As I ascended the side of a mountain on my weekly hike, the ground still covered in places with fresh snowfall, the scent of damp scrub oak leaves filling my senses with pungent bliss I was reminded of my great gratitude in having my IC in remission.  Although I still have the occasional relapse my IC no longer defines who I am or drives every decision of my life and I am thankful to have the energy to spread hope and awareness to others struggling from IC and related diseases.  As I reflected on my dark days lived with IC, where even taking a hike filled me with dread as I wondered if the pain in my bladder and vagina, once flooded with endorphins would cause a painful flareup.

My thoughts echoed the to and fro calling of the birds and mountain squirrels signaling the cry of warning to one another from the tops of the trees as I rounded another heavily wooded section of the trail head.  One moment I was myself four years ago-riddled with pain trying to walk for the exercise but not really enjoying it-and the next I was vigorously walking a trail pain free and smiling.  In the next moment I knew what my blog entry would be for the upcoming week!  I would like to place an invitation to anyone suffering from IC who would like to contact me to have your IC story published on this website for others to read.  Do you have a diet, doctor or treatment protocol that is giving you both hope and a lessening of your pain?  What are your thoughts about a hereditary link to IC?  The questions could go on and on.  All I know is that I would love to be able to share YOUR story of living with IC.  Please send me a private note through the contact me form if you would like to set up an interview. 

I am much more drawn to reading magazines about women's health, urology, entrepreneurship and the occasional foray into mid-century modern design, so maybe I have missing instances when IC and other women's health issues have debuted in glossy women's magazines.  Last week while I was eating my lunch at work (and after thoroughly chastising myself for forgetting my library book) I was mindlessly thumbing through one of the aforementioned glossy magazines that seem to contain more ads for fingernail polish and tooth brighteners than actual articles, but I digress.  Imagine my surprise when I came across an article about the female urinary tract smack in the middle of the November 2011 issue of Ladies Home Journal and an ever so small blurb about Interstitial Cystitis.  I think I actually interrupted one of my female co-workers with an "oh my goodness! I hate to interrupt but I just found a little something about IC in this magazine!"  Sadly my excitement was very quickly replaced with disappointment bordering on anger.  All of my hopes about IC finally going 'mainstream' were very quickly dashed by the tiny and very insignificant write up which glossed over the number of women in the U.S. alone with this disease, but how they made light of the sheer pain it entails, how many years it usually takes for a diagnosis, and how the quality of life for IC sufferers is greatly compromised.  I am also furious that the article claims that IC pain from urine in the bladder is somehow remedied, cited in the article as 'relief once you pee'.  If the writers had actually done some research they might have been able to provide information for women who might have IC but have not been officially diagnosed by providing the main symptoms of: chronic pain, urgency and frequency.  And instead of only citing that 'up to 8 million women might have IC' as provided by the Interstitial Cystitis Association they could have actually provided their website as a resource.  I am still reeling that the writers of the article left out so many important facts and factors about IC, leaving the reader to think that IC is not as devastating and as prevalent in our society as it actually is. 

I am excited to announce that the transcript of my interview with Dr. Robert Echenberg has been posted to this website as its own page!  Please check out the interview as Dr. Echenberg does a great job of explaining chronic pain and how it can be treated through an integrative approach. Dr. Echenberg currently runs the Institute for Women in Pain located in Bethlehem, PA and has a background in OB/GYN.  Please share this interview transcript with anyone you know silently suffering from chronic pelvic pain.  Or perhaps you or a loved one have been looking for a place to seek out warmth and understanding for your chronic pain disease-Dr. Echenberg is both of these and then some!

Thank you WEGO Health online for providing the heads up for an upcoming world wide screening of "LIFE Before Death" followed by a doctor lead panel discussion about the chronic pain health crisis.  The following information is from www.Tufts.edu:

LIFE Before Death The Pain Research, Education and Policy (PREP) program within Tufts Public Health is honored to be one of the global sites selected to host a world premier simulcast of LIFE Before Death on Thursday, February 2, 2012 from 3 - 5:15 PM.

Our screening of this award-winning, multinational documentary on the global crisis in undertreated pain is open to all who are interested - clinicians as well as the general public -- at no cost. The film was made possible through support of several organizations, including the International Association for the Study of Pain (IASP), the Mayday Fund, and the Union for International Cancer Control (UICC). This event is in conjunction with WHO's annual World Cancer Day on Feb 4.

We are pleased that Judy Foreman, a nationally syndicated health journalist and author, will open with an introductory overview. After the screening, a panel of palliative care clinicians and PREP faculty, joined by Ms Foreman, will present their reflections and conduct a conversation with the audience.

DATE: February 2, 2012
TIME: 3 - 5:15 PM
PLACE: Wolff Auditorium, Tufts Medical Center, 800 Washington Street, Boston, MA

80% of all people globally lack adequate access to essential pain medicine. More than 3.3 million people die with untreated moderate or severe pain from cancer and HIV each year.

Please view the "trailer" about this unique documentary. Attached is a flyer for download and display. Please forward this information to colleagues and lists that may have a personal or professional interest in addressing the problem of undertreated pain.

I am excited and honored to announce that I was able to have an interview with Dr. Echenberg last week and I hope to be able to provide everyone with the completed transcript within the next couple of weeks or so.  Dr. Echenberg is the founder and director of the  Institute for Women in Pain in Bethlehem, PA, co-author of "Secret Suffering: How Women's Sexual and Pelvic Pain Affects their Relationships", and has served on numerous medical boards in both the U.S. and internationally.  It is important to note that the work that he and other doctors are doing around the world in the areas of chronic pain, IC and pain management will give you much hope if you are suffering from the severe pain of IC and/or other chronic pain conditions. Please visit the ICPBS Support website soon for more details and to read the full interview!

Sometimes the betrayal of a loved one
hurts more than the betrayal
of body,
of a bladder filled
with sharp and unending pain.

When all you want
is understanding,
comfort,
love
But instead you are given
feelings of hopelessness,
separation
or that somehow the pain
is your fault.

Sometimes the pain
of understanding,
that some people
are not as strong as you,
cuts to the bone
down to the marrow of your
very being.

But sometimes the separation
from those who
bring you further
down
down,
into the whirlwind of despair,
is the thing that will help you
on your road to recovery.

Sometimes that road
has to be traveled alone,
but you will be
just fine.

For this first post of 2012 I would like to offer you a post filled with hope.  There are many other IC patients like myself who have gone into remission and just like how each IC patient's IC is different, how we put our IC into remission is also unique and different.  The hope is that remission is a possibility.  Also, I would like to continue to point out the new treatments, diagnostic protocols and drug therapies that are on the horizon.  Now more than any other time there are technologies, doctors and researchers who are going to change the current paradigm in important and significant ways.  It will be a time as important and helpful to our society as the discovery of penicillin, studying human cells under microscope and other significant  break-throughs which have advanced medical science. 

There is so much hope in a world of severe pain and a diagnosis of 'incurable' that I know how difficult it can be to see past the end of a week or a month or a year.  Dear IC patient there are so many people working towards ending your suffering and I hope to bring you these stories of hope and transformation in 2012.  Hold near the people who provide you with support and comfort and hold onto the hope and possibility of the future of IC, for someday soon its diagnosis will be one of a name not so filled with terror but of 'yes, it's IC and here is how we're going to treat it'.  It is my hope for all of us.

As I contemplate on writing one of the last blogs of 2011 I look back and reflect upon the many IC patients, advocates and doctors who I have spoken with and I realize a common thread of resiliency and hope.  Looking forward to 2012 I see even greater advances in technology, treatments and advocacy for IC patients and I am filled with even greater hope.  So no matter your religious beliefs, whether you light the candles of a menorah, unwrap Christmas gifts by a lighted tree, or celebrate the winter solstice, I would encourage you to offer a prayer for the coming year.  I know that I will send one out to all of the IC patients both met and unmet and one for all of the tireless doctors, researchers and advocates in the numerous fields of study. 

On a personal note I anticipate great things in the coming months for the ICPBS Support website.  Look for more interviews with doctors from various backgrounds and fields of study, patient interviews, and much, much more!  I am also hoping to make a big announcement in the late spring or early summer months.  Thanks, as always, for your kind notes of encouragement and your courage in dealing with such a painful condition.  Happiest holidays to you and your families!  And I leave you with an inspiring, jaw-dropping video to give you a glimpse of what the medical community and doctors such as Dr. Anthony Atala are doing to advance technologies in the areas of organ and cell reproduction:

http://www.huffingtonpost.com/2011/12/20/printing-organs_n_1160307.html?ref=tedtalks2011&ncid=edlinkusaolp00000009

For six consecutive holidays (of course I am referring to Thanksgiving and Christmas) the days came and went like so many drips in a faucet: blue, gloomy and the same as every other day.  So much of a holiday is centered by food, alcohol and sitting around laughing and being merry with your friends and family members.  I remember thinking to myself without food and merriment there is no holiday. 

The severe and debilitating pain of IC and vulvodynia drove me half-mad and I think I walked around the aisles of Christmas decorations as if I were in a carnival of horrors.  Looming out of the aisles the cans, packages and boxes of all that glittered but could not be eaten without horrific pain.  Gleeful shoppers seemed stunned by my lack of jolliness and my cart filled with broccoli, brown rice and organic chicken while their carts were overflowing with all of the food that an IC patient could only dream about (cue "Food, Glorious Food" from Oliver Twist).  Yes us IC patients all shared a commonality with a little orphan boy but instead of being kept from the food due to our income our bladders are our jailers. 

Speaking of locked up, you might as well lock up every bottle of alcohol and flush the key down the toilet.  I often look back in sadness at how my palette was beginning to develop for choosing the perfect varietal of red wine to pair with my dinner.  I decided that I would tour the varietals and regions around the world.  Chile is where I was when IC overtook my body.  Oh for a glass of Chilean cabernet to celebrate the Christmas season!  For even in remission I cannot drink a sip of red wine (or any other alcohol) without immediately starting to have bladder pain.  I raise a silent glass to myself before I got IC and I raise the glass to all of my IC brothers and sisters who will celebrate the coming holidays in pain.  I hope that you are able to celebrate in a way that is as low stress and as meaningful as you can make it.  I also wish that you are surrounded by friends and family members who support you that greatly outweighs the candles on your menorah or the gifts under your Christmas tree.

As with most things with life age and circumstances can knock us to our knees and show us a completely different view of a situation, a belief or and idea that we felt so sure about years prior.  Unable to have the knowledge and understanding of a diagnosis of an incurable condition such as cancer I strove to shed some light on the extreme pain, loneliness, depression and isolation that accompanies someone diagnosed with a chronic pain disease.  Initially I was hoping for the same level of research, insight, empathy as I lost six years to the pain and loneliness lived with IC but I realize that comparing IC or any other chronic pain disease to a terminal disease is like trying to compare pine cones to calligraphy pens.  Simply stated a terminal disease and a life-sentence of a painful chronic condition are two sides of the same coin, where with one your pain and immortality slips by more quickly but you would give anything for one more day, month, year to live in spite of the pain whereas a lifetime of suffering pain causes you to measure each moment more slowly waiting for the years to go more quickly so you can pass away into painlessness.  Like the edge of a coin pain and immortality blur and are so closely linked it is hard to separate the one from the other.  The cancer patient seeks time and for the remainder of their days to be as painless as possible.  The IC patient seeks compassion and for also for the remainder of their days (years) to be as painless as possible.  In this sense the two are similar yet oh so different.

Recently I have been with a close family member suffering from cancer and journeying closer and closer to a final chapter in her life, I feel a sense of joy and sadness as well as both an emptiness and a fullness about life.  I cannot understand the pain of her cancer but I can understand how the pain in her body can sometimes supersede the actions of the world at large. Gazing into her eyes I am reminded of my own immortality and a sense that my mission to help others suffering, either from IC or cancer is a gift both priceless and filled with pain.  Suffering, whether over the course of months as a cancer patient or over a lifetime as a chronic pain sufferer, can never be easy but if we surround them with our presence and unconditional love then we can gently carry part of their burden of suffering.  In this small way I am learning to be an advocate of both those suffering from chronic pain diseases as well as cancer instead of trying to point out the differences.  As the Buddhists say, "Life is suffering with brief moments of joy."  Try to be the joy in someone's suffering.