IC Sisters- Sue

I'm starting a new direction with my blog. I either complain on here or come do a post when I am flaring... and I wanted to try something different. I'm doing interviews with fellow IC patients & posting them on here. Sue was brave enough to be the first! (If you are interested in being interviewed, email me- naomi@naomikarth.com for details!)

 I wanted to say a couple things about Sue before I started her interview. Sue is one of the very first people I met with IC, and we met via FB. (There is a huge community of IC patients on FB. You usually only need to meet one, and suddenly you'll know tons!) Sue is a big part of my inspiration to spread awareness, and as you read her story you'll realize why- she deserves a cure, she deserves to get her life back! We all do! And it is just plain frustrating to hear about patients being treated they way she has by doctors- people who are supposed to care about us and our health!!



Name: Sue Criswell

How long have you had IC: I've had IC since July of 2009.

When were you diagnosed: Diagnosed officially December 2009, pretty quick huh??

How long did it take: I had a really good doctor and and a niece with IC, so I kinda had an idea I might have it but praying not.

Do you have any connecting illnesses (conditions associated with IC): I had gluten allergies start pretty much the same month the IC hit?? Not sure if they are related.  Also, deep depression and anxiety go along with it.

At the beginning, what did you think was the hardest part of living with chronic pain: Chronic pain and IC??  I have no friends and had to quit my job.  Very lonely all day by myself and very often never talk with anyone.

Has your response changed at all with time: No change at all.

What is your current treatment regime: No treatments work with me.  The pills and medicines only hurt or cause horrible headaches.  I have to have a very strict diet, little stress (ha ha with three kids!!) and try to get on top of pain asap!!  Only take 1/4 lortab as needed.  Currently going thru early menopause and hormones are out of control and causing cysts and horrible pain.  No one told me this would happen.  Praying that IC will get better after menopause is over.

What is the one thing you wish people would GET about living with IC: I just wish people would stop making fun of my diet and treat me as a human with chronic pain and not a "special needs" person.  I don't get invited out because I don't like to have fun any more??  Great.

If you were cured overnight- how would your life change: If I could be cured, I would go back to teaching, my first love!!  I miss it so much.

How does/did IC affect your work life: I have no work life, can't really work with 3 year olds and go to the bathroom 5 or 6 times in a day or be in pain and try to be happy and teach.  Just doesn't work.

IC often affects a patient's sexual life, how have you overcome those issues: Our intimacy luckily has not been effected, maybe because of my hysto??  Not really sure.  I had a great ob/gyn who walked me thru the first few months after surgery and diagnosis and things went really well.  Not a problem since.

IC awareness is sadly lacking. Any ways you have helped make an impact locally or even just on a personal level: My community is very made up of retired couples but soon to get a new hospital.  Everyone I speak to about IC is not really up to talking about "girly" issues.  The medical people I talk to don't know where to send me to or how they can help me.  I really am to the point of just not even talking to anyone about my problems any more!!!

Any other thoughts or comments- feel free to ramble a bit here: After 3 years of having IC ... It is so hard to find any help in my area.  Not one doctor cares!!  I have no treatment options and I have been treated so poorly by so many nurses.  One doctor threw a clipboard at me and told me if I didn't do a instill he would no longer give me pain meds!  This was 3 days after a hydro-dystention.  I told him I would flare because of my reactions but I did it anyway because I needed pain meds and I really hurt from the procedure.  I cried all the way home because it hurt so bad.  That SOB did not call me back for 3 days with a script and I planned on killing myself if I had to do this every year.  I had no options??  Not sure what to do??  The pain finally stopped and I left that office and finally got to a counselor and a pain management clinic.  That beast is still practicing!!  Never again will I do an instill or a hydro.  My head is finally on straight and I just cringe every time I hear someone is going to have one done.  It's hell on earth having IC and I pray that they find a cure, it's worse than cancer and I wish that everyone could see our pain.