The Inconveniences

The past two weeks, the toilet in our master bathroom has been running non-stop. We considered this a minor issue and got used to readjusting the flapper in the tank, turning on and off water, and making things work. Yesterday we decided it was time to replace a couple parts, so Ben ran to our local hardware store and purchased what we needed. He strategically found a time in our schedule where he could take off the tank, do a quick installation, and get things running again.

We promptly discovered that our toilet was not a standard size and our store did not carry our particular replacements. Ben and a friend had dismantled it and were not able to put it back together with the worn out pieces. We were going to need to do some research and find the replacement parts if we were doing this ourselves, which meant an evening without use of that bathroom.

A minor inconvenience for a household with more than one toilet.

Without a toilet on the main floor, I needed to use stairs to get to the restroom. Stairs are difficult for me to use even on my best health days so by my second bathroom visit I was winded. Ben helped me get back to My Spot on the Couch and I felt a wave of panic. My diuretic was doing its job and getting rid of excess water quickly–way to go, medication!–but that meant there was another trip in my future. My mind was racing: What happens the next time I need to pee? Can I make another flight of stairs? Do I need to find a bucket?!

One of the most challenging realizations I have had to accept in this season is that my inconveniences more quickly evolve into problems.

In other times of my life, when I was feeling and functioning better, I was quick to point out that mild annoyances were not worth my worry or emotional energy. I was taught “don’t sweat the small stuff” and liked to be self-sufficient. For much of my life, I had the time and ability to clean up and move on from issues of any size. And I encouraged others to do the same.

For many of our friends living with chronic illness, there are common issues that quickly escalate due to a person’s physical, mental, and emotional limitations. Not everyone has the dexterity to fix the broken thing, the mental capacity to think thru all the options, or the energy to do the research. Our culture can overlook and water down hard things, believing that “small stuff” is a one-size-fits-all description. But for some of the people we love, the caregivers and the care-receivers we are doing life with, there is NO small stuff. Every challenge is a difficult hurdle and will take a lot of effort.

I am lucky to have Ben. He sat with me and helped me calm down before we put together a plan. We ended up taking all my necessary stuff downstairs to sleep in the basement, close to a working toilet, and Ben called a plumber to come in the morning. (Thank you, Blue Dot Services!) Yes, we had to pay a literal price for a problem that most people could fix on their own, but we are learning how to accept help of all kinds. As of this afternoon, I am back on the couch and grateful for a new toilet tank with standard parts.

Friends, I apologize for any time I tried to minimize your hard things or looked past your problem. Your stuff is not small. Your challenges deserve to be recognized. May we all walk forward together with a little more grace for ourselves and each other–especially when it comes to toilets.

The Cruisin’

A few weeks ago I celebrated a major accomplishment: I drove our car to the grocery store. It was the first time in over a year that I felt well enough to get behind the wheel of a vehicle and the few minutes on the road between our house and Dillon’s were freeing. A wonderful reminder that I can still function in ways I used to.

This has been a strange season. (Understatement of the century?) As we continue to navigate the COVID pandemic and confront the systemic ills of our world, I recognize we as a global community have a lot to process and progress in. The same is true of my own life.

Last week Ben and I met with my heart team to talk about my overall health.

[PSA: Our medical teams–doctors, pharmacists, receptionists, valets, everyone in our medical facilities–are incredible and worth our respect and admiration. God bless them and the work they continue to do in such a hard season!]

After my check-up, Dr. K pulled his chair a little closer to us and asked, “Where do you want to start?” He explained the good news first: my heart is stable. The past six months we have not seen any further digression of my heart functionality. Praise God! We took that news well and I was thrilled that I don’t have to schedule a right heart cath in the next few months.

His smile softened a little as he continued. He explained that many patients my age get angry with this news. I was a little confused, “But this sounds like a good thing to me…” Dr. K went on to tell us that from a medical standpoint it IS good news because it means I get to use my own heart longer. But from the personal experience of many patients, this becomes a prolonged season of feeling and functioning poorly. I am not sick enough for immediate intervention but I am not well enough to work, to get out of the house easily, to have much energy day-to-day. This is what is often referred to as being “in limbo”. And for me, this season of limbo could last for years.

. . .

Ben and I have been processing this neutral news, holding the tension of both sides of my new reality. We are relieved that I don’t have to start thinking about a heart transplant right now (especially since I am more than halfway through my master’s program! Shoutout to MLC4!). But we are also disappointed that my immediate future does not look more promising. In the world of CHF it requires a miracle to see true improvement. And while we pray for God’s miraculous intervention, we also choose to live into each day as it is.

In a moment of wisdom, I decided to reach out to the heart transplant Facebook group that I am a part of and ask if other people have found themselves in this place. I heard back from over a dozen people–some who have been transplanted and others who are anticipating intervention in the future. They shared their stories, their advice, and their prayers. One lady mentioned that her husband has been waiting over a decade to be listed. While she shared the pain of ten years of him living with little energy and ability, she also shared her hope. She mentioned that they call this time of limbo “cruisin” as the two of them keep on.

Cruisin’. Moving slowly but moving forward. It is not the most exciting way to travel and it does not have a defined destination with a predicted ETA. But it allows you to notice what is around you and call out to friends and play music really loud. (Soundtrack can include Smokey Robinson’s classic hit and–my personal favorite–“Shotgun” by George Ezra.)

So we are cruisin’. We pray and anticipate there will be more times when I feel well enough to be in the driver’s seat. You are welcome to join us.

The Lie of “OK”

Yesterday was my first in-person doctor’s appointment since February. I typically see my pre-transplant team every month so it felt like a kind of homecoming for Ben and I to walk through their (surprisingly difficult to open) office doors after weeks away. Ty, Julie, and Vanessa greeted us as they took bloodwork, asked questions, and started the monumental task of scheduling upcoming tests. All the staff are more than our medical team–these people have become Our People.

Which is why when Dr. E came in and asked me how I was doing he did not immediately respond to the line that I so easily gave:

“I’m doing OK.”

Have you ever had a doctor stare you down? It’s frightening. And in my case totally called for.

“Caitlin, from everything I know about you and how the last few months have gone I have a hard time believing that. How are you actually doing?”

I am not OK.

“I’m OK” has somehow become my default answer to people’s questions about my wellbeing. And I know I am not the only one who is stuck in this. We as North American adults have been taught to reply with only positive responses when someone inquires about us, especially individuals we are not as familiar with. It is somehow considered impolite to share our hurt feelings or ask someone to recognize our crummy day, so the correct reply must be tied to “OK”. As in, “I am somewhere between painfully horrible and having the best day of my life.” It is easy to both step into and walk away from a conversation with that much ambiguity.

But the vagueness of “OK”, meant as the catch-all of emotion, is actually a lie I tell. To my cashiers. To my friends. To myself. As someone with limited physical, emotional, and mental energy (which, quite frankly, is ALL of us in this season) I am constantly tempted to lie about my wellbeing because it requires less effort. I don’t need to think about the day’s events, I don’t need to worry about having an emotion-filled response, I don’t need to get into a long-winded conversation. “OK” assures I can preserve my much-needed energy. And that is a good thing…right?

I have decided that in my life honesty is more important than preserving my energy. Sharing my reality allows me and my community to carry things together. It is really difficult to hold “OK” with someone. In a strange and paradoxical way, it is less complicated to acknowledge true emotions–even those that are heavy–and tell people the real story. They can respond however they see fit, I am not in control of that. I am in charge of inviting or excluding my community into my life and sharing the truth about me.

I decided Dr. E should be included, so I told him the truth: “I am not OK.”

I am fatigued and rarely get out of bed before ten o’clock. I am anxious about exposure to COVID for myself and people worldwide. I am struggling with brain fog and digesting meals and wanting to smash my computer screen as I scroll down conflicting stories that all lack compassion for people. I am thankful for great generosity and love. I am experiencing peace in my conversations with God. I am simultaneously hopeful and deflated.

Friends, Our People are not accepting “OK”. And you shouldn’t either. Now is a great time to not be OK. Be better. Be worse. But don’t settle for the lie we are conditioned to give. I invite you into the stretching space of honesty, the place where your real self exists, and know Your People are there to carry it all with you.

The Quarantine

I am not an expert on many things, but there is one area I feel I can share my guidance in this season: Quarantine.


Due to the nature of my heart issues, I have been in self-quarantine on and off in different times. I have been almost completely isolated since the beginning of this year due to rampant flu/virus issues. As you may be someone needing to join me in staying home this season, I want to share advice on how to make this difficult change a little easier:

1. Ask for help. This is the most challenging and most important step. If you are unable to get out, ask someone to do it for you. My community has delivered groceries to my front door, returned my library books, picked up my medications, and a myriad of other crazy tasks. The people in your life WANT to help you–even if they are not going to physically see you! (Don’t have anyone you feel like you can ask? Send me a message.)

2. Open the windows. Sunlight and fresh air are vital when you are inside all the time.

3. Move. It can be tempting to sit on the couch all day but your body will not be pleased with that decision. There are lots of ways to stretch your body and fun workout videos to try from yoga to kickboxing to different kinds of dance. If that is not your energy level, set an alarm to take a lap around the living room every thirty minutes.

4. Create something. Paint, sculpt, journal, cook, draw, sew, blog–there are so many venues to be creative. (If you need supplies, refer to point #1.)

5. Start something that you can finish. If you are like me it is important to accomplish something during this time at home–and don’t just make it house cleaning! Try lessons on Duolingo, put together a jigsaw puzzle, organize a forgotten desk drawer.

6. Spend time with someone you love. (Sometimes it gets hard sharing close quarters so you may need to prioritize fun!) My husband and I make time to play games and watch movies together. My parents Skype with us every week. If you live alone, call or FaceTime a person who gives you joy.

7. Pray. There are times when things seem too quiet or too overwhelming–and in both of those we need to stop and breathe. Talk to God, meditate, practice mindfulness. We are in an unusual season where we are given permission to slow down and look around. Take those moments seriously and find strength and peace as you connect with God.


Sending love and peace to you, friends. We can do this.

The Gifts

I woke up late this Christmas morning, staggered to our couch with a protein shake breakfast, looked at my husband across the room and began to weep. I was completely overwhelmed. I was not crying tears of hardship or frustration, I was crying tears of joy. Complete unfiltered joy.

This year has been a very difficult one for a number of reasons. My family almost died in a horrible car crash while driving out to visit us and my parents were badly injured. My heart health continued to bring its own challenges and I had more bad days than good. Our city, country, and world saw incredible struggles and strife.

But instead of being overwhelmed by anger or sorrow, I feel joy.
“Why?” I wondered out loud. “How can I feel so full at the end of such a draining year?”


Because we have received good gifts every step of the way.

“Which of you, if your son asks for bread, will give him a stone? 10 Or if he asks for a fish, will give him a snake? 11 If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!12 So in everything, do to others what you would have them do to you, for this sums up the Law and the Prophets. (Matthew 7:9-12, NIV)

This passage of Scripture befuddled me for much of my college career. Whenever we studied Jesus’s Sermon on the Mount, found in Matthew chapters 5 through 7, I always found these verses kind of…random. Parents giving their children rocks and snakes? That sounds like stuff I would have loved when I was little! What kids are asking for bread and fish? (During this time I also learned importance of not trying to interpret every passage into today’s culture.) It took me years to understand the significance of this text and the truth that it contains: God gives Good Gifts. When God’s children ask for good things, God does not respond with a curse. Even when God does not respond how we hoped, God is not trying to trick us or punish us. God is love.

I need to pay attention to what I am giving God credit for; sometimes I point at trash and attribute it to the greatest Gift-giver of all! When horrible things happen it is not God responding to my requests with venom. Ugly things are the result of evil at work. My heart condition is not a “blessing in disguise” but an attack against the goodness of God. Car accidents and political fights and racism is not, and should never be, connected to our Good God. God responds to us in love and gives us (as undeserving as we are) Good Gifts.

Many times this year I have reached out to God for help. I asked for bread and fish, for our daily needs. I asked for comfort and peace. I asked for familiarity and support. And God responded with Good Gifts:

  • A HOME. Ben and I purchased a beautiful house with the help of our supportive family and a great realtor. (Thanks, Tyler!)
  • ASSISTANCE. People gave rides, meals, and lots of time and patience on days I needed physical help. My IANA Team has been an incredible blessing.
  • THERAPY. We set aside money in our budget for monthly counseling sessions. Talking with a professional about my mental and physical health has been a gift.
  • SEMINARY. One of the most unexpected answers to my pleas for help was in the form of a learning community. It has been a great start to a three-year journey of reading, writing, and sharing.
  • PRESENTS. Some of the good gifts I unwrapped this year were literal presents: Candy from our neighbors, flowers from our church family, even a Gilmore Girls themed package from a dear friend.
  • HEALING. My parents and my brother are alive and recovering from their injuries. Their lives are the most important gift I can celebrate this year.
  • LOVE. In and through all this year has brought, Ben and I have received love. An overwhelming amount of love from people in our community, people we barely know, and a God who knows and loves us all.

I have been given Good Gifts this year so I thank God with praise and wonder and weeping. And I thank all of you, too.

May you be overwhelmed by Good Gifts in this new year.

The Anxiety

I cried in the doctor’s office today.

Again.

I have been wheezing and coughing and dealing with stomach cramps for the past few days and, with the sound advice of my husband, decided to contact my GP. Their office has been amazing when it comes to making last-minute appointments and giving me the time I need when I am there. They are friendly and helpful and treat me like a person. I am really grateful to be connected to their clinic!

That is a rabbit trail that, although lovely, is not the point of this post. Back to the story at hand…

After my doctor heard my side of the week and did her own analysis, she told me she wanted to run a test for the Flu. Not anything crazy, just a cotton swab and a few minutes of waiting for results. A quick painless test and ten minutes of talking to Ben while we try to decipher medical posters on the wall. No big deal.

Right? No big deal?

I started crying the minute my nurse walked into the room. Ben jumped up and grabbed my hand and my sweet medical team member pulled out a tissue. “Oh no! It’s alright!” She told me. “I promise this won’t hurt much it will be over very soon.” After a few minutes of tears paired with coughing and “I’m so sorry”s, I was finally breathing well enough to let her stick the swab up my nose.

After the nurse stepped out with my mucus sample and my husband gave me a hug and I coughed up some more phlegm I had to ask myself the question:

WHAT JUST HAPPENED?!

The past few years I have had intense anxiety attached to anything and everything related to my health. I have ugly cried before every procedure and in multiple medical visits. I had a full-blown panic attack on the ER gurney while they were trying to find a vein for a blood draw. I shed hot, silent tears on the ride home after I was deemed unwell enough for cardiac rehab. I put off taking a new medication for days because I had (perhaps unwisely) further researched some of the potential side effects. As someone who has always been a bit of a worry-wart, my heart issues have accelerated that anxiety and created a whole new stress-filled beast!

I have heard that dealing with chronic illness is often connected with developing or worsening anxiety. People with physical health issues (and those caring for them) are more aware of what is happening in their body and can feel completely out-of-control in regards to status and symptoms. Being sick is terribly stressful.

My medical team knows that I am dealing with anxiety and they have worked well with me in moments of fears and worry. A few times they have been willing to give me a moment to emote without them present and a few times they have been able to come up with a different way of getting data. Every once in a while there is nothing any of us can do except move forward. No one has ever made fun of me for weeping as they wheel me to the cath lab. They, perhaps more than anyone else, understand how difficult this is. After all, they are the ones prescribing the scary procedures and bringing the stressful news!

. . .

[Inhale. Exhale.]

. . .

With the help of my amazing therapist and loving support system, I have been able to recognize what is triggering my worry and stress in certain situations. Sometimes clarity comes days or months later. Sometimes I only find certain pieces of truth. Sometimes, like today, I am able to speak it in the moment.

“I am angry.” I told my husband, still holding my hand. “I am angry that I feel sick most days. And I realize it is not my fault. I feel helpless and that makes me sad and worried and angry. If I have the flu, it is just one more thing I have to try to work through on top of everything else.”

And you know what? I stopped crying. For a few moments I was able to identify my emotions, put into words what was bothering me, and breathe.

I don’t have the flu. (Unfortunately, I have a kidney infection and the start of bronchitis–which might be worse.) But I do have anxiety. And I have people who are helping me move forward in all of it.

Happy Mental Health Awareness Month. May we all move forward together.

The Advice: Rest

“I just need to push through this morning and then I can relax this afternoon.” – Caitlin Friesen, most days

“They won’t be able to do it without me.” – Caitlin Friesen, most days

“I need to keep my commitment otherwise I am not a good [employee, friend, wife, family member].” – Caitlin Friesen, most days

“Yes, my blood pressure is low and Yes, I am feeling terrible. But isn’t it vitally important that I drive to Target to pick up laundry detergent? We only have enough for three loads.” – Caitlin Friesen, just once (thankfully)

As much as I love her, sometimes Caitlin Friesen is dumb. Which is why being her can sometimes be difficult.

Through the past five years of varying appointments, procedures, and phone calls I am always given the same advice from my medical team: Rest. “Take it easy!” one doctor told me a few days before our week-long Vacation Bible School started. “Stay on the couch with your feet up,” said my ER nurse after I told her how much I was enjoying the autumn weather. My cardiologist told me I had to repeat back her instructions to “Rest. At. Home.” during our weekly phone call with my vitals update.

I just don’t rest well.

That doesn’t mean I can’t take a good, hour-long nap in the sunshine. Grandma taught me early on how wonderful it is to curl up on the sofa and take an afternoon siesta. I enjoy reading books and pick up a new selection from the Library every other week. Ben and I watch an episode of a new show most nights. (Who am I kidding? We watch The Office for the 28th round.) But even with those helpful habits, I have discovered it is not enough.

True rest for my body means more than sitting down somewhere. I have become a professional multitasker on the couch: I set an alarm so I only nap for the 20 minutes in-between events. I set my book down to respond to texts. I balance our budget while we watch Netflix. This is especially easy to do when you already know what is about to happen in the episode. Although I do look up from my laptop every round when Angela’s cat falls through the ceiling during the Fire Drill. “Save Bandit!”

[Opens a new tab to watch the opening of Season 5: Episode 13. Classic!]

Ok, let me stop proving how much I multitask as I write about how I need to stop multitasking.

I recently connected with an amazing therapist in my city. She is helping me navigate the complicated reality of chronic illness and working with me to create better habits. During our counseling sessions I explained how I was tired, had worsening symptoms, was worrying excessively. Being the gracious woman she is, she talked through and held those feelings with me. But she didn’t let me off the hook.

“What did your doctors tell you to do about your fatigue? Heart palpitations? Anxiety?” She did not ask, “Did they tell you what to do?” because she knew they had. And she already knew the answer. That I am supposed to rest.

I realized it was not just the professionals in my life who were giving me this advice. My husband checks in on me every morning from work to see how well I slept. My family and friends call before a meet-up to see if we should make other arrangements. My boss used to ask me to go home when it was clear I should not be working. And none of them are offended when I have to spend the day on the couch instead of Being Productive.

So why can’t I? Because I feel like there is so much more that I should be doing. I worry that because things can be done without me it means that I no longer have purpose or value. I feel like when I lay on the couch I am no longer an asset. I have bought the lie that if I push through now I can recover later. But my body is not able to recover like it used to. My body is in the long process of recovery and every time I “just suck it up and do it” I am actually interfering with my healing.

A few years ago I preached a sermon on rest. (I believe we do our best teaching with the subjects we have not mastered.) At the time I had no idea that my functionality was about to fall; that I was walking into a season where I wouldn’t have the energy and ability to work at the place and with the people I loved so dearly. In my Scripture studies I saw over and over that Jesus took intentional time to rest. If the God of the Universe needs to stop and rest, how much more do I?

And how much more do you. Whether you are a person struggling with chronic illness or a person with a healthy body and mind, we all need rest. And we need it now.

Today I give us all permission to stop and rest. If you are tired, sleep. If you can’t shake a thought, read. If you are anxious about your finances, watch tv…and resist the urge to bring a calculator. Stop believing that you are supposed to push through and recover later. Rest is a gift you can receive for yourself. Now.

It has been and will continue to be a struggle for me to rest. I am getting better at listening to my body and mind and responding to its need to lie down. I am finding ways to pass the time indoors and without a checklist of to-dos. I am realizing my friends are not offended when I call to cancel our plans. Because the most productive thing I can do with my time and energy is allow my body to heal.

The Travel

I should be packing my suitcase right now. One of my Favorite People is getting married in a much-anticipated celebration on the Central California coast this Saturday. My husband has a New Pastor’s Orientation just a few hours down the beach starting the next day. It has been cold and windy and grey for months and I could desperately use the sunshine.

Instead, I am sitting on my couch. Because right now I am not well enough to trek 1300 miles.

Perhaps the greatest struggle I have in this season navigating Congestive Heart Failure is learning how to travel well. I quickly transformed from being an easy-going navigator to someone whose name jumps on and off the No-Fly List. (Not the one held by the FBI. The more intimidating list stored in my Cardiologist’s brain.) For years it was easy to hop into the back seat of our mini-van to drive across the state or the country. I never gave it a second thought to drive out of town to friends for a weekend catch-up. I flew in and out of dozens of airports for far-away adventures. Now there are days I struggle to get across town.

So what does this mean for my life moving forward? Do I throw away my passport and decline every invitation outside of a 10-mile radius? As much as I enjoy exploring Northeast Kansas, I am not willing to give up precious time with my family and friends out of the area. And for that reason, I have changed the way I travel.


Caitlin’s Packing List for Those Who Love To Travel and Sometimes Annoyingly Can’t

Prior to Ticket Purchase

  • Before every trip* you should ask yourself, “Is this really something I want and can I give it my full energy?” Travel to see people you love, to celebrate important milestones, to experience life-giving adventure. Don’t take a trip out of friend-induced guilt or familial pressure to be in photos. Reconsider if you are feeling lousy or lethargic. FOMO is a real concern but rarely the reason to move forward with plans.
  • If the answer to the above question is a resounding “Yes!” talk to your health care team. This includes medical professionals, of course, but it also means having a conversation with others caring for you: your significant other, family members, a therapist or close friend. They can weigh in on how well you are doing (physically and emotionally) and help you think through the risks involved.
  • * SIGNIFICANT SIDE NOTE : If you are traveling for work or another community obligation, consider speaking with your supervisor about how this trip will affect you. If someone else can vouch for you in the meeting room or if you can watch the seminar online, opt out for your own wellbeing.

As You Create Your Itinerary

  • While you plan your adventure, build in extra time for everything. If you are flying, get to the airport early. If you have multiple flights, choose a longer layover. (I don’t think I can physically run more than twenty feet, much less an entire terminal trying to board a plane.) Don’t book your calendar too full–expect that it will take you longer to walk through the exhibit or shop in the market. Plus, the more buffer time you have built in the greater chance you have to rest.
  • Review your limitations and apply them to your destination. If you, like me, have an elevation restriction make your doctors proud and Google the height of the cities you will travel through. Research restaurants to see if they can accommodate your diet. Talk to your family members and ask if they are willing to leave the wedding early should you feel fatigued.
  • Know where the nearest hospital/medical provider is and keep that information on hand. Contact your insurance company about where you can receive care in case of an emergency. American carriers are notoriously nit-picky about what facilities are considered In- and Out-of-Network.

En Route to Your Destination

  • Stay hydrated. And not just with pit stop Slurpees. Drink water.
  • Keep your medications on hand and bring extra. Instead of tossing them in the trunk with the rest of the road trip luggage, put them in your purse/satchel/Ziploc bag and place them on or under your seat. NEVER put them in a checked bag to be stored (and then potentially lost) on an airplane.
  • Make it a point to get up and move. I wear high-grade compression socks on all trips over ninety minutes and get up to walk every two hours. Sometimes this will require you to pull off the highway onto a gravel road in the middle of nowhere. Sometimes this means you have to awkwardly walk the center aisle of the plane and try not to make eye contact with other passengers. Whatever the case, it is worth it.

You Have Arrived!

  • Once you have made it to the wonderful people and/or places you have been so excited to see, remember to take things at your usual pace. If you normally nap in the afternoon find a way to get back to the Airbnb for a siesta. If you are supposed to stay out of the sun consider time with friends at a coffee shop instead of the park. Don’t give up your usual habits in the name of adventure–it will drain your energy and potentially put you in harm’s way.
  • Drink lots of water and stick with your dietary plan. If you have the temptation to overindulge consider using a food tracker app to keep you within your limits. Be cautious when exploring new and/or unusual cuisine–you need to feel your best for your journey home.
  • Soak up every moment.

Bon voyage!

The Recommendations: Books

All of us find ourselves navigating life with chronic illness in some form or fashion. Whether it is something that afflicts our own body or that of someone we love, we all can find help and hope from other voices. 

There are a great number of published books available to cover a myriad of health questions and concerns. Some I have found incredibly useful–whether they pertain to heart health or otherwise–and others I think have tried too hard to be inspirational/motivational for their stressed audience. 

I dove into a number of books regarding chronic illness this past year. These three rose to the top as ones that spoke to my figurative and literal heart in 2018. They were all found at a local library–thank you, Topeka & Shawnee County Public Library!–which is another great resource I recommended for those of us dealing with The Finances I talked about in an earlier post.

I want to acknowledge up front that all three authors I am highlighting are North American white women of privilege. Being a North American white woman of privilege, I see myself in their stories and can relate on levels of social expectations and access to care. While I think we can (and should!) glean information from all peoples, I realize these particular stories will not be useful for everyone. I also realize it is exponentially more difficult to publish a book if you are a person lacking access to health care or struggling to find the financial/emotional/mental help you need to survive. All of our stories are important to share and I hope to help those with a quieter voice find a way to be heard louder.

For the Spiritual Reader

Being Well When We’re Ill: Wholeness and Hope in Spite of Infirmity by Marva Dawn

Marva Dawn is a well-published theologian who discusses her chronic health experience through the lens of Christian faith. This is a scholarly book that addresses difficult questions of faith and suffering: How do we recognize God in time of illness? How does God respond to human frailty? How do we in the Church encourage our ailing brothers and sisters? She conveys vast biblical knowledge while still leaving room for personal growth and experience.

For the Practical Reader

Soulful Simplicity by Courtney Carver

Courtney Carver is one of the best-known promoters of simple living and is the creator of Project 333, a challenge toward a minimalist wardrobe. Her most recent book is part-memoir, part-self-help and is full of practical ideas to make life easier in the midst of chronic illness. She tackles the ins and outs of simplifying daily life dilemmas involving finances, household, and other routines to create space for recovery. Each chapter closes in a centering exercise to encourage personal reflection and action toward habitual changes.



Courtney’s blog and pro tips can be read at bemorewithless.com

For the Optimistic Reader

Everything Happens For a Reason and Other Lies I’ve Loved by Kate Bowler

Kate Bowler is a professor at Duke Divinity School who shares her journey as a wife, mother, and cancer patient through her blog, podcast, and this book. Her humor and optimism make talking about pain and death much more relatable (and, dare I say, enjoyable!) and gives her readers the chance to question the meaning behind pain. Spoiler alert: She is not convinced everything happens for a reason and takes a look at God as a fighter alongside us in our disease as opposed to the reason behind our suffering.

Kate’s podcast and other musings are found at katebowler.com

Whose words have helped you in your season with illness? Please share your book recommendations in the comments!

The Finances

Being sick is expensive. Anyone who has visited a doctor under the current American health care system knows this: Every shot, check-up, and (in some cases) phone call that is tied to your well-being has a price tag. We must budget for insurance premiums, monthly medication, and (sometimes unexpected) medical needs.

And it can be overwhelming.

After paying the fifth installment of our recent barrage of hospital bills, my husband encouraged me to write this post. Not as a way to vent (although, let’s be honest, that is a much-needed conversation) but as a way to connect. Those of us dealing with chronic illness HAVE to think about our finances and I want to applaud your hard work in this difficult area of life.

So I want to share this part of my story; one that I don’t talk about much due to social norms and my desire to stay away from awkward conversations. But one that I think needs to be shared.


“I am so embarrassed,” I whispered to my husband.

He reached out and took my hand. “Don’t be. They understand. They know where our hearts are and how much we love them.”

We pulled away from a party, having just spent the afternoon eating cake and celebrating people we love. What should have been a reenergizing time left me feeling small and insignificant.

The invitation to this event showed up the same week that we got a whopping bill for my most recent Echocardiogram, something we had falsely assumed would be covered by our insurance. We committed to the celebration and decided not the let the unwelcome news of paying for medical tests get in the way of our regularly scheduled life. I pored over our budgetary spreadsheet and found a few places we could cut, one being our happily-named “Gifts!” line-item which was already nearing its monthly limit.

We were not willing to show up to the party empty-handed so we braved the department store crowds to get in on a good sale. We left with something we thought the recipient would enjoy and were pleased to have only gone over our budget by a few dollars. The gift bag was prepped and I felt we had accomplished something miraculous: Being able to give while dealing with medical bills.

At the party, I set our gift down on the pile of presents. It looked small compared to most of the other boxes and bags but I tried to not let that bother me. When it was time to gather around the gift-opener, I was sad to see the same thing we bought being pulled out of another bag, followed by two fancier items hidden underneath. The individual made their way through wrapping paper and bows and, by the time they reached ours, I had an apology crafted. “You can return it!” I wanted to shout, “But the store credit won’t get you much.” They opened the gift bag and laughed, seeing a duplicate item, and thanked us for knowing what they liked.

The party moved on but I did not. I couldn’t shake the feeling that Ben and I were no longer able to give good gifts. Digging deeper I saw the fear taking a truer form:

Our money had to be prioritized for me. Which meant less for others. 

We are walking into a season of giving. This is the time of year where we are expected to give presents to family and friends, to bring food to gatherings, to donate to charities. All these are good and wonderful things. I believe giving is an important part of life, especially in a world with so many needs. We need to help each other.

But how should you give when you are sick? When the prices for your monthly check-ups and medications eat up a portion of your budget? When you don’t have the strength or ability to help serve meals or give your time in other ways? When the donations to a local charity may end up coming back to you?

In what may sound like the ultimate Anti-Holiday slogan, I want you to prioritize your financial wellbeing this year. Even if that means you can’t give as much to others as you would like.

You, who spends hundreds of dollars out-of-pocket for Insulin.

You, who is stuck with unexpected ER bills.

You, who spends hours building and rebuilding your budget.

Set a financial limit for the season and stick with it. Don’t go into debt to buy presents for your family members. Don’t run yourself ragged trying to bake ten dozen cookies for your church choir friends. Don’t give your money to a charity out of guilt.

Your finances can be used for you this season and beyond. Without blame, you can pay your medical bills before you jump on Amazon for Hanukkah presents. (I’m pretty sure any financial planner would tell you that you MUST pay your medical bills first. I’m being generous.) The people in your life understand. Even more, the people in your life want you to be well: Physically, emotionally, financially well.

You are a gift to everyone around you. And you are worth every penny.