Tag: Mental Health

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

Published on by DreamingPanda4 Comments

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.

Continue reading “Self-Sabotage: Peeling Back the Onion of Baggage from Being Sick” →

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

Published on by DreamingPanda4 Comments

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

Published on by DreamingPanda5 Comments

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?

Continue reading “How I Was Diagnosed with PANS When I Was 19” →

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

Published on by DreamingPanda9 Comments

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

Published on by DreamingPanda7 Comments

“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.

Continue reading “Why I’m Getting Better Even When I Think I’m Not” →

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

Published on by DreamingPanda2 Comments

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.

Continue reading “Dear Sick, Scared 2015 Me… A Letter to Someone Whose Illness Uprooted Their Life” →

Home from Partial Hospitalization

Published on by DreamingPanda2 Comments

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.

Continue reading “Home from Partial Hospitalization” →

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

Published on by DreamingPanda5 Comments

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.”” →

PHP Day 3: “You Didn’t Fail.”

Published on by DreamingPanda8 Comments

Today makes my third day of Partial Hospitalization, and I already know I need to stay more than a week—and I’m mostly okay with that, but not sure whether my body will allow it.

Looking back at the last few months, I’m starting to see that, as usual, my psychiatrist has been right in saying I need to be here. As it turns out, it doesn’t much matter why I’ve lost this much weight below my healthy place because I’ve ended up with the same physiological consequences and even some of the distorted thinking of anyone with an eating disorder… My hair was starting to fall out. Continue reading “PHP Day 3: “You Didn’t Fail.”” →

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

Published on by DreamingPanda12 Comments

“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?”

Continue reading “The Perils of Partial Hospitalization—And Why I’ve Agreed to Go” →