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Breathing in and breathing out

in the breathing in, give rest

in the breathing out, give rest.

muscle and nerves. static

there is a cycle to the static.

indeterminate; string and cans.

B/W me 2018, feature image, me today

there is a cycle to hope,
to joy, to grief, frustration, and fears.

and there is hope.
and there is
thankfulness.

Today, I receive a new machine. new to many anyway. By happenstance when i needed a new feeding tube pump the company sent a respiratory therapist to bring the feeding tube pump.

While she didn’t know much about feeding tube pump she spotting my auto-pap machine and asked me how I was doing. I was truthful. I said I can’t use it. I try from time to time but it doesn’t work.

and I told her what I was experiencing.
She asked more questions.
Spent time, and surprised me
as we talked.

She said she was going to talk to my doctor because she didn’t think a regular bi-pap was right either that a noninvasive ventilation would be better for me.

I was confused but said thank you okay, and went on. I received a letter in the mail stated insurance had approved the new machine. In speaking again I asked again, so is this the bipap the original respiratory therapist 2 years ago wanted but couldn’t get because of i surance?

No, this machine is better. it is bi-level but also different. This is noninvasive ventilation.

I am simplifying the conversation here, but today she brought the new machine.

Can I say how much I love it already

here is the skinny – so on a regular basis my finger pulse/ox is between 91 and 93, and can be 94-95. My pulse is most often in the 90 and 100’s. but i still constantly have headaches. which 2 years ago i was told by RT that that was the build up of carbon dioxide.

I do not have lung disease. its my muscles, and just like my wheelchair provides me the assistance I need to get around, a machine like this can provide my lung muscle the assistance they need to do what they do best, breathe.

After an hour on this today, my pulse/ox is 98% baby!!!! and my pulse was only 60!!! how is that for improvement.

I will be honest, I was skeptical because I tend to tell myself I am just whining. I am being a wimp. I need to ignore the headaches ignore the fog, ignore everything you think you feel because it must not be real.

I am sorry I still have a tendency to not believe my own self. as though one day I will just wake up all better, and prove my own brain who sometimes I admit, wouldn’t it be easier if therapy would fix this? if it were in my head?

But here we are today. A chance meeting with anoyher respiratory therapist who called my doctor and my doctor listen to this person, and I have know idea what has changed except a pandemic across the world, but insurance said yes. And this RT came and brought me the gift of filling mu lungs.

i am tearing up even now. Do you know how long it has been since I have felt the sensation of a breath, and I mean a deep breath. where I don’t feel scared because I can’t get that full feeling, and wondering and yes, getting scared when I see 91% because it means I am not getting good breath no matter what I do.

and my head beats myself up because I am supposed to be better, right? 91 is a perfectly safe number. Some of you may know what the heaviness feels like. neither feels as though you are breathing in nor getting air fully out, and that feeling that just builds. it is a horrible feeling.

Honestly it felt like I was slowly suffocating, but was too scared to be laughed at to use that word.

especially because i am doing well. You have no idea how strong I feel in comparison to the last 2 years. Rituxan has been such a miracle and a gift. I am so grateful I felt happy in just this.

But today. I am so thankful for this machine. You have no idea the anxiety in general that is lifted from my body. So, this week we celebrated National Doctors Day!

Thank you my medical team. This girl feels like she has one more tool in her tool belt to keep on this very cool journey called life. I didn’t realize how much and I didn’t realize this noninvasive machine really is the bomb. RT was right. and I am glad I trusted and did not say no. because I almost did. I almost said, “thank you, but no thank you, I will be okay for now.” I felt guilty.

These last few years have been such a gigantic difference between Idaho to NC. why this machine brings it up, i guess as the adage goes, you are sometimes the last person to see what others already see in you, inside and out, body, mind, and soul.

So, I wanted to share this link from 2017, my original journey in discovering my respiratory muscles were weakening. It is oddly timely because of the poem at the bottom.

https://crossingenres.com/day-8-of-the-photo-a-day-for-30-days-series-de9270f2bfa7

Opening virtually at dk Gallery is a new show “Hope is the Thing with Feathers” inspired by the poem by Emily Dickinson. I believe you will understand. because on this day, I got my new awesome machine, my Trilogy 100, please call her Sky Sky Blue; Sky for short. and if you read that post from 2017 I think you will understand.

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

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Song of Absorption

No blanket quiets
the fire in her belly —
faith unknown is she.

CKS

Brave — Haiku This
Originally published in Haiku Hub

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

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Let Your Light Shine Bright

I have a new favorite exercise, dance, make me smile song.
Its Lights Shine Bright by Toby Mac.

with that said, I wanted to share a lil’ something fun today.
Saying thank you – take 1 with Connie Elektra!
Saying thank you – take 2 with Connie Natural
and 3 – Toby Mac’s official video on YouTube of,
you guessed it, Lights shine Bright!

Ms. Connie Elektra!
Ms. Connie Natural! mwahahahaha!
Let your Light Shine! you are beautiful!

Enjoy!
paint much love, always,
Connie Karleta Sales
a.k.a. This Crooked Little Flower

*special thanks to my friend V for videoing and using her living room!

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Life in Haiku

life spent in the shade
loud cries rip bright my redness
— I damage undone.

CKS

*originally published in Haiku Hub

*feature image – Heal Me Open, breathe me color, 19″ x 13″, digital painting on paper, unframed, $250.00

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in her soul, there is stillness

joyous praise,
stirs humming
weaving Light.

this light
a thing done,
we shield,
we run.

We rest Your effort;
awhile we practice.
in stillness we rise;
abundant,
a thing done.

living the movement
shed free I AM!
emergent — doing as being;

Activation-Synthesis
Theory of Dreams

CKS

Activation-synthesis theory is a neurobiological explanation for the genesis of dreams first proposed in the late 1970s by J. Allan Hobson and Robert McCarley. According to their theory, dreams are what result when the cerebral cortex attempts to make sense of (or synthesize) the neural activity that is taking place in lower, less-advanced portions of the brain, like the brain stem.

The lower-lying structures of the brain are primarily involved in biological functioning necessary for survival and reproduction, while the cerebral cortex is responsible for more advanced activity, such as thought development and processing. (from Lesson transcript, Chapter 4, Lesson 7, instructor Chris Clause, Activation-Synthesis Theory of Dreams: Definition & Explanation)

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This time of year the days grow longer, and within my spiritual practice, I enter Lent, a time when we bury the Hallelujah. In action, we do not sing or use this word in daily life.

Lent, on the Christian Liturgical calendar, are 40 days mirroring the 40 days Jesus spent in the wilderness, before he began his ministry. Hallelujah is a word of praise in moment come, and Lent, moment become-ing.

Over the years of moving through this liturgical calendar of practice, seasons have evolved for me. Lent, used to be suffering, denial in a very physical sense. I fasted. I gave up physical things like chocolate. Things which made me feel apart of even though I really didn’t have much of a clue. But I did feel present with. while simultaneously still wrapping myself in the comforts of my fears; extreme shyness as a means of survival.

More and more my heart moves into stepping back and really asking, does this help me draw closer in relationship? to the God of my understanding, allowing the Light of Christ to move through me. Drawing me into physical relationship with you. people. Earth. Community. What does that look like?

I ask, where am I still piling over, creating false shyness? not allowing the stir humming; the doing being?

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Today, on the eve of the next 40 days, I know where I run. I shield the desires of my heart within old tapes telling me i can’t. in very loud shapes and forms.

These voices sing into me; they pound with fists made of belts, telling me the how of being in relationship, is vain and narcissistic. I stand still in the wilderness of the between; unable to leave my hearts desire, simultaneously burying it in playing dumb and incapable and quiet.

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This year, I am called to practice. I am called to give up this imposed stillness. My basic needs of survival are met today. I actively ask for help and do what I am able to meet my needs. My higher functioning is still working that out. to trust; myself and you.

I am responsible to you. I am again naked before you. letting go more of that onion as the saying goes. My go to answer is stating my desire and then negating it with “i don’t know what that looks like. . . “

I do know. My work in art and poetry is life living and sharing; struggling strong; flawed and imperfectly perfect.

Art and poetry befriended me as a little girl, and kept that stir humming inside my heart, and I lived. Today, I live well. I want you to have that kind of friendship too. In relationship within the creative process.

This year, I walk with my very old friend; rest belts of old tapes. thank you for your service. thank you for having tea with me. I know you helped me get to today. You helped me grow roots. Lets grow deeper in our dreams.

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

*feature image – in her soul there is stillness within the hours,
digital drawing, 4″ x 4″ ink, paper on wood, available

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gaze between us

Thunder and Light

Air stillness inhales
eyes of the entrapped cosmos
— before breath held just

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

Originally published in Haiku This!

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and she danced

into such winds
she laughed;
learning to play;
feeling her joy.
CKS

___________________________

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

*sold, private collector, 2020 – thank you!

*painted with Surface/Surface Pen with Sketchable and Rebelle 3

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Vantastic Dreaming

the Crooked Little Flower Studios traveling ART BUS!!!!!

My husband and I have been saving for an accessible van for a couple of years. With gifts from friends, we are closer now than ever. We are now at around 7K total. Yay! Realistically it will take approximately 15-20K to purchase an appropriate van (older, lower mileage, full-size van with lift, in good working conditioning.

!something like this!

These vans are almost impossible to finance because of their age, and anything newer is out of our price range. No problem! It does mean cash is the way. . .

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My art bus dream has been around for well before I was married. My initial dream was to convert a small school bus into an art studio and living space. I always saw so much potential in the public spaces where food could grow, and be available to everyone at all times.

Planting things that work well with the natural climate of an area or already grow wild in a place helps ensure the edible feasts to thrive without much upkeep or none at all.

My plan was to take my bus from place to place and fund the project by painting the people and activities along the way and having a big party and the funds raised would get me to the next place, and so on and so forth.

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Today, my Art Bus dream has changed a bit, but the overriding idea of going place to place and sharing in the Creative Process with others remains the same.

I want to share with as many people as I can. To speak, to create, together in those Creative Conversations; empowering and loving each other.

And we are on the verge of another beginning. My van will be immediately functional and also a blank slate to evolve and grow.

It will not only allow me to travel easier to medical appointments, but also enable me to carry on my love of sharing art with others. Currently, I rely on public transportation. They are wonderful people. I am so thankful for them. It does mean I am limited in where and what I can do.

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Your prayers are needed

Your positive vibes are needed

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Making up the financial shortfall is needed

  • Sponsorship – Would you or someone you know like to sponsor, or (a company or organization) part of the Art Bus and its endeavors?
  • Buy Art – Work is available through the Studio and through dk Gallery
  • PayPal.me – you can donate directly in any amount to support the Art Bus –
  • A VANtastic Dream Fundraiser – my friends are hosting a fundraiser – TBA

Collective envisioning energy, is needed:
Share – please share far and wide – viral is viral – and it works . Big Hugs!

Can you help Crooked Little Flower Studios in her dreaming? I look forward to meeting you out on the open road (after social distancing with the current Pandemic). I wish you safety and peace for you and your loved ones. Thank you.

In case we are meeting for the first time, here is a bit of my story: Connie’s Story

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

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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

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

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. If you want to read more on this, here is 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.

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