Remembering what it was like as a newcomer to these boards :)

vm · 11-11-2009, 03:16 PM

I am thinking about what it felt like when I discovered these boards back in the Spring of 2001. My strange bladder symptoms had started in March and by April my OB/GYN mentioned the dreaded words "Interstitial Cystitis" to me as a possible cause.

Of course, I got on the computer and googled and googled and googled. I eventually found this site and what a RELIEF to see all these other people who were dealing with this. No one I knew had ever heard of IC - except my doctor!

At the same time I was feeling relief and gratitude for finding all this wonderful information about IC in one place, I was also scared to death that I might actually have IC! I did not want this disease. At all. One of the first things my doctor had told me was that it was incurable - but treatable.

The ICN helped me fill my toolbox. I learned about symptoms, treatment, self-help tips and all about other patient's experiences. I was much better equipped to work with my urologist as we went about our detective work b/c of the ICN.

However, sometimes as I read the message boards I got scared. I would log on looking for information to help me feel hopeful, but would log off crying and scared to death. My brain would somehow hone in on the "scary" posts. I gave more weight to those posts. I could read 3 posts about people who got better, but my brain would be sure I was going to be like that one person who has never had relief from the pain. Same thing went for reading about reactions to medications.

I would forget or didn't know that people were MUCH more apt to post about bad experiences with medications than about how taking a med was no big deal. I forgot or didn't know that people who felt better did not come to the boards often b/c they didn't need the support. Why would they come here - they felt good and don't need information about treatments. People who are doing fine with a medication don't normally post with as much frequency as those who have experienced bad side effects.

I will be eternally grateful to people like ICNDonna and Jill who always posted reminders about those things when I was new. To help me remember that most who feel good aren't posting here (thank God those two stayed!) and that you will read far more horror stories about meds and procedures than the positive stories or the uneventful stories.

I have tried so hard to remember that when I post. And I made a commitment to myself to stay when I felt better. I have had hiatuses from the board, don't get me wrong, but I remember how much hope it gave me to read posts from people who were doing OK. That keeps me coming back.

I love what Jill has posted at the top of the forum:

OUR WORDS have the power to inspire or discourage other patients. Whenever possible, write ENCOURAGING messages.

We have to remember that. It's easy to forget what it felt like when we were new. I know I forget. I am so grateful for all the folks here who, even when they are in pain or have had a bad experience, keep it in perspective in their posts. They remember the new man or woman sitting at their computer at home, searching, scared, hanging on every word they read here. I am so glad those people were here for me and that so many people have come after who continue to do that. Let's never forget, OK? Love you guys.

**Snowden1** · 11-11-2009, 03:56 PM

Kim,
Thank you so much for that post and thank you so much for staying here to help. I have found you to one of the people I focus on the most because you can actually eat everything ---- I want this too. You guys are the ones who give me hope to continue to search for answers and not give up.

It is good to be reminded that most people find a way to deal with this illness.

I use to only come on the board to look at remissions - that is all I wanted to see. I wish people would post more success stories - I print them off and put them all over my house to give me hope.
Thanks again,
Teresa

**leelee88** · 11-11-2009, 05:11 PM

Great post Kim!!!!

There IS so much hope for New IC patients..

**VickiB** · 11-11-2009, 06:48 PM

Yes, great post Kim! You'd said, "My brain would somehow hone in on the "scary" posts. I gave more weight to those posts." That was me too. And who wouldn't hone in? Those scary posts make one heck of a strong impression!

My first post back in '04 was something along the lines of "Will I ever get better?" A number of people answered that I most likely would, -you were probably one of them, Kim, as was Donna. And that's exactly how it turned out for me. I am way, way better than that day when I first logged on!

I owe a lot to those who blazed the trail for me here at ICN! Thank you all!

Vicki

**Rainwilds** · 11-11-2009, 11:55 PM

... I was just about to sign off when I read this post.
It was exactly what I needed. I am having a very bad time coping with my IC at the moment and so I came on here ...

But it seemed that all I could focus on was all the bad, scary stuff.
Thank you for reminding me that people do get better from this!
You have given me hope - thank you so much for posting!

**nottoc4** · 11-12-2009, 01:42 AM

This site saved me from horrible depression and gave me hope. In less than a year of treatment from my Dr. and telling him about things I have read here and we tried,I am just about symptom free. I didn't want to take Elmiron for fear of losing my hair,but I did it.(I didn't lose any)I didn't want to do bladder instillations but read on here that many have had success with it so I did it. Following the IC diet was also key to my treatment..and keeping a journal.I found that many of my other medications flared me and one by one all triggers were just about gone.I didn't want to take an antidepressant but I did and it helped so much with pain relief.
I am not cured but I do feel like I am in a medical remission of sorts. One by one all the bad symptoms with IC have disappeared and the only thing left is getting up 2x a night to pee.Hang in there everyone...things will get better.

**Bojana** · 11-12-2009, 03:26 AM

Great post, Kim. I am doing the same, I can read few good hopeful stories and posts and then I read something bad, like meds not working and how severe some people have it and I also get scared to death that my IC will go worse and worse and..you get the picture.

So thanks for the hope and reminding myself that people do indeed get better and to focus on that part more. I guess my problem is also that in general I am very inpatient person and I like to get better like yesterday and find a med that works for me in first try.

***SharonA*** · 11-12-2009, 08:05 AM

Kim...This post is why I love you so much. You were here when I first arrived on the scene and you became someone I looked to for calm and sound reasoning. There have been a lot of comings and goings over the years on these boards, but there has been only one vm. I was a very happy camper when you came back after your latest hiatus.

(((Hugs)))

***ICNDonna*** · 11-12-2009, 01:20 PM

I'm so glad you are here. We need you.

And you are right --- for every treatment option available, you can find at least one horror story --- thank you for helping to put them in perspective.

Donna

***dyno*** · 11-12-2009, 03:20 PM

Kim... Great post! You are so very right and it is so easy to forget sometimes. It is so important for everyone to remember that there is hope with IC.

We all have those bad times and during those times we need support. You and all the other caring people on these boards have been here for me over the years. I still look for you when I need support. I am so glad to have you on here and as a friend.

I also have made it my goal to try to help those who have questions and need support. I know I need it sometimes and want to give it to those I can when they need it too.

***Julie B*** · 11-12-2009, 05:39 PM

What a wonderful post! I agree whole heartedly......I can remember coming here (in 1998!) and all of a sudden there were people asking the same questions that I was. Even the scary posts weren't scary because for the most part I was say "That is me!"

XOXOXOXOXO to you all!

**Glenda2** · 11-15-2009, 05:42 AM

Being newely diagnosed with IC on October 12th of this year , I googled everything possible for this illness.

I was very relieved to find this Fantastic IC Board , with so many wonderfull people all going thru the same nightmare as myself.

I think the only thing that disappoints me is > the Medication used to treat it cause's me Problems.

So that put's me at a disadvantage for treatment.

OTC's were discouraged by the Doctor , but Highly recommened by all the ladies here.

So , being that Rx's can't be taken , I have to switch to the OTC's.

There's always going to be Horror storys out there that we read , and there's alot of positive one's too.

Mine , so far , haven't been too good for myself.

But I won't stop till I am feeling better.

***ICNDonna*** · 11-15-2009, 06:12 AM

Glenda, there are many, many medications that can help ease IC symptoms. Elmiron isn't the only thing that can help. I can't take elmiron either, but have found ways to feel better.

Donna

***kadi*** · 11-15-2009, 06:17 AM

Me too! I also can't take Elmiron or Atarax & I am allergic to many, many medications & foods, but have gone through the process of trial & error to find a treatment plan that works. I won't tell you it was fun or even an ok experience. It wasn't. It took a long time to try medicines one by one to see if they would cause a reaction.
But today I have a good quality of life again and it was worth the struggle.

**Glenda2** · 11-15-2009, 07:41 AM

If there are other Rx's to treat IC , why didn't the Urologist tell me this , and perscribe them to me ??

Maybe I am confused about all of this.

He told me Elmiron was it , plain and simple.
But Darpaz and Pryidium and Prosed were used too. (Tried all 3 ).

I do take Ditropan ( Oxybutinin ) Once daily. Been one it One year.
Doesn't appear to help , that I can see.
Was on Detrol prior to this for One year. No seen benefits.

I guess my last options are the OTC's.
So I have been reading up on them and their ingredients.
I see Good things and possible Bad ones.

It'll be trial and error I guess from now on.