Look into my eyes Deep in the you of me, of us. CKS
Due to my health I had to close my studio early for the June Toe River Arts Studio Tour where I was having the Celebrate Life Sale and was to continue the sale online after the tour.
I had a flare of the NMO. Along with Rituxan, I had 5 days of IV Steroids with an oral taper. I continue to struggle. Fatigue is an issue and my arms are still weaker than they were. I am better despite the struggles. My breathing is not the same since the flare either.
I am taking care of things one at a time. I have not been in the studio. I tried to be there a couple of short visits, mainly to print a few digital paintings to make sure my printer was still happy. I will admit it was exhausting.
Treatment changes to hopefully help keep my health more stable is moving Rituxan from 4 months to every 3 months. I must admit it is a little unsettling. I started at every 6 months and when that was not okay, I moved to every 4 months and for quite awhile was stable until i wasn’t. What happens if Rituxan completely fails? I don’t have a complete answer. I don’t have access to the new NMO approved drugs because I am not antibody positive.
What we are adding is pulse dosing with IV Steroids. This means once a month I will have 3 days of IV Steroids. Steroids do usually make me feel better. Steroids come with there own side effects I don’t like. It is a matter of weighing benefit vs. side effects.
pulmonology, we are doing testing, and depending on the outcome, we might be adding daytime oxygen in addition to my ventilator.
I am working to get back in the studio and hopeful to be there soon.
We are getting more and more pieces up on the CLFStudio Shop for the CELEBRATE LIFE SALE!!! Going on Now! Finally getting back to what we started during the studio tour.
“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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These drawings, such an important part of dreaming forward. Series, She Walks, Dreaming in Love
Often, when I dream, I am walking; dancing in the meadows in the fields, with sunflowers and lilies, most often. Recently, when I dream, I have full use of my hands and am a carpenter.
These dreams are so vivid, I sometimes wake up disoriented as my actual reality of limited use of my arms and hands, and no use of my legs abruptly makes itself aware.
Walking dreams, and dancing, began since i first became severely ill in 2015, and was initialized paralyzed with this disease. I learned this is very normal within paralysis community.
At first, I would cry, be confused, frustrated. Deep sighs of despair as I lie there in bed. I found it backwards. Dreaming was real, and waking was the nightmare.
To be honest, it was the measure of the stress and unknown at the time. Our world, mine and my family’s world was shaken. I was alive, and making progress in physical and occupational therapy. I was hopeful, and I needed cheerleaders to help me in this.
There were so many unknowns. How do you digest hearing “if your alive in 5 years, most likely will be blind and wheelchair bound.” then move into “well, we don’t know, and we don’t have the ability to help you.”
Feeling very alone in moments like these:
2016, Idaho. I am struggling in Occupational therapy. My therapist does a few evaluation tests on my arms/hands and finds my strength and grip strength has decreased.
She sends her recommendations to my primary care physician, who then sends it on to the neurologist. I am now sitting in the neurologists office with my sister in law at my side.
He says “The rehabilitation hospital does that.”
I say, apparently not because my occupational therapist sent it to my primary who sent it to you because she said you do it.”
“No, they do it.”
The OT’s recommendations and concerns went into what I call the Bermuda triangle of passing the buck into never-land of no action.
Now, look at this:
2017, North Carolina. I have been in physical therapy for a little while, mainly learning wheelchair skills, and learning to use the electronic stimulation device on the various muscle groups to help them fire and in turn help with muscle tone etc. Then things turned from these skills to re-evaluations, and then trunk control, and then the day came when my PT compassionately said that he ethically could not continue because PT was doing more harm than good. My body was clearly struggling and he was calling my doctor.
He scheduled me for two more visits; one to finish the final muscle groups with the EMS machine, and the second to teach my family how to help assist me in transferring from place to place.
That first last appointment came. My husband was with me, and I was not well. My PT just immediately taught my husband full assist transferring and even practiced it with our car. and told my husband, I am immediately calling her doctors.
Yes, and that is how 2017 began as I know it today. Only this time, doctors, nurses, home health, speech therapist, PT, OT, medical social worker; they all came on board,
and no one shrugged their shoulders and left us alone.
My family and I were hugged, were cared for, were taught, were provided for. We were provided with the physical, mental, and emotional tools to grieve, to be, to learn, to practice, and to become.
Now, I am a fighter, I am a glass-full kind of girl. Even in Idaho I found those moments. My PT’s and OT’s were amazing. I love them today, and hope I get to talk to them again. It is with that help, that love.