Wednesday, January 20, 2016

A PAIN TO EXPLAIN REVISITED



I am reposting this original post from when I was first diagnosed in 2007.  It tells the story of my early days of Pelvic Floor Dysfunction. I'm happy to say that I am doing 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 physical therapists Stephanie A. Prendergast and Elizabeth H. Rummer who diagnosed me and guided 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?”

Saturday, June 6, 2015

Thanks for Stopping By




It's been a few years since I have written about my chronic pelvic pain.  Life has been very good and my pain is well managed these days.  If you are visiting to get some information and read about my experience when my pain was at it's worst, please look at the archives and visit my earlier posts. You'll find many stories about my journey as well as resources.  In the near future, I may re-post some of the "best of" that might be of interest and help.

I wish you healing, recovered health, and peace.

Cora

Thursday, February 16, 2012

Post-Partum Training for you and your Vagina

I saw this post on the Facebook page of my physical therapist. It was first released on Slate Magazine.  The article is very general, but the idea of getting your pelvic floor into shape pre-pregnancy and post-pregnancy make so much sense. Many athletic trainers attempt to train women to strengthen the pelvic floor through kegels, which can create a very unhappy and painful vagina. So, my bias would be to find a PT who works exclusively with woman and pelvic health.  Keep that pelvis, happy!  




http://www.slate.com/articles/life/family/2012/02/postnatal_care_in_france_vagina_exercises_and_video_g




Peace, Healing, Humor,


Cora



Friday, February 10, 2012

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

Sunday, May 22, 2011

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. 


Saturday, April 23, 2011

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.

Friday, April 15, 2011

LONG NIGHT

It is 03:30 and for some reason, I am still awake.  I'm not in pain, just awake.  I am  
reminded of a fortune from a cookie that I saved for years.  My husband found it in a cookie during the years he was a resident in medicine, often sleep deprived.  I am also listening to the BBC, and they are discussing nursing in the NHS.  I am happy to hear such strong advocacy for nurses.  Usually, with the soft voices of the BBC, I can fall asleep to the late night BBC broadcast. With such proper accents, bad news sounds less bad.

Well, here is the fortune:

Long is the night, to those who lie awake.

Sov Gott,
Sleep Well,
Guten Nacht,
Catch some ZZZzzzzzz

I'll be singing "Here comes the Sun," shortly

Peace, Healing, Humor

Cora

Feed the little fishies please
kind thanks.
❁❁