Monday, April 20, 2009

This Condition Some Call Lupus

Hi Lupies!

I'm in lupus management mode now. This means that I'm still in a flare, but I'm going to have to learn to live my life while dealing with the flare. I'm on my pain meds everyday. I'm walking at a slow pace instead of my quick clip of a walk. I've given up on my shoes because they just plain hurt to wear, and I have cushions on my elbows because they hurt to rest on my desk.

This weekend, my friend Rachael picked me up and took me to the Getty for a Russian poetry exhibit. I loved it. I'm glad she picked me up because I wouldn't have been able to drive myself. It was good to get out after spending so much time cooped up. I think the depo shot I got from the doctor is working a bit because I couldn't even imagine doing something like that the day before.

Feeling this way is making me less tolerant of others again. I'm not happy with how lupus is being treated in the media lately. Apparently, there's some rapper accusing another rapper of faking lupus. Also, on a recent episode of 30 Rock, a woman said that Liz Lemon could fake a mild case of lupus to get disability insurance.

First off, it's not that easy to get disability insurance payments for lupus! Trust me, I hear from women everyday in misery who are struggling to get by because they lost their job, and they can't get disability. My sister couldn't get disability for lupus until her kidneys started to fail, and that only succeeded on appeal!

Lupus isn't a disease for convenient excuses. It sucks! So you entertainers out there, stop treating it so lightly. Many of us just try to get by day to day without giving up. We don't need people who don't understand what it's like to be miserable everyday making fun of it.

I know, I know. It's just a joke. Lighten up. I get it. I'm sure I'd get it a lot better if I weren't sitting here in pain.

This is a challenge to you writers and actors at 30 Rock. You got your cheap laugh, now do something good to balance out the scales. Do a public service announcement for lupus. Let people know that it's a serious condition. That even though you made a joke about it, there are people out there suffering and dying from it, and those people need support. Those of us even with the "mild cases" of lupus trying to scam disability insurance would appreciate it.

Thanks.

Have a lupie day!

LupieKat

4 comments:

equals42 said...

My wife was just denied disability. Even though she just got out of the hospital after a week of cardiac fun. This is her third long stay in 18 months. She didn't enjoy the 30 Rock joke at all. They need to apologize and make good.

Lola Lana said...

It's just like the show House, which I love except the whole "It's never Lupus" thing. Too many doctors really do think this, hence the 15 years it took get the diagnosis. Unfortunately, I think we're going to keep getting picked on by the media until one of their own suffers from it.

The Lupie Kat said...

Thanks for your comments. I hope that people learn to understand.

Covered Call Investor said...

http://www.playbill.com/playblog/2010/11/jane-krakowski-to-light-empire-state-building-for-lupus-foundation/

Here we have a 30-Rock star bringing attention to lupus in a positive way. Also, I don't think the writers of 30-Rock are being as malicious as you say. They are simply making a joke. To me, the joke wasn't aimed at lupus sufferers per se, but more like a joke about people who take advantage of the healthcare system and maybe even insurance companies that payout money where they shouldn't. If anything, 30-Rock is bringing attention to lupus that might not have been there. Short of having the disease or working in healthcare, many people may never even hear of the disease. So by mentioning it in several episodes of 30-Rock as part of a joke people might end up "Googling" the term and may learn something about it. I am not belittling your disease and suffering, I am a healthcare provider and I take disease very seriously.