Category: Treatment

Not “Just Allergies:” The Major Neuroimmune Trigger You’re Probably Ignoring

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It was a Saturday morning when something in me snapped. I had no strength to get out of bed, and even if I did, it seemed like nothing I would do today would matter. The massive weight of the numbness pinned me to the sheets, and tears began to flow. But what was I upset about? I had no idea. All I knew was that I couldn’t stop, and this meant the all-too-familiar brain inflammation-induced depression was back.

In hindsight, there were signs all week that this was coming. I’d had a hard time staying on task with my work despite how much I enjoyed it. I’d had more difficulty than usual getting started on anything. Yesterday, it had gotten to the point where I realized it would be better to take a day off from productivity rather than slog my way through hours of frustration.

And yesterday, something else had happened: my seasonal allergies returned in full force.

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A 3-Month Post-Rituxan Update

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Three months since starting the new treatment, Rituxan, I can finally say that I’ve made obvious progress. It’s been anything but linear, and yet I’m more hopeful than I have been in a long time.

You may have noticed I’m not posting on here much, and my Facebook and Twitter profiles also haven’t been updated. But this is actually great news. It means I’m busy living my life and don’t really want to think or write about my illnesses. 

However, I know there are people out there wondering how I’m doing, and I don’t want to break my six-year streak of posting once every calendar month. So I’m finally logging back on to give an update.

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Rituxan and the Waiting Game…

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I’ve finished my first two rounds of Rituximab infusions and am happy to report that they went very well! 

To be honest, I was terrified of this IV medicine after reading about the potential side-effects of killing your immune system’s B cells. So let’s just say that after getting through the first five-hour infusion, I felt downright triumphant for facing my fear. Continue reading “Rituxan and the Waiting Game…” →

Done Treading Water: Why I’m Really Doing Rituxan This Time

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I’m starting a year of Rituximab infusions.

This is an IV biologic medication that kills your B cells. Yes, I’m wiping out a chunk of my immune system in the middle of a global pandemic. Yes, I’ve just signed on to do this every three months for at least a year. Rituxan is not a medicine you get prescribed unless you’re seriously ill—and apparently I am.

That last part is not exactly news to me, though it’s something I don’t like to admit. My baseline hasn’t met diagnostic criteria for PANS in over two years, meaning my mind is basically fine, some brain fog notwithstanding. Thus, I’m often able to work part-time and enjoy it, and I’m able to be social with my friends virtually—neither of which were so easy when I had classic PANS.

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Home from Partial Hospitalization

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Last I wrote, I had resolved to do whatever it took to stay in the Partial Hospitalization program. And guess what happened? I left the program. 😬

Part of it is that my insurance only approved a certain number of days. I could have fought for more. However, the more I thought about the whole program, the more I began to realize why it was time to go home.

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The Perils of Partial Hospitalization—And Why I’ve Agreed to Go

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“You need to go back,” my doctor warned me one day this summer.

I wiped the tears off my face and sighed. “I haven’t been able to walk more than a hundred feet in two months. You think I have energy for three hours of therapy three times a week?”

“You need the support… You’re getting worse and worse.”

I paused, knowing he wasn’t wrong—my psychiatrist is never wrong, and it’s maddening. “I know. But if going to therapy takes up all my energy, I’ll be too sick to participate. Isn’t there another way?”

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The Problem with Having an Anxiety Disorder AND Another Chronic Illness

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“Just go to the lab,” the doctor says, handing me a long list of tests.

“I have a port,” I remind her. “You’ll have to send this to the infusion center since my veins are too scarred.”

She paused, mulling it over for a second. “Well, the lab is where you get blood drawn, so I’m sure someone there will help you.”

“But phlebotomists can’t access a port.”

“They’ll find someone,” she ushers me out of the office, leaving me to hang out and dry and ignoring farther warnings about what will happen to me if I go to the outpatient lab…

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Why I Don’t Care What You Call Whatever’s Wrong with My Brain

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It was a typical Sunday morning a few weeks ago when it happened. My mom was cooking me an omelet, and dad was reading the paper. I was rummaging through the cupboard to get some honey to drizzle on a banana when I heard it:

“CLAW.” And then there was whispering in a female voice I couldn’t make out, which I somehow knew was about me.

“What’d you say, mom?”

“I didn’t say anything.”

I paused for a moment. “Did you say something, dad?”

He shook his head.

“So neither of you heard it?”

“Heard what?”

A chill ran down my spine as I suddenly realized what just happened: Continue reading “Why I Don’t Care What You Call Whatever’s Wrong with My Brain” →

Pure-O: The Kind of OCD We Need to Talk About

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For six years, I kept a secret that I was determined to take to my grave. I pretended I wasn’t constantly afraid. I made excuses when asked about my unusual behaviors. I was so hell-bent on avoiding being found out that I did everything I could to fool every psychologist, therapist, and doctor I encountered. No one, including myself, knew for all these years that what I suffered from was Pure-O OCD, in the form of scrupulosity or religious OCD.

And the whole disaster started with one thought.

When I was eleven, while lying in bed, something along the lines of “F– G*d” popped into my brain. As the good-girl church acolyte that I was, I felt horrified. What did it mean that a sacrilegious thought like that could appear in my mind? I felt like I had to do everything I could to keep it from coming back or else that meant I was a bad person. I already felt incredibly guilty that it had happened even one time.

But as the days went on, the more I tried to resist thinking that thought again, the more often it happened and the more it evolved and mutated into increasingly offensive thoughts until they had some of the most explicit, blasphemous, sexual, and violent content imaginable. Everything I didn’t want to think, I ended up thinking. I fell into complete and utter despair.

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Could This Antibody Be Stealing My Life?

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Why would this happen? How could I get worse while getting treatment?

Years ago when I started this blog, every time I had a symptom flare-up, I’d ask myself these questions over and over again sure that if I thought about them hard enough it would all make sense.

Unfortunately, when you have an illness which science has only recently begun to understand, you rarely get the satisfaction of knowing why you’ve gotten sick and what exactly will work to get you better. Sure, well-established, proven guidelines for diagnosing and treating PANS exist (though they didn’t when I started), but all too often, I relapsed without knowing why and had no objective test to prove how sick I was; I’d lose my entire personality, but the autoimmune markers you might expect in someone suffering from brain inflammation never showed up.

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