Why won't they listen?

[pottywoman]

I don't understand why no one will listen to me about the IC. It doesn't help me when they bring it up or say "it's fixable" just haven't foudn the right doctor. I was taking the celexa again but quit. Figured why get fatter for no reason. It doesn't help when people bring the IC up. It will be 9 years now and no one still understands this or how I feel. I give up I guess. I can't win no matter what I do.

[BellaTutu]

Pottywoman,

what meds are you currently taking? I see all the ones you've tried in the past and then another list - are you taking those currently?

Honey, sometimes some of us IC'ers just get stuck feeling pain every day and although pain meds do help take the edge off just a bit - there is still that daily pain we experience. Some go into remission (wish I would) and others yet just need a diet change to manage their symptoms. Its a crap shoot and a roll of the dice I think, which is why some respond and others dont.

Dont lose hope - maybe you need to try some different meds? I know nothing conventional or unconventional has worked for me (instills, hydros, oral meds, TENS, RSI4 Stimulators, ESTIM, biofeedback, you name it I've been there and done it) - but I'm not going to let this disease (and all the others I have) beat me up and win. Its hard, but we have to continue hun....

We're here for you.

[amber sevy]

here are so many of us that feel the sameway that you do . I am one of them but with eachday I try to keep the faith that I will get better. I can deal with the peeing all the time it is the pain that just will not stop. I wish so much that could help you but please know that there are others out here that do know and understand how you are feeling. I just pray that you will find hope again.
((((( Bella thank you for your words they helpped me also.))))

[pottywoman]

I guess I'm at the tired point of this. They keep telling me to read this or that and I tell them I've read all I need to know and I don't want to read anymore about this or hear about it. The only way I can "live" with it is to pretend none of it is happening. The peeing is better from the heparin but the pain keeps getting worse. Some days I'm so tired (from not sleeping and pain) that I just sit most of the day away. I gave up making plans because I never know how I feel. They tell me if I don't feel good then sit down until I do. I would sit 24/7 for the rest of my life. I just want to be left alone on this now. I have it why I have no clue.

The second list of meds is what I am taking now. The only thing I have for the pain is the tens and that isn't really much but I know now I couldn't live without it. I just really don't know what to do anymore. Seems I can't win no matter which way. I also really have nothing going on in my life and never will. I'm old, no kids, no husband, no friends, no relatives...just no one. There really isn't anything to keep trying for. I just live because I have to. Each day is the same.

[BellaTutu]

Sweetie,

First and foremost - you are NOT alone and you do have friends and people that care about you - and those people are here on line. Awe honey, you're never alone, do you hear me? We all know there are days when we can get extremely low with this disease, then add 6 or 7 others on top of just the IC and it feels like there is no way out of the corner you're painted in. But you have a choice - you can sit there and think about a stragedy while waiting for the paint to dry and walk out with your head held high; OR you can slump down in that corner and instead of using stragedy and patience (paint takes a while to dry you know ) - you completely give in and walk across the floor, tracking paint whereever you go and then its always with you. (alright, dont ask me how I came up with that analysis but..hey, it works for me).

I told someone earlier on here that this disease is not a death sentence, although there are days when I absolutely feel like you do (and so do so many others) where we just want to throw in the towel because we are damned if we do and damned if we dont. I suppose I've adopted that attitude - "I hurt if I sit around and do nothing - so might as well hurt doing SOMETHING - ANYTHING is better than nothing". But you're not alone in this fight sweetie - not by a long shot.

Have you asked your doctor for different pain meds that you havent tried yet? Have you tried another pain management clinic? How about hot water bottles, heating pads, soaks in the tub? The Vicodin - can you take some phenergren for the nauseau it gives you to take away the sick feeling? I know I had to take it until I got used to my 24 hour morphine for about 2 weeks, and now I'm good to go, no nausea. I know it all sounds so cliche "Just do this and you'll feel better" - I dont mean it to sound that way at all, I'm merely offering what sometimes makes me feel a little better - especially in the morning time. I get so stiff and I feel like I'm 150 years old for the first 2 hours after I get up, but soaking in the tub for about 20 minutes helps to losen me up and although I still hurt each and every day, I do feel a little better than when I started.

We're here for you - dont ever think you have no one in your life - everybody has somebody and remember this: to the world you might be one person, but to one person you might be their world.

gently

[pottywoman]

It's funny how you analysis with walking on paint. I was waxing the floor yesterday and after starting I relized I had to start from the other side of the room or i would be waxing myself into the corner.

I feel like I"m damned if I do and damned if I don't. Plus I hurt actually more if I sit for too long and always thought if I get one thing done in a day then that was a good day. Strange how great minds think a like. I never hear anything good anymore unless it is from my uro. I just don't really have it in me to fight anymore.

My uro gave me something to use for being sick. Had that a lot before using the cystoprotek just from the pain I guess. The thing is the pain pills only help for about 1 1/2 hours and that is as long as I lay down and don't move. No one wants me taking them so I don't have any. Drug addicts take pain pills or other people have pain. I didn't want them for all the time just for days when I had more things to get done. That's all. It was nice to be able to lay down and feel it start working. Pain went away from top to bottom. It was like a big relief.

I have a hard time getting up in the moring too just like you. Wow, how intersting. I'm not a morning person anymore and everyone thinks I'm mad. I'm not I just don't feel good and need a few hours to get moving.

Heat makes the pain worse. I use to sit with an icepack on in the beginning and when I went to bed but during the winter I just about frozed. Soaking in the tub sometimes helps but most of the time it doesn't. Have to take the tens off and when I do that 2 minutes later it feels like I've been hit in the stomach. One thing I don't understand the tub water has to be really really hot to help but yet if I put heat on it that makes it worse.

......to the world you might be one person, but to one person you might be their world.......Thanks Wish I could find that someone. I know I can come here to all of you but I guess I want someone in person.

Thanks Bella

[Janette Rass]

Pottywoman, I totally know where you are coming from. It is very difficult if not impossible for others to understand how hard life with IC is. Remember you are not alone, there are lots of use out here sufferering too! I guess that's not so good eh, but that can't be helped. An IC buddy & i started a local support group & that was a life saver for me. I connected with another fellow ICer & we are now good friends. Often our get togethers are postponed but we each understand & just catch up over the phone. Perhaps you uro knows someone. Until then just keep dialing in & we'll help if we can. PS have you tried B&O suppositories for the pain , my uro gave them to me. They work directly on your abdomen rather than going thru your digestive system, perhaps they might help. Good luck & A GREAT BIG WARM HUG Janette

[glenda]

Pottywoman,

Hi! I want to just say I know exactly what you mean by needing the support of someone in your "real world". This cyber support is helpful, but it just doesn't seem like quite enough, it's not up-close and personal enough. Keep your chin up, and keep reminding yourself that you're not on this boat alone. I am one of many who really do understand your anguish and I care! Hope that helps some.

Bella Tutu, That was a great analysis!

Glenda

[Baba Yaga]

PottyW, who is this "they" you refer to in your first few posts?

Did you see that somebody posted about getting great help with their pain from something called Topamax (topamirate)? You probably didn't know about it, or the fact that it helps people lose weight. It really seems to me that you should be using an antidepressant, both for your IC pain, and for your well being, which is clearly so low right now. How much time were you on the celexa? Did you discuss any other antidepressants with the person who gave you the celexa prescription?

Have you looked through the new cytotec section yet? It may be just the thing to help you start tolerating ibuprofen for your pain again. And on top of that, even without ibuprofen, it helped one or two people with their bladder walls all by itself.

These drugs that you say made you sick, like the vicodin and the ultram -- did they make you sick to your stomach, or sick in some other way?

[tigger_gal]

remember you have IC, IC don't have you. as hard as it is sometimes we can all pull thru.. my mom has had IC for 38 years.. they like to kid her at the urs they say she would be in the book of records for the most hydros ever performed on one human... she use to get them every 3 months for 20 years....
sending you big hugs and good vibes..

[pottywoman]

There was an IC support group way back when this first happened. My uro told me about it but I found out it was 40 miles away, held at night time during the week. I didn't feel good enough to travel that far and at night not knowing where all the bathrooms would be. Some of the travel would be on highways where there were no bathroom stops. They closed the group about 4 years ago I think. Only 3 people ever showed up.

Someone posted on one of my threads about the Topamax. Did some research on it on the internet and saw it had a lot of side effects to it and most of them seemed kind of "bad". After seeing them I didn't dare to try it. For some unknown reason I have a hard time with pills and can not for the life of me figure out why?

The first time I took the Celexa it was for almost 1 year. It really helped but then I kept hearing how fatter and fatter I was getting, which mind wise does not help either so I stopped. Yes, my uro has talked to me about all the different kinds and for a long time he wanted me to take one and I wouldn't. Finally, after breaking down and crying non-stop each time I went there and I was on the edge of ending it all I tried.

The cystotek I need to be on birth control and they won't let me have that without having the physical which I won't do. Long story why but I can't.

Tiger gal I can't imagine having this for 38 years. SHe must be a strong person.

Maybe if I actually had someone to help me through this all I would deal with it easier or if things had gone better along the years with this I would think better. Just seems like I ahve lost everything slowly with each passing year.

Now I wonder if I should tell my Uro about those two pills or not. Would you dare to take them if you had about every side effect there is with each pill?

The vicodin/ultram made me sick (throwing up) and the ultram made me so dizzy the room was spinning. I had to lay in bed. Just blinking the room would spin plus it didn't help with the pain. Doc said it was not addictive. Nothing like a pain pill so thought nothing would go wrong with it.

Thanks for all the help.

Just noticed I need to practice my typing.