I Am Coming Out (part 1)

Out of what, you may ask?

Out of a daze. Out of my Mind with a Capital M (the bad part). Out of prison. Out of silence. Out of an incredible personal crash.

I am coming out to tell the hidden story, the invisible trauma of PANDAS. The devastation of a mother's soul, and the journey back.

I've been afraid to tell this story except to a very few brave humans who have tried to hang in there with me. Its a story I must tell, I must speak the words out loud to another, for it to make any sense, but I see that the burden on those few remaining friends and family - its too great. It hurts them. My story is simply too much to bear and more than any mere mortal should have to, except myself. And I shouldn't have to either. I am sorry for the pressure I have put on anyone to listen to me, to understand me, to throw me some humanity when I got so lost these last couple of months. So, hopefully, anyone choosing to read this blog will find themselves able to stand for me, and to hold a space of light and possibility for the untold many just like me, trying to build a bridge back into the land of the living.

If you are here, reading this, you are on a PANDAS journey of some kind. Perhaps you are in PANDAS hell and desperately looking for solutions to your child's health issue. Perhaps you are struggling to hold onto a shred of personal sanity. Perhaps you are a friend or a family member trying to help, trying to understand what the heck happened to your friend and their child, or children. Where did they go? How did they fall off the ends of the earth? Perhaps you are on your own road to recovery. Perhaps you are one of the fallen, you left your family or your spouse or your friend because you couldn't handle the darkness any more and you didn't know what to do, or if you could trust them anymore. Perhaps you know me from a facebook page or perhaps, even, I take care of your child. For any of you, I hope there is something here that helps you find your strength in whatever way you may need it right now.

FIRST, AN UPDATE:

My son's journey fills these pages. Your child's story may as well.

But the best is now here, and more of the best is certainly yet to come.

Lance continues to be well. Its over a full year now that he has had any flare symptoms! A FREAKING YEAR, do you hear that?? A couple of weeks ago, he had this incredible flu bug that was going around, it ran through him like a freight train. He had a fever of nearly 103! The first fever he has ever run since he was 10 years old. He called me at work, sobbing, he thought he was dying, seriously. He had incredible chills and you know, that feeling of fever, the skin crawling that feeling. Well, he didn't know that feeling, he hasn't had a normal fever that he can recall, so he literally believed he was dying. He couldn't believe it when I said hello, this is a normal immune reaction! A fever! Wow! Then, despite all of it, not a flare, not a tic, not a nothing. He is really better. His brain is healed. His BBB is sealed. He got a fever like a normal person. Not by accident, that's for sure. The work it took is on these pages. He still takes lots of supplements but more foundational support, antioxidants, and healthy fats, lots of healthy brain-restoring fats. Phospholipids, omega 3's. Lots of B12 and active B's. Allergy stuff, probiotics. I give him Zithromax twice a week, and mostly because I'm afraid I bring germs home to him and expose him all the time to the nasty strains of PANDAS strep that children bring into my practice.

Lance just graduated high school, with a 4.3 GPA and a full scholarship to the school and program of his dreams, USC, the Annenberg School of Communications. He is a true success story. And there are others. If you are reading this and your child is devasted with PANDAS/PANS, please please please do not give up.

People are saying to me, oh you are becoming an "empty nester", you poor person, however shall you cope?? Many parents of graduating seniors are sad their child is leaving. So I keep expecting to feel this incredible wave of sadness. But I DON'T, how could I? I just feel HAL-LE-fucking-LU-JAH!!!!! OMG, I feel tremendous gratitude and relief, that he made it at all, that we made it here!! Lance is well, he going off to school as a healthy normal 18 year old. What could possibly be sad about that?? What could be better? I feel so much pride in him. I feel total awe of what he has accomplished. I feel incredibly jealous of his youth, and of the world being so freshly at his feet. He is entering this time of life so ahead of where I was when I went to college. He is so present, so emotionally intelligent, so deep and centered within himself. I feel nothing but confidence that he will thrive. I am not the least bit worried about how school or life will treat him. He got over PANDAS, he can do anything. The world will work its magic on him, and he will work his magic back, because he has integrity and self awareness, and calls forth amazing things and that is simply who he is.

I Am Coming Out.

As for me, in the not-too-distant-future I am going to have alot of personal space and I need it, desperately. I crave it, to be honest - I can't wait. Of course I will miss Lance, my sweet baby and big boy, but I need my personal renaissance and I need it now. I remember when I used to also call forth amazing things. Hmmmmm. Every now and then I sense a little glimmer of space, a memory of a geater perspective. I am so hitting the road. I am so going to the desert. I am so moving forward, I am so ready to explode out from the little world, the teeny itsy bitsy world my personal life has become.

My personal life could fit on a pinhead. There is a narrow little pathway in and out of my house, that goes very few places. Work (which I am blessed to LOVE), then a number of grocery stores are on the path. Freaking Target. A couple of coffee places. The bank. Lance's school, oh...his old school!! Oh, the gym, and Ragle Park. But that's about it. Its a very short and narrow path. Do you know I live a mere 4 hours from Yosemite and I have never once been there? A mere 20 minutes from the Russian River and I have only been in it one time...and that was a couple of weeks ago...and we have lived here for 8 years??? Seven years of hell, and now, something changing.

So I am coming out. I am becoming clear on my personal journey and I am going to share it. PANDAS moms joke all the time about our collective PTSD. But I assure you, that PTSD is no joke. The collective human toll that PANDAS has created is so beyond what you think. Not just the children, the illness, the awfulness of that. Not just the broken marriages and families. Not just the lost friends, the lost homes, the bankruptcies, the medical disenfranchisement, the isolation, the lost years of happiness. Its the soul busting, heartbreaking, psyche destroying effects that linger, beyond what can register at any given moment while you're going through it, but what I have found coming back to haunt me at a time when my happiness should have been peaking.

This is the story I am ready to tell on these pages. Lance's story is my story, and my story is his. And possibly yours. I am sending you incredible love and hope that as I tell you what I am now learning, it will help you in some way to be a better person to yourself and to forgive yourself for anything you believe you may have ever done that is not enough to help your child. You are amazing. You are human, only human, we are human and the mystery is beyond our comprehension. it will get better.