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

Tuesday
Apr082014

Life's Good, Today

Can I shout, "Wow!"? Or will I jinx everything?

Today, at this moment (and yesterday, and yesterday before that,) my son is in a better place than we have been in for years.

Today, we had a CSE meeting to plan for his re-entry into school, as he's been homebound for a year and a half. My son, now 13, was in the meeting and involved with the planning.

The school offered to shift his schedule around so that he can return for a special (as recommended by doctor and by our advocate, separately,) and then hang around for PE so he can take the bus back home after. As he gets accustomed to school life, we will switch him into an academic class. 

On top of all this, our insurance company has approved IVIG for him and we need to schedule that. 

And, this kid is totally motivated for his bar Mitzvah, practicing every second he gets, singing for me continuously. 

Read our story. We have been through so much grief and despair. I never thought we'd be here.

What resulted in this success?

Who knows? A combination of: IVIGs, fighting the Lyme and co-infections with antibiotics, herbals, etc., a restrictive diet, anti-inflammatories, antivirals, pulling my son out of school to minimize infections so he could begin to heal, brilliant doctors who understand PANDAS and Lyme.

Tomorrow, you might find me belly-punched and crying. I know how all of this can simply disappear overnight. I have friends whose children improved and then sharply declined. I am aware that puberty can have a negative affect on the healing. 

Or maybe not. Maybe puberty can bring with it positive changes.

I think my son is at a better place cognitively than ever before. We have a baseline. We will always strive to get back here.

Is he symptom-free? Hell no. Tics, OCD are constant companions. He has some joint pain, sleep issues occasionally, etc. But no rages. No depression. I can live with this child in this condition. And he can live with himself. He's happy and excited by life again.

So, this is my message: If your child is struggling, there's hope. If you're struggling, believe. Hold onto my hand and we will pull each other along. We will get there together. 

 

Wednesday
Mar192014

A Strange New World


When you read about a child with a different disease, why is it so difficult to relate? When many hear about family or friends with Lyme Disease, PANDAS, autism, genetic issues, why do we suddenly fall into groups of "us" and "them"? Most people are filled with compassion, yet an invisible wall stands in the way of true understanding. Sometimes this wall fades in time, sometimes it leads to the ends of friendships and other times it leads to friends or family becoming aggravated with not the disease itself but the person who bears the illness (or the person's family.)

There was a time when, if I heard about Lyme Disease, I never thought about all those years that I spent playing in the woods. Because I learned about Lyme Disease later, I didn't think that the ticks could be bearing this bacteria when I was a child. (Oh, they were!) I saw Lyme Disease as something that a few unlucky friends were forced to endure. Going through this experience as a parent of a child with a disease, and then, as a patient myself has led me to wonder about the manner in which we classify our environment. I listened, perhaps with half an ear, but I didn't really hear. Until it hit home.

A wise educational consultant I know preaches about cognitive dissonance as an effective and necessary provocation to learning and change. Without questioning our beliefs, we stay stagnant. 

But change is so hard! When I was in my twenties, one of my good friends got married and had her first child. Suddenly, my phone calls to her were chorused by wails and baby chirpings and her murmurs of, "Just a moment." I couldn't have a decent conversation with her...not like I used to! What a pain in the butt it was that she had a freakin' baby!

Then I had my own child. I entered into that mystical world only to find myself reamed by one "friend" who quite voraciously demanded to know why I hadn't returned her phone calls ASAP. I had changed and this friend didn't like it one bit.

When I was 18 and away at college, I begged to intern at a shelter for abused women and their children. My own parents were going through a tumultuous divorce (no violence.) I was fresh out of a suburban town, very niave and extremely ambitious. Hence, I was totally in-over-my-head at the shelter. Women from all walks of life came. I remember cutting open huge blocks of government cheddar cheese there (this was before the Costcos and Sam's Clubs) and this alone startled me enough to make me detest cheddar cheese for a while.

I was terrified. We worked out of an ordinary house on an ordinary street but the husbands and boyfriends of these women were far from ordinary and I was so afraid that one would hunt us down with a gun. I had barely experienced relationships and I really couldn't relate much to these women. So I worked with their kids and helped set up a playroom. It wasn't my first experience working with a population that would make me uncomfortable. It wouldn't be the last.

Do we truly need discomfort to learn? To grow? To see the world in a more enlightened way? 

Years later, when I returned to school for the umpteenth degree, I worked in inner-city Bronx, teaching second graders. I loved the children but the environment was a shock for me. I had grown up in green, woodsy, safe suburbs. To get to this school, I had to take the #2 subway to a stop that was about 4 flights of stone-walled stairs below ground. I emerged from the subway into a dungeon and climbed out, only to enter a neighborhood seldom seen by most of the world. The teachers always left school at 3:00, with the students, because the area wasn't safe. For evening parent conferences, those of who who lived in Manhattan had to hire a car to pick us up because taxis wouldn't drive the streets at night.

The 2nd graders told stories...of guns, knife fights, drugs. They had seen too much--much more than I had. This was an entirely new world to me. Yet despite the fact that they already knew that condoms could protect people from AIDS (I did NOT ask them for this information,) they retained a childhood wonder of the world. One little boy, Nathaniel, wanted to be president of the United States some day. He was very good with math but struggled with reading. He hadn't been born here in the USA but I wasn't going to be the one to destroy that dream. 

Before working with these children, I only tangentially knew that these worlds existed. I hadn't lived it, seen it every day, breathed it. Even when I worked in the Bronx, I'd take the subway back to my Village apartment or go out for a drink with friends on the Upper East Side. But more often, I'd go home to reflect on my teaching or mostly, to worry about the children. Jason, whose mother favored his sister and whose father was in prison. Catese, whose mom worked hard to build a better life for themselves. That little boy with the huge brown eyes who missed so much school. The one who'd do something mean the moment I turned my back. Little Keisha, whose mom had died, whom I dreamed about adopting until I heard that her grandmother would formally adopt her. 

Living in this world helped me to understand it better. I was no longer a complete outsider. I had come to see the beauty in children who grew as wild roses between cracks in the sidewalks. I let myself love them. I let myself change. My compassion for children growing up in inner cities bloomed. And my admiration for people who survive these challenging environments increased with understanding.

Those of us who experience PANDAS and Lyme are catapulted into a place of cognitive dissonance. Our children are suddenly not acting like children should. Overnight, their personalities disappear. They might be suicidal...at the age of 8. We deny it at first, think that they're just going through a stage. We fear that they've been sexually assaulted. Finally, we realize that this dis-ease of the mind is not going away and we start to accept that drugs are necessary to save their lives. Some of us hospitalize our children. Doctors look backwards into the family genealogy in a hunt for mental disease (and hey, there's always some.)

Once we have come this far, and the drugs are not working, we learn to question doctors who cannot find answers, doctors who blame parents for not giving enough consequences or for being too lenient or loving, doctors who get angry because they can't figure out why the meds they prescribe don't work. Despite the naysayers who tell us to avoid the internet, we parents research the symptoms. And eventually, we find others like ourselves.

Those of us who have first-hand experiences with hard-to-diagnose diseases have pretty much fallen down rabbit-holes. We are forced to deal with conflicting beliefs such as: do most doctors really know every childhood disease that afflicts our kids?  Are vaccines good or bad? Can Lyme truly be cured with 3 weeks of doxycycline (minocycline for children?) 

No. No. No. Those of you who have not slid down the rabbit-hole probably still believe in doctors knowing so very much, still believe that the pharmaceutical industry is here to protect us, still believe that Lyme only happens to people who hike and garden in New England. You know what? It feels so good to be able to trust in doctors. So good that I kept on searching until I found doctors who are experts on PANDAS and Lyme. 

I have spent countless nights reading and reading--grappling with my ignorance, striving to understand concepts that have seemed and continue to seem beyond me. I still don't completely get methylation, parasitism (not sure we have to deal with that here--my kids are both OK on full moons, but I could be wrong,) mast cells, etc. I was a psych major, not a biology major. Learning all this is more than cognitive dissonance for me--it's cognitively overwhelming!

If I'm living in the rabbit-hole, the best way to help myself is to map it out. That's what I do. That's what all the parents with whom I'm in touch spend their time doing. 

Those of you who are above ground often deal with a different rabbit-hole, one I don't completely understand. We all have different issues with which we contend. If we're in each other's lives, it would be ever so lovely if we could share our experiences and express mutual admiration for our survival skills. If that's not possible, we must refrain from knocking each other down, from separating into "us" and "them" categories, from criticizing each other. In many ways, we are in the dark ages; there is so much that we really don't know about the brain, disease, the world. 

Try on a little cognitive dissonance today. Feel uncomfortable just a little as you learn something new. Maybe both you and the world will be better for it.

Monday
Mar032014

Ramblings of a Grateful Mama

"What would you think if I sang out of tune
Would you stand up and walk out on me?
Lend me your ears and I'll sing you a song
And I'll try not to sing out of key
Oh I get by with a little help from my friends
Mm I get high with a little help from my friends
Mm going to try with a little help from my friends...." (Beatles)

I'm feeling grateful and it's not even Thanksgiving. I'm singing outa key lately (figuratively. I've still got it when it comes to singing. I think.) I walk around with weird headaches in which I feel like my brains are swimming in my head, as if my head is one large snow globe. My hair hurts constantly as if I've worn my hair up in a ponytail for far too long. And my friends listen. Commiserate. What would I do without my best friends, people in and out of the PANDAS support groups? I'm very lucky.

My children's birthdays are this month. My son will be a teenager--tomorrow! His bar Mitzvah is two months away, planned for warmer weather (hey, he was born in the middle of a snowstorm.) Amazingly, for one who stresses when his dad and I organize his schoolwork, the kid is self-motivated and practicing for the big day. And I? I wonder how to tell everyone to step the back up--don't hug my kid--don't get your germsy, snivelly faces next to his. Nice, huh? But really, that will be one crazy weekend. We're letting him eat anything (i.e. gluten and dairy) so long as it's Kosher. We're letting him into the midst of a crowd. Oy. What will the following week be like? PANDASville?

Got two more exciting months to plan. Sometimes the fun is in the waiting. The writing down of songs to be played. Receiving invitation responses. Going shopping for my daughter's dress with a wonderful friend who asked for the honor of purchasing it for her.

My daughter's birthday is in three weeks. She asked for a sleep over party this year. And because my son isn't raging nightly anymore, we can do it. But then, her guest list grew to 10 girls. From PANDASville to PANICville. I teach ten year old kids all day long. I don't think I can handle a house of ten 10 and 11 year olds all night also. So, we changed the scope of the party and she's happy. Happy! Yay! I aim to please, especially when I feel that so much attention goes to the sicker child sometimes. Mama-guilt is potent. All the same, I felt the need to write on the invitations that a member of the family is immune-deficient; please contact us. In other words, if your kid has a cold, we won't be watching Pitch Perfect. We'll be experiencing Invasion of the Body Snatchers

I adore my kids. When I had the flu a couple of weeks ago, they both ran up and down stairs, making and carting up tea for me. I have to admit--I'm more accustomed to my daughter in that role, but my son took it upon himself as well. Karma. He's giving back. He has so incredibly much potential, I know, and I hope he recovers enough to tap into it. 

Still trying to get him another IVIG. He's so raw, so fragile, in the big wide world that's full of germs. And stress. He succumbs to stress in seconds. Some of that is the Lyme, I know, now. Because I feel it, too. I understand my kid better. But it doesn't mean he gets a free ticket. He's going to have to handle that little bit of extra stress and just keep going. 

We begin homeopathy for my daughter this month. I am now nervous about any medication/remedy as I've personally experienced herxing. Still, to NOT treat active Lyme is worse. Family members have questioned me about Lyme, not yet understanding that neglected Lyme can spiral out of control (pun intended--spiral--spirochete--get it?) and cause heart disease and a lot more. 

On a not-so-funny note, when I was recovering from the flu and had a determined barking cough, I took cough medicine, then the hottest epsom salt/bubble bath ever. It was the first "Calgon, take me away bath" I've ever had (usually I'm bored in the bath and wishing for a hot shower.) I could breathe, my body aches disappeared, I nearly fell asleep. I got out of the tub, wrapped myself in a towel and...woke up when I hit the floor. So, here's the ironic thing: I'd been walking around so brain foggy. Well, I think I knocked some sense into my head! (Or maybe it was the bath that caused me to herx and detox?) Who knows? I am very grateful for my husband being there to peel me off the floor! And I'm fine...truly fine. But I learned my lesson. Avoid anything with codeine. Drink water before a hot bath. Try not to get sick.

On the positive side, epsom salt baths have been helping my son with joint pains--yes! Something that works--and, he's learning that it works. 

So, enough rambling. It's a new year, in a sense, as both my kids were born in the month of March. My godmother was born in March. Spring comes in March. Winter is nearly out the door. My Lyme is here to stay for a while and I'm learning to deal with it, albeit furiously. 

And I'm getting by because of the friends who have been in my life for a long time as well as some friends I've only met via the internet. So perhaps someone or some higher power is looking out for me still.  And perhaps there is more for me to do in this life as well.

Sunday
Feb162014

The Steps of Admitting LYME

Hi, my name is Lisa and I have Lyme Disease. Yeah, it's taken me a while to admit it, especially to myself, but I'm ready to come clean. I have Lyme Disease and it's affecting me. I hate it. I don't want it but it's here, living in my head and body, all the same. I cannot change this fact.

Step 1: I have Lyme Disease. I am sick from it. You might not be able to tell when I don't feel well because I look just like myself. No broken bones. No needles in my skin. And I plaster on a smile and do my job during the day. Only my husband and kids know that when I come home from work, I have to be horizontal. It's rather a family joke now. "Mommy's going to lie down on her bed."

Step 2: If I treat this little devil inside me, I can get better. I believe that my Lyme doctor can help me, for today. There are many alternatives, from antibiotics to natural remedies, to homeopathy. I know that I need to hit the Lyme on all its levels: from biofilms to round bodies to spirochetes. I cannot do this alone.

Step 3: I believe in the Lyme groups, the people who suffer or have suffered from Lyme, who have come before me, who will come after me, who have researched Lyme and know more than most doctors or the CDC or the Infectious Disease Society. I believe that a Lyme Literate doctor can help. I believe that I can get support from other caring, infected people. Thee CDC now admits that there are at least 300,000 newly infected people every year. And those are only the ones they know about and acknowledge. I believe in people like Dr. Eva Sapi who continues to make discoveries about this disease, even though she herself has suffered from Lyme. I believe in the people who march in Lyme parades, who work to bring about awareness, research, change.

Step 4: Thinking back over my life, I've probably had Lyme for quite some time. Perhaps I got it when I was bitten by ticks, growing up in Connecticut woods. Oh, how I loved all those tree forts we built. I didn't love having to go to the doctor to get an embedded tick out from the back of my head when I was a young teenager. Could that have been THE tick? Who knows? I was pretty healthy, growing up. Strong immune system. I did have mononucleosis when I was 20 and had to drop out of college for a semester. I was always tired when I was in my 20s. And 30s. And 40s. But then, I did too much, or so I was told. Both my kids have Lyme. Did I inadvertently bequeath it to them when I was pregnant? If it weren't for my kids, I wouldn't have had myself tested. Or rather, I wouldn't have found a doctor who would test me with Igenex. I was already trying to figure out why I had bouts of lethargy.

Step 5: I admit that I've often told myself that I'm not as sick as others. And I'm not. There are people in wheel-chairs, people with heart attacks, women losing hair from Lyme Disease. People who can't get out of bed, who cannot hold a job anymore.

But that doesn't mean that I don't feel Lyme Disease attacking my body. I'm dizzy, tired, headachy. Brain foggy. I think it's affected my autonomic nervous system, unfortunately. I put on a face for the world, then worry that my husband is carrying too much of the home responsibility sometimes. Because my son has been sick for so long, many people just believe I have post-traumatic stress. They don't realize how Lyme insidiously creeps into a person's body and mind. I particularly resent the brain fog. Headaches are bad but I want to be able to think clearly. I have trouble remembering things sometimes.  I'm scared of getting Lyme-induced Alzheimer's. I am my mind. I need my mind.

I admit that I don't yet know if I have co-infections. 

Step 6: I am ready to get this Lyme out of me, to the best of my ability, knowing that I will probably never completely be Lyme-free. I need to get my body stronger again, so that my immune system can keep these spirochetes in check. I have given up gluten. I take all kinds of supplements and medications. I spend way too much money on pills and not enough on clothes, vacations, dates with my husband. With several ill people in one family, we spend upwards of $20,000 a year in medical bills (not covered by insurance.) I know I SHOULD give up sugar. Perhaps give up dairy. Maybe in time. I do exercise (bicycle--yes!) when I can.

Step 7: I need to live in acceptance, to embrace the fact that I have Lyme Disease, so that I can move on with my life and not fight the fact that I have it. To help deal with my son's PANDAS and Lyme, I began to blog, never knowing at the time that I also had Lyme. In fact, I remember when we went for my son's first IVIG. I met a few other moms of kids with PANDAS. Oh, how exciting that was! I reveled in the fact that I wasn't alone, that others intrinsically understood all we were enduring. These women spoke about Lyme rages and Bartonella. I was still getting used to PANDAS-World. It would take another few months for us to learn that my son belonged also to this once-foreign Lyme kingdom. 

Step 8: As I continue my Lyme recovery-journey, I will try to aid as many others as possible, try to increase awareness of Lyme Disease (and PANDAS, that NOT rare "rare" disease.) I will do my best to ensure that others around me have more information than I did, that others do not have to wait as long as we did to find answers and healing. I will do my best to provide support when needed.

My name is Lisa and I have Lyme Disease.

 

For a great blog (not mine) see: http://lymelessandlovely.blogspot.com/2014/01/top-10-things-to-know-when-someone-in.html

Wednesday
Feb052014

How Far We've Come

It's a heavily-white day with snow snuggling the tree branches. My home is warm and my dog is moaning. Not one frisky squirrel to bark at today. 

My daughter complains about having to do her homework by 3:00: "Stop torturing me! I'm just a little girl." She tries to get out of it by napping. My son is way too silly. Is he bored or is it a lingering virus in the air? Or both? In fact, the two of them just brought me my iPhone and told me to say hello to Siri. When I did so, Siri answered, "Hello, Lisa Chickenhead." Those kids.

How far we've come in four years. Wow.

Four years ago, my son had a sudden onset of tics and intrusive thoughts that should have keyed any medical practitioner in to the fact that he had PANDAS. But the doctors were clueless, my husband was sick and we thought it was some kind of reaction to the stress in the house. My son never showed any strep symptoms although my daughter had been treated for it. In fact, I think perhaps my husband had it that year as well, or maybe it was the year after that she and he kept passing it back and forth without my son ever showing any medical symptoms himself.

The problem is that it took nearly two years to figure out that my son did not have Tourette's or Bipolar disorder or anything that could be helped with SSRIs. He did not suddenly have ADHD and OCD and depression. He did not have a manipulative personality or a low IQ--all possible diagnoses as told to us by different doctors.

It took two years for us to get a diagnosis of PANDAS. And another 7 months for the diagnosis of Lyme.

In those two years, we tried cognitive behavior therapy, regular therapy, all kinds of medications, behavior plans, consequences for bad behaviors and so much more. In those two years, my husband and I questioned our marriage and our small daughter suffered from anxiety. In those two years, my son did not get much schooling. In fact, he could barely read.

At one point, we took him to a neuropsychologist who thought he was depressed because he couldn't meet our expectations because of a lack of intelligence. He was heavily on medication which seemed, to me, to be interfering with the way his brain was functioning. He was walking in his sleep. To my medically-under-educated mind, it seemed neurological. Why didn't the neurologist see that?

Now, my nearly 13-year old son is reading Schindler's List. He's already plowed his way through the Hunger Games and the Divergent series. Low IQ, my foot. He's even writing a novel, he claims. From what I've seen of other kids with PANDAS, it would seem that this disease preys upon children with high IQs. And divergent thinkers as well. Kids who have a high sense of right and wrong, who care about others and care about the world. Out-of-the-box thinkers. 

So, what are we doing for these kids? Getting them the help they need? Antibiotics, IVIGs, whatever else is required? No.

IVIGs are hard to come by. Insurance companies don't want to pay for expensive treatments for "rare diseases" that haven't been researched nearly enough. Even if the facts show that these treatments help.

The CDC doesn't even yet recognize chronic Lyme Disease. What am I thinking? Of course we're not yet helping our children!

If PANDAS is mismanaged in our health system, our children will be given the wrong medication and will end up with long-term mental health issues. If PANDAS is caught early, these kids have abilities and talents that can make our world a better place. If PANDAS/PANS can be managed, our children will have lives and will not be dependent. My son can be a writer, a doctor or scientist, a teacher, a therapist, a role model.

If PANDAS is mismanaged, our country will spend a lot of money for a lot of people. This goes for Lyme Disease as well. Children with Lyme Disease are treated for autism, for bipolar disorder, for anorexia. As a nation that is studying the brain, we need to learn to first look into the medical for any problems that are perceived to be a result of mental health. 

Had my son been born when I was a child, he would have ended up in a mental hospital. PANDAS is that new. Lyme Disease is that new, at least to researchers. Had my son been given different parents who didn't question doctors, my son would have ended up in a mental hospital. Had my son not met the right doctors two years ago, he would have ended up in a mental hospital. 

How fortunate we are despite our misfortune. 

"OMG! That thing on his door looks so sick!" exclaims my daughter about the blanket I hung up over her brother's door to cover the hole he put into it a couple of years back.

"What?" I demand. "That's not nice."

"Sick means good," she explains. "It's slang."

Oh. Sick is good, huh?

Yep, just another "boring" snow day. Boring is...soooooo good.