I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

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
Feb182015

Why Do Bad Things Happen to Good Kids?

Why do bad things happen? And why to children? My boy is getting older and when he's migraine-y (that should be a word) as he was a few weeks ago and unable to hang out with friends, go to school, be a "regular" guy, he starts questioning religion and life: What is the purpose of us being here when life is so filled with negativity? Mom, do you believe in G-d, because I don't. Don't you think life is hard? What if I'm paying now because I'm going to be a bad guy later in life?

Oh, gee whiz--and my thoughts go instantly to all those "bad" guys who people say could have had PANDAS and Lyme. Bad thoughts, bad; go away! This is my little boy we're talking about and he has a conscience and a half.

A conscience that would make him take himself out if his thoughts ever got too bad, a conscience that makes him want to be either a police officer, a scientist, a doctor or an investment banker (well, no conscience there, perhaps) when he's feeling good. 

But really! What is wrong with this world that a little, innocent boy needs to wonder why he's paying for something so monstrous? The child has been sick for over five years already. Sure, he's shown improvement. He's back in school after being homebound for 18 months. He's earning high grades. But it all comes at a price--and that take-a-breath apprehension of wondering what's around the next corner? That next corner could be Saturday. Or next year. Or in three years. Or tonight at 1:09 AM. 

On a support group site recently, a mom wrote about that tale, "Welcome to Holland." For those of you who don't know, it's a parable about a parent planning to a trip to Italy, but the person ends up going to Holland instead and needs to change expectations. In other words, our kids are not always exactly what we expect, especially if there are some disabilities involved. Well, the parent on this support group wanted to know what you do when instead of "Welcome to Holland," the story line reads, "Welcome to North Korea." I can't give her credit here because support groups are anonymous, but I totally get it. Yes, I do.

When I was in my twenties and going through a rough patch, I read, "When Bad Things Happen to Good People". Perhaps it's time to read it again. All I recall is that the book gave me some level of comfort. And while life at the time was rough for me, it did get better. Because I worked my butt off to make it better. I made some big decisions, I made some changes, and I was able to take control of my life.

You can't always do that when confronted by a disease. DISEASE is a formidable challenge. It's not like a life decision that I can take responsibility for. It's not like a life direction that I can alter. I can't leap over this obstacle or veer into a different direction. I have to head straight through--deal with the dirt, the slime, the gruesome--there's no turning back. No re-do's. Because it comes from the outside. We didn't ask for it, but heck, plenty of adversity is all around us. People don't ask for bad things to happen.

So the conclusion is that the world is not kind. It's not a game. It's not all trips to the beach, white picket fences, romantic dinners or long bicycle rides, although these are the events that make it liveable. "The World is a Vampire," sings The Smashing Pumpkins. It's out to get you. If you let it. 

The last book I need to re-read is Viktor Frankl's book, Man's Search for Meaning, a book my mom gave me many eons ago. A book that might just have more significance now. Maybe I still have it in my book shelves. Maybe I need to acquire a new copy. I definitely need to begin living by it, and I need to teach my son to do the same.

“When we are no longer able to change a situation, we are challenged to change ourselves.” 
― Viktor E. FranklMan's Search for Meaning

 

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” 
― Viktor E. FranklMan's Search for Meaning
Saturday
Feb072015

Lyme Disease Challenge 2015

I haven't been blogging much because I've been involved with the upcoming Lyme Disease Challenge which is launching March 1, 2015! Click on the lime to check out our brand new website! #LymeDiseaseChallenge is now on twitter, Facebook, Pinterest, Instagram and Tumblr! 

!

 

Wednesday
Dec312014

Finding ME

It's New Year's Eve.

Eighteen years ago, I was in Times Square in New York City with my date, a friend of mine and a friend of his, braving below freezing temperatures to watch the ball--ooh--wow--drop. Seventeen years ago, I was in Madrid, eating 12 grapes from a cup, wearing a tinsel wig and sporting a brand new engagement ring, courtesy of that date-turned-beloved fiance. 

Tonight, we stayed home with our kids, played Apples to Apples and weathered a couple of temper tantrums. I cooked homemade French hot chocolate (oh, way too rich) and drank it two hours after taking my last daily doxycycline. I avoided alcohol because I just took Tindamax yesterday. What a sorry thing with Lyme I am!

January of 2015 will mark five years that my son has been very ill. I am happy to report that he's in much better shape today than he was even last year, or the year before that. It's been five years of trauma, post-traumatic stress, diagnoses for him and diagnoses for my daughter and me as well. Surprise, surprise! You've got Lyme! 

Pre-kids, I traveled, I sang, I performed in community musical theater productions, bicycled all weekend long, went to movies, restaurants, parties. Everything changed with kids. Pre-PANDAS, we took some vacations, sang and danced at home, bicycled with my husband toting the kids in a trailer, went out for bagels Sunday mornings. 

It all changed with illness. The activities, the financial situation, even the bagels.

I changed, too.

I'm no longer fun.

First of all, I'm tired much of the time. I'm not as spontaneous as I once was. I'm very absorbed with dis-ease. I'm stressed, G-d, am I stressed. I try to hide it, though. 

My kids claim I talk about PANDAS and Lyme ALL THE TIME. I don't, I swear. Seriously, I don't know what else to talk about, though. And when friends find a tick on someone, it's me they call for advice. Hey, it's not like I can talk about our recent vacation to...oh, that's right. That vacation didn't happen as we had too many medical bills. Oops. I didn't go clothes shopping although I really need something new. Had to buy those supplements off Amazon instead. Hey--Amazon Prime--they ship it out in 2 days. 

My son is stable but symptomatic and immune deficient. My daughter is pubescent and Lyme/co-infection ridden. We struggle to make mortgage payments. My dog is happy. It's 2015. Hey, there's no better time for me to find myself again. 

So who the heck am I? I'm not the same person I was 17 years ago, and just a quick look in the mirror sure confirms that. I have lines around my eyes when I smile. I have sun spots on my face from those trips in sailboats and from bicycling without sunscreen. I have silver hair competing with my dark brown. The once round cheeks I always hated finally thinned out leaving me looking...older. I'm getting my grandma's hands.

I can't remember any lines from the performances I was in twenty years ago. I can't recall any dance moves. I can't even recall some of the guitar chords from music I learned just five or six years ago. Then again, my memory isn't super-quick as it used to be, although some of that is improving with doxycycline. 

My New Year's resolution is to learn how to deal with long-term (here to stay?) stress and to increase flexibility and repair my right hip...through yoga. I took out a beginner DVD from the library and my daughter and I will do it together. 

Another resolution is to finally complete that young adult novel I started writing when my son was an infant, the one I put on hold for years. I have so many ideas for stories and I love getting lost in tales that others create. Writing is my destiny.

Another resolution is to plan a vacation, no matter that we can't afford it. The kids are 13 and 11. Disease has already cost us precious childhood years. We must make up for missed experiences. Maybe Washington, DC. The Smithsonian is free.

I would like to say that I'll start singing again. This was the first year I didn't bring my guitar to my classroom; my back hurt too much to carry it in its case. It takes a certain amount of energy and happiness to sing and as much as I love teaching, I have very little energy and patience left over when I come home. The strings hurt my now-soft fingers. I have to toughen up again.

My son wants to bike NYC in April. I don't know if I can handle 45 or 50 miles that early in the season unless March is exceptionally mild and I train on weekends. It also depends upon how many spoons I've got. But I long to do this with him, as long as he doesn't leave me in the dust. 

If I could do anything, if money and health were no object, I would travel. I would take dance lessons and horseback riding lessons. I would learn another language. I would write books and see them in hard cover. I would plan vacations with family and friends. I would have weekends in the city and see Broadway shows. I'd have weeks by the beach in a tiny cottage all by myself. I would find someone who loves to play piano just so I could sing show tunes again. I'd have a second honeymoon with my husband.

As parents of chronically ill children, we forget how to dream, how to think of ourselves. We forget that there's so much more to life when our life narrows in to focus on a depressed or raging child. Our life becomes that hole in the wall, the curse word written on the toy, the threat of self-injury, the cognitive decline.

At this time last year, my husband and I were speaking with attorneys. My world was only that wide. A year ago, I could not even dream that I'd be in a calmer place today. 

I am changed by all I've been through. Doing for just myself will never be an option, as I not only have my own children to take care of, but all those others whose parents need help navigating the path through PANDAS, Bartonella, Borrelia and more. I've lost a part of myself, but I've also become stronger and more compassionate. I've met some of the finest people in these family support groups. I've met incredible, courageous doctors. I've learned about a world I didn't know existed. I'm forever changed. Damaged, maybe. But strong enough to begin the search for me again.

Sunday
Dec282014

Designating a Guardian for Children Who Are Ill

The dilemma is: If both parents are incapacitated, who could take over as guardians for the children? There is a super-stressful topic that hovers around the minds of all parents. This topic is even more difficult to manage for parents who have ill children. 

As a parent of two children who have Lyme Disease with co-infections (one of whom also has PANDAS), I occasionally worry about this. The original people designated to care for our children have divorced and we will need to alter our will. But who in their right minds would sign up for this job?

And to whom would I trust my children?

Another PANDAS/Lyme parent, yes, and I can think of a few who are loving and caring as well as on top of the research. These people are not family, I haven't known them for many years, yet I trust them. However, I really only know the moms and they already have their hands filled taking care of their own children.

I have a couple of friends who don't have daughters; they adore mine and would be so good with her, if need be. But I also have a son and my kids are close. It would be so much to ask anyone to take in two sick children. 

A typical child, is by definition, needy. These diseases result in children with many more needs than the typical child. We're talking about many doctor appointments monthly, a lot of time doling out medications, managing anxiety and other symptoms of these diseases, as well as handling regular life.

In most cases, you need at least a partnership to deal with children who are suffering. There are single parents who are managing sick children, but that's as far from ideal as you can get; the stress is great. Then, it's much more helpful if both of the partners do not work full time out of the house. One person needs to be around for home-schooling or home-tutoring, or picking up sick kids early from school or bringing kids to doctor appointments.

Of course, these children must be provided for financially. Good life insurance policies and estate planning can aid in this. Unfortunately, quite a few families struggle with finances after paying for medical care that is often not covered by insurance. Until PANDAS and Lyme and Lyme's co-infections are given more recognition by the medical community, finding adequate medical treatment will be a challenge and paying for it yet another obstacle. 

So, whom to choose? I found this website which has step-by-step guidelines as to selecting a guardian: 12 Tips for Choosing a Guardian for Your Children. 

There are so many factors to consider: religious values, educational values, parenting values, patience, love, affection. I know of very few people who have the same religious practices that we do. We have high educational expectations but we also know that Lyme will cause many obstacles for our children and we need to work with the educational systems to support our children so they can learn and do their best. We are pretty lenient as parents for some things and strict with others. My husband checks the kids' Instagram accounts several times a week. We insist on protein at meals, usually. We push gluten-free and organic. We also let our children decide what kind of clothing they want, but we put our foot down to other ideas (like nose-piercing, etc.) We're not perfect parents but we listen. 

I need to know that if my son has a Herxheimer's reaction which results in depression or rage, that the guardians will not send him to a psychiatric hospital. He's medically ill (although today, he's feeling just fine, after bicycling 41 miles yesterday with a best friend.) I need to know that he will be supported in his bicycling and horseback riding endeavors, or anything else he chooses to pursue. I need to know that my daughter will not be derided for streaking her hair. I need to know that my kids will be cuddled, which I know, gets harder when they're older. 

I need to know that if I'm not around, someone will teach my children how to dole out their own medicines and how to live a healthy life in order to get that Lyme and co. into remission. 

One of the ideas at this website is to choose a guardianship panel; I especially like this, becuase needs can change over time. To have a small group of people concerned with the welfare of my children would be so beneficial. And together, they might come up with solutions that work. I like this idea very much because this group can become a family to my children, if need be, or even right now. The over-used "It takes a village" couldn't be more true.

I only have ideas, no solutions. It's a topic I dread to discuss. I will rive safely, wear a helmet when bicycling, and hope for the best. I know that I didn't grow up until my late twenties and that my kids will need me for a long time. I'm much older, but even now, it's sometimes nice to hear a parenting voice saying, "Are you doing anything for that cough?" Our children need the best, and while that's us, we must provide for them just in case.

It's hard. 

Monday
Dec222014

Still Alice; Still Lyme

My book club decided to read Still Alice by Lisa Genova for our next meeting. It's a realistic fiction novel about a neuropsychologist who discovers she has Alzheimer's at the age of 50. Moi--reading about another disease that affects the brain? Haven't I researched enough with PANDAS and Lyme?  This was not my first choice of reading material by far. But I like my book club too much to miss a get-together.

One of my best friends is reading this and her dad has Alzheimer's. It's got to be hard to see your own family in this.

I see myself.

For the record, I do not have Alzheimer's and I doubt I carry a gene for it. My dad is intellectual at 82 (sorry, Dad, I know most people think you're around 70) and my mother is a little younger and still brilliant. One grandmother lived on her own and was the coolest, brightest woman until she became ill at 93; she succumbed only because she preferred death to dependency. She's my hero. My other grandmother lived to be 99 and 8 months, and probably would have lived longer had she not smoked for 80 years. 

So long as I'm not hit by a car while bicycling, the path is set for me to live a long life. I'm not a smoker, am just a social drinker, never did drugs, do exercise. I take probiotics and am surrounded by people who love me. I could live to be way over 100. Maybe. If Lyme doesn't get me first.

Lyme Disease can mimic Alzheimer's. Dr. Alan McDonald has conducted research in which spirochetes showed up in the brains of deceased Alzheimer's patients.

"Dr. Alan MacDonald: “Using the syphilis model, I began to study some autopsied brains, and found that I was able to identify spirochetes in autopsied brain tissue in the hippocampus, which is one of the areas that Alzheimer’s disease tends to target in every patient. I was able to grow spirochetes from autopsied Alzheimer’s brain tissue, and stain the spirochetes with special monochromal antibodies, through the techniques I learned and developed through the study of stillborn babies with Lyme disease. And those two positive results made me think even more strongly that some Alzheimer’s might be like syphilis, a late manifestation of the bacterial infection in the brain, not to say that all Alzheimer’s disease is related to Lyme disease, but some."

In Switzerland, Dr. Judith Miklossy followed up his study with her own and came to the same conclusion.

Can Lyme ruin my brain?

This summer, I switched from treating herbally to taking minocycline. I was so fatigued all the time I was treating without antibiotics but just as much so during the reign of minocycline on my body. The brain fog was bad, I was dizzy a lot, my memory was long-gone, and my executive functioning skills challenged, especially with any stress. I filled out papers for a medical evaluation for my daughter, laid them on my desk and forgot they were there. Two days before the deadline for the papers, I noticed them on my desk. They had completely been wiped from my mind. I had to overnight them. 

Like most parents of children with PANDAS or Lyme or Autism or cancer, I'm a researcher, a thinker/doer, a fighter. I use my brain constantly. It's my most meaningful body part! I've always been intelligent and creative--If I don't have that, who am I?

I'm on doxycycline (and more) now and my head is a ton clearer. I don't know if it's because the minocycline cleared something out or if the doxy is just more effective. But I still have lapses when it comes to some vocabulary, or names, or recall. Yesterday, a song was on the radio. I knew it so well--I not only listened to the song many years ago but also sang it while playing my guitar. However, I could not think of the singer's name. Two hours later, Carly Simon popped into my head. 

In the past, I was never like this. I could multi-task like a pro, keep a running list in my head, have the calendar mapped out. I'm linguistic and I like to read and write to learn information (I detest watching Youtube how-to videos for that reason.) I also have pictures in my head of the year and the week, as well as number lines that look like game board boxes. It's a little bit of synesthesia perhaps, which, I once read, does not make me smarter but gives me a different way of looking at the world. I picture the calendar like a giant oval game board with each month a separate room and I step through each month. Events are tied to the months. 

In the book Still Alice, Alice contemplates life while losing her cognitive processes. This book came out before Brittany Maynard took her life in Oregon under the Death with Dignity Act to spare herself and her family the effects of her degenerative brain tumor. It is easy for me, in a healthy cognitive state, to decide how I would like to end up. 

Still Alice also discusses medications--like Namenda--that are in our lexicon. And IVIG, and experimental studies wherein the patient might end up receiving a placebo and not get treatment after all. We considered the Yale IVIG study when it first came out but we didn't want to put our son through an experiment that might not help him at all (and good thing, too, because Yale is not known for being up-to-date with Lyme treatment.) And as in real-life, family members research and get genetically tested themselves. I'm not giving too much away because I haven't yet completed reading the book. I must tell you this: once you begin, it's hard to put the book down. Lisa Genova is a wonderful writer. Her characters become my own famiy members. The suspense builds.

Alzheimer's is a horrible life sentence. We desperately need more treatment options for any disease that affects our thinking, emotions and our way of dealing with the world, whether it be PANS or Lyme or another type of autoimmune encephalitis (as in Susannah Cahalan's highly-recommended memoir Brain on Fire.) If long-term Lyme Disease can so dearly affect our brains, we must have more research. It's one thing for me to double-check the spelling of a seldom-used word, it's another for me to have complete memory lapses. Don't tell me it's my age. When I went on the doxycycline, my brain fog lifted and short-term memory began returning. I know myself. I know my brain. 

But our children don't yet know who they are. They don't understand why they struggle so in school, why they forget the papers they need to complete an assignment, why their short-term memory has gone missing. They don't understand why they can read a page and suddenly not understand it when just yesterday, it would have made sense. They just begin to believe that they're not bright.

Clearly, long-term therapies are needed. Anti-inflammatory treatments are also necessary. I can't give up on treating my own case of chronic Lyme Disease, but if and when I do go into some sort of remission, I need to maintain a healthy brain. I must teach my children to do the same. 

It's time to stop writing and start reading the end of Still Alice. I think I know what I would do if I were in her position and I want to see how it all works out in the story. I wonder how many more parallels to dealing with PANDAS and Lyme I will find as I read. Meanwhile, researchers are still searching for clues, for treatments and for the means to recovery.