"Rock bottom became a solid foundation upon which I rebuilt my life." ― J.K. Rowling
One thing I notice about gratitude. It just rises to the top. While faith is a choice that i wrestle with, gratitude just naturally shows up. It floats right up to the top of awareness like a breath of fresh air, and puts everything in place.
Right now I am feeling incredibly grateful - for myself, and for my brain's recovery.
I feel like I have gone through the eye of the storm, or the eye of the needle, of my PTSD. The panic attacks have really subsided, and every day I feel like my mental health is being restored to me. I cannot express the gratitude I have for my own self right now, my own thoughts.
I remember now. I used to love myself. I remember I used to completely trust my feelings and my thoughts. I remember I loved to spend time with myself doing things in the world. I remember the world was safe and loving as a context for my life. I remember now.
PANDAS stole my peace of mind and I was afraid I might never come back. But I am remembering now.
I am finding myself incredibly clear. Its familiar. Its intense, though. Its more laser-like than, say, a sitting back spacious kind of clarity. But not intense in a bad way. Maybe the intensity simply matches the degree I need that clarity right now to put my life back in order. I need the strength it will bring me to do the next round of hard work. I need it to take stock, tell the truth about my life and maybe some people in my life, and let the chips fall where they may.
A few weeks ago, while I was deep inside my PTSD, I took stock of my life, what shreds are left from my PANDAS journey, and what I found terrified me. Bankrupt, no credit, no savings left, no homes left, no marriage, living in this far away land, in exile, facing starting over from from scratch at 58 years old. This scared the living crap out of me and was actually a part of the panic. (Just so you know, I recommend NOT doing that when you are in the middle of a mental health breakdown. The last thing you need are more reasons to be terrified). A breakdown which, by the way, was absolutely inevitable and necessary. I was already broken down but I was fighting it. I had to go all the way down, to the rockest bottom. I had to completely dissemble any shred of belief I may have left that I had any control over anything. I had to fall to the place beyond which I could not fall any further. God, I hope I can't fall further. The only other place to go would be total nervous breakdown, which I can only imagine, includes meds and a hospital stay. Or death. If I didn't go there this time, I never will.
I can't pretend that I can control anything. I can't pretend I can fix my circumstances very easily and I can't pretend I can't fix them. I've always been enough before and I can only guess I will continue to be so. I certainly cannot control people. I cannot control which people stay in my life and which don't. This is the most painful of all. In fact, one thing PANDAS has taught me is that I can't really control anything. For awhile, I didn't even have control of my mental health. That was the scariest thing of all. Not only for me, but I'm sure for people around me.
So today, I remember. Today I am clear. Today I feel gratitude. Today I feel right relationship within myself, a lining up of parts that feels familiar. And today will be a good day. Today I will tell the truth. Well, I always try to tell the truth, but today, I will trust that the truth that I tell is reliable. And for that, I couldn't be more grateful.
Tuesday, June 17, 2014
Sunday, June 15, 2014
I Am Coming Out (part 3): Back From the Edge...
"THE EDGE, there is no honest way to explain it because the only people who really know where it is are the ones who have gone over. ― Hunter S. Thompson"
One thing I can say is, its not just that PANDAS came into my world. Its that every single thing that was good, left it. Everything. I will not recount what is already on these blog pages, the list is too long and I am unwilling to be victimized by it any more. But I can say this. My world got way too small for way too long. I could handle it all, but handling it alone, in exile, for so long, please. I know plenty of families and moms that while they are tortured by this illness, they have the added resilience that comes from husbands and families, friends, homes and the rest of life that we lost in the nearly 4 years it took to diagnose my son and the nearly 4 years it then took to get him better. Many others, like me, are left with nothing but a little teeny world that fits on a pinhead. So if regrowing my personal life is paramount to any early or enduring success of my healing... where to begin? Regaining perspective from within, that is my goal. Or creating one from scratch if that is necessary.
But can someone ever really come back from over the edge? Is it possible to find the bridge back to happiness? To restore my faith? I don't know. I do not know that I’ll ever believe in the world or a God or a person the same way. I may never regain that pure sustained connection to a high vibration of love and truth and goodness as it resonates in the universe that I believed was the essence of creation. That part of me might be broken. Or maybe, I was wrong. Maybe it was a hallucination after all. I will have to find this out.
I don’t know if I will ever feel back in sync with the rest of the world. But you know, when I really think about that, in many ways I never was anyway. I always followed my own rhythm, and lived and loved in my own way and in my own time. But the difference is, it never bothered me before. When people were flocking home from the beach because it was so freaking windy, I was just suiting up and rigging my windsurf board. As an adult, I never felt like an outsider to life; if anything, in my own quirky way I felt like I was always one or two or ten steps ahead of the crowd, or lifetimes ahead, and I didn’t really care. That is the breech. That I even give a shit.
Can the rift in my soul be repaired? I don’t know. I see other broken people and I know in my heart that they can heal. I know some people who believe they are so damaged but when I see them, I see a soul that is still pure and people that are suffering but still whole, and still worth loving. In this moment while I can’t see that about myself exactly, seeing it in others may be the first step, and I will hope for that.
So, here I stand, scratching my head. How to repair what may be irreparable.
Ultimately, all the understanding and therapy and EMDR trauma sessions and all the explaining in the world cannot fix anything, although insights are valuable and can be healing. They can help you change your mind about things.
Ultimately, I am faced with only one possibility that I know of, an inner shift that can only come from me. A leap of faith. A choice based on nothing but a feeling, an instinct. This has always been my strength, the power to choose a leap in faith. Faith is not a given. There is no already “is” faith, like a thing that you have or don’t have. Faith is a creation, a choice. I called it in, I built it, I chose it, over time, over years, from nothing but a dream, as a little girl. I remember doing that, I remember the moment it occurred to me, that I realized that faith is an option and I prayed that faith would find me, that it would stop me from being so scared. And it did, it has been my best friend all my life. Now I keep reminding myself I can create it again. Choose, Amy, just do it. But I don’t know. That bridge just feels too broken. I would have to forgive the entire fucking world, and I just can’t, not yet. No bridge can bear the weight of that.
So for now, I’m here, on this side, stuck. But at least I can see it for what it is. At some point, because I am me, I will likely find a way to call forth the courage and the will for such radical forgiveness, because the other option is simply so unappealing. Life on the wrong side of the bridge= Bad. But I don’t own that level of courage right now. I don’t know if it is even accomplishable as a purely solitary effort or may require an entire group effort, or planetary effort, or maybe a lot of drugs. Ultimately I have to find out if the road back over that bridge is still even in me, at all, or if I ultimately care enough to even be that generous as to dole out such massive amounts of forgiveness, because I’m not sure that anyone really deserves it at the moment.
Grace is a beautiful thing, it should be deserved but also, I know that the essence of grace through forgiveness is that it must be freely bestowed and for my own sole benefit, my own freedom. No one knows or cares or is burdened by my broken heart, but myself. Well, my child sees me pull it up every day, and for his benefit alone, I should push myself through this next step. But it still feels like I’d be doing the planet a favor, redemption for its own sake and all that does right now is call up resentment. How dare you for steal my life and then make it my job to somehow wrangle it back? Forgiveness for that feels miles away, light years away.
Hmmmm, so thus the dilemma continues for the moment. How to come back from over the edge?
One thing I can say is, its not just that PANDAS came into my world. Its that every single thing that was good, left it. Everything. I will not recount what is already on these blog pages, the list is too long and I am unwilling to be victimized by it any more. But I can say this. My world got way too small for way too long. I could handle it all, but handling it alone, in exile, for so long, please. I know plenty of families and moms that while they are tortured by this illness, they have the added resilience that comes from husbands and families, friends, homes and the rest of life that we lost in the nearly 4 years it took to diagnose my son and the nearly 4 years it then took to get him better. Many others, like me, are left with nothing but a little teeny world that fits on a pinhead. So if regrowing my personal life is paramount to any early or enduring success of my healing... where to begin? Regaining perspective from within, that is my goal. Or creating one from scratch if that is necessary.
But can someone ever really come back from over the edge? Is it possible to find the bridge back to happiness? To restore my faith? I don't know. I do not know that I’ll ever believe in the world or a God or a person the same way. I may never regain that pure sustained connection to a high vibration of love and truth and goodness as it resonates in the universe that I believed was the essence of creation. That part of me might be broken. Or maybe, I was wrong. Maybe it was a hallucination after all. I will have to find this out.
I don’t know if I will ever feel back in sync with the rest of the world. But you know, when I really think about that, in many ways I never was anyway. I always followed my own rhythm, and lived and loved in my own way and in my own time. But the difference is, it never bothered me before. When people were flocking home from the beach because it was so freaking windy, I was just suiting up and rigging my windsurf board. As an adult, I never felt like an outsider to life; if anything, in my own quirky way I felt like I was always one or two or ten steps ahead of the crowd, or lifetimes ahead, and I didn’t really care. That is the breech. That I even give a shit.
Can the rift in my soul be repaired? I don’t know. I see other broken people and I know in my heart that they can heal. I know some people who believe they are so damaged but when I see them, I see a soul that is still pure and people that are suffering but still whole, and still worth loving. In this moment while I can’t see that about myself exactly, seeing it in others may be the first step, and I will hope for that.
So, here I stand, scratching my head. How to repair what may be irreparable.
Ultimately, all the understanding and therapy and EMDR trauma sessions and all the explaining in the world cannot fix anything, although insights are valuable and can be healing. They can help you change your mind about things.
Ultimately, I am faced with only one possibility that I know of, an inner shift that can only come from me. A leap of faith. A choice based on nothing but a feeling, an instinct. This has always been my strength, the power to choose a leap in faith. Faith is not a given. There is no already “is” faith, like a thing that you have or don’t have. Faith is a creation, a choice. I called it in, I built it, I chose it, over time, over years, from nothing but a dream, as a little girl. I remember doing that, I remember the moment it occurred to me, that I realized that faith is an option and I prayed that faith would find me, that it would stop me from being so scared. And it did, it has been my best friend all my life. Now I keep reminding myself I can create it again. Choose, Amy, just do it. But I don’t know. That bridge just feels too broken. I would have to forgive the entire fucking world, and I just can’t, not yet. No bridge can bear the weight of that.
So for now, I’m here, on this side, stuck. But at least I can see it for what it is. At some point, because I am me, I will likely find a way to call forth the courage and the will for such radical forgiveness, because the other option is simply so unappealing. Life on the wrong side of the bridge= Bad. But I don’t own that level of courage right now. I don’t know if it is even accomplishable as a purely solitary effort or may require an entire group effort, or planetary effort, or maybe a lot of drugs. Ultimately I have to find out if the road back over that bridge is still even in me, at all, or if I ultimately care enough to even be that generous as to dole out such massive amounts of forgiveness, because I’m not sure that anyone really deserves it at the moment.
Grace is a beautiful thing, it should be deserved but also, I know that the essence of grace through forgiveness is that it must be freely bestowed and for my own sole benefit, my own freedom. No one knows or cares or is burdened by my broken heart, but myself. Well, my child sees me pull it up every day, and for his benefit alone, I should push myself through this next step. But it still feels like I’d be doing the planet a favor, redemption for its own sake and all that does right now is call up resentment. How dare you for steal my life and then make it my job to somehow wrangle it back? Forgiveness for that feels miles away, light years away.
Hmmmm, so thus the dilemma continues for the moment. How to come back from over the edge?
Saturday, June 14, 2014
I Am Coming Out (Part 2): PTSD Sucks
"Strength isn’t about how much you can handle before you break, it’s about how much you can handle after you break."
I am sharing this story for 3 reasons:
1. In case it helps you recover which I hope it will
2. In case it helps me recover which I believe it will
3. PTSD sucks but it can be overcome
A bunch of years ago, I remember being in the high desert of Taos, listening to the hum of the land and watching a sunset through these incredible steamy hot springs. I had been out there for like 4 or 5 days, just singing and thinking and praying and stretching and walking and talking to the rocks and rubbing sage on my face or whatever. I imagine there was some moon howling going on at times. So perfectly at home; happy, content. I remember an awareness of connection to the vibration of love flowing through the universe, creating me and all of life, literally constituting me. No I was not using any hallucinogens:) I was high on life. And I remember thinking that if the world ends tomorrow and I am the only human left (like in the Twilight Zone, you know….) I would be ok. That no matter what, I was and we are always connected to the flow of everything and there is nothing to be afraid of, now or ever. Granted, I was not a mom yet, so I did not have that same visceral attachment to the earth. And yes, I was definitely a little out there, but those are the kinds of thoughts you start to have when you’re way the heck out there in the wilderness by yourself for any period of time, or at least that I have. Its why I love the wilderness. These ah ha! universal principle recognition thoughts reveal themselves. Well, Thoreau had them at Walden, and was famous for them. its just what happens. Either you slip into some weird common hallucination or maybe tap into an incredible river of truth. I choose to think the latter, as a reflection of my personal integrity and nature, that life is good, and trustworthy. It is enough for me, and I am enough for life. This constitutes my faith, and this is how I have lived. Simple, internal, nothing to prove, and nothing to fear. No matter what, I have always come back to this, faith in the inherent goodness of life, love as the glue that holds the world together.
Then this thing happened. Over time, PANDAS burned a hole right through my ability to generate faith. And I am not a fickle or weak person. in fact I am one of the strongest, most devoted and loyal humans on the planet. PANDAS ripped a breech in my most fundamental orientation to life, the knowing that no matter what it looks like in the moment, the principle that drives life as we know it is inherently good. That my personal connection to life is enough. That our life force is sustained through a loving universe. And its not only that it didn’t go down that way, its not only how awful the things were that actually happened. It was that the prolonged anguish invaded my psyche and soul, like a virus, and inserted itself right into my DNA, right into that place where my faith used to live. And replicated itself, in secret. Like a virus, like a parasite, like an intracellular infection, like PANDAS of the soul
And that set off the series of panic attacks I experienced over the last couple of months. Just as I was starting to feel better! Just as I was opening my heart back up. Just as I began to relax and trust and land back inside myself, instead of peace, or faith, or space, deep down, in my familiar self - instead of me, I encountered this shocking fount of anguish. and a huge fear thing that came on. Fear that it would simply kill me and a crushing feeling in my chest of the anguish and I couldn’t breathe. wtf! That= panic. I ended up in the ER. I thought maybe I was having a heart attack. WTF!! it was a panic attack, yet...I had nothing to be panicking over! Nothing! Things were GOOD!!
This is PTSD, true PTSD. Post War Syndrome. Just when you should be feeling better, you're feeling worse - sometimes. And inappropriately. And maybe having panic attacks, or pictures and memories of terrible moments that constantly come back and make you feel just as awful as you did when it happened, or worse even. Because now you're totally judging yourself for feeling bad on top of how bad you may be feeling. And people around you think, what is your problem NOW? Aren't you EVER going to be happy? Your kid is well now, all this stuff, he got into a great school, blah blah fucking blah why are you crying now?? Well, what can they possibly know about me? Or anyone who cannot understand yet wants to believe they can judge me and what I have been through, what any of us have been through, and what the aftermath looks like, and whether or not I am a trust worthy lovable human being worth supporting. All they do is add to the trauma, with all their good intentions.
Fortunately, I have an amazing therapist I have seen on and off over the nearly 8 years of Lance's illness, who knows me really well. She knew me from the beginning, and has seen me in alot of different spaces, and has assured me, probably dozens of times by now, that I am not losing my mind, I am having PTSD and this is what it looks like. She swears to me I will get better and not die during a panic attack when the claustrophia from the pressure on my chest and that feeling of being invisible was so profound and terrifying I could not only not breathe, I could not imagine ever breathing ever. I have seen her alot these last few weeks, there is no other way. We've done EMDR sessions that are deep and are specific to releasing trauma from your psyche, and I recommend them. I had thought I also was experiencing some waves of anxiety, but I can see now that anxiety was the wrong word, that it was just a smokescreen. What's really there is heartbreak, unbearable grief. And homesickness. That is my inheritance and my process right now.
I hope that you, dear reader, in this moment, take stock of who is left in your life that you can turn to, even if it is just one person. Who that person is may surprise you, and who they are not will also surprise you. Even if it is someone you don't really know, but talk to on PANDAS facebook page or blog, it is imperitive that you have someone somewhere to reach out to. I lost so many people along the way. Seven years is just too long to expect anyone to just hang in there. Oh well. For some, seven months is too long. In the end, our friends and families will show their true character, and what kind of people and friends they really are. So will we.
I am blessed to have people in my life with strong character. An amazing sister that stands by me so closely, and has been so there throughout this incredible journey, that no matter how crazy or bad or breathless or what a loser I feel like, I can turn to her. I am SO GRATEFUL, for you, Robin.
Diana, my very dear incredible friend, PANDAS mother to many, day in and day out, visionary and co-conspirator.
Not to mention an extraordinary group of women who happen to also have children with PANDAS; so many, that are always right in it for each other, showing the world a better way to be there, what being a friend is really about.
My mother-in-law, a beautiful woman who knows how to listen, how to express compassion, how to create context, how to offer strength. I am SO Grateful.
My friend Jody is always there when I reach out and for that I am SO Grateful.
Well, its nearly 2 weeks since I’ve experienced a real panic attack. Sometimes I do feel it begin to come on, but I can manage it down. If I can't within just a few minutes, I pick up the phone. I find that if I just connect to someone for a moment, it reexpands my world and I almost instantly feel better, like, pulling the plug on the isolation part that seems real in the moment but it is not. Its just a remnant of those long terrible nights at home with my kid freaking out and no one to call and no where to turn...the memories of those nights. I mean, face it, you can't bring your flaring PANDAS kid into the ER simply because he's hallucinating. What are they going to do anyway? Shove him full of meds? or worse? Threaten to hospitalize him? Or to take him away from you? So its not just that you feel stuck - YOU ARE ABSOLUTELY STUCK!!! Well, that's what it feels like anyway. And to some degree, yes you are stuck. We have all heard of those terrible stories of children being taken from their parents for treating PANDAS. But the chances of this are remarkably slim. At the worst, more than likely, they will just give your child a bunch of anti-anxiety medication and tell you to followup with a psychiatrist. And you all would have survived another night.
And, hopefully one day soon, this will all change! It is changing right now. More and more people and providers know about PANDAS. NIMH is doing their best to recruit some brilliant researchers and providers and get the word out there more and more, so that within just a few years hopefully all front line pediatric providers including teachers and occupational therapists, doctors, nurse practitioners, school nurses, psychiatrists, psychologists, immunologists, guidance counselors, neurologists, you name it - anyone working with children - will know to think about PANDAS first. NIMH believes that at the minimum, 1 in every 200 children has PANDAS. It will happen in our lifetime, but maybe, not for our own children.
Someone told me recently they had to call the police on their PANDAS teenager that was becoming violent and it was so upsetting, but it turned out that one of the policemen knew about PANDAS and was so kind to this child, so supportive. THIS is what we need more of, and THIS is where we are going, it just is taking time.
Right now I feel stronger than I have in a long time, because things are beginning to make sense. I look forward to sharing more with you very soon, about this next part of my journey back.
Meanwhile, Stay strong out there!
LOVE AMY
I am sharing this story for 3 reasons:
1. In case it helps you recover which I hope it will
2. In case it helps me recover which I believe it will
3. PTSD sucks but it can be overcome
A bunch of years ago, I remember being in the high desert of Taos, listening to the hum of the land and watching a sunset through these incredible steamy hot springs. I had been out there for like 4 or 5 days, just singing and thinking and praying and stretching and walking and talking to the rocks and rubbing sage on my face or whatever. I imagine there was some moon howling going on at times. So perfectly at home; happy, content. I remember an awareness of connection to the vibration of love flowing through the universe, creating me and all of life, literally constituting me. No I was not using any hallucinogens:) I was high on life. And I remember thinking that if the world ends tomorrow and I am the only human left (like in the Twilight Zone, you know….) I would be ok. That no matter what, I was and we are always connected to the flow of everything and there is nothing to be afraid of, now or ever. Granted, I was not a mom yet, so I did not have that same visceral attachment to the earth. And yes, I was definitely a little out there, but those are the kinds of thoughts you start to have when you’re way the heck out there in the wilderness by yourself for any period of time, or at least that I have. Its why I love the wilderness. These ah ha! universal principle recognition thoughts reveal themselves. Well, Thoreau had them at Walden, and was famous for them. its just what happens. Either you slip into some weird common hallucination or maybe tap into an incredible river of truth. I choose to think the latter, as a reflection of my personal integrity and nature, that life is good, and trustworthy. It is enough for me, and I am enough for life. This constitutes my faith, and this is how I have lived. Simple, internal, nothing to prove, and nothing to fear. No matter what, I have always come back to this, faith in the inherent goodness of life, love as the glue that holds the world together.
Then this thing happened. Over time, PANDAS burned a hole right through my ability to generate faith. And I am not a fickle or weak person. in fact I am one of the strongest, most devoted and loyal humans on the planet. PANDAS ripped a breech in my most fundamental orientation to life, the knowing that no matter what it looks like in the moment, the principle that drives life as we know it is inherently good. That my personal connection to life is enough. That our life force is sustained through a loving universe. And its not only that it didn’t go down that way, its not only how awful the things were that actually happened. It was that the prolonged anguish invaded my psyche and soul, like a virus, and inserted itself right into my DNA, right into that place where my faith used to live. And replicated itself, in secret. Like a virus, like a parasite, like an intracellular infection, like PANDAS of the soul
And that set off the series of panic attacks I experienced over the last couple of months. Just as I was starting to feel better! Just as I was opening my heart back up. Just as I began to relax and trust and land back inside myself, instead of peace, or faith, or space, deep down, in my familiar self - instead of me, I encountered this shocking fount of anguish. and a huge fear thing that came on. Fear that it would simply kill me and a crushing feeling in my chest of the anguish and I couldn’t breathe. wtf! That= panic. I ended up in the ER. I thought maybe I was having a heart attack. WTF!! it was a panic attack, yet...I had nothing to be panicking over! Nothing! Things were GOOD!!
This is PTSD, true PTSD. Post War Syndrome. Just when you should be feeling better, you're feeling worse - sometimes. And inappropriately. And maybe having panic attacks, or pictures and memories of terrible moments that constantly come back and make you feel just as awful as you did when it happened, or worse even. Because now you're totally judging yourself for feeling bad on top of how bad you may be feeling. And people around you think, what is your problem NOW? Aren't you EVER going to be happy? Your kid is well now, all this stuff, he got into a great school, blah blah fucking blah why are you crying now?? Well, what can they possibly know about me? Or anyone who cannot understand yet wants to believe they can judge me and what I have been through, what any of us have been through, and what the aftermath looks like, and whether or not I am a trust worthy lovable human being worth supporting. All they do is add to the trauma, with all their good intentions.
Fortunately, I have an amazing therapist I have seen on and off over the nearly 8 years of Lance's illness, who knows me really well. She knew me from the beginning, and has seen me in alot of different spaces, and has assured me, probably dozens of times by now, that I am not losing my mind, I am having PTSD and this is what it looks like. She swears to me I will get better and not die during a panic attack when the claustrophia from the pressure on my chest and that feeling of being invisible was so profound and terrifying I could not only not breathe, I could not imagine ever breathing ever. I have seen her alot these last few weeks, there is no other way. We've done EMDR sessions that are deep and are specific to releasing trauma from your psyche, and I recommend them. I had thought I also was experiencing some waves of anxiety, but I can see now that anxiety was the wrong word, that it was just a smokescreen. What's really there is heartbreak, unbearable grief. And homesickness. That is my inheritance and my process right now.
I hope that you, dear reader, in this moment, take stock of who is left in your life that you can turn to, even if it is just one person. Who that person is may surprise you, and who they are not will also surprise you. Even if it is someone you don't really know, but talk to on PANDAS facebook page or blog, it is imperitive that you have someone somewhere to reach out to. I lost so many people along the way. Seven years is just too long to expect anyone to just hang in there. Oh well. For some, seven months is too long. In the end, our friends and families will show their true character, and what kind of people and friends they really are. So will we.
I am blessed to have people in my life with strong character. An amazing sister that stands by me so closely, and has been so there throughout this incredible journey, that no matter how crazy or bad or breathless or what a loser I feel like, I can turn to her. I am SO GRATEFUL, for you, Robin.
Diana, my very dear incredible friend, PANDAS mother to many, day in and day out, visionary and co-conspirator.
Not to mention an extraordinary group of women who happen to also have children with PANDAS; so many, that are always right in it for each other, showing the world a better way to be there, what being a friend is really about.
My mother-in-law, a beautiful woman who knows how to listen, how to express compassion, how to create context, how to offer strength. I am SO Grateful.
My friend Jody is always there when I reach out and for that I am SO Grateful.
Well, its nearly 2 weeks since I’ve experienced a real panic attack. Sometimes I do feel it begin to come on, but I can manage it down. If I can't within just a few minutes, I pick up the phone. I find that if I just connect to someone for a moment, it reexpands my world and I almost instantly feel better, like, pulling the plug on the isolation part that seems real in the moment but it is not. Its just a remnant of those long terrible nights at home with my kid freaking out and no one to call and no where to turn...the memories of those nights. I mean, face it, you can't bring your flaring PANDAS kid into the ER simply because he's hallucinating. What are they going to do anyway? Shove him full of meds? or worse? Threaten to hospitalize him? Or to take him away from you? So its not just that you feel stuck - YOU ARE ABSOLUTELY STUCK!!! Well, that's what it feels like anyway. And to some degree, yes you are stuck. We have all heard of those terrible stories of children being taken from their parents for treating PANDAS. But the chances of this are remarkably slim. At the worst, more than likely, they will just give your child a bunch of anti-anxiety medication and tell you to followup with a psychiatrist. And you all would have survived another night.
And, hopefully one day soon, this will all change! It is changing right now. More and more people and providers know about PANDAS. NIMH is doing their best to recruit some brilliant researchers and providers and get the word out there more and more, so that within just a few years hopefully all front line pediatric providers including teachers and occupational therapists, doctors, nurse practitioners, school nurses, psychiatrists, psychologists, immunologists, guidance counselors, neurologists, you name it - anyone working with children - will know to think about PANDAS first. NIMH believes that at the minimum, 1 in every 200 children has PANDAS. It will happen in our lifetime, but maybe, not for our own children.
Someone told me recently they had to call the police on their PANDAS teenager that was becoming violent and it was so upsetting, but it turned out that one of the policemen knew about PANDAS and was so kind to this child, so supportive. THIS is what we need more of, and THIS is where we are going, it just is taking time.
Right now I feel stronger than I have in a long time, because things are beginning to make sense. I look forward to sharing more with you very soon, about this next part of my journey back.
Meanwhile, Stay strong out there!
LOVE AMY
Friday, June 13, 2014
I Am Coming Out (part 1)
Out of what, you may ask?
Out of a daze. Out of my Mind with a Capital M (the bad part). Out of prison. Out of silence. Out of an incredible personal crash.
I am coming out to tell the hidden story, the invisible trauma of PANDAS. The devastation of a mother's soul, and the journey back.
I've been afraid to tell this story except to a very few brave humans who have tried to hang in there with me. Its a story I must tell, I must speak the words out loud to another, for it to make any sense, but I see that the burden on those few remaining friends and family - its too great. It hurts them. My story is simply too much to bear and more than any mere mortal should have to, except myself. And I shouldn't have to either. I am sorry for the pressure I have put on anyone to listen to me, to understand me, to throw me some humanity when I got so lost these last couple of months. So, hopefully, anyone choosing to read this blog will find themselves able to stand for me, and to hold a space of light and possibility for the untold many just like me, trying to build a bridge back into the land of the living.
If you are here, reading this, you are on a PANDAS journey of some kind. Perhaps you are in PANDAS hell and desperately looking for solutions to your child's health issue. Perhaps you are struggling to hold onto a shred of personal sanity. Perhaps you are a friend or a family member trying to help, trying to understand what the heck happened to your friend and their child, or children. Where did they go? How did they fall off the ends of the earth? Perhaps you are on your own road to recovery. Perhaps you are one of the fallen, you left your family or your spouse or your friend because you couldn't handle the darkness any more and you didn't know what to do, or if you could trust them anymore. Perhaps you know me from a facebook page or perhaps, even, I take care of your child. For any of you, I hope there is something here that helps you find your strength in whatever way you may need it right now.
FIRST, AN UPDATE:
My son's journey fills these pages. Your child's story may as well.
But the best is now here, and more of the best is certainly yet to come.
Lance continues to be well. Its over a full year now that he has had any flare symptoms! A FREAKING YEAR, do you hear that?? A couple of weeks ago, he had this incredible flu bug that was going around, it ran through him like a freight train. He had a fever of nearly 103! The first fever he has ever run since he was 10 years old. He called me at work, sobbing, he thought he was dying, seriously. He had incredible chills and you know, that feeling of fever, the skin crawling that feeling. Well, he didn't know that feeling, he hasn't had a normal fever that he can recall, so he literally believed he was dying. He couldn't believe it when I said hello, this is a normal immune reaction! A fever! Wow! Then, despite all of it, not a flare, not a tic, not a nothing. He is really better. His brain is healed. His BBB is sealed. He got a fever like a normal person. Not by accident, that's for sure. The work it took is on these pages. He still takes lots of supplements but more foundational support, antioxidants, and healthy fats, lots of healthy brain-restoring fats. Phospholipids, omega 3's. Lots of B12 and active B's. Allergy stuff, probiotics. I give him Zithromax twice a week, and mostly because I'm afraid I bring germs home to him and expose him all the time to the nasty strains of PANDAS strep that children bring into my practice.
Lance just graduated high school, with a 4.3 GPA and a full scholarship to the school and program of his dreams, USC, the Annenberg School of Communications. He is a true success story. And there are others. If you are reading this and your child is devasted with PANDAS/PANS, please please please do not give up.
People are saying to me, oh you are becoming an "empty nester", you poor person, however shall you cope?? Many parents of graduating seniors are sad their child is leaving. So I keep expecting to feel this incredible wave of sadness. But I DON'T, how could I? I just feel HAL-LE-fucking-LU-JAH!!!!! OMG, I feel tremendous gratitude and relief, that he made it at all, that we made it here!! Lance is well, he going off to school as a healthy normal 18 year old. What could possibly be sad about that?? What could be better? I feel so much pride in him. I feel total awe of what he has accomplished. I feel incredibly jealous of his youth, and of the world being so freshly at his feet. He is entering this time of life so ahead of where I was when I went to college. He is so present, so emotionally intelligent, so deep and centered within himself. I feel nothing but confidence that he will thrive. I am not the least bit worried about how school or life will treat him. He got over PANDAS, he can do anything. The world will work its magic on him, and he will work his magic back, because he has integrity and self awareness, and calls forth amazing things and that is simply who he is.
I Am Coming Out.
As for me, in the not-too-distant-future I am going to have alot of personal space and I need it, desperately. I crave it, to be honest - I can't wait. Of course I will miss Lance, my sweet baby and big boy, but I need my personal renaissance and I need it now. I remember when I used to also call forth amazing things. Hmmmmm. Every now and then I sense a little glimmer of space, a memory of a geater perspective. I am so hitting the road. I am so going to the desert. I am so moving forward, I am so ready to explode out from the little world, the teeny itsy bitsy world my personal life has become.
My personal life could fit on a pinhead. There is a narrow little pathway in and out of my house, that goes very few places. Work (which I am blessed to LOVE), then a number of grocery stores are on the path. Freaking Target. A couple of coffee places. The bank. Lance's school, oh...his old school!! Oh, the gym, and Ragle Park. But that's about it. Its a very short and narrow path. Do you know I live a mere 4 hours from Yosemite and I have never once been there? A mere 20 minutes from the Russian River and I have only been in it one time...and that was a couple of weeks ago...and we have lived here for 8 years??? Seven years of hell, and now, something changing.
So I am coming out. I am becoming clear on my personal journey and I am going to share it. PANDAS moms joke all the time about our collective PTSD. But I assure you, that PTSD is no joke. The collective human toll that PANDAS has created is so beyond what you think. Not just the children, the illness, the awfulness of that. Not just the broken marriages and families. Not just the lost friends, the lost homes, the bankruptcies, the medical disenfranchisement, the isolation, the lost years of happiness. Its the soul busting, heartbreaking, psyche destroying effects that linger, beyond what can register at any given moment while you're going through it, but what I have found coming back to haunt me at a time when my happiness should have been peaking.
This is the story I am ready to tell on these pages. Lance's story is my story, and my story is his. And possibly yours. I am sending you incredible love and hope that as I tell you what I am now learning, it will help you in some way to be a better person to yourself and to forgive yourself for anything you believe you may have ever done that is not enough to help your child. You are amazing. You are human, only human, we are human and the mystery is beyond our comprehension. it will get better.
Out of a daze. Out of my Mind with a Capital M (the bad part). Out of prison. Out of silence. Out of an incredible personal crash.
I am coming out to tell the hidden story, the invisible trauma of PANDAS. The devastation of a mother's soul, and the journey back.
I've been afraid to tell this story except to a very few brave humans who have tried to hang in there with me. Its a story I must tell, I must speak the words out loud to another, for it to make any sense, but I see that the burden on those few remaining friends and family - its too great. It hurts them. My story is simply too much to bear and more than any mere mortal should have to, except myself. And I shouldn't have to either. I am sorry for the pressure I have put on anyone to listen to me, to understand me, to throw me some humanity when I got so lost these last couple of months. So, hopefully, anyone choosing to read this blog will find themselves able to stand for me, and to hold a space of light and possibility for the untold many just like me, trying to build a bridge back into the land of the living.
If you are here, reading this, you are on a PANDAS journey of some kind. Perhaps you are in PANDAS hell and desperately looking for solutions to your child's health issue. Perhaps you are struggling to hold onto a shred of personal sanity. Perhaps you are a friend or a family member trying to help, trying to understand what the heck happened to your friend and their child, or children. Where did they go? How did they fall off the ends of the earth? Perhaps you are on your own road to recovery. Perhaps you are one of the fallen, you left your family or your spouse or your friend because you couldn't handle the darkness any more and you didn't know what to do, or if you could trust them anymore. Perhaps you know me from a facebook page or perhaps, even, I take care of your child. For any of you, I hope there is something here that helps you find your strength in whatever way you may need it right now.
FIRST, AN UPDATE:
My son's journey fills these pages. Your child's story may as well.
But the best is now here, and more of the best is certainly yet to come.
Lance continues to be well. Its over a full year now that he has had any flare symptoms! A FREAKING YEAR, do you hear that?? A couple of weeks ago, he had this incredible flu bug that was going around, it ran through him like a freight train. He had a fever of nearly 103! The first fever he has ever run since he was 10 years old. He called me at work, sobbing, he thought he was dying, seriously. He had incredible chills and you know, that feeling of fever, the skin crawling that feeling. Well, he didn't know that feeling, he hasn't had a normal fever that he can recall, so he literally believed he was dying. He couldn't believe it when I said hello, this is a normal immune reaction! A fever! Wow! Then, despite all of it, not a flare, not a tic, not a nothing. He is really better. His brain is healed. His BBB is sealed. He got a fever like a normal person. Not by accident, that's for sure. The work it took is on these pages. He still takes lots of supplements but more foundational support, antioxidants, and healthy fats, lots of healthy brain-restoring fats. Phospholipids, omega 3's. Lots of B12 and active B's. Allergy stuff, probiotics. I give him Zithromax twice a week, and mostly because I'm afraid I bring germs home to him and expose him all the time to the nasty strains of PANDAS strep that children bring into my practice.
Lance just graduated high school, with a 4.3 GPA and a full scholarship to the school and program of his dreams, USC, the Annenberg School of Communications. He is a true success story. And there are others. If you are reading this and your child is devasted with PANDAS/PANS, please please please do not give up.
People are saying to me, oh you are becoming an "empty nester", you poor person, however shall you cope?? Many parents of graduating seniors are sad their child is leaving. So I keep expecting to feel this incredible wave of sadness. But I DON'T, how could I? I just feel HAL-LE-fucking-LU-JAH!!!!! OMG, I feel tremendous gratitude and relief, that he made it at all, that we made it here!! Lance is well, he going off to school as a healthy normal 18 year old. What could possibly be sad about that?? What could be better? I feel so much pride in him. I feel total awe of what he has accomplished. I feel incredibly jealous of his youth, and of the world being so freshly at his feet. He is entering this time of life so ahead of where I was when I went to college. He is so present, so emotionally intelligent, so deep and centered within himself. I feel nothing but confidence that he will thrive. I am not the least bit worried about how school or life will treat him. He got over PANDAS, he can do anything. The world will work its magic on him, and he will work his magic back, because he has integrity and self awareness, and calls forth amazing things and that is simply who he is.
I Am Coming Out.
As for me, in the not-too-distant-future I am going to have alot of personal space and I need it, desperately. I crave it, to be honest - I can't wait. Of course I will miss Lance, my sweet baby and big boy, but I need my personal renaissance and I need it now. I remember when I used to also call forth amazing things. Hmmmmm. Every now and then I sense a little glimmer of space, a memory of a geater perspective. I am so hitting the road. I am so going to the desert. I am so moving forward, I am so ready to explode out from the little world, the teeny itsy bitsy world my personal life has become.
My personal life could fit on a pinhead. There is a narrow little pathway in and out of my house, that goes very few places. Work (which I am blessed to LOVE), then a number of grocery stores are on the path. Freaking Target. A couple of coffee places. The bank. Lance's school, oh...his old school!! Oh, the gym, and Ragle Park. But that's about it. Its a very short and narrow path. Do you know I live a mere 4 hours from Yosemite and I have never once been there? A mere 20 minutes from the Russian River and I have only been in it one time...and that was a couple of weeks ago...and we have lived here for 8 years??? Seven years of hell, and now, something changing.
So I am coming out. I am becoming clear on my personal journey and I am going to share it. PANDAS moms joke all the time about our collective PTSD. But I assure you, that PTSD is no joke. The collective human toll that PANDAS has created is so beyond what you think. Not just the children, the illness, the awfulness of that. Not just the broken marriages and families. Not just the lost friends, the lost homes, the bankruptcies, the medical disenfranchisement, the isolation, the lost years of happiness. Its the soul busting, heartbreaking, psyche destroying effects that linger, beyond what can register at any given moment while you're going through it, but what I have found coming back to haunt me at a time when my happiness should have been peaking.
This is the story I am ready to tell on these pages. Lance's story is my story, and my story is his. And possibly yours. I am sending you incredible love and hope that as I tell you what I am now learning, it will help you in some way to be a better person to yourself and to forgive yourself for anything you believe you may have ever done that is not enough to help your child. You are amazing. You are human, only human, we are human and the mystery is beyond our comprehension. it will get better.
Monday, November 11, 2013
Our Collective Humanity....A Moment in Time
Ever since I left the incredible NorthEast PANS/PANDAS Conference (http://nepandasparents.com/home.html) I have been sobbing. From the moment I stepped foot in the airport. From the moment I felt even slightly separated from all of my sisters and brothers who gathered from around the universe to meet on all things PANS/PANDAS.
What is up with these tears?? With this lump in my throat and chest??
Am I crying with sheer exhaustion from simply channeling all of the incredibly intense energy that comes from a gathering of hundreds of PANDAS moms (and a very few dads) in a single room, sharing our journeys? How that hotel's roof didn't blow off, is beyond me.
Am I crying with heartbreak for all the suffering children and families that are stretched beyond capacity in so many dimensions that all i wanted to do all weekend is meet every single person and hold them and see them and be seen by them? to remind them (and myself) that we are not only in this together, but we are, after all, mere mortals on this supernatural road??
Or am I crying for myself and my own child's rough road in PANDAS land?
Am I crying with relief because there were over 100 providers at this conference, innovators and thinkers and researchers and ground floor therapy givers that can take this conversation out to new places and children and possibilities??
And presenters with their unique perspectives and also sometimes limited perspectives as they present their many possible PANDAS algorithms and try to make definitive connections that I'm afraid are still missing something and they might not realize it and then they publish something important and its wrong??????? Or right????
Am I crying because it was just so rich and incredible to rub elbows and share a moment in time with some of the most courageous and persistent and intuitive people in the world, and then there I stood in the airport and I remembered that once again, its just me??
Am I crying because my PTSD got so reactivated with pain and then, with hope? that for a moment I could accept the possibility of a future that included a real life, and then....what? What are the chances of that, really?
I reached out to two other PANDAS moms that were on their way home from the conference as well, and I was somewhat relieved to hear that they also found themselves feeling shockingly alone, and down, in that same moment. So at least I knew I wasn't just losing my mind. Our collective PTSD was simply resonating through the airwaves to an overwhelming extent. We are all feeling it.
But you know, I am sure that while I am broken, while my heart is in millions of pieces, that the future looks bright for PANDS/PANS children. But how about for me, Amy, the person? Gosh, I haven't thought about her in a very long time.
This weekend really had me wondering, what is actually left of me? Beyond PANDAS, beyond bankruptcy, beyond those years of fear, and lost dreams, and broken marriage, and isolation? As a human, as a woman?
Is there any way to take back those 7 lost years? SEVEN YEARS of my life, of my child's life, gone. No trips to the Grand Canyon. No ski holidays in Utah or Tahoe. No fun moments in the family fold. No, for us, our life was more like a trip into exile. Not really living, not real life, just time going to by, trying to get well, to keep it together. Solitary and nervewracking.
Not only is he now 17 and please please God in continued health, ready and able to embark on his own greater journey. But I look in the mirror and I am older as well. This journey has definitely aged me. Although I have to admit, I'm younger now than I was last year, and two years ago, and especially than I was 3 or 4 or 5 or 6 years ago. Because, right now, my son is better. And that, i can also see when i look in the mirror.
Can my heart heal? That's like asking, is there really a God? I have no idea. I'm so afraid that even a little crack in the armor of my heart will send me to my knees. I'm so afraid to feel the depths of what's in there, although I do believe, that in the long run, the only way through the kind of PTSD that we moms have is to do just that. In our own time, and maybe with a little help and alot of loving support, to reopen our hearts. And I'm certain that in addition to all the pain in there, there is also alot of love and joy and courage and the memory of goodness and happiness, and hope. Beauty. Self-esteem. And our trusting place. Our humanity. Tucked away in a safe place for some future moment.
The future looks bright for PANS/PANDAS children.
Let's cling to that.
Let's support the people who are in the position to make that happen.
Pandas NETWORK.org - omg Diana and Vickie, and the Board. www.pandasnetwork.org. This organization is the hub of the dialogue, the connections and the collective voice of parents.
The presenters and PANDAS providers - all of you, out there willing to sacrifice your reputation for doing the right thing. I know what that's like.
Lance's Fund - link on this page. All donations go towards treatment (IVIg) and testing (Cunningham Panel) for PANS/PANDAS children at Hill Park Medical Center.
We need to think about legislative organizing, to find the energy and the tools to articulate the needs of our children in such a way that the difference gets made through policies from the top-down.
And to heal our collective PTSD, which for the time being, serves by keeping us just disconnected enough to function every day.
So much to say. From total exhaustion, I send my love and strongest possible regards and support to all things PANDAS in the world.
Thank you to whomever may be reading this blog.
Love Amy
What is up with these tears?? With this lump in my throat and chest??
Am I crying with sheer exhaustion from simply channeling all of the incredibly intense energy that comes from a gathering of hundreds of PANDAS moms (and a very few dads) in a single room, sharing our journeys? How that hotel's roof didn't blow off, is beyond me.
Am I crying with heartbreak for all the suffering children and families that are stretched beyond capacity in so many dimensions that all i wanted to do all weekend is meet every single person and hold them and see them and be seen by them? to remind them (and myself) that we are not only in this together, but we are, after all, mere mortals on this supernatural road??
Or am I crying for myself and my own child's rough road in PANDAS land?
Am I crying with relief because there were over 100 providers at this conference, innovators and thinkers and researchers and ground floor therapy givers that can take this conversation out to new places and children and possibilities??
And presenters with their unique perspectives and also sometimes limited perspectives as they present their many possible PANDAS algorithms and try to make definitive connections that I'm afraid are still missing something and they might not realize it and then they publish something important and its wrong??????? Or right????
Am I crying because it was just so rich and incredible to rub elbows and share a moment in time with some of the most courageous and persistent and intuitive people in the world, and then there I stood in the airport and I remembered that once again, its just me??
Am I crying because my PTSD got so reactivated with pain and then, with hope? that for a moment I could accept the possibility of a future that included a real life, and then....what? What are the chances of that, really?
I reached out to two other PANDAS moms that were on their way home from the conference as well, and I was somewhat relieved to hear that they also found themselves feeling shockingly alone, and down, in that same moment. So at least I knew I wasn't just losing my mind. Our collective PTSD was simply resonating through the airwaves to an overwhelming extent. We are all feeling it.
But you know, I am sure that while I am broken, while my heart is in millions of pieces, that the future looks bright for PANDS/PANS children. But how about for me, Amy, the person? Gosh, I haven't thought about her in a very long time.
This weekend really had me wondering, what is actually left of me? Beyond PANDAS, beyond bankruptcy, beyond those years of fear, and lost dreams, and broken marriage, and isolation? As a human, as a woman?
Is there any way to take back those 7 lost years? SEVEN YEARS of my life, of my child's life, gone. No trips to the Grand Canyon. No ski holidays in Utah or Tahoe. No fun moments in the family fold. No, for us, our life was more like a trip into exile. Not really living, not real life, just time going to by, trying to get well, to keep it together. Solitary and nervewracking.
Not only is he now 17 and please please God in continued health, ready and able to embark on his own greater journey. But I look in the mirror and I am older as well. This journey has definitely aged me. Although I have to admit, I'm younger now than I was last year, and two years ago, and especially than I was 3 or 4 or 5 or 6 years ago. Because, right now, my son is better. And that, i can also see when i look in the mirror.
Can my heart heal? That's like asking, is there really a God? I have no idea. I'm so afraid that even a little crack in the armor of my heart will send me to my knees. I'm so afraid to feel the depths of what's in there, although I do believe, that in the long run, the only way through the kind of PTSD that we moms have is to do just that. In our own time, and maybe with a little help and alot of loving support, to reopen our hearts. And I'm certain that in addition to all the pain in there, there is also alot of love and joy and courage and the memory of goodness and happiness, and hope. Beauty. Self-esteem. And our trusting place. Our humanity. Tucked away in a safe place for some future moment.
The future looks bright for PANS/PANDAS children.
Let's cling to that.
Let's support the people who are in the position to make that happen.
Pandas NETWORK.org - omg Diana and Vickie, and the Board. www.pandasnetwork.org. This organization is the hub of the dialogue, the connections and the collective voice of parents.
The presenters and PANDAS providers - all of you, out there willing to sacrifice your reputation for doing the right thing. I know what that's like.
Lance's Fund - link on this page. All donations go towards treatment (IVIg) and testing (Cunningham Panel) for PANS/PANDAS children at Hill Park Medical Center.
We need to think about legislative organizing, to find the energy and the tools to articulate the needs of our children in such a way that the difference gets made through policies from the top-down.
And to heal our collective PTSD, which for the time being, serves by keeping us just disconnected enough to function every day.
So much to say. From total exhaustion, I send my love and strongest possible regards and support to all things PANDAS in the world.
Thank you to whomever may be reading this blog.
Love Amy
Sunday, September 29, 2013
The Promise of Nothing
OMG, my son is a SENIOR IN HIGH SCHOOL.
How did we get here? Well, we stumbled our way through a nightmare, and woke up and now we're here. Time, the one constant, just keeps moving along, one way or another and the journey continues.
We missed alot of the good stuff, in the last 1/2 of his life, that's for sure. The lazy, easy going weekends doing nothing special, the giggles, the family road trips, the Grand Canyon....these were not our journey.
Romantic moments, supportive loving marriage - not my journey.
Down and dirty, carefree childhood with long unfolding summers, meaningless bumps on the head and simple pleasures - not Lance's journey.
But somehow, we got here anyway.
My baby is a senior.
He's big. He drives. He has muscles. And friends.
He's the captain of the Varsity boys basketball team.
He's consumed with getting into college, like any other forward thinking senior might be.
He swallows approximately 25 pills on an average day.
He goes to an average of 6 medical appointments every month - not including normal things like, the dentist. (Oh, did I mention that none of them are covered by insurance? What a surprise...)
And he has had the most PANDAS symptom-free 4-5 month stretch we have seen since before July 7, 2006. We are 10 months post his second IVIG treatment.
I talked with my sister on the phone Saturday morning and she said, what's up? Bracing herself, knowing that Lance had been home sick half the week with some throat and respiratory infection and that the chances of it instigating a major tic flare are big. We were both surprised when I said, Nothing. Lance was fine. No flare. Of course, we added a second antibiotic and a number of Chinese herbs, swelling his total number of daily swallowed pills to something like 40. But no flare. And she said what are you doing this weekend and I said, Nothing.
HA!!!! NOTHING!!!
Oh, there is plenty to do and plenty I've done, cleaning, laundry, exercising, shopping, cooking, working on labs from home, doing the school carpool schedule. But that's it. Just normal stuff like most other American families. So Lance and I spent this lovely rainy Sunday afternoon laying on the sofa and watching the 2-hour Grey's Anatomy season premier on demand, and now he's doing some random thing. Because there is no flare and thus, Nothing pressing.
I do not take Nothing for granted. It fascinates me.
Nothing for me includes the absolute awareness that he is NOT sick at this moment, and I am not currently actively freaking out, paralyzed, terrified, crushed or frantic with worry. I'm not - at this one moment - circuitously consumed with how I'm going to heal my child, how I'm going to pay for it, and of what PANDAS is doing to his brain.
He is NOT sick. There is No flare, he's ok. This is Good. Hmmmmm.
Oh, its not like I think ok, he's better now, his PANDAS is cured, let's get on with the show. Not like, my guard is down. Its not like I believe this one glorious moment of respite will last. Although, I guess it could. It could, in fact, look just like this tomorrow. Or next week. Like Nothing.
I must admit I am constantly thinking about PANDAS, about PANDAS kids, about brains, inflammation, neurotransmitters and the blood brain barrier. I'm obsessed with leaky guts, and gluten antibodies, and autoantibodies, and lab tests, and glutamate, and the genetic patterns I'm seeing in PANDAS kids' 23andme findings. I think about loneliness, and I think about money alot. And I wonder if I'm ever going to find love again in my life, or trust the Universe, and just be happy. And I'm always, always wondering about if I'm ever going to be able to figure this out, this PANS/PANDAS thing.
But anyway, the main thing is, for this moment, that Lance and I are home on a rainy Sunday, and we are doing nothing. And I'm glad, and sleepy and grateful, for this simple moment.
Love to all my sisters and brothers out there. I wish you many simple moments.
amy
How did we get here? Well, we stumbled our way through a nightmare, and woke up and now we're here. Time, the one constant, just keeps moving along, one way or another and the journey continues.
We missed alot of the good stuff, in the last 1/2 of his life, that's for sure. The lazy, easy going weekends doing nothing special, the giggles, the family road trips, the Grand Canyon....these were not our journey.
Romantic moments, supportive loving marriage - not my journey.
Down and dirty, carefree childhood with long unfolding summers, meaningless bumps on the head and simple pleasures - not Lance's journey.
But somehow, we got here anyway.
My baby is a senior.
He's big. He drives. He has muscles. And friends.
He's the captain of the Varsity boys basketball team.
He's consumed with getting into college, like any other forward thinking senior might be.
He swallows approximately 25 pills on an average day.
He goes to an average of 6 medical appointments every month - not including normal things like, the dentist. (Oh, did I mention that none of them are covered by insurance? What a surprise...)
And he has had the most PANDAS symptom-free 4-5 month stretch we have seen since before July 7, 2006. We are 10 months post his second IVIG treatment.
I talked with my sister on the phone Saturday morning and she said, what's up? Bracing herself, knowing that Lance had been home sick half the week with some throat and respiratory infection and that the chances of it instigating a major tic flare are big. We were both surprised when I said, Nothing. Lance was fine. No flare. Of course, we added a second antibiotic and a number of Chinese herbs, swelling his total number of daily swallowed pills to something like 40. But no flare. And she said what are you doing this weekend and I said, Nothing.
HA!!!! NOTHING!!!
Oh, there is plenty to do and plenty I've done, cleaning, laundry, exercising, shopping, cooking, working on labs from home, doing the school carpool schedule. But that's it. Just normal stuff like most other American families. So Lance and I spent this lovely rainy Sunday afternoon laying on the sofa and watching the 2-hour Grey's Anatomy season premier on demand, and now he's doing some random thing. Because there is no flare and thus, Nothing pressing.
I do not take Nothing for granted. It fascinates me.
Nothing for me includes the absolute awareness that he is NOT sick at this moment, and I am not currently actively freaking out, paralyzed, terrified, crushed or frantic with worry. I'm not - at this one moment - circuitously consumed with how I'm going to heal my child, how I'm going to pay for it, and of what PANDAS is doing to his brain.
He is NOT sick. There is No flare, he's ok. This is Good. Hmmmmm.
Oh, its not like I think ok, he's better now, his PANDAS is cured, let's get on with the show. Not like, my guard is down. Its not like I believe this one glorious moment of respite will last. Although, I guess it could. It could, in fact, look just like this tomorrow. Or next week. Like Nothing.
I must admit I am constantly thinking about PANDAS, about PANDAS kids, about brains, inflammation, neurotransmitters and the blood brain barrier. I'm obsessed with leaky guts, and gluten antibodies, and autoantibodies, and lab tests, and glutamate, and the genetic patterns I'm seeing in PANDAS kids' 23andme findings. I think about loneliness, and I think about money alot. And I wonder if I'm ever going to find love again in my life, or trust the Universe, and just be happy. And I'm always, always wondering about if I'm ever going to be able to figure this out, this PANS/PANDAS thing.
But anyway, the main thing is, for this moment, that Lance and I are home on a rainy Sunday, and we are doing nothing. And I'm glad, and sleepy and grateful, for this simple moment.
Love to all my sisters and brothers out there. I wish you many simple moments.
amy
Saturday, June 1, 2013
Living with a Healthy Child - How can anyone take it for granted?
Last night, someone asked Lance if the most recent IVIg (that we did back in December) ever did anything to help his PANDAS symptoms? And for the FIRST time, he said, yes, he is better, the IVIg worked.
HE SAID YES. Straight out, YES it did, I feel better.
I feel GOOD.
OMG. He said those words.
I would never personally ask him if it helped, I try hard not to ask such things. I'm afraid he'll say no. I'm afraid the question itself will be a trigger and create another flare. So its something I tiptoe around, never quite asking but watching watching watching for signs, any kind of sign.
Are his pupils big today?
Is his ankle jerking?
Is he sighing too much? Sleeping too much? Sleeping too little? Good mood? bad mood?
Does he look pale? sick? hot? too dry? rash-y? puffy? inflamed?
Is his coordination good today? oh did he bang his foot? his head?
Do we need to see the PANDAS doctor? The therapist? The chiropractor? the postural integration specialist? the dentist? The pharmacist? The ENT guy? the Herbalist? The acupunturist?
does he need more antibiotics? Less? How about more gut support? Allergy medicine? Oils? Methylation nutrients? Myco drops, how many today? Anxiety herbs? Sleeping nutrients? Waking nutrients? Adrenal support? Did he say that cos he is 17? Or is he having anxiety due to strep? Should we have more and more and more labtests?
Endless measuring watching and waiting.
Isn't that the way it is?
I for one am trying so hard to step back, and let Lance revel in a sense of well being and how it would be for him to just be unobserved for at least a few minutes or a few hours. Or a few days. To just let him be 17 and have the FIRST healthy summer he has almost ever had, since we moved to to California in 2006.
This is what I am hoping for the rest of this year....as Lance continues to get better and stay better!!!!
1. Any semblance of normal living
2. Unusual Social phenomena a.k.a. "Fun" - that would be a change...
3. Having money left over each month NOT spent on medical care and be able to do something fun with it!
(amen to that!!!)
4. To take Lance to the east coast this summer to see my family for the first time several years - and, visit a few colleges he is interested in. AND to see some of my old friends in NY and cousins and my in-laws that I NEVER ever get to see - and haven't seen for years!!!! Did I say - YEARS???
5. To see him get into one of those colleges he is interested in - his #1 desire is Stanford - with a FULL SCHOLARSHIP (since I spent my entire lifesavings on medical care) - YES HE CAN!!!
6. To take Lance on a vacation, him and me, for the first time in so many years, a real vacation, if I can swing it, to like, a resort. Hawaii, Mexico, Florida? hey anywhere, but somewhere that feels resorty and celebratory and luxurious and like we're not constantly missing out on the life that we ever hoped to live.
7. To support as many children and families dealing with PANDAS as my human energy, cognitive capacity and time allow me, and to see many changes in how PANDAS is seen in the world. It should be
-recognized and integrated into mainstream medical care and education
-full treatment parity including manadatory adaptive education AND insurance reimbursement.
-NO child having to travel to another state or another country to find PANDAS specialist care
-NO child being pumped full of psychiatric meds for weeks or months or years when what they need is antibiotics
-NO family having to lose their homes, life savings and entire financial well being while forking out thousands and thousands of dollars every year on non-reimbursed medical care (SHAME on our country!!!)
8. Ok, dare I say it - Happiness. To feel happy again, relaxed and trusting that good things are happening. Its been a long time since I have felt like that. Even now I'm afraid to let my guard down. But I must try. Lance wants me to try, he needs to feel freed up and normal. He would give anything to see me freed up and normal - to have more of a life than I do as a very hardworking single parent doing everything I can to keep him going and us surviving.
I wish anyone looking at this page happiness, for yourself and your family.
And if you are a PANS/ PANDAS family, know that there are many sisters and brothers that support you and embrace you all over the world. We understand how small our world can feel in isolation, but you are not alone. And but I believe that our children are going to get better. If you are not a PANDAS family, and your children are healthy - please, Be Happy. There is no excuse for misery. Just know that nothing else in the entire world is worth worrying about. Make your life joyful and brilliant and focus on the normal moments, the simple moments. All of life is there for you to live as open possibility!! You are so lucky and blessed!!
Next spring, likely in April, we (with the support of PandasNetwork) will be presenting another PANDAS Parent Symposium in San Francisco, and we are working on pulling one together this fall in Boston. None of us should alone out here.
Love to all
Amy
HE SAID YES. Straight out, YES it did, I feel better.
I feel GOOD.
OMG. He said those words.
I would never personally ask him if it helped, I try hard not to ask such things. I'm afraid he'll say no. I'm afraid the question itself will be a trigger and create another flare. So its something I tiptoe around, never quite asking but watching watching watching for signs, any kind of sign.
Are his pupils big today?
Is his ankle jerking?
Is he sighing too much? Sleeping too much? Sleeping too little? Good mood? bad mood?
Does he look pale? sick? hot? too dry? rash-y? puffy? inflamed?
Is his coordination good today? oh did he bang his foot? his head?
Do we need to see the PANDAS doctor? The therapist? The chiropractor? the postural integration specialist? the dentist? The pharmacist? The ENT guy? the Herbalist? The acupunturist?
does he need more antibiotics? Less? How about more gut support? Allergy medicine? Oils? Methylation nutrients? Myco drops, how many today? Anxiety herbs? Sleeping nutrients? Waking nutrients? Adrenal support? Did he say that cos he is 17? Or is he having anxiety due to strep? Should we have more and more and more labtests?
Endless measuring watching and waiting.
Isn't that the way it is?
I for one am trying so hard to step back, and let Lance revel in a sense of well being and how it would be for him to just be unobserved for at least a few minutes or a few hours. Or a few days. To just let him be 17 and have the FIRST healthy summer he has almost ever had, since we moved to to California in 2006.
This is what I am hoping for the rest of this year....as Lance continues to get better and stay better!!!!
1. Any semblance of normal living
2. Unusual Social phenomena a.k.a. "Fun" - that would be a change...
3. Having money left over each month NOT spent on medical care and be able to do something fun with it!
(amen to that!!!)
4. To take Lance to the east coast this summer to see my family for the first time several years - and, visit a few colleges he is interested in. AND to see some of my old friends in NY and cousins and my in-laws that I NEVER ever get to see - and haven't seen for years!!!! Did I say - YEARS???
5. To see him get into one of those colleges he is interested in - his #1 desire is Stanford - with a FULL SCHOLARSHIP (since I spent my entire lifesavings on medical care) - YES HE CAN!!!
6. To take Lance on a vacation, him and me, for the first time in so many years, a real vacation, if I can swing it, to like, a resort. Hawaii, Mexico, Florida? hey anywhere, but somewhere that feels resorty and celebratory and luxurious and like we're not constantly missing out on the life that we ever hoped to live.
7. To support as many children and families dealing with PANDAS as my human energy, cognitive capacity and time allow me, and to see many changes in how PANDAS is seen in the world. It should be
-recognized and integrated into mainstream medical care and education
-full treatment parity including manadatory adaptive education AND insurance reimbursement.
-NO child having to travel to another state or another country to find PANDAS specialist care
-NO child being pumped full of psychiatric meds for weeks or months or years when what they need is antibiotics
-NO family having to lose their homes, life savings and entire financial well being while forking out thousands and thousands of dollars every year on non-reimbursed medical care (SHAME on our country!!!)
8. Ok, dare I say it - Happiness. To feel happy again, relaxed and trusting that good things are happening. Its been a long time since I have felt like that. Even now I'm afraid to let my guard down. But I must try. Lance wants me to try, he needs to feel freed up and normal. He would give anything to see me freed up and normal - to have more of a life than I do as a very hardworking single parent doing everything I can to keep him going and us surviving.
I wish anyone looking at this page happiness, for yourself and your family.
And if you are a PANS/ PANDAS family, know that there are many sisters and brothers that support you and embrace you all over the world. We understand how small our world can feel in isolation, but you are not alone. And but I believe that our children are going to get better. If you are not a PANDAS family, and your children are healthy - please, Be Happy. There is no excuse for misery. Just know that nothing else in the entire world is worth worrying about. Make your life joyful and brilliant and focus on the normal moments, the simple moments. All of life is there for you to live as open possibility!! You are so lucky and blessed!!
Next spring, likely in April, we (with the support of PandasNetwork) will be presenting another PANDAS Parent Symposium in San Francisco, and we are working on pulling one together this fall in Boston. None of us should alone out here.
Love to all
Amy
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