Monthly Archives: June 2014

Rehabilitation & Recovery for Arachnoiditis Survivors

Multiple Works-Stations in the studio
Multiple Work-Stations in the studio help to prevent arachnoiditis pain flares.
View through the opening of the Ostrich Cot
View through the opening of the Ostrich Cot

OLYMPUS DIGITAL CAMERA cotPhoto OLYMPUS DIGITAL CAMERA

Standing to paint
Standing to paint

“Many adjustments must me made in order to continue living a healthy, productive life after Arachnoiditis. Willingness to adapt is crucial to survival. Eventually, I learned that rehabilitation is somewhat synonymous with the concepts behind the term, downsizing. ” ~slk

Draft of Book Cover

Draft of Book Cover

Working in creative non-fiction, Still Standing, Sometimes is a story about Sheila’s journey into the world of spinal adhesive arachnoiditis & her contact and participation in the Arachnoiditis Survivor community. This pending publication depicts the unexpected meeting of dedicated and determined daily heroes.

Preview  Sheila’s experience and perspective about:

PREVENTION,  SUPPORT: FAMILY & FRIENDS CAN…, EMPOWERMENT THROUGH BEHAVIOR MODIFICATION, VOCATIONAL REHABILITATION, COPING WITH THIS ADVERSE OUTCOME, MISSING PIECES 

Physical Rehabilitation & Recovery After Spinal Adhesive Arachnoiditis:How to help an Arachnoiditis Survivor excerpt from Art For Arachnoiditis:Still Standing; Sometimes                                              ~ ©Sheila L. Kalkbrenner

Survivors who would like to contribute written or photographic portions of their own Arachnoiditis experience to this publication can comment below or contact Sheila at SheilaLynnK Art studio by email:

sheilalynnk@yahoo.com  subject line: “Add my story”

Please be sure to list names of authors and/or photographers for listing in the final publication.

 

Lily
Remembering Lily in the morning ~slk
Sophie
Remembering Sophie helping out in the studio ~slk
Moving Day
Moving Day/Downsizing=big changes ~slk

 

 

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Funding Secure!

Arachnoiditis Survivor ~HATCHFUND CAMPAIGN SUCCESSFUL!!!

My Path © Sheila L. Kalkbrenner

HATCHFUND CAMPAIGN SUCCESSFUL!!!

AWARDED 30 ADDITIONAL DAYS   TO ACCEPT TAX-DEDUCTIBLE CONTRIBUTIONS

Thanks so much for sharing my project, message, and purpose with the public. 

We have exceeded our minimum goal of $2500! 

Raised so far: $2750                    Donors: 26                Project Page Views: 3295
(last updated 6.17.14slk)

“Arachnoiditis Survivor: A Portrait of Resilience against Patient Harm in America is moving forward! 

Over the next few weeks, I will be scheduling interviews and photo sessions with Survivor Volunteers. I am truly looking forward to meeting some of the other survivors, sharing the healing power of art, discussing experiences and ideas about adaptability & reasonable accommodations, and creating an empowered, connected healing community as we increase arachnoiditis awareness and work together to prevent future adverse outcomes. I am excited to explore the creative challenges of building authentic, meaningful, conceptual portraits for this diverse culture of survivors.” ~slk

As a reward for reaching our minimum goal, AIM|Hatchfund has granted an EXTRA 30 days to accept any additional donations. These funds will be distributed on a weekly basis to this Art For Arachnoiditis project.  Please let anyone who intended to donate know they still have time to make a tax-deductible contribution.  

You might remember from the project launch (plan A) that the average cost to travel to each Survivor Volunteer (excluding food) is $565.45. Every additional contribution helps expand the reach of the project & the awareness message by providing supplemental funding for:

Empowering face-to-face interviews with survivors, creating the documentary photo series with fellow Survivors, publicity & expansion of the public art exhibition of the project images 

 All donations from this point on are guaranteed to be applied to the Arachnoiditis Survivor project.

Any questions about the AIM|Hatchfund organization can be directed to:

 Erin Cooper Program Officer, AIM Hatchfund ecooper@hatchfund.org ph: 877-893-0587

THANK YOU TO ALL WHO PROVIDED ENCOURAGEMENT AND SUPPORT DURING THIS PHASE OF THE PROJECT! 

You can join us here for the rest of this journey  and by clicking “Follow” on the Arachnoiditis Survivor Hatchfund link.

Arachnoiditis Survivors are asked to complete this anonymous survey and return it to the studio by August 15, 2014

Now accepting input from Survivors who are ready to tell their arachnoiditis story.

Although it is a shame that there are so many people in need of this resource, it is exciting and validating to know that many Arachnoiditis Survivors have faith in the empowering benefits of this art project. We are determined to show the faces affected by this hidden adverse outcome.” ~slk 

SheilaLynnK Art Studio, Art For Arachnoiditis, 345 South Main Street , Wellsville, NY 14895

www.sheilalynnkart.com  fax/ph:585-593-4161

Studio visits available by appointment.

Many Thanks to our Sponsors

Art for Arachnoiditis Survivors: Project Sponsors

 
 
Anonymous Donation Received the old-fashioned way!
THANK YOU!

Thank you!
Your support of this Art and Empowerment Project to Benefit Spinal Adhesive Arachnoiditis Survivors is greatly appreciated.
This project cannot happen without your help.

Sponsors 
Listed in the order in which 
donations/contributions were received or ad space was purchased. 

Tier 1 ~  tax deductible contributions
In addition to generous donors
who have chosen to remain anonymous, contributions have been received from:
Ostrich Products
Ryan Dibble
Sherry Barber
Nikki Lussier
Belinda Knight
Tom Barber
Louise Carboneau Vermeiren
Black-Eyed Susan Acoustic Cafe
Pat Vanden Avond

Tier 2~ $300
An anonymous donor 

Tier 3 ~$500
Karen Kovacik Early in memory of Claudine Goze-Weber 


Tier 4 $1000
An anonymous donor

Benefactors $5,000 and up


Hatchfund Open Match Fund
$100 May 20, 2014


In-Kind Contributions (hours donated)
SheilaLynnK Art Studio  123 hours

Additional Support
Kathleen Decker
Brian Decker
Jane Foster
Karen Dickerson
Terri Anderson
D & S Barber

SheilaLynnK Art Studio is a for-profit business faithfully invested in the healing power of art and dedicated to Community Action

The project budget is available for public review. 

Traveling With Arachnoiditis

Traveling With Arachnoiditis

Road Trip

A road trip for the average person often includes a view like this one.  Although the survey results won’t be in until after August 15, 2014, I am fairly confident when I say that the majority of Arachnoiditis Survivors limit travel time to medical appointments and absolute necessity journeys.  Because arachnoiditis scars the nerves in the lumbar spine restricting movement, limiting positioning options , and making sitting or bending at the waist excessively painful; most survivors are unable to drive for long periods of time.  Add to that the difficulties created by the vibration of the road, the bumps and sudden shifts and the Survivor ends up in too much pain to enjoy any outing anyway.

Travel connects us to the real world community, if you are a Survivor who has found a way to accommodate arachnoiditis to permit you to travel, please share your photos of what you do to enjoy this option.

Send them to sheilalynnk@yahoo.com. Subject line: TravelingWithArachPhoto.

Show us what keeps you comfortable, share available links to products or services which help you, what journeys are worth the effort, and tell us a little bit about how you benefit from your destination. Your photos  & photo credit will be added to the Art For Arachnoiditis Photo Gallery.

I look forward to seeing your photos!

About Square Time

Time stands still as it passes us by
parallel lives
wondering why
wait and watch
get to know
rehabilitation moves so slow
sweating, shaking, holding time
in trembling hands
pages align
unglued
the muse
falters and flashes
adhesion brings ashes
stifles the spark
breathe
glow
struggle to know
adjusting the pace
wasn’t a waste
resigned, refined
a new design
today, tomorrow
tainted with sorrow
blessed by hope
alive!
~slk–

As I assembled the work for A Round Now In A Square Time I was forced to revisit the phases and stages of my own physical rehabilitation. The internet has the power to be an incredible rehabilation tool for conditions which leave the patient isolated from society. Parallel lives meet in the support groups there. They share resources and frustrations. They grieve in empathy for the time that was and the now that is. Together they inspire enough hope for tomorrow because there is strength in numbers. The internet links us to the outside world while we virtually live within the confines of adhesive arachnoiditis. Until we adapt and find a way to live independently in real time we are forced to survive vicariously and at the mercy of the people around us.
Active members of Life With Arachnoiditsand Arachnoiditis Society For Awareness and Prevention kept me in touch with virtual humanity while I was re-defining my physical presence in the world.Image

Mandalas ~ A Good Place to Start Healing with Art

(c) sheila l. kalkbrenenr
“When I began exploring the healing power of  drawing Mandalas, I was actually quite surprised at how consuming and distracting they could be. I kept them at a manageable size (6″ x 6″ so that they could be worked on while I was using my ostrich cot.” ~slk

“Today, mandalas are entering into medicine as a healing tool. Researchers and many physicians suggest that meditation can help to boost the immune system, reduce stress, combat depression, lower blood pressure and help to promote restful sleep.” ~ From the Xinalani Retreat Blog: http://www.yogaretreatsinmexico.com/2010/12/color-your-way-to-calm.html

You can draw your own mandala(s) or color in designs created by other people for this purpose. They can be as complicated or as simple as you need them to be.

by Maureen Frank The Mandala Lady
by Maureen Frank
The Mandala Lady June 2014  http://mandalaofthemonth.com/2014/06/

You might also like: Introduction to the Healing Powers of Mandala Coloring Pages

Logo~Arachnoiditis Society for Awareness and Prevention

Logo~Arachnoiditis Society for Awareness and Prevention

Logo designed for ASAP by Survivor & artist, Nicola Reeves

Additional information and support for Arachnoiditis Survivors can also be found at:

Arachnoiditis Canada.com http://www.arachnoiditiscanada.com/

Arachnoiditis USA  http://www.arachnoiditisusa.com/

Arachnoiditis.CO.UK http://www.arachnoiditis.co.uk/index.php/component/content/article/11-about-arachnoiditis/6-symptoms

Arachnoiditis Foundation, Inc. http://www.arachnoiditis.com/

The Burton Report on Adhesive Arachnoiditis  http://www.burtonreport.com/infspine/adhesarachhomepage.htm

Circle of Friends with Arachnoidits (COFWA)http://www.cofwa.org/COFWA.htm

The End Depo-Medrol Now Campaign (EDNC) on Youtube: https://www.youtube.com/user/EndDepoNowCampaign and Google+ : https://plus.google.com/111646574436469623728/about

Support Groups and chats can be found via Life With Arachnoiditis on Facebook: https://www.facebook.com/pages/Life-With-Arachnoiditis/97169665773?ref=ts    and  Private groups on this list:  https://www.facebook.com/search/str/arachnoiditis/pages-named

 

Arachnoiditis Survivor: A Portrait of Resilience Against Patient Harm In America

Arachnoiditis Survivor: A Portrait of Resilience Against Patient Harm In America

Art For Arachnoiditis Portrait Project currently in progress at SheilaLynnK Art Studio.

Accepting tax-deductible contribution via AIM|Hatchfund until July 6, 2014. All contributions are guaranteed to be applied to this project.

Survivors Please print and complete the Arachnoiditis Survivor ANONYMOUS Survey and mail it back to the studio. Deadline August 15, 2014

and/or

Tell Us Your Story  and become a project participant.

Send your photos about your arachnoiditis experience to sheilalynnk@yahoo.com with Subject Line: Arachnoiditis Survivor Photos. (Please be sure to identify the name of the photographer if you would like the photo credit to be listed in project publications and exhibitions.)

or

SheilaLynnK Art Studio, 345 South Main Street, Wellsville, NY