Extra, Extra! Read All About It!

Here’s a quick post about what’s new:

1. Check out my guest blog for National Chronic Invisible Illness Awareness Week.

2. “Patients for a Moment” is up at “Everything Changes”.

3. “Grand Rounds” is up at Captain Atopic.

4. And finally, I’ll be hosting Lisa Copen as a guest blogger on Monday, August 3rd.

Why I’m Not Singing The Praises Of Benlysta

I’ve gotten e-mails from multiple e-mail groups, listserves, and organizations about Benlysta. Other lupus bloggers are posting about it. Clearly there is buzz about this new drug, but I’m just not feeling it.

Maybe some of you are thinking, this is just her depression talking. Or this is her sullen personality showing itself once again.

No, actually, this is me being realistic.

Recently, I got a very fancy envelope in the mail from the rheumatology clinic. I wondered what it was, and was a little more than surprised to see staring at me a flyer for a lupus walk.

I wanted to scan the flyer in to share here, but I refuse to advertise. And I don’t appreciate having things rubbed (or thrown) in my face. This whole “direct-to-consumer” marketing has gotten a little out of hand. Don’t tell me what kind of patient I’m supposed to be…

As I’ve read some of the things that doctors are saying about Benlysta, I’m not very encouraged. It sort of reminds me of how, in 1985, right after pituitary-derived growth hormone was taken off the market because people were dying, Genentech was conveniently prepared six months later to unveil a synthetic version (and I’m not sure that has been any better, for other reasons not to be explicated here).

I think doctors, pharmaceutical companies, everyone is feeling the drain that there hasn’t been a new drug explicitly to treat lupus in over 50 years. Is this fortuitous timing? I think so. Could this be the cure? Maybe, but I think not.

I’m particularly skeptical when the company running the study of the drug refuses to release drop-out rates, and there are no negative side-effects/ incidents being reported in the news.

I think drug companies are crafty. They know how to find potential markets and exploit them. Human Genome Sciences stock soaring 277% after the news about the efficacy of drug was released is a case in point (washingtonpost.com). Honestly, at this moment, I feel like this drug is being promoted as a moneymaking scheme for big-pharma, rather than a humanitarian effort on the part of doctors and scientists to actually help patients with an incurable and often debilitating disease.

Lupus patients have been taking drugs with horrendous side-effects for years (read: methotrexate) because we’ve had no other choice. So really, there’s no great marketing reason to create a drug that’s both safe and affective. It kind of makes me feel like these companies think lupus patients are desperate, they’ll take anything. It’s also curious that nearly everything I’ve read has been the exact same thing; copy and pasted from various press releases. The only newsworthy thing about this is that it’s new.

I also find it more than a little ironic that the LFA has a link on their website, “Send Words of Appreciation to those who helped to develop BENLYSTA™ as a treatment for lupus.” You’ve got to be freaking kidding me. The drug hasn’t even gone through the final stages of trial, FDA approval is years away, we clearly haven’t heard the full negative story about this drug, and yet were getting all warm and fuzzy and shit? We’re trying to feed the medical profession’s ego. Again, I have to wonder if this is meant more to help doctors or patients. And when that answer can’t be easily parsed out, we’re in trouble.

The other thing I have to say that I find humorous is that this drug is being touted as a way to get patients off of steroids. Okay, so we all know the horror that is prednisone. But here they are, promoting this new, injectable, safe or not (we don’t know yet) drug. And the best they can offer is don’t take that, take this instead? It’s a classic fake-out, and right now, I’m not buying it.

I guess I’m also a little biased because since I’ve been feeling pretty good recently, I’m of the mind, “If it ain’t broke, don’t fix it.” And I’m sure I’ll get some hate mail about this post, but I think we need not get too ahead of ourselves here. And I don’t know about you all, but I’m not too keen on the idea of donating my body to science just yet.

Obviously I’m as jazzed as the next person with lupus that we now know that scientists are actively studying this disease. But just as people tell you not to marry the first person you meet, I don’t think we should be committing ourselves to the very first drug, either.

What Does It Mean To Live In A ‘Remission Society’?

Thus far, in the process of studying for my preliminary examination (reading 125+ articles and book chapters (and there’s another 50+ to slog through)), I’ve managed to avoid blogging about sociological notions of health and illness… until now…

In an article by Arthur W. Frank, he suggests that we are living in a ‘remission society,’ where patients are “effectively well but could never be considered cured” (163). This conception of illness flies in the face of Talcott Parsons’ notion of the “sick role,” in which the patient has that status for a limited amount of time. In Frank’s ‘remission society,’ the patient is always caught in a void between health and illness.

Further unlike Parsons, the patient, in Frank’s parlance, is seen as an active rather than passive actor. The patient, as a person, rather than relying solely on the medical profession as a means to attaining wellness, is set to the task of defining what illness means for their life, given that their life will be in a permanent state of transition from illness to health, health to illness, back and forth continuously.

Especially for those who become ill at younger ages, ones life is in a constant state of upheaval. Do I make plans for tomorrow or the next day when I don’t know how I’ll feel an hour from now? If I become “well,” will the chronic illness community reject me? If I become sick(er), will I permanently lose my status in the world of the healthy (or in my case, has that already happened)? These are incredibly difficult questions to answer, but Frank’s concept of the ‘remission society’ is useful in seeing how such questions come about in the first place.

During my most recent flare (which was two and a half weeks ago, a record for me!), I got a fever and my glands swelled. While these are typical flare symptoms for many lupus patients, this rarely happens to me. Usually when I flare, I end up with intense pain over my entire body, nausea, dizziness, and a general feeling of being unwell. Not only did my glands swell during the flare, but a week and a half after the flare, they were still swollen and incredibly painful.

So I resigned myself to going to my PCP to get it checked out. Basically, she confirmed my glands are swollen and that I just have to wait it out, that it is probably just some weird autoimmune reaction to something. I was miffed. Not a holding pattern again. I hate having to wait it out; see if it gets better, worse, or I die in the interim (not really, but, you know...). It’s just one of the many wonders of being chronically ill with a set of diseases that are so variable. It’s another not-so-subtle reminder that modern medicine can only do so much…

After working out on Sunday and Thursday, and having two relatively pain-free workouts, I’m feeling encouraged. I don’t think I’ve ever been at the point where I’ve been able to say that I’ve kicked lupus’s ass today (or this week). But it sure feels good to say it (even though I’m not sure what I did to cause it – dumb luck?). That is, with the very big caveat that I know this is likely not a permanent state of affairs.

But I have felt surprisingly good over the past few weeks. Although it seems that if I’m not feeling the lupus drain, I’m getting acutely ill. Already this summer I’ve been sick four times, each time with types of infections that I’ve never had before. This is obviously frustrating…

People, on several occasions now, have asked me why I don’t use the illness card more often to get out of things, because it is a great excuse. If only that made it bearable, if only that made it worth it. But not the best excuse in the world would be worth nausea, dizziness, unending pain, bouts of depression and anxiety, a list of medications longer than my CV…

And this takes me back to Parsons and Frank, because to me, the only people that the sick role is applicable to are those who fake illness to get out of work, school, etc. If you really want to beat a dead horse, I suppose you could say that being acutely ill does allow people, if only unconsciously, to abdicate their social responsibilities for a brief period of time. But for the chronically ill, the sick role simply doesn’t work.

For Parsons, illness is a transitory state in that one becomes ill, evades social responsibility while ill, sees the doctor to get well, and is ushered back into the world of the healthy again. For Frank, illness is a transitory state in that one is constantly negotiating the meaning of illness and health, and ones identity is intrinsically tied up in notions of what it means to be healthy and sick.

To my mind, Parsons’ notion of the sick role is found severely wanting. Frank’s notion of the ‘remission society,’ however, is relevant to me, as my own illness trajectory vacillates. As I’ve said before, I was mistaken that remission would come with flashing lights and confetti, a “coming out” party of sorts. Even with the advances of modern technology, the only empirical evidence of remission is when a battery of lab tests come back normal, or in some cases, normal enough, within the normal range, etc. But these results don’t necessarily match the way the patient feels, physically or emotionally. This makes health seem even more elusive, always just beyond reach.

And inevitably, I think the concept of a ‘remission society’ creates an even greater gulf between those who have been sick and those who haven’t. It’s like we went to different schools together. And obviously, as the explosion of chronic illnesses continues, less and less people will come to be considered “purely” healthy. How will this impact how we deal with each other as “healthy” and “sick,” and more simply, as people?
*****
(Frank, A.W. (2005). “The Remission Society.” in P. Conrad (Ed.) The Sociology of Health and Illness; Critical Perspectives. New York: Worth Publishers, pp. 163-166)

(Parsons, T. (1951). The Social System. New York: Free Press)

“Patients For A Moment,” Third Edition

The third edition of “Patients for a Moment” is up at Duncan Cross. Be sure to check it out.

Next week it will be hosted by Kairol Rosenthal (Everything Changes). You can read of Parts I and II of my review of her book.

I’ll be hosting “Patients for a Moment” on September 9. More on that later!

“Everything Changes,” Part II

“[…] Drink to all that we have lost

Mistakes we have made

Everything will change […]

- Gavin Rossdale, “Love Remains the Same”

In reading “Everything Changes,” there is one chapter in particular that stuck out to me. It is a chapter that I have circulated amongst family and friends – Chapter 3, “Single” – because it touches on a very unresolved part of my illness experience that I have been trying to make sense of.

I have been struggling for a while, feeling like I needed to write a post about sex/relationships, but it never felt like the right time, until I read Kairol’s book. And I’m trusting that my readers will not judge me, or at the very least, will not stop reading because of the details of my life I am about to share with you.

“In my first two years of living with cancer, the number of men I slept with had more than doubled” (48).

When I read this sentence, I stopped cold. This line got to me because it is me – the same thing happened to me in my first two years of living with lupus. Well, if you go from zero sexual partners in 23 years, to one or two in just a few months, it might not seem like much, but for a straight-laced person like me, it caused quite a stir.

The way the people around me were acting, you would have thought I had murdered someone. Maybe murdered myself. But this has nothing to do with self-respect. Because the truth is, I was being judged on terms that no longer applied to me. Yes, the “old” Leslie, the “healthy” Leslie, would probably have never done any of that. But it was about feeling good in a single moment, one moment without pain was worth far more than the potential consequences of my actions. Feeling wanted, needed, loved (doubtful), and even “normal,” was something that I yearned for, and that was the only place I found it. To be held, to not feel alone, to feel like someone else in the world other than myself and my immediate family had a stake in all this, that was what it was about.

Illness has, at times, clouded my judgment and filled me with a sense of urgency that I never had before. Because the fact is, illness is a major head-trip. If you’re not fully secure in who you are as a person, there’s no telling what will happen.

Kairol quotes one young adult cancer patient:

‘Cancer makes you feel really alone, and you just want to be held and feel loved. Or maybe it is a coincidence, and I’d just really want those things right now even without cancer, and it’s just part of being twenty-four. I want to matter to someone else. I want to feel like someone is thinking about me. Since being sick, I’m just looking for a bit of stability, and I think maybe having someone else to love me is it. You can’t control life so maybe you can just date and control that, but you can’t control that either’ (46).

When I first got really sick and no one could figure out what was wrong with me, I didn’t tell anyone, but the biggest thing I was concerned about was that I was going to die a virgin. And somehow, in my mind, this singular event seemed insurmountable.

I can only imagine the reaction had I ever expressed this fear out loud. It would probably have gone over as well as telling my rheumatologist that I didn’t want to be on prednisone because it made me fat and moody. A 40-something man certainly can’t understand where a 20-something woman is coming from in these terms – to him it makes me seem shallow, ridiculous, and heaven forbid, noncompliant (probably the worst thing in the world a patient can be labeled). Because apparently, when you are sick, you aren’t supposed to think about “normal” person things. You’re supposed to transcend all that, and see that life as a mere mortal is fleeting and fragile, not something that should be squandered away worrying about the things you haven’t accomplished. Just like I didn’t think anyone around me would understand that the fear of death was overshadowed by the fear of not having lived. So, when, in a moment of no thought, I decided to end my relationship with celibacy and make sure that dying a virgin wasn’t a possibility, it’s no wonder that the people in my life, the healthy people, didn’t understand the urgency and all of the emotional work that went with it. It wasn’t about sex. It was about what came with it, what came after, and unfortunately, what was very short-lived.

I used to be the one that people envied for having my shit together. Now I’m the one fighting for control of just about everything. I don’t feel like the envied one anymore. And if the people in my life haven’t realized that this isn’t about morals or character, that it isn’t about being that kind of girl, then they can get the hell out. Because if you haven’t been sick, I don’t really think it’s your place to judge.

I think when healthy people hear about a sick person engaging in behavior uncharacteristic for them, the first thing that comes to mind is risk taking. Oh, that person is sick or dying, they feel like they have nothing left to lose. But it’s not about taking risks. It’s about living, and attempting to feel like you matter, like life is worth fighting for.

It wasn’t until I turned to a complete stranger for support that anyone in my life realized that I needed anything at all. And this is my own doing, because I was scared and confused, didn’t know what to ask for, and didn’t really want to have to ask for anything at all. But the truly ironic part is that it wasn’t until this incident that anyone in my life realized how unhappy, how depressed, how scared, and how alone I had felt for nearly two years, and how truly nonexistent my coping had become.

There were a few people in my life who applauded these efforts, who said it was about damn time. But what I really needed, was something that I rarely got, which I think could only come from other sick people, is to understand that it wasn’t about sex. It was about having lived my life a certain way for 23 years, to get burned by illness, and to be left feeling like I needed to refigure things out. So I started with the new, with the untouched experiences in my old life that had hung over my head for years, thinking maybe that’s what was missing. And what I realized, is that what was really missing was a part of myself that no one, other than myself, could give me.

Kairol talks about what it’s like to find love in the face of cancer. Finding love is hard enough. Finding love in the face of illness is definitely something to envy and hold dear, if and when you find it.

Kairol quotes another patient:

‘Be a little selfish and don’t feel guilty. Tell people how you feel and be open. Remember to tell people that you love them. Don’t play games, don’t be fake, don’t try to be tough all the time’ (55).

And she, herself, says:

“[T]he most remarkable cancer patients are not those who are climbing mountains but those who have found a way to climb into bed at night and be honest with themselves about staring fear in the face” (236).

More than anything, “Everything Changes” made me realize that I have yet to really grieve about my illnesses. I tried to stay strong for everyone else around me that I forgot that maybe being strong for myself means not being strong at all. Maybe some of us never come to terms with illness. Maybe we remain forever wondering why we picked the short straw, or why our genetic makeup failed us. What I realize now is that anger – at ourselves, at G-d, at the world – is a necessary part of this process.

I have to thank Kairol for unintentionally giving voice to my story. I could not put words to this story until I read “Everything Changes.”

And I know I have wonderful readers, and I know some of you worry about me often. But I want to assure you after reading this post that I am currently working very hard on trying to be okay…

“[If] a broken heart caused cancer [or lupus, or any other disease] […]” (154), then all my friends would have understood my situation far better than they have. If illness could be explained in terms that even healthy people could really, deeply, intimately understand, well, maybe none of this would have happened in the first place. But I am attempting to live with no regrets, and to not beat myself up for the mistakes, er, I mean choices, I have made.
*****
(Rosenthal, Kairol. Everything Changes: The Insiders Guide to Cancer in Your 20s and 30s. Hoboken: John Wiley & Sons, 2009.)

“Everything Changes,” Part I

In the words of Pat Benetar, “We are young, heartache to heartache we stand.”

But illness, not love, is a battlefield…

I’d be remiss if I sat here and said that cancer and lupus, or cancer and any other chronic illness are identical, because they’re not. But the book, “Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s,” by Kairol Rosenthal, helps to shed light on the commonalities of experience that do exist when you are young and ill.

“A life that appears freakish, bizarre, and extremely unlikely to the outside world can suddenly become normal to you because, really, there is no other choice but to move forward” (14).

The book talks about illness as a “second job,” and I think that’s completely true. Illness takes up time and energy in ways that no one else realizes. It’s unfortunate beyond words that anyone has to get cancer or lupus or any other illness, but as “Everything Changes” shows, it is especially devastating to young people. I have to concur with Kairol that this is an important, invaluable, and absolutely necessary point to get across to anyone that will listen. Young people’s symptoms are taken less seriously (I’ve been there, I know), illnesses are diagnosed at later stages, and illness impacts more than just the physical.

“At our age, death is what happens if you OD, or you drink and drive, or do something stupid that you could have prevented. It doesn’t happen to you because of forces you can’t control” (22).

So I’ll say, because I’ve been asked before, lupus is not a death sentence. But it’s not a walk in the park, either. I know illness has changed me, probably even in ways that I’m not aware of. I have come to terms with the fact that the life I had planned for myself pre-lupus is not to be, and that everything is different now. Everything has changed. But I think there is a lag, and many of the people in my life are still trying to come to terms with the new me (more about this in my next post, “Everything Changes,” Part II).

This book made me feel like it was okay to embrace my bad moments – when I’m too depressed to get off the couch, or I’m kicking the fridge, saying “stupid lupus, stupid everything, stupid life” (and yes, I have done that before – why the fridge? I don’t know).

I would hope that because of our experiences, we have all evolved beyond the who has it worse mentality. This takes me back to an experience I had early on. I was receiving solumedrol infusions. I was very green at this point in the process, so I was trying to ask the infusion nurse if I was allowed to listen to my IPod. I guess she didn’t hear me, but the girl next to me, who was receiving chemo, told me that I could do whatever I needed to get through it. I was very confused, thinking to myself, you have cancer, why are you comforting me? But I think this strikes at the heart of the matter. If as sick people, especially as young people, we don’t get each other, no one else will. And this experience is one that has remained at the forefront of my mind. Being partners in illness is no small matter.

It is a wretched and lonely feeling when our lives stump and bewilder those to whom we turn to for comfort, solace, information, and support. It is utterly dumbfounding when our lives become so foreign to us that even we do not know how to best comfort ourselves” (10).

I really appreciate this book for its raw, real quality, and for the honesty that it portrays. It wasn’t easy for me to read. It often struck a cord in ways that nothing else I’ve read has. I’d find myself reading and crying, realizing that I had felt like the only one in the world to feel this away about illness; to be angry and pissed off, to feel that I had bargained with g-d and lost, to feel completely and utterly alone.

“People talk about learning to live in the moment. There are times when my present moments shine like diamonds and other times when they are stinger sharp. I think I know well how to live in the moment, and I also know how to vacation in the rich recess of escapist daydreaming. Right now, I don’t want the moment. I want to see a future. Some days I feel tethered to a six-month calendar, and I want to see farther and bigger into the distance” (239).

Illness is a very personal experience, and for most people (bloggers not included), it is usually a very private one. By letting the reader intimately into the lives of young adults with cancer – a picture that has rarely been portrayed elsewhere –this book highlights what it’s like to be a young adult, on the verge of independence, suddenly being thrown back into the hands of your parents. It explores what it means to need people when we don’t want to rely on others for anything. And it highlights, that regardless of disease, with illness comes a profound sense of change that can rock a person’s foundation to its very core.

*****

(Rosenthal, Kairol. Everything Changes: The Insiders Guide to Cancer in Your 20s and 30s. Hoboken: John Wiley & Sons, 2009.)

Sick Girl Steppin’ Out

I think, especially at this age, there is an inherent need, even when ill, to attempt to keep things as normal as possible; to attempt to live the life that any other twenty-something would be living. For me, this means being able to do all the things my girlfriends do, and not have to give a second thought to it. But leave it to illness, there’s always something there to remind me…

It’s rare that I treat myself to being pampered. And it’s rare that I talk about the “lighter” side of illness. And since I got sick, it is an even rarer occurrence for me to put a lot of effort into my appearance, unless I have a reason to do so. Maybe my friends would say I’ve “let myself go.” And maybe I’ve got some issues to work through, but that’s not the point.

The point is, an interesting article was recently brought to my attention. I’m not even going to tell you what the article was about specifically. You can Google it. But the best line in the article is, “She [some doctor] advises people who have diabetes, chronic kidney or liver disease, skin conditions such as eczema or psoriasis, or weakened immune systems to avoid waxing altogether.”

To be honest, I was a little stunned when I read this article, with it’s staunch warning to people with “weakened immune systems” (that is, unfortunately, me…). It isn’t something that would have ever crossed my mind. Why would anyone ever give a second thought to going to get a manicure, pedicure, or other salon/spa treatment? I’ve certainly heard of people getting fungal infections from unclean nail salons, but killer infections? Not so much.

I realized why this is. Sick people aren’t supposed to think about primping, let alone actually do it. It’s one thing if you’re a guest on Oprah and she rewards you with a day of luxury at a spa. It’s another to say, I’m going out of town this weekend and feel like getting a manicure and a pedicure. Or even to say, I feel like doing something nice and relaxing for myself today.

And the truth is, I’m not flexible enough to reach my toes, and my hands shake too much to really attempt a half-decent manicure on myself. So I’d rather shell out the money once in awhile to have it done by a professional…but certainly not at the expense of my health (what little I have of it, anyway).

And I’ll just go ahead and say it: I’m aware I have deformed toes. I have freakin’ arthritis people, get over it. (Now everywhere I go, everyone’s going to be looking at my feet) Oh well!

I’ve come to learn recently how important self-care can be, and no matter how selfish I may feel, that I have to be first on my list and treat myself well…or no one else will. But of course, leave it to illness to add another complication to this whole relaxation, self-care bit… I’m certainly not advocating that these kinds of activities, which might make us feel alive, human, “normal,” be thrown out the window. But…

My advice for the day? Unfortunately… Think before you primp. Because illness isn’t supposed to be fun, right? I think, in some ways, society still has yet to catch on to the fact that there are a hell of a lot of sick people in the country and the world who are attempting to live “normal” lives. There’s still that image of a “sick person” being unkempt, disheveled, miserable, and better kept out of sight, so as not to scare small children. Apparently, we’re never supposed to get out of bed in the morning, let alone get a little happy/fancy with ourselves...

“Patients For A Moment,” Round Two

The second edition of “Patients for a Moment” is up at Duncan Cross. Be sure to check it out.