"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
Saturday, June 14, 2014
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
Saturday, January 12, 2013
2013 and Here We Are
Tomorrow, it will be exactly 6 years 6 months and 6 days since Lance's breakthrough flare into the PANDAS world - those now famous (in our family) and horrific words - "My ankle is BUGGING me".
Ugh. And what a ride its been.
And how many very special people I have met as a result of Lance's illness - a world full - bursting even - of PANS/PANDAS moms.
PANDAS moms people my world where my friends used to be.
Last week, someone on the PANS/PANDAS facebook page posted something like this - I have to write a book, because I could never make this stuff up.
That is so true, and its just so alienating for many of us PANDAS parents, from the rest of the local human race who seem just so normal, and happy even. Or if they're miserable, they are miserable by choice. Because their child is healthy, so how dare they complain about anything else??
I swear, if my son just is healthy, I will never dare to be unhappy about stupid crap ever again.
The longing for just normal, is so intense. I could never make this stuff up.
To just, leave the house for a few days and go and be somewhere pretty, with fresh air and open skies. The longing.
To just, have a few dollars in my pocket to buy a pair of earrings or go to the (fill in the blank) instead of spending it on appointments and supplements. arggh. The longing.
To go have a martini in a nice place and actually put some makeup on, and go with someone who knows nothing at all about PANDAS, and talk all night about other things!
To make a single plan to do just about anything, in advance. And have it turn out.
To have the energy or even care enough to do one of my favorite things- get up at the crack of dawn and drive the 20 minutes to the ocean to watch the sunrise on the beach piled up in warm cozy blankets with a mug of hot coffee. Last time I got to the ocean? 4 months ago? Five? I think I went twice in all of 2012 - I live 20 minutes MAX from the coast.
To do something to just get over the social isolation and the loneliness of being a single parent, with a PANDAS child, living in a very small town in Northern California on the opposite side of the country from our family.
ouch. ouchie.
OK, its out of my system again, so let's look on the bright side of things.
Lance is, I believe, turning a corner. He has been........ sshhhhhh.....happy and relaxed.....for approximately 48 hours. He denies it - says its because his school basketball team played well yesterday. Ha! He hasn't been able to find a shred of happiness within himself, for any reason at all, for quite a number of months. I have to wonder....
We are exactly one month and 3 days post IVIG number 2.
Is it kicking in?
We shall see.
Best of luck to all of my PANS/PANDAS sisters out there, and PANDAS children everywhere.
Ugh. And what a ride its been.
And how many very special people I have met as a result of Lance's illness - a world full - bursting even - of PANS/PANDAS moms.
PANDAS moms people my world where my friends used to be.
Last week, someone on the PANS/PANDAS facebook page posted something like this - I have to write a book, because I could never make this stuff up.
That is so true, and its just so alienating for many of us PANDAS parents, from the rest of the local human race who seem just so normal, and happy even. Or if they're miserable, they are miserable by choice. Because their child is healthy, so how dare they complain about anything else??
I swear, if my son just is healthy, I will never dare to be unhappy about stupid crap ever again.
The longing for just normal, is so intense. I could never make this stuff up.
To just, leave the house for a few days and go and be somewhere pretty, with fresh air and open skies. The longing.
To just, have a few dollars in my pocket to buy a pair of earrings or go to the (fill in the blank) instead of spending it on appointments and supplements. arggh. The longing.
To go have a martini in a nice place and actually put some makeup on, and go with someone who knows nothing at all about PANDAS, and talk all night about other things!
To make a single plan to do just about anything, in advance. And have it turn out.
To have the energy or even care enough to do one of my favorite things- get up at the crack of dawn and drive the 20 minutes to the ocean to watch the sunrise on the beach piled up in warm cozy blankets with a mug of hot coffee. Last time I got to the ocean? 4 months ago? Five? I think I went twice in all of 2012 - I live 20 minutes MAX from the coast.
To do something to just get over the social isolation and the loneliness of being a single parent, with a PANDAS child, living in a very small town in Northern California on the opposite side of the country from our family.
ouch. ouchie.
OK, its out of my system again, so let's look on the bright side of things.
Lance is, I believe, turning a corner. He has been........ sshhhhhh.....happy and relaxed.....for approximately 48 hours. He denies it - says its because his school basketball team played well yesterday. Ha! He hasn't been able to find a shred of happiness within himself, for any reason at all, for quite a number of months. I have to wonder....
We are exactly one month and 3 days post IVIG number 2.
Is it kicking in?
We shall see.
Best of luck to all of my PANS/PANDAS sisters out there, and PANDAS children everywhere.
Sunday, December 9, 2012
We Made It - Again - Another Community Effort
Here we are, halfway through Lance's second IVIg!!!
We made it and we are so grateful, I am so filled with gratitude and appreciation.
I am doing the transfusion myself, here at home, on my own child; I am doing the nursing and medical care. Because I CAN. It is saving us a couple thousand $$ in infusion costs for me to do it myself. I don't doubt that any mom that had to do this, would do it in a heartbeat if they could, if it would help their child. I am blessed.
A total of 100 grams of Gammunex, 35 of which were donated by a loving PANDAS mom whose own child struggles for stability. Seven grams I had in my office as a compilation of donations here and there to our PANDAS treatment program, and I've been giving them away to parents that need it, and I just thought - hey, we need it!!
Another $1000 was donated by Diana and Don Pohlman out of the goodness of their hearts. Diana is the head of pandasnetwork, THE foundational thinktank and voice for PANS/PANDAS awareness, provider collaboration and parent education / advocacy. Thank you to Diana who has given countless life force to this brilliant effort for years despite and because of her own family's struggle with this illness.
The rest we have been able to pull together. During the infusion yesterday, which was scary at first - now I'm more confident about today - our very dear and special friend Sue who is Lance's other godmother and also watched him be born - spent the entire day with us just to be here so we feel safe. Thank you so much!! Sue is a bit of an enigma - fierce and fragile all at the same time; a warrior who is dedicated to bringing awareness to this earth about balance and using the earth and inner Guide for healing and transformation. A beautiful loving woman.
And, our dear friend Ana who has shown up as an honorary godmother in our lives, has been feeding us and watching out for me and for Lance and warming his feet and taking care of us with oils and hydration and nourishment and goodness, along with her beautiful partner Chris. I don't know how to thank them for their kindness and love.
But wait - there's more!!!
Lance's school community, Sonoma Academy, that has been so foundational to our world and Lance's incredible success and development as a student and athlete and overall individual - has been showering us with food and love and calls and community.
The PANS / PANDAS network of MOTHERS - who knows where I would be without them? Who knows where we would be without each other??
Hill Park Medical Center - Sunjya, Brian, Jen, Denise, Justin, Josh AND all the office staff who love Lance and me and support and care for us - OMG, we'd be in a psych ward somewhere without you. Literally. Lance WOULD be in a psych ward along with the perhaps hundreds of other mis-diagnosed PANS/PANDAS children who are smothered with psych meds and therapies instead of antibiotics, anti-inflammatories and IVIg.
And my local community of Sebastopol moms and families, and the dhyana Center practitioners, without whom we would have never had Lance's first treatment, and especially Carolyn, Joelle and Judy - THANK YOU again for all you did to create and pull off that incredible breakthough fundraising event, hard to believe its been two years since then! And Louie, who will run over here at any hour of the day or night to help us with anything that ever comes up.
Last but never least - my dearest Sisters, Family and Friends who listen day in and day out to me whine, freakout and celebrate over Lance's illness, our family struggle and personal ups and downs. BRAVO, thank you for hanging in there and for being so generous with your humanity. And to family members who have come and gone, I feel the presence of my parents, my step-mom, and my grandparents, all of whom would have done anything to support us and be here for Lance, and we miss them.
And now, we're off to Day 2 of IVIg.
p.s. one thing I've learned and would like to pass on is to warm the saline just a bit before the infusion - its a lot of hydration and the liquid is cold at room temperature, especially for children!!!
We made it and we are so grateful, I am so filled with gratitude and appreciation.
I am doing the transfusion myself, here at home, on my own child; I am doing the nursing and medical care. Because I CAN. It is saving us a couple thousand $$ in infusion costs for me to do it myself. I don't doubt that any mom that had to do this, would do it in a heartbeat if they could, if it would help their child. I am blessed.
A total of 100 grams of Gammunex, 35 of which were donated by a loving PANDAS mom whose own child struggles for stability. Seven grams I had in my office as a compilation of donations here and there to our PANDAS treatment program, and I've been giving them away to parents that need it, and I just thought - hey, we need it!!
Another $1000 was donated by Diana and Don Pohlman out of the goodness of their hearts. Diana is the head of pandasnetwork, THE foundational thinktank and voice for PANS/PANDAS awareness, provider collaboration and parent education / advocacy. Thank you to Diana who has given countless life force to this brilliant effort for years despite and because of her own family's struggle with this illness.
The rest we have been able to pull together. During the infusion yesterday, which was scary at first - now I'm more confident about today - our very dear and special friend Sue who is Lance's other godmother and also watched him be born - spent the entire day with us just to be here so we feel safe. Thank you so much!! Sue is a bit of an enigma - fierce and fragile all at the same time; a warrior who is dedicated to bringing awareness to this earth about balance and using the earth and inner Guide for healing and transformation. A beautiful loving woman.
And, our dear friend Ana who has shown up as an honorary godmother in our lives, has been feeding us and watching out for me and for Lance and warming his feet and taking care of us with oils and hydration and nourishment and goodness, along with her beautiful partner Chris. I don't know how to thank them for their kindness and love.
But wait - there's more!!!
Lance's school community, Sonoma Academy, that has been so foundational to our world and Lance's incredible success and development as a student and athlete and overall individual - has been showering us with food and love and calls and community.
The PANS / PANDAS network of MOTHERS - who knows where I would be without them? Who knows where we would be without each other??
Hill Park Medical Center - Sunjya, Brian, Jen, Denise, Justin, Josh AND all the office staff who love Lance and me and support and care for us - OMG, we'd be in a psych ward somewhere without you. Literally. Lance WOULD be in a psych ward along with the perhaps hundreds of other mis-diagnosed PANS/PANDAS children who are smothered with psych meds and therapies instead of antibiotics, anti-inflammatories and IVIg.
And my local community of Sebastopol moms and families, and the dhyana Center practitioners, without whom we would have never had Lance's first treatment, and especially Carolyn, Joelle and Judy - THANK YOU again for all you did to create and pull off that incredible breakthough fundraising event, hard to believe its been two years since then! And Louie, who will run over here at any hour of the day or night to help us with anything that ever comes up.
Last but never least - my dearest Sisters, Family and Friends who listen day in and day out to me whine, freakout and celebrate over Lance's illness, our family struggle and personal ups and downs. BRAVO, thank you for hanging in there and for being so generous with your humanity. And to family members who have come and gone, I feel the presence of my parents, my step-mom, and my grandparents, all of whom would have done anything to support us and be here for Lance, and we miss them.
And now, we're off to Day 2 of IVIg.
p.s. one thing I've learned and would like to pass on is to warm the saline just a bit before the infusion - its a lot of hydration and the liquid is cold at room temperature, especially for children!!!
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