A Confession… And Why I Need Your Advice

For the last few months, every time it gets close to the end of the month, I tell myself I’m going to have a post ready before the wee hours of the morning of the final day. I tell myself I need to sit down and come up with something to say so I don’t have to stay up late trying to squeeze out some words.

Yet every month so far, including tonight, it’s gotten to be the last day of the month, and I’m scrambling to post something before midnight so as not to break a seven-year streak of posting on this blog every month.

I could have stopped blogging years ago. When I started writing on here in 2014 around the time I was diagnosed with PANS, it was never supposed to last more than a few months. I figured I would stop writing when I got better, and surely I was going to be better in a few months, and then go on as if nothing had ever happened… Right? Wrong, very wrong. As it turns out, you don’t just undue eight years of brain inflammation with a single round of IVIG. Healing a brain is often a long and complicated process.

But eventually I reached a point where I stopped having serious flare-ups. It only took four years, three rounds of high-dose IVIG, eight rounds of low-dose IVIG, ten rounds of high-dose IV steroids, a tonsillectomy, intensive outpatient therapy, psych meds, and more perseverance than I knew I had!

Now it’s been three years since I had to break out the Prednisone to deal with a flare. I rarely get “micro flares” that cause a few old symptoms, but I manage with Alleve, antibiotics, and/or anti-histamines depending on what set it off. And then I go on as if it never happened. Then I go back to work the next day and carry on with life as usual… Sometimes it’s staggering to think it was only four years ago when I had brain inflammation so intense that I had to do nine rounds of IV steroids to stop the autoimmune attack––and then spent eight months healing from the brain damage.

As I go about my life working in my chosen field now, it all seems like a lifetime ago. I used to wonder if I would ever feel like myself again after my brain healed, and I can finally say that I do. And maybe that’s why it can be so difficult to grasp anymore the perpetual trauma of PANS that I once existed in for all those years.

So what about this blog?

All of this is to say that I’m feeling more and more distance between me and PANS, and that’s a really good thing. Yet here I am, the author of the #1 PANS Blog on the web. I have a platform that helps people. I still get more messages than I can answer efficiently, many from readers thanking me for having this blog. So every month, I log back on to post in the hopes I can come up with something I haven’t already said in the 150,000 words written on this blog so far.

And today, I think I’ve finally failed to have anything new to say. So I’m finally confessing the writer’s block I’ve had for quite some time now.

However, calling it “writer’s block” is ironic when I have a 93,000-word manuscript sitting on the table downstairs, most of which I wrote in the last year. Yes, I recently completed my self-help guide/memoir on succeeding in college with a chronic illness, and the plan is to release it in late spring of 2022! There is no book like it on the market, and I think it will offer some much-needed hope to everyone out there with an illness or disability that makes them question if they can get through college or not.

I won’t say anything else about my book for now, but I mention it because I might only share a few more posts on this blog, unless I can come up with more to say that I haven’t said already. I plan to continue posting on here at least once a month until the book comes out, but then I will probably switch to a different platform after that. I may occasionally post something on here once in a while after that point, though, but it may not be every month like it is now. Basically, this blog may be winding down, but my writing career and advocacy work have only just begun. It’s actually a really exciting time, and I hope this book will help bring neuroimmune disorders more into the mainstream.

In the meantime, I need your input…

With possibly only a few posts remaining on here, I want to make them count. I’d like to know:

What keeps you reading my blog after all these years? And what would you like to see me talk about next?

I want to thank all of you who have been reading my blog over the years for all of your support. It has meant so much and sometimes been the main thing keeping me fighting the good fight. Without you all, this book would never have happened. So thank you, from the bottom of my heart. I hope you will continue with me through the next part of my writing journey both on this blog and in my book!

Be sure to let me know what you want me to write about next in the comments…

When the Normal Is Extraordinary: Recovery from PANS and the Pandemic

If there’s anything we can all agree on right now, it’s that nothing is normal at the moment.

Maybe you’ve had to work or do school at home for nine months. Your favorite businesses are closing down. Most everyone is wearing masks on the rare occasions when you brave the grocery store. There is a constant sense of impending doom that we have all become accustomed to, for one reason or another. Continue reading “When the Normal Is Extraordinary: Recovery from PANS and the Pandemic”

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

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

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”

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

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”

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

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.””

Welcome, and Thank You!

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.

Continue reading “Welcome, and Thank You!”

Announcement: PANS/AE/Lyme Teleconference Tomorrow!

Hi everyone, I’m excited to share that tomorrow (Saturday) is the launch of the first-ever teleconference support group for teens and adults with PANS, AE, Lyme and other similar/related conditions.  Let this be your official invitation!

Join me at 2PM EST (7PM GMT) tomorrow.

Call (605) 472-5395, and enter the meeting ID: 339705. 

Continue reading “Announcement: PANS/AE/Lyme Teleconference Tomorrow!”

Interview with Me Tonight: A Special Announcement

Hi everyone, I’m interrupting our regular programming to let you know I’m speaking on the Stanford PANS Parents Support Group teleconference tonight at 5:45 Pacific Time!

You don’t have to be in California to listen.  You can hear it by calling 1 (650) 724 9799.  International numbers are available here.  The meeting ID is 649 394 165.

Dr. Frankovich from the Stanford PANS clinic will be conducting a Q&A at 5:45, and then I speak around 6:30.  I’ll be sharing my story, some encouragements, and some things I wish I could’ve told my parents when I was at my worst.

I hope you’ll join me!

Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators

This week, legislators in Wisconsin have the opportunity to save hundreds of lives and millions of taxpayer dollars: a bill to establish an advisory educational council on PANS/PANDAS is under review.  New York is also considering similar policies, and several others including Virginia have successfully implemented them.

Continue reading “Why PANS/PANDAS Awareness Matters: An Open Letter to Legislators”