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.
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?
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
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.
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.
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.
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.
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.
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.
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.
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.
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...
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.
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.
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.
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