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

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!

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. 

Have you experienced that phenomenon that occurs when you read about a new author and then every bookstore you go to that author's works are suddenly featured, or you hear an obscure song that you fall in love with and then, before you know it, it hits the radio and on line waves so often that you suddenly tire of hearing the first three notes start to play?  The world of IC has a similar affect for me as it seems like the more people I write to, talk with, or connect with over email that waves of connection to a before unheard of bladder disease can suddenly connect you in profound and intimate ways that friends and acquaintances you might have known for years can never reach the same closeness. 

Articles about new bladder drug trials, doctors working in stem cell therapy and cutting-edge bladder replacement therapy now seem to leap out at me from medical journals.  Or perhaps it is because my subconscious mind is finely tuned to the world of IC, intimately understanding the searing pain of IC that rip your life and the world out from underneath your feet in an instant, that any news of finding a cure, better diagnosis and treatment protocols makes my mind's wheels spin in hopeful yearning for the millions still suffering from IC and related conditions.  Conversely, because IC is such a part of me and I am slowly becoming part of the world of IC, it still shocks me to discover women who have never heard of the disease.

When I meet people who slowly begin to put together the dots between how I eat and drink only water, coffee and tea, and I very careful about my skin and body care that they, just as slowly, begin to ask me questions.  Instead of feeling as if IC is 'old hat' I sometimes feel as if I am newly diagnosed, almost childlike, when I slowly and carefully try to explain a disease that causes pain in deeply intimate places of the body.  I am always grateful of the questions about diet, pain and how IC affects my life, but still weigh internally how much information is too much information to share in, say, the workplace?  Am I creating an HR nightmare by explaining that IC can cause painful sex and a condition called vulvodynia which can cause pain and inflammation of the vulvar region for women?  Usually I skirt around the issue saying IC causes severe pain in the bladder and other intimate places.  I sometimes feel myself blushing or my eyes getting large trying to explain, without explaining that there is so much more to the suffering of IC patients than I can readily convey in a brief conversation. 

When I encounter people who have never heard of IC I am reminded that our work to spread awareness and therefore draw an interest in funding support and research for foundations such as the ICA is still an endeavor that needs attention.  So as I look in the rear view of my life I still see IC and its letters spell out to me that people with IC are numbered in quantities larger than first appear and that they are a constantly reminder as I move forward that is still important to look back and be reminded that there is still much work to be done in the world of IC.  I can change out the soundtrack of my life but the world of IC will always be a part of me.  

  This blog is for the doctors who thought my bladder and vaginal pain was one of psychology, not of physiology.  And it is for the duo of urologists, the first of which rolled your eyes while you scoped my urethra and said I didn't have IC because I didn't have the ulcers, and for the second who laughed when I told him the medications made me feel worse and that I wanted to approach IC holistically.  It is for the friends who stopped calling me once I shared with them about my new private horror of a life lived with chronic pain.  I cannot forget the co-workers who made the nasty comments about my IC diet and openly wondered if I was anorexic for eating the way I did.  And a special honorable mention should be paid to the still unknown person who removed my carefully prepared IC friendly container of food from the shared work refridgerator and left it out at room temperature for 4 hours so that you could pull out your Coca-Cola for your break. 

   Without all of your doubts, poor treatment and 'your way or the highway' approach to treating or discussing my IC I would not be as well as I am today.  If I would've listened more and believed that my pain and symptoms could not improve then I would feel the same way that I did six years ago.  Perhaps I would have acted on my thoughts of suicide.  Or perhaps I would have been forced to go on disability because you did not explain to me that untreated IC can continue to cause further tissue damage.  If I would have continued to listen because you had the inititals 'M.D.' behind your name, I would not have found my voice to question a urologist that gives cystoscopys without anesthesia or lidocaine.  And I would still consider as a friend someone that I could not explain my reality of chronic illness and pain without fear of ridicule or embarrassment. 

   Thanks to each of you for pushing me to look deep within myself and to seek out the answers for healing locked inside my DNA.  I know now that there is no secret pill for curing IC-but a lot of hard work, an IC friendly diet and being surrounded by supportive family, friends and doctors goes a very long way towards feeling better. I do wish you all well but mainly I wish that over the past six years you have realized the damage that such attitudes can and will do to the people you address as: patient, client or friend.  Thankfully I used your treatment of me as a gift of how not to treat people.  And for that, I will always be grateful to each of you.

There is something calming and peaceful about writing the first blog post of 2011.  Outside the snow is falling down making the world smell fresh and clean with winter's white rain.  As I go through the motions at my new job or while folding laundry at home, snippets of my conversation with Dr. Matt Rosenberg flit into my thoughts: IC is a symptom diagnosis...IC can be diagnosed and treated if the PCP nows to look for pain, urgency and frequency.  I wonder how many people will be diagnosed with IC in 2011? 

I hope that the work of Dr. Rosenberg and many other doctors, specialists and people who play an active part within the ICA, ICN and IC patients continue to make a stand and to fight for disability benefits for IC patients, awareness of IC continues to be spread, and better protocols for diagnosing and treating IC continue to become the new and less painful standard for this year.  I am reminded by the example that one small candle can bring light into darkness.  Each of us have a role to play in the world of IC and whether or not you have a medical acronym behind your name, we can continue to shine light and hope for millions who feel a pain and a darkness they might not have been aware of until recently. 

Currently I am reading a new book written by an IC patient and nurse and I am filled with encouragement about connections she found with IC and how consuming gluten can attribute to IC pain and symptoms.  Expect to hear great things about this book and this nurse in upcoming blogs!  I have nothing but hope and encouragement that by continuing to spread our knowledge and our experiences we can shine our small candles of hope to other IC patients.  Well I am off to refill my mug and to enjoy the silence of snow falling on the roof. 

The pumpkins are being harvested.  The candy corn, Halloween costumes and cinnamon scented candles fill the aisles of every grocery and retail store.  The irony of fall cleaning and sweeping out the cobwebs only to replace them with fake glow in the dark cobwebs is not lost on me.  With the return of fall and the approach of Halloween I started thinking: What are the IC ghosts in my closet?

Since the inception of this website I have attempted to start a local IC support group, I have had a mini article published with my IC story on the ICA, I've signed petitions to ensure Legislature continues funding research and medical care for IC patients and every week I speak with total strangers who become instant friends, dare I say family, through a commonality of IC.  Yet.  I still feel as if there is so much more that I could/should be doing.  I have tabled finding a publisher for the IC manuscript as I have started rewriting it in a more memoir based format.  I hope to carve out some time to turn some of the previous writing into published articles.  Speaking of carving, perhaps while carving out pumpkins to transform them into enchanted, glowing jack-o-lanterns inspiration for the IC memoir will hit me. 


The other IC ghost would probably be that I do not always tell people that I have IC. The main reason for this is that after five years of extremely hard work and sticking to the IC diet, my residual IC issues are such that I can ignore them and I can live my life.  I feel that by constantly giving something a name that it might come back in full force to once again consume me with pain and despair (kind of like the unnameable character in the Harry Potter series).  Unfortunately, I sometimes feel a sense of guilt to the rest of the IC community that by not constantly telling people I am in some way insincere in my advocacy for others suffering from IC.  Or I fear that people might think that my IC was never 'that bad' or question that I have it at all.  See the Headless Horseman has nothing on some of the scary double-edged sword thoughts that roll through my head some days. 

But I remind myself to remain focused at the task at hand.  The month of October is dedicated to IC Awareness.  I promise to do my part to spread the word.  Perhaps in the Mexican tradition of Dia de los Muertos I will frame a photo of the words IC and put them on a flower-laden altar next to photos of my relatives and pets who have passed over.  I will light a candle to the IC pain that has passed, the pain gone but not forgotten.  I will bake the sweetest frosted cake decorated with marigolds in homage to the huge sweet tooth that I had prior to getting IC. Perhaps the final step will be to eat a sugar skull with the word 'IC' written in dark purple frosting.  I eat you, IC to both remember and to forget. 

I will honor the lessons of IC the month of October and well into the next months to come.  And maybe I will dance with the ghosts in my closet and find peace that I am doing all I can as an IC patient: past, present and future.  Halloween tales and costumes have nothing on me.  I've danced with IC through the darkness and have won.

As the community of IC sufferers expands due to the advancement in social networking sites it would be interesting to know if our ability as IC patients to connect with one another helps us cope, in comparison to our IC brothers and sisters who suffered in silence for so many years.  Laugh and the world laughs with you, cry or suffer from a chronic pain disease and you will usually do so alone.  How much easier it is to connect with someone with IC in your state, across the nation and even around the world at all hours of the night (especially those of us suffering from sleep issues and the constant need to get up all hours of the night to urinate) by simply logging into Facebook, Twitter the ICA on Facebook, etc.

I am constantly uplifted by the news of new treatments for IC pain and diagnostics that are being tried and tested worldwide.  We are a million people strong and no longer reliant on carrying the burden of pain, fatigue and an overall change in how we interact as human beings completely isolated.  Newly diagnosed IC patients who reach out to me via this blog ask me for advice and the number one thing I suggest is finding an IC support group (whichever iteration this means for each person), and being an advocate for their IC treatment plan.  As we move towards the cooler months of fall filled with longer evenings, we should reflect on the people and things that provide us with love and support as we continue on our journey living with IC.  Once again, I am grateful to you, my silent readers of this website and blog and for your emails of support.