JNJ-421604443 is the name.

OK hello. as you know if you read this blog I have IC also known as Interstitial Cystitis...
in boring language it means inflammation of the bladder. cause unknown, no cure. just pain. my bladder also tears and leaks inside my body, although urine is sterile it really hurts when it happens. on a scale of one to ten its about I would guess a 12.
it is as comparable t birth, and I know that pain, times two.
to get the IC Diagnosis I was told IBS, Endometriois, Fibroid's and gall stones, Kidney infections and even Kidney stones.
I had a few surgeries to find out " nope that's not it"
after a few surgeries and a lot of doctors my family doctor pretty much gave up and said
"Pseudo-Pain"  and I was referred to a shrink.
after over a year of treatment for "depression" the pain attacked me this time I went to my doctor..
this time they found a large amount of blood in my urine.
so I got anti-biotics that didn't work, then a stronger dosage, nope that didn't work, finally the strongest pills didn't work.. my doc still found blood in my urine..
" Time to see a urologist"
Oh great I thought, another specialist gonna tell me I am a nut job!

he looked at my chart and hmm'd and haa'd and said " I want to look in your bladder. I think you may have Interstitial Cystitis I agreed and doubted very much they would find anything.
after the surgery the Doc came back
" well I found tearing and I found pin point bleeding and small hemorrhaging. you have IC "
" what? no no- usually doctors refer me to my shrink." I smiled weakly...
" Shelly listen to me, you are NOT crazy you have Interstitial Cystitis"
after a 7 year journey I had a answer.

he gave me a few pills to help, they didn't work. He told me to take benadryl a night if it hurts.. and YES this helps a bit. I have a standing order for pain pills I rarely fill, because I have to chose between pain free or being a Mom. I usually choose being a mom.

IC has changed me, but not because of the Diagnosis but before. I cant run, I cant bend, I have less energy, and I get very depressed. I feel like a failure...
( specially when I have to take a pill to get on with my day)

4 months after surgery I went for my follow up .. ( I go once or twice a year) this time he said
" There is a Study. You are a perfect candidate"
I am fairly healthy, I don't eat horrible foods all the time, I am OK shape, my heart is good and I am able to continue working ( Unlike many of my IC sister's )
Although my bladder is in bad shape, I am in good shape.
I follow my diet most days and avoid foods that trigger me, pineapples, and chocolate and coffee I am down to one a day..
( anyone who knows me knows that is low for me)

So today was Day One of the study, I didn't get the drug today, just the question period, to make sure I didn't have dementia.
To check my heart
do some blood work
and two urine samples.
I was given a "diary" to keep track of the trial  how I am reacting to the drug I may be getting its a 50/50 double Blind Study.
so not even my doc knows if I am gonna get the dud or the medicine which by the way is a neuro-blocker which is from the hormones of a Chinese Hamster's Ovaries
the drug is called JNJ-421604443

anyhow, the reason I agreed to this trial is NOT just because of me, but because of my IC Sister's.
It is also October which is IC awareness month, yes we share this month with Breast Cancer Awareness and research. and I am not trying to trivialize that cause however, NO one seems to know how painful IC is and how many people it affects.

so although research is being done, as I am a part of, it is still in it's infancy and we need support and awareness too.. feel free to share my blog to all of your friends to get our message out.

Thank you