I've taken a looooong time to think about this, this question as to whether once someone's life is literally decimated by having a child with PANDAS, if it's ever really recoverable. Not just manageable again, or, less stressful, or "better", whatever that means. Not just getting over the bankruptcy, or the divorce, or the total loss of human comforts that accompany the life of PANDAS. So that you're moving on, or moving forward, in other realms.
I mean, can your soul be restored to a level of trust and love and happiness and faith, once you've lived in PANDAS hell?
As luck would have it, my child with PANDAS continues to thrive. Although, he had a blip, some profound immune issues that showed up this past year, related to the really bad toxic mold in the house he's living in at school. It took time to figure this out, this crash. It almost looked like PANDAS but it wasn't. The anxiety was not PANDAS anxiety, it was real anxiety about the health decline and fear that PANDAS was around the corner. We were both anxious. PANDAS didn't come. But we thought it would, so both of us went through some horrific fearful skin crawling sleepless time back in PANDAS hell before we figured out what was really going on and were able to fix it.
If there is even a slight chance, that there is mold (from waterdamaged building material, the kind that is toxic) I have learned in the last couple of years that it will be impossible to get your child with PANDAS or Lyme related illness sustainably better until this goes away for good, meaning either remediate and / or move, plus get your child treated or at least tested! for mold related illness.
So all that said, this is what I see so far.
NO. There is no life beyond PANDAS - yet. Its been over 3 years now since Lance's last IVIg, and he just got better and better and better and better, until this mold thing hit. Then, within moments, the two of us were in PANDAS hell. It was right there, in me, all I had to do was drop right in. Actually, it reached up and grabbed me and pulled me in. Maybe this will change someday, maybe it won't. I have no idea when i'm going to stop trying to fix his health.
But, on the other hand, I have found so much happiness beyond the life I lived inside of PANDAS. so the other answer is YES. There is life beyond it.
I have found myself capable at times of actually forgetting the day to day misery, and to open my heart again, to expand my world to include more good things again, instead of the way PANDAS becomes the entire world, all the time, with everything else dead and gone.
How much percent of my life is beyond PANDAS now? Well that's a hard question. The reason is, that my work is still all about it. Its not like I'm going forward saying ok, I will never think about or talk about PANDAS again. Every day, I'm still all about it. So that has to count.
The real question is, how much of my life is beyond the personal trauma of PANDAS and includes things like being able to talk to people about things other than PANDAS? In this way, I've made tremendous progress. My life feels like its getting bigger and finding happy times and moments of true contentedness. Peace even! Love again! Opening my heart to a non-PANDAS man, a wonderful big hearted loving man and letting my pain and fear and damage be seen. So hard, and easy, both.
Falling back into being human is a little bit like riding a bicycle. Its been there all along, but in the background. or seriously buried and unreachable, worse than unreachable, Non-distinguishable. Nonperceptable. But falling back into the good place is kind of like, natural. Precious and tender. And familiar. Like, remembering how much I love the desert! Or smelling orange blossoms. or riding my bike. or kissing. The body memory of the good is there, along side the bad. I move a bunch of steps forward and then I find myself retreating for awhile, back to safety. There is comfort in the known, even if its bad, its familiar. I still deny myself things, because I got so good at doing that for all those years I don't realize I'm doing it until it suddenly occurs to me that the solution to a problem that's been really bugging me is so obvious and right there but I got so used to thinking small about anything I needed or wanted, I forgot I can actually look for solutions now. Sometimes I have to literally ask someone if something is ok, like, is it ok if I get curtains for my bedroom because the light outside my window is so bright at night its hard to sleep sometimes even with the blinds, plus it would be so much cozier. What a crazy question is that?? Is it ok if I join a gym because I just can't get outside enough to get the kind of exercise I need? Who asks these things? Plus, i still haven't done them, either of these things, even though I've gotten permission from several people now. Because I feel guilty. Or fearful. I'm more used to not having them, than having them. I know that you know what I mean. If every single thing you ever want or need is not as important as the time or effort or money you need for something for your PANDAS child, then its like, a no-brainer, you just stop caring about what you need. its the only solution to that problem. So sometimes I still have to call and ask my sister, is it ok if I just feel like being outside walking today? Is it ok if I am content just hanging out on a Sunday morning puttering around my cute apartment listening to Pandora? or going out for a nice dinner or to the beach? or buy some clothing item I need? Am I doing anyone a disservice if I find myself able to be happy in this moment? I still ask, is this ok? Every time I take a step forward, I can tell because the tears come. Like, my heart gets wrenched open and the pain has to fall out of the way before that part be filled with goodness again. But it happens. Sometimes, most of the time, the tears come wordlessly, just a wave of grief for the whole thing. Sometimes it has a name. Mostly, its personal and happens in a moment and passes. Sometimes, I share it, if it happens when I'm with someone. Those moments are meant to be expressed and witnessed. Our grief has been invisible too long.
Well, I can see that maybe I can continue to have a life that includes what I went through with PANDAS, without the trauma being my compass, including love, and being in service to families struggling with their children, in a way that I can be happy and whole. In some ways, maybe a zillion ways, I will always be defined by PANDAS, who I am and am not because of it, who I am becoming because of it, what I am learning because of it and how much healing can happen in spite of it.
I pray that your journey is easier, that you find all company the you need during your brief stints in PANDAS hell, that they are brief! and that everything you need on the road to recovery is right there for you.
On this EAster day, may we all find our souls resurrected in love and faith.
And always find the strength to never ever give up on our children.
with love,
Amy
Sunday, March 27, 2016
Saturday, September 12, 2015
Life Beyond PANDAS?
OK, its now 12 weeks since I've relocated to my new practice. I like it. Its hard, though, so much harder than my old practice in a totally different way. The people are awesome. The office is so humble and dedicated to take the best possible care of the patients, and also of each person that works there. I love that.
But clinically, its hard. Its like, jumping out of the frying pan into the fire. Because PANDAS is in itself, clinically very challenging to treat, but something about it makes sense to me now, I just get it. But PANDAS with Lyme and coinfections, that's tough. Its hard in kids and its even tougher in adults, because so many of them have imbalances going in and are incredibly sick. Kids are still growing, producing enzymes and growth hormone and are super programmed to heal. Kids overall are more physically resilient and able to beat these illnesses. but its hard.
So I put myself back in school. Every night I listen to training tapes and videos about Lyme and coinfection treatment. I'm doing an extended weekly training in the powerful German biological medicine behind the homeopathic and herbal Pekana / Syntrion and SanPharma product line. I'm learning LDA/LDI. My brain sometimes feels like its going to explode, or maybe implode is more like it. But this is why i'm here, this is why I put myself in this specific practice, for the training and to up my clinical game so that no child that walks in with PANDAS and/or Lyme or whatever immune dysruption they throw at me, leaves unhealed. Thank God for the most part, my brain is holding up.
Personally, I like it here on the peninsula. I like the diversity, the big trees. Lots of energy but also lots of nature. I like my house, it feels grounding and safe and its pretty and open. There's alot of life happening here, people living life and lots of exploration to be had.
But life beyond PANDAS? I still don't know.
My extended length of time in PANDAS hell, and the losses incurred there, still effect me. I feel it every day. I still like I'm crawling out from under a rock. I still feel somewhat like a foreigner, although I do have some times where I feel connected. But overall, I still feel like a visitor on the planet, a stranger to the good things of life. Writing this is bringing up sadness. My connection to life broke, yes. I have done alot of healing work and likely more to come.
I do believe I am infinitely more cohesive within myself and healed than i have been in many years. My soul underwent unspeakable darkness and terror. I have to still believe that somehow my future is still open, that i'm a good person and that I am worth loving and including. That i will find a way to honestly and tenderly re-open my heart and allow people back in. Aside from of course, other PANDAS moms and providers who share my pain. How can I include being present to the absolute fragility of my heart yet still find a way to let others in? I don't want to live the rest of my life in isolation.
Its not that I blame people who have not been through PANDAS; that have happy healthy children, marriages, money and have been doing things with normal person problems instead of what I've been through. At least I don't think so. Its just that I feel like I don't have anything in common with any of them. I just feel like such a stranger to that world. Oh, plus, you know, I got divorced when Lance was at the zenith of sickest and we were in bankruptcy. Maybe I never had a chance to process that before, and maybe that's part of what I'm feeling now, the loss of that love. The solitary-ness of being almost 60 in a new lovely place, the world an open door - but am I seriously knocking hard enough? I have to look at this, I am realizing right now. More to come on that.
The good news is that awesomely, without a doubt, many children with PANDAS get better faster now, because diagnosis is more available. Many parents stumble into learning about PANDAS more quickly for most part. So that new PANDAS families may not have to go through the utter personal oblivion as many of us who came before. However, there are still not enough providers that know how to treat PANDAS kids fully.
In August I was lucky to be able to attend and briefly address the Missouri PANDAS conference, on behalf of PANDASNetwork.org. The conference was produced by an amazing group of moms, of course, and on the first day they gave medical continuing education units to over 60 providers that attended. Still, so many parents came up to me and cried that they cannot access antibiotics or IVIg for their children, and that travelling for care is very difficult and expensive. So many children - even with a KNOWN PANDAS diagnosis, still suffering due to lack of local care! This is intolerable!!
Last week I called a family with a PANDAS child who also has Lyme because I realized I hadn't heard from them all summer. The mom said she hadn't called because their 7 yr old DS has been totally 100% better for months and they didn't want to jinx it. That is so amazing. This little boy was so ill. Five years old, big time OCD and behavioral regression, PANDAS and Lyme IgM+. We treated him for a year with antibiotics and herbs, finally talked them into doing an IVIg early in the spring, and he almost immediately turned the clinical corner. He's 100%.
KIDS GET BETTER. FOR THEM THERE IS LIFE BEYOND PANDAS.
If your child isn't better, its because you're missing something that needs to be treated so keep digging. OR...PLEASE do IVig if you haven't, because it can be a total game changer.
So...Life Beyond PANDAS, for our kids? YES!
For us? hmmmmm
As connected as i am to other parents on facebook and social media, I know that, for the most part, we are a sorry lot. Even so I can only hope to prove that there IS life and love and freedom and true happiness beyond PANDAS for all of us. And in the meantime - and forever - we always have each other.
Thank you for always being there for me during my journey, and for all of the endless work you put into healing your child and taking care of your family and all the rest of us.
Please, Don't ever give up on your child, keep looking.
with Love
Amy
But clinically, its hard. Its like, jumping out of the frying pan into the fire. Because PANDAS is in itself, clinically very challenging to treat, but something about it makes sense to me now, I just get it. But PANDAS with Lyme and coinfections, that's tough. Its hard in kids and its even tougher in adults, because so many of them have imbalances going in and are incredibly sick. Kids are still growing, producing enzymes and growth hormone and are super programmed to heal. Kids overall are more physically resilient and able to beat these illnesses. but its hard.
So I put myself back in school. Every night I listen to training tapes and videos about Lyme and coinfection treatment. I'm doing an extended weekly training in the powerful German biological medicine behind the homeopathic and herbal Pekana / Syntrion and SanPharma product line. I'm learning LDA/LDI. My brain sometimes feels like its going to explode, or maybe implode is more like it. But this is why i'm here, this is why I put myself in this specific practice, for the training and to up my clinical game so that no child that walks in with PANDAS and/or Lyme or whatever immune dysruption they throw at me, leaves unhealed. Thank God for the most part, my brain is holding up.
Personally, I like it here on the peninsula. I like the diversity, the big trees. Lots of energy but also lots of nature. I like my house, it feels grounding and safe and its pretty and open. There's alot of life happening here, people living life and lots of exploration to be had.
But life beyond PANDAS? I still don't know.
My extended length of time in PANDAS hell, and the losses incurred there, still effect me. I feel it every day. I still like I'm crawling out from under a rock. I still feel somewhat like a foreigner, although I do have some times where I feel connected. But overall, I still feel like a visitor on the planet, a stranger to the good things of life. Writing this is bringing up sadness. My connection to life broke, yes. I have done alot of healing work and likely more to come.
I do believe I am infinitely more cohesive within myself and healed than i have been in many years. My soul underwent unspeakable darkness and terror. I have to still believe that somehow my future is still open, that i'm a good person and that I am worth loving and including. That i will find a way to honestly and tenderly re-open my heart and allow people back in. Aside from of course, other PANDAS moms and providers who share my pain. How can I include being present to the absolute fragility of my heart yet still find a way to let others in? I don't want to live the rest of my life in isolation.
Its not that I blame people who have not been through PANDAS; that have happy healthy children, marriages, money and have been doing things with normal person problems instead of what I've been through. At least I don't think so. Its just that I feel like I don't have anything in common with any of them. I just feel like such a stranger to that world. Oh, plus, you know, I got divorced when Lance was at the zenith of sickest and we were in bankruptcy. Maybe I never had a chance to process that before, and maybe that's part of what I'm feeling now, the loss of that love. The solitary-ness of being almost 60 in a new lovely place, the world an open door - but am I seriously knocking hard enough? I have to look at this, I am realizing right now. More to come on that.
The good news is that awesomely, without a doubt, many children with PANDAS get better faster now, because diagnosis is more available. Many parents stumble into learning about PANDAS more quickly for most part. So that new PANDAS families may not have to go through the utter personal oblivion as many of us who came before. However, there are still not enough providers that know how to treat PANDAS kids fully.
In August I was lucky to be able to attend and briefly address the Missouri PANDAS conference, on behalf of PANDASNetwork.org. The conference was produced by an amazing group of moms, of course, and on the first day they gave medical continuing education units to over 60 providers that attended. Still, so many parents came up to me and cried that they cannot access antibiotics or IVIg for their children, and that travelling for care is very difficult and expensive. So many children - even with a KNOWN PANDAS diagnosis, still suffering due to lack of local care! This is intolerable!!
Last week I called a family with a PANDAS child who also has Lyme because I realized I hadn't heard from them all summer. The mom said she hadn't called because their 7 yr old DS has been totally 100% better for months and they didn't want to jinx it. That is so amazing. This little boy was so ill. Five years old, big time OCD and behavioral regression, PANDAS and Lyme IgM+. We treated him for a year with antibiotics and herbs, finally talked them into doing an IVIg early in the spring, and he almost immediately turned the clinical corner. He's 100%.
KIDS GET BETTER. FOR THEM THERE IS LIFE BEYOND PANDAS.
If your child isn't better, its because you're missing something that needs to be treated so keep digging. OR...PLEASE do IVig if you haven't, because it can be a total game changer.
So...Life Beyond PANDAS, for our kids? YES!
For us? hmmmmm
As connected as i am to other parents on facebook and social media, I know that, for the most part, we are a sorry lot. Even so I can only hope to prove that there IS life and love and freedom and true happiness beyond PANDAS for all of us. And in the meantime - and forever - we always have each other.
Thank you for always being there for me during my journey, and for all of the endless work you put into healing your child and taking care of your family and all the rest of us.
Please, Don't ever give up on your child, keep looking.
with Love
Amy
Thursday, May 21, 2015
WHERE DID I GO?
I've been waiting to post something until I have something worth saying. Each word on this blog is holy and precious and integral to the story and the unfolding of Lance and of myself back into our lives in a post-PANDAS world.
I'm changing. I'm changed. I'm on the threshold of a new life. Its the right time and the right place and the right thing but its scary today.
But before I get into that I all, let me tell you about my son. My son who just completed his freshman of college. My son who is awesome and brilliant and loving and called me adorable the other day.
My son who is HEALTHY. Healthy. And his health continues to improve.
Two nights ago he told me HE NEVER EVEN THINKS ABOUT HAVING TICS ANYMORE. Shocking. He no longer takes anti-inflammatory herbs at bedtime, just in case, or feels the need to pop a few ibuprofen from the massive bottle he carried around in his back pack for years - JUST in case a tic MIGHT come. He's off of melatonin after all these years, for the most part. He goes to sleep like a normal person, now, at 19, nine years after the big PANDAS break, after 7 unbelievably sleepless exhausting years, he goes to sleep like a normal person, without wondering if the tics will come and torture him and drive him crazy before the morning comes.
My son who is HEALTHY. How about that? Believe me I say this with profound awe and humility and daily gratitude.
Every single challenge he has had this year, however big or small, I am aware of the grace of having a normal child with Normal Kid Problems. What a completely different existence, just to have Normal Kid Problems.
But when will i declare him healed? When will I stop watching watching watching, wondering and thinking about his tics? Someone just asked me this the other night. The answer is, I don't know. How can any of us know? If you ask me I will tell you, I see him as healed. All the evidence is there. But what does life look like for healthy post-PANDAS 19 year olds? 29 year olds? Will I ever not even think about PANDAS for a single day? The way he has stopped worrying about PANDAS, and stopped worrying that the tics are coming back, tonight?
I just don't know. I don't know, but I'm willing. That much, I can say.
Its hard to believe that just one year ago, exactly, last Memorial Day weekend, I had my first PTSD panic attack. (See I'm Coming Out, Part I, II and III, June 2014). Now, one year later, I am well. I am GOOD. I am evolving. And although I will never be the same - my innocence was absolutely ripped from me - I am leading with my happiness, and miracles are unfolding for me like crazy, every day.
There is a line from a psalm, I don't know which one it is, but it says something so simple - God, the soul you gave to me is pure. I wasn't sure about that for a long time. Because PANDAS infected me, it infected my soul. It sucked the life out and my faith, right out of my soul, and in its place it planted a zillion filthy black jagged shards of glass. And pus. It left me in a broken bloody heap by the side of the road. But I see and own that I have purged that level of PANDAS from me. At the level of my soul,I am fully restored. I do feel like my connection to the earth and to my God and to my deepest nature are fully realigned. I am so grateful every day. This was not an accident. If you have read these pages, you know my journey. I scraped and clawed my way back from PANDAS hell one day at a time, one hour at a time, and often one minute at a time. I know you have done and are doing the same. I have no doubt that it is our journey, our collective PANDAS journey, that I am living, with its downs and ups. And I am lucky, so lucky and willing to hold a space for YOU to find some healing; to disinfect your fractured purulent PANDAS soul and find your way back to goodness, to purity, to wholeness. When you are lucky enough to get back to having Normal Child Problems.
But tonight I'm scared. I'm scared of all this changing. I'm scared of picking myself up from my little house in this little town, this house that has been my refuge and my hell and my home and my prison. This house that watched our family shatter into pieces. This house that knows the darkest secrets of the darkest nights of PANDAS hell. I'm leaving it. And I'm afraid. And relieved, and interested, and blessed, and insecure, and solid, and successful, and scared. And I'm not invisible. I'm not invisible any more.
At the level of my soul, I am restored. The rest will come.
So, looking ahead, I know that the question of Where Did I Go is not nearly as important as the question Where Am I Going? Where can I go? How can my life look as a healthy, social, balanced person with pure soul? A woman with a healthy child and a second chance? No money, no credit, but a huge heart and relentless dedication to the cause.
More to Come on that one.
Much Love to YOU, And whatever you do...
DO NOT GIVE UP.
NEVER EVER EVER GIVE UP ON YOUR CHILD OR ON YOURSELF.
Amy
I'm changing. I'm changed. I'm on the threshold of a new life. Its the right time and the right place and the right thing but its scary today.
But before I get into that I all, let me tell you about my son. My son who just completed his freshman of college. My son who is awesome and brilliant and loving and called me adorable the other day.
My son who is HEALTHY. Healthy. And his health continues to improve.
Two nights ago he told me HE NEVER EVEN THINKS ABOUT HAVING TICS ANYMORE. Shocking. He no longer takes anti-inflammatory herbs at bedtime, just in case, or feels the need to pop a few ibuprofen from the massive bottle he carried around in his back pack for years - JUST in case a tic MIGHT come. He's off of melatonin after all these years, for the most part. He goes to sleep like a normal person, now, at 19, nine years after the big PANDAS break, after 7 unbelievably sleepless exhausting years, he goes to sleep like a normal person, without wondering if the tics will come and torture him and drive him crazy before the morning comes.
My son who is HEALTHY. How about that? Believe me I say this with profound awe and humility and daily gratitude.
Every single challenge he has had this year, however big or small, I am aware of the grace of having a normal child with Normal Kid Problems. What a completely different existence, just to have Normal Kid Problems.
But when will i declare him healed? When will I stop watching watching watching, wondering and thinking about his tics? Someone just asked me this the other night. The answer is, I don't know. How can any of us know? If you ask me I will tell you, I see him as healed. All the evidence is there. But what does life look like for healthy post-PANDAS 19 year olds? 29 year olds? Will I ever not even think about PANDAS for a single day? The way he has stopped worrying about PANDAS, and stopped worrying that the tics are coming back, tonight?
I just don't know. I don't know, but I'm willing. That much, I can say.
Its hard to believe that just one year ago, exactly, last Memorial Day weekend, I had my first PTSD panic attack. (See I'm Coming Out, Part I, II and III, June 2014). Now, one year later, I am well. I am GOOD. I am evolving. And although I will never be the same - my innocence was absolutely ripped from me - I am leading with my happiness, and miracles are unfolding for me like crazy, every day.
There is a line from a psalm, I don't know which one it is, but it says something so simple - God, the soul you gave to me is pure. I wasn't sure about that for a long time. Because PANDAS infected me, it infected my soul. It sucked the life out and my faith, right out of my soul, and in its place it planted a zillion filthy black jagged shards of glass. And pus. It left me in a broken bloody heap by the side of the road. But I see and own that I have purged that level of PANDAS from me. At the level of my soul,I am fully restored. I do feel like my connection to the earth and to my God and to my deepest nature are fully realigned. I am so grateful every day. This was not an accident. If you have read these pages, you know my journey. I scraped and clawed my way back from PANDAS hell one day at a time, one hour at a time, and often one minute at a time. I know you have done and are doing the same. I have no doubt that it is our journey, our collective PANDAS journey, that I am living, with its downs and ups. And I am lucky, so lucky and willing to hold a space for YOU to find some healing; to disinfect your fractured purulent PANDAS soul and find your way back to goodness, to purity, to wholeness. When you are lucky enough to get back to having Normal Child Problems.
But tonight I'm scared. I'm scared of all this changing. I'm scared of picking myself up from my little house in this little town, this house that has been my refuge and my hell and my home and my prison. This house that watched our family shatter into pieces. This house that knows the darkest secrets of the darkest nights of PANDAS hell. I'm leaving it. And I'm afraid. And relieved, and interested, and blessed, and insecure, and solid, and successful, and scared. And I'm not invisible. I'm not invisible any more.
At the level of my soul, I am restored. The rest will come.
So, looking ahead, I know that the question of Where Did I Go is not nearly as important as the question Where Am I Going? Where can I go? How can my life look as a healthy, social, balanced person with pure soul? A woman with a healthy child and a second chance? No money, no credit, but a huge heart and relentless dedication to the cause.
More to Come on that one.
Much Love to YOU, And whatever you do...
DO NOT GIVE UP.
NEVER EVER EVER GIVE UP ON YOUR CHILD OR ON YOURSELF.
Amy
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.
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
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.
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.
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.
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