View Full Version : I just found out I definitely have IC today...
10-26-2004, 06:43 AM
Why does it make me feel so sad? I feel like I could cry, or just roll up into a warm blanket and make it go away. I've pretty much thought I had it, and I thought I would better knowing, but I don't.
She put me on Elmiron 2x a day and Atarax 25mg at night and said she'd see me again in 3 months.
10-26-2004, 06:47 AM
Welcome to the board....here you will find many others that live daily with I.C..some of us all our lives..heck, it's all I know as I have never been " Normal", I have had I.C. since I was 6 years old. I.C can be treated, as I am proof..Between Elmiron, Nortriptyline, and lots of water I am going to the bathroom like a normal person, less than 10 times a day instead of 40 or more.... there is hope and you can fight back...
10-26-2004, 07:06 AM
I had the same reaction when I was diagnosed. Mostly because I was diagnosed and immediatley went online and found all kinds of scary literature about how my life was going to be over now that I had this disease - WRONG! The treatment options are getting better every day and with Elmiron and watching my diet my flares are less and less frequent and for the most part I'd like to think I live a very normal life! Don't be scared - there is help available and you will be okay! :thumbsup: I have found these boards to be a great source of REAL information from people who know exactly what you're going through.
But as a side note, every once in a while it is okay to want to curl up with a warm blanket and shut out the world. I think we should all do that once in a while - I.C. or not!
During the time when I didn't know if I had IC or not my emotions were all over the board... I got to a place where I was pretty sure I had it, but it hadn't been confirmed. I went to see my uro one day, still knowing in my head that I most likely had it and if I did it would be OK - I could learn to live with it.
Well, he basically said it was most likely IC during that appointment, and scheduled me for the cysto w/ hydro to be sure. I got in my car, drove home - bawling my head off the entire way home.... :( I was so sad - even though I was sure I would be OK knowing.
It really did get better and I didn't feel so sad even later that day. Once I had the cysto w/ hydro a few weeks later and had that absolute confirmation of IC, I was sad, but only a little. I was at a place of being glad to FINALLY know what was going on after spending months with a tennis match in my brain: "Do I have IC or do I not? Do I have IC or do I not?"
You will feel better. You are grieving and that is OK. Be gentle with yourself and let those feelings come. They will lessen and you will be able to get back to arming yourself with good information and with the support of all of us here. Keep that hope! I sit here 3 years after my diagnosis and I feel REALLY good these days. :)
Hang in there, sweetie. :kissing:
10-26-2004, 11:09 AM
Thank you all so much...I guess I just needed time for it to sink in. I know I'll probably get much better, that this is the first step, I guess I was surprised how much it bothered me to finally know. :thumbsup:
10-26-2004, 11:47 AM
IC is a shock at first. Especially since it means a change in the way you eat, new medication,bladder instillations, and physical therapy. That's if you have to do all of that. It will be alright. Just remember to take each day a at a time. Why is she going to see you again in 3 mo? You might want to ask for a urodymnaics test and bladder instillations. I have been going to my uro once a week since I was dignosed with IC. Chelsey
10-26-2004, 12:52 PM
:welcome: I know exactly how you feel. I was just dx last Thursday (with c/h), I have mixed feelings also. Heck yesterday I told myself maybe I really don't have it (but heck, I know I do the uro took pics and sent them home with me LOL). :bonk: How were you dx?
10-31-2004, 04:15 PM
The first uro. in May took 4 weeks to diagnose me and then told me to take the elmiron and come back in 6 mos. I thought he had lost his mind! I was still in pain, still experiencing all the symptoms and I wanted some answers. I tracked down a specialist nearby me here in Greensboro that is on the Board of Directors for the IC Association. The best thing you can do for yourself is become educated about your condition. Of course, coming to these boards helps a lot too.
10-31-2004, 06:17 PM
I totally understand and empathize! I was just diagnosed a couple weeks ago, had company fly in from out of state and we were busy the entire time so I just pushed it out of my mind and told myself I'd deal with it when she went home. I initially had mixed emotions... relief because I finally got a diagnosis and sadness to learn this is something I will have to deal with for the rest of my life.
Well,my friend went home and it hit me hard... I just want to go back to bed and sleep! I think I'd be lost without this board. The others are right, it's like we're grieving... it's just the first stage of learning how to deal with it. But we can take control somewhat and learn all we can about it.
Chin up, you're not alone. :grouphug:
11-01-2004, 01:37 AM
First I wish I had thought of that user name. :)
Well, I just want to tell you, I am sure anyone reading this can completely identify and/or remember feeling exactly like you are right now. I think anything that has the word Chronic illness attached to it feels this.
Like the others have said here, it is very likely that you can and will get back to a normal and active life, with a treatment plan. Mine has changed very little since my initial Dx, just some tweaks along the way.
I am also so aware of a recent discussion: essentially it was concerning the fact that much of what you read here is when people are feeling there worst. If I could find the thread I would quote it here. Essentially, at first reading this, you may tend to see people on their bad days and it furthers your own fears. If you really look around many are here, myself included to say we can and have responded to our treatment plans.
I have had chronic migraines for 30 years and I only wish I could be as successful with them as I have been with IC.
So, don't assume you are weak to feel the way you do, but if you trust us a little bit and can be patient with your treatment plan, I do think you will start to feel better.
For me acceptance was key. I would also urge you to read a book by Robert Moldwin, M.D. I think it's available on this site for purchase. For me it was like cliff notes for IC and still is from time to time. (If I was Kim (VM) I would include the link, but that is why I go to her for the better advice. ;))
Be patient with yourself and those around you. There are some really smart people available here and you can bank on getting great advice. :kissing:
11-01-2004, 01:51 AM
I understand completely how you are feeling - it's so scary and upsetting when you are first diagnosed! You wonder, will I feel this bad (or worse?) forever?
The good news is, you are starting medicines that almost certainly will soon have you feeling much better. Most IC'ers feel comfortable most of the time! So there is reason to believe you have already been through the worst of it and will soon get better!
It's okay to curl up sometimes and cry, or rest. Sometimes we need to do that when life is a little hard.
Blessings, and I hope you feel better soon,
11-01-2004, 02:48 AM
I think the worst thing is that many people think I'm a hypochondriac(because of all the time trying to find an answer to what is wrong), and now that I tell them I'm not, it's a real disease, they still don't believe me because they've never heard of it. So now I'm a hypochondriac with a quack disease. I try to explain it to them and they just look at me, like you pee a lot, so what? Even my husband doesn't really believe me. I ordered the survial guide, I can't wait until it gets here and I'm showing it to everyone who doubts me.
I also find that taking the meds is making more tired and able to do less than I was doing before the diagnosis which is depressing.
I grieved when I found out. My mother had had several autoimmune disorders and up till IC, I had never had any. I thought I had escaped, because hers showed up when she was quite a bit younger than I am. So, when I discovered I had IC which could be an autoimmune disorder, it was frightening for a number of reasons. She had 5 separate, though some were related, disorders. Hers led to her suicide due to the uncontrolled pain. I am very much hoping that I don't get hit so hard like that. But developing IC does concern me. So, I had a time of grieving.
Then I had to reflect on the fact that so much is available now for treating this disorder and I suspect for the disorders she had as well. After a year plus of treatment, I have many more good days than bad, plus I have learned to derail flares fairly consistently.
However, during a flare that hasn't responded to my attempts to derail it, my mood gets fairly bleak. One thing to remember, that I read on this site, is the majority of IC suffers who post here eventually return to a normal or near normal lives and are too busy living well to be on the boards.
:welcome: Glad you found these boards and this site, we all understand what you are going through. This community is very caring and giving. Feel free to ask questions, rant when you need to and seek comfort when it is needed.
11-01-2004, 10:21 AM
It is a horrifying diagnosis at first. Especially when you hear no cure. Things are better now with new research, the internet, etc. I was happy to find out there was a name for it after years of misdiagnosis. I lead a normal life now due to meds and you can also. IC is not necessarily an auto immune disorder. That may be the case but it has yet to be proven. I have no other diseases except IC. Everyone is different.
11-01-2004, 06:22 PM
:welcome: to the ICN!
I was told to stop spending so much time online scarying myself about IC when I first got diagnosed. But it turned out information helped to save me. It is impossible for those that do not have IC to understand...but that is ok...we help them to understand the best we can. When we first find out we have it there is a process we need to go through to accept it and learn about it...I am so happy you found us so we can help you through this time. Let us know if there is anything more we can do for you!
11-01-2004, 07:04 PM
:grouphug: :grouphug: Hi there, I was EXACTLY the same when I found out (abot 2 months ago,) I had been sick for so long and by the time I was officially diagnosed I basically knew I had it and thought I had come to terms with it (better knowing then not knowing and all that) but when I was actually told I fell apart. I came home, curled up in a ball and cried as though my heart my break. I screamed till I was just empty and drained.
It is horrible but so many people said to me at the time "this is the worst bit, it gets better" and honestly it really does. IC is horrible, there is no denying that and I still have days when I cry but you do learn to think more positively. My mum said to me "ok Sara, so you know what it is now how do you treat it??" She made me sit down and think practically and that helped me to cope. For instance
1) Join a health fund
2) Join a support group (a local one- it was a HUGE help)
3) Order books on IC and chronic illness from amazon. com
4) Resaerch drug options and alternative treatments
I did find that the IC diet was a huge help. It's so hard when you are in so much chronic pain to see light at the end of the tunnel but you'll get there. We are all here for you :) :)
Hi, and like to add my welcome to the IC network and family. I know at first when you are diagnosed, it is very overwhelming, it takes time to adjust, and I personally went through all different stages of grieving for my old life without IC. Eventually I came to terms with it, and with the right meds, and lots of information from the network, and from the message boards, and the gals, and our few guys, feel I am in control, and not my IC.This is a wonderful place for support and help whenever needed, and has really helped me in my daily life with IC. Hope that we can all help you and make the road with IC a little less scary. Take care and welcoming hugs Iris. :grouphug: :welcome: :hi: :flower:
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