Tuesday, April 6, 2021
Tuesday, March 23, 2021
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.
Thursday, February 11, 2021
Thursday, December 24, 2020
Wednesday, September 16, 2020
So, I've written and illustrated this satirical open board book for myself, reaching to document the hurt. This is my work and observation apart from publishing houses.
If you do have a young person asking why, what, or how, maybe this piece will help your discussions. Or maybe like me, you'll find a measure of solace through this imagery. Solace in the: yes, this hurts everyone. What will we do? If you are able, you might volunteer, or contribute to the DNC, or support your local candidates running for change.
With the election days away, feel free to share this board book, near and far. And then VOTE!
Tuesday, September 1, 2020
And she's born today! I'm so happy to share this lullaby of peace with our first readers. I hope I Say a Little Prayer for You at Bedtime calms spirits and comforts as each settles down to sleep.
I actually wrote the work in the middle of the night, and it was during our collective mourning following the passing of the great Aretha Franklin. I will always hear her sing the title of this work, set by my delightful editor, Celia Lee.
Olivia Chin Mueller's soft illustrations of falling night create a perfect tone for the text. Her detailed strokes sweep across the imagery.
"Little ones curl up and rest, bless each home and tiny nest."
Whether you are curling up to sleep or "still zooming 'round," may this work find you and yours full of peace.
(The bear in the photo I received from my father on the day I was born. She's about to turn 56!)