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Hi Everyone!
My name is Julia and I have been working with Dr. Brizman since late July of this year. Like many of you, I can remember the exact day when my IC symptoms started: Aprl 20, 2012. I woke up with what I thought was a UTI only to find out after a series of tests that it was not. As someone who has been interested in alternative health for some time now, I made a fairly quick decision to stop working with my urologist and to see Dr. Brizman.
Most of my friends and family have looked with skepticism upon my decision to work with someone in the alternative medicine world. Compared to many, my IC symptoms are mild (mainly intense frequency and pressure), which has also led my friends and family to discount the seriousness of IC and the physical discomfort that I have experienced. It has been an incredibly isolating experience for me. My family also does not like to talk about hard things so I have often found it challenging to communicate the support that I need, such as having certain foods in the house when I visit home, etc.
It has been a shock and a challenge at the age of 24 to accept this condition and to move into a mental space of embracing this beautiful opportunity to love my body and bring it back into balance. Most of my friends enjoy themselves through drinking and activities that do not promote wellness. It has thus been incredibly isolating to not partake in those activities with them though I am slowly learning to enjoy myself without engaging in those things and to identify new forms of social support. Moreover, I have a history of anorexia and binge eating disorder. Through my eating disorder recovery, I was taught to eat all foods in moderation. Having to adhere to a strict food list has at times been a challenge for me given this history. In addition, having a condition like IC has fueled an idea that I really struggled with when I had an eating disorder, which is that I "am a problem or a burden" to those around me.
At the end of the day, I know that IC is one of the best things that has ever happened to me. That is really hard to say sometimes, but it is true. Though my bladder is still making progress, I know I am on the right track and my body has otherwise never looked or felt better. I am so grateful for this engrained respect I now have for what I put in and do with my body. However, I have really struggled in recent months to adhere to the treatment protocol.
I am mainly writing this post because as my symptoms have improved, I have not had the intensity of frequency to motivate me to continue stricly adhering to this difficult treatment protocol. I have cheated often and my frequency has gotten much worse in recent weeks. I know that I am incredibly lucky to not experience pain on the scale that many of you have and you are truly in my thoughts every day as I pray for your continued recovery. I have sought support from local IC support groups, but most participants are getting help through conventional medicine and are skeptical of what I am doing. I guess I am looking for someone who I can support and who can help support me on a regular basis by checking in and seeing how things are going, how we are doing with the protocol, etc. There are so many strong, amazing women on this site and I would love to support you and learn from you. If anyone is interested in sharing their email or phone number, I would love to hear your story and share mine. It would be wonderful to have someone to help hold me accountable by checking in on a weekly basis.
I do understand that I am ultimately accountable for my actions, but would appreciate participating in this incredibly supporting community to help me and others do so. I wish you all the best every day of this challenging process and admire your courage to take an unconventional route to acheiving true health.
Much love,
Julia
There are a few of us who
There are a few of us who talk regularily on the phone etc. I have talked about starting a conference call for people healing from IC but I just havent done it yet. I would be happy to speak with you though, I also had an eating disorder many years ago and know how that goes. If you want, email me and we can exchange phone numbers. This is a very tough thing to go through as you will see how I am feeling today based on the post I just put up. We all nee to help each other!
Hi Julia!
Hi Julia!
I am so glad you are reaching out. I too have had an eating disorder and was also drinking far too much in the past 5 years since my youngest daughter was born. The diet is hard, but you have done it, and you can do it again.
I wonder if the sugar book that Dr. B just posted on her blog might be helpful? I think the author addresses alot of the issues relevant to those of us with eating disorders. I think after treatment I can moderate my sugar/alcohol consumption, and make healthy treats for my family. But I dont' know yet!
People further in treatment, or who have finished treatment have let me know how important it is to be honest and not cheat because cheating is like walking on a broken leg. The leg might be partially healed, but is not strong enough to bear weight and can be re-injured so easily. Once you are fully healed, your body will be able to tolerate fruit, and the occasional sweet, and you will know what things will trigger it. For some, it has taken a relapse to bring this point home. Maybe for you that time is now. But most of those who have relapsed are still on the healing path and doing well. After treatment you will be able to find your path of moderation and true health!!!!
I am only 2 months into treatment, but would be happy to be a support to you if you think it would be helpful. Just email me directly!! Or perhaps someone further into treatment would be appropriate. I personally could not have come this far without Bonnie's support. She has been INVALUABLE. Pick your confidants at home very carefully. And leave the updates to others very minimal. I say things like, "Thanks for asking. This is a VERY long healing process, like drops in a bucket. My healing may take one or two years. I am taking it day by day. It is very challenging. Thanks for your concern." and leave it at that.
As for my husband, I get very frustrated with his responses at times. Therapy might be helpful if you can afford it. Also, if you can't get the support that you need, ask for specific things from him. Can he cook, do house chores? Can you have 20 minute "de-stress" conversations where you both can talk for a few minutes, uninterrupted, about the stresses that you are both having without any commentary from the other. Just listening and supporting? Can you have some hugging sessions each day? We have done the "de-stress" converstions in the past. It is an exercise from the Gottman Institute. Visit this website for more information. There are also some good websites on hidden chronic diseases. I haven't looked closely at them yet.
I am not postive all of the time, but maybe because I have been through infertility and pregnancy loss, it has made me a little stronger in battling this illness, because I have done some very hard things in my life and come out the other side. The only silver lining on my past pain is that it can help my current situation. I am so thankful for Dr. B and for this community.
xo
If we don't excel at health, the only other option is disease.
Hi Samara and Mimi,
Hi Samara and Mimi,
Thank you so much for your kind words and thoughts! My family was not very supportive of my eating disorder recovery and I really found myself having to go it alone at a really young age. I think I have carried that sense of independence over into IC healing when I really need the support and guidance of others, which I hope to offer as well. It's easy to think "Why is something bad happening to me again?" BUT what I really know is that IC offers a deeper layer of healing for my body and soul. I do appreciate that opportunity to bring my body into balance. I think the greatest struggle right now is the people pleaser inside of me who finds comfort in eating like others, drinking when others want me to drink, etc. I have to answer to myself at the end of the day and live with the consequences of my choices but I have been treating my body as if I answer to others. I guess I am only human and am sorting through this with time. deeply appreciate your support and will definitely be in touch!! I wish you both well in your healing and look forward to speaking with you more!
-Julia :)
Hi Julia, I haven't started
Hi Julia, I haven't started treatment yet (I'm waiting for my first appointment with Dr.Brizman in April) but I've been on the list 1 diet for almost a month. I've been struggling with IC for nearly four years. I'm 23, and I definitely know what you mean when you say you feel isolated. It's hard when your friends are going out and enjoing themselves, and they have no idea to the way you feel or don't understand why you have to stick to such a strict diet. I'm lucky to have a very suportive family and boyfriend so I try to count my blessings. Given your history of anorexia, I can understand why that makes the diet more complicated! I'm fine now, but I also have a history of an eating disorder in my early teens and I've always been a bit obsessive/anxious when it comes to eating normally - very all or nothing! Anyways, I'd be happy to talk to you if you'd like to chat more and I'm so glad your bladder is feeling better with treatment! It would also be nice for me to chat to someone who has been in treatment for a while and can give me some tips along the way! My email is megbolza@hotmail.com. :)
As you can see, we are delighted to have you reach out.
I have been posting on and off for a year, sometimes about the bulimia that got me into big bad trouble in my 20's. Now I am 54. I thought I was going to struggle with the diet more than I have, given that my eating disorder recovery involved not restricting myself. It turned out that I could do list 2, complaining the entire time that ti was like easting moosh 3x a day because it hurt not to. Now that I am farther along and my bladder is much better it is easier because I am eating yummy stuff that is on the List (4 and 5.) I don't recommend cheating though. This disease is serious business and it has an insidious and terrible way of striking back. The best we get if we follow the protocol is good health (and I am not there yet).
We don't get permission to go back to eating sugar and drinking alcohol but with fruit and fruit sweetened deserts and all the wonderful organic healthy food we get to eat, it is no problem. It took me 6 mo to wean myself off my psychological dependence on white wine but I am really glad now not to drink and I do not miss it.
We are glad that you are here and you can contact me bonnie@bonniezyates.com si vous voulez:)
Bonnie,
Bonnie,
Thank you so much for your reply. I am so glad to hear that your bladder is doing much better!! The huge challenge for me is getting support from my family in treatment. They are worried that I am just relapsing into my old eating behaviors because i have to be so strict about food. I, psychologically, feel no temptation to be back on that path and feel really healthy in my attitudes about food and weight otherwise. I find myself trying to prove this to them by eating foods that are not as healthy and not in the protocol so that they will not worry. It is a bit of a mess! I really appreciate your understanding and wish you all the best!!
-Julia :)
Julia,
Julia,
Please rethink eating foods that are not on the protocol. It makes your treatment more complicated for Dr. B because she may think that a particular protocol isn't working for you when you have an increase in symptoms, but really it was the food that you ate.
I know it's hard not to have the support that you want from your own family, but do what you know in your heart is best for you and your healing. In the end, you have to live with your body, they don't. They can do whatever they want with their bodies, but you have a responsibility to yourself first.
I speak from experience with this. I use to try to please a parent who could never really be pleased. Now that I've stopped that, I am so much healthier emotionally and it is helping my physical healing. I have learned to love and value myself and others, and I know how to set better boundaries in my relationships. There is actually a book called Boundaries by John Townsend that is excellent at addressing this issue.
With much love,
Hi Julia,
Hi Julia,
WOW, what an incredibly wise, insightful, courageous, and grounded 24 year old you are! You have such an inspiring wisdom to your reflection, and I want to thank you for sharing your experience here.
I am 25 and have been suffering with many of the same social stigmas that you listed in your post. Although, I have found, like you, that having IC has allowed me to embrace a healthier and more conscious lifestyle and perspective that I feel so fortunate to have discovered as a result.
I was diagnosed long ago with anxiety, ocd and depression, and although those issues never manifested themselves as clear cut eating disorders, I definitely have a tumultuous and neurotic relationship with food that I am trying to deal with as I follow this protocol.
I would feel so blessed to help support you in whatever way that I can, and to have your support in exchange during this time.
Please feel free to email me hannahevew@gmail.com, if you want to talk on the phone I'll give you my number via email.
Keep moving forward!
Love
Hannah