Thoughts on a life with Chiari Malformation

Year Two (I'm still here!)

2012-01-31T11:55:00.003-05:00

Almost 2 years and 2 months since decompression surgery....

Sometimes silence is a good thing. I have not written a post in a long time.

I've learned to be calm and more peaceful, to stop and enjoy the pain free moments, to express gratitude to people who make my life better, and to set boundaries for those who are negative or abusive. It's gotten to the point that I pull over and let angry drivers go past me in order to avoid taking in any of their emotions. This week, negative comments on a Chiari facebook page hurt me and I felt agitated. More on that in a future post!

I've learned that this life with Chiari is much harder than I realized. Each time I thought of writing a new post, I was in a low place and in pain and I did not want to discourage those who read this.

Continuing to wait for a better time to write is silly. This is the time. It's the only type of life I get. Each day I ask myself how I am going to enjoy it.

Life

Today I am grateful for life.

Determination

2011-08-18T10:41:00.000-04:00

This is my preplanning week and I am trying not to overtax myself as I readjust to a teaching schedule. This summer I woke up every day by 6:45 am, gardened, sang with three groups, took voice lessons and ran 20+ miles each week. Considering I kept up a teaching type pace, I secretly wished I would glide smoothly back into a work schedule.

Yesterday I made the mistake of driving too long without my neck support and I got a killer Chiari attack. When it backed down I was determined to join in with the Oakhurst Running Club's weekly 5 mile run. I love the energy that comes from running through the streets of Decatur with people who love running as much as I do. Plus there is a runner who bakes amazing desserts for after the run. Last night we were treated to peanut butter cookie sandwiches.

The run took a great deal of concentration and the temperature was 95. Thankfully the humidity was down in the 40% range. We ran the 5.13 miles in 47:58 which was our pb. My legs felt terrific. While stretching, the pain in my head and neck suddenly became crushing to the point of tears. Speech was difficult and walking sent fresh waves of hot and fiery bone crushing tools into my neck.

This morning I am on my way back up and taking it easy.

Determination. Why do I run? Should I run? I'll never know the scientific answer, but I continue to answer from my spirit. I run because I still can. Choose to live a life with pain and suffer or choose to live. I pick the joyful path.

Chiarirunners is up to 13 members. Life is good.

Writing power

2011-07-03T18:50:00.000-04:00

The interview I did for WSB Channel 2 news was shown this week. Although most of it was not used, I think important points came through. Don McClellan used a part of my explanation of what Chiari is and included the comment where I say that I run to inspire those who can't. Monica Kaufman, the news anchor, over does the wheel chair bit and makes it sound as if I will rise from a chair to run the race tomorrow. The reality is that walking became so painful, my vertigo so strong and my dizzyness so disorienting that I used a wheel chair while teaching and going long distances and a cane the rest of the time.

Here is the link to the interview. AJC Peachtree Road Race

I'll write another entry after the race to let you know how it went.

Angels

2011-05-28T13:50:00.000-04:00

Aimee Z. has been compiling a list of people with Chiari who have died. It's a sad thing to keep track of, and yet so important for the memory of the people and to remind everyone to please help us find a cure.

Fallen Angels

Chiarirunners

2011-05-26T08:18:00.005-04:00

Graphic art by Jason Cummings

We now have a facebook and web page called Chiarirunners.org We hope to encourage and inform.

Many people with Chiari struggle with mobility and walking can be very painful. I remember well meaning doctors and nurses would watch me struggle down the hallway with my cane and ask "why do you use a cane?" A question that made sense as I had no visible sign of disability. It always left me feeling sad, as I expected those in the medical field who understood my brain condition should have known why I used the cane. The solution was to label me a fall risk. They put a "cute" sign on my hospital door that said Falling Star complete with an array of stars soaring across the paper.

Explaining this is important to understanding my joy with recent events. My three member running team entitled Chiarirunners was selected in the Peachtree Road Race 10K run to get numbers. Nelson Burke and Millard Davis don't have Chiari, but they have run half marathons with me and support THIS runner with Chiari! 55.000 people run, but getting a spot has become difficult.

The email informing us of our success also asked for race stories. I sent my running story to the Atlanta Track club and quickly received an encouraging response. Don McClellan from WSB tv in Atlanta emailed and then called to set up an interview. Today at 11 I will be interviewed for a news story that will air in the week prior to the race on July 4th. No matter what happens with this, it has already encouraged many of my Chiari facebook friends who are in desperate need of good news. Last week two more Chiarians died and in recent weeks many friends have suffered heart attacks, seizures, shunt complications, massive pain and increased symptoms from Chiari.

Well meaning people no longer have to ask me why I use a cane as I rarely have to use it. Now I get the question, "Why do you run?"

I run because I can and most people with Chiari can't. I am hoping that when they see me run, they feel hope. This is a lifelong illness we never get to recover from or finish. It forces you to rethink- Where is the finish line?

The Mystery of Pain

2011-05-26T07:17:00.000-04:00

This came to me via Rachel Altmann. It's not about Chiari specifically, but talks about how chronic pain can become it's own disease.

The Mystery of Pain

Conquer Chiari

2011-05-24T10:22:00.001-04:00

Conquer Chiari sponsors walks in many states every September. For the first time ever we have not one, but two in Georgia. You can help us by walking or pledging. I have a friend from Oregon who is planning to participate in a walk near her. Thank you, Rachel!

Here is a link to my team.

Chiarirunners
https://www.conquerchiari.org/ccwaa11/MirandaDillard

Thank you Engineer Guy for becoming a corporate sponsor of the walk in Winder, Georgia! Look for his logo on the t-shirt.

Erosion: Haiku Therapy

2011-04-28T07:11:00.000-04:00

#3 is especially resonant for me

Storms blow in again

Pain erodes my sense of self

More than I can bear

After posting this as my facebook status, a wise friend made a comment about my use of Haiku therapy. We use whatever means necessary to manage chronic pain.

A running story

2011-04-21T14:41:00.000-04:00

Here in Atlanta, the Peachtree 10K road race is so popular, you have to enter a lottery to get a chance to run alongside 50,000- 60,000 people. I entered the lottery with two running partners as the Chiari runners team, in order to bring awareness to Chiari and to help inspire those who are not functioning as well as I am.

When I got the email verifying my team had spots to run this 4th of July, I noticed that the Atlanta Track Club was asking for race stories. This is the letter I sent and the response I got.

I am part of a 3 member team running in the Peachtree Road Race. We are running to bring awareness to a brain condition I have called Chiari Malformation. I am a 45 year old woman, mother, teacher, runner and survivor. A simple explanation of this condition is that there is not enough room in your skull for your brain which causes your cerebellum to press on your brain stem/spinal cord. For me, it meant that 2 years ago I was using a wheelchair and a cane to teach my classes and get around. After brain surgery in December 2009, my symptoms greatly improved. Four months after surgery, my running partner and I ran our first race. We ran the Sweetwater 420 5K with a goal for me to simply finish. Since then, running has become part of my recovery process and we have done three half marathons, two 10K races and five 5k and 4 mile races, all in the past 16 months since my Chiari Malformation brain surgery at Emory Hospital. We are looking forward to adding the Peachtree Road race to our list. There is no cure for this brain condition, which affects 300,000 people, leaving many in horrible pain and reduced mobility. I run to give hope to those with Chiari who are not doing as well as I am.

Miranda,

Thank you for sharing your Peachtree story with us. While I’m sorry for all that you’ve had to go through over the past few years, I’m so happy to hear that you are back to running and that you’ve added Peachtree to your race schedule. As we get closer to Peachtree, I often get requests from the media to share stories about Peachtree participants. Please let me know if you would be comfortable with me passing along your story (and if you’re not, it’s absolutely no problem). Thanks again for sharing your story with us. You are truly an inspiration for everyone out there having to overcome an obstacle. Best wishes to you, and we’ll see you and the rest of your team on the Fourth of July!

Tracy

Mindfulness

2011-04-01T21:52:00.000-04:00

I was drawn to this book after finding a wonderful sense of calm and joy when I read quotes by the Zen Master Thich Nhat Hanh. Ironically I did not choose the book for it's title, even though I am going through a divorce. I was drawn to the items in the table of contents and it's promise to address pain.

If we are a product of our ancestors, I believe I have a person of great strength and practicer of Buddhism in my past. As I read this book I found many of the things I say and do to manage a life with Chiari are in sync with Buddhist practices. I'm now reading another of his books about mindful eating called Savor.

Can you remember the last time you noticed and enjoyed the smell, texture, taste and experience of a meal? Radishes are calling to me........

i wake to light and smile

2011-03-22T12:51:00.000-04:00

By Mamie Brimmer a fellow Chiarian (posted with permission)

i wake to light and smile.
until i move.
and realize the light is a pain flash inside my head.
my skull. my brain. my life.
it is the reminder that i now carry a burden. inside my head
along with my thoughts and hopes and dreams and prayers.
there is pain.
and too many days i lose the power inside to rise up and take the day as mine.
too often i curl into a ball and weep, cry, bawl.
because i know i will get up and take the day.
with a false face.
the one i wear so often.
to keep the world believing.
and i smile. laugh. love.
until i can once again lay in bed.
fall asleep after hours of fighting the pain.
to awake to light and smile.
until i move.

13.1

2011-03-21T15:01:00.002-04:00

On Sunday I ran my third half marathon. Sometimes I get well meaning comments about whether I should run "in my condition." When I am struggling, it is often suggested that I give it up. I may never know if running is a good idea. There is no cure and no consensus on what is safe for Chiarians to do. Here is what I know from my own experience.

I run because I can. It's hard to explain unless you have experienced losing your mobility and quality of life. When it was taken from me and then given back, I valued it more.

I run to help others see you can live with Chiari.

I run because it makes me feel strong and brave.

I run because it's cheaper than therapy. The endorphin high you get from exercise is tremendously helpful with the emotional challenge of living with chronic pain.

I run because I don't want to give Chiari one more thing it has taken from me.

This one's gonna hurt

2011-03-06T20:49:00.000-05:00

A broken heart can cause as much pain as Chiari. Clearly Chiarians do not hold exclusive rights to pain or there would not be so many sayings, songs and poems on the topic. Here are some of my favorite sayings.

Giving up doesn't always mean you are weak; sometimes it means that you are strong enough to let go. ~Author Unknown

I don't know why they call it heartbreak. It feels like every other part of my body is broken too. ~Missy Altijd

Have you ever been hurt and the place tries to heal a bit, and you just pull the scar off of it over and over again. ~Rosa Parks

Relationships are like glass. Sometimes it's better to leave them broken than try to hurt yourself putting it back together. ~Author Unknown

Love is like a puzzle. When you're in love, all the pieces fit but when your heart gets broken, it takes a while to get everything back together. ~Author Unknown

Expectation is the root of all heartache.
William Shakespeare

It is true that I have had heartache and tragedy in my life. These are things none of us avoids. Suffering is the price of being alive.
Judy Collins
No matter what your heartache may be, laughing helps you forget it for a few seconds.
Red Skelton

"There is a time for departure even when there's no certain place to go."

Tennessee Williams

"When we live with resentment toward another our hearts close down. Letting go of our resentment frees us from placing blame on
them and allows us to look toward ourself for peace."

Tigress Luv

These last two are my personal favorites because they make you think.

Usually when people are sad, they don't do anything. They just cry over their condition. But when they get angry, they bring about a
change.

Malcolm X
The tragedy of life is not that it ends so soon, but that we wait so long to begin it.

W. M. Lewis

The power of a smile

2011-02-24T14:15:00.000-05:00

Things happen in your life that change you forever. Some people leave a piece of themselves with you when they die. Singing with Les and being his friend left a positive imprint on my soul. His smile or kind words would shift my mind away from pain and allowed me to find more joy. I wish I had better pictures and recordings, but I treasure all I do have.

Les would want all of us to remember to cherish each day, and never forget the power of a smile or kind word.

Good bye

2011-02-13T08:44:00.000-05:00

On Friday night our quartet gathered around my dining room table and the keyboard to sing through music and plan a concert at a retirement home this spring. I forget my pain when I'm singing with Pam, Les and Nelson. Our voices melt together and the notes connect in a way that makes it hard to distinguish our separate voices.Singing with them is one of my absolute favorite experiences.

Saturday afternoon Pam called me to tell me that her husband, Les, had collapsed while playing basketball and died. Les made my life better. He sent me energy without having to be asked. He shared joy when he had none to spare. I'm not ready to say good bye.

Tilt

2011-02-11T23:07:00.000-05:00

Pinball was one of my favorite games. Shaking the machine was never an option for fear it would tilt and end my game.

"Tilt —

A pinball machine will tilt, ending the current ball and discarding the end-of-ball bonus if the player moves the cabinet too violently or tries to lift it. Also see Slam Tilt.There are three mechanisms that are used to detect machine abuse. The first is simply a conical pendulum suspended inside a metal ring. This is called a tilt bob. As the machine is nudged, the pendulum will swing, and if it ever touches the ring, a TILT occurs. Most new machines can be set to give one or more tilt warnings before actually tilting, and tilting in this fashion causes immediate loss of both the ball in play and your accumulated bonus for that ball.
The second tilt mechanism is the "ball roll" tilt; it's a pinball sitting in a metal track inside the cabinet. The track has a shallow slope in the same direction as the playfield, so the ball usually rests in the bottom of the track; at the top of the track is a sensor. If you physically lift the front of the machine, the ball rolls up the track and contacts the sensor. At the very least, this is an immediate tilt with no warnings. On most machines, it's a slam tilt.
Finally, there are usually one or more impact sensors, placed in places likely to be the subject of player abuse, such as the coin door and cabinet. Banging on one of these places hard enough to trigger one of these sensors will cause a slam tilt."

I thought I was one of the lucky ones. I had one of the best surgeons in the country, no complications after surgery, steady improvement of mobility and a major reduction in pain. I overhauled my diet and lifestyle and have now run two half marathons. I have 110 facebook Chiari friends and encourage someone every day to hang in there. The reality of the fact that there is no cure for Chiari has hit. My symptoms have slowly returned and tonight I'm in Chiari style pain. Ready to put in new coins and start a new game.

Compassion

2011-02-05T08:18:00.000-05:00

One of my favorite Chiari bloggers has touched on an issue that has come up for me many times. Friends are often reluctant to mention they are in pain or suffering because they assume it cannot compare to what I am feeling. I could write about my reaction, but this passage from the Overflowing Brain blog does it so well, I want to share it.

"I really don’t feel good. But if you were to tell me that you had a headache, or you were sick, my only thought and only reply to you would be sympathy. I would be genuinely sorry that you hurt and I would offer you support in any way I could.

Because that’s what friends do.

It is irrelevant to me if your pain level matches, exceeds or doesn’t approach mine at any given moment. Because my pain doesn’t play any role in what you’re feeling or trying to cope with. My pain is a separate entity that cannot be compared to anyone else’s pain. And moreover, it shouldn’t be.

When a friend is hurting, physically, mentally, emotionally, spiritually, my job as a friend is to offer compassion. My job is to not ask you to compare yourself to what I feel or what another sick or hurting person feels."

A minuet of sorts

2011-02-03T12:51:00.000-05:00

One of my favorite christmas presents was a book I am listening to.

phrases that resound for me:

....a life shaped by pain

You are not alone

Learning to live with pain that will not easily abate or go away is possible.

Living with pain is a process... a minuet of sorts. Maybe not to the tune that you would have chosen.

Live and live well.

Mindfulness Meditation for Pain Relief by Jon Kabat Zinn

Where do I go from here?

2011-02-02T12:00:00.001-05:00

I've been thinking about getting back to this blog and haven't known where to begin.

WAKING UP- AGAIN
When you no longer get to pretend
   that you will always
   be here

You have to finally
   find a way-
   the way-
   your way-

to finally
   be here.
--Anne Myer

This was written by a colleague after she was diagnosed with a terminal illness. It is taped to the back of my office door and I read it every day as I hang up my coat. It's the way I live my life now.

Writing this blog helped me through a rough part of living with Chiari, and I'm pleased to know I have helped some of those who read it. I'm learning to live a life with pain, and I'm scared to come back to writing, as I feel more vulnerable now about letting people see my feelings and thoughts.

It's time to come back..... so here goes.

I did it!

2010-10-08T09:32:00.000-04:00

Four months ago I set a goal of running a half marathon. Along the way I met Greg on facebook who had decompression surgery a few years ago and ran his first half a couple of weeks ago.
I feel a tremendous sense of accomplishment to have finished and to have done better than my goal of 2 1/2 hours. There were times when I had tears streaming down my face. They were pure tears of joy at having my body back. The next half marathon is October 30th!

Final time 2 hours 15 minutes and 29 seconds

13.1

2010-09-30T11:32:00.000-04:00

This Sunday I will run my first half marathon. Perhaps I will walk some of it, but I plan to finish it.

The details surrounding Chiari are confusing, and the best I can do is pay attention and stop when things hurt. Some doctors tell you that you can never run again as your brain will forever be unstable. Some say nothing at all about running, but tell you never to lift more than 10 lbs. I don't think anyone really knows what is safe after decompression surgery.

The journey started last January after surgery with walk to the corner and built up gradually over time through 5ks, a 4 mile run and two 10k races. I'm thrilled to have this second chance to use by body in a way that makes me feel good.

Back to school!

2010-08-18T10:18:00.000-04:00

I have not written a post in a long time which on the surface shows how much better I am feeling.

My teenagers are back in high school and I am back at my own school, planning and preparing for my teaching year to start next week.

I am still doing better than before surgery. There are moments and days when pain and problems creep back in and I feel a twinge of pity and frustration. That is part of living with a brain condition for which there is no cure and scant definitive information about what to do to maintain quality in your life. So far so good for me.

Since May 2nd I have run 205 miles and plan to run a half marathon in October. One step and one run at a time........

Summer time and the living is .......

2010-07-03T09:12:00.000-04:00

Summer is always a time of cleaning out and catching up. We've made tremendous progress on hauling bags and bags of clutter out of our house, though there's plenty left to clear out. Doctor, dental and ortho appointments have been made.

My daughter and I started volunteering through Hands on Atlanta. For our first 4 hours we signed up to water trees in Piedmont Park. That sounded manageable. Unfortunately it rained and we were assigned the task of weeding. The first challenge was the heat and humidity. Atlanta is a hot place to weed in the morning. Within the first hour fire ants attacked our wrists and a few days later the poison ivy appeared. Our next try was in a warehouse for Books for Africa. It's a great concept and I recommend you check them out. They are given truckloads of books for free and then organize shipment to schools in 45 different countries. Again, Atlanta is HOT in the summer and this warehouse has no a/c. Within 10 minutes one volunteer fainted. We enjoyed our 2 hours, but happily headed to our air conditioned car.

Coming up next we will clean Oakland Cemetary, clean hotel soap, and package medical products. Wondering what fun awaits us there.....

I don't need reminders to be grateful that I am physically and mentally able to donate my time. It keeps me going.

Wonder

2010-05-28T08:12:00.002-04:00

I am in a constant state of wonder.

wonder if my neck will stop hurting
wonder if everyone else sees the beauty in the sunlight spiraling down through the trees
wonder if I will ever be free of pain
wonder if I give away as much joy as I receive
wonder if my friends who are struggling with job issues, medical issues, and depression will find the strength to overcome the struggles and maintain happiness
wonder if I will learn to handle my gifts in a way that they support me rather than overwhelm me
wonder if my kids realize how amazing they are, even when they make bad choices
wonder how much strength I have to take care of myself
wonder if my friends think I am crazy :)
wonder what new experiences I have awaiting me

What I am certain of is the depth of my awareness of my new world and how my curious excitement makes me feel like skipping through the trees. Pain and problems in my immediate life don't seem to have the same power to bring me down as far as they used to. I am bouncing on my trampoline of life........

A Celebration of Life

2010-05-10T12:19:00.000-04:00

When you allow space for change and new things in your life possibilities open up in surprising ways.

Possibility #1: Sleep remains an issue, even after surgery, and I work hard to deal with it. One morning in early March around 3:00 am, I found myself on facebook chatting with my friend, Eva. She is someone I knew 28 years ago in high school and the Chicago Children's Choir, but had not seen for the past 26 years. During the roughest days of pain she would pop up on chat to comfort and heal me.

We have both survived traumatic conditions with similar styles. This particular chat led us to plan a spring break camping trip to celebrate life. Through google docs we plotted the foods and items we would bring to Red River Gorge in Kentucky. Thankfully she was willing to drive down from Iowa with her pop up camper, so we would be camping in style.

I spent far too many spring breaks recovering on my couch, and on more than one occasion my husband's parents have come to take my children, so that I could have rest. It is difficult to adequately express the excitement I felt in knowing I could plan and go on this trip.

Sadie, Eva's wonderful doberman, kept us company as well as safe on our 6-7 hour hikes. The Red River Gorge is stunning, and Eva's company was just what I needed to refocus and heal my spirit.

This trip gave me many gifts. A renewed friendship that seamlessly picked up where it left off, a feeling of empowerment, and a new approach to eating that continues to make me feel wonderful. 85% of what I eat is what I refer to as live food. Fruits and vegetables, nuts, whole grains, and greek yogurt are eaten in small amounts every 2-3 hours. My entire sensory system was changed after surgery and I find myself enjoying new foods and paying attention to what my body wants and needs.

Possibility #2

Four days after surgery it took all my effort to walk from my bed to the kitchen table. From there I took walks to the corner, then around the block and soon I was walking on my treadmill for 30 minutes every day. Walking led to running. This new type of muscle pain was a symbol to me that I could once again be an active person. The first time I ran outside, early on a Sunday morning, I was shocked that there were so many other people running, biking and walking. Their energy was threading it's way around me as I jogged up and down the path. It filled me in the same way sunshine warms and cheers you.

The day I decided to make a goal to run a 5K race (3.1 miles) I went online and found the Sweetwater 420 5K a few weeks away with a finish line 2 blocks from my house. With the help and encouragement of a friend I signed up, trained and finished that 5K. In June I will run a 4 mile race to raise funds for epilepsy. I cannot imagine a better way to embrace the possibilities that stretch out in front of me.

The first step is allowing the space for the possibilities to exist, and then paying attention......

Beauty is only skin deep?

2010-04-20T20:57:00.001-04:00

I've just accomplished a major goal to run a 5K race and went on a celebrating life camping and hiking trip with a wonderful friend. I promise to post about that soon! The picture below is a sunset Eva and I watched one evening from Sky Bridge. Tonight my mind is on other things.

We've heard the expression beauty is only skin deep. If you google it you'll find on wiki answers thoughts such as: "It means beauty is beyond skin, it's in the soul." and "It means that what's on the inside is what counts, your personality.....the real beauty is the personality."

I had no idea that my journey of healing would be as personal and emotional as it would be learning to handle the physical changes. So here is what I have learned about myself in these past 4 months. I am as beautiful on the inside as I am on the outside and the way I choose to live my life has a positive impact on the people around me. At first I found all the excuses I could muster to not accept these amazing comments. Then I tried to put myself on a plan of trying to believe a small piece of it, like a mouse nibbling on a new food. And now I am stunned, humbled and brought to tears by the idea that what I do matters. For 17 years my friend Lisa has been with me through many changes in our lives. She taught me to be comfortable being myself, knowing that would attract the kind of people that would be good for my soul.

Another friend sent a message to me that has touched me so deeply, that I want to share a part of it here. I didn't have much practice being proud of myself or boasting about my accomplishments, but after surgery I am learning to do this a little at a time. So I will say I am proud to be a source of inspiration, energy, and joy for my friends. You give me as much as I have given you.

"I''ve had a year of watching you deal with something far more arduous, only getting a bit better in increments, never knowing your future,and working hard on both your health and finding those "pocket moments" where life is just undeniably good, pain or no pain. Huge effect on me. It's probably forever changed the way I view dealing with illlness. So--well. Thank you, just for being you. It's really helped me......I wonder who else going through a hard time---a divorce, a job loss,their own illness--has been secretly helped by your example?
Not just me,I'm sure!"

Happiness is like a jaw breaker

2010-04-04T17:08:00.000-04:00

I have tried to write a new post for several days and nothing has come close to expressing how I feel, so they sit as drafts on my posting list.

And now the best I can come up with is happiness is like a jaw breaker?

I'm actually being serious. As a kid I loved the endless pursuit of getting through the layers of this candy, and as hard as it was to get to the middle, there was always the beauty of discovering the color of each new layer. Not even sure if I ever finished a jaw breaker, but it did not seem to be the important part. This is my metaphor for learning to live in a body that is physically improved and a spirit that wants to burst free.

Each day I discover something new. With less pain and more energy, (and cerebral spinal fluid flowing properly for the first time in my life) I feel like a young child taking delight in the smallest and simplest things. I feel joy and happiness coursing through me in an overwhelming flood of colors- especially yellow. The hard exterior of a jaw breaker feels like the fear and sadness that washes over me at unexpected times. Brain surgery was not a cure, and there is no way to know how long I will feel this way. I feel like Cinderella who is aware her coach will turn back into a pumpkin and all the beauty around her will magically disappear, but her watch is broken and the timing of the transformation is unclear.

Rather than letting the fears drag me into depression, it reminds me to cherish my childish discoveries, laugh often, smile at strangers and live my life.

Friendship: Happiness is the experience of sharing joy.

2010-03-21T11:41:00.000-04:00

As you change the way you approach your life, your energy shifts to support your healing. When you find your inner joy, you also help others who touch your life and are searching for fulfillment.
From Wisdom Bowls by Meredith Young-Sowers

My life will never be the same.

As I rejoice in the great reduction in pain and symptoms I am learning to rediscover who I was before pain struck seven years ago. Maintaining my emotional strength and spirit feels like a roller coaster ride and tears are frequent companions.

I write to help me make sense of this life, and I am delighted that friends and other Chiarians read my blog. The comments you leave for me help tremendously. For those newly diagnosed with Chiari who have asked for advice, it would be my pleasure to help in any way I can.

This week I am reflecting on joy and compassion with help from the Wisdom Bowls book.

Happiness is the experience of sharing joy.
Joy is worth my investment.
Contentment comes from resolving issues within myself.
Life is precious even when it seems all wrong.
Compassion is a trust in the value of life beyond obvious suffering and injustice.
When we fill our hearts with love we attract others who are capable of loving.

As I heal, I am finding the gift of many new friendships and rekindled friendships from my past. My bowl of joy is overflowing with gratefulness for all the new and old friends who are choosing to be active participants in my life.

A Laugh Track

2010-03-08T17:16:00.000-05:00

Synonyms for laughter from dictionary.com:
amusement, cachinnation, cackle, chortle, chuckle, crack-up, crowing, fit, gesture, giggle, glee, guffaw, har-de-har, hilarity, howling, laugh, merriment, mirth, peal, rejoicing, roar, shout, shriek, snicker, snort, sound, tehee, titter, yuck

My pain and mobility are not the only things that have changed. Returning to work and singing is something I have posted about before. Now I find myself laughing and singing all day long. Often I am reacting to things that aren't really that funny! It's such an unfamiliar feeling that I was struck by how good it feels to laugh. Where did I store all of those laughs I was unable to utter? Laughter fills my spirit in the same way teaching, singing and listening to music does.
When my pain returns one day, may I have friends that continue to help me laugh and share their own laugh track to keep my spirit alive. In the meantime I cherish the tears streaming down my cheeks as I try to hold back the glee.

Life is good.

Around the world in 80 days

2010-02-27T11:14:00.000-05:00

I've been using acupuncture for more than 5 years, and it's strongest benefit has been to my spirit. I credit it with my spiritual strength. After surgery Kimberley gave me a beautiful pottery bowl because she felt I was supposed to have it. It sits next to my bed and holds thoughts written on small pieces of paper. Two weeks ago, I sat in the waiting room of Intown acupuncture looking at the same bookshelf that has stood there for 5 years. The title on the spine of a book jumped out at me, demanding I take it off the shelf and borrow it.

Reading this book has made me aware that my life is enveloped in circular shapes.

From Wisdom Bowls: "Two people can have the same experience , after which one feels depleted and undone for life while the other is able to move on. Our way of evaluating a situation is based largely on how much we trust ourselves.."

According to this book there are 7 qualities of your authentic self. Wisdom, Vision, Joy, Love, Power, Intimacy, Abundance. Ironically, wisdom serves us by strengthening our brain, spinal cords and nerves. It helps us recognize we are capable of great things and allows us not to be discouraged, deluded or deceived into feeling insignificant.

I'm thinking about the role of circles in my life, especially during the past 80 days since surgery. Circles in art remind me of safety and holding important things, I love walking in circles on a track better than anywhere else, I teach folk dance where my students and I travel in circles, we sing rounds that could go on continuously in a circle forever if we wanted them to, I like singing in choir when we stand in a circle or semi- circle shape as I can see those I am singing with and feel connected to them, the most significant piece of jewelry I own is a ring I was given when my son was born 17 years ago, my favorite sights are the moon and waves as they crash around in a circular shape, I suddenly realized I have bowls scattered all over my home, I absolutely love hugs which make me feel like a connected circle, I love watching bubbles drift in front of me......... I could keep going. Listing all of them seems less important than recognizing the significance this shape plays in my life.

I feel a tremendous circular shifting within my spirit which is both painful and exciting. I'm on a spiral path without a clearly defined ultimate destination except forward.

A final quote from Wisdom Bowls: "It takes a great deal of courage to consider that blessings live beneath the difficult challenges we face. While a challenge doesn't feel good, it does good as it allows us to create new possibilities for our lives and put behind us what we can no longer change."

How I look to others.........

2010-02-24T09:17:00.001-05:00

Fragile or healthy? What do people see when they see me in person?

It is entirely unfair to expect anyone to understand how great I feel these days without being able to read my mind. I am back to teaching full time and LOVING it!

Here is some perspective to try to help you. I am 44 years old and have had this brain condition since birth, but I only became aware it had a name last October. For the first time in my life my spinal cord/brain stem is not being compressed and cerebral spinal fluid flows as it should in my body. I rarely have pain and when I do, it pales in comparison to what I endured on a daily basis. I became adept at hiding the amount of pain I was in from everyone which was exhausting. Now, I do not recognize my own body. I have more energy, joy, fluid movement, balance, less nausea, etc. When I imagined what surgery might change for me, I never imagined feeling this good.

When people ask to help me or question whether I am well enough to do something, I am trying to be patient and understanding. If I am amazed and stunned at how good I feel, it is understandable that those around me will need time to process and accept that I am healthy and fine.

Do I have a day or years to feel this good? No way to tell how long the surgery will last, but I am not going to sit still waiting for a return to chronic pain. I'm off and running!

Back to school

2010-02-08T16:43:00.000-05:00

I left the house on foot at 7:20 this morning and headed for school. Surprised myself by crying through breakfast and feeling scared as I walked the familiar 8 blocks through my neighborhood with my ipod and ear buds crammed in my ears. As I approached the door of my music building I realized the fear was understandable. All the work I did to learn to walk again, sing and fight back against Chiari was for this day. Today was the day I walked into my classroom without a cane or wheelchair and a spring in my step.

I'm only working mornings this week, but that is enough to wear me out. I came home, ate lunch and slept for an hour.

I love being back in the role of a teacher. Without massive levels of pain it feels so different and I feel so different. I will blog more about this when I've had more time in front of my students to figure things out, but today was a good first step.

Playing the sound of.... recovery

2010-02-06T09:32:00.000-05:00

I am still working on rereading my cards and have gotten through 100 so far. The last 2 days have been difficult and I am working to manage my attitude about some returning pain. My spirit tells me I am going to be okay, but I am scared to lose this gift of a renewed quality of life.

This card from my 5th grade student, Letty, touched me and fills me with inspiration me each time I read it. I want to share it with you.

Playing the sounds of... RECOVERY (images of 2 recorder players are on the cover)

Dear Miranda,
I really hope you recover fast!!! I've been reading your blog, and I decided something. You are the bravest person I know! Forget spiders and tornadoes, Brain/nerve surgery must have been terrifying. Not to mention the burning in your hand (before) and not telling your students. You have inspired me to teach recorder, and that is heroic. You are always so calm, cool, and collected, and you set a great example. Keep on smiling, giving and teaching. You know your students miss you! Enclosed is a bravery badge... you deserve it!

The badge says: BRAVERY MIRANDA DILLARD is a brave person for withstanding pain.

Thank you Letty. It is clear that my students teach me as much as I teach them.

Hope your life is full of music!

2010-02-02T18:40:00.001-05:00

Six days after I came home from the hospital, two giant shopping bags of cards arrived from my students. They came from my current 5-10 year old students, former students in the junior high and high school and my co-workers. My daughter read each one to me and we taped them on the wall across from my bed. At the beginning of January, my mother read them all to me again. This week as I prepare to go back to teaching I will read them one last time and save them in a special box. My friend Eva calls it the Box of Miranda. Writing about this still brings the positive energy from the creators of the cards powerfully back to me.

There were so many kind and hopeful thoughts expressed on these pieces of construction paper. Here is one that resounds with me at this stage in recovery:

Hope your life is full of music!

The healing process has required physical as well as mental work. Some days I felt myself moving forward and other days I clearly felt the strain. Close friends continue to remind me that my worst day now was similar to my best day before surgery. At some point since my last post I felt as if a switch was flipped and I came back to life. It was that sudden and intense. I had not realized I was gone, but in safeguarding myself to withstand Chiari pain and then the surgical intensity I must have tucked my spirit deep inside myself for safe keeping. It was so deeply hidden I had forgotten it's location and importance.

Hope your life is full of music! Music led me back to my spirit.

The 8 year old card writer knew the key for me to find my way back.

For the first 6 weeks I found sounds very difficult to handle. My sensory system craved silence and darkness. I still have not watched more than 2 movies and watched the news three times. Television holds no interest for me. Music, though, has a powerful effect on me.

My ipod, sitting in a donut shaped speaker, has kept me company beside my bed for all of my recovery and I place it next to the treadmill as I do my 3 mile walk each day. I felt driven to return to choir practice on Sunday nights not only to enjoy the company of good singers and friends, but to bring myself closer to filling my life with music.

As I spend more and more of each day out of bed, I find myself vocalizing, singing new styles of music, trying to retrain my numb fingers to play the guitar and piano and playing new recorder pieces. Singing no longer hurts and my throat does not burn or feel as if it is closing. The notes feel as if they are floating out, despite all the work my out of shape breathing muscles are doing. Listening to music creates a deeper emotional response than I have experienced in a long time. Life seems possible and I feel joy-even on the tough days. I feel like life has been returned to me and I have returned to life.

Now I wonder where it will take me.....

a roller coaster of emotions

2010-01-22T11:49:00.001-05:00

The good news is I am feeling much better since I wrote my last post.

On January 19th I got the news that the disability insurance company expected me to return to work on the 25th. My reaction was to burst into tears of disbelief. I can't drive, lift, shop, walk far without a cane, or think coherently without exhaustion, but I was going to be entrusted with the care of 5-10 year olds in my music classroom.

January 20th I saw my neurosurgeon for a follow appointment. My recovery is going better than expected, I am safe from most of the major complications that would have arisen by now, and my scar is healing well. Even though my left hand and leg are not back to "normal" he believes that the fact that they show improvement means there is potential for improvement over the next year. He also convinced me that I would not hurt myself in going back to work. Even though my neck muscles are not healed and my neck aches after 60 minutes I will not harm myself and in fact get stronger. Officially I am cleared to return to work Feb. 8th which is just under 9 weeks since surgery. Good news-right?

I eagerly went home to email the person in the school office who handles leave and benefits and then sent word to my music colleagues and head of the elementary school. I received offers of support and excitement through facebook and am told the elementary faculty cheered at their meeting when it was announced that I was returning 3 weeks early.

In my excitement about my better than expected recovery I did not anticipate a SNAG. My school contracted with two substitutes to teach for me until March 1st. It looks like I might not be able to come back until then. I understand, but I really wanted to make my way back towards teaching and a regular life. And as disappointing as that is, it also means that after Feb. 8th I don't get paid since I am "well enough" to work.

More irony I guess.

The moral to the story is: I realize these are logistical problems that pale in comparison to being a SURVIVOR. I will not let myself get lost in the details. There will be a day when I don't hurt, my fingertips can feel again, I can walk without the muscles fatiguing and wobbling, and most importantly when I don't think of myself as a sick person.

Life really isn't fair sometimes

2010-01-14T14:21:00.001-05:00

Irony: noun an outcome of events contrary to what was, or might have been, expected.

37 days since surgery and I wonder when counting the days won't seem as important. The ironic piece of living with this condition has been thrust in my face for the past 14 days. I worked so hard to hold my emotional self together before and during surgery, that now as I show so many signs of improvement I am finding my mood swings up and down in an unpredictable way. Instead of feeling happiness over surviving the surgery, and a major reduction in symptoms, I dwell on the things I cannot do yet. My left hand and leg are not 100% and may never be, but they work and do what I need them to do. I am exhausted and find that as my neck muscles continue to heal they get tired after 60-90 minutes, and yet I don't have the excruciating hot lava chiari style headaches. No more vertigo, dizzy spells, burning throat pain, back pain and nausea.

I know that the best thing I can do is focus on helping my body heal and become more healthy. What I keep feeling is frustration over not being able to teach. I miss the flow of the school day, the energy and challenges of my students, and most of all I don't feel very useful. Realistically I know this is not helpful thinking, but it's where I am. When I do too much I end up spending the next day in bed. How do you not feel guilty about that? Too much just means standing or sitting for more than an hour, or thinking for too long. It's not like I am shopping or doing anything strenuous.

So yesterday I put my cross trainers back on and hit the treadmill for 24 minutes. I had my mind set on so much more, but I listened to my body and when my left thigh started wobbling and aching I stopped. Today, Margaret and I took a slow walk to the park and back, with a stop at the flower shop as I have developed a craving for flowers in my bedroom.

If Chiari didn't stop me then I certainly won't let irony get me either. I can fight back with flowers, walks

and music!

Right before surgery, Mary, my mother (in law), gave me a card that I keep next to my bed. Every time I read it, I still cry tears of joy. It says:

Life really isn't fair sometimes.

But the good news is that you will get through this.

You've got the inner strength and determination to get through anything.

And if you ever feel like

you have to be reminded of that,

just let me know.

I'll tell you

as many times

as you need to hear it.

What a difference a month makes.

2010-01-06T10:42:00.000-05:00

Time passes differently for me now, and changes as I get stronger. Some days are almost pleasant and I have had a few short outings which truly lifted my spirits. There are still the mornings or nights that remind me I am tired of being in pain and sick. The emotional battle can be as tiring as the pain, but the fact that my Chiari symptoms seem to be gone is so wonderful!!

Here is a reflection on the difference between a typical day for me one week after surgery and now 4 weeks after surgery.

Typical day- one week post-op
6:00 am
wake up, take pain meds and stay in bed until 8:00 when the pain has eased enough to get out of bed.

8:00 am
It takes a tremendous effort to make my way a few steps down the hall to the kitchen for breakfast. I am still dizzy and weak, so I hold on to the walls as I walk. My neck muscles and head are so sore I hold my head up while eating.

8:20 am
head back to bed to sleep until lunch

12 noon
repeat breakfast process for lunch
head back to bed to rest

6:00 pm
repeat breakfast process for dinner
I can stay in a chair at the table for a little longer at this time of day.

7:00 pm
head back to bed to rest

Typical day- 4 weeks post-op 1/5/09
-no more medications except over the counter
-sleep is VERY difficult and unpredictable
-I sleep no longer than 3 hours in a row
-the lack of sleep is causing me to feel weak, dizzy and sick

6:30-7:00 am
wake up, and wait 30 minutes while ibuprophen kicks in
7:00
coffee ( I can even make it for myself now!)
8:00
breakfast
I still don't have an appetite, so a protein drink usually works best.
Mornings are good times usually. I read a little, (I have a childhood friend who is reading The Phantom Tollbooth to me over the phone) e-mail, sing, listen to music, play word games, and anything that can be done laying down. On good days I take a walk outside, but for this I use my cane.

12
Lunch. I am still not cooking, but I no longer have to hold my head up and I have conversations during meals. I clear the table and sit around talking.

Afternoon
I was NEVER a nap taker, no matter how tired I was, but now I must have rest in the afternoon.

6:00
dinner
I can help more with setting the table and clearing up.
Some nights I can stay sitting up to watch movies or talk with people.
I am sensitive to sound and it is hard to read for long without my eyes and head bothering me.
The head pressure and pain is the worst at night. My new symptom is a repeated popping in my left ear. I still have ringing in my right ear and a muted jackhammer type pain in the left ear. Sometimes it is even amusing since I am the only one who can hear it.

I have been out of the house to several doctor and acupuncture appointments, one outing to the flying biscuit (at night when it was not crowded or loud), a ten minute trip to Target which was clearly a mistake, and a short try at singing in choir rehearsal. Sitting and standing hurt my neck and head, and laying down is my best position, but as I get stronger I am trying to extend the time I am up and around.
This is a tricky surgery to recover from, If you do it too fast, you can set your recovery backwards, and each Chiarian reacts differently to the surgery. How healthy you were before surgery is also a factor. I was a healthy weight, a strong walker and had gone to part time teaching to rest before surgery. I think all of these things helped.

Life with Chiari Malformation

2009-12-28T16:58:00.003-05:00

WARNING: POST CONTAINS A PICTURE OF MY SCAR

I spend as much effort doing things that will help my body heal as I spend doing things to heal my spirit. For some with this condition, a blog serves as a place to release all the pain, depression and desperation Chiari drags down upon you. I imagine once it is written down the severity eases a bit. Some Chiari bloggers use the space to educate us about this rarely heard of condition. A third type of blog attempts to inform loved ones of the specifics of that particular person's treatment. After seven years of managing chronic pain, I was diagnosed in September. When I look back at my own posts, it seems my blog has been a blend of all types of blogs. I have purposely left out much of my personal pain and suffering to shield my readers. There is no reason you should be miserable too!

As 2009 draws to a close, it seems fitting to look back at the titles of my blogs:

9/9 Chiari Malformation and Trigeminal Neuralgia

9/16 It's not brain surgery- or is it?

10/1 Shopping and learning

10/12 Next step: Neurosurgeon

10/21 It's funny that brain surgery is starting to sound good.

10/28 Cine MRI Nov. 6th

11/4 Random thoughts

11/6 Cine MRI is done

11/11 Surgery date is December 8th

11/16 cerebrospinal fluid (CSF): Who needs it?

11/28 Circle town

12/4 I'll get by with a little help from my friends....

12/7 Surgery details

12/15 On becoming a zipperhead PART one

12/17 On becoming a zipperhead PART two

12/24 A wonderful end to a challenging year

The two sides of me.............

November 7th

William Baker Festival

Singers concert My "zipper" 6 days post-op

A wonderful end to a challenging year

2009-12-24T17:50:00.002-05:00

Christmas Eve

16 days since surgery

I am in less pain

I have wonderful friends and family

Joy is creeping back into my life
MY DAUGHTER'S MRI SHOWED THAT SHE DOES NOT HAVE CHIARI!!

...........

Here are some of the "gifts" I have received:

I have become more purposeful,

reflective

observant

grateful

slower and therefore more focused

determined

stronger

happier

I have friends from near and far

I laugh and cry tears of joy

I walk without a cane or wheelchair

I possess a new delight in living

2010 seems open to possibilities!

On becoming a zipperhead PART TWO

2009-12-17T13:04:00.001-05:00

Brain decompression surgery/Craniotomy and Laminectomy December 8th 2009
Part two
In medical terms, this is what they did:
The object of treatment is to stop the progression of symptoms, and hopefully to relieve symptoms. This is accomplished by decompression of the the brain stem, cerebellum and spinal cord, as well as re-establishment of spinal fluid circulation. Decompression is achieved by removing the bony structures compressing the brain stem and cerebellum. A posterior fossa decompression is the removal of the bone from the back of the posterior fossa, called the sub-occipital bone. The outer covering of the brain, called the dura, is opened and a graft inserted. This helps make more room for the brain and the spinal cord. A cervical laminectomy involves the removal of the bone forming the back of the vertebra or lamina. Both procedures are done at the same time, through the same surgical incision in the back of the head and upper neck.

My view of things Day 2 through 4
12:00 noon Wednesday Move to a regular neuro. room (first attempt)

Another painful and nauseous journey to a new room. This time they slammed my left foot into the back wall of the elevator in order to get the bed to fit. Thankfully my head pain was strong enough to dilute the significance of this pain. We moved into a large room. Mary, my mother-in-law had joined us by now, allowing David to go home and get a shower and some sleep. After a couple of hours, two nurses entered the room to apologize and ask us to move to a different room, as someone else needed mine. That was not a problem-my only concern was whether I would have to make the painful move to a new bed. Little did I know, that should not have been my biggest worry. In order to move, my bed needed to be raised. There are electronic controls for straight up and down movement and for separate lowering of the legs and head. I hope their nursing skills are stronger than their bed skills, and thankfully they were not my nurses. The nurses proceeded to lower the foot of the bed, essentially turning the bed into a ramp. At this point I had to grab on to the sides of the bed in order not to fall on the floor. We both tried to clearly and firmly tell them they were going to drop and hurt me. Oblivious to our continued protests, they continued to focus on the buttons. Mary and I both used our "teacher" voices to command them to STOP! Keep in mind that any movement at all sent me into waves of horrific pain. At this point I was spending all my energy attempting to keep every part of my body motionless. At some point before I slid down their ramp, they looked up and stopped. I still had not eaten anything except ice chips and in the midst of this chaos, my food arrived. Upon hearing I was changing rooms, my food was whisked away, not to reappear for hours.

Move to a regular neuro room (second attempt)

My new room was tiny, but it was a private room, and as I could not walk, space was not important. The rest of the time was spent in darkness and silence, with a team of three wonderful people taking turns staying with me. Mary, Elana and David calmly and efficiently helped me with eating, walking and resting. I am so very grateful. The best thing they did was bring books and sit quietly so I could rest. I was not alone for even a minute of my hospital stay. Talking was almost impossible, and I am told I spoke to a couple of people briefly. I imagine it was not much of a conversation. For everyone who wanted to call or visit, please know that at that point I needed to do everything I could to rest and handle the pain. Seeing people would not have been helpful or healing. Thank you for understanding.

I had a series of fantastic nurses who made my healing easier. Jackie was especially helpful-she even pulled my remaining hair into a single bunch which stuck straight in the air like Pebbles. My hair still has to stay off my incision. Highlights of Wednesday through Friday:

food issues: This was the hardest part. I finally managed to get some liquid meals starting Wednesday evening. Getting them to switch to solid foods was just as challenging. I finally sent my husband to the cafeteria to get me a grilled cheese sandwich.
physical therapy: The focus was to get me up and walking. Unfortunately I had just made two trips to the bathroom and had nothing left to use for walking. They wanted me to do arm exercises until I reminded them I had a six inch incision in the back of my head and that would not be a good idea. They never came back for my next session. I know I was polite, but I was grateful to not see them again for the "stairway" work.
tv/intercom/nursing beeping: The new room was across from the nursing station so we were entertained by constant beeping sounds. The tv randomly turned itself on and flipped itself through channels as if possessed. Repairmen came several times, squeezed themselves into the room, and stared up at the ceiling. Eventually they decided I could have a working tv, but that would involve disconnecting my nurse call button. I don't care much for tv at home so just asked them to stop coming and unplugged it. This possession also affected the intercom system so that several times an hour the side speakers on my bed(next to my ears) would broadcast the voices of nurses saying things such as "Jackie location?" "Everyone go and assist in room 350 immediately." These three things provided more than enough sensory overload for my head.
best items to bring: I needed chapstick and my chiari/zipper pillow. That's it.
tubes, tubes, tubes and more tubes: I was overwhelmed with the number of devices, tubes and monitors attached to my body. To leave the bed to go to the restroom involved disconnecting the oxygen from my nose. It would have helped for someone to teach me how to do this. I got the part where you insert the prongs in your nostrils, but the placement of the tubes and the role of my ears mystified me. They make it look easy on television.
when to check out: Essentially their job is to stabilize you, make sure you are not having bad affects from the surgery, find pain meds that work for you and send you home. They told me there is nothing more they can do once they have done these things, so it is best to go home. I spent 4 days and 3 nights in the hospital.

I am so very happy this piece is behind me. Could I face this surgery again? Yes, let's just hope I don't have to. To everyone who prayed, encouraged or sent positive energy my way-Thank you. I felt surrounded by you.

If you are a chiarian facing surgery, please feel free to contact me with questions. The encouragement and advice from my zipper sisters helped me so much.

On becoming a zipperhead PART ONE

2009-12-15T21:35:00.005-05:00

The story through facebook posts as reported by my family:

TUESDAY

7 am headed to operating room

9:34 miranda is in recovery, neurosurgeon says all went well

1:40 (did not actually happen until 3:30)Miranda is being moved to icu, she should be there for a day. she is resting, semi awake,in pain and recovering as expected

WEDNESDAY

8:48 am Miranda is still in icu, should be moved to a regular room this afternoon .she is doing better, more coherent,tired,in pain and cranky.

12 noon (posted 4:44 pm )

Miranda is out of ICU and in a regular room. No visitors, please.

THURSDAY

6:19 am minor setback- back on oxygen

11:43 am miranda just had physical therapy, she didn’t know walking 20 feet could be so tiring.

11:06 pm my neurosurgeon is happy with my progress. I might be home on Sat.

FRIDAY

8:40 am This is from Miranda! off of morphene on to vallium and dilaudid, nausea is gone, 2 of the 3 ivs lines are out, the only pain is from the surgery. neck and throat are swollen and hurt, 6 inch incision aches and the left half of my head is numb. walking to the bathroom or eating exhausts me

SATURDAY

2:55 am Miranda Bator Dillard is home from the hospital and thankful for pain

meds. No visitors, please.

Here's the rest of the story...

Tuesday 12/8
5:30 am Signed into the same day surgery waiting area. Some of the other patients came armed with bags of food and supplies, making me think they had done this before. We had cell phones and the clothes on our backs. Very cheerful nurses call you over to verify who you are and what they are doing to you. I got a special red star on my hospital band because I was a fall risk.

6:00 am More cheerful nurses hook you to machines and take your clothes away in a clear plastic bag. Lots of horrible hacking noises from the other side of the curtain distracted my nurse who quickly scurried away with mask in hand.

6:20-6:50 am My anesthesiologist quickly put me at ease and understood my fear of intubation causing injury to my singing voice. She was happy to use a smaller tube and before long had all 3 iv ports inserted. The arterial iv she said you can't see, you just have to feel, Lucky for me she had good feeling skills. She answered my questions about the operating room and the order of events which helped quiet the thumping in my chest. Three more doctors set about inserting 10-12 different substances into many different bags hanging on the two iv poles behind me. One doctor told me I looked like the head anesthesiologist, Dr. S. That's the last thing I remember....

9:40-3:30 Recovery room: Lying on my back, unable to move anything, my eyes opened as if waking from sleep. Curtains hung down on both sides of me. Tubes and cords seemed to be coming from every possible place on my body including my ankles. Moaning and gagging sounds spontaneously came from various parts of the room and went on for the 6 hours I lay there. There was oxygen in my nostrils, an iv on each wrist, a clamp on my finger monitoring my heart and oxygen levels, compression stockings from ankle to above my knee that inflated and deflated constantly like a blood pressure cuff, a blood pressure cuff that remained on my arm for the next 2 days, and ekg type stickers scattered all over my body. My husband was not allowed to join me until 1:30, so I was at the mercy of a nurse who fed me ice chips. Behind the curtain on my left a female patient was clearly in distress and surrounded by nurses trying to figure out what her most immediate problems were. She could only moan and was unable to speak for herself. A doctor or resident was called and she spent her time lecturing the nurses about what they had done and how they were speaking to the doctor. I could not move or speak above a whisper, but was so frustrated that the doctor could not focus on the patient. I did my best to croak to my nurse that it was upsetting me to see this patient not getting treatment. She told me they had called in another doctor.

My recovery was fine, and I would have been moved in an hour or two, but there were no neurological ICU beds available.

3:30 Tuesday through 12 noon Wednesday ICU

The move on the stretcher from recovery to ICU was the most painful part of the recovery room process. From the move over bumpy floors, the elevator ride, to the change from the operating/recovery bed to the patient bed, my pain was pushed to it's limits. They really do pick you up in a sheet and swing you over to the new bed. Ouch!

Lots of deep breathing and nausea....most of this time is a blur. The pain was so intense that I was unable to speak and all my energy was absorbed by breathing and trying not to move. Moving=searing, burning axe cutting pain. David tells me now that the nurse thought I was sleeping, rather than shutting my eyes due to the pain, and she assumed that meant I did not need pain medication. This pain was worse than childbirth.

It was clear that I would not be able to see my children-even for a few minutes. I hated that decision. I remember a dark room (thankfully), lots of beeping, monitors, blood tests, and questions like "Do you know your full name?" "Do you know where you are?" "What month is it?" I knew the answers, but it took tremendous energy to find a way to say them out loud. When I could not add a quarter plus 2 dimes, I stalled by responding "Are you kidding?" At this point I was still only drinking ice chips and no other food or liquids. The nausea kept the hunger at bay.

Surgery details

2009-12-07T14:24:00.000-05:00

Passed all the pre-op tests and am ready for surgery. The way the nurse practitioner
explained it, craniotomy surgery (another name for brain decompression surgery) just means they will make a cut in the back of my head, take out a bone, put in a patch and seal me back up. Oh and she said it would hurt a lot. not a surprise!

Details
5:30 check in at Emory Hospital
7:30 surgery
surgery will last 2-3 hours
2 hours or so in the recovery room
Intensive care for Tuesday
Wednesday, if doing well, I move to a private room for another 3-4 days.

I'll update when I am feeling up to using the computer again.

I'll get by with a little help from my friends......

2009-12-04T08:11:00.000-05:00

I have spent time thinking about how to help friends in crisis in a way that would be helpful and not intrusive. At times I end up doing nothing due to my indecisiveness over what to say or do. This post is written with that in mind. Even if you don't have time to do something on this list for me, remember the ideas and use it as a guide the next time a friend needs compassion and help.
If you want to come visit, PLEASE CALL FIRST. Understand that most likely I will be thrilled with a visit, but some days I won't be up for it. Some days I may not be able to talk on the phone. Don't take it personally and keep trying until we can work it out. If things go well I will be home from the hospital on December 12th. The first 2-3 weeks will be the toughest and I expect to be mostly in bed for the first 4-6 weeks.

Send a card, e-mail, text message (Tell me something you're struggling with or thrilled about)
Lend me a favorite dvd, CD, magazine, book, article (If I'm up for it, come watch, listen or read it with me)
Bring me a caramel or vanilla milkshake. Yum!
If you know my kids and you can think of something you could do for them or with them, that would be great. Rides are especially helpful.
Send me pictures/photos of things important to you. Include stories if you can.
Visit with me and tell me about life outside my house.
Festival singers: (Laura is taking care of my music and notes) I'd love to hear what I am missing in rehearsals. Record a song from rehearsal and bring it to me to listen. I probably can't sing the Feb. concert, but I will be in the audience!
Remind me that life is beautiful and I will have mine back someday.
Facebook friends: play word games with me, send me jokes, videos, messages, etc.

I'm still Miranda underneath the Chiari layer. The surgery is not a cure, but it should make life easier. I can't wait for the day when the question, "How are you?" isn't so hard to respond to.

I send my gratitude and love to all of you reading this. Facing this condition has made me realize I have never been happier, and my life has never been this full of friends and positive energy. It's been a good ride.

miranda

Circle Town

2009-11-28T22:06:00.003-05:00

Vertigo-a dizzying sensation of tilting within stable surroundings or of being in tilting or spinning surroundings. Just the latest in my list of crazy symptoms. It hits like a tidal wave and sends me fleeing to my bed where it takes effort not to fall on the floor. A facebook friend has named the time I spend with vertigo as Circle Town. Keeping my sense of humor has been very important to my spirit.

I am hoping many of my symptoms go away or are much reduced after my decompression surgery on December 8th. Thought I would list all of them so I can check and see where I am in 3 months. Some last for minutes and some for days, but they all interfere with life.

Neuralgia in my left hand (burning and numbing pain that freezes my fingers and hand and renders it useless) Gabapentan taken every night helps slightly with this.
Pain in my left thigh, foot and toes (ranges from a feeling of broken shards of glass to burning fire and stabbing jolts)
NAUSEA (I've lost 10 pounds and find this one of the worst symptoms to tolerate)
Insomnia (some nights I don't sleep at all)
Throat pain especially when singing (same burning stabbing pain as in my hand, leg and toes) The only way I manage to sing in choir is with ice packs on my neck and tons of water.
Burning pain in my left eye (feels as though my eye does not belong to me)
Blurred vision in the left eye with wavy lines and funny outlines
Ice pick and flaming, stabbing pain in the back left side of my skull. OUCH!
Burning searing pain across my neck which makes it difficult to hold up my head
Hot lava headaches in the back of my head-if you have chiari you probably know what I mean
My head feels as though it is 50 pounds and is difficult to hold up
Vertigo- this makes me unable to function
Exhaustion- even when I get sleep. I am so tired that every piece of me hurts. Speaking can be difficult.
Memory issues- both short and long term. Sometimes I have no idea what I have just said.
Concentration problems. I was the supreme multi-tasker. I find it difficult to concentrate on even one task at a time.
Dizzyness and balance issues. I can fall backwards if not using my cane
Difficulty getting my left leg to move when I walk. I find myself telling my leg to lift off the ground.
Back pain-this I have managed for 7 years so it seems like a paper cut in comparison to all the other symptoms.

cerebrospinal fluid (CSF): Who needs it?

2009-11-16T21:06:00.000-05:00

To explain my condition in simple terms: my spinal cord is being compressed by my cerebellum because my skull is not large enough. My cerebrospinal fluid is impeded and not flowing properly. I had no idea what my CSF did for my body until it stopped doing it! Here are some of the things it does for your body.

Protection: the CSF protects the brain from damage by "buffering" the brain. In other words, the CSF acts to cushion a blow to the head and lessen the impact.
Buoyancy: because the brain is immersed in fluid, the net weight of the brain is reduced from about 1,400 gm to about 50 gm. Therefore, pressure at the base of the brain is reduced.( I can personally attest to this as my head feels as if it weighs 50 pounds!)
Excretion of waste products: the one-way flow from the CSF to the blood takes potentially harmful metabolites, drugs and other substances away from the brain. (Probably explains why I can't drink alcohol)
Endocrine medium for the brain: the CSF serves to transport hormones to other areas of the brain. Hormones released into the CSF can be carried to remote sites of the brain where they may act.

I would add problems from the compression on the spinal cord.

#5. control of motor skills such as leg and hand movements

#6. memory and concentration

For more detailed sketches (not gory I promise) and explanations of my decompression surgery go to: http://www.pressenter.com/~wacma/chiarioperation.htm

I am a member of a yahoo group for people with Chiari Malformation. I posted a question asking how people came to make the decision to have surgery. Here are three of the responses.

Remember, even with surgery, chiari is not cured, it is only accomodated. This means that you must have life-long adjustments to keep the monster from rearing its ugly head at the most inopportune moments.

Now with all that said - I am ecstatically happy to be here and alive - life is good and God is good! Because chiari is part of your life, your life is not over by any means. You just have to be aware of its presence. (T. F. )

My decision was easy, quality of life, currently I have none, once I went over who and what I used to be with my neurosurgeon we both quickly came to the same conclusion. I am currently waiting for my surgery date.

My decision was not very hard. I work at a hospital and, when certain doctors found out about my ACM they sat me down and explained everything to me like I was a third grader. I have a 13mm herniation and I was told that anything over 20mm could be life threatening.

Surgery date December 8th

2009-11-11T15:34:00.001-05:00

Monday, December 7th will be a 2-3 hour pre-op appt. with blood work, ekgs and other tests.
Tuesday, December 8th I will have decompression surgery at Emory Hospital. I am to report at 5:30 am.

The nurse would not give me results from the MRI. She said my doctor does not report findings in percentages, he just says yes or no to surgery. So amazingly I don't know anything more, but I am so tired and so ready to have this over with that I don't care what the results are. I do have a herniated disc in my neck that the nurse says is not causing my symptoms and is not related to my Chiari.

Here are some of the wonderful things being done for me:
-Kristi is arranging someone to take over my car pool duty
-Kate and Georgia are doing all the work to get my classes covered and details handled. Virginia #2 is covering for me as often as she can.
-I am going down to 3 days of work a week since I am so exhausted and need to build up strength for recovery.
-Colleagues are coming in and starting my class and just letting me know they care
-Food is being arranged again for delivery to the Magic Box
-Janet has brought food over for several weeks
-Mary is arranging to fly here before the surgery to help
-My parents donated $500 in honor of my birthday to the Chiari Foundation
-My parents will come in January to help and the Sisks will come in late December
-Several friends have offered to be a personal help while I am in the hospital to speak up for me and watch over my care
-Many, many friends have offered things they can do to help in my recovery.
-I know there is more, but my memory function isn't great right now. I'll keep adding.

I WILL MAKE A LIST OF THINGS YOU CAN DO IF YOU WANT IDEAS OF HOW TO HELP.
It will range from sending a card to reading to me to bringing me a caramel milkshake.

Here we go............

CINE MRI is done

2009-11-06T17:49:00.001-05:00

I have no idea how long it will take for results, but hopefully in the next week. This was my 6th MRI, but my first one at Emory and first CINE MRI. They were efficient. I was told the scan would turn out better if I didn't swallow. hmmm 2 1/2 hours without swallowing? When we got to the point where they slide you out to insert the dye into your I.V., the machine broke. A new banging started above my head and a voice that identified itself as "Felix" explained he was there to repair the machine. Doesn't do much to instill confidence in the whole process, but Felix must be good at his job as the machine was back to hammering and banging in about 10 minutes. I got the standard line that they got what they needed. I sure hope so.

As I walked into the hospital, a patient stopped me to point out a beautiful flaming red tree. It was one of the best sights I have ever seen. Don't forget to look up once in a while.

Funny that I feel so physically sick and yet I feel fleeting glimpses of joy and hopefulness. I am headed in a direction that could give me back my life.

random thoughts

2009-11-04T08:22:00.000-05:00

Writing this blog has helped me in so many ways. Please feel free to ask me questions as well. Most of the time I don't mind talking about my condition, procedures, surgical plans, etc. The act of writing helps in processing what I am going through. As my way of coping I have mostly stuck to the facts and the concrete aspects of how this is affecting me. The blog wasn't a place I wanted to use to complain. This post moves into the abstract affect of Chiari for me.

When I talk to people face to face, I see horrified faces, compassion, concern, and shock. I've had all those reactions as well. People tell me how brave I am, but that's not really true. I'm just really good at holding things together. It's what I do as a teacher and mother. I'm not holding anything together anymore-including myself. I don't feel brave- I feel awful. What if I have to live in this kind of pain forever? What if the surgery makes me worse? What if something goes terribly wrong? My physical condition these last 6 days has been so bad I barely have the energy to think about these questions. I went to work yesterday and loved the teaching aspect as much as ever, but I felt so sick from the pain and pain-induced nausea that I could barely do it. I'm home today trying to get myself back together. People ask why i still work-they don't understand that I still need my life. I need to feel useful, productive, needed. Right now I just work on getting through a day-and I am scared that it's time to face the fact that I may need to stop working.

I have found Chiari friends on facebook, chat group, websites, and books filled with lots of information and support, but none of that tells me what to do for me. In my life I am always driven by a desire to do whatever I set out to do well. I don't know how to "do" life with Chiari.

Cine MRI November 6th

2009-10-28T12:24:00.000-04:00

I will have a cine MRI at Emory on Friday, November 6th.

This is an image from a cine MRI-not mine

"Cine MRI (as in cinema) is taken the same way a traditional MRI is, with the addition of either a wristband or EKG leads on the patient's chest to measure the heart rate. Each time your heart beats, the cerebrospinal fluid is forced out of your brain, down toward the spine in response to the flow of blood that enters the brain with each beat. The MRI machine is equipped with an additional software package that allows the images to be put together, showing the flow of the cerebrospinal fluid (CSF) as it is moving." from the American Syringomyelia and Chiari Alliance Project, Inc.

After I receive the results, I will decide how soon to schedule the surgery and will schedule a pre-op appointment with my neurosurgeon. If you read my blog, you'll be the first to know the date.

This is scary stuff, and I understand that some friends don't know what to say, so they choose not to say anything. E-mailing or saying anything is better than doing nothing at all. The silence can feel lonely. Years of pain and endless doctors visits and procedures toughens you. As a chiari friend told me, the recovery is temporary and then my life can go on.

It's funny that brain surgery is starting to sound good.

2009-10-21T18:41:00.006-04:00

A brain MRI

This image shows a mask with more air holes than I had. Imagine being screwed into this and then inserted deep into the canal of the MRI machine. Then slide out briefly for the contrast dye to be inserted into your IV and you get to repeat the whole process again. My last one took 90 minutes. It is not for the claustrophobic.

It is much harder for me to organize my thoughts these days so I am not sure if I will be able to explain this well. I LOVE my neurosurgeon and feel that I accomplished my main goals. Even his nurse and student doctor fellow was well informed about Chiari. This does not sound like a big deal-but sadly many people with this brain condition spend a long time trying to find a doctor who knows what chiari is and how to treat it. The doctor even drew a diagram of my brain stem, low lying cerebellar tonsils, foramen magnum and what the incision would look like. (He also confirmed what I figured out myself- I do NOT have Trigeminal Neuralgia. I just have a badly informed neurologist.)

I will need yet another MRI, but this will be the first one at this particular hospital and the first cine-MRI. (Pronounced sin E) I haven't had one for 6 months and this type of MRI will give more detailed information about how impaired my cerebral spinal fluid is. It is not a perfect diagnostic test, but it gives helpful information.

Here are the highlights from the visit in no particular order:

-no syrinx which is good news. Syringomyelia leads to paralysis.

-significant low lying cerebellar tonsil herniation which does not always translate to stronger symptoms. In this condition the size is not a predictor of the severity of the condition. It is simply a fact.

-I now have some weakening of my left side

-Some of my symptoms are caused by CM, but he offers no guarantee that all of my symptoms will go away after surgery. Those symptoms that remain are the next clue in what else might be ailing me.

-The only treatment available is surgery, and he thinks that is the course I should take. Unless something new or different shows up on the cine MRI, when to do surgery is based on how much longer I can withstand the pain and other symptoms. I would prefer to not have to make the decision. It's not a win-win situation. If you do the surgery now and you improve a lot you wonder what you waited for. If you wait and suffer, slipping farther and farther out of an active life, and then have surgery you then wonder what you waited for if you get better and wish you had waited longer if you get worse.

-This surgeon had a patient who is a trombonist with similar issues with severe pain when breathing into her trombone as I have when singing. After decompression surgery she can now play pain free.

-Decompression surgery (according to this doctor) is the most painful of brain surgeries as he has to cut the muscles apart. In surgeries that involve only cutting the skull there is no pain as the skull can't send pain signals.

I included a description of the first part of the surgery, but did not show all of it as it is too graphic. If this type of thing fascinates you, check out this link:http://depts.washington.edu/neurosur/chiari/chiari_treatment.htm

Next step: Neurosurgeon

2009-10-12T11:55:00.000-04:00

I have done the research and made the decision to see a neurosurgeon in Atlanta. I discovered it is an important decision, as once a brain surgeon operates on you, most other surgeons do not want to touch your head. Sounds like professional courtesy or an unwritten rule.
My appointment will be on Wednesday, October 21st at 2:00 p.m.

Websites I found helpful: http://www.chiariansunite.org/
http://www.chiaripeople.org/disease_information.php

Shopping and learning

2009-10-01T21:24:00.010-04:00

Thank you, Mary, for the Conquer Chiari book. It's my favorite so far.

Thank you, Judy, for the Tempur-pedic pillow and pillow cases. My head feels better after only one week.

I treated myself to new sneakers based on advice from one web site that recommends New balance cross trainers. This picture shows my comfortable new shoes. I bought the neck pillow to try to make driving more comfortable. I like the support and feel of this pillow.

After lots of research and advice from two neurologists whose opinion I respect, I will be turning to a neurosurgeon in Atlanta who specializes in Chiari malformation and is a highly skilled brain surgeon. I have e-mailed him (as I have a connection) in the hopes of streamlining the wait for an appointment.

There is a lot more information out there than I expected. Check out my new list of blog links written by people with Chiari. Most people who blog have had the decompression surgery. I'd love to hear from more people living with their symptoms without undergoing surgery. Every book and site you turn to has an extremely long list of symptoms. Thankfully I don't have them all. I have had a cold and cough for a week which is causing my symptoms to flare up.

Symptoms List

The list below attempts to put symptoms in the order of importance but, it is difficult to say with certainty which symptoms are more common than others. There have been no formal or controlled studies of the percentages of patients that suffer from each symptom. In addition, symptoms may differ from patient to patient depending on where pressure is exerted (i.e. whether tonsillar descent is causing pressure on the brainstem or not, whether syrinx exists, etc).
In general, people without herniation may not suffer symptoms associated with brainstem compression but, rather, with lack of CSF flow and raised ICP. These symptoms tend to mirror those of PTC and include some of the ones listed below.
Headache (esp. if daily or at lower back of head)
Painful tension in neck
Fatigue
Migraines
Dizziness
Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus
Tingling / numbness in the extremeties
General imbalance / clumsiness
Memory loss
Restricted movement
Intolerance to bright light / difficulty adjusting to light change
Vertigo from position change or sudden standing
Difficulty walking on uneven ground / feeling ground under feet
Poor / degraded motor skills
Difficulty driving
Difficulty negotiating steps
Pressure / pain in the neck
Pressure / pain behind the eyes (soreness in the eyeballs)
Back pain
Neck spasms
Insomnia
Decreased sensation to touch in extremeties
Sore throat
Spontaneous vertigo
Poor blood circulation / cold hands & feet
Sinus / mucous problems
Decreased muscle tone
Nausea
Difficulty reading / focusing on text
Burning sensation in extremeties / shoulder blades
Menstrual problems / severe cramping during period
Pressure / tightness in chest
Frequent urination
Dehydration / excessive thirst
Electric like burning sensations
Dizziness
Dry skin and lips
(from ChiariOne)

it's not brain surgery-or is it?

2009-09-16T11:47:00.006-04:00

Arnold Chiari Malformation link

It's a good sign that I still have a sense of humor!

.....

one week later and I have a lot on my mind. This post might take the form of my rambling thoughts on the past week
My symptoms have not changed-merely the name for them.
Remnants of disappointment linger as I grapple with the idea that what I have is not fixable and will not go away.
Relief that I will not die as a result of this condition.
Fear- it looks like there are some things I can do ( and things I should not do) that can help keep the symptoms manageable
Fear- the only option that might help with the symptoms is brain surgery. Did not see this one coming.
Exhaustion- I have never felt this tired.
Curiosity-Chiari Malformation is a rare condition, but there are many web sites and hospitals (in other states) that specialize in CM. If you're not squeamish there are videos on you tube of the operations performed to help with CM symptoms. I'm not ready to watch yet.
Oxygen- my neurologist told me it is very expensive, but my insurance is paying for it. It's too soon to tell if it is helping.
Melatonin-seems to help with getting a deeper sleep-so why am I so tired?
It seems that I have joined a group that calls themselves Chiarians. Sounds like an exclusive club.

The top ten list for Chiarians

(These are suggestions from the World Arnold Chiari Malformation Association)

relax and avoid stress and noise- I'm a music teacher with 2 teenagers. Are you kidding?
don't lift heavy objects or weights, bend down, sneeze, cough, or do anything that could cause swelling in your neck.
sleep 8 hours, use a tempur-pedic pillow and elevate your head board
walk and stay lean
sit in soft recliners with foot rests
limit driving
use cold compresses on your head and neck
wear highly cushioned cross trainer sneakers
do cross word puzzles, cards, word games to help with short term memory retention ( I got this one!)
Avoid chiropractors, but continue acupuncture

I am researching and seeking opinions on where to go next. I will probably have to travel as Atlanta does not have a center or hospital that specializes in CM. I have a lead on a "wise neurosurgeon" who will proceed with caution. Sounds good.

Thanks for reading my posts and for being with me on this journey.

Chiari Malformation and Trigeminal Neuralgia?

2009-09-09T15:12:00.013-04:00

I have new conditions to explore after my visit to my neurologist today. My MRI was read by a cardiologist at the hospital who diagnosed the artifact in my neck as Chiari Malformation which is also known as low lying cerebellar tonsils. I did some research and have included a definition and pictures:

"Chiari malformation is a rare abnormality at the base of the brain that results in brain tissue extending into the spinal canal. The condition may be congenital or may develop as the skull and brain grow." "In normal anatomy, the cerebellar tonsils are located just above this line called the foramen magnum. But in an individual with Chiari, the tonsils hang below the line (herniate) into the spinal canal. The degree to which the tonsils extend can vary tremendously."

It could be the cause of my hand pain as well as my head and eye pain and dizzyness. The surgery isn't a realistic option as my doctor said it often leaves you worse than you were before surgery. He thinks that my ice pick burning head pain, eye socket pain and neck/face/head numbness is due to trigeminal neuralgia. Here's a definition for that condition:

"TN (Trigeminal Neuralgia) is a disorder of the fifth cranial (trigeminal) nerve that causes episodes of intense, stabbing, electric shock-like pain in the areas of the face where the branches of the nerve are distributed-lips, eyes, nose, scalp, forehead, upper jaw and lower jaw. A less common form of the disorder called "atypical Trigeminal Neuralgia" may cause less intense, constant, dull burning or aching pain, sometimes with occasional electric shock-like stabs. Both forms of the disroder most often affect one side of the face. It is not fatal, but is universally considered to be the most painful affliction known to medical practice. By many it's called the suicide disease."

So the neurologist says I am at the end of the diagnostic process. There are no more tests he would perform that would give any different information. What he can do is treat my symptoms. With no knowledge of these conditions he asked me how I would like to proceed. To give him credit, I think this was his attempt to show a better "bedside manner" in front of his medical intern-or perhaps on my last two visits he was having a bad day. He sees an enormous amount of patients in a short period of time. How do you answer the question "How do you want to proceed?" when you don't know your options? I told him I was not the kind of patient that needed him to prescribe medication or surgery in order to feel that he had met my needs, and that I was glad to not be facing a degenerative disease such as ALS, but that I was still unsure of what to do in order to improve my quality of life. He gave me several options and I chose the least invasive. I am going to take melatonin which might hold off the head pain and oxygen which I can use when I get a painful attack. For now I am still taking Gabapentan which he says helps with trigeminal neuralgia and the nerve pain in my hand.

If you know anything about these conditions, please let me know. I'm curious to see what happens when I try the oxygen.

Perspective

2009-08-23T21:37:00.006-04:00

"Whether we are feeling happy or unhappy at any given moment often has very little to do with our absolute conditions but, rather it is a function of how we perceive our situation, how satisfied we are with what we have."

Dalai Lama

Chronic pain tends to cause frequent mood changes and fleeting moments of joy. I love how this quote frames this for me and allows me to remain engaged in a life with happiness.

Time to go back to school. This is the third week of school for my own children and my first week of teaching students. I feel calm and ready which makes me doubt myself. I'm scared that there might be things I can't do, or the exhaustion will be overwhelming. Between the medication and readjustment to being "on" for 45 minutes of every hour I'm going to be tired. Just working in my classroom last week left me feeling tired enough to take naps every afternoon. Fretting too long on things that you can't possibly predict or do much to avoid won't help me live my life well.

I'm reading The Art of Happiness which is a wonderful book cowritten by the Dalai Lama and Howard Cutler. The quote at the beginning of this post is from this book.

I took these pictures of the sunsets on Cape San Blas, Florida the first week of August which is always my happiest week of the year.

On some posts I spend little or no time discussing my physical condition. I do this intentionally to shift the focus from that which I can do little to change to the aspects of my life that I can change. Think of the opening quote.............

I realized that I have out of town friends reading this blog who do not have a way to check in with me or at least see how I'm moving around. Here's the latest-

Physical update: Next neurologist appointment is Sept. 9th. I am wondering about the connection to the 5 days of erythromycin I just finished taking (to ensure I did not contract the whooping cough after possible exposure) and the remarkably lessening of pain in my fingers. They are less numb, move more fluidly and do not burn as if on fire. My left eye is watering but not burning and aching. Coincidence or a clue? It will be interesting to pay attention to how the pain changes.

I'm singing again!

2009-07-27T16:40:00.005-04:00

My goal for the summer was to find the part of me buried under the pain. Chronic pain has a tendency to take over every aspect of your life, and I don't want to let it do that to me. I joined a summer chorus and was reminded of how much joy and strength I gain from singing with other people. When I signed up for voice lessons I was not sure if the pain would make it too difficult to sing. I surprised myself and my teacher, Kate, with how much strength I still had. I auditioned last Sunday and made it into a small choir that sings mostly accappella concerts. With an orchestra we'll start off with the Brahms' Requiem. Brahms' is one of my favorite composers and this is a beautiful piece. All of this makes me feel alive and less like I am damaged. The trick now is to maintain this feeling through the school year.

This Saturday we are heading to Cape San Blas for our annual family reunion with my husband's family. It is always the highlight of my year. A week of the ocean, games, reading, walking and sharing great meals. I don't wear shoes the entire week! The picture is from the trip last year when we went to St. George Island.

***************************************************

School starts for my kids on August 10th and I'm back for preplanning on August 17th with classes starting on the 25th. With the Summer Singers I have concerts on the 16th and 17th where we will sing Beethoven's 9th Symphony with an orchestra for the first concert and a concert of spirituals, secular and sacred songs on the second night. My next appointment with my neurologist is September 9th, so until then I am aiming straight ahead and not looking back.

a balancing act

2009-07-13T23:16:00.003-04:00

We hiked to Sand Beach in the Rocky Mountains. It was a 9 mile hike with a 2,000 foot elevation increase. It felt like a major accomplishment for me after struggling to walk a few blocks. After climbing over snow we crossed the sand to get to this beach. It was exhilarating.

"The highest reward for man's toil, is not what he gets for it, but what he becomes by it." John Ruskin

love

As the pain returns, I am holding on strongly to all I have gained and learned about myself this spring. Most of all I want to move forward regardless of how my pain is trying to drag me back to where I was several weeks ago.

life

So many things have made me smile lately. Do I have more to smile about, or am I more watchful and aware of moments worth enjoying?

JOY!

singing in a choir, going to concerts and recitals, taking pictures and developing them in the dark room, voice lessons, cooking, good meals with friends and good meals brought to me by friends, random acts of kindness, hiking and wonderful friends in Colorado, gardening and eating veggies I grew from seeds, walks, rare and kind gestures from my teenage daughter, word games, books that make me think and cry, cleaning out mountains of things no longer useful for our lives, the songs of birds heard from my back porch, laughing..............

Please consider sharing what makes you smile. I'd love to know and share the list in my next blog entry. E-mail me if you aren't able to leave a comment.

July

2009-07-03T08:28:00.005-04:00

This is a picture from our trip this June to our friends in Estes Park. They see this view from their bedroom and deck.

My daughter took this rainbow picture in Morrison, Colorado after having dinner with Jordan, an old friend from Hyde Park. It seems like a good metaphor for my summer of healing.

I am cooking and making bread again, which is a very good sign. I am feeling happy to wake up each day. My hand is not recovered, but the rest of me is doing so well that I can handle it. Although I am still taking medication, each week I try to decrease the dosage.

I am taking voice lessons, singing in a summer choir (with Elizabeth S.), taking lots of walks, working in my garden and continuing my black and white photography and darkroom class at Callenwolde Art Center.

Once in awhile I feel a glimmer of fear that these feelings could slide away and become a far away memory, but I try to push those feelings away quickly.
I have no long term plans beyond feeling good and seeing what comes with time. It has been amazing to reconnect with old friends and for so many of my Atlanta friends and colleagues to reach out to me. If you are an out of town friend, please send me e-mail messages about your lives, and challenge me to word games on facebook- and if you are an Atlanta friend, I am ready to take walks and participate in life again.

recovery or remission? who cares!

2009-06-14T14:05:00.002-04:00

I feel like a new person and have newfound appreciation for my body. Although my hand pain lingers, it is more manageable and I am walking everywhere. In the back of my mind I wonder whether this mysterious ailment will eventually leave forever or return at some point in the future. Most of the time I keep those thoughts banished to a far away place.

qqqqqqqqqqqqqqq

On June 16th we head off to Estes Park, Colorado to visit good friends. This picture shows the exact view of the Rocky Mountains that I will have from their deck. I took the picture on our visit last June. It's especially nice that I will be able to take hikes now that my foot and leg are back in use. I'll post again in July.

endings and beginnings

2009-06-03T10:26:00.009-04:00

June 5th- the last day of teaching.

(6/7 ADDITION: Please feel free to ask about my pain and/or treatments when you have questions-just know that I am working very hard not to "wear" the pain as a layer on top of me. To do this, it helps to have conversations about lots of topics in addition to medical topics. I'm still struggling on and off with hand pain, but am doing everything I can to not allow it to stop me from doing the things I love.)

I learned so many things about myself and my friends in my journey to make it to the end of school. Thank you to everyone for reading this, thinking about me, sending cards, sending food, spending time with me, stepping in for the musical and instrumental parts I had trouble with, and putting things in my path that would start the healing process.

Yesterday (thanks to a wonderfully generous friend), I went to the ZenShin healing center. I learned about Traditional Chinese Medicine and the way it looks at illness and healing. Most importantly I am going to take his advice and begin to use my hand again. I am trying a natural anti-inflammatory and hope to reduce my Gabapentan yet again. The second piece is that to heal I must act healthy. My spirit needs a chance to release the pain and depression that travels along with chronic pain. My search for a label or name for this is not helping me recover.

When you write to me or talk to me, start the conversation with new topics. Tell me what is going on in your life. And most importantly, never feel that you shouldn't share the pains and problems of your life. I don't make comparisons and I have plenty of compassion left to share.

coping

2009-05-24T16:12:00.002-04:00

I haven't felt compelled to write this week, as there has not been anything new to report.

This has been a week where I have struggled with the emotional part of chronic pain. I work very hard and do many things to keep depression at bay, but it reduces my spirit and takes vigilance.

yyyyy

Over a 10 day period I managed to reduce the 300mg gabapentin from 3x a day to 1x a day. This reduced the extreme exhaustion the pill brings and allowed me better access of language.

My foot and leg pain has gone down considerably which has allowed me to take some wonderful walks and to regain a sense of being an active person. When the pain returns (which happens 5-10 times a day) I am able to manage with a cane and get where I need to go. At times it feels as if all the bones in my foot are shattered.

My hand pain changes constantly throughout the day and night and has increased to the point where I would like to have my hand removed. That's mostly a joke. I use a sling to hold my hand up which helps with the swelling and fights back against the sensitivity to touch and movement.

So at the moment my only option was to increase the medication. I am back to 2oomg in the morning and 300mg at night. The good news is I am no longer awake for 3-4 hours every night, the bad news is I have to give up some of my brain function-and despite the medication, I am still in some pretty serious pain off and on 24 hours a day.

yyyy

I don't know what the next step is. I keep hoping it will magically appear in front of me with a complete set of instructions, even though realistically I know this is impossible. I am going to rebuild my sense of self, which needs separation from the painful self and refill my energy stores. When I have a plan I'll share it here.

Thanks for reading and thanks for all of you who have been keeping me in your thoughts.

on vacation

2009-05-17T07:28:00.005-04:00

maybe labels or a diagnosis isn't that important at this exact moment in time?

I would like to take a "vacation" from being a patient, fighting to figure it out, and spending almost every moment to remain and appear as if I am okay.

I have been going in and out of the stages of grief-but have not spent much time in denial. Denial seems like a good place to be-at least until school ends on June 5th.

If you want to do something to help, try to treat me like the old me-the one that wants to live without wearing the costume of illness and pain. I'm working hard to be happy and feel joy. Leaving the house and going out to see and do things is very important-even when I don't feel so great.It's time for me to be me-whatever that turns out to be.

"We are having a procedure."

2009-05-14T16:53:00.008-04:00

When doctors say "we are having a procedure" they don't really mean that they will be partaking in the electrical jolts and needles burrowed into muscles, do they?

I went back to the Clinic today and had another nerve conduction test and then an EMG test.

The doctor looked over my blood work and previous nerve conduction and EMG tests done exactly a month ago. The radiologist has not yet looked at my MRI, so there was no information on the herniated discs or unknown item in my neck.

The doctor is now using the word curious in addition to puzzle when describing his inability to provide a complete diagnosis. Here's what he thinks now: The EMG showed muscle weakness in my foot/leg which he said showed a connection to my back problems in the L5 and L4 discs and will continue to be a chronic problem. His name for it-radiculopathy. Off and on throughout the day, my foot and arch feels as if all the bones inside are broken. The hand, arm and wrist which have burning, tingling and numbness is not related to the back and is the part that he feels is curious. His guess is that I have a type of neuropathy that is not showing up on the EMG at this point. He is certain it is not rheumatoid arthritis and is nerve based.

For both of these problems he says he can try to manage the symptoms, but not fix the problem. Gabapentan, the drug I am already taking, is the correct medication for whatever ails me, but I have to play with the dosage a bit more. It is not a pain reliever in the regular sense. It takes days to build up in my system and then reduces some of the burning pain as well as my mental capacity and energy level. And then the hardest part-we wait to see if I get better or worse or just plain stay the same. I don't see him again until September 9th, unless I get worse.

I am sad and discouraged, but ready to re-frame my vision of how to live in this level of pain and reduced mobility since I don't seem to have a choice at the moment. Now I need time to process and figure out the next step.

LETTER TO PEOPLE WITHOUT CHRONIC PAIN:

2009-05-11T11:53:00.003-04:00

I found this on the Neuropathy Association web site bulletin board. It was posted by Bob B (not my father Bob B), and I have made changes to fit my own situation.

Having chronic pain means many things change, and a lot of them are invisible.

Some people do not understand chronic pain and its effects.

In the spirit of informing those who wish to understand,

these are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being.

I have to spend most of my day in considerable pain and exhaustion, and sometimes

I probably don't seem like much fun to be with, but I'm still me-- stuck inside this body.

I still worry about school, my family, my friends, and most of the time I'd still like to hear you talk about yours, too.

Please understand the difference between "happy" and "healthy". When you've got the flu,

you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time.

In fact, I work hard at not being miserable. So, if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please don't say, "Oh, you're sounding better!" or "But you look so healthy!¨

I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you're welcome.

I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain.

Please repeat the above paragraph substituting, "sitting", "walking", "thinking", concentrating,

"being sociable" and so on ... it applies to everything. That's what chronic pain does to you.

Please understand that chronic pain is variable. It's quite possible that

one day I am able to walk to the park and back, while the next day I'll have trouble getting to the

next room. Please don't say, "But you did it before!" or "Oh, come on,

I know you can do this!¨ If you want me to do something, then ask if I can.

In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens,

please do not take it personally. If you are able, please try to always remember how very lucky you are--to be physically able to do all of the things that you can do.

confused with questions that have no answers

2009-05-07T20:15:00.005-04:00

Today was the best day I have had in 2 months. I did not need a cane, my hand moves more freely and it is the only body part that hurts. Not sure if it was the acupuncture, the weather, an improvement in my mysterious ailment, or.....

So when you have long term pain AND an unknown affliction, how are you supposed to feel about a doctor who tells you he wants to wait and see if you get better or worse- and if today was such a good day, can I expect tomorrow and the day after to be good, too? Is this the beginning of the "getting better" or remission that I get to experience before it all descends on me again at some unknown point in my future?

The struggle to separate yourself FROM the pain becomes so much more important. Most days are judged by my mobility and pain rather than my accomplishments and feelings. Today I desperately wanted to shed this suit of pain and lack of use of my left side as if it were a zippered suit I could step out of and discard.

p.s. This was a brief reprieve as the pain returned the next day. With less shaking in my leg I am pushing myself to walk more. I walked to work on Friday for the second time in 2 months. A far cry from my daily round trip journeys, but a walk nonetheless!

an artifact in my neck

2009-05-04T14:32:00.004-04:00

I am back from my appointment with my new neurologist at the Clinic. I had forgotten this is a long process and there would be no answers today. He was unable to rule anything out, and mentioned a few new nerve disorders that are possibilities. I didn't even write them down because I am tired of doing internet research. I'm ready to adopt a wait and see attitude.

Here's what I know from the visit today. My word retrieval issues I'm having are due to the neurontin/gabapentan medication that I am now taking 3X a day. In the doctor's view, the MRI pictures of my brain look good and he did not see anything that should not have been there. On the cervical pictures from the MRI he saw two interesting things. It appears I have 2-3 herniated discs in the T 2-4 region of my neck. These may or may not be contributing to my pain and numbness issues. He also showed me a 2 inch strip on the side of the neck (separate from the discs) which he is calling an artifact since he did not know what it is. He will send the films down to a radiologist who can give us more information. An artifact is a funny word that I realize is being used as a medical term, but it sounds as if someone went on an expedition in my body and left something behind.

So.......I have to have another EMG test on May 14th (the one I described earlier as knitting needles jabbed into muscles with electrical jolts for added excitement) I will bring my records from the last EMG and blood work results and at that point I might get more information from the doctor. Unless something pops up in one of these tests that must be addressed quickly, he wants to watch me and wait to see if I improve before proceeding. That makes it feel like a bad science experiment. He feels that guessing at a treatment would be worse than waiting. I am a puzzle to him.

I will say that this was the first public place I have been where no one looked at me funny because I was using a cane. So many people also had canes, and wheel chairs and oxygen, etc. My daughter thought I was imagining the strange stares, but when we went shopping this weekend she was amazed at the looks I was given. It's never easy to know what to do when you see someone in a wheelchair, with a cane or anything else out of the "ordinary." After my experience I think it best to try to see the person and look at them the way you do any person crossing your path. I still have a face, and eyes and a smile (usually) and the cane isn't a reflection of my spirit.

The MRI is postponed

2009-04-30T07:52:00.001-04:00

The MRI is postponed until sometime next week...

The MRI machine at Emory broke, so my MRI was rescheduled for Friday at a different medical center. After checking with my doctor friends, it was clear that this MRI machine was not what I needed. So the MRI is postponed, but I still have the doctor visit on Monday. All this means is it will take longer for diagnosis, but I'm not going anywhere and neither is this "condition!"

My facebook status says that I feel like a jigsaw puzzle. Each day a new "piece" of my body begins to burn and go numb. They seem to connect like pieces in a puzzle. I remember sitting with my mother, hunched over a card table with a springbok puzzle spread across the surface. We flipped the pieces until all faced up, and then began to work on the borders. There was a sense of satisfaction when all the pieces came together. This is my metaphor.

the next step

2009-04-27T16:44:00.005-04:00

Monday, May 4th an appointment with a new neurologist.

Exhaustion is setting in, but I will make it to May Day which is this Friday at 8:45 in the gulch.

My students are doing an amazing job, especially the recorder players who took on the job of learning the parts I can no longer play. My husband is coming to play violin to help hold it all together.

THE MAGIC BOX

The entire family is grateful for the meals that have been appearing magically in the cooler on our front porch. It is a tremendous help, and it takes a bit of the load off the family. We've named the cooler the magic box.

and so it goes..

2009-04-26T12:00:00.000-04:00

I'm working on paperwork today to get the insurance straightened out. I have Aetna insurance through my husband's job and they are usually pretty reasonable about approving procedures. Tomorrow I'll teach a half day of school. I have to go to both centers where I've had my last 2 MRIs and get them on discs to bring to my new doctor. Then I have an acupuncture appointment. :)

Last night my left eye began to bother me and today the eyelid goes into spasms about every 30 minutes. Only a little burning pain in the side of the eye, and it appears to be black and blue. The top of my left wrist is also now affected. Whatever this thing is that's attacking my body, it only seems to like the left side of my body.

I had a wonderful time with friends last night, and the weather is beautiful today. I am feeling

calm.

Where do I go from here?

2009-04-25T17:08:00.002-04:00

APRIL 24th

In the meantime, I continue to lose the feeling in more of my body. In early April I lost the feeling in my left pinky with the middle finger soon following. By mid April my entire left hand and palm alternate between tingling, burning and numbness 24 hours a day. I had to remove my rings and watch as my hand and arm are so swollen they don't fit-despite the fact that I have lost 6 pounds in the past month. I now have trouble at times moving my fingers at all. They seem frozen in position. Parts of my hand turn blue and then feel so tight I imagine my hand exploding. I "jokingly" beg my husband to cut my hand off when it burns and feels as if sharp knives are slicing my finger tips. I continue to take Neurotin and keep ice on my hand while I am teaching.

I have had to give up playing the piano, guitar, drums and recorder which leaves me feeling a sense of loss at school and at home. My arm is beginning to show signs of the dreaded burning.

In the meantime I have continued to have acupuncture, massage and therapy to help hold it all together. Sleep is difficult and sometimes impossible.

MRI #5

2009-04-25T16:53:00.000-04:00

APRIL 20th

Is it Multiple Sclerosis??

Luckily I am not claustrophobic, but I cannot imagine how difficult an MRI would be if I were.

This time I had the added treat of an hour and a half long test, a mask the technician called the Hannibal Lecter mask that was screwed onto my face, an iv jammed into my arm and a black, plastic panic ball they placed in my hand. My eyes stayed closed and it was tolerable, especially because I believed it would result in a name for what was causing me to lose function in my left side.

APRIL 22nd

The neurologist called to tell me the blood work was within normal range and there were no lesions on my brain. Nothing on my neck showed signs of arthritis, so that must be confined to my lower back. Funny to say that it was devastating to not have a diagnosis or ms. Not having a plan for reducing my pain and increasing my mobility was horrible. The doctor said it must not be a nerve problem and I should find a rheumatologist.

Neurologist

2009-04-25T16:45:00.001-04:00

APRIL 1, 2009

April Fool's Day is one of my least favorite holidays. I am usually an extremely patient person with children, but I find it takes enormous effort to continuously react to the parade of April Fool's jokes. I found it ironic that I would miss half of my classes to meet with a neurologist. I thought perhaps I would wake up and find this had all been a joke.

The initial appointment was a rundown of the symptoms, diagnoses, tests of reflexes and responses, etc. April 14th was a return visit for a nerve conduction test and EMG. The latter can best be described as knitting needles jammed into muscles in every part of your body with brief electrical shocks. Unpleasant and unproductive. I was sent on my way with a prescription for neurontin and orders for blood work and another MRI. In her parting thoughts she was not able to conceal her excitement that she had figured out my diagnosis which she felt was multiple sclerosis. That was stunning.

A different path

2009-04-25T16:29:00.001-04:00

March 16th

January and February were tough. I was looking forward to warmer weather and a reprieve from pain. I had no idea my path was about to change drastically.

I walk to and from work every day and it is the most enjoyable 20 minutes of my day. It's usually a chance for me to catch up on podcasts on my ipod. I get to smell and hear and see things you miss when trapped inside a car. I miss these walks.

I began to notice myself stumbling on the ground as my left foot smacked the concrete. It was a bit embarrassing at first as it left me feeling clumsy and awkward.
The ball of my foot began to tingle then burn and finally go numb. Next the side of my thigh had a continuous line of burning pain running from my hip to my knee. On March 16th I knew it was time to call the doctor. March 20th our family physician tested my foot and leg and found them to be weakened. The next step was an MRI (my fourth) of my lower back and leg on March 23rd which resulted in a diagnosis of Lumbar Degenerative Disc Disease and spondylosis with facet arthopathy. Basically complex words for arthritis of the spine.

Finally something concrete from an MRI-or so I thought. Next step: a neurologist.

Let's start at the very beginning?

2009-04-25T15:39:00.000-04:00

July 4, 2002

a date that is impossible to forget.

During a visit to my husband's family in Annandale, Virginia, I tried to sit at the dinner table, but searing pain ripped across my lower back. Startled, I jumped out of the chair. By night time the pain was hard to comprehend. This was worse than the births of my children. The pain increased and spread to the point that I would have preferred unconsciousness to this level of torture. The urgent care center had no idea what to do with me, and sent me home with medicine for a bladder infection which I infamously threw up all over my mother-in-law's new white carpet. It was not removable.

Eventually the diagnosis of kidney stones evolved. The pain never left for long and I have spent the past 7 years going to a renal scan, X rays, cat scans, MRIs, physical therapy, chiropractors, spine doctors, acupuncture, massage therapists, naturopaths, having spine injections, radiofrequency nerve burning, and several dozen bottles of pills (none of which helped the pain).

How did I go from an active runner, skater, and lover of life to a tense and hunched person in pain?

Acupuncture has been the most helpful piece of helping me access a way to live with pain, and until 6 weeks ago, I was "managing" to live well with pain.