• Home
  • About
  • Contact
    • PANDAS Sucks Because… Form
    • PANDAS Silver Linings Form
    • PANDAS/PANS In Your Words-Guest Blog Form
  • What Is PANDAS/PANS?
    • Symptoms
    • Diagnosis & Treatment
  • Resources
    • Articles
    • Web Sites
    • Amazon Store
    • PANDAS/PANS Support Groups
  • Panda Bears
  • Write A Guest Blog!

PANDAS Sucks

a blog about what PANDAS is really like. (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus)

  • My Words
  • Advocacy/Awareness
  • PANDAS Sucks Because
  • PANDAS Silver Linings
  • School
  • Self-Care
  • Your Words-Guest Blogs

The PANDAS Vortex!!!

2014-01-24 by Sarah 3 Comments

abstract

Why does PANDAS Suck so much? Here’s why.

Just when ya think PANDAS stuff has calmed down and you are possibly able to breathe easy…yeah…you aren’t able to breathe easy. At any moment, you can easily be sucked right back into the PANDAS Vortex. It’s a black and white hole that keeps a hold on you no matter what you do. You know the way it goes about…it takes you in and spits you out…oh, cuts you up.

No matter how well your kid has been doing. No matter how normal everything might feel for a while. No matter how you are starting to feel like your old self but are still trying to be gentle on yourself because you finally realize how delicate your psyche is (dammit!). No matter how much future planning you are starting to do. No matter how good things are, it can all come flooding back in a split second. WHAM! BAM! PANDAS! And the trapped feeling bubbles up with much panic & alarm. Whoop! Whoop! Whoop! Possible flare starting! Possible flare starting! Or this could be a full-blown exacerbation starting. You have no way to know…not yet anyway. Or it could be a tiny blip. But quite possibly the SKY IS FALLING! Or maybe not.

And the seesaw of second guessing begins. Woohoo. I mean, Boohoo.

And you saw it. You felt it. Kinda. Your Spidey/PANDAS Mom senses were tingling. Something was off. Like the cat scene in The Matrix…a PANDAS deja vu…a glitch in the system…something’s changed. But you made yourself NOT focus on it because you didn’t want it to be anything. His attention was off the other day…more scattered than usual. But rather than freak out about it, you were just Bitchy Mom instead and griped/tough loved him through it. Or you let yourself enjoy the fact that your almost-10-year-old wanted you to lay down with him at bedtime, which he never does. Or you decide you are going to POSITIVELY THINK your way through this thing, manifest your own destiny, and it’s simply NOT going to be an issue. La La La. (Because I’m good enough! I’m smart enough! And doggone it, people like me! 🙂 )

Then the school calls. Fuck. But it’s an okay call, and they’re working with you on it. No big worries…yet. Yet.

Things are still good. Yes. You’re not having issues at home, and things have really actually been kinda great. He’s playing a team sport (basketball) for the first time, which is adorable. Cub Scouts is still going okay. And he’s still going to gymnastics class all right. But the school just called. AND you just found out there were some issues at school yesterday that you didn’t know about because he settled himself down. So maybe everything will be okay. Right? Right? Anyone? Anyone? Bueller? Bueller? Bueller? Bueller?

Or you’re about to spiral down to a level of hell you’ve already been to before.

Or he just has another infection that I need to find and treat.

Or it might just be a blip…a minor bump.

Or…. Or…. Or….

So it might be his flu from last week has triggered something. (We both had the flu, and I’m still slightly exhausted.) He has a loose tooth that he’s very worried about. (So the loose tooth could be causing issues, and the OCD and anxiety about the tooth causes its own issues.)  He could be reacting to an exposure to something…anything because so many people are sniffling and sneezing and sick. Or just because it’s January–we’ve had an issue every January for the past five years…every single one since the whole BIG thing got started. 2010. 2011. 2012. 2013. And now…2014. Dammit.

And my silly superstitions have kept me from writing our PANDAS Specialist to give the final post-IVIG report. It’s because whenever I tell him things are going okay, they tend to immediately go the opposite direction. I’m so late with that report. Ugh.

So…deep breath in…deep breath out. Take the life jacket off, and for goodness sake, get outta the freakin’ life boat. You’ve been here before…many times. You’ve got this thing. You’ve got it. You can do it.

It’s the nature of PANDAS…and you know…PANDAS Sucks. And the PANDAS Vortex is way colder than anything polar…it’s colder than ice…and that’s cold.

Love,

signature

P.S. My money is mostly on the tooth causing the current issues. Loose teeth really freak Jesse out A LOT. I hope the dang Tooth Fairy gets here fast!

Tell us why YOU think PANDAS Sucks. Click here. We post these reasons in a blog series.

Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!).  PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Twitter, and Pinterest.

Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor. 

Have something you want to say? Send a message Click here.

Share this:

  • Click to share on Facebook (Opens in new window)
  • Click to share on Twitter (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Pocket (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Google+ (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to print (Opens in new window)

Comments

comments

Filed Under: Blog, My Words, Popular Posts Tagged With: PANDAS

Newsletter

Comments

  1. Erika says

    2014-01-24 at 8:22 pm

    Thank you for blogging! I feel the same way but don’t know how to put it words!

    Reply
  2. Glorianna Peng says

    2014-02-05 at 10:50 am

    Sarah, we are living the same life (that’s so sad and I’m so sorry!)! And how I HATE LOOSE TEETH (we’ve only gotten through 3, and I shudder to think of the rest that still need to fall out of my almost-7 year old’s mouth). We had a few good days over this past weekend only to be sucked back in again since he’s resumed school. I live in fear of not only colds and flus (those are givens) but the MERE exposure to illness (but how can that be avoided with him going to school? And no, I’m not up to homeschooling, there’s only so much I can do amidst ALL that we are already doing). We’ve also done IVIG, multiple ABX, special diets, supplements galore, and are still doing most. The Vortex is the worst part– the part where things get better and you start to relax and let yourself feel happy/normal for a brief moment until BAM! BLAM! SLAM! someone gets sick at school, a tooth gets loose, or who knows why… and The Vortex sucks you in again. Does this ever get better? Will it get any easier? I’m glad I stumbled across your blog, I needed it this morning. Email if you ever need to vent.

    Reply
    • Sarah says

      2014-02-05 at 1:00 pm

      He lost the loose tooth yesterday. (There’s video on my Facebook page. 🙂 ) Sorry you’re going thru the same things. I’m sorry any of us are. Glad ya found my blog too. PANDAS Sucks! It will get better & easier & all that stuff tho’.
      Love,
      Sarah

      Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

  • Email
  • Facebook
  • Instagram
  • Pinterest
  • Twitter

SIGN UP FOR PANDAS SUCKS NEWS

Search This site

We Wanna Hear From You!

  • Contact Form
  • PANDAS Sucks Because…. Form
  • PANDAS Silver Linings Form
  • Write a PANDAS Sucks Guest Blog! (Form)

Follow Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Your Words – Guest Blogs

Your Words: Anymom’s Special Message to You

Your Words: Anymom’s Special Message to You

Your Words: That Boy, Do You See Him?

Your Words: That Boy, Do You See Him?

Your Words: Dear Everyone…. (Guest Blog by Gina)

Your Words: Dear Everyone…. (Guest Blog by Gina)

More Posts from this Category

PANDAS Sucks Because….

Your Words: PANDAS Sucks Because…. (#24)

Your Words: PANDAS Sucks Because…. (#24)

More Posts from this Category

PANDAS Silver Linings

PANDAS Silver Linings #5

PANDAS Silver Linings #5

More Posts from this Category

Self-Care

Self-Care for Caregivers (#2): 25 Self-Care Ideas That Take 10 Minutes Or Less

Self-Care for Caregivers (#2): 25 Self-Care Ideas That Take 10 Minutes Or Less

More Posts from this Category

Popular Posts

HOPE in PANDAS/PANS

I’mma Say The Thing

Being A PANDAS Mom

You Say No, And I Say Yes…to IVIG

PANDAS/PANS Law

12 Ways to Advocate All Year Long: 12 Days of PANDAS Sucks

5 Year PANDAS-versary

The PANDAS Vortex!!!

FIX IT!

I Speak Your Language. I Speak PANDAS!!!!

Recent Posts

  • Your Words: Anymom’s Special Message to You
  • Your Words: PANDAS Sucks Because…. (#24)
  • Your Words: That Boy, Do You See Him?
  • Self-Care for Caregivers (#2): 25 Self-Care Ideas That Take 10 Minutes Or Less
  • Your Words: Dear Everyone…. (Guest Blog by Gina)

Categories

Archives

Click to Purchase Book

I was honored to be a Parent Contributor for the book PANDAS and PANS in School Settings. This is an excellent resource for you to share with Educators and Others for better understanding.

Please Read!

Sarah Jane Alleman/PANDAS Sucks is not a doctor. Please seek professional care for your child and provide treatment under the guidance of a physician. Please do not ask me for doctor referrals or specific medical advice. This blog/web site is for informational and support purposes only. I am not a doctor.

Please tell us if you notice any errors/glitches. The contact form can be found at the top of every page. Thank you!

Copyright © 2013-2018
Sarah Jane Alleman/PANDAS Sucks
All Rights Reserved

Click Image for Copyright Notice Details & Affiliate Disclosures

Copyright © 2018 · Magazine Pro Theme on Genesis Framework · WordPress · Log in