As promised, I’m once again logging back on to give an update of how I fared with surgery given my post-PANS PTSD.
In case you missed it, make sure you read Part 1. Otherwise, this post won’t be quite as meaningful.
The night after I wrote my last post, I must have slept for about twenty minutes. I didn’t get to bed until 1:45, and not even 100 mg of Seroquel was enough to stop the anxiety that kept me awake. All I could think about were all of the PTSD triggers I was about to encounter. I can’t do it, I thought to myself.
But one of my favorite quotes says:
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.”-Eleanor Roosevelt
And that’s exactly what I did a few hours later.
“Do the thing you think you cannot do” epitomizes my whole journey with PANS.
Before I was diagnosed, I did Exposure-Response Prevention therapy for my OCD (PANS’ main symptom). This meant staring fear in the face over and over again. It was the hardest thing I’ve ever done, but in the end, I was completely freed from the fear of my intrusive thoughts. I didn’t think I could do it, but somehow I did it anyway.
At other times, PANS made me afraid of everything—that’s one of many unfortunate side-effects of the brain’s fight-or-flight center being inflamed and malfunctioning. It meant living in constant terror, and doing anything required facing fear head-on. After all, there’s not much to relieve your fear when you don’t even know what you’re afraid of… other than the treatments that stop the disease.
Then, those interventions themselves could feel beyond frightening at the time: having a spinal tap, getting a blood product called IVIG, wiping out all of my B cells with Rituxan and becoming immune-compromised, going to intensive outpatient and then partial hospitalization for eating disorders, and having a tonsillectomy when everyone said it would be extremely painful as an adult (spoiler alert: it wasn’t).
This was all made worse by how much I didn’t want to do any of it…
In my mind, these were all things done to me and not for me, because I didn’t choose to have PANS.
I only chose to do these treatments I feared in the hope of getting well enough to do more things I did want to do.
To be completely honest, sometimes it didn’t even feel like I was choosing the PANS treatments that I did. Although no one ever forced or coerced me into anything, the graveness of PANS itself made everything feel like a “do this or else” situation. I was sick enough that death was sometimes not off the table if I didn’t go through with treatment.
It’s no wonder my default mindset with healthcare is anxiety.
I spent so many years consuming it as if a gun were to my head. I think a lot of people who have survived serious illnesses end up feeling the same way. It’s hard for the nervous system to unlearn that things aren’t dire just because you’re at a hospital or seeing a new doctor.
Indeed, this week, the circumstances were entirely different. My brain, and by extension my whole life, didn’t depend on having surgery. I was the one who decided to consult with this surgeon in the first place, and I was the one who took the initiative to go through with surgery. The whole process was 100% a decision I made for myself with the sole intention of benefiting my life through improving function and reducing pain.
When all was said and done, I panicked only one time at the hospital.
I had shown up with my port accessed, so they were able to use it rather than a peripheral IV, thus staving off inevitable, severe trauma responses. (I haven’t had any IVs since I got my port in 2018.) Unfortunately, they almost got another triggering needle involved…
I panicked when the anesthesiology resident hadn’t communicated with my surgeon about which kind of nerve block I needed. Having a block done in my arm while fully conscious would have no doubt sent me into full-blown flashbacks due to the similarity with getting an IV. I know this because I completely lost it two years ago when attempting allergy testing on my forearm triggered forty minutes of full-body tremors and more…
The fear of a trauma response happening was why I started to panic this time (not fear of the needle in itself). I was on the verge of running out of the pre-op room, but the aforementioned Seroquel and sleep deprivation, combined with being disabled, had other plans. It ended up being okay when the surgeon said local anesthetic in the OR, after I was under, would be fine.
In fact, everything ended up being fine. The last thing I remember was getting oxygen, and then I was waking up and being lifted off the operating table. Surgery was all over just like that.
All the triggers I worried about encountering never came to pass.
Still, the morning after surgery, I woke up, saw my cast, and was compelled to remember what had happened. What a nightmare, I thought… but then it hit me: getting healthcare is not synonymous with having awful experiences forced upon you. How telling it was that my visceral response to anything related to healthcare is that it’s a “nightmare.”
In reality, I had just seen again that getting healthcare can be a positive where you get what you need, and nothing is added to your medical trauma.
Now, when I look at my cast, I make myself think, “I was cared for.” I think about how professional and kind everyone was, and how great I’m going to feel when the stitches come out in a few days. There’s nothing unpleasant to recall from the surgical experience (except maybe having to get up at 4 AM).
Indeed, for me to heal from my medical trauma, it’s going to take a lot of rewriting the narrative. I will do this both through what I tell myself and through having more and more good experiences in healthcare. I probably also need some more intense therapy for the trauma, like EMDR, but we’ll see.
Unfortunately, this is likely not the last surgery I’ll be having this summer. The next one could be even more triggering due to its nature… or, it could less triggering since this one went so well! Yes, I will tell myself again that everything will be okay.
A Mini Blog Update…
To those of you who are still reading my posts despite a yearlong absence until last week, thanks for sticking around! My relationship with PANS has evolved greatly since I started writing nine years ago. I needed the time away to regroup and decide what (if anything) I wanted to do with this site. Ultimately, I’ve come back because there’s more to say after all.
I won’t make any promises about future posting frequency, but I’m thinking I may get back to once a month like the old times, at least for a while. Stay tuned for more soon…