I can still find peace, hope, gratitude, and joy. I want to be clear I do not choose to find these things because I am “strong enough” or “inspirational” or anything like that. I choose to find these things because I choose to find Him. 🍁 My joy, hope, gratitude, and peace are NOT based on my circumstances (because if that were the case I would never have any of those things) but they are based on His abundant grace. 🍁 5 years ago today I was ready to die, and even though life is still hard, I am so grateful that I am still here. Again my life hasn’t turned out the way I would have thought, but He has brought so much good out of so much hurt. I want to leave you with this quote that has been on repeat in my head all day , “Perfection intimidates. Compassion inspires. And in that you will finally find the why. Why did this happen? Because there’s someone else in the world who would drown in their own tears if not for seeing yours.” - @lysaterkeurst 🍁 #5yearsagotoday #joyisachoice #livingthechronicillnesslife

Everyday we get the opportunity to embrace our small. 🍂 Having a chronic illness wasn't your choice nor is it your fault, but somehow those truths don't matter when you're dealing with disappointment or the loss of a dream. 🍂 Do you ever have those days where you find yourself with a drawn out sigh as you are thinking of all the things being lost or gone? 🍂 I know this feeling all too well & in this weeks podcast I want to share with you how God has taught me to embrace the bigger meaning while living joyfully in the small! 🍂 Yes, even with your chronic illness God has BIG plans for YOU. Of course they're not all revealed at once,but they are still your’s to grab hold of! 🍂 We embraced the small by carefully taking off my braces and sitting in the leaves while enjoying these AMAZING new fall headbands and masks. We embraced the small by taking a victory in sitting outside for a couple minutes basking at this gorgeous fall weather despite the fact that my body couldn’t handle going on a ride/walk through our neighborhood. 🍂 Click the link in my bio to listen to the latest podcast! Link to buy the mask I’m wearing is in my bio link as well! 🍂 #chronicallycultivating #podcast #livingthechronicillnesslife

So today has not been the greatest day, and I for sure cannot raise my arms above my head with a dislocation BUT I’m just SO excited to spend the weekend with my fav! 💛 So enjoy this photo of us from the summer time-and hopefully we can maybe get a fun fall picture this weekend- but even if all we can do is hang out on the couch...we will still enjoy one another’s company! Because our joy is not contingent on the circumstances- our joy is found in spending time together with those that matters and for that I am thankful 💛 #sisters #sisterinlove #livingthechronicillnesslife

When you have a chronic illness and cannot drive or get around on your own, you lose a lot of independence and every what-once-was-simple task becomes a bit more complicated. Ella made a simple task- truly SIMPLE today! ✂️ Ella and I met at FSU through campus ambassadors and were in the most amazing small group together (no this is not up for discussion our group was the best!) ✂️ Ella and I have watched God so faithfully bring us through so many challenges and seasons. She was also apart of the hair and make up team we had for the wedding. Today she came to my house and cut my hair ✂️ Getting out to go to the salon is an event on its own but then I have to think through that I might be allergic to a product someone else is using or that is used on me (and pack spare meds); how my neck will be after being washed; is the place truly handicap accessible, and so on and so forth-so basically it’s a lot! She made it simple by coming to me and cutting my hair. If you are in the MA area and are housebound- not worries! She is amazing and has the kindest spirit and is hella talented! ✂️ Thank you Ella! I love you!! #elladoeshair #grateful #livingthechronicillnesslife

The 2020 Powersheets launch was such a success today! Tomorrow I will answer all the questions you submitted from the question box in my story! 🎉 What cover did you choose today?! As you can see I am team #blooms! 🎉 #cultivatewhatmatters #powersheets #livingthechronicillnesslife

Today was nothing short of amazing. We spent all day together making what matters happen.... all from the sunroom couch. From morning write the word devotionals and tea to book study and Chinese food we embraced and rejoiced in the gift of life giving friendships and godly fellowship. 🌱 So many good things were cultivated today and we even officially picked out the goodies we will be ordering on launch day! 🌱 Today was the most relaxed (and mostly phone free) day- and I loved every second of it. Maura you are amazing and I love you with my whole heart. 🌱 You did my heart so much good 💛 Headbands by: @joanne.j.nolin ☀️ #friendshipgoals #cultivate #livingthechronicillnesslife

You know how yesterday I talked about goal setting with a chronic illness? 🌧 Well one of the things I talked about was how I try to find peace in unplanned rest days... and today I got another chance to practice what I preach 🌨 I am in a #pots flare to end all flares. We decided to follow what Jared and I call “hospital protocol.” As always we follow my teams treatments, so you may be confused as to what’s different. Well, we follow the regular flare treatment med/IV plan while taking extra safety precautions I.e. having someone help me go from sitting to standing, I only get up to go to the restroom, we heavily monitor my vitals, along with multitudes of other things. Most importantly: we want to avoid fainting at all costs; and I am happy to report that although I don’t enjoy taking these precautions we didn’t have any drama today- so cheers for accepting help! 🌨 But in the midst of all the hard parts of the day as I felt like death, for a brief minute foxy was on my lap while my dad came out to visit me and he snapped this picture of us (swipe right.) ☀️ Time with Foxy helps me get through tough days. Laughing with my sisters helps me get through tough days. Watching CSI with my dad helps me get through tough days. Forehead kisses and encouragement from Jared helps me get through tough days. The list is endless but all those little moments get me through the tough days and for that I am grateful ☀️ Another thing that helped me get through the day was being surprised to be apart of the catalog trial with @cultivatewhatmatters, where @juliehomen and the whole team did an AMAZING job. That was just some extra unexpected yet perfectly timed sunshine (God is so cool, right?!) ☀️ #littlethingsmatter #flare #livingthechronicillnesslife

|| I am so grateful to live in a world where there are Octobers || 🍎 So this might be my new favorite picture ever. I am blessed to not just have one sister SLAYING the game down south, but I am blessed to have another sister to love and cultivate a relationship with up here. 🍎 We all went to the Apple orchard to pick up fresh apples to make our annual Apple & Oat Cookies that will be baked tomorrow!! 🍎 This girl seriously impresses me everyday. From her willingness to learn about how to help take care of me to her ability to make me laugh so hard I cry-she is not just my sister but is truly one of my best friends. 🍎 Mask is by Joanne and can be found in her Etsy Shop (that goes off of vacation mode tomorrow!) the link to her shop is in my bio 🍎 #sisters #bestfriends #livingthechronicillnesslife

#powersheets, podcasts, and planning Oh My!! 🌱 Today I got to spend quality time with my mom! She slept over last night and today we recorded podcast episodes (so much truth coming your way!!!) We spent time gazing at the new 2020 powersheet updates from @cultivatewhatmatters while spending time in our current powersheets, and were planning/ talking about the upcoming season and how we can be intentional with our time! 🌱 I cherish this time we spent together and honestly nothing is cooler than a mother-daughter powersheet check in as we both work to live intentionally and presently. 🌱 Thanks mom for a great day.... and for bringing apple cider donuts 😍 I love you!! 🌱 #motherdaughter #cultivatewhatmatters #livingthechronicillnesslife

|| “But they delight in the law of the Lord, meditating on it day and night.” ‭‭Psalms‬ ‭1:2‬ ‭NLT‬‬ || ☀️ One of my goals over the next quarter of the year is to delight in the Lord. I don’t want to just enjoy my time with Him in the Word, but also want to delight in Him in all ways throughout the day. One of the ways I am doing that is delighting in what He has made such as the sunshine, cool breeze, and fresh air ☀️ Fall is my favorite season for many reasons, one of which is the weather. I can be outside without feeling like I’m going to die of heat stroke. ☀️ How do you delight in the Lord? ☀️ #delightinHim #sunshine #livingthechronicillnesslife

Today was a bit of a crazy day but I was able to shower, clean up a bit, access my port, and by the time I got to the med cart I was feeling exhausted . Partway through I didn’t feel right and so I listened to my body as I got dizzy and stopped to take a couple minute on the floor with my legs up to get the dizziness under control (swipe right to see) and then once I was able to get up I did the finishing touches and am now back on the couch resting . Right now life is not going how I planned, but we have a great God and I will lean on Him because His power will be made perfect in my weakness . #legsuplife #delightinHim #livingthechronicillnesslife

I can’t believe it is fall already!! 🍁 We have three months left of 2019, how are you going to spend it? I want to spend it being present and celebrating all of what life brings. Click the link in my bio to check out this latest blog post and get an inside look into my goals for the last quarter of the year. 🍁 #powersheets have changed my life, tonight a couple close friends and I had dinner and then completed out October prep work- cultivating with friends is 10x more fun! Today the 2020 powersheets covers were revealed! I’m #teamblooms, what team are you? 🍁 #cultivatewhatmatters #fall #livingthechronicillnesslife

31 weeks. I had been out of the ER for a whole 31 weeks, but tonight we broke that streak. A bad shoulder dislocation changed the course of our night and now our week ahead . EDS can be so cruel, and I have cried tears of pain and frustration tonight at how my body doesn’t allow me to live how I dreamed of living . Hopefully a good plan will be made (SOON🤞🏼) and we can head home and rest (and yes I know I have a puffer fish face in this neck brace and from crying but it’s okay because that’s all apart of the journey) . “This won't go back to normal, if it ever was It's been years of hoping, and I keep saying it because 'Cause I have to Ooh-ah, you'll get better Ooh-ah, soon you'll get better Ooh-ah, you'll get better soon” @taylorswift #soonyoullgetbetter #edssucks #livingthechronicillnesslife

Sometimes things don’t always work out the way we think they will. Today I went in for a trial infusion which we hoped would go better than it did. We went into it not knowing how my body would respond, but we didn’t anticipate it to make things worse. We hoped that my muscles wouldn’t relax enough to cause my joints to move, but even with tape and braces we had movement. Our hope is tomorrow will be a new and better day and we’ll see better results . I’m grateful that in times like these that I don’t have to rely on my own strength, I can rely on His strength... and it helps that I have an amazing husband to physically be my strength while I’m weak . #livingthechronicillnesslife

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