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
Monday, November 11, 2013
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.
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