View Full Version : Remembering what it was like as a newcomer to these boards :)
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. :kissing:
11-11-2009, 03:56 PM
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.
11-11-2009, 05:11 PM
Great post Kim!!!! :smile tee
There IS so much hope for New IC patients..
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!
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!
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.
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.:):)
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.
11-12-2009, 01:20 PM
:grouphug: 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.
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.
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!
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.
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.
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.
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. :rolleyes:
11-15-2009, 09:05 AM
One of the greatest benefits of these boards was the availability of information. I read everything on the ICN and then more. That enabled me to evaluate uros until I found one that was a good fit and who appreciated that I was learning as much as possible about all the treatment options. He's not a miracle worker or even an expert on IC, but his main concern is to make my symptoms go away, and to use whatever works and figure it out together.
Glenda, just keep reading and learning about what's available. If something doesn't work be systematic about figuring out why it might not have worked and move on to the next thing. You are the best advocate for your own care. Trial and error is the scientific method, and that's how all sucessful treatments are arrived at.
11-16-2009, 05:52 AM
Thank you so much for posting this Kim.
I was sitting here crying hysterically a few minutes ago reading how some people are still in so much pain after years and years of treatment and although I know that is very true for some, your post gave me hope that hopefully I can get back to feeling like you feel now. I love reading the posts here but once I log off all the negative posts stay in my head and I obsess over them and think my life is over and that I will be the person that nothing helps. I know I have a very long road ahead of me as I am new to all of this, but I think I work myself up a lot and make myself a lot worse with my negative thinking that I am going to be in pain and peeing every 5 minutes for the rest of my life. Thank you for your inspiration. I am SO HAPPY for you that you are doing much better now than you were when first diagnosed!!!!!!!!!!!!
11-16-2009, 06:04 AM
Hang in there Strawberry....it gets better with a little time and trial and error.
11-16-2009, 08:08 AM
Such a wonderful post! Thank you Kim... it was just what I needed :kiss:
11-16-2009, 08:33 AM
Glenda, I found a new dr. after the first one told me that Elmiron was the only drug for IC. I am allergic to it. In fact, it took me four urologists to finally be with a good one. Maybe it would be a good idea to find a new urologist before the weather gets too bad & you are snowed in. This site has a great physician finder. Best wishes!
11-16-2009, 09:11 AM
I swear, a month or two ago I was telling my manager at work about this forum, and how WONDERFUL it was to have found it. Suffered for years, was misdiagnosed, well, I think most of us know the story. I also told him you know what? If (when) I get better, there are a few people I want to thank. There is a lady Kim who has stuck around although she is doing much better these days, and she has given me so much hope.
So Kim, here it is - I'll thank you again when I get to the point of being asymptomatic, but let it be known now as well. Thanks so much for sticking around. You've given me and so much others a lot of hope :).
What an awesome group of people we have here!!! :) You guys give so much to ME!
I've told some people this before, but of all the hopeful posts I read when I first came to the ICN I only remember ONE specifically. I remember the general idea of many others - and have always remembered Donna's reminder about "people who feel good not being on the boards as much" and so on. But the one I clearly remember was someone saying she'd been able to eat lasagna again. :) So, we never know when we type out a post the impact it may have on someone else - silly as it may seem to us. I remember reading about that lasagna and being so happy and filled with hope that maybe, just maybe, I would be able to eat it again, too. :)
This thread makes me feel so good b/c I never know what lies down the road for me and my bladder. I know things can change. I love knowing that these boards have as many warm, supportive people as they did back when I first came around. I may need you to help hold me up again! To make sure I don't forget that there is hope. I'm reminded every day that should I feel bad again I have a place to come and friends who will help me.
And thank you for the kind words. They mean A LOT to me. :) Love you guys.
11-18-2009, 11:41 AM
Thanks, Kim, I really needed this. I just found this forum about a week ago. It seems like a LOT of information to digest. I haven't been diagnosed yet. But I have already found some things that help control symptoms.
Thanks for giving me hope! *hugs*
11-18-2009, 01:21 PM
I'm new to this website, and I'm newly diagnosed with IC.
I appreciate your encouragement. I'm not sure how all this posting stuff works. But, I'm glad I read yours.
11-18-2009, 05:04 PM
:welcome: to the ICN Cindy!
11-29-2009, 10:37 AM
Since you eat what you want, do you ever worry it will have adverse permanent effects on you later?
My doctor insisted that anything food did to my bladder would be temporary (flare, not permanent damage)... but I still cant muster the courage to have a drink of alcohol.
I've only been on Elmiron for three months so I cant say whether or not it is working yet.
I think there's some debate about whether the trigger type foods could still be hurting the bladder - even when you're in remission. I've been eating whatever I'd like for several years now with no ill effects at all. (Did NOT start doing that until I was pretty much symptom free - I totally did the IC diet before that.)
Depends who you talk to on whether or not they think it's advisable or not. It's very individual. I have chosen to go ahead and eat the foods and drinks now. Some may choose not to do that. My thought is that if Elmiron is coating the bladder (and we really don't know exactly how it helps), then my bladder bis pretty safe for now. Others may disagree.
11-29-2009, 11:49 AM
Agreed; there's nothing you can say about IC or remission that applies to everyone. I have been on Elmiron for nearly a year now, and my symptoms were vastly improved after even two months. Although I am eating lots of things I did not eat before, my bladder does seem to have it's limits. I am able to eat most all fruits and berries except citrus, a small amount of mayo, modest amounts of chocolate, an occasional cup of weakly brewed white tea and very modest amounts of alcohol. I still stay away from coffee and black tea, tomato products, soy sauce (I can eat tofu) and all vinegars. Too much alcohol can still send me into a relatively mild flair, and so can too much of any of the seriously problematic foods.
My doctor is the first one to admit that there's very little data about how Elmiron actually works and what the long-term effectiveness of it is. His advice is to stick to whatever works best and use my own judgment about experimenting with food and drink. Just as Elmiron doesn't work for everyone, it also doesn't work equally well for all those that are helped by it.
Just wanted to pop in again to say "hi" once again on my 9 year anniversary of joining the ICN. This is a quick update to say that I am doing as well as I was when I started this topic last year. The Elmiron continues to manage my symptoms completely. If I forget to take it for awhile I may feel a twinge of the symptoms, but they resolve once I start the Elmiron again. I can still eat and drink whatever I would like and am so very grateful for that.
Hope others are doing well. To anyone new - HANG IN THERE! It is true that most with IC do go on to find treatments that really help manage their symptoms. :)
05-19-2010, 02:08 PM
9 years! Wow!
I think it's wonderful that you continue to post here even though you are doing well. That ray of hope is so important!
05-19-2010, 03:54 PM
Happy ninth anniversary, my friend!
05-19-2010, 05:56 PM
Thank you! I'm newly diagnosed, and I have found so much information here that has been helpful. I'm already starting to see some gradual improvement, so I'm really encouraged by the successes here. Someone in my local IC support groups says that they have over 250 members, but meetings tend to only be about 5 or so people; this is partly because everyone else feels better. That's such great news!
It is important for us newly diagnosed people to have others around who have been through what we're going through and can be an example of success. It helps us take a positive approach towards finding our own treatment path. Thanks to you and the others who have been hanging around - I for one really appreciate it.
Hi, again, fellow ICers! :)
Another follow-up almost a year after my last post on this thread. I am still feeling very good and my only IC med continues to be Elmiron. I can eat and drink anything I'd like, which sure was NOT the case when my IC started. The Elmiron, even taken somewhat infrequently, keeps the flares away. If I forget to take it for a few weeks I'll get twinges of a flare, but as long as I don't go that long my bladder behaves itself.
To anyone newly diagnosed, please maintain hope. Most people with IC truly do get to a place where their symptoms are mostly under control. Hang in there and pay attention to the positive people here at the ICN! They helped save my sanity so many times. I will be forever grateful to the ICN. :)
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