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Living with I.C.
by Contributing Columnist Kimberly Barnes aka TeaTowelCreek
I was diagnosed with ” Interstitial Cystitis” ( IC) or otherwise known as Painful Bladder Syndrome ( PBS) in 2007. It is a chronic inflammatory condition of the bladder in which an estimated 9 million women in the United States suffer from. I honestly believe that the number of men and women who suffer from this disease is considerably higher.
Living with IC has changed my life in many ways; I can no longer tolerate acidic foods and drinks such as coffee, tea, tomato juice, pepperoni, pizza etc..All of my favorite things! If I consume any of these items I will be in a lot of pain. I have had chronic bladder infections, bladder pain, bleeding, the need to urinate up to 60 times per day, the feeling as if I have to urinate but do not and at times painful intercourse.
In the past I was teased relentlessly by family members, friends and co-workers because I was constantly having to urinate so much. That was very hurtful but I have come to realize that in order for me to move forward I need to educate myself and others, change my eating habits, meditate, learn how to distress my body and accept that this is a real disease and not something that is in my head.
There are times when I feel really good and times when I am in pain. The painful times are the hardest but I always try to stay strong and get through them the best way I can and know that eventually the pain will go away and better days are ahead.
Through my research I met a very inspiring woman named Gloria. She is a retired nurse who has suffered from this disease for 27 years. In 2008 she founded IC Anonymous. It is a wonderful place to go to meet other people with this disease where you can remain anonymous if you wish. She helps raise awareness and has volunteers who make blankets to raise funds for children who suffer from this disease.’
On her site she hosts a very informative IC Radio talk show that discusses many different topics relating to this disease. She has had many surgeries, has been on many types of medications, been to many doctors, she doesn’t believe that to-days medical treatments offer any relief but does not discourage others from seeking medical l treatment.
Gloria has learned to take better care of herself, meditate, do relaxation techniques, and change her eating habits to a more healthy lifestyle where she eats 80% fruits and 80% vegetables. She feels 100 times better now than previously since changing her lifestyle. She has accepted that this is now apart of her life, and has a great deal of compassion for others.
How can you help? Gloria would love for people to volunteer their time in making blankets to raise money for the children with IC. You can find more information about her and her fund on her website.
A note from Sue Rosen, publisher:
As coincidence would have it, just when Kim submitted her article, I too was just diagnosed with I.C. It is tough to live without the foods we love, but the saving grace is that the diet that is recommended does help considerably. I just gave up coffee this morning…YIKES! I am slowly removing the “bad” items from my diet, as not to go cold turkey on all restrictions. I don’t want to freak out on anyone…LOL! Thanks to all for reading! Both Kim and I will keep you posted in a future article to let you know what we have discovered, in terms of natural remedies to help the pain and the other symptoms associated with I.C.
Image courtesy of Creativity by Ann Rose
Tags: believe bracelet, bladder, chronic inflammatory condition, i.c., ic, ic anonymous, IC radio talk show, Interstitial Cystitis, painful intercourse, urinary track infections
December 9th, 2009 at 11:53 am
[...] Living with I.C. [...]
December 9th, 2009 at 2:17 pm
Kim I love the article! You did a great job with the description and describing your symptoms, well done! I especially love the mention of the family due to the fact that we all need to be education our spouse, partner, children, extended family and friends.
We also all need to understand that food is a culprit not just with cystitis but with all disease. The truth of the matter is we should all be eating a diet high in fruits and vegetables, preferably organic and we should all be weaning ourselves off of the real culprits which are meat, grains, dairy, processed and refined foods. These items all cause disease and inflammation.
On January 22, 2010 @ 1pm cst., http://www.blogtalkradio.com/interstitialcystitis – I have a two guest that will be on my show talking about how to eat, how to combine and how to be willing to make healthy changes.
Again thank you Kim, and Susan I hope you join us at IC Friends to help support and raise Awareness we would love to have you.
December 10th, 2009 at 9:07 am
Hugs to you both for control and feeling better ASAP!
December 11th, 2009 at 2:48 pm
Wow, I didn’t even know about this disease. Thank you so much for informing me and I will pray for yall that suffer from this everyday in hopes that they will find a cure or at least a remedy for dealling with this agony.
God Bless,
Linda
December 11th, 2009 at 5:37 pm
Kim this is a wonderful article. I know several ladies with IC and it is no walk in the park. I have a rare blood cancer and hepatitis c, like you to others I may appear to be just fine but in actuality I suffer at times a great deal, these silent diseases as they are called are so much harder to deal with in some ways because others do not understand how very sick we are at times. It can be very frustrating. You have to have a good attitude like yours and develop a good support network of people who do care and understand. It is important for us to realize we are not alone and that with adjustment our lives can indeed not only go on but be fruitful and satisfying. Thank you for sharing.
January 14th, 2010 at 8:28 am
Thank you all for posting! My heart goes out to all who suffer from any disease, esp the silent ones. Having support from others is so important. I have found that it is best to listen to your own body and not let any books about a disease dictate what is best for you. I have done alot of research about IC and found that allergies play a huge part in the disease. I have had allergies all my life and recently figured out that cleaning chemicals effect me horribly. I have been cleaning off and on for people for many many years and have used harsh chemicals in the past and who knew that would be 1 huge culprit for me?! A few months ago I was cleaning for a guy every 2 months and every 2 months I would end up in so much pain. I had been using clorax2 to clean with as that was all that would clean it so I gave that one up after I figured out the connection. I had also been using that stuff in my own house for yrs so that stopped as well. I am now experimenting with natural things to clean with. I also had some tests done on my bladder and kidneys and all came back normal. Thank GOD the hospital had a financial aide program as it was over $1,000 for the tests and my cost was covered by the program.! I honestly would love to see a new urologist as I feel the one I have now honestly does not specialize in IC and everything he gave me to help me , hurt me. Such as vesicare and Ibuprophin.OMG I was in 5 days of hellish pain after taking those. I have learned that with me when I avoid the bad foods i do not have an overactive bladder and feel no pain. Its all trial and error and I am now slowly cooking everything from scratch and see how it goes. I also wanted to add that I tried this over the counter stuff that have been advertised on IC websites, the name of the stuff eludes me at this time but it starts with a P. OMG that stuff also caused me great pain. Once I remember the name of it I will post it here. It is sold at Walgreens in the antacid section for $10.00. It is supposed to absord any acid from foods. Some people may have luck with it but I did not. Again thank you for posting! Love and prayers to all!
January 25th, 2010 at 5:09 pm
Prelief is what I used. it did not help me but it may help others.