Tag Archives: #arachnoiditisSurvivor

Day 2~ November is Art Every Day Month

Hand made paper & skeleton leaf collage
Found these with my bonzai maples when I was getting ready to tuck them in for winter.

An avid nature lover, hiker, and  gardener when Arachnoiditis entered my life; I had to find a way to keep those healing practices around me. So, I created my own indigenous Bonzai Garden.

See [Downsizing to Bonzai.]

This year as I prepared the roots for the winter season, I came across these two perfectly tiny fully intact miniature leaves that struck me being so charming I must find some way to preserve them.  I decided they would be quite lovely mounted on some of my own home made paper. Here is a photo of them drying on my art table.

Digital Collage of Indigenous Bonzai Roots
Indigenous Bonzai Roots ~ A Photo from my garden

Saying goodbye to the shining days of summer; I often battle with melancholy as winter approaches. It is a great comfort to know that each season this is a manageable and enjoyable task that allows me to get my hands into the earth before the ground freezes. This process helps me remember the beauty of the closing season with gratitude and to feel prepared for whatever winter will bring.

NOTES FROM AEDM 2015 DAY 1

I have decided to participate in Leah Piken Kolidas’ Art Every Day Month Challenge 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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Preparing for the Exhibit from SheilaLynnK Art Studio

I am posting a lot about the prep for the exhibit on my blog during my Thirty, Thirty, Thirty 2015 blogpost project. This year 30.30.30 means Thirty days, Thirty Posts, Thirty minutes each.

If you missed an update on Facebook, you will probably find it there.

Here is the post from Day 9.

Day 9~ Transformations and Triggers

Map of the Survivors Collage
is based on entries submitted for our live digital Map

The Map of the Spinal Arachnoiditis Survivors Registered at the Art For Arachnoiditis Project

has evolved into a mixed-media Google Maps collage project. At 218 registered Survivors, it requires some creative placement of all the parts to ensure we don’t leave anyone out.
Each registered location will be marked with Arachnoiditis Awareness Map Pin. Assembled and contributed to the project by Linda Funsch, the designer of the Awareness Ribbon.
The Map came late to the project plan. As more people discovered the project it seemed to make sense to find out where they were from. The next step was to keep a record of it so that Survivors in geographic proximity could find each other and share resources.
After that, it seemed appropriate to create something which will show how this project is bringing Survivors together from around the world.
Originally intended as a large community youth project, a serious illness interrupted the group leader’s plans. So,  the Map is now slowly being created in my studio. I believe it will continue to transform as this project grows.
Sanctuary and Boundaries
I hadn’t really envisioned the map as a collage project. The Method Muse of my Sanctuary Collage seems to have adhered itself to other projects in the studio.
Other Transformations…. The Opening Reception Workshop (for a fee) has evolved into a FREE Independent Adaptive Art Activity. Those attending will have the opportunity to create an art project using the Ostrich Cot. The Activity will be timed to show the importance of Time Management when Living and Working with Arachnoiditis.
New Supplies for the Independent Adaptive Art Activities
Ostrich Cot with NEW face cushion
and Drawing the Survivor Portrait for Karen
Even My Ostrich Cot is still transforming. My NEW cushion for my face arrived today. The cot works quite well as is when you get it. I have found though that when it is re-purposed for long term and frequent use it helps to add individual ergonomic adjustments and pain relief tools (i.e. extra padding under the abdomen, a knee pillow, neck and shoulder heating pad, etc.). The Ostrich Cot helps me to remain productive during my horizontal time. I sometime push myself to stay vertical too long because I have other work to do or simply because it’s really stinkin’ boring just laying here looking at the ceiling.
I keep saying I am going to paint a mural on the ceiling as another method of working horizontally but, I haven’t quite worked out the logistics or the balance to climb up and down from the scaffolding so that I can lay on my back to paint it. Another one of those Projects for Another Day.

TRIGGERS

In the world of work, art, chronic pain, permanent disability, personal evolution, and self-employment there are many triggers to transformation.  One of those is a true appreciation for the work of other artists.
This morning a friend showed me a wonderful video of the making of a Papier Mache Dragon Trophy by Dan Reeder as I was in the middle of appreciating the quality of the time lapsed video and looking forward to seeing the end result my friend said,
“This is time lapsed and taking a really long time. It must be months and months of work! We’re talking MONTHS! What you’re doing is nothing!” 
 
In an instant my appreciation was stifled by the initial hurt– immediately followed by the wordless amazement I had for this friend’s inability to comprehend the scope of what I am doing.
Knowing absolutely nothing about the artist, I didn’t feel I could respond with anything like, “What else is he doing with his time? What other obligations does he have? What limitations is he working with? How long can HE be vertical before he has to stop working?”
All of these thoughts machine-gunned through my mind. The safety must have been on my mouth-trigger. No words came out.
The majority of my work relies on self motivation and self discipline. My faith in what I am doing is often undermined by weaknesses in those areas. lack of validation, a perceived lack of proof that it matters to anyone else…and some doubt as to my ability to actually DO these things at all.
This tense cloud hung over my day. Pushing it to the back of my mind, I continued working and enjoying parts of my day. Eventually, a muscle relaxer was involved to ease the consequential muscle spasms. (This is an established result of STIFLING since onset of arachnoiditis. I should know better.)
I was angry…not exactly at my friend…I had a lot of mixed disappointment-laced feelings there that I still haven’t quite figured out. I reminded myself that this person has a well-deserved place in my heart.
To dwell on this one thing and take it out of context, no matter how truthfully he had just inadvertently expressed his lack of knowledge about what I do,  was not fair to our friendship. Although it was a pretty insensitive thing for him to say, I am certain there was not any malice intended and, well… there is no unwritten law that states he must fully grasp the time, effort, process, or outcome of my work. …but, it would be nice if he (and other people) did.
I think part of my anger was about the way that even after all this time I STILL felt like I had to justify and defend what I am doing. I shouldn’t feel any need to compare my life, circumstances, or work to that of this (or any other) artist. There is no need to quantify or explain it to my friend(s). I sense no compulsion from them to do anything like that in reference to what THEY do.
 I see this as a Trigger, not JUST for muscle spasms, but as a push to STOP falling back into that place.
Old habits die hard. It is long past time for me to transform into a person who fully accepts that THIS is who I am. THIS is what I do. IT and I have value that does not need validation from any other source. I am not who I thought I’d be…but, “I am exactly the person that I WANT to be.” Amanda Palmer
Root:30 Day Art Journal Project (2014) ~ from the Day 9 entry.
Start at DAY 1 of Thirty, Thirty, Thirty 2015

2015-2016 Art By Arachnoiditis Survivors REGISTRATION FORM

The FIRST Art For Arachnoiditis Project Exhibit: April 18, 2015 – May 8, 2015. Opening Reception April 18, 2015 1-4pm at the Fountain Arts Center, Belmont, NY….and STILL TOURING UNTIL DECEMBER 30, 2015!

So…. Then What?

YEAR 2 ~the 2015-2016 cycle of

The Art For Arachnoiditis Project.

SUBSCRIBE HERE TO RECEIVE PROJECT NEWS IN YOUR EMAIL (published quarterly)

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.

All other entries must be submitted with the

2015-2016 Registration Form and $5 Registration Fee.

Mailed Payable to: The Art For Arachnoiditis Project at SheilaLynnK Art Studio 345 South Main Street Wellsville, NY 14895 

Be sure to read the Registration form as some of the categories and requirements have changed

ALL NEW!!! Survivor’s Song Competition 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.                        Winner to be announced March 26, 2016.                                                                                                                                [Survivors’ Song Search is OPEN to ANY poet/singer/musician inclined to inspire the Survivors through words and music.]

All Arachnoiditis Survivors who submit work to the Art For Arachnoiditis Project

 will be included in a Raffle to Win your own Arachnoiditis Survivor Portrait Package from SheilaLynnK Art Studio.

 Raffle Winner to be announced February 25, 2016.

Registration Form

The Art For Arachnoiditis Project 2015-2016 Registration Form
The Art For Arachnoiditis Project 2015-2016 Registration Form
Search 4 ArachnoiditisSurvivors Song
Survivors’ Song Search

Together We Change Tomorrow ~ Karen’s Survivor Story

Together We Fight to Change Tomorrow.
Together We Fight to Change Tomorrow.
Together We Fight to Change Tomorrow #2
Together We Fight to Change Tomorrow #2

Life With Arachnoiditis Co-founder, Karen Kovacik Early, believes Life With Arachnoiditis must be approached with an attitude of hope. She knows, first-hand, that it is a daily struggle and that some days are easier than others. When I first discovered I had arachnoiditis, Karen, a complete stranger to me at the time, was one of the few people who took the time to help me figure out what was happening, and more importantly, helped me to find the courage to discover my own way to have a Life with arachnoiditis stabbing its way right through the center. Because living is truly about so much more than survival, I will be eternally thankful for her support, assistance, and guidance during that very difficult time.

This is her Arachnoiditis Survivor Story as posted on the Life With Arachnoiditis Website.

Shared here with her generous and open-minded consent; she is the next recipient of

Arachnoiditis Survivor: A Portrait of Resilience Against Patient Harm in America.

I am looking forward to doing her portrait. ~slk

 _____________________________________________________________________________________________

Hi there! I’m Karen. Friends call me KK, Smiley, Curly, Dances with Deer and now Dances with Wahoo!  My claim to fame is my sense of humor even in the face of uncertainties. After all, isn’t life uncertain? Isn’t every day a gift? Isn’t that why today is called the “present” … because it is a “gift?”  I’ve been up, down, and I’ve been blessed beyond measure as I have touched the face of this illness many times escaping relatively unharmed.  I have hope and faith in knowing we will find answers for those suffering much worse than I have ever been.

Let me be brief with my history.  At age 12, I had a serious car accident in which I was thrown through the windshield and back into the car. Transfused with 32 (yes, 32) units of blood and suffered a cardiac arrest. In the 60’s, people did not live through that level of trauma.  I was blessed. At age 21, I had my first spinal fusion: L4-L5-S1 and did great until a car accident in 1980. They found broken rods in 1981 and they fused L4-L5-S1 and removed instrumentation. That surgery was not successful, however, I thrived through 23 years running 5K’s, jogging daily, swimming and being as active as possible until November 2003. Let me also add I had an undiagnosed neck fracture resulting in severe spinal stenosis at C5-C6 which was repaired in 2001, coming out of surgery with less pain than when I went into surgery. In November 2003, I developed CES (cauda equina syndrome) and had emergency surgery on a Saturday. Surgery lasted 6.5 hours when it was anticipated it would take 3 hours. They found a real mess. L3-L4-L5-S1 was cleaned up with my surgeon carefully removing scar tissue scattered throughout my spinal canal with bone fragments encapsulated inside. He then fused and inserted 2 state-of-the-art spacers plus instrumented with rods and screws from L3-S1. I recovered beautifully although I had to learn to walk unaided and learn to balance again which I did from the morning following surgery. In June 2006, I fell down a flight of stairs without realizing I was injured. By October 2006, I was experiencing another round of more serious CES.  In November 2006, I underwent a fusion revision adding L2 to L3-L4-L5-S1. Another spacer was added at L2-3. L2 to S1 was reinstrumented with new rods leaving screws intact from L3-S1 adding new screws at L2. It was during this time we believe a nick in the dura may have occurred causing arachnoiditis, and/or exacerbating, existing arachnoiditis. Let me give credit where it is due: my CES was twice successfully resolved by my highly skilled surgeon, George Frey, MD, Colorado Comprehensive Spine Institute.

Some months following the last surgery, there seemed to be no diagnosis found for new pain and neurological issues. I had a sense there was more to the situation and sought out another opinion on my own across the state at Durango Spine. Lance Hamlin, PA to Dr. Youssef, identified the arachnoiditis in under 2 minutes of MRI review and explained it to me. At that time, a spinal stimulator was mentioned as a possible option. Instead, I opted for physical therapy which helped immensely. Then I started researching in an effort to find answers. Since November 2008 I have been in experimental treatment which is proving to be highly successful for me. It is my firm belief my arachnoiditis is not progressing. It is anticipated that I will remain in treatment indefinitely. MRI follow up is planned to be able to quantitatively document my progress sometime around the three year mark.

A natural approach to my Arachnoiditis continues. My progress from November 2008 to present is nothing short of a miracle.  My current IV therapy is not a formal clinical trial rather a natural approach to treatment overseen by my physician/researcher (an ACAM provider and integrative medicine physician). I do NOT recommend anyone attempt to duplicate this therapy without the guidance of your doctor.  I’m the first one to admit some of our efforts have made me ill while other efforts have been stellar performers.

I’ve learned the “impossible just takes longer!”  With all my heart, I hope we are going to be able to “document” a reduction in the inflammatory disease process we believe may be involved with Arachnoiditis.

 My natural therapy began November 2008 when I was in extreme pain and having difficulty walking and balancing. June 2009 I was able to  walk 4.4 miles four to six times a week. Other activities include mountain biking, snow skiing, whitewater paddling, snorkeling, fishing, hiking, swimming, boating, and more. I traveled to the Mexico beach in February 2009 and spent most of April 2009 in South Florida and the Florida Keys, fishing and snorkeling. My pain level is decreasing every day. Leg and nerve pain is almost non existent and my back no longer aches every second. My regularly scheduled pain medications were reduced to ZERO as of May 25, 2009.  I am having the time of my life.

My IV therapy consists of high dose vitamin C and magnesium given intravenously ideally at least once a week. We are detoxifying with high dose vitamin E, high dose cholecalciferol (vitamin D3), high dose omega-3-acid ethyl esters and Nattokinase. There are other items included in my treatment which seem helpful. We would hope to be able to demonstrate reduction of the scar tissue within a few years via high resolution MRI. 

For those of you suffering from Arachnoiditis, may I suggest as mandatory reading:  Anatomy of an Illness by Norman Cousins.  There is a significant psychological component to health and wellness.  Norman Cousins outlines his true story written after his diagnosis with an incurable terminal illness.  Mr. Cousins was able to return himself to an acceptable quality of life utilizing high dose vitamin C therapy, laughter and faith. Each of us has a duty to utilize faith in an effort to improve our own situation. I believe faith is involved with the placebo effect that has been measured in past medical studies. You MUST read Mr. Cousins’ book …. the foundation of my fight for life was formulated from this book.

Please also refer to the study online published by the British Journal of Radiology found at http://bjr.birjournals.org/cgi/content/full/77/922/885 for a very enlightening study on epidural fibrosis.

My surgical history for your reference:
1974 – Fusion L4-S1 with Harrington Rods & bone graft
1981 – Broken rods, refuse L4-S1, remove rods, (failed)
03/01 – Fusion C5/6, titanium plate, bone graft
11-03 – Fusion L3-S1, rods, bone graft & allograft, 2 spacers (CES symptoms, emergency surgery)11/06 – Fusion L2-S1, rods, allograft, additional spacer, new rods/old screws (CES symptoms)
06/08 – Recurring CES, hospitalization, countless MRI’s, CT scans, more.
09-10/08 – Arachnoiditis L3/L5 diagnosed by different provider, self referred (turns out MRI records review shows scarring present as early as the middle of 2006, so diagnosis was a long time in coming)
11/08 – Started experimental therapy including IV therapy, nattokinnase, omega 3, more
03/10 – New impingement at C3/4 and C4/5

Under no circumstances should anyone interpret my story as medical advice nor employ any attempts at this therapy without a doctor supervisionMy very experimental therapy, as outlined above, is not detailed in an attempt to prevent anyone from attempting treatment without a professional. Should you desire more information, please have your physician email me and I will be happy to refer your doctor to my doctor. 

Again, my love to you all. I am here for you. I do not represent my treatment as a cure for you … it has worked for me. Karen – Email kkovacik12@netzero.com 

This is “My Journey” This write up is not medical advice nor does it represent any endorsement by LWA.  Information represents my “personal journey” and is written in hopes of encouraging you to seek out ALL avenues of treatment.  

My Decision to “Stand up and FIGHT” – Prior to diagnosis I was experiencing CES symptoms, nerve pain and a host of other symptoms. When diagnosed in 2008, I was devastated. Then I decided, ” I’m not a quitter. I’m going to STAND UP AND FIGHT!”   I decided to pull out all the stops and fight like I’ve never fought before.  **Attitude is everything**

January 2009-June 2009: January 2009, I was still taking 300+ mg Demerol a day. As of May 25, 2009, my Demerol intake is zero. January 2009, I took 30mg-60mg diazepam per day. As of June 5, 2009, I do not take diazepam (dalium was prescribed daily from 1997 for severe muscle spasms).  January 2009-March 2009 I was able to go snow skiing, hiking, fishing, snorkeling, boating, beachcombing and traveling. June 18, 2009 I achieved my goal of walking 6.0 miles WITHOUT pain medication. Nerve pain has gone from 24/7 to a few times a month. I rarely have serious pain. This sounds outrageous, but it is my path. I am healthier than many 30 year olds. I am 57 years old and I have Arachnoiditis.

August 2009: I remain free of narcotics and diazepam. Nights are still tough and I have insomnia generated by diazepam withdrawal (diazepam withdrawal is difficult and quite prolonged). I found reducing my hikes from 6 miles to 4.4 miles allows for more hikes. July 2009, I paddled class IV whitewater and paddled a 4 day 75-mile kayak trip on the Green River in Utah sleeping on the river banks for 3 nights! I also flew to Florida for my high school reunion to celebrate with friends.  
November  2009 (3rd patient has IV therapy): I am so very thankful. A little over a year ago my life was looking pretty bleak. Right now, life looks promising. I am narcotics free over 6 months. This morning, for the first time, I did my hike up the mountain with 2 tylenol and NO robaxin. For a few months now I have had twice weekly IV therapy. Ascorbic acid (vitamin C) seems to work best for me at 40 grams with 4 grams of magnesium. The second treatment of the week is phosphatidylcholine infusion with GSH push followed by sterile water. Almost all leg nerve pain is gone … most of the time.  It kicks up when I go skiing.  I can lift my grandson (about 35#), I can load 20# bags of bird seed and dog food into my shopping cart!. The past few weeks I have crawled into bed at night without pain creeping in after a few minutes. I am so thankful and so very humbled by the progress we’ve made. 

January 2010: I am still able to work and play without pain medication. Still taking 3000mg Robaxin per day. I’m also using valerian root for muscle spasms and taking GABA supplements now. The Patricia Kane Protocol was absolutely helpful to me. I’ve found I cannot receive both ascorbic acid/magnesium and the Patricia Kane Protocol the same day. I need at least a day or two between the treatments. 

February 2010 (4th patient has IV therapy): This journey has taken me places I never dreamed I would be. Patients from all walks of life have contacted me from all over the world. New friends and new challenges lie ahead. Dear new friendships have been made and I would not have missed these new friends for the world.   I’ve been able to meet four patients with Arachnoiditis.

March 2010 (5th patient has IV therapy): An MRI this month revealed some significant impingement at C3/4-C4/5, just above C5/6 fusion done around 2000/2001. I was able to see Lance Hamlin at Spine Colorado in Durango and he is as awesome as ever! I’ve started physical therapy and traction at home in an effort to strengthen my neck. Worst case scenario will be surgery at C3/4-C4/5 which I am going to work to avoid at all costs.  Pain medication was required at initial onset for 2 days and has been required several times for extreme pain. I am still battling neck and arm pain as of March 18, 2010 but I appear to be making progress. I’ve just completed a 5 mile hike today and it is my 5th hike this week.

IV therapy continues and remains the mainstay of my treatment. A new patient has again come on board and also had great initial results to two initial treatments. Connie Keeler in Tennessee remains improved and follows a similar course. It’s a long road and there are no “cures,” but remission/improvement seems attainable.  This is excellent news.  

April 23, 2010: I continue to battle neck issues although the pain is not nearly as severe as in March. Spine Colorado (Durango) continues to track my progress in three week intervals. I am very pleased with Lance Hamlin, the PA at Spine Colorado.  If surgery is the ultimate route, I remain confident I will get excellent care. We realize surgery is one of the worst possible risks with Arachnoiditis. Surgery will be considered only after all other options are exhausted. Intermittent pain medication has been used for the neck injury issues (a few times a week) with less than satisfactory results.

This month I traveled to Islamorada in the Florida Keys to visit friends. It required me to miss IV therapy and I went two weeks between IV’s. By the tenth day I was starting to experience pain from Arachnoiditis (I did not take my liposomal vitamin C and glutathione with me as I did in the prior trip). Within 12 hours of IV administration on my return, my back and leg pain again totally disappeared. I wish the IV therapy had the same effect on my neck injury, it does not.  I’ve been hiking 3-5 days a week, weather permitting. As much as I wish I could say IV therapy is a “cure,” I feel it is a “roll back” and/or “remission state.”  This alone is a Godsend and, for the immediate future, I continue in IV treatment to be able to live a full life.

Last week, another patient was experiencing horrific pain (she was not on IV therapy). She was administered the IV protocol and experienced dramatic improvement in pain levels. The IV therapy continues to demonstrate pain relief in all the patients receiving the same protocol as mine.  This is very encouraging.  I suspect, in time, this protocol might be considered one of the “mainstay” treatments in helping to squelch the inflammation.

May 06, 2010: Things are back on track.  I’m feeling extremely well. The neck issue has subsided, FINALLY.  Back up to hiking 5 days a week (weather is finally cooperating a little bit). I have to say, the exercise is not optional… the endorphins really help the pain levels. No narcotics on board and May 25th will mark the ONE YEAR MARK since I’ve been off regularly scheduled pain medications! There were maybe 3 or 4 weeks where I had to have pain meds 2 or 3 times within a given week due to the neck injury in March and April.  June 3rd will be a year off diazepam.  WOW.  Now preparing for Congress in July. It is so exciting to be able to go to the Congress meeting and I can’t wait to share my path. God is good … all the time.

June 14, 2010: What an exciting 6 weeks it has been. Ascorbic IV was ramped up to 60 grams, PK Protocol ramped up to maximum levels, bioidenticals on board, chelation once weekly, liposomal ascorbic and glutathione have been back on board for about a month. I feel GREAT.  Robaxin down to 500mg a day. 

I don’t think I’ve ever felt as much excitement as I do for the upcoming Congress and our trip to Chambery, France. Packing has begun and I leave June 25 for Knoxville, TN to pick up Connie Keeler. We fly to Paris for four days of fun on June 26, then on to Chambery with the rest of our group on July 1. We are READY! 

November 5, 2010: The Congress event was amazing. Transcripts will be available when they are able to be completed, a long and time consuming process.  I learned at Congress there is another Arachnoiditis patient that has gotten his life back through a similar process but without IV therapy.

At Congress, I was privileged to meet Dr. Jan-Peter Warnke, the only surgeon in the world performing a particular type of thecaloscopy for Arachnoiditis.  On viewing the procedure via video at the Congress, it became clear why it may work for patients with no other options.  An Arachnoiditis friend of mine had surgery September 19, 2010 and was “pain free” by mid October.  An amazing accomplishment.  Another great advancement and hope for the future.

A note on IV therapy:  The order of administration of the solutions seems to make a huge difference.  In October it was necessary for me to be away for an extended period of time due to a health emergency with my parents. I had treatment in Florida and they administered the PK Protocol before the ascorbic/mag.  While side effects were far less, pain relief was also far less.  We tried the protocol turned around for 3 treatments …. it does not work well at all for me. I am home and we have reversed the order back to 60 grams ascorbic/4 grams magnesium first, then the PK Protocol last.  There are more side effects, yes, but definite difference in pain relief.  It may take a few more treatments to gain back the ground I lost.  Experimental treatment continues to work for me. 

November 30, 2010:  My new physician, Dr. Eugene O’Neill, of Rio Grande Hospital Clinic, refuses to read the literature supplied to him on Arachnoiditis on Oct. 19, 2010. Dr. O’Neill is unwilling to learn anything about my disease or the Patricia Kane Protocol. He says he doesn’t have the time and his malpractice insurance won’t cover it.  On my last visit on Nov. 30, 2010, I brought Dr. Sarah Fox’ short paper ….a brief Summary about Arachnoiditis for busy physicians. When I told Dr. O’Neill I’d like to briefly discuss this paper so he could understand why I refuse preventative tests (mammograms, pap smears, other preventative tests), he went into a tirade about the PK Protocol, that he would not prescribe pain medication to even one more patient, how a patient sued him for saving his life, how 80% of the local population of patients in Monte Vista, Colorado are seeking narcotics and selling them, and said maybe I should go to Washington to see Ralph Holsworth.  Never have I met a physician that cares about his patients less. 

December 3, 2010:  Received a call from Dr. Ralph Holsworth yesterday. He has located a new provider for me familiar with the PK Protocol and willing to administer the ascorbic/mag IV.   

December 2010 – March 2014: It’s been a long time since I updated patients. December 2010 through June 2014 found me in Florida living with my mom and dad on an emergency basis as a court appointed guardian.  My dad passed away in January 2011 and mom passed June 2013. During this time frame I found a local practice to continue my IV treatment but have had no real physician guidance for Arachnoiditis.  

While in Florida, I joined the VAST senior swim team.  Unbelievably, I have competed in local, state and international level swim competitions medalling at all levels!  In 2011, I swam two relays with 3 team mates setting two new state records. In 2012, I swam first place at state level in backstroke. I’ve medalled in freestyle, backstroke and breaststroke. Who knew I could swim?  The swimming definitely keeps me in shape. AND, IT EMPOWERS ME!  When I slip into the pool, I am called by a nickname Coach Gary gave me the first week on the team, “Martini.”  I think of Martini like Clark Kent changing in the phone book into Superman. When I change into “Martini,” I tell myself I can do anything, I really do. 

New issues have presented themselves. Adjacent segment issues both sides of C5-C6 along with a C7 radiculopathy. Adjacent segment issues at T12/L1. March 2014 was my first lumbar MRI since starting this journey in 2008. It reveals Adhesive Arachnoiditis is still present. The ultimate result of IV treatment seems to be found in keeping the inflammation in check that keeps pain under control most of the time. Structural damage to my spine from repetitive surgeries continues.  If I am honest with myself, I have not been overly diligent during this three year time frame to stick to the protocol that best controls pain and symptoms. 

WHAT NOW?  What happens now is a choice I think.  I can crumble under the news and be ultra cautious avoiding too much activity. Or I can strictly follow the protocol and do everything I possibly can to stay active.  In the past some of my children have become very angry with me because I chose to do things that “could” result in pain and injury.  From where I sit, I have gone through a lot of hell to sit on the sidelines.  The very point of extensive surgery was to be able to participate in life.  There is no guarantee, not for any of us.

During the past 5 years I have lost multiple friends and patients to the fire of Arachnoiditis and the number seems to be increasing.  I think they would be very disappointed if I gave up. I can absolutely see Claudine in my mind’s eye as I swim. In my mind’s eye Claudine is healthy, jumping up and down, clapping and cheering me on from Heaven.  I choose to live life to the fullest. I can see Sheila laying down on her artist bed creating art and “showing up” for life each day, videoing her efforts and incredible courage. I choose to show up.  I see Terri and so many others fighting the political machine to prevent more Arachnoiditis patients. I choose to cheer them on. 

What now?  Back to the protocol, back to the pool and bike. I choose activity, courage and to show up.  I AM HERE. And I still believe, “Together we change tomorrow.”

Contact and Updates:

To stay updated on my activities, send a friend request on Facebook. Look up Karen Kovacik Early and in your friend request message box, please identify yourself as having read my bio on Life With Arachnoiditis and I will accept your friend request.

Go to www.acam.org to learn more about alternative medicine.  I’ve learned the “impossible just takes longer!”  I am very close to having my life back … it will be a life long journey I believe.

 LWA Mission Statement

Life with Arachnoiditis is a not-for-profit group open to EVERYONE. Our mission is to provide a hope-filled environment highlighting information, education and research. We also offer one-on-one communication with others affected by Arachnoiditis, Epidural Fibrosis, Failed Back Surgery Syndrome and other related spinal disorders.

Mission Statement by: Jon McHann, Grace Farm – Manchester, TN

Starting March with a Bloggy Project Update from Sheila

Art For Arachnoiditis Project Admin Team (photo by my grandson)
Art For Arachnoiditis Project Admin Team (photo by my grandson)

Things here have been REALLY busy in the Art For Arachnoiditis Project Operations Office.

The Fiscal Sponsorship contract with the New York Foundation for the Arts (NYFA) has been finalized. Soon our project page will be live there. I will share that link as soon as I have it.

To make it easier for Arachnoiditis Survivors to find us, The Art For Arachnoiditis Project has now been upgraded to a VIP Listing at The Wellness Universe  Online Directory of Resources to Expand Your Well-Being.

” The Mission at the Wellness Universe: The seven areas of wellness are: Emotional, Environmental, Intellectual, Occupational, Physical, Social & Spiritual. From people offering support, to products that improve the betterment of your life, the environment, animals, awareness and education, we here at The Wellness Universe strive to find the best of those resources and list them in a directory for you.”

VIP Listing at WU #WUVIP
VIP Listing at WU #WUVIP

I have been doing a lot of PR & Prep (lesson plans, creating our Healing Power of Art Presentation, seeking product sponsors, and writing our invitations) for the exhibit opening reception and workshop.

Registered Arachnoiditis Survivors do not have to pay a fee to attend the workshop. Limited space is available. Please be sure to register. Survivors Planning to attend the Exhibit & Opening Reception and/or Workshop, please contact the Studio; to register and let us know any necessary accommodations you may require at the Fountain Arts Center in Belmont, NY.                                                                                         Workshop Registration Deadline: March 20th.

The prints of your entries look amazing!  I have just ordered all of the frames and mat boards. I hope the delivery truck can get here. The snow and slush is STILL coming down!

Don’t forget! I have also been processing your forms and photos so check out the list of  registrations/entries.  My creative spirit was assigned the task of designing the  digital collages for the Arachnoiditis In Real Life digital photo series while my inner clerk was doing project administrative tasks (conquering the bottom line). Did I mention the “Clerk” (at tax time) and the “Creative Spirit” have to share the same brain

With the “Best Book Warrior” ? ….who has been revising and recovering from her own revisions to the publication agenda for the Book Project: Still Standing, Sometimes. She is  determined to make this publication a valuable and reputable resource for Arachnoiditis Survival, Awareness,  and Prevention.

THIS WEEK: Drawing Survivor Portraits will resume between organizing (finding) community volunteers to help paint the Map of the Survivors. As an incentive, volunteers receive B~Arter Bucks from SheilaLynnK Art Studio for participating in the Map-making project. Did you know there are over 186 locations from around the world registered to be displayed on the map so far?

Thanks so much to Linda Funsch! She is putting the Arachnoiditis Awareness ribbon stickers on all of the map flag pins. Each location will have it’s own pin with an Awareness Ribbon. The map is scheduled to be finished in time for display at the exhibit.

TECH UPGRADES ARE HERE! I am patiently waiting for the “Tech Support Crew Chief” to install them.

My own personal aching arachnoiditis entity is not hesitating to add her voice to these proceedings. She attacks at some of the most inopportune moments in the middle of very important tasks. However, I am partially to blame as I have been pushing myself into too much vertical activity (she is very vocal in her objection to this) while waiting for tech upgrades that will allow me to resume doing more of the computer work from a horizontal position. ….did I mention I am also the tech support crew chief at the Art For Arachnoiditis Project?

A Message From the Gravitationally Challenged
A Message From the Gravitationally Challenged TECH Support Team.

In answer to the recent question, “What do you do when you are NOT working on the Art For Arachnoiditis Project?”

My first moving meditation zentangle, ZenFeathers.

Putting some of My own photography in the Wellsville Art Association Annual Photo Show

Planning SWAN Day Party 2015 at the Belfast Organization for Artists

and on March 6th…starting Muse Moving Music Friday, a virtual gathering to share and enjoy music appreciation via Youtube and other online music sources at SheilaLynnK Art Studio. Happening every other Friday. Anyone can  join us!

and losing an eleven-day game of Scooby-Doo Monopoly!
and losing an eleven-day game of         Scooby-Doo Monopoly with one of my favorite artists!

Resources for Your Well-Being

COUNTING DOWN TO LIFT OFF! The Wellness Universe Website Launches Today!
Directory of Resources to Expand Your Well-Being

WELCOME TO THE WELLNESS UNIVERSE LAUNCH!

Efforts at the studio to contribute

to a better world have been recognized. 

Dedicated to the Wellness and Empowerment of Arachnoiditis Survivors, the Art For Arachnoiditis Project at SheilaLynnK Art Studio is an official Member of this Directory. 

At no cost to this charitable project, this directory makes the Art For Arachnoiditis Project and other valuable Wellness resources for Arachnoiditis Survivors available to survivors not currently subscribed to Facebook. 

The Wellness Universe.com website launches TODAY! 



What seems like a brilliant, keyword searchable catalog of pages in this online directory are far more than that. The actual people creating these pages come together to better the world through their individual efforts, as a whole….TheWellnessUniverse.com is a natural solution to search for content people want to see.” ~BBC Record London Soul Ventures Corps Launches Directory of Facebook Pages


“The Wellness Universe answers the need for an organized resource where the public can reference any topic related to wellness,” states Michelle Gould



Launching Today

Resources for your Well-Being,

www.TheWellnessUniverse.com 

Join us! Find Love, Support, Hope, Inspiration, Education from the BEST PAGES of Facebook. 

Wishing you Wellness in the year to come! 

Easy Art Activity #18

Creative Adaptability:

Working toward Productive Horizontal Time

Working toward Productive Horizontal Time

A New Approach
A New Approach

“It’s difficult to get your creative juices flowing if you’re always being practical, following rules, afraid to make mistakes, not looking into outside areas, or under the influence of any of the other mental locks.”

— Roger Von Oech, A Whack on the Side of the Head: How You Can Be More Creative

As I was working through Day 18 of the FLOW Journal Project , it occurred to me that many of my successful adaptations to accommodate arachnoiditis were ALL about breaking the rules. Living with Arachnoiditis meant that I needed structure and time management to keep my body functioning at its best. However, ADAPTING to arachnoiditis meant that I had to break most of the “rules” and “systems” that had defined my life prior to this medical injury.

“Gravity Sucks! …I began to realize that I was gravitationally challenged.” ~slk Still Standing, Sometimes

While my trusted medical care providers were trying to help me figure out what had actually happened, I remember saying that if I could just go through life suspended from boots attached to runners on the ceiling- like clothing at the dry cleaner’s- I would be fine. Although that was NOT a practical adaptation to make, it was a light bulb to the fact that I needed to STOP trying to function within traditional, socially acceptable boundaries.

I hated being in bed looking at the ceiling..doing NOTHING. In the beginning there was so much pain that I didn’t really notice. But, gradually it became evident that horizontal time was controlling the pain. I had to figure out some way to be productive WHILE I was horizontal. I designed the ProneWorks table and consulted with occupational therapy to find out more about what my body would need to work this way. It became part of my studio business plan and I incorporated the design into my small business grant application. It was going to cost $1800 to make the first prototype.

The week before I was scheduled to meet with the carpenter/upholsterer to finalize arrangements, I discovered the Ostrich Cot. Although it did not have a built in structure to accommodate standard positional cardiovascular concerns, with a price tag of $49.99 at that time, I had to try it.  Thinking outside of the box  helped me preserve my independence. With appropriate timing to permit proper blood flow, the Ostrich Cot became the foundation for me to resume making art.  I know I am still working to adjust my ideas about “the box” because I get self-conscious using the cot in front of other people. Being/working in the prone position feels simultaneously liberating and vulnerable. I am hoping to demonstrate the cot and allow others to use it during the Opening Reception for our FIRST public art exhibit.

Art ACTIVITY #18  Today, make a simple doodle or sketch of the ideal environment OR perfect assistive device that would make living with arachnoiditis easier for you. This environment can contain known objects or new innovations that you fantasize about. There are NO rules here. If drawing is uncomfortable for you, then use cut out images and paste together a NEW device suited just for you. Defy Gravity.

Extended Activity  Make a list of FIVE impractical activities you can do that support and will not conflict with your arachnoiditis-related needs.

My List 

Getting Horizontal after the trip to Indiana to interview Jack Pavlekovich
Getting Horizontal after the trip to Indiana to interview Jack Pavlekovich
  1.  Take a blanket and lay down in a public place…even if~especially if~ my body doesn’t really NEED to lay down right now.
  2. Fight Cabin Fever~ going out is hard, invite people into the studio but, ask or designate an alternate host/hostess to stand-in for me while I visit with everyone.
  3. Make my own ergonomic workstations…again.
  4. Publish the book
  5. Create an arachnoiditis adaptability class

You are invited to share your ideas, sketches, collages, and discoveries here.

Use the Registration Form if you would like your work today to be included in the FIRST Art For Arachnoiditis Project Public Exhibit. CALL FOR ENTRIES ENDS Feb. 15, 2015.