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


 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 allĂ©e 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!

Friday, August 10, 2018

When Life Interrupts Writing

I'm not allowed to bend yet, so I sit on the
coffee table in my office when I work on my plot.
Since my last update, life has been a crazy haze of moves, surgeries, etc. (In the past six months, my husband had six emergency eye surgeries, I had three spine surgeries, and our son had cardio-thoracic surgery. Our daughter moved to Maine, where she’s a professor of mathematics at a college there, and our youngest son moved to grad school to study analytical chemistry.)

Despite all that, I’ve made progress on the plot structure of my work in progress. My cork board has gone from two notecards to thirty notecards, each representing a single scene/chapter. I'm somewhere between a half to two thirds done. I’d hoped to have completed the entire structure by now, but I’m telling myself to be thankful for what I’ve finished. Besides, every novel has its own time and way to be written. Sometimes I’ve started writing before I knew anything but the opening and closing scene. And another time, I plotted an entire novel on a two-hour drive. (I wasn’t driving, of course.)

The only advice I can give to writers who find that life keeps interrupting their work is to keep the story alive in your mind. If you can’t write, read. As often as you can, read over story notes, read over your plot outline, and scribble down any new scene that comes to mind—you can always toss it out later if it doesn’t work. That way, when you do have time to write, the embers of the story will be warm. And you won’t have to restart the fire of creativity.

Wednesday, May 16, 2018

New Novel

I've begun a new novel. On the left is a photo of my storyboard. I wish it looked attractive. But it is what it is--a utilitarian workhorse. And it reminds me the beauty of the story rises or falls based on what's written those notecards.

Besides the storyboard, I have a notebook with thoughts and ideas. But what makes it onto the board are the things that are sure and true.

To start a novel, I need the two things written on these cards. One, the card on the top left, contains the background of the novel, i.e., what happens before the opening scene. Two, the card pinned in the middle, is the novel's ending. I pin it in the middle because it is the novel's vortex--everything flows toward it because the entire novel derives its momentum from the ending.

NB: I don't always use a cork board. Sometimes I use notecards and a notecard binder. Other times, I use a whiteboard.)

Tuesday, April 10, 2018

The Cottage Kitchen, cookbook review

The Cottage Kitchen By Marte Marie Forberg

When I received this cookbook, I fell in love with the sumptuous photography. And my husband, who loves paging through cookbooks marking the foods he wants me to make, fell in love with the Steak and Cheese Pie. It is delicious. I’ve already made it twice at his request. I expect to be making it again for his birthday dinner in June.

The cookbook is an interesting blend of Norwegian and European foods and includes everything from Truffled Vegetable Toad-in-the-Hole to Norwegian Apple Trifle.

I also made the Leek and Cheese Gratin, and it was fantastic. I was excited to try the Potato Soup because it’s one of my favorite foods. However, it was a bit of a disaster. I was concerned looking over the recipe because the proportions of the ingredients didn’t seem correct. But I went ahead and made it. My soup didn’t even come out the same color as the soup in the photo. Though it’s possible I made an error, I suspect there are some typographical errors in the recipe. And I did find another recipe where one of the end steps, brushing the pastry with butter before popping it in the oven was left out—though the photo showed the pastry being brushed.

All in all, a fun cookbook. And it’s worth the price just for the Steak and Cheese Pie recipe.

I’d give it a 4 out of 5 stars.

I received this cookbook from Blogging for Books in exchange for a review.

Tuesday, December 5, 2017

Surviving a Knife Fight with a Zombie Biker Gang

I don’t often update my blog lately except for book reviews. Most of the time, it’s because I’m spending every free moment writing novels. (Writing blog posts takes longer than you’d think.)
But a lot of other things have been going on, so in the brief moment where I don’t feel like I’ve been beaten by a zombie biker gang and left for dead, I thought I’d write an update.

I’ve been having odd health issues for a while—okay, a year. But doctors haven’t been able to diagnose anything because my symptoms didn’t make sense. To make a frustrating story short, a spinal surgeon finally ordered an x-rayed and said, “Uh, wow…Are you sure you're not in a lot of pain? Your neck is really beaten up. It looks like the neck of an 80-year-old.” Gee, thanks.

So I found myself having surgery on a Saturday morning. I asked about recovery, medications, etc. The surgeon talked about how I might have trouble swallowing and talking, but he’d make sure I’d have this really great looking scar. And since I didn’t have folds in the skin of my neck, it would take extra surgical skill and coolness (my words, not his).

I am recovering and am the owner of two artificial discs, have had my vertebrae roto-rootered because of root nerve compressions, and have a very cool scar. Honestly, I don’t care if the scar looked like a railroad track disaster, but everyone else does. My chemist son oohs and ahs over the deep tissue sutures and especially the skin adhesive, waxing eloquent about plastic coating and hydrogen bonding (dipole-dipole interactions), London dispersion forces, van der Waal interactions, etc. (Yay! So excited about that, except, you know, not.) My husband’s retinal surgeon also took time to check out my scar and wanted to know who’d done the surgery since it was a class-act. (My husband had four emergency eye surgeries during this time. Neither of us was allowed to drive. So we are thankful to our daughter who came up from Atlanta—she and the chemist became the Patient Management Team.)

In the meantime, I try to write, which has been very difficult, especially on high doses of Percocet and Valium. However, the Valium dosages are going down and words are flowing again. I’m so very thankful. As is the rest of my family—there is no creature quite so difficult as a writer who’s not writing.

Yes, they often go in through the front of
the neck to do surgery on the spine.

Here’s a photo of my “very cool” scar. Honestly, right now it still looks a little gross—though I’m assured that won’t last. But I’d kind of like it to look gritty—because then I could make up this great story about how I survived a knife fight with a zombie biker gang using only my wits and a set of car keys. Alas, I had a very skilled surgeon.

Sadly, you can hardly see the scar. :(
Here’s me writing. It takes too much energy to get dressed first thing in the morning—so I write in my leopard pajamas. When I’m tired and my arms are burning, I get dressed for the day. Writers write—and you do whatever it takes.