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 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. IC: A Lament for Equality 10/19/2011
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. Fall: Two Definitions for IC 10/07/2011
Fall. The word is both a descriptive word to describe the autumn season and an action verb which lead me to how it is the perfect season to think about IC. The season of fall is a moment caught in the middle, between the vibrant sun-filled days of activity and the slow down and read a book inside while the snow swirls around the barren trees outside. Fall is about a burst of scarlet amongst the greenery, the bounty of the garden, and with each falling leaf, you know that winter is on its way. The season gives you the sense that one should both hurry up and slow down. IC is like fall in that you feel caught between two worlds: the one in which you were healthy and vibrant and the other world where it feels like winter has permanently encapsulated you in its cold embrace. And then there is the similarity of IC to the definition of fall: to pass into a particular state or direction. I can attest to the notion of falling into the pain and circumstance of IC and all of the sadness, darkness and confusion that accompanied my diagnosis. IC was the black hole, the unknown quantifier for my future self, and the fall was a long and oftentimes scary one. I was without my internal compass, hope or direction as wave after wave of depression riddled me almost as helpless as the bladder, vaginal and kidney pain consumed my physical being. It is comparable to the scene of the angel falling from grace in order to become human in the movie "City of Angels" except my fall felt like more of a push than anything that I would have ever chosen for myself. The pain of IC can strip away the joy and beauty from one's life seemingly overnight like a cool fall evening can cause leaves to hurtle to the ground, making the tree barren and naked. Gone is summer's pretense of sunshine and promise and in its place the knowledge that things are going to getter harder for awhile, the days and evenings colder and more isolating. As you look around you realize it is time to take stock and to store up the people and things and treatments in your life that can bring you through the winter season of IC. Never give up hope that summer will return or that some of the things you let go of during your fall helped to make you a more caring person. Sometimes the Road Leads Here 09/27/2011
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. IC: Sharing is key 09/18/2011
Do you remember the moment when you first stumbled across the symptoms of IC? Perhaps it is because you yourself were struggling with the symptoms and waiting desperately for a diagnosis or perhaps you were searching on-line for diseases or conditions that matched your symptoms while you waiting for your doctors and insurance company to approve some medical tests. Remember that moment of horror and recognition as the group of symptoms matched those that you were experiencing exactly-yet you continued your search in finding diagnosis that was less horrific and more full of hope in recovery? I will never forget experiencing all of the emotions of feeling like I had suddenly boarded an express train filled with sick people when most of my life I had proudly walked to my destination, filled with hope and choice about the destination. It as I remember these feelings of my own journey to diagnosis and the choices I made over six years to put my IC in remission that I reflect upon the events of the prior week. I had the honor and privilege of presenting a brief overview of IC to a roomful of close to fifty people within my community who had never heard of IC. The look of shock and sadness on their faces as I explained the symptoms and pain on IC instilled in me an even greater passion to share the story of IC and to seek out ways of helping IC patients and their families in the coming years. Great things are on the horizon and after my brief stint into speaking in public about it last week, I am even more encouraged to push myself out of my comfort zone to bring support efforts to the world of IC. Those who hear truly want to help! IC & The Winds of Change 08/28/2011
A late summer rainstorm is blowing over the top of the Rocky Mountains and heading towards town, the wind blowing the clouds and rain and chalky grey skies blanketing out the sunshine. The wind is blowing so hard through my little house that as I write this post my hair is swirling about me like a whirling dervish. Wind always signals change, whether it means a change in temperature, the speed of waves on the water, or change in general it is the thing within nature that is heard and seen by its action (tree boughs waving, waves curling out and in) but is never actually 'seen'. Although we cannot technically see the wind, it is meant to be both felt and listened to. One of my favorite movies growing up was "Mary Poppins" and among a list of favorite and memorable scenes in the movie that stand out to me was the scene in which Mary Poppins arrives, carpet bag in one hand, large black umbrella in the other hand as she flies into the house of her new charges. Mary Poppins only stays long enough to help the children according to the direction of the wind and when the wind changes direction it is time for her to move on and help another family. "Chocolat", another favorite, although modern day, book and movie shows the main character, mother and daughter, moving from village to village with the direction of the wind. And although the mother is an independent spirit all her own, it is the wind that decides their fate and the places that they dwell. What does the wind have to do with IC? Very much indeed. Just like the wind IC changes the course and direction of our lives from the path that we thought we were on to a new course filled with pain and a sense that we no longer have control over our lives. The pain of IC is indescribable and near invisible to point out with modern medical technology (not all IC sufferers show the horrific Huner's ulcers!), yet its effects ripple through our being with the destruction of a hurricane. Left in the wake of pain we are humbled by our experience yet know that we will be forever changed by its presence. The wind can be both soothing and terrifying as one minute it is gently blowing through you hair and the next moment it is threatening to blow your house down around you. After the initial shock and terror of my diagnosis of IC back in 2005 I felt a calmness come over me like being inside the eye of a storm. Hurricane Carin was unleashed from deep within when I was told that I would have to live with the pain and fury of IC and that there was neither hope nor cure. Today I can feel the wind not only in my hair but I can feel it blowing in my soul once more fanning the flames and inciting me to do so much more within the world of IC. Although I cannot make any formal announcements just yet about what the wind has brewed within me to unfurl at full sail, please know that there are great things ahead for ICPBSSupport, but more importantly that means there are even greater things ahead for IC patients! The wind pushes me towards a new destination and each of you, dear IC patients, are my compass and my North Star. IC: Past, present and future 08/21/2011
Time, circumstance and living with pain colors the perspective of everything in life. The reality is that living with a chronic pain disease is like stinging nettles for your senses, sharpened, painful and difficult to ignore. Memory of the life lived before pain seems like a distant dream, intangible and sacred, and therefore only the good of life is remembered. So it has been very jarring indeed that I have recently started reading books, modern living magazines, and listening to music and watching movies that I once ignored when my IC held me in its vise-like grip. Although the subtle pain of IC still lingers I am able to to live a very full life and it is with sadness tinged with awe that I am now able to enjoy the pleasures of life that I once ignored and shoved into the recesses of memory in the hopes of if not stopping completely, but keeping at bay the pain of living without the music, visual stimuli, foods and movies that celebrate life and all of its passions. My heart still cries out silently remembering the days that I could not be sexually active and songs and movies filled with romantic portrayals both mocked and stung me in ways that are almost impossible to write about. The same is true for books and colors and knowing the difference between a Knoll and an Eames chair. Life with extreme IC was measured on a scale of daily pain, sexless nights, bland food, and doctor's visits. There was little room for romance, literature or learning about key visionaries of the mid-century modern movement. Friendships and relationships are that much more dear to me now that my IC is in remission because I remember when I plunged myself into an isolation so severe that most people thought that I had gone a little mad, but mainly they did not understand my severe eating habits and excruciating level of pain that warranted a hermitage of my own making. And I will never be the same person again after losing a dear friend who suffered from IC, Lyme disease, and eventually succumbed to breast and bone cancer. I feel her loss more keenly as I remember our many conversations and the advice that she gave me when we were newly diagnosed IC patients. IC blurs the lines between a fully lived life and living day to day without enjoyment. The phantom loss of a dear friend, and of 5 years shrouded in pain and isolation, follows me around like a Siamese twin, connected and forced to forever walk the earth together. Remember, the twin seems to whisper, all of that pain and loss make up who you have become. Never forget that. Forget that and you will be unable to help yourself, let alone others suffering from pain. IC Melancholy 08/14/2011
I guess melancholy is not really a word that is in vogue nowadays. Doctors and psychologists would prefer that I used the verbiage depressed or having 'the blues' but to me there is something more feminine, less long-term sounding when you use the word melancholy to describe the gut tingling, constant tears in the back of your eyes, knot in your throat jumble of emotions that can overcome one living with chronic pain. Although my IC is in remission I still am prone to IC flareups in the form of vaginal pain and pressure which still flare during moments of stress or sadness or if I veer ever so slightly away from my steady diet of wholesome foods (ever free from yeast, sugar, preservatives, etc.). Life's big and little surprises, sadnesses and emergencies can quickly flood my mind with emotions and my bladder and vagina with stress hormones which cause IC pain. Stress and pain seem to feed off one another in one of those symbiotic relationships that you would do anything to break up permanently (is there a way to divorce yourself from your feelings?). There is no way to guard oneself from painful events that happen in life but there are some ways to protect oneself from the headlong dive into melancholy. I find that I have to take daily doses of Vitamin D even though where I live I am fortunate enough that we have over 300 days of sunshine a year. Unfortunately I think that Seasonal Affective Disorder runs in my family so when the months draw closer to fall and winter I can feel my mood also growing colder. Vitamin D has many, many health benefits, especially for people with chronic conditions such as IC. Along with daily doses of Vitamin D, I take a vegan capsule of Vitamin B complex in order to prevent melancholy from taking hold. I will also be forever grateful to my support group of family and friends as well as to my animal companions who bring me daily joy and unconditional love. Check with your doctor about the dosage of Vitamin B and D that would suit your IC. You do not need a doctor's confirmation that support of friends and family can be very beneficial to your IC! And as far as animal companions go I will always be a huge advocate of adopting an animal from your local shelter. Your feelings of melancholy will drift away as your new furry friend snuggles in your arms. Between IC Patients & Friends 07/31/2011
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):
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