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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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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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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. . .

_____________________________________________________________

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.

_______________________________________________________

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.

___________________________________________________

Your prayers are needed

Your positive vibes are needed

________________________________________________

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

_________________________________________________

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

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She Walks, Dreaming in Love

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.

If you want to hear about one of those moments you can listen here:
https://soundcloud.com/radioboise/stray-theatre-december-24-2017-story-story-nights-dazed-and-confused-rocked-and-rolling-stories

So, what does it mean when I say, She Walks, dreaming in love?

Today, I enjoy those walking dreams. They are magical. I wake up in a smile and not tears. My limitations are everything and nothing simultaneously.

It is not easy. Don’t get me wrong – There is nothing about this that is easy. For my family, and for myself.

Life does continue. It does ease as we move through and adapt. Little by little equipment and routine happen.

We get to practice patience, and delayed gratification.

We get to greet the sun, and say hello to the moon. We get to walkabout in love, no matter what it looks like. My wheelchair walks for me, my computer talks for me. How cool is that.

and I am never out of reality, I am always dancing in the fields with the sunflowers and lilies; with dandelions wisping through my hair, caressing my cheeks.

These are what these drawings are. They are the dance of love, the dance of choice, and power. They are the dance of grief, the dance of the unknown.

They are my dreams. They are the simultaneous illness and life of my body.

They are the moments of never being alone.

They are the dance of dignity; created with all the limitations of this body. braces and Velcro, pillows and positioning belts, whatever it takes to dance.

She Walks, Dreaming in Love VI, 30 x 22 inch, paper, ink, graphite on paper, 2018
She Walks, Dreaming in Love II, 30 x 22 inch, paper, ink, graphite on paper, 2018
She Walks, Dreaming in Love I, 30 x 22 inch, paper, ink, graphite on paper, 2018

available through dk Gallery

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

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Stand where you are

for you have much richness
deep in the you; you are
;
even if it means lying down.

in rest there is life;
cool comfort,
joy in our stillness-es.

in our suffering
in our loss-es,
we reach into our each.

in our worn-ess,
in our despondency-s,
we are rich in offering
.

in our arms,
allowing the intimacy
of others into our lives;

we are rich.
you; are rich
in the all of y/ou/r illness-es,

we reach into the each;
and have much to offer;
humanity’s necessity;

stand where you are
even in lying down.

CKS

Definitely winding down; I am less than two weeks away from my next Rituxan Infusion. This time, I am looking forward to it. I wish it were yesterday.

This past six months has been the best six months in two years. Overall, I might be fatigued and worn down, but I am still able to get up in my chair, still able to do things that I otherwise would not be able to do for myself before.

I also am present. I am not trying to do more, not trying to push through, not trying to be better than I am. I am right where I am and that is where I shall remain for today.

I am using a new eye gaze set up, and that makes all the difference in my life. You have no idea how much energy conservation it provides me.

Drawing more by holding the pen in my mouth. lol, that is somethin’; try it sometime. It is fun, and a lot harder than it looks. Actually, I am not very good at it. My face muscles have a hard time keeping it in my mouth. But, it gives my arms a bit of rest. And, its fun, and makes me giggle.

My pen held in place by Velcro, it can’t fall out of my hand, so, a floppier wrist is not much of a bother, its my triceps, my major movement that gets slowed, heavy, and hard.

And, so I stand where I am, lying down, binge watching much tvany suggestions? – resting in the melody of this life, and enjoying it. At this point I would normally be frustrated and developing more depression and sadness.

And I am not. I am not depressed. I am not sad.

I am joyful. I am happy. I am excited about things to come. Things that are happening; new and continuing. I am happy in feeling more present in the lives of my loved ones.

Where are you standing today? What does your present look like? Mine looks like this, and I imagine it is wrapped in a lovely pink bow!

You are enough, and have so much to give to a world that needs the you, you are. My hope is to be a part of changing the conversation around being sick, and how we treat people who are ill, suffering, and dying. How we treat people.

Each time we act with pity, we take away a person’s power. Each time we dismiss someone because of their suffering-s, we take away their power.

Each time we act in amazement at an accomplishment; despite of; we take power. Each time we discount illness and suffering because of amazement in accomplishment; We set apart rather than bring together.

Too often we treat, and act as though a person must overcome, defy, get well, in order to have worth. We take power away.

All these are wonderful things. overcoming, defying, all this is not in and of itself a problem. But why isn’t living with and alongside of provided for, cared for and caressed?

In the heart of it, that is what happens in order to get to remission of an illness, the easement of a grief. and then there is living when remission and easement is not possible.

I am not not trying to live, I am not trying to be well. I am Connie, living with a rare disease, a future unknown, but its unknown for everyone, because we are not there yet.

I love this life, standing where I am.

please share today, and invite others.

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

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Art ~ Poetry ~ Life
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Looking forward into 2020; Looking back on a life living

I almost titled this “two years in” as a follow up and continuing from “One Year On“. What the title of this post will be at time of hitting publish, I don’t know. Hope you like it just the same.

I am proud that despite needing some time off, overall, I have blogged for you more regularly. I am happy to share, and even more happy you enjoy; and that these posts provide a moment of joy, support, beauty; whatever you need of it, I am glad we are hear together.

I live with a rare disease. I am proud the disease is stabilizing, and my family and I have settled into a pretty darn good place of adapting. This means life for everyone improves.

I am proud to have new friends from Microsoft. I had a blast with a crew coming out twice to my studio. and if you have seen what shown at their launch, here it is and know that there is another video to come in which my husband is writing the music for.

Beyond my wildest dreams never would I have thought I, Connie, lover of all things dirt, earth, and graphite, would evolve into a full-time digital artist. Loving the freedom, discovery; pushing the boundaries of digital art; and I am just getting started.

I am proud of my relationship with dk Gallery. A beautiful group of artists, and Donna and her team truly seek the best for their represented artists.

I am proud of my growing relationship with my tribe at PoetsArtists. Didi Menendez is a dynamic force, and also truly represents and seeks the best for this talented bunch of artists and poets. I look forward to 2020 and beyond.

I am proud to breathe, to smile, and my walkabout down Rebels Creek Road saying hello to my neighbors. How fun it is to feel the wind and the sun; to hear the creek and the birds, to watch the deer before me, and the random creatures and plant life all around me.

I am proud to ask for help; add to the arsenal of adaptive equipment and techniques to help life in its living. I am proud to take time for myself, and meet my needs, so life keeps living.

I am proud to be in awe of the sunrise, and equally in awe of the tears of grief, frustration, and fear. I am proud of the good days as equally of the bad days. Because I get to have days. How cool is that. They are my days that I get to love my family and my friends; new and old. Nothing could be more beautiful.

I am proud I live with this disease. Not overcoming, running away, defy odds or funny colored glasses.

Well, maybe I do live with rosy glasses, but I believe they are rosy because I just live. I don’t make them rosy. I don’t place false hope or place more worth in how I live. I believe they are rosy because its truth, and nothing else. I practice life. and in that, smiles abound through the all of it.

I am proud to finally be able to describe myself as tenacious, happy, motivated, and joyous without qualifiers like vanity and narcissism. I am equally proud to describe myself as anxious, fearful, doubtful, and confused without qualifiers like less-than and broken.

I am not broken. I am Connie Karleta Sales, passionate about art and life and opportunity to share.

And that, my friends, is the focus of 2020. Are you ready? Hold on tight, its bound to be a fun-wild-ride!

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

*Feature Image: Quiet of a Winter Lent II,
digital drawing, paper on wood panel, 4″ x 4″ x 7/8″,
available through dk Gallery

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