An Anniversary of Questions.

140401c Sunset Through the Bamboo

June has come back around.

It has been a year since I quite suddenly became unwell.

I remember the night that it started – a Friday night – wide awake half the night, my lungs overcome with pain and feeling like they’d been deflated, my head dizzy and full of pressure, my heart beating faster than a Shakira song and my mind petrified about what could make me feel so wrong. The next night, I slept sitting up because every time I laid flat I thought I was going to die.

On Sunday I went to the Doc in the Box, positive that whatever was making me feel this near-death would be immediately evident to whatever doctor drew the short straw of the Sunday afternoon shift.

How nice that would have been.

It took four agonizingly slow months, six doctors, and a dozen tests to get a diagnosis of exclusion – a diagnosis that says “We acknowledge that you are sick. We see the problem. However, we have no idea what is causing it. Here – take some pills to control the symptoms.”

The diagnosis was Dysautonomia, and the drugs were beta blockers, designed to make my heart slow down. Those pills have been a blessing and a curse. A blessing that they have helped with most of the symptoms many days, and a curse for their side effects (hello exhaustion, hair loss and weight gain.) But I realize exactly how valuable they are when I forget to take one, become nearly (or literally) bedridden, and am reminded how very, very sick I still am – and that I’m just masking a mysterious behemoth. I’m in the process of trying to completely change medication types right now, hoping to find a way to have more good days than bad.


All of the initial tests gave me a way to write about what was going on without being too serious, but the last six months have been difficult to spin. I’ve written half a dozen update posts since, but have published none of them. They contained the long, painful details of the process, the symptoms, the feelings, the side effects, the frustrations. But every time I started to re-read a post for editing, they felt so arduous that I couldn’t make it through them again, so I certainly couldn’t subject anyone else to them.

But that’s the problem. Writing is often grueling now. Getting thoughts to form and being able to write them out is impossible at times – and it’s made worse when I go back and comparatively read my writing from over a year ago. I think to myself, “I was so much better. Will it come back? Will thoughts come easily again?” Your kind words and support have meant infinitely more to me in the past year.


I’ve spent nearly a year being convinced that there is an underlying cause for my illness – if only we’d look a little deeper, do a little more research, run one more test. Could it be my head injury? The bats and their guano?  One of a million rare syndromes? And as more problems surfaced and issues were diagnosed – my compromised immune system, my eye issues, and so on, my hope deepened – surely the more ingredients there were to add to my Dysautonomia, the greater the chances were that when mixed together just right, they would present a solution.

But neither that Doc in the Box nor the eleven other specialists I’ve seen since can find it.

One even stared at me, troubled, for a whole two minutes. Then said, “Please come back in six weeks and tell me what you’ve figured out. I don’t want to lose track of you.”

But after the last round of tests that took over three months, a few hundred dollars, and zero helpful takeaways, I feel done. It’s time to accept the fact that I may have a chronic illness that can only be controlled, not eradicated. And even the control is partial at best and completely unpredictable.

That realization has been difficult for me to swallow. I’m a fairly unemotional person, but trying to work through the reality that the past year may be a preview of the rest of my life has brought out tears, anger, and sadness. But also, a seeking of God’s promises and comfort like I haven’t needed to do in a long time.

I hang out in the Psalms a lot – David’s raw emotions and honesty with God and God’s responses to it have always been a comfort to me. Another reassurance came through 1 Peter 5:6-7…Humble yourselves, therefore, under God’s Mighty Hand, that he may lift you up in due time. Cast all your anxiety on Him because He cares for you.

Other times when I’ve read that passage it felt very forceful. Get yourself humble, to the ground and under God’s hand!!, but now it feels safe. I am under God’s Mighty Hand. I know I am – I have personally experienced Him in miraculous ways that prove to me without a shadow of a doubt that He is there and He cares for me – personally – and even by name.

So where else would I rather be?

Where I am is where He has me right now. What I am dealing with is what He wants me to be dealing with right now. And He has already blessed it by using the fruit of my trials to help others. I don’t think He expects me to live every moment of it with a skipping blissfulness (He knows me too well for that), but He does know what He is doing.

And I can trust that even if I continue having no idea what is wrong with me or how to get better, He has me under His hand.

And those are sustaining words. As long as I go back to them regularly.

Notice Where You Are.

Lately, photos have come more easily than words.

Birmingham In the Fog

I’ve caught myself eyeing every turn, every sky, looking to capture something magnificent.

Sunset under the bridge and over Sloss Furnaces, Birmingham Alabama
…And then still end up surprised when magnificence is everywhere I look.


Those stunning sights have always been around me, but it took this summer to seriously look up from my life and see them. And I took it on as a challenge – an adventure.

A Rorschach Test between sky and water, Helena Alabama

And yes, perhaps I’ve become a little obsessed with catching the sun just so, the shadows ever lengthening…

Sunset through the bridge, Nashville Tennessee

The city in a new and shocking angle…

Sunset Vulcan Downtown Fall Colors

But the thrill that comes from capturing an image that says so much without having to utter a single word is inescapably addictive.

Birmingham, Alabama Sunset

And watching the painting of a constantly morphing but ever more beautiful portrait is deeply moving.

Birmingham Dusk

This year has been a journey for me.

Railroad Park Tunnel Lights Installation, Birmingham Alabama

A journey not of my choosing, but one in which I am confident that God is absolutely in control of the start, the stop, and the long in-between.

Train Tracks, Downtown Birmingham Alabama

There have been small glimpses of promise throughout the trip – that I am still in His hands, and clearly in His care.

My Shadow in a Rainbow over Atlanta, Georgia

And the sights that He’s led me to notice – the ones I’ve never paid attention to before – have been a thundering part of that reassurance.


And though on some days it feels as if I can just barely see the sun,

Sunset over Birmingham, Alabama

It’s always right there – just beyond the clouds and waiting to burst forth in a glorious day.

Sunset over Birmingham, Alabama

And so I find myself, constantly chasing that mesmerizing sun,


Because here is always peace there,

And I take great comfort in that.

Birmingham, Alabama Skyline

And the glory of capturing something beyond myself reminds me of how much God has in His care, and how little my problems really are.


And that is good enough for me.

Birmingham, Alabama Sunset

And thanks to my husband and a fleet of tiny nails, I now have that reminder even when I’m at home.


Good thing we have plenty of walls in our house. Because I’m not quitting.


Where I’ve Been This Summer.

Birmingham and I

My symptoms first started in June. For a couple of nights in a row, when laid down to go to sleep, I had chest pain, pressure that felt like my lungs were collapsing, and a lot of trouble breathing. Naturally, these symptoms also kept me from sleeping well. I first went to the Doc in the Box, who told me I might be dying but he couldn’t do anything about it because it was Sunday, after all. I foolishly returned to that same DitB three days later, but saw a different doctor, who diagnosed me with asthma, based solely on the fact that I couldn’t breathe as hard as I should be able to.

Like a good little patient, I got an inhaler and began using it. Not so helpful.

A couple of days later, my original symptoms had gotten worse, and added to them were two instances of blacking out, not really a great hobby to frequent when home alone with two children who are small and/or self-absorbed enough to be completely disinterested in the fact that their mother went from standing to crumpled.

A few days later, I was able to get an appointment with a specialist at a very highly regarded clinic here in town. Over several long weeks, they tested me for pulmonary problems and heart failure, along with a variety of blood tests, but everything came back normal except for a jumpy and at times abnormally high pulse.

During that time period, I had good days and bad. I had a minor wreck, most likely caused by the growing disorientation that I was experiencing. I added to my symptoms panic attacks (but only in my sleep, creatively enough), and had a couple of hallucinations, where things that weren’t moving all of a sudden were. There was a lot of head pressure and pain, and my difficulty breathing and lightheadedness grew worse.

But the worst part was my rapidly decreasing ability to process life. Chris would mention a friend’s name and I would have zero idea who he was talking about. Writing became excruciatingly painful, and my creative spigot slowed to a trickle. I couldn’t make myself do fun things with the kids, because I didn’t have the energy or the ability to interact in chaotic situations.

Thankfully, one of my best friends suggested that I look into Dysautonomia – her sister-in-law had it, and my symptoms sounded identical. I reluctantly Googled my health (something I had desperately been trying to avoid), and was shocked. It explained every single different thing I was feeling, including even the eye problems and anxiety I had struggled with at the beginning of the summer.


A week later, another friend mentioned her own Dysautonomia on Facebook. So I messaged and quizzed her relentlessly about her symptoms. Again, identical.

From what I gathered, Dysautonomia is a nervous system disorder (and therefore can affect many systems at once as I was experiencing), and one of its main physical markers is the inability of the heart to react to changes in gravity (laying, sitting, standing), made apparent by low blood pressure and high pulse upon change. So I bought a blood pressure cuff and began tracking for myself.

On the days when I didn’t feel good, my blood pressure would be super low (90/50), and on the days where I felt fine, it would be normal (110/70).

I started tracking this a week before my next appointment and reported the findings to my doctors. Autonomic issues had also been on their possibility list, so they gave me a simple test: lay down, take my blood pressure, stay laying down for five minutes, then stand up, immediately taking my blood pressure again. I had an “autonomic response,” meaning that my body did not adapt, and my pulse increased to try to keep my blood flowing.

For the next couple of mornings, I tested myself when I woke up. I’d take my blood pressure while laying down, then again when I stood up (slowly, so I didn’t black out.) My resting pulse was already high (70+), but it would still nearly double every time (120-135) just from standing up.

All of the head pressure and constantly feeling faint made so much more sense.

My doctors currently have me in the testing process to determine if another disease is causing my autonomic issues, or if it is Dysautonomia itself.

I haven’t started deeply researching Dysautonomia yet, but that’s next on my list. I’m equally surprised by how many women that I know have Dysautonomia and how many people have never heard of it. But what I do know is that Dysautonomia can be completely livable or crippling – there’s no way to tell, and there’s no cure. If it’s bad enough, there are heavy medications to try and help make the symptoms better, but my body responds very poorly to almost all prescription medications, so I will be avoiding that if possible.

There are, thankfully, a lot of lifestyle changes that can really help: lessening caffeine, cutting out artificial sugars, drinking ridiculous amounts of water, giving up things that make you lose salt and water (such as carbonated drinks), and getting a lot of rest. I’m doing all of these, and also quickly realizing and avoiding the triggers that make my cognitive symptoms worse.

I’m still having days where I feel normal and days that I can barely function, and mostly days that fall in between those two extremes. On the bad days, drinking even more water and taking Sudafed (to raise my blood pressure) helps sometimes. But on most days, it’s taking me twice as long to accomplish things (especially writing and all that goes with it.) Additionally, Ali and I will be starting school next week, and I am praying that I have the energy and presence of mind to teach her diligently.

I’m in a very uncertain stage as to what this all means. I hope and pray that in a few months, I can say that I’ve figured out what works for me and that my symptoms are completely under control. But until then, I might move at a slightly slower pace than usual.

An update can be found here.