Monthly Archives: April 2015

The Sun In My Heart ~ An Arachnoiditis Survivor’s Ode to Spring

(A Poem about coping with Chronic Pain Inspired by the warm morning sun and The Cat In The Hat by Dr. Seuss) 

© Sheila L. Kalkbrenner

Spring Morning Flowers
Morning Sun

The sun, how it shown

It was too bright to stay

In the dark in the house

On this warm, warm, spring day

I sat there with wonder

On the deck, in the sun

And I said, “How I know

There is much to be done!”

The seeds did just sprout

And the debris from the fall

Still sits over the lawn

So, I wrote a new list

Found my yard shoes and all.

So, all I could do was to

Rake,

Dig,

And

Plant

And Oh! How I loved it!

Every little bit!

And When

Something went Buzz!

And I heard a loud Chirp!

I looked!

Then I saw them hovering About

The Bees!

And the Robins!

Spring! I had to shout!

And they chirped and buzzed

As I worked with the dirt all about.

I know I’ll be tired

But the sun is so sunny

And I can have

Lots of good fun that is funny!

I know some new ways that I can rest

In Between

I know some new tricks

So it won’t be so mean.

A lot of new things

I can do just for me

My Body

Will not mind at all what I do.

But, that Voice said, “No! No!”

Make that urge go away!

Tell the Sun and the Seeds

You just cannot go to play.

You should stay down here.

You should NOT move about.

You must be still here

When your Body’s worn out!”

“Now! Now! Have no fear.

Have no fear!” said my Heart.

“These things are not bad,”

Said the Heart that is smart.

“Why, we can have

Lots of good fun, if we move,

With one step at a time

We will get in the groove!”

“Lay me down!” said the Pain.

“This is no fun at all!

Lay me down!” said the Pain.

“You do know I could fall!”

“Have no fear!” said my Heart.

“We will go slow, start small.

We will do little bits

And rest to keep tall

With our tools in one hand

And our mat on the ground

This work is not all we can do!

When the sun is around!

“This is great!

Moving right now!” said my Heart.

“With my hat on my head

And my gloves in the dirt

I can plant these new seeds

I can work with my hands

And find edible weeds!

To be food on my dish

And know

I got up on my own, in the sun

Careful not to fall

But I knew

That was not all….

Slow at first

Nothing worse

Pacing the time

It is fun in the sun

But you have to know how.

I can slowly get out

With the plants and the trees

I will rest in the grass

I will do as I please.

At the pace to enjoy

All the warm things around

And Look! With Good sense

I can breathe with the Pain

I can work or have fun

And it’s keeping me sane!

But that is not all.

Oh, no.

That is NOT all…

That is what my Heart said…

It’s not all in my head.

I get up. I get down.

From the Spring to the Fall

And Pain is NOT

The One Boss of it all!

And my heart can sing, too

With Bees and with Birds

I will know all the words.

I work, then I rest

I know when it is time

I will stop when I should

Shining is good!

Now look what I’ve done

I have found a new way

Inside or outside

I can choose every day!

I worked and listened

The pain, will always stay

But my heart’s here, too

It can come out to play.

It should not be stuck

When my body cannot

I am out of the house

And I like it a lot!!

And it likes to be here

My heart, likes it a lot.

The green and the sun

It really hits the spot.

“I will NOT hide away

When the pain makes me slow!

And so,” said my Heart in the Sun

So,

So,

So,

I will listen

And do this the way that we know!”

My Body gave out.

But then strong as an ox

The faith in my Heart

Said, “Get out of this box!”

“It’s a hard dark box.

It is shut with a hook.

But look at this trick,”

Said my Heart.

“You can look!”

There is a hole in the top

The sun shines through this part.

It gets you out of the dark box,”

Said my Heart.

“In this spot there are things

That will show you just how

To reach through these walls

But, you must want to now.

Love will pick up that hook

You will see something new.

Two things. And I call them

New World and New You.

These things will not bite you.

They want to have fun.

Then out of the box

I walked into the sun!

My breath it came so fast

It said, “What will you do?

Would you like to find hope

With New World and New You?”

My Body said I

Was not sure what to be BE

But I chose to find strength

In New World and New Me.

I looked at them hard.

And my heart said, “Go, Go!”

They will you get out but, slow you must Go!”

You need to be there

The old body it’s not

Take it slow. Let it show.

It’s the one that you’ve got.

“No fear of the pain,”

Said the love in my heart.

“Can stop these Two Things.”

And then slowly I sat.

“They are strong. Oh, so strong

They have come here to stay

They will give you much love

On the best and worst days.”

“See Them. Just There. Next to Old You?”

Said my Heart.

“They work for new life,”

Said the Sun in my Heart.

“Yes! The pace is slow

And your body is on the cot

But you should not stay

In the BOX! You should not!

Oh, the things you will miss!

Oh, and miss you they will!

You have got to try it!

You are ALIVE STILL.”

Then my Body said, “I

Cannot run down the hall.

I will try these new things

And get up when I fall.”

Bump! Thump! Thump! Bump!

My hands broke down the wall.

New Me and New World

They woke up! They sat down!

Like the string of a kite

It all floated around.

The light of the day

The warm blue, green, and gold

Lifted the lid of the box

And renewed what was old!

Then these things walked about

With deep breathes, and short steps

And with hope and small dreams

In search of New Tricks

And I said,

“This is NOT the Old Way that I played

My body may fight it

But, it’s moving today.”

Then my Heart said, “Look! Look!”

And I knew something was near

“Your body is hurting now!

Do you hear?

Oh, What will you do with it?

How will you stay?

Up in this Life, like this

Will you hide it away?”

“You must decide fast!” said my Heart.

“Do you hear!

It’s your Life. Your Moment.

Just getting shorter

While you waste it right here.

Think of something to do!

You will have to work hard

For New World and New You!”

So, taking a small step

I reached out for the rail

And I said, “With some help

I can get there I bet.

I bet if I ASK

I will find those Things yet!”

Then, I held tight to the rail

Moved forward from the top

Pain, it came back. A rest.

These Two Things would not stop.

Then I said to the Pain,

“Now, I know you will stay

But, step to the side

These things can make a New Way!”

“Okay” said the Pain.

“I will stay by your side…

Oh, dear.

I can’t go

I can’t go

But you know

Your Two New Things opened

That dark box with the hook

And we both can get out

If we know how to work

Together, It’s good.” said the pain.

“We’ll do it your way, Yes.

But your body will hurt.

WE MIGHT MAKE A BIG MESS!

And it may be so big

And so deep and so tall,

We cannot pick it up

There may be no way at all!”

But, then!

Who was back for the day?

Why, my Heart!

“Have no fear of that mess,”

Said my brave little Heart.

“We’ve lived through this thing

And so…

There is always another

Good trick you should know.

Then, I felt it reflect

On the times I was down.

It remembered the pain

With cold snow swirling ’round

And the shakes, and the grief

And the aches, and the burn

And the looks, and the wish

For some sleep, and the night

And it put them away

And it said, “Now it’s Time.”

And it showed me the grace

And the joy in between.

Then my Body and Heart

Said to the Pain,

“Without any Fun?

Tell us. What does it mean?”

Tired of pain I did not know what to say.

Can I look for

The grace and the joy of each day?

With this Pain will I see it

Now, what will I do?

Well…

What would you do

IF your Body asked YOU?

~slk

© Sheila L. Kalkbrenner

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How to Help an Arachnoiditis Survivor

A New Way to Live With Spinal Arachnoiditis
From the Arachnoiditis In Real Life Digital Photo Series

How to Help an Arachnoiditis Survivor: Physical Rehabilitation & Recovery After Spinal Adhesive Arachnoiditis excerpt from Art For Arachnoiditis:Still Standing; Sometimes ~ ©Sheila L. Kalkbrenner      Please note that I am not a doctor or qualified medical practitioner. I am an experienced patient sharing what has worked for me in the hopes that other survivors may find something useful here.

First this IMPORTANT INFORMATION ABOUT PREVENTION

  1.       Arachnoiditis is a spinal cord injury caused by the neurotoxins in spinal injections and invasive spinal procedures. All patients should be monitored for symptoms of the inflammatory phase of arachnoiditis following these procedures. Certain early interventions and protocols can potentially minimize the permanent nerve injury and debilitating consequences which may occur after this phase.
  2.       Prior to giving consent for these procedures, obtain the name & dose of any medications that will be used during the procedure. Confirm that the drug is FDA approved for this purpose. If it is not, get a statement in writing which explains clearly the risks of this off-label use and why the physician plans to use it for this purpose. Check the FDA listing of adverse outcomes for the proposed medication prior to giving your consent.

Because this was NOT done in my case, I lived with undiagnosed chemical meningitis, the inflammatory phase of arachnoiditis, and subsequent spinal adhesive arachnoiditis in the lumbar and thoracic spine for three years before I received informed, accurate, and adequate care. My personal integrity, sanity, and mental stability came into question as the symptoms progressed with no diagnosis. I had no advocate willing to assist me in the adjustment to this permanent disability during that time. Many of those who have come before me suffered alone even longer before receiving assistance. Unlike the “usual” spinal cord injury, because I did not have an official diagnosis during this terrible time, there were very limited services and/or resources for recovery or adjustment available to me.

Family Circle Sketch
Day 12 Art Journal Entry

SUPPORT: FAMILY & FRIENDS CAN… Arachnoiditis Survivors often suffer lengthy periods of unexplained pain and neurological complications. Family members and friends are often at a loss about how to help. This sense of hopelessness and confusion can often cause them to distance themselves from the relationship. Because the medical community rarely (until very recently) even acknowledges the existence of arachnoiditis, this distance effectively leaves the survivor abandoned to cope with the consequences of this medical injury alone.

  1.       The best advice I can give for those who truly care is, don’t give up. If you need to have your own space to cope, take it. But, remember to come back. No matter the illness, “The core element of healing is connection. With connection, to self, to the World, to others and to the spirit, this creates a starting point for positive change & growth.” ~Amanda Scott   Yours can be the voice that keeps this injured/ill person connected to life.
  2.       Find out what your survivor can do comfortably and support them in doing it. Because Survivors often have delayed flares triggered by certain physical movement and activities, know that s/he may be unable to perform that exact same task tomorrow. Keep your expectations flexible to minimize disappointment, anger, and frustration for yourself and your survivor. {Examples: Your unemployable survivor may be able to participate in your company dinner party to be supportive of your career obligations. S/he may NOT be able to attend the company brunch the next morning due to flares triggered by the previous evening. Your survivor may be able to stop to get groceries today. Tomorrow s/he may be struggling just to drive home.}
  3.       Alternate tasks. Break daily chores down into more manageable components. Work with your Survivor to troubleshoot new methods of doing certain tasks to make them easier to accomplish. {Example: Sometimes I could get groceries but, had to go straight to bed when I got to the house. Eventually, my children understood the need to take turns bringing in the groceries and cooking dinner… It became evident that the air conditioning and cold temps in the refrigerated portion of the store were a trigger for multiple debilitating symptoms for me. I began to avoid this section. When possible, somebody would join me to get groceries and handle items in that section of the store. Or, eventually, I was able to have somebody pick up a few of these items for me while they were getting groceries for their own home. This, a seemingly small favor, made a big difference in what I was able to accomplish the rest of the day.}
  4.       Be respectfully observant. If you spend a lot of time with your Survivor, watch for subtle signs and symptoms of decline that develop before an ultimate body slam. {Example: prior to the crash & burn that would happen in the grocery store, I would start doing laps through the store, repeating aisles, looking at shelves but never really comprehending what was on them, picking up nothing, getting anxious and apprehensive, clenching my arms tightly across my chest or clinging to the shopping cart, feeling off-balance…I looked like an animal chasing its tail. My oldest daughter first noticed this pattern in my house when I would go from room to room like I was on a mission, but, ultimately I wasn’t doing anything. Shortly after this a crippling spinal headache would ensue and I would lose coordination between the left and right sides of my body. Now, we know that if this phenomenon happens, the neurons are not firing properly and I need to get horizontal asap.}
  5.       You can set up a schedule to assist with transportation issues. Arachnoiditis symptoms often impair the ability to drive. Have a list and a plan for each destination. This support is especially needed for medical appointments, but not exclusive to them. So, work together to set up a “car-pool” -type schedule so that the burden of this support does not fall on one person. Remember that your Survivor may actually be able to do it alone sometimes. Be flexible if the schedule changes or alters and you are not needed at the scheduled time. To minimize resentments be sure to set boundaries for your availability so that your Survivor knows when/how to reschedule in a manner that works for you.
  6.       Like you, your Survivor is struggling to come to terms with these changes and adjustments. Establish a safe and respectful method of communication which allows you to voice concerns that arise about his/her well-being and sharing of research and information that you might discover along the way. Try not to take it personally if your Survivor does not immediately follow your advice or guidance. Ultimately, s/he must do what works best today.
Art Journals Help with Adaptability
Art Journal Page
Adapting to Arachnoiditis

EMPOWERMENT THROUGH BEHAVIOR MODIFICATION Arachnoiditis often renders the survivor dependent on others for daily support and assistance. Still there are some things that Survivors can do to maintain some independence and personal power over the events of the day. Due to a lack of guidance and companionship during this difficult journey, I kept a journal of my days to document my fears, anger, pain, and hope. Inadvertently, it became a record of pain levels, triggers, and symptom progression. Over time I began to identify things that I needed to do differently.

(Please note,each case presents specific to the individual patient and the nerves affected. These details are specific to my own experience. What worked for me, may not work for the next patient.)

  1.    I learned to get horizontal every three hours even if I didn’t feel incapacitated at that specific moment. Arachnoiditis scarring has impaired the CSF rotation in my spine. This means that the fluid gets trapped in my lumbar spine and I do not have enough fluid around my brain. The resulting symptoms are similar to a spinal fluid leak. I keep a waterproof picnic blanket with me any time I am away from home. I put it on a bench, on the ground, push two chairs together, or even on an office floor in order to assure that I do not miss this important horizontal time. (It took some time to get used to doing this. It still feels conspicuous and I sometimes hesitate but, ultimately I know it is what I need to do.)
  2.    My neurosurgeon, who was unable to treat this condition, informed me that Gatorade helps to restore the fluids necessary to restore CSF levels. Although, at first I was somewhat offended in my defensive frame of mind, it eventually became obvious (through trial and error) that there was indeed some truth in what he had said. I don’t really like Gatorade, but, I do now keep it in stock for use on exceptionally “active” days. Because of the artificial nature of Gatorade, I am also looking into natural options. Some forms of coconut water that are now on the market indicate that they contain electrolytes with restorative properties. I am doing some trial replacements with those.
  3.    I learned not to waste my vertical time on waiting, hovering, or other unnecessary task just because it was the “social norm” to do so.
  4.    I plan ahead as often as possible. I try to be prepared for pain flares and unexpected needs. I confirm a place to lie down. I lay down for at least 15 minutes before I leave the house. For overnight trips, I bring my back brace and neck brace. (The back brace provides support during vertical activity.The neck brace is used at home 3 times a day to help with symptoms that have developed due to loss of the natural curvature of the cervical spine due to severe muscle spasms. When I am away from home, remembering to do this can often reduce the flares that might occur from doing extra/out-of-the-ordinary activities.) Extreme sensitivity to drops in temperature has taught me to bring a sweater with me in the summer months to compensate for air conditioning. In the winter, I bring at least one layer more of clothing than the people around me are wearing and a blanket. For me, cold temps cause tremors, muscle spasms, and pain in head, neck and all four extremities…often before I even know that the temperature has changed. People who know me understand that they should not be offended if I leave the building. It usually means that the sweater was NOT enough or I have reached my vertical limit.
  5.       Ask for help. I still struggle with this one. I have managed my own house, done my own maintenance, repairs, and lawn care as a single parent for over 20 years. I still try to use chores to stay active and remain mindful (a few more tips on this topic: Mindfulness and Chores) but, I am still learning to modify those chores. Big progress for me, I have accepted that I need help for any task involving a ladder. Because I cannot afford a car due to financial hardship of Arachnoiditis, I have to ask for transportation to most destinations. Scheduling this in advance works better than last minute trips/requests. I give gas money to the driver. For routine assistance remember to be prepared. Although it is necessary to feel comfortable telling your friends & family that you are in too much pain or too sick to follow through, stick to the schedule/plan as much as possible so that you are not inconveniencing your support network. Random and inconsistent changes to the schedule will make it difficult for them to provide the support you need.
  6.       Take a step back. I am still conditioning myself to stop trying to manage or control situations that do not pertain directly to my own personal health.
  7.       Minimize physically demanding tasks that show a pattern of triggering “flares” later.
  8.       Keep moving. Change position often. I try not to sit, stand, or lay down in one position for more than 30 minutes at a time. Because of arachnoiditis in the thoracic spine, when I wake up in the morning it is especially difficult to move my arms. I have learned to stretch slowly and carefully to get things moving again.
  9.       Know what makes you feel good. Self-care is essential to survival. Discover and record the things (big & small) that help you through difficult days or situations. What gives you strength? What shows you beauty? What makes you laugh? Where do you find grace in your day? Allow yourself to grieve. There are so many losses associated with permanent disability. The losses can be exponentially greater when the origin of your pain & disability is denied causing validation and supportive resources to be withheld. Laugh... often and loudly even if nobody is there to hear you.

VOCATIONAL REHABILITATION Many Arachnoiditis Survivors are deemed unemployable. I had to stop working because I was in too much full-body pain, had extreme sensitivity to sound, nausea, vomiting, parasthesia, dizziness, and loss of coordination & balance to continue teaching & caring for children. Later when these symptoms were better controlled, I could not re-enter the workforce because employers could not reasonably accommodate the continued need to lay down every three hours to compensate for Obstruction of CSF Rotation. With the assistance of Vocational Rehabilitation Services, I changed my career path.

  1.    Focus on the positive. I identified independent skills & abilities that could be done the “traditional” way. Then, I identified skills & abilities that could still be done with modifications. I opened my mind to the concept of developing NEW skills & abilities which fit into the boundaries of Arachnoiditis.
  2.    Some activities can improve outcomes. Art has always been my coping mechanism. Discouraged by the challenges and obstacles when I first tried to paint with these neurological complications, I developed a new project using an entirely different media & method to restore and redefine some of my fine motor skills. The Still Standing, paper sculpture & photography project is now available for display in pain management and rehabilitation clinics..
  3.    Willingness to learn new things was crucial to adaptability. When it became clear that I was unemployable, I attended the Entrepreneurial Assistance Program offered by the business division of the local community action agency. Although I did have to attend a percentage of these evening classes, they provided me with the option to do portions of the lessons from home. In the program, I created a business plan for a self-sustaining live/work art studio designed with reasonable accommodations for spinal adhesive arachnoiditis. Later, this business plan earned a small business start-up grant from Vocational Rehabilitation Services at ACCESS-VR.
  4.    Willingness to relocate was crucial to adjustment. Unemployable & no longer able to maintain or finance my three-story house, and losing benefits of pain management treatment during the ride home from the medical facility; I made the difficult decision to buy a much smaller, single-story home located closer to the Rehabilitation Services Facility. In choosing the property and location I made sure that it met the requirements appropriate to my studio business plan.
  5.    Ask for help. Although I was eligible for a VA home loan because of my prior military service, the lender did not view social security disability as a viable source of income. I had to obtain a regular bank loan to cover the cost of the house. I had to ask for a personal loan from a friend to cover the cost of the down payment. In spite of having a credit score well over 700 at that time, I also had to have a co-signer to purchase the property. Many years of working hard to maintain my finances responsibly made this insulting and extremely difficult to accept but, it was necessary to my forward movement.              

    Using the Ostrich Cot
    Working
  6.    Modify your surroundings. I learned that certain objects made life easier. The Ostrich Cot, a tanning/beach chaise, from the Ostrich Products Company allowed me to draw, research, write, and create other art work while lying on my stomach. I use an inversion table almost every day to maintain an appropriate CSF level. I keep a timer to remind me when I need to lay down. I maintain my studio websites from my laptop while I am in my bed. I applied for and received a weatherization grant to make my new house/studio warm enough to allow me to tolerate the winter in Upstate New York. In my studio there are four work stations which permit me to work from multiple positions to minimize neurological symptoms throughout the day. Visitors are welcome by appointment so that my vertical time can be used efficiently. Heating pads and telephones are strategically placed around the house/workspace. After several unexpected falls while working alone, I conceded to enroll in a medic alert program with a direct line to local emergency services.

COPING WITH THIS ADVERSE OUTCOME The journey of the Arachnoiditis Survivor undoubtedly includes an emotional rollercoaster ride for the survivor as well as friends and family members.  Services that were helpful for me included:

  1.       Grief counseling for the losses. Job, friends, co-workers, significant other, lifetime achievements & accomplishments that were now null and void, financial & personal independence were tremendous simultaneous losses. But, for me, the most devastating loss was the loss of my credibility. The people around me stopped believing what I was saying. I could see the pity and loss of respect for me in their faces. Without the acknowledgement and validation of a medical diagnosis over such a long period of time, they began to believe the allegations of supposed mental illness. In spite of three neuropsychological evaluations which ruled out ALL psychological origins for my symptoms, they were more inclined to believe that than the possibility that my doctors had knowingly injected a neurotoxin into my spine. Admitting that this could happen to me, undermines their own personal need to believe in the integrity of their doctors. Counseling helped me to come to terms with their perspective while reminding me that I was NOT the “deranged imbecile” that they suddenly seemed to perceive me to be.
  2.       Anger Management for the way I sometimes felt about these losses but more about the way I felt about the medical community at the time. In spite of my personal & professional achievements, for many months I was treated as an uneducated, needy, inconvenient, psychotic, hypochondriac, unworthy of the time it took to write my name on the page. This was partially due to the fear of litigation on the part of the responsible parties and lack of interest and/or information on the part of those who could have made a difference. My frustration at the resistance and obstacles the medical community kept putting in front of me as I tried to figure out what happened to me became a daily entity that I faced constantly. This anger did not subside when I found out the cause of my neurological symptoms and that it was a preventable entity that I should have been warned about. I worked through a lot of this anger with the counselor to help minimize how much of it my children had to hear. Eventually, I was able to turn this journey into a positive thing and began earnest efforts to increase awareness and prevention of Arachnoiditis.
  3.       Communication Skills about illness, loss, boundaries, adjustments, and defining my new role in the world around me.
  4.       Online Connection to the existing community of Survivors. The informative support and validation I received from members of Life With Arachnoiditis/Arachnoiditis USA kept the crippling isolation of undiagnosed arachnoiditis at bay.

MISSING PIECES In hindsight there are some additional services that would have helped reduce the grief and hardship of this adverse outcome.

  1.    Parenting as a single parent coping with sudden permanent disability, I could have used some additional support to permit continued involvement in the lives of my teen children. I was unable to attend many of the school events that are an irreplaceable part of this stage of development. My ability to provide advisement on academic & career oriented decisions was limited. Due to financial hardship all of my children had to work in the summer. They were unable to attend the available drivers’ education programs because of this scheduling conflict. Although my son already had his driver’s license and he was getting ready to leave for college the year that I became ill, I was unable to teach my daughters how to drive. My oldest daughter, now 22, is finally able to attend an adult education program similar to driver’s ed in order to work toward this goal.
  2.    Pet Care/Placement assistance would have eased many burdens. This is an area that I think is often ignored or forgotten even with transitional assistance for acknowledged permanent disabilities. The family pets that we had were strays acquired while I was a full-time teacher with more than enough financial and physical means to care for them in a loving and appropriate way. Our Golden Retriever, Lily, smart, well-behaved, and a lovely, gentle dog; was epileptic and required continued medical care to maintain this condition. The seizures were unpredictable and difficult to control. Although she was never mean, she would run into things and had to be prevented from harming herself. They often resulted in loss of bladder and/or bowel control. She had to be bathed and her living space had to be cleaned after each seizure. When it became evident that I was NOT going to get better any time soon, I tried for six months to place her (and our cats) in a loving home with quality care. Having no luck in this endeavor, and no longer physically able to manage my own body, I finally had to have her put to sleep. Our cat, Sophie, a tri-colored, long-haired, Maine Coon Cat, was killed in an attack by the neighbor’s Rottweiler as my daughters were leaving for school one morning. I was experiencing pain, parasthesia and loss of coordination. In spite of my best efforts, I was unable to save her. (Prior incidents with this same neighbor and same dog had been reported to dog control and town authorities. This dog was a rescued dog who was not being housed in an appropriately fenced care facility. I had frequently had to call the owner at work to let her know the dog was out again and tormenting elementary school children on their way to school. As my illness had no conclusive documentation I was not eligible for any support staff or in home aids. The lack of validation from the professional medical community caused friends and family to believe that I was mentally impaired and that I was over reacting when I had previously asked for help with the neighbor’s dog.) Continued problems with this dog (to the point that it would not permit my daughter to enter our yard on the way home from school one night and chased her until she had to jump a barbed-wire fence to get away to call me from a neighbors house) finally resulted in my informing the owner that I would personally shoot this dog if it came on my property again. Although there were no raised voices, and she was very understanding and apologetic over my concerns, the adrenaline released during this confrontation left my neck, arms, and back in spasms. I was sweating and trying not to fall down the entire time I was talking to her.
  3.    TIMELY DIAGNOSIS would have made many beneficial services available to me when I really needed them.

MY JOURNEY INTO ADHESIVE ARACHNOIDITIS ~ KIMBERLY COMFORT

 

Digital Collage
Digital Collage

Kimberly is the next Arachnoiditis Survivor Portrait Project recipient.  Fighting and surviving medical harm and back pain her entire adult life, she shares her story with us to increase awareness and prevention efforts.

“Okay, I wish it was a short story, but it is not.

 

At age 13, I started on the first day of school with severe hip pain,.  My Mom picked me up and we went to the military clinic. They took about ten X-rays and said nothing was wrong. We went back every day for about a week. Then we gave up and went on to Andrews AFB, where they said it was in my head from moving to a new school. I was told I was fat and needed to exercise a lot.

 

We then switched to Bethesda Naval Hospital and, still for three more months, multiple X-rays and all types of daily PT including electro acupuncture, biofeedback and self-hypnosis.  They still found nothing wrong.

 

 At the fifth month my Dad was being dropped off at the top of the street and saw me three blocks away crying, sitting on a protector on the road for cars. He came down to me. I lived a football field away from school, and I was still three blocks from home.  It had taken me two hours to get that far. At that point, Dad knew there could be no fooling around, waiting for answers. He contacted an old neighbor from the last state we lived in,  who was a pathologist.  That neighbor provided a referral to the DuPont Institute for Adolescent Orthopedics. That lit a fire under Bethesda Naval Hospital. They didn’t want to let me out of the military system, so they agreed to put me in the hospital the next week for a thorough checkout. I was now 14 and it had been six months of wrong diagnoses. 

 

Within three days after multiple tests, they performed a myelogram. The myelogram showed a large ruptured disc at L3-L4. The doctor came in and told me they would put me on the surgery schedule and that she was headed off to a meeting. About a half hour later, I was being rushed to emergency surgery with a central rupture at L4-L5 cutting into the leg nerve clumps. Whatever they hit during the surgery made me jump a foot off the table.  I was then non-stop screaming until they got an IV hooked into me and got pain meds on board. They say the surgery was packed because they were expecting a large tumor. Once they realized it was just discs, they all left. They wouldn’t fuse because they felt I was still growing.


I had a re-herniation 8 months later. In 1981 at age 16, I was fused from L3-L5 with iliac crest.

 

In 1983, I had a bulging and frank herniation of nucleus pulpous.

 

In 1991, my back started “clunking” with every step.  I had to have a psoas muscle release to prove that it was my back that was making the noise and not an overly taut psoas muscle. From that point on, I have had to lift my leg into the car as the released psoas muscle was now too long. And the clunking continued.  In November 1991, I had an epidural steroid injection (ESI), which didn’t help at all. Also in this time period I had facet joint injections which also failed to reduce my pain. 

 

By the time my Dad retired from his first career as an Air Force officer in 1986, I had a 2+ inch thick stack of X-rays.  For every good X-ray, they took 3 bad ones. By the time I was 16, I was warned if I ever had a child I would need genetic testing and 9 months in bed. So, by that time I knew I would not have a child.  In December 1991, I had L2-L3 fusion continuation along with disc removal by the head of Georgetown University Orthopedic Clinic, Sam Wiesel, MD. As he rarely did, he jointly performed the surgery with a renowned neurosurgeon, Dr. Arthur Kobrine, who operated on President Reagan’s Press Secretary, James Brady, after the assassination attempt. When Dr. Kobrine saw me, he said my spinal cord was too small for my body (not the only part I have been told is too small- very weird) and that it was severely tethered.


The surgery they did together kept me in okay condition until 2010. I survived on Darvocet N-100, taking 2-5 daily.  I saw that Darvocet as my lifeline.  Who knew how much more I could and would endure.


Starting in 2006, after being the family’s caretaker for an 84 year-old (my father’s mother), an 85 year-old (my mother’s father), a 94 year-old (my mother’s aunt) and a 96-year old (my mother’s mother), I decided to get as healthy as I could for me.  I knew I would never meet anyone and get married. I knew my next role in life was to be the caretaker of my parents, now in their low 70’s. To get fit, the whole family walked to the beach and back every morning around 10 am.  Then I came home and did Wii EA Active and Wii Dancing for 2 more hours. I did this regimen 7 days a week. No, my back wasn’t a fan, but I was determined to be fit.

 

I knew from experience that losing weight by exercising increased pain.  My family PCP couldn’t get that. He had the message that the less weight you carry around, the less pain you were in. For me, it was the opposite, since I was losing weight by exercising more.  To counter the increased pain, I increased my pain pills, Darvocet, daily by 1-2 more.  My PCP wanted me to go to PT to see if we could drop the pain meds back by one.
I went to the intake appointment, walking the stairs, climbing slants, doing squats.  At the end of the session, he had me try one exercise he wanted to start me on. I did the rep and left. By the time I reached the car, I told my Dad I was in the most severe pain I had ever been in. I immediately took two Balacet, and Dad drove home. Upon arriving home, 45 min later, I took two 10/325 Percocet and 10mg Valium. Nothing was touching this pain, although I continued taking Percocet and Valium every 3-4 hours. Like an idiot, I went back to this PT the next day, having had no sleep.  I told him that the exercise he had me perform had caused, and was still causing, great pain. Nonetheless, he had me do 25 minutes of exercise. The last exercise was to be sitting on the exercise ball (something I often used as a seat when company came over and we were short on seating), sliding a foot out and then back in.  Now I was in tears both physically and emotionally as I couldn’t balance.  He had to hold me, and I couldn’t budge my legs.  I left again.

 

The next day I had an emergency appointment with my PCP because I could not budge either leg standing up. I could only walk in an ape position of bent knees, leaning forward. This was now September 16, 2010.  My doctor increased my meds to a Fentanyl patch along with Percocet and Valium. Still little help, but I slept in spurts.  My PCP also said to take a week off then get back to walking.
After the week off, I returned to my normal 2-mile walk.  But, now I could only walk in my gorilla position. Toward the end of the week, my father left me with my mother at a bench and ran home for the wheelchair.  From about 26 October, I walked until I fell back into the wheel chair.  I continued doing this for shorter and shorter distances until mid December.  In mid-December, I went to Orlando to see an orthopedic surgeon my Mom had seen. He performed an X-ray, informing me that I had flat back syndrome.  As a result, he stated that I certainly had pain and always would. He sent me for MRIs the next day. That Friday I saw him again. My back was so bad I got trapped in the lady’s room at his office as the door was too heavy for me to move.  He sent me for a “warm and form” brace for my lower back.  He then arranged for another orthopedic surgeon in his practice, specializing in physiatry, to do an ESI on me that day. This physician had previously done three shots to my Mom in a hospital setting, so that is what I was expecting.  At the time, I knew nothing of the controversy of ESIs. 

 

When I showed up at his office (on a Friday), I realized it was now a cash factory. I was told to put a gown on. As opposed to Mom, who had twilight in a hospital setting with an anesthesiologist, he just started in. He numbed the skin, and stuck in the needle. I jumped a good six inches up from the table. He yelled at me to be still as he is close to my spine. I was biting the pillow in pain with tears soaking the pillow. When he was done, he left as did the nurse who told me to see myself out. I struggled to crawl to the door, where I budged the door open and cried out for my Dad for help. He dragged me to the car. 

 

When we arrived home, Dad had to get the wheelchair as I could not walk at all.
By Monday, I was unable to void. Dad sent a fax boldly marked “Urgent” early Monday morning to the Orlando doctors – which went ignored. By late afternoon, Dad put me in the car, and Mom drove us all to the emergency department at Mayo Clinic Hospital in Jacksonville.


Mayo performed an MRI in the ED to rule out cauda equina syndrome. They said the fact I could stand and shuffle my feet bent over confirmed that I didn’t have CES.  They apparently could care less that I could barely shuffle my feet, leaning forward with bent knees. They were sending me home. It wasn’t until Dad kept insisting I could not void that they scanned my bladder. Then they cathed me, and they admitted me. They sent me home on day three, with a Foley cath bag attached to my leg, and with no diagnosis. This was Christmas week, and they appeared anxious to clear out inpatients. 

 

I followed up at Mayo with neurology and urology clinic appointments.  Dad sent the neurologist a detailed paper explaining my experience in preparation for my appointment. When we got to the appointment, it quickly became clear that this neurologist had decided that my pain and inability to walk or void was in my head – the result of my use of Darvocet for many years, and now of Percocet.  He conducted a brief examination. Then he had me walk down the hall.  By this time, I could walk about ten feet, bent over facing the ground.  He decided he could shock it out of me. He grabbed my hand and took off at a full pace.   Within the first stride, I was tripping onto the floor being dragged five feet by the doctor.

 

He then said for me to come in for a walking EMG the next day. He never had me walk, he just had me stand.  It seemed that he was more interested in showing off his equipment to a colleague than he was in thoroughly examining me.  When the appointment finished, I told the doctor that I’d see him in a day or two. He did not answer. I left and started crying.  My Dad said I was being foolish when I told him that the neurologist was dumping me. It turned out I was right.   He had arranged for me to see a psychologist that afternoon.  He had given to the psychologist the task of informing me that my entire condition – inability to walk, severe pain, inability to void –  was due to my years of daily Darvocet.

 

They wanted me to go to Mayo Clinic at Rochester, MN, to an outpatient pain rehab clinic. This concept made absolutely no sense to me.  Upon arrival, they would take away all opioids.  During the day, they would have me in their pain rehab clinic.  But, at night, where my experience informed me that my pain would be at its worst, I would be left to the care of my parents in our hotel room.  I envisioned that I would walk in front of a bus in such a setting.


In Daytona Beach, despite visits to a multitude of doctors, I found no one who was interested in pursuing a diagnosis.  Instead, I found only a multitude of specialists who would tell me “Good news.  I don’t see anything wrong.  Good luck.”  My PCP remained empathetic, and, thankfully, he continued to prescribe sufficient opioids that I could continue to exist, although at night, I was often crying out in pain.

 

 I only had my Dad for research. Luckily his second career was as an analyst. He spent every day trying to get help from the internet. His research suggested that I might be suffering from a peripheral pain condition, perhaps piriformis syndrome.  He spent $90,000+ to bring me to California to be seen by a neurosurgeon specializing in piriformis syndrome.  He performed a bilateral Piriformis resection at Cedars-Sinai Medical Center. The piriformis muscle was resection, the piriformis nerve was cut, and the piriformis muscle was left to wither in my body. After three months recovery in CA, I left in worse condition than when I arrived. I was back to total wheelchair. At my last check up, my Dad asked this doctor if I might be suffering from adhesive arachnoiditis. The neurosurgeon went into his office to re-examine my MRI.   He then told my Dad that there were signs of unusual clumping of nerves, but that would indeed be a bad [unfavorable] diagnosis.


Near the end of the CA recovery, on the web, my Dad found a spinal specialist at the Steadman Clinic in CO, where major athletes go to for treatment. Dad asked him about the possibility of adhesive arachnoiditis.  This orthopedic surgeon said he could suggest 40 other diagnoses before he would consider adhesive arachnoiditis.   This doctor seemed truly interested.  He exchanged several e-mails with my Dad, inviting us to see him in CO.


I went to see him at the Steadman Clinic in Vail, CO.  After his PA spent about 1.5 hours thoroughly working me up, the doctor then spent about 45 minutes with me. He had me undergo a couple of MRIs using Steadman’s 3T MRI machine.  He then showed us that rather than the normal lumbar lordosis, my spine had developed a lumbar kyphosis, i.e., my lumbar spine had developed wrong curvature as a consequence of my early fusions and flat back syndrome. He proposed a very major surgery, a so-called pedicle subtraction osteotomy. I had to undergo psych counseling and testing to get the surgery.  In this surgery, the surgeon cut out a wedge from L4,  pulled my spine back like a rack of lamb. My spine was then held in this position by curved titanium rods secured by screws into the L2, L3, L5, and S1 vertebrae.  You can view a pedicle subtraction osteotomy surgery on YouTube.


After surgery, I thought he had fixed me.   After the surgery, I was discharged to two weeks therapy at an inpatient rehabilitation hospital in Aurora, CO, where I started walking better.


Upon return to our home in FL, I attempted to continue therapy with a PT.  However, the PT did not appear to follow the doctor’s prescription of going very slowly. The first PT tore both hip labrums by performing an aggressive “piriformis stretch,” despite having been informed that I did not have a functioning piriformis muscle.  Subsequently, a leading hip surgeon has told me that he would not attempt labrum repair surgery because I can barely walk anyways. A second PT said I could be healed with only five exercises, as they heal everyone, which made me think he was crazy.

 

I returned to CO and the Steadman Clinic for PT. I was there from June until September 2013.  When I left, I walked with a cane, 30 minutes twice a day, and I did 30 min PT twice a day. I was supposed to continue in FL, very slowly, and use the Pilates reformer more and more. Between mid September and November, my condition slid all the way back down, plus my thoracic and cervical pain greatly increased.

 

In May 2014, I again returned to CO to see my spine surgeon. After a CT scan, he told me that he saw nothing to correct surgically.  He set me up for trials for a spinal cord stimulator. I saw a world-recognized SCS specialist, Dr. Barolat. After viewing the CT scan, he walked in and said that there was no way a SCS would help my lumbar pain, but he thought a peripheral nerve stimulator (PNS) could help my thoracic and lumbar pain. He did the PNS trial.   He had me stop PT with my CO therapist while I underwent the trial. At the end of the trial my pain meds were less, suggesting that the PNS was helping, but only in the thoracic part of the spine. It didn’t touch the pain in the lumbarsacral area where most of my pain was, so he ordered a trial of a lumbar SCS conducted by a local anesthesiologist. That doctor emplaced the lumbar SCS trial on Friday. It was supposed to be a 5-7 day trial. But they so overset the SCS intensity in the recovery room that I had to keep the SCS turned off until Monday afternoon when I could see the SCS tech again.  Then, on Wednesday they removed it – effectively a two day trial.  Once again it seemed like my pain pill use diminished during this trial, but once again I recognize in retrospect that for this SCS trial I had again stopped PT.


In any case, I had a combination SCS/PNS installed by Dr. Barolat on 9 September 2013. After recovery from the surgery and my one-month follow-up appointment, I returned to FL.  The SCS/PNS was not helping my pain.  I met with the SCS manufacturer techs a couple more times while they attempted to better tune it.  Eventually, I had to accept that it wasn’t helping.  In retrospect, the apparent decrease in pain during the trials was due to my stopping PT and not an effect of the SCS/PNS. I permanently turned off the SCS/PNS in early January 2015.


The final weekend of January 2015, I flew to California with my Dad to see a recognized specialist in the care of intractable pain patients, Forest Tennant, MD.  He very quickly concluded I had adhesive arachnoiditis based upon my history and my symptoms. He saw me for about 20 hours over the four day weekend. He put me on hormones as I tested to have lost most key hormones from the adrenal gland working overtime. He normally tries to reduce opioid medication on intractable pain patients, but with how bad my case was, he added liquid morphine sulfate to my OxyContin and 10/325 Percocet regimen. He told me to take as needed to stay ahead of the pain. He also did a few genetic tests. When I was back in FL, he sent a letter to me and to my PCP explaining to be prepared to put me on injectable pain medication as the tests show that I am a rapid metabolizer, up to 200% too fast. Also he told us to avoid anti-depressants, as I am a slow metabolizer, up to 200% slower.  Dr. Tennant provided a written report to my PCP citing my diagnosis as “Intractable, centralized pain secondary to severe arachnoiditis complicated by bowel and bladder dysfunction.”


In March 2015, Dr. J. Antonio Aldrete of the Arachnoiditis Foundation reviewed my history, my symptoms, and my most recent MRIs. He did not see arachnoiditis in my 2008 lumbar MRI, but in both the 2010 and 2011 MRIs, he sees arachnoiditis in several locations.  He provided a detailed written report for my PCP and us, citing adhesive arachnoiditis as the primary diagnosis.

 

I then again contacted my Steadman clinic ortho surgeon.  I provided to him Dr. Aldrete’s detailed report wherein he reviews my Nov 2011 MRI on a frame by frame basis, finding adhesive arachnoiditis.  I don’t know if the Steadman surgeon went through Dr. Aldrete’s report or the MRI in a similar frame-by-frame basis.  All I know is that he continues to tell me that he does not see arachnoiditis in that MRI.  It’s enough to drive one to drink – if I weren’t on opioids. 

 

I can’t sit, I have had to reduce my walking from 30 min once a day down to 18 minutes, and still the pain is getting worse. I spend 23+ hours lying down. I can dress myself.  I can only walk with a four-wheeled walker (aka as a rollator) as I have severely damaged balance. I have stomach issues due to narcotic bowel. This is my entire life. There is no quality. Currently, my father is donating all the equipment for all of my activities I used to do, stained glass, sewing and scrap booking and more. I have bought way to much yarn hoping I might be able to knit or crochet. I hate my quality of life.

 

I am however trying to follow a French doctor’s protocol which lasts three years. She has conducted research into treating radiation-induced breast fibrosis.  She has conducted some peer-reviewed studies showing a significant reduction in breast scar tissue by following a protocol of pentoxifyline in combination with Vitamin E.  In addition, she has authored a case-study of a severely incapacitated, bedridden man due to epidural fibrosis.   Following a couple of years of the pentoxifyline/Vitamin E protocol, his symptoms went away and the fibrosis was shrunk.   Dad met a young woman’s mother online who had adhesive arachnoiditis. The only relief she got was in a pool. After three years on the protocol, she has improved enough to return to college.  The French doctor has written to us.  She is concerned that the protocol may not help me since my original scar tissue goes back many years.  But, my current debilitating condition only goes back to 2010, so I still have some hope for the protocol. I have promised to do the full three years of the protocol, and I am only seven months into it.

 

Beyond that, I don’t offer any promises.

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.)

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

TILT! Ten Tools For Coping

Tilt!
Tilt!

TILT: In pinball,  “The tilt mechanism registers motion applied to a machine; if too much motion is applied this way, the game is said to “tilt” and the player is penalized (losing the ball in play, the bonus points or a combination of both are the most common penalties). Some EM machines void the game of a player when tilted.” ~Glossary of Pinball terms

I am pretty sure we all have days that “TILT” us. Here are a few tips to help make sure that you aren’t out of the game. These ideas come from the knowledge that pain is a daily factory.

1) Wake up  ~ Yep. That one is important. It isn’t always the pleasant feeling we’d like it to be. I have had mornings (and nights) in which all I can think is, “Really? I am awake AGAIN?”  It took a long time for me to accept that it is OKAY to be awake even when “normal” people would be asleep. Although I know I NEED sleep, I have come to recognize that the more frustrated I get about NOT sleeping, the less likely I am to actually sleep. The lure of the escape of sleep is also something to wish for and pray for when coping with chronic pain…especially, at the extreme levels associated with arachnoiditis. But, believe it or not, accepting your wakefulness eliminates the stress (and related pain) that comes with fighting it. The Price of Pain is that we question the value of being awake in ways we may never have done before. Each day we are given is a blessing. Sometimes, the blessings are VERY HARD to find but, they REALLY are there. Wake up so you don’t miss them.

2) Love ~ Love yourself, your life, the world as often as you can. Your pain is NOT punishment. You deserve to wake up and tell yourself, “I Love You.”  Out loud, in the mirror or laying in bed with a gentle acceptance of all of the aching parts of yourself and for the strength in the parts of you that are working daily to compensate for that; say it, “I Love You for all that you tolerate, for all that you are, and for all that you will be.” Say the words you wish you could hear from others. Give this gift to yourself. You deserve it.  Find out more about ways to give yourself this gift.

3) Gratitude~ CONSTANT PAIN can make it difficult to come up with this one. If you start with just ONE thing, big or small, it will eventually lead to others.This doesn’t mean you stand up and yell, “Oh Thank You So Much for ___-!” This is a subtle, quiet, gently thing. [Unless of course, you feel so inspired that you must stand up and yell. In which case, by all means go ahead and do so.] Even if your whisper of gratitude is about the exact same thing every day, recognition of that blessing is important to your quality of life. In a notebook, or just in your head- if getting pen and paper hurts too much- be thankful for something in your day. From my journal: “At least I didn’t throw up on anyone today. Nearly, but I didn’t. That was good…I smell honeysuckle out in the yard. That’s nice….The paisley print here looks like little ameobas moving through a blue mist. I am glad we got this comforter. It’s soft and warm and doesn’t slide off the way the other one did.” There is no judgement in this gesture of gratitude. The things you are thankful for now, may be extremely different than the things others would mention.

4) Know Your Power~ Even in the midst of excruciating pain, WE get to decide the shape of our own day.

Know yourself. It took some training, and I still forget sometimes but, in the worst moments it always helps me to ask myself, “What can I do right now that is good for me?”  “What can I control in this moment?” “Is there any beauty here that I can focus on instead of _____?”  “What do I NEED right now?”  Know that you CAN ask. Ask for help when you need it. This can be tough when I feel like my pain and situation will NEVER allow me to be able to repay the “favors” given. I am an independent person by nature and asking is always a challenge. I HATE it when I cannot just do something myself. I have come to recognize that I am stronger when I let go of the hate for the necessity of it and ask for help so that I have the ability to do the things that I CAN do instead of killing myself to try to do the things I can’t or shouldn’t.

just ask
just ask

Know that you can set boundaries and expectations for the people around you. I had a list for my family of the chores and tasks that I just needed them to take over. It just took too much out of the quality of my day to continue to try to do these things. I posted it near the kitchen sink and we talked about it. I had to let go and trust that even if they didn’t do it “my” way; at least it was getting done. (In case you’re wondering, I suck at this and it was NOT an easy transition for anyone. We still struggle with it when they come home from their assorted young adult adventures. But, it did, eventually, make a big difference in the quality of my life with Arachnoiditis.) Doing this also gives them the power to help you when they really don’t know what to do. It eases some of their own sense of helplessness in a difficult situation. There are different degrees to which each family member is able to assist in this way. Age appropriate chores are a good place to start and can help strengthen Family Focus.

5) Simplify~ As important when living alone as it is when living with others. De-clutter your environment, your expectations, and your obligations by asking, “Do I/We really need this? Want this? Use this? ~what purpose does it serve?”  These are thoughts and issues which I addressed when I forced to be horizontal. I make a LOT of lists when I am laying down. Some get implemented, some get thrown out. However, all of them distract me from pain,frustration,boredom, and idleness DURING the laying down part. There are many searchable resources online for this. Since I already owned it, I went back to, Simplify Your Life with Kids by Elaine St.James. It is a great resource for identifying some of these areas that may be affecting your life. I excluded and/or delegated some of the more physical tasks described in her book.  Have one place in your home that is not full of information, obligations, or life debris. Allow others to join you there as you see fit but, be sure it is understood that THIS is your simple sanctuary. It is a place to heal and pay attention to what your body and mind need RIGHT NOW.

6) Know Your Pain Management Resources and Health Options 

  • Adaptive Devices & Modalities
  • Holistic Healing Practices
  • Experimental Treatments
  • Alternative Medicine
  • Research & Discovery
  • Behavior Modifications
  • Spirituality and Healing
    • Healing Art Activities
    • Opportunities for Social Connection

7) Go Gently ~ “When it comes to committing to a daily practice: no matter how long (a week, a month, a year, or forever) we are going to be confronted with all manner of negative thoughts that interfere with our intention….Yes, we can show up and face the blank page, without being mean to ourselves.” ~Lisa Sonora on Creative Practice. The same is true of daily practice for Coping with Arachnoiditis or any chronic illness or pain condition. Approach new plans and new habits with gentleness for yourself, those around you, and your environment. It’s about meaningful moments not forcing fabulous-ness.

8) Adapt ~ Lovingly  Acknowledge Your Limits Today so that you might expand them tomorrow. Recognize the ways in which you can alter your environment to suit those limits. Discovering adaptive furniture/devices, Changing how often/how long you stay in one position, moving differently, storing things you use most in easily accessible locations, etc. The little things can make a big difference. When Change Chooses Us, it’s BIG.  But, little adaptations afterward that may seem so simple and obvious you don’t know why you didn’t think of it sooner can smooth the path for bigger goals. (I.e.I have a dog. I love him. I HATE mopping/cleaning my floors because of the way that it triggers all of the ick in my body when I do it. What I HATE more than mopping~ Dirty Floors. To minimize the effort involved, my dog now has his own set of small towels strategically placed by the back door with a hook to hang the current one on. His feet are wiped every time he comes in the house. Pets will adapt, too if we show them how. Pets can also HELP us adapt. Their are many known Health Benefits to Pet owner ship but, it is a physically demanding responsibility and long term commitment. Be sure you know all the facts before seeking a NEW pet.)

9) Celebrate Your Achievements~ Set Goals “Start where you are and with what you see.”~Ghandi  ONE of the most devastating discoveries for me after Ararachnoiditis was realizing that in my injured state, it was extremely painful and complicated to paint or make art of any kind. Through all of my life’s changing rhythms, anytime I was hurt, angry, frustrated, confused, disillusioned, or lost~ two things had remained constant; the ability to make art and the ability to walk it off. It seemed I no longer had either of those when I needed them the most. As a consequence, my goals shrank and became more immediate.Journal entry: “Today, I crawled to the toilet by myself.It only took 27 minutes to get back to the bed.” The day before I had been there 45 minutes before I dared to try to get back to the bed that was approximately 15 feet away from the bathroom. Although I was painfully aware of what was lost, the ability to see this difference as an accomplishment instead of allowing myself to focus on all that I had done before but couldn’t do right now was truly a blessing that gradually transformed into discovering new ways to do the things that I wanted/needed to do. My reward for this achievement~ I was able to pee in private.

Later,  I would reward myself with things like a slumber party night with my teen daughters (they would come in and lay on my bed with me and we’d watch an episode of Friends, play line-drawing and doodling games, or if I was feeling particularly competent we would play Scrabble…sometimes, they would just tell me about the way they spent their day), or ~as advised by another Survivor~ I’d get some pretty pajamas because being in bed most of the time, these were more comfortable than regular clothes but, made me feel like less of a sick invalid.Eventually, I had day pajamas and night pajamas and threw away ALL comfy clothes that had any stains or holes as these made me feel worse about my situation. {Read as:  I asked the kids to bring me a trash bag for my room. Each time I changed my clothes, if I reached for the old-faithful sick-day clothes; they immediately went into the trash bag. When I was able to manage the stairs myself, this bag went down ahead of me and eventually made it to the dump in the next trash run.}

10) Have a plan for the next TILT!~ To cope with the two steps forward and three steps back phenomenon Remember you will REGRESS. There will always be good days and bad days. Life is like that. Wander Land cards are good way to plan for those regression days. Don’t be afraid to ask for help on these days. Make sure the people you trust who are close to you know that this might happen. If you don’t trust anyone in your immediate circle not to judge you harshly, reach out to one of the many support networks available on social media, call your local hospital, patient advocate, or counseling program to find out if there is a real time chronic pain support group near you. There is a fine line between the benefits of solitude and the crippling effects of isolation. Know where you are on that line so that you can be prepared the next time you TILT!

BONUS TIP: Any day is a good day to Make Art, Look At Art, Listen to Art, and Appreciate Art.

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