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


❦ 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.


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. 
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

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

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


The things we take for granted

Peace, Healing, Humor

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

Monday, November 15, 2010


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

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

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,


☂ 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,

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

Monday, November 8, 2010

Dear Pain...

.... Just be quiet now and then

Peace and Healing,

 ❤ Please feed the fish 

Sunday, November 7, 2010

Invitation for Sharing

I know we are a community of men and women that share an unusual journey. We all have a voice and beautiful words to share.  I'd like to invite people to send me a six word memoir or haiku about their experience with chronic pelvic pain. I'll post one each week.  The practice of writing is a form of healing and expression. So please, take that leap and send me your work and it will be good to hear the words of others as well. Just send them to my email on the blog.  I hope to post one each week, on Fridays. Please note if I should post your name with your entry or keep it anonymous.

Peace, and happy writing,
And please feed my fish.

Friday, November 5, 2010


Forgive Yourself
Forgive Others
Forgive Pain

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

Wednesday, November 3, 2010

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.


Monday, November 1, 2010


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?”