Forced Sabbatical

Cora here,
back after several months of being very... much... away.   The last post was in May of 2011 and that seems like lifetimes ago.  I was going along with life- living each day in what I thought was the "moment", as those of us with chronic pain learn to do so well.  Doing the things that keep me balanced- tai chi, walks in nature, eating healthy, nurturing myself and family and taking care of the things you have to take care of with pain as your companion.  Living a rearranged but full life, keeping it simple but also full of challenge.


In Aug of 2011, life changed again for us, in one of those proverbial "instants" we hear about. I am including a link to a post about what happened.  I am going to tell you that for now, there is a very happy ending.  The ending says that right now, Keith is cancer free as in NED. No. Evidence of. Disease.


Here is the beginning of the story and why I have been away from blogging at the haiku.  I'm happy to be back and I think there are things I want to write about since cancer barged into our life with pain.  Dare I say it was a very daring move on cancer's part, but you know that truth: Cancer doesn't care.  Cancer doesn't discriminate.  Cancer doesn't pencil you in. 


I originally started a blog about the cancer, but I am going to continue that writing in my new blog called Universe Willing.  So, I'll be writing between Universe Willing and Vagina Haiku.  In the meantime, here is Chapter 1 of that crazy cancer episode that stole six months of our life, and a slice of our sanity.  It offered up more lessons learned.  I'm a little tired of being in this kind of real life boot camp of a classroom,  but as they often say "It is what it Is".  Introducing my first post- Cora and the Cancer that Came to visit Keith.  I'll be cross posting between my two blogs. It's good to be back and I hope and pray that there are no big interruptions on the horizon.   Universe Willing. 
Peace, Healing, Humor,


http://cancerhaiku.blogspot.com/2011/12/in-instant.html

Ted Talk on Chronic Pain

A Wonderful 8 minute talk on chronic pain as a disease in itself.  Please share with those whom you wish to educate on the disease of chronic pain. 

http://www.ted.com/talks/lang/eng/elliot_krane_the_mystery_of_chronic_pain.html

Lady Creaky

There is a song in my head called Lady Creaky.  I changed the words and sing it to the tune of Lady Madonna.  When I wake up each morning, singing Lady Creaky, my bones feel relentlessly stiff, but somehow the humorous lyrics allow me to shuffle off to the bathroom and get the hot soothing water going to fill up the tub.  As I soak, Lady Creaky leaves for a time, a nag in the shadow of my day.  The warm nurturing water un-creaks me, lubricates me.

This is the time of the day that I feel temporarily old. This is a fragile hour.  I coach myself out of my dusty state of mind, and pursue the ritual of the day. I avoid the urge to connect with information. I engage in the ritual of feeding my dog Cowboy, who patiently waits by his food dish.  His patience inspires me. He is just shy of seven years old, and he shows signs of living with his own creakiness.  We're in it together.

I surround myself in tokens of inspiration. My home looks like a gallery of co-exist propaganda.  It happened insidiously; a few Buddhist prayer flags here and there, Quan Yin figures, medicine Buddhas, and chimes and bells everywhere.  We just added another Mezuzah to the doorway.  My collection of Dios Los Muertos figures grows.  My fireplace mantel has turned into a shrine, that contains gems of inspiration and memories. Mars and Tapper, two old Border Collies rest in jars at the center.  Close friends and family have built that shrine with me, and although crowded, I find little spots for more tokens of strength. It's a little out of control these days, as the bells and Buddhas are also outdoors now.  I laugh as my devout atheism is surrounded by icons.  'Just in case."   Dawn tells me it's an "Aquarian thing", the urge to hang shit around the house.

I know Lady Creaky will be back for another visit. I don't believe in the "war vocabulary" when it comes to chronic pain, or any other disease, or life.  It's more my nature these days to hang out with Lady Creaky part of the day and then I ask her to back off a bit. Her presence might explain other choices these days.  Technology fasts. Long meditations, tai chi and hikes.  Very girlie clothes- embroidered t-shirts, and pink Dansko clogs. Which reminds me, have you seen the lavender Chuck Purcell sneakers this spring?  To die for.

http://www.converse.com/?CSID=397#/products/shoes/jackpurcell/121574

Peace, healing, humor,
Cora


Feed the fish. Feed the fish.  Please.

" The Pain Passes, the Beauty Remains"

When I woke up this morning, I felt the heaviness of the news around the world.  It seems a time of unusual anxiety, wars going viral, environmental catastrophes creating suffering of immense proportions.  I also feel the weight of my pain.  Pain that is on such a micro, individual level.  Ya, it's personal. I own it.  It affects other around me, no doubt, but I own it.  I feel it.  We're friends.  Today, being the first day of spring, I pushed a little harder, like the brand new violet crocus that exploded through melting snow and heavy mulch. I pulled the shades wide open, got the coffee going, and turned on my computer.  My opening page is a site called Happy News.  That is what I need to see first thing when I turn on my computer.  Will and Kate, the Happy News site says, they are asking wedding guests, all 1,900 of them to donate money to 26 charities they have selected. Well, that is good news.  I need that filter from the overwhelming disaster kind of news.

I check in with my companion, "pain" each day, just to see where we're at.  I make my assessment, take my medication, do a round of tai chi to balance my energy and get the chi flowing. Sometimes it is so intense, that I cry. The flow of energy connects me to my pain, to the pain of the universe, and to the beauty in my little world, and to the beauty that still reminds me that this planet gives us lots of second chances. 

 At the state park where I walk I find a new memorial bench.  The benches are parked like gravestones all along the trails. You can tell the old ones from the new.  The new benches have fresh, unweathered wood with shiny brass plaques. The older ones are gray and musty, sometimes splintered with missing bolts. Today, I am compelled to read the new ones.  I know someone died recently, and the honor of memorializing them with a bench in their favorite surroundings must be quite healing for those still here. The new brass plate has a quote by Renoir.  "The Pain Passes but the Beauty Remains."  I needed that quote to find me today.  I remember a bench from a few years back- the man who died was young and a long distance runner.  His shoes were left on the bench and people were invited to put on his shoes and take them for a run. I wonder if the shoes recognized that an old friend was taking them for a spin, or perhaps a curious stranger wanted to get to know this man through the countless miles he spent in such experienced shoes.  There was a box full of letters from friends, close family members, a very poignant one from a teen-aged daughter,  and a guy who took the shoes for a run.  It was there for all to read and to know this spirited person who likely ran mile after mile on the trails of the kettle morraine state forest.  After reading a few notes and contemplating the beat up shoes, I discovered this man was a generous soul, who managed to share his love of nature through a pair of ragged shoes and stories from loved ones left behind, and those just passing through.

I think that a lot these days.  Pain is with me, but together we are passing through. We're not missing the beauty.  Sometimes pain and beauty do just fine together.

Peace, Healing, Humor.
Cora

☀ spring has sprung, feed the baby fish please

Guest Author Karen W: Poem

Sitting in silence, intently gazing at the leaves at play in the breeze…

Nothing distracts her; her thoughts are like beacons that hold her mind in the steadiest of frames…

Where once she danced alone in the light of Sister moon, now she shares only cheeks covered in tears…

Do not disturb her, decisions of this nature need to be carefully and deeply considered…

Is there a reason to continue? After all Sister moon still shines…

But, time has passed and with it the hope of any happiness or fulfillment…

Loneliness, isolation, and the knowledge that this will likely never change give fuel to her fire, and she considers her possibilities…

Water? Fire? Ice? 

The choice will be made; the decision arrived at precisely when the moment is right…

But for now, she will consider the leaves playfully dancing in the setting sun…






Peace, Healing, Humor
Cora


fish karma......


❁ said the blue fish down
in the virtual sea, ask your
visitors to stop and feed me.
random acts of kindness go a long 
way, to brighten our spirits and others 
we may meet today. 

Every Disease has a Ribbon

Throughout my life I've been in many writing groups. I have read my share of memoir. I hear the echo of my writing instructors telling me that a good memoir is "brave and courageous." I think of Mary Karr's book, "The Liar's Club".  That was courageous.  And crazy.  Since I decided to blog, I have been thinking a lot about bravery.   And craziness.

I want to share my story for many reasons. Pelvic pain has changed my life. Anyone with a chronic disease knows that, as does their family and close friends.  I want to be honest, without being tabloid. I want to share information from my personal perspective and from my expertise as a nurse. I want to share those scary moments that I feel when I am alone with my thoughts, and let others with pelvic pain know they are not alone. I want you to know those thoughts are normal and understandable.

On my walk today, this phrase came to me. "Every disease has a ribbon."  I have worked with children with diabetes. There are walks for a diabetes cure and huge foundations to support research.  Almost every form of cancer has a month or day dedicated to awareness. Multiple Sclerosis has several fund raisers. There are organizations dedicated to studying rare diseases, but I don't think it includes pelvic pain. The list goes on and on.

 Pelvic pain just may be the "Rodney Dangerfield" of chronic diseases. It is poorly understood, and physicians in the logical specialties to treat pelvic pain- obstetrics/gynecology (OB-GYN) and urology have a very limited repertoire of treatments available. It seems to be a condition that is often met with a glazed over look from the doctor, and a condition that is very susceptible to getting "turfed."  "Turfed" is the term medical people use to pass another patient on to another specialty.  It is not uncommon for a patient to see twenty doctors or more, or go for several years until a proper diagnosis is made. In the mean-time, the emotional, physical and financial cost is great. 

I have many thoughts on why this occurs.  First of all, two-thirds of pelvic pain patients are women. Even in this day and age when much medical care is delivered by women, there is still a bias towards women and pain. Especially pelvic pain.  The majority of pelvic pain is not treated by a procedural intervention, and in our current medical climate, procedures bring in dollars. So pelvic pain patients require intensive cognitive time, but we don't bring in the bucks. Doctors simply don't know what to do with us.


I believe men suffer even more silently and they can go for years as well with mis-diagnoses.
Men may have even fewer resources than women when it comes to seeking help for pelvic and genital pain, and let's face it, they are probably less likely to confide in a buddy about this delicate problem. 


The few media shows that I have seen that featured pelvic pain focused exclusively on women and the sensational aspects of  sexual pain and dysfunction.  While that is a definite reality, what the media fails to outline, is how many patients have pain associated with sitting, simple daily activities, and have significant urinary and bowel disturbances. Who wants to hear about that ?   Most media attention has been generated by patient advocate groups like the NVA ( National Vulvodynia Association), so the grass-roots effort is starting to sprout. 


That is the good news about the Internet. It corrals people together to help each other find help.  There are a handful of doctors and physical therapists who are dedicated to treating pelvic pain and a few professional societies that support research and education. Unfortunately, it's just not enough.


I certainly don't have answers, but I do have questions.  I hope we get our ribbon soon.  But that brings up more questions, what color, what shape, circumcised , or not?


Peace, healing, humor,


Cora 


☂ my fish need food

Dear Pain...

.... Just be quiet now and then

Peace and Healing,

Cora

 ❤ Please feed the fish 

Forgive

Forgive Yourself

Forgive Others

Forgive Pain




**please feed my new fish below in the blue ocean

My Story

One thing I discovered since I developed pelvic floor dysfunction and pudendal neuralgia (PFD/PN) is that others who live with pelvic pain want to know the details of my story. That's how we learn about this unusual condition. Our stories connect us to this virtual waiting room filled with men and woman in pain. By sharing our own experiences we find out that we aren't crazy, that our pain is real with real physiologic causes.We discover that our pain can be isolating and unrelenting. But we also find out about treatments that might help us, physical therapists who are solely dedicated to treating pelvic pain, and some doctors with true expertise in the field of chronic pelvic pain. We discover too, a community of men and women who want to share their intimate stories with each other to make the journey a little less daunting and lonesome. There are friends out there you just don't know yet. But look around the links on this page and you will find friends, support and information.


Well, here is my story, and I'll be somewhere between brief and exhausting. My warning to you is that I am an RN but I'll be careful to not talk too much medical lingo.


If you've read other essays of mine, you've learned that I was very physically active. By age four, my father was strapping rubber galoshes to cable bindings on wooden skis. I remember running around with them on the fall grass, impatiently expecting our first snow.  I was hooked.  I developed a serious love for altitude and speed. Powder and moguls. Giant slalom and downhill racing. During college, a ski outing with the guys meant a challenge to a race at some point.  Often it would start with a bet " I can beat you down the mountain without making a single turn." That was enough to get me into high gear, and we were off.


Every now and then, the race was interrupted with a high speed crash, bumping, bouncing, sliding down the mountain and a forever lost ski. No problem, my body always absorbed the concussions of the bumps and speed. I felt like Mighty Mouse flying down those slopes and fortunately, I never sustained a serious injury.


I was attracted to the adrenaline sports. My other love was riding horses and wrangling with my burro and mini-mule. For years, I lived in the high desert and would take solo journeys for hours with my beautiful Arabian, Hudson.  My burro would tag along, stopping to graze on a wimpy little weed, and then ambush us when he discovered he was left behind. Those memories are poignant, and still make me laugh.


When I wasn't riding, I was hiking or running the mountain trails with my border collies. It was a life I was used to- a life of working as a pediatric nurse, creating a loving home with my husband, and an athletic and social life with my community.


Things abruptly changed four years ago. But that change was cooking; simmering for years and I had no clue. At the time, I was no longer working as a nurse. I had a successful in-home dog training business for four years. I loved the work. It was very similar to my work as a pediatric nurse. I taught families how to integrate their new pup into the household. I taught them the basic skills they needed and how to handle this active bundle of fur with razor sharp teeth. And just like we learn that dogs rarely bite "all of a sudden and for no reason", my pelvic pain "to be" was sending me tiny little messages for years, but the words were so faint and inconsistent, that I ignored them. They weren't interfering with my life at all.  Every now and then I had a little low back pain, and menstrual cramp pain that never resulted in a period. I chalked it up to being in my forties. Once in a while, my foot would go numb, "No big deal." I experienced some urinary urgency and frequency, but it was mild, and I assumed I was entering that era as well.  As a runner, I knew many women who "leaked" now and then.


Another activity that I loved, was cycling.  In 1985, I packed up my ten speed bike, flew over to Europe with some friends, and cycled all over  Europe for three months.  My body was finely tuned at that time, and I would ride hours a day without a worry.  Cycling, running, skiing and horses were a mainstay of my active lifestyle and certainly a big part of my identity.


In 2006, when my symptoms came on acutely, ( *A Pain to Explain) on that airplane ride, I was reminded of some strange symptoms that I was experiencing a few weeks prior.  My low back pain was getting more intense, and it hurt quite a bit when I was training dogs.  While cycling, I had a few episodes of numbness in my right leg, pain near my sit bones and an odd buzzing sensation in my crotch. The pain always resolved when my activity stopped, so again, I just didn't give it much thought. Once the pain reached critical, it came on  acutely and I was taken to the Emergency Room.


I was evaluated by a surgeon and upon exam he discovered that my pudendal nerve was very sore and sensitive. He thought that perhaps I had injured it from cycling and likely it would calm down. My symptoms were quite intense. I was unable to sit at all.   I had urinary urgency and frequency, rectal pain and total centralized pain.


I did not understand at all what was happening. Especially the symptoms of centralized pain. Sometimes an injury can send confusing messages up the spinal cord. The brain has a hard time decoding them, and it can over-react by sending alarm bells throughout your entire body. That is what was happening, and  the sensations I experienced were bizarre. Bed sheets felt like sandpaper. My skin felt sunburned. I could not sleep.  I could not find a comfortable position. I was exhausted and afraid of this acute and overwhelming sensory storm.


I am so fortunate to have a loving, intelligent and supportive husband. He is also a physician. He felt helpless during this initial phase and I could tell he was very concerned. But no matter what, he and I work as a team. We went into action mode and learned quickly that physical therapy might help me.


I found the best physical therapists (PT) in the field and I spent one week in San Franciso at the Pelvic Health and Rehabilitation Center. I remember after my PT assessed me, she told me that I was a "poster child for pelvic floor dysfunction."  All those years of adrenaline sports, combined with some structural imbalances set me up for this problem. Oh, and did I mention?  I have a skinny butt.


I spent two hours each day at PT which included myofascial work, trigger point release, and learning how to lengthen my short, tight pelvic floor muscles.  My PT taught me about trigger points, and how they impaired nutrition to the muscles and ultimately the nerves. I learned how connective tissue needs to be supple as it also aids in the flow of oxygen and nutrition to muscles and nerves. It was painful in the beginning, but after the first week, many of my symptoms calmed down. My PT was incredibly supportive and to this day, we still remain in touch.


I returned home and then continued PT locally with some outstanding PT's with expertise in pelvic pain.   Some people choose surgery, but I have not gone that route.  I often tell people this is an unpredictable journey, but most people recover or improve.  I spent two years in PT and I definitely improved but I am not cured.  Specifically, my sitting tolerance has improved. I can drive about 30 minutes at a time, although I still use a cushion. I have less urgency and frequency. Sex is a little more..."creative".  I am still on pain medication and I struggle with fatigue.  I walk about an hour every day with my dog. I practice tai chi, and I meditate. I gave away my bike. I snow shoe, but I don't ski. I nap. I read. I write. I knit. I nap again.


It has been over a year since I have gone to PT on a regular basis. In the past few months, my symptoms have worsened.  I feel hints of the centralized pain returning. I don't sleep well. I have decided to return to PT to see if I can get back to where I was about a year ago. The decline has been gradual and it's taken time to come to this decision again.


I've debated about blogging.  How much of my personal life do I want to share?  Did I have the physical and mental energy to do so? After four years of personal experience and learning, I hope that my sharing helps someone in their search for information and support.


My life has definitely changed. It is still rich and I am grateful. I live at a different pace now. I make more deliberate choices. I listen to my body.  I set boundaries. I express gratitude.  I struggle with fatigue and at times I get depressed. I count on my strong circle of support, and that includes those in the virtual realm.


I'm humbled by this challenge.  I encourage you to pay attention to those early signals as your body is talking. I encourage you to get the best help you can, and develop a trusting support system.
If you can't take a walk, take a step. I love walking slowly now.  Not all of this, has been bad.


Peace,
Cora.

A PAIN TO EXPLAIN

I am reposting this original post from when I was first diagnosed.  It tells the story of my early days of PFD. I'm happy to say that I am doing much much better.  For those seeking help, I hope you will take time to visit some of my early entries.  This post is featured in the book Pelvic Pain Explained by Stephanie A. Prendergast and Elizabeth H. Rummer.  They were the first physical therapists that I visited who diagnosed me and helped me on the road to healing.

In December, 2006 my life came to a butt numbing, crotch burning halt. My husband and I were on a flight to California. Halfway through the flight, I started to go numb in the “down there” region. I squirmed in my seat in fear, praying that we were close to landing. I leaned over and whispered to him that I was losing feeling in my crotch and thighs. Being an emergency medicine doctor, he went straight into E.R. mode. He thought I might be having a spinal cord emergency and that as soon as we landed; we may need to get to a hospital for a stat MRI scan.

Although I made it through that weekend without an E.R. visit, a few weeks later I had another episode, which in the famous words of my husband, “bought me a ticket to the E.R.” At the hospital, I learned I had injured some delicate muscles I didn’t even know I had, and apparently one of my nerves was a little ticked off too. The more formal diagnoses: pelvic floor dysfunction (PFD) with pudendal neuralgia (PN). Ah, such a clinical name for “pain in the ass.” I later learned that pudendal is the Latin word for “shame.” “Great,” I thought, “I have a shameful, painful condition. How do I explain that?”

It didn’t take long for family and friends to hear that I had an injury and was in bed on pain medication. Lots of pain medication. I called my dog training students and canceled sessions, made arrangements to have the house cleaned and the farm chores done. Like it or not, I was down for the count and closed for business.

When family and friends suddenly see an active, healthy woman flat in bed and unable to sit, they ask questions. “What did you do exactly?” “Can it be fixed?” “Why can’t you sit?” What hurts?” “How could this happen to you? You’re so healthy!” The questions were endless.

How you choose to respond to such questions is a very personal decision. I found with some family members, there was the “too much information” factor. For instance, for my older brother, just hearing “back pain” was plenty. Then there are the old soul friends with whom I was able to share many details. With them I’ve been able to talk about the dark, scary sleepless nights. I’ve whined about the lack of sex in my marriage. I’ve also shared with them the private details of PT, and the more humorous spin I tend to put on this whole deal.

When thinking about whom you tell and what you tell them, it is important to think about the motivation of the person asking. Is this a close friend with genuine concern? Is this person a snoopy neighbor or colleague? Is this person really a friend?

I’ve given all sorts of responses and some have been more tactful than others. I remember one male acquaintance kept asking for more details. Finally, I said to him, “If I tell you any more details, I’m certain you’ll blush!” He never asked me another question again. For a while I was telling people that I have a back injury with some muscle and nerve trauma. But, that explanation was met with numerous recommendations about back cures, which became tiresome.

Now, I am more relaxed about the whole thing. If someone asks me, I give a brief and vague response. This usually happens when I am in a public place and some chivalrous man will offer me his seat. Really, they still do that! I politely reject the offer, and if they persist, I say, “Thanks, I’m more comfortable standing, I have an injury”.

My PT gave me some incredible advice. I asked her how to respond to inquiries regarding my sudden need to stand up all the time and all the other life-style changes that accompany the spectrum of PFD. She said that I might ask, “What is it that you’d like to know?”  I love that response. It allows for a gentle pause, and time for the other person to respectfully reframe their question, or change the subject.

I don’t think there are any easy ways to communicate what PFD truly is to others in our everyday lives. Even our doctors and PT’s have trouble at times. What I think is most important, is that as we work towards healing, we do our best to surround ourselves with a caring support system. I have shed many tears in my horse’s fur on a quiet night in the barn. And ya know, he never asked “Why?”

Nerves Talk

Injured nerves gossip.

Rumors spread pain.