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. 

Recent Posts:

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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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 to be different for all of us.

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.


Recent Posts:

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

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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, doctor appointments, and my mom’s house. For Mother’s Day weekend, John and I decided to grab lunch and pick out my gift. We were out of the house; the weather was beautiful; and really, that’s all we needed, right?

I didn’t expect the rollercoaster of emotions that was about to ensue. The first challenge came before we got out of the car. For the first time ever, we used my handicap parking placard. While I’m thankful for this placard, I also had hesitations. I knew that I needed it to minimize my time upright, but I don’t look sick; so, there’s a fear of judgement. Would someone look at me like I’m abusing the system? Worse yet, would someone say something to me? I’m thankful John was there. He has the gift of not caring what other people think of him. That’s been good for this girl who often cares too much about what people think of her.

We walked into Bed, Bath & Beyond and looked for the motorized cart, but there wasn’t one. I just assumed they would have one. I used to see them in stores all the time but I never paid attention to whether they were in every store. I pay attention now. Lucky for us, John had packed my wheelchair in the car just in case. He ran back for it and we were off.

Next stop, my all-time favorite store—Target! Oh, my goodness, I was so excited! It was everything. We had gotten used to using the wheelchair, and their motorized cart looked bulky to navigate. So, we stuck with our wheelchair and John pushed me around. He stayed with me as we went through housewares and all the aisles he used to avoid. His patience meant a lot.

After a while, we decided to divide and conquer. I could use my feet to walk my wheelchair around. After all, my feet are strong, the problem with POTS is that my circulation doesn’t work well when I’m upright. I had no idea how quickly this would wear me out. I ended up sitting in an aisle waiting for John to return. I should have grabbed the motorized cart. I’m learning. I see now, that if a store doesn’t have a motorized cart and John is not with me, I can’t shop there. That’s a bit humbling. It may not sound like much, but it is when you feel like you should be able to do something and you physically can’t. You used to, but you can’t now. That’s a tough pill to swallow.

A confession… I’m uncomfortable with the way people look at me when I use a wheelchair. There is love and kindness in their eyes; but there is often pity as well. I think that’s normal and most likely how I’ve looked at others. I just don’t like being on the receiving end of it. I wasn’t going in expecting to feel this way. It rose up in me after my first few interactions with others. I’m usually super friendly. I look people in the eyes, say hello, make small talk… Yet, after a few glimpses of pitiful eyes; I found myself doing everything to avoid eye contact. I know this feeling is temporary and I’ll talk myself throug it. I just didn’t expect to feel this way.

It brings to mind a quote from C.S. Lewis, “Humility is not thinking less of yourself, it’s thinking of yourself less.” That’s what I need to work on right now. I’m surrounded by beautiful people with good intentions. There is no need for me to hide my eyes.

Another wave of emotion that hit me was jealousy. Seeing mothers walking around with their children made me want to cry. If I’m being totally honest, it did make me cry… right there in the Target. I used to walk around there with my kiddos all the time. How on Earth did I do that? It seems like that was a different life, a different person.

The birthday aisle added to the waterworks. My girls have birthdays this summer. I want to be able to take them to the store to pick out their decorations. I want to park and walk in and not have to go through the ordeal it takes for me to do so… to overcome my fears of using the handicap placard, hope an electric cart is available or have John with me, put on my emotional suit of armor, and pray that Isla stays relatively close because she’s a wanderer like her mama. Maybe these aren’t big deal things. Maybe they don’t sound like much, maybe they’re not much; but it’s frustrating. It’s a new part of my life that I wasn’t expecting and it makes me a little sad.

Birthday parties past

It also makes me think of a beloved friend whose daughter passed away. How does she feel when she sees mothers and daughters at the store? How does she handle the birthday party aisle? Seriously, how does she survive Mother’s Day? Sometimes, life is too much; just too much. We connect in joy, but we also connect in pain. Thinking of her, my whole being swells with love and tears. I don’t want her to hurt. I don’t want anyone to hurt. Yet, here we are. For the good and the bad of this journey. We all have varying degrees of pain and joy, and all are valid and an important part of our walk.

After climbing the mountain that was Target, we were hungry. Eating in a restaurant would level the playing field for me. We could sit while we did that! Due to my specialized diet; I knew that I should avoid carbs, tomatoes, and aged cheeses. Yet, daring as we are, we went for pizza. It was sooooo good. We sat and chatted and were happy. We ate and ate. I didn’t need a wheelchair because the walk from the car to our table was short. No one knew I was ill. I didn’t feel ill. Everything was back to normal.

As we drove home, the “normal” disappeared. My body started to react to what I had eaten. It was becoming harder to breathe so we laid me back and propped up my feet. I thought it was nothing that a few hours of laying down couldn’t fix; but in reality, it took days. Still, like most food-induced attacks, I told myself it was worth it. In so many ways, it was though.

I can’t tell you how happy I was to get back to our little house and comfy bed. I’m so lucky to have both. I crawled into the blankets and began to recover. I’m glad I went out. It was so good and unexpectedly hard at the same time. It was a step towards overcoming. In some ways, it showed me that I’m sicker than I’d like to believe. In other ways, it reminded me of how far I’ve come and that I’m not done yet.

Recent Posts:

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

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… Continue reading Better days are here

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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 appreciate everything I get to do. I sit more, but I’m also more present. Fear has subsided and I’m rebuilding my stores of joy.

I can’t do as much as I used to before my dysautonomia flare. I need frequent breaks and have to stay conscious of my body temperature, heart rate, and blood pressure since I don’t regulate these well automatically. I can tell they’re off when I become symptomatic.

I’m trying to get better at listening to my body and stopping when I need to. I usually feel better in the mornings and have a tougher time at night. For example, I can walk with strength throughout the first half of the day and tend to wobble more as the afternoon turns into evening.

There are still some things I can’t do. Almost all of these relate to temperature regulation or not being able to stand upright for more than 10 minutes. Grocery shopping is a lofty goal. It requires a lot of walking and reaching. Gardening is on my list of hopes for the fall. I still can’t go for walks. My walking buddy, Bailey, misses them too.

My diet is focused on low-carb, high-sodium, and low-histamine foods. What does that even mean, right? Sometimes, I pull up a stool and sit in front of the fridge waiting for a meal to appear because I just don’t know what to eat. I can eat indulgent items in moderation and in combination with protein—but for the most part, when I don’t stick to my regimen; I get tremors, weakness, tachycardia, difficulty breathing, and a bit of confusion. 

As part of my physical therapy program, I’ve worked my way up to biking 45 minutes, several days a week. Being able to do this is so good for my spirit. It makes me feel strong and capable. It’s bizarre… I have so much more endurance sitting down as opposed to standing or walking. Strolling to the mailbox takes more out of me than 45 minutes of biking.

I rest a lot. I have to go horizontal several times a day and when I do, it feels replenishing. I’m blessed to work part time from home which allows for this type of recovery. I honestly don’t know how I’d manage a 40-hour per week office job. Just getting to an office would take a lot out of me.

If I’m upright for too long, it feels like someone is reaching their hands into my chest and trying to pull me to the ground. The weight of carrying my own body becomes too much work. Many people have remarked at how nice it must be to lay down several times a day. I’m lucky to be able to lay down, but I’m not lucky to have to lay down.

When all of this started, I didn’t know how long my flares would last and what my new baseline would look like. I hoped that things would get better. Now, I have peace in better days. I wake up happy and ready for another round.

Recent Posts:

A Diagnosis

For years, I’ve known something was wrong. Tests were normal. Doctors would point to anxiety and a vitamin deficiency and I’d be on my way. I’d tell John, “When I get to the other side, I’m going to ask God what this was. I have something they can’t figure out.” Two days after Christmas in… Continue reading A Diagnosis

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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. Once I understood the full scope of my illness, I knew a spring garden was not going to happen this year. Instead, it’s been left untended since winter. It’s seen snow, weeds, and intermittent showers.

What strikes me is how some of our fall plants have lingered and flourished without care. They’ve run wild beyond their borders and sprouted the loveliest flowers. Ladybugs are combating aphids, and wildflowers and cactus are encroaching upon the garden’s exterior walls.

It reminds me of something my grandfather used to say, “God willing.” When you’d invited him somewhere, his response was always, “God willing.” I’d laugh and knew he’d be there. Now, I better understand what he meant. We’re not in as much control as we’d like to believe. When you think of it, most of us will still have plans and dreams the day we leave this Earth. There will be things we don’t get to finish. We have to lean more deeply into “God willing.”

The loveliness of these surviving plants changed how I want to approach gardening next spring. I want an unkept garden with hardy plants that will do well even when I’m not able to care for them. Plants that surprise me with their strength and beauty. I think that’ll be a good metaphor for life.

Here are John’s design plans for the garden house.

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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 identity is who you are now with this disease.”
  • “Illness is NOT a blessing, it’s a curse!!!  If you think it’s a blessing you are agreeing with the evil one who put this on you and you will never be delivered from it…”
  • “You don’t need spiritual healing if you are a true child of God.”
  • “If you want your health and freedom back, then you have the authority as a child of the living God to take it back…”
  • “It seems that you need the renewing of your mind.”

Y’all… I’m not sick because I haven’t prayed hard enough for healing. That’s bananas! Let’s be clear—I buy none of what has been stated above and it will not shake me… not even a little. In fact, it shows me how I have to help protect my fellow neighbors who also undergo such attacks.

You see, when I became ill, it was not a dark night of the soul where I wrestled with my faith. Quite the opposite. I fell deeper into my faith. I felt comforted and loved. I felt my spirit growing and the inkling of new callings.

I believe that God heals and that healing comes in many forms. Yet, I don’t believe we are here to live struggle-free lives. Sometimes, we have judgments and biases that we don’t realize until a new situation sheds light on them. There is a humility and distilling of what matters when you become ill. I am thankful for what I’ve learned and what I continue to learn. I see now why people who have been through the toughest journeys become the best ambassadors . Why the woman who beat cancer runs the cancer foundation; why the mother who has lost a child leads a bereavement center. I will lead too. I feel that calling simmering in my soul. My identity is a child of God, not my illness—but I will use this illness for good. I will turn it around into something beautiful.

Good things can come from tough places. And here’s a big one-we can still find happiness on rough days. It’s all about what we do with our situations. I have so much more to learn and I fail daily—but I know that God is with me and has good things in store. He makes me strong enough to overcome, and I will overcome. When I receive these attacks, I have also received support. A kind friend helped me go through these attacks biblically. My church family has prayed over me for healing as well as to persevere. They have cared for my body and my spirit. They have brought me meals and journals. They have loved my children. This is the church of God. This is the family we make for one another.

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Blessings of Chronic Illness on Instagram

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

 

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Chronic illness, Circulation, Coping, Faith, heart palpitations, Overcoming, Parenting, Uncategorized

“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 depleted and really needed to be filled up.

When I woke up, I wasn’t sure I was going to make it. My hands and feet were numb and I had pain and difficulty breathing when I was upright. Basically, my blood just wasn’t moving around well.

In some ways, I did this to myself. I was doing AMAZING on Friday – so I cleaned the entire house. I felt like I could keep going, so I did. I’ve been recovering ever since (totally worth it!).

It’s so much easier to push through recovery pain when you have something to push towards. I drank a ton of water, took salt pills, stretched, showered, and took breaks while getting ready.

After a crazy and still beautiful year, we WALKED back into God’s house. It felt like taking a deep breath.

Then we did something really exciting… we got a car wash. 😂 The girls seriously loved it. We really need to get them out more.

I’m grateful for these small things. I got up. I got dressed. I spent a morning outside of the house with my family. We laughed. We prayed. I felt a good kind of alive again.

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.

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with much love, sara

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