I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts

Ah,

the life of a bird

who does not love so much

that it hurts

 

 --LWK

 

 

 

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I wish I was fine

It’s like my brain

is doing a freakin’ crime....

 

From a rap by a child, age 11

Sunday
Oct042015

Transitions and Expectations

There's nothing quite like the first semester of freshman year high school for any student. Add a twist of Lyme and some High Anxiety and you have a cocktail for disaster.

My son always had trouble with transitions. When he was a toddler and it was snowing, he would refuse to go outside. But when he was finally bundled up and playing in the snow, he would refuse to come back into the house. Night time wasn't a huge problem; I'd ask him if he wanted to crawl up the steps or if he wanted me to carry him. Having two options worked well for him. Having two options did not work for my daughter--she would make up a third option (not going upstairs at all!)

When middle school began, we were in the beginning of our war against PANDAS and Lyme. This resulted in my boy being unable to think, unable to attend school. He was tutored by the school district at home for nearly two years, returning successfully in the fourth marking period of 7th grade. 

Now it's the start of high school. New school, new friends, new schedules, new teachers, new transportation--too many options, too many choices, too many changes. Everything is new and Nu, it's not working yet. Oh, how I miss those gates that locked at the top of the stairs so that our small children could not fall down. 

Perhaps he's suffered a flare. It's possible. Even someone shedding a FluMist vaccine could potentially set off a kid with immune deficiency and PANDAS. But maybe it's just the stress of transitioning. One of my best friends told me that first semester freshman year was challenging for her oldest boy who is exceedingly bright with no issues. He had to get used to organizing his work and turning in homework exactly on time. Thanks to an IEP, my son has some leeway with deadlines. But so many changes at once have definitely thrown him under the yellow schoolbus, despite the wonderful help he has received from the school.

So, I decided to do a little research.

Sandy Berenbaum, LSW, BDC, writes that "Kids with chronic Lyme might find it hard to retain new information. Lyme also can effect receptive and expressive language, visual-spatial processing, abstract reasoning, processing speed. Just as Lyme disease can affect any part of the body, it can affect any cognitive process."

She adds: "These kids may appear to be distracted easily, have poor concentration, appear scattered, have just about any symptom of attention deficit disorder. Or if the child had ADD before she got Lyme, her ADD symptoms are often exaggerated by the illness."

While that is the case for both my kids, we have seen improvement since beginning treatment. However, when we hit a snag, we removed my son from medications that were working and that needs to be remedied. He is having major issues with focusing. In addition, any child who is withholding tics throughout the day at school is going to be spent by the time they get home. So focusing and studying when the sunshine is receding can be daunting and the cause of much frustration. 

When school is stressful, many other expectations are shoved aside. Yes, kids are expected to brush teeth and shower, but cleaning their bedrooms, making beds, even setting the table or prepping their own breakfasts can be just too much. This creates increased burdens for the adults. What to do?

Although my son is not on the Autism spectrum, PANDAS can mimic certain sensory and cognitive elements of autism. This article by Lynne Soraya states that it might be hard for kids to access certain skills for a multitude of reasons; in fact, some kids develop in what we might consider an atypical fashion. For instance, my son taught himself to juggle, to unicycle and to play electric bass; however, he still has difficulty with buttons, calculator cases that snap on and combination locks. Soraya writes that

"Kids on the spectrum tend to develop asynchronously: “later” skills may develop earlier, “earlier” skills may develop later and skill level in one area will often be vastly out of sync with skill level in another. A child may have advanced skills in memorization or certain areas of academics, yet still struggle to cross the street safely or order his or her own meal in a restaurant.

Another aspect of this is that skills that have been already attained can be variable as well. Why is this? Well, every person has a finite amount of cognitive resources at any point in time to use for things like problem-solving, navigating barriers and making sense of the input from the senses. In most people, a lot of these tasks, such as managing sensory input, are done almost completely subconsciously. In contrast, those of us on the autism spectrum have to utilize a lot more conscious thought and working memory to deal with such things. Because of that, navigating a new situation can easily tax our resources beyond what we can handle."

It’s like the brain is a bucket that fills with too much water: something winds up going over the side, and what “goes over the side” may vary. In my case, what went “over the side” first were executive processing skills. I had trouble getting organized, I’d get lost in environments that should be familiar and worse, I began to lose things. I didn’t know why. Difficulties with academics soon followed."

Oh boy--this is enough to create a lot of anxiety in a person. I know that my bucket was way overfilled last summer when I was herxing from minocycline. I have experienced some of what my own kids have suffered through. The difference is that as an adult, I know what I'm capable of and what I need to aim for, upon improving my health. My kids don't yet understand how bright they are.

Lyme and anxiety often go hand-in-hand. PANDAS and its accompanying symptoms (that look like behaviors and moods) cause stress for every member of the family. Daniel Sonkin, Ph.D, writes that stress is contagious.

According to Sonkin, "This may seem like a bizarre suggestion, but recent neuroscience findings suggest that our brains are wired to communicate in such a way, that when we are feeling anxious, we can contagiously convey that feeling to others, especially those with whom we have a close relationship. That means kids convey their anxiety to parents, and visa versa, parents convey anxiety to their children. Think of it like the flu – contagious especially between people who are in close proximity. One way to reduce the anxiety between parent and child is for one person to break the cycle of emotion contagion."

So, as parents, what do we do about all of this? Every article will encourage positive communication and problem solving. To me, that reads as a "no duh." It's not enough for a child who is a breath away from being unable to attend school. Personally, I can see how having a school that supports the child/student is crucial. My son's guidance counselor has been very accessible and communicative throughout all of this and has helped alleviate some of the stress.

I also read that run-throughs are good; in fact, the high school had just that as well as a freshman orientation. I can also tell you that it's not enough for a kid like mine. Or many others, including children who have no diseases. Perhaps there is no way to completely eradicate the stress around a transition. Perhaps the best we can do is to support our child as best we can, with additional counseling when necessary, with help studying if need be, with encouragement, problem-solving and sometimes direct advocating when our kids cannot advocate for themselves--until they learn to do so. 

I want my son to grow and thrive. I want him to be able to let others know when he is feeling as though he is in a rut. This week, he worried himself sick over upcoming quizzes. Ironically, he came home with 90s on some of these assessments. I have no idea how he accomplished this.

But this transition is NORMAL, whether or not the child has Lyme or PANDAS. In 7 Tips to Help Teens Successfully Transition to High School, Bonnie Rubenstein writes: "The higher academic standards of high school and increased competition will take some time and adjustment. Often students earn their lowest GPA freshman year, and then begin to figure things out.  When I interview students and ask the question “if you could start high school over again, what would you do differently?” many students answer that they would take freshman year more seriously.  Some freshmen don’t even understand that their freshman grades are part of the high school transcript that is submitted when they apply to college."  

Hmmm. Can't wait for those college years. Just kidding.

Tuesday
Sep292015

Do-Over?

OK, here goes. I have barely written all summer. My 2015 goal was to fix up my young adult/kids novel and finally start getting it out. I sat down multiple times this summer and struggled with it. Major writer's block. But there's more. It's the Lyme and maybe my adrenal system. I'm tired. Like, all the time. I can exercise but I'm back to lying down after I shower, even if it's just for a few moments. And my vocabulary recall is a bit sabotaged.

On a positive note, my daughter is doing better so far this school year. Not only is she performing academically (and the school/teachers have been extremely supportive,) but she can run again without gasping for air! She used to be very fast. (Where she and my son got their speed, I do not know--maybe some latent gene in me since my brother is winning races still.) Or from my husband's side. Air hunger has abated with Babesia treatment. Hurrah!

But my son is struggling still. Joint pain and focusing issues; we had to stop treating the Lyme for a bit because of bad herxes. Now he's paying for it.

And I wonder--when will this hell end? OK, perspective here: he's better than he was years ago. I've got to remember that. He's better than he was six months ago. 

Both my kids started a band this summer with friends and lo and behold--they're actually GOOD! My son started as the vocalist, but then decided he wanted to learn electric bass and he's taken to it. Like, amazingly. He pursues his music the way he did his juggling and the unicycle riding. This is the perseverance that will get a kid with PANDAS through life. My daughter is the drummer who tells her brother to focus, the one who is constantly writing poetry and song lyrics, sometimes from the perceived perspective of her brother (can we talk about empathy?)

I've hit a roadblock though. I want a do-over. I'm sick and tired of the financial issues, of things around the house not getting fixed, of my son and me not getting fixed, of my daughter stressing and distraught, of my husband feeling like we're kinda stuck. I hear about other kids and their multitude of successes and activities. Let's face it, my kids are succeeding because they are more than their diseases. But there's no catching up to the "rest" of the world. 

I feel like a complainer. A whiner. I sense stresses around every corner. I work extra hard to be kinder to everyone when I feel like crap inside. I have to kick myself to make gratitude lists when life keeps taking its punches. I just don't have the energy to keep up.

If life were a filmstrip (remember those?), I'd scoot us back a few years. The summer that my son was 3 and my daughter 1, we joined a fitness club. I used to leave the kids with the babysitters in the playroom while I worked out, then take them swimming, then sometimes have dinner there (until my husband complained about the bills!) and then to the playground. We'd drive home, past the train station and the kids would always get excited if a train was coming or going. Life was simple, sunny, in a summer of gold and sky blue.

If I had a do-over, my kids wouldn't have had Lyme then or at any time. We'd have more money, be able to take interesting vacations, have more joy in our lives. Not that money buys joy--sadly, even John Caudwell's billions can't protect his family.

But, if I hadn't been struck with these obstacles, I wouldn't have met so many wonderful people. I wouldn't know that this world of Lyme even existed. Lyme was relegated to "another person's disease." I would not have had my character tested. I would not have hired an advocate and finally an attorney to represent us when dealing with a school district. I would not have the scientific knowledge about the brain and medical triggers that I do now. I would not be keeping this website. I might not have even taken a bite out of Lyme Disease. 

If life were a movie and I could rewind it, I would hope to have the strengths I've gained in the last 6 years, along with more joy, more health, more optimism. But perhaps that's not how strength is forged. Perhaps I needed to know a different kind of suffering in order to become who I am meant to be.

I just want to get there already. Enough with becoming. I want to pull along all my friends and sister PANDAS/Lyme moms and finally reach that destination in which all of our kids as well as ourselves are healthy. We all need a do-over, and if not that, a leap ahead, a vision that all will be better someday, that our suffering and hard work is not in vain. 

Wednesday
Jul292015

PANDAS/PANS Article of Mine Published!

My article about PANDAS and PANS was published in the August issue of the Fairfield County, CT edition of Natural Awakenings Magazine! Look for the hard copy or read the online version here.  See pages 38-40 for my article and read the rest of this great magazine too!

Sunday
Jun072015

I Cheat (with Wheat) Shh!

I should be gluten free, but you know what they say about should-ing on yourself. Gluten is inflammatory and when the immune system is under attack, it's one less thing the body needs. After all, the gut is the second brain, so taking care of that gut has its rewards. Yada Yada Yada. Talk to the hand. I ate a bagel for breakfast.

White flour, cream cheese (fat!)--I know, I know, but sometimes, a girl's gotta live, ya know?

Since Friday, I have had this wonderful sense of FREEDOM. I talked briefly with the doctor who is treating me for Lyme. In the two years I've been treating (with 2 different doctors), I haven't really seen much recovery. I'm chronically fatigued, my right hip always hurts, and I've had a gamut of other symptoms that have come and gone. I told him that I felt oh-so-much-better when on Diflucan (anti-yeast/fungal.)

So, here's the plan:  get off ALL meds with regard to Lyme for a month and just treat with Diflucan. Yep, call me an experiment. First, I was nervous. I still have electric sparks going off in my legs. I still have word retrieval issues which is challenging because I'm a writer and an educator (and this is more challenging when I'm speaking.)

But, OK. The definition of craziness is doing the same thing over and over again while getting the same bad result, right? So, let's do something different. And hey, I wanted to get off some of the antibiotics that made me sun-sensitive anyway, now that it's summertime. 

So here's what I gain from this switch: I can have coffee with half-and-half for breakfast again! One mustn't take dairy with doxycycline, so, for months I said goodbye to any dairy for breakfast or dinner. Not that dairy is good for me anyway. Additionally, I can DRINK (alcohol) without counting the days since I last pulsed the antibiotic that could make me vomit if taken with alcohol. Furthermore, I no longer have to sit UP for an hour after taking my meds (as one mustn't recline after taking doxy.) I can take probiotics any time I wish, not a calculated minimum of two hours away from antibiotics. 

I feel like a NORMAL person again! Yay!

Umm...except that I do still have decades worth of Lyme in my body and a possible untreated Babesia infection. 

I wonder if now would be a good time to try one of the two homeopaths that a couple of friends rave about; both seem to involve a little bit of voodoo which makes me cringe because I'm such an unbeliever. Placebos won't work for me; I never even got essential oils to do a lot for me, but then I was always working a ton and didn't put enough energy into learning about them. (By the way, lemon oil is a wonder for zits, but since being on doxycycline, I haven't really had any zits.) We've tried homeopathy twice so far--for my son (and it didn't help, but we probably didn't give it enough time) and for my daughter (and it helped more than we realized.) That's Option #1.

Option #2 is continuing to work with my current doctor, who is not really ILADS-trained (yet?) but who does somewhat take insurance; who does not give me enough time to communicate all my issues but who does take my $30 copay and will prescribe the meds I need; who is not up on all aspects of the multi-systemic side of Lyme Disease but who does take my $30 copay.

Option #3 is finding about $4,000 and going to see one of the top Lyme doctors in the country. Considering that we owe our credit card companies (plural!) more than ten times that amount already for the medical care of our kids, it's not very likely to happen.

Option #4 remains open to suggestions. 

When it comes to my children, I must always have a plan and an alternate plan. Of course, my son is much sicker than I have been, and he needs the best medical care possible. My daughter also needs the best so that she can be the happy, sassy kid she's supposed to be. My husband and I don't shirk from doing everything that we possibly can for them, but for ourselves, we do take shortcuts. Many shortcuts.

Doesn't it seem crazy that we're all sick in my family? Why does Lyme seems to run in families anyway? In our case, it was probably congenital, passed through the placenta during pregnancy. It also can be transmitted in breastmilk (and I nursed), and recent studies have shown that it can be sexually transmitted as well. So, there's an entire portion of our world in which the entire family is ill. Outsiders question that: How can everyone in one family have Lyme Disease? Isn't that unusual? Not at all, not at all. Unfortunately.

But--put the rest of the world on HALT for a second--on the positive side, if I'm taking Diflucan (after confirming that my liver is functioning well,) I have about 28 days left of fewer sugar cravings, more energy, and more clear-headedness. One month to see if my bicycling speed and mileage picks up, and if this change does make a difference. And if it does? What does that mean?

I will, however, keep to my typical gluten-free eating. I might have a bagel once in a while, but in general, I'm pretty fastidious about not having gluten. I need to take care of my second brain--the gut--so that the first one will actually do some thinking about this dilemma I'm in. I believe my own case of Lyme was lingering and became obvious after being triggered by long-term post-traumatic stress suffered with my son being so ill. He's not yet free of Lyme and neither is the rest of the family. Stress exists. Therefore, so does my Lyme. A mom is only as happy as her least happy child, they say. 

He's happy this morning for a couple of hours; friends slept over and they ate...bagels! I'm going to walk off my bagel and cream cheese with a friend and our dogs under beautiful deep blue skies and sunshine. For this moment, life is more than OK. Until his friends go home. But feeling normal feels wonderful for today and I won't let anything take that away.

Friday
May292015

What's Your Life Like? A Game Show

I sat in the audience of What's Your Life Like?, waiting for the game show to begin. Pick me! Pick me! It wasn't the first show I'd been to, but my seats were closer to the stage and action this time. Lo and behold, I was chosen! I would be a contestant! Wow!

The What's Your Life people gave me a make-over and the chance of a lifetime. Whatever I earned would be mine to keep, with the stipulation that I would walk away a changed person. The other two contestants, a man of about 45 with a comb-over and a woman of 93 with zero wrinkles, stretched cat eyes and garish maroon hair, whispered to each other as we gazed at the mystery doors before us. I believe she had once been SOMEBODY. 

This was a combination game show that showed on every network. The entire world was watching. I knew I was going to hit it big! First, I had to sing in front of the audience, and for that, I got a standing ovation. The comb-over dude tried to rap and was booed off the stage. The 93 year old flirted with the MC and was given a free pass. My eyes narrowed. Not fair.

She and I were shown three doors and asked to choose.

Ms. Maroon Hair chose Door #2 which led to a mansion with an Olympic-sized swimming pool and a hot-bodied pool guy who looked no older than 50. "I want it all!" she giggled. I rolled my eyes.

I was told to decide between Door #1 and Door #3. I chose Door #1.

Door #1 gave me a handsome guy, along with trips to Europe, a sweet house in a friendly neighborhood, a cool German Shepherd who obeyed every command and 2 delicious, smiley children, in that order. Yes! Jackpot! I felt so happy, I sang!

The MC asked, "Would you both like to see what is behind Door #3?" 

Sure, we shrugged, why not? 

Door #3 lead to a career as a stock analyst, a zillion frequent flyer miles, a fancy NYC apartment with a full-service bar that would be put to good use and a gym membership that wouldn't. The walls were papered with stock tickets. Ms. Maroon Hair and I grinned at each other. We'd done better than that.

But to keep it all, we had to proceed further into the game. We had to...risk it all! The second round was nicknamed the dystopian fantasy round. There were more doors to be opened. Mrs. Maroon Hair selected first and found herself in a shmaltzy assisted living facility that still managed to smell like ammonia. The young, beautiful helpers rode around in wheelchairs while the elderly, dressed in tuxedos, served them. Let me tell you, Ms. Maroon Hair knew more curse words than I did.

She was asked if she'd keep it or trade it all in for whatever lay beyond...it could be the first door she chose or something else entirely. The final door was the Sticking Door--whatever she selected now would remain with her for life. "Trade! Trade! Trade! chanted the audience. 

Suddenly, Ms. Maroon Hair had her mansion returned to her, and with it, nearly half her youth. She transformed into a gorgeous 55 year old with flowing red hair and a mermaid's tail. (I did note that she also had normal eyes with a few wrinkles crinkling the corners.) The pool boy's mouth dropped and so did he, onto one knee, as he held out an emerald engagement ring. "I'll take it!" she giggled.

Ahhh... she would live happily ever after (as long as she stayed in her pool, that is.)

I walked through my next door but nothing changed. I gazed all around--I still had the husband, the house, the dog and the kids. I began to question the MC when I realized that a gray smoke had settled all around me.

Suddenly, the dog keeled over, dead of cancer at a young age. Faulty water pipes were found in the 90 year old house and the dishwasher stopped working. The husband's company closed down. And the 2 wonderful kids turned out to be sick. 

I was asked if I would trade it all in or stop there. 

Trade! Trade! Trade! shouted the audience. 

Well, heck yeah! I'll trade, I yelled back.

"You realize that you could end up with anything else," the MC warned. 

"Sure, but I'm sure it will be better than this!" I replied. I was still hoping for that singing career in addition to the family. Maybe this was the chance to make it come true. Or perhaps, I'd be a famous novelist! "Trade!" I yelled again.

The final door led to a hospital to the left and to the right, an now even older house that suffered from lack of a new paint job as well as from faulty water pipes and MOLD. And a husband who was working out of the house part time while trying to take care of one of the two sick kids who was extremely sick and couldn't attend school.

"This is horrible!" I gasped.

"Oh, but it gets worse," the MC leered. "Watch!"

I shivered as I watched the second child struggle with illness and scholastics. And I shuddered as I saw that I had become sick as well. I wasn't a Broadway star. I was a sick chick. With a sick family. In a sick home.

"Trade!" I yelled, but no one heard me. The audience was laughing and slapping each other, and saying, "Good show!" and the MC was saying, "And we are out of time. Stay tuned for tomorrow's edition of, What's Your Life Like?"

trade! i whispered. trade..?

t...r....a...d...e...?

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