Category: Parenting

Adrenaline, anxiety, Caretakers, Chronic illness, community, Coping, Faith, Garden, God, Hyper Pots, Hyperadrenergic POTS, Mobility, Overcoming, Parenting, Uncategorized, Weak

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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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…

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,…

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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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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…

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…

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,…

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.…

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Chronic illness, Coping, Faith, Fatigue, Hyper Pots, Hyperadrenergic POTS, Levine Protocol, Mobility, Overcoming, Parenting, physical therapy, Uncategorized, Weak

My baseline – what life looks like now

The Blessings of Chronic Illness

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.

My cuddle buddies

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.

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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…

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…

“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…

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Blessings in your inbox every Sunday

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

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

Powering through to the good stuff!

The Blessings of Chronic Illness

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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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…

I thought I was making myself sick

After being told for years that my ailments were anxiety, I became a disbeliever in my own body. I stopped believing in my ability to decipher if I was physically ill or not. I spent the past two decades convincing myself that anxiety was the cause of my dizziness, weakness, heart palpitations, tightness of chest……

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Blessings in your inbox every Sunday

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

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Brainfog, Caretakers, Chronic illness, Coping, Faith, God, Parenting, Uncategorized

When your identity is stripped away

The Blessings of Chronic Illness

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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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…

Blessings of Chronic Illness on Instagram

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.

 

You might be interested in:

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

“I’m gonna see a victory”

The Blessings of Chronic Illness

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.

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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Chronic illness, Coping, Faith, God, Parenting, Uncategorized

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

The Blessings of Chronic Illness

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.”

Maybe that’s why this wasn’t my choice to make.

Sometimes, I want off this lifepath. I want my old body back with all of its freedom and abilities. Still, I know what’s more important than my physical healing is my spiritual healing. I feel Him with me on this journey. You see, no one truly understands what it’s like to live in my body at any given time except Him and me.

  • Three years ago
  • Three weeks ago

I live a life of paradoxes-but don’t we all? There are moments of total fear and complete surrender. Every day, I fail and succeed. I am weak and I am strong. I am mean and I am kind.

Being ill makes you reevaluate EVERYTHING. Especially who you are and how you interact with the world. Sometimes it can feel like your old life doesn’t make sense for you anymore. And the truth is, it may not, but I don’t think that’s a bad thing.

Before I became ill, I didn’t see how I could remove anything from my to-do list. My sense of self was dependent on how much I achieved and how well I achieved it. Now, there are days when I have to lay down to recover from showering. So, imagine how conscious I have to be in organizing my schedule to get everything else in: working, making meals, caring for my daughters, catching up with John… If something depletes me and doesn’t increase the greater good, I don’t have room for it. The result is that many of my past priorities have drifted away. My old sense of self is being redefined.

It feels like I’m cleaning my soul and making room for what really matters. In this season I’m finding spaces that I didn’t know existed and callings I didn’t expect. When I live like this, it gives me the energy I need for my new life. 

Still, there are things that must be done that I have little energy for. That’s the reality of it. Sometimes it’s something as simple as picking up the girls from school. My body can become weak and I drape myself over the console to rest as I drive. We’ll do homework. I’ll make dinner, then remind them 10 times to shower. I push myself and become exhausted and cranky. I’ll become angry that what little energy I have is spent on mundane to do’s. Yet, aren’t these the beautiful moments I live for, the small interactions with the people I love most? In these moments, I need such grace.

I suppose there are parts of me that still long for control and for achievement. My body is slowing me down and maybe that’s what my soul needed.

My friend sent me this picture. It fits where I am so perfectly.

Okay God… you make the path, just keep walking with me. Life doesn’t have to be easy for it to be good.

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’m coping with chronic illness.

You might be interested in:

Blessings of Chronic Illness on Instagram

Recent Posts:

Brainfog, Chronic illness, Circulation, Compression Stockings, Coping, Faith, God, Hyper Pots, Hyperadrenergic POTS, Levine Protocol, Mobility, Parenting, physical therapy, Salt Tablets, Uncategorized

Better days are here

The Blessings of Chronic Illness

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 weeks (not days!). I no longer have doubts about putting my feet on the floor. I haven’t used a wheelchair in a while and only need my cane at night and for longer distances. I feel stronger and very hopeful.

I believe this flare is on its way out and I am so thankful for the prayers that have been said for me.

You prayed for more good days and they have been given.

I’m eager to see what my new baseline is and how my body works. My body is not what it was, but it’s better than it is has been. I’ve gone from struggling when upright, to being able to stand for almost 10 minutes. You can get so much done in 10 minutes! I may not be able to go to the grocery store yet (the thought of it still terrifies me), but I can make all of our meals. I can care for myself and then some. There are days when I even change out of pajamas. 😉

I used to lay down between work calls to get more blood to my brain, thinking it would clear the fog and that I’d be smart again. Now, I can work for longer periods. I wash my own hair, drive the kids to school, and do laundry. I’m going to let the girls keep packing their own lunches though. I think it’s good for them.

I don’t know what led to this upturn. We implemented many changes at one time, so it’s hard to tell what combination worked. I can tell you that it wasn’t the medication. My body didn’t handle the first trial of medicine well and I ended up in the hospital. Meds work beautifully for so many people. They just didn’t work for me… at least not right now.

I was surprised at how quickly my body deconditioned within the first few weeks of becoming ill. Now, I’m two months into the Levine Protocol physical therapy program and my strength is improving greatly. I take salt pills and drink extra fluids to increase my blood volume. I wear compression stockings to help me walk (they’re not pretty but I don’t get far without them). My diet has changed a lot too. Less carbs and sugar. No big meals. Lots of produce and protein. I’ll never be able to drink coffee or alcohol again. I thought this would bother me more than it actually does.  

Compression stockings are like magic feet for me. They give me strength and allow me to walk more independently.

One big lesson I’ve learned is to pace myself. I can’t do as much as I used to and that’s okay because I can do what matters. If I overdo it, I’ll be too weak to enjoy the next day. “I can’t spend my energy on that,” is the most common line that comes out of my mouth.

This past flare lasted over three months. I’ve never been sick that long in my life. I feel blessed that it wasn’t longer. I know that I’m still ill, that POTS doesn’t go away—but compared to the last few months, I feel pretty great!

This is new territory and I’m treading carefully, but I’m also enjoying every good day.

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

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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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Adrenaline, anxiety, Can't Breathe, Caretakers, Chronic illness, Circulation, community, Compression Stockings, Coping, Faith, Fatigue, Fight or Flight, God, heart palpitations, Hyper Pots, Hyperadrenergic POTS, Parenting, Weakness

I know what death feels like

The Blessings of Chronic Illness

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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