Forum Sifter Here!

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Okay so I've become obsessive with tracking people and sifting through old posts. Is there anyone out there whose done the same?! I really need to stop as its adding to my anxiety about starting treatment quite a bit. It seems like I'll try to track someone and they post and post about feeling awful and being in treatment for awhile but still struggling, then all of a sudden poof they disappear off of the forum. It's kinda scary to see this pattern! I wonder where they are now and how they're doing.. Or do I really want to know? Hmmm.  I hate being so super sensitive to every little thing I read on here, I've told myself countless times "ok I'm not going on the forum anymore until I'm in treatment and seeing improvements because it's just too scary", but then the next day here I am again! It's hard to not want to read all of the support even if it's not me posting, because no one else understands. Very conflicted here. I just hate how people drop off so suddenly and never come back to say how they're doing. It leaves us all hanging and wondering! Anyways I just needed to vent about my compulsive forum sifting lol. And btwim STILL pregnant. I'll be 40 weeks Saturday and have had 0 progression. Cervix is up high and closed, if I haven't gone into labor by Tuesday they want to schedule me to be induced next weekend. 

Mrs. A's picture
Mrs. A

You are so close to having your baby! I thought when we hadn't heard from you for awhile that you might have already had your baby. Soon, yeah! I am so excited for you. I love to read the forum, too, gleaning here and there. And I wonder where many of the people have gone, too. But I tend to think they are well and have moved on with their lives because they feel so good. I am eternally optomistic. :) I really appreciate Natalie when she posts as she is on list 5, I believe, and doing quite well. It just warms my heart to hear someone is on list 5 and doing well! 

MinnieMouse's picture
MinnieMouse

Hi! I actually sent you an email but it must have not worked. But ya no baby yet, almost though. By next weekend for sure anyways. I asked you in the email if you had any good ideas for frozen meals that I could get ready before baby comes since I'll be following the diet 100% and starting treatment right after. I'm totally cheating on it right now, it's my last hoorah until I start my own journey towards recovery. Anyways so far I have done breakfast burritos but need more ideas for frozen dinners :) if you or anyone else has any I'd love to hear! I'll be starting on list 3. Lots of love!

Jules513's picture
Jules513

Hi Ladies!
 
I am recently suspected of having IC and am considering Dr. Brizman's treatment. I have heard great things about it but am nervous that it will not work for me. I have also heard that going the traditional, Western medical route will not help me and I am really scared that there is nothing out there that can help me. Do you have any advice? I would love to hear from you!
 
Thank you,
 
Julia

Mrs. A's picture
Mrs. A

I felt the same way when I first came to Dr. B, would it work for me? And it is working! There really is nothing out there for healing, which is pretty much what my urologist told me when I was diagnosed two years ago. But you have come to the right place, Julia, and I hope you will put your trust into Dr. B's hands. I remember how relieved I was to have her managing this illness for me. It was just such a great relief after trying to manage it on my own for one and a half years. I am so thankful to God for having found her, and I still feel so thankful six months later. :) Welcome to the forum!

pterzwife's picture
pterzwife

I concur. I did 9 months of Elmiron instills after having had a lot of antibiotics and a bunch of invasive tests. It helped fpr awhile and then stopped working. I now know that was because the illness was elsewhere in my body as well as bladder and I needed s systemic cure. We are so lucky we found Dr. B.
 
Highly recommend.

Mrs. A's picture
Mrs. A

this is a great question and got me to thinking how I would prepare ahead for List 3. So different than my old way of cooking before IC. I would probably make up some roast chickens, take the meat off and freeze it, and then make some broth out of the rest to freeze as well. Then I could make different meals out of those basic ingredients such as chicken stew, minestrone soup, chicken pot pie, chicken burritos, etc. I would also make some shredded beef and/or sauteed hamburger or meatballs up and freeze those as well for burritos, chili, pasta dishes, vegetable beef soup, etc. (I shared the roast chicken and shredded beef recipes some time ago if you put it in the search engine.) You could also make up some rice and black beans, and freeze those as well, along with some of the turkey sausages that I shared awhile back. This is quite a bit of work, even if you're not pregnant, so take it nice and slow just doing a few things at a time. You can cook veggies ahead and freeze those, too, but I would buy frozen broccoli and cauliflower for a back up, if you are just plain tired. If you would rather make a chicken soup ahead and freeze it, you could do that as well. 
 
Here is what I made tonight for dinner to give you an idea of how I do it. I had the rice frozen and the chicken broth all made ahead, so it was a snap to put this together. 
 
Shrimp Stew
 
1/2 onion chopped
1/2 red bell pepper chopped
1 garlic (if tolerated) chopped
 
Saute in 2 T. olive oil until soft in a saucepan.
 
1 t. tumeric (if tolerated)
1 potato cubed
2-3 c. chicken stock
salt and garlic powder to taste
 
Add to above and cook for 10 minutes until potato is soft. 
 
12 shrimps (I used frozen ones that are already cleaned and deveined)
 
Add and cook until shrimp are done, about 5 minutes. Serve over cooked rice in a bowl with chopped avocado on top. My husband likes crushed red pepper flakes on top, too. So I serve those on the side for him. 
 
I hope this helps some! Sorry I didn't get your email, so I am glad you mentioned what you had asked. I am sure others have some great ideas, too! Blessings to you with your sweet baby coming! :)

MinnieMouse's picture
MinnieMouse

Thank you Mrs A!

fahlmank's picture
fahlmank

Hi Lindsey,
   First of all, I am so excited for your baby to arrive! This is such a special time. Enjoy it!
   I went through a pretty intense phase of questioning whether or not treatment would work for me. I was about four months in and really didn't feel any better....I was terrified. I emailed "older" posters from this forum and received many responses. The vast majority had significantly improved or became symptom free. There were a few who did not have success with this program, but, they too, had found someone else they were working with and feeling better. I was upset after speaking to a few women who had left treatment, but my husband kept reminding my of the many emails I had received from women who had been greatly helped or even cured.
   So, the answer to your question is..... most women and much better or symptom free. I know I don't post as often anymore because I am feeling better. Since I am not in constant pain, I am out and about. (as long as my heart is doing well... argh;) You will get there too... .it will take time;) 
Katie

MinnieMouse's picture
MinnieMouse

Hi Katie. Yes it is very scary for me to think that this treatment might not work. I really don't know of any other options that I would want to take. So hopefully I don't fall into that category of women who aren't helped like you spoke with in email.. Very scary. Makes me cringe. What kept you motivated to keep going? I would have been so discouraged to read emails like that. The positive ones are good but there's something about hearing someone didn't have success on the program while your in the midst of struggling that really strikes a deep fear into your soul. As it is for me right now :( its like you know logically that there isn't possibly a 100% success rate but you automatically group yourself in with that smaller percent that didn't get help (for me anyways). I wish I could be more optimistic, it would make things so much easier! This disease has turned me into a "glass half empty" person and I hate that. Geez I really hope this treatment works for me like it has for you Katie. I'm so glad to hear that you're not on the forum as much because you're out living your life. Lots of love to you :) thanks for the reply.. Although a little scary to hear, I needed a reality check. Lots of love

Jeannie Burden's picture
Jeannie Burden

First of all how exciting to hear you are due and will have your baby anytime good luck with delivery i'm sure everything will be fine.
I am a patient of Matia's it will be 3 years this july since i flew to California. I was described as "moderate" in intensity IC. It started in 2006 -i am a nurse and always thought i was healthy-i ate well and had a good home life had some antibiotics for recurrent ear infections then had tubes in ears at age 2-3 and no infection since. During University i developed lactose intolerant issues . I went on the pill when i was 22 and had yeast lots vaginally and about 3 bladder infections a year all of which responded very well to oral antibiotic. .Had my first babe at 26 , went on oral pill again yeast +++  i also had some electroysis maybe 7-10 times for some facial hair.(Matia says bad) then i listened to a health provider who suggested depo provera birth control as might be able to tolerate.(Bad choice) I only got 3 shots each last 3 mos and it was then that about once a mos i would get a burning in my bladder last for a day or so (i would think i was getting a UTI)and then it would go away. Then i got it agian and i dipped my urine at work it showed bacteria so i self medicated with cipro (which had been used before) and my bladder went into a bad burn which lasted for about 3 mos. Then a consistently started my IC which never fully left. I tried elmiron, (few weeks) found out i ws pregnant and flared with the pregnancy until about 5 mos then bladder settled until 6 weeks postpartum when burn and low abdominal ache returned.I was also very achey muscles sore and legs ache. I would also have some clitoral hypersensitivity(i call it when it feels like a splinter is present) I had lots of emotion as i spent all my time searching for help.Tried Rimsco and heparin instillations, elavil po .None of which i did for more than 6 mos as no improvement. My third daughter was 2 when i found this website started the diet and went to California.I am very lucky to have a supportive husband (who was a bit sick of me wasting $ and jumping from one supplement to another). it is an answered prayer to be in treatment with Matia - i no longer have to figure things out which has reduced my stress. I have seen major improvements- i sleep the night now, flares are mininal and not as intense. I went on a trip to Florida and no flares. I would say i am 85% better .I am on list 4. I feel like i could live the rest of my life eating like this and feeling like this i'm ok .Emotions are stable and i can plan things without worrying about how i will feel. I have been very lucky i have been quite comfortable through out treatment without much dieoff.However i am not finished of treatment i never thought i would be in treatment for 3 years but hey it takes time and i am comfortable.List 1 and 2 are hard and flares but things stable out through time. I have never regretted this treatment path and would recommend it to my brother in fact who is having chronic sinus and now bladder urinary frequency. I don't post very often but i do read most posts .At first i would become anxious when i read them but as you feel better those thought of obsessing ease off.

MinnieMouse's picture
MinnieMouse

Jeannie thank you so much for sharing that with me. I'm feeling very low today and that gave me the spiritual lift I needed :) It's so great to hear you are on list 4 and 85% better and that you did it with a 2 year old. I have yet to figure out how I'm going to do this with a newborn and trying to breastfeed. I guess I'll just have to take it one day at a time. Thanks again

deir's picture
deir

Lyndsay- Moms are super strong! I sometimes think, "how do i do this?" as far as taking care of kids and having IC but I do! My little daughter was a baby when this started (she's 2- still a baby but don't tell her that!!;) and she is really what keeps me going on bad days. i try to be present with her and just enjoy the new things every day. Then some days- I need a break for a bit and i try to ask for help.It is tough no matter which way you look at it but you will do great. One day at a time.
ps- i am a breastfeeding counselor (volunteer) if you need help- I'll be happy to help you on the phone or email.

MinnieMouse's picture
MinnieMouse

Thanks Deir I might take you up on that :) 

mc2004's picture
mc2004

Deir... would it be possible to have your email for breastfeeding support? I would appreciate having any help I can, if I need it. Which, I'm sure I will!
 
Thanks...
 
LindseyP, I do hope your doing well. 

deir's picture
deir

Absolutely! I'd be happy to help in any way i can. If you are giving birth in a hospital, be especially vigilant that you make it clear that you want to breastfeed and you don't want the baby given any formula or sugar water.
Here's my email- if you want to I'd be happy to talk with you on the phone too.
deirfinnegan@gmail.com

SarahC's picture
SarahC

Hey Lindsey - wow, you're nearly there!
 
I think you'll feel better as soon as you can positively start treatment - just now, you're waiting for everything; for the baby to arrive, and for the moment to start the diet and herbs in earnest. Lack of action promotes anxiety I think - once you're doing things, you'll feel like you're on the path. Hang in there. Many of us are mums with IC, so we're all here for you if you need advice or support!
 
One thought I had that you can even do in the week leading up to the birth (might even help with the birth itself!) is some mindful relaxation: lie on your bed with a pillow under your knees, concentrate on your breathing and allow everything to still. Will hopefully give you a bit more sense of control over everything, and for me does help when I'm in pain.
 
On the forum sifting, I think we've all been there! I too mailed some people no longer in treatment and got back mainly positive responses - many people now merrily living their lives, one woman who'd realised that her IC had an emotional root and was tackling that instead (with success). Only one woman for whom treatment hadn't worked, but she hadn't been able to stick to the diet. I absolutely recognise the anxiety though, and have been feeling it a bit again myself over the last month, having had a dip after several months of steady improvement - I've had a flare of my IBS, which seems to trigger a flare of vulvodynia and just weird congested feelings in the muscles and tissues in my pelvis - so hard to explain! Drives me crazy as if I wake in the night it's the first thing I feel and I can't get back to sleep. Had appt with Dr B on friday night though and she was wonderfully reassuring - said to look how far I'd come, and to think that if I could change that much, it was unreasonable to assume this wouldn't change too! And I remind myself to look at all the improvements and think how glad I am to be in treatment. We'll all get there!
 
If you're after a  positive read, try Carin Willis's IC blog - she was in treatment with Dr B for a while too. Her blog's brilliant and upbeat.
 
Keep us posted on the baby!!
 
Sarahx

deir's picture
deir

Hi sarah- I also feel a sensation that I call "congestion" That is the only way I can explain it to anyone although that isn't really precise either.
 
I am sorry to hesr you are in a rough patch. I think it is impossible not to have those fearful thoughts when this stuff comes up after feeling better for a time. I hope you get through it soon.
xo