Tag Archives: Arachnoiditis

Art Every Day Month~Day 16 ~ Adaptability

bench4cot11.16.15D
Studio space was getting crowded. Repurposed the old twin bed frame into this All New Bench for my Ostrich Cot!

For those who haven’t seen it before, it used to be on the floor, then on a twin bed frame if I wasn’t using it outside. The twin bed frame had some broken places so can’t ever be used for a bed again. This week I decided to chop it up and save some floor space. Now the cot is actually at the perfect height for me to get up and down with ease. I also bolted it to the top of the bench so it can’t tip if I lose my balance on the way. Woohoo!

This project brought to you by ~ Mid-November and temps in the 60s!

 

Related Links:

Rehabilitation and Recovery 

History of the Ostrich Cot at SheilaLynnK Art Studio 

The Rest of the Art Every Day Month Series of Posts are  Here 

NOTES FROM AEDM 2015 DAY 1

I have decided to participate in Leah Piken Kolidas’ Art Every Day Month Challenge atCreative Every Day during the Month of November. For the first time, as I do this 30 day challenge, I will be posting my progress HERE for arachnoiditis survivors and advocates.

I hope you will join me for this creative journey. If you are an Arachnoiditis Survivor creating any art during the series that you would like to share with The Art For Arachnoiditis Project feel free to do so in the Art For Arachnoiditis Project Facebook page, share links in the comments below, or submit the work for use in YEAR 2 of the Survivors’ Art Exhibit. (Accepting Entries until Feb 15, 2016.) Although the Art By Survivors’ exhibit is open only to the Survivors; other creative minded individuals are invited to share in all of the other places.

SUBSCRIBE to get the quarterly Art For Arachnoiditis Project Newsletter

WATCH VIDEO FROM OUR 2015 SURVIVORS’ ART EXHIBIT HERE

SHOP Awareness Art,Your purchase will benefit the Art For Arachnoiditis Projects at the studio. These fair market prices are not tax-deductible purchases.or Make a tax-deductible contribution via our Fiscal Sponsor,  NYFA [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.

To submit original art to this catalog to benefit the Art For Arachnoiditis Project Awareness Efforts. Send submissions with your signed Art In-Kind Form to sheilalynnk@yahoo.com subject line: Add My Art

This is the first time I will be doing daily art for The Art For Arachnoiditis Project. If you have never seen these posts before; you can get a better idea of what this is all about by checking out a A Few of my Similar Month-long Projects/Posts/Series from the Past.

My 30.30.30 [30 Days, 30 Pieces/posts, 30 minutes each] activities have previously been posted on my blog and on my facebook page. The most recent one I did in September 2015 is available HERE, April 2015 started HERE: 
 
April 2014 I alternated between painting and drawing HERE andHERE
January 2014 ~ 30 Day Art Journal Project HERE
September 2013 was a daily Mandala Project (which grew and ended up in my 2013 Show, “A Round Now In A Square Time” with artist & friend, Allison Midgley) That project startsHERE
The Show is HERE
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Arachnoiditis Angels

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The First Art For Arachnoiditis Project Exhibit is dedicated in loving memory to Claudine and our other Arachnoiditis Angels.

Eight years ago my first Spinal Arachnoiditis Symptoms began. It was later discovered that I had been misdiagnosed and had been living with chemical meningitis without any treatment. Eventually this became Arachnoiditis in the thoracic and lumbar spine. Although I gradually developed 39 of the 52 symptoms of the Adhesive Arachnoiditis Syndrome described by Dr. Sara Andrea Jones, it took three years for me to get a confirmed diagnosis.

Like many Arachnoiditis Survivors, my life was falling apart, I was in constant pain and NO ONE could/would tell me why.

Claudine was one of several Life With Arachnoiditis support group members/survivors/advocates for prevention who helped me to keep what was left of my sanity during this devastating experience. I will be forever thankful for her compassionate, kind, gentle and encouraging words.

If you would like an image of your Arachnoiditis Angel added to our Album of Angels, please send your memorial photo and dedication to: SheilaLynnK Art Studio 345 South Main Street Wellsville, NY or email to: sheilalynnk@yahoo.com            subject: A4A add my Angel   OR by posting in the Album of Arachnoiditis Angels or  give descriptions/links to your Angel’s story in the comments below. (By providing your Angel’s name, photo, dedication, story, or other notes here, you give your electronic consent for use of this material in ALL Art For Arachnoiditis Project Publications. No additional photos or information of or about your Angel will be published without your written consent.)

Eight Lessons Learned and Remembered

This just in! The ice is falling off of my Frozen Muse!

Those are NOT tears today. Look closely. Teeny-tiny trickles of creative energy are beginning to FLOW beneath the surface of her frozen facade.

Un-Frozen
Un-Frozen

Winter wonder, in all its fluffy, frigid, crisp clarity lands me in some difficult paths of self-assessment and sometimes leaves me wandering aimlessly away from my intentions in an effort to relieve physical discomfort. The discrepancy between my scheduled goals and actual achievements can be quite disheartening at times.  This is when it is crucial for me to visit activities and inspiration which remind me to:

Day 12 image from Lisa Sonora's FLOW 30 Day Journal Project #30DayJournal
Day 12 image from Lisa Sonora’s FLOW 30 Day Journal Project #30DayJournal

It is a struggle for me to accept what I CANNOT do. Sometimes so much so that I forget to see and celebrate the things that I CAN do and am doing, RIGHT NOW.  This mind set can become a slippery slope for an Arachnoiditis Survivor. I have added the above quote to my Wander Land Cards so that I don’t forget to accept where I am right now instead of beating myself up over that which I have not yet achieved.

However, our Project Deadlines are looming large in my mind. The CALL FOR ENTRIES to Survivors to Register for the First Public Art For Arachnoiditis Project Exhibit  ends February 15, 2015. Thanks so much to all who have submitted entries, supported the project, and participated in the Arachnoiditis Survivor Portrait Project. Please keep doing what you are doing! Let people know that we still need MORE entries to make this a show worth visiting.

The last few weeks have been a harsh reminder of lessons learned that I forgot to remember.

1. Don’t over do it!  Listen to your body. Stop BEFORE it tells you that you must.

2. Plan wisely. Time management is key.

3. Be Realistic! Winter is the WORST time for me. Over-extending during the holidays is a mistake. It is best for me to set aside career/studio projects and goals until the third week in the New Year. For my own personal best results it might be good to make January a month of hibernation. So that I can remain Sustainably Creative. 

Relocating to a more suitable climate might be realistic and more than beneficial for some Arachnoiditis Survivors.

Although I often fantasize about warmer climates, the benefits of living two blocks away from my only Grandchild far outweigh these balmy whispers and the wintry obstacles. The superglued fragments and the few unbroken places remaining in my heart would be shattered by the loss of this wonderfully uplifting, simultaneously challenging, Grandma experience. Appropriate planning allows me to accommodate and accept winter so that I can keep what matters most.

4. My Living With Arachnoiditis Daily Plan (especially in winter) should include space for unexpected visits, emergencies, AND recovery time. If none develop, this is just free time to do more art.  

Cabin Fever Can Be Spiritually Crippling. In the grip of an Upstate New York January, visitors are welcome but require vertical time. I forgot to leave time for this in my day. 

The unexpected New Year’s Eve death (read, “winter burial”) of Smoke, our 14 year old cat, was not only sad but, was, potentially, a horrendous physical set back. Thankfully, the weather was oddly warm up until that day and the ground was sort of easy to manipulate. Life is full of surprises. Plan for that. Malachi’s special daily doggy needs combined with his unexpected medical maintenance this winter  equals mass miscalculations and manipulative juggling of the once-manageable time table leading to virtual mayhem… in my mind. Did I also forget to mention that PERCEPTION is 9/10ths of the law of survival?

5. Self-employed/stay-at-home/ housebound people, NEED tools, time, and space to relax, too.  If you have ever worked from home, you know the challenges of leaving your work AT work. Designating a physical space for work and relaxation respectively can be very liberating. As a youth advocate, I learned that I served my clients best by leaving THEIR needs behind for a little while. As an Artist and Studio Owner, as well as,  Survivor and Advocate for the Prevention of Spinal Adhesive Arachnoiditis; I have found this to be equally true.

Orchestrating this becomes an exercise in actual and virtual compartmentalization. Although very physically demanding, in the long run; FINALLY organizing my live/work studio space so that there is tangible/physical space…with room to be horizontal or vertical as needed… set aside for:

family & visitors, my work, and ME (apart from my WORK)

was a major physically demanding but life-altering step that I SHOULD have taken when the weather was warmer but, for the sake of my sanity and creative productivity; could NOT wait until it warmed up again.

Horizontal Work Station that is NOT my bed.
Horizontal Work Station that is NOT my bed.

During the first few years of crippling pain, and even as recently as December 2014; the need to be horizontal so often sometimes leads me into the bad habit of having my entire life occur in my bedroom. It is/was never unusual to see books, papers, laptop, journaling projects, and art supplies stacked and piled around me on my bed and all over any flat surface near it. I think, even prior to arachnoiditis, my workaholic personality sometimes lead to this.

For me, this is NOT a good thing. It all becomes jumbled together. Eventually, I lose the ability to focus. Since CSF issues make focus a challenge at times anyway, built-in focus zones are incredibly beneficial for me. Structure is GOOD. When I keep designated tasks and objectives in designated areas, it allows me to always have a healing place for  RETREAT.

With the launch of the Art For Arachnoiditis Project in March, by the end of 2014; my existing workstations had just started to become too heavily merged with my down-time locations in my small house. At the end of December I was so overwhelmed by the inability to get away from the endless to-do lists that no art was being made. Frustrating  for me to admit, even with the legit technical difficulties at the time; The Survivor Portrait for Melanie Lamb came to a screeching halt. 

6. SIMPLIFY! and know thyself.

As long as I am the only one doing the work, (generally my selected mode of operation) my house/yard/life will NEVER be as clean/organized/tidy as I WANT it to be. Just when I think I cannot minimize or downsize anymore, I realize there is still room for some elimination of unnecessary material distractions. I also know that, for me,  the more organized the existing items are, the less distracting they become.

This even applies to lawn maintenance. Over the summer, I realized that if I grow edible weeds in my yard, there is less lawn to mow and it changed how I see that  unmanicured “mess” that it becomes when I am unable to maintain it. No longer an eyesore, it becomes a renewable resource. Not sure my neighbors agree but, it is what it is. 

7. LET GO! Remember that it is NOT your job to store, manage, or organize the possessions, obligations, or responsibilities of others.Let them clean up their own mess so that you can clean up yours. It’s good for all of us. 

8. FORGIVE YOURSELF when you are unable or forget to do these things.

From Christina Lane
From Christina Lane

Have you learned anything that helps you manage living with arachnoiditis? Please tell us about it here. 

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.

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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