Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.

He has since died, and I took on the cause of making cancer care more transparent for everybody.

Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."

I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.

I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."

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Friday, May 6, 2011

How Professional Biases Affect Our Health

"Sometimes I just give him saline instead of ativan. He asks for it so much. He's not THAT anxious." The nurse whispered to me. 

I peered at the patient sitting paralyzed in his wheelchair, head up, exposing the hole and tube in his neck breathing for him. The plastic canula was taped to his face. Frothy spit kept rising up, coming out, and threatening the security of the tube. He couldnt talk. The vent kept beeping with alarms. 

I was nervous just looking at him. 

He was a healthy 50ish independent man before a car accident made him an overnight quadraplegic. Medically "stable" he'd been sent to a long term ventilator unit indefinately.

 I looked back at the nurse, appalled, wondering how comfortable she would be. 

Yes, biases among health care professionals are very real, and yes, they do effect treatment. 

I know. I've been there on both sides of the treatment table. 

In school, practitioners are told subjective problems like pain or anxiety are "whatever the patient says it is" and to medicate accordingly. Then real life hits where everybody has their own experiences they use to decide how to treat others and drug addiction hits a nerve, especially when a young person is involved. 

This is a problem that will grow as the chronically ill live longer, as cancer patients live healthier, and as the population gets older. 

Nobody with severe health problems expects to take massive doses of narcotics. They expect to die or get better, but that doesn't always happen. 

With the issue of pain management unaddressed, professionals take it upon themselves to regulate patients' medication if they think the person has gone on a free-for-all.

From experience, pain management is not fun amidst the suffering. 

It's past time the drug tolerance issue is addressed large scale, in schools and hospitals all over, but I'll start here answering some burning questions I once had but couldn't ask. 

Yes, after five years with cancer, I am addicted to my pain killers. I'm addicted the same way someone who drinks too much coffee or takes anti-depressants is: physiologically, because of my chronic long term suffering. 

I take, nurses give me, and doctors prescribe doses large enough to kill me.... If I'd never taken them before. I've taken them for four years, building a tolerance. The doses would kill the average person who has never had them, I'm not average. I have experienced suffering unimaginable to most.

I've  been asked if I take more than I need to "have a little fun with it." by a Doctor.

 I wish I could. I take morphine to take a deep breath pain free. I take it to not feel my bone marrow swelling in the hallow of my bones, expanding outwards, trying to push its way out. I take it to not feel the tumors growing, pushing on my kidneys. 

In spite of my extensive serious health history and an appearance contradictory to your stereotypical addict, I've been labeled a "drug seeker" and refused morphine in an ER when I arrived in septic shock with a fever of 100.6, BP 80/50, H rate 160 and drifting in and out of cognition after 5 years with cancer.

 Drug addiction is the least of my problems. 

Judgments don't bother me.

 Morphine is part of my regimen. It takes stress off my body, allowing me to heal more quickly. I avoid pneumonias by breathing painfree. I can rehab after a setback that would leave me bedridden. My morphine allows me to walk, regain strength and build muscle. 

It is part of my regimen the same way my inhalers allow my lungs to expand or my folic acid assists my Red Blood Cells in growing. 

Ignorance does bother me. Failure to recognize the role pain control plays in healing is ignorance. 

Worse, suddenly refusing pain medications causes physical withdrawals. Nerves feel fried, firing and shocking. Cold sweats set in. The pain is made worse. 

When biases effect care, health outcomes suffer. The patient has an acute pain problem beyond their chronic pain, and often withdrawals. 

 Now that some of your questions are answered, all I ask is if you're ever in this situation,  please, Have mercy.

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