Gossamer Lights in the Evening

Rough night tonight. Didn't realize how much stored trauma I have from the shingles infection from last year. It is still going. I'm in the third flare up since March/April 2025. There is some trauma of just continuing to be haunted by it and not having any doctor managing my care. It is always, "Follow up with primary care" (from the eye specialist) and PC says "Follow up with the eye specialist". It is the Spiderman meme. I've been my shingles care doctor for the last year and a quarter. I'm seeing a new infectious disease doctor in a few weeks so maybe I'll finally have someone managing my care. But most of the trauma that came up tonight is around the PICC line.

I had an IV PICC line in my left arm for about 4 days while I was at the hospital last year. The area was hurting a lot in the month that followed. So I went to the ER to get an ultrasound (I chose ER because I couldn't get an ultrasound appointment for more than a week and I needed to get a second IV line placed the following week. I needed to know what was going on in my arm.). Everything was fine. No clots.

Fast forward to later in 2025, now I'm getting pain at the PICC line site and it is radiating in the front of my bicep an inch or two above the crook of my elbow. It is on and off. Fast forward to 2026. I'm now exercising (weight training) much more than I was in 2025 for obvious reasons. The pain is still there, more intense now, and more frequent. It seems to correlate to intense exercise.

I see my primary care. She orders another ultrasound. It is clear, just like the first. She says if the pain persists, follow up with a vascular specialist. The pain persists. I tell her that. She says I told you go to a vascular specialist. Kinda rude. I know she said that. But she never gave me a referral, she never gave me a name of a practice or doctor to see. Nothing. I asked for one and she just says, vascular specialist, now go away. (not literally but this is what it felt like)

So that's where the trauma is. I've been putting off getting this looked at because it is so transient. And when it intensifies and I ask for help, I'm told, go to this other person who I'm not going to help you find.

I'm so tired of trying to advocate for myself, screaming and yelling (metaphorically) for help and still needing to do so much work to get it.

I still haven't found a vascular specialist.

I'm going to call a number associated with a vascular surgeon I found online at one of the main hospitals in my area. I don't know if they can help or if anyone in their practice can. I guess the best I can do is call the number, ask for an appointment, explain the reason, and see if they can help. If they can't, ask who can.

I'm just so tired of this. I'm tired of being my own doctor and managing my own care because every other doctor I've been too doesn't want to do anything about it. They all say I'm someone else's problem. I'm just kicked from one doctor to the next, each saying the same thing. Each assumes someone else will take charge, but no one does. So I'm in the middle making all the dosing decisions about the anti-viral medication I'm still taking. Probably why I've had 3 flare ups just this year.