New Doctors + Fingerprint of God

Every time I write out my medical “resume,” I am aware of the mess my human body is. I am reminded of its brokenness. I am reminded of its awkwardness. I am reminded of how others must negatively perceive me (not that it changes anything, as far as my health goes).

Today, was another one of those “this happens way too often” appointments. For the past few years, I have been on this hunt – to find a primary care doctor. One that won’t run away. One that is loving, knowledgeable, and possesses wonderful bed-side manners without looking down on me for one thing or another. These are the kind of people I like to surround myself with, not just with medical professionals (though it’s sorta mandatory to find these qualities in a primary doctor). Compassionate people who are willing to learn are always a blessing to have, and they make life much easier in the world of one with chronic illnesses.

The more health conditions one acquires, the more difficult this pursuit becomes.

Even though, today was another one of “those days”. God provided, like He always does. God has a tendency to do something to remind me… “You are not alone. You are okay. You will be okay. I am taking care of you.”

As I was walking up to my apartment’s door step, I discovered a new package idly waiting for me. One of my new books came, today. Jesus Always is providing some much needed encouragement tonight (affiliate link).

Looking forward to reading bits of this new devotional book, as I learn how to rest, rest, and yes rest.

“But a chronic difficulty can captivate your mind, taking over increasingly more of your mental activity. Becoming aware of this bondage is a huge step toward breaking free from it (October 10).”

While many things may profoundly affect my life, especially concerning my health, my thought life shouldn’t be affected. I am not talking “brain fog” here. In this, I am reminded that I can choose what I think about. I can choose what is continually on my mind.

I have a heavenly Father who knows my name and every single detail of my life.

I don’t have to settle, in my thought life. I don’t have to agonize day in and day out about what I am “going to do” or how I will “find a way out” of my current health mess. I can choose to allow Jesus Christ to be Lord over my thought life. While my chronic difficulties could take over my thought life, they don’t have to. I have a heavenly Father who knows my name and every detail of my life.

Now, that is something to celebrate. This is why I can have joy, even in the middle of a life afflicted by multiple chronic illnesses. I can choose Jesus and joy in His presence.

Prayerfully, I am seeking Jesus. He is and always has been my ever-present help! And, He still is on His throne holding me.

Until next time,

Stacey

We break down every thought and proud thing that puts itself up against the wisdom of God. We take hold of every thought and make it obey Christ (2 Cor. 10:5, TLV).

** For more encouragement, take a few minutes and read Psalm 139**

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Operation Rest

This week, I have been soo tired! I am talking “cannot keep my eyes open any longer” kind of tired. My level of tiredness, with Dysautonomia is… always interesting. You realize quickly that if your body doesn’t want to cooperate, then, it won’t.

On Friday and Saturday, I was tremendously blessed to be able to visit the church across the street for some of their women’s ministry functions.

… Everyone is very loving.

… They are sweet and show the genuine love of Christ.

It is an absolute God send to be able to go to either functions. They both happen in the morning. Mornings are not my body’s friend. Typically in the morning hours, my body won’t even function. Not until I have had a massive nap. Then, I can move around, walk from room to room, and function well enough to take care of me and perhaps even help others with their needs too.

So, why write this? Good question.

I think we take our autonomic nervous system, for granted. We take for granted, the ability to sit up and stand. We take for granted, the ability to read a book (even a kindle book). We take for granted, a lot of things.

It isn’t until our world of health changes, that we learn the precious gems that these things are.

I don’t know much right now, but I do know that… if my body is literally too tired to keep my eyes open, while reading a short chapter of a book, then it probably needs more rest -from this new week than it received this past week.

While it is always my intention to take care of my body the best I know how to, sometimes I fail. Sometimes, okay a lot of times, my body throws tantrums and I literally have no idea what it needs. It can just sorta feel like I have a crying baby without any true knowledge on what it needs. It’s all guess work… and I have no idea what it wants (or needs).

All I know is that God created my body, so He knows exactly what I need. My comfort, today, is that God gives rest to the weary. God wants to give His people rest. Even those whose bodies act psychotic at times. God still wants to give us rest. God still wants to comfort us. God still makes us His dwelling place, if we choose to follow His Son Jesus Christ and hear His voice.

These past few days have been rough. Imagine being too tired to read your Bible? You want to read it desperately, but your body tells you “no” and that “it isn’t happening.” It can be very discouraging, So, I need to take moments as they come, and uses these things as an opportunity to confide in my Father about my current struggles.

This week, I need to be diligent in resting with Jesus whenever I can. It may not look like it often does, with pen and papers. But, God can satisfy my thirsty soul right where I am. He can meet me right here in the turmoil of chronic illness and exhaustion.

~ Stacey

For I [fully] satisfy the weary soul, and I replenish every languishing and sorrowful person (Jeremiah 31:25).”

My “Must Do” List for POTS Episodes

Originally, I wrote this up Wednesday night. After a few days of letting it sit… If you want a glimpse into how I heal from an episode or why I spend more time than you do resting, keep reading on friend.

I have a long list of questions I want to eventually answer on this page. To kind of help others, to understand what I (and others with chronic illnesses) face. While it is actually not found on my list, I have one of those questions with me tonight.

What do you do, when you are having one of those oh-so-wonderfully-feeling POTS moments?

For our new viewers, let’s remember what POTS stands for.

Postural Orthostatic Tachycardia Syndrome.

This is an autonamic nervous system medical condition, where my heart rate and blood pressure join forces against me – whenever I happen to stand up. Basically in these moments, my body is allergic to gravity (when you find yourself literally allergic to many things, making this joke is fairly effortless).

My “Must-Do” List

For example: What do you, Stacey, do on nights like tonight where your blood pressure is 70/40 upon standing and your heart is beating too fast.

(1) Lay down and get comfortable

When battling issues like these, you have to rest. When you have POTS, you learn quickly that you will spend a lot of time in bed – during an episode. You have to give yourself rest. You can’t expend energy, without first acquiring it, unless you want to really pay for it later. Which is another topic entirely, because I often feel like I don’t have the energy needed and then I do something – and – can pay for it later.

Bottom Line: This is the time, where your body is recovering from your day of living with chronic illnesses.

(2) Elevate legs

This is important, due to the fact that when you stand, blood is pooling to your lower extremities. Which, brings on the blood pressure and heart rate issues. For me, personally, I have a “new” technique I utilize. It seems to help more if I prop up my legs, using a wall. It elevates my legs better, than if I simply use a few pillows or a beanbag. This technique: I just move my pillows out of the way. And, lay down the other direction. It is pretty simple, unless your legs are too tired and weak to cooperate.

(3) Eat regularly

In these moments, I have to forget all the guidelines I want to live by. Like “don’t eat this or that”. I just have to go for whatever works in these moments, well as long as it doesn’t illicit an allergic reaction.

(4) Hydrate. Hydrate. Hydrate

Now granted, this is the “must do” that is a pain. With POTS, I battle lack of energy on a whole ‘nother level. I also have Interstitial Cystitis, so it’s my less favorite treatment. It is also the most needed, of all things I could ever do – excluding bed rest. In order to get better, I have to stay well hydrated.

(5) Offer myself grace

I have to choose to understand that my body is fighting a marathon, while others may be sleeping. I have to put everything else away. My mental “to do list”. My hopes for that day. I have to put everything else on the back burner, until my episode lessens.

It is in these moments my trust in the Most High God is cultivated. God is the One who is getting me through. God is the One who shows me the grace I need to offer myself.

(6) Stay calm, and keep resting

I need things to do, while I complete this list. It isn’t really a “check list” per se, but… pretty important. Other than rest and hydrating, the one I must aim for – is staying calm. It is easy to get stressed out (worsening my episode) or trying to “force my body to cooperate”. So, I try and just keep entertained and calm. My list of things to do, while I stay entertained and calm is a whole another list for another day.

But It’s Wednesday, Lord

I started reading Jesus Calling a few days ago. I leave my copy of this devotional, on the empty spaces of my kitchen table. This way, I can find encouragement the moment I need it.

This morning, I needed its message. It was, in fact, timely. We need to remember our joy is not dependent upon our circumstances. This is a truth that a lot of us don’t live out too well. When we are in muddy circumstances, it is easy to detour from our place of joy. But, our joy is not in our circumstances but in the presence of the Almighty God who makes His dwelling place where we are.

This is needed truth. Because, it would be easy to believe the lie that somehow my set of circumstances needs to be better. . . “in order to praise God..”

In Habukkuk 3:17-19, we find these words.

The fig trees might not bud.
    The vines might not produce any grapes.
The olive crop might fail.
    The fields might not produce any food.
There might not be any sheep in the pens.
    There might not be any cattle in the barns.
But I will still be glad
    because of what the Lord has done.
    God my Savior fills me with joy.

The Lord and King gives me strength.
    He makes my feet like the feet of a deer.
    He helps me walk on the highest places...

In our place of barrenness, we can still praise God.

In situations where we have plenty to complain about, we can make the choice to honor God, seek His face, and praise Him with all we have (and even the things we don’t have)!

. . .

Lord, do you know it is Wednesday?

In hindsight, it seems silly. To ask God (the Creator of the whole world) if He knew that it was Wednesday. You have to understand my world a bit.

I love Jesus. I love His Word. I love His people. Wednesday night service, seems like the obvious. It is my chance to get out of the house and just enjoy Jesus in the presence of other human beings and grow in my faith.

Back to my question – It wasn’t that silly of a question at the time. I woke up at 4am. When I stood up, I began to go through the symptoms of almost passing out. My vision – gone. Ringing in my ears that sound like up-close sprinklers to water the grass. Extremely light-headed. Making standing a fight. I managed to find our couch, before I went down (seriously, thank you Jesus). After a few minutes of letting the agony symptoms of “going to faint” lessen, I went ahead and found my blood pressure monitor.

My body is just awkward, remember?

Laying down, my vitals are pretty much good to go (okay, except for my heart rate almost being too low). Then, for the real test. Getting up and standing, for the investigation. My heart rate skyrocketed to 125 (doubling my heart rate in just a couple seconds), with a lowered blood pressure of 70/40. Mystery solved. It is no wonder my body is having troubles being upright today. It’s no wonder I feel like I am fighting extra hard, today.

Whenever I am reminded what my body fights, I find grace that I can offer to myself. I am reminded that my body is fighting to live a normal life, and isn’t just slacking off – for the heck of it. My body is fighting. It just… isn’t particularly trained for this battle to dissolve at a moment’s notice.

Will I make it to church tonight? Maybe. We just have to wait and see what God decides to do in the next twelve hours. The better question is – “Where will I find my joy today?”

My joy is found in the presence of my God. He is the One spurring me on, and keeping me safe. He is the One keeping me safe, no matter what is going on around me or inside my human body. He is my good good Father!

My choice is to praise God, no matter what I face today. Even if I can’t stand upright today. Even if my face and ears feel like they are being stabbed (good morning, Trigeminal Neuralgia). My goal needs to be on Christ. On His presence… and letting Him take care of me, on this Wednesday.

Seeing God in the Madness

I feel like I am in a sea of emotions and waiting these days. 

My doctor is currently “investigating” something interesting, right now. This means blood tests, that are sent out of state (I highly doubt it’s that interesting, but I am a rare woman of God – so it’s always a possibly that I am that interesting to have my blood sent to another state).

I received a phone call this morning, where they needed to retake a sample of my blood for a test. And, God thoughtfully provided all day!

Every step of the way, was intentionally and masterfully designed by the Creator of the universe.

Today, God paved the way. God’s timing was all over today. And, it was amazing and such a comfort!

Provisions of God

First, the phone call came – while I was still out and about. So, I could immediately just go and get it done. Seconds before that phone call, I was contemplating if my nap could wait the few minutes (or many minutes… one never knows) it would take to grab the results from all three specialized tests. About that time, I decided to go straight home and pick up the results later. Thankfully, the phone call came at the exact time I needed it too.

When we were just getting to the lab, there was very little waiting. I was practically taken right back (okay, maybe ten minutes later). Not only was there little waiting, they weren’t busy (nearly empty waiting room).

I have a thing against closed spaces and lots of people, individually and collectively. And from the moment I walked in, I could just have that peace where God was saying: “Here you are, my beloved daughter. I see your struggles, and I am here to help you through them.”

Secondly, God provided much needed comfort.

  • I was able to text with a local friend, and talk with her about how they needed more blood for a test, but no reason given. She went through a similar thing. So it was a definite “you are not alone,” kind of moment. She was there for me, the moment I needed someone who went through a similar thing.

The Comfort of God’s Word

  • Philippians ch. 1, is another example of our great God provided today. It was again exactly what I needed to hear. God uses our struggles. Our struggles can, in fact, give us opportunities to share the Gospel of Jesus Christ with others. Our attitude in the midst of trials, speak volumes about the peace and joy of Christ – that isn’t dependent upon our circumstances.

Brothers and sisters, here is what I want you to know. What has happened to me has actually helped to spread the good news. One thing has become clear. I am being held by chains because I am a witness for Christ. All the palace guards and everyone else know it. And because I am a prisoner, most of the believers have become bolder in the Lord. They now dare even more to preach the good news without fear (Phil. 1:12-14, NIRV).”

 

These Nights

Some nights, I have tachycardia (fast heart rate).

Some nights, I have bradycardia (slow heart rate).

My name is Stacey, and I have what is called Postural Orthostatic Tachycardia Syndrome. We like to make life a bit easier, by just referring to it as “POTS”.

This is where your autonamic nervous system acts a bit too nervous and awkward for its own good (which fits my personality perfectly, because I can be nervous and awkward quite often). It can affect a variety of involuntary functions your body carries out without your control. Blood pressure, heart rate, and breathing are what makes tonight’s short list. Believe me, these kind of symptoms – leave their impact on the lives of those with POTS.

… In my life, it’s always an adventure to see which I get.


Tonight’s Gratitude

Okay, I shared a bit of tonight’s battle. I have bradycardia. The remedy (or only approach one can use) is – laying down with my legs elevated. This is my situation, but not where my gratitude lies. I do have gratitude. I may have these symptoms tonight, but they are not the end of me. There is even a good chance they could be alleviated by morning, so I can go to the house of the Lord.

I am a child of God.

My identity rests in Him, not my ability to sit or stand up.

I am profoundly loved.

I have God on my side.

In fact, God is the One fighting for me.

I am blessed with people around me.

Thankfully, I have a fairly charged laptop to use – while I elevate my legs and remember the battle I fight.

… And, I do fight.

There is a big “Gospel Fest” tomorrow, that lasts about 6 hours. Phil Wickham is going to be performing. I wanted to try and go. Thought it might ease the depression wall settling in my spirit.

Thankfully, I am in good spirits today. But, it is highly unlikely I will make it to the Gospel Fest. Which doesn’t really bug me like it should (or could). Now if it was Hawk Nelson, that would be a different story.

My Big Blessing

I have a memory to hang onto, on nights like these.

I was tremendously blessed with the opportunity to go to our State Youth Conference last year (amazing, life altering experience!). I am too sick to go this year, even if I did have the funds to go. But, last year – was awesome. I got to see Hawk Nelson in person.

I was well enough to go stand next to the stage, and scream out my lungs to my favorite Hawk Nelson songs.

I was well enough to go running around, with a bunch of youth. Either for a food run or to the convention center for the night’s music and speaker (followed by this incredible room filled with aired up games and all sorts of things – really).

Those are moments I cherish…

I cherish any time I get to spend with the youth of our church.

But, I was only a couple feet away from Hawk Nelson.

… It doesn’t get better than that.

The Birth of Chronically Overcoming

The start-up of this blog and its Instagram was random. I actually set up the Instagram account, literally, on my way to women’s Bible study last night. The need for it, just seemed immediate. Nothing happened, it just hit me how much I needed this corner space in my life – to share about the days of my life with chronic illness.

I have had a specified “chronic illness” blog before, but it didn’t last very long. So, what’s different this time? I feel like it’s just time. I am entering a new season of my life. I have plenty to share. I have plenty I am going through. I have plenty of information and experiences on living with chronic illnesses we have no control over.

While I have plenty to share and all, I don’t necessarily want to do all that sharing on my main blog.

I want to find that balance on how to share.

My “Uh Oh”

Initially, I wanted a secluded place to share about chronic illness.

… but, something funny happened concerning hiding this avenue of my online life.

In all my wonderful brain fog, I set up this new special account – using my main blog where all my local people are. Genius. Right? It was kind of a “whoops” moment. Which left me feeling like, “okay… I am trying to protect the local healthy people in my life from seeing what I have to share about the depths of the chronic illness pit… How do I do this now?”

While there are a good amount of people choosing to follow my new Instagram, the goal of this page has not changed. It still remains intact. It just means stepping out in faith. It is a whole new avenue to help me take off the mask many put on with chronic illness.

Granted, it would be the perfect time to put a halt on it and run away. Yet, here I am. This morning, here I am. I am intrigued by the newness and some freedom given to me by having this particular set of accounts (Instagram//Wordpress). It allows others into the corners of my life, that I won’t necessarily share, otherwise. It allows me to let out a blurb, without trying to make everything sound all wonderful. If I am having a bad day, I can just let it out. I don’t have to worry about losing followers – because this is a chronic illness blog. So, talking about chronic illness is kinda stating the obvious.

I have had a special chronic illness blog before. Perhaps, this time will be different. More profitable. More consistent. Less scared, and more genuine.

Welcome to my world, friends!

Aware of Invisible Illness

Today is day one of Invisible Illness Awareness Week. Honestly, for most of us, every single week is an awareness week.

… For some, more than others.

We are reminded when we wake up first thing in the morning, and our bodies feel tired, sore, our heart’s racing, and maybe even low on energy – all before we get started.

We are reminded when we begin trying to get ourselves up, and our weak back and legs protest such an atrocious thing.

We are reminded again, when our bodies cannot function in the morning hours. Instead of waking up, reading social media, eating breakfast, and beginning our  morning in Bible study and prayer, we are already napping.

We are reminded, when our day doesn’t begin until much later than everyone else’s.

We are reminded, when we can’t think straight – to even remember our own phone numbers.

But then afternoon hits, where we might get a few good hours (free of fatigue) on a good day.

Today was like that, for me.

I was able to go out and enjoy myself. It wasn’t until I got back home – that I was reminded again of my invisible illness(es). For a few hours, I wasn’t plagued with symptoms upon symptoms. I was only bombarded with the thoughts swishing through my head, about my current invisible illness updates, upcoming tests, and yes overcoming them. These are the things I am still processing, internally, while we talk over a warm meal together.

… Invisible illness brings many challenges, but this explains why support from loved ones is of such great importance.

Welcome to my journey of living with and sometimes overcoming… the effects of living with multiple chronic illnesses. I promise you my journey is not all sadness, and there is hope and joy we can find in this circumstance. We just have to keep seeking, so we find these things.