Wednesday, December 22, 2010

Bon's six words made it into Smith Magazine !!

Congratulations Dear Bonnie: 


 SIX WORDS WE DIDN'T SEE COMING!  author Bonnie.


Thanks Smith Magazine!



Contest: The One-Word Title of Your MemoirAnd the Winning Title of the One-Word Memoir Contest Is…
“Chained by hate, liberated by love”—The Best Six-Word Memoirs of the Week

Friday, November 19th, 2010
By Larry Smith



This week, the nation went Harry Potter crazy (as usual) on the big screen, and Sarah Palin welcomed Americans to her Alaska on the little one. The universe may appear to be contracting, but our Six-Word Memoir world keeps expanding. Here are six six-worders we love from the week ending November 12. Click on each author’s name to check out more memoirs.

Most Miraculous: “After eight miscarriages, mom had me.’”—Angel Zapata

Most Nostalgic: “Miss ice cream shop soda fountains.” —Skyrocket Jones

Most Tragically Meta: “Photoshop makes my faults go away.” —Forever Rain,
from SMITHTeens

Most inspirational: “Training wheels still on at sixty.”—Shiff

Most Poignant: “Chained by hate, liberated by love.” —AntiConformity 16
(profile image, above), from our new six-word project, Six Words on Pain & Hope, with the nonprofit, To Write Love on Her Arms

Six Words We Didn’t See Coming:

“Pushing, pulling. It hurts. Be still.” —Six Words from the Vagina Haiku blog, which describes itself as “A Pelvic Pain Memoir. My journey through pelvic pain told in essays, six-word memoir, and haiku.”

Thursday, December 16, 2010

A Prayer for Doctors: Norman Cousins






I pray that you will never allow your knowledge to get in the way of your relationship with your patients.  I pray that all the technological marvels at your command will not prevent you from practicing medicine out of a little black bag.

I pray that when you go into a patient’s room you will recognize that the main distance is not from the door to the bed but from the patient’s eyes to your own-and that the shortest distance between those two points is a horizontal straight line that works best when the physician bends low to the patient’s loneliness and fear and pain and the overwhelming sense of mortality that comes flooding up out of of the unknown, and when the physician’s hand on the patient’s shoulder or arm is a shelter against the darkness.

I pray that even as you attach the highest value to your science, you will never forget that it works best when combined with your art, and indeed, that your art is what is most enduring in your profession.  For, ultimately, it is the physician’s respect for the human soul that determines the worth of his science. 

Tuesday, December 14, 2010

Long Night

It is still dark out. Single digit weather in early December.  I hear a few cars slowly moving across the snow packed street.  But, all is still and dark and quiet.  Cowboy yelps now and then in his sleep as his respirations increase during dream time. His feet paddle like he is chasing a little critter in his sleep. Most of the critters are in deep hibernation right now.

Why am I posting right now?  I had a totally, sleepless night. I did not have any caffeine before I went to bed, and I took my usual sleep meds.  My brain just decided to stay awake.  So, tonight I didn't fight it. I just lay awake during this long night.

I skimmed through Jacob Teitlebaum's book "From Fatigued to Fantastic!"  Love that exclamation point at the end. So confident.

I took a questionnaire test to see if I fell into the chronic fatigue category or the fibromyalgia category.  Came out fibromyalgia.

I got up and had one small delicious piece of Dove Peppermint Bark that my friend Cindy got me hooked on.

I ordered some new vitamin supplements. All packed into one powerful formula.  Maybe I'll be more compliant just taking the big scoop.

I have to get up now and start my day.  Feed Cowboy. Wake up my body that did not sleep.

It's been over a year since I truly stayed up all night. Not one minute of dozing.

 It's very still out here in the country.

My legs ache a bit but I'll do some tai chi, take a warm bath, and this morning will be a strong cup of coffee day.

I hope you have been resting peacefully.  Today I choose to embrace the beauty of the day and remain a little awake.

Peace, Healing, Humor,
Cora

Saturday, December 11, 2010

Thank-you Woollies



Last post I mentioned I wanted to get back to my journal.  I picked up my favorite leather journal that I have ignored for quite a while.  It has beautiful rich brown grainy leather, with a thin leather tie to close my secrets.  I love looking back to see what I've written over the past months.  I found a little note of gratitude that I'd like to share. It's modeled after a blog called Thx Thx Thx by Leah Dieterich in which she shares a daily thx on her blog.  I love that practice of simple and sometimes banal and even disgusting thank-you notes. 
This one I wrote last January, no doubt on a cold winters night.

Thx Thx Thx-

my beautiful wool bedding.  You gave me sleep, restful sleep when my pain was such that I was the princess on the pea.  I could not tolerate a normal mattress, or any kind of common bedding. Every sheet felt like sandpaper on my skin.  You cradled me in wool. No need to count sheep. I'm sleeping on a cloud again, border collie dreams beside me.

Peace, Healing, Humor,
Cora

❤❤ my fish want some peppermint bark
☀☀ my bedding comes from surround ewe you can find it on my links

Sunday, December 5, 2010

Page Break




Hey friends,  over the past two months I've discovered that I am thoroughly enjoying writing again.  Now that blogging has returned me to the practice, I may take a little break from blogging and see where the practice of writing essays takes me.  I'll leave it up and post now and then. Hope to hear from you and if you have any questions, need any help with finding resources, just contact me through the email provided.


Want to share this little poem with you.  Harry, a four year old friend created it and his mom transcribed it.  This is his first poem and it is published with his permission.






The tiger runs behind him.

Accelerate!






☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀


please stop by and visit my fish
they'll get lonely ❤

"Plink"










One summer when I was about four years old, I remember hanging out with a few older boys in the neighborhood. They were sitting by the storm drain, throwing rocks and bottle caps and junk into the sewer. We’d toss them in like tiddily winks and we knew they landed when they “plinked” on the concrete floor.  We stared at the shiny objects settled in the shallow murky water.  Steve, the neighborhood bully challenged me to a dare and I was game.  I impulsively took the little gold ring off my pinky and dropped it right into the mess.  It seemed like an eternity, but I finally heard the delicate “plink” which meant my teeny tiny pinky diamond ring was afloat in muck far below the street. 
The guys immediately started taunting me, “How could you throw a diamond ring in the sewer?  I shrugged.  I didn’t have an answer and it just started to dawn on me that I might be in a little bit of trouble.  In my mind, I thought there might be a way to get it back, but I just didn’t consider the consequences.  After all, he dared me!   It was a nice shiny object that surely would add to the fun of making things “Plink”.
I remember a vague scolding from my mom, but I think she was more upset with herself for allowing me to wear that little pinky ring outside to play.  The fun for the boys was ruined too.  I didn’t cry and they didn’t get to see me get in trouble. 
That was my first lesson in non-attachment that I can recall.  I don’t remember spending much time grieving over that first piece of jewelry. However, forty plus years later, I could still walk you straight over to the exact storm drain where we played “Plink”.   The girl that accepted the dare is still with me, and I am slightly curious to see if a sparkling gem might be resting under the street. 


☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀☀






Peace, Healing, Humor
Cora.

the fish are performing a rock opera.
    don't miss out!

Saturday, December 4, 2010

Guest Author: Anna Tells It Straight


Thanks Anna,
Your wisdom 
and resilience, 
inspire all.
Cora








It’s tempting to present myself as a very well put together, calm, collected, successful woman (with vulvodynia). I could fall in love with the image of myself as the person who is so strong that nothing fazes her. I imagine that if I were that person I would just incorporate the pain into my sense of self and move on. My life would still be completely my own, entirely under my own discretion. Pain would just become one more little thing, like groceries or a period that must be incorporated into my daily life. Instead of pain having two parts – the physical and the psychological. My image of the ideal woman or girl living with vaginal pain would avoid the psychological ramifications of a life lived in pain and be free to just cope with the real physical pain. 

That image of the perfect woman probably isn’t helpful to any of us who live with pelvic pain, it definitely is not useful for me. But acknowledging that I wish I was her is probably necessary – at least that way I hope to prevent her from creeping too much into my thoughts without my awareness. I don’t want to come across like I have figured pelvic pain out. I haven’t. Chronic pain is a path I walk that changes every day. 

My life, My work, My self

In the early 2000s, I started graduate school in sociology and I am currently on the brink of finishing my long-awaited dissertation. My research focuses on how educational and social experiences in schools promote positive or negative adolescent development with a specific focus on health behaviors like weight control.  More generally, I am interested in how individuals use their education to gain health advantages. I never knew I would learn to use the research for my own survival through barrages of tests and overwhelming experiences with doctors.

In the US, there is a strong positive connection between education and health – meaning the more highly-educated you are, the more healthy you are on a variety of measures of health, like mortality (how likely you are to die), morbidity (how likely you are to have a serious disease), and self-reported health (how healthy you feel). My research interest is in how experiences early in the life course, while kids are still in schools, form a foundation of knowledge that people are able to draw from to gain better health for the rest of their lives. You may think that income or health care is the reason why the higher educated have better health (because those with more education are more likely to have higher, stable incomes and are more likely to have stable or better access to health care), but the link between education and health is much more complicated than just that. 

There are several concepts brought up in the academic literature on the link between education and health that have been particularly useful to me in thinking about how I need to deal with the medical establishment in order to optimize my chance of getting the best care possible in the case of my vulvodynia. An article that has struck me every time I have read it, is an article by Annette Lareau.  In it she describes how the way individuals interact with doctors highly impacts the doctor’s ability to give high quality, salient advice.  The idea I take from her article is that people who are willing to be honest and blunt with their doctors (however difficult that may be, which it often is when the subject is vaginas or sexual dysfunction), will get better medical attention. Another concept that has stayed vividly in my mind comes from the work of Catherine Ross and John Mirowsky – the idea of personal control.  When individuals feel like they can control the direction of their lives, they are more likely to have better health outcomes. Personal control is a key concept in health – if I don’t believe I can change my illness, then giving up may be very tempting. Instead, if I do my best to change my life to maximize health and minimize illness as best I can, I am most likely to have the best mental and physical health possible. Personal control also bleeds into the idea of empowerment – that I can take charge of some parts of my medical decision-making and become an active participant in my healing.  

Now let me rant (at least a little) about being a Patient Expert

In the case of vulvodynia, where treatment can take years and patients like me have to endure chronic pain for a long time, there may be times when the patient may know more than her doctor (if she chooses to pay attention to the trends of her body and if she chooses to get out there and inform herself about her disease and her options). A good doctor is key, but active participation on the part of the patient may make significant difference. 

We have a tendency in this culture to revere doctors and “modern” medicine. For me, questioning my doctors became the most important thing I could possibly do. Feeling in control, empowered, and confident enough to question authority became very important. Ironically, or at least to me it sometimes felt ironic, I was often crying while questioning my doctor’s latest ideas or her choice of drugs to treat my latest infection.  But crying, feeling upset, does not oppose control, empowerment and confidence. Becoming comfortable with my vulnerability that arose from being in pain, needing my doctor’s help, and the stress of also knowing I needed to keep my head in the “game”, was important too.  

I am currently almost five years into my journey with vulvodynia. For a long time, I really did not want to identify as someone with vulvodynia, and so I didn’t want to read too much about women’s experiences with it. It sounded too horrible. What if that became me? What I really wanted to know was that there was a finite deadline, an end in sight. Reading about women’s experiences weren’t guaranteed reassurance – until I had accepted myself. And I was really scared. Finally, I began to reach out and make connections. While there are people out there who are overwhelmed by their pain and who may overwhelm you, there are also people out there so full of amazing health information, support, and open ears to listen to your sorrows or triumphs – it can really help (maybe some other day I will rant about the importance of social support to health). There were also success stories out there. Women got better? WOMEN GET BETTER! Sign me up!

It took time, and the help of a wonderful team of physical therapists and my acupuncturist and me taking good care of my health, to start healing, but slowly things began to change. I went from never being able to sit, to being able to sit three hours straight, to eventually being able to sit all day at work (but of course taking regular walking breaks to take care of my pelvis). Certain other things came back to me – like my sexual desire – with time and work with my caring partner. Life also became easier because I adapted – I have a huge wardrobe of skirts, slacks, yoga pants, sweat pants and all things loose and comfy (before vulvodynia I owned one skirt). Though clothes are always challenging (because some days any clothes can hurt), I have options that help me feel better about the fact that I can’t throw on my favorite jeans. 

No one wants to think that they will have to live with chronic pain, but sadly (because I have see too many of my friends get sick with serious diseases like cancer), I realize that health is a privilege that many of us don’t get to have. Pain is awful. But I have been given this one life. I feel my only choice is to make of it what I will. I can choose to compare myself to my seemingly “healthy” friends, envious of their jeans-wearing carefree ways…or I can recognize the reality: I don’t know if that woman is suffering from vulvodynia or pelvic pain even behind her jeans. If she doesn’t have pain, maybe she has something else – some other silent illness she feels sorrow over that I don’t know about. Maybe I shouldn’t judge. Maybe I’d rather just focus on what I do have. Focus my energy on my healing. Of course with a few temper tantrums about the injustice of it all thrown in (I am not perfect), but a girl has to have a mindset to deal with something so frustrating and constant as chronic pain.

Though there is nothing romantic about surviving something horrible or difficult, I think its true that through life’s difficulties we learn new things about ourselves, maybe even about our fears, loneliness, and hopefully our ability to give and accept love. I have been most afraid, most alone, and also most in love while having vulvodynia. I have learned how to stand up for myself, how to make medical decisions on my own, how to be hysterical but still make sense when speaking on the phone, how to cry quietly but visibly while I explain my situation to someone new, how to allow myself the space and freedom to get a bit fucking upset about this every once in awhile and how to continue living my life with joy and abandon. I have learned to be brave, to tolerate uncertainty (at least more than I once could). I’ve learned to make the best of a difficult situation and I’ve learned that priorities and living exactly how one intends to live are really important. I also have gotten to the point where I can talk to doctors without getting scared, and I can talk about being in pain (usually) without instantly crying. I have changed, and I like who I am. 

For the record, and to spread a little hope, I consider myself 90% better…I rarely have to think too much about my pelvis, by which I mean I can do almost anything I want and feel no pain. I occasionally have flare ups, and sometimes they depress me, but I have also learned that a flare doesn’t mean I am regressing back to pure pain hell. They too will pass. I just have to be more stubborn than my pain. Stubborn. Now that is a test I can pass! One final thought…I recently, for the first time, asked my physical therapist, how my pain compared to most people’s pain…I add this to give you perspective. While it is true that there are people who have situations that are much worse than my own, my pelvic pain was not insignificant. In fact, I have seen some pretty dark painful times. My message in this moment of pain comparisons is that, I kind of issue a challenge to anyone who feels they cannot heal, to give it a try. My physical therapists helped, my doctors helped, my acupuncturist helped, but I guarantee you that I did it.



* fish are in the snow below,
  stop and rest a while

Wednesday, December 1, 2010

Rhythm




Fatigue is familiar to me these days.  Often, my sleep is not restful.  When the alarm goes off in the morning, I pace through the snooze alarm cycle and sleep too long.  I wake up even more exhausted, and disappointed about the wasted time. I used to be one of those annoying morning people, up at sunrise with my internal alarm, ready to go on a morning run and do farm chores.

Today, the sun awakens me.   I lie on my comfy wool bedding a few minutes, and slowly slide one weighty foot off the bed, then the other.  Dangling on the edge, I consider my options.  I could take a vicodin and have some coffee to wake me up. That would do the trick.  Or, I could do my morning round of tai chi, and make some green tea. Both would start my engine. 

Still half asleep, I shuffle into the living room, pull up the shades and chains of sunlight glisten on the frosted pasture.  The neighbor's horses graze rhythmically.  The suet bricks are breakfast for the red-bellied and downy woodpeckers. 

I start the water for tea and turn on my favorite Japanese instrumental music.  My legs ache and my fingers are cool and cramped.  The opening stance of the tai chi form is called the horse stance.  It grounds me and connects me to the earth.  I face the window. I see the horses.  I inhale.  I focus on my tan t'ien, the Chinese word for center- the life force. I breathe with my heart.  I am still.  I honor gravity.   Cowboy, my border collie ambles over to me and settles close.  He sighs and collects my quiet energy.  

As I breathe and start the tai chi form, my mind is present, but random thoughts start to enter.  "What do I need to get done today?"  I let the thought float away. Another thought sneaks in.  Just passing through.  I feel the chi in and around my body; my arms float, gently propelled by my tan t'ien.  My muscles are receiving nourishment and they relax.  The blood vessels in my fingers dilate and become warm.  My breath continues to nourish me and I gently awaken.  


the fish need breakfast too.

Sunday, November 28, 2010

A Letter

 Recently I composed an open letter that I wanted to send to doctors, PT's and allied professionals that care for people with chronic pelvic pain.  I worked on it for days and it was composed as a virtual symposium and I was the guest speaker.

As a nurse, I did my share of public speaking while working with children and families who faced chronic illnesses.  So, it was fun for me to pretend I had the stage talking to a room full of people who care for us pelvic pain types.  I didn't end up posting that letter or sending it out to the big group, but the exercise helped me identify the concerns I have that affect our care.  I sent a different letter to a few trusted PT's.  I hope to hear back from them.

Over the past four years of living with pelvic pain, I've learned a lot from fellow patients and we share similar frustrations and concerns about appropriate diagnoses and access to experts.  Through these conversations and my own experiences, I'll share some of the questions that I outlined in my letter.  It was primarily focused on PT.

Are there evidenced based studies available to support physical therapy for patients with PFD/PN?

 Has the PT profession considered creating a certification for the treatment of pelvic pain?

 What really defines a PT as a clinical expert in the treatment of pelvic pain, PFD/PN? 

 Is there an algorithm designed to aid in the diagnosis of chronic pelvic pain? 
 One that would help the primary care doctor diagnose and refer more promptly.

What efforts are being made regarding a campaign targeted at primary care physicians and OB/GYN's to aid in better diagnosis and referral of patients? 
Is there an effort being made to educate pain specialists in the unique needs of the pelvic pain patient?




 Is there any collaborative effort on the part of PT's to document the outcomes of therapy?    For example a questionnaire at certain intervals post-discharge from PT.  Perhaps at 3, 6, 9, 12 month intervals to determine outcomes, quality of life, functioning after PT.  Other outcome measures such as disability claims, return to work might be evaluated as well.


 I have spent a lot of time looking at the IPPS site.  When I read the bios and mission statements of the doctors there, they are quite impressive. I am wondering how active they are in pursuing these goals, as some are very similar to what I have outlined above.  I do want to say that I think the books that have been written thus far, the educational patient handouts, and few t.v spots (which were sensationalistic) seem to focus on pelvic pain as primarily a sexual pain issue, and they minimize or dismiss the overall lifestyle effects.  In addition, they fail to address the complexity of the heterogenous patient population that develops pelvic pain.


I concluded my letter with comments from the point of view as a patient, a nurse, and what I have observed as a member on some pelvic pain forums.  Generally speaking, many chronic pelvic pain patients are on their own when initial treatments fail.  The care is quite fragmented and primary care doctors are uninformed about the diagnosis and treatment options. The result is often that patients end up with significant  financial, physical and emotional costs.

I hope to get a useful dialogue going to improve communication between the specialties and improve our access to people with expertise. The reality right now, is that like many patients with chronic, misunderstood conditions, there is a dearth of peer reviewed studies,  educational materials and access to expert practitioners.  That leaves many patients running in circles like the proverbial hamster on a wheel, spending our limited resources searching for answers.  This post and that letter, is a small attempt to help us get off that wheel.

Peace, Healing, Humor

Cora


❦ feed the fish
    make a wish




                

Saturday, November 27, 2010

Swearing is good for Pain !!#@##$!

I heard this study today on the wonderful ignobel prizes.  They are awards for unusual science that first makes you laugh, then think.
Had to put this out there.

Cora


Swearing increases pain tolerance

Category: Neuroscience • Psychology
Posted on: July 13, 2009 1:02 PM, by Mo
SWEARING occurs in most cultures - people swear to let off steam, or to shock or insult others. It is also a common response to a painful experience. We've all done it: after stubbing our toe, or hitting our thumb with a hammer, we draw a sharp breath and mutter a swear word. Until now, though, whether swearing actually alters our perception of pain had not been investigated. But according to a new study due to be published next month in the journal NeuroReport, swearing increases pain tolerance, enabling us to withstand at least one form of pain for longer.
Some pain theorists regard our tendency to swear after hurting ourselves to be a form of "pain-related catastrophising" - an exaggerated negative mind set which is brought to bear during a painful experience. As such, swearing is thought of as a maladaptive response, which contributes to the intensity of the pain and emotional distress. Given that it is such a common response, Richard Stephens and his colleagues at the Keele University School of Psychology set out test the hypothesis that swearing would decrease pain tolerance and increase pain perception.
They recruited 67 undergraduates, and asked to make two short lists of words - one containing five words they might use after hitting themselves on the thumb with a hammer, the other containing five words they might use to describe a table. The participants submerged one of their hands into room temperature water for three minutes, to provide a standardized starting point, then transferred it to a container of cold water and instructed to keep it submerged for as long as they could. In one condition, they were told to repeat the first swear word they had included in their list; in another, they repeated one of the words describing a table.
The researchers measured how long the participants kept their hands submerged in cold water, and asked them to rate the amount of pain they felt. Their heart rates were also recorded after they had submerged their hands in room temperature water as well as after the submersion in cold water. Contrary to their hypothesis, they found that swearing actually reduced the amount of pain felt. The participants kept their hands submerged in the cold water longer for longer, and also reported experiencing less pain, when they repeated a swear word than when they repeated a word describing a table. Swearing was also associated with increased heart rate. 
Swearing therefore enabled the participants to tolerate to the cold temperature for longer, and also caused a reduction in their perception of the pain felt. A difference between males and females was observed. Swearing led to a greater reduction in pain perception and a bigger increase in heart rate in females. Most interestingly though, the effect of swearing in females occurred regardless of their tendency to catastrophise their pain. On the other hand, in the males, catastrophising was found to diminish the effects of swearing on the felt pain. This is interesting in light of other findings which show that men generally catastrophise less, but swear more often, than women.
This study shows that swearing appears to have an analgesic effect under certain conditions. Exactly how is unclear, but the authors suggest that it is because swearing induces negative emotions. It is well known that pain has a strong emotional aspect to it. Fear of pain, for example, is known to enhance pain perception, possibily by activating pathways which descend from the brain and modulate noxious stimuli entering the spinal cord. Swearing, too, is known to induce negative emotions (according to Steven Pinker, it taps into the "deep and ancient parts of the emotional brain"). It may therefore trigger a physiological alarm reaction known as the fight or flight response, which accelerates the heart rate and reduces sensitivity to pain. 
Related:
please feed the fish so they won't be in pain

Thursday, November 25, 2010

Guest Author Pomegranate: Six Word Memoir






Still me
Still smiling
Just smaller






  how peaceful it is
       to feed the fish

Monday, November 22, 2010

Invisible Friends







Four years ago when I developed pelvic pain, I remember a PT telling me about a support group called Happy Pelvis on yahoo groups.  I instantly loved the name, given that my pelvis was grumpy at the time and I felt afraid and isolated.  I couldn't really get my mind around the concept of talking about my personal health issues to strangers on a computer screen.   I signed up anyway, and lurked for a while until I felt comfortable enough to join in the conversation. 


Through Happy Pelvis and another group called HOPE I have met some amazing people. They are courageous in sharing their stories, insights and experiences both positive and discouraging. Beyond emotional support, I have found resources that I would not have found anywhere else. I've been able to educate my doctors, family and friends with information from these communities.


A few women are now my dear friends.   Despite our age differences and geography, we became fast friends. To one, I am a surrogate big sister and we can talk about life well beyond what initially connected us. Our family backgrounds are strikingly similar and that made us instantly familiar with each other. When I am having a bad day, she is there for me with a sweet text message and a photo of her beautiful cat. Another sends me photos of her travels to Costa Rica and together, we share a distant sunset. 


 I recently reconnected with a friend after she took a break from the support group.  I thought about her so much over the past year and I was elated when I saw her return.  We caught up by phone the other day exchanging stories about disappointing doctors and other frustrations related to pelvic pain. She told me that she was adding a new puppy to her family, and I quickly went into dog training mode and shared my expertise.  Bon and I  were able to slip right back into the cadence of our friendship. Listening to her southern accent adds texture to a friendship where we likely will never meet one another. There are times when I have to remind myself of that.  


The two groups that I belong to are a sanctuary.  They provide a sacred space to vent and share with others who are on the same trail as me. Like therapy, I can go there and dump my worries and support others. I can preserve my strength and be more available to my husband, my dog and friends around me. 


I'm fascinated too by the sociology of the groups. . Sometimes I sign on and study the screen names and avatars. I laugh every time I see Pelvis Stressley.  Now, how did he come up with that name?  Her Majesty writes each post with commanding confidence and royalty.  I wonder about Tiny Dancer?   I imagine a little tinker bell, petite and waif-like. 


Then there are names like Graceunderfire.  I say it real fast. I want to have "graceunderfire".  A reminder of what we need now and then.


Lately, I've gotten to know a lovely woman called Pomegranate.  I stumbled upon her blog which inspired me to start writing again.  As we delicately start sharing little seeds of our lives with each other, I sense a friendship developing.  


I know that these friendships remain in the virtual realm, and are likely to be transient.  Yet, the support and guidance we give one another is a gift.  The definition of friendship is evolving for me. I have a collection of invisible friends. But they are real.


Peace, Healing, Humor
Cora


fish below, glowing, hopeful for some food 
and a visit. sweet karma when you feed the fish 
and wish upon a fish.







Friday, November 19, 2010

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. 






Wednesday, November 17, 2010

Chair



The things we take for granted


Peace, Healing, Humor
Cora.


☀ so said the fish in the ocean blue,
give me a little morsel or two

Monday, November 15, 2010

Coexist



My body is making a political statement.  There is a physical polarization going on in my body. There is pain, this uninvited, familiar, and not so new entity that has decided to play politics with me. Pain taunts my neurons, messes up the signals, and you know, causes all sorts of noxious up and down the spinal cord disturbances.  My nerves are shouting "I am not a witch!" and then they calmly say... "I am You." I shout back, "You are so not me!" I want to switch the channel but the witch will be there again, "I am You." is everywhere. I tell my pain simply, We must co-exist. You shall not dominate my airwaves, 24/7. Pain whimpers. Pain takes a poll.  I invite pain to bed. We cuddle, we pet my dog, we get the special wool bedding arranged just so.  I need some rest and so does pain.  Good-night witch.  Good-night Pain. 




Peace, Healing, Humor
Cora.


virtual fish need food too.
please feed my fish. You'll feel better.
Promise.

Saturday, November 13, 2010

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

Friday, November 12, 2010

Guest Author Bonnie: Six Word Memoir


Pushing, pulling.
It hurts.
Be still.


 ❦teeny tiny fishes have many wishes
please feed us and you'll relax too

Wednesday, November 10, 2010

Prayer Flags




Colorful Cloth
Tied Together
Invite Grace






Peace and healing,
Cora

☀happy fish are well-fed fish.
please feed my fish.