Post Exchange with Someone I Think is Irritating.

Preface: I have interstitial cystitis, which is a chronic inflammation of the bladder. Unfortunately, for men it also is closely associated with prostatitis, chronic pelvic pain syndrome, pelvic floor dysfunction syndrome and a couple of other labels, which mean little because there is no cure. True IC is seen mainly in women, although about 10% of sufferers are men. It's a brutal disease and after dealing with it for 17 months, I've become someowhat of an expert on how to manage it. I like to write and often post on support sites for people suffering with this and other similar diseases. Although I am far from cured, I have learned through trial and error what works for me and periodically make suggestions that I hope might help others. Symptoms for people vary wildly as do the things people do to manage their flares. My purpose is just to throw out a few things for peoples consumption. If something workds, great, and if it does not, well, something else probably will in the person's quest for the right cocktail. I posted something recently that really seemed to upset somebody. I'm not sure why, but I found out later that my post was deleted. Of course that seriously pissed me off because nobody likes to get censored when they speak their truth. After some terse e-mail exchanges I was able to re-post what I had originally written. The italicized paragraphs are from my original post. The regular black fonts are the response I received and the font in red is my rebuttal response. Luciano, I read this post the day you posted it and it has been on my mind since...I have been juggling how to respond and even whether to respond or not. Honestly Briza, I found your post very negative. And honestly, you probably were better off not responding because you obviously skimmed through my post or chose to see it in a way that was not intended. I am very happy that you have a very optimistic outlook on life and your illness. Actually, really, the majority of us do! I know I do That is, once we find appropriate treatment, figure out the diet, find a good team of drs, and get our symptoms under control. I would think that you were not so optimistic in the beginning. Who is? Probably not many when they find out they have a condition that has no known cause and no known cure. I'm sorry, but what is your point? The majority of people who suffer with this are anxiety prone individuals who think too much and are prone to catastrophic thinking. Exactly how do you know this? Can you provide any scientifc studies to back this up? No Briza, I have no scientific evidence, but based on the number of people who are on anti-depressants and anti-anxiety medication, the number of people I know whose symptoms started at very stressful times in their lives and who have a tendency of obsessing about their feelings, leads me to believe this. I have also read many articles on IC and CPPS and how people with nervous/anxious/worrisome personalities are predisposed to these conditions. Based on the above I am comfortable stating that the majority of people who have this disease feed into into by virtue of their personality traits. I also believe that just about everyone can benefit from PT as most people have a tight pelvic floor due to not only the anxiety inherent in their overall personality, but the fact that they clench their pelvic floor due to the pain and stress of daily living. However, not all PT's are the same. You have to have one that specializes in pelvic floor dysfunction. From everything I have read and researched it seems that men especially have issues with their pelvic floor, particualrly when they have pain in their testies,penis, perinium, and other localized area pain. Yes, many of us deal with pelvic floor issues and yes PT may be appropriate for some. But "just about everyone" who has IC is female, and PT for women is drastically different than PT for men. I agree, not all PTs are the same and not all are trained in PFD PT...I will leave out the details, but the PT for PFD in women can cause multiple other issues. Yes, some women respond well to PT, but like I said, I am leaving out the details of the unfortunate side effects that many women w/ IC and related conditions can get as a result of PT. I'm sorry, but I posted this in the men's forum so I'm not sure what bothers you about my statement. In addition, I mentioned many body parts that I believe wouldn't be part of your anatomy. At Dr. Wise's clinic at Stanford there are both men and women that have done his particular protocol and although PT may not help everyone, there are plenty of people of either gender who might benefit from this. Nobody knows until they actually take the time to have the treatment done. Based on the outcome would determine how effective PT would actually be. The spiritual side of a person also has to be addressed. I have met more truly spiritual people on this board than I ever have in person. That said, some people are not spiritual at all, in the religious sense or otherwise. And that should not be considered a flaw in their character nor does it affect their ability to heal or their likelihood to become ill. Forcing spirtuality in any form down anyone's throat does no one any good. To each his own regarding belief systems. That is way too personal for someone to say that you gotta be spiritual otherwise you will become sick, stay sick, never get better. Wow! I must have really pushed a button on this one. I don't remember saying anywhere that you have to be spiritual or you will stay sick and never get better. You are reading what you want to read and perceiving what you want to perceive. All of us as human beings are multi-faceted and when we are weak in one area, it will affect us in other areas as well. This has nothing to do with religion and everything to do with the spiritual side of a person. Meditation, getting quiet and centered, being in the moment is what spirituality is. Spirituality can be yoga, prayer, deep breathing, anything that centers a person. When a person is off balance, filled with negative voices and emotions this can and will affect a person in other areas of their life. Our spiritual - emotional - physical - mental parts of ourselves all work in tandem. The Chinese have practiced this type of mind/body connection for centuries. If you don't think that spirituality is an important aspect of a person's treatment, all I can tell you is that you are doing a disservice to yourself and others who read your statement. I'm sorry, but on this subject you are in the minority. The last thing I want to point out is that you are your own doctor. Too many people depend on their doctor as if they were their personal savior. They should be your ally and support, not the one making decisions for you. Most of us actually probably know more than our physician when it comes to this disease. Yes, we all need to be advocates in our own healthcare, and if we are too ill to do so then hopefully we have a family member or close friend who will take that place. But we are NOT doctors. I understand that and I never alluded to that. What I stated is that I got better when I started working on myself and learning to depend on myself. The purpose in making my statement is to empower the hundreds of people who feel like nobody cares, nobody understands and nobody can help them. It's to demonstrate to those people that success in treatment ultimately is theirs and theirs alone. A doctor cannot heal you. They can only offer suggestions (what they know) and sign scripts. We make the decision on what we are and are not comfortable with. For most of us, we have had to advocate for ourselves and the more we read and educate ourselves, the more we learn, the better we are going to feel because we have given ourself some semblance of control. If you have a doctor who actually listens to you and is willing to try new things and actually spends more than six minutes listening, than I salute you. I agree, many of us have made it a full time job on educating ourselves about IC. We can take what we have learned and share it with our dr(s) and if we are not comfortable with what our drs want to do or treat us with, then we can discuss those concerns with our dr or seek other professional medical help. But we are NOT doctors. I, for one, truly value my drs opinions, advice, etc., but I know when to say no to something I am not comfortable with. The last uro I saw stated, "You know more about this disease that I do. At this point I really don't know what you have. It might be prostititis, IC or a bladder spasm. Just get back on the Elavil and I'll see you in six weeks for another cystoscopy." (I already had one and nothing was found.) The uro before that stated, "I can't help you anymore" The one before that stated, "I think you should see a psychiatrist. You come here too much." There are dozens, if not hundreds of people of both sexes that live through this every day. That's why I stated that your doctor is not your savior. Although there are some exceptions, the vast majority of doctors only know what they were trained to know. From the standpoint of IC they know Elmiron, Elavil, and instills; at least that has been my experience. It wasn't until I took control of my treatment that I started making real progress. At this point I am 90% better than I was a year ago. I have had three days or so this month when I was actually completely normal. I am glad that you are feeling much better now. But as I hope you know, each and every case of IC and its related conditions is different and responds to different meds and therapies. Just like the diet, each med may or may not help or agree with an IC patient. I had excellent success with Elavil and just a few other meds and treatments taken only as needed in addition to diet, and I have been in remission, no meds needed, since Feb. I think that is awesome and I'm happy for you. If you take at look at ICN members signatures where they list meds and treatments they are using, you willl see that MANY are not taking Elmiron and MANY are not taking Elavil. They are taking things that have been prescribed to them to help with their individual symptoms, whether it be Elavil, Elmiron or any other med. None of us like taking meds, but hopefully the ones we ARE taking are the ones that help, and if they don't help we talk to our drs about discontinuing them or trying something else. I also believe, like you, that the body and bladder can heal itself, depending on the patient. But to say that we all need to do this and this and this and this and not depend on drs is very presumptuous. I'm sorry, like I said, I have thought about your post since you first posted, and after much thinking about it this is how I choose to respond. I am not trying to be divisive or argumentative, but I found your post to be somewhat too all-encompassing, considering the differences in symptoms and such in the patients who post here. I feel your post was divisive and argumentative. It might help if you re-read what I wrote instead of reading into it what you think I meant. As a courtesty, you should have e-mailed me personally. Yep, healthy diet and relaxation is important, not only for IC patients but for EVERYONE. Spirtuality...much too personal to say that someone's conditions are what they are because of lack of spirtuality. This is two times you have brought this up. Maybe you should meditate some on why this statement makes you so uncomfortable. The literature speaks for itself, chronic disease comes from an inbalance in the body and spirituality is part of it. Supplements? Yes, some people need them, but not all. Any dr will tell you that is best to get vitamins and minerals from the foods we eat. I also saw in another more recent thread of yours that you are now taking dex and trying to determine yourself what dose is best for you. I took it once just to see what it would do. I haven't taken it again. And yes I take drugs when I absolutely have to. I'm a teacher and I have to be able to function at work. If a Vic/Valium/Klonopin help then so be it. However, I don't make a habit of rummaging in the medicine cabinet every time I'm hurting. For someone who is preaching the all natural route, I find it odd that you are trying a med that is so untested in regards to its efficacy for IC, and especially given the meth family that med is in. With a med of that type I would think it best that you let your dr be the dr, and since you were Rxd dex, apparently you still have some need for drs. I'm not comfortable with your tone Briza. (Here I wanted to put you bitch, but didn't) I am not preaching. I took the time to write a post that I felt would be beneficial for the majority of people here. If you read all the threads on this subject you would find that it is helping dozens of people and unfortunately many others who would benefit from it can't get it because their doctor is still stuck on Elmiron/Elavil. To address your second point, of course I see doctors. Who else is going to sign off on my scripts? That's the only reason I see them unless I have an emergency and don't have any choice. Did your symptoms change that drastically from the time you made this post to the time you started the dex? I am confused. Few to no drs know anything about dex being used as an IC med, as it is usually Rxd by a psychiatrist for ADD or ADHD. The reason they don't is that they don't read and research cutting edge treatments. If they did, we probably would be making more headway into this disease and others like it. Best wishes and take care...hoping you have many relaxing spiritual pain free days in your sauna while going the all natural route while self-medicating regarding your dose of just a little non-natural meth thrown in. Bri Bri, I think you have a lot of issues you should explore. I had dozens of people PM me with positive feedback, but yours was the only negative one. You seem to curdle like spoiled milk where spiritualism is involved. Maybe you should meditate on this and find our what about spirtual matters upsets you so much. I also don't appreciate your sarcasm. Unlike many women on the boards, the men here don't have the luxury of staying home and taking care of outselves in the comfort of our own homes. We have to go to work and provide for our families. While you are at home with a heating pad watching Oprah, I'm in a classroom with a bunch of emotionally disturbed students, with my bladder on fire and this non-stop feeling of needing to go the bathroom, even after I just went. And it's not even lunch time yet. Meditate on that for a while (I also wanted to add here, you stupid bitch, but I didn't) lol.