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What do you say to someone who is only 35 y.o. who had her bladder removed because of IC? She is going on full disability loosing a lucrative career. The pain didn't go away, unlike it was expected. Just sharing a thought....
At least we have a chance.... Keep on keeping on...
Wow
It breaks my heart
That is terrifying. I am so
That is terrifying. I am so grateful that as you say- we have a chance.
Just being here I am so much better off!
We are living right now with more or less symptoms, more or less ability to function, but none of us are on a portfolio of debilitating drugs. (at least if we are, we are tapering, not adding) And I really have not read any posts about people in this treatment getting permanently worse to the point of needing to have their bladders removed. I don't think any of us will EVER be there!
If we don't excel at health, the only other option is disease.
I wonder if Dr. B could still
I wonder if Dr. B could still help her reduce the pain? Obviously there is more than just compromised bladder tissue causing pain. Just a thought, and I don't know the answer. I am so sad for this woman.
I only found about about details after the surgery because she reached out to me for advise how to cope with pain. I communicated with her several times via email. She is on heavy narcotics, that might be the reason why she never replied. I doubt she makes decisions for herself any longer. I am not sure how supportive or open her family is. From what I understand she doesn't leave the house much.I could not really reach her conciseness. Afraid it is too late... unfortunately.
Blondy,
Blondy,
When you speak with Dr. Brizman again, I would ask her if she feels she could help her in anyway at this point. My belief is that you begin where you are and try to build improvements on your only foundation.
It does break my heart that she may have been offered better choices. But I remember clearly the pain, confusion and suicidal thoughts that I experienced for around 6 weeks straight beginning last December. It gives us more reason to be grateful to Dr. Brizman for her single dedication to helping us heal. I don't know where I would be without her.
Sue
I've read about that surgery,
I've read about that surgery, and the fact that its still being used just reminds me how stupid our medical system is. There is zero evidence that bladder removal actually relieves the pain!
Yikes. I feel so sorry for her. : (
Wow, I do wonder if Dr. B
Wow, I do wonder if Dr. B could help her, at least somewhat. Since IC isn't really 100% about the bladder anyway, maybe she could help her rebalance as best she can, given the circumstances. How sad. How isolated she must feel.
If we don't excel at health, the only other option is disease.
That is frightening and
That is frightening and depressing as anything. It makes me think of how desperate I felt when I realized I had IC, and I would never wish that on myself again, or on anyone else.
May we all be well.