Welcome to Day 3 of the “12 Days of PANDAS Sucks”!
Every day from December 25 – January 5, you can expect to see a blog post from yours truly. You probably won’t be able to sing the days as a song, but I think you’ll still like it. LOL! However, I will be posting a different version of the song “The 12 Days of Christmas” on each blog. For Day 3, click here for a cool version of the song with Bing Crosby and the Andrew Sisters.
On this third day of PANDAS Sucks, I have THREE WISE QUOTES for you.
PANDAS/PANS is exhausting. It will chew you up and spit you out over and over again. It will take you to the deepest depths because you have to wait for your child’s body to heal itself when you would take it all the suffering from them if you could. You’re also fighting battles with your family, friends, doctors, and schools. PANDAS/PANS will make you doubt everything you know about yourself…doubt everything you ever knew about medicine…doubt everything you ever thought about your capabilities. Sometimes you will doubt the diagnosis or you will doubt the treatment methods or you will doubt yourself as a parent. Here are a few specially chosen words to help you during those times.
If you ever doubt that what you are doing is making a difference…
If you ever doubt that you can’t do what you need to do…
If you ever doubt that you’ve done all that you can do…
Know that you have got this thing!!! And on those days that you are too tired to fight, rest and take care of your PANDAS/PANS child…and take care of yourself too. You can’t pour from an empty cup. There are plenty of us out here that have got your back when you need to recharge before you burn out. And when your child has a good day, take full advantage of it, though it can be difficult to know that it’s a good day until the sun goes down and you realize that nothing bad happened. Take advantage of the good moments. (NOTE: We’re gonna talk more about all of this self-care stuff on Day 10.)
I have been at the PANDAS thing for well over 5 years. Believe me when I say that I am good and pissed off at this point. Why is something so obvious taking so long??? Ugh!!! But I do really feel like the tides are turning. The research is getting there. There’s a PANS/PANDAS documentary coming soon. I see more and more stories that doctors are mentioning PANDAS/PANS as a possible diagnosis. And schools are just gonna have to deal with it at some point because it’s not going away. (Ha ha!) It’s all starting to come together.
Yes, things are looking up for the PANDAS/PANS Community. We’re gonna prevail. And while this is not really a war, it still seems like an epic battle with several fronts that we fight every single damn day. But I really feel like 2016 is gonna be THE YEAR for PANDAS/PANS. It’s gotta be, right? And if not…we’ll keep going because that is what we PANDAS/PANS Parents do.
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We post these reasons in a blog series.
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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.