Three years ago on October 9th just past midnight, a blog was born. Now here we are three years later with FOUR PANDAS/PANS Awareness Days under our belts. Every year there seems to be more and more Awareness Day activity too. Woohoo! The PANDAS/PANS Community ROCKS!
As far as my personal Awareness Day activity, it felt like I didn’t do as much this year as last year when I posted every hour on the hour. Haha! But this year there was quality over quantity maybe. I’m not sure because I was still busy doing stuff all day long. I think a bit of that was because I was trying to do several things at once managing PANDAS and non-PANDAS projects. I’m also horrible at estimating how much time something will take me. When I start work, I’m suddenly an optimist thinking everything will take about 10 minutes. Nope! This blog will be posted waaaaay after midnight. It’s already 10/10/16 and past my blog’s bday. Oh well.
Also, this year, I worked with a great Team to collaborate on the PANDAS/PANS Awareness Day Facebook Page. More coming with all of that in the coming months. So, be sure to like that Page if you haven’t. October 9th is totally awesome, but PANDAS/PANS Awareness doesn’t just happen ONE day per year. We all do what we can, when we can and with what we have. On the Awareness Page, our motto became “Together, we build a better tomorrow.” YES! And that better tomorrow happens after many productive “todays” of working together.
- Kentucky did receive an official PANDAS/PANS Awareness Day Proclamation for the 3rd consecutive year. Thank you Governor Bevin! I spent a nice night out with other PANDAS Moms in the group. PANDAS Silver Lining…I’ve gotten to meet a lot of really wonderful and intelligent Moms while dealing with PANDAS. People I’d never met if not for all this, and I’m not sure my life would be as complete without them. Oh! KPPS is also going to be donating PANDAS/PANS books to some local libraries once they arrive.
- Here’s a PANDAS Sucks guest blog, I Speak PANDAS, that Break the Parenting Mold graciously posted for our Community on this Sunday, October 9 for PANDAS/PANS Awareness Day. (Thanks Jen and Kristi!) It was shared over 2,00o times in less than 24 hours! This was a blog that I wrote almost 3 years ago, and it hardly needed any tweaking. All of it still rings as true as when I sat at the computer and wrote “I Speak Your Language. I Speak PANDAS back in 2013.” Sigh.
- Please complete this State of the PANDAS/PANS Community survey. It should give a lot of good information about the state of the PANDAS/PANS Community. Your answers are confidential., and I’ll report the answers and trends in a future blog. In just the first day, over 100 of y’all took the survey. THANK YOU! It will be great to see what everybody thinks. I’ve taken some sneak peeks at the raw data…good stuff! Thanks again!
- You get a 20% discount! You get a 20% discount! Everybody gets a 20% discount off the book PANDAS and PANS in School Settings by Patricia Rice Doran!!! Here’s what your 20% savings looks like: Original price: $24.95…20% off discount: $19.96. (And right now that is cheaper than the Amazon price!) In order to receive 20% off PANDAS and PANS in School Settings, simply call the publisher at 866-416-1078 and quote the code “PAND16” to receive your discount. Offer is good 10/9/16 – 11/9/16 only. (Standard shipping and handling rates will apply.) Here are the book discount directions visually to follow and save and share.
I have a few more things that I will post over the rest of this month. Parent guest blogs. More of the “PANDAS Sucks Because…” memes. Spotlights on organizations. I’ll have some personal blogs too.
As I reflect over the past year, it has been a doozy. Thankfully, Jesse is in a good place…now. This time last fall, he’d just had strep, and the countdown clock to a major exacerbation was unknowingly ticking. The winter brought even more strep and exposures to illness that created whatever it is that makes things perfect for PANDAS to take your child hostage. Then the spring brought IVIG and a steady climb back to a good place. The summer was fun one with even more healing and some fun trips.
This 2016 Awareness Day finds me homeschooling Jesse for 7th grade, which neither of us are quite in the groove of the school year yet. I’m also getting ready send out an IVIG appeal letter to the insurance company. Ugh. (The irony of the insurance company denying to pay for the treatment that brought Jesse back from the brink. Jerks!) And trying to decide how to shape some non-PANDAS projects of mine for a new business. And I’m also looking ahead at my PANDAS/PANS Advocacy work and deciding what actions…excuse me…PANDActionS I need to take.
What’s in store for me and the PANDAS Sucks blog in the year to come?
- A Facelift. I know the blog is only 3 years old, and I’m all for a positive self-image and letting your real age show. However, in the blog world, 3 years is like 3 million. That much time brings tons of design changes and new trends. I will be revamping the blog and updating the look and adding features and making it easier to navigate. I have some ideas, and we’ll see how well they can become a reality. (I also maintain a web site for Kentucky PANDAS/PANS Support. But it’s a clean design and only 1 year old…or 1 million in blog years. It’s just a baby. Haha.)
- Surveys. I just launched a big State of the PANDAS/PANS Community survey. I upgraded my Survey Monkey package while designing it and for some other non-PANDAS projects I do. If you can think of any interesting topics you’d like to see in a survey form, message me here.
- More Giveaways and Special Offers. I liked doing the book giveaway. And I just negotiated y’all a book discount on PANDAS and PANS in School Settings. I am going to try to do more of that. It might not always be something big (I have an idea for something small as the next giveaway), but it will always be fun. (If you have ideas for this or want to donate an item, let me know here.)
- More Self-Care. I’m always preaching about taking care of yourself, and I think I do an okay job of it for myself. Some of my self-care comes in the form of procrastinating and then deciding whatever it is doesn’t need to be done anyway. LOL! But this next year, I do plan to start exercising more since we’re going to be going to the Y for homeschool phys ed. I already practice mindfulness and meditation. I am going to start taking real breaks and vacations away from the computer. Those real breaks are difficult because I do sooooo much social media work in all of my PANDAS and non-PANDAS projects. I’m going to make it happen somehow though. And I want more manicures and pedicures, dammit! (I have said that in every bday blog. Haha!) I’m going to read more books too…and NOT just medical or non-fiction. And YOU need to practice more self-care too. You know you do. <3
- More Actions…PANDActionS, to be exact. A little less conversation about Awareness, and a little more Action (PANDActionS!) to get things moving forward. Too often any kind of activity is mistaken for progress. It’s human nature to look at busyness and see it as real business and more than it is. I’ve been in all of this for over 6 years now. While I do believe that more doctors may be diagnosing PANDAS/PANS, it’s still a struggle to get kids diagnosed quickly and treated effectively. There’s still no medical code. There’s still no official treatment protocol. There’s still no insurance coverage for some or maybe even most of us. And now there’s even a lot of new, shitty info out there about IVIG thanks to that poorly designed IVIG study and resulting negative commentary from other doctors. (Thanks for making it more difficult to get IVIG! OMG! More on that from me coming soon. I’m sending in an IVIG appeal letter this week. I’ll be good and pissed off.) Sure the Centers of Excellence are coming…at some point…but they’re many of them are going to be about research, not treating the masses. Sure there’s going to be new stuff talked about at the conference next weekend, but we’ll also hear the “THIS next year is the year it happens” line that we’ve been hearing for…ummmm…years. We’re further along now…I guess. It’s hard to tell really how much real progress has been made, but there’s been some. Families still suffer too much, and diagnosis with effective treatment still takes too long. I have a ton of thoughts on all of this. But I’m kinda tired of talking about it, and I’m even more tired of watching it all not happen. All of this gets even more frustrating when you realize the first PANDAS paper was published in 1998. 1998!!! UGH! We need Action…PANDActionS! And you know I practice what I preach. We’ll be revisiting this topic.
- More Quality Time With Jesse! Since Jesse is doing well right now and can take care of himself, there’s less he needs from me. I get busy and engrossed in my own projects too. Jesse is going on 13! He’s almost a teenager. He’s as tall as me now. His voice is cracking. I’m going to blink, and he’ll be a man. We’ve lost so much time to PANDAS. I want to take advantage of the good times as much as possible versus ever taking them for granted. I know better than that! So, I’m going to work really hard at making my kid who is getting too cool for Mom to spend more quality time with me. Haha! I love Jesse more than he’ll ever know…at least not until if/when he has his own children. And I love those future grandbabies already too. I do a lot of the Advocacy I do now for all of our future grandchildren later.
So, Happy Birthday to PANDAS Sucks! I forgot to get a cake!!! I just ate an apple…I’ll count that as my sweet treat. Apples are supposed to keep doctors away too, right? Maybe I’ll have another one just to be safe. 🙂
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Sarah Jane Alleman 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. She is also the Director of Kentucky PANDAS/PANS Support, which strives for more awareness, support, and understanding of PANDAS/PANS. Sarah was a Parent Contributor to the book “PANDAS and PANS in School Settings.” Find PANDAS Sucks on 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.