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

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 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.

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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

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

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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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

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

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


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


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

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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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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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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

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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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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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.


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

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

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

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

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

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

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

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

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

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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.

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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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