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Whats in a name

“After all, from my very childhood, I had understood that the artistic experience, at its highest, was actually a natural analogue of mystical experience. It produced a kind of intuitive perception of reality…I had always understood that art was contemplation, and that it involved the action of the highest faculties of [wo]man.”
The Visions of Thomas Merton


A friend shared the above quote with me.
My heart couldn’t agree more. And fitting in the now.

(originally written, 2020)

Friday was my Rituxan treatment, it went really well. Long day, happy day.

December was my Neuro checkup; to my surprise, my neurologist had something to talk about. He consults with other neuro specialists about my case. All come back with the same answer, Neuromyelitis Optica.

2015, when my first severe attack happened leaving me initially paralyzed, doctors then initially thought NMO. It is an autoimmune disease primarily attacking the optic nerves, and spinal cord. People with NMO often develop other autoimmune diseases, Lupus being one of the most common. Which fits what I experience.

Many with NMO stabilize pretty well on Rituxan, and like me, still have attacks. A few months ago, the first official treatment for NMO was approved by the FDA. This is huge! The early reports are showing very hopeful with patients not mostly stabilizing but actually not having further attacks. Meaning actual stability, actual remission. Like Rituxan it does not heal the damage already done, but prevention of further progression is beyond priceless.

It does not come without potential risk. Rituxan is a B cell deplete-r, this new treatment is also an immuno-suppressant, but it works differently.
The preponderance of evidence says NMO, and my neurologist feels it would be good to pursue this new treatment.

It’s a nasty disease. The very positive side are all the advancements in the past few years. In Idaho, we were given a Hope for the best, prepare for the worst scenario. Mortality used to be high; today, it has dropped significantly.

A future without the thought of the potential of being on a ventilator is, well, I have no words. I wrote about it in an article I wrote in CrossinGenres, Organ Donation and other difficult conversations.

After much discussion, we decided to increase Rituxan infusions first, before moving on to trying Solaris.

For now, I immerse myself in the Creative as I build energy as she reflects back and speaks. and, settle into this name, and the surprising mix of emotions even when this name has been around me since the beginning of this journey. Now official: NMO, Neuromyelitis Optica.

Today, 2023, there are 3 FDA approved treatment for NMOSD (Neuromyelitis Optica Spectrum Disorder, because it is an umbrella. However they are only approved for AQP4 antibody positive patients. I am negative. At this point I have received so much treatment it could be a “masked” negative. And, about a third of people test negative who are actually positive anyway. So there is that.

What this means is my neurologist would like me to have access to these treatments but I don’t. Since I recently had a flare and needed steroids, we are going to see about moving to Rituxan every three months instead of 4. Wish me luck at having access to this since every 3 months has not really been studied as far as we know. Once again my neurologist is consulting with another specialist. I appreciate so much my medical team here in NC.

Paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower

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4 thoughts on “Whats in a name

  1. I just had to leave my job due to NMO. I am hoping for disability. Prayers for you💚💚💚

    1. I am sorry. I just read and sounds like teaching was such a passion. I am sorry you had to leave your students. I am also glad you are taking care of yourself. My prayers are with you also. thanks for reaching out! <3 I look forward to continue reading your blog. and I hope you get disability and what you need. <3

      1. Thank you so much Connie. Really hoping for disability and I might just sub in the ISD that I live in. Thank you so much

      2. that sounds like a plan. I don’t know if it would apply to you at all, but Independent Living Services was really helpful for our family with some of our needs.

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