New year is coming in strong… and not in the cute, glittery way people post about. We went to bed minutes after midnight. The house was quiet, the kind of quiet that’s supposed to feel like a fresh start. And then I woke up at 2:30am… wide awake… scratching.
Not a normal itch. Not dry skin. Not “maybe I changed detergents.” I mean uncontrollable itch… from my head to my toes… like my entire body is crawling under my skin. It’s the kind of itch that doesn’t have a single spot you can point to. It’s everywhere, all at once, and it makes you feel desperate. Like if you could just scratch hard enough, you could climb out of your own skin and breathe again.
This is what people don’t understand about dysautonomia flares. It’s not always the obvious stuff like heart rate or dizziness. Sometimes it’s your body turning basic sensations into alarms. The autonomic nervous system is supposed to regulate things quietly in the background… blood flow, temperature, sweat response, skin reactions. When it’s unstable, the body can misfire in weird ways. And itching can be one of those misfires… your nerves screaming “something is wrong” even when there isn’t a simple answer you can fix with lotion or a nap.
And then there’s the tape.
Even the single, only kind of paper medical tape my body can handle has me raw today. Blisters. Redness. That hot, stinging feeling that makes you want to cry because it’s so unfair. I can handle a lot… but my skin is acting like everything that touches it is a threat. It’s like my body is offended by the world. Like it’s tired of being poked, pulled, held together, asked to cooperate… and it’s responding by revolting over something as small as tape. This is my body responding like it’s on high alert.
But honestly… the price I’m paying for yesterday is intense.
My side hurts so incredibly bad. That deep, sharp, unforgiving pain that doesn’t just sit in one spot… it takes over my whole body because it changes how I breathe, how I move, how I exist in my own skin. The sharpness isn’t going away. It’s not intermittent. It’s constant. It’s the kind of pain that makes you stop mid-step and stare at the wall like you forgot what you were doing because your body just hijacked everything.
And yesterday, my PCP called me… literally as I was about to get in the shower. Hair up, towel on, trying to be a normal human for ten minutes. He said he’s still “scratching his head”… and then he told me he’s sending me back to the original source… the trauma surgeon who did my major open abdominal surgery in May.
I instantly got tears in my eyes.
Because I’ve already seen them about this pain twice in the last six months… and both times they referred me back to my PCP. Like a loop I can’t get out of. Like I’m just a file getting passed around because nobody wants to be the one to claim it.
But my PCP is agreeing with me on the one thing that matters most… I never had this left flank pain before the surgery. At all. Not even a hint of it. Not intermittent. Not mild. Not “sometimes.” It simply did not exist in my life until after May. And now it’s constant, sharp, and loud enough to take my breath away.
So something happened during or as a result of that surgery to cause this. I don’t know if it’s scar tissue, nerve entrapment, adhesions, something vascular, something structural, something nobody can see yet… but I know the timeline. I know what my body felt like before… and what it has felt like ever since. That difference matters. He hears me. He believes the timeline matters. And he’s ordering a repeat CT… hoping maybe… maybe… it’ll show something more. Hoping there will be something concrete, something visible, something that finally connects the dots and gives us a direction instead of another dead end.
Today hurts so bad I finally had to give up and tell my husband I had to go lay down in bed. That sentence always feels like surrender, even when I know it isn’t. It’s just reality. I can only push so far before my body forces me to stop. So I’m here… in bed… trying to be still, trying to breathe through it, trying not to spiral into that familiar place where pain turns into fear and fear turns into grief.
So far, relief still hasn’t come… but I pray it will come soon.
I don’t have a tidy ending today. I don’t have a lesson wrapped in a bow. I have itch. I have raw skin. I have side pain that won’t let up. I have the mental battle of trying not to panic when symptoms feel this out of control. And I have prayers… the simple kind… whispered through clenched teeth.
Lord, please let my body calm down. Please let my skin stop screaming. Please let this pain ease. Just give me enough strength for today… for this hour… for the next breath.
