desperate for help

[kittykitty]

Hi all -
Does anyone know of a 24 hr support group or talk line that would be able to assist with pretty bad depression?
I haven't been diagnosed w/IC yet, but it is suspected. I am in pain all the time and it has taken its toll on my job, my friendships, my marriage. I wonder how long it will be before friends and family bail on me completely ---
I am limited in the drugs I can take because I could possibly be pregnant (will know answer on that one in about a week)

I hardly recognize myself anymore and am starting to think pretty drastic thoughts --- if anyone knows of a helpline or such that deals with IC or pelvic pain it would be much appreciated. I am getting to the end of my rope and am afraid.

[vm]

I don't know of a help line, but I do know that you can call the ICN:

Interstitial Cystitis Network
PO Box 2159, Healdsburg, CALIFORNIA USA 95409

Sales: (707)433-0413
Administration: 707.538.9442
Fax: 707.538.9444

Please do reach out for help to someone and don't assume all your friends will bail. I know that many people are very let down by friends after their diagnosis and the subsequent hard times - but many of us have very good friends who have stuck by our sides. Those "real" friends are often few and far between and crises like this help us find out who they really are - but for most of us there is at least one person out there who truly and deeply cares if we will open up to them.

Where are you in the diagnosis process? What has been done and what is on the back burner to be tried? Honestly, often the time before diagnosis is the hardest and the scariest. It can feel very isolating and very dark and scary b/c the future of our health is so uncertain.

Please remember that MOST of us do get to a place where we feel better. The majority of people who are drawn to health related message boards are drawn b/c they are hurting and need the support. The people with the disease who are feling good are generally out living life and not needing the support b/c they feel good.

It is so very frightening to hope for better days when we are feeling so lousy, but hang on to that little bit of hope, OK? I feel really, really good these days and I never, ever, ever imagined that I would ever feel this good again. I was in discomfort for quite some time and never pictured days without that discomfort. So HANG IN THERE and don't give up!!!! There are lots of things to try before you let go of that rope you're clinging to, OK? :kissing:

[kadi]

In the early weeks of IC, one night I was so desperate, afraid, in pain, unable to sleep, wanting to die (not really, when I look back, what I really wanted was escape from the fear that I would always be that sick) that I called the local suicide hotline. I found that number in the front of my yellow pages under Community Resources.. The volunteer helped me make a "for-tomorrow plan" (to call church for support in the morning) and a "get-through-that-night" plan...

Only a week later, I was referred to a urologist who gave me the first medicine that started to help me and within another week I was able to sleep through the night. That gave me hope that someday i would feel okay again, but it still didn't happen right away. But what I had learned out of that was things could change, and that maybe all my fears weren't going to happen.

I knew I needed help outside my family, but was discouraged when I talked about my illness to 3 different counselors and felt misunderstood even there. I turned to my church, which has a lay ministry program ("Stephen Ministers") and asked the director to please match me up with someone who understood chronic illness. It took several weeks, but I have talked things out weekly with my Stephen Minister for a year and it has helped a lot. This program is free. If you have a religion, you might want to check for this or a similar resource in your community.

I also called the ICN and talking with Jill there was really reassuring... (Thank you Jill if you're reading this!) Made me realize how very many treatment options there are and that there are people who live well in spite of IC.

The ICA also has "patient advocates" who will talk to you. I have talked with several who were really helpful & encouraging. You call the phone number listed on the ICA website & someone will call you back. Sometimes it takes a few days. You can also email the ICA and someone will answer your email within a few days.
www.ichelp.org.

So anyhow, those are a few thoughts...
...Yellow Pages for Suicide/Crisis Hotline
...ICN or ICA support
...Support from Church
...Counseling
For either support from church or counseling, I highly recommend asking for someone with experience dealing with chronic illness!!!!

Please don't give up! You are not alone - and there are many many treatment options out there!!! Do come back here for support, encouragement and practical info, okay?
Wishing you better days soon-
Love,
Kadi

[ICNDonna]

I urge you to call your doctor in the morning and let him/her know how you are feeling.

There are some things you can try that will help you feel better while you are waiting for diagnosis --- one is to put yourself on an IC diet. You'll find diet information in the Patient Handbook at http://www.ic-network.com/handbook --- some ICers find that single step offers a great deal of relief.

Sending warm healing thoughts,
Donna

[kittykitty]

I can't tell you how much your replies meant to me yesterday & today. All of you are truly, truly lifesavers.

I did call a hotline last night and that helped. I saw a therapist first thing this morning and that helped as well.

In terms of my diagnosing - I have a cysto/hydro skeded for first week in January. After that the doc and I will hit this hard...but first we need to see if I am pregnant or not -- should have that info next week.

You guys are so honestly, truly special. It helps to know there is somewhere to go fo support -- friends and family try but all of them have never really dealt with a chronic illness so it's rough on all involved.

Thank you again!!!!!! I've read your replies about 5 times in past 24 hrs...!

[jaime15]

I hope you find a treatment soon with the help of your doctor. And if you are pregnant, what a joyful way to start the new year! :)

Take one day at a time and remember to take care of you! I'm glad you saw your doctor this morning!
Big hugs to you................. :grouphug:

[vm]

Kitty - You sound like a go getter. When something was wrong, you reached out for help - and not just from one place. You will do marvelous - you are very proactive, girl!!!! I am glad the responses to your post were helpful. It always helps me, too. :)

[Alexa]

Dear kittykitty,

I think a lot of us have been in your shoes - sending lots of hugs to you :grouphug: :grouphug: I hope you find some relief and answers soon.

Warm hugs,
Alexa

[donutgirl]

Kitty...the number for the IC Assn. is 1-800-ICA-HELP...easy one to remember. They are extremely nice and helpful, just like here at the IC Network.

Diane

[Betsie]

Here is a forum for depression, this is actually a neuro based group, but if you scroll though the homepage, you will find quite a variety of coinciding issues etc. I am sure the hotline is better, but for that late night help or just to know so many deal with this, I hope you can check this out as well...Feel better!

http://brain.hastypastry.net/forums/forumdisplay.php?f=269

[mayray518]

I did the same thing Kadi in 1992. the hotline woman put me on hold and eventually said "what is really wrong with you". Now things are different I hope. Many of your friends might bail but not all of them. I had many who stuck with me thru thick and think as I would do for them.

[Imustpee]

Kitty..please, hang on...you will get better...you just need to find the right meds that will work for you..I have had I.C. for 38 years...I am very happily married, my son is 19 and going to college, and I am a music teacher and I LOVE my job..I have the cutest puppy in the world, and life is GOOD!!! Yours will be too...give it time....talk to us here when you are feeling down...we all understand...please email me anytime, and if you like I will send you my phone number.....take care...xooxx

[Betsie]

I am sending this with hesitance-please read with caution...I have not seen it, but it is a neuro board with many topics.....please read accordingly and don't take on other's issues....please. we will hang in with you too, but the folks here on a different forum are awesome....proceed with a guarded heart, okay?