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I hate to complain on this lovely mother's day with my husband and two beautiful boys...on the other hand this mother just needs a place to talk about the rough time with the bladder. I'm grateful to have a place where everyone understands. My husband has been so patient, encouraging and supportive, but doesn't really know the half of it the way you all do.
I have been going through protocol changes for weeks. In the last week its been daily. In the last 6 weeks I've had maybe 2 days of some relief from bladder urgency.
Going to the bathroom has become a thing for me--I sort of dread it. I look forward to the relief I will get emptying the bladder, but the sadness sets in as I'm less than 20 steps away from having gone to the bathroom and I feel like I have to go all over again. It's taking up so much of my mental energy, I'm getting so tired of it. I'm trying to be so patient, finding the right herbs, etc.
But sometimes I get so confused...am I even supposed to feel relief from the urge while rebuilding/cleansing? I get confused as to when I should let Matia know that the latest combo isn't providing relief. I don't ever know if the combo just isn't working or if it's die-off, or what. And to answer Matia's questions accurately. Is it a little better, a little worse? Does it feel better or worse after eating?, etc. The changes are so subtle, I don't know how to answer the questions. And I worry if I can't answer them accurately, it won't help her and she can't help me. This all takes so much energy every day, and it's hard to concentrate on everything else in my life. I'm trying to be in the moment, but even that gets tiring after a while! The energy it takes to keep positive, focussed, etc. I'm also praying a lot.
So I find that I want to avoid going to the bathroom, to put it off b/c it just brings up the sadness and frustration all over again. But that's probably not good, holding urine in my bladder? I don't even know, I feel like I'm constantly guessing and trying to figure stuff out with this condition.
I would like to read Matia's dissertation, but I'm trying to save any money to go towards appointments and supplements/herbs, but I think it would help to read it. Has it helped others to read it?
Last night I went on a date with my husband. I felt so sad because so much of my energy went toward thinking about my bladder. The urge was really up. The restaurant was so challenging with trying to avoid every little bad thing that could go in my mouth. Then we went to the movies, my urge was so up there, but then as soon as we sat down and the movie started, it lessened and I really enjoyed the movie (grateful for that). Then when I left, it came back up. Also confusing--how much of this is my emotional stuff? how much is physical? I've been doing a lot of emotional work, especially around my mother, who died last year of illnesses due to alcoholism. I totally fit into the theory about not being nurtured/mothered by my mother. I'm working on letting go of all that and having forgiveness and compassion for her, as Matia mentioned in her recent blog.
Well, this is getting so long. As of this morning, I'm thinking that maybe the urge IS better than it has been for the last week. But I'm afraid to say it! b/c it seems like just when I do, then it goes up again and I'm giving Matia false information. Oy, this condition can make me crazy. I will try to hang in there for today and see how this recent combo goes over the day before I email her again.
It has been hard to take care of two children under two with this condition. I wish I had more time to rest. At the same time, the children have helped me to take my mind off my bladder many times...they remind me that this too shall pass, I will be better, and in the meantime I can still try to enjoy life as much as possible, and that it won't hurt to try to stay positive and focus on all that I have in my life. That's one of the lessons of this condition. I've taken my health and so many other things for granted that are precious.
Thanks to you all for being here to *listen*.
Camille in Chicago
woes
Camille,I feel your pain! It is soo confusing- sometimes I struggle to put into words exactly what is happening inside my body. The changes are very rapid and its tough to keep up with what is going on. It seems that a ton of chaos in our treatment is necessary- our body is dealing with sooo much all at once and beginning of treatment for me seemed all over the place. I was very concerned and sometimes still wonder- am I giving Matia the right information? the good thing is that in TCM- from all the things youa re telling her to the best of your ability and awareness is she should be able to make out from the chaotic changes you are experiencing the patterns of disharmony that guide her choices in herbs and etc. first of all - don't be so hard on yourself! you are anxoius like everyone to jsut be done with it I know I am- but maybe in the beginning she tries to minimize the frequency as much as possible but it may be that it is more common right now. it will go away as will the discomfort. I have found over time that I jsut got better at interpreting my body changes as well as my body stopped bouncing around so unpredictably- I inched forward and maybe I didn't always report as accurately as I could have but I strived to keep good notes to read to Matia and wrote down other things that maybe could be indicators of what was happening - other clues. ie. one time I got severe pain/cramp so bad I was lame for a few hours in one little teeeeeny tiny spot in my foot. I looked up the location and it was on the gallbladder meridian right on a acupuncture point. I told Matia and thought it didn't mean anything to me it may have given her insight into my condition and actually pointed out a positive aspect of healing taking place. that's a bit convoluted but you know what I mean right? I dont' have frequency as a symptom with my IC but I have had it before in the past so I know the sensation and horrific drain it is- terribly sorry you are dealing with an increase in this! do the best you can to keep good notes and go with your gut on alot of the sensations- somtimes I feel around in the dark and its subtle as can be but note the changes and od your best to tap into how to desribe things- I describe things to Matia and thinkWOW I bet she has never heard of sandpaper pain in contrast to last months "hot iron coat hanger in the urethra pain"but somehow she gets it and what is utterly confusing to me actually has meaning to her. somtimes it will be better sometimes its worse- its normal to be all over the map at first. even that is a clue somehow. I imagine maybe a very slow picture forms for Matia out of our myriad symptoms and a direction emerges? not sure - it may be different for each person. all you can do is do the best you can for now and know that with time the chaos in your body will get under control - you'll inch forward by the benefit of the diet and something will click with a formula for a while and then it will change. stay flexible and ride the waves best you can. the positive benefits of the herbs will manefest more deeply in your body and it will get easier to feel what is going on. thanks for reading-Mary
i know exactly what you mean.
i know exactly what you mean. i am in a constant state of feeling like i'm making no sense when i try to describe what i'm feeling to matia and i always think "how can she possibly decipher anything out of what i'm saying?" but somehow she does which i guess is testament to her knowledge and experience. it's so tough because the changes are ridiculously subtle, symptoms are up and down all the time, there seems to be little rhyme or reason to what sets me off or makes me feel better, so when you sit down to tell matia what you're feeling it's like trying to make order out of chaos. at just about 6 months in, i honestly don't know that i can say i am any better than when i first started. i mean there are things that are better - i didn't spot before my period this month for the first time since going off the pill last year, my energy is definitely better, i haven't had a cold through the whole winter (last year i had four bad ones in four months), my ibs type symptoms are mostly gone, i have significantly less discharge then i've had for years (didn't even realize it wasn't normal before), and i've had some VERY brief decent spells here and there with my pain. but, any real progressive improvement in my pain - the pain i really want gone (vulvodynia)?not really and that really upsets me. how could it take this long if it is really working? shouldn't i be feeling better in terms of my pain by now? i mean it's been 6 months for goodness sake! and my husband just mentioned today that it's been 6 months already... i could see the doubt in his eyes when he said it and that made me feel worse. like, maybe this really isn't working if 6 months in i'm still struggling so much. but, if you read the success stories and the posts that people write here, one theme that consistently comes up is the very slow, very incremental progression of this treatment - as well as the chaotic nature of symptoms in the early stages. i can see why my husband doubts, why people don't get why i am still not drinking alcohol and am eating a very limited diet if i'm not seeing much change in my condition. but that's why it helps so much when we share our experiences with eachother here - the good and the bad. for example, if i ever try to explain the "sandpaper" feeling to anyone else, i know they have no idea what the hell i am talking about. but, here you are mary describing it in your post and i know exactly what you mean. i hate that we both know this feeling - i hate it more than anything. but there is comfort knowing that someone on this planet gets it. and i guess after many years of hearing this kinds of desriptions matia gets it too, so i do think that despite how odd and all over the map our descriptions of things are, she does somehow understand and is able to use those descirptions to move us forward. i just think we are on a really unique journey but at least we are going through it together. and, ultimately, we will all get through it together.
length of time
This is such an individual thing- it varies across the board. Again and again people doubt- their progress is so little that they feel they can't trust a beleif that the way they feel now will change and to imagine times and a present state out of pain seems like a dream. I had to break myself of the expectation that I was going wake up and IC would be gone or at aleast significantly improved- my improvement has been overall gradual with some jumps in improvement here and thereand also some seeming steps backwards. It is hard when that proof remains to be seen by friends and spouse. Its bad enough being aleinated by the cultural breaks in food and drink but to not get the benefits you desire within a time frame- 6 months! that seems like such a long time but truly it is and it isn't. some folks it took them one year to even notice any significant improvements- not to be totally well in one year. and truly for me at least it seems like a lot more improvement that I can see or feel has happend in the last 6 months. the last 2 months especially. the changes you have expereinced are signs you are making progress towards the bigger goal. more progress awaits- keep it up!
What en excellent post! I
What en excellent post! I ditto everything that has been said. I'm currently trying some of the dietary changes (list 1), going off some medications and doing acupuncture and herbs all at once. One day I'll feel a slight improvement and the next I'll feel horrible again, with bad frequency and burning, when I think I've done everything right. Sometimes I'll look at my journal to see what I did on the day I felt pretty good. I'll copy everything I did exactly and have a bad day still. Oy! It just doesn't make sense. And how do I know if I'm feeling bad because I'm actually regressing or feeling bad because the healing process is actually working and the toxins are getting out and the acupuncture is working?!? How confusing is that? I'm so grateful for finding this site. I spent an hour trying to explain all this to my Mother-in-law on the phone. Bless her heart, she's a great listener...but I know she just does not get it. My husband is so patient and tries to understand. I know he must be confused why nothing seems to be working for me either. If we only knew the root cause, we could fix it. Again, there is so much we don't know or understand. I'm trying to attack it from every angle I know how: dietary, emotional, physiological, stress management, muscleoskeletal, etc.....what else is there? Nothing seems to be fixing it! I feel exasperated from all the hard work and constant energy being put forth on my bladder. If you took my bladder out of me, I wold feel amazing, look amazing, and be completely stress free and happy!
It's like I have a full time job (I'm currently not working) and sometimes I wonder if being home is making things worse as I can focus more on my symptoms and urgency and frustration with the past year of IC! Sometimes getting out and being busy can be a good thing it seems. So here I go, off to yoga, then physical therapy, then psycotherapy then acupuncture! And in between I'll eat a couple cucumber slices and some grilled chicken with no taste! Oy vey! It never ends. I would not wish this on my worst enemy. The only thing that reassures me is that this isn't life threatening and there are many people in a lot worse shape than I. I thank goodness I'm not stricken with some terminal disease. Some days, though, it's hard to see the bright side.
I, too, am trying to save money for treatment and would l ike to know if I need to buy Matia's dissertation? Was it very helpful to most? I'm intrigued. I keep telling my urologist to look at this site and to contact Matia but she doesn't seem to do it. I wonder if I gave her the dissertation to read she may come around to some really helpful information for her other patients with IC. I'm trying to help bridge the gap so more people can find this site and get support from it like I have.
Have a nice day!
Flygirlsam
Hi, I would definitely buy Matia's dissertation. When she described the causes of IC, my story could have been used as a model of how to acquire IC. Her dissertaion opened my eyes and gave me hope. Regarding the expense of treatment, I would suggest making any sacrifice necessary to make it happen. My husband is a full time student and I am not able to work due to severe IC. I am stopping all other treatments (excpet one monthly appointment with my general practitioner) in order to pursue Matia's program. This is the only place where people are actually recovering from IC. I would advise joining the next support group meeting by phone. Matia has an amazing personality and is highly qualified to treat this disease. The women in the support group sound so happy and full of life. Best wishes as you work to overcome IC.
Patience
I use the ICAMA for information, but many more times I browse the forum topics/stories just to get myself through the day. I can also completely relate to describing things to Matia- sometimes I just don't feel like I'm doing a good job, but I trust she can put it all together to turn into some coherent something because I sure can't! And Camille, I, like you, seriously struggle with urgency. I'm guessing I'm a moderate case, but when I first got sick I had to pee 24/7, drugged myself to sleep which, even with vicodin/xanax, only gave me maybe 3 hours a night. After 2 weeks of no sleep I felt like a zombie, and my brain felt like scrambled eggs. Urgency...that feeling, ugh! I completely understand. I would also hold my urine and then wonder if I was harming myself, but I couldn't bear to go sit on the toilet 10 minutes after I'd just been there. I almost wanted to just put on a diaper, but obviously my dignity wouldn't allow that to happen :) And now, in treatment, I think I am making progress, but the urgency is still there and I have a feeling it will be the last symptom to leave. Some days I feel worse, but some days I go 3+ hours without peeing and am totally amazed! This doesn't mean no discomfort at all, but hey, 3 hours! haha. There is so much hope here and I am so grateful for everyone, their honesty, kind hearts, and openness because most times it is the only place I have to go to get some sanity back. No one truly understands all the emotional/physical/social tolls IC takes on an individual except those experiencing it. At 22 I battle jealousy of others my age, out and about free to do whatever they like while I sit feeling like I'm 90 and can't get up because my muscles are so weak and my mind exhausted. Today, sad and frustrated, I needed to be reminded that everything is baby steps and the greatest thing of all we need to have is patience. It is tested daily, but we are all here sticking it out, seeing it through until the end. The strength it takes to go through this is not fully recognized by many, so I just wanted everyone else to know that they are amazing, unbelievably strong human beings. No one should have to go through this experience, but we all grit our teeth and fight through because we will end up once again with happy, full, and most importantly, HEALTHY lives! I love the book "The Alchemist" by Paul Coelho, and have a book of quotes from his writing. I thought this would be a good one to share:“Therefore, however difficult it may be, I must accept today’s small blessings, even if they seem like curses, because I am suffering and it’s a beautiful day, the sun is shining, and the children are singing in the street. This is the only way I will manage to leave my pain behind and rebuild my life.”It's all about the little things :)Whitney
WOW!
Whitney/ Nicole/ IC hope/Natasha/Angela/Kriste/ToreyG all my regulars out there that my brainfog might be spacing ok-all contributors in thought and word to ICAMA, You guys are blowing my mind with all the awesome things everyone of you has shared today specifically and overall so much genuine good energy love and support! My life is enriched with the wisdom practical and spiritual ideas and dang the compassion poured out from hearts and minds today and everyday here. It is so so so awesome! It's part of my healing to come here- no doubt. As much as it sucks to be going through all this illness I am touched to see proof of humanity's high potential expressed at this most pure and heartfelt level. There was a time when I was surrounded by so much negativity and life seemed cruel and scary to me. In that state of mind I attracted so much more crap and it was hard to see those little things I appreciate so much now- much less the big and abundant positive and wonderful things I have in my life at this time. What a difference- how amazing that our experience can change so much over time. Just lik eour bodies that are improving day by day! It will happen. My confidence in this is growing all the time. I am trusting my body for the first time in years. The little things add up to a big picture and its really something beautiful and hard to describe. I just wanted to express my awe and appreciation for all of you. Sanity saving indeed. It is part of my nourishment to stay positive to come here. Whitney: I know what you mean about feeling jealous about all your friends who have not a care in the world- after doing this a year what's really funny is that the respect and curiousity I get from friends about how I eat and how I am living my life- Its like they are becoming kind of attracted to my lifestyle and want more nourishing and balance. they are feeling their rock n roll/decadent lifestyle catching up with them. They will come to kick it with me and learn about how to care for themselves better- trade in the beer for tea and downtime chilling instead of the same ole party. I'm hoping when I'm better I 'll be able to balence out all this mellowness with a bit more excitement while gracefully maintaining my good habits! ;) In the end I'll be running circles around my 22-24 year old homies- I'm 31 years old about to be! so will you! After of course the worst parts of diefoff and treatment I'm getting to a point where I have the energy and my pain levels are lower so I can let go and have a good time after I used to feel really bitter about not joining in the fun- or at least I'm also getting to point of feeling good enough to enjoy myself without the pain shattering my focus and conversation and mood. Life is getting fun again which is something IC can kind of diminish to a point. Or at least forfun simply shifts or changes in meaning. It will come back-your energy your mood your health but it will be exponentially better and then you got the rest of your life to enjoy it. BTW- thanks for the recipies- I'm inspired by your kitchen skills. Peace!Mary
Whitney thanx for book suggestion
I love when people mention books they've read that really give them understanding, support or even just a laugh as related to dealing with chronic illness & general life challenges. I'm a big reader and love getting good book recommendations from others, so everyone keep in mind if you're reading something good and apropos to share it!
Camille
I just read this, and I really relate to it right now, 4 months in treatment. I know you are a lot farther now..Has this gotten any better for you?