Why a PANDAS Parent Didn't Answer Your Email

Today, in the New York Times, an opinion piece, Why I Didn't Answer Your Email, discussed reasons why a parent of neurotypical, healthy children wouldn’t return an email. Her children needed help with homework, a snuggle before bedtime, reminders to clean up after themselves. To conclude, it was a pleasant essay about priorities and the importance of family. But it rubbed me the wrong way because really? You have a normal, healthy family and can't make the time to respond to someone who clearly cares enough to write? Please!  

I asked my fellow mamas, moms of kids with PANDAS, PANS and Lyme about how daily events occurring in the midst of an average day interfered with them answering an email from a friend and this is what I have so far received.

So, here’s an alternative-world essay, pieced together from the voices of many who come together to create a topsy-turvy, true-to-life PANDAS orchestra. In your and my words....

On Monday, when you first wrote, I would have answered your email, except I was spending all day on the phone with the insurance company, trying to get them to pay a claim. And then I had to organize weekly meds and supplements. Not only that, but I needed to support other parents of sick kids in the online support groups.

I would have answered your email after that but I was planning a meal that was safe for my kids. Then, I needed to homeschool because my child is currently unable to attend a full day outside program.

My child is by my side from the moment he wakes to the time he goes to bed—and then, he’s still by my side because he can’t fall asleep without me helping him. Everything I do is interrupted.

But I had resolved to answer your email and would have except that I needed to restrain my child from raging and possibly injuring herself or someone else in the room. Plus I sort of have to micromanage my family to prevent my PANS kid from exploding. Or take care of the arguments that break out in the rest of the family due to the confusion and blame and the general state of chaos in the house.

I was going to answer your email Tuesday except we had a doctor appointment. We got there early, but needed to wait an hour to be seen and I had to run out to get my child to return to the office several times when he wanted to escape. Then, we needed to go to the therapist and then I had to see the chiropractor for myself because every muscle and joint in my body is excruciating to me (I have Lyme also.)

Wednesday, I had every intention of writing to you, but I had a meeting with the educational advocate, prepping for an emergency IEP meeting. I then fielded calls from my insurance about the denial of my appeal for IVIG approval. I arrived home, cooked three separate dinners for family members while trying to keep one of the kids from melting down during the witching hour, ran an Epsom salt bath, got the children ready for bed.

On Thursday, I sat in my car for two hours, after driving for 40 minutes to get to my child’s therapeutic school, trying to get my son to calm down enough so that I could coax him to his classroom. Then, I patched holes in the wall that have been sitting there since his last rage. And took my car to get the shattered window fixed. Scheduled appointments. Took my “typical” child for her appointments and activities. Then dealt with a tutor who lectured me on my “bratty” child while I tried to explain OCD to him.

On Friday, it was too hard for me to write an email as I was watching my child pull her hair out in clumps. I had my hand on the phone, ready to call for the hospital, but the doctor reached me and, as it turns out, a couple of Benadryl and Motrin did the trick this time. Then, I went to the pharmacy to pick up meds, but burst into tears in the parking lot and just sat there, like a fool, crying my eyes out (for I don’t know how many minutes) before wearing my sunglasses while I picked up my prescriptions.

On Saturday, I was actually kid free for a couple of hours! My husband took the kids out and my daughter did great but let it all out when she got home, as usual, and we had rages for the rest of the evening. But totally worth it! So what were my glamorous plans as a PANDAS mom? Well, I spent twenty minutes sewing up a cushion she ripped. Next, I was off to Spackle holes she made in the walls. While the Spackle was drying, I compared supplements online because I actually had enough quiet to think for once instead of randomly clicking ones I know are overpriced on Amazon. Then I tackled some of the chores my kids were supposed to do but have been in refusal mode because if one child can get away with no chores, why should the rest have to do them? And I just wanted a tidy house. Just once, for a few hours, a nice tidy house. But I wasn't answering emails.

It’s Sunday but I won’t be answering emails today. I haven’t slept and feel like a decomposing log. My kid woke me up last night, sleep walking and filled with night terrors. She wouldn’t fall asleep on her own after that so I snuggled her. Once she finally started breathing heavily, my mind wandered, wondering what will become of her if we can’t fix her. I started questioning if we were doing all we could and fretted that we couldn’t see yet another doctor, for we’re out of money. And then I started thinking about the family members who have been doubting and criticizing me. I got up and made coffee to take away my migraine before going to work. And then realized, it was Sunday and I did not have work. But I won't be going back to sleep because I have to break up the disagreement starting between the kids that will lead to a full out rage in a matter of seconds.

So you see, I don’t know when I’ll answer your email. I would have answered your email when I had a slight break, but I was just too tired to think of anything else. It was finally quiet and I wanted to do nothing—finally! Do you understand the words PURE MENTAL EXHAUSTION? It lives here. In my home.

But if you still think I’m important to you, keep emailing. Keep calling. Keep texting. Because I truly do want to answer your email. I do want to have a life outside of this traumatic isolated one. Because you’re important to me and please, please, please, do not give up on me because I am clinging to a lifeline and you just might be part of it.

The Rain is Calming

It's the perfect rainy day. Not too chilly for Northeast winter. Heck, we could be getting a pile up of snow and have to shovel repeatedly. But instead, it's a gray, drippy day and I love it.

I woke for the puppy, then went to my yoga class, forgetting it was canceled. So I'm researching literary agents for my YA fantasy novel; I'm pursuing my dreams. My son is singing a song he wrote; he has band practice later. My daughter is showing me her photography from her walk with friends last night. My husband has homemade chicken soup steaming on the stove. The puppy follows us all first with her eyes, and then with her long, spindly legs once we move from the room.

The glass bottom fell off of the coffee pot this morning as my daughter was washing it. Naturally, I did what you're not supposed to do--picked up the large broken glass fragments with my fingers. And lo and behold, my finger was bleeding. Never happened before! (Duh!) It's a typing finger, of course (they all are.) I'm fine and we gave the kids a couple of dollars to walk down to the store and buy themselves a cup of coffee. The kids are drinking it, not the adults now, in our house. So they did, taking an umbrella with them. 

It's the way things can be, for today.

Part of me keeps waiting for the bottom of my world to drop out from under me, again. Why hasn't this happened yet? For years now, we've traveled from trauma to illness to adrenaline crush. Now, for a few months, we've had stability and success, happy voices and healing. When will this calm break? 

My idea of success has changed, there is no longer perfection, my views of the world have shifted. Happiness can be found sharing a riddle or joke with students in my class, or having lunch with a few. Happiness is my son calling out, "Hi, Mom!" when I come home from work. Happiness is my daughter finally loving her super curly hair.

Lyme has been haunting me, though, and at last, I'm treating again. Yes! A chance to improve, to feel better.

An increase of symptoms slammed into me on and off for the last couple of weeks but today is a no antibiotic day, a pause day, and I'm at rest, in every way. I'm grateful for my medical provider, who believed in my symptoms and took a chance on treating me again. I'm grateful that I do respond to medication and hopeful that I can regain not just my energy but that little extra something I used to have. One of my best friends likes to remind me of our trip to Greece many years ago, when I would wake cheerful, early and revving up to experience every single wonderful thing two people could possible take on in one day.

I want that energy and that part of me of me back. I want the me who used to waltz around the living room with my babies, singing Shall We Dance. I want the me who could bicycle Friday nights, Saturday mornings, Sunday mornings AND go rollerblading in the afternoons. 

But right now, I'll listen to the rain pouring down. And to the puppy's collar as it jingles whenever she runs about the house, the older dog barking at something outside, the keys of my keyboard. And feel grateful for this series of moments in which everything is warm and as good as it needs to be.

Mold Mania

Ahhhh...the mold wars just got more personal. Recently, I was diagnosed with CIRS (chronic inflammatory response syndrome) as a result of mold. That's a mouthful. I've been reading/skimming on and off about mold for years as it's a topic that comes up when dealing with Lyme. I have to admit--I'm not 100% a believer. I know this will cause a lot of grief among the "mold-knowledgeable" community but here are my issues.

1. There is no freakin' way I can afford to leave my house OR to remediate. My house is close to 100 years old and our money has gone to medical bills (one deep, dark hole that will never be refilled.)

2. I have read too many times about people leaving behind ALL of their belongings as they claim that everything that is porous can be affected by mold. I won't do this. 

3. Heck, I don't even want to stop eating peanut butter. I've given up dairy, gluten, etc., etc. and I'm tired of making my life so different. 

4. I am NOT going to strip off my clothes and shower every time I go to someone else's house or my place of work or a store and then return home, so as to prevent mold from entering my safe space.

5. I am not moving to a dry area. Even the most arid of areas are said to have some mold. I prefer not to contend with scorpions and snakes. No thanks, but ticks are deadly enough. 

6. How much of this is real? Seriously, I know many people question Lyme and I roll my eyes at those people, much as some of you are rolling your eyes at me now. But it's a monstrous suspension of disbelief for me to believe that yet one more thing is making me sick and/or preventing me from being well.

7. Even testing the house is pricey. And everything involved with mold is EXTREME. Which makes me doubt. I don't do extreme. Usually.

I have recovered from Lyme and co-infections. My blood tests are much improved. I can live with residing symptoms, but it's hard to deal with the everlasting fatigue which comes and goes.

My medical practitioner thinks that dealing with mold is the key to helping me fight off past infections (like EBV.) But on the mold/symptom questionnaire, I interestingly didn't show enough symptoms. On a visual online test, I came out at 80%. That's pretty good, right? So are we merely looking for something to blame my fatigue upon, especially as I live in an old house with a basement that leaks? Would it be safe to say that EVERYONE has CIRS?

I know that some of you are totally disgusted with this and are probably shouting at me to get out of my house. But to where? Who says the next house doesn't have mold? My friend tested her house and it was FINE! But when she dug up a room, she found mold anyway. 

So my question is--how do I live with the mold that is going to be in my life? How do I change MYSELF so I can tolerate it? I'm supposed to be on Welchol and a coconut charcoal (have started slowly as I just caught a virus.) There are many of us--families, parents, kids--who no longer have the funds to fungus-free our homes, who cannot move, who cannot replace every piece of furniture and clothing. In the mold support groups (from which I'll probably be tossed), it's black and white--discard everything, leave. 

Maybe I'm not sick enough to do this. Mabye I have mold at work, in which case I wont be able to leave it anyway. Maybe I just wanna eat the Reeses peanut butter cup from Halloween.

In all seriousness, I need a different approach to mold. Any suggestions? 

Reclaim Life

I'm ready to blast out. 

Reclaim life.

Be bold, take an adventure, make my move, my mark.

Not be afraid that life events will drag me back down again. 

Because, oh, they will.

They will pull and perseverate and gnash their yellowed teeth until

I let go and drop to the floor once more

roll myself into a ball

cocoon myself in my home, my bed, my quilt

not take calls

but the calls have stopped anyway, haven't they?

and it's not so easy to be a ball

it does tend to hurt the back, the joints, the neck, the grasping hands around the bent knees

but it's also not so easy to bend away from that petrified position 

once atrophy has set in.

How many freaking knocks can I take, anyway? 

I stand up and I'm punched in the stomach.

I bend over and I'm thumped on the back.

I strike out and my arms are slashed. 

The pain keeps coming, from all sides

until I learn to expect it

and that's when it stops, when I inch up, ever so slightly,

peel back the quilt, sit up in bed

but just when I start to trust the calm

pain returns, doubly so

[because it's tricky 

and it's not there to be mean

IT JUST IS THERE

Why me? I ask

Why me? You ask]

But I'm done

I've played the game

Been hit with

sick child/ misunderstanding doctors/ challenging school district/ humongous medical expenses

family strife/ my own illness/ more medical bills/ horrible credit card statements/ finding doctors

missing work/ disbelieving family members/ clutter/ more medical bills/ lost childhoods/ sadness/ too much stress

I take a breath

Maybe I understand my kid's fatigue better because I too suffer

But I will recover

I strive to be strong

to be back on my bicycle

and I do

I do 

I do recover

I am strong

I keep going

I am the example

I can do it

So can you

So can you

It becomes a mantra

I rediscover my need to not just stand up straight

but to stretch my back and challenge my legs

to be with friends and talk about something other than illness

to laugh

to sit in the sun

to laugh again

to hug others

to lie on the beach

and not be pulled out to sea each time

but to fight the undertow

I fight

because that is what I have become

I compartmentalize

because that is what I must do

I find pleasure in moments

because that is the way

to survive

and now 

that is no longer enough

I have no control over the fate of my child

over the course of the disease

I have no control over my own internal organs that are affected

but I will forge ahead 

and begin, once again, to dream

I wanted to travel, write, experience LIFE (not sadness, although that is a HUGE part of life, to be sure, and once upon a time, I believed that sadness and agony were crucial to a good artist/writer but I swear that I've had more than enough to write a zillion novels by now)

I need to remember my dreams

remember who I am

before this

and after this

and even, during this

I am exploding out of my cocoon, grasping back the life that waits

telling my children to follow my example

for through my strength they will bloom

there are still moments of

grievingstressanxietydespairdesperationdepressionrollintoaballdontletmegohugme

and

lifesuckswhatdidIeverdowhowasIinmypastlifewhywhywhy

There are more moments of

I can do this despite

I will go beyond

We will 

I hand you my ball of strength

it can be shared like fire

Use it well

and pass some on

Dedicated to a special friend, to all my special friends, the kind who will pass this energy back when I most need it. With love,

Lisa W-K

Tired, Just Tired of Lyme

I'm tired.

I'm tired of the world not understanding chronic Lyme, of doctors disrespecting the other doctors who treat it, of doctors saying it doesn't exist. 

I'm tired of family and friends questioning the amount of money we've "thrown" at treatments that haven't worked or maybe worked only for a short amount of time.

I'm tired of family giving up on us. I'm tired of watching every word I say. I'm tired of not having much to think about besides chronic illness some days. I'm tired of trying to convince someone else that chronic Lyme exists. I'm tired of arguing about disease and transmission.

I'm tired of there being no damn cure. Of there being no good testing. Of doctors with conflicts of interest or simple ignorance arguing against the evidence of the persistence of Lyme. I'm tired.

I'm tired of relapsing, of not always being filled up with energy. I'm tired of not being 28 anymore, with my 28-year old's high energy.

I'm tired of the financial struggle; hell, we could've had a zillion vacations or purchased a summer home in Tahiti instead of dealing with this.

I'm tired of the emotional struggle, of seeing kids fight before they're even fully grown, while their peers race through the normal hurdles of life. 

I'm tired of people you thought were supportive suddenly questioning everything you believe.

I'm tired of pretending for moments at a time that all is calm and OK when it won't be in five minutes.

I'm tired of putting on that face, you know the one that you wear when you're at the grocery store and someone asks how you're doing..."Oh, fine, how are you?" I'm tired of wearing that face even for family members. And I'm tired of not spilling all to family and close friends so that they have a true picture of what is going on, but if I were to spill it all, there would be judgments. 

I'm so tired of being judged. And we are judged. Everyone who is chronically ill is judged. It's yet another prejudice that underlies our culture. We become the "them." 

I'm tired of having a happy day only to return to grief. I'm tired of coming home. I'm tired of struggling for years.

I'm tired of asshat doctors saying that PANS doesn't exist or it can't happen to kids who have autism or it must have a sudden onset or must only be caused by strep. Even if these issues don't pertain to my kids, I'm tired of them because they affect people I hold dear to me, other parents who are TIRED of this.

I'm tired of being a pioneer. I'm tired of feeling alone and forgotten.

I'm tired of giving up my dreams. I'm tired of looking older and losing precious time with my babies. I'm tired of missing out on normal childhood fun. 

I'm tired of explaining myself. I'm tired of forgetting vocabulary and I'm tired of feeling cornered when attacked and unable to come up with the correct language and ideas.

I'm tired of not being there for friends as much as I would like to be. I'm tired.

I'm tired of fearing that there is worse. I'm tired of fighting for treatments, trying to figure out the right doctors. I'm tired of the huge expenses and the fees that some doctors demand. I'm tired of not going to all the right doctors anymore because we're not billionaires.

I'm tired of being sad, of questioning the meaning of life, the significance of our existence and beliefs. I'm tired of praying and wishing for dreams that don't come true.

I'm tired. I'm grateful.

I'm grateful for the warriors who continue to find the words and fight. 

I'm grateful for the people who add to the list of studies done to chronicle chronic Lyme.

I'm grateful for the actors and athletes and politicians who took a bite out of a lime to increase Lyme Disease awareness in the #LymeDiseaseChallenge. I'm grateful for Yolanda Foster for kicking it into gear after 5 of us moms across the country launched it after months of intense work and planning. I'm grateful that it continues, several years later although I'm no longer as active with it...because I'm tired.

I'm grateful for the scientists who continue to study the persistence of Lyme so that they can create a cure.

I'm grateful for the doctors who put their work on the line so they can treat it, for the doctors who look beyond an erroneous blood test to diagnose Lyme, to the doctors who struggle to see the big picture.

I'm grateful for friends who feel the same way and tell me so.

I"m grateful for all the writers and advocates in our community who just don't quit. I'm grateful for people who feel it's their life's work to make change. 

I'm grateful for small moments of tranquility and large moments filled with laughter. 

I'm grateful for wine and chocolate and bicycling and yoga. I'm grateful for happy dogs, beautiful sunsets, music and books that let me escape.

I'm grateful for the reaching hands and words and love from people I've met often or haven't even met in person.

I'm grateful for doctors who say that everything will eventually be OK.

I'm grateful for my own personal need to make change so that others don't endure as we have done.

But I'm tired too, and at times, I just need to stop. And I am tired of feeling tired.