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Hi everyone,
I have an appt. with DR. B. soon - can you please reassure me that this treatment really does work? i am currently getting to the hopeless stage - I am feeling my symtpoms intensely (despite a dignosis of 'mild' inflammation on my biopsy), they are interfering with daily life, I feel miserable and hopeless, and I can't see any way out of this. I have strange bodily sensations, not just bladder symptoms. I am agitated and not tired, despite having a nearly four month old baby. I've lost lots of weight. I can feel my body is in freefall. I can't sleep. This is not to mention the right-sidede burning sensation in my bladder. It is relentless. Did others have these symptoms before their appt.? I am thinking that I must be in a really bad way and no-one else had their symptoms as badly. That's why they wre helped but she won't be able to help me because my symptoms are so bad. Sorry if this is a ramble. At the moment, I can't see any way to get out of the pain - and even if Dr. B can help, what if I end up being one of the patients who takes five, ten, etc. years? How could I live like that?
It does work, you will be
It does work, you will be fine. Yes it does take longer for some people but it does happen for most.
Hey there, it does work! It
Hey there, it does work! It does. I felt very similar to you in terms of extra symptoms this time last year, when I was first ill. Couldn't sleep, weight plummeted, agitated, anxious, nauseous, hopeless, helpless. A year on, I'm not 100% there yet, but I'd say I am consistently 70% better. Have days where I'm totally fine. Sleep deeply and refreshingly. Eating food off list three. Still have bladder symptoms of pain and irritation on and off, but the urgency and frequency are just ... gone. Even in the last month where I've had more surface symptoms (bit more external irritation) I've felt deeper changes - 6 months ago I woke once a night every night, 3 months ago I slept through 50% of the time, in the last month it's suddenly moved to 80% of the time. Also, in the last month, when I do wake to pee, I don't feel my bladder in the morning in the same way. The sensation of having a light shining on my urethra (can't explain it better, sorry!) has passed. The residual urgency that I could faintly feel has gone too.
I've been six months in treatment. Naturally I wish it had all been plain sailing and that I was just consistently better now. It hasn't been, and I'm not, but the underlying trend is impossible to deny.
Deep breaths, don't worry. You'll be fine.
Thanks both. How did you get
Thanks both. How did you get thorugh your life for the few months after first becoming ill? I'm trying so hard to relax, deep breathe, etc. but the panic is overwhelming. I know that this panic contributes to symptoms but I can't seem to be able to get a grip on it. Any tips on how to deal with this?
It's hard to say but I guess
It's hard to say but I guess once I committed to the treatment and met Matia I just knew I would be better and that I was in good hands. You won't be sooo uncomfortable for too long, just have faith in the process and know that your body can heal. Deep breathing and long walks outside really helped me early on to relax and get rid of some of the anxiety. I have no anxiety any longer and I too sleep great now.
Thanks Christine. What were
Thanks Christine. What were your symptoms before you went in for the appt., and were they constant? Could you, for example, sleep and eat properly? Could you go about your daily chores? Were you in discomfort? How long did it take for the discomfort/pain to subside once you started the treatment?
Hi! I can hear from your
Hi! I can hear from your words that you are really freaking out! I don't blame you- this stinks! One of the best things that has helped me is to accept that this is happening, realize that I have made the best choice in seeing Matis, and that i am taking action towards wellness- the rest is out of my hands and out of my control. This is tough for me. You have already started taking positive actin towards wellness by starting the diet and making your appointment!! That is so great. The rest requires patience and frankly- faith.
She knows what she is doing and you are on the right road. What you don't know is how long and how bumpy that road will be. My road has proven to be bumpier and longer than I thought but I wasn't that severe to begin with. It seems from what I've read that moist people get a good amount of relief early on. I bet you will too. Take a deep breath and get through each day knowing you are taking action in a truly positive way. You will be ok. ((hug))
*Editing- I wrote "moist" instead of "most" and that is just funny so I am leaving it. That must be my problem! I am not moist enough!
You're right Deir. I haven't
You're right Deir. I haven't accepted the situation yet at all and am still at the 'how could this happen to me; why couldn't I have been diagnosed with asthma or diabetes' stage. I just can't get my head around this diagnosis - indeed, I never could. I have been dealing with symptoms (at first, reasonably successfully and for the past five years, very successfully with acupuncture and Chinese herbs - I was completely healed, btw - well, obviously not, but I thought so at the time) I've tried to get a grip but quite frankly, can't at the moment, I am in a permanent state of fear and am searching for ways out of it as well as out of the discomfort. Thanks for the support and the sensible words so far. I can only assume that Dr.B has seen this all before.
i totally get it. I have
i totally get it. I have only recently acceptted this and I have been sick for a year. Even now- I am not a cheereful Zen person every day but it is so much better emotionally. Today I started to get fearful because I saw an ad for a gym member ship and I thought,"WIll I ever exercise or dance again?" I am a professional choreographer and I have aleays been super physically active-one of the things I have lost- for now! SO I said to myself "You are on teh right road- you ahev taken action " and for me I added "God will take care of me" I felt much better after that little self pep talk. In your case- I think it is a great sign thatyou "got better". Our bodies are always trying to seek equiliibrium and you have been there befofre and you'll get there again. The amazing beauty of Dr B's treatment is she gets people in a forever state of balance (as long as they stick to some basic guideline) I totally believe this is possible. In the meantime- let yourself feel the fear and anger. I try to think of it almost like natureal childbirth (not sure if you've experienced that) but during labor, if I fought against the pain and struggled, it was so bad, if I melted into it and accepted it- i could do it beautifully. I try to tell myself now- een if I am having a bad day mentally it is just now it won'tbe forever.
also- I got sick right when
also- I got sick right when my period came back after having my baby. (she was 10 mos) There were little flare ups in the 2 months before that which I assume correlated with hormones gearing up Did that happen with you? So sorry you have to deal with this having such a young child.
Thanks for that Deir. I think
Thanks for that Deir. I think my big problem is that I've relapsed after five wonderful years - in fact, I've never felt healthier or more balanced in myself during those five years. ironically, just before I got pregnant, I can remember sitting on the couch and thinking 'I haven't felt my bladder for years' (!). It was amazing. I am so angry and annoyed that this whole nightmare has returned. It never has before during pregnancy. In fact, the pregnancies always made it better and less symptomatic. I think it's the annoyance, frustration and anger which ae fuellling me at the moment - none of these are healthy emotions, I know.
Hi! I just wanted to chime in...
...with some reassurance because your situation resonates with me! I was diagnosed with IC at 19 and gradually became better on my own. (I am now 30) When I became pregnant with my second daughter at 28, I felt wonderful. Then, a few months after having her... all the IC nastiness returned. Here is the good news.... tomorrow is my four month "anniversary" of working with Dr.B and I am doing much better. It has not been an easy road ... just check my posts...lol. However, my bladder feels much better... no pain, some frequency but I have spans in the day where I can go 3-4 hours without discomfort. Also... I do sleep through the night 70-80% of the time now and when I wake... it is only once to pee then I fall right back asleep.
The new mom situation is absolutely tied to the relapse in IC... the sleep deprivation, the hormones etc. Good news is that you will heal and your baby gets older and sleeps more. Work with Dr.B... she is incredible and I am not that far into treatment.
Hope this helps,
Katie
Chiming in here...
I am 7 weeks into the protocol and have never looked back nor doubted my decision. Like the ladies befoe me have all said, Dr. B is AMAZING! I try not to think anymore of the countless doctors visits and thousands of dollars I have spent in less than a year trying to get cured from IC by western medicine. However, all I can say is that even though the past 2 weeks have been a bit on the down side (which I will explain in a few), my pain level has really gone down. I can recall waking up last spring terrified and wanting to give up on life. Now, with Dr. B on my side, I know that this no longer holds true. I look forward to each call with her because she is the ONLY Doc I have ever met who really cares! She goes above and beyond my expectations. For example, a few weeks ago, I stupidly chose to eat ham. Why? Becasue I felt better so I said, why not. Well, I had a flareup. I reached out to the ladies on this site and with their emotional support PLUS Dr. B's knowledge, I was able to get through it. For me, it took time because she switched me to oil of oregano. It worked for a few days and then the flareup came again. Howver, it was not as intense as before I met Dr. B. Was I scared? Heck ya! Did I doubt Dr. B could get me through? Yes BUT since I reached out on this board with those who have experienced this, I knew I just had to go through this and try my darndest to get throough it positively. My body just didnt like the Oil of O so she told me to stop. That was this past Saturday. Since then, no more flareup. I learned my lession to stick to the diet! Another key challenge for me has been how to deal with stress and anxiety, being a Type A personality, Taurus and always having been in control. This is a huge issue for me. I am slowly and stubbornly learning how to let things slide. Its not easy, trust me. But if it means me getting better, I know that I need to fix this. What I'm trying to get at is that aside from physical pain, this is a journey on how to improve 'me'. I knew before IC that I had to, but I was too stubborn to listen to anyone. Well, IC kicked my butt and you better believe I need to listen now or live with pain. So, I'm not sayiing that each day is 'painless'. I am improving on my IBS (yay!) but I know I have a long road to go and no longer am scared nor fear waking up to the unexpected. I thank God every day for allowing me to stumble to this site in Sept. I also thank him for the courage it took for me to take this leap of faith. But it was with the support I got here that I did it. I wasnt supposed to start until December but my body couldnt take it any longer. I feared I would not make it to the end of this year. I know there will be down days and I will post here for support. Know that this is a safe harbor and not to be afraid to post when you need help. These ladies are AWESOME! They live and breath IC just like you and me. They may be ahead of the protocol or slighly behind. Whatever it be the case, I have seen woman being as honest and upfront as possible.
I think once you pass the fear part, try to think about the positives of all the woman who have posted here echoing the same sentiments about Dr. B. I know that if I send her an email at midnight due to pain, she will be answering me in the morning and advising me what to do to alleviate the pain. Nowhere else can you get this dedication from anyone. She truly is my 'guarian angel' so to speak. Do keep us posted after you have your first visit. For now, just be prepared for the visit and hopeful of what is yet to come on your journey to better health and a better way of living.
Grateful
Hello everyone,
Thank you for your words of support for Dr. B, this process and for all of us. We all have our moments of doubt and fear, especially when things are going as smoothly as we like. Although we're all separated geographically, in a sense, there's never been a group of people I've felt closer with than all of you. We're the only ones who know what each other really is going through and, while I wouldn't wish this condition on anyone, I am grateful we have each other.
In our darkest hours, let's remember that ALL of us have taken the hardest step, which is to trust Dr. Brizman, commit to her protocol and believe she can make us better. I love Tinkerbell's signature on her posts: "If we are facing in the right direction, all we have to do is keep on walking." I really believe that. We've all somehow ended up (thank God!) on this website, and made the decision to commit to getting well. The hardest part is finished. Now we just each of us have to keep walking along this path.
I wanted to take a moment to show my gratitude for your strength, humour, fortitude and support. We will all get through this. Together.
Lauren
Lauren
thank you for your heartfelt words