Thursday, April 5, 2012

How Sick Do I Have to Get?

This is a question every lupus patient has had to ask him/herself many, many times. How sick do I have to get before someone takes me seriously? How sick do I have to get before I get diagnosed? How sick do I have to get before the doctors will treat my disease?

The answer is always, always the same: sicker than you are right now. It's no wonder lupus is sometimes fatal; doctors don't pay us any attention until things get really bad. It took me six months of agony to even be allowed to start trying real anti-lupus drugs. It took a further year or so of non-helpful drugs to get put on the one I would have chosen right off the bat, had I been my rheumatologist.

The admittedly relatively petty issue (compared to life-threatening ramifications) that has risen my ire is that of nausea. How nauseous do I have to get before someone, anyone will give me an anti-nausea drug that works? I have family members fighting cancer who tell me they have no trouble with nausea because there are such great anti-nausea drugs out there that the chemo no longer causes them problems. I'm on a fraction of the dose that they are on, admittedly, but why am I not allowed to take a fraction of an effective anti-nausea drug?

Nausea is awful. It's pervasive. It means feeling sick to your stomach all day, every day. Imagine having a stomach bug permanently. I'm still having dry heaves from my chemo dose six days ago, and they honestly expect me to take another dose tomorrow. How sick do I have to get?

I used to have a theory that it was weight related. As long as I remained within the healthy weight guidelines, they wouldn't care how nauseous I got. Well, guess what, folks? I'm slipping off the bottom edge of those guidelines, and nobody cares. Apparently I still don't look sick enough. I have to say I look pretty damned sick to me, especially if I don't wear makeup, nice clothing, etc. to hide my disease.

And maybe, scarily, that's the answer. How sick do I have to get? Sick enough that a doctor will be visibly shocked by how bad I look. If you look healthy, you must be healthy, after all. For a layperson to think this way is reprehensible. For a physician it's unconscionable.

How sick do I have to get? Apparently sicker still.

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  1. I used to get pre-medicated with Ondanestron before chemo see link below:
    I get it through IV and it stopped me from being nauseau.

  2. I wish they'd do the same for me. I'm so sick all the time, and they simply don't care enough to do something to give me immediate relief.

  3. Remember Aunt Jef's "Running through the park" dress? Wear a color that looks terrible on you, really terrible. Really mustardy yellow or so, totally worked for her. (I think it works better on male doctors, which is what hers was).

    And it is utterly unconscionable to deny you decent anti-nausea meds. It's all about the insurance's balance sheets; the good ones cost a lot.

  4. Oh, that is all SO wrong. Yes, what you need to do is look sicker for the doctor. Don't try to hide it. And ask the family members to chime in with their good experiences with the anti-nausea drugs. Then print it all for the doctor. And puke on his/her shoes maybe? I do so hope they will listen to you today and give you the good stuff.