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Hi everyone,
I'm a relatively new patient/newcomer to this website, and although I check it daily for new forum topics (viewing them whenever I do), I rarely post any comments myself because the topics are usually questions I'm not qualified to answer (at least yet, being so new to this treatment!). When the forum seems quiet, it makes me feel a bit sad and lonely... Then I started wondering if maybe there are a whole lot of patients like myself who check this website/forum frequently for a sense of "community" (or just not being alone) but don't necessarily post anything.
I guess all I'm trying to throw out there is that it would be nice to know that even though others might not post frequently, at least they are there. I'm here and I care so much about each and every person who is struggling with this horrid condition like I am. It really helps to know we're not alone. :)
Thanks for taking the time to read!
Sarah
Hi Sarah,
Hi Sarah,
For the last week I too have noticed how quiet it was. I've been a patient for such a long time that I often don't post unless someone reaches out - kind of like you.
So, welcome, and it's nice to hear from you.
Hi Sarah
Hi Sarah
I don't post here much but always read all the posts. I especially like to read DR Brizmans blogs. How long have you been in treatment, I have been in treatment now for 17 months. How are you doing in treatment, I hope you are noticing an improvement.
Anyway welcome to the forum.
Hi Ladies,
Hi Ladies,
I have been thinking about this issue for a few days. When I was rereading Dr Brizmans post from a few months ago, she mentioned how she noticed the blog had become quiet - in turn it quieted a part of her. Most of the traffic has moved to a Facebook group... change inevitably happens- I get it. However, it saddens me to think of the blog being as silent as it has been because we really do lose that sense of community and the Doctors do see the thread topics. So, when I have concerns I would like to share, I will make a point to post them on here;)
in short, the answer to your question is....no, it's not as quiet as it seems;)
Katie
Hello Sarah and welcome! I
Hello Sarah and welcome! I also feel like the page has moments of quiet, but I know for me there are so many things I want to ask, but I am pretty outside the box as far as my healing and unique issues so often don't post about these things. I think many of us are still very active in reading others posts, but for me sometimes I feel so exhausted and overwhelmed that all I can do is just read and not really comment. As others have commented this page is still active, but definitely has moments of quite.
Welcom Sarah!!!
Welcom Sarah!!!
Sometimes I don't post because I have been a patient for a long time and I am afraid I scare people!! Also- I am just so so busy and I am bad at typing! lol I understand the need to feel connected and I will try to make a better effort. You are not alone.
Thanks for all the replies
Thanks for all the replies and welcomes, everyone! I hope I didn't mean to sound like I think it's everyone's responsibility to keep posting actively just for the sake of others - I was more just curious if there were more people like me who are definitely here but read waaaay more than post... and it appears there are! :)
Cathy, I have been in treatment for almost a month and a half now, and I can't say I've seen lots of improvement yet, but I'm also six months pregnant, so that limits Boaz as to what he/we can do to jump-start the healing process. I guess for now we just have to stabilize me until I'm done nursing (which I may have to cut short, unfortunately, because I don't think we can afford to stretch out treatment any longer than absolutely necessary!). I've been experiencing some yucky die-off symptoms - mostly increased bladder irritation and acne :/ I'm sure the pregnancy isn't helping either of those issues lol! But I'm hopeful that I'm in the right place to get better :) and I'm not sick of list 1 foods yet, thankfully... How has your experience been so far?
Thanks again, everybody!! :)
Sarah
Hey- I don't tend to give
Hey- I don't tend to give advice but I just want to say- Reconsider cutting nursing short!!!! It is the single most importan things you can do for your baby's developing gut, immune system and future health. Please read as much as you can about the importance of human milk. I am so glad that I nursed my daighter as long as I did because she already had a disadvantage being born to ME- who had an already taxed system.
Don't assume that nursing will impact your symptoms in a bad way. I for one believe that nursing helped me. When I got my period back (while nursing) at 10 months PP- IC started up for me and then when my daughter weaned completely last summer, my symptoms got much worse. I believe the hormone shift that signaled the start of PP periods, impacted my system enough to shift into IC (along with lots of other things of course) Not that I could have maintained that forever anyway(I guess I could have pumped for a while but that is just weird) but I am just saying- don't jump the gun on that one.
Dr B never once suggested I wean my daughter but she did say that nursing can be more dehydrating so make sure you are drinking more h2o than the average patient.
As far as length of treatment- you really can't do much to influence that- other than following the protocol and as much self care as possible. I thought I would be a quick case and frankly, so did Dr B.
Parenting has probably impeded my slowness in treatment but that is due to the constant stress and demands of rasing 3 kids- not the nursing! I am sure there are people for whom the nursing hormones make IC worse but for me- it balances things out and I am assuming it helps with Estrogen/Progersterone regulation therefore, helping my overall balance.
ps- No offense meant for those you who did not or could not nurse. Only my info/experience and it is only a part of the whole picture when it comes to children's health but I think a very important one especially for Moms with compromised gut health
BEST OF LUCK!!!
ps- If you think about it-
ps- If you think about it- you'd spend a lot of money on formula anyway!! Breastmilk is free.
Deir, Just out of curiosity .
Deir, Just out of curiosity ..... How long did you nurse Nora?
3 years. But the last
3 years. But the last probably 6 months were like 5 minutes a day with some days skipped
I am doing well, I would say
I am doing well, I would say at least 60 % better, I am always aware of my bladder but I would not say painful just always aware of it. Frequecy is my worst problem though that is improving slowly, I am on list 4 so I am really enjoying the foods allowed on that list.
I hope the last 3 months of your pregnancy fly by for you and then you will hopefully start having some relief. I found the syptoms decreased slowly over time, sometimes was hard to know how much I had improved, so I would often think back to how I was a year or so ago and then I can say yes I have improved a lot.
Keep us posted on how you are doing with your pregnancy and treatment
As another long-time patient,
As another long-time patient, I've noticed that people's relationship to the forum goes through various stages as they progress through treatment. In the beginning, people have lots of questions and post fairly often. However, much of their posts are now happening on the Facebook group page. That said, the answers to many posters early questions can still be found on the forum by searching the archives. I've always liked looking through the archives as many old posts are as fascinating and illuminating as current posts.
After people have been patients for some time, I think several things happen that lead them to post less. 1. They become well-versed in this protocol and have fewer questions. 2. They start to feel better and spend less time on this site. 3. They worry that sharing their setbacks will be upsetting to newer patients and become more hesitant to share. 4. They make personal connections with other patients and reach out to each other on a more individual basis.
That said, I love the forum and feel like it is an incredibly valuable resource. We're happy to welcome new people on here (and on Facebook) and I for one think it's really important to keep the conversations going on here.
Hi Sarah,
Hi Sarah,
Welcome :) I've been in treatment for a year and a half and don't post much, but I do love the forum. I check in at least once a week to see what's new and I do search the archives all the time to double check all my weird symptoms. If for some reason I can't find it - I will throw out a post to see if someone can relate. i wish I could post more - since I feel this is an invaluable tool - but we own our own business so my husband works 6 days a week 12- 14 hr days - so I am like a single parent to two little ones - so it's a lot to juggle plus working on healing :)
Claire C
Hi Sarah! Welcome. I agree
Hi Sarah! Welcome. I agree with all the previous posts and WOW what GREAT advice Deirdre gave about breastfeeding and just treatment in general. I do hope you seriously, seriously consider her advice. I KNOW Dr. Boaz Brizman would support you in breast feeding as long as possible. My daughter is in treatment with Boaz, and it was one of the first questions he asked me about BOTH my girls!!!
I think all of us struggle to keep this site active since we are all busy and Facebook is so quick with instant gratification (hope you do message one of us so you can join Facebook). I think all of us will work as we can to keep this forum going!
I have been in treatment 19 months. I had a LOT of work to do with acne, nightsweats, constipation, bloating, urgency, frequency, dry skin, toe fungus, anxiety and OCD. The OCD was really impacting my family, probably still does but Dr. Brizman says it will go and I trust her!!
I have made a lot of progress but boy it is a windy, windy road, to use Dr. Brizman's phrase. I have had good windows lasting 3 weeks or so, and right now I am in a window where I am having ZERO bladder symtpoms for the past 5 days and die off which is rare for me. Plugging along and trying to be grateful for the bits of progress I have had. Nightsweats are gone, I sleep through the night, my periods are boring and pretty normal, if a bit heavy (probably starting perimenopause) my SKIN has improved!!! digestion is slowing improving but I have a ways to go. Feel like my gallbaldder and liver are still detoxifying and I am unraveling some old unresolved illnesses but it is all good so far. Please do keep posting and maybe consider the facebook group as well?? xo
If we don't excel at health, the only other option is disease.
Mimi, zero bladder pain for 5
Mimi, zero bladder pain for 5 days that is just great, happy for you.
Oh my goodness, thank you
Oh my goodness, thank you again everybody! I really appreciate all the support and warm wishes!
deir, I don't mind you giving advice because I know you have nothing to gain from it! I always appreciate when people share their knowledge with me, so thank you. I have been doing so much reading and learning in the whole health department over the last year or so and have made many, many changes. Now that I'm going to be a mother, I have done a lot of research and made a lot of decisions about how I'm going to feed, clothe, and raise my kids in a MUCH more natural way; the only problem is that the lifestyle changes I've made and will continue to make are already so extremely expensive, and we're a one-income family right now (and will be for some time, most likely). My husband works so hard, and we're going to barely make ends meet as it is - our budget does not include my medical treatment because we have a certain sum set aside for it, but once that's used up within this year, I honestly have no idea where the funds are going to come from to pay for this treatment. I plan to get a part-time job if I have to, but it's going to be hard with my symptoms dragging me down as they already do ON TOP OF being a new mother. I am already heart-broken and grieving at the thought of having to nurse for only 3 months or so, but it may have to happen. I know it's not the ideal, but I try to console myself that there are millions of people who have no choice but to do less than the ideal and who still turn out fine. I also plan to pump and freeze as much as possible during those 3 months to extend it for her after I have to stop (if we end up deciding that's what we have to do). I tend to be a very anxious person anyway, so it's tough worrying about everything that COULD happen, but that's where I have to trust God for wisdom to make the right decision and then to REST in that decision. It's so hard!! lol But thank you again for your care and concern - I'll definitely consider carefully and keep you posted! :)
Love and hugs to everyone!!
Sarah
Hi Sarah
Hi Sarah
It is great you are here as this treatment really does work. I trust you will find a way to pay for it!!
I am still trying to figure out why you would have to stop breast feeding? Sorry, I am confused. The moms I know that work full time continuted to breast feed and pump for over a year. Is it because you are going back to work part time? Because that can be easily worked with when you talk with the hospital lactation consultant or go on line to get support and strategies? Are you worried about the IC pain with breast feeding? This you should discuss with Boaz. It sounds like the lack of hormones will be GOOD for your IC. If I were you I would breast feed as LONG as possible. Periods are NO FUN when you are still symptomatic with IC. I am sorry I am just not clear on why you would have to stop?
If we don't excel at health, the only other option is disease.
don't mean to hijack the
don't mean to hijack the thread, but THANKS Cathy! Had a 7 hour headache yesterday and my weird rash continues. Grateful for the die off and the calm in my bladder!!!
If we don't excel at health, the only other option is disease.
Mimi- How fabulous to hear
Mimi- How fabulous to hear your bladder is doing so well! I can only dream of being symptom free for any period of time - although I am much more comfortable than when I started.
Hi Mimi! I just came back
Hi Mimi! I just came back here to post my new discovery since my last post 30 minutes ago, but I'll answer your question first :) Boaz said he can only keep me from going backward with my IC while I'm pregnant and breast-feeding; he can't give me the stuff that will really start healing my IC until I'm done breast-feeding. My original thought process was this: I'm going to have to be in treatment with him (spending hundreds per month) throughout my whole pregnancy and breastfeeding (at least a year or maybe two if I want to do what most people do), and because we can't even start the "real" treatment until afterward, I'll be paying hundreds per month for years. He said he thinks that once I'm done breastfeeding and we can really start the herbs that will help me heal, it will be a fairly quick process (I guess I'm not a complicated case? but I'm not counting on anything after reading a lot of people's similar stories - I'll just take a day at a time so I'm not disappointed). BUT, if he thinks it will be a fairly quick healing process after I'm done breastfeeding, I figured I'd have to stop breastfeeding at around 3 months so I can start getting better faster before we run out of money for treatment!
NOW, I just did a little research on the cost of formula (and believe me, if I did formula, I planned to get the very best there is to offer), and I was SHOCKED at how much it costs. It looks like it would cost roughly the same as treatment each month!! This was actually relieving to me because maybe it means that I will be able to breast-feed her long-term after all!! I want only the best for her and would absolutely hate myself if I did anything that caused her to be at risk for getting a horrible illness like IC later on in life, so this may be my answer :) and if I can find a job where I can work from home 10 hours a week or so doing book keeping (I'm an accountant), I could definitely make enough to pay for the ongoing treatment until and then even after I'm done breast-feeding. And hey, maybe even if it's a year or two before Boaz can start giving me the stuff that will really start the healing, the process will be even faster because I've built a good foundation over that time (by eating the diet and taking the Juice Plus and few herbs he has me on now)? I don't know, but I guess I feel a new sense of direction after finding out the cost of formula is pretty much equal to the cost of treatment anyway! That almost makes it a no-brainer that I'll breast-feed :)
Okay, sorry for rambling on and on... I was just excited and wanted to come back and share the news... but now you have my explanation for my prior thought process before I was "informed" lol :)
Hey- you will work it out ,
Hey- you will work it out , Mom! You will do great.
In a somewhat self-centered side note- Ihave to say I am personally shocked to read what Boaz told you. That was never said to me. If that were the case, I would have made an effort to wean Nora a little sooner although not much because I just believe in breastfeeding especially not despite considering my health!! Also- while my supplements change sometimes daily, nothing changed from before or after I stopped nursing.I need to process this a bit. Not sure what I feel about it. Maybe you have a different type of IC than I do- we are all so different! Can't imagine Matia would have not mentioned that to me. hmmmm My head is spinning
I also know there was another nursing mom on her a long time ago who was nursing an older kids. (emmarenee) I chatted with her a bit about it. Maybe Boaz has a different approach than Matia.
Ps- I have no idea how
Ps- I have no idea how nursing would affect another individual- only myself. I thrive on the lactating hormones- but those only last a while anyway- they dramatically drop once the baby is eating any solids. Nursing even a six month old is entirely different than nursing a 2 week old. And nursing a 2 yr old is absolutely differnt (as far as the mom's body goes.)
Now the lack of sleep is another matter-but whether you are lifting your shirt or mixing a bottle- you have to feed the baby in the night anyway! LOL
Thanks, deir :) I'm not sure
Thanks, deir :) I'm not sure why your case was different, but I know the doctors use combinations of different herbs/supplements based on the condition of the individual, so maybe our backgrounds and causes for our IC require different methods? Maybe what they needed to use for you wasn't harmful to your baby, but what they need to use for me could be? I'm okay with having a slower recovery if it means my baby will be safe, but it doesn't mean I don't get frustrated that while I'm working so hard at at being faithful to the diet/protocol (which requires a lot of sacrifice and self-discipline in social settings lol), I'm only getting "stabilized" and not necessarily better. :/ Oh, well - I just have to look at this time in my life as something that will one day be in the past!! :) We'll all get there!!
Sarah- you already have an
Sarah- you already have an amazingly healthy attitude- you will do great!
Yes- I guess the things i am taking are not contraindicated for breastfeeding. Weird