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Hi Ladies,
Reading all of your past/present posts are so helpful. I knew when I began treatment that there would be difficult times. Somehow the theoretical and the reality are very different:) I have been on the diet since last May and treatment with herbs since Aug 2nd. In addition to bladder stuff, I am still experienced elevated heart rate, skipped beats and now this tooth pain that is keeping me from sleeping at night. Like we all sleep so easily anyway... right? It feels as though my body is falling apart little by little. Unfortunately, the herb protocol for tooth pain relief has not worked so far. I am regularly emailing Dr. Brizman and she is wonderful, but I am feeling discouraged. Especially at my heart ... we have been working on it for a few weeks:(
So, instead of grumbling to my poor husband and family I thought I would turn to ladies whom I know understand what this is like. How long did it take until you started to see things coming together? Have you had to work with herbal protocol changes?
Thanks for listening to me gripe in a moment of frustration,
Katie
2 years
It sucked for me for a long time. Increasingly weird stuff happened at inopportune times. I had trouble swallowing for an entire month TWICE--like I couldnt swallow anything really except for yogurt and veggie purees!! At year 2, I started to feel noticably better. I however cheated a ton for the first year, and now I almost never cheat. Everyone is different, so it might not be this long for you! Again, I cheated for awhile which held me back. I get discouraged still too, but hang in there.
Katie- I totally get the
Katie- I totally get the discouragement. If it is any help- I can see small improvement now and I am 3 1/2 months in. I still have some really rough days and I am still so angry that this is happening to me but when I am feeling positive, I can see that I have improved. I have read of many people feeling improvement between 3- 6 months so if you look to that you might not feel like you "should" already be feeling better. I have a strong feeling that I am going to see exponential improvements once it starts really going.
Your other problems, heart, tooth etc sound so frustrating.
Hang in there- you are on the right track!!!!
Thank you:)
Reasearchnerd- Thank you for your response and being willing to share your frustrations. I, too, have felt a strange sensation in my throat... like I am not swallowing everything I should/could. Then I cough a few times and it tends to pass. I am glad to hear that you are doing well as you begin your second year. I admire your perseverance.
Deir- Hi! I am so happy to hear you are seeing improvements. To be honest, the tooth pain and the bladder pain I can handle (most of the time) but this heart craziness has me pretty spooked. I went back and re-read some posts from "beginners" and it made me feel supported. One or two of them were yours... and it sounds like you are making great strides:) I think I am impatient with this disease. Although I am new to treatment, I have had IC 11 years and I am BEYOND ready to be done with it. I think I am learning to manage my expectations a little better:)
Thank you for responding.. it really helps:)
Katie
haha
I just started year 4. Oi vey. But, the weird stuff is way less frequent now.
Katie, before I started
Katie, before I started treatment I had weird heart flutters, it felt like my heart was missing beats then catching up. It was a weird feeling but not painful or anything. They did stop after I started treatment but about a month ago it started up again but only lasted a few days, kinda like my tooth pain. It sucks that yours is hanging on, hopefullly it will resolve it self soon. I just wanted you to know that I did have something similar even if it was only for a short time. I'm glad your bladder is feeling stable.
Tinkerbell can't wait to hear how your trip to LA goes! Good luck!
It sounds like we all have
It sounds like we all have extra problems, as if IC is not enough(!). Some people have had heart/teeth problems while others deal with muscle/joint pain. Perhaps our extra symptoms are a part of IC. Matia told me that non-directly bladder related symptoms are part of unbalanced body.
IC oddities:)
You are absolutely right!
Christine- I appreciate you sharing your heart flutters with me. And yep, those missed beats are exactly what I have combined with beating too fast sometimes. But, the missed beats (PVCs) come and go. My tooth pain is holding steady again tonight... I am keeping my fingers crossed this is a trend:)
Blondy- Yes! We all do have extra IC "symptoms". I just so appreciate having a place to vent about it where I know you wonderful ladies get it! When I spoke to Dr. Brizman about it, she indicated that the inflammation that caused my IC has gone to my heart because of the amount of supplements I was taking and the relationship to other organs. It amazes me how constantly patient and focused she it. Incredible. How are you feeling?
Katie
Katie, were you a supplement
Katie, were you a supplement junkie too? I took so many before I got sick, I thought I was doing good things for my body by taking so much stuff, I think they had a lot to do with my getting IC because I know it wasn't antibiotics or the pill.
Christine, Yes! lol... I
Christine, Yes! lol... I guess supplement junkie is a good way to describe it:) I had been working with an Alternative M.D in town for many years and actually had gotten quite a bit better with him..... before I relapsed. By the time I saw Dr. Brizman I was taking close to 30 supplements a day. I think often of how different I think my path would be now if I had found her sooner.... but, at least I am with her now!
I must admit I have had to retrain my brain quite a bit. I still feel uncomfortable not even taking a multi:) The only supplement she has me taking right now is vitamin D. I struggle to eat enough veggies at each meal so I just hope I am getting enough nutrition to heal.
Were you taking lots of vitamins before you got IC?
I was taking a bunch of
I was taking a bunch of different things but most days I took Vit D, C, E, Folic Acid, Aci Berry, Milk Thistle, Revertsol, Mega Red and probably some other things throw in every once in awhile. Now I don't even take Vit D, maybe because I had taken it for years before I started treatment, so now I try to get a few min. of sun each day to make up for it.
Poor Dr.Brizman...lol... when
Poor Dr.Brizman...lol... when I flew to LA and saw her for the first time she asked me if there were any other supplements I was taking. I pulled out this huge bag and started setting all the bottles on her desk. She stayed so calm and supportive, but I am sure she was thinking... oh my goodness! I began taking them when I first got IC and actually healed on them the first time. I had a wonderful break for about 5 years without IC and then it came back with a vengence. Up until June of this past summer I did not have any other symptoms besides my bladder.... now I do and Dr. B think supplements contributed to my IC coming back. Our bodies really should have come with a much more clear owners manual. I thought I was helping myself. Lesson Learned.
((((((hug)))))
((((((hug)))))