Musings

 

I want to wear blue wings and soar

above the screaming tantrums of today

 

I will take you with me (hold you)

as we gaze down upon the whispery earth

at tiny beings scuffling about

checking their clocks and bank accounts

 

Ah the life of a bird

Who does not love so much

that it hurts

 

 --LWK

Adult Blog Index

 

You are my 'son' shine 

my little 'son' shine;

you make me happy when skies are grey

You'll never know dear,

how much I love you

please don't take my 'son' shine away

 

I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by Coby, age 11

Wednesday
Aug202014

And They All Rolled Over....j

and one fell out. Four in the bed and the little one said, "Roll over, roll over."

And it all begins again. 

My son claims he's about 75% recovered from PANDAS and Lyme symptoms. For today. Well, really, a week ago. Allergies set off his tics and although he went for allergy shots years ago, he's till got 'em.  For the last week, he's been Zyrtec-free so that he can test for allergies (again.) Zyrtec was doing a lot to control his tics. Not being on Zyrtec = not good for the 13 year old who stays up past midnight with ultra-sized ticcing reverberating throughout the house.

He starts school in 2 weeks and is looking forward to it. He wants to go to school!

Now, my daughter, on the other hand....

When we learned my son had PANDAS and I found PANS/PANDAS support groups on the internet, I heard about several kids in a family having the same disease. More than one child with it? I was aghast. I really didn't know that I could handle that and it shook me up. My son was so very sick--raging daily, sometimes hourly. I'd hold him. How could I put up with more than him? There were days I wondered if he would live; he was in so much neurological and emotional pain. On more than one occasion, we slept with him in the middle of our bed just to keep an eye on him. Or an arm. He didn't want to live. He'd wander outside in the middle of the night. I know that we saved his life, with the help of some wonderful doctors.

There's lots of talk of suicide going on lately. A few weeks ago, a lovely young woman suffering from Lyme Disease--really, truly suffering--in pain and without job, money, resources--took her life into her hands and walked in front of an oncoming train.  And then, last week, Robin Williams.... I read an excellent blog that argued that Robin Williams didn't kill himself; the disease did. And I agree. We need to differentiate between the neurological disease (which I prefer to mental disease) and the person himself. 

I'd be lying if I said I never contemplated life--and ending it--in the past few years. There were days that I felt that life was so hard, so cruel, that I wondered what our purpose is--why the heck are we here? All I could see was this dense, gray fog in front of my future. Sick family. Forgetting things. Financial hell. More pain to come.

However, I will do anything for my children, and although that would include taking a bullet to save them, it also includes doing everything I can to always be with them, supporting them, maybe someday babysitting their own children. I would never, ever leave my babies, no matter how old they are.

Bicycle riding brings joy into my life. Even though it also brings more back pain! So I rode and I rode, usually with a friend, and I laughed. And started seeing the blue skies of the world again. It was a long, cold winter (5 years of my son being sick,) but now it's summer. With an Arctic chill.

Last month, as I lay on my bed (as per usual,) feeling sick to my stomach, anxious in a Lyme way that's not me at all, my hip and back in pain, unable to stay awake, something occurred to me: my contemplation of life and death and scoliosis is a first-world problem. I'm not depressed. I don't have something neurological that is making me want to end the pain in my life. The Lyme in my body has caused some neurological issues--where did I put my glasses? What was I talking about?

About face. Mind wipe.

Oh yeah. I want the pain in my life to end and I'm taking every step, every doctor appointment to make that happen. I can't lie about moping, although I do wonder about the state of the world. I worry about the spreading of Lyme Disease (do they really think it's only 300,000 people a year getting this? I see Lyme everywhere now!) I worry about cures for Lyme and for PANDAS. I worry about being Jewish and hunted down, as is happening in all corners of the world, including Florida and New Jersey. I worry about ISIS and Hamas and about a friend's son who is joing the Marines--where will he end up?

And, worrying like this and bicycling with friends? I have a life. I have love, friends, doctors. So I've got disc bulges in my spine. So I've got an IVIG bill to pay off. So I've gotta go back to a job I actually love in a week when I'd rather be home bicycling and napping and being with my kids. So what?

Two weeks ago, I began for Bartonella now and my anxiety vanished. I think my doctor's a magician. I also think the mincocycline I was on before this gave me one huge herx.

So, there are 2 members of the family on antibiotics. There were three in the bed and the little one said...

Roll over! Now there are 3 of us on antibiotics and only one of us NOT.

My daughter was supposed to be the "well" child. When she tested CDC positive for Lyme, we opted to treat her more naturally, to avoid antibiotics which can affect her gut and immune system. How'd that work out for us? Well, she ain't doing so well anymore. The tables have turned. I had to remind my son that her "behaviors" are symptoms, that she is actually sick (as he was,) and to be patient with her.

Please don't judge my child, I want to shout to the world! For unlike my son, she does not contain her symptoms to just home. She is who she is and it all comes tumbling out. She's got a fiery, joyful personality--she's that girl with the curl in the middle of her forehead. And when she's feeling bad, it's really horrid. Although, nowhere as horrid as the worst times with our son. She's a drummer, she's a My Chemical Romance fan, she's a girl who can't wait to dye her hair (and has done a streak.) And she's 11. She's also the most cuddly monkey with the exception of my son, who can be just as affectionate.

Last night, for the umpteenth night (not in a row,) she could not fall asleep in her room, even with the family dog. She's afraid someone will break in.

There we go. Symptoms: Air hunger. Intrusive thoughts. Some little quirky tics. Separation anxiety. Auditory processing disorder. Some excecutive functioning issues. Handwriting. 

When she was born, my husband and I were surprised at how much she would sweat at night. We kept her in a onesie. At only 2 weeks old, she caught a fever and landed in the hospital for a weekend. They found nothing and I didn't know yet to ask for copies of all labs. Or SPINAL taps. I requested them this summer and should be receiving them in a couple of weeks. They had to dig them out of archives. I wonder if they ever tested for Lyme. Or Babesia.

So they all rolled over and one fell out. There was 1 in the bed... so far, my husband thinks he's free of Lyme. I'm not so sure but he's strong and we need him just as he is.

I do know that I've changed from that frightened mom I was a few years ago. I can manage two sick children. Not perfectly. Plus I'm fortunate that as my daughter's symptoms are worsening, my son is doing better. She starts antibiotics tomorrow morning for the first time. 

I'm not going anywhere. I will be a mom to my children for all of their lives, and as good a wife for my husband who deserves so much. I'll be writing my blog and teaching my classes and looking forward to someday having more energy so that I can write the two novels that are living in my head.

Just don't tell me my dog has PANDAS also. 

My dog waits patiently while I blog.

Sunday
Aug102014

Finding Normalcy

Call me Marlin. 

My kids left on a jet plane on Friday. By themselves. Without their parents. And they're kids. Did I say without their parents?

Phil: I had a tough time when my oldest went out on the drop off.
Marlin: They just gotta grow up some--the drop off?! They're going to the drop off?! What-what-what are-what are we, insane?! 

The good news is...they're visiting their grandparents. My son is healthy enough to fly! He's healthy enough to be without his parents (note: one of his PANDAS symptoms was separation anxiety.) The good news is: their grandparents kept apprising me of their status:  "Leaving for the airport now." "At the airport so we can get passes to meet the kids as they get off the plane." "They're here!"

And my two babies who are no longer babies are having a blast! They don't want to come home.

But standing at the airport, handing over the doctor's letters that provide proof that they need to carry all those pills in their carry-on bags (sorted by morning/evening for both, with an icepack for the probiotics and Samento,) I fretted. OMG OMG OMG--what if something happens? What if the germs are cycled through the plane and my son gets sick? He's immune deficient. 

That morning, I sprayed both kids with thieve's oil. I mixed it with the vodka that has sat for more than a year in our downstairs freezer and put it in a spray bottle. My daughter giggles at the idea of having real "alcohol" on her skin. A week before, when my son had a stomach bug, I did this (got the idea from a friend.) I sprayed my son's feet, sprayed my daughter and myself. My husband just laughed and said I was practicing witchcraft. Well, guess which member of the family got sick from my son? It wasn't the dog, either.

DoryHe said it's time to let go. Everything's gonna be alright.
Marlin: How do you know? How do you know that something bad isn't gonna happen?
DoryI
don't...

It took forever to get through "Special Services." I had to write descriptions of both kids and describe the clothes they wore. I had to write my dad's name, address and phone number. It took a very long time and all I could feel was gratitude for the thoroughness of Delta Airlines. They would look out for my chickadees.

And then, before we knew it, we hugged good-bye. The kids walked, grinning, to the door toward the plane and were gone from our sight.

At 10:35 AM, we were driving out of the airport. It was the time the plane was supposed to take off. We reminded ourselves that flying is safer than driving. I prayed my daughter wouldn't have to use the vomit bag.

The first day, they swam all afternoon. And swam again after dinner. My 11-year old daughter helped make dinner. And at 11:00 PM, the phone rang. "Hi Mommy, it's me, ..." (and she always gives her name as if I don't know who it is.) "I miss you so so so much!" And there were some tears.

Well, last year, she went to sleepover camp for the first time. It was an amazing respite from the agony of dealing with an older, sick brother. She told us she was homesick but later recanted, saying she only told us that to make us feel good. 

This year, she happily returned to sleepover camp for two weeks and truly was homesick. Her brother is in a great place, it's the best summer our family has had in years upon years (except for my own horrible chronic fatigue, sudden anxiety mixed with gut pains in July, but I changed antibiotics to treat for bartonella and am not quite so tired or sick now, and, of course, there are my daughter's babesia symptoms.) But the glass is half-full now. It's a freaking five years and we're finally doing fine. Relatively speaking.

I knew she'd get over it. She had grandparents to nurture her there. And sure enough, the next day, we hardly heard from the kids at all. 

I let them have that space. I knew they were happy, loved and secure.

So, what'd hubby and me do? Throw a small party!

In a few days, we'll return to the airport, an hour early, to sign in and meet them as they get off the plane. They will be different children from the ones who left. This is the first time my son has ever been away from home for an extended time...with the exception of a hospital stay when he was 9 years old, a hospital stay that should never have happened, a hospital stay for a boy whose doctors couldn't figure out what was wrong with him. And a hospital that only permitted parental visits for two hours each day.

Now he's away. He's confident. We face-timed with the kids this morning and they were silly. They told us they had one argument and it was really a misunderstanding and they made up. Wow.

Marlin: I promised I'd never let anything happen to him.
Dory:  Hmm. That's a funny thing to promise.
Marlin: What?
Dory: Well, you can't never let anything happen to him. Then nothing would ever happen to him. Not much fun for little Harpo.

They're definitely having fun.

 

Wednesday
Jul232014

MRIs and Memories...A PANDAS and Lyme Blog

I lay down on the table, fit my head into the slot. The lab tech drapes a warm sheet across my legs, gives me earplugs, then fits something cushiony over them to further cover my ears. The table slides, spaceship-like, into the cave, pulling me backwards. I stare up into a way too-close wall and close my eyes.

The knocks are deafening, resounding. Beeps go off, then the sound of someone softly sneezing again again again again. Silence. I make up stories in my head to ward off the claustrophobia and remind myself that the room is cold; I can feel the air on my bare feet that stick out from the blanket. I can breathe. I wonder, annoyed, why I don't have headphones and music as I once had previously when getting an MRI in a different location. I think about being on my bicycle, sunny days cycling with friends, talking, adding miles onto my odometer. I'm here because I want to continue cycling. Because I want to figure out how to end or at least manage the pain.

I'd been in this room before. I'd suffered these loud knocks and beeps with tiny earplugs that kept popping out, felt the vibrations of the beast as it tried to determine a medical quandary. Instead of lying on the table, I'd stood by it, holding the foot of my little son as he laid unmoving on the table so he would know I was still there for him.

Four years ago, my son received an MRI for his brain. Something was terribly wrong with my 8-almost-9 year old. Was it--a tumor? Our happy-go-lucky boy was suddenly full of tics, horrible thoughts, nightmares, even when awake. He was sleep-walking, angry, ripping things up and writing on toys. He tried to hurt himself. We had to hide all the knives and scissors in the house. What had possessed our child? 

The MRI provided no clues. We put the little guy through a couple of 24-hour EEGs that gave us no information. We tried; the doctors didn't know much, and we got no answers. PANDAS and Lyme often don't leave those types of footprints. 

He was in 3rd grade that year and since a diagnosis couldn't be made, and his life was in danger, he was eventually prescribed antidepressants and mood stabilizers. He gained 6 pounds in a month and we shifted his diet to more protein and low-sugar, which stabilized his weight. He had always been a thin, muscular little bicycle rider. He was the kid who rode 20 miles with his dad when he was 6.

In fourth grade, he cut his hand with scissors. The meds were not working although we had changed some, increased others. In fact, I had a feeling they were getting in the way of his thinking. We consulted more doctors, hospitals. There were no answers for us. A neuropsychologist met with him over several days and told us that he was depressed because he had a low IQ and couldn't meet our academic expectations. "But he read all of The Chronicles of Narnia at the age of 9--himself!" I protested; "I KNOW he's very smart!" The school psychologist agreed with me.

No one we saw knew to test for Lyme correctly. There had been one Lyme test done, LabCorp or Quest. Band 41 showed up. This wasn't enough to provoke a re-test or further examination.

Not one of the many doctors with whom we worked--pediatrician, neurologist, psychologist, psychiatrist, urologist, gastroenterologist--diagnosed PANDAS. Two hospitals missed the diagnosis.

I kept questioning and researching. I knew the doctors were wrong when they blamed our parenting skills or my depression over my son's mysterious illness or the color of the sky at the moment.... "Why do you think you know more than the doctors?" I heard but I persisted. My child's life was at stake. Something neurological was going on; I knew it. I became convinced that my kid had PANDAS.

We eventually ended up with a Best-in-our-County neurologist who also wondered about PANDAS. He put our son on 10 days of amoxicillan (not a high dose) and then concluded that maybe he didn't have PANDAS when we didn't see a change. 

He didn't know about Herxheimer's reactions, that die-off of bacteria can result in a worsening of symptoms. He didn't know about using higher doses of antibiotics for PANDAS. Apparently, he hadn't read Saving Sammy, the Boy Who Caught OCD or studied in depth Dr. Madeleine Cunningham's work (the Cunningham Panel wasn't yet on the market) or Dr. Susan Swedo's research. He didn't know that ten days was not enough. He also didn't look for Lyme Disease.

Fifth grade began and so did our first visits to real PANDAS doctors. More than a year and a half after the sudden onset, more than two years since some random symptoms emerged, my son was finally diagnosed. We saw three different doctors over the course of that year and the diagnosis was confirmed. When antibiotics didn't help, he finally received his first IVIG. During this time we briefly saw a developmental pediatrician in our vicinity who took our insurance but didn't truly understand PANDAS. He got annoyed with my son's behavior in his office.

Six months later, we had a diagnosis of Lyme as well. This led to major Herxheimer's reactions as we began treating without detoxing. He had joint pain but much of his Lyme was neurological. No surprise there, but his horrible reactions to the die-off of bacteria were shocking and life-threatening.

We quit that Lyme doctor after he couldn't help me detox my son and suggested we bring him to ER on a Sunday afternoon. We then tried homeopathy and acupuncture. The acupuncturist was fantastic and could have been a great therapist in addition to her own work. The homeopathy never kicked in and the homeopath believed that antibiotics would compromise the effects of her remedies. We tried an OCD specialist who didn't believe homeopathy would work (it worked totally for a fellow PANDAS parent who started at the same time,) yelled at me for taking notes when we met and told our son that his sister had PANDAS also. Finally, we shifted gears and after a six-month wait, saw the famous Lyme pediatrician Dr. Charles Ray Jones. Added a Lyme psychiatrist. We removed him from the mood stabilizers. His appetite fell off completely; he didn't like his favorite foods anymore. 

Sixth grade. My son broke his arm after a week of school and needed a scribe. He would go to school one day, then have trouble going the next. He never showed any fever or sickness bur constantly raged at home, cried, was not himself. "Mommy, hold me," he'd beg. "I'm gonna have a rage." By November, I had revisited a Lyme social worker for guidance and we pulled our son out of school to be tutored at home. We added one last doctor to the team although we were running up our credit card debt with all the doctor bills. She had come highly recommended.

This doctor was special. In the beginning, we didn't go to her because she doesn't work with insurance. Well, neither did the psychologist, the psychiatrist, the neurologist, the OCD specialist, the homeopath, the Lyme doctor, the acupuncturist....we were running out of money and my husband was working part time so that he could be at home to take care of our son. I was teaching other people's children, and frankly, it was sometimes a vacation to be at work.

After more IVIGs, treatment for Lyme, a diet that eliminated all the food sensitivities, after following every direction given by the integrative pediatrician and trying different remedies for our son's migraines and rages, our son suddenly returned to us. It had been over three years that we'd pretty much lost our little boy.

Over his seventh grade year, he continued to slide up and down, react to any germ that floated his way, any stressor. But he never fell quite as low as he'd been. He was excited to study for his bar Mitzvah and wanted desperately to return to school and his friends.

More and more, like a foot stuck in quicksand, our son began emerging from that dark, gritty place. We kept waiting for him to be sucked back in, but it's been many months and he's with us. A recent IVIG returned him to PANDAS world for a couple of days but he recovered. He estimates that he's about 65% there. We still have a ways to go, if we can hold onto that 65%.

My son gained some weight, lost more weight and is growing. He still wears some of the same clothing he wore a few years ago; nothing is completely linear with him. One of these days, he will go through a large growth spurt and require larger sizes. One of these days, he will be taller than me. Already, he's a stronger bicycle rider who taught himself to unicycle. 

And so I, too, have an MRI at the same place our journey started years ago. I meet with the sports doctor to discuss the pain in my right hip.  I tell her why I'm reluctant to get a steroid shot, that steroids are contraindicated for Lyme and I fear it will make my hip a breeding haven for the spirochetes. She questions my Lyme infection and wonders if it's current. I tell her that the IgGs show it's active right now. It's language doctors understand. And then I tell her just a little about my kids both having Lyme and that yes, it's congenital.

I leave her office, sad that my too-young back is showing arthritis, herniated disks and disk bulges. I come home, and with my husband's urging, make an appointment to get professionally fitted for my bicycle. Something's gotta change--either my handlebars or my bicycle. Because I'm gonna continue bicycling no matter what.

Monday
Jul142014

On Brain Fog and Feeling Like My Kid

I've got brain fog. Oh my G-d. I can't think. Actually, I can, but I have to work extra hard at it and the anxiety over having trouble thinking is getting in my way. Plus, it's all exhausting. Can't I just go back home and nap?

I'm back at work this week, planning curriculum/projects for the school year. I didn't want to go back. I've been home from school for two weeks. The first week was spent going with my son to IVIG and taking care of him after, as well as visiting my own Lyme doctor then taking my own new antibiotics and experiencing my own Herxheimer's reaction. Easy peasy, lemon squeezy, as my daughter used to say.

The second week was spent calling my son's doctors because he wasn't faring well after the IVIG. And bicycle riding. Yep, I'm back on the bike, and when I finally get my butt on that bike seat and start peddling, much of my lethargy takes a back seat (umm...there's no back seat on my bike.)

Sleep has also defined my life lately. I can sleep ten hours. Or more...? I creep out of bed (and do my physical therapy stretches) only because I'm the one who knows how to prep my kids' meds. I don't know if I'd wake up otherwise, until maybe 2 PM. Gosh, I should be simply gorgeous after all that beauty sleep. 

So, this morning, I was miserable and chiding myself to have a better attitude. So WHAT if my stomach's a mess! So WHAT if I had to get up "early" in the summer? So WHAT if I feel like sleeping every half hour? So WHAT if I left my cell phone at home and had to turn around and grab it because I'm LOST LOST LOST without my cell phone, baby!

This is my job and I'm good at it. 

Well, until this morning. I walked in JUST IN TIME. I'm someone who likes to be early. We received a list of everything that we could/should work on, as my colleagues and I are studying problem-based learning writing with a consultant. And then the stress attack began. 

Nobody knew how anxiety-ridden I really was (I think...except the colleague I confided in? But she didn't realize how extreme it was for me because I was smiling as I told her.)

I couldn't even log on to the requisite google doc (neither could others.) The printer wasn't working. I couldn't copy from one google doc to another (which turned out to be not my problem.) I had come with a list of the activities I want to accomplish but even that list was and continues to be overwhelming. I had committed to working 6 days but changed my mind. 

If I don't work all 6 days...and I'm not,  I will still complete these units but I won't be on the clock. I'll do them on my own time instead of earning the money that goes to pay for our Lyme doctors (notice the plural?) In fact, it's evening and I've been googling ideas for my projects. I'm dedicated. I'm just not 100% healthy. 

Happily, I did make it through today, with more direction for a now combined science/social studies unit that will ignite my 5th graders creativity and hopefully help them make great learning connections. Sounds good, yes?  I still feel very air-hungerish over it all. Last year, I was chockful of ideas. Now, I'm a puddle of lowly emotions. 

My son has been through all this for months, maybe years. So many days, I prayed (yeah, I do that sometimes even though I claim to be a nonbeliever): let me be afflicted instead of my son. He's so little. I can handle it.

Well, I guess my vote of confidence in some higher power was heard. I have Lyme also. I have brain fog. I am having trouble with my own executive functioning skills which is really super hard for me because I have always been a great learner and teacher. I'm probably also herxing. I'm trying to whip this Lyme's butt and I really need my summer to do that, because I need to get my thinking-brain back for September.

I'm here to tell you how it feels. Frustrating beyond belief. My thinking feels like frozen molasses sliding from the jar into a bowl--and don't interrupt me because I'll forget my thought. My short-term memory is shot. What did I just write? My short term memory is...you get it. Like I want to shout to the world that I'm having trouble (and it's not normal for me!)

Yet, no one really understands. No one truly cares.  Only others who have Lyme get it. And it hurts that no one really grasps how difficult it is to be a parent of a child who has been ill for so many years. And a parent to another child who shows symptoms. And a parent who is also ill, albeit not that much compared with others. I always compare myself with others. I have no right to feel so sorry for myself!

The good news is that I went for a short bike ride with a friend/colleague right after the 6-hour thinking-hurts-my-body day and it felt wonderful! The road melted under my wheels. We talked, laughed, finished the ride in too-short a time. I came home, took a HOT shower and listened to the thunderstorm, warm, safe and dry.

And the other good news is that my son is thinking again. So maybe I did take the brain fog burden from him. 

Saturday
Jun212014

Fatigue is Busting Out All Over!

A month has skittered by since I've last written. I have had nothing to say. 

No, that's not true. But my brain is just not working well and I have no left-over energy after teaching all week. My name is Lisa and I'm chronically fatigued. There, I've said it. 

The irony is that I'm a pretty good teacher; I can summon up my energy for the classroom. Last year, at one very tired point, I tried to drink caffeinated coffee (caffeine and I do not get along.) Oh, I felt myself to be a witch! I worked so hard to refrain from being mean. That took even more energy!

Another irony is that, after resting all day Saturday, I can hop on my bicycle on Sunday. If I'm with a friend and I have a Gu Energy Gel every hour, I can bicycle 30 miles at an adequate pace. Or I can bicycle 14 miles inside of an hour. I'm free, I'm flying, I'm soaking in the density of the green leaves and the blueness of the sky. But I'm also counting the miles until the ride is done. I'm not enjoying it the way I used to.

Today, I had an hour to ride. Couldn't eat much for breakfast. I raced for the first half hour, felt my heart pounding. And then, I lost my energy. Had the half hour ride back. The culprit is my odometer--with cadence. I admit I'm a little obsessed with tracking myself and I'm very competitive with myself. I could've stopped on the side of the bike path and taken a snooze. Needless to say, my time was not as good as it was last week.

Sigh. I realize that I must sigh a zillion times a day. I wonder if it's a symptom of babesia for me. I do think my sighing is a way to get more air. I have an appointment with my Lyme doctor in a couple of weeks to revisit my treatment (and diagnoses.) This Lyme stuff is pretty sneaky, Sis.

My daughter shows signs of Lyme and co. as well. She was always considered to be the "well child." Now, I stress about her, although she is in no way even 10% as ill as my son ever was. I can look back and see all the signs--her sweaty little infant body, her fever at 2 weeks old (and hospitalization at none other than Westchester Medical Center where a spinal tap was conducted.) If they had any proof of Lyme then, it was never communicated to us. If they even performed a Lyme test. An Igenex test a year ago (positive by CDC standards) and a very recent zytoscan has given us all kinds of necessary information about her.

The GOOD news is that my son, who was terribly sick with PANDAS and Lyme for 4-1/2 years, is now back in school full time.  What's more? He's getting As in math! Math, of all subjects!

Wonder of wonders, miracle of miracles

He LOVES school. LOVES being with his friends. Enjoys learning and likes all his teachers. His math teacher has emailed me a few times to share how well he's doing...and she pulled him out of a class soon after he returned to school to show him the result of his first quiz there--which was outstanding. We really appreciate his math teacher!

Even four months ago, he struggled mightily with math. 

But, my son fatigues by the end of the day. His brain is fried. Yep, I know how he feels nowadays. I've requested that he not receive homework and the school has complied. When he is ready, he will want to do it. I probably have one of the only children in town who actually WANTS to go to school. He WANTS to be a great student. He is proud of having kids ask him how to do math calculations. I know that when he can handle it, he will WANT to do homework! He wants very much to be a "regular kid" and do what everyone else is doing.

He talks about studying and working hard in high school, so he can get good grades, attend a good college and someday become a doctor. I just want him to be enabled, to have choices in life. It's what all parents long for, but it's something we parents of kids with PANDAS and Lyme don't take for granted. Our children may not be empowered. We might not have college funds anymore after using them for medical expenses. Our children's futures are not guaranteed. But, neither are they guaranteed to be negative. At any point in our lives, when we put in the work, good things can happen. 

Right now, my own fatigue is definitely a deterrent. For weeks, maybe months, when home, I've just wanted to lie on my bed and rest. When I'm driving somewhere, I feel this heavy tiredness, like a thick fur coat, settle over me. If I'm walking around, I feel dizzy. It's like I've checked out of my day. My husband has calm, interesting conversations with the kids while I mope about. Well, not exactly mope. But I just don't have the energy for all that. I want to cuddle them, talk to them, but I also just want to be alone.

Leave me alone, leave me alone. I wonder how many people with Lyme feel that way? I clean a little, then lie down. Do some laundry, then lie down. Talk to neighbors or friends, then lie down.

I had mononucleosis when I was 20; I know what it's like to sleep through day/night/day/night. I'm in no way as bad as that. I can push myself to do just about anything. When I was first pregnant with my son, I was nauseated and tired all the time. I'm in better shape than that. Hey, gotta keep it in perspective. But it's depressing and debilitating anyway. And it's not going away. 

I have projects in mind that I'd like to work on, goals I want to accomplish. My work is not done, in school and at home in terms of PANDAS awareness. I'm accomplishing a lot at my job. I promise to do more at home. Someday, I'll write those novels I've planned. Someday.

Last night, I stepped out of the house into our first summer evening of the year. My son was sleeping over the house of a friend; he and his friends had biked back so that he could pick up his things. Two of his friends had bikes attached to wagons or carts--these kids are an interesting, creative bunch. As they bicycled away, I breathed in the cooler air, gazed at the expanse of bluish black sky, the spindly tops of trees, and felt small in this big world.There is so much more life ahead for all of us. There are good days ahead.

Everyone has their own path, their own time frame. For so long, when reading about other people suffering from Lyme, I told myself, "I don't have it badly. I have nothing to complain about. I can walk, bicycle, work." But I do have Lyme. And I feel it daily. As do both of my children. Maybe it's OK, once in a while, to acknowledge that sometimes it's too much for me. My daughter was 6 when our descent into PANDAS hell began; she witnessed it all. My strong drummer-girl, who has compassion for so many people with disabilities, is not totally unscathed. None of us are.

My son's journey into recovery is enough to give all of us hope. There was a time that I didn't think he'd make it. At 8, he was suddenly suicidal. At 11, he didn't want to live. And now, nothing will stop him. Does he still have symptoms? Hell, yes. Is he still on medicines? Absolutely. We will do whatever it takes to get him through. And after all our hard work, and that of the doctors, he's doing well. If it can happen for him, it can happen for anyone. Provided that medical treatment is accessible. 

And that's why I continue to write. To let whomever stumbles upon my website know that it's possible to heal from these medical diseases. To let the world know that these illnesses exist and are not psychiatric. To confirm to myself that there is a greater meaning in life.

*****

One very special person whom I met through the PANDAS/Lyme community is Melissa Kerins. Despite dealing with her own challenges and those of her three children, she has been very active in trying to free Elizabeth Wray from the clutches of Boston Children's Hospital. For many months of Justina Pelletier's captivity at BCH, Melissa organized peaceful marches. She has done so much for our children. Now, it's our turn to give back. Melissa has been diagnosed with cancer. Please help, if you can, through prayer, supportive words or donations.