Pleas Read

[JOJO]

Hello eveyone
I havent been on the boards as much as usual. I was dx in 2000. Went thru all the Drs, finally found someone that did the hydro, took all the meds nothing miraculous really work for me personally. It has been a hard last few yrs. Went to a shrink for a while, then last yr had major inner ear issues left my job etc etc... Its been hard. The last year I have been back to work and also took a bus aide job for the school system. I have learned thru all this that it is hard for anyone to be dx with a chronic disease. There are times my flares would bring me to tears, and now I have fibro. But something makes me keep going on.I dont let the disease control me, I work with it. In the beginning I wouldnt travel cuz I had IC. No More, I just bring my travel johns,and pillows whatever I got to do. I am going to be 40 this July and I want the most out of life. I dont have children, Ientered the foster care program. I just sighned up for a ayoga class. I cant let this disease define who I am anymore, there is much more to me than all my diseases. I know we all suffer differently and if anyone out there in pain, I know the stabbing feelingall to well. My issues are more frequency. Do I still get sad yes, but a antidepressant has helped me tremendously with the depression. I will always believe this disease lies much further than ones bladder. I will always believe its systematic, just my belief. And for all you new ICers it is important to trust your own instincts, get advice from us oldie ICers, keep up on research, BUT try not to make it your life. These boards have helped me tremendoulsy thru the yrs, but at one point I was obsessed focused on IC IC. I cant do it anymore. I need a life.I still have alot to work on, physically at times I am not my best, but it will never get my heart and soul. I wish you all the best life has to offer and pray that one day they will unsolve the mystery of all these diseases that plagues so many but no cure. God Bless You all and:love: JOJO

[Iris]

Hi Jojo just read your post, and admire your attitude, you are not going to let IC beat you down. I know it is very easy to do, and when I was first diagnosed, I felt exactly the same, IC was definitely winning the battle as far as my life was concerned. Then I changed my attitude and was determined to get on with my life and not give in. I must admit I feel better now I am in control of my life with the right meds and great health care, and a great support group, life is looking good again. Thanks for your post and a hug to go with it, Iris.:thumbsup: :hi: :flower:

[SheriG]

JOjo...You are an incredibly brave woman with a great attitude, and I do so admire you. I try to live my life and block out the IC, but some days it just ins't possible.:( ...I wish you all the best, and best of luck in the foster care program. I have 3 adopted kids, so it is a program close to my heart! Take care my friend!:kiss: Sherig

[sleepyangel30]

Thats good that you don't let IC get the best of you anymore. same here with me. I may seem weird. Sometimes I laugh at my ic. I just find something to laugh about and I keep on praising god thats what keeps me going. :) I have a feeling there will be a cure or at least a treatment that works for everyone.

[JOJO]

Trust me it hasnrt been easy, and there are days I still want to scream(Flare Days),So many suffer from this and some such in horrific pain, I know we all try are best to deal with it. Its not about being brave, not to me, its just I want to live a somewhat normal life,thats all. I thank you all for reading it,and your kind words-JOJO

[sleepyangel30]

yep. i wish i could live a normal life as well, but im like you i don't let ic get the best of me. i say to myself every day there is hope out there somewhere.

[IWin]

JoJo,

I feel much like you. A few years ago I was letting my bladder control my life. But no more. I do what I want to do and don't stay away from doing things because of bathroom visits. I never went anywhere where I wasn't sure of the bathroom situation. Now I just deal....if I have to "go" in the bushes I do. I used to never ride in the car with a friend because I was too embarrassed about having to stop.......now I just tell them up front we need to allow extra time because I may need to stop. I'm no longer afraid to ask to use the bathroom at stores.....if they say no, I refuse to shop there again.

I don't have the IC pain that some have, but I am no stranger to pain. I do what I can, but more importantly, I do what I want. Somehow, pain levels go down when I'm doing what I want.

When I'm down, I look for the humor in all this. I remember what I can do. I think about the foods I can eat. Thinking about all the "can'ts" only makes things worse.

IC may control my bladder, but I control my life. Thus my name "I Win" is because I am winning this battle by taking back control of my life.

[JOJO]

Good for you Iwin, by the way I like the name. It might control our bladder but not us, and yes I a to am one of the more fortunate when it comes to pain-Good Luck-JOJO