Recently, I drove 90 minutes round-trip to see a specialist at the University of Pennsylvania Neuroscience Center at Radnor. That was a lot for me. My arms aren’t used to driving that long. It caused burning and muscle pain. The sun hitting my left forearm made it burn even more, due to Complex Regional Pain Syndrome (CRPS) sensitivity. Traffic was heavy. It was stressful. My pain levels were up when I arrived.

I was dysregulated enough that I didn’t realize I had left my phone in the car until I had reached the hospital lobby. I went back to my car and couldn’t find it. I became more stressed as I searched. Eventually, I found it under the seat.

Then I had to go through security. Thankfully, the hospital had texted to say there was now screening for weapons. That reminded me I had a knife in my purse, which, of course, they would’ve confiscated. I’m sure they would have returned it, since I saw them returning other people’s things, but it still would’ve been very triggering for me. A U.S. customs officer sexually assaulted me when I was 14. That kind of authority interaction still hits hard.

After that, I had to check in with two different people. So, just getting to the appointment was a lot of stress. 

But the doctor was wonderful. He was more attentive to my case than most I’ve seen. He’d already read some of my files, even with very short notice. He said, “Last night  I reviewed the patient records for today, and then this morning there was yours all of a sudden.” That’s because I got the appointment only about 14 hours in advance after a notice that someone else had canceled. I’m glad I took it, because it was better to find out sooner rather than later that he couldn’t give me the help I needed.

The specialist felt bad that I’d driven all that way, and he couldn’t offer the treatment I was seeking, SGB with pRFA. It’s the only thing that’s given me more than 2 or 3 months of relief. I need it. But it looks like I can’t get it, as he was my last hope. It’s deeply disappointing. 

The specialist wanted to help me somehow, to make sure I didn’t come for nothing. That mattered. I asked him about muscle tension, but he didn’t say much. That wasn’t a surprise, given the lack of answers from numerous doctors. He said he understood that medications too often didn’t agree with me, but he wanted to mention some less common treatments in case they might be helpful. He asked if I’d considered ketamine or TMS. I told him I’d tried TMS, and it just generated more stress. I said I had too many concerns about ketamine. He understood, especially since there’s no way to predict how someone will respond, positively or badly. I told him I had liked microdosing ketamine a few years ago because it dissolved anxiety immediately, but that I disassociate so much already, I probably shouldn’t use a dissociative drug at high doses.

Then he asked if there was something he could do. I said “Yes.” I told him I’ve studied the neurobiology of pain, trauma, and PTSD for ten years, and Interpersonal Neurobiology for the last six. He said, “I’m sure you know a lot more about it than I do.” Imagine a doctor saying that!

I told him what I’ve learned: that our nervous systems evolved to help ourselves and each other achieve and maintain homeostasis/well-being through safe connection. That empathy and compassion are essential. But they’re hard to find in this country, in this culture. He said, “It’s getting harder.” I said, “Harder every day.”

So I asked him to look at my album of pain paintings. I told him that just looking at them and sharing his responses would probably help. And it did. He took his time. He looked carefully. He made thoughtful, appropriate comments. He said, “Wow, these are great paintings. I like your style. I like what you do.” He was especially interested in the one showing three outlines of the body: one for hypervigilant nervous system pain, one for muscle and fascia dysfunction, and one for arthritis in the spine, hands, and feet. He said, “This is cool. Not that you have it, but it’s a cool image.”

The doctor also gave me good feedback on my painted chart about the IPNB view of chronic pain. His response was so positive, I plan to send him a printout.

Near the end of our visit, the specialist acknowledged my determination and persistence. He said most people wouldn’t have made it this far. And he’s right. It is impressive that I’ve survived. And it’s only because I understood at the neurobiological level.

This doctor saw me. He saw what I’ve lived through. He saw what I’ve done with it. That’s a rare but vital experience.

I also showed him my timeline of my life force and functionality. It showed the steep drops: after I asked for help with complex PTSD and was abused by the mental illness industry; after the predatory gynecologist cut chunks off me without consent; and after the inappropriate bowel resection. He took it in.

And that’s part of why he said he was impressed I’d survived.

Of course, I’m deeply disappointed. I had pinned my hopes on this treatment. Stellate Ganglion Block (SGB) with pulsed Radio Frequency Ablation (pRFA) gave me 8 months of relief twice before, and 4 months even during extreme stress. And the only person who offers it now is a price-gouger, and price-gougers are not safe.

So here I am, desperate for the care I need to survive and function, and I can’t access it. Because this “healthcare system” won’t allow it. 

Part of me wanted to just get drunk and overeat. Instead, I had four beers over five hours. I also felt like I just wanted to die. Quit. Because so many times it would’ve been easier than living this BS life where I can’t get the care I need from the people around me, especially in medicine and psychiatry.

I’m really angry. My pain is worse. But the only thing I can do that’s truly good for me is the same thing I’ve done for the past seven years:

Recommit to my neuroscience-based recovery plan.

Recommit. Recommit. Recommit.

Every time I wobble or backslide, I recommit. That’s how I’ve stayed alive. That’s how I’ve gotten this close to feeling like I might have a life worth living again.

So I made a list. My current plan:

1. Prioritize self-care even more.
2. Get as much community care as possible.
3. Make more art.
4. Speak the truth of my lived experience even more.
5. Keep fighting.

I can’t let lack of access to care set me back. I have to keep building my future instead of drowning in what’s happening now. I need to let myself cry and rant and scream, and then turn that energy into change. For myself and others. That’s the only way to make it stop.

Keep talking about it.

Recommit. Recommit. Recommit.