Am I too optimistic?

[TaraTX]

I was diagnosed with IC on 9/27/07 and at the time I was in so much pain. I was so depressed and I thought my life was over. But since I have been on my meds and not eating things that I shouldn't I've been so much better. Am I fooling myself to think that it is possible to keep this under control enough to live a normal life. It just seems like there are so many bad stories and not enough good stories. Is it going to get worse???

[Claredale]

We are all different. Most postings I have seen show that early intervention can make your symptoms so much easier to handle.

Keeping my fingers crossed!

T83

[LauraLuLu]

There's no such thing as 'too optimistic' to me! I think it is GREAT to have a positive outlook, and even if suffering, it makes all the difference in coping IMO. No point worrying about things getting worse, you may as well enjoy that they are good! Cross bridges if and when you come to them is my motto. I have trained myself to be very positive-thinking though, but at the same time, accepting- you know, I'd like my health to be better and I'd LOVE to be able to not need to wee so darn much, but I am how I am, so I might as well make the best of it so I think it's great that you're feeling positive, nothing wrong there at all!

[dreamy]

What meds are making you feel better?

[lan]

I agree that you should continue to be optimistic! I would also like to know what meds are helping you. I hope that you continue to feel better and better. Linda

[Dixiefireball]

I agree keeping a poss. out look on life helps! Different things work for different people.
Some do Great with just the diet, others do great with their meds and diet. Just all depends on the person. I'm not going to say no you will never have another out break flare, but It really seems like your on the right path. Keep your reg. check ups with your Dr. Keep sticking with your diet, and most important keep living your life! Remember yes you may have IC, but it doesn't have to have you!
Best Wishes
Rhonda

[Berkshire Road]

It's great news that you're feeling better! Early intervention does seem to help.

I sometimes think people may get a somewhat skewed view of IC outcomes here. Because people who get better tend to leave. Those who stay involved in the forum are mainly (certainly not all) those who have had a more difficult time, either because they were not diagnosed for a long time, or have other complicating illnesses, or problems with meds, or for no discernible reason. It's always a help when people who are in remission or no longer have symptoms, continue to stay involved here.

I don't think you should let this stuff worry you too much. You feel better. Yes, it's possible that the IC symptoms could start up again sometime, but it's also possible that they never will. You need to go on living your life, and staying positive will probably help you stay well.

Congratulations on feeling better! Please consider sticking around here to help other newbies get a more balanced view of things.

[Claredale]

I have started to feel better and that is my point exactly. I had bad days that I vented a whole lot and now I am doing pretty well most of the time, and I want the newbies as well as people that have dealt with IC for years to know that being informed is the best way to get the treatment you need. I also still enjoy chatting. I would hate to disappear for a while, then come back whining. (That's just me...I definitely am not referring to anyone) But I have more time than alot of people and love to chat as well! My husband also like it that I "talk" about my IC with other people than him all the time. As much as he supported me and was wonderful, I know I drove him crazy when I would get so frustrated, so y'all got the brunt of it alot of the time!

Nite all, I am going to bed! I hope everyone gets some good sleep tonight!

Tracey

[TaraTX]

I am currently on Elmiron 100mg and Ditropan XL 10mg and occasionally I will take Ultracet for the pain when I am having a particularlly bad day. I am glad to hear that there is hope. I understand this is a place to cope and heal and especially vent, I just wanted to make sure that I wasn't setting myself up to fall on my face. When I was first diagnosed I didn't want to except that this was happening to me, and I definitly didn't want to except that it would never go away. But slowly I am starting to come to grips with it. Learning ways to ease the pain. Being tired and having no energy to do anything but sit on the couch is my main problem. Does anyone have any ideas on how to raise my energy level? I used to go play with my neices and nephew, and go out with my friends, now all I do is sit there. I can barley get up and go to work in the morning. I've missed so many days of work that I'm out of vacation and not getting paid. My husband lost his job a few months ago and is only working part time, so me not being able to get up and go to work in the moring is killing me and stressing me out which is not good either.

[OrlandoP]

I just want to give a shout out for those of us who never found medications that worked: it is possible to go into remission, and not get worse, even without medications. I'm one of those patients who has tried a panacea of drugs, none of which helped. Yet, after three grizzly years, I got better. Sometimes, I think the "early detection" idea works for some, not others.

So true, Berkshire Road! I wonder if it's possible to get a post going from people who had it, and have been in remission for a long time.

[ICNDonna]

One very important thing to remember is that for every individual posting here because they are in pain, there are literally hundreds out there with IC who are not in pain and don't need the support of the boards.

I feel good most of the time; I stay here because I remember how very alone I felt with my IC when I was first diagnosed (1975). I felt so blessed when I found this site that it has become a part of my life.

Keep that positive outlook. One of the things that has helped me most is that when I feel good, I absolutely refuse to allow myself to worry about how I will feel tomorrow.

Hugs,
Donna

[SharonA]

Tara...Good for you. I am very happy that you are feeling better. :)

I am one of the good stories. When I was first diagnosed, I was in horrible pain. Now, I feel good most of the time. I do get an occasional bladder burn, but that does not normally stay around for very long. I'm talking a few hours instead of days. I continue to post here because I want to help and encourage people that things can get better and that there is hope. Besides...I would miss everyone if I left.

[turnaround]

I, too, have been very lucky.
I was dx a year ago to this day. I thought I never would feel good again. I was scared and confused.
But I learned alot from these posts.
Through diet and meds-just Elavil actually, I am feeling 100 % better. If I do get a flare, I treat it promptly and it usually lasts less than 2 days. I agree with what the others have said. There a hundreds of people who feel too good to post!

[kuntrygurl78]

I think one of the keys to treating IC is to catch it early. I am one of those who has a very mild case. I credit that to having a good doctor who caught this early.

I go 80% of the time with no symptoms at all. I have found that diet and stress are my two big pain triggers. If I wouldnt have found this site, I would know nothing about diet and I would probably be drinking cranberry juice hurting my bladder.

I love this site. I not only use it for IC support, but for life support. The people here are so nice and so fun! I feel I have made friends. I dont just post about IC. I post about general happy things going on in my life. IC is only a small part of my life. I also like posting to show support. I feel like this site is my way of giving back.

Keep up the great attitude! And share your optimism!

[Joanie]

I was diagnosed in June 07, and was in constant pain until the end of Sept. I had about 10 pretty good days and am now hurting again. I too started worrying about when the symptoms would return, almost to the point of not enjoying feeling better. This is why I love this site. I read everyone else's thoughts and know I'm not the only one thinking the same things. Also, the pep talks really do help. They remind me that I have sooooo much to be grateful for and to stop feeling sorry for myself. I too tend to want to stay on the couch, but, I truly find that the pain sometimes recedes to the background if I force myself to stay busy. Of course it's still there, but I can get past it for a while. I wish I could help with the fact that you HAVE to work and your husbands situation. I wish you the best and keep reading all these wonderful posts, as I will.

[colleenco]

I sometimes think people may get a somewhat skewed view of IC outcomes here. Because people who get better tend to leave. Those who stay involved in the forum are mainly (certainly not all) those who have had a more difficult time, either because they were not diagnosed for a long time, or have other complicating illnesses, or problems with meds, or for no discernible reason. It's always a help when people who are in remission or no longer have symptoms, continue to stay involved here.

This is such a good point. I was on here all the time when I was first diagnosed and was going through that tough time. Now as time goes on I visit less and less. But I am going to make a point to stop in a few times a week now. I do wish there were mosre replies/posts from members who are feeling better. Those kinds of posts really helped get me through that terrible time.

Also TaraTX - about your fatigue - I was going through the same thing. I would come home and go right to bed, couldn't get out of bed in the morning, etc. I found that I needed to do that for a couple months and then slowly I started to try to do more. Now I am back at the gym and spend about an hour a day there. But when I first started back I would only be able to walk for 15 minutes or so. I am still not where I was before my diagnosis but if you take one day at a time, you will get there.

[helen newcastle]

hi I too am getting much better, I take antibiotics regullarly because i have urinary track infections before i ovulate and before my period, because i always have the antibioticas on hand i neve take pain meds anymore. before i had dmso, oxycontin tramadol and a whole host of other meds. i also had a bladder distensin, that helped me immensly. i went through two years of lying in bed, and seeing my urologist. now i have moved to Australia, i feel better as i have my own dippsticks at home so i can take tha augumenton as soon as i get the infection. i rarely have more than a day or two in bed a month, now, i thought i was dying from pain three years ago. i tryto stick to the ic diet. good luck to you all
\helen

[Annie2]

I'm really glad to see this post and see so many positive responses. We don't always post when we are feeling and doing well. Many who are doing well are so busy in their lives they no longer have time to come back and post their success stories. This is a great reminder to those of us who have had success as well as the time and passion to remain active on the boards to periodically update our success stories to give newbies the hope and postive inspiration they so desperately need when in the early dark days of their IC journeys.

Yes, I am another success story. It took awhile for me to find the right treatment and meds to help me, but I did find my way through the maze. My IC is under very good control. Frankly, I am dealing with other health issues that are difficult but know that, just as I gained control of my IC, there is every hope I will be able to do the same with my other problems.

When I was first DXed with IC, I feared life as I knew it was over. My husband and I love to travel and I couldn't ride in a car without pain and discomfort. We enjoyed eating out frequently and had a very active lifestyle. I liked to cook and so much was taken away by the limitations of the IC diet. I was afraid it was all gone forever. Not true! We travel quite a bit again (average about 20,000 miles of driving a year), eat out all the time (I've learned what my bladder will and will not tolerate so I can always find something on a menu I can enjoy) and are back to a pretty active life. Yes, I have to modify and adapt things to meet my needs, but I don't mind doing that so that I can keep going. If a bad day hits, I know it's just that...a bad day...things will be better again when it is over. My husband paid me a huge compliment. He said I had always been a pretty good cook, but now I am even better because I had to get very creative and learn to create flavor with a whole lot less I could work with. Life may have handed us a whole bunch of lemons and we can't make lemonaide, but we can use a little of the zest and make a pretty tasty alternative.

Hang on to that optimism. There's lots of reason for hope!

[karenapp]

No such thing as being too optimistic! I usually am, but I've had my worst flare yet this past week and I'm telling ya my positive attitude is in the toilet right now. I do go finally to the physical therapist on Tuesday for the first time so I'm hoping I can find some better strategies to deal with this. I have come home every night the past week, taken pain meds and gone to sleep with a heating pad between my legs. I'm getting frustrated hurting so much and the frequency is back with a vengeance too. I'm so glad I have this place to come to so I can vent a bit. My husband tries to be understanding but I don't think anyone can understand what we go through. I've eaten nothing but bland food since this flare started, it's getting real old. Anyway thanks for letting me vent....you guys keep your positivity, it is inspiring and keeps me from getting too down about this. :woohoo: :help: :loco: :loco: :hi:

[helen newcastle]

h I just wondered if anyone eles has constant urinary tract infections, I have them constantly for the last 7 yrs. i was on lotd of meds, oxycontin, to dmso, self cath with lidocaine marcaine, tramadol. then one year ago I bought Augumentan antibiotis in spain. as ou can buy them over the counter. this was for a bad throat. my pelvic ,back and ic pain dissapeared. my doctor said if it works try it. so I did, as soon as I came off, another bladder infection. I actually believe the infection has never gone away from 7 yrs ago. my doctor here in Australia has been great, I had a choice pain meds, and in bed with practically no life, or continued use of Augumenton. She told me it was my decision. telling me the downfalls of eac drug. I chose to stay on the antibiotis. I never have pelvic pain, I flare up only one or two days a month. usually before my period and then ovulation time. I tried to come of the antibiotis last week, but had E coli infection straight away. I also had terrible vulver pain. since stopping with the catheters and taking constant diflucan, every day, I no longer have vulverdynia. And belive me my vulver pain was so bad ,it was also in the clitoris. From being nearly suicidal , i have become as near normal as i could possibly wish for. I know in my heart, that the reason I had so much pain was the constant break in antibiotics. now Ihave my own test strips. always antibiotcs at home . so I never let the pain take hold. I never touch anything acidic. I lived in Houston for 4 years and had a wonderful dr there if any one would like to visit her. she is called Dr Karen Delhey. I also had great support while I lived in spain from Dr Daniel Brookoff, whom I have nerver met. But he actually gave me hope on the telphone and by email. I would love to write my story one day, but am not ready yet. but id like to say what a great job Jill is doing with this network. There are truly wonderful people out there, we just need to find them. This has been a journey for me through pain aswell as through humanity.
I know we will one day find acure for this disease, I feel it is right around the corner, we just need to keep fighting and believing.
love to all Helen
oh I needed to add I take Stilnox 20mg, its alot but it gets me through the night as I suffer from insomnia.

[karen10]

I too was recently diagnosed (although had lots of UTI's prior to that!). My dr thinks I have a mild case, and so far being very strict with the diet and using some natural supplements (I'm highly sensitive to most chemicals including meds) has allowed me to function most days. I also find that if I stay in any position too long, such as sitting or standing, it starts causing pain, but if I alternate all day long, I'm almost pain free. I do struggle with worry that it's not going to last, but I'm trying to not let that those thoughts go thru my head! I was wondering if meds are needed to help repair the lining of the bladder, and if I don't take them, will it continue to progress??
I also want to say thank you to all of the people who continue to post even after they are symptom free. It's SO encouraging to hear your stories and your reassurances that it can get better!

[karen10]

Annie--thanks so much for your very encouraging post! I'm so happy for you that you can do what you love again--travel and eat out!! I love to do both as well, and I'm considering going away this weekend (about 5 hour trip), but I'm feeling nervous about it! I LOVE your lemon quote! That's great. What meds have finally worked for you, and how long did it take? Did you try any natural supplements?

[karen10]

Okay, I know I've already posted twice here today :smile tee , but I just have to share another encouraging thing. My IC specialist (an OB/GYN nurse dedicated to working with IC--even the Urologists send them their patients!) just called me to see how I was doing and to offer me some encouragement!! I have such a great IC team! I couldn't do this without them and without all of you!! So, if you don't have a supportive dr or nurse, someone, maybe it's worth finding one!!! It makes such a difference!

[Agape]

I am currently on Elmiron 100mg and Ditropan XL 10mg and occasionally I will take Ultracet for the pain when I am having a particularlly bad day. I am glad to hear that there is hope. I understand this is a place to cope and heal and especially vent, I just wanted to make sure that I wasn't setting myself up to fall on my face. When I was first diagnosed I didn't want to except that this was happening to me, and I definitly didn't want to except that it would never go away. But slowly I am starting to come to grips with it. Learning ways to ease the pain. Being tired and having no energy to do anything but sit on the couch is my main problem. Does anyone have any ideas on how to raise my energy level? I used to go play with my neices and nephew, and go out with my friends, now all I do is sit there. I can barley get up and go to work in the morning. I've missed so many days of work that I'm out of vacation and not getting paid. My husband lost his job a few months ago and is only working part time, so me not being able to get up and go to work in the moring is killing me and stressing me out which is not good either.

:hi: You sound a lot like me. I am a worrier and when things are going well I find myself wondering how long it will last and if it will come back again. That is why I have to be on an anti depressant, because I believe stress is a big reason I got IC or at least it sure doesn't help my symptoms. I also think it may be one reason I have very little energy now. I only work part time, but when I get home, I have no energy to clean house or run errands. I feel like taking naps and I never did that before all this happened about three months ago. I am feeling better with the Elmiron, but still having trouble figuring out if diet plays a part in my symptoms also. Have you found out which foods you definitely should avoid?? I haven't had a soda since being dx, no tomato sauce, no coffee, no chocolate, but I still do have symptoms sometimes. My main symptom (once the pain was gone) is bladder pressure and just the feeling that I need to go. I don't go often during the day and rarely at night. I do think we can live a normal life, but since I am taking meds and having to be aware of my diet, IC is always on my mind!