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Living the Chronic Illness Life

Intentionally Living Spoon By Spoon

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Welcome to Living the Chronic Illness Life!

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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

Another weekend to stock the med cart with the weekly supplies. Another weekend to refill all the med containers. Another weekend to put a new CGM in. Another weekend to access my port. Just another weekend 🎗 I think about how people imagine those with chronic illnesses spend their days vs. what those with chronic illnesses actually spent their days doing are very different things. People always joke about how hard it is having to be on the couch all day and watching tv or how “lucky” we are that we don’t have to get up for work. This couldn’t be farther from the truth 🎗 My body is a lot of work and requires lots of maintenance. Bi-Weekly taping, daily joint corrections + relocations, 4 sets of meds a day, weekly PT, weekly doctors appointments, infusions, emailing doctors, rescheduling appointments, treating lows, watching for and dealing with allergic reactions- I mean the list goes on and on. As exhausting as my body can be I miss working. It is so hard to have a disabled body with a able bodied mindset 🎗 Yes my body is my job and I am not ashamed of that, but it sucks when you wish you were living the life you imagined. Despite all of this though as I have said before God gave me this imperfect body and while I wait for a cure (or until I get to heaven) I will do my best to maintain this body and worship God with my new “job” 🎗 He called me to love my body and called me to take care of it, do I wish He called me to something else... of course! Yet here I am doing all the things, honoring Him with what He called me too 🎗 #worship #allforGod #livingthechronicillnesslife

The last Friday of every month this #powersheetprepday I wanted to give you a glimpse of what it consists of 🎉 Side note: my good friend Lauren and I normally do our prep work together, and Lauren even though it’s not on video- I actually DID remember to do the month in review before jumping to the month ahead 🤣 This month I did an ice cream cone technique with the dots. Warning ⚠️ it is MUCH more labor intensive and frustrating than it appears 🤷🏼‍♀️🤦🏼‍♀️😂 I can’t wait until August starts so I can show you a detailed picture of my tending list! Also for those wondering yes, I have started to make my own wildcard pages! 🎉 Okay that was my exercise for the day... back to the couch I go 🤣 For more details on powersheets click the link in my bio for the “spoonie’s guide to powersheets” or check out @cultivatewhatmatters 🎉 #powersheets #cultivatewhatmatters #livingthechronicillnesslife

“Look to the LORD and his strength; seek his face always.” 1 Chronicles 16:11 📖 It can be really hard to cultivate a relationship with God. If you told me 7 months ago that I would spend 1.5-2 hours alone with God almost everyday- I would have thought you were CRAZY! Over time, little by little, I was able to take a dull morning devotional into a thriving morning devotional, and not only that.... It turned into a time that I look forward to each day. 📖 I get a lot of questions about how I did this, what tools I use, and what my morning devotional looks like. So I decided to write out a blog post to answer all your questions! I also reviews the different products I have used and recommend. 📖 Click the link in my bio to head to my latest post on creating a time with God that you LOVE 📖 #cultivatewhatmatters #timewithgod #livingthechronicillnesslife

Today has been a day. I have not been well since this weekend. I knew I would pay for traveling but didn’t expect my management tools to malfunction 💛 This morning after my write the word I felt like I couldn’t continue. I was so fatigued and drained so I just opened my bible and prayed. I have a prayer list that I go through daily for our family, community, and future. Normally I pray out loud but I was so drained I didn’t even feel I could do that. I don’t know if it’s just me, but if I don’t pray out loud I get really distracted. Despite my own distractions (which I apologized to God for multiple times 😂🤦🏼‍♀️) I just sat quietly and prayed. 💛 I wanted to complete everything on my list and do a full devotional time, but I just couldn’t. So I just sat there in my bed in prayer. 💛 Today this was my best. I gave Him everything I had. As I sat there in bed, I felt Him whispering to my heart and saying, “it’s okay, I know this is all you have. Thank you for giving me all you have.” 💛 God doesn’t discriminate- if our best is being a missionary in Africa that’s all He wants. If our best is laying in bed praying prayers through brain fog that’s all He wants. He wants you and your heart, no matter what that looks like. 💛 #mybestisenough #heiswithyou #livingthechronicillnesslife

Resting upon resting upon resting . Last night when we got home we ate dinner as I hoped that even though I hadn’t been able to eat all day that I would be fine. Within 2 hours of eating I was dry heaving, dealing with stomach distention, and in so much pain. To make a long story short I was up until 5 am having everything I ate evacuating my systems . So I’m just going to rest. Keep my team in the loop. Follow their lead. And take things spoon by spoon . I am so grateful that my family came out to visit us even though I was on the couch the majority of the day.... and not only that- Foxy was with me for a little while and as you know I truly cherish the time I get with her . Anyone else taking a Sunday snooze today? 😴 #resting #shibainu #livingthechronicillnesslife

This is real life. Last night when we were settling into bed my IV pump stopped working... one the hottest weekend of the year. We had a plan going into this trip to make it as manageable as possible on my body. ☀️ This was not ideal. All my vitals are insane and syncope is present. Thankfully Jared and I figured out that if we didn’t activate the clamp we could do a gravity drip. ☀️ Shoutout to the amazing home health team we work with who made sure I had a new pump by the time we arrived back home. So now I am going to take it easy and let my body recover. I see a couple days resting on the couch with the AC blasting in my future. ☀️ I am so grateful that I woke up this morning to see the sunrise while it was cool and breezy considering my day was spent on the couch. ☀️ If you also had an unplanned emergency/problem today with the heat and couldn’t do what you wanted- know that it’s okay. Our bodies are imperfect, and when we listen to them we are honoring the bodies God blessed us with. Yesterday I did my best on the beach. Today I did my best on the couch. All we can do is our best, that’s all God asks of us- so I will lay here and worship Him right where I am at in the body I have. ☀️ #POTS #worshipalways #livingthechronicillnesslife

Having family that lives on the beach is so nice! Even though I am dealing with a miserable shoulder, sitting by the beach when it’s nice, breezy, and cool is the best 🌊 One more day left of our vacation- and we aren’t going to waste a minute of it! Granted having a shoulder that has been fighting the tape is not ideal. I will probably pay for this trip tomorrow... and maybe more than that- but I would rather be in pain on the beach than stuck at home. I’m so grateful that we have the management tools that allowed me to make that decision. Sometimes I don’t get that option to try to push, but today I was and for that I am grateful. 🌊 #ehlersdanlosproblems #oceanviewhome #livingthechronicillnesslife

We may or may not have been getting Etsy shop listings done 🙈 ....Big things are ahead for this talented girl 💕 #sisterinlove #etsy #livingthechronicillnesslife

We didn’t get pictures of the blankets and tank tops we tie dyed, but we did get pictures after a left-over-dye-fight began 🤣 Medically speaking last night was a disaster I couldn’t stop the lows despite every effort and barely slept. Thankfully we took the morning slow, Joanne made awesome waffles and then we tie-dyed 🌈 I may not have a lot of spoons but that’s okay. I love where I used them and have no regrets.. but will now veg on the couch binge watching wedding reality shows with my sis 💕 #happy #shekeepsmeyoung #livingthechronicillnesslife

Today we had a slow day, but a great time 💛 we slept in and then got ready for the day. After our long trek out to go to Massachusett’s first edible cookie dough shop! 🍪 It is so rich but so good. Then we exchanged gifts and are now just resting. 🍪 My body is really out of whack and we don’t know what’s going on. I have felt like a zombie all day. But I am beyond glad that I pushed myself to celebrate 🎉 and tomorrow will surely be a rest day lol 🍪 #bestfriends #birthday #livingthechronicillnesslife

So today is our birthday... our “fraternity” birthday 😉 💕 For anyone confused tune into my story tomorrow as we will explain why it is named that way 🤣 (and I will save it to my “Twinkie” highlight.) We thought we would celebrate today with a classic sleepover! Except we don’t have the same ability to stay up late like we used to lol 💕 Here’s to many more years of friendship, love and laughter 💕 #friendship #sleepover #livingthechronicillnesslife

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