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I just need to vent - I'm sure many of you can relate to similar situations. I am from a small town in Indiana - we are a close-knit community. I have a friend who has organized a fundraiser to help with the costs of treatment...I am very grateful! Since we are doing a fundraiser, I had to tell my story, and we made a flyer. Since putting my IC information out there, I've gotten a lot of messages regarding this. There have been other people I know reach out to tell me that they also have IC - they then continue to tell me what they do to treat theirs and that this is what I need to do...each of them having a different protocol. I am not knocking anyone's protocol, if it works for them. I feel what people fail to realize is that: a. the reason we got IC is probably a combination of things, most not being the same combination. b. We all have different symptoms (probably some of the same, but not all of them). c. What works for one person, is not guaranteed to work for another (exactly why with this protocol, everyone is not on the same herbs and timeline...because we are ALL different!). I feel like these people that have reached out are acting as if I haven't researched a GAZILLION hours, and that I haven't tried EVERYTHING under the sun to get this under control! I know they mean well, but they are going about it in the worst way possible. First, you don't approach someone by saying that you also have IC and that this is what you need to do. You can reach out and ask them what their symptoms are or what their IC story is...then let them know things you've tried and what's worked for you. Don't act to me like I don't know what this disease consists of or how to treat it. I know, I'm probably being a little touchy and on edge about this...I've just had several people comment on this, and it's been very frustrating. I know I put myself out there by posting my story for the fundraiser, so I guess I have to expect things like this. I actually had one girl tell me that her IC is hormone related, so they keep hers under control with the depo birth control shot...WAIT, WHAT?!...doesn't she realize that she's just making things worse by taking birth control! She tried telling me that I need to take birth control, and it may help....yikes, I got off birth control after several years to get away from that poison! I just kindly explained to her that I wasn't interested in that option, but I was glad it was working for her. I can't preach to everyone about what they should and shouldn't do when it comes to treatment...then I'm just like them and forcing on them what I think is the best treatment option. Sorry, I just needed to get that off my chest :)
My childrens pediatrician was
My childrens pediatrician was a sweet elderly gentleman who once told me "let it go in one ear and out of the other." Ha! Still good advice. Sadly, you and I both know the poor soul on birth control will be searching for help one day on this and she will probably try to find you. I have a young girl with IC that I encouraged to study the Icama doctors. Her parents instead took her to the Mayo clinic. She is in some treatment plan where she has to work out so many hours a day and not allowed to even act like she is in pain. Inhumane!!!! Sad!!!
Patty,
Patty,
That is terrible...that poor girl! Let her parents have IC for one day, and I bet they wouldn't send her back there!
ahhh- i totally get it! That
ahhh- i totally get it! That is why I tell very very few people about this. Even still i get people telling me their opinion. One of my friends recently asked me if I had ever thought of doing her "nutritional cleansing" program- ie: Isagenix. I know the feeling you have about "Don't they know I have thought through these things?" Even my best friend suggested I do hydrodistention. Unfortunately, that friendship hasn't quite recovered from that!!!
I have learned so much about humility through having IC and I have learned to be grateful that I do not feel the need to push my agenda on anyone. If someone asks me and seems interested, I will tell them what I am doing. Other than that, I am pretty much quiet about the IC. ALso, I have a real abbreviated way of handling "suggestions" now. I just smile and say something like, "Huh, interesting" Or just "Hmm" Someone told me one time to say "I'll think about it" whenever you wanted to pretty much stop a conversation. it's all in the delivery.
I totally get your vent. i have been there too. I've gotten better at dealing with it, but it bugs me too! I find that "preaching to the choir" as in on this forum or with a 2 close friends who totally get it also helps. We need support to do something this counterculture.
There have even been patients on this forum who felt the need to give detailed and pushy advice. it amazes me every time. Didn't the fact that they developed a serious illness helpthem realize that you couldn't possibly know everything? haha!
Oh and another thing- i
Oh and another thing- i realized really early on that I dod not like to talk to other IC patients unless they were doing this treatment. I need to keep my focus.Either poeple have mild IC and they don't underastnad what I am talking about or they are so bad that they are miserable with no hope. . Only on here have I found likeminded people who have hope.
I have 3 very close friends..
I have 3 very close friends....2 of which who are very understanding and love to ask questions and hear all about my treatment plans, and another who tends to not talk to me as much anymore and asked me if IC was like having cancer...ugh!....did you not read that email I sent regarding what IC is and the treatment I plan to do?! I am very lucky in the fact that in the last couple of years I have helped my friends and family to start living healthier lifestyles...so when I talk to them about what's going on and the treatment plan, they get it. They know I won't put anything toxic or unnatural in or on my body, and don't give me grief about it anymore. However, you still get the other people with IC or other health conditions that still think they know it all or their way is right. I honestly felt like when I went to my uro or gyno, I knew so much more about the body and how it worked than they did...including about IC. That's such a scary thought! Thats why I quit getting on the IC Network...what a joke! Those poor souls who go on there just bring each other down! They all have different opinions and are doing different treatment plans, and none of them understand the importance of getting to the root cause or the importance of nutrition. I had to get off of that site because all it did was make me scared and depressed!
I was one of the lucky ones who had extremely mild IC for many years. I only had frequency, and not even crazy frequency, just more than the normal person. I ate and drank whatever I wanted. Then, after getting off birth control (I was on it for 13 years), I started getting slowly worse with frequency, started getting frequent yeast infections, and then one day woke up with urgency that hasn't gone away. I have since gotten my hormone levels tested, and have low estrogen, low progesterone, and elevated dheas levels. I know that the birth control was probably the bandaid for this. I'm hoping once I start treatment, I can get my hormones leveled back out. I just turned 30, and got married recently....we are wanting to start a family. I know this is the right place for me. Like you said, it's full of like minded people who are doing the same treatment. I'm ready to see Boaz and get started....I'm ready to be on the road to recovery! I'm glad to have all of you for support!