I find that for this blog post that my words are having a hard time forming and making it to the surface of my thoughts and then finally finding their way to my fingertips to type as if words, like so many tiny drops of urine trying to squeeze painfully out of my bladder, I wonder how I can at once feel so filled up with something to say, but each word drops out slowly of its own accord.  Some of the words are painful and others simply must move out of my body as quickly as they can to pool and stream together to tell their story.  I allow them to flow out of me without boundary or barriers for it is in freedom of thought that our words form the truth.  IC leaves no room for sugar coating reality. 

With each story of IC suffering I imagine a collective sigh of pain and suffering swirling across the different time zones, with some people awakening from their night of suffering, with others rolling into their beds hoping for a few hours of rest and respite.  No matter our age, background, color of skin or continent that crunches beneath our feet, we share a commonality of bladder pain, flushing toilets in solidarity across the miles, each searching for an answer to the pain that takes away food, drink and intimacy.  Prayers for relief, comfort and understanding rise up each morning floating with the pollen, dust and the calling of the birds, swirling in a vortex of hope that is not bound by religious context.  'Please take away the pain' is our collective prayer in the light of day and in the inkiness of night.  Finding a cure for IC is our religion and we bow to its lessons of pain, humility and strength each and every day. 
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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.)
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I'm Still Here 03/03/2011
 
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!
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If you're like me, and you have (or had) bladder pain and the constant need to urinate, have you ever stopped to wonder if there is an emotional component?  So many times over the years I experienced the many insults, abuse, sadness, and feelings of anger over my situation.  But instead of crying, shouting, seeing a therapist, or journaling out these emotions, I tucked them deep inside of me.  I think my bladder finally decided that enough was enough and instead of holding it all in and allowing more of these damaging emotions to build up, it spoke up and said "Listen to this pain.  Deal with it right now!  Let it go and let if flow."  It took me five years to deal with all of the built-up emotions of my life.  My bladder is no longer angry and I work very hard to go with the flow of life.  So give it a try to see how releasing built up toxic emotions are playing a role in your IC pain and symptoms.
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Here are a list of little things that you can use or do while on the IC diet or learning to live with IC to brighten your day:

  • add freshly sliced cucumber slices, limes, or lemons to your drinking water
  • infuse your sleeping space with an essential oil (lavender seems to be a scent that a lot of people with IC can tolerate)
  • Replace scented candles with unscented soy candles or with natural beeswax candles (which smell great even as they burn out)
  • Splurge on the highest thread count of Egyptian cotton bed linens so when you do get to take a nap in between restroom stops, it is a luxurious one
  • Replace your cleaning supplies with natural brands such as Seventh Generation-you'd be surprised at how chemicals in cleaners negatively affect your IC
  • Find a counselor, therapist, priest, etc. who you can talk to in confidence at least once a month so you have a neutral person that you can share all of your IC feelings with
  • Read encouraging books but be aware that it is normal to be depressed, angry, or sad to suddenly have a chronic and painful illness
  • Cry when you need to-don't keep your emotions inside!
  • Consider adopting a rescue pet from the pound.  My IC pain never seemed quite as bed when one of my beloved cats was lying next to me keeping me warm and purring
  • Try acupuncture, massage, or biofeedback for your IC symptoms
  • Join Facebook or other networking sites in order to meet other people with IC and learn about the latest treatment options
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I have been an angry person for a long time.  I try to hide this behind smiling and making others laugh.  But really I have some unresolved emotions from my childhood and an abusive relationship.  The main emotion is anger. 

So it shouldn't surprise me that I have a bladder disease after being pissed off all the time.  It is almost as if I subconsciously decided to hold all my anger in my bladder, until my bladder became weak and pain-ridden.  This also explains why prior to getting IC my IBS flared up.  My stomach was upset all the time...to match how upset I was at life. 

Anger can only stay in our bodies for so many years before looking for attention in the form of a disease or ailment of some form or another.  It isn't fun dealing with past issues and allowing all of those deep-seated emotions to bubble and burst forth.  Sometimes while working through the anger you just feel more and more angry because you're now remembering a lot of things that you have been regressing for a long time. 

But it is worth the work in the end, to clear yourself of anger.  Prayer, meditation, guided imagery are all useful tools to assist in this process.  Counseling is also another very useful tool.  My bladder still hurts on some days but the more I work on my emotions, the less it hurts with each passing day.
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IC emotions 05/14/2009
 

Depression.  There.  I said the "D" word.  I'll be the first to admit that I did not admit to myself that I was depressed when I was first diagnosed with IC.  I would only allow myself to feel the torrents of anger and sadness that my life and livelihood were being invaded by a health crisis.

 It would take many years for me to realize that the reason I got IC was because I have never been honest with myself and allowed true feelings to emerge.  I learned at a young age when events at home became chaotic that it was easier to put on a show to friends and family that I was a strong and happy child, unaffected by the events going on around me. 

I would take these traits with me to a marriage that neither of us had any reason being a part of.  After the divorce (the other "D" word), I carried around my anger from the emotional abuse of the relationship, and the sadness of my childhood, around with me like a great bade of pride at all of my resilience.  I overindulged in sweets and alchol and did not really care what went into my body because I have always, due to genetics, maintained a thin body.  Looking back I realize I was on a crash course for an immune system problem.  Like I mentioned in a previous post, my health seemed to deteriorate over the years, but I did not change a single thing in my life from my sugary diet, stressful work and college schedule, or deal with any of the anger built up inside.  The only time I "tuned" into my body was when I began to have stabbing pains in my vagina. 

Initially I was just more angry that I now had to slow down and figure out what was wrong with my longer invincible body, but eventually I became incredibly depressed when I realized I had a very long and difficult road ahead of me to reach any symblance of recovery.

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