Thursday, August 27, 2020

 Image may contain: text that says 'WESTPORT WRITERS WORKSHOP' 

Here's a great opportunity to learn more about creative writing!

Introduction to Creative Writing:

Beginner to Intermediate

Join us on Zoom this fall for a lively, interactive study of creative writing and critique with Adele Annesi for the Westport Writers’ Workshop. For more, visit Westport Writers’ Workshop.

I know Adele Annesi personally. She's a great writer and teacher with lots of experience in helping writers take their work to the next level.


Saturday, May 16, 2020

Book Review: Children of Wrath



Children of Wrath by [T.A. Ward]This novel was a powerful thriller!

When you read a thriller, you expect suspense, anxiety, and a quick pace. This bio-terrorist thriller had all that, but it had even more—it had characters I loved. Ethan and Liz are a deftly nuanced couple who find and decide to love an Inexorable (a psychopathic child who wants to destroy them). And as they face the ramifications of that decision, the tension builds between Ethan and Liz, especially as Ethan searches for a way to heal their son and discovers others will stop at nothing to prevent it. In the end, a cure might cost their very lives.

Children of Wrath is a definite five-star novel, and I look forward to reading the next book in the series.  

To see the novel on Amazon, click here.

Blurb:

Five years after working triage during America’s terrible Day of Destruction, Philadelphian Dr. Ethan King wants nothing more for himself and his wife than a normal life. In the aftermath, however, life is anything but normal. The mysterious nerve gas unleashed during the nationwide terrorist attack has left its disturbing mark among the millions of victims, namely brain abnormalities in unborn children. These children, dubbed Inexorables, live up to their name: they are ruthlessly violent, irrepressibly psychopathic—and incurable. They kill without thought or remorse, and inflict torment on their victims with childish glee.

In his pursuit of a normal, peaceful life, Ethan tries as best he can to put these grim realities to the back of his mind. But one cold night, when he comes face to face with an abandoned Inexorable freezing to death in the snow, he must make a choice that could cost him everything, and unravel a thread of dark woven secrets. As he races to find a cure for whatever is creating a generation of doomed children, Ethan discovers that doing the right thing in an evil world is never as clear and easy as it seems.

Tuesday, May 12, 2020

Ehlers-Danlos Syndrome Awareness: My Symptoms


File:Zebra 2013 10 06 1274.jpg

The Ehlers-Danlos Syndrome Society has urged us to share our personal symptoms on social media to raise awareness. I’m hesitant to talk about my symptoms, but a few people have asked if I would share them because they know someone who might have EDS. So, here are my symptoms. (Below that are links with more information.)

Chronic (often severe) pain
Extreme fatigue
Joints (large and small) are hypermobile: they fully or partially dislocate.
Circulatory system problems, including low blood pressure, blood pooling, 
             fragile blood vessels, which lead to bruising.
Orthostatic hypotension
Severe sleep problems
GI problems (IBS, delayed gastric emptying, heartburn, etc.)
Swallowing problems
Organ prolapse
Migraines
Fragile tissue (skin tears, surgical sites tear, very delayed wound healing)
Stretchy, velvety skin
Striae (stretch marks, which aren’t related to weight or pregnancy, 
            and tend to be in unusual places like knees, etc.)
Piezogenic papules on wrists and feet
Ganglion cyst
High palate
Arches that flatten when you stand


         For more information about hEDS, click here.
         For a link to the diagnostic criteria for hEDS, click here.

Friday, May 1, 2020

Ehlers-Danlos Syndrome Awareness Month

What’s up with EDS?

1.       It’s a rare genetic connective tissue disorder named after two dermatologists who each wrote about patient who had skin that was hyperextensible—super stretchy.

2.       It’s a collagen disorder. Since collagen is in almost every organ, tissue, and system, they can all be affected. That means the pain is chronic, often excruciating, and exhausting. (And no, taking collagen doesn’t solve the problem because our bodies take the collagen from what we eat and drink to build the collagen we need, but EDS bodies build it incorrectly.)

3.       It’s genetic, but not all affected family members share exactly the same symptoms (though they will have the same subtype). It’s also much more commonly diagnosed in women—hormones may affect gene expression.

4.       There are 13 subtypes, each with its own problems and prognosis.

5.       Getting diagnosed. Studies show that it takes the average EDS patient 19 years (yes, 19 years!) to go from showing symptoms to diagnosis. It took 37 years for me to go from symptoms to diagnosis. Partly, it’s because EDS is so rare most doctors haven’t seen a patient with EDS. The 2017 estimate is that somewhere between 1 in 5,000 to 7 in 1,000 people have the type of EDS that I have.

6.       Why is a zebra the mascot for EDS? Doctors are taught when you hear hoofbeats think horse not zebra. After all, it’s pretty rare to find a zebra. But they exist—and so do people with EDS, even though we’re few a far between. 😊


Thursday, March 5, 2020

Rare Disease Day, Ehlers-Danlos Syndrome


The zebra is the mascot for EDS because medical professionals are often taught,
 when you hear hoofbeats, think horse not zebra. But people with EDS are zebras.
Image courtesy of Wikimedia commons
February 29 was Rare Disease Day. I’m a few days late, but here’s my rare disease story: Ehlers-Danlos Syndrome (incidence 1/10,000 to 1/20,000 for my subtype).

After a lifetime of knowing something wasn’t quite right with my body, a geneticist recently diagnosed me with Ehlers-Danlos Syndrome, a genetic connective tissue disease, which affects all the body’s organs and tissues causing deterioration and degeneration. The subtype I have is characterized by pain and exhaustion. (Honestly, I don’t remember a time I wasn’t fighting pain or exhaustion—I thought it was normal. I told myself, “Suck it up, Buttercup.”) Without going into the nitty-gritty, the geneticist explained my condition this way: Imagine your body is a house built with nails that are soft. It’s not too bad at first. But over time, the nails fail. The shingles and siding blow off. The wallboard falls down, and the floors come apart. And, the 2 X 4s holding the structure together start to separate from each other.  (Not the most encouraging metaphor…)

There is no treatment for EDS. The only thing doctors can do is treat the symptoms. Because my house is in its fifth decade, a lot of things are falling apart (spine, joints, eyes, digestive system, circulatory system, etc.). But I am thankful. After 53 years, it’s nice to know why.

Thursday, September 12, 2019

News!


 It’s been a while since I’ve updated. Instead of trying to share everything at once, I’ll share what’s been going on in different posts. Here's one of the big changes--my husband and I moved to North Carolina. We found a lovely house with beautiful gardens and a lake in our back yard.

Here are some photos:

My parents came to visit, and I took my dad kayaking on the lake.
An ocean of hellebores.



A view of the lake from the side of the house.

Same view, different flowers.

Our lanai.

Tuesday, August 28, 2018

Old Salem


We were recently in Winston-Salem. In the heart of the city is a reminder of years and generations gone by. Here are some photos.


The first building built, The Apothecary. Not sure what this says about people, or Americans, in general, that the first building built is an apothecary…

I love the herringbone pattern of the sidewalk bricks. And the street is Bank Street because the bank was there. It appeals to me more to conjure a story about an embankment where people waved goodbye to loved ones sailing across the sea. Or better yet, a rise where people buried their treasure to safeguard it from pirate raids. But Salem is in north-central North Carolina, so no ocean-bound or pirate ships. Alas, it’s just a street where the bank was.








Here’s an allée leading to Salem’s cemetery. Some of the early leaves had turned and scattered the pathway. I can only imagine what it will look like in a few months.




Here’s the first grave. When our children were young, we moved from California to Connecticut, and one day the children asked me “What are all the stones along the side of the roads?” I discovered they’d never seen an old graveyard—in CA, the cemeteries were behind tall stone walls. So, though some people might find it macabre, we’d take the kids to walk through the graveyards and look at the markers. It reminds me of a quote from The Silver Chair, “He has died. Most people have, you know…There are very few who haven't."



Here’s an ongoing excavation of pottery kilns.                                                

And below is a photo of one of the beautiful homes. (Many of the homes are still private.) The architecture is exquisite. Even though buildings were mainly about function, they never lost sight of beauty, balance, and form.





And a close-up of the same home. They are bigger than they appear from the front.


I hope you enjoyed the photos!