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I'm not sure I should even be posting here anymore seeing as I'm no longer a patient of the Brizman's (reasons for leaving were about 10% personal and 90% financial) but I'm at a complete loss and as most of you surely know, it's near-impossible to find proper support when you're suffering from IC.
Reading how much some people have suffered/are suffering from very severe cases of IC, I want to slap myself in the face for being such a weak idiot. My case of IC is very mild in terms of pain/urgency and I've been suffering from it for little under a year. At worst, I was taking vicodin for 6/10 pain that was caused by my diet because my pain tolerance is literally 0. I have never missed a day of work due to pain. Once I altered my diet, I hardly felt any pain at all. Of course, I could never stick to my safe diet for more than 4-5 days. It is 100% my own fault that I have this disease. I knew after TWO VISITS to a regular health practitioner that I had IC, and even though everyone claims they don't know what causes it, I knew a combination of my lifelong, horrible eating habits combined with chronic stress and abuse of prescription meds had finally caught up with me
The stress of trying to pay for this treatment on top of affording rent every month was so overwhelming that I feel I barely improved while I was there. Once I left treament, I actually felt about 60% BETTER, which made me figure that a lot of this was stress-related to start with. It was practically miraculous. Of course, I broadened my diet way, way too much, smoked a bit too much weed and within a month, I was worse off than when I entered treatment. I feel like I'm back at square one.
As of now, my bladder is SO sensitive. Yes, the pain/urgency isn't bad (frequency is almost non-existent), but I feel like EVERYTHING makes me flare even the tiniest bit, especially being exposed to any type of chemical. It wasn't this bad when I entered treatment.
My plan as of now is to go back to list 1 of the diet and try and stick that out for two months to see if I improve at all. I started this exactly one week ago and so far, it seems to be working. My bladder hasn't improved at all in terms of sensitivity to chemicals (I flare slightly after being exposed to people in my workplace wearing too much perfume, for crying out loud!), but I'm at least not in any serious discomfort. Pain is almost non-existent, while urgency/burning is 1/10 at best, 5/10 at worst. I don't really have any other symptoms of IC that are non-bladder related other than mild straining with bowel movements and very, very mild issues with vaginal discharge.
Basically what I'm wondering, is it even worth it for me to try and recover from this on my own using Matia's regimen? Has anyone attempted this, and what were the results? Could just sticking to the diet and introducing foods back in at a gradual pace, paying close attention to how my body reacts, and trying to keep my stress level under control actually work, or am I playing with fire? I don't feel it's safe to experiment too much with probiotics and other supplements without professional guidance, so maybe I just shouldn't take them anymore? I was taking half a capsule of golden seal, rhodiola and superdophilus when I left treatment and still do, but I've had to purchase different brands of golden seal and rhodiola as I don't remember what brands Boaz had me on. I also take a capsule of fish oil daily as it's been a miracle for the chronic brain fog and anxiety I've suffered with for years.
I really, really struggle to trust doctors (both western and natropaths) and I don't want to seek help for this elsewhere. I do believe that this protocol is my best hope for recovering from IC, but there is no way whatsoever that I can afford to treat with the Brizmans again anytime soon.
Like I said, I don't know if I should be asking this type of advice or even be posting here at all, and I'm so sorry to ramble and waste anybody's time. I know everyone here has struggled so much more than I have with this disease, and that's what I'm afraid is going to happen to me. I'm desperately afraid and very neurotic that my IC is just going to worsen no matter what I do. Even though my pain isn't awful, at least 50% of my days revolve around worrying about my bladder and everything that goes into my body. I still don't think I've even really accepted that this has become my life at age 23. Is everyone with IC just completely screwed if they can't treat with the Brizmans? I feel hopeless to stop this disease from progressing, even if I do buckle down and actually stick to the diet this time.
Any advice/words of comfort would be hugely appreciated :(
Your body is strong and
Your body is strong and resilent and you are young. If you can make the effort to care for yourself by eating well, not smoking pot or drinking and other lifestyle changes, you will probably do well. I don't think IC prgresses too much if you treat yourself well. You already have a lot of the tools and info to do that. I would not try to self treat as far as herbs/probiotics though. Too risky. Why not just focus on small self care steps? Rather than feeling screwed, think of the good things you can add into your life. Everythingn you can do to make the healthy side of the scale outweigh the unhealthy side will help you. Maybe things will change at some point and you will be able to afford treatment. In the meantime, just take care of yourself!
Thank you deir for your kind
Thank you deir for your kind words, they made me feel much better :) The funny thing about the pot is that I had no idea it would make me worse when I started. I saw Matia's blog post about marijuana and realized it was probably the main reason that I had such a huge set-back. Regardless, I had a much better day today with almost no pain or discomfort. I'm having random break-outs in areas that I never see any zits, and am very hopeful it's already a sign of some mild die-off. Same thing happened about a week into treatment. The hardest thing about all of this has always been to keep from panicking over it too much!
Hello,
Hello,
Please reach out - even if you can't afford the treatment. You aren't wasting my time, nor do I imagine that anyone feels that way. I think you know that if you can't receive care, that following the protocol of diet, without cheating, gives you your best chance of living pain free.
I know first hand the pot can cause huge flares. In desperation, I used to try and use it for anxiety and insomnia - it quickly hurt like hell. As far as taking herbs and pro-biotics on your own - that is such a personal decision. I simply can't find a way to be comfortable in giving you any advice on this subject; largely because it would only be based on what my personal response to the treatment has been. I know very well that this treatment isn't a one size fits all sort of thing - it would make it so much simpler if it were.
I do believe that you're immensely helping yourself by following the diet - for me, before I went into treatment, it hugely helped.
Hang in there - and continue to touch base.
Hugs
Thank you so much :) Yeah,
Thank you so much :) Yeah, pot was a surprise to me. I almost immediatley felt 2/10 burning in my bladder. Like, five minutes after taking one hit. Kind of silly when you think about it! I know what you mean about the diet being the thing that helped the most in treatment. My IC pain was ALWAYS related to what I was eating. I think stress factors in when it comes to how well my bladder can handle what passes through it. It seems like it's so much more difficult to deal with problematic foods if I'm eating them after a 3 day period of being a complete basketcase.
I know eating right and not caving on trigger foods like sugar, chocolate and coffee is my best chance at at least stabilizing my bladder. Thanks again, and I'll definitely continue to touch base :)
FYI - Dr. M used to use
FYI - Dr. M used to use Eclectic Choice Rhodiola - for some reason it is no longer available and she's using a brand called Paradise. As for golden seal, I've always used the Vitamin Shoppe brand, which for me, was acceptable to her.
I do hope you do not self
I do hope you do not self treat in the sense of using herbs and probiotics because they could take you in the wrong direction. There is nothing wrong with the diet, per se, but you would not want to be on list 1 forever. The lower lists are meant to stabilize you so you can go through treatment with ICAMA. There are a lot of nutrients on lists 3 and 4 that ultimately the body would really want if you were more balanced. I would heed all of her warnings about things that you put on your body (even natural face creams), and treatments that could go against healing that might move the lymph too quickly (massage or sauna for example). If you do go into remission, watch carefully for things like disrupted sleep or changes in good bowel habits because this could signal a relapse. Best wishes.
If we don't excel at health, the only other option is disease.
As of now, I still take
As of now, I still take superdophilus, golden seal and fish oil as they have produced nothing but positive benefits for my overall health. I don't plan on adding anything in anytime soon. I don't use any face creams and all the products I use with the exception of my shampoo and conditioner (it's natural, sodium lauryl sufate-free, doesn't bother me...sorry but the bomasense stuff does NOTHING beneficial for my hair). I'm very sensitive to chemicals, so I use almost nothing on my body unless I know it's on the ICAMA safe list.
The funny thing about the food lists is that I can eat almost everything on them without issue with the exception of coffee, strong tea and citrus fruits. Nuts, grains, tomatoes and earl grey I can do in moderate amounts, but if I have too much at one time or over a period of days, it starts to bother me. Pretty much all the stuff in the red from the standard IC diet Western medicine preaches I can only do in very little amounts or else I flare. I have never had any problem with veggies, no issues with dairy, and only about half of the fruits I can't eat. If the diet really is only meant to stabilize me, could I still eat things like black beans and avocado? Foods that have never caused me any problems? Honestly, I only cut those out and have been primarily sticking to list one for the past 10 or so days to be safe, but if I don't have to be THIS safe, I'd rather expand my diet a little!
But yeah, you're right that the best I can really do for myself right now is eat right to try and stabilize. Even with just the diet and minimal probiotics, I already seem to be getting mild symptoms of what might be die-off (acne, vulvodynia and burning out of nowhere, heartburn). Might be too idealistic to assume that would happen after just 10 days, but I have no other explanation for why it would be happening otherwise.
I would caution you against
I would caution you against taking goldeseal regularly for "overall health". It is a natural antibacterial. It is used very strategically in treatment. I have only taken it a few times and I asked her about it and she said I was nice and balanced now (in a treatment sense) and so she did NOT want me taking goldenseal. So since you are young (assuming you took some antibiotics in the past?) and you may have excess of the wrong bacteria in your gut, then goldeseal might feel good for now. But I would really caution you against taking it without the help of a health practitioner. Taking supplements of any kind is really self-treating. Everything has an impact on the microbes in your gut. Goldenseal is NOT something to take ongoing.
If we don't excel at health, the only other option is disease.
Hmmm, interesting! I've been
Hmmm, interesting! I've been taking half a capsule 3 times a day for about 4 months, which I was told to do when I was in treatment. Sounds like everyone's body really is different, considering you were only told to take it a few times. I really do not know much about these probiotics other than whats on the bottle. To be honest, I'm not that interested in alternative medicine, and am only learning what I can because I have a condition that can't be treated from a western medical perspective. I try to just understand as much of the "big picture" as I can (the specifics just bore me to tears). Clearly, I should have been a bit more inquisitive about the probiotics when I was in treatment, and will definitely strive to do that if I have to go back.
Hello,
Hello,
I originally read your post and moved on, not wanting to comment for fear of offending. Here's the thing, I understand not being able to afford something - but your last comment on being more inquisitive about specifics if you have to go back into treatment, kind of made me wonder a bit. In your own words, you have a condition that can't be treated from a western medical perspective. I know for a fact that natural paths, trying an alternative, also makes things worse rather than better. It's my gut feeling that you landed in a place that some people would kill to know about, a place where the very specifics that bore you to tears, have been painstakingly and probably desperately studied to save her own life. So, unless you have that kind of drive, talent, and thirst to find your own answers, my guess is that self-treatment may not have the results, without some sort of divine intervention, that you are so desperately hoping for. However, if you're like me, the only way that you're going to actually be willing to fork out the money, live with the restrictions, trust in a very foreign medical concept and have faith in the person who is taking care of you in such a manner, is that you've run out of other options. Because if there was some sort of damned pill that I could just take, that wouldn't have horrifying side effects, I'd be the first in line.
Thanks for your response. I'm
Thanks for your response. I'm happy you posted, and you didn't offend me :)
Honestly, it's not just that these specifics bores me to tears, it's also that I'm somewhat incapable of understanding why it works that way. I tend to be bored/irritated by things I don't understand. Maybe a little bit immature, but hey, I'm not perfect.
If there's one thing I AM concerned about, it's finding a way out of this. Like I mentioned earlier, I knew very early on that this was most likely IC, and not something else, so I never took any antibiotics or sought the opinions of western medical professionals. I did take vicodin for about two months, as at the time, I had given up on living that way without some kind of way to manage my pain, but I also didn't realize that soy was the main aggravation of my symptoms at that time (that's what you get for working in a vegan restaurant, I guess). I've spent a lot of time scouring the internet to see what kind of options I had to deal with this, and most are very disheartening, so eventually I only searched for positive outcomes of having IC. Although there is very little out there, it did lead me to this website. I didn't exactly "land" here by accident, but trust me, I'm not ignoring the fact that this is by far my best chance to heal.
If you read my response to Claire, you'll see that I owned up to having other issues during treatment that weren't related to my finances, so there are some other things that for the time being are keeping me from returning. I haven't completely given up hope, but this is a lot to deal with, as most of you surely know. For the time being, I'm following the diet and am trying my hardest not to slip up. It's paid off so far, as my bladder discomfort seems to decrease daily. I know I'm by no means out of the woods and the diet probably won't do that alone, but I'd like to at least be able to enjoy my days, maybe spending only a little bit of my time worrying about my bladder, rather than all of it :)
I have had your post rattling
I have had your post rattling around in my brain for the past week and wanted to share my thoughts with you. I truly apologize in advance if my post here sounds bossy or like too tough love, but I have spent so many days wishing that someone could have helped direct me through the wild world of IC as I stumbled through on my own in my early twenties. So I hope you can use my experience as perhaps inspriation or as a guide.
My IC started when I was in high school, and by some miracle went into remission after about 9 months. It came back with a vengeance when I was 21 and about a year later I managed to get it back under control through a variety of methods and a lot of trial and error. I think I was able to do this in large part because I was young. I did a strict diet somewhat like what Matia recommends during this time, but I had no idea how to stay in balance aside from recognizing a few things that flared me. No one was providing any kind of long term support or advice on systemic issues and balance the way the Brizmans do.
For 10 years, I was OK, aside from pain after sex sometimes and symptoms from drinking. I was 31 and was thinking about marrying my boyfriend, having children, establishing my art career and my teaching career, feeling like the world was open to me. Then I got hit with IC again. And the world stopped. It's been 5 years now. I spent 2 of them working with practitioners who were compassionate but had no idea what they were doing. I am now crawling out of the hole with the amazing help of Matia, but it is taking much longer now that I am older. My income has dropped considerably because of my illness. I moved back to live near my family. I have put the idea of having children aside. IC changed everything.
I wish every day that I had found Matia when I was younger and that she could have guided me to balance when my IC was not as entrenched in my system. She has mentioned numerous times that a big part of why my healing is slow is because I've had IC for so long.
Even if your symptoms are manageable, your body is struggling. I know treatment is expensive, but it is cheaper if you don't have to be in treatment for so long. It sounds like you're taking a lot of supplements anyway, so the only additional expense is the appointments. If you only have 1 appointment a month, that comes out to less than $2000 a year. It's not that much money in the grand scheme of things if you could get yourself in balance now. One year in treatment is a lot cheaper than 5 years! It's a lot cheaper than cutting your income in half when you're in your thirties because you're too sick to work full time.
I don't believe the Brizmans are the ONLY solution to healing IC. However, I do believe that you're going to have a really hard time doing this on your own in a sustainable way. I'm sure you can find a way to reduce your symptoms, but I feel like the Brizmans are in this with you for the long haul and will help you acheive real balance. You've managed to find practitioners who know how to help you. $150 a month seems like a lot when you're just starting out in life, but I promise that your health is truly priceless. There are ways to find the money you'd need to get treatment. You could do a crowd-source funding campaign online to raise $2000 to sustain treatment for a year. You could talk with friends or family about hosting a fundraising event. There are many people near where I live who have done this type of thing and raised over six figures to help with medical treatments. You could wait tables one night a week and earn enough extra cash to cover the payments. You could try talking to the Brizmans about some kind of payment plan. I just think that if this treatment is what you want to do, money should not be holding you back. This is your health. There is nothing more important. However, if the issue is your fear and lack of trust of medical practitioners, that's a different story and something that may be a bigger thing to look at. I totally understand your fears, but I would be so sad if it held you back from getting the help you need.
Again, I really hope I don't sound too bossy. I just wish when I was 23 that someone could have said to me what I'm telling you. I regret every day that I lacked that knowledge at the time. We are here to support you, whatever you choose to do and you're not alone in this. I know that just following the diet and health recommendations will help considerably. I just don't want you to close a door to health before really looking at the bigger picture.
Amazing info Claire!!!!
Amazing info Claire!!!!
I had IC symptoms in my early 20's and thought they were UTI's treating them every time with ABX. I now believe this is why I am so messed up. If I had know then what I now know, I could have probably avoided a lot of grief. Of cours, Dr B wasn't even treating yet then so I don't feel regret. I did what I could then. My "flares" were so rare and mild and only lasted the years I was on the Pill it is only in retrospect that I see that it was probbaly IC and not UTI.
Good advice from Denise and Claire.
Thanks for your support, and
Thanks for your support, and I didn't think you sounded too bossy at all :) I really do want to make it clear that it's not as though I've given up on seeking treatment entirely. The stress of how I'm supposed to deal with all of this is too much to handle a lot of the time, and for my particular case of IC, stress is a HUGE contributer to how likely I am to experience an uncomfortable flare, so aside from sticking to the diet, I'm trying to avoid that as much as possible. I know deep down that I probably can't heal entirely on my own, but I'd like to give it a shot and at least be able to say I can manage my symptoms until I can afford some kind of treatment. My financial situation is tough, but I'm saving all that I can. I'm also not taking a lot of supplements at the moment. Only fish oil as needed, as it stands. I've taken some of the others' advice on refraining from self-healing through supplements, and I thank them for their advice as well. Not to mention, it'll save me more money!
Something else I think is worth mentioning is that I somewhat exaggerated how much of my issues during treatment were caused by financial problems alone. Yes, that was the biggest problem, but there were other significant factors that were very, very upsetting for me and make me extremely reluctant to return, despite fully believing that the protocol is my best shot for healing. I know the Brizmans supposedly don't read the forum, but I don't feel comfortable going into specific detail, and I hope you all can respect that. I have an exceedingly difficult time trusting doctors due to some fairly traumatic experiences in my past, and some things that took place during my treatment with Bomamed did nothing but increase that paranoia. It would probably be worth it for me to go back if I knew Matia was going to be my doctor this time around, although to my knowledge, she still isn't accepting new patients and wasn't when I first went in. That's my second biggest concern right now, next to how I'm going to be able to afford it.
About the payment plan idea. It sounds like a good one, but when I was there, I just felt there was no indication whatsoever they would accept that, so I didn't ask. Maybe I should have been more assertive, but I'm just really terrible at communicating my needs to people (other than what's relevant to the service their providing me) because I kind of assume they don't care. I'm not entirely sure where this paranoia comes from, but I know it's a problem I need to address at some point.
I've thought about a crowd fund type of thing, but that would mean admitting to everyone that I'm sick. Only my family, boyfriend and two of my close friends know I have this condition and understand how potentially serious it is. They don't really "get" it, but comprehend that it's altered my lifestyle significantly. I don't think I'd be comfortable being that open about it to people I don't know. I also think that I'm not that deserving of charity. There are people out there who are actually dying and they need that support much more than I do.
For the record, your story has really made an impact on me, and although I'm incredibly sorry to hear that you've been through so much due to this awful condition, I'm very thankful that you shared it with me. It's definitely given me a another push I needed in the right direction.
I ignored a lot of early
I ignored a lot of early signs of imbalance in my early 20s or just did the bare minimum of healing so I could get on with things. Had I heeded them I might now be where I am now.
I know of a woman personally in my town that treated her IC with a candida diet, but never treated the root cause of IC. So she went into remission for about 15 years. Then IC came crashing back and she had to close her business and ended up in the hospital and is probably now going down a western road of pain medications and other horrors.
I don't have a mind for Chinese Medicine either. But if you are forced to live in a foreign country, you better get over it and learn the language. At least enough to have the patience to get through treatment. I have been exposed to western medicine practice for twice as long as you, and trust me, there are no answers there for most auto-immune conditions. Sorry the information is boring your mind, but LOL your body will thank you in time.
If you have some VV symptoms and flare from foods, your gut is broken. Simple as that. Your small intestine is not working right. Will the diet fix this? No idea. Could your bladder symtpoms go into complete remission? Maybe. But that would not mean your gut was healed and this lays you open to all kinds of auto-immune related issues. And then what about if you ever want to have children? The cascade of hormones that comes with pregnancy can bring a return of IC symptoms. What if you dont want children but a combination of events occurs and brings back your IC?
If you are unhappy with your treatment at ICAMA, I think you owe it to yourself, and to Dr. Brizman to be straight with him and express your concerns. This is true in ANY relationship. No one is a mind reader. If you felt mistreated or misunderstood, or taken advantage of then you need to speak up. If you already addressed your concerns with B. Brizman and you don't feel heard, then contact a patient or two of his directly and discuss your concerns. Often times it is just a misunderstanding. Practitioners are people that are practicing. They are not perfect and most have no ill will, certainly not Boaz.
No one can make you mature faster than you already are. We all have our own paths. I was 23 too. I think you are letting a lot of things cloud your judgement and you place a lot of priorities on what others think of you. But I am 47 and it took me years to figure out that this was not serving me in any way.
No one can convince you to go this path except yourself. IC is not debilitating you now, but you have a chance in the next few years to set your health path straight so that this will never, ever come back. That is a gift. So even if you don't treat this year, keep this path in mind. It may be the only one to help you lead a normal life in the future. And doubtful that Dr. M Brizman will take any new patients for a long time, if ever. She has to find a way to teach other people to do this and I think is focusing her efforts in that direction.
If we don't excel at health, the only other option is disease.
I am reading all these
I am reading all these wonderful, honest posts on this thread and wishing my 20 year old self had read them.....sort of like the letters we wish we could write to our young selves;) Sometimes I feel frustrated I did not find Dr M 13 years ago, but then I breathe....smile and thank goodness I found the treatment at all and embrace we all are where we are supposed to be ..... If you believe in that sort of thing.... Lol;)
Katie- LOL
Katie- LOL
I just wrote a huge response
I just wrote a huge response to this and my computer crashed. Lovely. First of all, thanks for taking the time to write me back, and I apologize for taking so long to respond myself. I'm constantly grappling with whether or not my use of this site is beneficial, as it tends to make me neurotic. I actually promised myself I'd just let this thread die, but evidently I couldn't manage that.
The following is probably going to sound pretty negative, so if you're feeling down or trying to remain optimistic, I advise you not to read any further.
"IC is not debilitating you now, but you have a chance in the next few years to set your health path straight so that this will never, ever come back" - I'm not sure I agree with this. Didn't Matia say herself that she doesn't cure IC? Furthermore, didn't she recently do a blog post talking about how patients occasionally come back to her because they've fallen out of balance again and their IC has come back? I understand that ICAMA offers the highest success rate for stabilizing IC patients, but there still, unfortunately, is no ultimate cure for the condition. I was told during treatment that even after I healed, I should still stay away from alcohol and sugar almost entirely for the rest of my life. Seems like no matter what you do, there is always a chance that you will get IC again if you've had it once before. I'm not joking when I say I regularly consider suicide as my only real option for "curing" this problem. The stress of worrying about the condition worsening (or coming back, in case it goes into remission), for me, is almost as bad as the condition itself.
Here's another rambling piece that nobody is obligated to read, but I'm going to get it all out anyway because I've had a terrible day and I feel I have little to lose at this point.
I've been chronically unwell since I was about 3 years old (started with chronic UTIs that eventually turned into a full blown kidney infection, surprise, surprise...), but because my problems weren't literally killing me, I never recieved any serious attention from doctors or psychiatrists. I've dealt with severe acne, chronic and copious vaginal discharge, unexplained depression and anxiety since I was about 10, and PMDD. I actually dropped out of college and stopped functioning altogether for about six months back in 2011 after I started experiencing dissociative symptoms that were so severe I was actually convinced I didn't exist. I lived on an alient planet and it was like I wasn't inhabiting my body. It traumatized me in ways I can't even describe. I was in and out of psych wards, screaming and crying all day long, in a constant state of anxiety that would often erupt into full blown panic attacks, abusing benzos, drinking, self-harming, doing just about anything possible to escape how I was feeling. All of this pretty quickly earned me the Borderline Personality Disorder label, and I managed to convince absolutely nobody that the majority of my extreme actions were a result of feeling like I LITERALLY DID NOT EXIST ON THIS PLANET. Somewhat like IC symptoms, it's almost impossible to explain to someone how this feels if that person has never experienced it themselves (and most people apparently have not). The BPD label is a stigmatizing one, and I spent most of 2012 in various therapy treatments, having the vast majority of my concerns dismissed out of general principle that I'm "unstable and manipulative by nature," for a disorder I didn't have. I have since learned that I probably had Depersonalization Disorder. No idea why none of my psychiatrists or therapist never considered this might be a more appropriate diagnosis. I guess there's no other explanation they will accept for a woman who self harms and has an unstable family history except that she has Borderline Personality Disorder. Believe it or not, my having IC is actually mild compared to this entire experience.
By some miracle, my dissociative symptoms have almost entirely disappeared. I'm convinced that either changing my diet or taking supplements to treat IC somehow fixed it for the time being, but because even less is understood about DPD than IC, I have little reason to believe it won't come back some day. So, at this point, I have two serious conditions that no matter what happens, there is always a chance I'll go through all the same horrors again. I haven't figured out a way to appropriately deal with this reality.
I've come to understand that although I'm not anywhere near incapacitated by my IC, there are dozens of reasons I have to believe that it will not be even remotely easy for me to get it under control, if that's even possible. My mother raised me vegetarian for the first 7 years of my life. I've always had an awful diet high in sugar, processed, spices, highly acidic and fast foods. I never ate fruit or veggies. I was on Prozac and other various SSRIs on and off from ages 10-19. I was on tetracycline from ages 16-18. I did three rounds of accutane between ages 16-18. I was on benzos on and off between ages 20-22, and had a tendency to abuse them. I worked at a pool from ages 17-22 and was exposed to chlorine and various chemicals on a near-regular basis. I have been chronically stressed out, anxious and depressed since my early teens. All this combined I'm sure would make me a very difficult case, and I know it's too much to hope for that I would be done with ICAMA treatment within the standard they claim is a year.
I have been disregarded by, stigmatized, and just generally misunderstood by almost every professional I have encountered since I was ten years old. One of my earliest memories is being in the hospital during my first bladder crisis, screaming for my mom while two doctors roughly held me down and a third gave me two shots simultaneously into both my legs. I have no trust in doctors, even those who probably have the best of intentions. I hardly know how to recognize the good intentions in others anymore. I am damaged and exhausted beyond belief by the endless madness that is my body and it's constant, unexplainable, incurable problems. I think it's so incredible that there are people who have been doing this treatment for upwards of three years, when I can hardly handle sticking to the diet for more than a week before indulging in something I shouldn't. I don't think it's possible for me to be involved in something for so long, and I am in no way capable of affording such a long term treatment.
I have been out of balance in one way or another for most of my life. I simply don't believe there is any chance this is all completely reversible with enough effort. I really feel that my best shot is to try to manage my symptoms in the safest way possible, which for now appears to be sticking to the diet. Can I handle doing that forever? Absolutely not, which is why I'm stuck. The general consensus around here seems to be that nobody can heal through diet alone. None of you are doctors, but you've been a part of this for longer than I have, so I guess listening to you might be smarter than attempting to convince myself that my IC may go into remission after sticking to the diet for long enough.
I don't trust doctors, and I don't trust myself. I wonder if this point if it's really that I'm looking for a reason to go back into treatment for IC, or a reason to continue living. Half the time, I wonder what I'm doing on this forum at all. I don't know if I'm looking for advice, support or if it's just helpful to be around people who somewhat understand what I'm going through. I don't know how to stay positive like you all do (please don't tell me it just "comes with age") and I don't fit in here. I'm sorry for wasting anybody's time, or bringing anyone down with this thread.
Do much here and I feel for
Do much here and I feel for you. Ony have time to quick reply. Hey- you might go into remission with diet alone. Also- I don't think anythign is truly 'cured" it is a different way of thinkng about health. Everyone has their particular weaknesses and itf you treat yourself better, you have a better chance of keeping yourself balanced. it comes down to this for me, accepting that I have this particualr body weakness which means I won't be out drinking like my sisters and eating cake. (I also will look alot better) For some peole lilfe is too short not to eat ice cream. I think that is an equally valid position. I don't fall in that category and I never will. I have a friend who has had vulvodinia for 40 years. She falls into the previous category. She has made a decent life with the disease. As for me, I am trying to get well...for now. maybe I will give up and say- " I will just have a glass of wine and deal" They are both valid choices and only you can decide
sorry for typos. First line
sorry for typos. First line should say "SO much here"
ps- nobody really ever feels
ps- nobody really ever feels like they "fit in" perfectly. I don't either. it helps me to try to just keep the focus on myself
As far as the- it can be more neurosis causing. Take what you like and leave the rest and hang in there.
ok- I can't type- "as far as
ok- I can't type- "as far as this forum"
Also- I mean fit in on this
Also- I mean fit in on this forum- I am not saying that everyone has had your degree of issues in everyday life. (((HUG)))
Dear Spiral Rice
Dear Spiral Rice
I don't want to go down the path of explaining my own bleak story from the beginning - I don't have the energy for it nor do I want to bore or scare everyone with all the details again. The only reason that I bring it up - not to make it all about me, is to let you know that you are talking to someone who has suffered with anxiety and ocd to the point where I struggle on a minute to minute basis. I have walked the halls of a mental ward, I have wanted to die, I have spent hours in OCD rituals, I am so often scared out of my flipping mind that I don't live in the world with the people around me - I GET IT. If you're bored and want to search Denise and read through my craziness, you will find that you're not alone in feeling alone. At the moment I feel like I've finally found something that I can grab onto and pull myself out of this mental hell hole - it's a councerlor that's trained in what is called Eternal Family Therapy. If you search it, you may think it's hokey beyond belief. The only thing that I can tell you, is that it's the 2nd thing that has felt like it could help me save my own life - the first was Matia. HOWEVER, like the Brizmans, it is not a quick fix, a simple pill, with guarantees of forever. What it is - is hope. I choose to grab onto it, run, fall, stumble, and drag myself to somewhere better.
There are some things that I've found that, other than drugs, are a quicker fix to try and get a grip - One of them is EPT, or tapping - you can find out how to do it on line. The other is a CD called Brain Sync - it can be downloaded. It's supposed to help calm your brain waves - a few of us have used it. For awhile, I lived and slept it.
I am happy that you reached out again. Please continue to do so.
CORRECTION! Internal Family
CORRECTION! Internal Family Therapy. Not sure what sort of mental slip that was.... : )
There are loads of people
There are loads of people that have been treated here with similar health history's to your own. Also the mental symptoms you describe are mentioned now in countless reaseach studies about GI disorders. GI disorders cause mental sx. The gut is the second brain and is a primary hormone regulator. Absolutely nothing of what your wrote suprises me at all now that I know what I know about health. Look around you or on TV for the medication commercails. Those with Ulcerative Colitis, Multiple Sclerosis, Lupus, Asthma, Arthritis, skin conditions, the auto-immune issues go on and on, all are from poor nutritional status, family history of particular weakness in certain organs, exposure to abx, NSAIDS, steroids, birth control etc... None of us are alone here.
Just because you have that history, does not mean you cant get well in body and mind. Brizmans don't talk about cure as in the west, because they use a whole different system of looking at health and wellness. In Chinese Medicine there is not the belief that there is a "cure". One is always making choices to walk a better path. That must be why you chose to not still take benzos? (At least it sounds like you don't now?) Every day, everthing we choose can lead toward balance or imbalance. I am not afraid of this anymore. Yes it is true that constitutionally we are always going to me more delicate in a certain way. But when I read the testimonials of people getting their lives back and not having digestive or cognative issues or sub-fertility, or skin conditions, all of the hard work is deeply, profoundly healing for the body. Everyone is at risk for chronic illness. I choose to lower my risks as much as possible.
Here is something you wrote: "I understand that ICAMA offers the highest success rate for stabilizing IC patients, but there still, unfortunately, is no ultimate cure for the condition."
This is true for almost ANY chronic health condition. Also I would add, that after 2 or 3 years of giving your body nutritionally what it needs to change every cell, and rebalancing gut flora, and iliminating sytemic fungal candida, and restoring healthy mucosal tissue throughout the body, I would take HUGE issue with your choice of the word "stable". Stable is a very tenuous place. Western drugs can "stabilize" or treat symptoms. Rebalancing the body is entirely different. To live pain free, to have a GI system that functions and does not react to foods, to be able to travel and eat most any foods, to not ever think about bladder, to be healthy in the mind and live a productive life, to go through pregnancy, perimenopause and menopause without dramatic symptoms, to not have to take ANY WESTERN DRUGS and suffer their profound side effects to feel this way. Well, that sounds like more that being stable. There is a difference between being low or no symtoms or seemingly "stable" and wellness.
"I was told during treatment that even after I healed, I should still stay away from alcohol and sugar almost entirely for the rest of my life. Seems like no matter what you do, there is always a chance that you will get IC again if you've had it once before."
But this is true for ANYONE in life. Everyone in the world is at risk for chronic health conditions through their daily choices. You don't have to decide today to never drink again or eat sugar or whatever. The further you get into learning about true wellness, the more you realize that EVERYONE has health weaknesses that are unique to them, and that anyone can help their body heal from inflammation and a broken gut. You can read about this all over the internet. IC is no different. We just have a unique set of circumstances that lead to a high level of inflammation and so the untangling of this needs to be slow and steady so as not to shock the body. These practitioners understand IC very well so it is an ideal
place to help your body heal. You have a great chance to rebalance, because A. the body is amazing and B. you are YOUNG. I hope that my lifestyle changes are putting me at a greatly reduced risk of cancer and chronic illness later in life. I could send you countless stories of people that were sick from a young age and healed themselves through nutrition and supplements and care.
By the way, when I first met Dr. Brizman, she told me EVERYONE thinks THEY will be THE one that does not get well. She does not know why this is, but she observes it all the time.
Best of luck to you!
If we don't excel at health, the only other option is disease.
And this idea that we have to
And this idea that we have to live outside the norm and it is a huge lifestyle inconvenience. Well this always deserves more discussion, research and self-reflection. The introduction of white sugar into our food has become a huge health issue that reaches far beyond the scope of this treatment program. Many, many people are coming to realize that eating sugar daily is putting them at risk for heart disease, cancer, diabetes and auto-immune conditions. Many, many people are starting to shun processed sugar and demand that it be taken out of commercial food supply. This is just the beginning. It is not just for IC. I don't keep sugar in the house, and no one should. IT should be consumed in extreme moderation, regardless of your health history. This is also true for alchohol. No one gets a free ride here. Everyone pays the price. We are not uique or special. there are deep, deep, cultural and historic and now biochemical reasons why most of our country is sugar and alcohol dependent. Anyone that wants health should examine their lifestyle and behavior choices if they want to live their best life.
If we don't excel at health, the only other option is disease.
Wish there was a darn "like"
Wish there was a darn "like" button. VERY well said, Mimi;)
ditto <3 Love this, mimi.
ditto <3 Love this, mimi.
Thank you Mimi for writing
Thank you Mimi for writing all of this. You are so right!
Love love love what you wrote
Love love love what you wrote!!!! I wish I was so eloquent but you explained it perfectly!!!! Your awesome.