Musings

 

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 the 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

Adult Blog Index

 

You are my 'son' shine 

my little 'son' shine;

you make me happy when skies are grey

You'll never know dear,

how much I love you

please don't take my 'son' shine away

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by Coby, age 11

Friday
Sep262014

Fun with Dick and Jane

DEDICATION

I dedicate this to all my sister and brother PANDAS-moms and -dads out there.

INTRODUCTION

I get by with a little help from my friends. Truly, I can't imagine where I'd be without a few very special sister PANDAS-moms. We're always there for one another, and we also make each other laugh. 

We were messaging back and forth one night, not too long ago, and somehow, lit upon the idea of writing a Dick and Jane PANDAS tale. Without one alcoholic drink between us but with probably a half dozen antibiotics running through our systems collectively (for Lyme Disease,) we let it all fly out. Here are those silly results. Not for the novice, not for a child, only for someone who wants to take a step back and laugh PANDAS in the face. (Note: the other authors of this choose to be known as Anonymous.)

DICK AND JANE READER

See Dick. Dick has PANDAS. See Jane. Jane has PANDAS. Sick Dick and sick Jane. Poor Dick. Poor Jane. Poor Mother. Poor Father. Poor Spot. Poor Puff.









 Poor baby Sally. Who might someday have PANDAS also.            

See Dick tic. Tic, Dick, tic.

Hear Jane tic. Tic, Jane, tic.

See Dick kick. See Dick kick Puff. See Puff run.

See Jane scream! Scream, Jane, scream. Jane screams at Dick.

See Jane obsess. Obsess, Jane, Obsess.









 Obsess. Obsess! OBSESS!

See Dick break things. Break, Dick, break. See Dick smash the TV. See Dick bust through his door.

See Mother take Dick and Jane to the doctor. Do you know what Munchausen's means?

See Mother drink. Drink, Mother, drink.

See Mother Facebook. Facebook, Mother, Facebook!     

See Jane’s teacher scratch. Jane’s teacher scratches her head. Jane’s teacher says Jane does not tic. Jane does not break things. Jane gets wrong answers on math problems. Jane should be more careful with her handwriting.

See Dick’s teacher scratch. Dick’s teacher scratches his head. Dick’s teacher says that Dick calls out. Dick's teacher says he puts Dick in the corner.

Hear Mother say no one puts Dick in the corner. Dick is sick. Can’t you see Dick tic? If you can't see that Dick is sick, you are a dick.

See Father frown. Watch Father write a letter to the school district. Watch Father and Mother hire an advocate and an attorney.

See relatives sneer. Sneer, relatives, sneer. They smirk and say that Mother and Father are not good parents to Dick and Jane. The relatives could do better with Dick and Jane. They would give them a good smack to their bottoms. 

Hear Dick’s father yell. Yell, Father, yell! See Dick hide. Hear Mother yell. Mother yells at Father. Father yells at Mother. Dick yells at everyone.

See Dick cry. Hear Dick wish for different parents. Hear Dick wish to die. Don’t die, Dick, don’t die.

Hear Dick’s grandmother accuse Dick’s father of being a dick.

See Dick bite his nails. Bite, Dick, bite. See Dick bite his fingernails. See Dick bite his toenails. Dick doesn’t need a scissor or nail file anymore!

See Jane pull her hair. Don’t pull, Jane, don’t pull. See Jane with hair wrapped around her finger. See Jane's finger. It is turning blue.

See Jane’s friends. Jane has three friends.
Jane has two friends.
Jane has one friend.
Jane has no friends.
You can’t see Jane’s friends. They disappeared.

See Dick write. Dick can't write. See Dick add. Dick can't add. See Dick pee. Dick CAN pee. Everywhere. See Dick pee everywhere.

See Jane eat.  Jane can't eat. Eat, Jane eat. Eat more food, Jane. Jane needs food. Jane will not eat. Jane eats air. See skinny Jane. See weak Jane. See Jane who cannot eat.

See Doctor scratch his head. Scratch, Doctor, scratch. Hear Doctor say mental disease. Hear Doctor tell parents they must have mental disease running in their family and that Mother and Father must be depressed. Hear Doctor say that Dick and Jane are sick because Mother and Father are sad.

Hear Doctor say, “Disturbed children. They need pysch meds.” Hear Doctor mention, "Hospital."

Hear Dick say, “What are psych meds?”

Hear Mother say, "Doctor, you don't know Dick!"

Hear Father yell, “Look at the medical bills! We're paying all our money to stupid Doctors!"

Hear Jane scream. Jane screams every night. Hear Jane cry. Hear Jane say she is sorry. Hear her say she is sorry again. And sorry again. Sorry. Sorry. Sorry. Sorry.

Hear Dick ask if the melatonin is mint. Is it mint? Is it mint? Is it mint? Every night, Dick will ask if the melatonin is mint.

See Father want to get frisky. See Jane sleeping in Father’s and Mother's bed. See Father turn around and go to sleep in Jane’s bed. Poor Father. Poor, poor Father. Poor Mother. Poor, poor Mother.

See Dick sleep. Dick cannot sleep. See Mother sleep. See Dick wake up Mother. See Dick sleep. Mother cannot sleep.

See Jane hit Dick. Jane, do not hit Dick!

See Spot run. See Spot make a spot on the rug because he's stressed that Dick is sick.

Hear Jane say, spot? Spot made a  spot? Out, damn spot! Out, damn spot!

See Dick pee on the spot.

See Mother buy Nature’s Miracle. See Father try to invest in Nature’s Miracle’s stock. Father can’t invest in Nature’s Miracle’s stock. All Father’s and Mother’s money has gone to the Doctor. Hear Father yell.

See Mother finally throw out the rug.

Run, Jane, run! See Jane run. See Dick run. See Jane run faster and then beat the living day lights out of Dick. See Mother hold Dick. See Father hold Jane.

See Mother find a PANDAS Doctor.

Hear the PANDAS Doctor say that Dick and Jane can get better. Hear the PANDAS Doctor say that they have a medical disease. Hear the Doctor say that Dick and Jane will take pills.

Hear Mother and Father sigh and cry.

Hear Mother say, “At least the media is telling our stories….”

Hear Father say, “No one is telling our story, Mother. It’s just you and me, Mother, and our PANDAS doctor. We will help Dick and Jane.”

Hear Dick ask, “Are the pills mint? Are the pills mint?”

*****

Sunday
Sep212014

Take Two

There's no better feeling than seeing my son all dressed up in a suit and tie, mingling with his friends of all ethnicities and religions, all of whom are on their way to a peer's bar Mitzvah. And then there's that math test he came home with the other day--the 104--which had me beaming for days. One year ago, two years ago, three years ago, four years ago -- he couldn't do any of this. He has shown such improvement from PANDAS and Lyme. Not that he's without symptoms, I always feel I must add. He's still getting IVIG and he's still on antibiotics and supplements. 

If his growth is an upward curve (after plummeting nearly to suicidal levels,) my daughter's is a slow decline. At first, we attributed her behaviors to current and post-traumatic stress (her brother) and a need for more attention. She was only 6-1/2 when her brother, two years older, became not only sick but suffered an extreme personality change.

When we discovered that she also has Lyme Disease, Bartonella, Babesia (courtesy of me and my childhood playing in CT woods,) we opted to strengthen her immune system and not attack these dormant diseases. But--guess what? They weren't so dormant after all. Now, in her tween years, the symptoms are emerging more and more. She's able to keep it together for school. She stresses over PE because of her air hunger, but she's playing in an AYSO soccer team on the weekends and she participated in a lacrosse camp this past summer. She doesn't like bicycle riding at all. I think that's my fault for letting her do a 14-mile ride and tiring her out. Major bummer. 

I try not to worry about the future. We can point to our son and say, "Look how well he's doing! If you do everything you need to do, you'll feel much better." Even so, I had to take away her iPAD today until she'd succumb to eating something "terrible" that we had in the house (because "we have no good food") so that she could take her antibiotics.

We have requested a 504 from the school district--she's in MY school now--and so far, they're very accommodating about testing her. I'm not used to this--a school district that actually suggests adding another evaluation. I almost feel guilty in some ways. When I took her to my school for (no fee--a privilege accorded to district employees in a district with one of the highest rated high schools in the country,) I believed her to be the well child who needed a change of environment, smaller classes and teachers I trusted. Well, she's getting all that and a whole lot more. I hope. Either way, she has teachers who are caring. But then, so does my son in our home district, this year.

When dusk sets in and bedtime looms, that witching hour of old comes alive once more. Fears of men climbing the house to break in through windows (despite our barky terrier,) fears of arms coming out from under the bed, intrusive thoughts, and lots of other PANS-ish symptoms pop out. She's like a Pandora's box of neuroborrellia (and Bartonella and Babesia) symptoms. It's not much different from when she was a baby. A "sweaty little piglet," we called her, unaware that her night sweats were a symptom of Babesia. Unaware that Babesia even existed. The only way she (and I) could fall asleep at night was with her lying on top of me. Although she was a week late, I always had the feeling she wanted to crawl back inside the womb. At 2 days old, she managed to move her tiny body closer to mine on the bed. She didn't leave our bed (for "good") until she was 4. And it wasn't for lack of trying! I'm very glad I didn't believe in the "crying it out" method because there's no way to know how much of her neediness was due to the Lyme and co. 

When she was 4, she was a confident, outgoing, cheerful little one. She's still a smiley girl. But she is sick.

Yes, I feel sorry and sad for us sometimes. I tell myself I'm stronger than I ever was (although I spent much of the weekend in bed, fatigued, loss of appetite, not able to bicycle or even walk with my friend.) I am stronger within, and I have the support of wonderful friends, some of whom experience the same type of evening and some of whom only know about Lyme through me. 

I'm hoping that we'll have her in good shape by the time she's in 8th grade. That's 2 years. I need a goal and I need to drive forward, toward that goal. Right now, I am slowly introducing the medications so that she doesn't have a bad Herxheimer's reaction. I know so much more than I did when my son initially began treatment. That's a plus. 

The minus is that I now know so much more than most medical practitioners. I have friends who buy the CDC crappy line that Lyme can be treated in 3 weeks and that long-term antibiotics are detrimental. I have family that wants to see all our symptoms as behaviors or characteristics of growing older (me.) I know that some of my executive functioning skills are warped right now, but I'm also self-aware enough to know that it's the Lyme that's the cause. My daughter is not old enough to know what she's really made of. 

Or does she? She does know she's a hard worker. Determined, even stubborn. A rockin' drummer who wants to dye her hair all shades and have a rocker's wardrobe. A little chef's helper (to my husband.) A caring, loving person. 

We'll get through this, yes, we will. And I'll eventually get my bedroom back, and my nights free from lying next to her until she falls asleep. She's my little girl still, sometimes independent and sometimes needy. But she has the support of good doctors and the love of her family to counteract the diseases that are trying to photo-bomb her brain.

Saturday
Sep132014

Sluggish September

And it's back...with the onset of September, and teaching full-time again, comes the chronic fatigue. I arrive home from work and lie down. On Saturday mornings, like this one, I sleep 10 or 11 hours and still feel whoozy, as if I'm walking through thick haze. My morning appetite is gone but I peel myself up to grab a bite to eat merely so I can take antibiotics. 

So many SHOULDS batter my mind.
I SHOULD exercise--if not a bike ride, at least a fast walk. 
I SHOULD do all the paperwork that is on my desk; or at least I SHOULD organize it (since I didn't get to it this summer because I wasn't feeling well until the last 2 weeks of vacation.) 
I SHOULD do the piles of laundry that await (but I have to get my kids to cart it up and down from the 2nd floor to the basement for me.) 
I SHOULD be doing all my physical therapy back exercises. 
I SHOULD call friends.  
I SHOULD go to the town homecoming football game with my husband (who took my son) because it would be fun and I'd get to see people. But I don't have the energy to talk with people in a crowded, noisy setting. Having folks over for a quiet, summer dinner is much more my style.
I SHOULD clean the house -- haha!
I SHOULD take my daily shower.
I SHOULD get up and take my antibiotics and get the kids their medicines (this one does get me up.)
I SHOULD give the dog some loving.
I SHOULD figure out what days I'm taking off from work so that I can still have spoons left to continue working (see this wonderful essay by Christine Miserandino.) 
I SHOULD work on the PANDAS conference we're planning (and I will do this) and the Lyme Challenge we're planning (and I will do this as well.)
I SHOULD go to my daughter's first soccer practice (my husband will do this; he is great about bringing the kids to all their activities when I don't feel well.)

I'm actually very fortunate and grateful that:

1. I CAN work and have a great job.
2. My husband is a wonderful partner who also makes good dinners.
3. I have connected with so many people who share and understand my experiences, both with my kids being sick and with my own challenge.
4. I have a comfy bed.
5. I have weekends off. 
6. I have a family that puts up with my fatigue and just teases me about finding me on my bed again.
7. I have a dog that loves me no matter how much attention I give him.
8. I know that I will accomplish many of my goals. 
9. I'm not as brain-foggy as I was a couple of months ago (and even then, I was able to push through and write curriculum for school.)
10. My son is doing SOOOOO well--this feels like a miracle. 

I'm still trying to figure myself out. When I'm really sick, I become an introvert (according to those online tests) but when I'm feeling well, I'm a mix, with many extrovert qualities. Who am I? Well, at least I know...but many of our children who have Lyme and/or PANS don't yet know who they are. I try very hard to differentiate between what characteristics belong to my daughter and what characteristics belong to the disease that is attacking her. "This is the disease," I tell her. "It's not who you are."

After all, the changes in my son are immense. While he's still on quite a few medications and stress can increase his symptoms, he is determined to achieve at the school he has returned to, full time. Not just determined to achieve, but confident that he can. He has friends, a busy social life, a new camaraderie with his sister. 

So, if I don't pick up the phone to call friends, or even email, much less go out, don't take it personally. I'm at home in my small men's underwear/shorts covered with tiny skulls (my husband rolls his eyes), and my husband's old gray long-sleeve shirt, just lounging atop my neatly-made bed, either reading, writing or sleeping. Or, if I'm lucky, correcting papers. And breathing the fresh air that blows in from the open window.

Tomorrow, I'll be up and out. I hope. One thing is for certain: On Monday, I will be at school by 7:30, showered, ready for the day. After all, I have to make money to pay for our medical bills. Good thing I love what I do. And next Friday...crash time again. Hey, we all need one day of rest.

Wednesday
Aug202014

And They All Rolled Over....j

and one fell out. Four in the bed and the little one said, "Roll over, roll over."

And it all begins again. 

My son claims he's about 75% recovered from PANDAS and Lyme symptoms. For today. Well, really, a week ago. Allergies set off his tics and although he went for allergy shots years ago, he's till got 'em.  For the last week, he's been Zyrtec-free so that he can test for allergies (again.) Zyrtec was doing a lot to control his tics. Not being on Zyrtec = not good for the 13 year old who stays up past midnight with ultra-sized ticcing reverberating throughout the house.

He starts school in 2 weeks and is looking forward to it. He wants to go to school!

Now, my daughter, on the other hand....

When we learned my son had PANDAS and I found PANS/PANDAS support groups on the internet, I heard about several kids in a family having the same disease. More than one child with it? I was aghast. I really didn't know that I could handle that and it shook me up. My son was so very sick--raging daily, sometimes hourly. I'd hold him. How could I put up with more than him? There were days I wondered if he would live; he was in so much neurological and emotional pain. On more than one occasion, we slept with him in the middle of our bed just to keep an eye on him. Or an arm. He didn't want to live. He'd wander outside in the middle of the night. I know that we saved his life, with the help of some wonderful doctors.

There's lots of talk of suicide going on lately. A few weeks ago, a lovely young woman suffering from Lyme Disease--really, truly suffering--in pain and without job, money, resources--took her life into her hands and walked in front of an oncoming train.  And then, last week, Robin Williams.... I read an excellent blog that argued that Robin Williams didn't kill himself; the disease did. And I agree. We need to differentiate between the neurological disease (which I prefer to mental disease) and the person himself. 

I'd be lying if I said I never contemplated life--and ending it--in the past few years. There were days that I felt that life was so hard, so cruel, that I wondered what our purpose is--why the heck are we here? All I could see was this dense, gray fog in front of my future. Sick family. Forgetting things. Financial hell. More pain to come.

However, I will do anything for my children, and although that would include taking a bullet to save them, it also includes doing everything I can to always be with them, supporting them, maybe someday babysitting their own children. I would never, ever leave my babies, no matter how old they are.

Bicycle riding brings joy into my life. Even though it also brings more back pain! So I rode and I rode, usually with a friend, and I laughed. And started seeing the blue skies of the world again. It was a long, cold winter (5 years of my son being sick,) but now it's summer. With an Arctic chill.

Last month, as I lay on my bed (as per usual,) feeling sick to my stomach, anxious in a Lyme way that's not me at all, my hip and back in pain, unable to stay awake, something occurred to me: my contemplation of life and death and scoliosis is a first-world problem. I'm not depressed. I don't have something neurological that is making me want to end the pain in my life. The Lyme in my body has caused some neurological issues--where did I put my glasses? What was I talking about?

About face. Mind wipe.

Oh yeah. I want the pain in my life to end and I'm taking every step, every doctor appointment to make that happen. I can't lie about moping, although I do wonder about the state of the world. I worry about the spreading of Lyme Disease (do they really think it's only 300,000 people a year getting this? I see Lyme everywhere now!) I worry about cures for Lyme and for PANDAS. I worry about being Jewish and hunted down, as is happening in all corners of the world, including Florida and New Jersey. I worry about ISIS and Hamas and about a friend's son who is joing the Marines--where will he end up?

And, worrying like this and bicycling with friends? I have a life. I have love, friends, doctors. So I've got disc bulges in my spine. So I've got an IVIG bill to pay off. So I've gotta go back to a job I actually love in a week when I'd rather be home bicycling and napping and being with my kids. So what?

Two weeks ago, I began for Bartonella now and my anxiety vanished. I think my doctor's a magician. I also think the mincocycline I was on before this gave me one huge herx.

So, there are 2 members of the family on antibiotics. There were three in the bed and the little one said...

Roll over! Now there are 3 of us on antibiotics and only one of us NOT.

My daughter was supposed to be the "well" child. When she tested CDC positive for Lyme, we opted to treat her more naturally, to avoid antibiotics which can affect her gut and immune system. How'd that work out for us? Well, she ain't doing so well anymore. The tables have turned. I had to remind my son that her "behaviors" are symptoms, that she is actually sick (as he was,) and to be patient with her.

Please don't judge my child, I want to shout to the world! For unlike my son, she does not contain her symptoms to just home. She is who she is and it all comes tumbling out. She's got a fiery, joyful personality--she's that girl with the curl in the middle of her forehead. And when she's feeling bad, it's really horrid. Although, nowhere as horrid as the worst times with our son. She's a drummer, she's a My Chemical Romance fan, she's a girl who can't wait to dye her hair (and has done a streak.) And she's 11. She's also the most cuddly monkey with the exception of my son, who can be just as affectionate.

Last night, for the umpteenth night (not in a row,) she could not fall asleep in her room, even with the family dog. She's afraid someone will break in.

There we go. Symptoms: Air hunger. Intrusive thoughts. Some little quirky tics. Separation anxiety. Auditory processing disorder. Some excecutive functioning issues. Handwriting. 

When she was born, my husband and I were surprised at how much she would sweat at night. We kept her in a onesie. At only 2 weeks old, she caught a fever and landed in the hospital for a weekend. They found nothing and I didn't know yet to ask for copies of all labs. Or SPINAL taps. I requested them this summer and should be receiving them in a couple of weeks. They had to dig them out of archives. I wonder if they ever tested for Lyme. Or Babesia.

So they all rolled over and one fell out. There was 1 in the bed... so far, my husband thinks he's free of Lyme. I'm not so sure but he's strong and we need him just as he is.

I do know that I've changed from that frightened mom I was a few years ago. I can manage two sick children. Not perfectly. Plus I'm fortunate that as my daughter's symptoms are worsening, my son is doing better. She starts antibiotics tomorrow morning for the first time. 

I'm not going anywhere. I will be a mom to my children for all of their lives, and as good a wife for my husband who deserves so much. I'll be writing my blog and teaching my classes and looking forward to someday having more energy so that I can write the two novels that are living in my head.

Just don't tell me my dog has PANDAS also. 

My dog waits patiently while I blog.

Sunday
Aug102014

Finding Normalcy

Call me Marlin. 

My kids left on a jet plane on Friday. By themselves. Without their parents. And they're kids. Did I say without their parents?

Phil: I had a tough time when my oldest went out on the drop off.
Marlin: They just gotta grow up some--the drop off?! They're going to the drop off?! What-what-what are-what are we, insane?! 

The good news is...they're visiting their grandparents. My son is healthy enough to fly! He's healthy enough to be without his parents (note: one of his PANDAS symptoms was separation anxiety.) The good news is: their grandparents kept apprising me of their status:  "Leaving for the airport now." "At the airport so we can get passes to meet the kids as they get off the plane." "They're here!"

And my two babies who are no longer babies are having a blast! They don't want to come home.

But standing at the airport, handing over the doctor's letters that provide proof that they need to carry all those pills in their carry-on bags (sorted by morning/evening for both, with an icepack for the probiotics and Samento,) I fretted. OMG OMG OMG--what if something happens? What if the germs are cycled through the plane and my son gets sick? He's immune deficient. 

That morning, I sprayed both kids with thieve's oil. I mixed it with the vodka that has sat for more than a year in our downstairs freezer and put it in a spray bottle. My daughter giggles at the idea of having real "alcohol" on her skin. A week before, when my son had a stomach bug, I did this (got the idea from a friend.) I sprayed my son's feet, sprayed my daughter and myself. My husband just laughed and said I was practicing witchcraft. Well, guess which member of the family got sick from my son? It wasn't the dog, either.

DoryHe said it's time to let go. Everything's gonna be alright.
Marlin: How do you know? How do you know that something bad isn't gonna happen?
DoryI
don't...

It took forever to get through "Special Services." I had to write descriptions of both kids and describe the clothes they wore. I had to write my dad's name, address and phone number. It took a very long time and all I could feel was gratitude for the thoroughness of Delta Airlines. They would look out for my chickadees.

And then, before we knew it, we hugged good-bye. The kids walked, grinning, to the door toward the plane and were gone from our sight.

At 10:35 AM, we were driving out of the airport. It was the time the plane was supposed to take off. We reminded ourselves that flying is safer than driving. I prayed my daughter wouldn't have to use the vomit bag.

The first day, they swam all afternoon. And swam again after dinner. My 11-year old daughter helped make dinner. And at 11:00 PM, the phone rang. "Hi Mommy, it's me, ..." (and she always gives her name as if I don't know who it is.) "I miss you so so so much!" And there were some tears.

Well, last year, she went to sleepover camp for the first time. It was an amazing respite from the agony of dealing with an older, sick brother. She told us she was homesick but later recanted, saying she only told us that to make us feel good. 

This year, she happily returned to sleepover camp for two weeks and truly was homesick. Her brother is in a great place, it's the best summer our family has had in years upon years (except for my own horrible chronic fatigue, sudden anxiety mixed with gut pains in July, but I changed antibiotics to treat for bartonella and am not quite so tired or sick now, and, of course, there are my daughter's babesia symptoms.) But the glass is half-full now. It's a freaking five years and we're finally doing fine. Relatively speaking.

I knew she'd get over it. She had grandparents to nurture her there. And sure enough, the next day, we hardly heard from the kids at all. 

I let them have that space. I knew they were happy, loved and secure.

So, what'd hubby and me do? Throw a small party!

In a few days, we'll return to the airport, an hour early, to sign in and meet them as they get off the plane. They will be different children from the ones who left. This is the first time my son has ever been away from home for an extended time...with the exception of a hospital stay when he was 9 years old, a hospital stay that should never have happened, a hospital stay for a boy whose doctors couldn't figure out what was wrong with him. And a hospital that only permitted parental visits for two hours each day.

Now he's away. He's confident. We face-timed with the kids this morning and they were silly. They told us they had one argument and it was really a misunderstanding and they made up. Wow.

Marlin: I promised I'd never let anything happen to him.
Dory:  Hmm. That's a funny thing to promise.
Marlin: What?
Dory: Well, you can't never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo.

They're definitely having fun.