ICAMA Wants To Hear From You!

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This last week and  a half has been a little preoccupied. Many things going on. And
I will do more posts later today. But, I wanted to start the week and month out with an
important question that only each of you can answer! I would like those of you who use
the forum chat room to place comments on this post regarding your experiences with it. Has it helped? IF so, how? Do my blogs help? How has this site provided each of you with
support? And, how is that support different from ay support you have received elsewhere?

THANKS TO ALL OF YOU WHO RESPONDED SO KINDLY!

Thanks!
Dr.B 

Comments

emmarenee's picture
emmarenee

Has this site helped me? More than words can express! The same is true for your blogs. This site (especially in the beginning) has been a life line for me. It has gotten me through my darkest hours. It has given me encouragement and hope. I have made friends here. Friends that know what I'm going through. We help each other. I visit this site several times a day. It really is like an extended family to me. Your blogs are always informative and helpful. You, this site and the people who share of themselves here have made this experience life changing for me. It has changed for the better. Not just for me but for my family. My kids will live a healthier life. This site has done that. Thank you so much! Tammy

drbrizman's picture
drbrizman

Thank you for the kind words! I am so glad it has helped in so many ways!

Kriste's picture
Kriste

I am really missing reading your words of wisdom and inspiration Matia.

drbrizman's picture
drbrizman

I was just thinking how much i needed to get back to it! I miss it too!! Back today and to myself hopefully!:)

Kriste's picture
Kriste

Yay!! thanks for the new post Matia.   It was great as usual.

catalina's picture
catalina

I have been helped so much by this site and your blogs!  I read the site everyday and  have learned so much.  When I have a bad day I read the success stories and they really help me.  Offen I too have experienced some of the same symptons others have had and written about on the user forums.  It makes me feel much better to find that I am not unique or alone.  I have found so much support from this site even though I have never shared until now.  I would like to thank you Matia for all the hard work  that you do  for each of us.  This site and your blog are very, very important.
Carol

Kriste's picture
Kriste

This site is like a lifeline for me.  It gets me through my days and especially when I am having some difficulties I either read the success stories or post a question on the forum.  I find the blogs and also other's posts to be very informative.  I have looked at other sites and chat rooms and have always come away feeling scared for my future.  I don't see the same positiveness as I do at this site.  This site gives me hope like no other.  I appreciate what you have provided for us so much it is hard to put into words.  I also appreciate all the people that have reached out to me on this site.  

IC-Hope's picture
IC-Hope

... Thank goodness for this site!  Having IC is difficult enough, but when compounded by the stringent treatment protocol and lack of understanding/support from many of our friends/family, one can feel so very ALONE.   So for me, the biggest gifts of your site are (1) I don't feel so alone going through all this and (2) I can connect with others who have felt my pain and walked in my shoes, who "get it" like no one else really can.  The other parts of the site are quite helpful too -- I reread the success stories when I start to get doubtful or negative (or just have a bad day), I consult the recipe lists, I use the search to look up answers to my questions before bugging you :-)
Matia, your blogs provide so much helpful info and needed encouragement.  For a lot of us, this time of our lives is the worst and most trying... IC brought everything to a screeching halt and this is NOT how we envisioned things being!!... just coming to terms with that is so very difficult.  That you take the time to reach out to us with such sincere empathy and encouragement (not to mention are so available & responsive) is beyond words. 

Honeybee's picture
Honeybee

I am so grateful for this board and Bomamed and Matia. The positive impact of this board and of Matia's care is immeasuable. I was feeling really hopeless before finding this group and like I was going to just have to live with pain for the rest of my life. My whole perception of what is possible for my health is so different. I now know that vibrant health for my whole system is possible. I feel incredibly lucky that I found ICAMA- the success stories gave me hope and a new understanding of IC and wellness and being able to have the support that I need sometimes so quickly and immediate from everyone here has been so wonderful. Sometimes I would be in total panic or feeling terrible and there was always someone who responded with an expereince or encouragement. It is truly a blessing and I thank all of you who read and contribute The quality of my life would be so low without the support, education and healing from this community and the guidance back to wellness from Matia is more than worth all the hard work in diet and beyond. Matia- your blogs are very helpful and encourage us to take responsibility for our health and our health education. Mind body spirit- this site supports me on all levels. In the past I would visit other IC support boards and aside from the sweet and compassionate support I saw members showing each other on an emotional level the dismal realization that people were not improving and some appearing to sink deeper into the condition was terrifying. People were suffering terribly without hope and on many many drugs. I stopped visiting those boards when I started with Matia and look forward to the day I write my own success story. Thanks!Mary

suzdancer's picture
suzdancer

I am so thankful for this site, and all of you who participate.  Where else can we go in the middle of the night when we are hurting and confused?  There is so much hope and good council given here.  It is very encouraging to read the success stories, read the current struggles and see that there is so much improvement.
I am thankful for a place to be able to talk about this disease with others who have been there..and are getting better.  Yes, there are set backs, but we learn how to deal with them.  This site for me has given hope, encouragement and a quality exchange of information.
Matia, i love your blogs. They are so thoughtful and helpful.  For many of us this is a time of finding totally new ideas on health.  I love it!!!  There is so much to learn and share.
Thank you all.  One year ago i had no hope...now there is.
susan
 

jeanne's picture
jeanne

I have been a patient of Matia's for almost six years and I know how important it is to have a place of hope, especially in the beginning of treatment. I know that for myself, other websites were totally depressing and I decided that they were not that helpful. I just waited for my appointments with Matia reassuring me and read the success stories over and over. How fantastic it is to have this site !!!!!! Now I am one of those success stories!!  I still learn so much from the blog and everyone sharing. The ICAMA website is a very important support source, and I thank Matia for her amazing dedication to all of us.Jeanne 

MR203's picture
MR203

This site is like NO OTHER IC site anywhere! This site is about real hope and people who actually are better (or getting better). The world of IC before I met Matia was simply awful and depressing. Someone else said it here - after I found Matia I stopped looking at all other IC sites online. I couldn't allow the pain and disappointment of other people's stories to bring me down any further than I was! I needed to read about how people got better and how they did it. And the Success Stories got me through so many terrible times. I knew that so many people wouldn't LIE about getting better. Not with IC - if you have it and you have it bad, you would NOT be taking the time to write a testimonial about how much better you feel unless it was 100% true! So even though I am 95% better, I still come to this site almost everyday to learn more and to help others who might be struggling. Without this site and Matia, I'd probably be dead. If I can help someone get through a dark time or give them hope, then I feel like I am working on repaying Matia and God and the Universe for giving me another chance at a happy and healthy life.

toreyg's picture
toreyg

finding this site is truely a miracle. the day after i found this site i was scheduled to have scope done to look at my bladder.somthing led me to this site and that is when i decided not to go through any invasive procedure and follow this road of healing. 3 months ago i had thought my life was truely over. being 21 there was no way i could live the rest of my life like this. ive only been in treatment a month and i am seeing improvements that help me keep positive and have  hope for a future. everyone on this site has been so helpful and kind. this disease is soo lonely and i feel like we're all kind of a family that we can reach out too. ive made some great friends on this site. the success stories get me through all the hard times. i truley thank god everyday for leading me to this road to recovery with matia:)

Lexy's picture
Lexy

Although I this may sound like a broken record I want to repeat how amazing Matia is and her website. She is truly a god send always available when things may have shifted in your treatment and always positive about your recovery. I have improved incredibly since I began seeing Matia and will hope to only continue on this path. I know that Matia is the only person who can help me get back to being completely healthy and her website serves as additional support in this matter. 

Angela's picture
Angela

It is a great way for everyone to share and help eachother.  Now that I feel better I still come to this site.  I still learn so much here.  And I want to give back to others.  There is hope here.  IC makes one so lonely and hopeless, I sure remember the days when I was so ill. Hope is very important.  Thank you Dr Matia for making this all possible.I sure am forever grateful for everything you have done and do.Angela        

hermione1's picture
hermione1

have been enormously helpful to me.  While I have only participated minimally in the blogs, I read your posts, Matia, almost every day.  Since your treatment has turned my life around, this site is a place I can go to stay in touch with you in between our phone calls and search any topics relevant to what is going on in my life that you may have discussed in the past.  As someone else commented, this site has often felt like a lifeline.Thank you and please continue with this forum that you have created. 

janejones's picture
janejones

The ICAMA website is a great resource and a place of immense comfort which I visit every day. IC is a very lonely illness and the forum is a chance to 'meet' others with the same illness and make contact, it connects people. The attitude on the ICAMA forum is very positive, it is a place of hope and encouragement.  A community has grown where patients encourage and support each other, swap advice and experience. I have learnt some great stuff here. I have visited other sites for ICers but have found them depressing.I find the blogs interesting and educational – I have learnt a lot!  Thanks Matia for sharing your insights and experience so generously, I am really grateful that you take the time to write. I hope u will continue.