Remember back during the 12 Days of PANDAS Sucks when I talked about 12 Ways to Advocate All Year Long? And remember I said I’d be talking about it again…soon? Hello…I’m back with a new PANDAS Sucks Blog Series: GR8 ADVOC8 on the 8s.
On the 8th of every month, we’ll share at least 3 ideas on how to be a GR8 ADVOC8 for PANDAS/PANS. We can certainly share ideas of advocacy and awareness anytime (24/7/366–2016 is a leap year), but we’ll definitely share on the 8th of every month.
For February, let’s be GR8 ADVOC8s and send Valentine’s and LOVE out about PANDAS/PANS. Advocating from a place of gratitude and LOVE just seems fitting for Valentine’s Day, eh?
1. You can send LOVE via PANDAS/PANS-GRAMS to your kids. Read about PANDAS-GRAMS here OR just click here to send a Valentine’s message, song, poem, or joke to your favorite PANDAS cub or PANS kiddo. It just takes a few minutes for you to type out a message…I’ll do the rest compiling them into one big Blog o’ LOVE that will be published on 2/14. I love putting these special messages together and making PANDAS/PANS People smile. If anyone needs more smiles, it’s PANDAS/PANS People! 🙂
How is this PANDAS/PANS Advocacy? It puts the message out on the World Wide Web that PANDAS/PANS exists, and these are CHILDREN that are affected. The more we talk about PANDAS/PANS, the better. It also helps the kids know that they’re not alone. There are many kids affected by PANDAS/PANS. That’s sad…but we can show them how much they are loved…that’s happy. So send your Valentine’s Day PANDAS-GRAM today!
2. Pick up a Valentine’s Day card for someone that has made a positive difference in your PANDAS/PANS Experience. It might be your favorite PANDAS/PANS Specialist. OR, send a Valentine’s note to that local doctor that helped you out and really listened and got you the Specialist appointment or gave your child the medications s/he needed. OR, if you have a teacher that goes above and beyond when it comes to understanding your PANDAS/PANS child, let them know you appreciate it with a note that signed, sealed, and delivered with LOVE. OR, give a family member or friend a note that tells them how much it means to you when they let you vent about PANDAS/PANS. OR, send a card of LOVE to another PANDAS/PANS Parent who is always there for you or helps you out on a regular basis. The ones that listen to your rants and deepest fears and cheers the loudest when something good happens.
How is this PANDAS/PANS Advocacy? You just never can go wrong with telling somebody Thank You and I Love You. It helps those doctors and teachers that put themselves on the line for our kiddos know that we DO really appreciate their efforts. If you choose to send to fellow PANDAS/PANS Parent, you can show them that their knowledge from dealing with this condition for months/years is definitely helping others. I know I owe a ton of what I know now to Parents that shared their tips and tricks with me for 5+ years. <3 (Note to Self: Get some Valentine’s Day Cards!) Don’t want to send a card?…send an email because it’s still as sweet.
3. Give yourself some LOVE. Yes. I said that. Give YOURSELF some LOVE! What better day than Valentine’s Day to celebrate YOU! So, this month, find a cool coffee shop and sip a latte ALONE. Buy that spring sweater that matches your eyes and makes you feel pretty. Take a class that gets you out of your house for a few hours or so every week. Order yourself NON-medical book from Amazon. Decide to meditate for at least 10 minutes a day. BUY that chocolate and then EAT that chocolate. Want a new pair of shoes?…then you go get yourself a totally awesome new pair of shoes! RED ONES!
THE POINT HERE IS TO DO SOMETHING THAT IS JUST FOR YOU!!!
And I want to point out that this goes for all the PANDAS/PANS Dads too. I know my readership is skewed to Moms…that’s part of PANDAS/PANS. And there’s a bit of an antiquated idea that women will pamper themselves with bon-bons and bubble baths. (I hate both of those things. Ugh.) But the Men are supposed to be strong and don’t need a break. Guys, I want you to feel like you can take a breather too. It’s difficult for everyone when dealing with PANDAS/PANS. You Dads can eat bon-bons and take bubble baths or whatever the hell it is that you want to do to de-stress. Maybe it’s barbeque and beer. Whatever. Figure out what it is and then just do it. Take care of yourselves too Fellas!
How is this PANDAS/PANS Advocacy? If you wanna be a GR8 ADVOC8 for PANDAS/PANS, then as much as possible you need to be in the right mind for it, be rested, and be centered. You will do better advocacy if you are in a place of LOVE no matter how much fear and anger and bitterness you have (and believe me, I have plenty of fear and anger and bitterness too). But when you can take care of yourself, you’ll find that you have more energy and better ideas and more patience for your PANDAS/PANS child (and more patience for all the idiots getting in your way of healing your child–sigh). But seriously Dudettes and Dudes, take care of yourselves whatever that may mean to you. Seriously. I cannot emphasize enough how much self-care DOES come into play when you are a GR8 ADVOC8.
NOTE: I want to also say that if taking care of yourself means that you can’t be a GR8 ADVOC8 right now, then that’s fine…you’re still being a GR8 ADVOC8 by admitting that. You have to heal too. I do hereby solemnly swear to NEVER, EVER make somebody feel like they HAVE to do something they don’t want to do. That’s not PANDAS/PANS Advocacy…that’s bullying. Your health and your child’s health means more to me than any action you do or do not take. I promise you. I’ve dropped out before…I might drop out again. That’s PANDAS/PANS…that’s Life. This stuff will cut you up and take you in and spit you out. Sigh.
PANDAS/PANS Advocacy will come in all sizes, shapes, and forms. Basically, if you’re talking about PANDAS/PANS then you’re advocating. If you’re supporting someone or something to do with PANDAS/PANS, then you’re advocating. Everything we do individually has the potential to benefit us ALL, and if we’re ALL working together…Holy Moly, who knows what we can accomplish?!
Okay…so we ALL have the plans to be GR8 ADVOC8s for February. What about March? Have ideas on what actions we can ALL take to spread the word about PANDAS/PANS and make real differences? If you have a GR8 idea for how to be a GR8 ADVOC8 on the 8s, just drop me a line here. We can work together to bring that idea to fruition so that we can ALL benefit from it. One drop in the ocean at a time bringing a tidal wave of change. A big tsunami of Super Stuff for PANDAS/PANS. 🙂
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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, likes a good red wine, 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,Instagram, 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.