“Just Snap Out Of It”

While traveling through rural Michigan by train to visit a friend, I saw a billboard that made me stop and think. The billboard read, “You never hear, ‘Snap out of it, it’s just diabetes.’ So why do some say that about depression?”

After doing a bit of detective work, I discovered that this billboard is a part of a public service announcement from www.DepressionIsReal.org. Another reads, “You’d never say, ‘It’s just cancer, get over it.’” Heart disease is also an illness used as a comparison. The television spot suggests that heart disease is like depression because the symptoms can be ignored; it’s like diabetes because it’s biological, and like cancer, it can be fatal.

In theory, the purpose of this ad is useful – trying to gain the same kind of attention toward depression that other illnesses get. But to my mind, this falls on its face.

Now why do I say that? I say that because of what the ad fails to acknowledge. I find it interesting that what isn’t mentioned is that all of these illnesses; diabetes, heart disease, cancer (sometimes), and depression are invisible. To me, that is the crux of what makes many chronic illnesses questionable. But you don’t look sick. It’s all in your head isn’t a comment reserved for depression.

I think we have all encountered people who have suggested that we could get well if we simply put our mind to it, or those who suggest that we’d be fine if we only stopped taking our medication and exercised more, etc. I have, in fact, basically had people tell me something to the effect of I have a friend who has lupus and she’s perfectly healthy. Aside from the fact that this is a complete oxymoron, the implicit message there is that I should be perfectly healthy, too, even though I have lupus. So I think that to say that people that have “recognized” illnesses are somehow not asked to account for them is absolutely, positively untrue. In fact, I think people that have chronic health problems are asked to account even more, to prove that we are actually sick, and not just attention hogs or drama queens/kings.

This ad also resonates with me because it has been discussed a lot that sometimes there can seem to be a competition in the chronic illness community as to who has it worse. I completely agree that depression deserves the recognition that this ad is trying to garner, but I do worry that it could be taken the wrong way, and sends the wrong message, even with the most well meaning of intentions.

I think I’ve come to realize that the reason why this ad rubs me the wrong way, and also, why I’ve felt pretty down on myself lately, is because I think I have unconsciously bought into this “just snap out of it” mentality. I’ve tried to ignore the recent issues that have cropped up, to no avail. The problems have gotten worse, and now I have several appointments looming ahead of me, with uncertain outcome.

And the reason I’ve let these things go is because it’s hard to be on guard all the time. In fact, it’s exhausting. To have to question every hiccup, every irregularity, to have to wonder if this new symptom is just a fluke, or the beginning of the next stage of an illness, or the beginning of a new illness...When, according to medical definition, your body has gone terribly awry, the new “normal” becomes exactly the opposite. The new “normal” is where everything is abnormal.

So, if even we tell ourselves to snap out of it, of course the healthy people in our lives are going to be wont to do it, too. It’s easy to play that game. Oh, you’ll feel better if you don’t concentrate so much on being sick all the time. Really, is that true? Because in my experience, it is far worse to go in the other direction. Once you’ve let your guard down, it’s easy to leave it down, and to leave the world of illness behind, unfortunately to the detriment of your own health. One of my friends made a good point, though: If it’s not something normal if you were healthy, then you, of all people, should definitely have it checked out. And while this is sound advice, it’s intimidating, too.

I guess the point of all of this is that even when illness is staring us in the face, even when it’s written in two and a half feet tall letters, it doesn’t means it’s done right. And all of these reminders don’t make it any easier to deal with. I know it’s there, I know I’m sick, because my body keeps reminding me…

Where Have I Been All Summer?

Where do I begin? I can’t believe it has been nearly two weeks since I last blogged…

If you thought that I’ve been notably absent this summer, you’re right. While I had intended on working on not over-committing myself, I did not do a very good job of it yet again.

After teaching a class spring term, I had to jump right into reading and studying for my preliminary examination, which I just finished today. The stack of file folders in the picture above represents all of the reading I had to do, or basically the last three months of my life.

The other big occurrence this summer is that I took a trip out to San Francisco to present a paper at the American Sociological Association annual conference. While I was out there, I also hit up Oregon to visit my aunt, uncle, cousin, and a very special blogger friend.

Pre-trip Jitters

There were a lot of firsts on this trip. This was my first time flying in eight years, and my first time flying alone. My first time in California. My first professional conference. And this was the longest time I had been away since I was diagnosed with lupus and RA.

I was not feeling very well the Thursday before I left. I woke up from a catnap to the realization that I had my mail held before my cellcept was being sent to me. I feverishly e-mailed the woman in charge of sending me my meds. To make a long story short, a $25 cab ride later, and I was able to get the cellcept in hand. Needless to say, this sent me reeling a bit, making me feel like if this were any indication of the way the trip was going to go, I was in trouble.

I was also feeling a bit worried because the two weeks preceding my trip, I found myself having symptoms that I hadn’t had since before I was on medication for lupus and RA. I wouldn’t say I was flaring exactly, but there seemed to be at least a small portion of everyday where I would just get knocked-out, either with nausea, a headache, or mind-numbing fatigue. I suppose that it could be a result of the stress of an impending trip, professional presentation, birthday, preliminary examination, etc.

I kept wishing in vain that I could leave lupus and my meds behind for the nine days I was gone. Now that would really have been a vacation…

Despite the craziness of my medication mishap on Thursday, by Friday I was feeling totally pumped. I was desperate for a change of scenery… And Saturday I was off to the West Coast…

Travelling

San Francisco

Apparently you can take the girl out of the Midwest, but you can’t take the Midwest out of the girl. I hate to say that I wasn’t super in love with San Francisco. It was very busy and incredibly fast paced. But I was able to take a trip with a friend to Sonoma, and I really enjoyed the beauty of wine country.

I got to hang out with a lot of people from my program, which was a lot of fun. It’s ironic that we have a hard time connecting up when we are all in Ann Arbor, but somehow, in San Francisco, we made it work!

Overall, my presentation went well. I have been asked to submit my paper for publication to an anthology on disability studies. I have to make a few edits on it, but it should be good to go in the next few weeks.

Oregon

Getting to see my aunt, uncle, and cousin in Oregon was really nice. They are really laid back and the pace of life is very different than it is in Michigan. I drank wine at dinner every night. I can actually say I was able to relax.

And I got to meet my friend Maria, a fellow lupus blogger (http://www.mylifeworkstoday.com/blog/). She and I chat multiple times a week, and it was great to finally meet her in person. She has been a huge help to me in learning how to live life with lupus.

My goal had been to get away and leave lupus behind. And while that was an impossibility, I was pretty surprised that I fared as well as I did. I knew that because of various occurrences this summer, a change of scenery was in order. And obviously it was much needed. Managing the medication schedule was a bit difficult, but my body seemed to cooperate, as long as I took my meds in as timely a manner as possible. Er, that is, until I got home.

I flared the worst that I have in nearly two months. And I was quickly reminded of how bad I can feel, and how emotionally distraught I can become during flares. Lucky, however, I recovered in time to take my prelim…

I realized that I hadn’t missed anything good by not flaring. But it’s hard when your body is literally battered and bruised to be optimistic about where things are going. Monday night, I sat in a hot bath and sobbed. And the worst part was that I couldn’t distinguish between the emotional and physical pain. It’s really hard for me to deal with that. But in this game of illness, it’s all about living, learning, and adapting. And sometimes we fare better than others…

So, while I sought to get away from illness, I found it staring me in the face. But I think that’s a post for another time and place…

Oh yeah, and I turned 24 while I was away! And got a new computer!

I’ve tried to write an adequate post to talk about everything that’s happened over the past few weeks and months, but I’m not sure I can do things justice just yet.

I learned a lot about myself on this trip. I learned that I can be okay on my own, and that I can manage illness to some extent. San Francisco was filled with impossibly long days, and I didn’t show myself any mercy. And, as I’ve suggested, I definitely paid for it when I came back.

On the Road Again

Then there are the things that I am less inclined to talk about. And I know what you’re thinking… there’s more that happened this summer? Is that possible? Oh yes, yes it is. And I’d really like to talk about it right now, but I can’t. I’m still trying to make sense of things myself, and I have a lot to mull over.

I’ve discovered a new mantra, though, which seems to be working very well for me. It’s something my mom came up with, and it has kind of stuck. Take the garbage and put it in the trash. Take the trash out to the curb. And leave it there. Double bag it, if you think it’s going to try and escape. Every time I find myself thinking about things that have frustrated or hurt me, things that are being given far more attention than they deserve, I say this mantra over and over to myself in my head, and it really does seem to help.

*****

Just because I haven’t been blogging, doesn’t mean that the blogosphere hasn’t been busy in my absence. Check out the latest edition of Grand Rounds and Patients For A Moment. Additionally, Kairol Rosenthal asked if she could use my post about her book as a guest post on her blog. It happened to be picked as an Editor’s Pick on salon.com I’m not even exactly sure what that means, but you can check it out here.

I’ll be heading off to spend a few days with one of my really good friends, so I’m looking forward to that. And I’m seeing a new doctor next Friday, a gastroenterologist, to see if we can get to the root of the appetite and various other issues I’ve been having lately.

That’s all for now. Just wanted to let all my loyal readers know that I’m alive and doing fairly well, and haven’t fallen off the face of earth, even though it may have appeared that way!

Where Am I Going?

I’m heading off to California for a conference and then Oregon to visit my aunt and uncle. This is my first time on a plane alone. I actually haven’t been on a plane in seven years. And this is the most traveling I’ve done since I was diagnosed with lupus and RA.

In the picture above, you can see that I have all of my meds, Biofreeze, and hand sanitizer in an airplane-approved bag. Plus I found a mini version of my pill organizer, a note card with all my medications and doses, and the dreaded masks (I love that the instructions are a mile long, and the masks say warning across the mouth). So much for being inconspicuous…

I can only imagine the stories I’ll have to share when I get back!

While I’m gone, I urge you to check out the talk show, New Way RA, and also the Arthritis Foundation’s “Show Us Your Moves” contest at the Lets Move Together campaign site.

Everyone Wants To Be A 10, But No One Wants To Be A 710

710?!?

“[…] People meditate

Hey that’s just great

Trying to find the inner you

People depend on family and friends

And other folks to pull them through […]

But these three cubic feet of bone and blood and meat are all I love and know […]”

- “One Man Guy,” Rufus Wainwright

There, I said it.

For those who aren’t lupus savvy, 710 is the diagnostic code for lupus. If you’re a lupus patient, you know that this code is as good as your name. She’s a 710.

Whatever happened to She’s a 10?

Lupus is a liability, and it ain’t pretty. To say that I am okay with this body is the overstatement of the century. To think that acceptance is going to come overnight is naïve and stupid. But to work on getting there is a whole other story. And probably the best that can be hoped for right now…

Illness is like an open wound begging to be healed, but only I can heal me…

I recently fell back on an old habit, well, maybe a habit I never really lost, of relying on others to build me up; to tell me I’m smart and beautiful and a great person, but… That’s not quite enough, is it? And you know what? It shouldn’t matter at all. What should matter is what I think. And what I think should be great.

I guess I convinced myself that one person, maybe even a certain person, could single-handedly “cure” me, but even if that person really desired to do that, it would never work. Because I’m the one who has to do the fixing. I think it’s possible for someone to make me want to be a better person, but a different, not sick person, I don’t think so. I think I got romanced into the notion that even the most unsolvable problems can be solved in the name of someone else. And now that just sounds silly.

I really struggled with writing this post. But then I had a mini-epiphany. I’ve had several conversations recently about people in my life who I’ve forgiven, some for slights that some people say are irrevocable, others for small things (some that seemed big at the time). And the truth is, we all have had people that we’ve had irreconcilable differences with. There are several people that are no longer in my life, and most likely, never will be again. And while that’s very sad, I prefer to concentrate on those who I haven’t cut out completely, regardless of what the transgression was, or who committed it.

As of late, it has become much better for both my physical and mental health if I can move on, and try not to harbor hurt, pain, anger, and resentment. And in most cases, moving on means forgiving. It certainly doesn’t mean forgetting. There are certainly good friends in my life who know they have hurt me in various ways, and some who don’t realize they have, who, while I may never forget what they did to me or I them, have forgiven.

The point is, if I can look at others and forgive all the crap, then I have to be able to look at myself and do the same. I have to be able to let go of all the crap I’ve collected over the last few years. And I probably won’t be able to do that easily, but I think a solid first step is acknowledging that it’s crap, that I can look at myself in the mirror and say, “Hey, that’s me. And I’m okay with that.” Illness and all…

A few years ago I read “Why I Wore Lipstick to My Mastectomy” by Geralyn Lucas. I wasn’t sick then, but I guess I may have always had a penchant for patient narratives. The point is, Lucas was diagnosed with breast cancer at the age of 28. At the end of the book, she gets a tattoo on her reconstructed breast and then has topless photos taken. Yes, this is a very crude summary of her story. But the point is, after this experience, she sees herself as beautiful for really the first time in her life, despite, or maybe in spite, of everything she had been through.

I’ve had several experiences that make me see myself differently, because when I look at myself in the mirror, I see a person that I’ve never seen before…

And that’s the true test.

Many of us, namely me, spend so much time obsessing over what other people think of us that we lose sight of how we feel about ourselves. Or maybe we feel so badly about ourselves that we only have others to rely on to build us up. Being a 10 is as much a mental pursuit as it is a physical one. Being ill, you can be the most important person to yourself and be unapologetic about it. Sure, people may think you are selfish, but the truth is, if you can’t put yourself on the top of your priority list when you’re ill, you’re screwed. I’ve learned this the hard way (and I’m still working on it)…

Recently, I did something for myself that may appear to some as incredibly self-serving. I asked a friend to take some pictures of me. I wanted my friend to capture me naturally; no makeup, in my own environment. What I really wanted these pictures to say is, “This is me, take me or leave me.” And I think that’s exactly what she did. Like I said, I don’t have any make-up on in the photos. But it’s really the first time that I’ve been able to look at a picture of myself and say, “Wow, that’s me, and I kind of like what I see.”

For the past two years, I really couldn’t stand looking in the mirror. When I first got sick, I was so confused, all I saw was a stranger. And then once prednisone came into my life, I really was staring at a stranger; a zit-faced, water-retaining chic. It’s like those nightmares people have about showing up at their high school reunion, but this was real, and a lot worse than I ever imagined. I had to, and not so nicely sometimes, tell friends not to tag me in photos on facebook. And no one really understood, and I never really cared to explain. So to be okay with seeing pictures of myself is a huge step from where I was before.

I guess knowing firsthand that the body is fallible, I wanted to show myself that in the face of everything, maybe I’m not as fallible as I thought. And I honestly think if I had tried to take pictures like this before all this illness stuff, I don’t think they would have come out the way they did.

If looking and feeling like a 10 were easy, then everyone would be a 10. I think the only real way to be a 10 is to be okay with yourself. The rest will follow… I think most of us desire to the best we can be; the best child, parent, sibling, friend – and the list goes on and on. Illness can definitely challenge this. And maybe I’m just getting tired of being down on myself all the time, feeling as if there’s something that I realistically could have done to prevent these illnesses from happening to me. Just as I do not want to harbor hurt, pain, anger, and resentment at people I want in my life, I no longer want to harbor hurt, pain, anger, and resentment at myself (for things that I have no control over). Because I have control over the way I feel about myself and the way I treat myself, and in the face of illness, that has become more important than it ever has before.

So, I don’t know what’s going to fix me. But I know it’s going to be me who is going to have to do the fixing. My friends say great things, and that’s awesome, but it doesn’t mean much if I don’t see what they see, and I think they must be talking about someone else.

So maybe I’m the Geralyn Lucas of lupus (because I’ve been considering getting a tattoo, but that’s a whole other story). Or maybe I’m me, trying to do what I need to do to make myself feel like more of a person of worth, rather than damaged goods. Maybe I’m finally able to look at the crap and see that it’s just that – crap.

A 10 can certainly become a 710, but can a 710 be a 10? You decide…

I have to give a shout out to my friend Rachel, who took the pictures. Honestly, I always knew Rachel was a woman of many talents, but her photography skills really blew me away. You can check out Rachel’s pictures on her site, Shadow & Soul Photography, or read up on her photographic adventures on her photo blog.

10?!?

(Photo Credit: Rachel Hyerim Sisco)

Guest Blogger: Lisa Copen

Lisa Copen joins us today as the founder of National Invisible Chronic Illness Awareness Week. This year it is September 14-20, 2009 and there are lots of ways to get involved, including a free 5-day virtual conference. Lisa is on a blog tour to help people know about the event and how it can specifically encourage you.

Hi, Lisa. Thanks for connecting with us here today at Getting Closer To Myself.

LC: Thanks so much for having me. Its wonderful to get to visit so many amazing blogs on a variety of health and illness issues. All of you who blog make such a difference in increasing awareness --not just about illnesses, but the people behind them who live with the condition and pain each day.

Thanks. Speaking of awareness, tell us about National Invisible Chronic Illness Awareness Week. That's quite a description.

LC: Yes. Often I refer to it as just Invisible Illness Week or NICIAW. Our mission is to have a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, health care professionals and government officials about the affects of living with a disease that is not visually apparent. Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness.

We hope that this week is an additional opportunity for people to use it as a catalyst to be able to discuss or blog about what it is like to live with their particular disease. They can share how they may look healthy most of the time, but are still dealing with chronic pain or uncomfortable and annoying side effects.

Explain to me what a virtual conference is.

LC: A wonderful opportunity to "attend a conference" without every having to get dressed! The main part of the Invisible Illness Week is our 5-day virtual conference--which is completely free--September 14-18. There are 20 speakers who are experts in their area and with chronic illness they will be giving a 40-minute presentation and then taking live calls. The seminars are
M-F, 4 times a day on a variety of topics: going to college, marriage, applying for disability assistance, cleaning, finding the right job, faith, preparing for surgery and many more. All are free, listened to live or later, and even downloaded from itunes to your ipod or purchased on a CD.

That sounds amazing. So, do you have last year's seminars available?

LC: They are. Before last year we used a chat room and had written transcripts, but 2008's can be listened to free from your computer, downloaded from itunes, or purchased on a CD.

I know many of us would love to opportunity to go to a 5-day conference but ironically, because of our illness, things like traveling, finances, sitting that long, etc. it's just not possible, so this is an ideal solution.

LC: Isn't it? It's kind of ironic that we began virtual conferences years ago, but now many organizations and companies are making this a trend because of the economy and costs of a real conference.

How did you get involved in the chronic illness blogging world?

LC: I had started the restministries.org web site in 1997 and so when blogging first started, I was actually too busy with the ministry work and writing for my web site to jump on the blogging bandwagon. After seeing it wasn’t going anywhere and learning how one can reach more people because of the feeds of blogs, etc., I finally started blogging maybe five years ago. It’s just in the last couple of years I have moved most of the content that used to be in the weekly HopeNotes newsletter over to the blog. I enjoy coming up with new topics and angles and having the opportunity to read all the comments from people. It’s more interactive than newsletters. My blog is chronicillnesssupport.com.

Tell us why you started Invisible Illness Week? What made you see this as necessary?

LC: Well, a few reasons. I began Rest Ministries in 1997. It's a Christian organization that serves those who live with chronic illness and the sponsor of Invisible Illness Week. I kept seeing many people who felt very alone, misunderstood, and frustrated, feeling that their illness, pain, and suffering were completely invalidated. Some people have a spouse who even doubts the existence of an illness.

I also saw lots of family members, caregivers, doctors, churches, etc. who wanted to reach out to people with illness, but they said all the wrong things. Eventually they distanced themselves from their loved ones because they just didn't understand illness or how to respond to it.

The fact that illness and pain is invisible to see can make it hard for healthy people to understand. And those with illness can easily become bitter when their loved ones believe it is being exaggerated. It makes for a sad situation all the way around and I thought communication could be a helpful first step.

People I know have explained this kind of thing to me before. It does sound familiar (i.e. my life).

LC: It does sound familiar, doesn't it? Even those of us who would say we cope pretty well with a chronic illness still have moments when our frustrations can get the best of us. It can be as simple as legally parking our car in a handicapped parking spot and someone walking by gives us "the look" of skepticism. Or maybe one of our dearest friends innocently asks, "So, you must be feeling all better now, right?" There is a big difference between being sick and having a chronic illness and most people don't grasp that difference.

So you decided to start Invisible Illness Week and address some of these issues?

LC: Yes, I saw such amazing people who survive against all odds and still had hope and faith. I wanted to give them an opportunity to encourage others who were going through depression or hopelessness.

It doesn't make a difference what illness we have, where we live, how old we are, how long ago we were diagnosed, etc. The invisibility factor of our condition often gives us more in common than any other factor of our illness. We all have much more in common than we realize.

What illness do you live with, Lisa?

LC: I was diagnosed with rheumatoid arthritis in 1993, at the age of 24. A few years after that, fibromyalgia. I've never been in remission, so I have had a difficult time of it, though I know it could have been worse. Each day is a challenge and I am on multiple medications to just try to have some quality of life and keep walking. My hands and feet are pretty deformed now and I have many surgeries in my near future. My illness has gone from being completely invisible to much more visible and it's not just the pain that bothers me now, but the loss of being able to do things, or do them with ease. Driving or unloading the dishwasher is an event because of my hands. Suddenly stepping off a curb is a challenge.

I heard that you type with just a few fingers.

LC: Yes, it's true. I use just three fingers and my two thumbs to type. One adapts. I think I still can type about 50 words a minute, but sometimes my fingers start to go numb. I have a voice program I can use, but I am a fast talker and tend to get impatient with its limitations.

How can people find out more information on how to get involved with Invisible Illness Week?

LC: Thanks for asking, because just by helping us spread the word, for example, reading and sharing about this blog post, is the perfect start to be a part of our grassroots cause. I don't have to tell you that we don't have a marketing budget! I hope people know that they are making a difference just by introducing other people to our virtual conference. And not just those who
are ill, but spouses, parents, and caregivers. Everyone knows someone who is ill. You can find everything about the week at our web site National Invisible Chronic Illness Awareness Week, and we also have some fun items like buttons, tote bags, bumper stickers, silicone bracelets that say, "Invisible Illness, Visible Hope" and awareness pins.

Our theme this year is "A Little Help Gives a Lot of Hope.

We also are taking submissions for bloggers who would like to be a guest blogger on our invisible illness week web site. It can even be a blog post you have previously posted on your blog. You can also sign up to commit to blogging about invisible illness or Invisible Illness Week on your own blog through a service we are using called Bloggers Unite. We have a Facebook Cause page. You can share the 2009 video, the Twitter "Facts" we are sending out, and items like that. Be sure to remember to inform your counselor, doctors, pastor, peers, colleagues and others about Invisible Illness Week; we have brochures for just a few dollars.

Some people call their local newspaper and share about the week, their support group, or their illness experience. Since it's listed in Chase's Annual Events, journalists can tie in the personal story with the annual event.

Has social media made a difference in how you have been able to spread the word about Invisible Illness Week?

LC: Yes! So much, it's unbelievable. It's given every person who is interested in letting people know about what is important to them (like increased awareness about an illness) a forum. We've sent out some series of tweets in the forms of lists like 20 things to say to a chronically ill person, illness facts, 20 things not to say, etc. with the twitter hashtag #iiwk09. There have been some really deep conversations at places like Facebook, spurred on from our posts. Be sure to follow us @invisibleillwk on Twitter!

Over 1600 people have joined our cause on Facebook. We're giving away prizes to people who blog and tweet on the topic.

How do you feel can chronically ill bloggers impact the chronic illness community?

LC: In my opinion, the blogging community has had one of the greatest emotional impacts for people who have a chronic illness. I tend to be a part of the patient and general “illness” blogging community, so when I recently started reading more blogs on my own disease, rheumatoid arthritis, I was amazed at just how much content there was; how many people are under 50 that I can so relate to; specific blogs about experiences I have had or treatment and surgeries I am having or considering.

There are some excellent professional style web sites and books out there for people with practically any illness, but when I am tired and mentally fatigued, I just want something simple from someone who has “been there, done that” – not the professional details with words I cannot pronounce. It’s the blogging community I turn to. And as more and more media realize this, the blogging community will only continue to grow.

I know there are a lot of people who feel so utterly alone, as if no one understands what they are going through. What do you tell these people?

LC: Honestly, if I could just sit beside them and give them a long gentle hug, I would do that first. I struggle with just listening myself; I always want to start solving the problem! But I know someone to listen to them is what most people really need.

Secondly, I would want to validate that the feelings that they are experiencing that no one understands--well, it's true. Unfortunately, their experience is unique and no one can truly know what it's like to be in their shoes. Illness can be an extremely lonely event. That said, though the illness may be a lifetime event, the isolation doesn't need to be. There are a lot of ways to build relationships with people who do understand more than they may expect, they just have yet to be discovered. If you are unable to drive to a support group, there are many online groups where you will find comfort. The social network I began is at Rest Ministries Sunroom and I recently started Illness Twitters in order to connect people who twitter about illness or health issues.

You have written a book that gives 505 ideas on how people can reach out to someone who is ill, right?

LC: Yes, its called "Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend." It's a helpful book that I refer to for ideas, even though I wrote it, because when someone I care about is hurting, it is hard to think beyond bringing them food. We also have cute little JOY cards that stand for "Just Offering You..." that look like a gift certificate. A person can fill it out with what he or she is able to do like running an errand or doing laundry.

That's a terrific idea! I would imagine that it would be easier to accept help from someone if it looked like a gift certificate.

LC: Yes, that is the idea. Groups like a support group or a women's ministry will find these perfect, but they are also nice for anyone who wants to help a friend and say, "Here is what I can do to help and a good time for me."

Well, Lisa, thank you again for joining us here today. And also for starting National Invisible Chronic Illness Awareness Week. I understand that in addition to your health challenges, you are also a wife and mom. I know it can't be easy to try to do all that you do.

LC: You are right, it isn't, but it's more than worth it! The people I meet or email each day keep me going and I have a husband who is incredibly supportive.

Thank you for hosting me here at your blog today. I hope your readers will head on over to National Invisible Chronic Illness Awareness Week and let their friends know about the free 5-day virtual conference. It's going to be a great time!

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…)