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I've been a patient of Matia's for many many years now. There was a time that I was feeling better, but for the last several years I have been doing very bad again. I follow her protocol religiously, and she is so very patient with me, but I don't seem to be getting any better. Has anyone else out there been through this for as long as me? I'm getting very discouraged.
Many Years
Hi Peggy,
I don't know if I will be of much help to you with my story, but I wanted to reach out anyway.
Although I am a very new patient of Dr. Brizman's, I have had IC for 11 years now. Mine was pretty severe at its onset, but once I started making some changes to my life it improved dramatically. It has waxed and waned over the years depending on what is going on in my life.... example: pregnancy, stress, a new job etc. IC always is there though.. .I am so ready to be rid of this disease. So even though I have not been in treatment long, I understand how frustrating it is day after day when it seems that nothing logical affects this wretched disease.
Do you have only IC or other ailments as well? How many years have you been with Dr. B? I have heard it can take as many as 5 for some to see dramatic improvement:)
I am sending good thoughts your way,
Katie
Many years with IC and long time with Matia
I've had IC for it seems a zillion years. I can't remember when I was originally diagnosed, but I think I was in my early 30s and I'm now 54. I've been with Matia for about 8 years or so. I don't really remember. I had many complications including Asthma back then, and I have chronic back and neck problems too. Matia has been a blessing. I don't think I would be alive today without her. My Asthma is gone and I don't get sick like I used to anymore, but my IC is still here with a vengeance. I got better for a couple of years, much better, but then I had a relapse and can't seem to get out of it. Who knows why! It's such a complicated disease. All I know is that I would never go back to the regular doctors. All they did was torture me and give me drugs that made me sicker.
I just find it hard to live like this sometimes.
mendezpeggy
I am sorry to hear about your suffering... and that you are still feeling poorly.
You say that you got better for a few years, then relapsed. I think that should give you and other some hope. Like Matia posted, this disease for most can be healed in a shorter time then years and years... But for some it can not be. I don't have all the answers of course, but I want you to know that I understand how you feel. I have had IC for over ten years before finding Matia. I have been in treatment for over a year and a half. Lots of little improvements, but still suffer with lots of frequency at times, and bladder pain. I still have die off all the time, though not as severe as in the beginning of treatment. Some days get SO tiring. I have yet to even remember what a "normal" bladder is. But I look at all the little things that have improved, and it is like, wow! This treatment DOES work. I have no doubts Matia is really helping us, and knows what she is doing.
What you said about Matia being a blessing is so true... this IS a wonderful treatment. We have to be there for each other, and not compare ourselves to each other, because that will only add to our hardship and sometimes confusion of, "why me?"
Hang in there... i will keep you in my thoughts and prayers.
Thanks
Thanks for your thoughts and prayers. I regret posting as I didn't mean to worry anyone. I know I'm a particulary hard case and I've had IC for so long and it is complicated by so many other things.
Matia is a gift from God!!! That's all I can say. If I didn't believe in her treatment, I would have given up long ago. She is always there for me and is the only one who has ever helped me in so many ways.
mendezpeggy
Please do not beat yourself up for one minute for posting. OK? People need to live in reality. Matia has not hidden the fact from anyone that some people take much longer then a year or two. This site is not only for people who are just starting out, but for those who are still plugging along.
You come here for support if you want to, because the people who you would really want supporting you are people who will look past their own fears to encourage you. Isn't that a big part of being a friend, or encouraging someone? Being there for them, even if you do not have the answers or it might make you feel uncomfortable. You encourage and try to be there for them anyway. It is not up to you how people respond to the truth of your having a really difficult time. I hope and pray that your IC will get better and better with time.
Take care
Just wondering..... Are you
Just wondering..... Are you going thru menopause? Some women with IC have problems with the drop in estrogen.
I have had IC for half of my life and I know what it is like having years of not feeling good. There were many days I would get very discouraged and feel that nothing was working.
We are all very blessed to have Matia helping us navigate this disease.
My heart goes out to you
My heart goes out to you Peggy. As someone else has already said this site is for all of us for you too not just us new to treatment.
I must admit that it has freaked me to read your post I would be telling a lie if I said otherwise but it would not be fair for you to not have somewhere to go to reach out for help.
I so hope that Matia will figure it out for you and you will return to remission as you enjoyed before. That is the positive that she works so tirelessly to try and figure things out and help us.
My thoughts are with you.
Thanks for your support and probably
Thanks for all your support. And yes, most likely I'm going through menopause. I'm still having periods, but they are few and far between and I used to be very very regular. I'm having symptoms like urethral burning that I really didn't have before, so maybe it is the drop in estrogen. Matia has never given up on me and I know that she won't. I don't know how she does it. She is a saint.
Thanks again everyone and please keep me in your prayers.
A place for everyone to go
Hi Peggy - thank you for reaching out. After doing this for over a year - not as long as you - I sometimes feel like I don't quite fit into this site. It probably also has to do with the fact that along with IC, I've had breast cancer three times in the last 13 years. (all looking good in that dept.) I often feel like an outcast as I know that people are really afraid of a lot of things while going through treatment - paranoi and fear often raise their ugly heads during treatment. HOWEVER, that too lessons as your body balances out. Then, of course, there is the fact that I don't think that most patients are over 50 (I'm soon to be 52) Add that all together, it's easy to start to feel a little "different". The thing is, I think that if you were to delve into each person, you would find that they probably, for whatever reason, don't feel like they quite fit. When someone, like yourself, reaches out with honesty and vulnerability, it gives the rest of us a chance to step out of ourselves, and try to be bigger than the walls that we've let climb around us.
Take care - I can be found at greatworker1@hotmail.com. (it's the numeral 1 not an l)