Tag Archives: arachnoiditis survivor

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YEAR 2 Launch
YEAR 2 is IN PROGRESS NOW ~ Watch Launch Video

REMEMBER THE ART FOR ARACHNOIDITIS PROJECT ON GIVING TUESDAY

This is the second cycle of the Art For Arachnoiditis Project, a charitable project of SheilaLynnK Art Studio Fiscally Sponsored by the New York Foundation for the Arts, began as an individual recovery project, became a one-on-one Conceptual Portrait Project for Survivors, and expanded to become a message of connection, empowerment, healing, Awareness and Prevention.

Words cannot express the gratitude we feel for the support and encouragement we received during YEAR 1. Thank you!  Moving into 2016, the project continues to grow.

FUND YEAR 2 ~ It’s tax deductible AT
NYFA [The New York Foundation For the Arts].Or by check payable to the New York Foundation for the Arts, Memo: The Art For Arachnoiditis Project mailed to: SheilaLynnK Art Studio, 345 South Main Street, Wellsville, NY 14895.

Contributions of $2500 or more must be accompanied by a Contribution Letter

MATCH FUNDING: In observation of Giving Tuesday, Double the Donation is giving their service away for FREE from November 17th, 2015 – December 15th, 2015. All nonprofits’ donors can access their database of companies which match employee donations for FREE. Use the search tool to see if your company will match your donation and/or to access the forms, guidelines, and instructions you need to submit your matching gift.

SEE WHERE THE MONEY GOES: The Art For Arachnoiditis Project BUDGET

MORE ABOUT SPINAL ARACHNOIDITIS

In addition to the Activities for Healing with Art provided at artforarachnoiditis.org and Thanks to SheilaLynnK Art Studio  patronsArachnoiditis Survivors and the public received FREE art and creative ideas for healing every day during the Art Every Day Month Challenge [November 2015] hosted by Leah Piken Kolidas at createveryday.com.

LOOKING FORWARD TO THE YEAR 2 ENTRIES

Survivors who submit entries will be entered for a chance to win an Arachnoiditis Survivor Portrait similar to the ones displayed at the exhibit. Two winners will be announced at the close of the Call For Entries in February 2016.

Year 2 Entry Forms will be accepted August 30, 2015- February 15, 2016. We have added MUSIC to the list of Categories.

Search 4 ArachnoiditisSurvivors Song
Survivors’ Song Search

Winner will be determined by Popular Vote from the Survivor Community at the Art For Arachnoiditis Project. To enter the competition: Follow the instructions on the registration form and write, “Survivors’ Song” for your media category (Limit: One Entry for this category). The winning song will be licensed for project use and the winner will receive $35 and assistance in submitting the copyright application to have the song copyright protected in his/her own name.Survivors will be invited to vote for their favorite from Feb 16-March 16, 2016.

Survivors can still sign up for the Album of the Survivor HERE & Map of the Survivors HERE .The Map of the Spinal Arachnoiditis Survivors Registered at The Art For Arachnoiditis Project is Live At Google Maps HERE.

Map of Arachnoiditis Survivors
Map of Arachnoiditis Survivors Registered at the Art For Arachnoditis Project

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Spinal Arachnoiditis Awareness Art
WHY YOU CAN HELP Empower Survivors and Increase Awareness DONATE NOW It’s tax deductible at NYFA

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MAP OF THE SURVIVORS

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GET INCLUDED in The Art For Arachnoiditis Project MAP OF THE SURVIVORS! TELL US WHERE YOU ARE FROM in the comments here or on Sheila Kalkbrenner’s Map of the Survivors Patreon Post and we will add your location to the map. NOT from the USA? No worries, The map now includes our world of survivors. As of February 16, 2017 we have 266 Arachnoiditis Survivor locations registered for the Map. These locations range from Canada and the USA to Scotland, England, France, South Africa, Australia, Mongolia, India, and New Zealand.

See current locations registered at the Art For Arachnoiditis Project. OLYMPUS DIGITAL CAMERA 55f21-mappins3-13-15 In addition to showing the posters of the Album of Survivors Collage at the Exhibit, a hand-painted MAP OF THE SURVIVORS was pinned with Awareness Ribbons created by Survivor, Linda Funsch, and displayed at the First and Second Survivors’ Art Exhibits. Watch the Map In Progress Video YEAR 2 of the Art For Arachnoiditis Project includes many new opportunities to Empower Survivors via Participation in the Arts. I will be taking new entries for YEAR 3 from November 1, 2016 – April 9, 2017.

Stuck on Survive

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.

Sep 20, 2014

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.

Sep 20, 2014 Sep 20, 2014

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 .OLYMPUS DIGITAL CAMERA 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 methodstools,  or equipment that will permit him to play again when he is ready.

~Sheila L. Kalkbrenner