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.

Unearthing The Past As A Key To Unlocking The Future

Teaching my own course this spring has made me realize, for really the first time, that I need to be selfish and take time to do things for myself. That’s something I’ve really been struggling with. I need to give myself time to relax, to pleasure read, to rest, to breathe. I’m sure a lot of you are reading this and saying, “Duh! We’ve all told you so.” But sometimes you have to admit something to yourself before you are willing to make a change.

There have been many times over the past few years that others and myself have had to remind me that I am a young twentysomething. With illness, it’s easy to forget. I’ve always been an old soul and tend to gravitate toward people who are older than me. Even in graduate school, the majority of my friends are more advanced students. And this doesn’t bother me. It’s something that has always tended to happen. And, you know, it’s funny. I guess over the past few years, until a few months ago, I had forgotten what it was like to have fun, experiment, go a little crazy, and maybe, be happy.

The truth is, I’m not the type of person who likes to dwell on the past. I don’t like to hold grudges, although I sometimes do. But with illness, how can you move forward when you don’t know how you’ll feel tomorrow? Ultimately, life generally is a crapshoot, it’s just that illness makes you aware of it in a way that you don’t have to be otherwise.

Recently, I was catching up with a friend, who reminded me that I had made this book in undergrad of things that I hoped to accomplish. She asked if I still had it, and suggested that I take a look at, because I could probably check some things off.

The notebook is on the shelf right above my desk. It’s in plain sight, but I had totally forgotten about it until my friend mentioned it. I had to laugh at all of the lame things I haven’t done – buy red lipstick, black eyeliner, and “really” high-heeled shoes. There’s something to be said for the days when my life was a catastrophe because I hadn’t done those things.

But there are a few things I have done; bought sexy lingerie (and yes, to wear for a particular person), learned self-defense (feebly, but I tried), done karaoke…

And this has made me realize that sometimes, it’s not about being stellar at something (I tanked at karaoke), but it’s about following through. It’s about being there and present in your own life to know what you need for yourself.

I’m really grateful to my friend for reminding me of this book, and for encouraging me that there were probably things I could finally check off the list. And rather than lament the things I haven’t done, or (on occasion) those that I have, I need to celebrate the fact that given the craziness of the past two years of my life, I’m still here. I’m still standing, some days taller and stronger than others, but standing nonetheless. Just like reminding me that I’m 23, I often find others in the chronic illness community reminding me that I’ve been dealing with illness for a relatively short time. To me it feels like forever. Baby steps…

There are some things in the book, like climbing Mt. Everest or living in Chicago, that may never actually happen. But it makes me think back to Mandy Moore’s character in the movie, “A Walk To Remember,” and her list. If someone could help her be in two places at once, then I guess anything is possible. Even if we’re sick, we have to believe in the power of our dreams and our own abilities to fulfill them.

And then there are some – getting married, having children, writing a book – that I do hope that I can achieve.

It’s crazy to think back to three years ago, to the life I lived then, and to the dreams that I had. In some ways, I see the person that created this book as being pretty mature and forward thinking. When I opened it, I didn’t feel like I was climbing into the world of a stranger. It was a familiar world, in which nearly everything in the book makes perfect sense to me.

There are some things that are missing, though, that I have to wonder if they had been in the book, but ripped out in a fit of rage. Or maybe, despite the similarities I see to this “other” me, that person couldn’t conceptualize of these things the way I can and do, as a 23-year-old with lupus and rheumatoid arthritis. Because I have to wonder if all this would have happened to me then, would I have been able to survive it? Maybe there isn’t a big difference between being 20 and 22, but I’m not really sure if I could have handled all of this at an earlier time in my life.

The hardest part of illness, aside from feeling like shit, has been, as I have said many times before, the hit that my self-esteem has taken at the hands of illness. But it’s nice to see that in a tangible way, my life is moving forward. I’m not in the same place I was almost three years ago when I turned the above-pictured journal into “The Book Of Confidence.” Because as much as I needed it then, I need it now. The difference is, now I’m actually working on it.

“Patients For A Moment”

I wanted to let you all know of a new blog carnival, “Patients For A Moment” (PFAM), that is up at Duncan Cross. PFAM is a patient-centered/oriented blog carnival. Duncan suggests that the benefit of providing an outlet for patients is, “The more we’re able to engage and communicate with one another, the better off we’ll all be.” I think that’s totally true, and Duncan has done an awesome job! I’m also honored, but a little embarrassed, that Duncan has given me “pole position” for my post, “The Continuum Of Disclosure.” So be sure to check out the first edition, and consider submitting for the next.

Reality Sets In And The Odds Are Overwhelming

The reality of illness is hard to deal with. Time and again, there is something that will happen that sets off a cycle of crazy thoughts, thoughts that make illness real for me in a way that shouldn’t necessarily matter at this point.

Lab Work

My doctor e-mailed me on Friday to say that all of my tests came back within the normal range. So “we” proceed with “low dose” prednisone on flare days, and see how that works, along with my current medication regimen. You know, normal lab results should put me over the moon. But the truth is, it’s a mixed blessing – normal lab results, but still not feeling great – what’s going on?

So here’s a question. Do regular lab results mean remission? I mean, forgive me for being naïve, but I thought remission would come with bells and whistles, or a celebration of some sort. Like I’d shake my rheumatologist’s hand, maybe even give him a hug for doing such a good job, and I’d walk out the door, never to be seen or heard from in the rheumatology clinic ever again. I know remission doesn’t mean “cured,” but I thought it at least meant so little disease activity that you don’t even know you’re sick – not normal lab results, but still feeling like shit. I guess I’m living in a fantasy world of my own making. But I guess that could be said for a lot of things in my life these days…

I’ve become very visual lately. I need drawings, schematics. I need to see it to believe it! So I’ve created this table. There are four possible combinations when it comes to the way one feels and the corresponding lab results.

I think it’s pretty self-explanatory. And I think it’s totally true.

Medication

I’m pretty faithful when it comes to taking my medication, but recently I’ve started to feel overwhelmed. All four of my daily medications came up for refill at the same time, plus the addition of prednisone. So I got five prescriptions filled all at once, several of which had changed dosage or companies (Cellcept is now available as a generic, which makes my wallet happy). So as I filled in my weekly medication thingy, I felt overwhelmed for the first time in a while. Which pill is this? How many of this pill do I need to take? But the truth is, this should not overwhelm me. I’ve been adding and subtracting meds since the very beginning. But now with the daily count at eight different medications, it’s a little daunting.

And to my chagrin, as recent events have proven, prednisone, for all of its many, many flaws, really does work. I was pretty much able to recover from my most recent flare in about four hours, which is a vast improvement from four days. I do seriously hope, though, that it does not become an everyday thing, because with everything going on in my life right now, I can’t really afford the food cravings, cystic acne, moon face, and generalized bitchiness that comes with the territory.

Plus, I’m pretty sure that from the combination of spending several hours at the hospital on Wednesday, and several rides on the city bus on both Wednesday and Thursday, I’ve managed to pick up some kind of cough/cold/throat thing. Hopefully it won’t last too long, although it seems to be getting worse by the minute, which probably means an impromptu trip to the doctor. But with a whacked out immune system, so it goes…

Support Group

This illness stuff can be confusing and draining, and sometimes, we need others to help us deal. While I have found blogging to be incredibly helpful, I definitely think there is something to be said for a little old-fashioned, in-person communication. I recently found out about a support group that meets once a month around a 15-minute drive from where I live. Since I don’t drive, getting there was an adventure for me (but that’s a whole other story).

When I was feeling better, the thought of a support group wasn’t as daunting. I felt I’d be able to handle it better emotionally, maybe because I do tend to have lots of emotional ups and downs when I’m flaring. I didn’t want to have that “deer in the headlights” look that I did when I went to my first rheumatologist appointment. I guess as far as illness in concerned, I have come to associate any new experiences with fear and dread.

I contemplated not going to the support group – only a select few others and I would have known my failure to “woman up.” I was fully prepared to chicken out. Going to a support group, meeting other people with lupus, in the flesh, makes everything real – maybe even a little too real. To go to a support group and admit that I have this illness (and others), and that I need support, was something that I really didn’t feel prepared to do. So I bribed myself with a trip to the mall (which was on the way) beforehand, and I bit the bullet.

Ultimately, while I was scared and uncomfortable at first, it was incredibly valuable. I was worried that I would be the youngest one there, as I usually am in the waiting room of the rheumatology clinic. But there was a fairly good spread despite the small crowd; a 15-year old and her mom, a 20/30-something and her boyfriend, me, a 30-something, and a 50/60 year old – all female sufferers.

We swapped war stories about blood draws gone bad and prednisone craziness. It didn’t feel like a competition, and it didn’t feel like a pity party, either. It felt like a safe space to share and learn. And it’s something that I really needed to do for myself, and I would recommend it to others, if you can find a support group in your area.

Owning up to illness is not an easy thing to do, especially in the presence of people who know exactly what you’re going through. It’s easy to tell half stories and sugarcoat things for people who don’t have a clue. And because they don’t have a clue, you don’t have to feel beholden to heed their advice. But when people who have lupus give you advice, they know what they’re talking about…

*****

All of this is to say that being chronically ill calls for constant management and surveillance. With this latest edition of prednisone, I’m really being put in the driver’s seat. And if it seems to work to combat flares, I really have to make a concentrated effort to take it on the bad days, even if I don’t really want to.

And sometimes I have to put productivity aside in favor of catching up on rest. I pretty much was non-stop on Friday, so in reality, the fact that I flared Saturday should not have been such a shocker to me. And the truth is, if I don’t do the best I can to manage things, I’m going to be sick the majority of the time, and that’s no fun for anyone involved.

*****

Also, I feel like I have to give a shout out to all of my wonderful readers. There are many of you now, and I feel very lucky and humble to have so many people who keep up with my blog. With teaching my own class and flaring (that’s a loaded combination right there), I haven’t been posting as much as I used to, but you have continued to read, despite my absence. And there are so many comments coming in lately that it’s hard for me to keep up. I’m not complaining. I love it. Keep it coming! And thanks for letting me share my journey with you!

Let’s “Talk About It, Talk About It, Talk About It, Talk About It”

“Won’t you take me to Funkytown?”

Well, that’s pretty much the way I felt about this latest rheumatologist appointment, which happened yesterday. I’ve pretty much been dreading it for the past six months. At my last appointment in November, things did not go well (see my post “It’s A Numbers Game”). I was not in a good place at the time, and Doctor C appeared wholly unsympathetic to me.

Things have cropped up during this hiatus that I’ve tried to ignore, because I promised myself that since Doctor C was cutting me loose for six months, I’d do everything in my power to keep it that way. Plus, there are some downward awkward conversations I knew were going to be had; conversations that I don’t really ever want to have with anyone, let alone my rheum.

I went into this appointment thinking that I was either going to fire Doctor C or he was going to fire me. And that didn’t happen. But the truth is, I think I might get fired next time if I don’t hold up my end of the bargain. I pretty much can’t slow down until I’ve reached PhD candidacy. But that means that once I’ve passed my first prelim (fingers crossed) at the end of August, I will need to start putting myself first. How many times have I made that promise (and broken it)?

So let’s talk about symptoms. First, new; photosensitivity and mouth sores. Second, returning/worsening; dry mouth and eyes (I might as well embody what it means to be a “dead fish” in the relationship; put in a nicer way, “a fish out of water”), right hip pain and stiffness, dizzy spells, lack of appetite, and severe pain episodes.

But the truth is, while this may seem like a laundry list of symptoms, which it basically is, that’s not the point. The point is that these illnesses have become a liability, a quality of life issue. And that’s what I need to tackle at this point. It’s not so much that these individual things are so troublesome, but the fact that taken together, they are really putting a crimp in my life.

I’m trying to live the fun, exciting, carefree life that a 23-year-old should be living, but lupus and rheumatoid arthritis are making that pretty difficult right now. And that’s what I want Doctor C to understand. I’m having a hard time navigating the awkward conversations that I need to have, and I worry that if I don’t learn how to have them, I’ll become reclusive (or worse).

In the past, it has been about, simply put, keeping me functioning. It has been about reducing pain. But being away from my rheum for six months, it has become more than that. It’s about wanting to be able to live my life. Last year I was really unhappy because I felt bad nearly all the time. But this year has been a test of my physical and emotional wit. I will feel pretty good for a few weeks, and then I’ll flare violently for a few days, sometimes for reasons known to me, sometimes not. This usually spirals and sends me into a depression. Then I move on, and the cycle repeats itself.

Does Doctor C want to hear that in two years, I’ve only had two really good, nearly pain free, practically illness free weekends that I can remember? The first was my sister’s Bat Mitzvah last October. I had just entered the sick world, and it was the last time my family was all together and happy, and I wasn’t “really” sick. The second was more recent. Memorial Day 2009. And does Doctor C want to know that I wish everyday could be a throwback to that weekend? For some obvious and not so obvious reasons…

But see, these are the things that I never utter in my appointment that I wish he could know. I mean, don’t get me wrong, five days of happiness is a lot better than none. But really? Five days out of 730? That’s exactly 1%. I really hope, I have to believe that we can do better than that.

(And okay, so I’m sure there’ve been a few other good days here and there, but when I was pouring over them in my brain, that’s all I could come up with…)

I’ve had an interesting (read: strained) relationship with my rheum. But what I think it comes down to is something I’ve been struggling with a lot of people in my life lately. I don’t want a hero who is going to pick me up and carry me through life. I want someone who’s going to be there in good times and bad times, and who is going to be there to help me through the hurt, not try and spare me the hurt altogether. Because inevitably, the hero is going to trip, fall, and drop me on my ass, or more likely, my bad hip. And that does no one any good.

I guess what I’m trying to say is that I would put Doctor C in the “hero complex” category. Doctor C wants to be able to fix everything, and he can’t do that, and I know he can’t, and he knows he can’t. And as much as I would love my pre-lupus/RA life back, that’s not going to happen. So now I have to live the best I can with what I have. And I feel like in the impersonality of the rheum clinic, that gets lost a lot of the time.

But of course, there’s always the comical occurrence that happens when I’m at a rheum appointment. So, my right hip has been giving me a lot of problems. So Doctor C says he’s going to take a look. And he starts pressing on it, and when I hit the ceiling in pain he says, “Yep, you’ve got arthritis in your hip.” And I’m thinking, I could have told him that. Really, 10 plus years of med school for that? Thanks doc, really, thank you.

So again, nothing changes, except prednisone is back in the picture (and if you missed that chapter, there are many anti-prednisone posts to pick from; and I feel like I’ve finally gotten my body back in shape from the first prednisone debacle, but that’s a whole other story entirely). That’s right, the “p” word, but only on the bad pain days. We’ll see what happens… I do understand Doctor C’s point of view. More medications mean more side effects. More side effects mean, well, we all know what that means. And the words leave of absence were uttered again by my rheum. But I’ve explained to him and the readers of this blog more times than I can count why that isn’t a possibility, at least not right now.

So, I’ve been cut loose for another six months. But I won’t be stubborn and pigheaded this time. I won’t pretend that I can hold everything together on my own. And I can’t operate full speed ahead anymore – and I’ve known this for a while – but I have to own up to it now.

And because we all need a little comic relief once in awhile, movies that have “rheum” in the title…because I’ve been obsessing over this for a while now…don’t know why:

“A Rheum with a View”
“Boiler Rhuem”
“Breathing Rheum”
“Mad Rheum”
“Music From Another Rheum”
“Panic Rheum”
“The Rheum”

It’s a little scary that all these titles sound foreboding. This list is not scientific or exhaustive, so if you have any others, throw them at me!

The Continuum Of Disclosure

Lately I’ve encountered several people who have asked me to be candid with them about my illness experience. While this has been a welcome change from keeping a lot of the gory details to myself, it has also been something that has caught me off guard.

I sort of have to look at these people and say, “Are you for real?” Like, do you know the mess you’re voluntarily walking into? And are you absolutely sure you want to make that move?

On my blog, I would consider myself to be fairly open about my illness experience and the feelings and emotions that come with it. I’ve been working with some great people at the health center on campus to try and raise awareness about chronic illness and provide resources for students who may be suffering in silence. The result is a web page that was released this week:

http://www.uhs.umich.edu/resources4chronic

You can find my story there. And this doesn’t bother me – I wouldn’t have put it out there if I didn’t want people to read it. But I think if you talked to me in person, you would see that the way I talk about illness, generally, is very different.

And recently, I decided to import my blog posts to Facebook as notes. For me, I figured that this would help get some friends connected who wanted to follow but not subscribe (or whatever). The unexpected consequence of this move is that many others have started reading, as well.

I never realized that simply putting a link in your info doesn’t do much, but when you are flashing information in people’s faces, they actually start to take notice. Oops…

The thing I’m realizing is that disclosure works both ways. There is a level of disclosure I feel comfortable with, and then there is a level that the other person feels comfortable with. And admittedly, sometimes those two don’t map onto each other. And this is where the trouble lies.

There are the people, who no matter how many ways you explain, are never going to get it. Then there are others who will do research on their own, learning as much as they can so that they can speak the same the language.

To my mind, there are four general “discourses of disclosure”:

1. “I’m sick”
2. “I have such and such illness”
3. “I have such and such illness, and this means…”
4. “You asked for all the details, so I’m going to give them to you”

For me, personally, I find number one to be kind of lame. When you say that, people think you have the flu, and it just causes problems later. If I can’t tell people that I have lupus and rheumatoid arthritis by now, I’ve got other problems than illness that I should probably be dealing with.

I think, together, two and three make up a comfortable middle ground, at least for me. If I do mention more than just saying I have lupus and rheumatoid arthritis, the party line is something like, “Lupus affects your organs and rheumatoid arthritis affects your joints. It’s a pretty awesome combination. I highly recommend it.” Yes, I’m glib. But these days, that’s how I roll. If I take it all too seriously, I just get depressed.

Number four is, admittedly, used sparingly, and usually is only utilized when someone requests such information. I would never spew all the detailed garbage about my illnesses without someone asking first.

Why?

Because it ain’t sexy – and it isn’t always easy for me to talk about.

I think there is a level of maturity that comes not only with being okay with others self-disclosure, but being okay with it from yourself. Admittedly, my 20-something friends don’t want to hear about these things. I wouldn’t have either, until I got sick.

And it’s scary to talk about pain, and to try to explain to someone how you really feel when you are at your worst. It’s scary because the instinct is to pull back, and not offer too much, which in the end usually means offering very little.

But the one question I have a really hard time answering regards what I do when the pain is unbearable? I mean, there are practical things like taking a hot bath, or putting numbing gel on the area that’s in pain (or taking ibuprofen if you’re not on any other steroidal compound). And then there are things like contemplating breaking mirrors…or worse…and those aren’t the kinds of things that most people want to hear about. And they aren’t thoughts that I’m proud of and share readily.

Observe:

I went shopping with a friend this week. And after a few hours of carrying a light load of bags around the mall, my shoulder hurts like crazy. It feels like someone is picking me up only by the small amount of skin at the top of my shoulder and pinching the nerve, and it feels like someone is running the bone through a paper shredder. When I’m home later trying to read, I can’t hold a book with that arm. When did the mall become a dangerous expedition for my body, and not just my wallet? When did being able to hold a book become a small luxury?

Usually I suffer in silence. I don’t try to paint the vivid picture that I just did above, verbally to anyone. Would anyone understand? Part of me thinks gosh, I really hope they don’t. Because inevitably, the people who are exposed to number four, the purge, are also sick, or have had first hand experience with someone who is/was sick.

Life, especially life with illness, is a learning curve. I am constantly learning to adapt to life with an unpredictable, ever-evolving set of illnesses. And it’s not easy. And finding people who want to know and understand is rare. So I’m realizing that when I find those people, I can’t be quick to let them escape. While it’s easier to hold back, and provide the requisite, I’m fine, it’s liberating to have that go-to person who you can tell that you feel like shit, and they’ll help you through it.

What characteristics, aside, usually, from personal experience, do such people have? I’m not sure. I can’t say what makes some people stay when things get bad, while others run the other way. While I think that empathy and compassion are part of it, I don’t think it means that people who can’t handle the details are lacking such qualities. It simply takes a special kind person, and I hope that such people, whether they are in your life or mine, know the good they are doing and the invaluable outlet that being able to talk about such issues provides.

(And don’t you just love my stick figures? Wondering why I haven’t drawn before? Because my lack of drawing ability is rather disgusting…)

Grand Rounds Is Up At HealthBlawg

This was the first Grand Rounds in awhile that I’ve submitted to, and David Harlow at HealthBlawg makes an astute observation about my post, “Illness As The Ultimate Trump Card,” and not being able to “go home again.”

Seems to be the story of my life these days…

Anyway, check out another fabulous edition of Grand Rounds at Health Blawg.

Illness As The Ultimate Trump Card

This weekend, I had the opportunity to go up to Mackinac Island with some friends (you can find information about the Island here). I interned at the newspaper there for two summers in undergrad and have grown rather attached to the place.

The only “real life” example I can equate the Island with is the Cheers Bar. It’s the place you go where everybody knows your name. When I was there two years ago, it was like I had never left. People greeted me by name on the street, who I hadn’t seen or talked to for a year. It was a great feeling, especially because I know it is so rare to find that these days.

So as this past weekend approached, I realized that the fear and nervousness I was feeling, none of it had to do with the situation(s) I was acting upset over. In the end, it all came down to unresolved issues with illness. How was I supposed to feel, going back to a place that the last time I was there, I was working 100 hours a week, walking probably close to at least six miles a day, and not thinking that life could or would need to be any different? How do you go back to a place where the memories that exist are memories of a different person, in a different time, and maybe even a different life?

The Island felt the same as it did two years ago, despite the fact that I was too sick to visit last summer. I ran into many people I knew, who remembered me. And that was nice. It was comforting. But more than one person commented on how different I seemed. And the truth is, I’m not the same person I was when I went back to visit two years ago, or the person I was three or four years ago when I was living and working there. And maybe that’s the kicker. It’s hard to explain the perceptible changes when it’s the imperceptible ones that explain them.

And this visit, more than it reminding me of what I’ve gained, unfortunately reminds me of what I’ve lost. Health is something precious, and you don’t realize that until you don’t have it anymore. My recent flare really sent me into a depression because it made me realize how good I had felt the past few weeks, and how much I longed to feel that way again.

In some ways, the Island was the beginning of my journey with chronic illness. I’ve mentioned before that I had a severe episode of vertigo, which I have since discovered was autoimmune inner ear disease, a rare pre-cursor lupus symptom. That happened my second summer on the Island.

*****

I’ve been forced to do a lot of soul searching lately because a lot of things have been happening in my life. And the truth is, because everyone else’s judgments and opinions became so important, it became easier to fane talking about illness in favor of the status quo, in favor of me wearing a brave face rather than cracking under the pressure.

And the reason illness messed me up so much is because what little shred of self-esteem I actually believed in without other people having to tell me, was gone. And so, in looking to others, I looked for answers that I couldn’t find because none of these people could possibly relate. And in some ways, I’m glad. I had to fall pretty hard and fast to realize that if I rely solely on others to build me up, I might as well stop trying now. Especially with illness, I’m not going to be the person that some of the people in my life want me to be. And that’s not a bad thing. But they have to understand why. And that’s something I haven’t done a very good job of explaining.

And this has become a theme in my life. A 15-year friendship is in shambles. Because I’ve changed. I’m not the person I was then, and I’m not the person I was six years ago when I graduated from high school, and I’m not the same person I was two years ago when I graduated from college and thought that embarking on graduate school would be the best decision I ever made. And lately, no one is respecting my life decisions. And the real problem with this is the fact that no one has been listening very well to me the past two years. I’ve found myself more often than I would like at a level of unhappiness I never thought was possible and in a state of utter confusion. Illness can do a really good job of messing a person up. And if you are young, I think you really have to know and be secure in yourself to sustain such a heavy blow without it setting you back.

*****

We all have a trump card. We all have something we will not compromise on, and won’t demote past number one. I’ve learned this recently, the hard way. Realizing that you’ll never be higher on someone’s list than a four or a five is a pretty harsh reality. It makes you think about the things that you won’t give up, no matter who comes in and out of your life. And what I’m realizing is, for better or worse, illness is my trump card. It’s the one thing I can’t (and won’t) compromise on. But up until recently, I have been.

I don’t mean to say that illness trumps everyone else’s problems or priorities. But in the hand I’ve been dealt, illness is my “ace in the hole” (not exactly, but I’m certainly having fun with these “playing card” analogies). Getting back to the judgment idea, the one major thing that I’ve been judged on that I haven’t paid attention to are those who have rebuked my being on medication and lamented the potential problems I could have in the future from being on such powerful drugs. The thing is, if I spent my time worrying about this, I’d either be too depressed to function, or I wouldn’t be able to function at all because I would be too sick not being on medication. The moral of this story is that I can’t let other people’s judgments matter.

And it’s taken me a long time to get to the point where I could deliver the ultimatum that I’m about to, but I’ve realized that it has to be done. The people that want to stay and be in my life are going to have to do their part to attempt to understand. And the people that don’t see the need are going to have to get out. Because I can’t live forever with my trump card being the elephant in the room, the thing that everyone knows is there, but isn’t willing to talk about or acknowledge. It’s just not healthy for me, and it’s not really healthy for any relationships I hope to cultivate. So how about we all cut the crap and get real…

It’s hard to give up on people, and it’s hard to admit when someone is causing you pain, both physically and emotionally. But the truth is, no matter how I feel about a person, if they are consistently the common denominator in making me flare, they’ve got to go. Because when you are chronically ill, especially for me with lupus, relationships literally do become toxic. And my health and my life have to be worth more to me than someone else, no matter how difficult it is for me to put myself first. On the other hand, though, sometimes recognition and understanding comes from the most unexpected of places…

*****

It’s weird the times when the reminder of illness hits. A bill for blood work comes in the mail. It’s $89. I don’t have to pay it. And yet I find myself in tears. I thought I was over these phases already. Thought I was over feeling sorry for myself. But maybe the truth is, I’m never going to be over this because it’s always going to be with me.

Then there are times when the constraints are more obvious, and seem even more unfair and unacceptable. Times when I wish I could have a reprieve, if only for a few hours so that I could just feel normal. Times when I wish I could throw a rock through a window, and shatter everyone’s skewed view of who I am.

The truth is, when my friends are out living their 20-something lives, I live with the very real fear that illness-wise, things could get a lot worse before they get better. And I just want someone to get it. I want someone who will be there for me when I’m at my best and at my worst, and I want someone who I don’t have to wear the brave face with all the time. Because I’m exhausted, so tired of pretending that illness doesn’t matter and that my life hasn’t changed. And I want to know that when I can’t take out the trash (lame, I know) that there will be someone there to do it for me.

Illness makes time swirl around me, and makes me feel that everything is of great urgency and means nothing, all at the same time. And “normal” people don’t get this. They don’t spend time staring at the wall, wondering what new symptom will crop up, or what activity they’ll suddenly find themselves unable to do. They don’t have to worry about time the way I do.

*****
Sorry for the long post, but I’ve been having a hard time blogging lately, and this post really helped me get back into it and realize how beneficial blogging can be. So thanks for reading and sharing this crazy journey with me!

“It Does Not Say Lupus On My CV”

I was asked to write a guest post for lupus awareness month by my friend Maria over at My Life Works Today. The post, entitled, “It Does Not Say Lupus On My CV,” will not be posted on my blog, so be sure to hop on over to Maria’s blog to read it.

And while you are there, be sure to check out all of the other guest posts, which address various experiences with lupus.

Thanks Maria, for letting me be a part of your efforts!

The Need To Disengage

May (which is shockingly half over already!) is both lupus and rheumatoid arthritis awareness month, which is a little weird for me since I have both illnesses. I’ve been busy and I haven’t had much time to blog, but overall, I’ve sort of felt the need to distance myself from being forced to think about my illnesses.

I’ve even found myself avoiding my daily onslaught of reading blog updates. Why? I think it’s because this whole illness deal has all become a little too routine. I really have felt like I’ve been dealing with this for years, decades maybe.

Hmm…where do I begin? Let’s see… Parts of my life have become totally cliché and often seem akin to an after school special. How’s that for a one-sentence recap?

Things in my life have been weird lately. I recently started taking anxiety medication because, well, my life was kind of out of control. Everything felt overwhelming and I was in what can only be described as a constant state of “wigging out.” I was constantly on guard, waiting for the next disaster to strike.

I think my more relaxed self has become a bit snarky, maybe even too snarky for some people. But you know, I’m okay with that. Snarky is much better than drab, melancholic, depressed, unhappy, fatalistic – you pick the adjective.

Certainly, I’m not thrilled to have added a new medication to my ever-expanding repertoire. The downside to this latest development is that there are more side effects that I have to worry about and pay attention to. But all in all, I’d say that this was a successful move on my part. And I have a feeling that if you knew me in person before and saw me now, you’d say I seem more “chill” than I did before (at least I hope you would).

More than anything, though, this experience has made me realize that I need a vacation. Then I need to come back and become re-engaged. While I think that an occasional dose of escapism can be helpful, full on escapism can be detrimental. I need to be in control of things that I do have some modicum of control over.

Last year was so completely and utterly consumed by illness because I knew nothing else. I was walking around in pain, sick all the time. In some ways, it’s hard for me to reflect on that time because I’m really not sure how I made it through.

It’s funny when you start writing a blog post and then reality sets you straight. I’ve become adept at knowing that I have a certain window of time for each medication I take that I can flub up and still feel okay. I’m not running to my rheumatologist every time a new symptom crops up. I’m feeling more independent. And while all of this is true, yesterday I was hit by a flare that seemed to come out of nowhere. The nausea that ko-ed me on the couch in the morning didn’t clue me in. The unbearable fatigue that caused me to nap for two and a half hours didn’t either. It wasn’t until I woke up from the nap and my whole body was in pain to realize that I was flaring. And this is a bit frustrating because it makes life difficult – the lack of spontaneity that being chronically ill allows is something that I am still struggling with.

It’s times when I am caught totally unaware by a flare that I am socked back into reality, that I realize I can’t ignore my illnesses. It’s funny because I was never spontaneous before and it didn’t bother me. It’s like one of my favorite songs says, “Don’t it always seem to go/That you don’t know what you got till it’s gone.” But anyway, now that I have things and people in my life, reasons to be spontaneous for, it’s frustrating when I can’t be. And it’s conversations about that, which I dread. Where do I begin? How do I make someone understand that I can’t be up until 3 a.m., no matter how much I want to be? How do I explain that I look healthy, but that a lot of times, my immune system is wigging out? How do I get them to understand the connection between my physical and emotional pain? And how do I explain the disconnect between the two that sometimes occurs?

There are a lot of people in my life as of late who refuse to talk about issues. And at some point, the viability of each of those relationships is going to come into question. And in some ways, I think this is sort of a smaller version of the way my entire life is right now. At some point, I’m going to have to full thrust, grab my life by the balls and look at it for what it is. Just like these relationships are going to have to get unzipped and opened up, or thrown out. I’m going to have to get unzipped and open up to myself.

At some point, I will have to have the internal conversation with myself that goes something like Yo, Leslie. You have lupus and rheumatoid arthritis. Life is doable, but you have to acknowledge lupus and rheumatoid arthritis before they are breathing down your ass and knocking you off your feet.

Quite honestly, this conversation scares the hell out of me, because I know that not only am I going to lose a part of myself with this admission, but by trying to explain my illnesses, I’m going to lose others, as well. And I know I shouldn’t want people in my life who are going to bring me down or refuse to understand, but I’ve acted thus far as if these conversations don’t need to happen; that relationships wouldn’t have to change and that life would be easier by avoiding the subject altogether. Now I know that’s not true…

The question is no longer Do I stay or do I go?, because quite frankly, that’s not an option. It also isn’t whether these illnesses stay or go, because I’ve got them, so now I have to deal with them. The question is whether I live my life with illness at the forefront of my mind and get so bogged down that I can’t think about anything else, or whether I live well with certain constraints and hope that the people I decide to surround myself with attempt to understand and are willing to accept that this is the way my life has to be. Because clearly, avoiding the subject altogether is neither healthy nor productive. In fact, it’s just plain stupid.

I’m not going to lie and say that on the really bad days I won’t disagree with every word I’ve written here, because I probably will. But the first step in getting your shit together is admitting that you don’t have it together at all.

I can’t say right now when these conversations will happen or the form they will take, but I hope that the people they need to happen with can handle them. Sometimes I think we all need to take a step back, disengage and re-energize, in order to get back in, reengage, and face reality head on, no matter how hard reality is to face.

Learning To Stand On My Own

“Oh, why you look so sad? Tears are in your eyes […]

Don’t be ashamed to cry, let me see you through

Cause I’ve seen the dark side too.

When the night falls on you, you don’t know what to do,

Nothing you confess could make me love you less

I’ll stand by you, I’ll stand by you, won’t let nobody hurt you,

I’ll stand by you.

So, if you’re mad get mad, don’t hold it all inside,

Come on and talk to me now.

And hey, what you got to hide? I get angry too

But I’m a lot like you.

When you’re standing at the crossroads, don’t know which path to choose,

Let me come along, cause even if your wrong

I’ll stand by you, I’ll stand by you, won’t let nobody hurt you,
I’ll stand by you”

- “I’ll Stand By You,” The Pretenders

*****

“When the daylight’s gone and you’re on your own
And you need a friend just to be around

I will comfort you, I will take your hand

And I’ll pull you through, I will understand

And you know that

I'll be at your side, there’s no need to worry

Together we’ll survive through the haste and hurry

I’ll be at your side

If you feel like you’re alone, and you’ve nowhere to turn

I’ll be at your side”

- “I’ll Be At Your Side,” The Corrs

*****

I’d be lying if I said that this hasn’t been a difficult couple of months. Nearly four months ago to the day, my cousin died from radiation-induced dementia, a cousin that I had become close to because, as I’ve said before, we were “partners in illness.” This weekend was his daughter’s Bat Mitzvah. I went home to “celebrate,” but it was difficult. I know that Jeff was the type of person who would have wanted the party to happen, but it was hard to celebrate when there was such a deep void.

My cousin Cindy (Jeff’s wife) is incredible. She’s so strong on the outside, but I know on the inside she’s crumbling. And in many ways, I relate to her. I feel like I put the brave face on a lot of the time, but inside, I feel lost, hurt, and scared. There are times when I have cracked, when I have let the hurt show. Some wounds aren’t as quick to heal, as we would like to believe…

Aside from losing Jeff, the past few years have been spent dealing with a lot of turmoil; losing family, losing friends, losing my health, and at times, losing myself. Some people are in our lives for a brief time to teach us something about life that could only be learned through them. Others show us brief glimpses into ourselves and the people we want to become. Others still are in our lives for the long haul; they aren’t quick to leave. And some you can’t get rid of, no matter how hard you try (LOL!)…

I’m realizing that one of the most difficult parts of growing up is learning that it’s not as important to land on two feet, as it is, sometimes, to stand on your own. And to sometimes admit that you’re powerless to change certain aspects of your life, like illness, no matter how hard you try.

Most of the time, when I tell my friends things, it’s not so much for advice as it is for commiseration. If I’m excited about something, no matter how unexpected or off the wall it may seem, be happy with/for me. There have been some unfair judgments as of late, from people I never would have expected. People who have known me for years and years, and who have judged me on terms that I no longer feel I am capable of living up to.

I never realized that over a year of unknown illness could be easier than the first real year of actually dealing with illness as a reality. This year has been a difficult one. I feel as if school went by without me accomplishing much at all.

I can’t help but feel that many of my closest friends have gotten the short end of the stick and that over the past (almost) two years, I’ve taken more than I have been able to give. My life has been filled with physical and emotional upheaval, which at times has felt like more than I could handle.

And for those newer in my life, I often wish that they could have known me before, pre-illness. But since that’s not possible, I guess they’ll have to see beyond the walls that I’ve become so adept at putting up.

I’m grateful to everyone in my life in more than words can say, for the love and support, and the laughter and the tears, but there are some things that I have to do on my own. And I know that many people might not always agree, but I ask that you respect my choices and be confident that I know what is best for myself.

I have changed a lot in the past two years – surprised my friends in ways that no one, including myself, could have ever suspected. There are some things that have happened over the past several months that will probably never be talked about here. But the truth is, illness made me realize that life is too short to be flat-line all the time. Because lately, that’s how I’ve come to feel. Until recently, my world has been a dismal shade of gray. I’ve had to bribe myself to get off the couch. This has never happened to me before, and this is not the person I want to be.

In some ways, much of this is late-bloomer rebellion. But in other ways, it’s because I am still at the anger stage of coping. Some days I’m just plain pissed off…at everything and everyone…

I’ve realized as of late that I have done all I can to convince myself that illness won’t change my life. But at some point, the power of “positive thinking” turns into denial, which in turn becomes self-defeating. And I can no longer be that self-defeating person.

While I have always relied on others to boost me up, as many have, it’s time that I do some of the self-esteem boosting myself. It’s time that the chapter of my life spent dangling between young adult and adult comes to a close, and that I begin to live my life as an adult, making the big decisions for myself.

I’m saying goodbye to the old me and saying hello to the new me. Most of the changes are on the inside, but hopefully they’ll show a bit on the outside, too.

Good friends are hard to find, and even though many of us are geographically farther apart, you are still close to my heart, and I’m not sure I say often enough how much I appreciate those of you who have stood by me, and attempted to understand.

But the reality is that you aren’t always going to understand my decisions or my thought processes. But you have to trust that I know what is best for myself. In a lot of ways, I don’t really know who the hell I am. And that is something only I can figure out.

I’ve been working through a lot lately, realizing that I have been pretty depressed, and trying to have a more positive outlook on things. What I’ve realized recently is that chronic illness is just one of the many journeys that my life will take me on. I’m 23 years old. This isn’t the end. This is only the beginning.

*****

On a slightly unrelated note, I haven’t been blogging that much because I’m teaching a class spring term, which meets three days a week and is totally exhausting. I’ve also had some medication changes, which is keeping things interesting, as always. But more about all that another time!

The Struggle For Recognition

On the journey that is chronic illness, there are many struggles to be had. To me, the two biggest are the hard-won battles against ourselves and others.

I have been fighting with myself for over a year now, trying to make myself understand and recognize the fact that I am sick, that my life is different than it was pre-illness, and that it has to be that way if I am going to survive. This hasn’t been an easy task. But recently, I’ve forced myself to take part in activities that are illness related.

I was told at a meeting recently that for all intents and purposes, I could go without disclosing my illnesses if I really wanted to. And while that is true, and appealing in many ways, it seems wrong to simply sit idly by if I can prevent others from having the struggles that I’ve had.

And realistically, my health is pretty good at the moment, with a few flares here and there, which are mainly self-induced. Because I know what these diseases can do to people, if I have the strength to work on these projects now, I should.

After all, if we’re not willing to speak for ourselves, who else will?

*****

Last Saturday, a friend of mine and I completed the Arthritis Walk. We walked three miles in 80-degree weather. But it was an important step for me in acknowledging that my life has changed. Last year, I briefly considered the Arthritis Walk, but it was happening just a few weeks after I was diagnosed, and I didn’t feel physically or mentally able to do it. This year, though, I was determined. And I hope to put together a bigger team for next year.

I also attended the Fifth Annual Chronic Illness and Postsecondary Educational Symposium at DePaul University, where I presented on “Personal Problems As Public Issues: Dealing with Chronic Illness in the Academy.” You can access a PDF version of my presentation here.

Much of my presentation addresses what I have been working on in terms of chronic illness advocacy stuff here on campus. The projects are somewhat slow going. But I guess that’s what happens when trying to navigate the red tape of bureaucracy.

The keynote speaker at the Symposium, Karen McCulloh, who is the Executive Director of Disabilityworks at the Chicagoland Chamber of Commerce (http://www.disabilityworks.org/), was incredible. McCulloh has Multiple Sclerosis, and has severe vision and hearing problems as a result.

I so wish that other schools could have programs like DePaul’s Chronic Illness Initiative, which facilitates the successful education of students with chronic illness.

I definitely felt overwhelmed at times. So many people doing incredible things despite illness. There were times during the day that I wanted to escape to have a good cry. A lot of positive energy has been released from a lot of crappy experiences. It was amazing to see the physical and mental toll that illness has taken on people younger than me.

Overall, the conference was a good experience. Plus, I got to meet fellow chronic illness bloggers Laurie Edwards (A Chronic Dose) and Jenni Prokopy (Chronic Babe).

More than anything, though, I appreciated being in an environment where I didn’t have to explain everything, where I could just be myself. I still have this awful bruise from my blood draw over a week ago, and if I would have been presenting anywhere else, I probably would have made a point to cover it up somehow. But as I was getting dressed for the conference, I thought to myself: These are my people. I don’t have to worry about that. And I didn’t. And it was nice.

Even now as I sit here writing this, my arms are hating me after a long day of carrying my few purchases up and down Michigan Avenue. And it’s reminders like this that hammer home the point that I’m sick. The change of scenery, though, was much needed and very much appreciated.

*****

Recently, one of my good friends was ill and she called to tell me how strong she thinks I am because she couldn’t imagine having to be productive when feeling as bad as she did for any protracted length of time. This is one of those moments of connection that are rare. As McCulloh said in her speech, “We don’t know how much strength we have until we are called upon to use it.” I think this is very true. And sometimes, I don’t think we recognize the strength we have even after it has been deployed.

She also said, “We will always be in the position to educate.” I think this is true, as well. For chronically ill people, everyday is an example of continuing education. We try and stay up-to-date on information regarding our illnesses, we try and meet people who are like us, and we try to educate those around us. At times, this can be exhausting. But the truth is, we don’t fight illnesses. We fight the ignorance of people who only worry about issues that directly impact them. And the truth is, at one point or another, everyone’s lives will, in some way, be impacted by chronic illness. It might not be your issue today, but it might be your reality tomorrow…

Just thought I’d put it out there that today, May 1st, marks the beginning of Lupus Awareness Month, so it’s very fitting to be engaging in the struggle for recognition.

And don’t forget to check out this week’s Grand Rounds, which was hosted by Kerri from Six Until Me, and includes one of my posts.

“Butterfly Girl”

I haven’t posted a song in a long time, but I think this one is so amazing. Plus, since the butterfly is the symbol of lupus, I thought some of you would appreciate it.

On a side note, I’ll be out of town for about a week, so look for updates when I get back!

“Butterfly Girl” by Jaylene Johnson:

“Do you only remember the way you used to be
Full of fear and doubt and insecurity
Taking things that people said to build a web around you
Thinking you’d be safe in that place

I know you’re frightened and your wings are frail
But summer’s here and you’ve outgrown your silky veil
The walls of your cocoon have left no room for breathing
So break free
Break free

Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl

Don’t you know (that) you’re a precious miracle
Suffering transformed to something wonderful
All the things that had you bound have only made you stronger
So trust me and fly
Trust me and fly

Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl

Butterfly Girl
Don’t you know you’re beautiful by now
Too long in hiding
Free to shine girl
Time to spread your wings
And show your colors to the world
Butterfly Girl

Don’t you know you’re beautiful
You’re beautiful
Don’t you know you’re beautiful”

From the album, “Finding Beautiful”