Monday, October 31, 2011

Screaming "Monica"

As today is Halloween, you may hear many people screaming: screaming during a scary movie, screaming because a family member pulled a Halloween prank, screaming on a haunted hayride. Last week I heard a different type of scream, a much more bone chilling type. 

I started DMSO treatment last week for IC. If you don't know what this treatment is, to make a long story short a solution is put into your bladder directly with a catheter and then you have to lay on your side and rotate every few minutes. When you are done you go to the restroom and urinate out the solution. This is a six week treatment program, once a week, and I have only gone to one appointment so far, but I was excited to try it as I am hopeful it could help my symptoms.

This procedure was being done at my uro office, who I get along with, not to be confused with my V doctor who has me beyond frustrated. Since I was very nervous about getting the treatment my first time, I sat anxiously in my exam room waiting for the nurse. As I waited and played Angry Birds on my phone, it dawned on me that the receptionist told me that they only do this treatment one day a week and to try not to ever cancel an appointment b/c they need to fit a lot of people in. This means there were other real live IC patients just feet away from me in other rooms. I have never met another IC-er in person so the thought intrigud me.

As I continued to play my game, suddenly I heard screaming. It was coming from another exam room. 

"I CAN'T DO THIS ANYMORE!!!!!" a woman yelled, we will call her "Monica" for the sake of this post. "I AM SICK AND TIRED OF BEING IN PAIN ALL OF THE TIME. NO ONE LISTENS TO ME. NO ONE IS NICE TO ME. NO ONE HELPS ME." She also dropped several f-bombs and was making tons of noise and banging around.

A nurse started SCREAMING back at her. They fought for a while.

The nurse then paraded out in the hall and started screaming at other nurses: "I CAN'T TAKE MONICA ANYMORE. TELL DOCTOR SO AND SO I REFUSE TO HANDLE HER. SHE ALWAYS ACTS OUT OF CONTROL".

As I listened to this scenario play out, a few different things went through my mind:

1. Someone was getting in trouble at the doctor's office and it wasn't me. (I have had fights with many a doctor, but never at that level where the whole place could hear. This was no small office, this was a huge hospital.  I felt terrible for her, but I guess it made me glad to know I am not the only one who fights with doctors)

2. Did Monica have IC? Should I go talk to her? (I knew that I couldn't. I know that I would probably get in trouble for going near another patient's room and asking about her condition, but I wanted to so badly. I wanted to tell her that she wasn't alone. I wanted to tell her about the people who have treated me like crap over the years. I wanted to tell her not to give up.)

3. I hoped Monica's nurse wasn't the person who was going to be doing my procedure--luckily, she was not.  (I know this is selfish, but the nurse sounded very hostile and out of control and I was just petrified to have someone in that state of mind catheter me.)

The screaming continued, blood curdling screams. Monica was truly in pain. I wondered if someone was too rough performing an exam on her. I wondered if she was being denied pain pills. Eventually after a few more minutes of drama it got quiet, I think I heard someone get Monica's doctor. 

As I did the rotation part of my procedure, I had more time to think. It was just SO SAD that Monica had to go through that. We have so much available to us in this country and there are women screaming out loud in pain and still the medical community does not take IC seriously enough. I wish every doctor who has ever treated an IC patient badly could have heard Monica scream.

I guess Monica's scream was like the scream heard around the world for me. I am in a lot of online support groups and I read about other women's IC pain, but to hear another women screaming in a hospital the way I have screamed in my own home on my darkest day, it was like bringing it all to life.

As for the nurse, she said some horrid things to Monica. A part of me wishes the nurse could have IC just for one day (I would never wish it on anyone for real) so she could understand why Monica was so cranky. Many nurses and doctors don't have enough compassion b/c they can't feel our pain.

And Monica...I wish her well. I wish her more pain free days. I wish I could tell her that even though the hospital staff wasn't listening, I was.


ciinderellaa said...

Ugh-your blog made me cringe - because I KNOW the pain that Monica was in!!!! I was quiet about it -- but DMSO was TERRIBLE!!!! I did it for 8 weeks...and I admit that it did help me in the long run for a while, but then my IC gradually came back into full swing. The slight remission that I had was NOT worth the pain and agony of the weekly instillations...and the worst part was driving home from the urologist....had to stop to pee at every place possible and it was pure PAIN!!!!!!

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