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Humorless

On Thursday I went numb. On Friday I went crazy. They stole my humor. 
24 hours without a word from a doctor, the last one I saw told me that he didn't think I was having a stroke, but he'll go talk to his attendings and be back in a couple hours. 24 hours nurses and techs tried to get ahold of a doctor and each time they were dismissed and ignored. 24 hours I sat in a hospital bed wondering what I had done to deserve this, what I had done to be treated like a divorcee begging for her husband to come home and explain why. All I wanted was to talk and ask them a question, all I wanted was to be treated like an equal. They may have spent half their life in medical school, but I spent half my life fighting this disease. We are both experts in the field of Crohns.

My last hospitalization in November and December was two parts I've broken down into parts A and B. I agreed to be admitted to the hospital, begrudgingly, because I had no appetite or thirst. I was in excruciating pain in my joints and stomach. If it had been up to me, I would have gone a few more weeks without eating. I'm a stubborn bitch. 

Part A was pretty typical and filled with throwing idiotic first year interns off my case, picking out outfits for my nurse's social event, and getting a NG feeding tube placed in my nose. Part B, after I threw up the feeding tube at home and had to go back in, was different. It was the worst stay I've had since they removed my colon -- and I had spent half of that month-long stay asking for a medically induced coma and the other half trying to pry open the window to jump off the ninth floor. 

One of the worst parts of trying to explain a disease that is invisible in so many ways is that no one can verify what you say and you can't prove it. I wasn't eating, I couldn't tolerate the idea of drinking even a sip of water, and my pain was unbearable. At the beginning of the end of the stay, my whole right side of my body went numb and into a full spasm that replicated the symptoms of a stroke. No one knows why. And, each doctor that came in had a different theory, contradictory plans for care, and an opinion that since they could not figure out what was causing this flare that I apparently put the "psycho" in psychosomatic.

My physical symptoms were real but their dismissal of them made me feel like a lunatic wearing a tin hat.  I locked myself in my bathroom and cried in the fetal position on the shower seat. I was essentially an extra in Girl, Interrupted. Winona Ryder would've been proud. If it had been an act, I would've earned a Golden Globe, at least. Maybe even a SAG award, I was a disaster, emotional and vulnerable.

If I hadn't been discharged on the exact day I was, I know in my heart I would've walked my IV pole and myself straight into the psychiatric ward. Not for what brought me in originally but for what transpired once I was there. Mom would have followed me lugging all of our the bags, trying to figure out how she would coerce them into letting her sleep next to me, like a clever donkey.

Below is a picture of me waiting to be given my correct discharge paperwork. One where they didn't list my disease as colitis, despite the fact that I haven't had a colon in 8 long years, and say the reason I was admitted was abdominal pain, like I'd overdone it on pineapple buns at dim sum. One where they didn't expect my mother and me to drive 2 1/2 hours on Christmas Eve to come get an X-ray that takes 2 minutes (that X-ray tale is for a different day, long story short they lost a pill in my rectum, chew on that one for a little while).  I couldn't take being seen or being talked to anymore. I couldn't handle looking into the eyes of doctors on the GI team anymore. I couldn't face the horrific way they treated me without a care in the world. I had spent the last three days on an emotional roller coaster screaming, sobbing, hysterically laughing about shitting my pants. They had taken my dignity, my cloak, my defense mechanism and ripped them so far away from me that I only survived by covering myself with a real cloak. A cloak with my baby dog's face on it.

I spent years denying my depression and anxiety. I fought every day to be positive and smiling. It took me 14 years to finally admit that I needed real professional help. This time I accepted my fate and sought out medical advice. When I started on a medication regimen, it really helped. It was working well for two weeks before I was admitted to the hospital and then a set of doctors decided that they knew what was best and without reason, compassion, or listening they took away the little sanity I finally had just earned back. Below is a letter I wrote my doctor, in day 2 of the 3 day terrorfest. I was in my nightmare and no matter how hard I tried, I couldn't wake up. 

Hello,

I am just ready to go. I am physically and emotionally drained. I don't have any fight left in me. All the reasons I stopped going to the doctor have happened to me in this hospitalization. 
It couldn't be more clear to me that no one listens, cares, or has any concern for my well being. To be purposefully avoided by a doctor for 24 hours, when I was only asking to talk for clarification on my treatment, is unacceptable on a level I can't express. And then for his supposed bosses to not even know he never rounded on me and never apologize or admit any wrong doing is unforgivable.
I have always regarded all hospital employees with compassion and respect and I have only asked for the same in return.  To be constantly dismissed and ignored is not helping my anxiety or depression. I feel worse today about the state of my health then I did when I came in. 

How am I supposed to trust anyone when they tell me one thing and either do the opposite or do nothing? When my nurses look at notes and tell me that what was said to me is not written anywhere, how can I not feel betrayed and lied to? When I am being treated like an addict, how can I not think my pain is not being taken seriously? Decisions and tests are being decided without any concern for how I feel and since those decisions only affect me I should at least be part of the conversation. 

I am not an idiot, I am not crazy, and I am not an addict. But the people in charge of my care have been in agreement that I am. This is no longer the safe place I trusted. 


Gabrielle Rosenfeld

Now that I have gotten some distance from the hospitalization, and rebuilt my relationship with my doctor (who agrees with me about the hospitalization nightmare), I realize that I had a better experience than so many others might in similar circumstances. I have a strong voice and I use it to fight for myself and my loved ones, but there are thousands of patients who don't have a voice and have no one sticking up for them. Without the love and guidance of my support system, I would not be the fucking Olympic warrior I am today (side note: I may start disease Olympics, like who can poop the most in one sitting or how fast you can walk a mile with your walker). Thinking about the voiceless and the powerless having to deal with these terrible doctors makes me not only want to advocate for them, but also make some doctors cry because they deserve to know how it feels.

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