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.