Forums:
Today I had an appointment with Dr B. It is never long enough. She still doesn't understand why I am so bad after all this time. I have none of the complicating factors she usually sees. My IC has not improved and sometimes I think I am worse than when I first saw her. The only thing she said was that because of the neck pain (that started AFTER I started treatment) that shows that there could be some internal energetic blockage that is holding me back. This is a nightmare to me and I am having a tough time figuring out how to think about this. I go to al anon and pray and try to do everything I can humanly possible to "let go" She says no EFT or other therapy. I feel helpless. I do not regularly meditate because I HAVE 3 LITTLE KIDS and it is impossible. I really do everything else I can to take care of myself the best i can. What do i do? Keep faith that she will unlock this at some point? Has anyone else had any experience with her telling them they had an energy blockage of some sort?
ps- I hate Louise Haye and anything else like that
also I wanted to add: I hate
also I wanted to add: I hate to post because I am afraid I will scare people. I want you all to know that I live a relatively normal (ic)life. I work part time as a singer, I do things with my kids etc. i have never had constant extreme pain. I also believe that Dr B is the best and that this type of healing is the only way to go and that so many people who started with me have improved drastically. I don't want new patients to assume they will be like me.
Dear Deir:
Dear Deir:
Thank you for writing in. I am not the poster child for this program- the last few months I have gotten into deep doodoo that is not necessary to go into here but maybe you have to search deep in your soul and ask what to do about the neck and the whole ball of wax. With utmost respect, I have huge problems understanding how EFT could be problematic. Also, I was told not to do PT and when things finally got bad enough she said OK and now it looks like PT is the last chance to avoid a double knee replacement so I had to say " my mobility has to come first."
My take away from all of this is that my knees were different from the standard muscle and joint affliction that many ICers develop in treatment. I had a long standing mechanical structural irritation and when someone finally read my MRI right, they could show me how degraded the cartilage was and why I was having so much trouble with walking. So usually it walks like a duck and is a duck but maybe not always.
We have never met face to face or even on the phone but I have always adored you and your posts.
Wish I had a better answer for you, but you are in my thoughts.
Let us know what you decide. Bonnie
Hi Deir,
Hi Deir,
I'm really sorry to hear that you are having issues with your neck. can you explain exactly what it is? I have been dealing with extreme neck stiffness, TMJ pain and I feel its because that is where I carry my stress. So I understand what you mean because I know how difficult and draining that pain is. That has subsided dramatically over the past 6-7 weeks as she completely changed my protocol. I was also having ALOT of constant migraines on top of it. Has she changed her protocol? I was on ALOT of herbs and now I'm down to just 1 bif, 1 mega, 2 RP whereas in the past I was taking approx 10 herbs. The main reason for the change is due to the skin issue on my neck, Lichen Simplex. I want to encourage you not to give up. I am right there with you in terms of slowly improving but try to maintain the positive energy. Perhaps for the neck pain she can let you see a chiro? what type of neck pain, specifically, are you experiencing? For temporrary neck pain, I use a hot press around my neck. Just a thought. Keeping you in my thoughts and prayers. BIG HUG TO YOU. Hang in there.
Adriane
Oh and I agree w/ Deir, not
Oh and I agree w/ Deir, not trying to scare anyone whatsoever. I started this protocol 1 1/2 years ago and I dont want to also scare anyone new because my bladder has improved GREATLY. I can now commute in the AM for 1 1/2 hours in the to work as well as my bowels. These other issues are areas that I believe will just take longer to get through (ie, my skin issues). But Dr B in my opinion is the best and only doctor that I trust.
sorry i need to clarify. my
sorry i need to clarify. my neck, while annoying is really not a major issue for me. It is the fact that the ic hasn't improved. When we were talking yesterday she said that the only thig she could think is that the soreness of my neck makes her feel that that indicates that there is an energy blackage. So I am not really concerned about my neck- it is just a bad sign that I might have this deep issue. That is what is scaring me. Last night I had a true meltdown. I had such a bad flare I could not fall asleep and I went completely panciky for a bit. My husband is so upset as well.
thanks for postin las tnight ladies.
Hi Dier,
Hi Dier,
I've been with Dr. B only a couple months longer than you have, so I don't know if I'm an "old-timer" or not. But it is a long, slow journey and I have seen from your posts how much you've changed during this process and have become this amazing voice on this forum for those struggling. I'm so sorry you're still having a rough time on a regular basis. You always say you're not struggling as much as others with your IC, but clearly if progress isn't being made, maybe you are struggling more than you realize. I imagine that it is so challenging with 3 little ones to not be giving your energy away to them all the time, but if there is any way for you to do less (work-wise, care-giving-wise, etc.), it might open up some energy for your body to put toward healing.
I feel like this IC journey is a huge lesson in loss and letting go again and again and again. When I think I have let go of everything I can, I realize there is so much more in terms of expectations and assumptions that I once again have to challenge. I'm not that good at it, and I get so upset that it seems so unfair, but I feel like once I release them, I'm able to relax a lot more, which, again, frees up energy to go where it's most useful.
My other major thought in reading what you've written is that I have healed from IC twice in the past. So I know there are other methods to get better besides this one. I believe strongly in Dr. B's approach, and I feel confident that her framework and methods will lead me to be able to take care of myself and hopefully not have to go through another IC nightmare in my life. However, it is not the only path to recovery. Clearly, she knows so much, but I also think you know yourself best. That is in no way saying that you should discount or discontinue what you're doing with Dr. B, but there is no harm in searching out something else that may support your healing. And I agree that osteopathy is awesome. I have had so much help from it, both in this time healing from IC (Dr. B knows I see my D.O. from time to time) and the 2nd time I got better it was a HUGE part of my recovery.
My old D.O. once said to me, very non-chalantly, "when you're ready, you'll heal." I think it's the truth. For some reason, we have to be ready and then the world comes flooding back in. I wish I could give you the answer for how to create those conditions! My thoughts are with you, and, as you would say (((((((hugs)))))))).
xo
Claire
Hi Deir
Hi Deir
i have been a patient for more than 4 years now!!! i would like to talk to you!!! i am not sure how to send you an Email but mine is vero_solano@yahoo.com
Be strong , this will pass!
Hi Deir, I've been in treatment for two years and like you I didn't have the constant pain that most people do, I had pain maybe 2-3 times and it was horrific and I'm so pleased I didn't get it more, my main symptoms when starting were frequency (every 10-15 minutes all day) and irritation and pressure in my bladder. (mine started after trauma, I lifted something too heavy and felt my bladder tear).
I too get the awful neck pain sometimes for months and months and then it will ease and then it comes back, when I get it it seems to come on more in the afternoons but at times it was all day long and I couldn't do anything, it's miserable, I know! At the moment it's much milder than it has been, Matia has said before that she feels something's getting stuck.
I know I am not in the pain you are in with your neck right now, but last year and over xmas especially when my bladder felt worse than ever and I couldn't understand why, I had bouts of feeling like you are now, and I'm so sorry you feel like you're not improving at all. Are there any improvements that you can list and compare to the beginning before you met Matia to show you are making some progress even if it is small? Is your appetite good, is your hair growing fast?
In the beginning Matia thought it would take me a year to get better and it's been double that and I am still getting there and it can feel disheartening especially on the bad days, but I have to and try to remember the improvements. This year I have started to improve and the things I have been doing differently are meditating for 5 minutes a day and really working on being positive mentally and making my self rest, for me I think the resting has been very important to my improvement, just lying down and doing nothing- not even watching tv or reading- just doing nothing so my body can work on detoxing. I always felt guilty for resting these past two years but the exhaustion earlier this year forced me to rest and then I started to make some progress, and I’m sure everyone is different, I wish I was one the people who could feel better from working out. I know that might not be possible for you to rest as much or at all when you have children, ( I don't have children so I can't compare to the amount of work you have to do and I don't mean any of this to sound insensitive at all) but is there anyone who can help and give you some time to purely rest to see if it helped? The improvements I'm having lately are; the frequency is manageable- every 20- 30 mins, sometimes longer, and occasionally I get 1-2 hours of being comfortable, and that is becoming more frequent, I can sleep for 4-5 hours in one chunk, I have bowel movements everyday, my hair skin and nails are better, I just started to regain weight and am back up to what I was when I started treatment, so although some days are still bad, and when I’m in flare it's so easy for me to forget the improvements I try to list the things I am grateful for every day and hold on to the fact that one day I will be symptom free and my body will be the healthiest it has ever been.
I have some book recommendations if you are interested: I know you said you don't have time to meditate, but if you decide to try again this book helped me start and made it seem much more accessible- http://www.amazon.com/Real-Happiness-Meditation-28-Day-Program/dp/0761159258 . I also read this book http://www.amazon.com/Ask-Given-Learning-Manifest-Desires/dp/1401904599 and it's a bit like the secret but I started doing some of the processes to feel happy and it really seemed to help everything mentally, especially the 'art of allowing' it helps you step back from stress and anxiety and let other people do what they are doing without it having to affect you. If you decide to read the book depending on your personal views I think you can adapt it for what you believe in or don't believe in, but it helped me so wanted to share. Also there is a list of things to say to yourself if you are very ill which also helped me, but without context to the book I'm not if they would just sound strange but here they are:
Do lying down comfortable, undisturbed for 20 minutes. Breathing deeply, read these
statements to yourself:
It is natural for my body to be well.
Even if I don’t know what to do to get better, my body does
I have trillions of cells with individual consciousness; and they know how to achieve their
individual balance
When this condition began, I didn’t know what I know now
If I had known then what I know now, this condition would never have started
I don’t need to understand the cause.
I don’t need to explain how it is that I am experiencing this illness,
I have only to gently, eventually release this illness
It doesn’t matter that it got started. It’s reversing its course right now
It’s natural that it takes a bit of time for my body to align to my improved thoughts of Well
Being
There’s no hurry about any of this
My body knows what to do
Well being is natural to me
My inner being is intricately aware of my body
My cells are asking for what they need to thrive ; Source Energy is answering
I am in very Good Hands.
I will relax now to allow communication between my body and my Source to communicate with
my cells
My only work is to relax and breathe.
I can do that I can do that easily
OK I will stop this crazy long ramble now, and I really hope it has helped in some way.
Claudine
Claudine-that book really
Claudine-that book really bothered me BUT I LOVE that series of mantras!! I had copied that and put it in one of my symptom journals. I need to go back to that. I think it is brilliant. I alos gave it to my sister in law who has colitis. Thanks for the reminder I always wanted to type it out on here but I always thought it would take me too long so thanks! (I am not skilled in the art of copy/paste hahaha)
it is hard to not to feel like I am at fault for not being able to heal. Honestly I started out htis treatment with so much poisitve energy and i thought the worst had past and so did matia frankly so trust is tough for me right now.
Ladies- thank you for taking the time to reply. I am again having to dig even deeper than i thought possible to get through this current bad span. I will.
Hi Dier
Hi Dier
I feel for you and I too worry that I will be one of those supposedly "easier" cases that take longer. My symtoms are pretty mild, but other than a few days in my 5th month (and yesterday and today!!) I have not had many big changes since month 3 or 4. I still deal with frequency for half the day. Usually I don't have pain so I am thankful for that. But I almost always have bladder awareness and it is still often very uncomfy to walk distances and to drive. Dr. B told me it was going to be a year, and knew from the beginning that it would probably take longer. Maybe my use of topical acne products as slowed my progress. I am weaning off those now. so we'll see...
Two things come to mind. I know it is just more stuff to research but here is a QUICK link to learn the BASICS of the Sedona Method. People have cleared chronic fatigue and other health problems just practicing this regularly over a period of months. I think the practice of consciously letting things go in the moment and not fighting them will help relax the autonomic nervous system. The thing about this is that you can do it anywhere and it only takes a few minutes. You can do it while driving. The longer you do it, the easier it gets and it really helps me stay present. It is VERY different than meditation. But very powerful.
So you have been a big proponent of trying to stay present and I have been thankful that you have continuously pointed this out. The difference is, Sedona is a practice of staying in the present that is very powerful and has worked for thousands of people that practice it.
Here is a link to the Sedona Method quick start. I printed this off my computer for reference. If you feel like making a 47 dollar investment, you can download an MP3 from the Sedona.com home page which gets you a 2 hour explanation of the method and it is WONDERFUL. And it is broken up into 4 parts so easier to manage with the kiddos.
Here is the freebie link:
http://delicioushealing.com/methods/sedona-method/
The other is Dr. John Sarno's work. You may be familiar with it as it relates to back pain and chronic muscular-skeletal pain. I read a case study about a women healing herself from IC using this method. I have links that help you practically apply the approach outlined in his book. It is a definate paradigm shift and asks that you accept that your pain/symptoms are a strategy that the body has to avoid be present with feelings (not old feelings, just current feelings). This focus on the pain causes a bad loop in our central nervous system. It is hard to explain but I have more info if you are interested - send me an email. I am thinking of exploring this further for myself.
In the meantime I highly recommend Sedona and it may resonate with you more that meditation, especially if you hear the 2 hour lecture where he talks you through the method. I know you will like it!
((((Hugs))))
If we don't excel at health, the only other option is disease.
Hi Mimi I got the book from
Hi Mimi I got the book from the library a few weeks ago. My main issue with it is there was a part about a man with MS who realized he was "holding on" to his illness to get sympathy from others. I seem to one of the few people here who are offended by this line of thinking. What do you think about that? Is there a way to use the method without agreeing that I am somhow subconciously benefitting from this? Hope this doesn't sound snarky because I am open to things but over the past 2 p;us years so many people have insinuated or flat out blamed my emotions on this illness.
what do you think?
Sorry Deir, are you referring
Sorry Deir, are you referring to Dr. Sarno's book, or the Sedona Method? I am thinking you are referring to Dr. Sarno, but wanted to be sure.
I understand the frustration with this Sarno line of thinking. But I don't think it is as simple as that we hold on to get sympathy.
Check out this page where the author, Monte Hueftle explains how to practically apply Sarno's ideas. it is much more than what you are describing. I will also send you an email he sent me when I emailed him with some questions.
http://runningpain.com/master_practice_program
If we don't excel at health, the only other option is disease.
HI Mimi- The MS case was in
HI Mimi- The MS case was in the Sedona method bbok. I looked up the Sarno method. I definitely believe negative emotions influence health but I refuse to believe that repressing things is the only thing causing my pain. I have issues like all human beings and I work to release them everyday. So it isn't that I think I am perfect. I just have a really hard time with that type of thinking!!! But I will check out the email anyway.
I have a book suggestion myself- "Anatomy of an Illness" very hopeful and tangible for me and might help others too.
I have been in treatment for
I have been in treatment for 17 months and am not sure if this is considered long. I try not to focus on the time as this brings me down my negative path. Recently I developed almost all loss of my right arm. I have terrible tmj on my rt side and this is the arm that is affected. The pain radiates to my neck and head. I try to accept these changes in my body as part of this journey to healing. Try to stay positive and embrace this journey that we are all in with Dr. Brizman. I to go to Al-anon and recently have been attending CODA meetings which I feel are more relationship oriented and find more of a benefit from this type of meeting. I have to go to meditate with a group or one on one because I am not yet successful in doing this on my own.
It is so difficult to have hope when one's progress is very slow and there isn't.. much consistency in symptoms and pain as is my case and many of us. But we know people have healed or are so much better and for many it has taken time....whatever the body needs to heal. I can so feel your despair - but you will continue to heal...you are on the right path.
Breis
Thanks to all and I am sorry
Thanks to all and I am sorry if I didn't reply directly to all. I appreciate your care. It helped me to feel supported and understood. For now, I am going to try to incorporate more meditation in my life. I have a local Buddhist temple and I have gone to meditation there but ironically my brother, with whom I have a very tense relationship with, is heavily involved there so that makes it complicated!! And a little funny. Can't quite get in the Zen place when you are around someone like that.
Yoga is too disruptive to my back and neck and it also made me worse bladder wise last year so I have been afraid to try again. I tried some guided meditation for a long time and some were helpful and some were harmful so I will go back to the helpful.
I think I have been sick for so long that people have stopped helping me at all so I need to reach out again. My mom took my 3 yr old yesterday afteroon so I could just do nothing. Summer may help a bit. My 2 boys are gong to visit my husband's parents for 2 weeks so it will just be me, Nora and Rob. Nice calm trio.;)
For now, I am going to stick with Dr B. I have made a loose decision to keep going for one more year. If nothing changes then I will take a break or move on. There seem to be a lot of alternative ideas floating around on this site lately and it can be overwhelming. I kind of feel like if you make the choice to work with Dr B- you have to do it unless something is really wrong. It is hard to trust your instincts when you are in pain(emotional or physical) so I am going back to what I knew when I made the deciain to fly across the freaking country without my family. I did a LOT of research and I am going to trust my initial instict before all the fear came in.
What helps me is Al Anon and my Faith so I am going to stick with those 2 and trust that like this, the process of letting go is gradual. I am meeting with a woman who I consider my spiritual advisor on Wednesday and I know she will have some wise words.
I guess I still feel like "why me?" sometimes. Even comparing myself to other patients. Like- "geez, I have a happy marriage, a wonderful career in the arts, laughter etc" what makes me so flippin' 'BLOCKED" But I know I need to get past it.
I AM ready to be healed. I am NOT gaining from staying sick but I am strong and I am using all the experience in my life to build my future so I will have gratitude the best I can today.
"Even though I walk through the valley of the shadow of death, I fear nothing"
The important word in that psalm is THROUGH. I am not going to stay there.
Thanks for reading this epic novel. Hope it helped somone else and not just me;)
Deir, just wanted to let you
Deir, just wanted to let you know I am praying for you! I feel the very same. When will we see the reward for all the hard work and dedication? I have really been focusing on meditating every night before bed to help clear my mind and help me fall asleep. I wish I had the answer to all our questions of when and what will take all this away, but with no real place to turn I continue to trust this treatment and continue on this path to a pain free, no frequency, healthy life. Huge Hug!
Deir, thank you for your
Deir, thank you for your honesty and straightforwardness. We will get through!
xo
Mimi
If we don't excel at health, the only other option is disease.
thanks!
thanks!
C-
C-
I am prayign for you too. Here is what I think about sometimes: there is virtually no way we won't eventually start seeing improvements because of all the good htings we are doing for our health, right?
C- maybe we could make a deal to pray for eachother every day. It has to have some energetic impact.
Sounds like a great plan,
Sounds like a great plan, Deir! Yes, can't beat the power of prayer! Hang in there lady!:)