Forums:
Hi Ladies,
The last time I wrote on the boards I was sailing along in my treatment and feeling pretty darn good. I would have some flares here and there that were mostly just urgency and I could almost always point at something like painting my nails (even with the non-toxic safe stuff) or trying a new food on List 2 before I was ready for it.
That said, I am really really struggling now and I have been for the last two months. In September I got a call that I needed to go out of town for work for a week. I travelled back to the place where I got the "UTI" that eventually resulted in my IC diagnosis. I saw 4 doctors in that city and was placed on 4 different antibiotics before I even heard the words interstitial cystitis. There was a lot of trauma and fear surrounding my trip back there and to add onto that my work involves very long hours and I caught a cold my last day there.
Things had been a bit wonky the whole week before and the week I was out of town but I figured once I was back home and the job and the cold were over, I would bounce back. That was the last week of September and it just feels like it keeps getting worse. My occasional flares are now every single damn day. It is just urgency urgency urgency like a motheryouknowwhat and I can't seem to figure it out. Boaz has been so helpful in emailing back and forth and changing my protocol CONSTANTLY but nothing is helping. Some things definitely make it worse. The only relief I have had is when I cut out all the herbs and probiotics cold turkey - I'll get a few days of being almost symptom free. But I know that isn't the way to go because eventually the urgency creeps back in.
I have gotten so desperate in the last few weeks that my therapist recommended I go back on an antidepressant (I was on Zoloft before treatment). I have been crying and screaming every day and feeling like this is never going to end. No amount of mantra reciting or yoga or meditation or running(my saving grace through this) can tame this horrible urgency. I decided to try Elavil because of the sleepy side effect which I needed desperately. I have been waking up an hour after I fall asleep every night except for three nights in the last 2 months. I am fried and exhausted. Unfortunately the Elavil has given me CRAZY heart palpitations and I have to cut it out even though it knocks me out at night. I regret even trying it because now I know what sleep feels like again!
Through all this I have been trying to maintain positivity and look at everything with an outside perspective but I am going NUTS! How is it that I was doing so well for 3 months and then WHAM 2 months of awful? Have any of you experienced something like that? What did it take for you to come out on the other side? I keep saying "Tomorrow is a new day and it will be better," but every day feels worse! I did have some relief this weekend miraculously - I was off all the herbs and probiotics and managed to go to a party with my husband Saturday night - A PARTY!!! I felt great there and got home and slept through the night! I am taking every moment of relief I can. It is such a blessing. It's just hard to have those moments of calm bladder and then go back to turmoil the next day. I just want to get back to how I was feeling through July and August! I truly feel like I am worse now than I was at the beginning. Is there any way this could possibly just be a new level of healing when I am feeling like my heart is going to explode and I want to rip my bladder out of my body?
Sorry this is such a depressing rant. My family and friends are incredibly supportive and understanding but no one knows what we're going through more than you all. I was on the FB group as well but when I started feeling bad I felt like I was looking through the Facebook posts and just spending way too much time obsessing about everything so I cut myself off. I hope people are still reading over here!
Thank you for reading - Allison
Hey there- It sounds really
Hey there- It sounds really tough what you are going through and you are a brave and strong person even though you feel scared right now. These ups and owns really can make you feel nuts. I get it- I am feeling nuts today too. But 2 weeks ago, I was singing with a rock band. The only way I know to get throug it is one day at a time and when I waver from that- I get crazy.
You'll get through this and you will have better days ahead. If your body was responding before, it will again and better. yes- you will get through.
Hi Allison
Hi Allison
I know this is impossibly hard!!
Did you read Dr. Matia Brizman's dissertation? I found it very helpfull as I was getting into treatment. Nothing about your body is static. Everything about your body and it's healing is dynamic and changing. Healing a chronic illness is not very linear (although it can be for a few people). Whatever your body needed at the beginning of treatment has now changed. Boaz is trying to figure out what your body needs now. IC is so hard to treat and many TCM doctors can't treat it effectively because in Chinese Medicine terms we have deficiency AND excess. They wax and wane during treatment and it is hard to treat both at the same time. Sometimes exactly what you need is also hard for the body to tolerate because you have a lot of inflammation, AND your detoxification organ (the bladder) is severly compromised.
How long have you had IC?
The imbalance you have was a good part of your lifetime in the making, so balance will take time, courage, and patience to acheive.
If you tell us what you are taking you might get a bit of perspective on how some of the herbs/probiotics in your protocol effected other people if you are interested. What probiotics are you taking now?
How often are your phone appointments? As costly as it is, it really helps if you can schedule appts 2 weeks apart or 3 at the very most when things are rocky so you can get your questions answered, but most importantly, Boaz can figure out exactly what you need. I almost always have a protocol change after a phone consult which often helps.
Keep careful notes.
Are you using ANYTHING on your body that is not indicated as safe by ICAMA? Soap, cleanser, lotion, oils, sunscreen, hair products? Anything? What food list are you on? What are you eating?
As frustrating as it is you are early in treatment and can expect a lot more relief in the coming days.
(Big hug) and PM me any time.
If we don't excel at health, the only other option is disease.
Oh, oh, oh!! I almost forgot!
Oh, oh, oh!! I almost forgot!!! You are not going to love this. But it is only temporary. I really, strongly recommend that you stop running for a few weeks to see if it helps. "Chronic cardio" is impossibly taxing on a body with chronic illness. I KNOW!! I KNOW! You are going to be pissed that I wrote this and you are going to tell me that running makes you feel great (YES the endorphins are wonderful!). But trust me. I am a fitness instructor. No one was a more compulsive exerciser than me. You are producing lactic acid which is hard for the bladder to metabolize. You are depressing your immune system with cardio and in my opinion this is working against your treatment. Please, please, switch to walking for a week or two and see if it helps your bladder feel better. Pretty please.
If we don't excel at health, the only other option is disease.
Hey Mimi - I emailed you!
Hey Mimi - I emailed you!
Thank you so much Deir.
Thank you so much Deir.
hi allison,
hi allison,
sorry u going through this....but u will get through this , try to take deep breath hold for 4 to 5 counts and release slowly through the mouth for 7-10 minutes, I have seen lot of relief in me by doing this.
and also try what mimi mentioned in her comment.....mimi is great.... :D
secondly , have u made a journal of what u eat every day, if not then make a journal of 7 days of what u put in ur mouth with all the discription of the spices and the way of cooking, any thing u put in ur mouth write it down....hope u are eating organic stuff,how u eat them...and send it to boaz ....it helped me a lot....
If u already did then its fine ......it helps boaz and indirectly to us...:)
LOTS OF HEALING POWER TO YOU .....u will be alright....
regards
ranjit
Hi Allison,
Hi Allison,
Have you conveyed to Boaz the degree of your mental anguish? I won't bore you with my long and painful problems as I have an arsenal of tried and failed conventional psychiatric medicine. Some of them approved by Matia - some not. If Boaz is anything like Matia, he will hang in with you on this - HOWEVER, it was critical for me to be very pushy in explaining that my mental problems were extremely severe. There are things that can be added into your protocol that can be extremely helpful. Please make sure that if you haven't - you speak up. It does get better.
Hugs - Denise
Thank you Denise. We talked
Thank you Denise. We talked about it a lot on Saturday and he approved me going back on the Zoloft with the warning that it would complicate treatment and cause inflammation. But he was very understanding and acknowledged that my body isn't going to calm down until my mental state is calmed down. I cut out the Elavil a few days ago but I don't want to start back on the Zoloft because I do feel a lot calmer in the last few days. Maybe just knowing its an option and there if I need it is helping. And I'm with you on the psychiatric mess - I've been on and off for 10 years and always feel better on. My family has a nice strong history of depression and anxiety that I inherited. All this pain really doesn't help!