Twenty Twenty: Lyme, PANS and a New Decade

It's upon us. 2020. A decade that can finally again be referred to with an "ies" at the end: twenties, thirties, seventies.... Perfect vision. As if anything can be perfect. One hundred years since the hard-fought-for women's vote. A decade that could all too easily repeat that from 100 years ago in terms of anti-Semitism and government control. A new decade in the life of my children.

A new year and a new decade of medical advances--hopefully.

What do we leave behind? Ten years of treating. Ten years of memories.

Ten years ago was our start with PANS/PANDAS.

A collection of information and research has been accumulated over these past ten years when a decade ago, there was barely anything, especially on the internet. There were hardly any doctors treating. Schools knew nothing. Saving Sammy hadn't yet been written; My Kid is Not Crazy hadn't yet been filmed.

There still aren't enough doctors treating PANS, PANDAS or Lyme. There still aren't enough mental health counselors or educational institutions who understand and support our families.

What do we have to look forward to? There has been a spike of Lyme diagnoses and illnesses and these will probably continue to increase.

Maybe this will lead to additional research and a cure.

But, I am not holding my breath.

We are in the decade of too much social media (but please, don't stop reading), toxicities in the soil, overly vaccinated children, smart meters, cell phones (mine's more faithfully by my side than is our family dog). We are in the decade of increased cases of anxiety, attention issues, depression in our nation's children. We are in the decade of vaccination mandates, of a loss of medical exemptions, of a usurpation of religious rights.

We need a break already.

We need to leave the confines of our houses, our dis-eases, our toxicities, and bathe our feet in (well, semi-toxic) soil and (polluted) oceans and beaches. We need to walk or run or cycle or horseback ride until we feel that we are flying, soaring above it all. And we need to contemplate--what is life all about anyway? Why is there so much suffering? Why was life so much easier in yesterday's yesterday? And how do we get back there?

My advice--and I'm not a doctor--is to treat all infections as aggressively as you possibly can while your child is still young. Treat before the child refuses to treat. Keep checking for triggers. Got PANDAS? Kid depressed? Look for strep in the entire family, again. And again. And again. Do it now. Don't hesitate. 

My advice--find a doctor who can do it all, but no matter how wonderful that doctor is, second guess them. Our PANDAS doctor didn't know enough about Bartonella at one time and then our carefully chosen Lyme doctor never tested the family for strep. Which had returned, much to our dismay. The most fantastic doctors are still learning. We parents have a key role to play in this. 

My advice--connect with other parents in our community, because the outside world, including extended family, usually gets tired of the same old story and wonders why your child isn't yet better. They will blame you if you're not one of the fortunate ones with excellent, supportive kin.

My advice--find those people who have gotten their kids into remission and find out what they did.

My advice--What works for one child might not work for another. Always keep this in mind. And be flexible.

My advice--get out of yourself and help someone else. It brings meaning to your trauma. It helps you forget, for a moment, your own story. Or it helps you to reframe it. 

My advice--don't talk to extended family about your child if they show judgment, if they criticize, if they reflect disbelief. You won't persuade them, no matter how many PubMed studies you try to send them. Spare yourself.

My advice--PTSD is real, our PTSD as well as that of our children. Take steps to deal with it and don't let anyone tell you that you can't possibly feel that way. 

My advice--when you finally get a moment to breathe, start taking care of you, yourself. Treat your own symptoms, if you have Lyme. Go out once in a while. Socialize even if all you can talk about is PANS. Make yourself not talk about PANS or Lyme for an entire night. Read a book that has a happy ending. Listen to music. See a therapist. Work on your marriage if you have one. Exercise. Optimize your own mental health through friendships, meditation, runs in the park, yoga, bicycling, singing, dancing, playing pro football--whatever it takes. 

This is the decade of re-discovering ourselves, reflecting on the activities and friendships that bring us happiness and choosing to bring more into our lives. Pushing through when we don't feel well. Resting without guilt when we cannot push through. Connecting any way we can with others and reaching out to guide others when we can. Hibernating without guilt when we cannot. Then rising again, hopefully stronger, like a phoenix.

Twenty-twenty. 2020. We've got this. A new chapter. A new book. May this year steep you in sweetness and love, acceptance and education. May this new year bring healing.

New Vaccines on the Horizon

Scientists from three top universities and international research centers report that several new vaccines are currently being tested on mammalian populations that will have direct impact on human lives in the next half decade. 

Dr. Elias Mishigas, top researcher of Itsadeal Corp., reports that several new vaccines currently being tested on mammalian populations will have direct impact on the lives of humans in a manner of years. "These vaccines are particularly vital to the health of our young people," says Dr. Mishigas. "We expect them to be mandated in all educational systems throughout the world."

The first of these vaccines will benefit school children as well as the professionals who work with them; it's a vaccine to quell feelings of inhumanity and to further excite empathy. A varying vaccine will be created for politicians and there has been a grassroots petition, ironically from anti-vaxxers, requesting that the scientists create a single-dose, highly viral version for executives at pharmaceutical companies.

Another new-to-market vaccine is casually referred to as the Schmendrick. This vaccine will assist in keeping people employed; it will prevent hazardous mistakes, tripping on sidewalks, speeding on highways and children falling off of their seats in the classroom (or falling from trees, should they deign to climb them).

The last exciting vaccine will be introduced in about five years (too late for people parenting teenagers now) and will be administered to pre-teens, with the intent to eventually stab infants. The anti-ass vaccine, as it has been nicknamed by assisting post-doc students, will save young people the despair and inner torment that frequently plague children as they travel through adolescence. Side effects of this vaccine include a very open relationship with parental figures, fewer broken walls and crashed cars, obedience and increased affection. Currently, the vaccine is off the market as it is too potent, creating a laissez-faire attitude that diminishes motivation (the five humans studied gave up all sports, failed to get good grades and settled in for nightly Netflix, without the chill.)

Vaccines will be administered via needle, nose-spray or a lotion that is rubbed into a pillow (upon which the patient sleeps, absorbing the effects directly into the nasal passage and brain). Adjuvants and other additives include aluminum, formaldehyde, squaline derived from the liver of sharks, fetal tissue, arsenic, carbon monoxide and trace amounts of Botulinum. The vaccines themselves are completely safe; the adjuvants and additives may result in rashes, rectal bleeding, encephalitis or worse, but only if there are generations of documented immunological issues in the biological family, and even then, all of this will be printed in size 2 font.

Note: all studies have been funded in part by Merck, Eli Lilly, Pfizer and the Korea General Chemical Trading Corporation, a North Korean industry leader. This author has no ties to any of the above and simply believes in safe-vaccinating and a happy, healthy life.

Holiday Buying Guide for Parents of Kids with PANS & Lyme

“It's not how much we give but how much love we put into giving.” ― Mother Theresa

It's that time of the year again! Holiday time is approaching...if you're family or friend of a parent who cares for a child suffering from PANS/PANDAS/Lyme, which of these fit your budget? Some are free!

And in no particular order, the most wanted gifts for a parent of a kid with the above are:

1. Gift card for healthy take-out or a complete healthy dinner (it can be hard to cook when a child is flaring, or the parent is just exhausted or everyone in the house wants a different food because of OCD and food sensitivities.)

2. Gift card for health food store because so many supplements are a must, as are organic foods.

3. Babysitting: FREE for giver!!!! An awesome gift for the recipient!

4. House-cleaning services: Oh, yes, oh, yes, more. Can be FREE if you do it yourself, but that might be embarrassing for the recipient.

5. Home entertainment: books, movies, games--anything for computer or TV: Distraction and Coping Skills 101.

6. Home repairs: because these fall in priority when medical costs consume the entire budget.

7. Gift certificate for medical services, because so many qualified doctors can't and don't take insurance (and copays add up as well).

8 . A nice card telling someone what a great parent they are and how you admire how they’re handling these painfully challenging experiences. Can be FREE.

9. Hugs (goes with #8): FREE

10. Acceptance and an Attitude of nonjudgment: FREE
 

“A kind gesture can reach a wound that only compassion can heal.” ― Steve Maraboli 

11. Compassion and Patience: FREE

12. A cup of coffee or tea, with a listening ear. Maybe chocolate too.

13. EAR PLUGS

14. Essential oils and diffuser (Lavender is calming; Thieve's oil will help kill infections). 

15. Basket of lemons (for detoxing)

16. Stocking stuffers or small Chanukah gifts: activated charcoal! Oops.

17. Stocking stuffers or small Chanukah gifts: Gum (for kids who are ticcing)

18. Fidget toys 

19. A year's supply of Epsom salts (these combined with lavender essential oil make an awesome bath.)

20. Punching bag; heavy duty (for parents as well as for kids)

 

21. Wall/door repair kit. Because. It happens more than you'd think. 

22. Whole Foods and Trader Joe’s gift cards

23. Good night sleep--can you purchase this?! Maybe take out the parent for a few drinks or just buy them a year's supply of melatonin. Make that melatonin for the kids. 

24. Year's supply of dye-free Motrin.

25. Salon gift card - because hair and nails are wayyyyyy down the list of priorities when there are medical bills to pay, but self-care is so integral and jump-starts happiness.

26. A Broadway show (but chances, are the kids will flare and the parents will have to cancel--combine this one with #3, even if the kids are older teens).

27. Bring a party brought to the home of the suffering parent if they can't get out (note: a friend once did this for me and it was so lovely that I'll always remember it with such warm feelings.) 

28. A vacation away from the kids; this can be a cruise or a remote island or even a hotel room in the next town. 

29. Own private meditation/yoga guru

30. Prepaid IEP/504 plan advocate

31. Rescue dog (but check for allergies)

32. Gas card for traveling to appointments

33. Personal assistant to file and fight for insurance claims (You could do this too, but--warning--it's a ton of work.)

34. Free shovel service when it snows.

35. Pick up the kids and bring them to YOUR house for the weekend!

36. Home sauna and/or PEMF mat ($$$$) or maybe a gift certificate for a massage.
 

It would seem so nice to say that life will get better, but you don't know that it will.
 

It might feel right to state that the parent is strong enough to handle all of this, but none of these parents feel particularly strong as they endure the pain of their children.
 

So instead, let the parents know that you respect them, that they're amazing parents and that you're with them for however long it takes. 
 

“No one is useless in this world who lightens the burdens of another.” ― Charles Dickens

Find something that fits your budget? Giving does as much (or more) for the giver as it does for the recipient. Take a moment to brighten someone's day.
 

(And by the way, I would LOVE LOVE LOVE orchestra tickets to see Wicked, in NYC or even elsewhere (is it still playing in London?), if plane/hotel accommodations are covered. Just kidding. Not really kidding.)

 

No one has ever become poor by giving.  ― Anne Frank

Gratitude List: Thanksgiving 2019

Thanksgiving...gratitude...what the hell do I have to be grateful for? 

Sometimes I do feel like that and sometimes I'm just a little snappy because my MacBook Pro is old and the screen is getting fuzzy to my eyes and it's late; I just came back from picking up a teen from a friend's house. But it's Thanksgiving holiday and I don't have to set an alarm for four days.

So that's  #1: not having to set an alarm for four days.

#2 I'm grateful that I don't have a cold and can breathe in from both sides of my nose. A few weeks ago, a virus ran right over me, knocking me into my bed for more days than is healthy. I'm very much appreciating not being sick. Because when I was ill, I reminded myself-pinched myself-that I better be aware when I can breathe again at night. 

#3 I'm grateful that I can walk. Without pain. Without knowing where my right hip connects to my back bones. 

#4 I'm grateful that I don't feel like my head is bouncing around on my neck while I walk. This Lyme symptom was sent back into the dark depths from which it came (with Lyme treatment). Yay for antibiotics!

#5 I'm grateful for (cue the violins) love. That sounds so darn corny, doesn't it? But, get this: Love = hugs = oxytocin = good feelings. So even when I don't feel the love, because the kids are being biatches in one way or another (and I do believe I can say that about teens), I hug them. For 20 seconds or longer. And I try to push my positive love/spirit into them with my hug. Light and love and all that. But then they do something nice for me like take care of the dead rodent that got encrusted to the floor of our basement, and I'm suddenly like, they are so damn sweet!

#6 I'm grateful for my husband. Oh, we've been through a lot together, as have most parents in our position, and I am thankful that we can enjoy each other's company and support each other. He still makes me laugh. Stupid stuff a lot (shhh!) but he does. And I make him roll his eyes. So there. He encourages me to find my dreams and pursue them. He starts my car on cold mornings for me. 

#7 I'm grateful for the canines in my life, and I don't mean just the dogs. My teeth are important too! But the dogs give me their unconditional love (my teeth don't, unfortunately.) Both require trips to the doctor, and daily maintenance, but it's the puppy who wants to sleep with me and the older dog who jumps up from the sofa to welcome me home after a day of work. 

#8 I'm grateful for my friends. I will survive because of friends. My friends are gems, diamonds. Rare and treasured. Let your friends know how important they are. Some friends are chosen family. Others are friendly, positive forces who enlargen my life. 

#9 I'm grateful for my G-dmother. A friend who became family. She's so awesome. She's an octogenarian and my role model. Walks every day. Is having her living room re-painted because she wants a change. Is always so happy to see me. She gives me those oxytocin-hugs. And listens to everything if I need to talk.

#10 I'm grateful for the advocacy efforts that so many people in our circles, including some of my good friends, are pursuing. We are trying to make change. We are working to make change. We are making change. Do or do not, Yoda said, there is no try. Well, we are doing. And doing. Small steps, but hopefully someday we'll be walkin' out that door. 

#11 I'm grateful for bicycling. Because I can push myself, even with fatigue that robs my brain of cells. I'm stronger than ever (well, in the last few years) and I love love love my Italian-made bicycle although I wish it were lighter and faster and I really want to up my game. Now my daughter is joining me on rides--win-win! What do you do when you're full of angst? Bicycle! 

#12 I'm grateful for PANSLIFE. Which has connected me to the world, and with so many amazing people. Over 5,000 followers on PANSLIFE FaceBook now--wow! Didn't see that one coming when I started it a few years ago. Lots of people dealing with these issues, it seems. And that ain't good. But we support each other.

#13 I'm grateful for LymeLight Foundation grants. We're still working it, but couldn't have saved my kids without this gift.

#14 I'm grateful for doctors who care enough to challenge the system. Doctors who treat. Doctors who will write medical exemptions. Even though NY won't accept medical exemptions written by out-of-state doctors. I'm grateful for medical professionals who have more integrity in their pinkies than the DOH and the CDC has in...well, you get the idea.

#15 I'm grateful for politicians who aren't bought by Big Pharma! Oh yes, baby, so grateful for those people! Need more of them. I'm grateful for Robert F. Kennedy, Jr. who is fighting for rights.

#16 I'm grateful for music which has been a running theme throughout my life, from my early years when my mother blasted classical music and musical theater records to my adult years when I sang musical theater and opera and now to my kids being musicians (my son's band is taking off!) and to me trying to find my musical side again. 

#17 I'm grateful for my Kindle, which I take everywhere (except work) with me. I love love love to read; it's an escape to a faraway land, and when life gets tough, at least something is happy. And when life is good, well, I'm still dealing with fatigue and it's something I can do!

#18 I'm grateful for my brain. Oh, it has suffered. I've forgotten guitar songs and strums that I PAID to learn (from a teacher) and I've lost the names of artists who sing certain songs (I can always pick out Ozzy Osbourne though, and Queen and Elton John, of course) but the worst of the chronic Lyme years did a number on me. Plus, I have since learned so much medical stuff that it probably just shoved all the other nonsense out. Except it's not nonsense. I can talk about the symptoms of Babesia vs the symptoms of Bartonella and how the gut is the second brain and why we need safer vaccines as well as choice....still reading?

#19 I'm grateful for forgiveness. And resilience. And courage. We have been plummeted into a world wherein we need to practice these to come out on top. I'm grateful for family, for renewed relationships and sibling bonds. I'm grateful for milder outside temperatures and rain that comes at night. I'm grateful for the unexpected check that comes in the mail just when we most need it. I'm grateful for people who don't judge. I'm grateful for friends who want to know the real me. I'm grateful for those people who inspire me. (And M, I am going to write that book!) I'll be grateful if this post doesn't have any typos in it. Because I always seem to find one after it's published. But I forgive myself.

#20 I'm grateful for you, Dear Reader. You are here for a reason. We all are, even if we don't yet know why. Hugs. And I wish you a very happy Thanksgiving.

What are YOU grateful for this year? 

The Face of Health

"You have to remember that while you're treating, you're a bit fragile," my LLNP tells me.

Fragile? I'm freaking like glass. Only my brain is too numb to know it, so I keep doing what I always do, daily, which includes work and taking a kid to a music lesson and tutoring and whatnot, then shattering at the end of the day, unable to rise from my bed to go to the bathroom. Don't worry; I eventually do. Haven't wet the bed yet. And I actually brush my teeth, usually for the two minutes my smart brush tells me to do but on those awful extra fatigue-filled days, I tell the timer where to go.

Put a Type A personality into a Type Lyme body and what do you get? 

I had a total slip at work this week. Spouted to someone who clearly didn't want to hear about medical worries (not my own, but in the family) for two minutes without so much as a breath between (that trick was good when I used to swim) and then, and then, oh boy. I am so darned sorry. Was it the antibiotics? Hormones? A caring smile? The worry running over my already full cup? I'd been so good. Had kept it all wrapped up in a super shiny package that would stay shut until I got home, or at least in the car, but this time, those worries oozed out, worming their way out of every crevice. Kinda like my dandelion tea when I don't put the top of the travel mug on correctly. 

People don't really want to hear, I tell myself. Like really! It's common to say, "Hey, how're you doing?" as a greeting but how many times does someone actually answer with, "Crappy as all hell"? Or "I'm dying here." Or "To tell you the truth, I could lie on my bed and stare at my phone all day, because electricity zings up my leg and my hair feels like it's being pulled out, piece by piece." 

So, maybe the electricity thing is exaggerated. I mean, it does happen to me, but once every few days or weeks, not daily, usually, and if I stomp hard enough, it goes away. The hair thing? Oh, that. I can deal. I'm freaking strong. Torture me, do it, and I'll survive.

I think I've forgotten what I used to be like. I've forgotten how it feels to live without pain. But hey, what doesn't kill you makes you stronger, right? Pain? Strength! Look at me, tough, tough, tough. I don't even FEEL the pain anymore! Ha!

Yeah, I do. If I stop and live in the moment and listen to my body talking, I hear it and it screams. Back, wrists, big toes. Down dog has never felt so bad. But it still looks good!

Fragile? I have to work. I have to support my family. I have to take care of kids. I have to write my book. I have to DO THINGS. I have to figure out a way to make more money so I can move somewhere warm eventually and travel. I don't have time for fragile. I also don't have time for Lyme which is why I'm trying so hard to beat it, why I'm putting myself through this pulsing routine which makes my body feel like it's been run over by a reindeer every other night since Christmas Eve (and now it's February.) But to be honest, there have been days off where I didn't feel quite so run down. Oh wait, that was the weekend and I slept in. Oh well. 

Fragile? There are people in my life who only want the good news. Smile for me. Tell me what's working. Tell me something good. You've had bad news in your life for too long, Lisa. (Like that's my fault, like I brought illness of my family onto myself. Oh, wait. Maybe I did. When my kid got sick, I wished it on myself instead and voila! It happened! Unfortunately, I did not remove it from said kid in the process. Doctors might conjecture that I gave my kids Lyme in the womb. Other doctors might say that's not possible. Those other doctors might know something that the educated ones do not--to bury their heads, not believe the world is round, to side with the CDC and big Pharma so that they don't lose their licenses. Oh, for freaking sake, don't get me started.)

Taking a kid for medical stuff at a NYC hospital. Parking, driving in the city--not my cuppa tea. I need a stiff drink. Bourbon. I like it. Wine gives me headaches nowadays. Unfortunately, I can't drink this week because I'm on an antibiotic that will make me vomit if I do. And by next week when I am off the antibiotic, I will forget about that necessary drink. Which is also why I like bourbon. Because the bottle doesn't go bad after you open it. Do you know how many good bottles of wine were used for cooking in my house? Because they were opened for one drink and then abandoned, forgotten, neglected.

Fragile. I shouldn't be drinking alcohol anyway. Or having sugar. Happy Valentine's Day to me. Came home with a shipload of wonderful chocolate gifts. I should be eating more shitake mushrooms and dandelion greens, coconut oil and healthy protein. I know I know I know. I've done the hardboiled egg breakfast so many times, trying to get enough protein in. I think I've turned into Humpty Dumpty.

Putting myself back together again. That's what this is all about. It's also about not living my life the way I intended it to be lived. Notice I don't write "the way it was intended"? 

Then there's the other side to being fragile--the side of listening to the messages of yesteryear (and mom and dad, if you're reading this, I don't blame you, I'm an adult and can at least blame myself for not getting rid of old messages.) Why the heck do I need to be so strong? In reality, I'm not, when I spend 95% of my homelife in my bedroom, with the other 5% running up and down to the basement to do laundry. Why can't I admit, at least to myself, that I feel horrible and that it's ok to take a down day on a snow day and not do anything at all? Not clean the fridge, not write my book, not plan more advocacy work. 

Something to think about when I clear this brain fog.

But in the mean time, all you'll see is my game face.