My Story

Hi, I’m Stacy. I started this website for so many reasons. First, to share information and bring awareness to PANS, PANDAS, and ARFID. Second, to talk about being a parent to a special needs kid. Lastly, to share the knowledge I have gained from this journey about advocacy and caregiver self-care.

Me

So, let’s start in the middle.

It takes too long to start from the beginning and as a mom, we don’t have time for that!

To be honest, my story isn’t that different from anyone else’s. I’ve had successes and losses, but most of the time, I float somewhere in between.

When I started this website, I was smack dab in the “in-between.” You could say that I was in a transition period or several different transitions all at once, just to make it complicated. Between married and divorced, between peri-menopause and menopause, and between patient and caregiver. 

I’ve had the opportunity to start over in a sense, and I’m discovering new goals for a life that was not open to me before. Well, it was, I just didn’t know it. Isn’t that how it goes? At least it’s not too late. It’s never too late for a fresh start? Right?! LOL!

It’s been a few years (it’s Feb 2025 now), and while my perspective keeps evolving, the mission is still the same. And just to add to the mix, some of my own chronic medical issues have decided to make a comeback. So it’s been a bit of a whirlwind being a caregiver, provider, and patient. 

I’m not great at keeping up with the blog (just being transparent), so my plan is to do more short blitzes on Instagram. It’s more my speed. My main focus is promoting self care and patient advocacy. So lets get to it!

What are my new goals? I’m so glad you asked…

Priority number one. My son.

He is now an adult. By age only. I feel like there is still a lot of growing up to do. He is smart as heck and has lofty dreams. But he has been in a holding pattern for many years. He is stuck in a world of an invisible illness, and he hasn’t been able to move forward. 

It’s so much harder because this invisible illness is part physical illness, part mental illness, part young adult (LOL!), and part that we are in a world that doesn’t recognize certain conditions. 

He has an illness called PANS. Pediatric Acute-Onset Neuropsychiatric Syndrome. Let’s just say it’s complicated. One of the main reasons I started this site was to bring awareness to PANS. Since this is one of the first pages I am writing, there will be more to come about this unpredictable and formidable disease. My first blog post is our PANS story. It was a long, bumpy road to get where we are now.

He has another condition called ARFID. Avoidant Restrictive Food Intake Disorder. There are several types of this less common eating disorder. His is more sensory and OCD related. Restricted eating is one of the criteria for diagnosing PANS and PANDAS. 

Watch my blog to see updates and resources as I find them.

Goal number two. Retire early.

When I was married, there was no plan to save much. We made money and it got spent. That was the plan. I had other ideas, and I was a big saver before I was married. Even as a teenager, I worked, saved, and spent money only on things that really mattered. But it’s hard to have a plan for a fabulous financial future when it’s the opposite of your partner’s. I gave up trying to educate him and getting him to see the same future that I saw. So part of this site is about how I am digging myself out of “just making it” on my own to a solid plan to reach early retirement! I hope to share all the steps, the easy and the hard ones, that will help me find that FIRE! I have a much more solid plan now, and I’m working on it every day. 

Goal number three. Finding out what I want to be when I grow up.

Well, mainly my second career, but also my life after divorce. I’m a physical therapist and work with challenging patients. It’s grueling on my own body, and not sure how I am going to be able to do this job until I’m 70ish? So back to plan number two. Retire early. I’m thinking of a combo of semi-retirement and having other streams of income to keep it all going. I am also trying to figure out what I want to do with the rest of my life. My son will recover and go on to live his own life eventually. Well, maybe. I’m hopeful. Then what? So now I get to figure that out. So far, I’m not feeling too rushed. But the clock is ticking…

So what is this website all about?

It’s part advocacy for PANS, part blog/journal/venting(!), and is also combining a platform to share about projects related to financial health and life after divorce while caring for an adult son who isn’t well enough yet to make it on his own. I’m not really sure where it’s all going, but so far, it has all been related in one crazy way or another. 

I plan on sharing resources related to PANS, ARFID, single parenting with a special needs child, medical and mental health advocacy, and hopefully a few laughs along the way!

On my Instagram page, my plan is to share specifically what I have learned about self-care as a special needs parent. I used to put everyone else first, and it has taken this long to realize that it’s okay to take care of myself. It’s essential to being able to keep going.