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Hi all –– I've missed posting, and have peeked in when I have a minute here and there to see how everyone is doing.
I'm needing to reach out for support after being in my 2nd treatment for 14 months, and with 2 kids in diapers. I have definitely had some really good periods, for a number of days at a time, times when it seemed that I was going to be symptom free! –– then, wham, symptoms just come right back. My main symptom is urgency.
Just needing to connect with you all and perhaps get confirmation again that I'm on the right road. It has been SO hard with people in my life. A lot of times people have just stopped asking, which is a good thing in a way. My therapy group does not seem to be understanding/supportive of my diet b/c they just seem to think I'm anorexic because I've lost so much weight and am now a size 2. They don't understand this treatment, and shouldn't I be better by now if it's supposed to work. Many people in my life don't understand this treatment and continue to look at me like I'm a little crazy.
My urgency just keeps popping back. Lately, I've been experimenting with foods again because I am just feeling so deprived. I'm trying cheese and butter again –– that seems to be going OK, but I'm not 100% sure.
I've started trying iced tea b/c I so miss beverages besides water. Some types seem OK, but some seem to trigger the intense urge big time. I'm going nuts with the idea of sticking just to water, meat, a few veggies, rice and no oil, butter, etc.
Anybody else far along and still waiting for the urgency to fade?
Thanks for listening. Thanks for being there.
Camille
I am so sorry you are having a hard time... though I can't offer much advice, I am so new to this all. I will say I admire you! I have one little one, and some days are so hard taking care of a baby and having IC. Hang in there! You can do this, and beat this.
Hi Camille, How long was your
Hi Camille,
How long was your treatment the first time around? Last time did it just slowly
get better? Because it sounds like you are making big strides. If you are having
days with very few symptoms I would say that your are on the mend. It just does
not feel that way when they come back.
Yes, the way you describe it,
Yes, the way you describe it, I'm at a similar point (although I'm eating most foods)... I have days or stretches now of not/barely feeling my bladder except early am & pm times, then boom the urgency and belly/bladder fullness comes back... Not anything like what it was in the beginning but still sometimes very strong (though I'm sure my tolerance has decreased since the start). But I see how once we have esp. stretches of good days, a (relatively) "bad" one suddenly interrupting things feels like such a disappointment b/c you keep thinking "Maybe this time it's gone for good." So in some ways it mind-f(#%s with you, pardon my French. Like dangling a carrot and you nibble a little and then oh, no you don't... the up and back is awful although for those suffering daily without any relief I remind myself it's a much better position to be in.
My hats off to you managing this while taking care of little ones... it must be incredibly incredibly draining. You are amazing, as are all the moms. It does sound like -- as much as the process is frustrating -- you are doing a lot lot better, which is cause to celebrate alone. When I see some people relapsing or some people really struggling esp some second-timers, I remind myself I'm lucky to feel even 10% better (That said if I get really sick again god help me! hah!)... this is an incurable disease at least by Western standards, and if I get well even if it's not forever I'm "cheating" illness (ie like cheating death so to speak). I've said this before -- people w/ other chronic illnesses like MS are dealt a double whammy--not just initial diagnosis & dealing w/ pain but then the future of living w/ it forever.... they don't have the prospects that we do thru Matia's grace... we can actually recover from this, we have a chance, that's HUGE. But much much easier to say when you're feeling much better.
Louise Hay
Hi Camille
I TOTALLY understand you. It is very difficult with two children to do this. I feel like sometimes I would have more success if I could just be locked up in rehab to deal with this. Hang in there and check out Louise Hay.
So glad
I'm not alone with this. Thank you all for taking the time to respond. I have been cranking out the affirmations this last week (yes, thanks to Louise Hay --love the book and I have the video, too, "You Can Heal Your LIfe") and right in this moment I'm on my 2nd or 3rd minimal symptom day in a row. Matia did say she thought I was turning a corner last time I talked to her, so I'm also repeating those words over and over in my mind. I've been trying to introduce some things back to feel less deprived and I'm happy to say it's going OK (fingers crossed!) It even seems like when I eat a snack of plain yogurt and a few blueberries my bladder actually feels better. Alleluhiah! This is a miracle, and I have to see it for that, because it's huge. And I'm eating some butter, too! No reactions! Miracle!Thanks for reminding me to focus on the ways that I'm doing so much better and to remember that this is a SLOW process, not like going to the Dr., getting a prescription, and feeling better in a few days.