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Hi Ladies, Although I do not post often (anymore;) I feel as though I "know" most of you and it is within that spirit that I would appreciate your opinion/experience......
I am two years into treatment and doing tremendously better than when I began treatment. However, I recently have reached a sort of plateau in healing/ or even a slight regression. Although I am approved for list 5, I am still judicious in what I eat. So.....,
Have you experienced a plateau in your healing process..... especially those further along in treatment....... and then moved through with further healing? If so, I would love to hear your experience.
Thank you;) Katie
Hi Katie,
Hi Katie,
I was actually thinking about you the other day - wondering how you were doing. I was also actually wondering somewhat the same thing about myself in regards to how long I'd be a patient - what improvements that I'd seen of late - feeling a bit like same old same old. For myself, a horrendous UTI-which I finally caved after six months and took antibiotics for-put a bit of a spin on things - set me back just a bit. I'm beginning to feel like, for myself, that I may never be officially "cured." Sometimes I feel a bit scared and disappointed by this. However, when I remember that I no longer have horrendous pain, just occasional warning discomfort, that I can eat everything accept the things that I'll have to avoid for life, I find comfort in that - on a good day :).
So, I guess like you, I also wonder about that "further healing" thing.
Take Care
Denise, How have you been?
Denise, How have you been? Perhaps we will not find the allusive "cured" and yet somehow I think that is alright. Maybe it will force us to remain vigilant;) ( I am having a positive moment) That anxiety is a real animal though..... It still creeps up on me at times. I know you understand that. Is the pain of the UTI relieved after the antibiotics?
Katie
Hey you,
Hey you,
For six months I so tried to avoid the antibiotics - according to Dr. M I had one of the wors ,herb resistent UTI's that she'd ever seen. She was really worried that antibiotics would severely effect my anxiety. So, I hung in there until I just "felt" like it was time to cave. I e-mailed her after I started them, she accepted my decision as she always does - gracefully. However,she was pleasantly surprised that after I took them I didn't have some heavy duty consequences. They quickly got the UTI under control, two days after the meds ended, a bit of discomfort started, and Dr. M put me on some more antibiotics herbs, which continued to clear up my urine. I have been pain free, again, for several months. Over those months she cut that in half, and yesterday I discontinued them - am hoping that I won't have to go back on them.
Take Care - love hearing from you.
HI Katie,
HI Katie,
I'm like you, a little over 2 years in and all I can say is for the past 8 months or so I have been on list 5 and yes it has been very slow in showing progress. I have many days of feeling no symptoms but still had bladder awarenes around period, ovulation and high stress. This past month for the first time I had no symptoms before my period or ovulation and I had no cramps at all for the first time. Also the past two weeks or so has been the longest stretch for me of feeling basically normal. I think we will all get there, I just think it goes so slow at the end. I honestly feel 95% better most of the time and I am sure in a few more months it will finally be 100%. But like Denise says, feeling like this and being able to eat list 5, it's still WAY better then where we started!
Christine, Hello! You have
Christine, Hello! You have experienced much success! I remember being amazed at how quickly you were able to get out of pain. You are correct.... We are so much better than where we began;)
This is so funny, I've been
This is so funny, I've been feeling the same way lately. 2+ years into treatment and am hitting a wall this week. I think I am overdoing it and am exhausted. It's reassuring to hear this is a common experience. I'm still on list 4 and feel like I've backslid lately. I really think it's the outflow of energy that happens in summer and we're so close to being "normal" that we want to act like those in perfect health even when we're still delicate. I feel like I exhaust myself more easily than others and then my bladder acts up.
I've been a bit down about the regression but keep reminding myself that Nadia had something like this happen to her as well, and that what is a regression now was the former normal for me. So it's all relative. However, I feel comforted to know that I'm not alone! Not that I wish pain on anyone else! I wish I could say I've gone on to clear this healing hurdle - hopefully in the next bit of time.
I'm really trying to come to a place of such patience and acceptance of who I am and how I need to live at this point. Life has certainly not been what I had hoped for the last 4 years but hopefully the compassion and realization I've gained from this experience will be of service in the future.
And Katie I think of you often - not only because we've been in treatment about the same time but because I never made it to Vermont to check out that bread you were looking for! (Maybe you've forgotten but I have occasions of kicking myself for not telling you I never went!)
Best wishes to all of you!
Claire
Hey Claire! Are you still
Hey Claire! Are you still involved in teaching art? No worries about Vermont;) I do remember our Against the Grain Roll discussion, but I figured something like a trip cancellation must have happened. I ended up ordering the original flavor though my grocery store and love it- the trick is toasting the hell out of it.
You sound as though you are in an incredible place of acceptance and patience. The spiritual journey of this illness is certainly life changing!
Hi Katie!! List 5... wow!
Hi Katie!! List 5... wow! That's awesome! You and I started treatment around the same time. And yes, I also had a "plateau" for awhile. It lasted almost a year, actually... I feel it started around the 8 month mark. And then I didn't notice any real improvements until about 18 months. I've been about the same since 18 months (am now at 23 months) ... just noticed a weird shift last week, but nothing to write home about. I don't know why the plateau happens, but I do know that the shift will happen at some point that will help move it along. I'm actually going back to see Dr. B in person in late September, so I'm hoping that actually seeing her again will do good things for my treatment. I was very, very discouraged during the 10ish months that I was on the "plateau." I questioned whether or not I had just reached as far as my body would go. But that wasn't true. During that time, I scheduled an "extra" appointment with her just to ask her questions and pick her brain to help me get through that time. I was so thankful that she really took that time to explain my situation to me more in-depth and reassure me that even though I wasn't feeling improvements and felt stagnant, that it wasn't actually the case. From what I can tell, it seems most people go through a "plateau" stage at some point, perhaps even several of those times. But there is another side after that. If you're feeling discouraged and can afford to do so, I highly recommend scheduling a separate "extra" appointment to just ask her questions and get more info from her. It really helped me, not only mentally and emotionally get through it, but I also discovered a few things that I was kind of slacking on that I needed to improve (incorporating a wider variety of veggies, being one of those things).
I'm really glad I came on here today to see your post! I'm also not on the forums very much anymore, but it's really good to see that you're feeling improved and on List 5!
HeyTinkerbell, Your
HeyTinkerbell, Your suggestion to schedule an extra appointment is a great one! I often feel as though Dr B and I do not have enough time to talk about my specific illness- this is a solution. It is also very helpful to hear of your experience with your plateau. How are you feeling now?
Hey Katie! I'm doing pretty
Hey Katie! I'm doing pretty well. Not totally out of pain yet, but getting there. Many moments (almost full days, sometimes) of no pain or very very low pain. A far cry from what it used to be! "Bad" days now are mostly surrounded by hormonal shifts throughout the month. Totally functional now, and so so happy and blessed to be living a "normal" life again! I still have a long way to go, but it's going in the right direction! My "bad" days now are better than my "good" days were two years ago. But I'm still totally functional on those bad days. That's all I can ask for... to be moving forward! :) I hope you and your family are well!
Oh My Ladies! It truly warms
Oh My Ladies! It truly warms my heart to hear from you! To know that you have hit a plateau gives me greater peace. I debated posting this for awhile because I have come so far and most times the downturn works itself out in a week or so but this has been different....... Longer period of time and also....that anxiety feeling we all know so well.
My day to day is a glorious return to the world of normal.... At least..... That is what I call it. All of the games I played to keep my sanity while in constant pain have melted away.... almost completely. I remember watching Sesame Street videos with Cecilia, my daughter, and timing progress based on how many songs I could sit through before I HAD to use the restroom. Now I regularly sit through those shows.,,, movies even! I enjoy simple much more than I thought possible and in this way, I will forever be grateful to IC for my life richer and hold more clarity.
List 5 is a bit of a tricky situation. It feels a little like that scene in Shawshank Redemption when Brooks leaves the confines of his prison and cannot handle all the choices. Red faces the same scenario later and handles it with success.... By listening to his needs. I realize that may sound like a stretch and by no means am I likening our diet to a penitentiary , however, our lives have become restricted and that restriction.... For me... Became a kind of peaceful boundary. When the the boundary of our diet was lifted, it took considerable effort to not make poor choices...... A little dessert here, a little glass of wine there.... Especially when the consequence is cumulative. I don' t really believe I had given credit to the psychological implications of long term food restrictions until my body chemistry adjusted. I have been successful with the diet, but it is a concscience, continual choice and I have made peace with the fact that it always will be.
I have made an appointment with Dr B for the 8th and I will report back what she shares with me.
Katie
Katie and all
Katie and all
Thank you for your honesty and insight. It is helpful for those earlier in treatment to have a sense of what to expect.
Katie when you say you have taken a step backwards, what do you mean? Or what does a bad week look like at the two year mark for you? I am at 10 months and just now starting to string together most of several days of being very low to no symptoms. So I am trying to understand where you are at? is it that you feel normal most of the time and then you have a few days per month or at random times where your frequency or bladder awareness is more apparent?
How do you keep from making poor choices? Do you occasionally allow yourself something? I worry that I will be very resentful if I cant moderate and have a glass of wine twice a month or a bite of dessert. But I am not there yet so obviously don't know how I will feel when I am let loose on list 5!
Thanks for any thoughts on this. And thanks for posting.
If we don't excel at health, the only other option is disease.
Mimi,
Mimi,
In response to your question about how to keep from making poor choices, it has been my experience that it just comes with time. It also helps me to remind myself that while in that moment I want the drink/dessert, it isn't worth it. It isn't necessarily that "thing" you want, but the experience provided by that thing, the feeling you get from it. I've tried to find things and activities that cultivate similar feelings, but in a health promoting way, if that makes sense?
At the beginning, I was very resentful and bitter/angry that I had to give up drinking and dessert. I had been the person who ate dessert for breakfast and was last at the bar, so those two things were near and dear to my heart. Over the course of treatment, I've had slips up where I had a drink (or several), and I felt so horrendous afterward that I've come to realize it just isn't worth it. Something inside me shifted, too, and I really sincerely have no interest in alcohol anymore. Perhaps I've brainwashed myself, but when I hear alcohol, I immediately say poison inside my head. Okay, I know, weird, but it seems to have worked. While I miss the social aspects of sharing a glass of wine with friends...I've settled in to my "fancy water" and am so much happier going without. At bars, sometimes I chat up the bartender and have them put water in a martini glass, with a lemon or lime, so that I can "blend" if I don't feel like sticking out on that particular night.
Regarding dessert...you find replacements. I haven't touched sugar since I started treatment. I have, however, had my fair share of agave and fruit sweetened goodies. Keep in mind, too, that your tastebuds are completely changing. Things you once thought were decadent or sweet will now be totally sickening to you. I remember the first time I tried a carrot again I spit it out because it was so sweet I was scared I had eaten sugar. Insane! So, as with everything else, with time traditional desserts will not call your name and it won't be a challenge to pass on it. Once you get to a more stable place, and talk with Dr. B about this, but she told me an agave treat (or something like that) once a week or so would be okay/wouldn't hinder treatment. Sometimes a girl just needs chocolate! I've developed a taste for 100% unsweetened chocolate. Friends say it tastes like chalk. I say, that just means more for me. :)
Hi Ladies,
Hi Ladies,
I've been in treatment for almost 4 years now. (I usually don't post because I worry I may scare new patients away with how long I've been at this, but my experience with this treatment has been nothing but positive.) Over these last few years I've gone through many plateus in my healing process. At first this was frustrating after all the progress I made in the beginning, but now I've come to just accept it as the new pace of healing. I feel pretty "normal" most of the time, so long as I follow the diet (I am List 5+, with some random things that I just don't seem to tolerate). If this was how I had to live for the rest of my life, I could do it. So, every time I make another improvement, I view it as a bonus.
This is perhaps a silly comparison, but I have a jasmine bush. At times when I become discouraged about my progress, I think about how sometimes all of the flowers will fall off and no new ones will form for two or three weeks. And then, almost overnight, there will be about ten new buds that burst open all at once. Forming the flowers takes a lot of energy for the plant, and so sometimes it just has to take a break and rest (or plateau), before it surges forth with new buds. I think my body is doing something similar. Healing takes energy, so sometimes it just has to rest before it can begin again.
Hi Murphy,
Hi Murphy,
Thanks for posting - it feels like I could have written pretty much what you just did - you've expressed so well how I feel - including length in treatment (even if you still have me beat by a bit)
Take Care
It is so good to hear this
It is so good to hear this from you girls who have been in treatment for more than a couple years. I am just over the two year mark, and after several months of improvement, had a month long flare that really got me worried. I am improving again, so my emotions are better now. I've just been super tired and achy all over. I love the flower analogy, that was so helpful!
Good Evening Ladies,
Good Evening Ladies,
This is such an incredibly helpful discussion for me. I just finished my appointment with Dr. Brizman and it truly is amazing how it reset my spirits. I often think that treatment would become a very different process if I had more contact with other IC patients in my daily routine. It simply melts the isolation anxiety to hear her say "yes, I see this often" or read your posts because a community is an important aspect of healing.
We discussed the plateau and slight regression I am experiencing and had an honest discussion about stages of treatment and where I am at. I am very pleased with the progress I have made, but because I have experiences heart issues along my path to healing, my particular route has made some unexpected turns. The good news is that she seems to have the pattern pretty well figured out and I should see progression soonish- but the jasmine bush analogy makes perfect sense- I think I am shedding some blooms;)
Murphy- Thank you so very much for posting about your experience. Please continue to do so when you feel inspired;)
Regarding how I "regularly feel". I regularly feel well, stable, calm. Even when I do begin to experience some level of pain, it resolves itself quickly- within an hour- and is responsive to a walk, bath, red meat;) The terrified helplessness I felt has melted away as well as any sort of pain that would cause me to cancel or change my plans. That being said- I do not feel " normal". When my bladder is full, it is IC full . Does that make sense? And I would say I still have some level of awareness or low pain about 30% of the time. I am at a point where my energy is stable and life is full- for that I am eternally thankful. I love being back n the classroom;)
I hope this helps provide clarity of "my day" at two years in,
Katie
Good to hear from you Katie!
Good to hear from you Katie! So glad this appointment was helpful and helped ease your fears a bit. Amazing how well you are doing, just love to hear this. May this plateau be short lived and can keep pushing along to the next level!:)
Hi Katie, awesome read. What
Hi Katie, awesome read. What do you mean by IC full with your bladder? Burn?
Hi Carey, I am fortunate in
Hi Carey, I am fortunate in that I have not had much burning, but when my bladder is full, it feels extreme pressure-quickly. I remember pre-IC the sensation of having to urinate.... It subsiding then another wave of pressure and after voiding.... Relief. Now, I feel uncomfortable with no wave... Just consistent pressure and some relief during voiding. The rest of the relief occurs 20 min or so after I have voided. Strange, right?
I use the restroom probably every 2-5 hours with occasional bouts of frequency. I can live here ..... That once every 20 ,min without relief is for the birds!!
Katie
Katie and Murphy
Katie and Murphy
WOW! Thanks so much for your insights! Very helpful. The avoiding sugar/alcohol thing for life seems impossible right now. Well, actually, sugar seems easier to me. It is the social drinking. Living in the Bay Area with a husband that has a wine cellar and loves to eat out with me.
Carey, in response to Katie's comments:
Katie I know what you mean about "IC full". I sometimes go a long time without having to pee and then have the urge and go like a "normal" person. Other times, I feel a slow increase in background urgency as I get to the 2-3-4 hour mark. My daughters don't need to pee, and then suddenly a switch is turned when it reaches a level of fullness, and it is time to pee. This is how our bladder is supposed to work and will again some day
If we don't excel at health, the only other option is disease.
Christine thanks to you too
Christine thanks to you too for checking in. Glad you are still making progress!!
If we don't excel at health, the only other option is disease.