Journey to a Diagnosis

Many of you know that I’ve been dealing with unresolved health issues since that day in January 2015 when I found myself in the school office with numb arms and legs, and an unbelievably high heart rate that left me close to passing out.  These mysterious symptoms and their little friends have continued to peek their ugly heads both inside and outside of my home, giving (almost) everyone around me a glimpse into this illness. It’s been a sanctifying, humbling and humiliating experience for me, which I wrote about in a blog post a couple of years ago (you can read it here). 

If you are someone who hasn’t seen the trailer video for my story on this, I’ll share, not spare, the details just this one time.  I have had to lie on the floor in the middle of a small group study before and miss a few of the same because I didn’t have enough energy to attend.  I’ve had to ask neighbors to graciously come and sit with me on my couch until I felt like I didn’t need to call an ambulance.  I’ve had to call an ambulance two times.  I have visited the emergency room on three different occasions.  I have pulled over numerous times while driving because I could not function properly behind the wheel, dependent on others to drive me home or get me where I needed to go. And l cannot fail to mention the umpteen times that my family has witnessed episode after episode after episode (we gave them this name a long time ago) and come to my rescue with the necessary things to get me through each one.

There’s a detailed list to describe these crazy symptoms and, believe it or not, I found it almost two years ago.  It includes the following:  an inability to stay upright, dizziness, vertigo and fainting, a fast, slow or irregular heartbeat, chest pain, low blood pressure, problems with the gastrointestinal system, nausea, disturbances in the visual field, weakness, breathing difficulties, mood swings, anxiety, fatigue and intolerance to exercise, migraines, tremors, disrupted sleep pattern, frequent urination, temperature regulation problems, concentration and memory problems, poor appetite, and overactive senses, especially when exposed to noise and light.[i] 

Even though my symptoms fit this list to a “T”, by the time I found it, I was so far into the undiagnosed-misdiagnosed-tried-and-tested-this-and-that-plus-everything-under-the-sun-you-might-be-crazy-or-anxious-or-depressed-or-making-this-up-says-the-doctors’-non-verbal-communication-stage that I even questioned the uncanny matching of my experiences with the description of this condition.  The two primary care doctors (second opinions are necessary), the neurologist, the first cardiologist, the internalist, the gastroenterologist, the endocrinologist, the gynecologist (insert a GASP), the rheumatologist, the urologist, and the neurosurgeon never once mentioned dysautonomia, an autonomic nervous system disorder that manifests itself in conditions such as Postural Orthostatic Tachycardia Syndrome.  Despite their lack of recognition of it, this is exactly what I’ve been dealing with.

A procedure on July 3, 2019 confirmed it. My second and most recent cardiologist ordered a test that monitored my symptoms as he and the nurses tilted my body from a lying position to a standing position as I was flat on a table.  Within one and a half minutes I was experiencing symptoms.  The second part of the test was a doozy.  A pill that further provoked symptoms and caused my blood pressure to drop to a whopping 80/39 was given and, of course, at that point I was passed out.  As I lost consciousness, I remember saying, “Guys, I don’t feel well. This is not good.”  I laugh at what that might’ve sounded like, looking back now.

The Parallels

I am so grateful to finally be able to put a name to the condition, but I will never forget what it was like not to know.  To not understand the source of my health issues. To not be able to do anything about them. Like the woman in the Book of Luke who had “spent all of her livelihood on physicians and could not be healed by any”, I found myself coming to Jesus “trembling; and falling down before Him”[ii] begging for something to change, for some answers, for healing.

The entire journey that I’ve been on reminds me so much of my life before I became a Christian.  I had unresolved sin that had never been diagnosed.  And, without a diagnosis, of course, there was no way to treat it.  The similarities are something I’ve been eagerly waiting to share.

The symptoms.  Day to day life is affected when a condition like mine takes over.  The source (POTS) manifests itself in symptoms that permeate my everyday functioning.  The effects of sin are the same.  Nothing goes untouched when we have undiagnosed sin.  We are weighed down and do not even realize it because sin’s symptoms are always present and debilitating.

The searching.  Not knowing what was wrong with me provoked an unhealthy attempt to search elsewhere for my needs. I looked for the next bit of information or the next doctor to finally give me what I so desperately desired—a name for my condition.  Sin prompts the same process.  We search tirelessly for the next person to please us, the next life-event to excite us or the next opportunity to offer us hope for our life circumstances.

The lack of fulfillment.  Un-diagnosis is like a hole that cannot be occupied until just the right substance is put in the empty space.  For me, it was a puzzle without the one piece to complete the entire picture.  Sin leaves a gap in the same way.  It separates us from God and consequently, because we were created for a relationship with Him, nothing else can fill that void.  We are left unfulfilled, frustrated and discontent.

This medical mystery journey that I have been on has also brought an indescribable loneliness.  There’s been too many ups and downs to try to explain in a blog post.  And admittedly, I’ve had numerous seasons of questioning; questioning everything from my sanity to my faith.  I can unequivocally share that my life before a recognition of my status as a helpless sinner before a holy God. . . it was the same. 

The Treatment

The dysautonomia diagnosis is what I’ve, what we’ve (my family and friends), have been praying for.  Now we can address the symptoms and hopefully help my autonomic nervous system function the way God designed it to.  It is a crucial discovery that will guide us to the next step. 

The treatment for POTS is a delicate balance.  I must have extra fluids to keep my body hydrated but too much water without enough extra salt can be harmful because salt keeps my blood pressure up.  I’m also sensitive to certain medicines so I must work with my doctors on exactly what and how much to take.  Exercise improves my cardiovascular functioning but, at the same time, can cause an onset of unwanted symptoms if I exert myself too much or in the wrong way. 

The treatment for sin is anything but a delicate balance!  In fact, it’s not a balance at all.  We cannot add a little bit of this behavior or that good deed to even the scales. We can’t look to the advice of others and we can’t strengthen ourselves with brisk walks around town.  There truly is nothing we can do except turn to Jesus Christ and accept what He has done on our behalf, which was both take away our unrighteousness and give us His own righteousness.  There is nothing delicate or mild or gentle about that, by the way. It is the cure of a strong and steady Jesus that ultimately, treats my sin and your sin and gives us the healing that we so desperately long for.

My symptoms have been examined.  My condition has been identified.  I am a sinner saved by grace, through faith.  I know that the Remedy has treated my sin and healed me of it for eternity.

Then the woman, seeing that she could not go unnoticed, came trembling and fell at his feet. In the presence of all the people, she told why she had touched him and how she had been instantly healed. Then he said to her, “Daughter, your faith has healed you. Go in peace.” (Luke Chapter 8: 47-48).

Oh, what a glorious thing it is to know what is wrong and to be able to look to the One who can fix it!

My POTS and the Potter

Today’s Takeaway: The comfort of knowing that God Almighty is in loving control of our lives gives us strength when the days of chronic illness get tough.

It’s a POTS kind of day. My body is just not working right. A truth that speaks to many of us as we get older and to those of us who struggle with health issues is this:  Physical ailments aim to get the best of us on our worst days. Today is one of those days for me.

Romans 9:20-21 “But who are you, O man, to answer back to God? Will what is molded say to its molder, “Why have you made me like this?” Has the potter no right over the clay, to make out of the same lump one vessel for honorable use and another for dishonorable use?”

I am oftentimes reminded of this verse when I’m frustrated and struggling with symptoms.  It begins with a few strong words in the form of a question:  Who are you, O man?  That’s fairly self-explanatory.  Answer back to God in so many words means talk back to Him.  Will what is molded (oh ya—that’s me) say to the One who molds me, Why have you made me like this?  Well, actually, I have been known to ask that very question.  In my weakness, I struggle to know why.

I am beginning, however, to ask that question and similar ones, less and less.  I’m finding that it’s just not necessary anymore.  When I, the molded, rest in the fact that He is the Molder, there’s no need to ask questions. No need to talk back. By the way, I’m an excellent talker-backer.  I talk back to my husband from time to time.  It feels good in the moment but not so great later when we’re trying to pick up the pieces from an argument. The same is true with my Potter but on a greater level—the pieces that will need to be picked up after such an incident are my trust, my devotion, my peace, my focus.  It’s not worth it.  The bottom line is that I do not need question the One who has made me.

Now to some reading this, that sounds a tad bit on the legalistic side.  That I would just do what I’m told to do by a big boss in the sky who is letting me suffer physically.  To those persons—I would say, you might have missed one key word from my comments thus far. . . rest.

There’s more to that word and what it has meant to me over the course of my journey with illness than I can accurately express on paper.  But I will try—using it in the context of this verse, which gives us such amazing imagery about the one who is being molded and the molder.  It’s a beautiful picture of clay, which is soft and amenable, able to be formed.

Clay is a picture of rest.  It is a posture, a stance that yields.  That conforms. The clay is sensitive to every move and every touch of the Potter because of who the Potter is, He is the One in control.  Oh—the Potter!  He holds, he works, he forms, he tightens his grip and loosens it as needed, but he never stops molding. Thank goodness, He never stops molding.  He is faithful.  He is true.  He is good. And He is enough.

So we, as the clay, yield ourselves into His careful Hands.  And when we find ourselves questioning, we yield again.  And again.  And again.  And again and again and again.  Until we enter a season when the questions are few and far between because the molder has proved Himself to be the precious Potter who, indeed, is making something far more beautiful out of the clay than the clay could have possibly made out of itself.

Today, I am happy to be clay in the Hands of my Father, the Potter.

“But now, O LORD, you are our Father; we are the clay, and you are our potter; we are the work of your hand.”  Isaiah 64:8

*POTS stands for Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia. For more information and to spread awareness, see this video published by Dysautonomia International.

Be Okay with the Gray

May 17, 2023

Today’s Takeaway: Acknowledging that there will be questions in your journey and then working through the gray on a daily basis are key to embracing the peace that God truly has to offer you in the middle of your chronic illness.

Due to the complex nature of our symptoms and our diagnoses, those of us who struggle with chronic illness typically have a long, running list of doctors that we have seen in the past or that we see regularly. My list currently includes six active physicians and a host of others that were crossed off at some point because they just weren’t listening or working on my behalf, or because they wanted to throw a bunch of pills at me without figuring out what was actually going on in my body.  Some were absolutely content with the fact that their particular training, which in my opinion kept their thinking inside the box of their specialty, was not answering the big questions that were plaguing my physical health on a daily basis.

Big questions on the journey of chronic illness are a big deal.  They come from those doctor’s appointments and test results, of course, but they also come from the ins and outs of our everyday life.  Big questions actually—believe it or not, if you have just started your journey– become the norm.  It has taken me a terribly long time to learn this.  I am a self-professed black and white thinker; however, autoimmune issues, mysterious symptoms and undiagnosed conditions over the years have helped me to accept that there is so much gray.   My ability to understand, acknowledge and accept that the gray is probably here to stay has been key to, only so far as it has merged with my Christian faith, being able to cope with my illness.

As we flesh this out today and unpack our big takeaway, I want to discuss the different types of question marks that encompass this journey called chronic illness.

First, question marks can come in the form of mis- and un-diagnosed conditions.  In the beginning of my journey, when I was in my early thirties and my health issues first started to surface, the idea that I would have question marks left unanswered after seeing the doctor was foreign to me.  Physicians knew how to heal and how to fix, therefore my expectations were high.   Testing was performed, all appeared to be well except for a minor diagnosis that could be treated with an antibiotic.  My initial symptoms persisted and then the first big question came. . . Did they really know what was going on with me?  It was the first of many, many visits with many other physicians that would prove to only lead me with more—you guessed it—question marks.  I am grateful for modern medicine and the physicians who administer it, but the reality is that there is still much that many do not know or understand. 

Second, question marks come in the form of concern about and management of everyday symptoms.  Let me just say right off that for many of us, this can oftentimes lead to anxiety, anger and frustration, and a sense of helplessness.  With chronic illness, you may wake up every single day with big question marks that sound like the following:  Am I going to feel terrible today?  Will I have episodes of my condition today?  How bad will my symptoms be?  What can I do to ward off symptoms today?  Did I eat something/do something yesterday to exacerbate my illness today?  What will I be able/not be able to do today?  In addition to those more general uncertainties, there are many that are specific to situations that may arise in your personal journey.  For example, when your condition has been bad enough to constitute an emergency visit, you may wake up every day for a period time asking yourself, will I have to go to the ER again today?  When you are waiting for tests to be taken or results to be released, you may ask yourself, are the underlying answers just a nurse’s phone call away?  When the diagnosis is one that is not widely known, you may ask yourself, who will I ask for advice, and will my loved ones even believe/understand me?  The list of questions truly goes on and on as does the emotional and mental strain that accompanies them.  It can be and oftentimes, is, exhausting.

The last set of question marks that we will discuss today, although definitely not the last of the inexhaustive list that we deal with every day, revolve around our response to all of the above.  They sound like this:  How am I going to deal with my symptoms today?  What will I do to cope with my condition? Do I think I will be able to get through another week, month, or year like this?  HOW am I going to get through another week, month or year living with this chronic illness? I understand, dear friends, that these are deep and somewhat disturbing questions to read; however, they are reflective of sincere concerns sufferers have.  What we need to notice about these particular questions is that we are asking them either consciously or subconsciously.  In other words, our chronic illness has to be dealt with one way or the other.  If we fail to actively acknowledge these big questions, then we could find ourselves in a mental state of denial and/or a physical state of fight or flight survival mode that only exacerbates our condition.  Trust me, it’s better to put this group of questions directly to the table with a proactive act of acknowledgment and subsequent response.

Here’s what that might look like for you.  Chronic illness is presently a part of your journey, its symptoms are affecting you and the uncertainties surrounding it are a reality. Chin up!  There’s a second reality that you can embrace.   It’s that the gray is okay.  What?!?  I know, this sounds impossible.  But it is possible with the third reality:  that Christians suffering in and through chronic illness have all they need to cope with the unknown and to be okay with the gray.  Faith in who God is, how He is working in your journey and what He’s going to accomplish because of it is yours for the taking.  The coping comes in the hoping!   Peace in the middle of your storm is possible.  And it is possible every single day. I know this because God’s Word says it is. 

There’s more we could talk about but for today, I will leave you with (guess what?) a set of questions.  Take note, however, that these questions are the kind that can point you toward that place of coping and ultimately, to a place of real hope.  P.S. Starting a journal would be a fabulous first step!

  • When you dig deep and get the heart of your thoughts/feelings/perspectives about your personal experience with chronic illness, what do you find?  Include the good, the bad, the pretty and the ugly. It may be helpful to use one-word descriptors or short phrases in your responses.
  • What do you do typically do with those responses?  Do you honestly acknowledge them?  Stuff them?  Give them over to God in prayer?  What could you do differently?
  • What do you know about God’s character as shown in the Bible?  Reflect on His attributes.  How do you merge His attributes with your chronic illness experiences?  With your unknowns/your big questions?

Our chronic illnesses may seem like a never-ending path of big questions. But be encouraged by this truth: that in the middle of the gray, you can be okay.  I can be okay. We can be okay. When we place our illness and all of the unknowns in the loving, comforting, healing hands of God, we can and will experience His peace as we persevere through, one day at a time.

2 Corinthians 5: 7, “For we walk by faith, not by sight.”

Become an Investigator

March 2024

Big Takeaway: You have the ability to become more aware of the connections between your personal symptoms and the potential triggering factors behind them.

There’s one word that describes the last five or six weeks:  flare. My small fiber neuropathy has been causing more pain and numbness than usual.  Most days have been manageable but on Wednesday my symptoms went into overdrive, and it was all I could do to get through the morning.  Every single movement caused muscle pain, and every drop of the pin around me caused a burning, tingling sensation all throughout my body. The day was long, frustrating, and barely bearable. But the next day was better.  I thank the Lord for the strength and grit He provided me!

If you’ve been diagnosed with a chronic illness or autoimmune disease, you can relate to having good days and bad days. Good seasons and bad seasons.  But do you know that you don’t have to be side-swiped with every ebb and flow of your symptoms?  That you can, oftentimes, learn to predict or at least partially see your flares or your difficult days coming on?  Here’s a bit more of my story. . .

Spring and fall.  After a few years in a row of severe episodes that led me to the ER (this began about eight years ago), I took notice that these trips were always in early November and late spring. This was before my SFN diagnosis, but after the POTS diagnosis (POTS still wouldn’t explain the nature and severity of these trips and I’d always leave without any real answers).  It actually occurred to me after having large medical bills to pay about every six months—and when I looked at the dates of my trips– that my symptoms were more severe in the fall and spring seasons. 

Certain foods.  This is a whole blog in itself,  but I’ll just suffice to say that after (literally) 15 years of learning what my body can and cannot handle with food, I am finally very confident that I have that part of the puzzle figured out. I have to limit the types of foods that I eat, and I know which ones trigger my symptoms. Example: I ate packaged cookies last night and woke up this morning with a headache.  It’s a price I am paying and with these illnesses, there are transactions and trade-offs that you learn to be aware of and make choices about—but that, again, is yet another topic for another post!

For now, I want to get to our take-away for today.  You have a choice to be a bystander to what is happening to you OR you can become an investigator.  To be an investigator, you have to become more aware.  No, we can’t control everything or even close to everything about our illnesses, but there are things we can do! Here are a few that I hope will be helpful for you:

  • You can learn the known triggers of your symptoms by simply reading about your condition and staying up to date on the research. You have many that are unique to your own body, however, there are many others that are well-known to your specific condition. (I am amazed that many migraineurs still don’t know that wine and chocolate are major triggers!)
  • You can start making mental notes and yes, even taking actual notes in a journal or notepad.  They even have apps for this. Record when symptoms occurred and what factors may have contributed to them.  Think about foods you ate, activities you did, stress levels, etc. 
  • You can join a Facebook group specific to your diagnosis.  Most of these are designed to provide encouragement as well as information about varying treatments (I love the functional medical tid-bits I get from the groups I’m in!), however, they are also great for learning what might be contributing to your symptoms because you can read so much about other people’s experiences.

I know, learning about your symptoms and what might be triggering them–it feels like a guessing game.  Especially at first. And it takes patience and time. Isn’t that what an investigation takes, though?  You sort through a ton of information until you find substantial clues that end up coming together to solve the case. Not that I am suggesting yours or my case will ever be solved—I’ve prayed that prayer a thousand times and somewhat like the apostle Paul, decided that the Lord has given me thorns in my flesh to remind me of my need for His grace over my weaknesses.

Becoming more aware is a big step—but it is one of the first steps we can take that can potentially bring us a substantial win!  If I can anticipate a difficult day or season that might be coming in my near future, then I can prepare myself to better handle what I might have to experience with my illness. Or if I can avoid a surge of symptoms by not opening up those strawberry crème-filled off-brand Oreos from Wal-Mart (who even thought of such yumminess anyway?), then truly,  my knowledge has given me choice and a sense of control. It is worth the effort to me. My challenge to you, then,  is to consider becoming that investigator of your condition.  The reasoning is simple: personal awareness can and will serve you well as you navigate on your journey of chronic illness.