Today is November 8th, and it is a BIG Day! Why is it a big day? Because it’s time for the November issue of PANDAS Sucks’ series “GR8 ADVOC8 on the 8s.” I’m sure everybody will be tuning into the blog to see what’s up for GR8 ADVOC8s this month. What else could be bigger than that? 🙂
For those of you not already in the know, the GR8 ADVOC8s on the 8s series focuses on ways that YOU can easily Advocate and spread Awareness and Understanding about PANDAS/PANS all year long. I usually give 3 suggestions or actions (I’m calling them PANDActionS now). Mostly the items don’t take much effort but can have a big impact…especially if enough of us start participating. But as always, only do what you really want to do. Never let anybody, including me, guilt you into feeling that you need do PANDAS/PANS Advocacy. Never.
November is Gratitude Month. We could all do with some specific time set aside to be grateful for good things. For November’s GR8 ADVOC8 on the 8s, I’m going to recycle a few previous suggestions that deal with gratitude and saying thanks. Yes, PANDAS Sucks…it sucks big time! But sometimes good things happen between all of the things that suck. We need to be sure that we can keep our eyes open to those things so we can realize when they are happening and be thankful for them.
1. Send a note of appreciation to your state’s Governor if s/he proclaimed October 9, 2016 as PANDAS/PANS Awareness Day. Heck, why just stop at your state if it participated in PANDAS/PANS Awareness Day? You can send a thank you to all of the states that made proclamations! Here’s the final tally for 2016…23 states: Kentucky, Illinois, Massachusetts, Missouri, Arizona, Michigan, Connecticut, New York, New Jersey, New Hampshire, Virginia, Nevada, Delaware, West Virginia, Indiana, Ohio, Wisconsin, Rhode Island, Minnesota, Oklahoma, Missouri, Washington, Maine. And our neighbors up North: Saskatchewan, Canada. Plus Miami, FL. Woohoo! Y’ALL ROCKED IT!!! A few other states applied, but proclamations were not granted…some states just say no. Write and say THANK YOU to the Governors who said yes. Find the state office info here.
How is this PANDAS/PANS Advocacy? Saying thank you is always a nice thing to do. Thanking somebody, especially a public official, for helping you in your efforts of PANDAS/PANS Advocacy is GR8! (See what I did there?) And yes, it might have been a staffer that actually di the work to get the proclamation declared. Check with your state’s point person and get the staffer’s name and thank him/her too! Sending these thank you’s also puts PANDAS/PANS on the government official’s mind again. It can make later efforts for PANDAS/PANS Advocacy at the state level easier. Baby steps…it’s always baby steps.
2.Send a Thank You to somebody that has gone above and beyond in helping support your family’s journey in PANDAS/PANS. This might be a doctor or a coach or a teacher or a family member or a friend. Okay. Now, get out a piece of paper or open your email app, and send that person a Thank You note. It doesn’t have to be long, but write it from the heart to tell them how much you appreciate all that they have done for you and your child. It can actually be somebody that maybe hasn’t helped you personally but helps others in the PANDAS/PANS Community. Showing gratitude to all the doctors and researchers and official advocates/groups/organizations is only ever going to be a good thing. That picture shown is actually a stack of thank you cards that I started filling out today. (The trick is to finish them all and track down addresses and mail them! Yes I can!)
How is this PANDAS/PANS Advocacy? Everybody likes to get a thank you. For folks that help out PANDAS/PANS children and families, it is nice when they are acknowledged. It only takes a few minutes to show somebody that you noticed their caring and compassion and appreciate it. It’s a way to find a sliver lining in PANDAS/PANS too. You’ll get to feel good too when you send that email or drop that letter in the mail. Showing your gratitude will go a long way.
3. Submit a PANDAS Silver Lining you’ve found. Yes, PANDAS Sucks, and we talk about that A LOT!…but good stuff still happens too. You might have to really look for it, but don’t lose sight of it. The new series “Your Words: PANDAS Silver Linings” encourages us to “Find the Light in our Dark Days.” Click here to make a submission. It might be a life lesson, your favorite quote or scripture, or a poem that buoys your spirit. Or maybe you met somebody awesome or found your own strength or your child had made huge strides in recovery. Or you might have just had a great day and want to share the details. I asked about PANDAS Silver Linings on the recent survey and got 125 responses. Some of these folks were saying that they had not found any PANDAS Silver Linings yet, and I get it. I struggled with this a lot too, and I still do sometimes. My hope is that for all of the awfulness that everybody deals with inside the belly of the beast that is PANDAS/PANS that there are awesome things that happen too in order to give you some relief.
How is this PANDAS/PANS Advocacy? You’ll be helping yourself AND helping others when you consider and share your PANDAS Silver Linings. You never know when your words of encouragement will give light to somebody’s darkest day. I publish the PANDAS Silver Linings periodically. Feel free add your good stuff to the list. You never know who will read what you share and have it resonate. And I will point out that you can also read the PANDAS Silver Linings to help in drawing your own strength. <3
Update on Last Month:
You can read the October GR8 ADVOC8 Post to see the suggestion (usually there are 3 but October had only 1 suggestion).
1. Complete the State of the PANDAS/PANS Community Survey. For October, the only advocacy suggestion was to complete the State of the PANDAS/PANS Community. Over 250 of you completed the survey from all over the world. I’ll be tabulating the results and reporting them soon, but it will be after the blog redesign I’m getting ready to do. Some of the results are going to be shared with folks that need to know them…and shared very soon. <3 And THANK YOU for all of the “PANDAS Sucks Because…” reasons and “PANDAS Silver Linings” and blog post ideas! And if you indicated that you were interested in writing a guest blog, I’ll be in touch at a later day. Thank you to everybody that participated to help tell Who We Are as the PANDAS/PANS Community and to get your voice heard. (******NOTE: THE STATE OF THE PANDAS/PANS COMMUNITY SURVEY WAS CLOSED TO RESPONSES ON 10/31/16. THANK YOU FOR YOUR PARTICIPATION! THE RESULTS WILL BE TABULATED AND REPORTED IN A FUTURE BLOG AND IN OTHER PROJECTS.******)
In the spirit of gratitude, I would like to send a shout out to all the PANDAS Sucks Readers. I’m grateful for you and want to say THANK YOU for all of your support and participation. You are all one of my PANDAS Silver Linings. I’m happy to operate this blog for such an amazing Community as a means to tell our collective story to the world. There’s nothing like connecting with other PANDAS/PANS Parents. I met some of y’all at the PANDAS/PANS Conference last month. You all ROCK!!!
Tell us why YOU think PANDAS Sucks. Click here.
We post these reasons in a blog series.
Have YOU found a PANDAS Silver Lining? Click here.
Want to send a message to Sarah? Click here.
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.