Thursday, December 25, 2014

Pain and Hope Heard Around the World

Dear PANDAS Mama, Papa, Friend, Sister, Cousin et al:

Holidays are the worst when your child is sick. The worst. Darkness. Unbearable. Loneliness on a scale that most people never get the privilege of enduring.

Holidays perfectly reflect the absolute loss of goodness and innocence that accompany a PANDAS life.

So if this is where you are, please know that I know. You are seen, you are heard. You may feel completely devastated and invisible in your devastation, but there are thousands of us out here, standing with you and holding you from afar.

I wish we could hold hands today, all of us together, around the world, in our pain and in our hope for better times to come. Or lack of hope. And anything in between.

So just know, that whether seen or not, felt or not, there are many of us out here, together and completely alone, reaching our hands around the world to find and send strength to everyone that needs it; to hold each other up for just one more day; to envision our children in a brilliant light where health and goodness and innocence are fully restored; where our incredible personal and financial losses to this illness are fully replenished; where our collective heroic journey is somehow mitigated and celebrated.

Our rage, dispelled.

Our own innocence - our lost dreams of a happy life - somehow reborn.

Our souls, redeemed.

I love and see you, all.

Thursday, December 4, 2014

Happiness

Dear Friends, Yesterday the most amazing thing happened.

It was brewing all day, really, all week, kind of. And it occurred to me, while I was taking a walk last night in the very warm pitch black night, it occurred to me that I could name this bouyant feeling...dare I say it..happiness.

I'm having happiness. I'm still almost nervous to say it in the other way I'd like to say it...I feel happy.

I feel happy. For no reason.

Bouyancy. Lightness. Desire to engage. Happiness! I remember this!! Its my authentic nature, just right there, out in the open, in the black night, for no reason.

I am not promising anything. I am not promising I will stay happy. Maybe this is just a moment of grace...well, happiness is grace. Its this open connected place that is just, pleasant and present and available and open.

Thank you God and Universe for allowing me to experience this day or week or moment of grace and happiness, and to remember that I am wired to be happy. THIS IS OUR NATURE. I just had forgotten, of course. Of course I forgot, I was so so buried for so long. My brain was overcome with the breakdowns of a life in PANDAS hell.

But I'm not permanently damaged...and either are you.

Our PANDAS journey took nearly 8 entire years of life. Terrible life. I was afraid I was so physically and psychicly and emotionally damaged - especially with all the PTSD and panic attacks that flooded my brain this past spring and summer - that true recovery was beyond me. Or at the least, would take my entire rest of life.

But I'm not damaged like that. And if I'm not, you're not. The human spirit is a powerful triumphant force, the most powerful force on this earth. Directed, it can move mountains. Directed towards our child's healing - it can and will and must conquer. Directed towards our own healing - it must do the same.

My happiness coming back is not an accident. My son is better, that is the key. And I have been on a quest for it all year. I have prayed, I have wracked my brain, I have been to the desert. I've been in therapy. I have tried to take better care of my body and hormones and nutrition and diet and to honor my need to be outside. I gave myself relentlessly to my work and to the care of children with PANDAS and with lyme in a space I hold to be the space of creating miracles. I worked and focused on all the positives in my astrological reading, and in the gift of an amazing channeled message that I recieved from my mom. I chose to believe in the promise of a new life. I've been to the east coast twice and imagined myself living a new life in a happy place with people like me. I put myself in a Landmark Seminar (first one in like 10 years!!), which just has been giving me access to a great conversation with other people powerfully committed to living a high quality of life. I've seized onto every good feeling I have had and named it and blogged it and tried to expand it with gratitude and focus, lighting up better brain pathways and having faith that they will gain in strength and momentum over time.

FAITH, there it is. Faith that my true nature would be restored to me at some point and letting go of the need to know and the need to have it now, and rest assured in the signs shown to me, that it will happen and all I had to do was to take care of the moment.

Well, here I am. At least I'm in the window of happiness and I can only imagine and expect it is a sign of amazing things to come:).

I wish you, if you can't reach a moment of happiness today, which I understand is just so far when your child is so lost and so sick...then I wish you a moment of at least knowing that no matter how bad it is, you are not permanently damaged, and you can at least believe that you will come back, and your child will come back. Please be brave and be a guerilla in the war against your child's PANDAS.

I can't wait for whatever my next post is:)

LOVE AMY

Saturday, November 15, 2014

Hope and Transformation; A Life Beyond PANDAS

How is Lance?

He's fine! He's great, he's happy, he's out there at school living his life. He's had a series of colds almost the entire time it seems he's been away, so like, for 8 or 10 weeks. He says everyone has them. I think it may be the smog down there. I'm sending him an amazing air purifier (thank you CARMEL) and I think it will help. Plus I just revamped his supplement program to strengthen his mucosal immune response and reduce histamine. But the main thing is - no PANDAS no ticcing no flares.

What more can I ask for? What more do you need to know about him? That's about it, really. He's amazing and he still seems well.

OK, how am I? I'm great as well. I'm changing, I'm healing and shifting from the inside out. I can't believe its been about 2 months since my last post. Its because I needed to let life work through me before knowing what else to say that would be meaningful.

One thing I can truly promise you, dear PANDAS mama and papa or whomever else is looking at this blog and praying for some hope or inspiration: There IS life beyond PANDAS. Of that I am now certain. I have dipped my toe in the waters of the future, of life outside of the prison that held me so tight and so far away from the rest of the living breathing world for far too long. I still feel like I just crawled out from under a rock, like I've missed something, alot of things, alot of living. But I'm alive. I actually feel - good. And I notice every day, the simplest things - that I'm singing to myself. That I feel more awake and clear headed. That I love the wind. That I'm going out some. That people just say hi to me again, a simple thing, like the person in Trader Joe's today, just chatted away to me. And me, playing back. Playing. That's who I am, but I forgot. I'm actually incredibly playful. Ha! Who would have known this? How could I have even remembered? For years, and even until very recently, I was completely invisible. No one ever said hi to me, because I was just, invisible. Numb. Old. Dead, really. But now, I notice that I am back to being playful with just no one in particular, just, on the street, in the store, in the airport. I'm not as afraid, and I'm not invisible.

This is HUGE!!

And I still don't know exactly my next step, but I no longer wonder IF there is a future for me, if there is love in the world for me, if there is a place for me. I only wonder, now, what it is and where it is and what its going to look like. And I do pray to God I recognize the signs and steer my ship in the right direction...

This is a gargantuan leap for me!! I was broken, bereft, destroyed on every level. So many times I had wished I was just dead. That God would just take me because the pain of living in PANDAS hell, watching my child's life be ripped from its hinges, watching him sink into this bizarre illness with no understanding of what it was or what to do for just so long, then battling our way back. Losing everything, like so many other PANDAS families - dreams, house, security, friends, marriage, sanity. UGGGHGGHGHGHGHGHGHGHGH.

My heart goes out to every single one of you out there right now and forever. IT WILL GET BETTER YOU MUST HOLD TO THIS ONE THOUGHT IT WILL GET BETTER IT WILL.

Last week I gave a presentation to over 200 school nurses on the East Coast about PANDAS. How to recognize it in students, and how to set up the kinds of accommodations and supports they might need in schools. How to case manage PANDAS. Can you believe that? There was so much enthusiasm there. Nurses, of course. It makes sense to me that nurses could be the ones to turn this disease around in the minds and hearts of the medical community. Nurses are the Heartbeat of the medical system.

Imagine if you would have gotten a call from your child's school nurse, saying hey I notice your child is having a hard time, I think maybe they have PANDAS. Here is a referral for someone who can diagnose and treat your child if they have it. And here is how the school community is going to help and support you and your child...

CAn you even imagine? But this is where things are going. There is still tremendous hard work ahead, but at least there are signs of progress and hope. Heaven knows we need it.

Also these journal articles are really a big deal, so if you haven't seen them in the Journal of Child and Adolescent Pharmacology, and printed them off for your providers, here is the link to them on PANDASNetwork.org. These are strong academic and clinical consensus papers that can help turn the medical tide: turn a non-believer pediatrician into a PANDAS provider or at least a PANDAS-friendly provider. Please, use them, print them off or better yet, purchase one of the journals through the PANDASNetwork webiste so you have all of these important documents, and pass them around to everyone you know in the medical field that may encounter a child with PANDAS - which is everyone.

At one in every 200 children, I consider PANDAS a high-incidence illness. Everyone sees them but does not recognize them. How do they stack up against the most common pediatric illnesses? Juvenile Diabetes type I is 2-3 per 1000 children, and look at the attention and resources poured into that illness and school supports. Students with severe visual impairment? One per thousand. Sickle Cell Anemia? One in 500. Cystic Fibrosis? One in 3700. Cerebral Palsy? 2-3 per thousand. These are some of the most common chronic childhood illnesses!

SO...PANDAS? One in 200 children. What are the implications of this?

Children with Mental Health Disorders? ONE IN FIVE CHILDREN in a recent CDC publication. Children with developmental disabilities - 1 in 6, including learning problems and spectrum disorders.

When did this happen to our children?

While it may be little consolation now, this is such a better time to have a child with PANDAS than say, 2006 when Lance had his big break. You could google "sudden change in my child" "overnight ocd or tics"... and PANDAS did not come up. I should know, I spent over 3 years scouring the internet, all night every night. Now, at least, PANDAS comes right up. You still have to be the one to consult Dr. Google, you have to know enough to look it up yourself. You have to know what to ask. And that also has to change. But overall, compared to how it was, there is greater awareness and greater access to information. There are way more doctors you can go to, even if you feel there is no one to go to, its many times greater than what was available just a very few years back. Or just one year back. According to the parent survey we did at the Parent Symposium earlier this year, there is a definite reduction in the time it takes for a child to recieve a PANDAS diagnosis from their symptom onset since 2012. Of course that number still has to go down to less than 3 days in my opinion. Thirty-five percent of the respondents' children still took over 3 years to be diagnosed, but there were also 31% diagnosed in under 6 months compared to a much smaller number in 2012. Still, just the fact we are measuring in increments of "less than 6 months" is a crime.

As for me, I am clearly in this for the long haul and I don't care what it takes. This week I am tackling administering IVIg to an entire family - three children, all true PANDAS. That mom? Exhausted and loving. A saint. PTSD to the max. They just sold their house so that they could afford it.

I will never stop treating PANDAS until its over. Every single day practically I am learning something new about brains or inflammation or strengthening mucosal immunity or locking down the BBB. I just need to keep my brain strong and my body healthy. I will spend whatever brain cells I have left figuring this mess out and I pray, dear God, I do it with happiness and joy, and love, and with the feeling of being home and being somewhere and with someone i know i belong with. With a healthy child whose life continues to unfold freely and openly and with resilience and knowing the future is open and bright.

Please do not give up.

There is a future for each of us. For you and for your child and family.

PLEASE, decide to make it through another day. Reach out, do whatever it takes to remember that there is truly hope, there is truly life beyond PANDAS.

Sunday, September 14, 2014

The Unfolding

Yesterday an amazing PANDAS mom gifted me a session with a brilliant astologer that reads energy and life story in a chart the same way I read blood, with depth and insight and a level of integration not available to the common mortal.

She told me that my chart is just so difficult, its a karmic life. My stars have given me a soul path like Persephone, endlessly going down into Hell and back. Yeah, well I would call that difficult. But (based on this reading) my evolution, like Persephone, is redeemed by bringing the light and understanding I gain from my moments of freedom back down into the darkness to share with others, and then the Hell lessons back up to share in the light with others. That my life is this path, a healer's path, and my teaching is my personal lessons learned on my journey. And that I will share them and write them, and bring to others my ability to put into words, the depths and the lessons and the emotions and the dark narrow spaces in ways to bring help and freedom and healing to others. She told me all this without even knowing anything about me, and I would say it describes my life exactly. And that I will always teach what I have learned from my own personal Hell, and that my saving grace is this thing called a Trine, this profound watery fluid heartspace that gives me the capacity to hold the difficulty within a humongous compassionate lake of love and transformation. And that I can love with a tenacity that heals and forgives from the depths, a profound, extraordinary love. A healer's love.

She showed me where my chart is ripe and rife with the pain of abandonment and isolation issues, doing it alone, going it alone, and that i will always, when under enough pressure in what she calls a "trance" state, default by pulling into my self and feeling alone. And unsafe in the world, always looking and searching for my place, my safe belonging place. :( THIS is so true.

And that my whole life was set up to heal my child, alone, because I could, because I would, that's the likely way it would have happened. That my journey is so about healing the mother wound. My mother wound. My mother's wound. My wound as a mother. Our collective Mother wound.

She showed me where in my chart lives another of my greatest challenges, which is having any idea how to express a need in relationship with others, how blinded I am in even perceiving a need to my own self, and that by the time i can even perceive it, I am already in such dire emergency but have zero idea how to ask, either ever, or until I have already broken or left. And then, SAYS MY CHART, where I go within myself when my needs don't get met, is a tortured karmic place. THIS IS HARD WIRED by my planetary configuration!!! Or, soft wired, lets say. OK, so its not my fault. Can you believe that??? Its is a Huge Thing, right there in my stars, that I have come to transform and heal in my lifetime.

This is so true for me. Its a weakness and a problem that I have, and interestingly, something I have found I can solve to some degree, through Facebook. I ask my FB community to be there for me, because they are, and because i can voice it better in writing (oh well, just ask my ascendant ;-), in the both personal and nonpersonal way that FB is. I can still hide while asking for support, Yay Facebook, problem solved. It is about the hardest thing I can ever do to ask another person for support especially if its something I really really need. And especially to ask in person. Or if they simply offer, I have to say No No No so automatically i wouldn't even remember the person ever offering, it doesn't even register. That's a trance-state. Oh, I know, I should be beyond that, right? Safety outside of myself, not my best suit.

If you are a person in my life I have ever asked anything of, well, that says alot about who you are for me. THANK YOU for being that safe for me.

Or if you have been willing to be there for me, or contribute to me, whether I said yes or no...I thank you right here right now, for being that for me.

If I did not let you be there for me, and you were and I could not see that, I am so sorry please forgive me. You likely saw me struggle unnecessarily, or break, or I left. Either way I left you standing there, with a hand out, and I forgot to notice. I'm so sorry. Sigh.

She showed me just how wired I am for my body and senses to be exquisitely sensitive. Visceral, vibrational and kinesthetic. Everything comes into me through my body. Way before words, I feel and respond on a cellular level. I think this is why I am so sensitive to things like toxins in my body, and the vibration or energy of a place or person, or group of people. Like, my body is a vibrational hub that reads life for me. I've always known this but thought that it is just an adaptive response from growing up in an abusive household, you know, always read the energy and get out before everything erupts. But, this wiring predates that, and likely allowed me to survive the way I did. And its why I can read blood and bodies and chemistry the way I do, i can speak that cellular language in a unique way. I so get that. I can see why and where in my chart I long for and seek out resonance, and why I can spend hours or days in the wilderness, lying on a single rock or in a tree and just listening to the hum of the world, while wisdom and balance just flood into me and tune me up. I know I must trust these intuitive feelings no matter what it looks like on the outside. Well, I used to, and then I got so bogged down by this PANDAS thing, the personal resonance became a burden, so i tried to cut off the need to make it feel better. but still, this is the gift that gives me power in my exam room, and reading blood chemistry, and figuring out the metabolic monster that is PANDAS.

But wait - there's more! Here's The Best Part!!

My future is an open door. At this very moment, the heavens are conspiring to bring me healing and clarity, and for this I could not be more grateful!!! Like, the universe has literally lined up and opened up a door for me!!!! For me!! Can you believe it? I am in this transit called a second Saturn return that realigns and amplifies love and personal truth, at this very moment it is moving towards peaking in these next several months and will help me re-create a genuine life for myself. I KNOW THIS, I FEEL THIS. I have let go of so many things that were weighing me down. I often feel light and free and inspired, and its been so long since I've felt that way. The exile is over. And, there was something in it about finding PLACE. Place and HOME, my biggest unsettled issues, my greatest losses. Where is my home? and who are my people now? Where do I belong? Where is that safe place? I am so ready. Of course, I own that my exile was self imposed. Blind-self, yes, trance-self, but still, I colluded to bring myself down.

I literally said yes to moving from a home I did not want to leave, from the people I loved and did not want to leave, to travel 3000 or 3 trillion miles out here to the literal and figurative Wilderness, where my husband just had to be. I did it to save him. Because till death do you part. But now I realize its not just a physical death and then you part. No, it could be death on many levels. Emotional, psychic, energetic, financial, sexual. However much you are willing to kill off of yourself to save your marriage. Until you have suffered enough or are dead enough that you feel the world finally gives you permission to leave, if there is even anything left of you to leave.

I killed myself, by misunderstanding the signs, of what was called for in that moment. By my willingness to ignore what my deepest heart was telling me, I abandoned my life and myself as a human being. My entire body was screaming, for months, not just minutes or days or hours, but months - DONT DO THIS DO NOT SELL YOUR HOUSE DO NOT LEAVE YOUR PLACE but I did it because that was what my husband wanted and i justified it and thought, ok, I can make anything work. This was one of the most personally destructive things I have ever done. Till death.

I couldn't see what my stress and misalignment were doing to Lance. I kept trying to overcome it. I couldn't see that my longing to go home was actually an indicator telling me I could and should do that. I disempowered myself and sold out my needs and perspective to my husband's. And Lance is angry at me about that, well, not as much now as he was last year when we first talked about it. As he got better, and was able to look back and reflect on what the heck happened to us. He was mad I had been so stressed and unhappy, he was angry that I stayed with his dad who did nothing but create misery for the two of us. And I thought I was doing it FOR Lance, keeping our family together. He couldn't believe I would not follow my instincts and get us out of there. I hated it but felt so stuck, in my marriage, in this town. Trapped. And no matter how much I had tried to hide that from him there was no way. And I could not ever justify to him the part of me that sold us out like that. I could only try to explain my blindness and ask his forgiveness. And my own, that's even harder.

THERE IS NO WAY THAT YOUR CHILD DOES NOT KNOW HOW STRESSED AND ISOLATED YOU ARE.

Well, not like I didn't have a million reasons. I could justify my stuckness and my fear with reasons. We were totally broke, for one thing. Medical expenses, bankruptcy. From the nearly half a million$ I had in my personal savings when we moved here, not even including our family savings - plus the home we lost and everything else. I was absolutely exhausted most of the time. Lance's healthcare support was out here. His incredible high school, Sonoma Academy. Not like we didn't have some awesome people here. We just didn't belong here and I used every reason I had to avoid facing whatever it was I needed to face to get us out of here.

Sigh.

Here is the take-away lesson for you, dear PANDAS MAMA OR PAPA WARRIOR.

DO NOT GO DOWN WITH THE SHIP. Do anything you can to connect. ANYTHING.

Have the COURAGE TO FEEL BETTER. It is GRACE. It is deserved, and not deserved, at the same time. You will heal your child's illness AND emotional wellbeing from a place of love and balance better, than the devastation you feel right now.

REACH UP and OUT REEEACH OUT!!!!!!

I am unfolding and I am priveleged to share my journey with anyone that is helped by it in any way.

I am healing. I have had incredible insights and am willing to lean into the promise of this planetary moment for me, if that is where i can find validation and confidence and strength, to move forward and out of exile and into an unknown future that, while I believe it holds love and belonging (and something about Leadership in a huge way, she said...) for me, it still is shapeless and empty except a little glimmer of hopefulness and that's all, that's it. Its still a void, a black hole. But I have to go only by a gut feeling and let that lead me to wherever feels better, and that will be my next step. My next step may be an interim step, just to get to a place I feel better and from there, the rest will unfold without so much pressure.

If you are a PANDAS parent, please find a way, today, even for a few minutes, to put your pain away and create some joy in your home. Everyone will heal better, faster, through joy, than through pain. Including your child, and your other children, and your spouse and most certainly, yourself.

I wish you much love and success on your journey.

Wednesday, September 3, 2014

Holding My Breath....

OK, Lance is at school for almost 2 weeks, and he has a sinus infection. OK, that's normal, but sinus infections are not good for PANDAS kids.

Ever since Dr. Dritan Agalliu from UC Irvine presented his mouse model at the Northeast Conference last November - of how the strep actually breaks through the blood brain barrier by penetrating from the infected sinus directly into the brain - I am very suspect of and aggressive with treating sinus infections in PANDAS children.

So now he's at school, and I'm here, like 500 miles away, unable to personally assess his situation.

And it should be fine. I sent him some colloidal silver sinus spray to use which he should definitely receive by tomorrow, and he's been using salt water neti pots twice a day in the meantime, and I know that helps.

but still, it does scare me. I haven't asked him if he has any tics, I'm afraid to ask him. I think he would tell me if he's having a problem. This is likely a normal thing, a sinus infection, and it will go away, and he'll move on without anxiety or tics or any of the other related stuff. Right???

So I'm feeling some of that familiar worry, I haven't felt it in awhile. Is his blood brain barrier strong, and healed? Or is it not? I will certainly find out, soon. And i can only think, although I feel anxious about it, I have to believe that he will be fine, he's already proven that he's fine. Right???

I think as time goes by, and he gets routine illnesses like this and doesn't flare, I will simply forget to worry. Is that possible?

Sunday, August 24, 2014

The Courage to Feel Better

I just wanted to take a moment to reach out to all the PANDAS/PANS mamas and friends out there.

I am hoping and praying for each of you, that you too, can have a child be well enough to go away to school, or go to school, or have a dream that they can live into. And that you can live into, your own dreams, again.

I want that for each and every child and family struggling with PANDAS/PANS and I will never ever give up on treating any child, or reaching out to a mom that feels crazy and isolated, or teaching a provider how to treat, or wracking my brain to figure out the next steps. Clearly it is the work I have been made for and I am in it for the long haul.

And while I hold out tremendous hope for my child, and for Our Children - well, its not that I don't have hope somewhere for myself, but there is something wrong or let's put it this way - something I have yet to recover of myself from the damaged sustained over the years of our PANDAS journey.

PANDAS did something to me I haven't fully figured out but I will. There is still a particular vulnerability around feeling abandoned that blinds me in moments to say or do things that are not right, they are not me. let me qualify that - they are not the normal me, the right me. They are a weird aspect now of me, an odd damaged part of me, that simply feels abandoned, incredibly judged and ostracized and I can't explain it more than that. But I will. I think there is something that still needs to be revealed, that I can own about it so I can free myself of it.

The Part of me that is a PANDAS victim - it has to go. I have to find all the pieces of myself that were... I don't know, locked up? Damaged? Whatever it is and pull it back and find my power again in there. I don't know how else to say it. I don't know that its PTSD still but maybe it is. I don't know if I am permanently damaged in this way. if i am, well, I am. It will make the rest of my life hard, and loveless. I just don't know.

Its not like, when PANDAS happened, my life was a blank slate. By the time someone is 50, there is no way we have not been heart broken, raked over, had our share of drama, wrestled with the ups and downs and the meaning of life. Otherwise we simply have not lived. So I must say that the damage of PANDAS occurred upon whatever i already had going on.

Abandonment? Well, that was an issue for me since i was a little girl, and i had good reason for it. Over my life, with alot of work, i thought i had worked that out. But the massive experience of abandonment and isolation that comes with PANDAS territory, it must have triggered some old karmic or psychological or damaged part of me, and that is the piece that has yet to come back, the part where I see and accept the love and the friendship that is in front of me. what is that? why do I get into such small spaces and lose perspective like that, and feel compelled to communicate or take action from those places? how can i be so blinded? what happened to me?

Well, as a well-intentioned, intelligent, relatively evolved person with a big heart and a commitment to live life on the high road, I have to believe that this piece of me can even ever be sorted out, or healed, or understood in a way that gives me power back over it. i can only pray and hope and work towards this end, where healing happens and i am again - in my own unique way - in the experience of belonging to the human race. and that i don't have to hurt anyone, or anyone else, in the process. and anyone i have hurt, by not seeing and accepting your love and friendship at face value, I am sorry.

And meanwhile, one thing I have learned in this journey is that revelling in the bad feelings helps nothing. It only makes my thinking worse, less accurate, and less reality based. It takes courage to feel better. It takes courage to inspire myself to lift my energy.

So, I'm sharing with you a fun way I've recently been keeping myself inspired, in a moment where I feel the need to lift it up. Its so important to do whatever it takes, no matter how bad you feel - find a way to keep your spirits lifted! Your depression and isolation and fatigue are so understandable. But remember that they do nothing to help your situation or your child, or your marriage or anything else. So, if you possibly could muster up the courage and the energy it takes, to just make yourself feel better for one moment, the next moment will be better, too. Never ever give up on yourself, ever, no matter how hard it is right now, you can and will and have the right to feel better.

Need some help to lift your spirits? Click on the link below and turn up the volume:

That's Life!

In other words:
We're all up, we're all down,
and regardless of what's come before
I can be grateful for this one moment, in the Present
with its endless supply of new opportunities for healing and inspiration
and for the courage to begin again
- Because That's Life.

Any PANDAS mama's anthem. I dance around my kitchen to this song.

And OK, because I know how hard it is, I'm going to share 2 more very personal links I have treasured over the years that never fail to get me to smile and open my heart - Lance would be like, oh no are you watching those videos again?? and I would just nod my teary (in a good way) head and say, yes, yes I am, again. BUT CLICK ON THEM - have the COURAGE TO JUST FEEL BETTER FOR A MINUTE!! Fiona, a Blind Dog Living in a Trash Pile and her Amazing Rescue and sight restoration (you will watch this again and again and again believe me.

A Special Dance to GREASE It is so old its not even digital, but I just love it...

CLICK ON THEM I PROMISE YOU WILL FEEL BETTER. BE STRONG AND LIFT YOURSELF UP.

Sending you Love Strength and Courage, and a LIFT, Through the Airwaves
Amy

Sunday, August 3, 2014

An American Girl, and Boy

My son, my incredible healed son, is going away to the college of his dreams in 12 days. Its hard to believe that just one year ago, we didn't know for sure that he would even be well enough to go away to school, and now, here he is. I'm just so thrilled for him, for that he has this chance at his version of the American Dream.

And its starting to hurt, too - the realization that he is actually leaving, but I'm so excited for him. And no matter how much i will miss him, i'm knowing that this is the best possible thing for him on the planet! and for me, too, to have this chance to regroup and reboot and figure out who the heck I am now, after all these years of his illness and now, his healing and moving onwards. And I couldn't be happier about that either. But I'm crying, now, too, its just now hitting me. All this time, i'm like, so excited, and so proud of him. and then today, we started packing him. And its sinking in I guess, that I am sad, and up to this point i had the idea that I might be sad, but not the feeling. Now, i'm feeling it. Who knows what this part of the journey will be like? Probably, everything. Joy and pride and sadness and missing and excitement and adventure and more missing and more sadness. And I hope just lots and lots of juicy fun, i need a juicy happy future, i need it and i need to believe its there for me, somewhere. My American personal dream.

Its amazing how as soon you start feeling bad or sad or whatever about one thing, it colors everything and it all starts to snowball. So now I'm like, immersed in that weird achy missing feeling that I get, mingled with sadness and stories about it all. BUT...NO PTSD anywhere in sight. I am simply present to the missing, grieving maybe, in a way I was not able to do before, because the grief just knocked me over and triggered all that under the surface stuff. But I don't get that anymore. This grief is just plain grief. So maybe now I'll really be able to process it, and let it go, or get over it, whatever that is and whatever that means.

And so I have been indulging it, all day, in my pajamas, and just drinking coffee and helping Lance organize his stuff. And crying on and off and listening to this song over and over a hundred times. its THE perfect breaking free song and i always knew that he wrote it about me...

Well she was an American girl
Raised on promises
She couldn't help thinkin' that there
Was a little more to life
Somewhere else
After all it was a great big world
With lots of places to run to
Yeah, and if she had to die
Tryin' she had one little promise
She was gonna keep

It was kind of cold that night
She stood alone on her balcony
She could hear the cars roll by
Out on 441
Like waves crashin' on the beach
(And for one desperate moment there
He crept back in her memory
God it's so painful
Something that's so close
And still so far out of reach...)

Oh yeah, all right
Take it easy baby
Make it last all night
She was an American girl

it just puts it right out there, doesn't it? So close, so far. But what is there to ever do?? Rock on, keep moving forward, and let it go, again and again and again. Keep believing there is a purpose to all the fucking madness and that something incredible and alive and glorious is just around the corner. And follow those instincts wherever they may lead. Reach for the highest possible thoughts. Be brazen. And keep breathing, and keep loving, even if we have to die trying. its a risk worth taking. That's all there is to do, in this great big world.

Never ever ever give up. Not on your child, not on you. And never ever ever stop loving.

Friday, July 25, 2014

Normal Kid Problems

A couple of years ago I posted that if only my kid would be better, would get over PANDAS, I would never again complain about anything. Ha. What a short memory I have.

Because there I was stressing over my kid and some decisions he is making about things. Worrying and stressing and not knowing how to deal with my feelings about it.

And then I remembered. Oh, he doesn't have PANDAS anymore.

This is a normal healthy child problem! How lucky am I? How incredible and even unpredictable, and absolutely fortunate am I to have a kid who is healthy, going to college with a full scholarship and able to make any decisions - good bad or otherwise- about whatever is related to that??

SO FREAKING LUCKY.

Every day I hear and see people that would give anything - and have given everything already - IF ONLY their child could have a normal life.

Well, it shut me up, at least for the time being.

Am I still worried? YES YES YES

Am I stressed and complaining about it? Not so much. I'm not even resisting it as much, I'm engaging on a better more accepting level, regardless of the outcome.

Because my child is well. He is going to college as a healthy normal kid making possibly bad decisions but at least he gets to make them.

We are lucky. And I have to trust that life will somehow continue to take care of him. And me.

Of us.

oh gosh there is that faith thing again. I am rebuilding faith, am I not?

I pray that YOU and YOUR CHILD will be this lucky, that you get to stress over where he or she will live and with whom, when they go off to college or wherever they want to be going. Normal child problems, bring'em on.

Sunday, July 20, 2014

Life is Simply Forward and Back

Two steps forward, or maybe 10, or 100, who knows.

Then, inevitably, one or 5 or 50 steps back.

That's just how life happens, thats just how healing happens.

Actually, I think that healing happens in unpredictable leaps and bounds, and then the steps back are simply that the rest of us has to catch up with the part of us that has had healing. And once we are back to congruence, it is at a higher and more authentic level of resonance, and that we can't help but keep moving forward as healing and evolving beings.

I remember when I was in nursing school, learning about child development, about how babies learn. They learn best when their mom is there as a touchpoint, then they go off and explore a new part of the room, or a new person, or a new toy, and then they run back to the safety of mom's arms, to touch base and integrate whatever they experienced "out there" back into their real world, which is Mom. Then once they land and all is right again, back out they go, into the great beyond, then back in to mom, again and again and again, until one day, that touchpoint, our safe place, our conscience, instead of being mom, ends up deep inside of us. That's how we develop, supposedly. Does that ever really happen? Maybe that's ideal, but maybe, that's our evolution.

We all have a touchpoint. Maybe it IS our moms, our spouses, our friends. A strong ethical sense, a goal. A context. For me, that touchpoint is faith. Belief that life is good, that God is good, that love is glue that holds the world together. That faith became polluted, displaced, by intense prolonged pain during my PANDAS journey. So then for years, my touchpoint was simply hell. That was the essence of the PTSD that overcame me. But now, through intention, and alot of work, I am healing this, I am restoring my center with goodness and love and faith, and strength.

What is it for you? What is your touchpoint?

For many people I see in my practice, that touchpoint is food, food makes everything else ok. For some people it may be nicotine, or sugar, or alcohol. Or shopping. Or anxiety. Anxiety sucks, but at least its familiar, its a touchpoint and can at least remind me of where I am in space. For some people that touchpoint may TV, or exercise, or maybe the ocean. Or other people.

I do wonder about this. Is this why we need other people? And how much of that need is ok, and how much should simply not be there, in that we should never need anybody? Humans are, after all, herd animals. Isn't attachment expected, survival-based and instinctive? But then we are made wrong for needing people. I do not understand this at all.

If you know the answer to that, I'm interested. Because I'm sincerely confused about this right now. My relationships with other people became very damaged during our PANDAS journey. There is barely anyone that was not disappointing to say the least, at that time. My experience was that we were left alone in PANDAS hell to sink or swim.

So now, oh this is so interesting. So, as I look back on this blog, this question I have about the destruction happened to us through PANDAS - how it could have happened, who let it happen - now that I am working so hard to recover a sense of faith, I cannot simply say that God made it happen, or let it happen. That can't be the answer. So my mind is trying to find the answer somewhere else, IF there even is an answer. So now a part of me just simply wants to blame the people, the people in our life that let us down. That left or ignored or simply did nothing to help us. I do resent alot of people, but its confusing because on the one hand, I feel like I should have never needed them and so its my own fault, and on the other hand, we are herd animals by design and have to need other people. And we were drowning, alone, and very few people threw us out a line. How to make sense of this dilemma?

How much to open up to, rely upon, include and care about others as necessary part of my personal human experience again? I am so burned in this department. How to Forgive the people I still hold as internally accountable for our abandonment? The "F" word again!!

I have alot to say about this, this fundamental thinking about myself in relationship with the people in my life. But I'm going to just wait, and consider it, and see what if any wisdom will come to me in this regard, about holding other accountable for what they did.

And meanwhile, probably even more important, I see growing evidence that I am feeling more confident. I have been allowing myself to go out more, to say yes to more invitations. To be less committed to my small personal life. And while I have overall really shut down my heart to people, for the most part - since my grudge makes it too hard to trust anyone right now - every now and then, I steal glimpes of myself as a relaxed, happy, inquisitive and fun social being. Not just a discarded leftover from a PANDAS life. And I recognize that while PANDAS damaged much of the structure of my life, and even my most primal connection to life, I'm ok, I'm in here. And while i do feel like I missed out on so many good things and good feelings over this last almost decade, and while I became traumatized, the fundamental person that I am is so intact. I cannot tell you the relief this has been for me to be discovering. Like, finding a long lost friend. A part of me is beyond PANDAS, maybe always has been, or at the least, is coming back.

How long till I stop punishing myself completely for what PANDAS did to me, and to my child, and for what I did and became as a result? I don't know. But every day I am making leaps and bounds foward, then back, then forward.

And finally - the one constant here is that my son is healthy and well, and this one thing is allowing me the freedom to explore my own self and life.

If you are on a PANDAS journey - your time will come. It may look somewhat like mine, laden with PTSD and therapy and incredible pain and loss, and then, healing. Or maybe it will be easier. I hope it is. I hope this writing helps you to know, that your child CAN HEAL, and you, your own self can heal as well back into your life.

Thursday, July 17, 2014

OUCH A MILLION TIMES OUCH

oh this terrible awful missing feeling, arrgggghh its killing me today.

it started last night or maybe yesterday afternoon. what exactly am i thinking i am missing? I'm not 100% sure but it has something to do with yearning for my pre-PANDAS life experience - a normal happy life with normal ups and downs and loving relationships. but, why would this come on so strong?? this incredible yearning moment? nothing has changed, between yesterday - when i didn't feel this way - and today, or last night, when i started to. nothing is wrong, but i'm in this moment when my inner alarm bells are ringing and it feels like something is wrong. i am now calling this a PTSD moment, because it has nothing to do with my current reality, it just feels like it does.

this is what i do when it happens. i check my email a million times. i pace. i don't go to the gym. i stay in the house. I watch tv. i talk to myself and try to pull myself out of it. i try to figure it out. i obsess. i worry. maybe get myself on Facebook because i know there is always somewhere on those pages that will understand and help me feel less isolated. And now i will cry, i will cry in the car on the way to work, and hopefully that will help, because once it gets to the level of cry, maybe there is hope for me. then once i'm at work, i'll think about a bunch of other great things and hopefully distract myself from it and it will go back into the background for another day, or another week. and in it, in this moment, i get to choose that i'm ok, that this feeling is a feeling that will pass, and whatever and whomever i believe i am missing is a void that I MUST FILL with my own self, my own inner being, my own source energy, my own life. I have to come back all the way.

Is this faith?

OUCH.

Saturday, July 12, 2014

GUTS AND GLORY - The Meaning of Suffering

Does anybody get this? Why are we handed a suffering life?

Religions and philosophers and humanity have been trying to make sense of suffering since the beginning. Why does it happen? Why does it happen to others, terrible suffering, all around the world - way worse suffering than I ever had to endure - and why did it happen to me? And to my son? He is angry, I see that. He's an amazing resilient and brilliant young man with an incredible future ahead of him. But I can also see, he is angry at the world, he does not find the world a loving, trustful place. He is angry at me for letting it ever happen the way it did, not just the PANDAS part, but the other string of losses incurred as a result of the PANDAS part, and then my stress and fatigue as a result of that. I get it, and that's ours to work out, and ours to forgive, but gosh it brings me to the end of my understanding.

I'm trying to make sense of suffering, and how God lets it happen, and how to keep moving emotionally forward from here. Why did my son need to inherit this burden that he must now work out? And I am determined to continue on my healing journey and to ultimately restore myself so completely post-PANDAS that it simply no longer defines me, at least not in a negative way. That is no longer claims any piece of my life or my son's life.

I have come such a long way, in the 4 years since we started this blog, but mostly in just the past month, since I started writing about my PTSD recovery (see I Am Coming Out, Part I, June 13.) I can't believe that was just one month ago exactly since that post. I have moved internal light years, Thank you God! And just a single week, since it occurred to me on the 4th of July that I was in a stare-down moment with the universe, and that I either go back into hell or choose to move forward into a place of faith, back into a world that is love-based. And I made that choice, right here on these pages, as it occurred to me as a possiblity. If you have read this blog, then you understand that the destruction of my faith has been the hallmark damage that happened to me from our PANDAS journey and that my greatest challenge is wrestling my faith back, for without it I am just an empty human shell.

That one moment of choosing faith has been the most restorative thing that has happened to my brain and my heart and my soul in a very long time. Huge strings of great feelings and inspired thoughts returned freely to me. And I had the best week, of feeling hopeful and non-attached and very present and happy and tuned into the right radio-frequency of the universe, that I can remember happening in a long time.

But, you know, I get to a point where, to keep moving forward, I have to keep choosing faith. At every intersection, at every moment where I see myself feeling hurt, or let-down, or uncertain. Or I see how someone that was a great friend, no longer trusts me because of the PTSD crash I had, and that hurts me so bad. And I have to let it go. I have to go so deeply in myself and say OK, young lady, who are you and what do you want your life to be about? you are reconstructing yourself right now, in this here moment. What you are you really made of? Guts and glory? or fear and victimhood?

Can I change what people think of me? Doubtful. Can I simply shift, can I simply just say ok, I don't understand any of this, but I choose faith, right here, a leap in faith based on nothing? Do I have the right and the power to call that forward??

Does anyone have any answer to these questions? Are we as conscious beings not faced with them every day?

If I choose faith, how far can I go without forgiving God for what happened to us? Without forgiving myself for not being more perfect in our PANDAS-stricken life that I could deal with everything better plus still be there fully for my son, who despite everything I did to handle it, I still managed to let down because at times the stress of the burden hurt him, as he saw my stress. I did everything I could to contain it, but sometimes it was beyond my capacity. He was sick for years, 7 years. SEVEN. During which I was divorced, bankrupt, physically and emotionally depleted, and most certainly, never really made friends here where we moved to in the middle of everything. Sometimes I went to work on 2 or 3 hours of sleep for days in a row, and I simply could not function well, and then those would inevitably be the nights that my son would flare and go into these horrific mental states just as I was falling into bed at some already ridiculously late hour, and I just couldn't help him in those moments I was just completely emptied out. Sometimes I would just, scream into a pillow, or even break something, but moreso, abandon him. And he remembers those nights, and so do I, where he was so out there, and I was so absent, I could not get up, or I was frantically trying to reach someone on the phone to come and help us, at maybe 12 or 1 in the morning on a Tuesday night and no one would ever answer their phone, including his dad although I begged his dad to leave his phone on at night, but why should he ever bother? And so Lance was maybe in the living room losing it and I was in my bedroom, maybe even with the door closed, losing it in myself because I couldn't handle just one more instant of this hell and exhaustion and extreme aloneness and lack of God and humanity and no shred of grace in sight anywhere. And eventually I would collect myself and get up and go into wherever Lance was and try to help him.

If you are a PANDAS parent, you know exactly what I am saying here. You are not judging me at all, you are likely judging yourself for the same thing different day.

These most awful of the awful nights - which although they are few, feels like millions - contain the essence of the PTSD experience I have had and am working my way out of. The shame of them, the total isolation and abandonment in which they occurred, the hopeless lostness of them - have been the focus of the trauma work I've been doing. They are freaky bizarre places to go in consciousness. The power of those moments and others like it over the years eroded a huge hole in the place where my faith lived and filled it with poison.

Now, I am trying to let this go. And I know that the way I can do that is to refill my soul with faith. This is a very conscious act.

So I am back to this same f-ing place, only, deeper in. I guess like concentric circles, bringing me deeper and deeper into my soul place. I bounce off the same edges - forgiveness. Understanding. Faith. Arrggghhhhh.

Can I understand what happened? Yesterday I read the Book Of Job and all the commentaries I could find online to see if it would help me understand. But what did Job ultimately understand about his situation? That it was not humanly understandable. That God does not owe humanity anything, and that the mystery is so beyond our comprehension anyway its a moot point. You either choose faith or not.

Having spent a number of years practicing Tibetan Buddhism in my 20s and 30s, I know something of the Buddhist views on suffering - it is the inevitable result of our human mental state of being attached to certain circumstances and outcomes, and that life is suffering unless we cultivate pure nonattachment. Well, all those years of chanting and practicing nonattachment did not ultimately stop me from the suffering involved with our PANDAS life. How can a mother be non-attached to her child's suffering or beyond reaction to that level of exhaustion? That is why in many religions, men are the chosen clergy. They do not contain the same fecund attachment to this earth that women do just by the nature of birth and our lunar bleeding cycles. We are bound.

So now what?

Its Guts and Glory, or bust.

Unforgivable. Non-understandable. vs. Choosing faith as a conscious act. Every day, over and over, at every fork in the road. Until it permeates my soul and forces out the poison that crept in and took over. Maybe it will take a million choices for this to happen. Maybe its just one huge sweeping motion. I don't know. Unforgivable. Non-understandable. Terrible awful. But somehow, I have to make it ok and move on. I have to. Forgiveness for its own sake, for my sake. Grace.

This feels beyond me. It feels like I need more energy than I muster as a single human being, this choice to forgive the unforgiveable and choose faith anyway. I feel like, planetary level energy. I need a proclaimed Universal Forgive PANDAS Parents Day, or moment. Maybe we can all choose a window, a minute, where we can light a candle and focus and say a collective prayer for the Grace of PANDAS parents. And ride this strong energy wave as deep and as far as it will take us. This is not a bad idea.

I am leaving this computer, and going to go to an old power spot I have not been to in a long time. Mount Tam, a certain place... I need to go there and think and pray on this right now. I really need some help right now and nature is the only place I can think of to find it...

I will bring all of you with me, in great love and respect.

P.S. It was good. Choosing faith - its not beyond me. Its Guts and Glory or Bust.

Friday, July 4, 2014

Your Faith Will Find You

When I go back and read a post like the one I wrote this morning (Deconstructing Homesick Loneliness), I want to take it off this blog. I can't believe those spaces and I embarrass myself reading it. Even the name of that post is just awful, you know I had to be in a terrible space just to write it.

But I'm not going to take it off, because that was real, even if it was fleeting, and now, this is real. PTSD is exactly like that. You're just regular, and then, you're in this intense altered space and it can be confusing. But I can see it now, it is losing its grip on me. (Here is a definite sign you are in your head or PTSD - all you can think about is the story, telling it, explaining it and justifying it). And I hope that in some way it helps even one person to know, that you are not the only person feeling so small and beat up at times that you can't even get out of your house.

Today, I used every bit of strength and discipline I had and forced myself back into the present moment. That is the only place there is ever peace and love, happiness and a life of joy and meaning. I am unwilling to remain a casualty of PANDAS, or to settle for less than, at the minimum, the emotional life I had before PANDAS ever happened.

It is taking some time but I am working my way out of the story, out of the trauma and into a present and future that is reliable, loving, abundant and free. And just, normal. One day I will stop telling the story of how PANDAS ever happened to me, it will no longer define me, at all.

This is my stand and this is my intention and if this a moment that I can call faith back to me, then I am willing to say that somewhere in me is still enough faith that I can honestly and truly turn this ship around.

I PRAY THIS SO HARD. I Pray that my faith will find me again, right here where I am, and bring me the strength and clarity to restore my heart and soul.

And I pray this for all of us, for anyone caught in a story of suffering, for any reason.

I pray that faith will find you, right where you are, when you need it most, and will carry you across the bridge, no matter how broken it may be, back into a place of peace and healing.

Deconstructing Homesick Loneliness

ARGGGHHHH I HATE THIS FEELING. Lonely homesick angst. I HATE IT.

This is what it looks like to battle PTSD. I'm not emotionally unwell, I'm not depressed, I'm not neurotic. But I am battling being overcome by these incredible emotions that cloud my thinking and try to make me believe that things are not OK today, when they are fine, but I can't find enough presence of mind to experience the OK-ness that today is. And its sad, and hard, and lonely, for no reason, and I hate it.

Last night it came on, it kind of ran me over. I feel it mostly in my throat and chest, its heavy and it hurts. Its a missing and a longing, an aching. I think its a piece of the PTSD that got triggered. In fact, I know that is true, because of the overpowering feeling nature of it. This feeling of being disconnected from the human race that makes no sense. And I hate it.

I was doing ok, so what happened? Well, coming back from Mexico to this strange isolated life, is one thing. I felt more at home in Mexico during our brief stay there, than I ever felt here in the entire 8 years we've lived here, or more accurately, haunted here. The warmth, the water, the sun, the relaxed nature not of the vacation but of the people, I can't explain that. I miss our life in Atlanta, where even though everyone had alot going on, there was more warmth and connection between families, and we were integrated into our friendships. I never felt integrated into this place outside of my work. I have always felt foreign, even before we moved here, which I never wanted to do in the first place, I did for my husband's business which is an entirely different story. I knew this was simply not my place. I never felt a chemistry with this area, a love for the land itself. Its cold, the water is cold, and the land is nice but its not my land. And I am a very visceral person when it comes to my home.

But I also cannot deny that the major part of my disconnect with this place is due to the fact that Lance was just starting to get sick when we moved here. His tics began on July 7, 2006, the day the moving van was loading our stuff. In the 10 days it took for me and him to drive here, from that day, Lance's tics, OCD and anxiety were in full swing. Memories of me driving like a maniac through the desert while he laid in the back seat with a jacket or something over his head because all of a sudden he had to count everything he saw - the light posts, the white lines and dashes on road, it was nuts. By the time we got here, we were a mess of anxiety. So no one here ever knew me as me, or him as him, or us as a family. And all this place does now is elicit feelings and memories of losses and loneliness and bad juju. Its no one's fault, but I still feel very resentful. I have to let that go.

So today is this 4th of July holiday and even though I'm busy with great plans all day, I'm feeling so disconnected and isolated. This makes no sense. I'm certain that today is simply triggering the memories and bad feelings of many years of holidays here in Sebastopol of being alone. And all the other bad isolation memories here. Holiday blues to the max. Holidays of any kind are such a sore spot for me now. I am a social person, and my pre-PANDAS life, I was essentially, alone when I wanted to be, and very involved in friendships and community when I wanted to be. Here, its always been just Lance and me, me and Lance. Thanksgivings, Christmases, 4ths of July's, Memorial Days, any time and all of the time. Not exactly the people invited to barbecues. Not because people don't care, or didn't care, but we were caught up in PANDAS land for a long time, and it was stressful for people. It was never like, hey let's invite Amy and Lance over and have some fun! Plus we were stuck here, because of overall lack of funds. And while we're not stuck here anymore, exactly, and while Lance is leaving for school in just a few weeks, and I am going to be moving more forward in my own life whatever that means - it still feels like this today. And its so freaking heavy.

I HATE THIS FEELING.

In the meantime, I have to pull it up, right now, and get myself out of the house. This house has more gravity than anywhere else on earth. I weigh 10 times more in this house, the pull is strong. Sometimes its hard to leave it for any reason except to go to work or the store. On days like this, the gravity is like, a million G's, and it can take tremendous fortitude to just take a walk or do anything or go anywhere ever. Its so so heavy, this house, right now. It's its own planet, and i'm in orbit around it, and that's it.

UGGGGHHHH.

This is what battling PTSD looks like, overcoming the gravity of these past feelings and emotions with the most intense intention I can muster and try to focus on the simple here and now.

OK so I am going to do 2 things right now. One is, try to remember and think about some good future things. Moving on from here, going to the desert this fall, the fact my darling son is healthy and going off to the school of his dreams, the fact I have a wonderful practice and I love what I do there, and I know even if I can't feel it right now, that my future is bright and hopeful. And i'm travelling to the east coast this fall to see family and friends as well as for professional travel. Secondly, i'm going to reach out to a friend or two, right now, and just get out of this funk because I know there is no way that I am as alone as I feel right now. And three, I'm going to get off of the computer, which is I think the center of gravity of the house, and just push myself out there. Outside. If i can just break free of this house to get outside, it will help my thinking so much. So that's what I'm going to try right now. And 4th, I'm going to get ready to go to a great party this afternoon, and to the fireworks tonight, and move the heck on in life.

Monday, June 30, 2014

Peace and Strength for All PANDAS Parents and their Children

I appreciate that a number of people from all over the world are reading this blog.

Most of you arrive having googled something about PANDAS, and I don't know why this blog shows up for you, but more than anything - aside from the obvious fact that I am hoping your child heals completely from this illness - I wish you a journey that includes love from people in your life, and love from yourself, for yourself.

This is so hard, PANDAS. What happens to your child, your family and yourself, its hard. None of us are prepared, its impossible to prepare for war. You think that everything you have ever done may make you strong and ready. But you're still only a human being, and its hard to fight this battle.

We end up fighting everything and everyone. Fighting the illness would be hard enough. But no, that's not all, is it? You have to fight your pediatrician just to acknowlege the fact that your child is, in fact, not having a psychiatric breakdown, your child is having a physical and likely curable illness caused by an infection, if they would just give you the treatment.

Then you have to fight with your insurance company to pay the bills.

Then you likely end up fighting with your spouse, or maybe your mom, or your friends, who think that you have absolutely lost your mind to be trying to get treatment - and heaven forbid, antibiotics - for your child. Antibiotics have become demonized but psych meds, oh, psych meds are fine, just throw your child on some psych meds and call it a day.

Chances are at some point you will have to battle with your child's school, to either justify how much they are missing, or to try to get them to understand that your child's behavior, or urinary frequency, endless handwashing or difficulty separating enough from you to even be at school, are due to a physical illness.

I don't know, that's crazy. How many battles you end up having to fight. No wonder everyone is just so exhausted and constantly feeling like no matter what you do its not enough. But you have to know, you must know, this is not your fault, its not you.

If you are out there, you are not alone. There are thousands of parents, just like you, trying to cure their children, and kids are getting better every day.

Be sure to go to www.pandasnetwork.org for information to share with your provider and your spouse and your child's school and your family and friends.

There are a number of facebook pages dedicated to PANDAS parent support and information sharing, and also the Latitudes blog for PANDAS parents. Please reach out and if you can't find this information, contact me and I will help you find it.

It is so important to not be alone out there. I am so healing from just too much time alone, dealing with my son's illness. My heart is broken, it just is, but I have had some recent moments of feeling very whole and very peaceful. And of remembering other times I felt that way, and enjoying those memories and connecting to them.

My life became, like, a blip. Surreal. An isolated, warped kind of existance that did not share hardly anything with the rest of the world. So weird. But now I'm coming back, and for this I'm so grateful.

Don't let this happen to you. Don't suffer more than you have to, simply because you can. Reach out to someone, today, and stay real in the world. Don't slip into nothing.

For me, in addition to holding the intention that my son's wellbeing is solid, and his future stays bright and real, I also hope and pray for my own. For my well being, and that my future opens up as bright and real. That I land solid, back into wholeness, my own peaceful place, and that my path forward is obvious and joyful and full of all the love and joy that I missed out on, all those years of suffering alone, as my child fell apart and our life disintegrated.

I am also holding an intention of well being for YOU. Keep your future bright and real. Pray for Peace, within yourself, and stay real, for yourself and for your family. Keep reaching out. Be strong and pull up your courage every day. Find inspiration wherever you can and share it and bring yourself back every day. Have someone, anyone, tell you that you are beautiful every day. Tell yourself. Its not you, its not your fault. You are amazing and brilliant. You are keeping your child alive, and your child is going to get better, because of you. You can do this.

What intention are you holding for today? I already know what you are wanting for your child...Do Not Give Up, and Do Not Settle For Bad Care. Stay true to your instincts about what your child needs and find the medical care they need, even if you have to travel, its worth it.

What are you holding as a possibility for yourself today?

One day, the world will be a better place for PANDAS children. That world is coming, but we are a long way off. In the meantime, we have to do battle. Roll up your sleeves and sharpen your weapons. But you do not have to do this battle alone.

Tuesday, June 24, 2014

Taking It On The Road

Tomorrow, I am going to Mexico, on a vacation.

This is the first vacation on nearly 8 years. This is so amazing.

Lance and I and friends are going to Mexico for no other reason than to play.

I can't wait to see how this helps me change my thinking. I expect happy feelings, appreciation of beauty, clarity, and relaxation. Who knows what else will show up? Perhaps a change of heart...

Sunday, June 22, 2014

Damage Control

Here's a sad thing.

Its hard to go back and clean up messes that you made when you were a mess.

There's no way to justify it, and there's only so many times you can retell a story, or what you were doing or thinking when your brain was messed up.

So to all humans in my life, I am sending a blanket apology for that I really got lost for a few weeks or maybe even a few years, and I really lost my perspective on some things.

It was actually not my fault. I had an incredible fall with PTSD. I'm recovering from this. This was inevitable and I'm ok.

I am really sorry for whatever it cost anyone in terms of happiness or peace or trust.

Bad years plus PTSD = Bad brain, bad perspective, bad days and bad weeks.

I discovered that at the absolute core of the PTSD is a powerful experience of abandonment. I really got that today. That feeling was at the heart of my life as a mother with a child with PANDAS, and as a woman, the way it came down for me, was this experience of being completely abandoned by anything and anyone in life that was ever good. I never let that stop me. But then as soon as I had a current situation that even remotely felt like that, it was part of the what triggered those incredible panic attacks that I had. This almost crippling feeling of being abandoned and alone, but the intensity was so cranked up it was not normal. It was terrifying and lacked any perspective or power to do anything constructive about it. I never went through anything like that before, and of course everyone ended up being hurt. And i feel pretty bad about that. One thing I do not believe that I do very often, is hurt people. Its hard to forgive myself for this incredible breech of trust, someone's heart, that I hurt by my process. But it is yet another thing I must add to the list of things I need to let go of. Fortunately, this person is a true friend and we walked all the way through it, and for that I'm super grateful.

If this happens to you, this is what PTSD looks like. It bleeds the past trauma so into your present that you can't tell the difference and its super intense. You get it all over people. If you are losing your perspective like this, its ok and its not your fault, but you probably need some help, and that's ok, too. It's good, actually, because its a sign that you are moving forward, out of your trauma and back into your life.

So I am apologizing to anyone out there, to whom I owe any apology over the last eight years for any reason related to that I was sucked up into a sucky and unhealthy PANDAS life.

If I let you down, I'm sorry.
If I didn't trust you and I should have trusted you, I'm sorry.
If I disappeared and didn't tell you why, or if I didn't let you help me, or judged you for not being enough or helping me enough or understanding me enough or fixing PANDAS enough, I'm really sorry.
If I needed you but didn't tell you, I'm sorry. And especially if then I was angry because you weren't there, I'm very sorry.
If I was too caught up in myself and wasn't a good friend to you anymore, I'm sorry.
If I showed up as someone so self absorbed and believing that my problems were bigger or more important than yours, I'm really sorry.
If there is anything else I may have done on a human front that hurt, disregarded or disappointed you, i'm sorry and i'm certain I did not mean it. I was simply overwhelmed. I would do anything to make it up.
I am more than what you see out here.
Thank you for listening.

Friday, June 20, 2014

Score One For The Team

Today was the third and final day of Vanessa's first IVIg treatment. I can't stop thinking about her.

Vanessa spoke at the West Coast PANS/PANDAS Parent Symposium in April of this year. Her story is one of grace and humility, tragedy and victory.

Vanessa developed PANDAS when she was 11 years old. Severe OCD as well as other physical symptoms and cognitive issues. She tried to hide it from her parents because the OCD told her that if she told them, they would die. So she didn't tell them, for years. Instead she mostly suffered in silence, struggling her way through school and work and life and friendships.

It wasn't until she was 28 years old, living in NYC working on an internship or school, I can't exactly remember, when she heard about a study at the OCD clinic at Columbia University Hospital. During the screening, they discovered that they thought she may have PANDAS. When her work was done in NY, she came back to the Bay Area and followed up at UCSF neurology, where they diagnosed her with PANDAS and autoimmune encephalitis.

After 3 days of intravenous solumedrol, Vanessa told me that her mind was silent for the first time in 18 years. She could barely recognize the quiet personal space that was her own self. Can you imagine what this would be like?? I doubt we really can. This was early 2013.

Since this time, Vanessa has had alot of treatment, alot of antibiotics, and alot alot of steroids. They help but not for long, of course, the inflammatory autoimmune process is so engaged, and the effects wear off faster and faster. The side effects of long term high dose steroid use are very bad for you, and very uncomfortable.

So after months of being turned down for IVIg by her insurance through the state of California Health Plan, her treatment was finally approved. One treatment. UCSF is pushing for six. There is no certainty that her insurance will cover any more.

How did Vanessa get her insurance to cover the IVIg? She never took no for an answer. She continued to escalate her request, and got all the way to a lawsuit. She devised and filed a formal petition with the required number of signatures to push her insurance to cover IVIg for PANS/PANDAS and AutoImmune Encephalitis as a rule. She backed off of having the hearing that was supposed to be on June 2, when just a couple of days before, her insurance said they would cover it. Well, of course they wanted to avoid a judgement! So they caved before that could happen and said they would cover her treatement.

Today she told me that her insurance has called her a number of times asking her to please call off the lawsuit. Vanessa was conflicted, because of her generous spirit. She wants to continue to push for parity of IVIg coverage for everyone. But I'm afraid that if she keeps on pushing them, they could totally deny her future treatments.

Another dilemma. Do you do what might the best thing for everyone and possibly risk yor own best interest?

I suggested to Vanessa that she not continue with the lawsuit, at least not for now, until she has gotten what she personally needs. Vanessa deserves to be well, and simply cannot risk losing the coverage.

Hopefully, stories like Vanessa will soon be a thing of the past for PANDAS/PANS children. And meanwhile, she is a warrior and an extraordinary being and one of the biggest people and most humble human beings I have ever met.

I love you, Vanessa. I am so happy for you, that you are having your treatment, and so proud of the simple quiet courage that you portray day in and day out, and your willingness to find hope after all those years of illness, and pursue it.

You are an example of one of the best people on this planet and I am blessed to know you, and to have the chance to watch you come back.

Tuesday, June 17, 2014

Letting The Chips Fall

"Rock bottom became a solid foundation upon which I rebuilt my life." ― J.K. Rowling

One thing I notice about gratitude. It just rises to the top. While faith is a choice that i wrestle with, gratitude just naturally shows up. It floats right up to the top of awareness like a breath of fresh air, and puts everything in place.

Right now I am feeling incredibly grateful - for myself, and for my brain's recovery.

I feel like I have gone through the eye of the storm, or the eye of the needle, of my PTSD. The panic attacks have really subsided, and every day I feel like my mental health is being restored to me. I cannot express the gratitude I have for my own self right now, my own thoughts.

I remember now. I used to love myself. I remember I used to completely trust my feelings and my thoughts. I remember I loved to spend time with myself doing things in the world. I remember the world was safe and loving as a context for my life. I remember now.

PANDAS stole my peace of mind and I was afraid I might never come back. But I am remembering now.

I am finding myself incredibly clear. Its familiar. Its intense, though. Its more laser-like than, say, a sitting back spacious kind of clarity. But not intense in a bad way. Maybe the intensity simply matches the degree I need that clarity right now to put my life back in order. I need the strength it will bring me to do the next round of hard work. I need it to take stock, tell the truth about my life and maybe some people in my life, and let the chips fall where they may.

A few weeks ago, while I was deep inside my PTSD, I took stock of my life, what shreds are left from my PANDAS journey, and what I found terrified me. Bankrupt, no credit, no savings left, no homes left, no marriage, living in this far away land, in exile, facing starting over from from scratch at 58 years old. This scared the living crap out of me and was actually a part of the panic. (Just so you know, I recommend NOT doing that when you are in the middle of a mental health breakdown. The last thing you need are more reasons to be terrified). A breakdown which, by the way, was absolutely inevitable and necessary. I was already broken down but I was fighting it. I had to go all the way down, to the rockest bottom. I had to completely dissemble any shred of belief I may have left that I had any control over anything. I had to fall to the place beyond which I could not fall any further. God, I hope I can't fall further. The only other place to go would be total nervous breakdown, which I can only imagine, includes meds and a hospital stay. Or death. If I didn't go there this time, I never will.

I can't pretend that I can control anything. I can't pretend I can fix my circumstances very easily and I can't pretend I can't fix them. I've always been enough before and I can only guess I will continue to be so. I certainly cannot control people. I cannot control which people stay in my life and which don't. This is the most painful of all. In fact, one thing PANDAS has taught me is that I can't really control anything. For awhile, I didn't even have control of my mental health. That was the scariest thing of all. Not only for me, but I'm sure for people around me.

So today, I remember. Today I am clear. Today I feel gratitude. Today I feel right relationship within myself, a lining up of parts that feels familiar. And today will be a good day. Today I will tell the truth. Well, I always try to tell the truth, but today, I will trust that the truth that I tell is reliable. And for that, I couldn't be more grateful.

Sunday, June 15, 2014

I Am Coming Out (part 3): Back From the Edge...

"THE EDGE, there is no honest way to explain it because the only people who really know where it is are the ones who have gone over. ― Hunter S. Thompson"

One thing I can say is, its not just that PANDAS came into my world. Its that every single thing that was good, left it. Everything. I will not recount what is already on these blog pages, the list is too long and I am unwilling to be victimized by it any more. But I can say this. My world got way too small for way too long. I could handle it all, but handling it alone, in exile, for so long, please. I know plenty of families and moms that while they are tortured by this illness, they have the added resilience that comes from husbands and families, friends, homes and the rest of life that we lost in the nearly 4 years it took to diagnose my son and the nearly 4 years it then took to get him better. Many others, like me, are left with nothing but a little teeny world that fits on a pinhead. So if regrowing my personal life is paramount to any early or enduring success of my healing... where to begin? Regaining perspective from within, that is my goal. Or creating one from scratch if that is necessary.

But can someone ever really come back from over the edge? Is it possible to find the bridge back to happiness? To restore my faith? I don't know. I do not know that I’ll ever believe in the world or a God or a person the same way. I may never regain that pure sustained connection to a high vibration of love and truth and goodness as it resonates in the universe that I believed was the essence of creation. That part of me might be broken. Or maybe, I was wrong. Maybe it was a hallucination after all. I will have to find this out.

I don’t know if I will ever feel back in sync with the rest of the world. But you know, when I really think about that, in many ways I never was anyway. I always followed my own rhythm, and lived and loved in my own way and in my own time. But the difference is, it never bothered me before. When people were flocking home from the beach because it was so freaking windy, I was just suiting up and rigging my windsurf board. As an adult, I never felt like an outsider to life; if anything, in my own quirky way I felt like I was always one or two or ten steps ahead of the crowd, or lifetimes ahead, and I didn’t really care. That is the breech. That I even give a shit.

Can the rift in my soul be repaired? I don’t know. I see other broken people and I know in my heart that they can heal. I know some people who believe they are so damaged but when I see them, I see a soul that is still pure and people that are suffering but still whole, and still worth loving. In this moment while I can’t see that about myself exactly, seeing it in others may be the first step, and I will hope for that.

So, here I stand, scratching my head. How to repair what may be irreparable.

Ultimately, all the understanding and therapy and EMDR trauma sessions and all the explaining in the world cannot fix anything, although insights are valuable and can be healing. They can help you change your mind about things.

Ultimately, I am faced with only one possibility that I know of, an inner shift that can only come from me. A leap of faith. A choice based on nothing but a feeling, an instinct. This has always been my strength, the power to choose a leap in faith. Faith is not a given. There is no already “is” faith, like a thing that you have or don’t have. Faith is a creation, a choice. I called it in, I built it, I chose it, over time, over years, from nothing but a dream, as a little girl. I remember doing that, I remember the moment it occurred to me, that I realized that faith is an option and I prayed that faith would find me, that it would stop me from being so scared. And it did, it has been my best friend all my life. Now I keep reminding myself I can create it again. Choose, Amy, just do it. But I don’t know. That bridge just feels too broken. I would have to forgive the entire fucking world, and I just can’t, not yet. No bridge can bear the weight of that.

So for now, I’m here, on this side, stuck. But at least I can see it for what it is. At some point, because I am me, I will likely find a way to call forth the courage and the will for such radical forgiveness, because the other option is simply so unappealing. Life on the wrong side of the bridge= Bad. But I don’t own that level of courage right now. I don’t know if it is even accomplishable as a purely solitary effort or may require an entire group effort, or planetary effort, or maybe a lot of drugs. Ultimately I have to find out if the road back over that bridge is still even in me, at all, or if I ultimately care enough to even be that generous as to dole out such massive amounts of forgiveness, because I’m not sure that anyone really deserves it at the moment.

Grace is a beautiful thing, it should be deserved but also, I know that the essence of grace through forgiveness is that it must be freely bestowed and for my own sole benefit, my own freedom. No one knows or cares or is burdened by my broken heart, but myself. Well, my child sees me pull it up every day, and for his benefit alone, I should push myself through this next step. But it still feels like I’d be doing the planet a favor, redemption for its own sake and all that does right now is call up resentment. How dare you for steal my life and then make it my job to somehow wrangle it back? Forgiveness for that feels miles away, light years away.

Hmmmm, so thus the dilemma continues for the moment. How to come back from over the edge?

Saturday, June 14, 2014

I Am Coming Out (Part 2): PTSD Sucks

"Strength isn’t about how much you can handle before you break, it’s about how much you can handle after you break."

I am sharing this story for 3 reasons:

1. In case it helps you recover which I hope it will

2. In case it helps me recover which I believe it will

3. PTSD sucks but it can be overcome

A bunch of years ago, I remember being in the high desert of Taos, listening to the hum of the land and watching a sunset through these incredible steamy hot springs. I had been out there for like 4 or 5 days, just singing and thinking and praying and stretching and walking and talking to the rocks and rubbing sage on my face or whatever. I imagine there was some moon howling going on at times. So perfectly at home; happy, content. I remember an awareness of connection to the vibration of love flowing through the universe, creating me and all of life, literally constituting me. No I was not using any hallucinogens:) I was high on life. And I remember thinking that if the world ends tomorrow and I am the only human left (like in the Twilight Zone, you know….) I would be ok. That no matter what, I was and we are always connected to the flow of everything and there is nothing to be afraid of, now or ever. Granted, I was not a mom yet, so I did not have that same visceral attachment to the earth. And yes, I was definitely a little out there, but those are the kinds of thoughts you start to have when you’re way the heck out there in the wilderness by yourself for any period of time, or at least that I have. Its why I love the wilderness. These ah ha! universal principle recognition thoughts reveal themselves. Well, Thoreau had them at Walden, and was famous for them. its just what happens. Either you slip into some weird common hallucination or maybe tap into an incredible river of truth. I choose to think the latter, as a reflection of my personal integrity and nature, that life is good, and trustworthy. It is enough for me, and I am enough for life. This constitutes my faith, and this is how I have lived. Simple, internal, nothing to prove, and nothing to fear. No matter what, I have always come back to this, faith in the inherent goodness of life, love as the glue that holds the world together.

Then this thing happened. Over time, PANDAS burned a hole right through my ability to generate faith. And I am not a fickle or weak person. in fact I am one of the strongest, most devoted and loyal humans on the planet. PANDAS ripped a breech in my most fundamental orientation to life, the knowing that no matter what it looks like in the moment, the principle that drives life as we know it is inherently good. That my personal connection to life is enough. That our life force is sustained through a loving universe. And its not only that it didn’t go down that way, its not only how awful the things were that actually happened. It was that the prolonged anguish invaded my psyche and soul, like a virus, and inserted itself right into my DNA, right into that place where my faith used to live. And replicated itself, in secret. Like a virus, like a parasite, like an intracellular infection, like PANDAS of the soul

And that set off the series of panic attacks I experienced over the last couple of months. Just as I was starting to feel better! Just as I was opening my heart back up. Just as I began to relax and trust and land back inside myself, instead of peace, or faith, or space, deep down, in my familiar self - instead of me, I encountered this shocking fount of anguish. and a huge fear thing that came on. Fear that it would simply kill me and a crushing feeling in my chest of the anguish and I couldn’t breathe. wtf! That= panic. I ended up in the ER. I thought maybe I was having a heart attack. WTF!! it was a panic attack, yet...I had nothing to be panicking over! Nothing! Things were GOOD!!

This is PTSD, true PTSD. Post War Syndrome. Just when you should be feeling better, you're feeling worse - sometimes. And inappropriately. And maybe having panic attacks, or pictures and memories of terrible moments that constantly come back and make you feel just as awful as you did when it happened, or worse even. Because now you're totally judging yourself for feeling bad on top of how bad you may be feeling. And people around you think, what is your problem NOW? Aren't you EVER going to be happy? Your kid is well now, all this stuff, he got into a great school, blah blah fucking blah why are you crying now?? Well, what can they possibly know about me? Or anyone who cannot understand yet wants to believe they can judge me and what I have been through, what any of us have been through, and what the aftermath looks like, and whether or not I am a trust worthy lovable human being worth supporting. All they do is add to the trauma, with all their good intentions.

Fortunately, I have an amazing therapist I have seen on and off over the nearly 8 years of Lance's illness, who knows me really well. She knew me from the beginning, and has seen me in alot of different spaces, and has assured me, probably dozens of times by now, that I am not losing my mind, I am having PTSD and this is what it looks like. She swears to me I will get better and not die during a panic attack when the claustrophia from the pressure on my chest and that feeling of being invisible was so profound and terrifying I could not only not breathe, I could not imagine ever breathing ever. I have seen her alot these last few weeks, there is no other way. We've done EMDR sessions that are deep and are specific to releasing trauma from your psyche, and I recommend them. I had thought I also was experiencing some waves of anxiety, but I can see now that anxiety was the wrong word, that it was just a smokescreen. What's really there is heartbreak, unbearable grief. And homesickness. That is my inheritance and my process right now.

I hope that you, dear reader, in this moment, take stock of who is left in your life that you can turn to, even if it is just one person. Who that person is may surprise you, and who they are not will also surprise you. Even if it is someone you don't really know, but talk to on PANDAS facebook page or blog, it is imperitive that you have someone somewhere to reach out to. I lost so many people along the way. Seven years is just too long to expect anyone to just hang in there. Oh well. For some, seven months is too long. In the end, our friends and families will show their true character, and what kind of people and friends they really are. So will we.

I am blessed to have people in my life with strong character. An amazing sister that stands by me so closely, and has been so there throughout this incredible journey, that no matter how crazy or bad or breathless or what a loser I feel like, I can turn to her. I am SO GRATEFUL, for you, Robin.

Diana, my very dear incredible friend, PANDAS mother to many, day in and day out, visionary and co-conspirator.

Not to mention an extraordinary group of women who happen to also have children with PANDAS; so many, that are always right in it for each other, showing the world a better way to be there, what being a friend is really about.

My mother-in-law, a beautiful woman who knows how to listen, how to express compassion, how to create context, how to offer strength. I am SO Grateful.

My friend Jody is always there when I reach out and for that I am SO Grateful.

Well, its nearly 2 weeks since I’ve experienced a real panic attack. Sometimes I do feel it begin to come on, but I can manage it down. If I can't within just a few minutes, I pick up the phone. I find that if I just connect to someone for a moment, it reexpands my world and I almost instantly feel better, like, pulling the plug on the isolation part that seems real in the moment but it is not. Its just a remnant of those long terrible nights at home with my kid freaking out and no one to call and no where to turn...the memories of those nights. I mean, face it, you can't bring your flaring PANDAS kid into the ER simply because he's hallucinating. What are they going to do anyway? Shove him full of meds? or worse? Threaten to hospitalize him? Or to take him away from you? So its not just that you feel stuck - YOU ARE ABSOLUTELY STUCK!!! Well, that's what it feels like anyway. And to some degree, yes you are stuck. We have all heard of those terrible stories of children being taken from their parents for treating PANDAS. But the chances of this are remarkably slim. At the worst, more than likely, they will just give your child a bunch of anti-anxiety medication and tell you to followup with a psychiatrist. And you all would have survived another night.

And, hopefully one day soon, this will all change! It is changing right now. More and more people and providers know about PANDAS. NIMH is doing their best to recruit some brilliant researchers and providers and get the word out there more and more, so that within just a few years hopefully all front line pediatric providers including teachers and occupational therapists, doctors, nurse practitioners, school nurses, psychiatrists, psychologists, immunologists, guidance counselors, neurologists, you name it - anyone working with children - will know to think about PANDAS first. NIMH believes that at the minimum, 1 in every 200 children has PANDAS. It will happen in our lifetime, but maybe, not for our own children.

Someone told me recently they had to call the police on their PANDAS teenager that was becoming violent and it was so upsetting, but it turned out that one of the policemen knew about PANDAS and was so kind to this child, so supportive. THIS is what we need more of, and THIS is where we are going, it just is taking time.

Right now I feel stronger than I have in a long time, because things are beginning to make sense. I look forward to sharing more with you very soon, about this next part of my journey back.

Meanwhile, Stay strong out there!

LOVE AMY

Friday, June 13, 2014

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.