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? 

 

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! 

Nest

Lorie Ann Grover

 As we wait for vaccines, as we wait to be together, may our nesting nurture. 

Happy Holidays!

 

Satirical Open Board Book: WHAT HURTS EVERYONE

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! 

Author/Illustrator Lorie Ann Grover

Satirical Open Board Book

What Hurts Everyone 

2020

Happy Book Birthday: I Say a Little Prayer for You at Bedtime

 

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!)

I Say a Little Prayer for You at Bedtime

by Lorie Ann Grover

illustrated by Olivia Chin Mueller

Indiebound

Amazon

Barnes & Noble

Scholastic, Little Shepherd, September 1, 2020

Pre-sale: I Say a Little Prayer for You at Bedtime

I'm so happy to announce my next upcoming board book with Olivia Chin Mueller! Pre-sale orders are available for I Say a Little Prayer for You at Bedtime. I hope this comforting lullaby offers peace to your wee ones in this difficult time. 

One note: you might see a former cover still appearing on bookseller sites. No worries. The interior is the same, and the bears will make their way to your home. Thanks so much for your support! 

I Say a Little Prayer for You at Bedtime

by Lorie Ann Grover

illustrated by Olivia Chin Mueller

Indiebound

Amazon

Barnes & Noble

Scholastic, Little Shepherd, September 1, 2020