Sunday, September 23, 2012

Anger & Advocacy: When everyone wants to cut you open

Usually when people are sad, they don't do anything. They just cry over their condition. But when they get angry, they bring about a change. 
James Russell Lowell

Perhaps it was the fact that I was hungry. Perhaps it was the fatigue. Perhaps it was, in a not so subtle way, my breaking point.

My day off began like any other. Any other person with a chronic illness that is. With a doctor’s appointment of course. I knew this wouldn’t be a routine visit as I had been having some pain in my side, lots of fatigue and some shortness of breath. I had scheduled the appointment the day before, truly believing I’d be in and out with a new prescription in my pocket by lunchtime. I skipped breakfast, saving my calories for an IHOP waffle I had been craving for days and was certain I’d be able to enjoy once I handled this nuisance known as my “health.” I threw on some clothes (and by that I really mean slowly and gently I sat and clothed myself whilst I gasped for air) and drove myself to the doctor’s. When I got there they sent me to have a chest x-ray at an imaging center that was found half way around the world.

If you live in Houston, you are well aware of our amazing medical center. You are also aware that the place is a logistical nightmare. There are tunnels and train, intersecting buildings and wheel chairs, and hospitals with the same name on two different streets. When you can’t breathe and you don’t know where you’re going, you better hope someone in scrubs walks by. Needless to say, I got lost on my way to the x-ray imaging place. By the grace of God; however, I ran into the nurse who had sent me to get the x-ray and she pointed me in the right direction. The X-ray got taken care of after many delays and the lovely nurse came back to get me after the doctor told her he was concerned about my shortness of breath. She kindly found me a wheelchair and pushed me back across the 2.5 blocks to the doctor’s office.(That is NOT an exaggeration, doctors in the med center actually expect sick people to go traipsing around the city for medical procedures..sigh)

As I reflect now, I believe that being highly encouraged and almost forced to sit in a wheelchair was the beginning of my discontent. I was not incapacitated for crying out loud! I was only having a little fatigue. I could walk on my own two feet; it would just take some time. Why couldn’t anyone understand that, show some compassion, and just slow down? I did not want to be made into an invalid. I just wanted to go to IHOP and eat a damn waffle.

I sulked and writhed inside. When we arrived at my rheumatologist’s office, they took my blood pressure (which was elevated), temperature and height a weight. I sat in the patient room impatiently waiting for him to tell me what I had, give me a pill, and send me home. My doctor knocked gently and entered with a folder in his hand and a wide eyed expression.

“I just got the x-ray results back. You have anpericardial effusion. That is, fluid around your heart. Your blood pressure is high and I am concerned about your kidney function. We are admitting you to the ER right away.”

What the hell?! This is stupid. You’ve got to be kidding me. I don’t have time for this, and I’m so hungry I could eat my arm. Those were the first thoughts that ran through my mind. The anger was rising.

After a series of breathe in, breathe out stethoscope checks, a set of unrelated questions about my scleroderma and a phone call from the guy who reads the x-rays confirmed the diagnosis, I was back in a wheelchair being pushed to the Memorial Hermann ER. I had a doctor’s note in my hand, an empty stomach and a heart full of “fluid” and rage.

This was NOT happening. Who has time for these things? It’s my day off! And not a sick day, like a real legitimate day off! I sat in the waiting room and texted Lupe. (Yeah, yeah I know. You shouldn’t “text” the fact that you’re being admitted to the ER for heart failure and kidney problems. But, in MY defense Lupe is a teacher and I know he can’t answer the phone during class. Besides, it was my FIFTH time in the ER this year. These incidents were becoming part of our “normal.” It’s like texting: “going to the store, need n e thing?”) He called right away and I explained every aggravating detail with as much sarcasm as I could muster. He said he would be there as soon as possible.

Shortly thereafter, I was admitted. Within moments 5 different health professionals entered the room and began poking and prodding me. One inept nurse tried to put in an IV and take my blood,(she missed several times) one attached probes for an EKG, one asked me take off my clothes and put on a gown, an intern asked me questions about my general health, and a doctor tried to listen to my lungs amidst all the chaos. I laughed and nervously wriggled in the bed, answering questions as I heard them, handing over an arm, a vein, and a boob, breathing deeply in and out. I still didn’t understand what was happening or why I wasn’t eating at IHOP yet.

I was no longer a human being with a soul. I was a human body with a problem. A cracked shell that needing mending. A scientific experiment. I was finally “over“ all of it.

This is now beyond stupid, I thought to myself. Why am I even here? Nothing really hurts, except for everything THEY’RE doing to me. This is absurd. They ran more tests, drew more blood, and extracted urine.

After the first few hectic minutes, things calmed down. I had an echo done of my heart, which confirmed over 800cc’s of fluid (I don’t know what that means either but apparently it’s a lot) and inflammation around the heart. The echo was so fascinating that the doctor grabbed two residents/interns/students to show them. Joy, with cynicism I thought: How I ironic that I, a teacher on my day off, had officially become the lesson plan for the day. The two gentlemen beamed with excitement.

The only nurse who had bothered to learn my name must have seen the horror in my eyes as I stared at the interns because she had the compassion and sincerity to ask me:

“How are you doing honey?”

And…unabashedly, I burst into tears. Which, because I’m me, only pissed me off even more. I was NOT going to let these people or this situation make me cry. I refused to let it have that power over me. This was not how this was going to go down. Not today. Not anymore. Not ever again. I took a deep breath, wiped away the tears and stared at the needle in my arm. No one asked me anymore questions.

Eventually, the ER doctor came in and explained to me the series of problems I was having. The human heart naturally has a little bit of fluid around it to protect it. I, on the other hand, had a lot more. The theory is that this was probably caused by my scleroderma and being off of my meds for so long. (This is what we call a “flare up”) If the fluid doesn’t go down it can lead to heart failure; however, I was also suffering from possible renal crisis. Renal crisis is kidney failure, which was also induced by my scleroderma and was elevating my blood pressure. In conclusion:

1. They would had to give me drugs to reduce the inflammation and fluid around the heart BUT
2. Those drugs would elevate my blood pressure even more sending me into renal crisis SO
3. They had to give me other drugs to REALLY lower my blood pressure in order to give me the heart meds OR
4. They would have to stick a needle in my heart to drain the fluid OR
5. Open my chest up and insert a tube to drain it out.

Those were my options. I was confused. I was livid. I just wanted a damn waffle. And yet, no one would feed me anything “in case we need to prep you for surgery.” In that moment, I decided that no one was going to cut me open simply because they wanted something to do.

By this point, Lupe had arrived. He was updated on my status and we were discussing what to do next. Luckily, I have an amazing rheumatologist who sent other amazing doctors to check on me and he insisted on treating me with the drugs first. He wanted no needle, no tubes, no cutting. I trusted him, and I definitely did NOT want to be cut open or probed with a “large needle.” We all agreed that was going to be the plan. Give me all the drugs you can to make this go away. I do not want to go under anesthesia. (My condition makes the healing process really slow, the last thing I needed was to undergo heart surgery)

I felt at ease for a moment. We had a plan. All would be well. That was until fancy pants cardiac Nurse Practitioner walked in with the “paper work.” She explained the two surgical procedures and wanted me to sign consent forms. I stopped her dead in her tracks after several crazy looks back and forth between Lupe and me. The camel’s back had broken.

I know you’re not supposed to shoot the messenger but I needed all these “specialists” to be on the same page about what was, and was not going to be done to me.

“I’m sorry, I JUST spoke with my rheumatologist, and HE said they were going to give me prednisone. HE said I was NOT having surgery or a needle or anything. He said I would be treated with medication. Have YOU spoken to him? Cause this is NOT what he and I agreed on. I really think you all need to find him, or call him and see what he says.”

She smiled at me patiently, twisting and turning the papers in her hands. “Ok, well would you like to speak to the cardiac surgeon to get all the information on the procedures and ask him any questions? Because this is what HE is recommending.”

“Um, yes. I want to speak with HIM. And you all need to speak with my rheumatologist. Dr. A--. Find him and talk to him.”

“Ok, ma’am. I’ll see what I can do.” And she walked out of the room, papers in hand. Unsigned.

I had finally said “no.” My anger and frustration had become my ally. I advocated for myself in a way I never had. And apparently, I caused quite a stir. (I found out later that the ER doc, my rheumatologist, the cardiologist and the cardiac surgeon argued about how to treat me. ER doc and surgeon wanted to cut me open, others wanted me on meds.) I don’t generally stand up to anyone in a position of authority, especially when I think or know they know more than me. But in that moment, on that day, I knew that I couldn’t just say yes and hope for the best. If they weren’t going acknowledge that I was more than just a body, I was going to force them to.

It was a blessing to have Lupe by my side to help me sort through the chaos and make sense of the medical jargon and miscommunication. It was a grueling day that led to 5 more days in the Heart and Vascular ICU, and a lot of drugs that I will probably have to take for the rest of my life. But I know that those 5 days could have been 10 or 12 or even more with surgery and large needles and even stronger drugs with the risk of infection as a side dish.

I know that if I had let the tears flow, that if I had sunken into a pit of “woe is me” I would have signed those papers. I know anger does not solve all our problems. I know anger is one of the stages of grief. But that day, anger propelled me forward to take action. I’m a better person because of it. I am now not afraid to say no and hold my ground. My health is a non-negotiable, even if I never did get that waffle.

If you ever find yourself in a position where you have to make a medical decision and you CAN advocate for yourself (meaning you’re not on a breathing machine and can talk or communicate in some way) I want you to remember a few things that I came away with.

1. Get informed. Ask what they’re doing to you, why they’re taking blood or urine, what the machine is for, who is going to read it etc. Even if all you can say or repeat is “what’s that for?” or “what are you doing? What are you doing now?”

2. Communication is key. If you live with a chronic/invisible illness you probably already have at least one doctor you know and trust. And who understands your condition. Be sure that doctor is informed about what’s happening with you. Ask to speak to him/her and be sure the ER or any new doctors have spoken with him/her also. These people aren’t going to go out of their way to find each other, they’re “too busy,” so force them to. AND they all have their own medical agenda, be sure you have one too.

3. Have a support system. I know not everyone is fortunate enough to be surrounded by so many loving people. But try to have at least one other close friend or family member around to help you sort through the chaos. They can bring clarity to the situation and ask the questions you did not think to.

4. Just say no. If you have the time (and it’s not do or die) kick everyone out. Say no to a procedure in the middle of it if it hurts. If you’re not sure what they want you to do say no. If you just need a minute to think, ask them to leave. If you don’t want to be the lesson plan say so.

It’s a tough world we live in. It’s even tougher when our bodies are fighting against us. But there are some things we can control and sometimes a little rage can go a long way. In the end, it’s your body, and only YOU can make the final decision. If you ever feel helpless or out of control, let anger become your ally and let it give you the strength to advocate for yourself.

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