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

For six consecutive holidays (of course I am referring to Thanksgiving and Christmas) the days came and went like so many drips in a faucet: blue, gloomy and the same as every other day.  So much of a holiday is centered by food, alcohol and sitting around laughing and being merry with your friends and family members.  I remember thinking to myself without food and merriment there is no holiday. 

The severe and debilitating pain of IC and vulvodynia drove me half-mad and I think I walked around the aisles of Christmas decorations as if I were in a carnival of horrors.  Looming out of the aisles the cans, packages and boxes of all that glittered but could not be eaten without horrific pain.  Gleeful shoppers seemed stunned by my lack of jolliness and my cart filled with broccoli, brown rice and organic chicken while their carts were overflowing with all of the food that an IC patient could only dream about (cue "Food, Glorious Food" from Oliver Twist).  Yes us IC patients all shared a commonality with a little orphan boy but instead of being kept from the food due to our income our bladders are our jailers. 

Speaking of locked up, you might as well lock up every bottle of alcohol and flush the key down the toilet.  I often look back in sadness at how my palette was beginning to develop for choosing the perfect varietal of red wine to pair with my dinner.  I decided that I would tour the varietals and regions around the world.  Chile is where I was when IC overtook my body.  Oh for a glass of Chilean cabernet to celebrate the Christmas season!  For even in remission I cannot drink a sip of red wine (or any other alcohol) without immediately starting to have bladder pain.  I raise a silent glass to myself before I got IC and I raise the glass to all of my IC brothers and sisters who will celebrate the coming holidays in pain.  I hope that you are able to celebrate in a way that is as low stress and as meaningful as you can make it.  I also wish that you are surrounded by friends and family members who support you that greatly outweighs the candles on your menorah or the gifts under your Christmas tree.

During this month in the States we set aside a four-day weekend (more dedicated days off, I might add than is given to any other of our natioal holidays) in order to celebrate the act of thankfulness with family and friends by preparing and then consuming an uncountable number of food dishes.  Personally I always hated the Thanksgiving holiday the most when my IC was at its worst because it seemed like a holiday set up to mock all of the things that I could no longer enjoy: food and time spent with family and friends.  I have since learned that is easier to cook the food in the manner in which I will not have an IC flare up and have friends and family come to my house and the stress of the holiday has lessened substantially. 

The issue of food and the pain and fear that we as IC patients face aside, I must address once again and give thanks for everyone who reads this blog and sends me private messages throughout the year.  I am so grateful for each of you and I thank you for your courage and inspiration as IC patients.  There are so many great things happening in the world of science and medicine right now to help people suffering from painful conditions such as IC that I also want to thank the tireless doctors, researchers and health care communities who continue their efforts for finding a cure for IC. 

I would also like the opportunity to thank my extended family, circle of friends and always and forever to the love of my life, N., for your continued support and love and encouragement over the many years.  Together we can all do great things!  In this season of 'thanks-giving' I feel overwhelmed with gratitude for each of you that has come across my path. 

Valentine's Day, as with a lot of holidays, can be wrought with feelings of guilt and depression for someone living with IC and vulvodynia or testicular pain.  At times it feels like the red cellophane wrapped heart-shaped boxes of chocolates that we cannot eat, and the commercials playing scenes of couples in love without a care in the world about to get it on once the camera stops rolling, all seem to mock you when you cannot partake of a strawberry cream filled bonbon or enjoy the pleasures of sex.  And for those who have chosen to be single or who have partners leave them because they cannot understand or cope with a partner living with the devastation of IC, unable to be social, healthy or sexually active, Valentine's Day seems like a day to be endured instead of enjoyed.  As with my post for how to enjoy the holiday season while living with IC, I hope to offer some thoughts surrounding how to not only endure Valentine's Day, but to enjoy it.  Here are some thoughts:

• Pre-bake a treat that is IC friendly for you, let them cool then set them on a beautiful plate, wrap in cellophane and a pink sateen bow to treat yourself.
  
• Consider trying an IC friendly couples massage (the gentler the massage the better for ICers) such as a hot stone massage or hot oil massage.
• Call ahead to a restaurant in town where you know they have chefs who are willing to create meals based on your special IC dietary needs.  Make an RSVP and have a dinner out enjoyed by candlelight.  Drinking sparklng water out of a wine glass in a nice restaurant while dressed up can do a lot for one's soul.
• Ask your significant other to donate money to IC research instead of spending the money on roses which will fade away in a matter of days. 
  
• Make homemade, old fashioned Valentine's Day cards from construction paper, glitter, etc. and take them to a local nursing home along with some cookies or brownies.  It always amazes me how working on a project to give to others makes my IC symptoms fade away, if only for a few hours. 
  
• Adopt a pet from a shelter and show how much you love saving a life. My cats have helped me when my IC pain was at its worst by snuggling, purring and providing me with their unconditional love and support.
  
• If tolerated, take a warm bath with Epsom salts and dried lavendar. Listen to beautiful music. Relax.  Take time for yourself. 
  
• Listen to meditation or spiritual CDs and love every part of your body including the parts that are sick and hurting. 
• Love yourself.
  

 

"Man is made by his belief. As he believes, so he is."
Johann Wolfgang von Goethe

The spirit of a season filled with numerous religious holidays either renews or calls in to questions one's beliefs.  By definition, the word belief does not always have to encompass a religious thought or pretext, but in our modern society it does seem that most belief systems encompass religion to some capacity.  It is with this understanding, along with the knowledge that many people remind us during this holiday season to remember to stop and reflect upon the true meaning of the season, that upon reflection I thought it was  a great season to reflect on what I believe when it comes to the beliefs that I hold regarding my body (mind, body and spirit). 

In previous blog posts I have discussed an epiphany that I had that an onset of a chronic pain disease can have similar stages as outlined in the commonly studied "7 Stages of Grief" as presented by modern day psychologists.  Along this same vein I would state that we can hold different belief patterns within our minds and therefore throughout our entire bodies regarding how ill or conversely, and much more positively, how healthy our bodies are (or are going to be through various courses of action).  It has taken me years of reading and studying religious and spiritual belief systems from Christianity to Zen Buddhism to realize that most teach (and believe) that our bodies are amazing and sometimes unexplainable organisms capable of oftentimes spontaneous 'healing'.  Because of the aforementioned myriad of belief systems I still feel obligated to put the word healing in quotes because some people believe that the very act of 'healing' or 'being healed' comes from within or from God (or god(s)) and so therefore there remains a completely different perspective on where the healing comes from as well as who or what should get kudos. 

In my opinion, no matter where the healing comes from, our attitude should be one of thankfulness and gratitude as well as provide us with the opportunity for reflecting upon the lessons that the pain was trying to teach us.  If we are still in pain then perhaps we should work on our belief system at whatever level we are most comfortable with.  Perhaps deep down at a very cellular level we do not completely believe that we can or will get better, even though we regularly attend church or synagogue.  From a biological perspective, studies have proven that the human body is continually in a stage of renewal (healing) which we witness every day if we are only to pay attention (applying lotion to our dry, flaky skin and cleaning out our hair brush, etc.)  So imagine what could happen to our belief system(s) if we combined it with what has scientifically been proven?  Emotional healing can occur through psychotherapy and/or counseling, but as we have heard we have to want to overcome our pasts and believe that the psychologist is going to help us.  We have to make the choice to eat more healthy, to walk instead of watching TV, and to read books or articles that support or perhaps even challenge our beliefs on the healing capabilities of the human body. 

I do know that when my IC was at pain and urinary frequency levels that were off the charts it was hard to believe that I could get well.  An 'ah ha' moment occurred when I began to chart feelings of higher pain and depression when I surrounded myself with on-line IC patients nay-saying every doctor and treatment protocol available.  I decided to make the choice to believe that I could get better.  The first step was by isolating myself from the naysayers and I began to read all manner of spiritual and religious tracts to support my journey towards health.  I learned Sanskrit as part of my yoga practice.  I listened to meditation CDs prior to going to bed.  I made the hard choices to never cheat on the difficult IC diet so I could chart (and praise) my progress.  So many little choices I had to make along the way towards my health happened but only after I made the choice to believe that I was going to get well.  In this season of gift giving and reflection I challenge you to reflect upon your beliefs and to perhaps make new year's resolutions that will support your beliefs as well as  your health within the new year.  I believe in good health.  Do you?

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