All posts by sheilalynnkart

About sheilalynnkart

Mystified Creator. Gathering Wellness. My designs are for sale in Artist Shops at Threadless. Find my portfolio archives at sheilalynnkart.com. FreeThings4U and Patrons Only can be found here: https://www.patreon.com/SheilaLynnKart View all posts by sheilalynnkart →

The Right Words, The Right Time

October 23, 2014The Power of Prose~Good Readssheilalynnkart

The written word…can take us to inspiring and validating places. Shapes and lines combine to give voice to our experiences while reflecting our intentions and recording our dreams.

New Life, No Instructions~by Gail Caldwell is an appealingly comfortable story about how we react when we find ourselves fully submerged in Plan B without full knowledge that Plan A has been discarded.

Ms. Caldwell says, “Most of all I wrote this story because I wanted to say something about hope and the absence of it, and how we keep going anyway. About second chances, and how they’re sometimes buried amid the dross, even when you’re poised for the downhill grade, the narrative can always turn out to be a different story from what you expected….as long as I keep moving, I am alright. …Sometimes force is all you have and that has to be enough.”

She does not speak of the force with which we compel others to action but the force that is the momentum we need to keep ourselves in motion. It is a compulsion which defies stagnation.

Companionably coping,with words we confront our fears and find our courage.

“We do get up, of course.,which seems a wonder. People stumble forth from whole scale atrocities and personal tragedies and ordinary miseries and find a way to go to the store, talk to God, buy bulbs for the fall planting. And yet I sensed that I had not just been pummeled by death but reshaped by it, poised now at some crucial junction between darkness and endurance, which is the realists’ version of hope. It seemed that every gesture we make to way lay loss – a walk taken, a symphony heard or composed- was either a trick on death or a transient reprieve, and I felt so saddened from this insight that I didn’t have much fight left in me. I remember trying to describe the state to friends and getting a smile of sympathetic, slightly vacant concern, as though they cared about but could not envision this forest where I had landed. I am trying not to generalize despair I said, but I didn’t mean I was depressed- I wanted to explain the color of the world now. ….Grief without hope is desolation, my therapist said to me one day, and I knew he was right. That I had to crawl out of where I was and somehow find a way to keep going.” ~ G.C.

Bumping along the path paved with words we collide with the limitations of our humanity as often as we soar with the tenacity of our souls. With these same words jiggled, jumbled, and fumbled into a new order, we have the power to re-paint the scene with a revamped self-portrait scotch-taped onto a hope-seasoned landscape until we, ourselves, believe it enough that our hastily mixed water and flour paste cements that new vision to the dawning of the day.

If you’ve been inspired, comforted, or validated by a book you’ve read recently,please tell us something about it in the comment thread below. Thank you

Project Business, Budget, and Forms

October 18, 2014Funding for Art For Arachnoiditissheilalynnkart

Independent Account for The Art For Arachnoiditis Project

Funds are housed in the Art For Arachnoiditis Project account until they are applied to project expenses.

The estimated budget is determined by a best-estimate practice. The budget is adjusted as actual costs are applied. Travel expenses fluctuate with industry rates.

Art For Arachnoiditis Project Pledge Form

Please use this form if you are a business or individual who would like to make a monetary pledge to the Art For Arachnoiditis Project at SheilaLynnK Art Studio.

Some businesses prefer to Become a Sponsor of the project.

Other individuals prefer to buy merchandise to support the project.

Arachnoiditis Art published September 2014

October 7, 2014Awareness Artsheilalynnkart

Art For Arachnoiditis Awareness — Cover Art & Essay The Journal of Pain & Palliative Care Pharmacotherapy Sep 2014

This artwork and story were first licensed to Pain Exhibit.org to promote Arachnoiditis Awareness in 2013. Started in 2010 and completed in 2012, the 36″ x 36″ acrylic painting on stretched canvas was featured in the first video of the 2014 AIM|Hatchfund campaign to raise funds for the Arachnoiditis Survivor Portrait Project at SheilaLynnK Art Studio.

This painting was also displayed on a Sprint jumbotron digital screen in Times Square as part of the Art Takes Times Square 2012 campaign via Artists Wanted and has been featured in American News Report National Pain Report.September 2013

This last piece in the Facing Phases Series(2009-2012) is dedicated to fellow adhesive arachnoiditis patients and the support networks that keep them going.

The Story:

Honesty & Hope (a.k.a. No Pain, No Gain)
This painting is a self-portrait of my adaptation to life with arachnoiditis.

I was a healthy, active, productive member of my community. I was a teacher, youth advocate, and artist. I have been a single parent of three amazing children since 1994.

In March 2007, at the age of 37, I had a routine right knee arthroscopy to correct an established work-related injury. During this procedure I was given spinal anesthesia which contained 5% lidocaine, w/dextrose and epinephrine (xylocaine). My knee healed well. In the weeks that followed the procedure my coordination and balance began to deteriorate. I began having excruciating pain in both ears. I could hear everything. I had persistent nausea and developed perpetual positional headaches. These headaches were relieved only when hanging upside down over the side of my bed. I had to lie down on my office floor to continue my work obligations. I managed to do this through the
summer months but eventually was forced to take a medical leave of absence.

The left side of my face and body began to go numb. My left leg would give out unexpectedly. Sometimes I couldn’t tell if my foot was touching the ground. Other times it felt like I was walking on thistles in my bare feet. While sitting at my desk it felt like my leg was laying in a puddle of ice water.

I was diagnosed with gastroparesis of unknown origin. I developed painful muscle spasms in my extremities. Painful spasms around my shoulder blades restricted the range of motion in my arms. At night I would wake up unable to move them at all. I developed persistent pelvic pain, abdominal pain, and constant pain through my left ribcage. By November of 2007, I could not walk from my front door to my car without assistance. Too much time in a vertical position resulted in bowel and bladder dysfunction. The crippling headaches induced vomiting. My legs would not hold me up. I developed sacroiliitis/sacroiliac joint dysfunction. This causes pain and inflammation in the back of the hip joints and pinches the sciatic nerve.

I lost my job. I could no longer maintain my three story house or take care of our beloved epileptic golden retriever, Lily. We could not find anyone else willing to take on that responsibility. She had to be put down. I was physically unable to stop the neighbors rescued Rottweiler from tormenting my daughter on the way home from school when it got loose. I was unable to stop those dogs from killing our cat, Sophie. My children were finishing high school and I missed out on the majority of that process.

Local practitioners were unable to solve the mystery of my symptoms. Finally, in 2010, I received a conclusive diagnosis. The specialist told me that I had spinal adhesive arachnoiditis in the lumbar and thoracic spine. My early symptoms were apparently caused by effects similar to chemical meningitis. The anesthesia used in my procedure was not FDA approved for spinal use. It left significant nerve damage and scarring in the thoracic and lumbar region of my spine. This scarring had obstructed the rotation of cerebrospinal fluid. It was pooling in my lumbar region and thoracic region. It had formed a pseudocyst which was displacing the spinal cord in the thoracic region (in between my shoulder blades). There was not enough fluid around my brain. This had caused significant bilateral trauma to the nerves in my ears. There was scarring in the tip of my spinal cord from a needle that had penetrated the conus. Spinal anesthesia is NOT guided
by fluoroscopy. I was told that there is no cure for this condition. Subsequent diagnostic procedures: spinal tap, epidural blood patch, and radionucleide cisternogram had added to this injury to my spinal nerves, spinal cord, and central nervous system. My body now interprets cold as pain. I was informed that there is no cure for this condition.

The specialist deemed me permanently disabled. Vocational Rehabilation determined that I was unemployable. For the rest of my life I will have to lie down every three hours to control spinal fluid levels. I use an inversion table every day. Opiates do NOT relieve the nerve pain that I experience. My children and I relocated to a much smaller, single story, home about two miles from the pain management clinic. Accommodations learned there permitted me to regain some range of motion and some strength in my lower extremities. Time management has become a crucial part of my adaptation to life with arachnoiditis. Art and horizontal time spent with my infant Grandson healed my heart and mind. Being Honest, every Hope and every Gain is tainted by the knowledge that it will be accompanied by pain, ALWAYS.

I am currently working with vocational rehabilitation to meet my self-employment goals in my live/work studio space.~sheila l. kalkbrenner

Art By Arachnoiditis Survivors

Survivors are invited to submit digital images of their original artwork for consideration for display in this gallery and at the Art For Arachnoiditis Project FIRST Public Art Exhibit at the Fountain Arts Center, Belmont, NY April 2015. Please submit your entry and Registration Form by February 15, 2015.

Prints or Recordings of your original art work may be shown in the exhibit AND in the gallery of Art By Survivors at artforarachnoiditis.org Submit digital images or recordings of your original artwork [drawings, paintings, sculptures, photography, collage, fabric art, poetry, creative non-fiction,music, video, etc.] via Email to: sheilalynnk@yahoo.com Subject: Add my Art For musical and/or video entries…please specify in your email message that you have a performance piece (under 3 minutes) that you would like included in the project. Additional submission instructions will be arranged. To Donate your 2D work for reprint and sale via www.sheilalynnkart.com to benefit the Art For Arachnoiditis Project ; Please request the Art In-Kind Form. With your signature, the Art In-Kind form will give license for reproduction for the duration of the project without infringing on your ownership or copyright. You will be given the opportunity to declare your name listed with the work or to remain anonymous. Artworks CANNOT be used for this resale purpose without your explicit written consent.

GALLERY

asapLogoNicolaReeves — Awareness Logo designed by Nicola Reeves

celestialTransformations.SE.H. — “Celesstial Transformations” photo by Sarah Elizabeth Hirschle

FreedomVtimeSLK — “Freedom” sketch by Sheila

MendingMattersMandalaSLK — Mending Matters Mandala ~sheila

ribbonL.F. — Awareness Ribbon designed by Linda Funsch

upperWanakaNicolaReeves — UpperWanaka ~Nicola Reeves

TowardsGlendhuNicolaReeves — Towards Glendhu~Nicola Reeves

PipelineNicolaReeves — Pipeline ~Nicola Reeves

hayTedderNicolaReeves — Hay Tedder ~Nicola Reeves

FristSnowManiotoNicolaReeves — First Snow Manioto ~Nicola Reeves

1970miniNicolaReeves — 1970 Mini ~Nicola Reeves

The Album of the Survivors~Collage Four

October 2, 2014The Album of the Arachnoiditis Survivorssheilalynnkart

Each of us meets the day of the Survivor in our own way and in our own time. We don’t have to do it alone.

If you’d like to be included in the Arachnoiditis Survivor album & collage, please submit a quality image of yourself and your name, as you would like it to appear, in the comments below or email to: sheilalynnk@yahoo.com, subject line: Add me to the Album

Or join the Album of the Survivors on Facebook.

Let us know the name of the photographer so that they can receive photo credit for the image. Selfies are also welcome. POSTING THE IMAGE HERE AND ON THE FACEBOOK LINK MEANS THAT YOU GIVE CONSENT FOR IT TO BE SHARED WITH THE PUBLIC AS PART OF THE ART FOR ARACHNOIDITIS PROJECT. THIS CONSENT APPLIES ONLY TO THE IMAGE YOU POST HERE. No other images or information about you will be shared or publicized without your explicit written consent.

The Album of the Survivors will appear in the Art For Arachnoiditis Project book, Still Standing, Sometimes, on the Art For Arachnoiditis Tab at sheilalynnkart.com, on the Art For Arachnoiditis Facebook page, and in the Public Arachnoiditis Awareness Art Exhibition.

The Art For Arachnoiditis Project is An Art, Adaptability and Empowerment Project about Living With Arachnoiditis. It is a Charitable Project to empower Survivors via participation in the arts Hosted by SheilaLynnK Art Studio.

As part of the Art For Arachnoiditis Project, FREE Conceptual Portrait projects will be scheduled on a first come-first served basis. Send the registration form to sign up to have your 16″ x 20″, Graphite on Paper, Conceptual Portrait Drawn by Sheila and included in the Public Art Exhibit (you will get an 11″ x 14″ copy to keep)and/or have your story added to the Art For Arachnoiditis Websites and the book.

Stuck on Survive

September 24, 2014Survivors' StoriesArachnoiditis, arachnoiditis survivor, Art for Arachnoiditis, epidural steroid injections, Fungal Infection, fungal meningitis, Jack Pavlekovich, NECCsheilalynnkart

Since September 2012 former Police Officer and Musician, Jack Pavlekovich, with the help of his family, has been struggling to survive.

Jack last performed live with his band and his daughter in September 2012, when he received an epidural steroid injection shortly before the performance. Jack had previously had back surgery to repair/manage an injury that he suffered in the line of duty as a Police Officer in South Bend. Although he had several epidural steroid injections which helped manage his back pain, eventually his condition warranted a neurostimulator implant in his spine.

He experienced some relief from this procedure. Eventually, the implant stopped helping. Jack again received epidural steroid injections to manage his pain. Although the first series of injections did not seem to have any adverse effects initially, the last two he received at OSMC in September 2012 were contaminated (at NECC) and he developed life-threatening Fungal Meningitis. 751 other people also received these contaminated products. To exacerbate the initial fungal assault; the neurostimulator implanted in his spine had broken and was actually pumping this fungus into his nervous system as well as his spinal fluid. After intense and expensive treatment including on and off treatments with voriconazole, an anti-fungal medication , from October 2012 to April 2013; he showed signs of improvement with an all-clear for fungal presence in the spinal fluid.

However, all of his symptoms resumed shortly after he had completed the voriconazole treatments. He was sick off and on for months. Doctors could not figure out what was wrong. His chart stated that the fungus had been cured. Finally, in March 2014 a Beta d Glucan Assay was conducted. Jack and his family were informed that he was the third one to be RE-INFECTED with the fungal meningitis. He was put on a different anti-fungal medication, Itraconazole to fight it. Jack has spent a great deal of time in the hospital and in ICU. His spleen had to be removed as a result of this attack on his body.

Over the weekend, I had the honor of meeting Jack and his family for inclusion in the Arachnoiditis Survivor Portrait Project. After coming face-to-face with death, Jack and his wife Tammy strive to resume stability for their two children, Ashlee and Jamie. As a result of this preventable near-fatal illness, Jack and Tammy expressed concerns that the girls, “have had to grow up too fast.”

Witness to their father’s painful and debilitating experiences, each of them is attempting to find a way to cope.Behind her lovely smile, Ashlee seems to have developed a quiet strength which permits her to keep her own counsel about her fears while offering an arm to assist whenever she can.

Writing and illustrating her own book about their story, Jamie has turned to art as a means to describe this battle to others and allows her bright sense of humor to ease the weight of this reality.

Jack and Tammy have replaced “date night” with Doctor’s appointments.

Researching complex medical information pertaining to Jack’s case and faced with very tough decisions about: his care, the financial realities associated with this combination of insult, illness, and injury, and how she can keep her family strong, Tammy, who is coping with some stressful medical concerns of her own; continues to seek answers . Sep 20, 2014

For Jack, it is painful to see how this affects his family. He knows his children are always looking for the father they know is in there somewhere. With so many variables churning around his medical outcome, it is difficult to reassure him that he will find new ways to be an active participant parenting his children. Illness and injury of this magnitude elicit a daily , moment-by-moment fight to inhabit an injured body and a wounded soul attempting to walk in the land of the living while we dangle our digits over the precipice of the grave. Grace is scarce. Time is limited. Anger is abundant. Hope is fragile.

Recently, Jack was informed that this fungal infection in his spine has resulted in Spinal Adhesive Arachnoiditis in his neck and the L3 to L5 levels in the lumbar spine. Faced with the pain and isolation of this double whammy of medical injury, Jack says that his Family, their cat-Hailee, His Music, and His Computer are the things that keep his interest and help him to not give up. Jack has asked that these elements be represented in his Conceptual Portrait. The portrait will be shown in progress on the Art For Arachnoiditis Facebook Page and displayed in the public art Exhibit to increase Arachnoiditis awareness. Jack will receive a free copy of the drawing to keep.

It is expected that Jack and his family will always have to monitor, and sometimes seek treatment, for signs of a recurrence of the fungal infection. Now, Jack and his family will also have to learn to navigate the ins and outs of living with Arachnoiditis. Litigation promises some level of financial assistance however, any compensation award distributed by NECC will have to be divided among the 750+ people affected by the injurious, contaminated products in these spinal injections.

The neurological injuries and extensive medical treatments he has endured as a result of this infection have damaged his vocal cords and make it difficult for Jack to play his guitar or remember the notes and order of the music. A long time musician and performer in the band, Chantilly Lace, Jack misses creating music and sharing it with others.

I believe healing can be found in the arts. Perhaps there are adaptive methods, tools, or equipment that will permit him to play again when he is ready.

~Sheila L. Kalkbrenner

Not All Scars Are Visible

September 24, 2014Survivors' Storiesarachnoidits survivorsheilalynnkart

by Melanie Lamb

September 5, 2011 at 10:01pm

Not all scars are visible. Not all wounds heal.

There are many faces to those of us who suffer from what is called Arachnoiditis. There are the faces of those with arachnoiditis cysts, and the faces of those with what is referred to as Adhesive Arachnoiditis- empty sac sign. There is no cure.

This is my face.

I have Adhesive Arachnoidits- empty sac sign.

In October of 2009 I underwent a common procedure called a Lumbar Puncture. This was needed to check the pressure of my spinal cord fluid as I had been diagnosed several months prior with what is a called Psuedo Tumor Cerebri. That’s right, basically a false tumor. This day changed my life.

I was uneasy. The whole morning had been a mess. The hospital had lost my files. It took almost three hours to get into the surgery room. During previous punctures, I had been sedated. Not this time. No sedation, not even a muscle relaxer to calm my nerves for this procedure. The physician performing this procedure did not have an assistant to help him reach for the tools on the surgical table. I had a needle in my spine attached to a tube to record the pressure. At one point the physician couldn’t reach a specific tool he needed to finish the procedure. As he reached for the table, he got off balance, and in turn jammed the needle into my spinal cord nerve roots. The sensation was beyond any torture I could have imagined. I screamed a silent scream of agony. Tears flooded my face. My best friend Kevin, was with me during the procedure, holding onto my hands. The torture had only begun. I am not sure how Kevin survived the event, let alone me in all honesty. Before the physician could remove the needle, he had elevated the table. That motion jarred the needle in my spine even more. The rest is a history of hell. It began with peripheral nerve root damage. Every day of my life, since that procedure, I have experience some degree of agonizing pain. It erupts inside of my body. What level of hell I will be forced to endure, on any given day I do not know.

The lower two segments of my spinal cord nerves are encased in scar tissue. This scar tissue starves the nerves of the essential nutrients derived from my cerebral fluid. The very life is being squeezed out of them. The spinal cord nerve’s purpose is to feed and control specific organs and muscles and send information to my brain. The scar tissue has devoured them; attaching itself to the wall of my dural sac, leaving me with what is referred to as Empty Sac Sign. Meaning if you opened up my spine, you would not see that part of my spinal cord.

Empty Sac Sign, causes the body to suffer stages of shock. It is a repeated trauma; muscles ripping uncontrollably at times, as the nerves begin to misfire. Without exaggeration, I feel every fiber separate.

For most people, when they walk or sit and lie down, their spinal cord moves, glides up and down. Mine does not, as the nerves are adhered to one another, hindering certain movements, and causing pain with all other movements. There is a burning within that never subsides. I repeat, NEVER. It is not like someone lit a match inside you, or the burning associated with a torn muscle. It is as if a volcano were erupting from deep within. The lava consumes every fiber of my being.

There are many by-products of having this debilitating condition. Atrophy, RSD (Reflex Sympathetic Dystrophy Syndrome) Drop foot and Neuropathy are just a few. Loss of range of motion, discoloration, swelling, extreme burning, and the feeling of bugs crawling under your skin, muscle loss which causes weakness, become a part of life. Sometimes the skin sensitivity is so extreme, even wearing clothes is too much to bear. Sustaining mental focus due to unrelenting pain is a constant battle. Sleep is disrupted every night. Even while medicated, I can only sleep a few hours. The process of waking causes stimulation. Stimulation causes spasms, deep inner spasms. Spasms cause pain. The burning sets in. It is a never ending cycle.

The spine can never be entered again, not even with the tiniest of needles as it will only irritate the nerves and progress the growth of scar tissue.

Sitting irritates the nerves. Standing irritates the nerves. Walking irritates the nerves. Attempting to take on what would normally be considered as everyday tasks, irritate the nerves. When these nerves become irritated, swollen, compressed even more on to one another, the internal hell heightens to an indescribable level. For caretakers, family and friends coping with another’s pain is unbearable. Helplessness surrounds us all during this time.

Days are difficult to plan. I can no longer depend on a schedule, because my body will dictate otherwise. I reach a point where I wonder to myself; will I be able to walk today, and for how long? It is a painful process, both mentally and physically. Losing the mobility and strength of my muscles is agonizing. There is nothing to numb the pain during this process. I fight the resistance in each step with all I have and, do my best to smile to shelter those I love from my pain.

I used to run. I used to ride horses. I used to love to go for rides in a jeep, of course top down. I used to run tracks. I used to train dogs that have been deployed and, served internationally providing security and protection for us all. I used to be on the end of a leash.

Things are different now. I am learning to pace myself. Learning to work from the bench so to speak; “sit on the porch” as my oldest son says.

I continue to give myself to God each and every day to work His will through me, to help others through me, to touch the lives of others. I tell myself every day, that it is possible this happened to me instead of the little old lady or man that may not have survived it, or maybe I took the place of a child on that day. I tell myself God has reason in all of it and his Son went through more than this for me. It is the least I can take on.

As a final note I must acknowledge and thank the many care-givers of those who suffer from this debilitating and torturous condition. You simply save us and get us through, when we feel we can’t take the pain one more minute. Without you- we simply could not survive.

My name is Melanie. I am a child of God. I am a mother of three children. I am a Grandmother (Gammy Mel). I am a K9 Trainer and Handler Instructor.

Every day is a new day, and this is my now.

“I can do all things through Christ which strengtheneth me.”

Philippians 4:13

~Melanie Lamb

For more information about Arachnoiditis I found these websites to be very helpful and informative.

http://www.burtonreport.com/infspine/adhesarachanatomy.htm

http://www.lifewitharachnoiditis.com/

http://www.arachnoiditis.info/about_arach_main.html

http://www.arachnoiditisusa.com/

http://www.youtube.com/watch?v=QL6z1DnoJao&playnext=1&list=PLFE7D04E18D51AE59

http://www.youtube.com/watch?v=NxsenvqYClw (this is a video of me going through an episode)

Follow Melanie’s arachnoiditis and RSD/CRPS story on her facebook page.

Sample Survivor Portrait In Progress

August 27, 2014Awareness Artsheilalynnkart

We join this project already in progress…

Hanging on to summer as long as I can, such as it is in upstate New York this year, I have been spending as much time as possible outside, away from my computer, as much as I can.

Although I have not worked on it since May 2014, I have resumed working on it with intentions to complete the drawing by September 1st…in time for the Wellsville Art Association Annual Member Show. I am not an expert in the use of colored pencils. I am enjoying exploring this media.

On a more personal note, this image has become a composite of multiple characters and sacred geometry & colors which influence, empower, and reflect me on this journey into the world of arachnoiditis. I explored this symbolism during the Root:30 Day Journal Project with Lisa Sonora Beam and The Mandala Project from my show Around Now In A Square Time.

The Platypus is a new totem which represents a new dimension of the character of the person I am now.

The Arachnoiditis Survivor Portrait Project has been designed to permit me to make composite drawings of other survivors. Using imagery of traits, characteristics, and interests, these portraits will depict an image of the person NOT the “patient”. When I have accumulated what feels like enough of these drawings, I will host a public exhibition to increase awareness and prevention efforts. The collection will become a portrait of what it means to live with arachnoiditis. Hopefully, this will take place some time in 2015.

My first interview is with an Arachnoiditis Survivor in South Bend, Indiana. He is also a survivor of the 2012 Fungal Meningitis Outbreak. I am looking forward to meeting him and hope that I can do justice to his story. ~Sheila L. Kalkbrenner

Pampered Chef and Art For Arachnoiditis

August 1, 2014Funding for Art For Arachnoiditissheilalynnkart

Pampered Chef Fundraiser For:

Art for Arachnoiditis Survivor Project

WHO:

Sheila Kalkbrenner & Jessikah Taylor on Behalf of All Arachnoiditis Patients Invite you to Join Us in this Fundraising Effort. Please Share and Invite others to Join The Fundraiser! There are no markups in Pampered Chef Products during Fundraisers:) So Shop Confidently as ALL our products come with a “Love it” guarantee, most have a 1,3 or 5 year warranty and many have Lifetime warranty!

WHAT:

Support Arachnoiditis Efforts When You Stock up and Simplify your Kitchen with Quality Pampered Chef Products! Order August 1-15, 2014. Make sure to add your Order to the “Art for Arachnoiditis” Show onwww.PamperedChef.biz/JessikahTaylor

WHY:

This is a Fundraiser to help raise the much needed funds for the

Art for Arachnoiditis: Survivor Project

Which will promote Arachnoiditis Awareness, Document Daily Struggles and the Permanent Disability that Arachnoiditis Patients Suffer.

Through Art we Hope to Open the Eyes of the Public to the Arachnoiditis Cause including Awareness, Education and Prevention.

Sheila Kalkbrenner a New York Artist with Arachnoiditis, will be interviewing, photographing and then making a Conceptual Portrait of Volunteer Arachnoiditis Patients. Through these Conceptual Pieces, the artist will convey what it’s like to live with Arachnoiditis while Showing the Humanity which Still Resides within the Arachnoiditis Patient.

The Collection of Portraits will be Shown in an Exhibit Dedicated to Arachnoiditis Awareness and Prevention.

WHEN:

•Fundraiser Date: Aug 1-15, 2014

WHERE:

•Order Online at:

www.PamperedChef.biz/JessikahTaylor

*Add Order to the Show setup for

“Art for Arachnoiditis”.

CONTINUE TO SUPPORT:

•After you Order through the Fundraiser. Please consider Hosting Your Own Pampered Chef Show. You will get the Monthly Host Offer and FREE Products, Half-Off Products and Discounts on everything else you buy! Plus you’ll get 10% off any other purchases for a year!

BOOK Your Own Show During the Fundraiser and an ADDITIONAL Donation will be made to support Art for Arachnoiditis!

Contact your Pampered Chef Consultant to set up your own show

•Pampered Chef Consultant: 741412 Jessikah Taylor (502)797-8955

www.PamperedChef.biz/JessikahTaylor

“Understanding Arachnoiditis: Please Hear Me” ~Dawn M. G.

July 14, 2014Creative Non-Fiction, Survivors' Storiessheilalynnkart

People sometimes just don’t get that yes I make sacrifices daily to live and do things but will pay for it greatly. And that normally causes me to crash and have a few days rest. Yes when I push I can do something I really set my mind to but it comes with a price. When I say no, I can’t do that, yes, I may have done it in the past, but i paid for it dearly! And it’s not that I don’t want to, it’s just that I realize my limits and capabilities.

Yes, it seems like I always do try and do the fun stuff, but don’t push myself as hard to do things I don’t find as important as making memories and living an enjoyable life. And yes I say no to stuff that is normally everyday stuff because I’m usually paying for just trying to be there to have somewhat of a life. It just doesn’t seem to make the connection there. This is when the Spoon Theory comes in handy. But some people just don’t listen no matter how many times you tell them, and won’t take the time to read and understand.

Yes, I do have new explanations for symptoms and pains, because yes, I am always learning new stuff about why I get this pain, this symptom, why I should avoid this because it leads to that, I need to do this now because it can cause that, and I do this now or don’t do that because it’s happened in the past and I’ve learned my lesson, and no I have absolutely no idea about the future. I live in the moment. I have absolutely no choice.

Yes I’m having to learn how to do things differently, and I’m learning constantly my cans and cant’s. Yes my moods change frequently because I can feel a little better today than yesterday, which made me feel like I accomplished something, but tomorrow I’m going to be cranky and depressed because I’m going to be feeling absolutely awful from doing the smallest things, and yes I’ll be full of emotions because it makes me realize just how much my life has changed.

Yes sometimes my mind is occupied so I forget about what tomorrow will bring but the same thoughts might scare the living crap out of me tomorrow because I’ve actually had time to be in my head for a while and face whatever tomorrow may bring.

Yes all of this does exhaust me, confuse me, depress me, frighten me, and no I really don’t understand things any better than you do. Yes you do hurt my feelings when you scoff at me thinking I can do something in the future that I wasn’t able to do yesterday, and can’t even get out of bed today.

Sometimes you just don’t realize that sitting and resting like a “normal” is actually really hard work and takes spoons just as much as walking or trying to do something. Yes, I will need to lay down and rest just as much from sitting and doing “nothing” than I would walking and trying to do “something” , and sometimes it will actually take sleep to recover and I will be absolutely wiped out the next day from doing a lot of it. Sitting and watching a movie feels like I’ve just run a 5k.

And yes spoons aren’t automatically replenished in the morning. You have to earn them back by resting. Some days you only earn back 3 spoons. And finally no, I didn’t ask to be this way, no I don’t like it, yes if I had to choose I wouldn’t do this over again, and yes, I will try to make the absolute best of things that I can.

-Dawn Marie G-