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

Saturday
Oct182014

It's a Little Too Much

So, my iPhone calendar is being wiped clean after a month or so. I look back to check on an appointment or to plan something that should be a couple of weeks later than another date and there's nothing there. It's driving me crazy because I'm already having enough trouble with keeping up schedules, thanks to Lyme on the Brain. I used to be a master at it...work all day, go to a play rehearsal for 2 hours at night, go straight to a dance class, (come home, read till midnight and get up to do the same thing the next day.)

Now I don't know if I'm coming or going. I have the appointments with all our Lyme doctors stuck in my head, though. I don't even know when my hormonal cycles are anymore. I think they're off. But rather than becoming more spaced apart, as they should as a woman begins to gracefully age (!), they're coming closer together. I'm not having any more kids. I don't need this. I figure I spend a few hundred dollars monthly in supplies as it is. 

So, why is everyone irritating me? I try to be a kind, good-hearted person, and I think that I am, most of the time. But I have very little patience for certain family members. My daughter hitting her head while cleaning her room, then crying because her back went out (which it never did before but I know how it feels because mine has, but not since she's been old enough to know, so it's not mimicry.) My husband who says he absolutely cannot cook 7 nights in a row. My kids who pick up my iPhone secretly and bypass the security code by hitting the camera feature, only to take 130 blurry, grainy, silly-faced pictures and videos of themselves. 

I texted my son to let him know I'm putting the one of him saying he farted up on Facebook and tagging him.

I'm a good person. I didn't do that. 

I'm not a good person. I'm writing about it.

Leave me alone, leave me alone, leave me alone, I want to scream from the rooftops.

I've got a gripe list. I'm sorry. It's ever so...negative. But here it is. Well, some of it. 

The colleagues who started avoiding me when my son first got sick and I transformed from a smiley, jolly soul to an anxious, distraught one. Colleagues who are good teachers and care about kids (but apparently not mine.)

The friends who wrote me off (fortunately, there were very few of those) when my son showed these strange psychiatric behaviors that seemed to imply bipolar disorder, Tourette's Syndrome and OCD. The doctors to whom I just sent letters (thanks to a friend who created them, with footnotes and sources) explaining how they completely missed my son's diagnosis of PANDAS. Believe it or not, this was my new year's resolution. It's now October. I slipped a flyer for the upcoming Connecticut PANDAS conference in with the letter. 

Oops. How to guarantee that doctor never shows his face there, right? Well, maybe they'll look up pandasnetwork.com or even Moleculera Labs. 

Then there are those doctors who actually do believe in PANDAS but certainly not chronic Lyme Disease. After all, the CDC says that chronic Lyme Disease doesn't exist. And neither does the risk of Ebola in our country, right? Of course, right. 

CDC = Criminally Defective Conglomerate.

I went for a bike ride today. 

Beautiful autumn day with leaves on the ground, blowing across the path, through the woods and I wanted to turn around at half a mile. This is me, the bicycle rider, who was cycling 14 in one hour in June. If I were to graph my rides this summer, it would be downward in terms of speed and mileage. I did 9 miles today. Somebody passed me with his hands off the bars, just swinging along and I got mad enough to pull on everything I had, swing into gear, bring my bike up to 15 mph and pass him right back. Ouch. It hurt like crazy to stay ahead and not be passed again. I could feel myself breathing, could feel my right shoulder aching, the headache beneath my helmet. When I came to an intersection, I pulled over to wait for the friend with whom I was riding. Tried to look nonchalant as the guy passed me again (but hey, I was standing still--there's a difference.)

I'm resentful that laundry never gets done, that my back always hurts and I have to get others to carry the baskets up and down 2 flights of stairs for me. 

Last night, I hosted a book club party and I was melting down before everyone came over. Me--having a party on a Friday night when I feel like crap? But it was OK. I actually enjoyed myself with some very nice (and funny) women. And I didn't have more than a sip of the wine. I slept well after.

And the last big gripe? Money. I work my butt off to do a good job, bring home what could be a decent paycheck if I lived most other places in the country and it doesn't go far enough. We can't keep up with the mortgage payments. We keep trying to pay off credit but get sucked into extending it. I don't buy all the supplements I should be taking. 

There's always a positive, there's always a positive. Shut the he-- up, Pollyanna. Lyme affects much more than the brain and body. 

So, do I leave us feeling blue? 

Here are some good things, but not quite enough to fill my bucket today. 

I just got my son's name added to a fund-raising PANDAS t-shirt. He's out tonight with friends at a football thingie. My family is planning on taking me out for a nice dinner to celebrate my birthday (and my husband's which comes shortly after) despite the fact that we'll have to pay off the credit card bill someday.... Still, it beats past birthdays. 

The PANDAS conference is coming up and I'm excited about that (but have to start putting together the program and feel utterly overwhelmed by the smallest of things lately.) And we're planning a worldwide Lyme Challenge. I hope that between the CDC showing how inept it is and us spreading awareness, we will finally be taken seriously.

I think I'm just filled with everything I keep in most of the time. And I'm in pain a lot of the time. It's not horrible pain but it's pretty consistent, despite physical therapy for a few months. 

In the meantime, I have my books. Take me away, to another place and time....

Wednesday
Oct082014

Take the PANDAS Quiz!

How PANDASSY are you? Will you pass or fail the PANS quiz? Have a try...no need to submit your score.

True or False? Find the answers at the end of the quiz. 

1. PANDAS affects thousands of children across the world.

2. PANDAS is an acronym that stands for Passionately Angry (and) Nervous Disorder Affecting Snowbunnies.

3. Your neighborhood pediatricians all know a lot about PANDAS/PANS.

4. The best thing you can do for your PANDAS/PANS child is to give them SSRIs for the depression and to bring them to a psychiatric hospital.

5. PANDAS/PANS are not just pediatric diseases.

6. PANS can be triggered by vaccines.

7. Schools know everything there is to know about how PANS and PANDAS affects learning.

8. October 9 is PANDAS Awareness Day.

9. Families who deal with PANS and PANDAS typically spend a lot of money for treatments.

10. PANDAS/PANS is often distinguished by a sudden onset of symptoms that appear as behaviors and moods.

11. Kids with PANDAS are sometimes at risk for suicide.

12. PANDAS is another name for Tourette's.

13. Mozart may have had PANDAS.

14. PANDAS is like rheumatic fever of the brain (instead of the heart.)

15. PANDAS is a type of autoimmune encephalitis.

16. PANDAS/PANS is often over-diagnosed.

17. PANDAS/PANS is often mis-diagnosed.

18. Many doctors at first blame the parents for the symptoms of the children.

19. Family members are always so understanding.

20. PANDAS/PANS has received a lot of attention in the 100 years it's been studied in depth.

Ready to grade yourself? 

1.    T
2.    F
3.    F
4.    F
5.    T
6.    T
7.    F
8.    T
9.    T
10.  T
11.  T
12.  F
13.  T
14.  T
15.  T
16.  F
17.  T
18.  T
19.  F
20.  F

Well, how'd you do? Each question is worth 5 points. Below 70 means you need to start reading this blog. 70-79 means you might want to check out www.PANDASNetwork.org. 80-89 means you are far more knowledgeable and kind-spirited than the average human being. 90-100 means you kick PANDAS's butt!

Want to do more? Share a post about PANDAS/PANS. Hey, you could save the life of a child who has it. Literally. 

Donate. Go to www.PANDASNetwork.org. Even $9 for October 9 can help!

Sunday
Oct052014

Double Trouble

You know, it's not always horrid here, at home. At this moment, my son is singing and showering. My daughter is pounding away on her drums (and she's good.) 

But just five minutes ago, it wasn't so good. And five minutes from now, it might not be good anymore. And five minutes before bedtime, I can tell you it won't be good. Two nights ago, we had drama trauma. 

What's good is that I can listen to an entire monologue of "You don't love me, I wish you weren't my mother, I'm going to run away" and not flinch.

Been there, done that. I smile and tell her to just take the dog so she has a fluffy little terrier to bite any would-be kidnappers. 

Nah--that stuff doesn't hurt my feelings and it's relatively easy to not react. I know it's not my kid who is saying those monstrous things. It's the disease. I am sad that the disease is so powerful, though.

The latest OCD that my son hid for so long? It's not him. It's the disease. And son, we NEED to NOT have secrets. Symptoms mean an active disease. Active disease means medical treatment is necessary. Those thoughts of yours are OCD, not you. 

Tomorrow he goes for IVIG. One of his doctors had asked me to note whether he started to decline around the 8 week mark (because we extended this IVIG to about 13 weeks.) Well, the OCD has been there longer than that so it's hard to tell. But as to my kid needing IVIG--that just became much clearer. Yes, yes, yes. But I think Bartonella is playing a stronger hand now. Puberty reeks.

How much do hormones play in Lyme Disease? A heckuva lot. This past week, I was much more symptomatic than usual. All I want to do is lean on my hand, put my head on the table, curl up in bed. And my kids are at that age where the hormones are kicking in. In fact, it's almost a competition between them. Who has more leg hair?

On the positive side (and I'm starting to get sick of myself saying that, always, always,) when my daughter had a melt-down and took off in Target today, my son looked at me and asked, "Should I go after her?" He's a PANDAS pro by now.

She's upset because he gets upset (and takes it out on her.) Then he snaps back and is able to see himself as he was a couple of years ago by looking at his little sister.

Damn! What could Shakespeare have done with this material? 

Is my daughter as sick as my son was? I don't think so. I believe I've blocked a lot out. I haven't even written the worst of it in my blogs. She's having lots of trouble processing this year. She's having trouble learning and she feels stupid. Been there too, and now my son is bringing home grades in the 90s. I see many of the same symptoms in her that I saw in my son, plus air hunger from the Babesia. I just haven't quite figured out how to get her back. Holding my son calmed him. As much as my daughter is cuddly, holding her doesn't help. 

This too will pass...maybe? In two years? Less? More?

I'm tired. I have my own chronic fatigue, my own vertigo, my own memory lapses and my own struggles to at least get the laundry done at home (and teach my 22 students every day.)

I hate the fact that my kids are sick. 

Tomorrow, my son has his IVIG. My husband will take him. I work all day. We'll come home, everyone tired. Who makes dinner? If this were a cancer treatment, friends might bring over food. Well, maybe not if the cancer treatments had been going on for years and years. And really, who wants to worry about bringing a dish that is not only Kosher but dairy-free, peanut-free and gluten/yeast-free? Only my mother-in-law will tackle that one, but she lives an hour and a half away. Hmmm. We can't even order out. And on top of that, both kids have become very picky. Food sensations, you know?

Sorry for the down blog, but this is all too real. I'm tired of going to sleep with tears in my eyes. I'm tired. Oh, so tired.

But on the positive side...and there's always a positive side, right?

I'm very excited about the PANDAS/PANS conference in Norwalk, CT on November 15. Four top doctors are speaking. My husband designed the flyers. 

My husband cooked (gluten-free) spaghetti and meatballs with his own sauce with herbs from our garden for dinner tonight.

My son says he wants to be a neuro-immunologist someday, since he's been a patient to so many doctors (and he'd like to be on the other side.) He also wants to make good money. We'll see.

I have one of the sweetest classes I've ever taught (and their parents are sweet also.)

I have wonderful friends. 

I have a partner in this--my husband. We've become Lyme and PANS warriors together. 

And, if I can help at least one person because of my own personal journey, than perhaps I've helped save a life. And this turmoil and trauma is not in vain. 

But it still reeks.

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.