Unheard voices.

John Hopkins did not go well. Back to almost square one. At least my new pcm is prompt with referrals. John Hopkins wants me to go to a Specialist in Philadelphia before they will do a cystectomy. Very frustrated as this was scheduled as a PreOp and now the doctor is hesitating to even consider it, even though she acknowledges that there is literally nothing left for me. I hate having no control or choice over my body. I know I should be glad that she wants me to get another opinion, but she is my 5th specialty Uro in 26 months and I have had ZERO improvements. At some point the patients voice should count.
Seriously. They will not give us pain meds but they won't take away the misery organ. There is something ( many things) wrong with healthcare. I really want to go stand on the Congressional floor, name off every doctor who is complicit in allowing the Government to dictate treatment options and say Fuck You you prick bastards. If I could run a razor blade up every crotch there and dump lemon juice and hot sauce on said cuts, I would. Maybe then they would understand how bad this really hurts.

Ignorance and being ignored

Interstitial Cystitis is ignored by the medical community to a very large degree. Even mainstream medical publucations minimize it. It is so frustrating to see it, being so broadly misrepresented. It HURTS. Pain, severe pain is NEVER-ENDING.

 Yet even Mayo, Merck and CDC minimize the reality of the suffering we go through. I suppose having an unexplainable disease with no clear pathogenesis is easy to dismiss.

I bombard news outlets, the President, celebrities with this blog, in hopes that someone  somewhere takes the time to listen. Takes the time to care. Takes the time to say, hey this disease is causing severe suffering.

It is causing poverty, it is causing suicides.

It is not something a sufferer can ignore.

Do we not deserve compassion?