Interstitial Cystitis an Chronic Pelvic Pain: Helping You is Helping Me

Okay, so it is way past midnight, and this is way overdue. Writing a blog and a book about Chronic Pain has been on my mind for quite some time. This is a huge undertaking, but I know I must do this, and I know it is the most important thing I will ever do. I know if I have a blog, a deadline, something to report to and sign in for, like the good academic student I was in college, then I can document this journey. This is a journal, open wide for all of you to see. I hope you and I can travel together and find our way through chronic pain together, brainstorm and go through these things together. I know we need each other...
It is time...time for me to reclaim myself, once and for all, to make this my greatest project ever...to come into my own as a writer, as a woman (who also needs to lose 120 pounds...I am doing a separate hiking blog!) and as someone struggling and grappling with the every day horrors of chronic pain and Interstitial Cystitis. However based on the lack of reception or welcoming I have had from many in the IC Community, I choose to make this more a about dealing with chronic pain in general, but with a focus on Interstitial Cystitis/Chronic Pelvic Pain/Painful Bladder Syndrome (a different name for the same thing) , and talk about it in the spiritual sense. When I say I have not had much welcoming, it is because of how badly I have been treated by doctors and other "leaders" when I tell them I do not believe in a 20 to 30% "success" rate with Cystoscopy with Hydrodystension or other forms of what I feel is extreme forms of inflicting pain on those who are already suffering pain. I have been banished from the "IC" and chronic pelvic pain specialists b/c they have only met me with disdain after I tell them there has to be another way, more answers, a Naturopathic route, which I am traveling. I have contacted authors of IC books who turned on me after reaching out to them for help which was shocking and the only conclusion I made is that this happened to this person by the IC Community too and she felt the need to do it to me. I was desperate and needed to reach out and that is all I did...bare my heart and soul about my pain and humbly asked for help, and I got backstabbed and hurt, which made me realize I am going to write a book and a blog and I am not going to turn ANYONE away who wants to talk about Interstitial Cystitis, Pelvic pain and Painful Bladder Syndrome.
Today, the burning and the pain and the spasming got really bad, but I thought about you...the invisible person, the person I cannot see right now...who needs me to share with you, who needs me to bare my soul with you and tell you what I have been dealing with...But my cats want me to go to bed and I will officially write more tomorrow...But I will say this...
Especially for those with pelvic pain, we feel fragmented. Our notion of our own sexual identity is on the brink and whatever it was before does not matter, because all of a sudden, we can no longer be intimate. We are done until our problem goes into remission or gets resolved. Ihave a beautiful husband and am not able to be with him...b/c of the ongoing saga of my pain, much of which the doctors are still looking into.
But in general, we are fragmented, compartmentalized and if we are not already on disability, we feel disabled inside. Maybe you are one of the lucky ones in remission and you have much to share with the rest of us...Please do! I am no professor, but I did get an English degree and I plan to use it by writing and documenting this struggle. But we need to live our lives, fight for our lives and fight to live a life that is worth dignity, healing and respect. I am on a path of healing and hope you will come along...to follow will be my story...Next Post: Where I have been, What Happened to Me, and Where I am Going...