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Hello ALL,
I haven't been around for a bit because honestly I was feeling lots better and my life got pretty full. That has been wonderful. I was about 80 percent better than I was when I got into treatment. Then, about a month ago, something happened and I started having high pain levels and a lot of instability again. Boaz said that he thinks I would have been healed by now if it were only IC. He believes my liver may be at the root of this, and that somehow it got churned up and my inflammation did, as well. I also have a frozen shoulder, which is extremely painful, and makes it difficult to sleep. So though I am very positive, practice meditation, and light yoga, take walks, never cheat on the diet and go to therapy, I am feeling very sad and frustrated, and I trying not to go to that dark place. There is a persistent nasty burn off and on in my bladder and urethra for the last month. It seems to begin to fade, and then comes back. Anyone far along in treatment experience a mysterious return of symptoms?
Hi Julie- That must be so
Hi Julie- That must be so scary. I know even when I have a good week, I feel so nervus when symptoms come back at a higher level. I don't think you're alone. Many people have ahd setbacks like this and then come out stronger Keep remembering that your body had the capacity to get to the 80% level you were at and fairly quickly too! You will get back there again.
Julie, I understand. I have
Julie, I understand. I have been in treatment for 12 months. And my bladder was doing really well. Then, out of the blue, a NASTY flare started. Terrible. Worst I can ever remember. It has calmed down somewhat now, but has never completely resolved. It's been almost 4 weeks now. Just when I think it's about over, the pain ramps up again. Boaz thinks it may be my body's reaction after I had a bout with severe anemia in November/December. I just know I'm in pain and that I thought I'd be a lot better at this point. Like you, I'm really good about the diet and try to be a good patient. I know I'm not providing a lot of help, but know that I understand and am praying you get relief soon, too.
Hi Julie! Sorry to hear you
Hi Julie! Sorry to hear you are struggling after doing so well, but I do believe it is unfortunately not uncommon to hit these major road blocks that scare us half to death. I have been in a constant GB attack since September and we can't get things to shift. I've always had major GI issues, and GB pain, but this is over the top ontop of IC and everything else. It is so scary to not understand and when you are doing everything right, it just doesn't make sense at all. Many have this crazy increase in pain with a healing crisis and like Deir said come out feeling so much stronger and healthier once it passes. I hope this is the case for you! Sending my prayers!
Thanks so much for all your
Thanks so much for all your helpful comments! Cprince I have had gallbladder issues on and off too. It's interesting. When my liver gallbladder hurts, my bladders great. When my bladders off, my galbladder is perfect. Makes me think inflammation attacks one thing and forgets about another. Such a strange process. really takes a lot of faith and patience.
Hi, I have the same strange
Hi, I have the same strange phenomena.
Hi Julie, in the first few
Hi Julie, in the first few months of treatment I had big improvement, and then it stopped and seemed to go backwards. I'm almost 4 years into treatment and I had some ups and downs, but never felt as I did in the first round of improvement and the past 6 months have been very painful and really draining and I really wondered if I should continue treatment as I felt worse and was confused, BUT the past 5 weeks Matia and i have been trying some new things and this past week I have had some comfort and big improvement which has given me back my hope. I know our situations are different, but when I was aksing Matia a bunch of questions in our last appointment Matia said she has seen patients like me who seem to improve quickly and then stop for a very a long time (though I'm sure things are happening underneath, but for what ever reason it's all very deeply intertwined in me and hard to unravel), but then that patient can heal really quickly and make a big leap and then it might stop again for a while, but by then the IC syptoms are much smaller. I'm holding on to that :) I really hope you get more relief soon, it is scary to feel so much worse, hang in there. Claudine :)
Hi Julie,
Hi Julie,
Just thought I'd chime in with a little encouragement as well - I had a major setback about 2.5 years into treatment and understand how challenging it is. Dr. Brizman will get you through it but it does require a great amount of trust, patience and determination sometimes. Please know there are many of us who understand and are here to support you through this. Sometimes we have to go to the dark place, but I always find that after I let out my fear/anxiety/frustration, that I feel a bit better and can keep on going. Hang in there and keep reaching out - we're here to help you through!
And thanks for your thoughtful comment on my post last week!
-Claire
Much love to you Claire!
Much love to you Claire!
I think i am back in balance again. Much better. The frozen shoulder was what threw me off but acupuncture is helping! I am so grateful for Boaz and for all the helpful support. Grateful.
Glad you are feeling better.
Glad you are feeling better. I will have many good weeks (in tx for 2+ years) and then something in my protocol will start to bother me and we will have to take it out. I also had to play with my diet more to get my digestion improved. Lots of ups and downs. And now I got a tick bit and had a flu reaction very quickly. Saw a Lyme doctor and he thinks I may already have Lyme. Have to be on antibiotics for a month and get tested for possible chronic lyme on top of my IC. Well, I guess it is another part of my puzzle. This unwinding of chronic illness can be very challenging.
If we don't excel at health, the only other option is disease.
Mimi thanks for your response
Mimi thanks for your response and I am sorry you have the tic bite. I actually had a tick bite 10 years ago, did 30 days of doxycycline and have never tested positive for lyme. Sorry you have to have the antibiotics but thank the universe you're already with Bomamed so they can help you recover. I went for years and years adding layers on top of that. You WON'T! I wish you much love and healing.