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.
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 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!
“For all have sinned and fall short of the glory of God.” (Romans 3:23)
“For the wages of sin is death but the free gift of God is eternal life in Christ Jesus our Lord.” (Romans 6:23)
“But God shows His love for us in that while we were still sinners, Christ died for us.” (Romans 5:8)
[ii] Luke 8: 43-47
2 thoughts on “Journey to a Diagnosis”
Jamie, I am so thankful that now you know you aren’t psycho, and there are physicians on the same page with you. Somehow your search might help someone else, however your faith can help many. What an awesome comparison to such a Biblical truth.
I will continue to pray that the Father will put an absolute ORDER into your life, and guide each step of “do and don’t do” until it is perfect.
Great and amazing things are ahead, and now you know the “rest of the story.”
God bless you and your family. Love y’all.
Jamie, You offered insight and explanation to me living with daily pain for years. I have tried to hide my symptoms to avoid being judged, excluded and deserted by family and friends. You expressed feelings, frustration and sadness at times, I have experienced.
Mine stems from acute back problems which became chronic in my 20s.Of course there are other symptoms manifested because of this.
Presently, I have had 10 lower back surgeries. I know, sounds crazy, unbelievable, plus other related surgeries, neck, shoulder, hip, knee. This is never how I wanted my life to be, but this is the path God planned for me. My focus and daily prayers are not to dwell on what has been taken from me, but to use what is left.
Age, and other contributing factors, have led to a drastic lifestyle change. No longer am I physically not able (only with the strength of the Father) to forge on, my stamina and endurance have taken a drastic downward spiral.
I now spend a lot of time resting. Standing, walking brings unbearable pain.
I feel so guilty.
There have been times in the past all I could do is pray for others. I praise God for my ability to continue to pray for you. and others. I am grateful. May all I do be to the glory of God.
In Christ’s Love,