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Category: Guest Blogs

5 Tips for Traveling for Out-of-State Surgery

March 12, 2020March 10, 2020Leave a comment

When you live with chronic illness, and particularly conditions that are rare, rarely heard of, or largely misunderstood, it can be challenging to find the right team of doctors. Often times the top-rated specialists require traveling out of state to receive the best care possible. This is certainly the case for me. My name is … Continue reading 5 Tips for Traveling for Out-of-State Surgery

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“And the world is passing away along with its desires, but whoever does the will of God abides forever.”⠀ ‭‭1 John‬ ‭2:17‬ ‭ESV‬‬⠀ ⠀ So last month I did something I haven’t done in a long time... I got caught up in the hustle culture. Many people are reorganizing their lives and homes and I felt pressured to “keep up” when God wanted me to stay content in the life I have cultivated at home. I haven’t done something this “type A” in a long time, but it actually taught me three amazing lessons.⠀ ⠀ The first was that purposeful acts don’t always look “productive.” For instance when Foxy needed me, I cuddled her and that was my purpose. On paper it didn’t look productive but it filled my heart.⠀ ⠀ The second was that I don’t need to be afraid of blank lines. Blank lines leave room for God to move! I don’t want to be so jam packed that I miss what He has in store for me. I also have Lauren to thank for encouraging me in this way when we were doing our May powersheet prep; she boldly told me to embrace the blank lines- and I couldn’t be more grateful! ⠀ ⠀ The final lesson that came from my “perfectionist-relapse” was equally as important. Focusing on check marks left me sacrificing relationships with God and those around me. I am so grateful that God revealed to me that if I kept going that way I would be losing much more than those check marks were worth.⠀ ⠀ This season while we are in quarantine I want to give myself room to breathe and room for God to move. Are you leaving breathing room this quarantine or are you hustling? Neither of them are wrong, the hustle just isn’t for me anymore ☀️⠀ ⠀ For more of my thoughts on this topic check out episode 39 “let’s refresh shall we” on the Chronically Cultivating podcast- link in bio!⠀ ⠀ #recoveringperfectionist #cultivatinginquarantine #livingthechronicillnesslife

“Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails.”⠀ ‭‭Proverbs‬ ‭19:21‬ ‭NIV‬‬⠀ ⠀ Last month I over extended myself. I left no room for grief, challenges, flares/dislocations, and most importantly I didn’t leave room for God to guide my days. To be honest I have no idea why I thought an overflowing tending list last month would be achievable, but I am grateful to have had that failure. By not leaving room for life and not leaving room for His guidance, this oversight was a great reminder that if I don’t have room for Him to lead then none of the check marks matter. I want to choose His purpose over the world’s view of productivity. So this month I aim to embrace blank lines, grief, and grace. ⠀ ⠀ My top priority this month is “purpose over productivity.” Sometimes the things that we are called to do and need to do, don’t “look” productive. For example, me cuddling Foxy when she needed me rather than getting work done did not “look” productive, but she needed me and that WAS my purpose that day. ⠀ ⠀ ⭐️Check marks don’t always equal connection. I want to spend quarantine and ultimately my life being purposeful not just productive.⭐️⠀ ⠀ ⠀ This month has started hard, between Foxy’s death and a fall that has caused multiple issues, but I am so grateful for grace. For more on my tending list goals head to my latest blog (link in my bio.)⠀ ⠀ What’s your top priority this month?⠀ ⠀ #powersheets #cultivatewhatmatters #livingthechronicillnesslife

“Great is his faithfulness; his mercies begin afresh each morning.”⠀ ‭‭Lamentations‬ ‭3:23‬ ‭NLT‬‬⠀ ⠀ This week on the podcast I sat down with my dad and recorded one of my favorite podcast topics thus far. There have been so many times in my life where I have not “gotten what I prayed for” yet somehow God uses it all for His good.⠀ ⠀ When I had to adjust to life at home, I just kept thinking “Lord, I was doing what you called me for and made me to do and now I can’t do any of those things. This is not what I prayed for.” ⠀ ⠀ Everything I originally felt called to do believe it or not- I am still doing! Just not in ANY of the ways I would have wanted or chosen; yet I am where God asked me to be and Ge is blessing me all the way. God does not have any limitations and can use us no matter what physical limitations we face, what our status is, or what battles we are fighting. For more on this click the link in my bio to listen to the latest episode- ep 38 “this is not what I prayed for.”⠀ ⠀ As an update: today, as I have been struggling deeply since the fall, my dad came “over” to hang out with me. We have a long standing tradition that my dad and I started as he was one of my original caretakers. Whenever I was in a flare, the hospital, or couldn’t sleep we would watch CSI. We have been through 2 series but have been stuck in a 3rd series (since I got married and we haven’t been together often enough to binge watch tv lol) but we carried on safely while in quarantine. Jared set up the tv close to the deck so we could watch CSI for a couple hours while staying a safe distance apart. Thanks dad for giving Jared time to run errands, for watching tv with me, and being one of my best friends. I love you so much!!⠀ ⠀ #fatherdaughter #chronicallycultivating #livingthechronicillnesslife

“Woe to me because of my injury! My wound is incurable! Yet I said to myself, “This is my sickness, and I must endure it.””⠀ ‭‭Jeremiah‬ ‭10:19‬ ‭NIV‬‬⠀ ⠀ This verse gave me such great encouragement as a teenager. This weekend just has not been my weekend. Yesterday I had a syncopal episode and had multiple dislocations/subluxations and I also hit my head.⠀ ⠀ I am literally being held together by compression braces, pillows, and ice packs right now🤦🏼‍♀️🤣⠀ ⠀ POTS 1 Cassie 0⠀ ⠀ I am so grateful for my #quad and team who made sure we had everything we could need to keep me from even having to potentially go in. Thank you to all of the nurses and doctors who are on the front lines; especially those who are fighting so hard for their CI patients and protecting us during this time.⠀ ⠀ Thanks in advance for your prayers for Jared and I. Jared I am so grateful for you and all you do. For facing the hard days, for relocating my joints, for accessing my port, and for taking care of my line and meds. Bow I know there is SO much more I could list but to add one more: thank you for always being by my side and never leaving me to fight this on my own. ⠀ ⠀ You are and will always be my hero⠀ ⠀ #chronicillness #marriage #livingthechronicillnesslife

“Those who plant in tears will harvest with shouts of joy.”⠀ Psalm 126:5 NLT⠀ ⠀ Today Foxy’s beautiful life came to a peaceful end. When I was figuring out my May tending list I knew that we would be grieving our loss of Foxy. Something so beautiful and heartwarming is that Foxy genuinely loved to stop and smell flowers- especially tulips. This was something we all learned about her when we started fostering her. I had never seen a dog intentionally stop to smell flowers before.⠀ ⠀ This verse came to mind and are my encouraging words for May. Today I planted in tears. When I needed a mental break I went out to the garden and saw that the first tulip is blooming. That’s right, Foxy’s favorite flower was-after a couple weeks of hopeful waiting- finally blooming. I felt so much peace as tears of comfort and sadness rolled down my cheeks. I thought about her and how no matter what was going on- or how rushed I could sometimes be- she would always stop and smell the flowers. This morning before the vet, my mom brought her out to her garden and the tulips were blooming and of course she stopped to smell them along with some of the other blooms.⠀ ⠀ ⠀ My heart is broken but I am at peace knowing we loved her so well and I will treasure the seven years we had and especially these last 38 days of her life. Life is short so always stop to smell the flowers.⠀ ⠀ Rest well baby you will always be my favorite girl. Thank you for loving me through the hardest part of my life and allowing me to love you through the hardest part of yours. You will always have your paw prints on my heart. ⠀ ⠀ We loved Foxy from July 2, 2013- April 30, 2020.⠀ #restinpeace #livingthechronicillnesslife

“Now may the Lord of peace himself give you his peace at all times and in every situation. The Lord be with you all.”⠀ ‭‭2 Thessalonians‬ ‭3:16‬ ‭NLT‬‬⠀ ⠀ Today we gave Foxy back to my family so they can have some time with her after having a seizure this morning. Before we determined she needed to go home to spend her final days with my family (as we have been blessed to have her for the last 38 days) we were able to have our last moments captured with her here at our house.⠀ ⠀ We got her a month after Jared and I started dating in 2013, so it has been emotional to say the least. My family blessed us with some comfort food to treat us in this and for our anniversary. We can’t believe it’s been two years of marriage, and today was another (of many) reminders of how grateful I am to go through the ups and downs with the most incredible man by my side.⠀ ⠀ We don’t really know how to quarantine without her, but we will take it day by day and treasure the gift quarantine gave us which was more cuddles and kisses with Foxy than we could have ever imagined.⠀ ⠀ 2 years down and forever to go. I love you Jared Nolin. I am proud to be your wife and be Mrs. Nolin 💛⠀ ⠀ #anniversary #marriage #livingthechronicillnesslife 📸: @mauramaginnis

“I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. Then Christ will make his home in your hearts as you trust in him. Your roots will grow down into God’s love and keep you strong. And may you have the power to understand, as all God’s people should, how wide, how long, how high, and how deep his love is.”⠀ ‭‭⠀ Ephesians‬ ‭3:16-18‬ ‭NLT‬‬⠀ ⠀ When my days.. or nights don’t go the way I imagined and planned for it leaves a distaste of dissatisfaction and wasted potential. That’s how I felt last night when I never fell asleep. I had a lot planned for the day, due to boredom, I got up around four and looked at all I hoped the day would hold and felt like my day was destined for failure. ⠀ ⠀ Yet I spent some time in prayer and God spoke deeply to me. He wanted an invitation to my day because He is a God who wastes nothing. He didn’t even let me “waste” a day going on no sleep. He allowed so many good things to happen today because He is God! His love and strength was sufficient for my weakness. When we invite Him into our lives and hearts His love grows deep into our souls. Only He can do what He does. So before you discount yourself bring God into the equation because He changes everything.⠀ ⠀ ⠀ #devotional #welcome #livingthechronicillnesslife

“The Lord will surely comfort Zion and will look with compassion on all her ruins; he will make her deserts like Eden, her wastelands like the garden of the Lord. Joy and gladness will be found in her, thanksgiving and the sound of singing.”⠀ ‭‭Isaiah‬ ‭51:3‬ ‭NIV‬‬⠀ ⠀ This verse has been giving me such comfort in these times. He is compassionate on our losses and He will turn broken pieces into blooms. Joy and gladness are truly found in my heart when gardening. ⠀ ⠀ ⠀ If you've been following for a while now you know I LOVE plants and gardening. Not being able to consistently bend down and plant outside or get outside unassisted made the thought of gardening in anything more than pots seem impossible. ⠀ ⠀ Now, I have LOVED my windowsill garden and have been maintaining that for two years, but I really wanted to step up my game. I have done a lot of research, trial and error and on the blog I share 5 ways to make gardening more accessible for you! You can read it by clicking “latest blog post” in my bio or by heading to my blog for the “Accessible Gardening” post!⠀ ⠀ Also check out my IGTV where I show you how to plant seeds without seed starting kits, as I wanted to answer questions for those who couldn’t access/find seed starter kits.⠀ ⠀ Happy Gardening 🌱☀️🌷⠀ ⠀ #garden #planting #livingthechronicillnesslife

“I sought the Lord, and he answered me, and delivered me from all my fears.” Psalm 34:4⠀ ⠀ This time is so uncertain but He is never changing. He will get us through this because only He can. I used to want to be in control of my comebacks, which was foolish of me because His comebacks are always so much greater than mine. ⠀ ⠀ Check out the most recent episode of Chronically Cultivating (episode 36) for more on all of this. ⠀ ⠀ #Godisgreater #chronicallycultivating #livingthechronicillnesslife⠀

“You will bring them in and plant them on your own mountain— the place, O Lord, reserved for your own dwelling, the sanctuary, O Lord, that your hands have established.”⠀ ‭‭Exodus‬ ‭15:17‬ ‭NLT‬‬⠀ ⠀ Something you probably don’t know about Foxy is that she LOVES smelling flowers. When she was much younger and we would walk her, she would literally stop us to smell flowers. She was so tender and careful not to step on them; she would just gently lean in and smell them and keep going. When I got these flowers (only flowers I have that aren’t bulbs or sprouts right now), I brought the down to her level and she sniffed them out despite being mostly blind. I just left the package on the floor and multiple times she came back around the room to smell them (she may be mostly blind and somewhat deaf at this point but her sniffer works just fine!)⠀ ⠀ This reminded me about exodus 17:15 to the point that I wrote in my notes about it and how foxy would smell each flower- never discriminated or thought one wasn’t as pretty she just appreciated God’s creation.⠀ ⠀ When God plants us, calls us, or whatever He has asked us to do for Him as worship, it is on purpose, and He will give us what we need to thrive and grow. It won’t always look exactly like we expected and it might even look different than the person next to us, but flowers don’t waste time comparing themselves to other flowers like us- they just grow and bloom.⠀ ⠀ How you worship and what you have been called to might look different today than what you expected, but know that this pandemic was no surprise to God and He has given all of us what we need to grow and thrive in this season. Please note that when I say thriving, I DON’T mean you need to be hustling and doing ALL the things while you are home. Maybe you are called to rest and snuggle your kids or pets. Maybe you are called to spend more alone time with God. Maybe you are called to organize your office or a junk drawer. Ask Him to guide your day and He will.⠀ ⠀ ⠀ Don’t compare, just focus on worshiping Him and you will thrive no matter what that looks like.⠀ ⠀ #worship #cultivatinginquarantine #livingthechronicillnesslife

“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.” Romans 8:28⠀ Tag a friend who could use this encouragement today! One decade and few month ago, I was in the ER and my parents were told I would be on crutches for a couple days. We had no clue what we were in for and the journey that was beginning.⠀ ⠀ I didn’t want my life to change its trajectory then let alone again, and again... and again. My life has turned so many different directions and I continued to attempt to rebound time and time again. That was when God showed me that I didn’t have to continue to reinvent myself, I just needed to accept where I was at and use it for His good and His glory.⠀ ⠀ He gave my a platform I DIDN’T want with a purpose I didn’t want to claim. I was missing all He had in store for me because I was stuck in seeing all I didn’t have rather than looking at all I did. It’s amazing what happens when we step into what He has called us to.⠀ ⠀ It took a little under a decade, to be willing to share the story He wrote me. I may not see healing on this side of heaven, but while I am on this side of heaven I am going to use what He gave me and what He has allowed.⠀ ⠀ If you are in that place of disappointment and brokenness, I invite you to welcome Him into that. You will be amazed what He can do with your disappointments when you give Him a chance.⠀ ⠀ Click the link in my bio to listen to the most recent episode of Chronically Cultivating (episode 36) to hear more about how He turned my pain and disappointment into power and hope to grow His kingdom.⠀ ⠀ #chronicallycultivating #empowerment ⠀ #livingthechronicillnesslife

“for everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith.”⠀ ‭‭1 John‬ ‭5:4‬ ‭NIV‬‬⠀ ⠀ From transitioning to cultivating life at home taking care of my body to how I think most in quarantine are experiencing-it’s easy for our days and even our weeks can get blurred together. But what I've come to learn is that every day that goes by is a victory because every day that goes by means that I made it through the day.⠀ ⠀ So in effort to stop life from becoming one big blur, I decided to start recording at least one victory made each day. There is no victory too big or too small, here are some examples:⠀ ⠀ 🎉 took a shower⠀ 🎉folded laundry⠀ 🎉quieted the noise⠀ 🎉stayed off my phone⠀ 🎉enjoyed the sunshine⠀ 🎉organized my desk⠀ ⠀ And sometimes just taking care of my body and going through my daily “medical routine” is my victory. There was no other victory. That is it sometimes, and that is totally okay.⠀ ⠀ What small victories are you celebrating today? If you want to hear more on this topic, how I do this in my #powersheets (swipe right for a sneak peek at this springs victories) and more of my own examples click the link in my bio to check out episode 34 of Chronically Cultivating!⠀ ⠀ #celebrate #cultivatinginquarantine #livingthechronicillnesslife

“Truly my soul finds rest in God; my salvation comes from him.”⠀ ‭‭Psalms‬ ‭62:1‬ ‭NIV‬‬⠀ ⠀ No better way to spend a rainy day recovering from a bad dislocation than snuggling her.⠀ ⠀ The rest comes easy knowing where my victory comes from. He has overcome and He will work all this out for His good even if I don’t see it, I have peace knowing He is working while I’m waiting.⠀ ⠀ #rest #peace #livingthechronicillnesslife

“He isn’t here! He is risen from the dead! Remember what He told you back in Galilee, that the Son of Man must be betrayed into the hands of sinful men and be crucified, and that He would rise again on the third day.””⠀ ‭‭Luke‬ ‭24:6-7‬ ‭NLT‬‬⠀ ⠀ Today as we celebrate Easter we have a very unique opportunity. ⠀ ⠀ When we: take away the church services, the fellowship, and communion; miss the Easter baskets, Easter egg hunts, and brunches with your family; wish we had some Easter lilies and palms- is He still just as victorious this Easter as He was last year?⠀ ⠀ The obvious answer is yes but it can be really hard to see that. Life may not look very victorious right now, and you may not feel victorious but rest assured He has overcome the world! He is victorious and He wants us to know this so that we can have peace when things like quarantine threaten to take away the victory He had already given us.⠀ ⠀ We have an opportunity (like I imagine the apostles having when they stayed “quarantined” and locked in the upper room) to say what I imagine they were saying is this time: “Alright God, what are You going to do and how can we be apart of it? How can we serve You? How can we worship You well even when we don’t understand and we are scared and life does not look at all like how we imagined?⠀ ⠀ We are called to live in the victory Jesus has given us no matter where we are and no matter the circumstances we face. Today is still a great day. He is still here. He is still victorious.⠀ ⠀ To hear our whole discussion on this click the link in my bio to head to ep 35 on the Chronically Cultivating Podcast⠀ ⠀ #heisrisen #easter #livingthechronicillnesslife⠀

“The light shines in the darkness, and the darkness can never extinguish it.”⠀ ‭‭John‬ ‭1:5‬ ‭NLT‬‬⠀ ⠀ Joanne, you are a light that shines in the darkness. Not only did your spring launch of masks come out today that you have had planned since January, but your heart to donate to hospitals that need masks makes me so proud to be apart of what you do. ⠀ ⠀ UPDATE: she is sold out! Swipe to the next picture to see the prints she selected for spring. The link is in my bio if you want to take a look. ⠀ ⠀ Congrats on another successful launch all three have been SO fun! I can’t wait until the summer comes for another 💛⠀ ⠀ #sisters #heart #livingthechronicillnesslife

“Let us acknowledge the Lord; let us press on to acknowledge him. As surely as the sun rises, he will appear; he will come to us like the winter rains, like the spring rains that water the earth.””⠀ ‭‭Hosea‬ ‭6:3‬ ‭NIV‬‬⠀ ⠀ Seeing sprouts come through the dirt has reminded me that God is still here. This year the seeds sprouted much faster than expected and I believe that it was one small way that God was reminding me that He hasn’t stopped working. Right now I think it can be hard to see God. ⠀ ⠀ You know, God longs to help us and I think one of the things that for me gets in the way of me believing that He truly does long to help us is when I feel he's being silent. There are times that God is silent, but I have found more often than not the times that I personally am “offended” by His "silence," that He probably isn't really being silent. I’m most likely not choosing to listen.⠀ ⠀ It's in those times where I take those moments and I choose to say, "all right, I'm really frustrated. God, I don't feel like I can hear You, but I'm just going to listen even closer because I know that You’ve got something to say to me." ⠀ ⠀ It's one of those things where, I need to choose to listen and wait for His response. I have to sit here and go, there are probably some really big truths and comfort that He wants to bring to my heart but I'm not stopping and listening.⠀ ⠀ I finished Leviticus today and He has spoken so deeply to my heart with that book. The book that I used to feel was “useless” and “boring.” I took that frustration of what our world is facing and asked Him to bring me peace and clarity, and friends if He can do that so powerfully in Leviticus... imagine what He can do that we miss because we aren’t intentionally looking and listening.⠀ ⠀ He is still victorious. Spring is still coming. He is still here. For more on this head to my bio to check out Episode 33 of the Chronically Cultivating Podcast.⠀ ⠀ #Heismoving #chronicallycultivating #livingthechronicillnesslife

“Then the Lord said to Moses, “Give Aaron and his sons the following instructions regarding the...”⠀ ‭‭Lev‬ ‭6:8-9‬⠀ ⠀⠀ So I was reading Leviticus 6, it’s all about further instructions, meaning that I have already read paragraphs about instructions for all of these offerings + am now reading more.⠀⠀ ⠀⠀ I started thinking about all these tedious jobs the priests had. ⠀ ⠀ That’s when it hit me. ⠀ ⠀ The ENTIRETY of their jobs were that they were called to worship God with their life + service. What they were called to do was so repetitious, so time consuming, + pretty much the same old, same old all the time. Even in those things that were so meticulous + repetitive, that's how they were called to worship. This got me thinking about chronic illnesses + how I've felt like my job right now, and the way that I'm meant to worship Jesus, is by taking care of my body.⠀⠀ ⠀⠀ Is that the way I want to worship God right now? Not really, but this is how He’s asked me to worship him right now.⠀⠀ ⠀⠀ This got me thinking about what our world is dealing with + what precautionary measures we need to be taking.⠀⠀ ⠀⠀ There are repetitious, vigilant measures + acts. It doesn't matter if I feel like following them or not, because this IS what I'm called to do: to take care of my body + those around me.⠀⠀ ⠀⠀ Right now you and I, in this country + in this world, are called to take care of ourselves + the people around us.⠀⠀ ⠀ Part of that is PRACTICING social distancing + sanitizing. Our quad came up with a plan to handle Jared coming home if he has to go out, how to disinfect packages, mail, and groceries, etc. ⠀⠀ ⠀⠀ There's SO many things! I know there are times that Jared and I haven’t wanted to do want to do all these extra steps BUT that’s what we're called to do right now.⠀ ⠀ This is our worship. We are glorifying Him by taking care of ourselves and others. I think it will change everything if you're able to look at facing this trying time + social distancing as a way to worship Him.⠀ ⠀ To hear more about this topic click the link in my bio to listen to the most recent episode of Chronically Cultivating!⠀ ⠀ #livingthechronicillnesslife ⠀ #cultivatinginquarantine

“The righteous care for the needs of their animals, but the kindest acts of the wicked are cruel.”⠀ ‭‭Proverbs‬ ‭12:10‬ ‭NIV‬‬⠀ ⠀ ⠀ As Foxy has been aging we know that our time with her is limited. When we got her yesterday, we deemed that we would do everything possible to treasure her time here with us and spoil her.⠀ ⠀ Foxy has NEVER been a cuddler. As she has aged she has been a little more cuddly, but now with the medications she is on she is very cuddly. Jared caught this picture of us when we both fell asleep and had a over 90 minute nap. That has never happened before.⠀ ⠀ Then I tried to get some work done so Jared was cuddling her and she wanted nothing to do with it, she went right back to my feet and wanted me, so we cuddled some more. I have gotten “nothing done” but I got to treasure moments I will carry with me for forever. I will happily choose to do “nothing” when the alternative is to spend my time cuddling her.⠀ ⠀ During this quarantine, it can be a lot to take having everyone home and together 24/7, but I encourage you to treasure these moments home. Life rarely gives us a chance to slow down let’s cultivate what matters during it.⠀ ⠀ How are you cultivating in quarantine?⠀ ⠀ #shibainu #cultivatinginquarantine #livingthechronicillnesslife

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