Skip to content

Living the Chronic Illness Life

Intentionally Living Spoon By Spoon

Hello
About
Living the Vow
- Our Story
- How to Love through a Chronic Illness
Blog
Chronically Cultivating
Shop
Spoonie Study
- About
- SS 2019: Cultivate
Foxy Film
Contact

About

RSD/CRPS Information

EDS Information

Dysautonomia Information

Instagram

“A cheerful heart is good medicine, but a broken spirit saps a person’s strength.”⠀ ‭‭Proverbs‬ ‭17:22‬ ‭NLT‬‬⠀ ⠀ A year ago today, we accessed my port for the first time. The port was placed on February 6, 2019, and was accessed on February 14, 2019. Jared and I don't really like valentines day (sorry it's just not our thing,) so the 14th has become a victorious day that we remember and celebrate God's faithfulness.⠀ ⠀ Now I know this may seem strange, especially because the port was not what we wanted. So why do we celebrate this? Well, we did and do because this was how God chose to answer our prayers for a way to be out of the hospital more. It wasn't the faithfulness we were anticipating, but it was the faithfulness we got. Sometimes God doesn't answer our prayers how we feel they should be answered, but just because things aren't the way we want them to be does not mean that God is not faithful or undeserving of our gratitude (considering we are undeserving of His grace, faithfulness, and love.)⠀ ⠀ We celebrated the day of my first access at home and my first infusion (yes there was confetti involved because I firmly believe that you can't celebrate without confetti.) Anyways, the post was met with some confusion and by looking back we can see why. When the day came to access my port for the first time, we had accepted that this was our reality. We chose to celebrate His faithfulness of receiving home care, and this was how we chose to cope with it.⠀ ⠀ Yes we were grateful, after waiting faithfully for God to open up the door for me to be at home more, but even though we asked for His will... this wasn't what we wanted. We shared the celebration publicly, but we hid the fear, anxiety, disappointment, and sadness over needing a central line.⠀ ⠀ I still don’t like my port, but God gives us the grace and strength we need to get through each day. If you find yourself receiving faithfulness in a way you didn’t expect (even though you don’t need my permission) I want you to know from my own experience, that you can still celebrate- even if the victory doesn’t look like what you thought it would. #celebrate #Godisfaithful #livingthechronicillnesslife

“The Lord is my strength and my song; he has given me victory. This is my God, and I will praise him— my father’s God, and I will exalt him!” ‭‭Exodus‬ ‭15:2‬ ‭NLT‬‬ . . . Getting a stair lift is a victory! We waited for a long time, I think hoping that I wouldn’t need it and that it was an expense we wouldn’t have to pay. Since Aug 2017, Jared has faithfully carried me up to our bedroom and down every single day . . . This freedom is not lost on us, we didn’t have it for SO long and we won’t ever forget these years. To wake up this morning and get up and ready on my own timing was mind blowing. I didn’t realize how much I missed that independence . . . The future is accessible, my friend. It is not easy to come by (or cheap) but this independence is priceless . . . PS I took the seat belt off for the pic- don’t worry y’all I’m being safe 😆 #Godisgood #thefutureisaccessible #livingthechronicillnesslife

The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. Lamentations 3:22-23⠀ ⠀ One year ago today, God showed His faithfulness in a way I hadn’t anticipated. That was through a plastic device placed in my chest. For a little over 10 months, we prayed that the Lord would bring about a way to decrease my time in the hospital and increase my time at home. I mean I would rather be be uncomfortable in my own home than to be uncomfortable at the hospital.⠀ ⠀ I think of the quote that has truly changed my life from one of @laracasey books where she talks about the phrase “She believed she couldn’t so He did.” I didn’t think I was going to make it through that port surgery. I didn’t think I would be able to handle a needle going into my chest every single week for 52 weeks straight and counting. I didn’t think that I could handle all the different things that this illness brings and I’m right. ⠀ ⠀ I couldn’t but God can.⠀ ⠀ He has given Jared and I all that we need to face each day. He has given us all the courage, all the strength, and all the support to go through this and you know what’s amazing about all of this? Is that I have not had to have a full hospital admission in 12 months. That’s amazing. I prayed for 10 months that God would allow me to be at home more and out of the hospital and He delivered by allowing me to receive care at home.⠀ ⠀ That freedom is life changing, and I know I’m not going to be able to stay out of the hospital for forever but I am so blessed that at this time in my life that is an option for me.⠀ ⠀ So today on my port-a-versary I am going to choose to be grateful for a better quality of life and more time at home despite all the hurt and frustration. If you are struggling today, know that God will give you all you need to get through things He has asked you to walk through, one day at a time, because His faithfulness is greater than our fears.⠀ ⠀ #portaversary #chronicallycultivating #livingthechronicillnesslife

“Whatever is good and perfect is a gift coming down to us from God our Father, who created all the lights in the heavens. He never changes or casts a shifting shadow.”⠀ ‭‭James‬ ‭1:17‬ ‭NLT‬‬⠀ ⠀ ⠀ Every day is a gift. Days like today are easy for me to see that! Getting sister time is so life giving. I love my sisters so much and treasure the time I get with them (especially when they have such crazy schedules.) ⠀ ⠀ These past few days I have been tackling my days hour by hour. It has not been desirable or easy. During these times I find myself challenged to see God’s “gift” in this present life. By His grace I made it through to this weekend and put my phone down to cherish what was in front of me- my wonderful siblings.⠀ ⠀ ⠀ Having siblings who have worked hard to understand my challenges and celebrate life along side me is something I try hard to not take for granted.⠀ ⠀ ⠀ This life we have is a gift, yes there are days where it doesn’t feel like it (for freakin’ sure) but capturing these good moments help me remember all the blessings of this life.⠀ ⠀ Having these photos doesn’t necessarily “fix” the pain for make it better, but it does remind me that there are good days in between. Little life giving “gifts” He gives me along the way.⠀ ⠀ #sisters #gratitude #livingthechronicillnesslife

Those who plant in tears will harvest with shouts of joy Psalm 126:5⠀ ⠀ This past week, I had the pleasure of introducing you to my mentor in the most recent Chronically Cultivating episode! We talked about her LIFE CHANGING philosophy on joy. ⠀ ⠀ “And I used to pray this prayer every morning, ‘God you got me into this and You’re going to get me through it.’ I began to think about joy as I didn’t have any. So I began to ask God to fill me with His joy because I had this gaping hole inside of me. Everything was gone, Bob eventually didn’t even know who I was, or my name, I was just ‘the nice lady who took care of him’ (I was grateful he called me a nice lady) but it was like I was standing at the crossroads and I had a choice.⠀ ⠀ I could be angry, bitter, and self centered but I made a choice, in that moment, that I was not-and would not- become a bitter woman. So again I asked God to fill me with more of Himself and then I began to think of Joyful and then joy filled and what the difference is.⠀ ⠀ The huge difference is that joy-full depends on me (and I had every reason at that moment not have any joy) but I didn’t want to live without joy, so I asked God to fill me and then it just changed my world....”⠀ ⠀ ⠀ To hear more of this amazing philosophy that has literally allowed me to understand joy in a way I never have before click the link in my bio that says, latest Chronically Cultivating podcast to head straight to Episode 32!⠀ ⠀ #choosejoy #chronicallycultivating #livingthechronicillnesslife

“When Gideon came to the Jordan, he and the three hundred men who were with him crossed over, exhausted but still in pursuit.”⠀ ‭‭Judges‬ ‭8:4‬ ‭NKJV⠀ ⠀ This weekend has been such a blessing yet at the same time exhausting. There is something so special about being in a room where everyone attending is in ministry being refreshed and encouraged. Burn out in ministry is real, so to have a conference dedicated to refreshing those who pour into others (no matter how big or how small the ministry) is invaluable.⠀ ⠀ Last year I came to this conference and wasn’t sure that I really had a place. I wasn’t officially in leadership but had a heart for it, little did I know that after that weekend God would be preparing me to actually move into women’s ministry. My amazing mentor, who you will meet in episode 32 of the Chronically Cultivating podcast, was the keynote speaker last year and that is how we met. I prayed for almost two years prior to January 2019 to meet a woman that had experience in women’s ministry and went to my church...and I found her at a conference I didn’t expect to be at and for a ministry I didn’t come to find yet. Now with only one session left tomorrow, I am exhausted but still ready to pursue God’s heart and truth to serve others well.⠀ ⠀ This year I wasn’t even sure I was going to be able to attend due to all that has unexpectedly become my new normal. I left it in God’s hands and knew that if I was meant to be here, He would make a way. With lots of rest breaks and times upside, I am here. Learning and growing from seasoned women with passionate hearts for ministry.⠀ ⠀ Thank you Maggie @maggiewallemrowe and By Design Ministries @bydesignministries for a fantastic weekend! Now I am going to rest up for the final session tomorrow ⠀ ⠀ ⠀ #exhaustedbutblessed #retreat #livingthechronicillnesslife ⠀

The Lord says, “I will guide you along the best pathway for your life. I will advise you and watch over you.” Psalm 32:8⠀ ⠀ People sometimes like to assume that I am positive all the time or that I have adjusted easily, and that’s just not true. Everyday I am figuring out my new normal, and each day I lay it at God’s feet. This prayer has been said when my cheeks hurt from smiling to where my tears are streaming down my face in sorrow.⠀ ⠀ Lately I have had an even newer normal than I would have liked. That’s part of the reality of EDS and many chronic illnesses, we don’t get any warning... life, personally my collagen, just happens. For the past four months, I have said this prayer far more often than once a day and often while allowing myself to process all that is going on- good and bad⠀ ⠀ If I am truly going to learn how to best maintain myself so that I can do what God has called me to do, this has to be my prayer. His will over mine. As I head into a retreat this weekend, this is again my prayer. All that matters is that you invite God into wherever you are. I promise He will show up to your invitation⠀ ⠀ Want to hear more about this? Well I go really in depth to how my life has changed. Check out the Blog Post or the Chronically Cultivating Episode 3 ⠀ #dailydevotional #prayer #livingthechronicillnesslife

“A man of many companions may come to ruin, but there is a friend who sticks closer than a brother (sister)” Proverbs 18:24 . . . I don’t know what I would do without this amazing woman. Being neighbors has been the greatest blessing.... EVER . . . Whether we are just watching tv, organizing medical crap, wedding planning, shopping, preparing for book club, goal setting, or cackling at... well... everything 🤣 I cherish our Monday nights and all the other spontaneous visits . . . Thank you for always helping solve problems and allowing me to be your friend with benefits (if you don’t know what I’m talking about check out episode #20 on the Chronically Cultivating podcast) . . . See you Monday and probably text you in 5 minutes 🤣 . . . #bestfriends #twinkies #livingthechronicillnesslife

“The Lord will fight for you; you need only to be still.” Exodus 14:14⠀ .⠀ .⠀ .⠀ ⠀ You know those days. Those days when your judgement seems clouded and you’ve lost control. Those days when nothing goes right and you’re body fights you… and you don’t even know how to fight it or even start to beat it. Well today is one of those days. One of those days where you don’t know whether to scream, cry, or panic so you don’t do anything of those and just sit in silence. Today is one of those days⠀ .⠀ .⠀ .⠀ ⠀ I know not all days will be like this one. I know that tomorrow is a new day, a new chance for growth, progress, patience, and well being. I know that how I am feeling will pass, and that tomorrow I will shake this off and get my butt in gear. Today is just not that day- and that is okay. If you are having one of those days- that’s okay⠀ .⠀ .⠀ .⠀ ⠀ Chronic illnesses test us and those around us in many different ways, this is one of those ways. This is the reality of having a chronic illness. It’s not an everyday reality, it’s not the universal reality, but it is one of the many aspects of dealing with or loving someone with a chronic illness. Do I know for sure that tomorrow will be better- no, but I do know that tomorrow is a fresh start. I brand new opportunity to practice patience and to refrain from self pity and bickering with your loved one. This life is hard, but we have to use that spare spoon in our back pocket on days like today, that’s what it’s there for⠀ .⠀ .⠀ .⠀ ⠀ What I have learned about days like today is that sometimes God is even more present than I could have imagined when I welcome Him into the brokenness. I used to feel like I needed to “leave Him out of these days” or that even if I invited Him in “He wouldn’t want to be apart of it.” Thank goodness that’s not true. He has always stepped into my hurt and gave me peace to stay still. If today isn’t your day that’s okay, fighting sometimes looks like being still, because we know that He is fighting for us. Take today for what it is, He won’t let it go to waste⠀ .⠀ .⠀ .⠀ ⠀ ⠀ #dailydevotional #bestill #livingthechronicillnesslife⠀ ⠀ ⠀

“For I have given REST to the weary and JOY to the sorrowing.” Jeremiah‬ ‭31:25‬ ‭NLT‬‬⠀ .⠀ .⠀ .⠀ ⠀ Today God gave me REST through the JOY of Foxy. She cuddled (with no force on my part at all) for 35 minutes... 35 MINUTES FRIENDS!!!! This is a huge achievement, and the greatest blessing. Even though the fact that she sleeps with her eyes open 60% of the time still freaks me out lol⠀ .⠀ .⠀ .⠀ ⠀ These frequent full dislocations are killing me. But I am so grateful for all those who have been able to help me out while Jared is working. A special thank you to my mom who has spent the day with me and brought Foxy (and is still proving that even when I nap she will always be my “Instagram photographer.”) ⠀ .⠀ .⠀ .⠀ Just because those with EDS have dislocations and subluxations all the time does NOT mean that we don’t need to rest and heal after each one (especially a full one) so if you are like me on the couch, allowing your body to heal, but sick of resting, try to hold onto the hope that His joy will shine through in our lives when look for the rays... and who knows it might come in dog cuddles 🐾☀️🌈⠀ .⠀ .⠀ .⠀ ⠀ #rest #heal #livingthechronicillnesslife

“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” James 1:12⠀ .⠀ .⠀ .⠀ ⠀ Every setback prepares you for your comeback, but man, it is hard to come-back again, and again, and again. We do not always get to decide when our success comes, and no matter how hard we try there will be setbacks⠀ .⠀ .⠀ .⠀ ⠀ If I could talk to my younger self, after being setback, here is what I would say:⠀ .⠀ ⠀ 1. Allow yourself to be upset, you can not move on from something you have not processed⠀ .⠀ ⠀ 2. Take a small breath or break before jumping back up. This small breath can be as long as you need: a day, a week, a month- it does not matter! You define your break. What matters is that you are mentally ready to get back up⠀ .⠀ ⠀ 3. Plan. Make a plan before you jump up to put out fires or you will risk burning out. The best plans are SMART plans (if you don’t already use this planning strategy you should google it- it will change your life!)⠀ .⠀ ⠀ 4. Know that plans change and be open to that change⠀ .⠀ ⠀ 5. Keep on hustlin’ because you will find success even if you get to Plan Z and it does not turn out the way you planned- you will get there and start Plan AA. Trust me. If I can- you can⠀ .⠀ .⠀ .⠀ ⠀ #comeback #comebackqueen #livingthechronicillnesslife

“Love bears all things, believes all things, hopes all things, endures all things.” 1 Corinthians 13:7⠀ ⠀ ⠀ ⠀ So grateful to get away and spend some time with family this weekend 💛⠀ ⠀ ⠀ #familyinlove #secondchristmas #livingthechronicillnesslife Update: Cassie had a knee dislocation this mid-evening it has been reduced since getting home. Prayers would be appreciated

“I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid.” John 14:27⠀ ⠀ ⠀ .⠀ .⠀ .⠀ ⠀ Some seasons are slow and sluggish where it feels like I’m never going to move past where I am and then there are others that are bold and bright and busy and they just fly by⠀ ⠀ ⠀ .⠀ .⠀ .⠀ ⠀ ⠀ Having a full schedule made me feel so full and accomplished and successful but where do you go from there when you don’t have that busy full schedule anymore? Is life over? Do you not matter as much? Are you less than?⠀ ⠀ ⠀ .⠀ .⠀ .⠀ ⠀ ⠀ These are all questions I have asked myself over the past 10 years. What I have learned is that He designed a full life for all of us, even those of us with a broken body. It may not be “full” of even remotely the same things as before, but in that I realized that in this life and new season I have more time for Him and when He is the center my life is full⠀ ⠀ ⠀ .⠀ .⠀ .⠀ ⠀ So no matter what season you are in (whether you chose it or not) I hope you make this a season of growth⠀ ⠀ ⠀ .⠀ .⠀ .⠀ ⠀ ⠀ If you want to hear more about this head to the Chronically Cultivating Podcast Episode 3: you don’t need a full schedule to live a full life⠀ ⠀ ⠀ ⠀ .⠀ .⠀ .⠀ ⠀ #growth #chronicallycultivating #livingthechronicillnesslife⠀

So I want to let you in on a little secret.... I didn’t have my #powersheets or January tending list ready on the 1st . . . I could have just given up and decided that because it wasn’t done on the first that I should just try again next year, but that would be so WASTEFUL! This year for the first time I truly came to understand the truth that Cultivate preaches which is that there is NOTHING magical about January 1st. It’s just the first day of the year, but what matters is how I spend the whole year collectively not just the first! . . . I want to give you an inside look at my powersheets, my word of the year, 2020 goals, and I even show you how I set up one of my action pages. So check it out! Link is in my bio under latest blog post!! . . . Don’t have you powersheets yet? Well use the code HAPPYNEWYEAR to get 15% off a set of your own 2020 powersheets- it’s not too late! But warned though, once they sell out of the 1 year powersheets they will not be restocked for the year . . . #2020goals #cultivatewhatmatters #livingthechronicillnesslife

|| I pray that the eyes of your heart may be enlightened in order that you may know the hope to which He has called you, the riches of His glorious inheritance in His holy people. Ephesians 1:18 || . . . For the first time in 13ish years, I got a new Bible. My former Bible has been cherished, but there are so many highlights and notes I can’t add anymore, that was when I knew it was time . . . For months I researched what Bible I wanted and fell in love with this NLT Journaling Bible. I am trying out using highlighters as a color coding system (but nothing crazy intense I am doing it in a very simple way- baby steps!) I asked my dad to dedicate my Bible to me, and after He, Jared, and my Mom all prayed over my Bible. More than that though they prayed that my heart and ears would be open to all He has to say to me, to teach me, and to grow me. It was easily one of the most sacred experiences I have ever had and I will always cherish it- I am so blessed to have them in my life and willing to pray over me and my transition into ministry . . . I have never read the Bible in a year in a canonical fashion (yes that’s a real word I only learned it recently and it means reading from front to back, not chronologically which is reading the Bible in historical order.) I am excited to listen to Him and take notes on everything (if you want to see my plan for the year you can find it in my story or the Bible Study highlight) . . . How can I pray for you in this new year? Please drop a comment below and if you want prayer over something you don’t want everyone to see feel free to DM me for it to be kept private . 🙏🏻 #newbible #bibleinayear #livingthechronicillnesslife . 💛 Also the Bible tabs are from @cultivatewhatmatters and they are BEAUTIFUL. you can find the link to their shop (with 25% off today) in my bio!

Happy New Year! 🎉 Today’s victory was standing (thanks to my lovely husband for supporting me) to get this photo/video 🎉 Let this be a year of growth and joy! 🎉 #2020 #happynewyear #livingthechronicillnesslife

2019 has held so much good while definitely challenging, God has proven to be so faithful. It was hard to pick out only 9 of my favorite memories so here they are in NO specific order. Please SWIPE right to see my little snippets from each memory ✨ . #thanks2019 #cheersto2020 #livingthechronicillnesslife . PS: saying today has not been a good day would be the biggest understatement ever. Because of this I ask for your prayers as we navigate some unexpected uncertainty and unforeseen pain in regards to my health. Thank you for respecting the privacy of myself and my family during this time.

|| Always be joyful. Never stop praying. Be thankful IN all circumstances, for this is God’s will for you who belong to Christ Jesus . 1 Thessalonians 5:16–18 || Recovery in any capacity is never easy and definitely is NOT all smiles, but having my brother here while Jared is at work for a couple days is such a blessing and a joy . Many Christians like to use 1 Thessalonians 5:16-18 to encourage others, normally with very good intentions, while unknowingly using it as a positivity prescription or a quick fix to our struggles. Sometimes even the best intentions can become invalidating. This verse used to confuse me and made wonder if even God was invalidating me. Friends thankfully that is not even close to the truth . He understands EVERYTHING. I have been reading through the New Testament, and am in awe of just how much He went through while He was on earth and all He understands . These verses speak to the balance of joy and pain. He doesn’t say we need to be joyful and steady in prayer FOR all circumstances but IN all circumstances. Whether we are in the highs or the lows of life we need to choose joy, pray just as hard in the good and bad, and be thankful IN the circumstances He has asked us to experience . We don’t know what the results will be from yesterday. I am scared but I also know that it’s out of my hands and into His, which is the best place for any uncertainty to be . And I am so grateful that while Jared is working Stephen is able to be here with me. Disney+ has served us well today and probably will tomorrow as well. Stephen even did my devotional time with me this morning when I couldn’t write #siblinggoals Recovery from the multiple dislocations that happened from the testing today will be rough but this new shoulder ice/compression brace is a godsend and I haven’t had any tv headaches today with my new #meetsun blue light blocking glasses . #recovery #brothersisterlove #livingthechronicillnesslife

Find Us on YouTube

Stay Connected

Stay Connected

Thanks for putting us in the top 100 Chronic Illness Blogs!

Instagram
Facebook
YouTube
Facebook
Off Season Training
Instagram