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Ok- I know I have taken up a lot of space here but I am hoping someone has some insight. This might be long so TIA for reading. I don't want to scare anyone who is alao struggling so if you're feeling vulnerable maybe don't read.
I am so confused about what the heck is going on with me. Overall- I really can't say that I have had any improvement. I was much better the whole month of May before I started treatment and I was eating more at that time too. Matia wants me to have 2 weeks stabile before adding any food but I don't even have a full good day. I feel bad sometimtes because my bad level is nowhere near some of you (at least from what I can glean from posts) I have very few other issues as well so I almost feel guilty being upset and yet it is bad enough that I sometimes think "How the heck am I going to live like this?"
She changes my herbs all the time and today I am back to no bif and basically my first dose back in May. I am coming up on 6 months of treatment and I am still on list 1 with no spelt because I was trying gluten free before I went to LAso she didn't want me to add it back until I get stabile. I seriosly feel like I will never get stabile but the scariest part is that I feel like I am not progressing AT ALL. She thought I'd be better in a year and now I am almost at 6 months with no improvement. The fears I have are unbelievable. When I went, I felt almost normal, I even doubted sometimes why I was there but then I'd have a bad day and I would know it was necessary. I just don't know if the supps I was taking before were helping with symptoms and now these herbs and probiotics are stirring thigns up or what??? I cant' seem to get any answers from Matia she reassures me it is normal but what does that mean?
I need to see some postive change or at least get some reassurance. I want to believe her when she says she's not worried and it is normal but I just am haivng the worst time.Does anyone have any suggestions of how I can ask her what is going on? I need to know why she thought I'd be eating from list 2 in 2 days and now it is 5 months later. 2 months ago she said she thought I was turning a corner but I haven't. I am so scared. I have NO patirnce with my kids and basically should be hiring a nanny to raise them at this point. If this level goes on endlessly, I don't know how to do it.
How do I mentally handle this? Am I really out of the ordinary?
Please don't tell me to go to a therapist.
Wanted to add: even if you
Wanted to add: even if you need to smack me and say- "calm down you'll be fine" that's ok too. I desperately need to stop the negative fear thoughts.
I understand
I am struggling right now with my mind as well. Reading the Internet is a double-edged sword for me. It's how I found this website, which has seemed to help me some, but the Internet is also a source of my anxiety. I find comfort in knowning that I'm not alone, but when I read how some people are doing, I am terrified that I'm going to get worse or not any better.
I was in a counseling program recently, but I could not attend it as often as I wanted to because of work, and because I couldn't attend it several times a week, my insurance would not pay for it.
I am sad that there is not a group in my area for people with this condition or a therapist who specializes in counseling people with IC.
I also have not been able to find a natural or holistic doctor in my area, and I'm not sure I would feel like traveling to Los Angeles, even if I had the money to come.
My anxiety got the best of me last night, as it does often. I'm not exactly sure how to get a handle on it. The antidepressants seem to help, but I have been leery about taking them. Elavil helps but also causes me to spasm and jerk at night when I am trying to fall asleep. Not sure what is happening with that. If anyone has any insight, please let me know.
What gets me the most is not knowning what is the real cause of this. If I knew the cause, perhaps it could be fixed. I have been thinking about getting a life coach who has had this illness before who could help me focus on positivity.
When I feel like it, I try to exericse in the morning and night, and I believe it may have helped some. I recently purchased Amy Stein's book Heal Pelvic Pain, and I have been trying to do her "Get Out of Pain" exercises.
I am sos orry if I am scaring
I am sos orry if I am scaring you more! I am nervous to post this but I really feel like someone could help. The thing is- I totally believe in Matia's treatment and think she is absolutely right. I just literally want to know what is gong on with me inparticualr. Evn if she said- "You aren't doing as well as i'd hoped but we'll get you there- but it will probably take 2 yrs" I'd feel better. As it is- I feel liek I grossly misunderstood how bad Iwas
I believin this treatment absolutely and I think if you could get here- she could help you! look at all the peole who are making leaps and bounds! She will figure out what the cause was for you.
That being said- you have every right to be freakig out right now. No matter what you decide to do- this is a tough disease. I would try to stay away form reading things that scare youthough. I truly wish I had nevr read the ICN board for the few months I did. so horribly scary.
Again- sorry if I freaked you out more!
Deir
Deir, I could go on and on. But in short, I know how you feel. Matia indicated that it would take me a year to "heal" too. But it will be 2 this next February.
You don't need to be sorry or feel weak reaching out for help. It makes us stronger when we have to face things that are really hard to swallow.
A lot of little things have gotten much better. Like my periods and being able to sleep without strong drugs, and not having to take any other sort of medication, like anti depressants and actually be able to have a sound mind most the time. Also, even though it has seemed like I shouldn't move on up the list, Matia has insisted that I did, and the diet is much easier.
But I still have IC. I still struggle with symptoms I had when I first saw Matia. I went through months of die off, some of it very bad. I never cheat with real sugar, never. But I do have the occasional agave thing, with Matia's approval, and it never bothers me. My bladder is better in some aspects, but I am not better yet.
I get very discouraged sometimes, but I've since gotten over the whole "better in a year" thing it feels more like I can relax and take a day at a time. It might happen for some in a year, but most I think it takes longer. I don't think Matia is trying to mislead anyone, but I do think that if people new that this process MIGHT take over a year, they wouldn't give it a chance.
It comes down to this; what other choice do you have???? We don't have many, I'm sure you know that. And this path happens to have hope of healing, not just covering up the pain and later on suffering more for it.
I'm sorry to be so blunt, but take one day at a time. Stop putting a time frame on your healing. It will only make you stressed out, and add to your body being unbalanced. Except that this may take you longer then a year, and that is OK. That it isn't your fault. Or anyone else's. I would def talk to Matia about your fears. Because it doesn't do you any good to keep pretending in a year you will all of a sudden feel better, tell her how you feel, and your disappointment. I have, and she has told me that for SOME they get better in a year. But for others, in my opinion, most people, it takes longer. That's OK, you are going to get through this, take one day at a time. Enjoy the fact that you have hope, while others have none. Keep remembering that you are not only trying to heal from IC, but also doing your body wonders as far as aging, and warding off other diseases. These are just things I try and remind myself, sorry if they aren't very helpful to you.
Hang in there, you are certainly not alone.
Deir, I think you need to
Deir, I think you need to talk to her specifically about the timeline. I totally get how it can freak you out; I feel like I'm on a clock, a bit (more so because I just turned 34, and am really keen to have another baby - and feel like the clock is ticking on that).
Can I ask out of interest where exactly your symptoms are now? You say you feel like a comparatively mild case; it could be that because your symptoms are milder it takes longer to see change than it does for someone whose case is more severe. In my own case, I found it much easier to track changes when I had frequency as a symptom, because there's something objective to track. Now my only (ha!) symptoms are pain/irritation, it's much harder to be certain of improvement. I do remember you saying that you didn't need to pee through the night all the time anymore, which is an objective improvement - as is having sex without repercussions the following day. Hold on to these things?
I absolutely, completely understand the depression, frustration, sadness and fear that this generates. I'm having a flare again after a decent couple of weeks, and had a sudden wave of panic today - thinking, I can't feel like this again! Not sure I can cope! So I do get it. But all I would say is that, by all the measures I can work out from reading around the site, you're very early in treatment yet. I was in email contact with an old poster who didn't see real, definite change until the two-year point - and then everything sped up very quickly. She feels completely well now. It's drops of water filling a swimming pool - inconceivably slow, but the you turn around finally and the pool's full.
Article
Saw this article today. It made me feel a bit better: It's about mind/body healing - not what the link indicates.
http://www.fightingfatigue.org/?p=2379
internet
just wanted to say watch doing to much internet research other then this site it can be very very depressing and bring about a sense of hopelessness, I to am in a flair after some pretty good months and boy does the panic come back, I'd forgotton how bad IC feels yuck, but hang in there, it must be so hard trying to bring up your children with IC, of course you want to be a good mum, none of us want to feel this way, we all long for those happy painfree days, I hope you get some relief soon, for the anxeity I found meditation tapes really helpful if you can find time to do them, meditation real does help improve your mood. A lovely simple one I brought from amazon is YOUR PRESENT: A HALf HOUR OF PEACE, I tuly hope you get some relief soon delie
Thank you ladies. I feel
Thank you ladies. I feel better now. The one good thing about me is that I get over these freak outs pretty relatively quick. I've nevr cried all day,
Denise- I love your posts and thanks so much. I think you have made such good progress and you should indeed celebrate the sanity!!
Sarah- Yeah- I think you are on to something. I never had the extreme pain people talk about. So it that fades for people it must be very dramatic. It's just that I am so up and down. I never have more than a few good days and that is rare. Generally it is about 3/4 of a good day. The sex thing has been up and down too and I was never sure if it was really bugging me or not so it might bot be a big improvenment that I felt ok yesterday plus I was bad by evening so I don't know if thte sex did bug me after all. I honestly can't remember if I woke up at night before or after I went to LA. But you're right, I don't wake anymore so that's good! Thanks. My symptoms are this yucky vagional crampiness, feeling like I need to pee all the time, and then some painful spasmish type stuff. On a good day, I don't feel much maybe just the need to pee. On a really good day I don't feel anything except some discomfort when i haven't peed for a while. Today was a bad day and my belly was swollen a bit and I have the whole 9 yards. Yesterday was almost normal until evening. UP AN DOWN...agh!!
I hope you get that baby sooner than later! I just had my 3rd at 36. Just think about how healthy that little one will be with a super balanced mom! (mum)LOL
Delie- Sorry your bck to feeling bad after feeling good. Thanks for the recommendation. I try to meditate a bit every day but it doesn't always happen.
I made an appointment for Tueasday so I can talk to her. That should help. SO much is about expectationa nd letting go....
Deir
I am not sure how to answer how "severe" I was. I think Matia said I was a mild to moderate case. My main symptoms were peeing around 40 times a day, burning pain, urgency, ... you know. A good day was going around 25 times a day. Sorry, I tracked my progress with how many times I went for awhile. That got too depressing and was messing with my head, so I stopped counting about 9 months ago.
I went to see Matia when I was 24. I had symtoms of IC since I was 13. It got worse when i was around 16, even more worse after I got married then was all out terrible after I had my daughter. I don't think just having a baby made it so bad, but just the stress and added medication for severe postpartem depression. I honestly don't know what it feels like to have a normal bladder. As long as I can remember I've "felt" my bladder, and had to pee a ton more then anyone else, and at times was in horrid pain where I wanted to die. Anyway, this could turn into a book.... : / Sorry.
I don't think Matia tells everyone it will take a year. Or at least I hope not. But I do think she tells a lot of people that. Thats why I think you need to be very honest with how you feel to her. I remember asking her at my first appointment point blank if she thought my case would take years and years, and her shaking her head no. I try and hold on to that. But maybe I shouldn't. I struggle with why she would tell me it would take year, when I had it for so long. But she is only human, and I want to move on from any time limit!!
I can't deny all the things that have gotten better! But that didn't start to happen until I was about a year in. It is hard to still have to pee all the time, and feel pain. But I know the pain is SO much better then it could be, if I were on drugs and eating without the knowledge of what I should be eating.
Hang in there deir.
Hi Deir (and other wonderful
Hi Deir (and other wonderful IC ladies;)
I have a couple theories about this crazy disease and how it manifested in my body....yes, it relates to you, Deir;)
The onset was in January of 2001 and it progressively got worse for the next year with mild waxing and waning. After it reached it's "peak" it progressed no more and actually began to get better slowly, but surely over time. I had my first daughter two years later and felt worse, then got better. Ok... this is where this story begins to apply to you....lol.... after I had my second daughter, I felt a huge hormonal shift with breast feeding. I love breast feeding and was able to go for quite a while with both my girls, however, I did not realize the HUGE demand breastfeeding makes on your body, hormone levels, adrenals, AND all that connects to receptors throughout your body.... where is one of the largest spots for hormone receptors you ask?... your bladder. The breast feeding was important for me, therefore I did not stop when my IC was fluxuating again.
But, I realized that while I was breast feeding, I was placing a huge demand on my body and would probably not begin to heal quickly while I was still doing so. Certainly, you can heal and WILL heal, but the key for me was realizing how MY body functions and it reacts very strongly to my normal hormone ebbs and flows.
After writing all this, I hope you are still breast feeding..... otherwise, my point is completely lost;) You will get better!
As a side note.. When I asked Matia how long she thought I would be in treatment she told me she would have a better idea after we have worked together for 3-4 months. She did not give me a time frame. I bet I will be at this for awhile. I think after 11 years of inflammation I have quite a few layers to uncover;)
We are in this together,
Katie
Hopeful- thanks so much. I am
Hopeful- thanks so much. I am so sorry you have suffered for so long with this crap. Ugh. You'll get there. reading what you wrote makes me realize how much I truly do believe in this treatment. Thank you . I hope you are one of the ones who see a huge improvement around the 2 yr mark.It seems like some people stay at a certain level and then seem to make exponential improvements at a point. ((hug))
Katie- thanks about the breastfeeding. yes we still are and I don't want to wean Nora because of course I want her to have the best gut health she possibly can! She's already shown some possible gut issues which is another one of my HUGE stresses.Thanks for reminding me that the hormonal shifts could be playing a part for me! She is 19 months now though and only nurses 2 good times a day with an occasional snack. Katie- I am glad to hear that Matia told you she wasn't sure. That makes me feel better! AND I hope you feel amazing in a year! I've never thought I had something that I would be hoping IMPROVED a year from no and be happy with that. sigh......
(No subject)
Little update- My mind done
Little update-
My mind done got right! LOL
No, actually i really do feel like I have turned a mental corner some how. Not even sure how to explain it but it is like I have finally accepted that this is really happening to me.It only took about 11 months! LOL
I talked to Matia today and she said something like these first 6 months have not gone exactly as she had hoped and now she feels like I am at a point where she thought i was back in May. She does not have a crystal ball but thinks it will be more like 2 years for me. Ahhhh. That is actually a huge relief to hear. It may sound funny to say that but I feel like-"Ok I am not crazy- I will get better but it isn't working out like we'd hoped" My last appointment she mentioned that with some people it is like opening a can of worms and I happen to be that lucky person! I'm mad that I'm not the super patient that I wanted to be (I always have to be the best!LOL) but you know I feel so much more in control now because I can let go a little more.
For those of you who are new patients- don't let this discourage you. There are things that are better for me- my periods are every 28 days, my skin is clear and I look so healthy. My PMS was shorter this past month too. These are all signs that my body is healing. I think we are all so lucky to have foiund this site and Dr Brizman. I feel so grateful about that. In the winter, I was still trying so many things to get a tiny bit better buying supplements, trying different elimination diets, reading my head off on the internet. Horrible. Thank God I found this site. She is not a magician and sometimes things come up that are in a way unexpected but I know I am in good hands and better times are ahead.
Also- Katie- she doesn't think the nursing is affecting me at this point except to make me a bit more dehydrated.
I'm so glad to read this, I
I'm so glad to read this, I know how you've been struggling and I've often found it so hard to say something helpful since I'm one of the ones who has done so well in the past 6 months. I do feel that mentally accepting this is a big part of it, I know in the beginning when I was suffering, my anxiety was through the roof! Stress and anxiety are killers with this disease. Peace of mind will get you far, I hope you turn a corner soon on the bladder discomfort and can move up on the food list!
thanks
thanks Tinkerbell!!
Christine- You know I am a perfectionist and I am jealous of you- You're like the girl who beat me for Homecoming Queen in High School! LOL Totally kidding. When I started I thought we were kind of on the same path but that shows how much I know. I think the PIll really did me in.This is all a learning experience and part of it is accepting that I really don't know all that much. I feel like I have been kind of stripped bare and now I am rebuilding. Before i went to LA, I would read the scarier posts here and feel sorry for people never thinking it would take me a long time to get well. So when I started having all kinds of crazy reactions suddenly the scariest posts all applied to me. I've had to work through many emotions and fears that I didn't expect.
The thing is my day to day life is not that bad. SOme days (nights usually) are pretty nasty but most of time- I can do most of my normal things (besides eating, sex, and dancing) It's the fear that gets me. I'll be going along ok and then the bladder starts up and all I can think is'Oh no- she was wrong. I am worse than I thought I'll always feel like this" Suddenly my perception of pain and discomfort is ramped up a notch and everythiugn seems impossible- the kids, my house, my career. So, having a realistic picture about what has been going on with me really helps in every way.
Hang in there everyone.
deirdre
Hey deir, sounds dreadful to
Hey deir, sounds dreadful to say I'm glad she says it's going to take longer - but I know you'll know what I mean! I think it hugely takes the pressure off and allows you to deal with the day to day, and not put too much emphasis on the timeline. It's so hard not to try to keep score with this, isn't it?! So so so glad you're feeling mentally stronger. You and I are so similar in our outlooks on this I think - I totally get where your head is. So it gives ME hope, that you're feeling more capable mentally - you're inspiring me to address my own mental state!
Hey Deir, I had a phone
Hey Deir, I had a phone appointment today too! Wonder if we were right after one another?;) I am so glad you updated this thread and that you are doing better. It's funny, but even though so many of us have never "met", I will stop in my day and wonder how "we" are doing? All the way in the UK, too- Yes, I mean you Sarah and Carole:) It truly is incredible to have found this little community where we are able to openly discuss some of our most intimate fears and physical problems so comfortably... what an incredible relief!
I can imagine how much better you feel having an up-to-date discussion about the timeline of your IC. I have never asked how long I would take to heal, but I have a feeling it will be a couple of years. But, I am finding that I am reaching a very livable plateau very quickly and think it will be the "extra" foods and random flares I will need to work on more than the day to day. Does that make sense?
In regards to healing "quickly".... Although it would be wonderful to have things come easily and recover quickly, those hard won are often more treasured and appreciated. I chose to think it is a sign of character and endurance to stay the path although it is a bit more bumpy than planned;)
At least, that is what I say to myself to feel better;)
Thinking of you,
Katie
Katie, I TOTALLY agree -
Katie, I TOTALLY agree - think about you lot all the time! Kind of lovely thing to come out of this grim old illness - a community of people from all over the US and Europe, whose lives we would have been completely unaware of otherwise. Healthful, healing thoughts to you all xx