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.
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!
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.
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