POTS and Lyme: Sounds Like a Party

Except it isn’t. lime in a pot 3

In an earlier post, I listed the stressors that keep me from writing, sleeping, sometimes even breathing (because panic rises, a tangible smog, that chokes the space between lungs and throat). The worst is chronic illness. Not my illness, but that of my sweet, smart, talented, creative, and incredible daughter.

Because of her POTS and Lyme (which is often not just one infection but a clusterF*#k of infections), she suffers fatigue so debilitating there are days when her greatest achievement is moving from her upstairs bedroom to the downstairs couch. Her muscles ache. Her brain fogs. She misses school. She misses friends. She misses… a lot.

I could write a book on the impact of illness on her life, but she is the better author of that story. Instead, I will write my story: being a parent to a chronically ill child.

Where to begin?

First, every day is an adventure. I don’t know how to plan my day because my child’s sickness plays a fickle game. Even across the day, fatigue and depression and pain and anxiety ebb and flow. Anxiety is my morning caffeine: is she going to school? Is she going in late? is she going in at all? In turn: am I going to work? Can I go in late? What do I absolutely need to accomplish today? What CAN I accomplish?

Second, helplessness is a new, unwelcome emotion. Friends, you know me–I’m the ‘can do’ girl who works hard to get what I want. Well, I want a healthy, happy, productive daughter. I work hard to make this happen: research, medical appointments, trials of medications and supplements and diets. Not including her primary care physician, she has three physicians. A phlebotomist comes to our home to draw blood for tests. Some symptoms improve, others worsen, new ones pop up.

And there are days when I feel an abject failure because I. Cannot. Fix. Her.

Third, worry thickens my brain. I cannot think. At work, many days I go through the motions. When my head clears, I research her conditions; I have become expert in traditional and alternative treatments for Lyme and POTS. Worry thickens my heart–I am not the friend and colleague and mentor I want to be. I cannot absorb other peoples’ problems, mine overfill my reservoirs. My inability to listen and hear others saddens and frustrates me, and adds to growing guilt I do not give enough. Worry and guilt wake me up too early every morning, and I lie in my bed until the roaring train in my head forces me out.

I write all this not for sympathy but for understanding. Why I am absent. Why I am not proactive in friendships. Why I am so quiet.

I need to do my work, because the only thing I can fix is my reaction to my now. Because I am a ‘can-do’ woman, I need to make sure my oxygen mask is in place so I can be there for both my children, my work and writing, all the people who grace my life. I have a toolbox, with lots of tools, which I have begun to haul out:

  • Exercise: I aim to get over 50,000 steps a week, but that’s not enough; hence, Planet Fitness (I hate to waste money, so I try to go at least once a week). I found a muscle in my upper arm, a real benefit.
  • Meditation: Every day, remember to breathe. Remember to come to my senses.
  • Yoga: Two birds (exercise AND meditation) with one stone.
  • Support: Yeah, I have a therapist. She listens to me vent, helps me strategize. But I need more, so I am looking for someone trained in Dialectical Behavioral Therapy (DBT) to help me achieve radical acceptance of my every moment.
  • Medication: Nope. Don’t do antidepressants any more. But I do supplement my brain with GABA (for anxiety), and 5-HTP and l-theanine (for depression and sleep and brain fog).

I focus on my health so I can function. So I can live a better quality of life. So I can be compassionate to others, especially my daughter. To respond out of love and not fear, always.

Self-help is so important, even when we’re not challenged but larger-than-normal life. Tell me: what are your oxygen-mask facilitators?


4 out of 10

stress-4Stress is ubiquitous. These days, perhaps, more than ever. My online friends’ posts have virtual worry lines; my in-the-flesh friends’ uniforms consist of pinched faces and slumped shoulders. Reasons for stress are major and minor, and some wear us down like a river makes a canyon with their constancy. Others are mere annoyances, gnats buzzing in our ears, but these are the stresses that often shoot us over the edge.

There are many ‘top stressor’ lists (when I googled ‘top life stressors’ I got 8.62 million hits), but one decent summary revealed these:

  • death of a loved one
  • separation or divorce
  • getting married
  • starting a new job
  • work place stressors
  • financial problems
  • moving to a new house
  • chronic illness or injury
  • retirement
  • transitioning to adulthood

Since May 1, I’ve been the lucky recipient of 4 of these challenges. Not to mention lots of lesser stressors (e.g., crazy landlord) and those wholly out of my control (e.g., #45 and his mayhem-making minions). No wonder my heart feels like it is pounding out of my chest, sleep is an elusive friend, and I cannot focus on things that typically bring me joy. Like writing.

So here are my bad boys—separation/divorce, work place problems, moving to a new house, and chronic illness. I’ll be writing about each major stressor, how it affects me, and what I’m trying to do to help myself cope, in subsequent posts. But meanwhile… how the heck are you? Which of the above (or add your own) stressful situations are you currently experiencing?



Why I Marched


Because I am sickened by the violence in our nation.

Because my first reaction going to a theater is: how close am I to an exit?

Because I want to support the future of our world–our young people–who need our help to better their world.

Because last Thursday Jaelynn Willey was taken off life-support after a fellow student shot her with a semi-automatic Glock in Great Mills High School not too far from where I live.

Because I want to be part of the change.

Because violence physically, emotionally, and spiritually kills everyone who is a victim–and everyone who knows a victim.

Because those who commit violence suffer physically, emotionally, and spiritually.

Because guns should not be easier to obtain than an animal from a shelter.

Because my daughter asked me to.

Because children can no longer be valued less than the right to bear arms, especially since the intent of the 2nd Amendment is to protect.

Because there are better ways to resolve conflict than violence.

Because people are dying.

Because people are afraid.

Because my daughter is afraid.

Because I am afraid.





Free Associations

inline-The-Company-Chaos-You-Dont-Know-Youre-CreatingDriving through Maryland horse country about midnight, spring peepers wailed their song loud enough to drown out Marina and the Diamonds.

Same road, five miles later, a dead fox by the road side, its cub caught in our head beams; my daughter said it was eating its mother, I said it was crying.

Two movies to watch back-to-back: Darkest Hour and Dunkirk.

I hate Hitler.

Number 45 reminds me of Hitler in many ways, though I don’t think 45 is a leader as much as a puppet.

I wonder who really is pulling his strings.

Manipulation comes in so many forms. The most dangerous? Emotional manipulation. A master can blind-side you.

I no longer care about politics in the Ivory Tower. People who play games do so out of insecurity–and fear.

Sometimes I worry about the future, usually at 2 or 3 in the morning. Then I remember–can’t do a damn thing about something that may or may not every happen–and go back to sleep.

Spanakopita tastes better after it’s rested a day.

Phyllo dough is miraculous.

So is Mr. Robot. A freaking brilliant show. I love Rami Malek, those eyes brooding from under his hoody. Scary stuff, though it’s probably not so far from reality as we might hope.

The price for Wellbutrin XL (the brand version) has skyrocketed over the past year to over $1,250 per month. Pharmacist’s tip of the day: switch to Wellbutrin IR (the brand version of immediate release) and you will save $1,000 or more. Pharmacist’s tip of the year: Most of the extended-release generic versions of psychiatric meds are crap. If you have to do generic, go with immediate-release. And if you can, always go with brand.

So there’s a vent. What’s on your mind?

Peace, Linda


candlesI don’t do resolutions–they’re as ethereal as lit candles on a birthday cake. Or wishes on a shooting star. But I do like the idea of starting anew, which is why I do spend time reflecting on the last year: what worked, what didn’t, what I could have done better.

What did work was listening to others, mostly my kids. Not giving my children my ‘fix’ helped improve our relationships. As my daughter says, “Mom, sometimes I just need to vent, not get therapy.” Sure, sometimes their words hurt, but not taking their stuff personally was the #2 thing I achieved this year. It’s tough having a Velcro exterior that captures anxieties and fears and hurts, then instantly morphs into armor. The third thing that worked was spending time by myself traipsing around Baltimore neighborhoods and checking out independent coffee shops where I could write. Becoming comfy with myself.

What didn’t work was my sloth vibe. Even my doc expressed concern about my sedentary ways. I’ve ordered a standing desk for work, and I’m sure the ‘it’s a new year and a new you’ gym specials will fill my mailbox tomorrow. And I’ve joined the Instant Pot Nation, so healthy, home-cooked meals are a button-push away. What also didn’t work was worrying about work. Work is work, and only work–it’s not me or my life, just a place I go and do what I need to do to get the money to pay the bills. Actually, I love my job, but this past year I let politics and pettiness rule my enjoyment of the people and process. So, yeah, better balance is required.

Lots I could have done better. But why beat myself up? Live and learn, my son says. I think I’ll listen to his wisdom.

How are you greeting the new year?


The Loneliest Tree

fir treeOnce, high on a golden hill, lived the littlest fir tree. His older brothers and sisters often sent him special gifts: a spider trailing on a silken thread, milkweed spores drifting on a summer breeze, soft pollen that painted him yellow. These presents made the small fir tree tremble with joy. But when the spider lifted away, the downy milkweed fluttered to the field, and the wind dusted off the pollen, the little fir tree felt lonelier than ever.

In the Spring, a wren chose to nest in the fir tree. Mornings, the baby birds chortled as their mother searched for grubs and worms. One afternoon, as the littlest fir tree and the baby wrens drowsed in the wan sun, the wren squawked loudly, rousting her family from the tree. A man and a boy, both clad in overalls, walked through the orchard, throwing fertilizer around the trees.

“There, there.” The boy tossed pellets under the littlest fir tree’s boughs. “Grow strong and green.” He squinted up at the nest perched in the littlest tree, his Red Sox cap on backwards. His fingers stroked the needles and the tree shivered.

“So soft, papa,” the boy said. “Like a kitten’s tail.”

“Yup,” said the man. “He’s the youngun here – just like you.”


That summer, the wind smelled of sweet hay. Buzzing bees filled the air with song. The farmer and his son came to the hill almost every day, watering the trees when the sun withered their needles. The boy panted and groaned as he hauled the full pails up the hill, but he always watered the littlest fir tree. After, he collapsed in the cool shade cast by the fir tree and made up stories about the puffy cloud creatures scudding across the sky.

One morning, the farmer came with a machine that whirred and twirled. The smallest fir tree watched the farmer trim his brothers and sisters into triangle shapes. The other trees danced in the breeze, happy with their new look, but the buzzing tool scared the smallest fir tree.

“This won’t hurt,” the boy said. He didn’t wear a cap, and the sun shone on his shiny head. “See, I don’t have my hair anymore, either.”

And it didn’t, the tool tickled. The fir tree shivered with delight.


The leaves of the forest maples flamed red. Shadows stretched long across the meadow. The boy didn’t come to the orchard very often, and when he did, his father often carried him to  the littlest fir tree, and the boy slept in the warm autumn sun.

On the first hard frost, the hill sparkled with diamonds. The man walked the orchard alone, pulling long red and white and yellow ribbons from a leather bag slung over his shoulder. He tied a ribbon on each tree and the ribbons fluttered like flags in the brisk wind. The littlest fir tree wondered what color ribbon the farmer would tie on him. But when the man reached the hilltop, he paused before the littlest tree and sighed a deep sigh, then walked back down the hill.

The sun dropped behind the forest ridge. The fir tree shivered, sending needles to the ground.


The first flakes of snow fell. The ground rumbled. Cars and trucks filled the bottom field. Shouts of children filled the air.

“There! This tree!”

“No, this one!”

The children swarmed around the small fir tree, sometimes even saying “This one!”

But the fathers said, “This tree is too puny. Besides, it has no ribbon,” and strode past, saws and axes thrown over their shoulders. The littlest fir tree trembled as his brothers and sisters groaned and fell to the ground.


Snow dusted the stump-stubbled hill. Without the protection of his family, the northeast gusted hard and cold, coating the trembling fir tree in ice. The mockingbird trilled as the wagon, pulled by the man, bumped and creaked up the hill. When the man reached the top, he pulled off his wool hat and wiped his sweat-shined forehead. In the wagon, the bundle of blankets moved; the small boy, pale and drawn, poked out his head. He smiled at the littlest tree, but the smile seemed as big an effort as lugging pails of water.

“This one?” the man asked the boy. “You’re sure?”

The little boy nodded and closed his eyes. The man gazed at the boy for a long moment, then turned away, a tear frozen on his cheek.

The fir tree looked down the hill at the stumps of his family one last time. Then he pulled his limbs tight and waited for the ax’s blow. But the man plunged a shovel into the frozen earth. He chipped a circle, deeper and deeper, around the tree, loosening the dirt around the fir tree’s roots.

The man pulled the tree tight to his chest; more than anything, the littlest tree wanted to stay in his embrace. But the man tugged hard, yanking the tree from the cold ground. The boy clapped his hands, his laugh sounded like birdsong.

“Your little tree will grow strong in the front yard,” the man said. “There, we can see him from the kitchen.”

“And I can visit him in the spring?” the boy whispered.

“Yes.” The man wiped at his shiny cheek. “Yes, you can.”

The man wrapped the trembling tree in burlap and nestled him in the wagon beside the boy. The boy snuggled into the littlest fir tree all the way down the hill and across the bumpy field. When the wagon stopped, the farmer unfurled the littlest fir tree from the cloth and propped him in a large hole. Shovels of dirt and snow covered his roots. The boy clambered from the wagon, falling twice in the deep snow. When he hugged the littlest fir tree, icicles tinkled to the ground.


I wish you health

I wish you joy

I wish you peace…

Holiday Grief

red christmas ball decorationAt the risk of sounding Scrooge-like, I contend the holiday lights and deep-discount sales and piped-in Bing Crosby carols that commence with an onslaught the day after Halloween serve as distractions for what is, without doubt, the least wonderful time of the year.

Everywhere, it seems, there is forced cheer, a rush to celebrate–what exactly?

Beyond the crass commercialism of the season, I think the glittery expectations mask something deeper. It wasn’t until half-way through Three Billboards outside Ebbing, Missouri that it came to me—grief. This movie, phenomenally acted and filmed, is a study in grief and futility, of the ends people take to alleviate despair. It’s a brave film because it lays naked the sadness and anger and fear we, as a society, fear to show and name.

My grief becomes manifest when the days shorten and the temperatures dip. In the past, I’ve written how I welcome winter as a time to turn inward. But this year, things feel darker. Perhaps it is the accumulated memories of relatives, including my grandparents and father, who died this time of year. (My father’s death anniversary is a full moon that throws me in a deep, irritable funk). Perhaps it is the realization this is likely my mother’s last Christmas. Perhaps it is the haunting of a friend’s teenage daughter who took her own life last month. Perhaps it is the rapid dismantling of our country’s values on a nearly daily basis. Perhaps it is all of the above, and then some.

There are inklings others feel the same—it seems there are more face book posts with suicide hotline numbers, more food and clothing drives for those less fortunate. A grief akin to tenderness. All I know is I feel alone, which makes me feel small and vulnerable and lost. But rather than deny this discomfort, perhaps it is best to embrace these uncomfortable feelings and howl my grief for all I have lost and all I will never have.

And then, when I’m done blubbering, I will be able, again, to pound out dough and unreel wrapping paper and smile like I mean it. Because I will.

Tell me, how are you handling these days?


Small Stuff

coffeeAfter many years of grief and, yes, trauma, this last year has been a reservoir of peace, and for this, I am thankful. Perhaps the peace come from my attitude, newly grown from meditation and increasing age. Maybe it is the vantage point of seeing things in the long run and being able to put ‘stuff’ in context. Maybe it’s finding this strange energy that fuels me to build on the small moments: a mug of coffee on my winter deck, a view of Baltimore from the top of Federal Hill, watching my daughter hug her friend. Or maybe it’s the way my puppy snuggles back-to-back when we sleep. Maybe it’s the calming down of heart and mind to find a silent few minutes to write at my desk, the sun slanting in to greet my words as they birth.

I don’t know. I just feel peace and, yes, some joy, and damn it, I am going to hang on to these feelings as long as I can.

So today, I will keep singing as I make my pies and cranberry relish, as the turkey starts smelling up the house, making my animals circle around my legs, whining.

So before I open my emails, before I read the news and see what destructions have spattered people and places, before I open facebook and twitter and my forums to find personal tragedies revealed, I will keep this intention:

Be thankful.

For the small moments.

THEY are life.




Pink coatEvery now and then an angel visits me and reminds me to be kinder. Monday morning arrives. Not any Monday morning but the Monday morning after the end of daylight savings, which means the congratulatory, almost giddy relief of an extra hour of sleep has worn off. I wake cranky and brain-fogged yet fully aware I have a too-full day yawning before me. The metro arrives, I find a seat by myself, and we pull away from the station. After two weeks of ‘single-tracking’, which means hour-plus commutes and crowded trains, this fact equates to a small miracle. The car is quiet, everyone on their phones or in their books, and the sky is lighter than before.

We go underground. After we pause at the first station, a loud slapping noise. A woman holding open the train door. This action: 1) makes a lot of noise; 2) delays the train; and 3) sometimes disables the car, which means everyone disembarks and waits forever until the train is manually pulled away and a new train arrives. We all yell at this woman keeping the door open. The conductor yells at her. And then another woman slowly makes her way down the escalator and into the car.

“I’m sorry,” she says to everyone in the car, and settles somewhere behind me. I’m irritable now, and can’t concentrate on the paper I’m reading so I play an idiotic game on my phone. Two stops later, someone settles beside me.

“Thank you,” she says.

I look up. It’s the woman who came late into the car.

“For what?” I ask.

“For making room for me.”

I wonder if she means room on the seat, or room in the car, or something larger, more metaphorical.

“It’s a two-seater,” I say, and we both kind of laugh.

We talk. She has a cane. She’s afraid of falling because she’s nauseous all the time. “It’s the medicines,” she says.

I take in her short-to-the-skull hair, the fact her stop is Hopkins, and I nod. “Cancer’s a bitch,” I say. She nods. Cancer is a bitch—and a bastard—and I tell her about my dad, and she tells me about her next and final round of chemo.

I tell her I like her coat. “It’s so pink, it brightens the day,” I say.

“That’s why I wore it,” she says.

My stop comes before hers. Trudging up the stairs at Lexington Market, I feel lighter. In these days of never-ending shootings and natural disasters and idiocies perpetrated by those in power, sometimes I forget that what might appear as a selfish gesture (one woman delaying a train by holding a door) may actually be an act of goodness. That my quick move to judgement may be wrong, and such inaccuracy contributes to the weariness and despair so much of us feel. The rest of the day I felt a tenderness toward everyone, a feeling that, in turn, made me more tender and open to the moment, and accepting it for what it is and not what it might be.

Welcome to my new digs. Come in, have a seat, share what’s happening in your writing, work, and personal lives. I’ll be hanging here for a while, and welcome any suggestions on how to better decorate. Peace…