Caretakers, Chronic illness, community, Coping, Faith, Garden, Hyper Pots, Hyperadrenergic POTS, Overcoming, Uncategorized, Weak

The frienDship fern

I’ve adored this fern for years. I’ve protected it from deer, replanted it as it grew, and sat in its shade as it hung from the porch eave.  Caring for it every morning was part of how I calmed myself.

This winter, I was too sick to care for it during the freeze and it was on the brink of death. So, my neighbor fostered the fern until I was strong enough to care for it again. 

She delivered it to my porch yesterday, having spent the past few months  nursing it back to health. 

As I was admiring its new leaves, I thought… this fern is just like me. Not perfect, but strong. 

Now, when I see this fern, I see friendship and resilience – and I love it all the more. It’s a tangible reminder of the gifts I’ve been given. 

Recent Posts:

The Truths of Where I Am

I feel stronger and the gratitude I have for this is immeasurable. I am getting better about reading my body and learning my new limitations. My limitations are for my body, not my spirit. I need to rest several times throughout the day to be able to keep going. Once I get dressed, I rest.… Continue reading The Truths of Where I Am

Making space for my new life

In this new season of life, coffee and wine have been moved to the do not consume list. While I’m okay with that, I still miss the idea of what they represented for me: company, friends, comfort, warmth… I think that’s why I’ve been reluctant to tuck away the coffee pot and wine rack. John… Continue reading Making space for my new life

One good thing

Finding one good thing can make the world right again. Today, my good thing is very simple—cream of wheat. My stomach has been sick and my food choices, limited.  It’s been comforting to find one warm, soothing thing that I can eat. Would you believe that it’s become my equivalent for coffee and dessert? I’m… Continue reading One good thing

More than a walk

I’ve been feeling a little down lately. I think that’s normal. The world is coming alive again and it emphasizes some of my limitations. I cherish the days when I’m healthy enough to walk through the creek behind our little house. There are so many spots to stop and rest. Usually when I slow down,… Continue reading More than a walk

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I didn’t know what was coming, but God did

Five years ago, my life changed. Two of the people I loved the most passed away. My grandfather who helped raise me and my cousin who was only 39. She had five-month-old twins. 

Trajedy like that brings clarity. I could see what really mattered and what I needed to change in my life. I was healthy then and the interesting thing is that all of the changes I made, ended up being amazing blessings when I became ill. 

I had been working 60-hour weeks. The stress was high and I was missing so much time with my little girls. I resigned. I was going to take a year off but ended up taking on part-time work from home instead. Luckily, I’ve been able to maintain this work even after becoming ill and it allows us the income for all of our necessities. 

I joined a church and made the proactive choice to surround myself with good people. These are the people who have shown up in my life since I got sick. They’ve brought food, journals, and kindenss when I needed it most.

We also bought this little house on a pretty piece of land. I was looking for somewhere that felt like a vacation. It’s tiny- two bedrooms and one bathroom, but outside, there’s room to roam. I can take short walks and feel restored… or winded. Living here has been such a blessing while being sick. The view from my bed is lovely and I have lots of little friends to keep me company. Plus, my cousin’s babies (who are five now) live just a few minutes away and I get to love on them for her. 

All these decisions have brought me joy during a tough season. I feel like God was lining my path with gifts to get me through. 

Retrospectively, don’t we always see how God was navigating things for our good? Even the hardest times, he lined with blessings. 

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The frienDship fern

I’ve adored this fern for years. I’ve protected it from deer, replanted it as it grew, and sat in its shade as it hung from the porch eave.  Caring for it every morning was part of how I calmed myself. This winter, I was too sick to care for it during the freeze and it… Continue reading The frienDship fern

Relearning how to interact with the world when you run on a day-to-day baisis

With the world reopening and me feeling better, our schedules are getting busier again. My new limitations make things confusing to navigate. I want to say yes to taking my children to practices and birthday parties, to visiting with friends and family—but the reality is settling in that I run on a day-to-day basis and… Continue reading Relearning how to interact with the world when you run on a day-to-day baisis

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Caretakers, Chronic illness, Coping, Faith, Hyper Pots, Hyperadrenergic POTS, Mobility, Overcoming, Parenting, Uncategorized

Powering through to the good stuff!

With chronic illness, you have good and bad days, and you never know how you’ll feel when. It puts a damper on being reliable.

As a type A++ personality, this is a huge struggle for me. I’m a super punctual, likes everything just so, don’t flake kinda girl… or at least, I was.

This weekend tested me. We had a special date night planned with Ellie. She’s an exceptional little person and deserves every good thing. After staying home for the greater part of a year, all she wanted to do was visit a bookstore, have a root beer float, and lay in bed and read together. That’s what I wanted too!!

We’d been excited about this all week and sure enough, as Friday approached, my body was becoming weaker with tremors and tachycardia. Since I could stay fairly stable as long as I sat down, we loaded up the wheelchair and pushed through.

There’s something alluring about shelves filled with books: the stories and thoughts, the millions of things you don’t know yet but could.

El was elated to be back in the world again.  She scanned the shelves of books and petted each stuffed animal. She said it was like a dream.

I was the opposite of content. It turns out that I don’t like being pushed in a wheelchair. I like to start and stop when I want, go at my own pace, turn when I want to, face the direction I want… I had no idea how frustrating giving up control would be and how unkind it would make me feel. John patiently adhered to my directions but I’m pretty sure it took all of his strength not to park me in the corner.

I eventually asked to be left in an aisle. I was tired of feeling like luggage. Nights in general are harder for me physically, so that probably added to my irritability. Next time, we’re making daytime plans.

Sometimes, I think giving up control is one of the biggest lessons in being ill. It’s not one that I’m doing well with yet, not by a long shot. I can’t control how my body feels, when I’ll be strong enough for an outing, or whether or not I’ll be able to walk independently or need a mobility aid on any given day. So I need to work on controlling how I respond. Ironically, I know this comes through surrender. That’s where I will find patience and a deeper gratitude for the moment. If I keep trying to control the uncontrolable, I’ll go mad.

I was irritable and not feeling well, but we pushed through and had a beautiful night. I would snap and I’d apologize. I’d forgive myself and try again.

John handed me this book as a joke when I was being especially evil. It actually hit the mark so it came home with me.

My book picks:

I love, love, love reading anything about near death experiences. Imagine Heaven pairs near death experiences with biblical promises. I think I’ll read Suffer Strong first though. I’m just finishing up Katherine and Jay Wolf’s first book, Hope Heals. It details how they leaned on God when Katherine underwent a massive brainstem stroke as a young mother at age 26. I’ve found myself repeatedly drawing from their strength over the past few weeks. Reading their story has put beautiful thoughts in my mind and and in my heart.

Ellie’s book picks:

She’s a huge fan of the Wings of Fire series. She likes to read the books first, then the graphic novels. I love it when she can’t put down a book. White Fox is the first in a series of books that has been translated from Chinese to English. It’s a bit of a dark fairy tale. We’ll see how she likes it.

Most importantly, Ellie had a great night and that’s all we really wanted.

Here’s a little more about my story and how I’m coping with chronic illness.

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The untended garden house

This is the first spring for our little garden house. It was a dream five years in the making. John worked so hard to design and build it. I researched plants and could see everything in my mind’s eye. Yet, in December, I started to feel unwell and grew sicker for the next few months.… Continue reading The untended garden house

Things I used to hide

A year and a half ago, I posted these pics of our trip to Enchanted Rock. What I didn’t share was that I couldn’t make it up the hill. My body was so weak and tired. I stopped about a third of the way up. (A third of the way sounds pretty good to me… Continue reading Things I used to hide

My first day alone

Today is a day I have been dreading… John went back to the office. I dropped the girls off at school and came home to a dark house. The electricity was out and to my surprise, it felt comforting. I lit a candle, let the cat inside, and sat with the dog as we watched… Continue reading My first day alone

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When your identity is stripped away

Who are you? Your gifts, relationships, the roles you play?

Chronic illness (and any trauma really) will rob you of everything on your list at one time or another. It will take all that you thought you were, shatter it, and leave you to rebuild yourself in the light of humility.

Go ahead, scratch off each item… Every. Single. One.

  • I didn’t realize how vital being smart was to my identity until the brain fog hit and I had trouble keeping up at work.
  • I don’t feel like I’m a capable parent on days when my daughters are taking care of me.
  • I don’t feel tenacious when the most concrete thing I can produce in a day is dinner.
  • I don’t feel like much of a wife when my husband has to wash my hair.

What’s left of us when we scratch every adjective off the list?

What’s left when we’ve sifted through to the most granular parts of our being? Are we worth less?

I thought I knew myself well. I even thought that I loved myself. To my surprise, it was all conditional. Becoming ill showed me that much of my self-identity was built upon what I could accomplish, what I could earn. I played with my daughters, worked, was a loving partner, cared for ailing family members, invested in my friendships… and somehow that made me worthy. It made me, me. When I became ill, so much of that came to a stop. I could give very little and needed so much. I couldn’t earn the “worthiness” of the help I was receiving.

One evening, John told me that I was everything he could ever want… and I laughed. Through my fear, sadness, and anger—I couldn’t see the beauty he saw.

And though I couldn’t earn it, John’s love didn’t stop. No one’s did. I was slowly able to see how everyone around me was growing through helping me. I was not able to help them physically, but allowing them to help and love me was good for their spirits. When I was scared, John would sit with me until I fell asleep. My daughters would quickly run over to steady my balance when I stumbled. My friends were happy to sit beside me in the quiet and in the tears. My illness brought kindness to all of us.

I was left with a pivotal question—if they could love me unconditionally, could I love myself even if I felt like I hadn’t earned it?

While my body recovers, my spirit is hard at work too. I feel changes in unseen ways. I recognize the lies that have held me back: “you’re not worthy,” “your voice is not important,” “stay small and everything will be okay.”

God is shedding light on the truth—when my love for myself dwindles, His love for me is still there. Even if every person around me had fallen away, God would have been there with me, closer to me than my own breath.

There are days when I cannot physically contribute, but my spirit is not worth less. I will not be overtaken by illness. My heart is growing in humility and gratitude and I can see how I am deserving of love right where I am. We are all deserving of love right where we are.

So, what’s left when I remove every adjective from the list? What’s left is my spirit. What’s left is God in me.

Again, I ask — who are you?

My prayer is for you to see how beautiful and worthy you are, in your good moments, but especially in your tough ones.

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Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

Here’s a little more about my story and how I’m coping with chronic illness.

 

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anxiety, Caretakers, Chronic illness, Coping, Faith, Hyper Pots, Hyperadrenergic POTS

My first day alone

Today is a day I have been dreading… John went back to the office. I dropped the girls off at school and came home to a dark house. The electricity was out and to my surprise, it felt comforting. I lit a candle, let the cat inside, and sat with the dog as we watched the drizzle fall outside. I didn’t feel alone and I didn’t feel scared. All the what if’s dissipated. (What if I need help? What if I have a bad day? turned into… I am fine. Today is a good day. Even if it were a bad day, I’d be okay.)

Here I was, dreading this day, but it feels peaceful like a calm after the storm.

I was lucky that John was working from home while I was at my worst. It was a huge blessing. When I needed help getting to the doctor, making meals, getting around the house—he was there. When I was scared—he was there.

Now, I’m doing much better and his leaving feels like a natural part of my healing. I’m on my way to becoming more independent again. I’m going to lean into it and enjoy the calm of this dark, quiet day.

Here’s a little more about my story and how I’m coping with chronic illness

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

with much love, sara

Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

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The Blessings of Chronic Illness on Instagram

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Caretakers, Chronic illness, community, Coping, Faith, Fatigue, God, Hyper Pots, Hyperadrenergic POTS, Uncategorized, Weakness

I don’t want to lose the clarity of being sick once I get well

Being ill changes you. It lights a fire in your soul. More clearly than ever before, you see what’s important, what kind of life you want to live, and who you want to be with. For me, I have very limited energy so I have to be purposeful with it.

What surprised me was how being sick made me long to serve others. I don’t believe this is me, but God moving in me. I know what suffering is and I don’t want anyone else to feel like this. I know how to care for people in a way that I didn’t before. My heart is ready; my body is not quite there yet.

So, I do what I can from home: send encouraging texts, pray for people in my support groups, write a blog, and dream of how I can care for others when I’m well again.

I have these comforting memories from when I volunteered at nursing homes in high school. They’d give me a list of residents who didn’t receive visitors and I’d go chat with them. More than 20 years later, their faces are flashing clearly in my mind as I write this. All they wanted was love. I may not have been good at geometry or foreign language—but I was really good at love. It was more than that though. They saw me—just me, who I was, right where I was. The sick have a way of doing that. I watched the end of their journeys and I was surprised to find that I was happy for them when they passed away. I knew they were free.

Well, life grew more chaotic with every year and I became more self focused. I was either overwhelmed by my to do list or I would sink into the numbing light of my phone. I was exhausted, distracted, and just staying afloat.

I was so busy: work, family, friends… “a full life…”

And then it stopped.

Becoming ill with Hyperadrenergic POTS, a form of dysautonomia, cleared my schedule and made my circle small again. As I lie here, I keep thinking that when I heal, I want to serve those whose spirits are hurting. I want to hug those who are alone. I want to pray with those who are scared.

“Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain.”

1 Corinthians 15:58

I know that I will have better days—and I’m excited about that, but I don’t want to lose the fire for service that being ill has lit in my soul. I don’t want to go back to the routine of my adult life. I want to incorporate the kindness of my youth and the lessons of my struggle.

I’ve been so incredibly blessed to have support while being ill. I know others aren’t as lucky. And many suffer much more than I do. I’d like to find a way to spend my life serving them. I don’t know what that will look like but I’m praying about it. The answers will come and I need to make sure I’m ready.

We can tell people about God, but we also have to be His hands and feet to care for them when they are in need.

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

with much love, sara

Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

Here’s a little more about my story and how I cope with chronic illness.  Continue reading “I don’t want to lose the clarity of being sick once I get well”

anxiety, Caretakers, Chronic illness, community, Compression Stockings, Coping, Faith, The Beginning, Weakness

So, let’s talk about going from being the caretaker to being taken care of…

Being taken care of…

Does the thought of that make you uncomfortable? I’m so uncomfortable with it. Why is that? Do you feel like you have to earn and not receive? Don’t you feel a great sense of purpose when you take care of someone else? So, why would you deny others the opportunity to take care of you?

The majority of my life, I have been a caretaker as a wife, mom, employee, daughter, sister, friend… I never thought that would change. Let’s be honest – I WAS NOT PREPARED FOR THAT TO CHANGE! Now, I am in a place where I need a lot of help. Sometimes, on tough days, help with things as basic as washing my hair or putting on compression stockings so I can walk more throughout the day. Can you imagine someone putting on support hose for you… all the unflattering angles?! I often look at John and wait for him to get annoyed with my NUMEROUS requests, but he doesn’t. He jumps at the opportunity to make me feel better. He’s worn out but he’s honored to help me.  

There are many moments when I question my value, my deserving of help; and I fear that I’ll burn out those around me. I don’t want to be a weight. None of us do. Yet, we all need help in one way or another and we are able to give help in one way or another. We can give the gift of prayer from our beds, or calls and texts of encouragement to those who need it. People know that we know what it’s like to be scared… and we know what it’s like to be brave. When challenges come into their lives, they will reach out to us, and we have to be ready to share everything we’ve learned to help them.

I’m not great at accepting help, but I’m working on it and I think it’s been a huge lesson in humility and gratitude – one that I am still learning. I can see that it is good for my soul to receive. It is changing me.

I pray that you give openly and receive openly; there is a season for each.

Ellie took this picture. She loved how the light broke through the clouds. I agree with her.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

with much love, sara

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I know what death feels like

My body stopped sending enough blood to my lungs. It felt like death, like a huge weight was crushing my chest and keeping me from breathing. I gasped and ripped off any constricting clothing, trying to find air.

I tried to sit up on the couch but hit the floor instead. And then, for some reason, I crawled as though I could crawl away from this, but I couldn’t. I couldn’t strip this off or crawl out of it. In some ways, I had to give in and in other ways, I had to fight.

My adrenaline went up (which it common with Hyper POTS), and my fear was palpable. I started hyperventilating, making everything worse.

With numb hands, I reached for the phone to call Dio, my friend who is also a gifted physician. She had me lay flat, put my legs in the air, and slow my breathing. I let her go to focus on breathing. Talking was too much work.

And slowly, the blood seeped back into my lungs and I could breathe beautifully as long as I stayed lying down. That’s because most POTS symptoms cease when you’re horizontal. My body is in a fight against gravity.

My fear subsided, leaving me sad and angry. I wanted to throw a massive tantrum but that would have stolen my air. So, I fought to stay calm and I let a few tears roll down my face. With each breath, I was learning to be mentally and emotionally tougher.

By now, Isla had drug over a blanket, my journals, and a book. I didn’t see her do it. It was like she just appeared and her presence was life. She opened the book and held its pages above my face to distract me. Then she drew pictures. I asked if she was scared and she said, “yes.” Which made me fight harder. I told her, “I’m sick but I’ll live. I’ll be here. I’ll be fine.”

John rubbed my legs and Ellie brushed my hair. Every time I tried to get up, the weight on my chest returned and I stopped because I didn’t want to feel like death again.

So, I made peace with staying on the floor until a thought hit me… I’ll have to go to the bathroom soon. No… I’d rather lie in my own urine than not be able to breathe again. We called my mom and asked her to pick up incontinence pads in case I needed them and I knew I’d need them.

After working a 12-hour shift, my mom arrived with the supplies that I didn’t want but needed. She talked with me. Strengthened me.

John moved a mattress to the living room floor and my mom helped roll me onto it. El climbed in with me. John and Isla laid on the couch next to the mattress. We slowly drifted to sleep.

Around four in the morning, I woke up, and fear flooded me. Could I sit up? Oh Lord, please let me sit up. Please let this be over. I slowly sat up… and I could breathe. It’s a better day.

This isn’t just me. This is my family. This is every chronically or terminally ill person out there and so many of them have it much worse. I’m lucky, I have an amazing support system. Can you imagine people who don’t? How much harder is it for them to fight, to find peace? We can’t just tell them about God, we have to be His hands and feet to care for them when they are in need.

A special thank you for caregivers:

“Whatever you did for one of the least of these brothers of Mine, you did it for Me.”

Matthew 25:40

Side note: 

When John took this pic, I looked at him angrily like, “What on earth are you doing?” He said he wanted a way to explain how bad things get if he needed to. Now, I’m glad he took it. It helps me remember how scared I was and that I got through it.

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscrcibe to this blog and its social accounts to stay up on new posts.

with much love, sara

Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

 

Here’s a little more about my story.

You might be interested in…

Blessings of Chronicle Illness on Instagram

Blessings of Chronic Illness on Instagram

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Adrenaline, anxiety, Caretakers, Chronic illness, Circulation, community, Coping, Faith, heart palpitations, Hyper Pots, Hyperadrenergic POTS, Levine Protocol, physical therapy, Weakness

When my body gives out, community gets me back up

The highs and lows with chronic illness are extreme. Today, I experienced both.

Physically, I was done. I couldn’t walk 10 steps without falling to the floor. After every few steps, my chest would feel like it went empty and I’d hit the ground. My nervous system needs to be completely rewired and PT is a big part of that. Yet after falling on the floor, you can probably understand why I was terrified of climbing on the bike for PT.

I broke down a bit… a lot… a lot, a lot…

I’m jealous of people who walk and stand like it’s nothing. I’m jealous of people who don’t have to plan their trips to the kitchen to get water and how they’re going to get to the restroom. I’m jealous of people who aren’t scared to be left alone for a few hours.

So, in my fear, I called Dio, my soul sister and eternal friend. She’s the one I was hitched to since the first day of high school, the one I can ugly cry with, and also the one who gave me these PJs right before my illness struck (like she psychically knew I’d be living in PJs for a while). She talked me through the worst of it. She made me feel strong and heard. She gave me permission to wig out. Then, she made me get on the bike.

While I was on that bike, a kind friend from church texted offering to get my groceries. We’re good on that front but the offer felt like a huge hug when I was at a low and scared moment. For her, it was an easy offer. For me, it was a lifeline.

And then… I finished 18 minutes of bicycle PT and I feel great. I’m a little scared to walk but I’ll get there. Hyper-POTS, the form of dysautonomia that I have will not win today.

Can you see the high? It’s not that I finished PT, even though I’m super excited about that. It’s that you can absolutely be the light that gets someone through the dark. Not just for someone who is ill, but for everyone around you wherever they are on their journey. We all need lights and I hope someone gives you as much as I’ve just received.

Thank you for reading this post.

I want so much for people to understand this journey – what we learn and how we grow through being sick.

If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.

with much love, sara

Blessings in your inbox every Sunday

Start your week with a bible verse for reflection, positive quotes, and inspirational articles.

Here’s a little more about my story.

You might be interested in…

The Blessings of Chronic Illness on Instagram

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