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. 

International numbers…

  • United Kingdom: +44 330 998 1320
  • Germany: +49 221 98203452
  • Sweden: +46 8 420 020 30
  • Denmark: +45 93 75 41 50
  • Norway: +47 52 90 06 78
  • India: +91 172 519 9257
  • Ireland: +353 1 907 9734
  • Poland +48 22 263 97 36

Click here for even more countries.

So What’s it all about?

My vision is to have a safe space where teens and adults with these illnesses can meet and talk to others going through the same things.  Although there are already some Facebook groups, not everyone has an account or wants to share with strangers in that setting.  Hence, the teleconference format.

It’s lonely and hard to discuss so much of what we face with friends from “real life.”  And there might be things you want to talk about with someone other than your parents, too.  (Sometimes I feel like I dump way too much on mine and wish I had friends I could turn to who understood.)

Although I’m glad for the many online support communities for parents, it’s sad to me that there’s almost nothing for those of us who actually live with PANS ourselves.  I realized that my large following has put me in a unique position to be able to change this.

(If demand exists, perhaps I’ll do something for parents in the future, but I felt like I needed to start with other patients themselves since there’s so little for us as it is.)

How does it work?

It’ll be an hour or two long, and you’re welcome to come and go or even just listen if you’re too shy to say anything.

I’ll start the call saying a few words on the theme of the month to get the conversation going, and then we can all discuss it.  At the end, there’ll be a time when you can bring up anything else you’re dealing with that might not have come up in talking about the theme.  It’ll be informal, and it may evolve over time once I see what people are looking for.

Check out the Facebook event here, and share with anyone who might be interested!

This may be the first meeting, but it shouldn’t be the last!

I’m calling it “Second Saturday Strength” because if it goes well, it will happen on the second Saturday of every month.  I hope to see many of you soon! 🙂


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On the Radio Today! A Special for PANS Awareness Day 2018

Today is PANS Awareness Day 2018.  There’s so much I could write as someone who has lived with PANS for most of my lifeeven more than I’ve already said in the 100,000+ words I’ve written in previous posts on this blog.

However, I’m doing things differently this year, and instead of posting about PANS awareness, I’m going to speak on national talk radio.  I’ll be interviewed on Worcester, Massachusetts’s John DiPietro show along with some New England PANS Association board members and a PANS parent. Continue reading “On the Radio Today! A Special for PANS Awareness Day 2018”

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!

When Getting Better Hurts More Than Staying Sick: The Paradox of Recovery

In the last couple of months, I’ve had a breakthrough in my recovery.  After being mostly couch-bound since January, I’m now able to run.  And my cognitive abilities have improved so much that I just finished a small project.  So many things I’ve hoped for have become reality!

I thought I’d feel nothing but elation if I ever got back to this point, but instead, now that I’m here…

I’ve found a dark side that no one wants to talk about.

Continue reading “When Getting Better Hurts More Than Staying Sick: The Paradox of Recovery”

4 Things I Learned from 4 Years of Blogging… And an Announcement!

What in the world have I done?!  I thought to myself.

A wave of panic ran through me, and my heart began to pound as I stared back at the computer screen.  I couldn’t believe it finally happened.  I’d exposed myself before the whole world—my life story, in front of any eyeballs that landed upon it.  Despite everything in me saying I shouldn’t be sharing so much, I’d just published the first post on this blog.  But there was no turning back now. Continue reading “4 Things I Learned from 4 Years of Blogging… And an Announcement!”

I Woke up in a Body I Didn’t Recognize: Living with Involuntary Movements

In June 2014, I lost my body. 

Over seventeen hours, I watched in shock as my body grew a mind of its own, erupting in wild, bizarre movements I couldn’t control.  What started as innocuous twitches in my  legs grew into full-body thrashes and twists and jerks over the course of one day.  And then I realized I couldn’t walk, because every few steps, my legs gave out and sent me collapsing to the floor.  Continue reading “I Woke up in a Body I Didn’t Recognize: Living with Involuntary Movements”

11 Lyme Facts I Wish I’d Known Sooner…

When I was a kid, I never quite fit in at school, but the outdoors were my refuge—every day, I came home and found peace and quiet in our woods.  Little did I know, nature was about to stab me in the back worse than anything the other kids might’ve said.

Continue reading “11 Lyme Facts I Wish I’d Known Sooner…”

The Part of PANS/Encephalitis Recovery We Don’t Talk About

For the last eleven years of being sick, time has been my enemy. 

The first sign I was ill was that I started moving in slow-motion—I lost awareness of time passing.  Doctors thought it was late-onset Attention-Deficit Disorder. Instead, as I’d find out eight years later, my immune system was attacking my brain.

Continue reading “The Part of PANS/Encephalitis Recovery We Don’t Talk About”