new hope

[free2bme]

i'm new to all this and to the internet so forgive my mistakes. i am overwhelmed by all the newly diagnosed icer's. i thought i was all alone until i started to research this disease. i have been visiting this website and reading some of the messages for about 2 months now. only now have i had the courage to join in. this place is a miracle. God knew just what i needed and He led me here to all of you. it feels safe here. i can share the pain, the emotions, the questions and know that each of you has been where i'm at. it's true that you never truly know how a person feels until you've walked in their shoes. i was traveling down a road i thought was being pioneered by myself but now i see it is a well traveled road with many friends to help along the way.

my story - for many years i suffered what i thought were recurring bladder infections (like many of you). being on one antibiotic after another especially when there was no infection just didn't seem right to me. i thought antibiotics were only to be used for infection. i quit taking them. after going to my ob-gyn i learned that ic could be the issue. he gave me a list of "no-no" foods. but what works better for me is a list of "what can i eat" foods. and there began my journey to better understand what was going on in my body, what could i do to get better, what exactly is ic, etc. then i found the network. one of the biggest helps i have found here, besides being validated that i'm not alone and the pain is real - is the pain measurement guide. i can now relate in specific terms to my doctor and more importantly to my family on a daily basis sometimes an hourly basis where i'm at regarding my pain. the pain has causes changes to my lifestyle, bringing isolation, which brings depression. but slowly with God's help, my family and my doctor, i finally feel hope.

[kelly McC]

Hi and welcome
you have a wonderful positive attitude and that will help you through this. Your story sounds just like mine . My gyn was first to say it could be IC... I am so thankful to her .The pain guide was what helped me relate to my doctor how much pain I was in.
It was a huge part of my treatment plan.. You are not alone and we are here for you glad you posted and shared your story faith and hope!!!
huggs,
Kelly

[free2bme]

thanks for answering back.

just 2 more thoughts... i feel too young to have this disease which causes me to wet my pants frequently! i thought this was something only my grandma did! and... because of the constant leaking and sometimes loss of control to "hold it" i wear pads continuously. my husband says we should buy stock in the industry as we keep them in business! but in all honesty, i feel this contributes to the problem. it makes me feel added irritation to the area most of the time. does anyone else ever deal with this? any other solutions or am i the only one who does the pad thing?

[michie]

my husband says I have acid pee. I sometime sit in the bath room and just scream :cussing: :headbang: not that it helps with the pain or the embarassment of having this problem but it sure feels good when the stress of it all gets to me which happens more and more lately and if it helps yes I wear pads all the time well panty liners any way I found it more embarassing to have wet spots.good luck


michie

[VickiB]

I have that problem & must wear pads only when I'm in a flare. It seems I lose almost entirely my ability to control my bladder at those times. Fortunately my flares are now few & far between.

free2bme, You have a wonderful, proactive attitude! You'd mentioned changing your diet,...have you found it to be helping with your symptoms yet?

Glad you decided to join us! Keep the faith, -you'll get there!

Vicki

[SharonA]

:welcome: free2bme...I am so glad you decided to join this gang of wonderful, caring and helpful people. I thought I was alone on this journey, also. That is until my very supportive husband found this website. It was truly a God-send. Most everything I now know about IC, I learned here from the IC Patient Handbook and reading the posts of these fellow travelers.

Yep...I am also a user of pani-liners whenever I go anywhere...just in case. It gives me a sense of security knowing I am protected from those embarrassing, telltale wet spots.

I love your attitude... :kissing:

[free2bme]

Thanks for writing SharonA and VickiB. About the diet... when my doctor said to give up caffeine and chocolate, I said just go ahead and shoot me! What is a day in life without Dr. Pepper and a Snicker bar?!? In my searchings I read that one lady was a self proclaimed "Godiva-vacuum", I thought she hasn't seen me in action! Yet when the pain became debilitating the first step was to look at my diet and you guessed it... these are death traps for me. So in the process of learning what my body will and will not tolerate, I am convinced that diet will play a large part for me. I'M STILL IN MOURNING FOR MY TREATS THOUGH! Actually, I'm learning that it is not so much the treat I miss - it was how the treat made me feel. Happy, comforted, peaceful, etc. Now I must find new things. This morning, when normally I would have what I call a "special moment" (flavored coffee) or a hot chocolate, I just sat holding my favorite mug filled with hot water and a dab of honey. Funny... I enjoyed it.

I have found that 2 triggers for me are something which I can do nothing about: my period and stress. But knowing when my period is approaching helps because I can gear myself up mentally and that seems to help. Also, I can't stop the stress in my life (recently, alot: my husbands brother committed suicide. His mom did also a few years back. (Incidentally, my mother-in-law suffered with ic.) And his dad is recently diagnosed with dementia.) BUT I CAN control how I respond to it.

And God bless my loving husband. You can imagine because of his past family history how devastated we felt when I got the diagnosis. But I guess I feel like I'm on a mission to prove to him that I won't be like his mom. That there is hope and help. I just have to search and ask. And not be afraid to share. This morning, I emailed him and asked him to go online and order the survival book. Within 1 minute I had an email back that simply said - DONE. I cried because something simple meant so much.

Just like this website. It is life and hope for those of us new to the disease. And to know that there are so many of us is empowering. WE ARE NOT ALONE! And that is half the battle.

Blessings to you all