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how does everyone keep their relationships strong with ic? all the relationships i have seem to be falling apart due to this. my boyfriend and i of 5 years have been so happy untill this came along. whenever we talk about it, it just leads to an argument. i dont know how to make him understand what i am going through. he doesnt understand why i am going to california to get help, he questions me everyday about''why cant someone here do the same thing'', he thinks i should try other alternatives before making the trip. nothing is going to stop me from seeing matia, b/c i know in my heart this is whats best for me but i just wish i could make him understand and have his full support. same with my family, they just dont get it. i cant blame them b/c its new and unheard of by so many ppl.i just feel so alone right now, im sure all of u can relate to that feeling. if anyone has any advice for me, its always appreciated:)
You are on the right path!
I think it would be very beneficial for your boyfriend and family to spend some time looking at the ICAMA website. They should read the success stories. Matia is the only doctor out there who really understands this disease. We can't just take a pill and make it better. In todays society we are constantly told by TV and in print that a pill will make us better. You know by reading these blogs, success stories and general information that that is part of our problem. You really need them to support you and help you through your difficult times ahead. They need to trust you.
i think the problem is, is
i think the problem is, is that i havent been diagnosed with ic, b/c i choose not to go thorugh with it b/c i know something is wrong and i dont need the test. my b/f and family dont believe i really have it. so they think i all of sudden decided i had it and now im on my way to cali. ive tried to explain to them all the research and ppl ive talked to and that im not just doing this for nothing. im hoping they will understand once im on the road to recovery,i guess sometimes u just need to count on yourself and trust urself to know whats best.
The right decision
U know u have made the right decision to see Matia - she is the only person specializing in IC, that I know about anyway, who doesn't want to give u painful invasive tests then pump u full of pills (along with bad side-effects) or advocate painful instills (with the risk of infection). It makes perfect sense to see someone who has specialized in IC and other chronic bladder problems for over 10 yrs, and who has helped so many people. It doesn't matter whether you have a diagnosis of IC or not, its just a label, if someone is having chronic bladder problems she can treat them. Also, she has written her doctorate dissertation on IC - if anyone needs further proof of her knowledge and experience. If your family/bf had an illness they would want to see the best person. Tell them that many patients have travelled from Europe and Canada to see her. I decided to travel from the UK to see her becos time and again in the success stories and speaking to other UK patients I came across the same phrase: "She has given me my life back", "I've got my life back" and "She saved my life".
Suggestion I just thought of
My heart goes out to you, as I've had similar frustrating & saddening experiences surrounding friends & family just not understanding. Your post sparked my memory of the "www.icaroadtorecovery.com" site that articulately and pointedly talks about your exact issues. Check out these 2 pages: "Family Matters," and also "Traditional Methods". Would your friends/family be willing to read these? It might give them a better appreciation for things, plus since it sounds like their not trusting your experience/judgment is a core issue, this is an outside source. Just a thought - hope it can be helpful.
Diagnosing IC
I never had my IC formally diagnosed with the hydrodistension. My GP doctor recognized that I had all the symptoms. He offered to send me for the test, but I declined. He said that was a wise decision as there is a danger of perforating the bladder during that test. If you know you have the symptoms, you probably have the disease. Matia can work with you. Also, family members are the ones I have had the most problem getting to understand about the disease. They just aren't very receptive. Luckily, I have a husband who is understanding, and that has meant everything to me. You know what you have to deal with, so do what you think is best for yourself no matter what others think. IC can seem like a lonely disease, but there are others who can offer you their support.
I have had the same reaction
I have had the same reaction to torey with one particular person questioning why I am flying all the way to LA for treatment and not looking closer to home. This person is my mother and she is my only problem, thank god. When I was first diagnosed I tried to follow an IC diet and eliminate all the foods that I was sensitive or had a reaction to. The trouble with my IC is that I react to alot of foods even foods on Matia's List 1. I was not however following Matia's diet as I had not discovered her at this point. To cut a long story short I lost a dramatic amount of weight. My mother then started saying to people that I had an eating disorder not IC. She even to this day phones me and says why can't you find someone in Australia instead of spending all this money. I think for me I do not let this get to me personally as I have been diagnosed by a urologist and I have his report to prove it, (In your face mum). However I believe I may have had more problems with my husband and friends not believing me if I did not have the proper diagnoses. I have also had this horrible friend for nearly two years and I have tried so many alternative therapies with promises from these people to heal me. I have spent so much money and at times become alot worse, mentally, physically and financially. I made a promise to myself that Matia would be my last option and for the last 12 months I have not seen anyone, or purchased so called miracle supplements but have saved hard to make this trip possible, in order to have someone treat me that knows what they are doing and what this is that we have. Torey I think you would be a fool if you did not go through with the trip. Your boyfriend needs to get a reality check and be more supportive. You will need to not have these emotional issues in your life at the point you are starting your journey to better health or it may slow your healing down. Sometimes our partners also need a break from constantly hearing how shit we feel, maybe if you give the IC talk a break for a couple of days it may help things a little. I never speak to my mum about it, and my husbands mother is even flying in from NZ to look after my children even though my mother lives 5 minutes down the road from me. If they cant be supportive eliminate them as much as you can. It will make for a more relaxed and peaceful life.