This last day of “NERVEmber ® and Art Every Day Month (AEDM) is about adaptability, solutions, and coping targeted at post-survival Thriving with arachnoiditis and its numerous consequential conditions.
The Arachnoiditis Apocalypse is accompanied by MANY lessons that are as diverse as the people living with it. My life was permanently altered in many ways. It took time to grieve what was gone and to realize, “altered” is not the same as destroyed.
Much of the content I post is designed to offer search terms you may not have considered and to let you know what has or has NOT worked for me. What I share is based on my own experience and is NOT ever intended as medical advice or treatment for you. Always be sure to consult your trusted practitioners prior to making any changes to your treatment plan.
The Bullet Points ~(This is NOT a to do list.)
Own your Wellness.
Go Gently and Listen to Your Body.
Celebrate Little Things. Grace lives in them.
Know your triggers. Navigate your pain.
(For Adhesive Arachnoiditis) Assess the impact of any obstruction to natural cerebrospinal flow. Find out which positions mitigate the blockage to restore as much optimum flow as safely as possible. (Whether it is a leak or a blockage, frequent spinal or positional headaches may be an indicator of a disruption of the natural flow of spinal fluid.)
Pace yourself, but KEEP moving.
Get Creative – The Creative Process Heals
Be Mindful. Intentional use of time minimizes the perception of lost time.
Be Informed. Not obsessed.
“Escape” in moderation.
Connect with Others. Solitude is Beneficial. Isolation is Lonely. Loneliness is destructive. Healthy connections create harmony in mind, body, and spirit.
Work with a trusted practitioner to document your progress and learn which treatment and support are right for you.
DETAILS
Adaptability is the foundation for Thriving with Arachnoiditis.
The significance of Cerebrospinal Fluid Flow Rotation was the key that unlocked the mystery of how I could re-learn to live my life. In my case, this obstruction at multiple spinal levels IS, and will always be, the origin of much of my neurological dysfunction. It became such a big part of pain navigation that a pervasive awareness of it underlies everything I am doing now. Sometimes, quietly tracking my remaining minutes, I am conscious of it running out like the sand in the hour glass shown in the art journal doodle above.
Though at first I didn’t know how to differentiate these factors from the others, I did learn. For me, maximum vertical time was approximately two and a half hours before symptoms of CSF entrapment/blockage would begin to impair my ability to function. However, IF I made sure to get horizontal every two hours, even when I was feeling okay-enough in the moment, eventually I had the power to minimize the impact of those symptoms. As is common for arachnoiditis survivors, invasive procedures are contra-indicated in my care. This obstructive scar tissue cannot be removed. (These symptoms have some similarities to those of a CSF leak. The difference is there is NOT a leak. The fluid is still in there trapped in the wrong place in the spinal canal. It puts pressure in those places while the brain is essentially deprived of an adequate amount.)
Eight years into Arachnoiditis Survival, I developed Complex Regional Pain Syndrome (CRPS). Though I wouldn’t wish it on anyone, my biggest lesson came in learning more about how to manage it. As I changed my habits to reduce inflammation, I inadvertently discovered that, over time, I was reducing the swelling in my spinal cord. Eventually, there was more room for the spinal fluid to flow around the scar tissue. In 2019, twelve years after leaving the workforce due to unemployability, I was able to return to working in the local community. From 2019 to 2023, I continued practicing all that I had learned to navigate and adapt to this injury.
A year ago today, I fell down some icy stairs and broke a bone in my back. Ordinarily this should have taken about twelve weeks to heal. It didn’t. Complicated by what was most-likely a bone marrow infection and the discovery of an undetected compression fracture at a different spinal level resulting in a new impact-trauma-induced arachnoiditis flare, 2024 has been a very long year.
So, this NERVEmber, now that I finally have all the details about what I am dealing with this time, I am revisiting all of the lessons I learned along the way to this moment.
“NERVEmber ® brings awareness to conditions that have nerve pain as a symptom. The International Pain Foundation hosts the OFFICIAL NERVEmber project events each year. Since its inception, tens of thousands of nerve pain patients and organizations have signed on to help promote NERVEmber.“
Just a few minutes ago, it dawned on me that putting these here may be more useful than posting them where I had been putting them. So, here are some social media posts I’ve shared these last few weeks about the Nerve Pain Conditions which have had an impact on my life. There is a lot of info in this post. Pace yourself.
A known consequential condition of spinal adhesive arachnoiditis, “Complex Regional Pain Syndrome (CRPS) can affect the bone marrow, leading to bone thinning or excess bone growth. In rare cases, the bones may become rough or enlarged. CRPS is a painful disease that occurs when the sympathetic nervous system goes awry. It can cause a variety of symptoms, including: Pain Swelling Redness Temperature changes Hypersensitivity, especially to cold and touch Muscle spasms and tightening CRPS can also cause the affected limb to become cold and pale. Over time, the condition can become irreversible. In some cases it can spread to other areas of the body. CRPS is sometimes associated with bone marrow edema syndrome (BMES). Complex regional pain syndrome (CRPS) has been known by many other names, including: Reflex sympathetic dystrophy syndrome (RSDS) Algodystrophy Causalgia Transient osteoporosis Post-traumatic dystrophy Reflex neurovascular dystrophy The International Association for the Study of Pain (IASP) introduced the term CRPS in 1994 to describe a variety of post-traumatic neuropathic pain conditions in the limbs. However, the name change from RSDS to CRPS has not been universally accepted.
“Listen-whatever it is that makes you wake up, whatever it is that makes you feel a moment of peace or a glimmer of hope, just keep it close. Please, live for it. Make sure that you focus on it. Make sure that you make time for it. I don’t care what it is. You have to understand that happiness does not have to be this big all-consuming thing. Sometimes happiness is your morning cup of coffee. Sometimes it is the smell in the street after it rains, or your favorite song played on repeat for three hours straight. Sometimes happiness is your friend’s laughter or the way the sky looks through the trees in your favorite park. If it keeps you going, if it ignited something within you, it doesn’t matter how small or grand it is. Just hold on to it. Let it save you.” ~Bianca Sparacino
Art is that for me.
Nervember Post – Gratitude 11.28.2024
Back to the drawing board. Though 2023 was a fantastic year of wellness and possibilities, 2024, blessed with moments of Grace between challenging days has been long and pushes me to tap into lessons learned and to seek new wisdom to heal more stuff… … Again. Future Art Offerings will be coming to patrons from the Ostrich Cot. …………………………………………………………………………… Throwback-but-Thankful Thursday: To understand my Gratitude around the discovery and support I received from the #OstrichCot you can Click Through to see portrait examples from Ten Years Ago here: https://www.youtube.com/watch?v=VQYG6s6LBR0 P.S. These are portraits in progress from the Arachnoiditis Survivor Portrait Project. New Portrait Order Options Are Not Available at this time.
Nervember Post 11.26.2024 Spinal Arachnoiditis and CSF Flow Blockage
A preventable permanent spinal cord injury, “Chronic adhesive spinal arachnoiditis (SA) is a complex disease process that results in spinal cord tethering, CSF flow blockage, intradural adhesions, spinal cord edema, and sometimes syringomyelia. Mechanism: When the CSF cannot circulate freely, it can build up pressure within the spinal cord, causing fluid-filled cavities to form. Symptoms: Symptoms can vary depending on the location and size of the obstruction but may include pain, weakness, numbness, muscle atrophy, spinal headaches, and impaired coordination in the affected areas of the body.” Prevention is the only cure. https://www.medicinenet.com/is_there_a_cure_for_adhesive_arachnoiditis/article.htm Image| Axial View of Thoracic Spine MRI post off-label use of spinal anesthesia containing 5% lidocaine with epinephrine. See also: “Potential Neurotoxicity of Spinal Anesthesia with Lidocaine” Michael E. Johnson MD, PhD https://www.mayoclinicproceedings.org/article/S0025-6196(11)64644-2/fulltext
NERVEmber Post 11.22.2024 MEDICAL TRAUMA (Image credits to sources as noted)
“We don’t talk about medical trauma all that often. But for many, trauma at the hands of healthcare professionals is real — and knowing how to heal matters.“ https://psychcentral.com/ptsd/medical-trauma #MedicalHarmSurvivors #TraumaInformedCare #DoNoHarm ” Around 1 in every 10 patients is harmed in health care and more than 3 million deaths occur annually due to unsafe care.” https://www.who.int/news-room/fact-sheets/detail/patient-safety
“Medical trauma is a form of psychological trauma resulting from medical diagnosis or intervention. The resulting symptoms can include post traumatic stress disorder (PTSD), depression, anxiety, and disrupted sleep. Through acknowledgement and acceptance — and with the proper treatment from a mental healthcare professional — most people can manage their symptoms and experience full recovery from this kind of trauma.“ https://www.choosingtherapy.com/medical-trauma/ Medical Trauma: How to Cope When Treatment Hurt You https://hartzellcounseling.com/medical-trauma-how-to-cope-when-treatment-hurt-you/
Medical visits can significantly trigger trauma for survivors of patient harm, as the healthcare environment can re-traumatize them by reminding them of previous negative experiences, particularly when elements like invasive procedures, loss of control, or power imbalances are present, causing anxiety, fear, and flashbacks.
Trauma-informed care: Healthcare providers should be trained in trauma-informed care practices, which involve understanding how trauma can impact patients and taking steps to create a safe and supportive environment. Open communication: Allowing patients to share their experiences with past medical trauma and openly discussing concerns before any procedures. Patient autonomy: Providing patients with choices and control over their care whenever possible. Respectful approach: Using empathetic language, validating patients’ feelings, and avoiding unnecessary touch or pressure. Collaboration with mental health professionals: If needed, involving mental health professionals to support patients through difficult medical encounters.
Chronic Pain and PTSD Sadie E. Larsen, PhD and Katherine E. Hadlandsmyth, PhD
When people experience both chronic pain and posttraumatic stress disorder (PTSD), each condition can exacerbate the other. This article provides information and options to providers working with people who have both PTSD and chronic pain. https://www.ptsd.va.gov/professional/treat/cooccurring/chronic_pain_guide.asp
“Medical trauma or medical post-traumatic stress disorder is painfully under-represented, yet overwhelmingly common.
What Is Medical PTSD? Simply put, medical PTSD is PTSD. Most, if not all, typical symptoms of PTSD are congruent with those of Medical PTSD. The only difference is in the traumatic event itself.
The Anesthesiologist who caused the spinal cord injury I survived was simply doing what he was taught following the guidelines for the Accepted Average Standard of Care in NYS. In my extensive experience as a patient, most practitioners have good intentions.
NERVEmber Post 11.21.2024 ~ Nerve Pain and The Anatomy of Sitting
“Prolonged sitting, especially on an unsupportive surface, can flatten the natural curves of our spine, placing undue stress on the vertebrae and surrounding tissues. The lumbar curve is especially at risk. When we slouch on a sofa, this curve diminishes, leading to a strain on the discs between the vertebrae. Over time, this can lead to discomfort, fatigue, and long-term health issues.” https://dantefurniture.co.uk/blogs/lifestyle-and-wellbeing/sofas-and-your-spine-the-connection-between-sitting-and-posture
“In this time where most people are currently still working from home, it can be tempting to stay on the sofa with your laptop all day. But, this is far worse and can do a lot more damage to your back and neck than sitting at a desk or a table. […] As most sofas have a deep seat, it can be tricky sitting upright in a comfortable way – especially if you have shorter legs. Add two or three cushions behind you to support your upper back to prevent from slumping. Supporting your upper back rather than your lower will help to keep your pelvis and your spine upright and your head will also be better balanced which will then reduce pressure on the lower back. Experiment with how many cushions you use to find your most comfortable position.” https://swyfthome.com/blogs/lifestyle/sit-on-a-sofa-to-avoid-back-pain Vagopathy “Vagopathy is the result of the “facedown lifestyle” looking at screens and phones all day, traumatic injury, hypermobility syndromes, and degenerative wear and tear. The subsequent neck instabilities these problems cause is “vagopathy” (the destruction of the vagus nerve). The resulting compression and altered signals of the vagus nerve can lead to a condition called sympathetic dominance. This is a situation where a person feels stressed all the time. This is more than phycological stress, this can be a structural stress.” https://caringmedical.com/prolotherapy-news/sleep/
NERVEmber Post 11.20.2024 ~ The Truth About Epidural Steroid Injections
This 2014 video gives a good demo, at the 00:30ish mark, of how spinal injections can have an impact on spinal nerves and discusses the balance between risks and benefits. https://www.youtube.com/watch?v=cPieVQdXP58 Always request that spinal injections be guided live by medical imaging, fluoroscopy, during the procedure. Cancel or Reschedule if this option is not available. When receiving spinal anesthesia, always confirm what anesthetic is being used and that is safe for spinal use. Check the adverse events listings to find out more about it before your procedure. The campaign to push this arachnoiditis awareness effort forward was partially inspired by the deaths and adverse outcomes of people who survived the 2012 nationwide fungal meningitis outbreak caused by epidural steroid injections. Designed to empower arachnoiditis survivors, The Survivor Portrait project was part of this awareness campaign after I was asked to tell my own story. Between 2014 and 2018 this project grew into an international creative wellness resource serving survivors in 93 countries. (WordPressReport 2015) https://sheilalynnkart.com/section/396432_Arachnoiditis_Survivor_A_Portrait_of.html
More About the fungal meningitis outbreak: “In 2012, a multistate outbreak of fungal meningitis occurred after patients received contaminated steroid injections from the New England Compounding Center (NECC) in Framingham, Massachusetts: Timeline: The first case was confirmed in Tennessee on September 18, 2012. By October 23, 2013, there were 751 patients and 64 deaths. Causes: The contaminated steroid was methylprednisolone acetate (MPA), which was preservative-free. The NECC used fictional and celebrity names on fake prescriptions to dispense the drugs. Response: The CDC, state and local health departments, and the FDA investigated the outbreak. Clinics and health departments contacted patients who received the contaminated injections and referred them for treatment. Sentences: More than a dozen people linked to the compounding pharmacy were convicted, including: Barry Cadden: Sentenced to nine years in prison in 2017, then resentenced to 14.5 years in 2021. In 2024, he was sentenced to 10 to 15 years in prison on Michigan state charges of manslaughter. Carla Conigliaro: Sentenced to one year of probation and a $4,500 fine. Douglas Conigliaro: Sentenced to two years of probation and a $55,000 fine. Gene Svirskiy: Sentenced to 30 months in prison and one year of supervised release. Christopher Leary: Sentenced to two years of probation and 100 hours of community service.” #ArachnoiditisSurvivor #ArachnoiditisAwareness
NERVEmber ~ A SITTING DISABILITY
EVERY CHAIR. EVERYWHERE. Having a sitting disability brings out interesting social observations. People get very antsy if you don’t sit down when they are seated. It’s rare to find an exception to this behavioral conditioning. During neurological flares, I have yet to find a chair that does not quickly feel like the one shown here. Trust me when I say, I have tried. If you see me sitting and I seem exceptionally distracted it is because there is likely an entirely secondary dialogue happening in my mind to talk myself out of the belief that I am being stabbed incessantly while I sit there. …AND wondering when this “flare” will be over… Hint: A person with a sitting disability caused by an injury to the sympathetic or autonomic nervous system may also be wearing many layers of clothing to buffer the impact and/or manage the intermittent bizarre hot and cold flashes that are part of this package. #CRPSawareness #SpinalArachnoiditisAwareness ………………………………………………….. “A “sitting disability” is the result of a medical condition causing severe pain when an individual is sitting. It is typically a symptom of an underlying condition, such as lower back pain, sciatic nerve pain, piriformis syndrome, or failed back surgery syndrome. It may also be related to fibromyalgia, myofascial pain syndrome, pudendal neuralgia, or coccydynia. The period of time sitting comfortably varies per individual.” “A sitting disability is a medical condition that makes it difficult or impossible to sit, usually due to pain. It can affect people with or without chronic standing issues, including those who use mobility aids. Sitting disabilities can be caused by a number of conditions, including: • Chronic back pain • Pain from the pelvis • Pain from nerves, ligaments, muscles, or fascia • Conditions related to the nervous system • Sciatic nerve pain • Piriformis syndrome • Failed back surgery syndrome • Fibromyalgia • Myofascial pain syndrome • Pudendal neuralgia Sitting disability is an umbrella term that groups people with a variety of medical conditions together based on their common consequences. These consequences can include: Difficulty fitting into the prevailing norms of a sitting society, Difficulty traveling, Difficulty retaining employment, and Feelings of distrust or inauthenticity.” https://www.painscale.com/article/what-is-a-sitting-disability #NERVEmber is Nerve Pain Awareness Month Though individual experiences vary greatly due to the diverse causes of sitting disability, additional support and information about life with a sitting disability can be found at: “I am vertical living with a sitting disability” https://overland.org.au/2021/07/i-am-vertical-living-with-a-sitting-disability/ “What happens when you can’t sit down.” https://myuprightlife.com/index.php/sitting-disabilities/health-conditions/ “Falling through the cracks; recognizing sitting disabilities.” https://www.tandfonline.com/doi/full/10.1080/09687599.2018.1545111 “I have a sitting disability. What that means.” https://www.christinairene.com/wp/archives/1914 Image| Found in the public domain on a traveling blog many years ago when I was writing about traveling as an arachnoiditis survivor doing portraits to empower other survivors. I’ve lost track of who posted it. If you know the source, please let me know so that I can post proper credit. Thanks!
NERVEmber ~ AEDM Post 11.18.2024 ~ “Why Be Happy When You Can Be Normal”
“I have noticed when all the lights are on, people tend to talk about what they are doing – their outer lives. Sitting round in candlelight or firelight, people start to talk about how they are feeling ~ their inner lives. They speak subjectively, they argue less, there are longer pauses. To sit alone without electric light is curiously creative. I have my best ideas at dawn or at nightfall, but not if I switch on the lights, then I start thinking about projects, demands, deadlines, and the shadows and shapes of the house become objects, not suggestions, things that need to be done, not a background to thought.“ ~Jeanette Winterson Author of Oranges Are Not The Only Fruit and Why Be Happy When You Can Be Normal https://www.jeanettewinterson.com/
NERVEmber and AEDM Post 11.15.2024 ~ “You don’t have to be pretty.”
Studio selfie 2022
“You don’t have to be pretty. You don’t owe prettiness to anyone. Not to your boyfriend/spouse/partner, not to your co-workers, especially not to random men on the street. You don’t owe it to your mother, you don’t owe it to your children, you don’t owe it to civilization in general. Prettiness is not a rent you pay for occupying a space marked ‘female.‘” – Erin McKean Flashback Friday – posted for Art Every Day Month 2015– “Human, Naturally” “Survival and recovery impact the individual sense of vanity. Be it the superficial cliche concept of “beauty” or a long-lived appreciation of our “inner beauty”, our self-image seldom escapes the experience unscathed. For all time but, especially, in modern culture; the pressure to conform to the concepts of beauty and grooming of the status quo is directly linked to our ability to be taken seriously by the influential populations of society.
Not only must Survivors overcome the physical limitations imposed upon them but, we must also find a balance within ourselves which allows us to reconcile the alterations in our physical appearance which result from that struggle. […] The reality is, that our appearance can condemn us to a marginal existence. Subconsciously, we fight against that. We think nothing of using the convenient products available to us to allow us to prevent that from happening.“ ~slk Read more about the social conditioning around the relationship between looking healthy and feeling healthy at artforarachnoiditis.org here: https://artforarachnoiditis.org/2015/11/13/art-every-day-month-day-13/ #NERVEmber #OpenlyGrey
NERVEmber and AEDM Post 11.15.2024 “Autumn Ice” and CRPSand Bones
When uncontrolled or “flaring” … Most commonly, CRPS presents with hot, red, swelling and burning pain when the nerves allow too much blood to enter the vessels. However, in some cases, like mine, it can also present as feeling perpetually cold with blueness in the skin, cold flashes and chills with cold pain similar to frost bite because the opposite occurs. The nerves don’t allow enough blood to enter the vessels. (Paraphrasing/over-simplifying this explanation as it was described to me years ago.) For many it includes the body’s inability to regulate temperature. Usually, I hurt before I know the temperature has dropped. Cold sends pain signals instead of thermal warning signs. Because: “The sympathetic nervous system plays a role in the chronic cold phase of complex regional pain syndrome (CRPS): Vasoconstriction During the chronic cold phase, α-adrenoreceptors become more sensitive to circulating catecholamines, which leads to vasoconstriction and decreased blood flow. Sympathetically mediated pain Adrenoreceptors on nociceptive fibers lead to sympatho-afferent coupling, which produces sympathetically mediated pain.
Other aspects of CRPS include: Allodynia: People with CRPS may experience sensations like warmth or cold as painful.
Neurogenic inflammation: The redness and swelling of CRPS may be different from normal swelling after an injury.
Hypoxia: Restricted blood flow reduces oxygen in tissues, which causes pain.
Bone abnormalities: CRPS is often associated with thinning or remodeling of bone, which can irritate nearby nerves.
Movement disorders: Many people with CRPS have impaired muscle strength and movement disorders.“ ………………………………. CRPS (Complex Regional Pain Syndrome) is a known consequential condition of spinal adhesive arachnoiditis. Arachnoiditis is a preventable spinal cord injury caused by the neurotoxins in spinal injections and invasive spinal procedures. Gastroparesis is known to be associated with both. ………………………………………… Art| “Autumn Ice” Tree Project in the Creative Wellness Garden sheilalynnkart.com
“When facing a chronic illness with no cure and no available treatment, the most important steps are to educate yourself about your condition, build a strong support system, prioritize self-care through healthy lifestyle choices, seek professional help from doctors and therapists, and explore potential management strategies to optimize your quality of life; this may involve managing symptoms, participating in clinical trials, and finding ways to adapt to limitations caused by the illness.“ #Nervember #CRPSAwareness #ArachnoiditisAwareness #MGUSPeripheralNeuropathyAwareness
SOCIAL MEDIA USE
NERVEmber Selfie for Social Media Profile Picture
Despite my longstanding struggle with over-use of social media, I believe it is a powerful tool that can be used to create healthy connections. “With great power comes great responsibility.” ~Stan Lee after Voltaire (maybe?) Side note: fact-checking is only as reliable as the sources providing the “facts”… Hence the current long season of doubt. ‘With Great Power Comes Great Responsibility’: From Age-Old Axiom to Spider-Man’s Mantra It all started with Jesus. Or Muhammad. Or the Reign of Terror. By Ellen Gutoskey |Mar 29, 2024 https://www.mentalfloss.com/posts/with-great-power-comes-great-responsibility-phrase-origins #DefyTheSpin #OwnTheChoices
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!
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
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 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.)
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
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:
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.
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.
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.
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-threateningFungal 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 .
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.
Art For Arachnoiditis 