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  • icnmgrjill
    replied
    Hi everyone. Well, hmmm.... hmmmm... hmmmmmm. Okay... I don't know my "posting rules" message has become a discussion topic... but I'm actually going to close it... because I want you to post seperate, new messages instead.

    Let's just remind each other, yet again, that none of us has the right to JUDGE anyone else in this forum, nor should we ever question their experience. We don't live in their shoes. We haven't carried their burdens. We haven't sat in those doctors offices with them. Thus, we have no role nor responsibility nor right to question anyone elses experience. Please give everyone the space to discuss their failures... without making them feel like they have to justify it. WE can't justify accidents... nor can we justify a device or surgery that doesn't work as it was intended.

    No guilts EVER please!

    Jill

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  • patricia1
    replied
    I dont thinking locking them up is going to help. If you think about it people come here looking for advice on the Interstim and locking up all the boards of the Interstim is doing a dis-service to them. I wish that when I was doing my research that I had that we have now about the Interstim it needs to be out there. And like you said opions are just that opions. But it can be hard not to take what someone says to heart, I have a few times, but now I dont because all I want to do is tell my story and if it offends anyone so be it. Just like your story I am so proud and happy for you, because I know how bad it was after you had your little one and I am happy it gave you your life back. That needs to be told, dont you agree. It is something postive about it, but I also feel for the others and feel that their stories are just as important.

    We just need to be there for one another, because having IC is hard enough to deal with, with drs not knowing what they are doing to families not showing enought support. But also with us ICers who have had the interstim good or bad need to be there for one another and show support and love for one another..

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  • Dusty
    replied
    Wow Leslye, I know exactly what your talking about and your friend. I do not know if you got it all worked out for you. I hope you did. As those added pains to the body really wear on you. I have the Fibro, IBS, Migraines and so many things added besides my IC..and so when you get extra pain also from the interstim it is very discouraging and when you did not get the results you had hoped for I am sure you were really brokenhearted. I am sorry you have all of that to deal with and hope it all works out for you real soon. Just know that your not alone in those problems and others have experienced them also. It will get better. I definately know it is hard when going through it and it seems like it is never going to end. I hope you too have a good day today and get some relief from all you deal with also.
    God bless you,
    Dusty

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  • Dusty
    replied
    Yes, Patricia I do know what it is like to run to those appointments and to drive constantly to get there also. I had to travel two hours for me and it did get old. I had constant reprogrammings also and that got old. I do understand where you are coming from and if you feel fine with taking a break from all of that then do so. The trips and appointments alone wear you out. I hope you can find something enjoyable for now and help give yourself that break from all of that.
    I know your weather is kind of hot down there too as my friend lives there too where you are. We are having hot weather also and need some rain real bad. I do not know what you do for sure for fun or what your hobbies might be. I know when I got real fed up with my problems with interstim and appointments I tried to do some of those things to break the all the time dealing with interstim. Let me know what you like to do and so on and we can chat on that one too. Whatever helps you for now will be worth the time.
    I hope you have a good day too,
    God bless you,
    Dusty

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  • dancemomof2
    replied
    I honestly think it is time to lock all the Interstim thread and forums for awhile. No one should ever ever get to the point that they are emotionally stressed to that point over opions. If you are thinking thoughts like I have read you really need to seek professional help. Opions are just that "opions" and no one needs to work themselves up over that.

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  • tigger_gal
    replied
    I couldn't agree more, that these boards are for people that had a bad experience with the interstim..
    The ones that have good results, should post on the success borads.
    The ones that had a bad experience should not post on the success boards..
    Thats why we have a failure board and a success board to keep them seperated..
    I think it would be a great Idea if someone posts a sucees in a failure board or a failure in the succes board it should be removed...
    Hopefully all will work out and be well again..
    Brat
    Last edited by Brat; 07-14-2005, 05:29 AM. Reason: fixed typos

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  • patricia1
    replied
    Cindy I saw your post right after I did mine and that is strange, because I know I saw it. Really werid....

    Thanks Dusty it does get old. Its an hour drive to Shreveport and hour back home and I just dont care to make that right now. My mom is after me to go back and get it readjusted again, but I am so tired of dealing with it that I just dont care right now. She does not understand and feels I can jump in the car and go at the drop of a hat. So right now I am on my Interstim Vacation. Its on I have not turned it off its just not where I want it and for right now I dont care....I am sure you completely understand where I am coming from. All the pain I went through for the revision its just upsetting, but I spent so long going from doc to doc, hospital to hospital, phone call from phone call 20 months of this I am through with it for the time being....Thanks again.

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  • Dusty
    replied
    Patricia,
    I know you have tried to get things fixed for you with your interstim for sometime now.
    I am so sorry you are still not where you need to be. I don't blame you for taking a break from getting help. I remember reaching that point myself even. I just had to step back for awhile as it wouldn't program right and I got tired of running to the doctor over and over on a weekly basis. I had the revisions and all and still problems.
    It does get old going to the doc always doesn't it? I agree with you for now if you don't have the serious issues going on and no curling of your toes and so on..then take a break from the docs and let yourself get revived. Maybe there is something that will bring you some relief and enjoyment for now. You hang in there as I am sure all will straighten out for you too and for what is best for you.
    You take care please and thank you for your kind words.
    Dusty

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  • Dusty
    replied
    This section of the boards is for people who have had problems with interstim, are having problems with interstim, need help and support for these problems, are afraid as they were under the understanding they were the only ones, are seeking help for the problems they are having, and support to know they were not alone and are not alone. There is no black or white here on this issue...if your having problems and have had problems, or have damage as a result of interstim then here is where you belong as you need help from others that have been there and not from those who have successes..as that story is a different area...so as Jill asked please keep this section of the boards for those who have had difficulty, are having it and need the support of others that have been there. This is not for people doing O.K. they need to post under success. That is where the problems come in for those having trouble as they get too confused when those with success posty replies. Frankly it makes you feel very torn and makes it hard to understand what is going on.
    No one pushed me from the boards as no one does that in life to me period on anything. I did however get tired of defending myself and trying to justify my damage and so on. I will not leave the boards again due to that as I feel that is not a help for those that need help with interstim. I am sorry and do not mean to offend anyone but this section of the boards is for what Jill posted it to be for...that way those of us with damage, problems and so on can feel free to post without being made to feel worse. I am not for or against interstim. I am for those in need of help getting it and not being made to feel they cannot voice these difficulties safely and get the help they need. As Patricia will tell you and Tracy will tell you those of us that have been there are a great help to those who are going through difficulty with interstim. Those who have not had these kinds of problems and damage can't. I have walked in the shoes of those in trouble so I know. I can relate to what they say and confirm yes that does happen with the interstim. I am here to give support and help answer questions for those in trouble or experiencing things they never expected. Lets keep it that way as it is not important to me who upset me or why. I have the damage and that is that. I cannot control what others think or say. I do know what it is to get shocks down the legs, other parts of the body, in the tailbone, generator implant site, pain that you did not have before and so on, doctors abandoning you and all, physical therapy to get some of your ability back and so on, how to file reports with the FDA, whatever anyone needs that is not a success. I am sorry and will be frank successes do not belong here as you have an area for your post. I stay out of there because I can not relate to that and so I have no business being in there. I can relate to those on the other side of interstim. Those people need help and need it when they seek it whether it be just to listen or to get advice on what to do. As Patricia said this area of the boards is not to argue or to debate interstim...it is to get help to those in trouble or needing support for things gone wrong......I hope I can contribute to keeping it that way. Those of us with these problems need that. Those of you with success can talk happily about that also in the area for you. As you can relate to each other. Those of us with trouble do not need to feel worse.
    Dusty

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  • tigger_gal
    replied
    I posted and now its gone..... wierd!! any one else ever lose there post?
    Brat

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  • patricia1
    replied
    I agree with Donna on this Dusty you are a true IC angel. And this is how I feel....

    Leslie I appreciate your opions also for the good side of the Interstim as it has helped some, but I also appreciate Dusty voice on the bad side of it. Because I have been there done that. I have had both. The interstim has always been such a sensative subject because there is no gray area with it. You either love it or hate it. But I believe that yes we have a right to voice what has happened to us with the Interstim I also believe that when we have bad results it should be shared in order to prepare someone in the event in the future something like that happens to them. And I also believe that good reports are great to and are needed to give 2 sides to every story. And I dont believe that neither one of the side needs to be reemed out for what they believe. I support both sides and I have never tried to say anything bad about either one.

    But for me personnally even having the revision done in May I am still not as impressed as when I got it the first time and waking up without the feeling of not having to go. Since getting it I have had several reprogrammings done and it is still not to the point where I want it to be. Basically right now I have given up for the time being. As long as it is not curling my toes and shocking me to the point I cant move my leg I am happy to that point. I am just sick and tired of trying to get this thing fixed right cuz it has been 20 months of fighting with docs and others tyring to fix it, so I am giving my self a vacation from it and I am not worrying about it. Its tireing tyring to get it fixed right.

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  • ICNDonna
    replied
    Dusty, I'd just like to tell you that I think you are a real hero! Instead of giving up, you are reaching out to help others.

    Sending warm hugs to a true IC angel,
    Donna

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  • dancemomof2
    replied
    I know I am one of the ones that received PM"S that you were upset with me about this. I will admit it to all., and I apologize. However, I feel as strongly the other way as you do yours. We all have our opions and deserve the right to voice them. If this issue bothers us this bad then a vacation from this area of the boards is a good thing. There is alot I would love to say, but have reached my boiling point on this issue. I told my Dr that I would not give up on the goods of this device and he agreed.
    Last edited by stasny; 07-14-2005, 04:15 AM.

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  • Dusty
    replied
    Hi Patricia and thanks ladies.
    Yes I left...I found myself in tears once again on a daily basis and getting really depressed. Constantly feeling like I had to defend myself on my interstim damage. When I realized it was to no avail and I was crying and feeling bad about myself after a long time of finally reaching a point where I had excepted what the interstim had done to me and my way of life....I had reached a point that I could live with using a cane to walk, wheelchairs for distance walking, adjusting my whole lifestyle and changing all...and was smiley and bouncy for others even though as we all are dealt difficult things in life..however when I realized I had let people get to me and I was suffering the consequences once again, I knew I had reached enough as I did not want to fall into a deep depression due to how another felt that had never had interstim problems or any damage. So not only did I stop coming here. I almost stopped everything in my life as I had no interest anymore. I felt like dog gone it I did not do this. Interstim and the surgeons did this to me. I will never take the blame for what has happened to my body and no one else should either. As it is no ones fault when this device fails, things go bad, or doctors abandon their patients. That remains true to this day with any of us with problems with interstim. None of you are to blame either and never will be. I had to take a break as it was once again causing me too much emotional pain. I am there for anyone that needs me and will answer any questions when asked from someone in trouble or wanting information when things are not right, or needing help, whatever, that has never bothered me and never will. As I understand greatly from what I have endured, knowing what others have endured. So I am here and sorry for any of you that are having problems. I hope Patricia that you are finally feeling better with the revision and life is better. I know you have been through alot also.
    Leslye I do not know if your interstim is in or out. I may of misunderstood part of your post. And ranting is ok..sometimes it is just good to unload and when you do you feel better because you got it off your chest, know people heard and understood. I wouldn't worry about it as I believe that is always helpful to people. Keeping it inside is not. Thats why this part of the boards is so important as those with damage or problems can come here and talk, cry, or whatever you need to do. Even get mad. Whatever it takes to help you through this experience in your life with interstim. Let me say also that no one is a failure. I was feeling that once again also and had not for years. The device fails, and doctors and surgeons fail their patients when they refuse to help or remove it. You as a human being are not a failure. The failure is in what was hoped would help and it didn't for whatever reason. That does not make any person a failure.
    I hope you all have a good day. It is hot here and I am going to go out and get some water on my flowers as we aren't getting rain either. I find great comfort in the flowers and they like us come in all different varieties, and need special attention too to thrive.
    Thank you,
    Dusty

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  • Leslye
    replied
    Hye Dusty, Nice to meet you, I believe I came along after you had left. I am GLAD that you are back, I too did not have Good results with the interstim(trail) that is. I am SO Glad that I had the Guts to stand up to my Uro at the time & tell him that it was NOT working. I ****** him off but, Oh well. I am having a hard time with a New uroligist right now. I was sent to one recomended by my Primary (his golf partner). I like him but he does not believe that ICers need Pain meds. We need to find out what is causing our pain & fix it! BOY, why didnt I think of that!! We can ALL be cured! I am one who has tried Diet,meds, & self medication to No avail. I do think it is Great for those who can handle their IC with all or some of these. Enough of my ranting, Welcome Back!!

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