Tag: Lyme

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.

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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 1: “I Won’t Put It On.”

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Today was my first day of Partial Hospitalization, and it went both better and worse than I expected.

I don’t normally post two days in a row, but I’m in a writing mood and thought a few people might be interested in reading about my time in a partial hospitalization program for eating disorders over the next few days. I’m not sure if I’ll post every day or not, but today I need to talk about what happened. Continue reading “PHP Day 1: “I Won’t Put It On.”” →

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?”

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8 Ways to Help a Loved One with Chronic Illness During Holidays

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This Thanksgiving week, at a time when almost everyone is stressing out over travel and preparations and relatives, for those of us with chronic illnesses, the season brings additional sets of challenges.

Chances are, if you don’t have a chronic illness yourself, then one of your family members that you’re about to see does. It can feel awkward wondering what you should and shouldn’t say to this person, but as someone with both physical and mental health challenges, I’ve assembled a few tips for loved ones.

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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” →

Welcome, and Thank You!

Published on by DreamingPanda11 Comments

With all of the new followers joining my blog and social media accounts, I’m going to take this post to welcome you, say thank you, and talk about what’s next…

This month, over 4200 of you read my stories, and as the shy person that I am in “real life,” this is unfathomable. Those who read my extreme OCD story from the other week now know a part of my life that none of my “real-life” friends know—at least, not in such detail.

But what this means is that awareness about Pure-O/Scrupulosity OCD and PANS/PANDAS in adults is spreading, and even my bashful self is incredibly grateful to be a part of that—so, truly, thank you for sharing my posts.

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Why These Myths About Suicide Are So Harmful

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[Trigger warning: this post contains discussions of personal experiences with suicidal thoughts and misconceptions. If you’re in an emergency, please call the National Suicide Lifeline at 800-273-8255 or dial 911.]

 

No one needs to know, I told myself as I sat frozen, staring at my phone. I don’t need to call him, I tried to convince myself. I remembered how I promised I would if the thoughts came back, yet as soon as I pulled up my doctor’s number, I set my phone back down and started talking myself out of the call once more. Continue reading “Why These Myths About Suicide Are So Harmful” →

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.

Continue reading “Could This Antibody Be Stealing My Life?” →