The 'I See' in IC 05/13/2012
There are memories buried deep inside of us, whether or not we remember or acknowledge them, they are there, swirled in the whorls and crevices of our hearts like the secret shadow space inside a nautilus shell. Memories in our minds are those ever-changing ephemeral things which morph and fade and change color with time and our current connection to the world around us. I liken them to watching a sunset every evening and even though you are watching the same celestial event and thinking to your mind's eye 'remember this one, always' your memory of the colors, the clouds, the breeze and your surroundings change each and every time. But muscle memory is markedly different than memories stored in our brain: it does not forget, and it eventually seeks out attention, usually through sudden and urgent pain. My experience with IC has definitely followed these thoughts: what first seemed to happen to me overnight was actually the proverbial final straw on the camel's back after many years of illness, sadness and pain. Except the straw was one more sad family event, poor diet, stress and birth control pills (my theory) and the camel's back was my bladder and vaginal area. It was only when I had traveled halfway through my journey back towards health from IC did I realize that overnight was actually fifteen plus years of hard times, abusive relationships and never facing some demons from my childhood. The pain in my vagina and bladder became the Siren's call, calling out for love and attention from the island of my own isolation and emotional pain. Earlier warning signs years prior had gone unbidden by me, the small incidences of IBS flareups, chronic yeast infections, and my ever-present anger management issues which erupted while driving or over the phone at the smallest hint of infraction from the cable or phone company. Now that I am in remission (I do have the occasional flare ups from food or stress) I sometimes quietly tune into the tiny workings of my body, like so many fireflies sparking in the Illinois evening, I search for the flares of warning. My pathway is clear before me: no more alcohol; food should be as pure and clean as a farmers diet in France in the 1800s; supplements should be taken daily, physical exercise is a must; stress should be kept to a minimum; toxic relationships should be severed; life and love should be embraced. If I stray from these truths I learned from recovering from severe IC I can feel myself slowly slipping into the embrace of pain once again and I find myself slightly panicking to get myself back to base-line. But base-line for me is a place of simplicity, happiness and joy, where I acknowledge that dark times have occurred but I release them without allowing them a foothold in my body, mind or spirit. That is the 'I see' in 'IC'. Add Comment All that remains 05/06/2012
When your two constant companions are fatigue and pain you see the truth about what remains, a clarity of fortitude and of purpose of what in life matters. Breath,food, rest and the comforting words of someone who cares and who tries to understand, that everything else has burned away, a pyre filled with the sticks and fragments of your previous life, now cold ashes and memory. A child's laughter makes you smile through the pain like a few lines of poetry can stamp words of hope upon your weary soul. What remains is this: fortitude, this day, this moment a compass with its needle only pointing one direction, towards hope that someday the pain will be the memory, tattooed upon your heart. Some moments in life flicker and disappear like the amber lights of fireflies on a humid mid-Western summer night. Fireflies still feel me with wonder along with all of those hushed moments of childhood where every little thing that you look at touches you with its innocent blush. Growing up in arid Colorado where fireflies dared not hatch in our cool mountain air, fireflies were a special part of summertime while visiting with my Illinois relatives as a little girl. I have reflected a lot upon my childhood and on all of the people and memories which left their imprint on the woman I have become. I hope that the good memories are a foil to all of the dark moments which have changed me forever: the pain of IC, the sadness of losing friends and family members, the struggle to comprehend how life does not always lead you down the path laid before you as a child. Like the signals of fireflies sparking in the inky blackness of night, I have had many profound moments meeting people all over the world who are touched by IC. Today marks the third anniversary of the ICPBS Support Website & Blog and I am filled with a renewed sense of passion for helping IC patients in ways beyond how any email communication, blog entry or medical doctor interview could ever convey. When I started this journey three years ago I hoped to help a few people with IC and had no idea the number of people who would contact me: IC patients, caregivers, pharmaceutical companies and wonderful people from the medical community. I still see your sparks of light in the darkness, tireless as the firefly, and I want to continue to bring you hope and information for cutting edge treatments and care. Thank you all for three beautiful years! On Strength 04/19/2012
My significant other calls me his Willow. For many years I loved the pet name, assuming the moniker was because of my thin frame, long nose (he also calls me his greyhound but that is a story for another blog post), and a play on my last name of Willis. Over the years he confided in me that although he initially called me willow because of my willowy frame he said the name matched me further because I could handle anything that life hurled at me, sometimes with gale-force wind, and I would bend but not become uprooted. A strength he has matched with mine time and again, my twin willow with our arms hooked together yet also reaching up to the sunshine, our roots grounding us firmly. When IC overcame my body there were many times I thought that I did not have the strength to make it through one more day. It is because of a few close friends and my dear fiancee that I found a strength that I never thought I possessed, hidden deep inside. I encounter this same strength every day whenever I 'meet' a new IC patient across the many miles. Hearing their stories my heart squeezes at the amount of pain that they endure, the self-catherizations, the nights spent asleep on the bathroom floor, their tales of family and friends deserting them when they need them the most. Yet, they wake up every day and find the strength to not only care for themselves, moving about the world in a body now riddled with pain, but many of them are still fulfilling roles of wife, mother, sister, coworker, or caregiver to an aging family member. Many IC patients are quiet about their disease and of their horrific pain. Some of my closest IC friends are artists, writers, wives and passionate and caring friends to me. Their strength becomes my strength and I revel in their fortitude and their resolve to live a fully developed life in spite of their pain. Strength has many names and many faces, just like those of us living with IC. You see we are all willow trees. New IC Clinical Trial: LiRIS for IC Pain 04/07/2012
Announcement: There is a new IC Clinical Trial seeking IC patients to test out LiRIS, a pretzel-shaped silicon tube filled with Lidocaine gel. Lidocaine is a local anesthetic used to treat other conditions (such as in the mouth during dental procedures) and might be helpful for the pain associated with IC. The clinical trials are available throughout the US and an initial questionnaire is necessary for pre-screening and enrollment into the trial. This trial is listed on the US National Institutes of Health: www.ClinicalTrials.gov For more information and to access the patient survey to see if you qualify for the LiRIS patient trial please go to: www.InterstitialCystitisStudy.com and updates can also be found on their Facebook page at: www.Facebook.com/ICstudy "Secret Suffering" Book Review 03/31/2012
I stayed up until midnight last night reading "Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships" by Susan Bilheimer and Dr. Robert J. Echenberg. I did not plan to stay up that late reading but I devoured this book, my heart and spirit devouring every word, pelvic area illustration, and countless interviews by women suffering from chronic pelvic pain (CPP) and how this pain affects their lives, jobs, emotions, relationships, like rain soaking into the dry soil of my soul. This book is well-written, empowering and compassionate and finally gives a voice to the millions of women suffering from severe pain in their most intimate body parts. Susan Bilheimer, the author, has suffered from CPP for many years and her personal story of suffering and how it affects her relationship with her husband is woven throughout the book. It is her complete understanding of how completely CPP encompasses every aspect of her life and her passion to tell the stories of other women suffering from CPP that this book was written and we should all thank her both for her courage and her tenacity for both writing the book and collaborating with so many incredible medical experts from psychologists to urologists to the book's co-author Dr. Robert J. Echenberg (who was featured in an interview on this website in January). This book has helped me to understand how my own CPP symptoms developed in early childhood and how all of those seemingly unrelated pains and ailments I experienced as a child (emotional trauma, chronic headaches, TMJ, IBS and scoliosis) contributed to unresolved and unhealed muscle memory stored within my nervous system well into my adulthood. When I began adulthood without resolving any of those physical or emotional traumas and pain, my poor diet, high stress (and an abusive relationship) ultimately 'forced' IC, dyspaureunia, vulvodynia to seem to 'erupt' overnight, when in fact they are interconnected pain components from having CPP. As Dr. Echenberg describes it so eloquently and is trying to teach the medical community that with CPP, pain IS the diagnosis! "Secret Suffering" should be,in my opinion, read by every CPP patient whether you suffer from IC/PBS or related diseases this book will give you great insight into the female pelvic anatomy, how the musculoskeletal anatomy affects CPP, and how non-invasive treatments and therapies should become the new treatment protocol. Another very important aspect that is covered with great compassion and detail is how CPP affects intimate relationships, whether in a long-term relationship, dating and it also provides information for both straight and gay women. It was very brave and important for Bilheimer to include interviews of the spouses/partners affected by CPP and to share their side of the story as well. Nothing in this book is sugar-coated or left out which is exactly how CPP is: embarrassing, loud, and unrelenting pain. I cannot recommend this book more highly as it is truly one of the better books written collaboratively by patient and medical doctor that I have read in a long time. There is so much compassion, caring and hope conveyed in this book, in spite of the difficulty of living with CPP and the difficulty in not only gaining a diagnosis but by the treatment of CPP patients throughout the US (and world) which is to say, dismissed, talked to in condescending tones, or made to feel that they are making up the pain in order to seek out drugs. The other promising and hopeful aspect presented in this book, as I mentioned, is the unrelenting drive of Dr. Echenberg and all of the medical doctors and experts presented in this book to provide their current and future CPP patients with the best medical care and experience within a medical setting than most have previously received. For the millions secretly suffering from any of the CPP diseases I urge you to buy and read this book immediately. Share it with close family and friends and with whoever you share your intimate life with. Your pain now has a voice and some incredible doctors, researchers and noninvasive treatment protocols that can bring you great relief from your pain and great hopefulness for your future. On Hopefulness 03/24/2012
There is so much in life that is full of paradox and living with and then recovering from a painful disease is no exception. When IC (and all of the other painful related conditions) fully encompassed my body I could no longer remember what it had been like to be a healthy person. The harrowing days trying to work when all I wanted to do was lie in bed and scream and cry in pain, or both. Every drink and bite of food became acid on my bladder and vagina. And the depression? The darkest of blues slashed with shards of sadness. Now that my IC has receded to the memories and days of some of the most hopeless days of my life I look forward to the future with both hopefulness and gratitude for the gift of well-being. Remembering the pain and sadness is somehow easier than it was to remember health and light when my body was riddled with pain. I have no explanation for this. But I do know that I am forever changed by the pain and the life-altering affects of living a life without food, alcohol, socializing, and sexual intimacy for each day of those six long years. There is hopefulness to be had for I know that I am not the only IC patient experiencing remission. Look to messages of hope written by actual IC patients from all over the U.S. on the ICA and read the books by Catherine Simone and Amrit Willis and you will know that hope and healing are always possible. I wish you days of love, encouragement and hope from all of your doctors, friends and family. An Update on Favorite IC products 03/18/2012
I have been researching as well as trying some different products for IC and related conditions (such as IBS, headaches, tinea versicolor, vulvodynia) and thought it was time for an updated list of favorite IC friendly products. Again, and this goes hopefully without constant saying, but please check with your personal physician before trying any of the products or supplements listed here. Some of these items might still be considered 'experimental' so please conduct your own research prior to trying any of the products listed below for your IC symptoms.
http://www.healthyawareness.com/articles/yeast-syndrome-symptoms/interstitial-cystitis-and-bladder-pain.aspx http://www.ic-network.com/handbook/naturalfoodsupp.html http://www.aviva.ca/article.asp?articleid=21 Together: Poetry 03/10/2012
Like the cry and call of the doves, mourning the death of winter or of loss there is recognition when there is pain shared. Across the miles or the salty ocean or only across the table, picking up your coffee cup you sigh and my soul awakens and stirs. "It hurts to breathe" you say, and my heart fractures in slivered understanding of your pain of body and of mind. Yet there is solace and comfort in the sharing, of the darkness and of the hopefulness that binds us, a talisman around our neck that we cling to in the darkness of the night that sometimes, is our day. The earth is stirring, getting warmer and friendship is both the sunshine and the springtime ending the blackness of winter. Together we carry our pain, in our hearts and with our hands open wide, we cling, we yield, we live. IC Reflections 02/26/2012
I did not grow up next to water. I cannot speak to the mercurial changes of the sea with its only constant the ebb and flow tied to its mistress in the sky, the moon, matching these changes by her waxing and waning amongst the twinkling of the starlight. The ridges and spine of the Rocky Mountains, ever changing from purple capped with white in winter, to the deep blue black of sunset framed in gold by the setting sun being the one constant witness to my time in its shadow. The mountains hold the ghosts of my childhood as I camped with my family amongst its hills filled with pine and aspen trees. As I grew into adulthood and moved from my childhood home to my own apartments and houses throughout the city in its shadow, I was in awe by how he slightest movement in proximity to the mountain range could so drastically change my perception of my life. Some of my happiest moments were when I lived alone in a 1970s house built into the mountainside of a town whose history first included Ute Indians and then settlers from New York City, Boston and England who fashioned the town into a place of health and restoration for the elite among them with families suffering from tuberculosis. I was so happy with my little place with its winding stone stairway, covered porch and the ability to decorate on my own terms, with my cats and a new love in my life who occasioned to stop by. Every crevice of the covered porch covered by twisted branches that looked like snakes or birds, feathers and beautiful rocks from every geologic time period that we could find. Or maybe we just liked the sparkle of the pyrite, quartz and fool's gold? Along with the constant companion of the mountains my life has always held another element that caused its own shadow over my life: pain. It would take leaving my little place in the mountain time and moving deep into the heart of the mountains for me to experience some of the worst pain of my life: Interstitial Cystitis. Instead of a place of beauty and solitude I felt betrayed by mountains as if the sentries formed from platelets pushed from the core of the earth was somehow responsible for the sheer pain inside the core of my being. As the IC began to infiltrate and take away food, wine, love and outdoor activity I withdrew into myself and resented the loss of my former self. It was when I began to heal my body in spirit, body and mind that I began to feel the urge to hike and enjoy being outside once again that the mountains began to heal me further. The crisp mountain air filled with the scent of heated pine needles, sage and lichen soothed my soul when nothing else could. The crunch of the gravel beneath my hiking shoes became the sound of my liberty from the pain. I am too small to move the mountains but the mountains will always have the ability to move me. | ArchivesMay 2012 CategoriesAll |
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