my life with ic

[pooh]

hello, wow iam so very grateful that i found all of you. i have felt so alone since i was diagnosed with ic. i felt like no one understood what i go through, then i found all of you. as i read your stories i cried, because it was like i was reading a story o wrote about myself. i was diagnosed with ic 6yrs ago. i spent 3 months walking around in terrible pain, i couldnt even stand up straight & all my urologist could say is i was drug seeking. he finally went in a checked to see if i had ic & i did. he apologized for the way he treated me , but was not sympothetic to the pain i was in. so i went on a search to find a specialist to help me. needless to say i went through 4 doctors before i found my current urologist. he has been wonderful. he to has had his moments of being hesitant in giving pain meds, but he has come to realize, that ic is very painful. but i have found that er doctors need to be educated in ic & the pain that goes with it. i currently take elmoron, nuerontin, elavil, zoloft, pyridium plus, urised, levisin, i have done dmso instilations, i do heprin & lidocaine instillations at home, plus i have weekly instilations at the dr office ( im not sure what it is ) i have had 6 bladder distentions in the last year. i have had to deal with deppression & despair in the last year. there are days that iam in such pain that i feel i cant live another day like this, my suicidal thoughts have been high. i have tried to get into 3 pain clinics, but have been denied , because they dont handle people with ic, but after many disapointments i have finally found a clinic who will see me. so iam looking very forward to going there. my urologist is sending me to a specialist in salt lake who specializes in ic. so after many years ( well to me ) of suffering iam hoping there is a light at the end of the tunnel. i know there is no cure but hopefully there is some relief. i understand all of your pain, frustration, anger, dispair, & discouragement. i know i didnt ask for this disease & i have asked GOD many times to take it back, but of course i know that cant happen, because he didnt give it to me. my family suffers just as much as i do, but theirs is emotionally. i get very angry, because i dont want my childrens childhood memories to be that of mom always being sick. i have such wonderful children, on my bad days they help pick up the house, do dinner & my oldest son makes sure the younger ones take their baths & get ready for bed. i try to make up for it on my good days by spending good quality time with them. but here latley the bad days are more than the good days. so i have to try & put my suffering aside & try to spend quality time with them. needless to say we have watched alot of movies. it is difficult to love like this. but fortunatley i do have a wonderful husband & children. so iam hoping between the pain clinic & the specialist i will find some relief, so i can live atleast a somewhat more productive life. i had to quite my jod last october due to my health. i then applied for SSI luckily i was approved on the first try. i sympithize with all of you. i would love to hear from any one who would like to talk. my email is [email protected]. maybe some day we will all find some relief & maybe even a cure.

[Teri]

{{{{{pooh}}}}}
You are NOT alone anymore. Welcome to the wonderful family here at the ICN. Most of us know EXACTLY what you are going thru. I went thru 6 horrific years of non-stop pain and was lucky enough to get into a pain clinic. I was only on their meds for a few months and out of desperation I tried yet another hydrodilation and in Nov the 24/7 pain finally let up. I have lost my job and most of my sanity to IC and am also collecting SS disability. I figure they don't pay me near enough money for how crappy I feel.
You have to stop beating yourself up about your kids. You need to learn (I know how hard it is)to treat yourself as you would treat your best friend. Kids are alot tougher than we give them credit for. Most of us here wish that we could have been a different kind of mother, but our kids end up growing up and asking 'what was all the fuss about'. We do the very best that we can and we can't expect more of ourselves.
I know how hard it is to want, to beg your body to do more, ESPECIALLY when the depression sets it, but somehow we have to find it within ourselves to be kind to ourselves.
I can feel your pain as I read your post and wish there were something I could do to make some of it better for you. But, there is just no way to come thru the computer and give you a great big giant hug.
Please make yourself comfortable here at the ICN. You can share your tears, your laughter and anything else you need to share, there is always someone here to listen.
tons and tons of hugs teri

[ICNDonna]

I'd like to add my welcome to the IC Network family. You'll definitely find a lot of understanding here. We've all been through it. I think my worst time was the time before I was diagnosed.

By the way, I love your computer name --- We're Pooh fans at our house, too.

Warm hugs,
Donna

[pooh]

dear donna,
thank you for the warm welcome. iam so very grateful for this site. my lonliness that i feel with this disease isnt so bad. agian thank you for your kindness.
monica

[Rita]

Dear POOH, I'm also new to this message board. How I wish I had found it sooner.
There are so many times when you feel totaly
alone. My Husband is wonderful and tries
to be very understanding. However nobody
really gets it unless they have IC .
The difference it makes just to read that
someone is in the same boat makes such a
difference. GOD BLESS THIS SUPPORT BOARD!!
My prayers are with you. (((HUGS))) Rita

[pooh]

DEAR TERI,
THANK YOU FOR YOUR KIND WORDS. I TO WISH I HAD FOUND THIS SITE SOONER. I HAVE SPENT THE LAST 6 YRS FEELING LIKE NO ONE UNDERSTOOD, EVEN MY UROS. SO FINDING ALL OF YOU WAS LIKE A GOD SEND. I LOOK FORWARD EVERY DAY COMING HERE. ITS LIKE MY SERENITY TIME. THANK YOU FOR YOUR SUPPORT. HUGS BACK TO YOU.
MONICA