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.

"But you don't look sick."  "What could you have gone through that is so bad, you are too young!"  "It can't be that bad because you still work."

Locked inside along with our private hurts from comments made from people who do not understand the daily life of someone living with chronic pain, and nestled next to the child inside of us who longs for a hug and to be told that everything is going to, someday, be ok, sits the pain that bore us into the world filled with comments in the first place.  We often to have to mask the pain as we go about our daily tasks of work, taking care of families, running errands and juggling the myriad appointments to go to the doctor, pharmacy and perhaps to simply have a massage.  IC patients can be young and outward appearances might appear to be quite healthy and vibrant. 

We are the sufferers of hidden pain in a world that needs to see the battle scars of pain in order to better understand our suffering.  So many times I wished that I could pluck out my scarred bladder and show them how painful it became when it filled with urine or if I ate a food that caused a sensation of an acid wash to overcome my bladder and vaginal area.  To unmask myself even further and show the most sacred of places which scream with pain with the slightest of touches.  How to demonstrate to the world the emotional scarring that occurs from suddenly finding oneself unable to be sexually active due to instant and searing pain?  If IC patients don't appear sick it is because we have learned to wear the mask that society demands from those of us in pain but without external scarring to prove it.  I unmask myself each week in the blog and although I am sometimes left raw and naked I feel it is my duty to un-hide what millions of people have to hide every day.  The truth of IC is in both the hidden and the unhidden pain. 

Incredibly it is that time of year again when we look to the summer weather to enjoy time with family and friends and to contemplate a journey away from the comforts of home.  For an IC patient that thought of traveling away from both the comfort and safety of home can create a feeling of panic and dismay which greatly outweigh the desire to travel. When the knowledge of a refrigerator stocked with IC friendly foods, a restroom and toilet cleaned and arranged for a multitude of use, and a medicine chest filled with IC medicine and products which help in flares (ice pack, heating pad, epsom salts, douches), all  hold you to your home as an IC patient afraid to travel and venture outside your home. 

Once again I humbly offer some suggestions for traveling with IC-from the perspective of a road trip as in previous posts I have discussed some simple steps I took to ease my fear of flying.  So with that in mind I offer you some suggestions to help ease the panic of a car trip as an IC patient:

• Pack a cooler of IC friendly foods, especially snacks that are IC friendly for you so that you aren't tempted to eat foods that might cause a flare up or you stuck in a gas station filled with, well, bad gas station food. 
• Pack your own bottled water that is IC friendly for you.  I have personally had IC flares from drinking tap or bottled water that was outside the norm of what I had tested to be safe for my IC symptoms.
  
• Plan to take extra stops along the way to use the restroom.  Remember that a trip is about the journey AND the destination. 
  
• Some women are comfortable using either a female urinal or Depends while car traveling. 
  
• Pack good toilet paper and moistened wipes. 
  
• I find that sitting on pillows can greatly reduce the vaginal/back pain associated with IC while on long car rides. 
  
• Bring along your iPod filled with soothing and relaxing music to listen to in the car (preferably not music with the ocean waves mixed into the background)
• Plan ahead for your trip and be sure that wherever you are staying whether hotel or with friends or family that a refrigerator and stove await you so that you can easily make your own IC friendly meals without fear of contamination of someone else's cooking.
  
• Pack your ICA 'I have IC card' which include information about IC to present at a gas station or store in which  you might have to make an emergency trip to use the restroom.  It is Federal law in the U.S. that people with a medical condition be allowed access to any public restroom.

I hope that some of these suggestions will be helpful for you as you venture out into the world this summer.  Be encouraged by what you are able to do with IC and you will amaze yourself with the knowledge that you can, in fact, travel while having IC.  Happy and safe travels to each of you!

Slipped into the world
born anew
both filled
and washed in blood,
my cries filled the morning
light
flooding into the white hospital room.

I am here!
My voice,
an early premonition to my mother:
"This one will be loud,"
as she pressed me to her breast
and held me to herself.

Born without twin companion
I grew used
to learning,
from people older
than myself.
And of how a ladybug's
red beauty in the summer
quickly turns to dust
by fall.

Alone with my thoughts
and with the beautiful
heroines unfolding
out of fairy tales
read regardless of the weather
outside my bedroom window.

Oh, Pippi Longstocking
to have your russet braids
and a life filled with adventure!
But no I would rather be the Snow Queen
and have friends of forest animals
and of little devoting men.

Tales that always ended
with happiness
and forest friends
wrapping a garland of ivy
through your hair
And sunlight filled
all of their days.

I fear I either
read the wrong
fairy tales,
or I read them wrong.
For born out of my hips,
of my pelvis
and of my womanhood:
A twin.

In place of hues of golden,
a grey subdued mirror
image of the self
I thought I was,
or was becoming.
In her place a twin
born from pain,
and of longing for the former self,
to arise out of the ashes
which fill my mouth
along with the terror
of the pain
and of the loss of myself.

The twin still walks beside
and behind me.
I feel her fingers
in my hair
and her hands
reaching,
grabbing my own
when the phantom pains
return.

Our umbilical cord is filled
with memory's blood,
sleepless nights
and the Pain
which is granted
a name worthy of
capitalization.

I am the twin
and she is me,
together
one and the same
a duo,
a duet of pain
and remembrance.

We now walk the earth
together,
searching out the shadow lands
of our pain secrets
and the gifts
that only a twin soul
understands.

This is not going to be one of those touchy feeling, 'I'm glad I had a horrific, suicide-thought inflicting painful disease which wrecked havoc in my bladder and my private female parts, because we should always find something to be glad about.'  If this is shocking for some of you let me state that I have written posts like this previously and yes, I am grateful for the lessons that I have learned about myself after overcoming an incurable disease, but it would be wrong of me to make it seem as if living with IC was in any way joyful and that I did not live those five years angry, depressed and not completely sure that any of the work I was doing to overcome IC would in fact work for me given the low margin of studies done which claim a high threshold of IC patients going into remission.  It made me angry to be treated poorly by male doctors who dismissed my symptoms of bladder and vaginal pain time and again.  I was furious to have to repeat painful and invasive tests due to errors on the doctor or their staff's incompetence. 

I was angry when people who had never lived with severe pain 24X7 that never left your side, told me to 'find something to be positive' about.  That said while they crammed food into their mouths in front of me that I could no longer eat.  I swear I reached a point with my IC that I was allergic to my own skin, sweat and tears!  The smell of cigarette smoke alone would cause bladder pain-yes, this made me angry too!  And the word angry could never completely define the dark whirling passionate infuriating feelings I had that I could no longer be intimate with someone who I loved more than life itself. 

I feel that by further repressing our angry emotions that might have been in place prior to getting IC, that if we are told or believe that we must put on a happy face no matter what, that we are doing a great disservice to ourselves and to our bodies.  I am not saying to live in anger 24X7 but I am saying to acknowledge that anger is a normal and healthy part of the process and emotions that accompany a life-altering change such as one day waking up with a debilitating illness.  I am a huge proponent of finding the means of allowing the anger out.  Some suggestions might include: journaling, driving to a remote location and screaming out what you are angry about (I am not joking, this has helped me before), find a licensed counselor, pastor or psychologist to work with and acknowledge all feelings you deal with while having IC, including anger.  Letting people know simply "I am not in a 'happy' phase right now.  I cannot repress my feelings so if that bothers you please come back in (and then give them a time frame to return).' 

The idea of being honest with yourself and others about experiencing an intense emotion such as anger is not going to be easy for yourself or for people around you initially.  But I have a feeling that eventually you will appreciate each emotion instead of pushing them down and forcing yourself to pretend to be in a constant state of happiness.  Oh and one more thing: I would highly suggest reading at least the first couple of chapters of Barbara Ehrenreich's book "Brightsided" as I had a lot of 'ah ha' moments about how society has taught us that one is 'supposed' to act while they have either a terminal or chronic pain disease.
(P.S. Today I am quite happy as the lilacs are blooming outside and I'm writing this blog post with a spring breeze running through the office and my shoes are off.  I am a little upset that I am all out of black tea, though.  Upset, but not angry.)

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. 

Even celebrities know the truth of it: it is hard to stay in a relationship these days, but it is even doubly difficult to do so when placed in the middle of both internal and external pressures.  Songwriters hoped their words have a more lasting impression once set to a memorable tune.  As if a melody can stitch the words into your heart permanently.  The examples of staying with your mate through thick and thin applies to both sexes:

'Stand by Your Man' and 'Are you Strong Enough to be my Man?' are just a couple song titles that pop into my head as I remember the songs with the theme of togetherness in spite of the world pressing in.  It seems so easy to stick by someone's side when the money is coming in and you both have your health.  It is a far different story when one person in the relationship becomes ill.  When I say ill I do not mean to imply someone with an every day common cold or allergy, but someone with a life-altering illness or accident that leaves that person in utter pain and shock as they are forced into a life completely different and unalterable than the life they lived before.

Sadly, a devastating illness such as Fibromyalgia, Lou Gehrig's disease or IC are too much for some individuals to handle and instead of staying in the relationship through 'thick or thin' or 'for better or for worse', they leave and in their wake leave someone more emotionally hurting than the summation of their physical pain.  A wound like that takes a very long time to heal.  So when I read IC patient's tales about spouses or boyfriends/girlfriends leaving them because they could not deal with supporting someone with a complicated and serious disease, my heart goes out to them.  My only words of advice would be to know that if they cannot support you in your pain how can you trust them to support you when life is only paved in roses?  This is an unreasonable and unreal view of the world.  Although the pain of losing them is real I would hope that someday you might see that their leaving you allowed you to grow into a better person. 

Living with a chronic pain disease is not an easy thing but it does leave one with the ability to look at what (and who) are really important in life.  Life is whittled down to its barest essentials: sleep, food and love.  Sometimes the love of  a good friend or family member fills in the gap where a romantic partner might have once been.  Hold on to the people that fill you with love and support and let those go who make you feel guilty or ashamed for feeling pain and for 'getting' a chronic disease.  The people that stand by your side through thick and thin are the only people that should really matter to you. 

Six years ago inside a 1920s cabin, complete with wood stove and a white claw foot tub, perched high in the mountains of Colorado lived a woman and a man and their cat family.  This little cabin and their lives merging was supposed to be a colorful new thread in the tapestry of their lives together.  Bookshelves were bursting with books from both of their interests and the cats, used to living with only one or the other of us, began to form a larger cat family.  Days were spent 'in town' shopping for art and the perfect furniture to fit into the little cabin in the mountains.  All seemed well, except when you take a closer look, all is not right for this woman and man so desperately in love: tragedy and loss struck within one month of moving in together. 

His heart began to grieve.  Her bladder began to ache and that ache turned into severe pain.  Nights were spent curled up next to the claw foot tub to awaken every twenty minutes to use the toilet.  Food and wine, once a gastronomic indulgence to the end of a long week, became intolerable to the woman.  Pain now throbbed in her most intimate of places.  The man and the woman would never be the same for into their cabin and their lives and their love, a monster named Interstitial Cystitis had clawed its way into their midst.  The monster demanded attention and irrevocably changed their lives, their relationship, their world.

Six years later and the monster of IC, its claws released their hold on my bladder and my intimate regions, but I find my heart constantly looking and listening for the sensations of the monster to wreck havoc in our lives once again.  With every occasional bladder infection the panic clutches my throat: Is this really IC?  Is the remission over?

My IC is in remission.  It took five very hard and dedicated years using a multitude of doctors, IC diets, herbs and blood work.  The list goes on an on.  The monster that I fight alongside the ghost of the IC monster is one of legitimacy within the world of IC.  Sadly, in our society it seems that if you claim to be healed or in remission that your experience, and therefore your words about IC, are not as potent as someone in the deep throes of IC.  For every second of every day living with the pain and symptoms of IC that I cried, urinated often, and bitterly ate ten "ok for IC patients" foods, I longed to find someone who had made it to the other side, if only to speak to the person and to hear that remission is possible. 

What happened in our society that the scales are imbalanced that we call (and justly) cancer patients 'survivors' when they overcome vicious cancer, yet when someone with an  incurable disease such as IC is able to work just as hard and their symptoms and pain go into remission, they are not deemed as IC survivors?  I boldly claim that I am an IC survivor.  I research and blog tirelessly for all IC patients and it is my heart's truest desire that each of you reach remission.  So allow me to be one of the first to declare that when you go into IC remission you can call yourself an IC Survivor! (Although, as I reread this I think that I was wrong...even someone enduring the day by day pain and struggle of IC

Slowly, gently night unfurls its splendor
Grasp it, sense it, tremulous and tender
Turn your face away from the garish light of day
Turn your thoughts away from cold unfeeling light
And listen to the music of the night

Close your eyes and surrender to your darkest dreams
Purge your thoughts of the life you knew before

-Music of the Night, Phantom of the Opera

    The dark of night holds connotations of terror, death and the unseen in most aspects of current society.  Whether in books, movies or musicals such as Phantom of the Opera, darkness is when nightmares are revealed and when creatures deemed unfit for the light of day can haunt and play.  When IC racked my body with incalculable pain I felt that I was living a waking nightmare in which I was tortured with pain and constant trips to the bathroom.  Now that my IC is in remission and the pain that was my constant companion of five years is in the shadow land I still feel its presence like fog clinging to the underside of a footbridge. 
    During my darkest days I searched my mind's memory for what it was like to have simply five minutes free from the pain, but as much as I tried, I could not remember what it was like to be pain free because the pain was so intense.  I thought that when my IC went into remission that the same effect would occur and that I would not be able to recall the sheer pain and terror of IC, but I find that the pain memory surfaces readily, a night demon surfacing during the daylight.  In the shadows of my memory I sometimes have a silent scream when I have a minor flareup from food or from monthly hormonal changes as I wonder if this could be the flareup that sends me back to pain all day every day. 
    It was so easy to embrace the darkness and to dance with the Phantom of pain and darkness set to his own night music.  My life of pain stripped away friends, family, food, sex, and work that I had completely 'purged all thoughts of the life I knew before' because the life I lived before was gone.  Even in IC remission I am a changed person and I can never really go back to being the person before I was touched by pain and left without so many of life's simple pleasures.  But I am fine with this knowledge-and I embrace it!  There will always be room in my life for life lesson's and I can now say that pain is quite the teacher.  I will never forget the pain of IC but I will also strive to never forget the lessons of IC.  That being said I will always think that Christine made the wrong choice in not embracing the darkness and falling in love with the Phantom of the Opera as I always have.  For even in real life, dark fairy tales can have a somewhat happy ending, right?
 

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.