Tag: Mental Health

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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Rare Disease Day 2021: What You Can Do to Demolish the Myth That PANS Is Rare

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On this Rare Disease day, for the 1000th time, let me clear something up and then show you how to fix it:

PANS/PANDAS is not rare, and it’s not only kids that have it. So please, stop referring to it as a “rare pediatric disorder.”

Current estimates say that PANS/PANDAS affects 1 in 200 kids. And since nothing magical happens when a person turns eighteen, you can be sure there are thousands and thousands of adults walking around who grew up and never got treated.

I have been advocating for awareness for nearly seven years, ever since I was diagnosed at age nineteen. We have seen much progress in research, but when I can still go to a doctor and hear “rare” and “pediatric,” it feels like I’ve been screaming into a void for all this time. And I realize that I am only one of thousands of advocates who probably feel the same. So if we haven’t been able to achieve major reforms in the treatment of this disorder so far, what are we missing?

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Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick

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Last week, I did something wild: I signed myself up for a multi-week professional development program.

I already have so much going on with finishing my book, but I’d applied a while ago to this selective program. So once they accepted me, how could I say no? Besides, I believe it will also indirectly help me with my book by making me structure my days better.

The fact I’m attempting this program is a big deal to me for a lot of reasons, but largely because of what it says about my mental state. For so many years while fighting PANS, I just didn’t have it in me to invest much in myself or my career. On the outside, my professors would praise my efforts because I was successful between flare-ups. On the inside, it was often half-hearted, and I constantly questioned if I even wanted to be in my field anymore or not.

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The Simple Thing You Can Do to Help Thousands Living with PANS/PANDAS

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As an adult with a neuroimmune condition that most doctors don’t know how to diagnose, let alone treat, all too often, I’ve felt like there was nothing I could do to change their minds. I would bring papers and mention the many fine hospitals that are researching PANS only to be dismissed and gaslighted. Why? Partly due to arrogance or wanting to maintain the status quo. But these behaviors have their root in the “P” being for pediatric, the fact none of the research studies mention adults, and the lack of enough large-scale studies in general.

Have you ever felt alone and frustrated by how little help is available while you watch your life waste away?

Now what if I told you that you could do something tangible that could change the situation? What if I told you there was a way for you to help bring PANS out of the grey area of medicine into which many providers place it? Continue reading “The Simple Thing You Can Do to Help Thousands Living with PANS/PANDAS” →

How I Was Diagnosed with PANS When I Was 19

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After weeks of waiting and hoping and worrying, the time had finally come for my appointment with the mysterious expert neurologist. My parents and I arrived half an hour early to a spartan waiting room with an almost-eery quiet. A single tub of building blocks and several stuffed panda bears made me wonder if the staff really understood that they had allowed an appointment for an adult.

Forty-five minutes later, this concern was allayed when the doctor emerged to call me back without batting an eye when she saw my nineteen-year-old self. But all at once, I felt my stomach do a somersault as it occurred to me that she could be my last hope. Eight years of misdiagnoses had led here. Could this surprisingly soft-spoken woman finally be the one to help?

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My 6-Year Blogversary, My Greatest Hope, & What’s Next

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Ten days ago, on my actual blogversary, I had a nice 6-year anniversary post planned—the usual reflection on how I started blogging and how much it means to me. And I still stand by my belief that making this website and chronicling my journey through neuroimmune conditions and their psychiatric consequences has been one of the most meaningful things I’ve ever done.

But I somehow could not bring this post in for a landing, which tends to happen when I feel like I have to post something rather than feeling inspired. So I stepped back and thought about what was going on. And now it’s time to be honest… Continue reading “My 6-Year Blogversary, My Greatest Hope, & What’s Next” →

Why I’m Getting Better Even When I Think I’m Not

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“Ups and downs are better than straight down.”

The other day, I found this cryptic message scrawled on a sticky note inside my desk. I had completely forgotten that this used to be one of my favorite sayings in the years when I was still fighting through the brain inflammation from PANS. But now, it’s taken on a whole other level of meaning with my new challenges…

I remember clearly the day I was diagnosed with PANS, and my neurologist said I needed IVIG treatment urgently. It would be an infusion of antibodies from thousands of human donors in an attempt to stop my own autoimmune antibodies from attacking my brain.

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Dear Sick, Scared 2015 Me… A Letter to Someone Whose Illness Uprooted Their Life

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Dear 2015 me,

I know you feel like a stranger in your own life right now while you’re the sickest you’ve ever been with PANS. I know you’re scared, lonely, and unsure if there will ever be anything more to your life than this illness that attacked your brain and kidnapped you from your own body. I know you feel invisible because of all the hours you’re trapped in your room and all the days when you’re trapped in a mind you no longer recognize. You feel unseen because no one knows how much it takes for you to accomplish what others take for granted.

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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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PHP Day 7: “It’s Rehab for Your GI System.”

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After finishing an entire week in a Partial Hospitalization Program for eating disorders, I am both more optimistic and more pessimistic about moving forward. As expected, I had a big ME/CFS crash on Saturday, the day after the week of PHP finishes. It’s pushing my body past its limit. I’m willing to put up with the worsened symptoms as long as I’m not causing long-term harm, but it’s a fine line. Continue reading “PHP Day 7: “It’s Rehab for Your GI System.”” →