May This Day Be Well, 2023

 

Here I Am!

 

After a blog break, I'm back on site. Here's the skinny:

1. I'm still writing! I have an adult memoir, a poetry collection, two YA novels, a middle grade, and the conclusion for Firstborn percolating, plus a myriad of board books. 

2. I'm looking for representation by an agency interested in giving voice to a disabled person focusing on literary works. 

3. I've left Twitter in the upheaval of the site. 

4. After fourteen years, I'm currently no longer posting reviews of board books at readertotz. Co-founder and writer Joan Holub and I still make a call for ALA to recognize the board/novelty book format in their annual awards with the Dorothy Kunhardt Award. 

5. I'm creating more visual art which I hope to share here soon. 

6. My mentoring with Stony Book University for their Children's Lit Fellows Creative Writing Program is on hiatus following Covid closures. 

7. Physically, scleral lenses for extreme dry eyes were not compatible with my Sjogren's. And a year on hydroxychloroquine for lupus has created nerve damage. I may post more specifics in the future in case it would help another person piece together their own protocol.  

8. I am a grandmother of two now! Celebrations!

9. Having been in the sacred space of walking a beloved through death a year ago, I continue to read widely and search for truth and the beauty all around.

That's my quick catch up. Thanks for stopping by in our busy season.

May your day be well, and your night be well! xox

Shepherd: The Best Board Books to Cut Your Teeth On

I'm happy to share I've participated in Shepherd which is a beta site that lets you browse the personal picks of your favorite authors in one giant bookstore. My entry is: The Best Board Books to Cut Your Teeth On. While featuring my own board book, I Love All of Me, I was able to recommend five other titles, as well, and explain my choices. 

Basically, if you have a favorite book, it's possible that author has created their own list of recommends to keep you reading. Links make purchases easy. Here's Kirby Larson's and then Lois Lowery's separate lists they recommend. 

If you are an author or illustrator and interested in participating, you can jot an email to Ben Fox at forauthorsatshepherddotcom. Thanks for checking out Shepherd, and happy reading to you! 

Celebrations: Bank Street College Board Book Award

It's official! Bank Street College of Education has decided to begin acknowledging and awarding board books! My editor just zipped me the press release as she and I talked about this need in 2010. The award will be named: the Margaret Wise Brown Board Book Award for excellence in literature for very young children. Wonderful!

Here is a press release excerpt: 

The first prize will be awarded in the spring of 2023 for board books published or picture books adapted to board book format in 2021 and 2022. The award will be given every two years to a board book for infants and toddlers (ages 0-3).

“Criteria for selection will include books that promote interplay and engagement, incorporate rich
language, demonstrate a consideration for childhood development, and are constructed to withstand multiple encounters with little hands,” said Dr. Cynthia Weill, Director, Center for Children’s Literature, Bank Street College of Education.

Joan Holub and I, both board book author/illustrators, have been calling for a recognition of the board book format since 2009. Our aim at the readertotz blog has always been to raise the profile of board books for our first readers. We make a call to authors, illustrators, and publishers to create the best possible works as they introduce reading to our youngest ones. 

We have envisioned the American Library Association creating the Dorothy Kunhardt Award for the Outstanding Board or Novelty Book. Click here to see our facebook page. We would love to see Dorothy named as the creator of the beloved, first novelty book still in print: Pat the Bunny. 

Joan and I are thrilled Bank Street College is lifting this important format for all to see! Here's to future award recipients, the wee ones who will hold the works, and Bank Street College for their efforts. Bravo! 

New Beginnings

It feels like a new beginning as we emerge together. I'm ready for new experiences and new opportunities. Here's a new author photo to kick things off. Enjoy your own re-entry into society. May there be beauty all around! 

2021

Oxervate: side effects after two weeks

Sharing this in case others might be thinking of this treatment for neurotrophic keratitis. 

So, I'm two weeks into the Oxervate treatment. I'm using only one eye to type this update. My second shipment of medicine was just delivered in dry ice. 

Week One: The first week was painful. It's not a word that was ever used by the makers, pharmacist, or doctor. So there's that. It felt like a horse kicked me in the face. The sensation was in my sinuses, throat, nose, jaw, and eyes. Over-the-counter pain meds didn't have a strong impact. Hot and cold packs, saline drops, goggles, and waiting it out were my solutions. I was told the pain was from the nerves growing back. 

Week Two: The pain broke on day 8. Now it only feels like there are sticks in my eyes. I find I can do some work before 2 pm, alternating using one eye and then the other. As the hours progress in the day, the only solution is to close my eyes...and wait it out. I'm listening to audio books and podcasts. Occasionally, the intense pain returns, but it seems to ease after 24 hours. 

This is all quite different than what I expected. I've adjusted productivity hopes for these two months. And that relieves pressure. It helps to know if a second round for two months is needed, it won't be back-to-back with this one. Shew. There isn't enough info gathered by the manufacturers to know if lupus and Sjogren's are making the treatment more difficult for me. 

Onto week three, thankful for this drug and what it might do for my eyes. And maybe side effects will lessen soon? 

Update, 10/16/21

Folks from around the world are asking how the experience ended. So, I did complete the entire program. The pain sustained throughout the treatment, but there was healing. My eyes became less sensitive to harsh light. Dryness declined measurably. Nerves regrew. However, now as time has passed, I subjectively feel the advantages diminishing as my autoimmune diseases (lupus and Sjogren's) diminish the progress. The doctor would like a repeat treatment; however, he is giving me time before we begin. With coupons and subsidies, I truly only paid $50 for this incredibly expensive medication in the United States. I'll aim to post again, if I repeat Oxervate. Best to you, if you are beginning!  

 

Lupus, Sjogren's: Neurotrophic Keratitis and Oxervate

I haven't updated any information concerning my autoimmune diseases during the pandemic. Suddenly, the world was isolating, as well, and vigilance was needed for my weakened immune system. The main lupus drug was touted by some and tested repeatedly for efficacy against the coronavirus. The extensive purchases by governments blocked deliveries for lupus patients. Shipments were finally restored when hydroxychloroquine proved ineffective for Covid19. 

So, here we are again, as vaccinations extend, we are beginning to emerge. Folks with lupus and other diseases and conditions will continue to isolate as needed, but how wonderful to have the possibility of re-entering the stream on healthy days. Preferably cloudy ones. :)

I'm really posting today to say I'm going to begin Oxervate tomorrow. This FDA-approved treatment for neurotrophic keratitis will be for both eyes. Lupus and Sjogren's have killed the nerves in my cornea, which could lead to blindness and the need for a corneal transplant. I had no sensation when the doctor pulled a string across my open eye. Right now, I have light sensitivity and extreme dryness.

Oxervate is a cenegermin, a form of human nerve growth factor developed in a lab. Potentially, the nerves in my cornea will grow, work, and survive. 7 out of 10 patients are completely healed. 

It has taken 5 months to qualify and about 5 agencies working together to make this happen. The cost is enormous, but extensive coverage is provided, bringing my cost down to $100 for 8 weeks. Compared to what I can gather would be about $250,000 without insurance and assistance. 

 

I'll post again after a bit to share side-effects for the curious and others considering the treatment. Right now, I'm waiting for delivery which will arrive in dry ice. I'll be doing drops every 2 hours, 6 times a day, for 8 weeks. More soon!