I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Wednesday
Dec232015

World's Best Liar

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Just call me Secret Agent Double 0 PANDAS Mama. I lurk in dark hallways, listening to breathing; I search for sharp objects capable of making cuts so I can confiscate them; I wake at the creak of a door.

I have laundry baskets filled with clean laundry piled up in my room because I haven't the time or energy to put all away yet. I have bills piled up in several areas in the house. Yet when I walk out the door, I am neatly dressed and I look ready to take on the world. Haha. Fooled you all.

I am the world's greatest liar. When someone asks how I am, I say, 'great'. I say, 'fine'.

I say, 'OK' when I'm in despair or physical pain. Those are the days that I wish I could keep my dark sunglasses on. Those are the days that when I'm in the car alone, the tears creep into my eyes. I guess I could answer with 'Horrendous,' but really, who wants to know the truth? There's nothing anyone (aside from a doctor) can do. The world is divided into A) Parents and Kids Who Suffer from Medical Disabilities--and this includes those referred to as Psychiatric) and their Medical Providers and... B) Everyone else. So I say, 'OK'. Never have I had someone say to me, "Cut the BS and tell me what's really going on, Lisa."

I am the world's greatest liar. I make lists of everything for which I am grateful and make myself believe in ONLY that for a few moments, blocking everything else out of my mind. I can fool myself for hours at a time. Yay me. Must be the acting I once did. From Marian the Librarian to Queen of the Night to...drum roll, please...tada!...PANDAS Mama!

I am the world's greatest liar. You see, I know that when I have wrinkled hands, my child will be grown up and better. Maybe not 100% better, but I'll settle for 80% at this point. I know he will be better because that's the irony of life. I'll give up all of mine now so that he will be ok. I won't stop until he is better, and that's no lie.

I am the world's greatest liar. I tell myself I'll retire someday and live in a warmer climate, that I'll miraculously have more money. I'll have time and energy to do the things I'm putting on hold now because of my children's diseases and my own (and the fact that 200% of our resources go to treatments): bicycling tours, nights out, vacations, excursions to other places, singing. 

I am the world's greatest liar because much of the time I just want to curl up on my bed and get lost in a good book. Leave me alone, world. Let me escape. I think that's what I want. But the truth is that when I'm with a good friend, I feel like myself again. And although I seem to myself to be much more introverted now, I do love my good friends. I don't like large parties. Being with large groups of people tires me out. Maybe my personality has changed. Maybe I've lost the last few remnants of humor and creativity. Am I the same person who once sang, "Shall We Dance?" to a two year old and soared with him around the room while he laughed? I don't want to dance anymore. No, that's not true. But my hip hurts all the time.

I'm the world's greatest liar because I tell myself I probably can't truly sing well anymore anyway. I'm sure I can no longer hit the high E (not that one needs to very often.) But I haven't tried. I haven't the time or the energy. And I'm not old, although I'm too old to play Mary Poppins as I'd always dreamed of doing. I made my choice--to have a family and teach and to not attempt a career in music. I should be happy, right? I have two beautiful kids and a loving, funny, dedicated husband. Too bad they're all sick. "Two paths diverged" and all that. I certainly took the road less traveled! (Robert Frost.) The Lyme Road.

I am the world's best liar because I haven't the foggiest notion of how to cut through my brain fog and complete the novel I started years ago. Yet I still tell myself I'm a writer and that I will be published--in hard cover, no less. Never mind that words don't come as easily to me as they once did.

I am the world's greatest liar when I open a bottle of red wine and tell myself I will have one cup each night, and then forget about the last three cups until either my husband uses the rest to cook with or the wine becomes bitter. I'm truthful in that I'll never be an alcoholic. No James Bond dry martinis for me. But bring me chocolate and watch it disappear. Except now. I'm dairy-free. Bummer for me, right?

I am the world's greatest liar when I think that we will have 7 years of bad luck with the Lyme and PANDAS before having 7 years of good again. It's been six years now, so that means just one more bad year, right? Might there be something biblical about this suffering? And althought I don't believe in G-d (much,) I pray when times are very bad. I certainly don't believe any G-d would cause this, but I have wondered if maybe I was Christopher Columbus or a Nazi henchman in a past life; what did I do to deserve this? What did my child do to deserve this?

"Mommy do you vow I'll get better?" he asks me sometimes. He calls me "Mommy" when he's not feeling well. I wish he would call me "Mommy" instead of "Mom" when he's feeling fine/confident/healthy.

"I vow that you'll be better," I say, looking him straight in the eye. I might be the world's greatest liar but I really don't know all the body language or how to cover up a lie; I have no poker face. But this is not a lie; I will do everything in my power to make sure my baby is better. 

He says, "If I'm not better, you'll give me one million dollars!"
"Hey," I tell him. "I'm spending one million dollars getting you better!"

OK. That is a lie. Although, considering that my husband now works sporadically so that someone is here for our son, and considering how much we have spent and gotten into debt over...you do the counting. I'll stick my head in the sand until we can breathe and maybe then I'll assess the financial damage.

I tell myself that all will work out in the end (or it's not the end.) If I have to lie to my child to keep him alive in the meantime, I will believe that lie first. And then work my butt off to make it become a truth. 

I am the world's best liar because I constantly tell myself that everything I have is enough, when it isn't! I abhor having a house that is slowly falling apart. I loathe having to cancel plans at the last moment because a child is flaring. I despise never having a date with my husband. I hate hate hate not being able to sing/dance/travel like I used to, and to do so with my kids. I want to show them the world, not the inside of a malfunctioning brain!

Yes, I can feel gratitude for the fact that we have a house and that we have kind neighbors, that we can stay home and rent a movie or escape into a book. I am grateful that I have a secure job that I love, a career that offers me a happy place and a chance to make a difference in this world. I am fortunate in that the children I teach have no conceivable idea that my family is so ill. I go to school and I smile. No one ever knows what happened last night. I am a double agent; my world at home is a secret.

I am the world's best liar when I tell my child, "This pill will work," hoping for the placebo effect, if not the real effect, to make a difference. But then the Herxheimer's reaction--all that bacteria die-off which exacerbates symptoms--kind of complicates that and shows me up. 

I am the world's greatest liar because I tell myself that there must be some meaning to all this suffering. I tell myself that I'm meant to do something with this--not dwell alone in my misery, but to teach others, help others past the hurdles we've been through, guide others through the shortcuts (have you tested yet via Igenex?!) and perhaps change someone else's life as I haven't completely done with our own. Yet.

I am the world's best liar, or perhaps the world's greatest dreamer, when I believe that in twenty, thirty, forty years time, there will be cures for Lyme, Bartonella, Babesia, and for PANDAS/PANS, so that someday, our children and parents no longer need to suffer like this. I believe that change is inevitable, that our parent movement will propel this forward, that the world will begin to listen. 

It's tiring to live the double-life. Secret Agent Double O PANDAS Mama needs a lot of rest and destressing time to be able to cope with the darkest travesties of the job. The training has been intense. But we secret agents will prevail, and someday, will retire to a happy, sunny beach. Maybe that's a lie also.

Sunday
Dec132015

It's a Small World After....

It's a small world after PANDAS/PANS and Lyme smack into the middle of your shoulder blades and then stab you in the gut. You learn who your best friends and family members are, acquaintances fall by the wayside and you make new friends through support groups. 

For a few years, around holiday time, my little family scheduled picture-taking, only to postpone when our child with PANDAS wasn't well. Had we photographed the kids at the time, you might have surmised they were starring in the worldwide wrestling arena. It helps to have a husband who is a photographer. Then again, if we'd hired an outside professional, maybe the kids would have kept it together for the photo session. As it was, we often had to bribe them. My husband prided himself on quirky creative cards that people would hesitate to throw away when February rolled around.

I loved our kitchen in December and January. Every card we received would be taped to one of our ancient wooden kitchen cabinets. I'd be surrounded by smiling faces and wishes for joy.

Last year, however, the PANDAS, etc. worsened. My husband spent his creative energy soothing a kid who was herxing from Bartonella medication. Hence, no pictures were taken, no cards sent.

I suppose I could have created a card detailing the effects of PANDAS and Lyme on a family. Or a card with simply the words: PANSLife.com. Not that I had the energy to send them out anyway. Lyme had sent me reeling.

But the cards came in and lined the outside of my kitchen cabinets, lifting my mood. I loved seeing the faces of children I had known since they were small. Although many of these people were friends from the past, many had no idea that life for us had changed dramatically. I don't include letters with my cards, documenting the year, telling about everyone's life.

Can you imagine if I did that? "2015 was a horrendous year. My son, who had started out in school (yes, he was BACK to school after being homebound for two years,) made Honor Roll, joined the track team and the Student Council. Despite all this, his co-infections caught up to him. As you may or may not know, he has trouble detoxing--he has two MTHFR mutations--and the 23andMe confirmed this--so we have never fully treated the Bartonella and Babesia.... My daughter, on the other hand, experienced an onrush of Lyme symptoms, while I battled fatigue and joint pain...." 

Yeah, right. Like anyone wants to know. I may as well send out a letter written in a foreign language. And none of this is new. It's been the same story for about six years now. Give or take a diagnosis or two.

It's a new holiday season and thus far we've received only a couple of cards. One from my cousin, who truly cares. Apparently because we stopped sending cards, people have dropped us from their mailing list. Perhaps they think we dropped them from ours. They don't realize that they're still in our hearts, our thoughts. We haven't kept in touch except for holiday cards; years of dealing with a chronic illness will do that to a family. But how would they know? We don't see many people, don't make too many plans. Come to think of it, we're not invited to many parties anymore. Not after cancelling a few at the last minute because of a flaring child who couldn't be left alone or with a babysitter.

Then again, I'm not very good at asking others for help. I might tell people about Lyme Disease, but I rarely ask someone to take care of a child or to drive. And I can't ask anyone to help with meals--that simply is not done (plus, we're Kosher, often organic, gluten free and I'm now dairy, oat, agave, pecan, coffee and pepper-free as well.) We're 'Complicated.'

So, yes, my world has become smaller. My good friends, the ones who have stuck around, have become diamonds. My inlaws, my dad and stepmother have all stood by us. We appreciate everyone we have in our corner. I acknowledge that my own Lyme and my PTSD over the family's ailments may have created a wedge between "ordinary folks" and me. When I speak with a person who has a regular life, I seldom have much to say that isn't centered around PANDAS and Lyme. My good friends put up with me, encourage me, and then I can go on and laugh, enjoy myself, be myself, celebrate being with them. They understand that there's an underlying sadness that pervades our lives, our days. They also can help us rise above that. As can parents in the online support groups, who with a word or two, can convey so much love and acceptance. But to share the events that unfold at home with people who do not deal with Lyme and PANDAS? I don't even blog about the specifics. People would judge.

While my world within our town, our local community has shrunk, my outside world has expanded. I am in touch with wonderful people in all different states and countries. The Lyme Disease Challenge has put many of us in touch with people from all over the world, because Lyme is...well, it's everywhere. And it continues to spread. And where there's Lyme, there is going to be some PANS.

I guess I'm saving money on stamps, saving time addressing envelopes. I do miss having a picture of my two children, though, and we haven't any good ones of them together this year. Despite the hardships, there are memories I want to keep. There are friends I treasure also. Because they reach out, keeping us from isolation, they remain in our world. And when times are better, I try to reach out and remain in theirs.

 

"It's a world of laughter, a world of tears
It's a world of hopes and a world of fears
There's so much that we share that it's time we're aware
It's a small world after all."


Read more:  Disney - It's A Small World Lyrics | MetroLyrics 

Saturday
Nov282015

When All Goes Splat!: on spirituality & challenges

When All Goes Splat: On Spirituality & Challenges

Yes, that's our dining room chair that has gone splat. A perfect metaphor for our family on some days. We have taken yet one more hit; my husband isn't well. He's the one who keeps it all together, who makes sure that food is on the table, who works from home and is therefore here when someone needs him (or cannot go to school) while I escape the house and work elsewhere. It's been over six years since my son first became ill. I look around and see suffering everywhere--from Syrians fleeing ISIS to Israelis getting stabbed on their own streets, to my PANDAS/Lyme mom friends who are fighting daily for their children's lives. And I wonder--why? Why us? What's it all for?

One of my best friends asked me if I pray. She believes in prayer and she told me about a baby with a brain tumor who was kissed by the Pope when he recently visited the USA. The tumor has nearly been eradicated. Although we are of different religions, we share ideals and beliefs. I have prayed, both to G-d and to my grandmothers who loved me tremendously and would do anything they could to help me. If they could. I guess they can't. Why aren't prayers answered? Is anybody out there?

Then again, maybe some higher power has kept my son alive. Maybe these powers have helped him improve enough to attend school again and earn decent grades despite his everyday challenges. Maybe they have helped him keep the sense of humor he inherited from his dad. Maybe the glass is half full. 

I don't know if I believe in G-d, but when times are very distressed, I succumb to praying. I do believe that there is an underlying energy, some unknown power, and I do believe in science--and the fact that there are still worlds of information that we don't yet understand. I believe in the power of a community to support one another emotionally during a crisis. I don't necessarily believe in miracles. I don't believe that our time here is what it's all about, that we live, die and are buried--end of story. I don't believe that our kids should commit suicide. But I do believe in death with dignity, as in the case of Brittany Maynard, who took her own life before a brain tumor could. I think we have souls. 

I'll never forget the play, Waiting for Godot. I read it in high school when I was incredibly young, sheltered and niave despite my parents' pending divorce. When I learned about existentialism, I felt bereft, suddenly alone, apart from everyone else. I had always felt different from others, always felt that I had an unknown-to-me meaning in life, but I wasn't ready to be alone in my own world. As Jews, we wait for the Messiah. Will we always be waiting for something better?

When I was in college, studying psychology, I took a class in which we learned about out-of-the-body experiences and near-death experiences. Although these ideas frightened me, they also were affirming. I refused to read the instruction manual for I feared that it would lead to such an out-of-control experience! But this knowledge did create a belief in me that our souls were linked to our physical bodies...and that someday, our souls would survive even though our bodies did not.

I still question the purpose of suffering in our own world. My dog has a happier life. He's fed, given water, a bed, love, heat in the winter, cool air in the summer, toys, more love. It's so much harder to be human.

Years ago, when I was reading a great deal about the Holocaust, I wondered where G-d had been during all this time. I recall reading a line that stated that if we stopped believing in G-d because of the Holocaust, then we had permitted Hitler to win. I won't let him win, but I also don't believe in an all-powerful G-d who watches out for each one of us. I don't believe in a vengeful G-d. In fact, I don't know that an all powerful G-d would actually have anger at all. But sadness? 

Perhaps I am doing it all wrong? I can learn from Victor Frankl, who wrote in Man's Search for Meaning, "When we are no longer able to change a situation, we are challenged to change ourselves.” 

He also writes that, “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” 

As much as I love my family members, I cannot allow myself to be brought down by the trials that plague us. I can learn from Buddhism if I make the time and effort. I can accept that pain is in our lives and stop fighting and questioning it. I can lead the best moral life possible and support others, meanwhile, finding happinesses along the way. I can release the leashes that bind me to yesterday and the webs that glue me to worries about tomorrow. I can enjoy each and every hug, the compliments for a dinner made (they don't always like what I cook,) my 14-year old calling me "Mommy" instead of "Mom," my 12 year old wanting me to lie down next to her and talk before she falls asleep. I must choose to live in the moment (while making plans to help my family) in the future.

Today, my walking buddy said that she had once read that perhaps suffering is the element that helps us to survive. If we're dealing with a Survival of the Fittest, it will be the people who suffer and make it through who endure. When she teaches her religion class or when her own children complain that something isn't fair, she shares with her students that all "have their own cross to bear." Despite different religions, we all search for meanings from our suffering. 

So, how does that translate to today--to me, to my family? Yes, times are rough but we do have family members who support us in a multitude of ways. We have friends who are gems. We have quiet moments and love despite the challenges. Perhaps we will never heal everyone. Perhaps we won't come out of our enormous financial debts. Perhaps I won't be able to afford to repair the once glorious dining room chairs that are breaking, one by one. But for this one moment, while I write away, my family is content, and I savor the tranquility. Don't remember, don't think ahead. Savor the moment. 

And then figure out what else we can do to get back on track!

 

Tuesday
Nov102015

Kids & Consequences

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Yesterday, my 12 year old told me that I was annoying her. So, I made sure that she wasn't a liar in addition to being a brat. I'm sure I annoyed her greatly by relieving her of her phone for the day. 

Weird, I thought. Earlier, the same day, she pulled the same crap on her dad, and lost another privilege for a period of time. She wouldn't even back down when warned.

As I thought about it, my mind circled back to the night before when her sibling cursed and said hateful things in the midst of a PANDAS or Bartonella rage. That drama was much more traumatic for everyone. Yet that child was not punished.

Perhaps my youngest was checking her own boundaries with us. She actually didn't seem that upset when I removed her phone. In fact, several years ago, she said to me, "Mommy, so-and-so's parents never punish them. I don't think they love them enough." Even at that age, she knew she needed parent-defined limits. 

When my son first became ill--even before the PANDAS struck, we could not understand why consequences didn't deter him. We took toys away, canceled a day trip--nothing we did helped. Fortunately, we didn't (and don't) believe in spanking. We also tried reward charts, stars, prizes. Nothing worked. Within a moment, he would spiral into an unreachable world. A place where consequences and rewards meant zilch. Later, sometimes, remorse would follow. At that point, punishments seemed harsh, especially as his mood became more depressed and confused.

But how do you handle a child whose brain is malfunctioning? As behavior ranging from rude to atrocious manifests, their siblings gape, wondering how far this child can go without being given some kind of punishment. 

There have been times that our oldest child took everything out of his closet and drawers, in effect destroying his room, and then was incapable of cleaning up after himself. Putting everything away would have been a natural consequence but that became MY own unjust punishment. Because he was in no shape to even help beyond picking up a shirt or two.

Then again, I tell myself, he is better than some kids suffering from PANDAS and/or Lyme. He is a gentle person. He hasn't attacked his sister or his parents. He hasn't broken TVs or computers, as some children and young adults have done. He empties folded laundry baskets and turns over chairs--gently. 

All this shows that he can retain some control when in a rage, though! If he has that much control, why bother trying to destroy something? He doesn't understand it himself, when contemplated in a more lucid state.

We also wonder how much is manipulative. While there are certainly times when his brain is out-of-control, he can rein it back in a jiffy if a friend comes over. When asked to carry laundry baskets or wash some dishes, he suddenly has joint pain. Could it be that he's learned how to play his own game? We mustn't push him, mustn't stress him or we will cause an exacerbation of his PANDAS symptoms. How much of this is real and how much of this is manufactured for his own short-term benefit? We need a bullsh*t meter.

Then again, perhaps we are simply burned out after a long-term flare. When he was in a better place, he was much more helpful and could begin to handle more stress (i.e. chores.) Despite the difficulty in treating Lyme lately, he is earning and maintaining high grades. Do we look at this in a positive light--he's able to keep it together at school now? Or is this one more teenage trick?

Parents of children and teens with PANDAS agonize over these issues daily; there is even a Facebook closed support group for parents of kids who act out at home yet not at school. It's when our children are even more ill that the symptoms spill out at school. 

The rest of the world has no idea what we parents endure daily, hourly. Years of drama, tears, threats of hurting oneself and cries of not wanting to live become a grating part of our lives. Yet none of this will ever feel normal.

Normal is a young tween testing her limits. Normal is a tween texting me to see if she and friends can drive with a 17 year old I've never met, trusting that I will say no because she doesn't want to say no herself. Normal is taking away someone's phone for a day and having that child actually calm down!

I'm waiting for Normal. I wonder how long I'll be sitting here.

Sunday
Oct252015

Just Keep Swimming

What a whirlwind of a weekend...or, it should have been. My birthday was Friday and after a fiasco last year, when my Lyme doctor "fired" me because I wasn't showing enough improvement (or so he said; I think I wasn't buying enough supplements from him,) I swore I would not make another doctor appointment on my birthday. 

I had two appointments on my birthday. Instead of bringing donuts to my class, I stayed home from work and my husband drove me around to doctors. I canceled/ postponed all birthday plans.

But my experience this year pales in comparison to one FB friend who suddenly lost his 20-something son this weekend. I've been following his postings, as he flew to his son's college. Lying on my bed, reading the outpouring of love flowing through messages for his family, I am filled with such sadness for him. As far as I knew (which was little,) he had a gorgeous, happy, successful family. This was not supposed to happen. For most of us (and perhaps for this friend as well,) this came as a total surprise.

I spoke with another friend this weekend, a PANDAS/Lyme mom. Both of us, as well as many others, have become too accustomed to fighting for our children's lives. I pray that my child grows up, happy, and does not decide to end life, as has been threatened. "I don't want to live anymore" is a way too-common PANDAS refrain. And every month, we see postings of adult Lyme victims who have taken their own lives.

This crazy Lyme experience wasn't supposed to happen either. We were supposed to have healthy, bright children, not kids who would be fighting their way to survive. I only hope that the child of mine who has PANDAS and Lyme can attend college, can master the symptoms and anxieties brought about by these conditions. I do worry at times that he won't make it. 

Meanwhile, other friends cheerfully ran a half-marathon this weekend. Pictures of smiling faces and postings of "Congratulations" highlight their FB walls. They deserve it; they've had their own struggles. Who hasn't?

If I drew a VENN diagram, where characteristics of our lives were contrasted, the unifying trait would be love and the endurance to prevail. None of us are giving up. We're all fighting for something, and with support, we will hopefully all make it.

I've been looking at the four walls of my bedroom for the last three days, but the fall foliage is glorious with its fire-reds and golden yellows; the trees parade their leaves as if rejoicing with pride.

And so our world goes on...a death, a marathon, my own child "disappointed" because I'm sick and not my usual self. He doesn't even remember my real usual self. My real usual self wasn't obsessed with kids taking their medicines on time, with planning for strenuous CSE meetings, with dodging dizziness and fatigue and no longer caring that my bedroom is a mess. My own real self was dancing with my children in my arms, singing, "Shall We Dance?" from The King and I. My own real self loved planning parties and having friends over. My own real self would be bicycling, rollerblading and playing guitar in the same day. 

My real self has grown more serious. What can I say? This is our new reality. Having an ill child will change your world. Being sick and in pain stinks in every way, but my physical pain, as much as I likened it this weekend to pure torture, has been nothing in comparison to the pain of the parents who must bury their child.

I make my gratitude lists. My friends and in-laws will wait to celebrate with me another day. My husband has been taking care of us all, despite being ill himself. My daughter has been happier this year than she has in a very long time. My son is better than he was three years ago. My dog is always happy to see me, even if I left the house for five minutes. (Yeah, he's a little like Dory from Finding Nemo in that way.)

We run our own marathon with PANDAS and Lyme. Many of us parents of chronically ill children are suffering from stress and weakened immune systems. Our journeys might not end with with happily-ever-afters. But we're still striving.

"Just keep swimming."

Note: Image borrowed from http://www.olivinthelife.com/uploads/5/3/2/8/53288721/5266301_orig.jpg.

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