Professional Patient

Things Not to Say to a Sick Person with a Genetic Disorder

Wow, doctors can say ridiculous, insulting things. Two real winners I heard about from friends:

1. "In spite of your genes, you seem quite intelligent."

A doctor said this to a patient. Can you imagine? The patient should have replied "In spite of your medical degree, you seem profoundly stupid and ill-mannered!"

2. "If I saw you on a bus, I wouldn't be able to tell that there was anything odd or wrong about you."

A doctor said this to a patient. Again, can you imagine? The patient herself commented that she should have put her hands around the doctor's neck and asked "Can you tell now?!?"

I've got to add these horrible examples of bedside manner to my list of reasons to change to a new doctor.

Got any winners from your own experiences? Leave a comment!

Snappy Answers to "What Do You Do All Day?!?"

Yesterday, I officially applied for U.S. Social Security Disability Insurance (SSDI) benefits. SSDI is the U.S. government program that pays you a meager monthly stipend if you become too sick to work at any job. It was a major pain in the ass to apply (more on that later), and made me realize one basic truth. I DO NOT WANT to be on government disability income. I DO NOT WANT to have my life up-ended by my neck problems. (Ask anyone who really needs disability income, and they will all say "NO, I don't want it, but I do need it." It's the people who are 100% pleased to get it who are the scammers!)

Earlier, I posted about how people don't know what to say when you explain that you are on medical/disability leave from work or school. "So, what do you do all day, anyway?" they ask. Some smart-ass answers to this indelicate question:

Dance naked and eat nothing but Twinkies… there’s no one around to see me do it, and I’m sick anyway, so who cares?

I'm a government spy. But I can't tell you that, or I would have to kill you.

I'm a professional TV watcher. (Thanks Tiffany, of Sick Girl Speaks for this suggestion!)

Lure small children to my house and cook them up for dinner.

Try and keep the voices in my head from killing each other.

Wish for superpowers.

Eat bon bons and get hot Chippendales guys to massage me all day.

I'm training for the Iron Man Triathalon.

Run a brothel.

I run a email spam empire. All those "bigger" "harder" "richer" emails are from me!

Use the power of positive thinking to “fix” me.

Memorize the entire TV guide.

Memorize every episode of every Law and Order (and L & O spinoff) show.

Hurt myself and get sicker so I can stay home and enjoy the “easy” life.

Devise a solution for peace in the Middle East.

See if I can watch every single title Netflix has to offer.

I own a moving business… load and unload trucks all day.

I help the Jehovah’s Witnesses go door-to-door.

I run a dog-fighting ring.

Exist just to make career-obsessed people nervous, to make healthy people nervous, etc.

The real answers are less exciting, but still important:

I rest. A lot. It takes a lot of energy to get well or be sick.

I email, write, and call family and friends. I wave to neighbors and sometimes have a quick chat.

I teach my dog new tricks.

I watch the Food Network and try and become a better cook (they make it look so easy).

I grunt through shitty exercises and PT!

I exercise more than I would like to!

I collapse midafternoon for an involuntary nap.

I try and put my story out there in case it might help someone else.

I read and meditate.

I take medications no fewer than four times a day.

I appreciate the many blessings in my life: good health insurance; a loving, helpful, and loyal (and sexy) husband); friends and family who haven’t forgotten me; a place to lay my head at night; disability insurance payments to keep the mortgage paid, put some food on the table, and keep the lights on.

And You Think YOU Need Your Medicine!

This is about how I get when I need my medicine. Haven't we all been there!?!

If you like cat humor, you will enjoy the I Can Has Cheezburger? site. It makes me laugh everyday. And that's good medicine, too. :)

"My Wife is Like a Jaguar... "

Last night, my husband was instant messaging with his best buddy from college. They were discussing how my dh had taken the afternoon off of work to cart me to two different doctor's appointments (each on opposite sides of town). The friend made some comment about "Wow, she's got a lot of medical appointments, doesn't she?" To which my dh calmly replied "My wife is like a Jaguar... great to look at, fun to drive, but always in the shop!"

If I had heard this conversation first-hand, I might have given my dh a punch in the shoulder for talking about me like this! However, on reflection, I figure two out of three isn't bad... my hubby still finds me attractive and sexy, even if I do require constant maintenance.

What kind of sexy, expensive sports car are you? Go babes, go!