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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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”

Why PANDAS Awareness Matters

As I made my way through the halls to my neurologist’s office last May, I stopped in my tracks as I saw a face I recognized. She was receiving IVIG and roaming the halls hooked up to an IV bag pole, accompanied by her mother and a nurse. She was exhausted. There was no light in her eyes. She had a sense of burden and deep sadness about her that penetrated to the depths of her soul.

Once you’ve seen the face of a child with PANDAS, you can never forget it.

Continue reading “Why PANDAS Awareness Matters”

Happy Birthday, Dreaming Panda

Cake

This week marks the one-year anniversary of my blog. To say it’s been an incredible year doesn’t even begin to describe it. I’ve come such a long way since I first started writing about this difficult journey—and so has this blog…

Last June, I’d hit rockbottom. I was in such bad shape and declining so much that I thought I’d die. Although I was otherwise dysfunctional to the point of not being able to walk, not eating, and not being able to speak coherently, I was able to write. In the countless hours my family spent researching PANDAS/PANS on the internet, they’d never found a blog written by a PANS patient. I thought maybe I could change that. I hoped that maybe by sharing my experiences, I could help someone else going through the same thing. So I started a blog.

Continue reading “Happy Birthday, Dreaming Panda”

Is Looking at My Medical Records Really Too Much to Ask?

This week, I’m going to be seeing three neurologists including one PANDAS specialist. As you can imagine, I’m very nervous but also excited about the possibility of figuring out what has gone on with me for the past eight years. In order to prepare for the appointments, I’ve been trying to get my hands on my own medical records for awhile—with little success.  Forgive me, because I need to vent… Continue reading “Is Looking at My Medical Records Really Too Much to Ask?”

“You’re Just Tired”

So I tried Xyrem for a week, and I did sleep like a baby. It was actually wonderful—I would wake up in the morning feeling completely rested and not feeling like I needed twenty more hours of sleep. I hadn’t felt that way for eight years. But it upset my stomach so badly that I lost even more weight because I was unable to eat anything. I’m down to a hundred pounds. I was around 111 before this summer…

My doctor is just plain flummoxed by my strange reactions to meds, so he made me stop everything over the weekend—even my anti-depressant. As would be expected, I felt horrible in every way. But one of the worst parts was what someone said to me about how I would be off my meds: Continue reading ““You’re Just Tired””

De(pressed)ad Again…

I don’t even know where to start since I last wrote.  I seriously think I’m going crazy.

The other night, I got in a really bad way.  During the day, I would just sit down and stare into space, because that was all I could do. I had no concentration whatsoever. Whenever I tried to do homework, I found myself just staring, thinking about nothing. I tried to make myself focus, but then I’d just start staring again before I realized I was doing it.

Continue reading “De(pressed)ad Again…”