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:

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…

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,…

Loading…

Something went wrong. Please refresh the page and/or try again.

Blessings of Chronic Illness on Instagram

Recent Posts:

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,…

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.…

Loading…

Something went wrong. Please refresh the page and/or try again.

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.

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

June 14, 2021June 13, 2021 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.

Recent Posts:

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 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…

Loading…

Something went wrong. Please refresh the page and/or try again.

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.

anxiety, Can't Breathe, Chronic illness, Circulation, community, Coping, Fatigue, Hyper Pots, Hyperadrenergic POTS, Mobility, Overcoming, Parenting, Uncategorized, Weak

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

May 24, 2021May 23, 2021 The Blessings of Chronic Illness

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.

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…

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……

Loading…

Something went wrong. Please refresh the page and/or try again.

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.

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

May 10, 2021May 9, 2021 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.

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:

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

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

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…

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.

Adrenaline, anxiety, Brainfog, Chronic illness, Circulation, Compression Stockings, Coping, Fatigue, Fight or Flight, heart palpitations, Hyper Pots, Hyperadrenergic POTS, Legs, Levine Protocol, Salt Tablets, The Beginning, Uncategorized, Weak, Weakness

I thought I was making myself sick

March 31, 2021April 11, 2021 The Blessings of Chronic Illness

And like so many people with anxiety, I believed that it was my fault. I believed that I had these physical feelings because I wasn’t mentally and emotionally strong enough. My confidence was replaced with a chaotic dialogue. “You’re dizzy because you need to calm down… You’ve never passed out in the grocery store before so stop being ridiculous. You’re not going to pass out today…”

I fought anxiety. I fought so hard! I took medications. I worked out. I meditated. I changed my diet. I read self-help books. I listened to podcasts. Yet, I was still sick and I was still scared.

Learning that I had dysautonomia was the first step to regaining the belief that I was interpreting my body correctly. It freed this resounding roar of, “I knew it! I knew there was something else that wasn’t right.” So many of my symptoms that were from dysautonomia were attributed to anxiety. All too often, anxiety has become a crutch diagnosis. It is the label many are left with when tests don’t find answers. It puts a halt to people’s journeys to find answers and it even belittles those who are suffering from anxiety by being a catch all.

Year after year, day after day—I thought I wasn’t smart enough, determined enough, strong enough… and maybe even that I wasn’t deserving enough…

Thinking I was too sensitive to be in the heat, then discovering, “Hey, I actually don’t sweat anymore.”
Believing I wasn’t strong enough to be in leadership roles. My heart would beat uncontrollably in meetings with an aggressive supervisor. Not mild palpitations, I’m talking pass-out-quality pounding. I found myself looking for every opportunity to get out just to calm my heart. I know now that the type of dysautonomia I have, Hyperadrenergic POTS (Hyper POTS) causes massive adrenaline dumps during times of stress.
Feeling ashamed because I was too scared to drive long distances. I often felt like I couldn’t breathe when I was driving. I’ve since been able to track that my heart rate often increases over 40 bpm in this position. It goes up because my blood is not circulating properly and my heart is trying to compensate by working harder.
Thinking I was ridiculous for being scared to go into grocery stores. The combination of standing, reaching for items, and fluorescent lights was dizzying. I remember mustering up all of my energy to push through when all I wanted to do was leave. I would look around at people who were 40 years older than me and believed that they looked so much healthier than I felt.

Did I ever share that I felt this way with anyone? Never! It was crazy talk.

So, it turns out that I haven’t been as anxious as I thought. I’ve been sick! I’ve had these obstacles and I kept going. I’m not weak, I’m strong.

Now, I absolutely know that I also have anxiety. I think it would be hard to live through this and not. All of these ailments inspire anxiety; they draw it out of me and then that anxiety exacerbates everything. It’s still hard to know where the line between dysautonomia and anxiety lies. Maybe that’s because that line doesn’t end, it blurs.

Even if I had been fighting anxiety without dysautonomia, I wish I could have seen the bravery in that. I wish that my internal dialogue had been loving instead of self-deprecating. No one with anxiety chooses it. I never chose it! It’s like living in a prison of fear—the least we can do for ourselves is have self-compassion as a cell mate.

So here’s to self-compassion!

I have anxiety. I have dysautonomia. I am stronger than I thought. I am braver than I knew.

Thank you for reading this post.
I want so much for people to understand this journey – what we learn and how we grow through being sick.
If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.
with much love, sara

Blessings in your inbox every Sunday

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

Here’s a little more about my story.

You might be interested in:

Recent Posts:

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…

March 26, 2021April 11, 2021 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

Blessings in your inbox every Sunday

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

You might be interested in:

Blessings of Chronic Illness on Instagram:

Recent Posts:

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

When my body gives out, community gets me back up

March 26, 2021April 11, 2021 The Blessings of Chronic Illness

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

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

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

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

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

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

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

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

Thank you for reading this post.
I want so much for people to understand this journey – what we learn and how we grow through being sick.
If you’d like to join me, you can subscribe to this blog and its social accounts to stay up on new posts.
with much love, sara

Blessings in your inbox every Sunday

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

Here’s a little more about my story.

You might be interested in…

The Blessings of Chronic Illness on Instagram

Recent Posts:

Chronic illness, Faith, physical therapy, The Beginning

A Diagnosis

March 25, 2021April 28, 2021 The Blessings of Chronic Illness

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 2020, my first major flare-up hit. I went from walking/jogging two miles a day to being completely wiped from packing school lunches and sitting on the floor in my house to rest while walking from room to room. I’m usually fine when I lay down or sit down, but weak and dizzy when I stand or walk. My heart has a beat all its own and my blood pressure is playing a game of “how low can I go.” My body temperature does not regulate well so I’m either swaddled in a heating pad or throwing extra layers on the floor because I can no longer sweat. My anxiety can be my biggest prison. I have good hours and bad hours. Moments where I can walk to the car freely at a good pace, and moments where I cry to John asking, “Is this the point where my life changes and I’m not okay anymore?” Because my arms are too weak to lift wet towels from the dryer and I can’t stand long enough to make dinner so I’ve placed resting stools next to the stove and sink. This has evolved to where I need a cane and sometimes a wheelchair.

This flare-up provided the opportunity for a diagnosis, the comfort of knowing what’s causing this, and connecting with a community who also has this ailment. I have POTS (postural orthostatic tachycardia syndrome), a form of dysautonomia. Basically, my automatic nervous system is not working correctly. Example, when you stand up, your blood vessels automatically contract to keep your blood from pooling in your feet. Mine don’t do that, so my blood pools in my lower extremities. This means that a lot of my body is not getting the blood and oxygen it needs so my heart works extra hard to compensate for this and I become very weak. Another layer to this, I have Hyperadrenergic POTS (Hyper POTS). A form that is usually genetic, comes on slower, and is harder to treat. Some people with dysautonomia are bedridden, some live “normal” lives.

Here’s a video that explains my dysautonomia –

What’s next:

There’s no cure for dysautonomia so they focus on identifying a cause and treating symptoms. We hope this is a flare-up, so at some point it may dwindle and I may regain a lot of what I could do before. I don’t know how long this flare-up will last or how many more are in my future. For treatment, doctors are exploring a combination of medications, diet changes, salt and hydration to increase blood volume, and physical therapy to push me and strengthen my legs.

Silver linings:

Usually (but not always), when I lay down or sit down, I function like a totally normal human being. It’s like I have multiple personalities and my healthy persona resurrects in relaxed positions which is an amazing respite.

I am blessed to work from home and have a job where I can sit all day. What’s more, working is an amazing outlet where I feel normal and useful.

I have brilliant doctors with good souls who care for me and love me through this.

I have an AMAZING husband who has taken over the household chores, holds my hand when I’m so frustrated by what I can’t do, and loves me independently of what I can do to make his life easier (because I’m not helping in this arena right now.) Our marriage is like every other, good seasons and tough ones. This current challenge has strengthened our relationship with kindness and humility. Words can’t express how lovely is his soul.

On days where I can’t do much physically, I can do a ton spiritually. I have a prayer list and I pray for you. Coincidentally, I just joined a healing prayer study through my church. The timing couldn’t be better.

My children are learning to do more around the house and be more independent, selfless, and compassionate. I’m VERY proud of them! But to be honest, parenting while being weak and stationary is hard. I’m figuring this out.

My three best friends, mom, sister, aunts, and cousins are all in the medical field. So, I have the best call-a-nurse/doctor line possible. And they are so much more than that. They are my sanity and some of my greatest loves.

Most importantly, this draws me closer to God. If you know me, you know that I “might” be a perfectionist who likes things to run at optimal performance. Well, I can’t physically make that happen right now. I have zero control- but God has total control. I trust in Him and His plan. If this was all to remind me that God should be the priority in my life, it was worth it.

I want you to know:

I had to think hard as to whether I’d share any of this and have a lot of reservations and even fears about doing so. In the end, I decided what good does it do if I learn from something but don’t share it.

Praise God for what we know and what we don’t. Praise God for love and hope.

Recent Posts:

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

Blessings in your inbox every Sunday

The Blessings of Chronic Illness on Instagram

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

You might be interesred in: