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

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.

My apologies, dear readers and IC patients, for a slight delay in this week's blog post.  It seldom happens to me but I recently had the wind knocked out of my sails by someone who wrote a very personal and vindictive comment to me about the inappropriateness of sharing with others about IC on an international forum.  It has always been my hope and intention to spread awareness of IC in whichever forum I am able to because who knows which person knows someone who knows someone with IC?  IC does not know international boundaries and it is my hope, and the hope of countless others, that IC becomes a household name someday.  

I hate to, yet again, draw comparisons to cancer because there really is no comparison to a chronic pain disease with a painful and incurable diagnosis of cancer, but I feel that I must draw the comparison solely because within the same international forum that I posted information on IC awareness there have been thousands of posts on cancer, all received with much gratitude and approval.  I had never seen a post about IC and thought my posting for IC awareness would garner the same gratitude for spreading awareness about a disease that affects millions of women and men (like cancer) but was instead treated to a vindictive note that I should not be speaking about my 'cause'.  I will not be quiet.  And I do not consider IC to be my little pet 'cause'.  I suffered serious, debilitating, suicide thought-driven IC pain and symptoms for five years and I have stayed active within the IC community because I want to be able to support the millions of other IC sufferers with words of encouragement and support.  IC is not just a little pet cause of mine.  IC is a PASSION for me and I want to be allowed the same respect for sharing awareness for those suffering from IC in the same vein as cancer awareness and cancer survivors.  I refuse to allow one private note to quiet me or to think that in some way spreading awareness for an incredibly painful disease is shameful or inappropriate. 

IC is real and I will never stop spreading the word about what the ICA, the ICN and doctors and researchers are doing world-wide to diagnose and treat this ravishing disease.  I will not take a private note personally, but I will personally see that my efforts to spread awareness double in the coming year.  Challenge me.  I will use the same force and effort that I used to prove countless doctors that I could not get my IC into remission.  There is a lot of fight in me yet and this time I will turn it towards those who matter a great deal to me: IC patients.  

Sometimes, in the midst of the hustle and bustle of life, all of the difficult things you have gone through over the years rise up and stretch before you and then shimmer and morph into something, if not beautiful, but shimmering and unexpected.  Call it a higher purpose. Or a reason for why the dark times happened all of those countless days and nights.  I never imagined that I would someday speak to men and women with IC all around the world or be connected with doctors and health care professionals working on cutting edge technologies to help with chronic conditions.

After so many years of being the 'odd one' at work eating her strange and bland meals with eyes full of shock and the eyes squinting to look at my thin frame with the question of 'anorexic?' not completely hidden from their gaze, I almost pinch myself now when co-workers shyly ask me why I eat as well as I do-and can they get the recipe?  And then there is the remorse and guilt I sometimes feel in speaking or writing that my IC is in remission because I never want to come across as cruel or uncaring for the millions still suffering.  To hear from a fellow IC patient that it is good to hear someone who made it through the other side of the dark days of IC able to enjoy life gives her encouragement with her daily struggles, left me speechless. 

A very dark and lonely road began my journey with IC but along the way I met a handful of beautiful souls working through their own health struggles who encouraged me to keep on the path towards health, and I am forever indebted to them for their courage and strength to encourage me when they themselves were living in horrific pain.  One dear friend succumbed to the pain of IC complicated by some other serious and life threatening health conditions and I can still hear her gentle and straightforward words of encouragement and advice when I close my eyes.  (Sweet J.P. I miss you so much-especially in the fall!)  It is for her and for those still living with the pain of IC that shimmer along the side of the road, reminding me of the higher purpose of my life.  I thank each of you for your continued encouragement, questions and support of me, my IC story and of this blog and website. 

I had the privilege of meeting face to face with a woman and IC patient earlier this month and hearing her IC story from the dark and painful early days with her own tale of a happy ending and her IC going into remission after her journey towards finding answers for her IC puzzle.  Her words of encouragement and questions about my IC journey left me feeling very hopeful indeed and honored to have met an IC patient in person to share our tales of woe and triumph over a cup of coffee-and knowing that both the act of socializing and the drinking of coffee were something to be cherished as we could not do either when our IC was so bad.  My new friend's IC story will remain in my heart as I do greatly honor each IC patient's privacy but I did want to share how wonderful it was to meet an IC patient in my living room instead of across cyber space (although I still greatly cherish all of the IC men and women who I have 'met' this way!)

My new IC friend had a few suggestions to pass along and share with other IC patients in the hope of sharing some items that might be helpful for someone's IC pain and symptoms (it goes without saying, I hope, that we are not doctors, simply IC patients, and share these items for you to try, but highly encourage you to discuss them first with your doctors):

• d-mannose-(clear tract)
  
• Cantharis-a homeopathic remedy helpful for urgency
• Sesame seed oil-organic whenever possible
• anti-histamines
• finding the BEST source of drinking water!

If you have some IC friendly products/remedies to suggest for other IC patients to try out please feel free to email me via the 'Contact Me' form located on the drop-down menu of the website.  IC patients walk among us...perhaps we just don't know it yet, so information sharing and IC awareness is the key to helping one another! 

Often I have overwhelming feelings of gratitude that my IC is in remission.  It is important to also write about the hope that abounds in the IC community in the areas of advocacy, research and diagnostic and treatment protocols that simply did not exist 7 years ago when I stumbled down the black and painful rabbit hole into the world of IC.  From the continued efforts of the IC Association and the IC Network to doctors such as Dr. Matt Rosenberg uncovering fast and as close to painless diagnostic tools for diagnosing IC to doctors in the forefront of IC treatments such as histamine blockers and stem cell therapy treatments such as those being utilized by Dr. Elliot Landers there is hope to share with all IC patients.  It is so easy to share the truth of living with IC that it causes extreme pain, discomfort and floods an IC patient with feelings of guilt, shame and depression and it would be wrong to cover up these truths, but in the same sense, it would be wrong to only focus on these truths and not spread the word that hundreds of people are working tirelessly to help IC patients around the world. 

Plus there are countless people, myself included, who have been able to turnaround a diagnosis of 'incurable IC' and after hard work through the use of both Western and holistic medicine and treatment protocols that IC, can in fact, go into remission.  There is so much hope and help in the world of IC right now that I hope that I am able to spread to each of you suffering from IC...you are not alone and you are definitely not forgotten.  It is my hope and my truth to continue to spread the word about cutting edge IC treatments in the hope that each of you find the comfort and support for your IC.  If you have not done so I would highly encourage you to read the series of books by IC patient and advocate Catherine Simone to read her words of help and health.  It is my duty to also share my path to remission, along with the memories of pain and tragedy living with severe IC. 

This month marks the second anniversary of the launch of the ICPBS website and blog.  As I reflect back over the past two years I wonder how best to approach a milestone measured not only in the number of days but in the number of men and women who have crossed my path simply because we share a common thread of living with or being an advocate of a painful bladder disease.  An anniversary such as this precludes the passing of a celebratory cake and the donning of  tin foiled party hats. 

Most anniversaries are marked with a speech and a remembrance of the people and the moments that highlighted the passing of time.  So it is in the spirit of marking the passage of time, but just as importantly, of marking the many people who have left their mark on me because of ICPBS that I would like to honor the past 24 months since I launched a website and blog in the hopes of reaching out to a few people with ICPBS. Instead of a mere handful of people with ICPBS, close to 3700 people have landed on the front page of the website, dozens of IC patients have posted blog comments, I have had the honor of interviewing doctors thick in the battle for improving diagnosing and treating ICPBS, and my heart has been both shattered and strengthened by the courage and tenacity of spirit of men and women living with ICPBS who have reached out to me with their ICPBS stories.  My promise to uphold your privacy will never be breached but I want to publicly thank you for entrusting someone whom you have never met with the story of yourselves and your life living with ICPBS. 

As I look ahead to the next year(s) I am dedicated and even more singularly focused on increasing the reach of this website and blog and spreading awareness, advocacy and treatment options for ICPBS patients worldwide.  Your stories and your courage in the face of a painful chronic disease have forever touched me.  As an ICPBS patient, now in remission, my promise to help others through speaking aloud the painful truth behind living with ICPBS, offering emails of encouragement, and seeking out new treatments and protocols for ICPBS, is still the forefront of my mission.  Within the next year I am pushing myself to do more, to reach further, to work as tirelessly as the doctors I have had the privilege of interviewing, in order to bring even more support to ICBPS patients globally.  Thanks to each of you for two of the most inspiring years of my life. 

I am struck with great sadness over the images of the twin tragedies that the Japanese nation is enduring.  There seems to be a lot of darkness and tragedy in the world right now and I hope to never have blinders on to only focus on what is solely in front of me.  I know too well how easy it is to be consumed by a pain so all encompassing that the world does seem to, if not stop completely, fade into the periphery. 

As I see the images of the devastation in Japan following a massive earth quake and tsunami tiny prickles run down my arms as I remember similar events which occurred in Sri Lanka during the Christmas holidays a few years ago.  I remember the time frame so clearly in my mind because the tsunami in Sri Lanka happened the same year, 2004,that my body was overcome with IC.  Waves of emotions now sweep over me as I remember all that has happened since my first initial diagnosis of IC and where I am today.  I do not believe that I could fully understand the pain and suffering of others without enduring excruciating pain from IC and I hope that now that my IC is in remission that I can help others who are suffering as my way of giving back. 

A sweet female relative of mine was recently in town visiting and asked me what IC was and how it affects patients.  Her first question still stands out clearly in my head: "Can you die from it?"  I must admit that I could not immediately answer with a definitive 'no' even though the diagnosis is not a terminal one, like cancer, but it is just as final in that that it is determined to be an incurable disease.  In a flash I remembered that so many times I felt that I had died when IC consumed my body and who or what that was leftover was not really 'me'.  I also thought of my dear friend J.P. who passed away last year who had both I.C. and cancer and so it was very difficult for me to answer quickly.  The best I could answer was that technically you do not die from IC but many IC patients wish that they could die swiftly after enduring years and years without sleep or relief from the constant pain.

My dear cousin, one of a handful cancer survivors in my family, I thank you for your interest and your questions about IC. It is in these moments that I find the unexpected gifts that surviving IC has taught me: strength enough to educate people who have never heard of IC with strength leftover to support others still in the swirling, murky aftershocks of their own private earthquake of pain and grief.  Tonight I send out prayers for all who are suffering this week.

As the final days of October taunt us filled with falling leaves, frost-covered mornings and jack-o-lantern grins from front porches, I am filled with a sense of hope that this month was also full of others spreading awareness about living with IC.  My hope for the coming Octobers?  Blue ribbons worn proudly next to pink ribbons in solidarity.  Although October is the official month for IC Awareness it is important to remember that all of us IC advocates and patients must continue to raise awareness of IC the other eleven months of the year. 

This year I will partake in Halloween festivities with local celebrations happening all weekend long.  Yes, I am even going to dress in costume this year as a Steampunkesque vampire, but I still hold in recent memory the Halloweens in which nothing seemed scarier than living the rest of my life with IC.  Depressed by the IC diet, unable to eat a single piece of Halloween candy, and the thought of wearing a tight Halloween costume left me in tears.  To me IC was the scariest costume anyone could come up with on Halloween!  So this year as I cinch my blue corset (blue for IC, of course) and slip into character I will think of all of my IC sisters and brothers battling this scary disease every single moment of every single day.  I still can't eat the Halloween candy or drink an alcoholic beverage, but I can revel in the celebrations and feel a part of something cultural and ritualistic.  But IC will always be a part of who I have become and that is neither trick or treat. 

Let me set the record straight.  I have never been diagnosed with a terminal disease.  I have, however, endured over a year of 'what ifs', invasive and painful medical tests, medications that do not work and questions by friends and family who did not understand that there was something definably and medically wrong with me, even though I had no official diagnosis to provide them (or myself).  I struggled for months as I researched on line all of the possibilities of 101 seemingly related conditions, diseases and ailments that all of the pain and symptoms might be. 

When I stumbled upon the unknown and unpronounceable disease known as Interstitial Cystitis on the Internet, my heart and my bladder clanged in matching sombre notes: This is it.  But my head did not want to believe a diagnosis of IC with its haunting and horrific definitions which begin with the word: incurable.  Please let it be anything but IC!  My mind cried.  When the doctor finally stated the words Interstitial Cystitis to me, the words circled and circled and circled the room until they found a place in my saddened heart. 

I thought these words prior to, during the diagnosis, and after diagnosis of IC aloud to a few close family and friends: Why does it have to be incurable IC?  I wish that it was cancer!  I have to live the rest of my life with this excruciating pain? I want to die! 

So please understand me, dear readers, when I say how difficult it sometimes is to hear and see all of the very widespread awareness/coverage/funding for cancer, while IC still gets minimal press.  I somehow doubt that it was by accident that the IC supportors, associations and patients made the month of October the official month for IC awareness, sharing the month and very much overshadowed by breast cancer awareness. 

It makes me wonder: Do people have the same circling and dizzying feeling when the doctor confirms their suspicions and announces they have incurable cancer?  Do their lives pass before their eyes?  I try to understand what this moment must be like and I try to be supportive, sympathetic and empathetic to this sad and devastating diagnosis.  Yet, until that moment happens I cannot imagine it correctly.

But (and bear with me please) I do sometimes wish for the same wave of empathy to cross someone's face when I explain that I have been living with a chronic and painful illness for five years when I tell people I have IC.  For there to be an instant of recognition, not only of the disease but of what living with the illness is like and how it affects my daily life including my food choices, relationships, etc.  I would love to see large corporations and heavy-hitting celebrities throw their status and their charitable tax-free donations towards finding a cure or better treatment protocols for IC (and Fibromyalgia, MS, Lupus and all of the other painful chronic conditions that millions suffer from) with the same conviction that they give towards funding cancer research.  I wish when I wear a blue ribbon or post one on Facebook that other people ask how they can support me as well as others struggling daily with IC. 

Living with IC can feel like your life is rushing away in front of your eyes and you become two people: me before IC and me with IC.  With a diagnosis of cancer there are two outcomes: overcoming cancer or passing away.  With an incurable and painful disease your outcome is: to live your life (and who knows how long that will be) with the pain and symptoms and often with the chance that the pain will increase with age.  Thoughts of suicide frequent many of us with IC (I had them.  I am not ashamed to admit this).  Life with a chronic disease colors everything around you. Death seems like a good option sometimes. 

If you've stuck with me this far let me reiterate that I have lost family members and, very recently, a dear friend to cancer.  Sadly, my friend understood what it is like to receive a diagnosis of two painful chronic diseases (one of which was IC) and then after living in excruciating pain for over three years she developed and then later succumbed to complications from breast cancer.  Our friendship will always be sacred to me and if she were alive I know her opinion of which diagnosis was the scariest for her to endure.  Along that same vein, I have a close family member that is living each day with a diagnosis of terminal cancer hanging over her head.  When we spoke recently I had a clarity about the whole terminal illness/chronic illness dilemma: we each think we want the opposite diagnosis, but we are incapable of changing what the fates have handed to us.  So we try to learn the lesson, hug our loved ones and await the final chapter of our lives. 

For those of us with a longer waiting period (and with chronic pain) I say: Stand up and let your voices be heard about what it is really like living with IC.  The more aware people become about IC the more funding, research and, perhaps, empathy, will be raised.  It is a Pandora's Box filled with equal parts sadness and enlightenment if we ponder the which is better/worse incurable disease/cancer scenario.  So I will close the door and turn the key on this post by saying that we are all courageous fighters.