Sunday, April 25, 2010

Welcome

Hey everyone. We want to thank you for taking the time to read our blog. We started this blog because IC is very important to us as I suffer from this terrible incurable condition and my husband is right there by my side going through all of this with me. We hope to expand awareness for this painful condition, and help people get a better understanding of what it is to live with IC.

Interstitial Cystitis is a very painful condition of the bladder. IC causes the bladder to be severely inflamed hence it's name. When the bladder fills up with urine it causes to crack the bladder walls causing it to bleed and make it more irritated and inflamed. IC also causes burning sensation, pelvic pain, pressure, urinary frequency and/or urgency, vulvadynia, migraines, irritable bowel syndrome, systemic lupus erythematous, allergies, endometriosis, and even fibromyalgia. Can you believe one organ can cause so many problems?

More than 4 million people in the US alone suffer from IC and another estimated 1 out of 77 may have IC. Women are 10 times more likely to have IC than men. They do not know why. Even though so many people suffer from this incurable condition hardly anyone knows about it and I'm not just talking about you and I, I'm also talking about the medical field. There are two great websites on IC you should visit. The first is IC Help and the second is the IC Network. We really encourage you to check both of those out and better familiarize yourself with IC.

Both Rich and I will be posting on here about what we struggle with and how we deal with IC in our family. <3

5 comments:

jmosizzle said...

thanks so much for doing this. I will be reading and praying.


love,
jenny murphy

ali said...

Hi, I'm writing from the ICA and we are compiling a list of blogs that IC patients are writing and I would love to include this blog on the list if you are ok with that. You can check out the list here. http://www.ichelp.org/Page.aspx?pid=754 email me at ashaffer@ichelp.org and let me know.

Thanks,
Alison

WOLFIE said...

this is wonderful. i will be following your blog and have invited others as well. just tell it like it is.
those of us that are afflicted with this disease have a lot to say to the world.
So.... do it!
Behind you 100%

b said...

Hello! I can totally relate. When it's really bad I am going to the bathroom every 10 minutes, and the feeling in my bladder is total misery. As you know the worst part is not being able to get any sleep. Having said that I was in a very bad flare, running to the bathroom every 10 minutes, I hadn't slept in weeks. I was feeling totally hopeless. I received a sample bottle of cysta q from my URO and it is helping a lot. I am also taking the cysto-protek. I have days where I can go two hours without going to the bathroom and some nights I'm getting decent sleep. I'm also taking a naturopathic bladder remedy that I got from my naturopath. It is herbs that help heal the bladder and aid in inflammation. I know it works because I took it all last year and had weeks at a time where I was symptom free. it took about 7 months before that happened. When I was diagnosed I couldn't even sit down, much less sleep from the pressure, urgency and frequency. Basically, I got better and stopped taking the natural meds and the western meds and I ended up back at square one. I feel like i finally understand what IC is for me, and how the natural medicines and western medicines, how they work and what they are doing to help me get better. I have to be strict with my diet too, one wrong thing, ( and I know what they are)
and I feel much worse. You have very similar symptoms to me, so I FEEL
like you CAN get better. what are you taking? let me know if I can be of any help with info on these medicines I am using. Hang in there!! B

stringsofme said...

Hi B, I'd love to talk to you more through email. If you want to leave me your email address I can write you back or if you feel more comfortable my email address is stringsofme@yahoo.com Thanks take care! <3

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