I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Thursday
Feb142019

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.

Sunday
Jan132019

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.

Saturday
Jan052019

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.

Sunday
Nov042018

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? 

Monday
Oct082018

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