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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…

The Blessings of Chronic Illness

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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Aging – The Quest to Make Gratitude My Mirror

Looking around at the women I knew and saw – it seemed that aging took a stronger hold after 40. Bodies, faces, hair… I began to think that 40 was the magical age when I’d become “old.” 27 days after turning 40, I became so unbelievably sick. Life as I knew it… stopped. Dysautonomia is…

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.…

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…

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…

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…

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Chronic illness, Coping, Hyper Pots, Hyperadrenergic POTS, Overcoming, Uncategorized

Aging – The Quest to Make Gratitude My Mirror

The Blessings of Chronic Illness

Looking around at the women I knew and saw – it seemed that aging took a stronger hold after 40. Bodies, faces, hair… I began to think that 40 was the magical age when I’d become “old.”


27 days after turning 40, I became so unbelievably sick. Life as I knew it… stopped. Dysautonomia is like a direct flight to living in an 80-year-old body.
I’m working my way back to health (a term measured in feeling, not beauty). For me, health means moderate activity – nothing strenuous enough to give me a toned body. It means medications that increase my blood volume and my weight. It means that I fight for moments of strength and joy… and I find them.


So 40 is not the magical age when I became old. It has been an age where I’ve begun to accept imperfections externally and internally. An age where I’m letting go of what the world thinks is important, in part, because I’ve “walked” through what it’s like to be bedridden; to not be able to do the wonderful, small things that give me joy – and I KNOW these small things are so much more valuable than how a dress falls and the texture of my hair. Gratitude is the best mirror.


Has being “cute” given me power over the years? Yes. I believe it has gotten me jobs. It’s the first thing my husband saw when he met me. It has made people want to be my friend or accept me into a group. My power now is strength and experience. Am I afraid to lose my external beauty? You bet! But I’m proactively making peace with it. I call to mind my friends and family who died young and never had the blessing of growing old or seeing their children grow up.

I’m seeking lessons from those who have aged before me: how they carry themselves, what they continue to contribute, and how they see the world. I want to soak up their knowledge.

I search for blogs and Instagram accounts that feature women aging to balance society’s constant messaging that youth must be attained at all costs. For me, this is an especially important step. Due to my illnesses, I’ll never be able to use fillers and Botox like so many of my peers. Sometimes, my mind wanders and I imagine a gathering with friends where I look so much older than everyone else at the table. I want to find joy at that table, not discomfort, not shame.

Do I still want to be lovely? Certainly. I’ll seek out a pretty dress and fix my hair. I’ll find a new foundation that works with aging skin, but I dont want to fight aging. I want to embrace it, to share all of its gifts. I want my spirit to have the light of youth and the experience of age, the calm of having navigated numerous seas, and the knowing that love is all that really matters… and that includes self love.

Recent Posts:

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…

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,…

Creating a “new normal” that honors God

As a people, we are not who we were pre-COVID-19. I am not who I was pre-dysautonomia diagnosis. I don’t think we would have gone through all of this to remain as we were. As we are re-emerging into new lives and routines, I think it’s worth reevaluating what living should look like. This has…

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…

Our life has to be our message

I have a need to talk about what I’m living and learning right now, a calling maybe. I don’t think living with illness means you dwell in a corner and say that everything is great. I think there can be a helpful honestly here that binds us. I’m often told to be careful with what…

Leaving the house is better and harder than I thought

I’m going to be honest about the hard and good stuff… the inklings of fear that creep into our minds; the thoughts we’d rather not have; the allowing of sadness and thanksgiving in the same moment. When I get to leave the house, I’m so excited. Thus far, my outings have mostly been to church,…

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My baseline – what life looks like now

With so many recent health fluctuations, I thought I’d share a little about what my daily life looks like right now. The beautiful news is that I’m fairly independent, driving, cooking, cleaning, working, parenting… Am I still sick? Yes, but I’m managing it well. I go slower, but I’m going. I attend less things, but…

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.…

The spiritual attack I never saw coming

I never expected fellow Christians to be the ones to attack. To imply that I am embracing illness instead of putting my faith in God for healing. To say things like: “Any sickness/disease is from satan. satan is trying to steal your quality of life, to destroy your purpose in life.” “It sounds like your…

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…

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…

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…

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Blessings of Chronic Illness on Instagram

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Chronic illness, community, Uncategorized

The Truths of Where I Am

The Blessings of Chronic Illness

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. After working for a few hours, I rest. After I go to the store, I rest. When dinner is finished, I rest. Rest is my fuel and a complete necessity. When I don’t rest, I become weaker and weaker, extremely irritable, dizzy, and a little confused. Laying down for 15 to 30 minutes is like medicine for me. When I remember this, I can achieve so much.


I am more comfortable going out into the world and being communicative as to my needs; especially as people cannot tell that I’m ill by looking at me. This is not easy. I don’t want to inconvenience anyone or be judged for parking in a handicap spot or using a motorized cart at the store… but that’s not my reality. People cannot see my inability to regulate my blood pressure, heart rate, and body temperature. My dizziness and blurred vision are not always evident to others. They don’t realize that the longer I’m upright, the more nauseous and disoriented I become. They see a seemingly healthy woman using services for people with disabilities. I understand the judgements that go along with this and am working hard to do what is best for me no matter what and to give grace to those who judge me. The blessing of this? I find my comfort in God, not in man.


I have more good days than bad days. The bad days always surprise me and take my breath away for a bit. The thought that usually comes to my mind is, “NO! I thought I was past this!” But this is a life-long journey for me and then, I always, always catch my breath again.

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“I’m gonna see a victory”

This weekend, we went back to church for the first time in over a year.  It was everything I could have hoped for. The energy of the sanctuary. The joy of seeing our church family. I can’t believe we’ve done without this for a year, and a tough year at that. I’ve been a bit…

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…

If God asked me if I wanted this path, what would I say?

I imagine God asking me, “Would you like an easy and beautiful life where your spirit grows a little, or would you like a challenging life that reshapes how you see the world? Either way, I’ll be with you.” I’m fairly certain that I would have responded, “Easy is good. I can grow a little.”…

Better days are here

The first emotion I used to feel when I woke up was fear. Fear of putting my feet on the ground to see if I could stand. It was the gauge of whether or not I’d have a decent day or if I’d struggle. Well, I’ve recently had a slew of decent and even good…

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…

When my feet fail, my faith will stand

When I was at my worst with POTS; I went from jogging, to stumbling, to crawling. This song came on the day I ordered my wheelchair. I fell apart into it. I’ve heard it before but never like I do now… “Where feet may fail and fear surrounds me, you never failed and you won’t…

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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…

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…

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Chronic illness, Coping, Hyper Pots, Hyperadrenergic POTS, Overcoming, Uncategorized

Making space for my new life

The Blessings of Chronic Illness

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 doesn’t drink either, so they’ve just been taking up space. Plus, they’re a reminder of what I can’t have.

I decided to shift from thinking about what I lost to thinking about what I could create. I love tea pots and have collected some great ones from estate sales. When John was still working from home, he’d make us a cup of tea each morning. It was something I started looking forward to.

So, I pulled out the tea pots along with my mom’s old cookbook (for comfort and color), and turned a family heirloom box into a tea center.

It’s such a small thing, reorganizing a corner of the kitchen- but it means so much more. It’s making room for what I have to look forward to.

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The frienDship fern

The Blessings of Chronic Illness

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. 

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

The Blessings of Chronic Illness

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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Chronic illness, Coping, Hyper Pots, Hyperadrenergic POTS, Overcoming, Uncategorized

One good thing

The Blessings of Chronic Illness

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 grateful to have something to look forward to each morning.

This sentiment reminds me of a story I heard…

An old monk and a new monk were walking barefoot on a rocky path.

The young monk said, “My feet ache.”

The old monk replied, “Yes, but how wonderful does your foot feel when you lift it off the rocks? Focus on that.”

What is your one good thing?

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Can't Breathe, Chronic illness, Coping, Garden, Hyper Pots, Hyperadrenergic POTS, Mobility, Overcoming, Uncategorized

More than a walk

The Blessings of Chronic Illness

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, I feel like I’m falling behind. Here, I feel like I’m catching up. I see that life is moving all around me and I’ve been afforded a lovely view.

When we can’t move as fast, we seem to stay longer and watch more. It’s where we find ourselves and God.

In some ways, being sick is helping me to catch my breath; eventhough, there are moments when it quite literally takes my breath away.

God made a beauteous garden
With lovely flowers strewn,
But one straight, narrow pathway
That was not overgrown.
And to this beauteous garden
He brought mankind to live,
And said: "To you, my children,
These lovely flowers I give.
Prune ye my vines and fig trees,
With care my flowerets tend,
But keep the pathway open
Your home is at the end."


-Robert Frost

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Chronic illness, Coping, Faith, God, Hyper Pots, Hyperadrenergic POTS, Overcoming, Uncategorized

Creating a “new normal” that honors God

The Blessings of Chronic Illness

As a people, we are not who we were pre-COVID-19. I am not who I was pre-dysautonomia diagnosis. I don’t think we would have gone through all of this to remain as we were.

As we are re-emerging into new lives and routines, I think it’s worth reevaluating what living should look like. This has to be different for all of us.

Honoring God now is different than what I thought it would be as a child. It’s not a Sunday thing, it has to be an every moment thing.

Here are some of the things I’ll be working on to live more deliberately:

Boundaries

I’ve always worried about what other people think of me. I know that’s normal but it’s also selfish if it limits how I serve others. It’s time I drew a line in the sand. My energy will go towards walking my path considerately while not worrying about how others see me. I don’t want to worry about how people will respond to who I am and what I say or do. I’m ready to allow people to be who they are, where they are, even when they disagree with me – without dimming the truths of my spirit.

Callings

A light has been shed on callings for how I spend my limited energy and a big part of that is a desire to serve those who are sick and do not have support systems. I’m going to figure out what this looks like. Before illness, my calling was family first. I loved being with my kids, soaking them up, and putting their little feet on a good path. Well, they’re strolling down their own paths beautifully, and I feel led to take some new journeys myself. I wonder – what is calling you…

Surrender

One of our biggest learnings is surely that we are not in control as much as we thought. Our days are limited. Our health is not promised. Our finances can change overnight. God is the one constant we have, the compass that never fails, the comforter who never leaves your side. I will surrender to his will because I know he leads me down the path that is best for the growth of my soul.

I think a “new normal” sounds hard, but oh so beautiful.


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

The Blessings of Chronic Illness

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 commitments are difficult.

Becoming ill during the pandemic buffered me from feeling obligated to keep up with a “normal” life. There were less expectations, less commitments, and more time at home.

Within the confines of home, I can usually control my dysautonomia beautifully: the temperature; being able to sit whenever I need to; never having to walk very far; having the right supplements, fluids, and food (I have a very specialized diet).

Right now, I’m planning a pool party for my daughters’ birthdays with the very real possibility that I might not be able to attend. Want to know the beautiful thing? They understand and are okay with this. They know that they are loved and they’re becoming more and more selfless. Just as interesting—I don’t feel guilty. A little sad, yes; but not guilty. I know that I’m doing what I can, and John and the girls know that too.

Here’s my thought process on deciding whether or not I can go out:

  • What will I feel like that day? My heart would like to RSVP. My body is a tentative.
  • Is parking close to my final destination or will I have to walk far? If I don’t know the answer to this question, the idea of walking too far and not being able to make it becomes a genuine fear.
  • Who will be there? Are these people I feel comfortable being around if I become ill or will I feel self-conscious?
  • Will we be inside or outside? If it’s too hot, that will trigger my POTS.
  • What are we going to do? If it’s sedentary, I have a shot.

The next layer of thought is… what am I giving up?

  • If this event takes a lot out of me, what will I be missing during the rest of that day and potentially for days to come if it takes more recovery time?
  • Will I be able to do my physical therapy?
  • Will I be less involved with my kids at home?
  • Will I be able to make our meals?
  • Will I be able to work or knock out any other tasks?

Then there’s the planning for going and recovering.

  • Things as simple as showering and getting dressed require recovery time for me. I have to build this time into my day. Gone are the days where I can rush out the door… just pick up and go.

Before Dysautonomia took over…

I could dance, participate in 5Ks (I did get sick after this 5K though – I had POTS and didn’t know it), play sports, host backyard parties… I’ll slowly and thoughtfully add many of these activities back in, I hope.

I went to my mom’s the other day and packed a huge bag for myself. It reminded me of when my children were babies. It was full of solutions for all the “what if’s” that could happen. Being prepared gives me a peace and makes me more confident in leaving the house.

Right now, I have safe places where I feel comfortable going out: family member’s houses, church, the doctor’s office, even sit-down restaurants where I know parking will not be a challenge.

Does this sound like I’m over-thinking it? Maybe; but trust me when I say that if you lived through the consequences of not being prepared (dizziness, decreased mobility, an inability to stand upright, feeling like you can’t breathe, weakness, nausea, migraines from not having enough blood in your head), you’d over think it too.

Right now, I’m not physically capable of living the same kind of life; but I still live a beautiful and fulfilling life. I plan to continue getting better and better. Meanwhile, I think it’s good to share how living is in this moment.

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Our life has to be our message

The Blessings of Chronic Illness

I have a need to talk about what I’m living and learning right now, a calling maybe. I don’t think living with illness means you dwell in a corner and say that everything is great. I think there can be a helpful honestly here that binds us.

I’m often told to be careful with what I say. That my words have power. I believe they do. Yet, I don’t think that means I should preclude the honesty of how hard and beautiful this journey can be.

I pray. I cry. I have fears. I have strength. I am so completely human and yet I am on a path that has been created by God.

Some people want me to speak only healing words over myself so that I can become a testimony. Some people want me to say that I’m fine because the truth makes them uncomfortable. Some people genuinely want to know where I am on this journey.

Y’all, I’m not on the road to having a testimony. Every day that I live must be a testimony – one of devotion, perseverance, faith, surrender, gratitude… one of honesty.

If you ask me how I’m doing; I will tell you. And when I ask you how you’re doing; I hope you’ll tell me. I don’t want to hear what you’re trying to convince yourself of. I want to know exactly where you are so we can walk step in step together.

God didn’t give us the spirits we have so that we could pretend them into something else. Goals, faith, and determination are important. So is a clear view of our gifts in the present moment.

I have to remember that little eyes are watching how I navigate this life.

So, this is how I’m going to do life. I’m going to lean in to the inklings, to the callings, to the hard and beautiful conversations.

I will speak from where my spirit is and pray for guidance and humility. I will be a friend. I will be vulnerable. I will fail. I will try again. And I will always, always love.

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