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.

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.

“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:

 

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? 

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.

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.

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.

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? 

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

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.