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Living the Chronic Illness Life

Intentionally Living Spoon By Spoon

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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

You are stronger than you think 💭 You are stronger than your physical limitations 💭 You are stronger than any label placed on you 💭 You are stronger than broken dreams 💭 You are stronger than lost opportunities 💭 You are stronger than other people’s ignorant opinions 💭 You are stronger than you were yesterday 💭 You are stronger than your body makes you believe 💭 You. Are. Stronger. Than. This . ...and you are stronger because of it . #stronger #notodaysatan #livingthechronicillnesslife PC: @joanne.j.nolin

I meant to post this last night, but we had a great night! Stephen took this photo but wasn’t in it, but we had such a fantastic weekend with him! We celebrated his birthday and the fact that he had such success with nationals! 🌟 Also check out my stories for a special birthday shoutout to @caitiemayo 🌟 #shibainu #familytime #livingthechronicillnesslife

I don’t know about you, but he’s feeling 22 🎉 Happy Birthday my love 💛 you are amazing and I am so blessed to be your wife and joyfully support you as you lead our little family 🎉 You are the smartest person I know and my favorite and most creative caretaker (I mean look at that hydroseal/tape job- it’s supreme 😉) You always jump at a challenge whether its with life or my body with the most positive of spirits 🎉 Jared Nolin you are my greatest treasure and I love living life with you! I can’t wait to see you flourish in your new job venture as you selflessly provide for us 🎉 #happybirthday #besthusbandever #livingthechronicillnesslife

We had such a great time tonight. No one loves fireworks more than my grandmother and I. As an early birthday present for her we knew we had to come. Yes it rained and so we moved to the car (as you can see from the video) but that did not put a damper on the fireworks or our enjoyment 💥 This is what Cultivating an intentional life is all about. Being present. Making memories. Loving people well. Worshiping Jesus. + choosing joy in all circumstances 💥 Today we did all of those things. Even though it didn’t go perfectly, we aren’t going to spend time wishing it had been perfect, we are going to enjoy all the laughs and memories made here today 💥 #choosejoy #happybirthdaynanny #livingthechronicillnesslife

Today I have done a lot of thinking. As I was doing my morning devotional, a worship song came on that I had choreographed to a couple years ago. I was journaling and I just stopped and poured all my rambling thoughts to God . After I brain dumped, I went back to writing, and this was what came out of that: “Lord, I miss dancing. I know that I worship You now with how I care for my body and how I love people well, but I miss worshiping with my body rather than worshiping by caring for my body. Give me the strength to not be held back by lost dreams. “ If today you are feeling unsettled about where your body is at compared to where you were before illness, I challenge you to invite Him into your emotions or as I say a “brain dump.” He will meet you there in the mess I promise. No thought is too big or small for Him to handle . ....Or I might be thinking about how free I felt before we taped like when I didn’t have tape on when we took this photo 🤣 I’m totally joking though lol as much as I hate the tape being on it makes my shoulders feel so much better. Anyways if you want to check out this mask or the others up in @joanne.j.nolin shop click the link in my bio 😉 #worship #chronicillness #livingthechronicillnesslife

Matching with foxy is probably my newest favorite thing! This headband and bandana set Joanne made are AMAZING and I’m OBSESSED 🐾 This is the level of extra that I aspire to attain 🤣 should Joanne add these headband-bandana sets to her shop? Vote in my story or comment below! 🐾 #shibainu #dogmom #livingthechronicillnesslife

“Let’s wheel!” -Joanne ☀️ We have had such a blast this week (and it’s not even over!) every morning Joanne and I go on a “walk” and each day they get little bit longer! It has been awesome, it’s a great way for us to start the day. ☀️ Joanne.... it’s official you are never allowed to leave 🤣 you live here now and are my walking partner 🤣 also if you love this mask you can find it in her Etsy store! Link is in my bio! This specific mask is the “Cultivate” mask. We chose it because it looks just like @cultivatewhatmatters logo and we all know how big of a fan I am of theirs!! ☀️ #morningwalks #sisters #livingthechronicillnesslife

When two plant addicts walk into the garden center.... crazy thing happen! After a really stressful day yesterday where we don’t know what’s going on my port (and hopefully we will have answers on that soon) I’m so grateful that Maura encouraged me to choose joy and to go out shopping anyways! so enjoy these hilarious pictures of us trying to hold onto all of our plants, soil, and pots! 🌱 Check out my story to see all of the new plants we got! 🌱 #crazyplantlady #choosejoy #livingthechronicillnesslife

Lord, thank you for giving me something that makes saying goodbye so hard . As tears fall as I write this post, I am also smiling at all the memories. @dancersost was my life, and our future. I mean Jared asked me to marry him with the official company paperwork- but my body had other plans . I don’t know why God allowed something He opened all the doors for to have to end, but I do know that His plans are greater than the dreams He planted in my heart and any disappointment I face. Knowing this has brought so much comfort to my heart, but does not take away the sting of our reality . This was the most life-giving job I have ever had, and I cherish all the: memories we made, obstacles we conquered, mistakes made that turned into lessons learned, every “ah-ha” moment of celebration a dancer had when they accomplished something they didn’t think they could, and opportunities to serve the ballet community . We never imagined when I was diagnosed in 2015 that things would progress so quickly. Yet here we are living despite it all. Right now my job needs to be taking care of my body, as hard as that is and as deep as that reality pierces . To every dancer, parent, teacher, co-worker, and studio owner- thank you for allowing us to be apart of your journey. We wish you all the best . Last year, we looked at everything and decided to keep OST open for one more year, but if I was doing worse or hadn’t improved we agreed would officially close. There is peace that has been found in the decision to close, but I can’t explain how much my heart is hurting . To anyone who is grieving a life that could not be, this prayer is for me and for you : Lord , Help me grieve while honoring you through it. Allow this to be an act of worship, and every moment I feel like I can’t continue on, give me the strength to say , “I can do hard things for you Lord, even this. “ #endofachapter #dancersost #livingthechronicillnesslife

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