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.

Unfortunately I have never had a mind for memorizing verses and I have always been fascinated by actors who learn pages and pages of script in a short amount of time.  In second grade during Black History Month we had to learn a poem by a black poet and recite it to the class from memory.  Being a chicken, but also because the words meant a lot to me in spite of my young age, I chose Still Here by Langston Hughes.  The words to this simple yet haunting poem have continued to weave in and out of my head some twenty years later during some dark times of my life including when I was diagnosed with IC.

There are times when it has felt as if the words from my IC blog are like a mandala, a beautiful pattern composed of colorful words, instead of sand, poured out from my heart to try to understand the path of my life lived with IC, the words disappearing into the universe, erased and on a new journey.  I find that my words are finding a home with other people all over the world struggling with a disease known by a string of initials-ICPBS- as if we are too frightened to spell out the letters of the disease as if an acronym gives the disease less power over us.  I struggle to find the words to convey how much friendships and contacts from people all over the world living with IC means to me. So imagine my surprise when people noticed that my blog entry is 'late' and they asked me if I am ok. 

I had one of those crazy weeks filled with something strange, sad or traumatic happening every day.  Nothing that I cannot handle because if you can handle IC you can handle just about anything.  Yes.  I'm still here and I am ok.  No, I am more than ok because of the strength and support I receive from people with severe IC who take pause out of their own struggles to check on me. And thank you, Langston Hughes, for penning the poem that has been a touchstone in my life for so many years.

Still Here
been scared and battered.
My hopes the wind done scattered.
Snow has friz me,
Sun has baked me,

Looks like between 'em they done
Tried to make me

Stop laughin', stop lovin', stop livin'--
But I don't care!
I'm still here!

I know that the hustle and bustle of the holiday season can leave anybody frantic, tired and stressed but for someone dealing with pain and a chronic disease the holidays can double your pain due to stress.  So I thought that I would make a list of the things that might help reduce some of the stress of an IC patient, called here Holidays on IC(e) where the "e" stands for easy:

• Wrap gifts in bed while watching your favorite holiday movie
• Print out your list of holiday cards and addresses and keep them with a set of nice pens, stamps, etc. in a shoe box in the bathroom to work on while you're spending extra time 'going'.  While multi-tasking it might take your mind off of the pain
• Slip a little card about the ICA, IC symptoms, or a medical journal about living with a chronic illness into a loved ones gift with a note thanking them for supporting you
• When someone asks you what you want for the holidays state: "Besides a cure for IC?  I would really love if you would donate to the ICA or IC research in my name."
• Volunteer at a soup kitchen, wrap presents for children in need, etc.  the place is not as important as focusing on someone less fortunate than you
• Give homemade gifts that come from your heart
• Instead of baking cookies (I know most ICers cannot eat sugar) make an IC friendly yeast free item and include the recipe wrapped in local greenery
• Give yourself permission to rest as much as you need to
• Pause and reflect on what the holiday really means to you (not what society, your family, your co-workers,etc. believe) and be thankful for the simple moments of the holiday season
• Find something to be thankful about (why stop at just one thing?)
• Let friends/family/co-workers know ahead of time that you are on a strict diet and that it is simpler for you to eat ahead of events so you can really enjoy talking with people without having to explain why you're not eating or to become depressed that you cannot have a piece of spiced apple cake
• Remember: hugs are free and do not hurt an ICer
  

IC is not for the faint of heart, for those used to planning out each moment of their lives or for those that are unable to take action and have a voice about their daily pain and their IC treatment protocol.  So it is for all of us living with IC that I say: I have IC, don't feel sorry for me.  Instead of your sympathy lend me your ear so I can tell you about the pain and sleepless nights and about how difficult it is to eat solitary and strictly defined meals.  But then let's move on and move forward and share a cup of low acid hot tea and talk about all of the things that I've learned from IC.  Stories about how much friends and family who stand by me through thick and thin and IC mean to me; about the strength and the fortitude that is necessary in order to have a voice in a maze of doctors unversed in the complexities and overlapping conditions of IC; and about an appreciation for the small IC battles won: a food allergy overcome, a night with an extra hour of sleep. 

There is a vast valley of difference between providing sympathy and being empathetic to my IC.  One is passive, sad and lonely.  While the other is encouraging, supportive and positive.  Do not think for a minute that our IC has made us weaker for the on going pain instills in us a strength that most of us never knew we possessed.  Living with IC has been a daily reminder of all that I am thankful for: each sunset, each cat purring in my lap, each small lesson learned about life and strength and overcoming something greater than oneself, against all odds.  Like a multitude of ICers claim: I have IC, but it doesn't have me!  There is strength in numbers, and during this month of IC Awareness let us stand up and let our communities know that we have IC.  Just don't feel sorry for us when you hear the news.  Instead do something to take action to help with our cause: donate money to IC research, call or email someone you know with IC, or spread the word about IC to your family, friends and co-workers and chances are you will touch someone affected by IC.  There are millions of us ICers, with a million reasons to need your love and encouragement and support.

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.