don’t open the medicine cabinet

Am I the only one a little bit scared by this idea? No, scratch that: Am I the only one horrified and terrified by this idea?

The rub:

Sheriffs in North Carolina want access to state computer records identifying anyone with prescriptions for powerful painkillers and other controlled substances.

The state sheriff’s association pushed the idea Tuesday, saying the move would help them make drug arrests and curb a growing problem of prescription drug abuse. But patient advocates say opening up people’s medicine cabinets to law enforcement would deal a devastating blow to privacy rights.

I get that allowing law enforcement the ability to know who has been prescribed pain killers would likely make their job easier when it comes to those abusing the drugs. I understand that. I really do. But what about those of us — and I would wager we are the vast majority of opiate users — who take the drug as directed under a doctor’s care? What about those of us with arthritis, fibromyalgia, autoimmune disorders, injury or anyone else with a legitimate need for pain killers? Last I checked, I didn’t sign away my right to privacy when my NP prescribed some darvocet.

I feel that when I go to the doctor’s office, I have a reasonable expectation of privacy. Ditto for when I pick up my prescriptions at my local pharmacy. It’s a shame that some people become addicted to these powerful drugs and some people sell them illegally. But I don’t think that is enough reason to allow Deputy Smith at the local sheriff’s office the right to type my name into a database and see what drugs I’m taking. I hope North Carolina’s legislators see it my way because the alternative — and its implications for other states and privacy rights — is, quite frankly, a little too Nineteen Eighty-Four for my tastes.

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not all that

It’s strange to think that health care reform was passed six months ago. Six months ago, there was a lot of hard-to-stomach rhetoric floating around: baby killers, death panels for the elderly and health as a commodity. But, as so many have said — and those with chronic illness know too well — it’s the healthy who have the luxury of seeing insurance that works when you need it as something to be taken for granted.

This health care reform bill is not perfect. It’s not universal coverage. For me, it doesn’t go anywhere near far enough. The provision that will actually help me — relief for those of us with those pesky pre-existing conditions — doesn’t go into effect until 2014. The government is, of course, toting all that happens now, all those who are helped now or who will be helped soon. But, really, I was and continue to be pretty disappointed in the so-called “reform.” Nothing substantial has changed. Sure, I’m glad that in four years, I would have to worry as much about losing my insurance and not being able to get that back.

I know there’s no such thing as a free lunch. I am willing to pay for my health care. But I don’t think it’s right that people should have to choose between eating and taking the medications. I don’t think it’s right that people should have to stop taking drugs that help them because they can’t afford the co-pay. I don’t think the insurance companies should have been the big winner in health care reform, with millions of mandated customers coming their way because of these changes.

There’s a lot more that could have been done if the powers that be really wanted to help the uninsured, the under-insured, those of us with pre-existing conditions. And they didn’t. Maybe in the future Congress will man up and do a proper job of it. But for now, I am not impressed.

can i have phil mickelson’s psoriatic arthritis?

via AP

Golfer Phil Mickelson’s recent announcement that he has psoriatic arthritis has been blowing up my Google Alerts since his press conference. And though I have read many of the articles about it, I’ve found most of them to be incredibly disappointing. Many of the reporters evidently decided to take what Mickelson said about PsA at face value, instead of doing the five seconds of research that would suggest that starting Enbrel does not mean everything will be coming up roses.

Here’s some of what Mickelson said at the press conference as well as an NBC reporter’s take (via NBC Sports):

Weekly shots have brought the disease under control, and Mickelson said there shouldn’t be any negative impact on his long- or even short-term health.

“I’m surprised at how quickly it’s gone away, and how quickly it’s been able to be managed and controlled,” he said. “I feel 100 percent, like I say. But when I (was) laying there on the couch and I (couldn’t) move, yeah, I had some concerns. But I feel a lot better now.”

Weekly shots of Enbrel lower his immune system, and Mickelson said the difference was noticeable almost immediately.

“I feel great now and things have been much, much better,” he said. “I’ll probably take this drug for about a year, and feel 100 percent. I’ll stop it and see if it goes into remission and it may never come back. It may be gone forever.”

“It’s not that it’s cured, but it may never come back,” he added. “Or if it does come back, I’ll start the treatment again and should be able to live a normal life without having any adverse effects. So I’m not very concerned about it.”

Wait, what?

I’m pretty sure that’s not how it works. Since Mickelson went to the Mayo Clinic, I’m hoping his doctors told him biologics, like Enbrel or Humira or Orencia or Remicade — all of which I have been on and all of which stopped working for me after a promising beginning — don’t necessarily always keep on working. For some of us, they may never work or they just might stop helping after awhile.

Regardless, psoriatic arthritis — a chronic, potentially debilitating condition — is something to be concerned about regardless of whether the current treatment is working. This New York Times article does better job of explaining what Mickelson faces. And I get why Mickelson is (hopefully) just downplaying the seriousness of what he has. When I was first diagnosed, I didn’t really want to face it either. I did the same thing, though my doctor’s optimism led me to believe it wouldn’t be so bad.

Still, it’s really disappointing that the many reporters didn’t take the time to take a step back and phone a dermatologist or a rheumatologist or even hop onto the National Psoriasis Foundation’s website to find out more than what Mickelson was saying. Now, I’m sure there are many people out there thinking PsA isn’t a big deal, that it’s just a matter of popping onto a drug for about a year and everything will be hunky-dory. Never mind that Enbrel, and other biologics, are powerful meds with potentially dangerous side effects. Never mind that psoriatic arthritis is different than the arthritis Grandma has in her knee, that it’s a chronic condition.

I think it’s a shame that what could have been a really great opportunity to raise awareness about immuno-arthritis and other chronic illnesses has turned into a joke, with sports writers devoting more space to Mickelson’s turn to vegetarianism than to his disease.

I hope that Mickelson’s predictions come true for him. I hope it does only take a year on Enbrel and his symptoms never come back. But even if they don’t, his PsA isn’t gone just because his joints don’t hurt. I hope Mickelson’s symptoms go away for good, but I won’t hold my breath.

awareness is contagious

I think I’m starting to develop a bit of a complex when it comes to my psoriatic arthritis. Every time I type in “psoriatic,” for example, I get the little red squigglies that indicate that either the word is spelled incorrectly or the word doesn’t exist.

Well, guess what, Microsoft and Apple: It is a word, you jerks. It certainly exists.

Of course, this pushes its way into other aspects, too. I was looking for some PsA resources on Google the other day, hoping to find something new to add to my understanding of the disease. I noticed Google found about 716,000 results. Not shabby, right?

Wrong.

I decided to type in “rheumatoid arthritis” to see how many hits I’d get: 7.89 million.

Now, I know, by the numbers, that  more people have RA than PsA. It’s hard to track down real estimates, but as best as I can gather, people with PsA number in the hundreds of thousands, while those with RA number in the millions. And I’m really not trying to downplay the seriousness of RA, nor do I wish those with RA had fewer resources available to them to cope with what they’ve got. I just wish there was more out there for those of us with psoriatic, and not rheumatoid or osteo, arthritis — a MyPsACentral would be nice (P.S. — MyRACentral is super nice! I’m not hating, I swear!)

I guess what I’m saying is it would be nice if there was the amount of information out there for those of us with psoriatic arthritis; hell, even a combined “arthritis” website with information on the various kinds — and not just osteoarthritis — would be lovely.

So, I guess I need to step up and do my part in engaging in this. And, conveniently enough, the National Psoriasis Foundation has launched a campaign, to coincide with Psoriasis Awareness Month in August, to increase the profile of psoriasis and psoriatic arthritis (which I honestly did not even know about when I started this post earlier today). Plus, there’s our good ol’ fashioned celebrity spokesperson, LeAnn Rimes and her pledge to get more of us to stop hiding.

I’m trying to do my part. I’ve signed up for the challenge to help raise awareness. The more people know about autoimmune diseases — be it rheumatoid arthritis, psoriasis, spondylitis or any of them — it helps us all. Because, really, those with RA aren’t so different from those with PsA; it’s ignorance that’s the real enemy. Everyone benefits from greater understanding.

I’m still holding out for MyPsACentral, though.

half-naked ladies

NPR’s Monkey See blog ran an interesting post about the Lane Bryant/Fox/ABC drama. If you haven’t heard (and if so, where have you been? I don’t even watch TV and I know about this!), Lane Bryant wanted to run a lingerie ad during “Dancing With the Stars” and “American Idol.” Fox, according to Lane Bryant, refused to run it, while ABC would only run it at the end of “Dancing.”

If you haven’t seen the ad, take a look at the Monkey See post. In all honesty, it’s far tamer than most Victoria’s Secret ads I’ve seen — and definitely tamer than some of the outfits worn by ladies on “Dancing With the Stars.” So, clearly that can’t be the reason behind it.

Maybe Fox and ABC don’t want to run the ad because the gorgeous model is, ahem, “full figured.” She certainly isn’t fat by any stretch of the imagination, but you can’t count her ribs and she’s got a hell of a rack stacked on top of some bodacious curves.

If that’s the case, Fox and ABC need to grow up and grow a pair. Despite some of the comments on the Monkey See post about “real women,” women come in all shapes and sizes. Why not celebrate it?

But while we’re on the topic of “real women,” that phrase count not annoy me more. *All* women are “real women.” Having curves makes you no more real than someone who is stick skinny. We all deal with the body we were given — some accept it, some hit the gym and some turn to plastic surgery. All of us are still women, regardless. Why should we pit different body types against the other? Isn’t it time, finally, at last, for women to wake up and support one another, instead of trying to see who can put the others down the hardest or the fastest?

aubrey, start the revolution!

I meant to post this awhile ago, but somehow never got around to it. It’s a guest column in The (Kinston, N.C.) Free Press, a paper I worked at for more than a year.

In it, a twenty-something mother and wife describes her battle with rheumatoid arthritis, something that she was diagnosed with less than a year ago.

Please read it, and maybe learn something from it. Everything she describes in her column is true, and it really resonated with me, anyway. Hopefully, for those of you who are healthy and don’t have to deal with this kind of thing, it will open your eyes a bit to the lonely struggles of people around you. Honestly, the judgmental attitudes and preconceived notions of what arthritis looks like can hurt more than the disease itself.