Happy Holidays Everyone!

Just wanted to wish everyone a very happy and *healthy* holiday season and a wonderful 2009! Posts will resume as soon as I am back from break!

How Do You Measure A Year?

“525,600 minutes
525,000
moments so dear.
525,600 minutes
How do you measure, measure a year?
In daylights, in sunsets, in midnights, in cups of coffee.
In inches, in miles, in laughter, in strife.
In 525,600 minutes
How do you measure
a year in the life?”

When you’re chronically ill, time can play tricks on you. I was thinking yesterday about how good I’ve been feeling and how long it has been since my last rheum appointment, only to realize that it was only a month ago to the day of my last visit. Not so long ago after all. Especially since I’ve been known to plateau in the feeling good department after about a month.

Being chronically ill also makes you mark milestones differently. As I prepared to celebrate Thanksgiving with my family, I couldn’t help but think back to Thanksgiving 2007. I had my CT scan the night I was going home for Thanksgiving.

And now, as I prepare to head home for the holidays, I think back to last year, and my impending (first) rheum appointment at the beginning of January, and all of the unknowns that lay ahead of me at that point in time.

And maybe that’s why I’m not really in the holiday spirit this year. Lately, everything feels like too much work. But maybe it’s more about the fact that things are different now. The moments in my life that signify the holidays are no longer things associated with the holidays, but things associated with illness.

I remember in those “first months,” especially October 2007 through January 2008, standing in the shower (most mornings, when I was feeling well enough), hugging myself and crying. Like a little girl who lost her favorite doll, what seems like the most important thing in the world, I was worried that I was losing… my life.

Physically and emotionally wounded and in pain, I would stand there, waiting for a sign that things would get better or worse. Either way, I wanted and needed to know.

Looking back now, what seemed like the worst then, undoubtedly wasn’t and still isn’t the worst that life has to offer me. But I think about everything that I’ve been through in the past year, with all of the ups and downs, all of the back and forth, all of this:

30+ doctors appointments

40 prescriptions

2,200+ pills

$14,100+ of tests, and blood work

(Thank goodness for insurance, although that figure doesn’t include appointment and prescription co-pays!)

(If this were a credit card commercial, I think the word “priceless” would come after all those numbers. But priceless what?)

(Yes, I am this crazy and anal that I’ve kept track of all of this stuff to the point that these numbers were practically at my fingertips)

And it’s honestly hard for me to believe that all of this is real and happening to me.

I guess my penchant for keeping all of the prescription bottles is that I want to have something to show for the trials and tribulations of the last year and a half. Aside from the emotional scars, there has to be something tangible to take away from this.

I do think that this has been a time of immense personal growth, but it seems like a big price to pay for wisdom. I guess that’s life.

“525,600 minutes-
How do you measure the life
of a woman or a man?
In truth that she learned,
or in times that he cried.
In bridges he burned,
or the way that she died”

So, how do you measure a year?

*****
Larson, Jonathan. “Seasons of Love.” Rent. Warner Brothers Records, 2005.

Grand Rounds: The Year's Best Posts

Check out this week’s edition of Grand Rounds over at Laurie Edwards’ blog A Chronic Dose. Laurie presents her picks for the best health-related blog posts of 2008. (And mine is one of them!!!)

GCTM’s Top 13 Best Posts of 2008

When I read Laurie Edwards’s concept for Grand Rounds, I really wanted to submit something. But where to begin? I’ve only been blogging since April, but there are so many posts to pick from.

So, I decided to jump in headfirst and re-read most of the posts that I have written. It was tough deciding on these posts, especially the top one, but here are the top 13 (because that’s how many I picked) best posts:

13. "Coming Out"
12. Why Does Hurt, Hurt?
11. The Secrets We Keep, The Lies We Tell
10. Unloading
9. Would You Rather Be A good, Sick Person, Or A Healthy, Bad Person?
8. Making The Choice And Facing The Consequences
7. Left Of Center
6. “Illness As Metaphor” For Life
5. Forced Disclosure And The Battle Within
4. To Heck With "Normal"
3. The Hospital As “Pick-Up Joint”
2. How Do You Get Your Doctors To Talk To Each Other?

And the winner is…

1. “First Do No Harm”

It’s funny (and coincidental) that so many of these posts turned out to be ones that were submitted for Grand Rounds (at least I’m consistent) and that the number one post happens to have “first” in the title.

I’ve learned a lot about others around me and myself over the last eight months that I’ve been blogging. But it was really interesting to go back and re-read many of my posts, to see if I agreed with everything that I said, and that the thoughts and feelings still apply today. For the most part, they do.

There are common issues throughout the posts, some more obvious than others. I talk about the obvious things; school, doctor’s appointments, etc. But I also talk a lot about desperately wanting to be healthy again, and what it feels like, physically and emotionally, to be ill (abnormal).

I also notice that there is a different tone to my posts. The older ones are much more tentative. I’m clearly unsure if I have the right to own up to my illnesses (or if I even want to), to consider myself an “expert” (as in I have firsthand experience) on the topic of chronic illness.

I’m sort of amazed at my candidness. But there were, and still are, times when this blog is all I have to turn to. Sometimes I can’t believe how coherent my thoughts come across. At other times, I can’t believe how abstract and nonsensical I can be.

I feel like I’ve come a long way in the past eight months and I have many of the people I’ve met through blogging to thank for that. I won’t name names here, but you all know who you are and how much you are appreciated. If it weren’t for the readers of this blog, there wouldn’t even be a favorite post, let alone a list of 13 of them.

Comment on which post is your favorite, and feel free to mention one that isn’t on my list!

Tis The Season For Retail Therapy

Let’s admit that we all have weaknesses - chocolate, shopping, others that can’t be mentioned here...

Lately, I’ve found comfort in retail therapy. If I’m feeling really upset, I’ll just hop online and buy something to make myself feel better. The best part of it is that I can order things from the comfort of my apartment (the comfort of my own chair, really). Even though it’s delayed gratification, there is an immense amount of anticipation waiting for said purchases to arrive at my door (give me a little credit – I do have some self control).

I am ashamed to say that on occasion, however, I have forgotten about purchases and only remember them once my credit card bill comes. My spending isn’t out of control, but the lack of recall bothers me.

Anyway, I have long lamented the idea of clothes shopping. But shoes are another thing entirely. And lately, my purchases have been of the more practical (but fun) nature. Observe:

My awesome rain boots!

My puffy, pink boots. They kind of remind me of Wonder Woman’s boots, but lately, I need all the girl power I can get!


And finally… My new, gray Kangaroos. I have two other pairs of these in wild colors, but I needed a more everyday, neutral pair.

I have small feet and it’s hard for me to buy shoes, so these three pairs are a major jackpot.

I am aware that this is not the best coping skill – but I’m trying to limit the rest of my spending to holiday gifts. Retail therapy for me and a gift for someone else. Does it get any better than that?

There may be some truth to Paolo Nutini’s song “New Shoes,” afterall. “Hey, I put some new shoes on/And suddenly everything is right.” Maybe?

"Writing Out The Storm"

I bought the book, “Writing Out the Storm” by Barbara Abercrombie several months ago, but with the craziness of school and everything else, I only just finished it.

While the personal story of Abercrombie that is weaved throughout the book focuses on breast cancer, I would recommend this book to a general audience, specifically those dealing with chronic illness.

The book chronicles a writing group that Abercrombie created, but what I love about it is that she provides writing exercises about how to deal with, talk about, and cope with illness.

She suggests “writing as therapy” (xii), as “a tool for finding voice in a situation that leaves you feeling as if you have no control, no voice” (xii). She also suggests writing, in some ways, as an escape from the goings on of the present moment: “If I keep writing, I won’t have to think about why I’m here” (1).

For instance, one of the many writing exercises she suggests is, “Write about people’s reactions when you tell them the truth. Write about the consequences of reaching out – or not reaching out” (24). Disclosure. We can all relate to this.

I love the way Abercrombie conceptualizes of illness and the way in which she writes about her own ordeal. She says, “The hardest thing is to leave yourself, the innocent, healthy you that never before had to face her own mortality, at the border. That old relationship with your body, careless but friendly, taken for granted, suddenly ends. Your body becomes enemy territory” (39).

Of why it’s important to write your illness story, Abercrombie suggests having “Faith that there is meaning in each breath you take and in each small detail of your life and that this is worth writing about. Faith that others will find comfort and connection in your story” (145).

I realized through reading this book that blogging is truly a useful exercise for those of us who are chronically ill because it serves a dual purpose. It’s not just the people we meet along the way who offer comfort and support, but it is also our own abilities to tell our stories and put into words our deepest thoughts and feelings and being willing to share those with others – although writing and not sharing is fine, too!

This book has certainly helped me conceptualize of my illnesses in new and different ways, sometimes abstractly, sometimes concretely. And I have tried to find other books like this one, but I haven’t been able to. I’m also trying to sort through my own writing that has come from the suggestions in this book. Maybe I’ll post something when I get my thoughts together.
*****
(Abercrombie, Barbara. Writing Out The Storm. New York: St. Martin’s Griffin, 2002.)

Peppermint Brownies

I went to a party Friday night and made brownies for the occasion. It has been so long since I cooked, I really had no idea how this experimental recipe was going to turn out. But it was a success.

Nothing settles a crummy weekend like chocolate! (plus they are almost guilt free - seriously)!

There’s a whole bag of Starlight mints on top of those babies. Too bad all of the pan smacking came before all the drama…

And I’ll admit, I was feeling a little festive.

(My camera is still out of commission. Thanks D for photographing!)

When Asking For Help Is Useful And Victim Blaming Is Not

The problem with feeling better is that it doesn’t mean I’m back to my old self, even though I settle comfortably back into my old routines of not enough food and too little rest.

For the past few weeks, I’ve been feeling markedly better. And then, Tuesday was very busy and at 8 p.m., as my head started to pound and I couldn’t see straight, I realized that I had forgotten to take my evening cellcept, which I usually take around 5 p.m.

Realizing that if I was going to get any work done after class, I needed to take the cellcept to get rid of the headache, but had to take the cellcept on a not so empty stomach. (Notice that I was worried more about not being able to get work done than about not taking my medication…) Needless to say, I ended up with a horrible headache, nauseous and dizzy, suddenly remembering the feeling that I hated so much when I was really sick – being plastered to a wall, waiting for someone to scrape me off of it – and of course, there was no one there to talk me down.

Unfortunately, this was a good lesson. Except that the week got progressively crazier. I came back from Thanksgiving behind on everything. Somehow, I managed to grade 47 term papers in two and a half days. But of course, that meant that I sacrificed a lot of sleep to do that. So much, in fact, that I completely forgot to take my GERD medication one day, and made the decision on two occasions not to take the flexeril because I wasn’t going to be able to sleep enough to fully recover from the haze that it puts me in. For instance, I went to bed at 1 a.m. on Thursday to be up at 6 a.m. to get ready to teach. I didn’t sleep well, though, so I probably go less than four hours sleep.

So, I’ve been a pretty bad patient this past week, which only goes to prove Doctor C right that grad school and chronic illness don’t mix. This has been, by far, the most stressful part of this semester, and my medical routine went right out the window. But I am somewhat impressed with myself that I’m finally at a point where I know when my medication is going to do me more harm than good. Or I’m at a point where I no longer care…

Of course, all of this rebelliousness isn’t without self-loathing. It immediately started the cycle of self-defeating thoughts. If only I had taken the cellcept when I was supposed to. If only I were a better patient, student, etc., etc… Then what? I wouldn’t be sick? The problem with this kind of thinking is that it doesn’t lead to anywhere good.

The other thing is that just because I feel better, doesn’t mean I feel like I fit into the world any better. When I was feeling bad, I actively tried to hide it by plastering on a fake smile. Now that I’m feeling good, I feel like I’m doing the same thing. It’s all a façade. Happiness doesn’t come in pill bottles. Sick is sick…

On the school front, aside from trying to survive the last few days of the semester, things have fallen into place in my favor for next semester, so it looks like I may be attempting to take things a little easier. Sometimes asking for help is necessary because it means saving your own ass…

So, as the New Year approaches (more quickly than we’d think), while some people will try and shed pounds or adopt new forms of spirituality, I am going to attempt to cut down on my commitments. This isn’t going to be an easy thing to do, as I am a “yes” woman. But it’s necessary.

Just call this identity crisis two million and one. I’m not surprised. Are you?

Sometimes, denial is a good thing…

A Little Shameless Self Promotion

Wow, I am so behind on life at the moment, so this is going to be a really quick post.

Check out last week’s Grand Rounds, hosted by Canadian Medicine. It’s a very diverse edition of Grand Rounds and features a post by yours truly.

Also, I contacted Ellyn Spragins, the author of “What I Know Now: Letters to My Younger Self”. I shared the letter I wrote to myself with her and she asked if she could publish it on her site. Check out my letter! Thanks, Ellyn!

Once my life calms down a bit in terms of workload, I’ll be back on the blogging circuit.

"Feeling Strangely Fine"

“At night she spreads her wings

She dreams of bigger things

She floats above the town

She sings without a sound”

- “She Spreads Her Wings,” Semisonic

*****

“I spread my wings and I learn how to fly

I’ll do what it takes til’ I touch the sky

And I’ll make a wish

Take a chance

Make a change

And breakaway”

- “Breakaway,” Kelly Clarkson

The last few days I’ve been very busy with work and other things, mainly because I could. I’ve actually started to feel like my “old” self again, although this has made me fall quickly into habits that I should still be avoiding, even though I’m feeling better (like organizing at two in the morning).

But it’s strange. I was feeling pretty bad when I wrote my last post about my doctor’s appointment, which turned out not to go as I had planned. But I’ve come to the realization that Doctor C and I are never going to understand each other completely. And we’ll both just have to deal.

I think that what frustrated me the most is that in the beginning, I was basically forced into taking medication. Granted, no one had to shove it down my throat, but I was pretty unsure about the whole thing. And now, I was primed and ready to go for new medication, but Doctor C obviously had other plans.

There has also been some movement in the right direction by my department, as there seemed to be a lapse in communication, which I alerted those involved to (and the situation was resolved).

I’ve also made space in my life for things that I had sort of closed the door to, things that I probably wouldn’t really have even considered pre-illness.

It’s odd to think how quickly things can change, sometimes for better, sometimes worse. And it’s crazy to realize that, shockingly (I’ll admit), life does go on despite illness. I never thought I’d say that (and I bet you didn’t think you’d ever hear me say it), but I am saying it. And I’m happy to be saying it!

When I look in the mirror, I’m beginning to recognize the person that stares back at me. Me! Or maybe I’m beginning to be okay with that person, cranky body and all. I feel like I’ve shed some layers or baggage or whatever you want to call it. For the first time in a while, I think I can say that I’m happy, that despite the aches and pains, life is more good than bad at the moment.

For me, illness has forced me to become more spontaneous, to let things go, and to not take things so seriously. I’ve learned that some things don’t need as much attention as I’ve given them, and others need more attention than I’d previously thought or wanted to admit (self-care, ahem (cough), ahem (cough)).

At some point, the feeling of an ever-crumbling foundation has to stop. It’s nice to have other, less pressing matters to worry about. And it’s nice to see my friends rally around me for things that at our age, we should be worried and excited about.

I do worry, though, that this burst of “health” is going to be short-lived. But I learned very early on in this journey that worrying and being afraid all the time doesn’t solve anything, in fact, it often times makes things worse.

So I’m going to face today for what today has to offer, nothing more, nothing less. And I’m going to keep this positive attitude for as long as I can.

(Now there’s something to be thankful for! And since I probably won’t get a chance to post again, Happy Thanksgiving!)

It's A Numbers Game

I had anticipated today’s rheumatologist appointment would be a useful one. And alas, it wasn’t.

After taking me almost an hour late – and the nurse asking me if I was okay (?) – Doctor C’s sage advice was, “Have you considered taking a break from school?” Oh yes, because it’s really that simple.

But since my “levels” are all much improved, no major change in my medication. And Doctor C can’t tell me why I’m still in pain. Doctor C is confident, though, that the pain I’m in isn’t indicative of potential joint damage.

Basically, I left my appointment feeling pissed, frustrated, and angry. Why does everything have to be so complicated?

Doctor C has cut me loose for six months. And I’ve made the decision that at my next appointment, I’m going to ask to be taken off all the medication. I’m done with this back and forth, up and down, changing doses when none of it did a damn thing anyway.

You know, as much as I think Doctor C is doing a good job, this approach just isn’t working for me. It frustrates me that the only solutions Doctor C can come up with are impossible and impractical ones. And I continue to guard my emotions, to attempt to appear invulnerable and in control.

Hence, the problem in our relationship, as it has always been, is a profound failure to communicate. Because Doctor C speaks in a foreign language and I don’t speak at all. But how to convey the frustration, the difficulties that I face and feel in an unemotional way?

I couldn’t bring myself to ask the question that I really want an answer to – Is this as good as it gets? Is the way I feel at this moment the best I can hope for? It’s a set of questions that I’m obviously not ready to hear the answer to. On the other hand, maybe I already have.

Just as it appears that my healthy and sick lives are not synonymous, neither is my personality and Doctor C’s.

There are so many times when I’m tempted to say something like, “I know sometimes my social skills are found wanting, but that’s because I don’t feel good. What’s your excuse?”

The truth is, I had written Doctor C off a long time ago. And I’m not sure where I stand at the moment. Because the reality is that while Doctor C was doing the best job that could be done, I was the one who was unrealistic about things. It’s crazy to think that you can be healthy one minute and then the next you are never able to feel that way again. Maybe the real truth, though, is that both Doctor C and I had unrealistic expectations.

I guess I shouldn’t be all that surprised that in the end, all it comes down to is the numbers. But I guess my main fight this whole time was to be more than just a number, more than my illnesses, and more than just a patient.

So here’s a number for you. Zero. Zip. Zilch. None. I’m done!

(And I know that one day, even some day very soon, I will look back on this post and be shocked by my own flare for the dramatic. But at the moment, I’m feeling pretty steamed…)

Left Of Center

“[…] I can’t stand to fly

I’m not that naive

I’m just out to find

The better part of me […]

[…] Even heroes have the right to bleed

I may be disturbed...but won’t you concede

Even heroes have the right to dream

It’s not easy to be me”

- “Superman,” Five For Fighting

***

“[…] I don’t know why I was so ashamed

Such a waste of time

And I don’t know who I was trying to be

All those lies […]

Oh and there’s always something

Or somebody right behind

Well we’re not meant to be everything

We’re just a piece […]

Oh I don’t know why I was so afraid all the time […]
I used to carry the weight of the world

And now all I wanna do is spread my wings and fly”

- “Weight of the World,” Chantal Kreviazuk

My life feels off kilter and unbalanced and I’m not sure what to do about it…

I’ve realized that having attempted (and sometimes succeeded) at superhuman feats in my not-so-long-ago past life, I’ve set the bar incredibly high for which to judge myself and for others to judge me.

And now, when I’m no longer physically capable of such acts, it’s no wonder that people can’t possibly begin to understand why (not). In some ways, I feel like I set myself up for (inevitable) failure, whether caused by myself directly or by forces out of my control.

As a senior in college, I wrote a 125+ page honors thesis. And it never occurred to anyone to tell me what a terrible idea that was. And now it haunts me that the person who wrote that, whose blood, sweat, and tears created it, no longer exists – I can no longer afford to be the person I once was.

And it’s ironic (I think) that so many of us “Type A-ers” are the ones that get autoimmune diseases. Because when we are no longer able to compete at our previous levels, all there is, is disappointment.

And we are, in effect, asked to make a lifestyle change. For me, though, that doesn’t mean changing something small. It means changing who I am as a person. It means taking my expectations of myself (and by extension, everyone else’s), packing them up, and burying them. And maybe the truth is that those “profound” lifestyle changes were changes I should have made a long time ago.

This line of thinking is related to the recent backlash I have received from people. Another possibility for this treatment is that while they would never admit it, the people who have been less than helpful know they wouldn’t be as strong as I am. I don’t say that in an “I’m so great” sort of way. What I mean is that they are afraid of how they would react, being in my position. On the other hand, maybe they’ve dealt with things in their lives where they received little support and are angry and take it out on those most vulnerable because they can.

And I hope that if that’s the case, regardless of what my experiences have been, that I will never do that to others. That I won’t become so bitter and resentful that I refuse to give others a break because I didn’t get one.

But the truth is, I think it’s admirable to admit when a specific part of your life infringes on all other aspects of it and you don’t pretend like things are fine when they aren’t. And I realize now that, that is what the problem is. I’m doing fine in my program, I’m pretty much on schedule. If I were flunking out, maybe then people would pay attention.

I’ve never been one of the “popular” kids. Throughout life, I have had various personal appearance (frizzy hair, glasses, braces on my teeth for far too long, etc.) and personality (smart, etc.) issues that warranted “dork” status.

When I got to grad school, though, in some ways, I felt like I had left that complex behind. Even though there were many times in that first year when I questioned my own abilities, by virtue of having been accepted into such a highly ranked grad program in my field of study, I was suddenly thrust into the spotlight. At every turn, professors who had read or heard about my thesis would go on and on about me.

And then I got sick and my tenure as a member of the “in crowd” receded once again, relegating me even farther down the food chain than I was before – from “dork” to pariah.

And that’s where I remain.

(And I don’t mean that to garner sympathy. I say that because I have a feeling that some of you out there will know exactly what I’m talking about.)

I’ve had so many thoughts and feelings swimming through my head lately.

It’s not as simple as burning pictures and banishing memories from my head. It’s about admitting to myself and others that the person I was before can no longer be. And it’s about learning to not be ashamed of that. And about learning to ask for help, even when I don’t want to.

When I was doing all my reading of books about lupus, rheumatoid arthritis, and prednisone, about how to dance with the devil and still make it out of hell, I wasn’t grieving. I was still trying to be an “outsider,” viewing my life from someone else’s perspective and not my own.

And I struggle with the fact that I have an appointment with Doctor C on Wednesday, and while I’ve thought of every possible way to get out of it, it seems that hiding or attempting to run from my problems is the unhealthiest way to deal with things.

The whole concept of “premature aging” pretty much sucks, but learning to accept your own fallibility, is unfortunately, a valuable lesson to learn. And I’m not sure that there are ever enough tears that can be shed or that we can ever truly accept the fact that we are only human.

And yet again, disclosure is a complicated thing. It’s hard to decide how open to be about such things. But what really frustrates me are the people who have no right to think they know what my life is like, and yet they compare themselves.

There are, however, friends I’ve made from the chronic illness virtual community who sometimes shock me because they get me so well. Even though we don’t communicate face-to-face, they can sometimes fill my wordless void and come up with the right words for me. And then there are people in-person whose unsympathetic, unsupportive words hit me like a ton of bricks. Shouldn’t the roles be reversed? How can someone that I’ve never met before get me so well, and someone I see on a weekly basis not know me at all?

Then there are those, who, in their own quiet way, are watching, and listening, and appreciating the effort that it takes just to get through the day. But inevitably, they are the ones who are all too familiar with the “identity shift” that takes place when you go from “healthy” to sick.

So, I guess what I’m trying to say in my own convoluted and verbose way is that I’m deeply confused. I’ve realized that I have to let go of my “pre-illness” self and learn to adapt to life as a new person and I have to learn which battles are worth fighting and which are not.

Fighting for control in a situation that you don’t have control over is like fighting for air with a plastic bag over your head. And the truth is, I haven’t exactly taken the bull by the horns with the little part that I do have control over. I’m just not that good at the self-care part.

That was then, this is now…

Heal thyself.

Life and let live.

(I’m not even sure how much sense this post makes because it has been written in fragments over the past week or so, but I figured it was long overdue, so I posted it anyway…)

Virtual Book Tour: "Women, Work, And Autoimmune Disease: Keep Working Girlfriend"

Today, I am honored to be interviewing Rosalind Joffe about her book, coauthored with Joan Friedlander, “Women, Work, and Autoimmune Disease: Keep Working Girlfriend” for her virtual book tour. Rosalind was one of the first people I connected with online when I started researching autoimmune diseases and was trying to find the support of others like me (chronically ill). She interviewed me for her blog Working With Chronic Illness very early in my blog “career,” so I feel like I have come full circle having the opportunity to interview Rosalind today for my blog.

Leslie Rott: First of all, Rosalind, could you provide my readers with a little bit of background about yourself and your book?

Rosalind Joffe: I’ve lived with chronic illnesses for 30 years – multiple sclerosis, ulcerative colitis (5 years and then ‘cured’ with ileostomy), and others. My husband and I have two grown daughters and I’ve worked since college (35 years) except for two years, when I was on SSDI. When I returned to working after disability, I decided I had to figure out work that I could continue to do with my unpredictable health issues. And it had to be something I cared deeply about, enough so to get me out of bed even on the worst days and would be worth devoting my limited resources. And I have done that -- coaching people with chronic illness in keeping their careers going. This experience inspired the book. Realizing how difficult it is for anyone, but women in particular, to live with chronic illness and stay successful in the workforce.

LR: What is a virtual book tour? How does it work and why did you decide to have one for your book?

RJ: A virtual book tour is an online journey that takes readers to different bloggers who post something about your book. These days, non-fiction books don’t typically sell well in brick and mortar bookstores. But the Internet, with its ability to hone in on a special interest, gives niche books an opportunity to find their audience. I know that the disease community is a vibrant blogging force and believe that this is a terrific way to get my message out there while also creating stronger links among the bloggers.

LR: Why did you choose to focus your book on working women specifically?

RJ: From working with such a wide variety of people with chronic illness, it’s easy to see that there are so many issues that need to be addressed regarding work and chronic illness. We chose this focus for three reasons: both Joan and I had personal experience with autoimmune disease and working, four times as many women than men have autoimmune disease, and these diseases tend to get worse during those years when most people are at the intersection of career and family building.

LR: How do you, as a woman with chronic illness, manage to balance all of the commitments in your own life?

RJ: Well, it depends on what you mean by balance. We’re always “balancing” commitments, but that is different from being “in balance”. In the last chapter of the book, I describe hope and resilience and I think those two qualities are what sustain me. The sense that however bad this moment is, tomorrow could be different and better, is hope. And the ability to bounce back to a standing position, even after you’ve been hit with a resounding punch, is resilience. I’ve worked all of my adult life on nurturing these two qualities.

LR: One thing that I have found so interesting during my time as a chronic illness blogger is the universality of the stories and experiences shared by members of the chronic illness community, regardless of disease. Just as an example, even though I am not a working woman, your book resonated with me on many levels (see my review of "Women, Work, and Autoimmune Disease: Keep Working Girlfriend"). Why do you think this is and do you view this as an integral part of what keeps the chronic illness community going? :

RJ: I’m delighted to hear you say that because from the outset, when I developed cicoach.com, I decided that I wanted to work with anyone who lives with any chronic illness or condition, not just people with multiple sclerosis or ulcerative colitis (diseases I have). We focused the book on AD because of the prevalence among women, but we tried to emphasize that although course and symptoms among chronic diseases might vary, the issues that they create in our lives are the same.

And I think that’s critical for people to realize. It gives all of us living with chronic disease a common voice rather than struggling to see how one disease differs from another. The more we can see the common themes, the better able we are to address and get what we all need – from healthcare, the workplace and society at large.

And now, I’ll step down off my soapbox!

LR: In your book, you provide a lot of advice for working women, women who are knee-deep in their careers when chronic illness steps in. What advice would you give to women in their 20s and 30s who are coping with chronic illness and are trying to balance other life issues as opposed to working (for instance, being in graduate school, like me)?

RJ: I’ve found that it’s helpful to realize that we are who we are wherever we are. It doesn’t matter whether you’re a student, a parent, or a working person. The issues are the same. You’ve got competing demands on your energy and time. You’ve got other people’s expectations for what you can and can’t do. Finally, you’ve got your own interests, needs and expectations. You can’t possibly meet them all – even healthy people don’t. You’re just likely to meet fewer than other people. But if you normalize the challenge by recognizing that everyone makes compromises, faces disappointing themselves and others, and has to realign what is possible, you can put things into perspective. We waste a lot of time being unhappy over what isn’t. Better to focus on what is.

LR: In your book, you talk about women with chronic illnesses as being part of a “sisterhood”. Aside from blogging and sharing our stories with others, how else can we keep the “sisterhood” going and participate in advocacy and awareness regarding chronic illness without wearing ourselves out in the process?

RJ: That’s a tough one for me to answer because blogging and sharing stories is what I do (in addition to working with my clients, coaching them). Although we wrote the book for women, I’ve always wanted to and tried to include men in this discussion as well because I’ve seen that chronic illness is just as hard on men as it is on women and in many of the same ways. We all benefit from knowing we’re not alone.

LR: Is there anything else you would like my readers to know?

RJ: Since I have a hunch that most of your readers are more like you (a student) than not, I encourage them to consider the long term when making decisions – whether it’s about school, work or personal. Living with chronic illness can mean that you live with more limitations than you’d like. So you have to be more strategic and maybe even a little less spontaneous. But if you’re lucky, life is long and if you’re patient, you have time to achieve most of what you seek. It might not be in the time frame you want or even the package you expect. But when you maintain hope and resilience, you’re more likely to recognize that dream when it becomes your reality.

LR: I think that many of us hope to live up to the challenge that you pose, to fulfill ones passions, while still being able to balance all of life’s craziness in addition to chronic illness.

Thank you, Rosalind, for allowing Getting Closer to Myself to be one of the stops on your virtual book tour! My readers and I greatly appreciate all of your efforts and the advice and wisdom that you offer, both in the interview today, and in your book, “Women, Work, and Autoimmune Disease: Keep Working Girlfriend”!

Please make sure to check Rosalind’s site and view all of the other blogs that have taken part in the virtual book tour thus far, and who are yet to come next week.

The Lemonade Award

While I hadn’t planned on posting again this week until Rosalind Joffe’s Virtual Book Tour for “Women, Work, and Autoimmune Disease: Keep Working Girlfriend” stops by Getting Closer to Myself (GCTM) on Friday, Maureen Hayes from Being Chronically Ill Is A Pill has graciously awarded GCTM yet again, this time with the Lemonade Award.

According to Maureen’s blog, “This award is given to blogs demonstrating a [n] attitude of gratitude.”

While I’m very appreciative of this award, I’m going to monkey with tradition a bit here and provide ten things that I’m thankful for, instead of awarding this to ten other blogs. The reason for this is because several of the blogs Maureen awarded along with GCTM, I would have awarded also (it’s not that there aren’t others that deserve it, or that I don’t read that many blogs! – truthfully, I’m pretty strapped for time at the moment), and because it’s almost Thanksgiving (and what better time to think of things to be thankful for?):

1. My family and friends
2. Days when my pain doesn’t get the best of me
3. People who read my blog other than me
4. Lately, coffee/caffeine
5. The passion I have for my research, which is really the only thing keeping me in grad school these days
6. Random “adventures” with friends that still allow for a little spontaneity in my life
7. Doctor’s appointments schedule at the perfect time, right when I’m at my breaking point
8. A good book (suggestions welcome – I’ve been a little sparse on the “pleasure” reading lately)
9. People that appreciate me for who I am
10. Knowing that there are other people out there like me, even if they aren’t in the same state

I guess that about sums things up right now! I hope it’s okay, Maureen, that I monkey-ed with tradition a bit, and I hope this post is still in keeping with the spirit of the award.

Also, make sure you stop by my other (new-ish) blog, Chronic Illness Creative Energy Project (CICEP) and check out the new things I’ve posted there!

"My Life As I Know It ... Right Now (An Unconventional Poem)"

I am burning through my SPF 50 sunscreen
I think I am allergic to the rain
I take 11 pills a day... Count them... 11
My hair is falling out...
I thought this, but my sister assured me when we were at the hairdresser getting hair cuts and she told me that my hair was clogging up the drain
I don’t have much of an appetite
The fluorescent lights in my office give me a headache
My head is foggy and I can’t concentrate on anything but trying to compose a thought
I’m so nauseous and dizzy, I get stopped in my tracks... I can’t distinguish the ceiling from the floor
My body seems to know only two temperatures – Too cold and too hot
I am still sporting a bruise from blood I had drawn nearly three weeks
My patience is wearing thin
I hate looking in the mirror
I am sick of bumps in the road
I am tired of being tired all the time
I wish I felt my age instead of feeling like I’m 80 when I’m only 22
But of course, things could always be worse...
So they tell me, and I try to believe...

This is the poem that I submitted for the “Creative Corner” of “Lupus Now”. I highly recommend checking out the other stories and poems that are posted there.

"Seeing Is Believing"

You look at me
And think that looking also means
Knowing who I am
But underneath the polished veneer
That you take to mean an easy life
My life is far from easy
Some people would even call it hard, difficult
Some might even say it sucks
So I can no longer linger on what you may think
Of me
Or not think of me, for that matter
Because I am
A multitude of things
And whether or not you choose see it
I am me

I had jaded myself into thinking that I would make this poem longer. But to no avail, I finally decided to post it. This poem explores issues of judgment and invisibility, and while it does not explicitly talk about illness, it is in reference to such illness-related issues.

Making The Choice And Facing The Consequences

One of the many choices we face, as chronically ill people, is whether we should or want to be labeled as such. I, personally, have had several experiences with this.

The first is, as I have mentioned several times before, that Doctor C was at first hesitant to provide me with a diagnosis because of not wanting to “label” me.

More recently, however, more labels have been tied to my person. I have joined the ranks of students with “disabilities.” Doctor C had to fill out the “chronic health conditions” verification form, which was submitted to the office that advocates for students with “disabilities.”

Don’t get me wrong here. I’m certainly appreciative of the help and support that I have received from these organizations. However, an issue that we talk about often – disclosure – really takes center stage here. Not only do I become a person with lupus and rheumatoid arthritis, I also become seen as being chronically ill and disabled.

Obviously, since I blog about my illnesses, I have accepted the label of being chronically ill. However, accepting these labels in the “institutional” setting makes them even more real than they were before.

And there are, of course, pros and cons to being seen this way. So maybe for those who wonder why I waited so long to ask for help (nearly a year and a half of being sick and six months after my diagnosis), can understand that being “out” about such issues is both a blessing and a curse.

When disclosing goes well, or you share in a “safe space” with like others, which rarely happens, it can feel like a weight has been lifted off of your shoulders. I, for one, struggle on a daily basis with the fact that so few of the people I am around most of the time have no idea what’s going on. It makes me feel like a fraud. It makes me feel like I really do have something to be ashamed of, that I actively have to hide and conceal my illnesses for fear of being exposed as what I truly am – sick – and all of the questions about my ability that comes with it.

And part of this feeling is based on the fact that my department has not been entirely (if at all) supportive of what has been going on. One of many questions I ask myself lately is - do I want to continue in a department that does not support my needs? Do I want to stay in graduate school?

I had another meeting this week, with a different person from a different office. The meeting, itself, went well, but I am not really sure what the status is of things at the moment.

And as I spent that meeting telling my story and contemplating my need for voice recognition software and a backpack on wheels, I realize that there are choices that have to be made. And they are no different than the ones I make on a daily basis.

Early on in this experience, I was playing the role of a rebellious teenager, thinking about the allure of defying medical authority by not taking my medication. There was no rationale behind this thought other than to “stick it” to someone. Now, however, there is the question of whether I am better off taking the medication or not. And while the answer seems like a simple one, it isn’t.

Next week, I have an appointment with Doctor C, and it is clear to me that some changes need to be made. But I also know, even before having the options in front of me, that the choice will not be an easy one, because there is always something to be gained and something to be lost in this process. For instance, given the choice of prednisone or not, would I go for the prednisone again?

These are tough questions. But there always have been and always will be tough questions. I think sometimes my friends get frustrated with my indecisiveness about little things, like where to study or where to eat, etc. But the truth is, it’s only because I have to face the tough questions and make decisions, that when it comes to the little ones, it honestly doesn’t matter all that much whether we go here as opposed to there.

You know, having to have answers to the tough questions, sometimes on the fly, is both physically and emotionally draining. And lately, I have not been good at deciding when to take a break. Last week was crazy busy – I can’t believe that my last post was nearly a week ago – but on the other hand, I’m not all that surprised.

On Saturday, it wasn’t until my cell phone started vibrating in the other room that I got out of bed. And on Sunday, it wasn’t until the obnoxiously loud bells from the church down the street ushered me out of bed. For once, isolation was nice. The people that needed me or wanted to see me or talk, called or e-mailed me. I wasn’t rushing out to go anywhere, mainly because I didn’t have the energy to do so.

And Saturday was one of the most productive days I’ve had in a long time. But no matter how relaxed or “normal” things can seem, there are always reminders. I met some friends for brunch yesterday morning to celebrate one of the friends birthday’s. It was a pretty long walk and really cold out. By the time I got home, I was exhausted. So I fell asleep on the couch at about three in the afternoon. And while you might want to say, “But Leslie, there are people in the world who nap who don’t have chronic illnesses,” that’s true. But this is all relative. And I never was much of a napper before the chronic illness stage of my life.

There are many mornings where I stare at the prescription bottles lined up on the counter and think about how much easier life would be without them. On the other hand, I know if I take the cellcept more than three hours later than my usual time, I will end up with one of the worst headaches imaginable. The back of my head will pound and it will feel like my brain is going to explode.

So there are many choices that have to me made. And some are easier than others. Do I disclose and risk losing everything or do I stay silent and risk losing everything? Do I take my medication or do I tempt fate? Do I go to a get-together or do I stay in bed? Do I put on a brave face for nearly everyone in my life, when really, I’m in pain?

Yes, there are always tough questions. But it’s about opportunity cost, about calculating the risk and the reward. But sometimes, we don’t have the time or energy to consider the opportunity cost. And sometimes we don’t have the energy to think that hard and over-analyze everything (as some of us are wont to do).

Seeds of Change, Roots of Hope

I have attempted to keep my blog as apolitical as possible, but in light of yesterday’s election, I felt like I wanted to say something about the power that we have as bloggers.

For the first time in a long time, I am hopeful about the future. And given the physical and emotional ups and downs of the last year and a half, that is saying an awful lot!

And I’ve been trying to figure out why my generation (20-somethings) is so affected by the current political climate. And then I think about what my parents and grandparents have lived through – they have seen and been at the forefront of many important changes that this country has seen over the past half-century.

But I can’t say the same for myself. Sure, I was 16 when September 11th occurred and that profoundly affected my views on the world. But in a world where strife and hardship are a daily occurrence, I don’t feel like there has been any movement away from that.

And Barak Obama highlighted this historical trajectory in his victory speech (which you can read via NPR) early this morning – “A man touched down on the moon, a wall came down in Berlin, a world was connected by our own science and imagination” – and it is this technological revolution, which has probably been the greatest change of my generation, which helped Barak Obama win the election (see BBC story about Internet strategy and the primaries). And it is that same technology that helps us advocate for people who are chronically ill everyday.

No matter what minority group you are a member of, even those that have yet to be spoken for, it is us, the everyday people, that have the ability to make change happen in America.

In a world where we daily fight for a shred of recognition, where some of us live in constant pain, without health insurance, people that don’t always understand us, doctors that speak another language, cures that don’t come fast enough or that are worse than the diseases themselves, by telling our stories and supporting each other, we set the stage so that change truly can occur.

I was thinking back to my parents growing up during the 1960s and the influences of that time that they have injected into my family. And the first thing I thought of was folk music. I think of songs, like “The Times They Are A Changin’” by Bob Dylan, which 35 years after it was originally written, holds as much meaning and promise as it did then:

For the loser now

Will be later to win

For the times they are a-changin’.

If you don’t know all of the words of the song, I strongly suggest you read them here.

And so it is not only the outcome of yesterday’s election that gives me hope. Everyday I have hope because of all of the people that I have been able to meet in the chronic illness community; people who support each other and who give each other hope that tomorrow can be better than today.

So no matter what your political affiliation is, we all have the power to create change.

This Is Hilarious… And So Not True!!!

But it certainly put a smile on my face (and made me have delusions of grandeur about how much sway I have in the world)!

Where do people come up with this stuff?

* Please note that there is language in the above link that is not suitable for children. Please make sure that there are no children in the room when you click on the link. (I’m just trying to be a responsible citizen!)

Showing Up

Friday night I sat down to write a “poor me” post. I was alone in my apartment trying to recover from an exhausting week. But I didn’t end up finishing that post (as is evidenced by my lack of posting in recent days). Because the truth is, there were more ups than downs this week. And for once in a long time, the odds may finally be stacked in my favor.

As I’ve been writing about a lot lately, I’ve been having problems with getting my department on board about my illnesses and all that goes along with them. I had finally gotten a meeting with someone at the level of the graduate school. However, in talking with someone who has sort of been along with me during this entire process (even last year), I caught a break. The person I was talking to was very frustrated that I had been jumping through all these hoops without any help and offered to make a call to “a friend in a high place” on my behalf.

A half-hour later, I was in a meeting with that person, explaining the entire situation. And guess what? In two days time, more was accomplished than had been in the previous six months. This person called dozens of people for me, directed me to what forms had to be filled out by Doctor C, and was coordinating all of it. And Doctor C turned the form around in not even 24 hours worth of time.

Apparently, I’ve been talking to the wrong people all along, because I shouldn’t have been the one having to do the coordinating. But what is most interesting about this situation (other than the fact that it’s not what you know, but who you know) is that I was commended for taking the initiative to get “all my ducks in a row” before there was some emergency where they needed to be. While that was my whole point all along, I didn’t really see any positives where my abject failure is concerned.

However, in a roundabout way (about as roundabout as all of this coming together so quickly and seamlessly – finally!), this leads me back to an earlier lesson from this semester…

In my academic publishing class, my professor has stressed to us the importance of “showing up” for our daily scheduled writing times. In the beginning of the semester I rebelled against this notion. With a medication schedule and a newfound curfew/bedtime, I resisted any other attempts to further routinize my life.

But I’ve been doing some soul-searching these last few days, and I have realized that despite all evidence to the contrary, showing up really is key and I have a profoundly stupid ability to do so.
As I’ve tried to explain to several people, sometimes just my being able to be present in class, to drag myself to campus, to show up – is a big thing. And as I talk to others who skip class for no good reason, I realize that while others have to give me a break, I have to give myself a break, too (a shocking realization, I know).

But… [sigh] old habits die hard. And Thursday was a perfect example. Whether it’s the extra sleep I’ve been forcing myself to get over the last month and a half as per Doctor C or my newfound coffee habit (bad, bad, bad – I know), I do find myself with more energy than before. To me, though, extra energy still means exploit it, not conserve it. So I put in a 17-hour day. And it wasn’t until I hit my bed that I realized how exhausted and in pain I was. And I definitely paid for it all weekend.

Now the whole point of that is to say that now that my department is on board, I have to be more willing to ask for help and concessions when I need them. I didn’t just spend that last six months, and the last month in particular, trying to work these things out for nothing. And I should be more willing to take a day off when I need one. Everyone else does, so why shouldn’t I? After all, my whole purpose in this situation was to forcibly end my (and everyone else’s) denial that my life hasn’t changed since I’ve gotten sick. Because of course it has.

And now that things with my department are no longer on the fritz and I have people on my side, working to make sure that there are contingency plans in place, should I ever need them, I feel much more relaxed about things.

Of course, there are still hurdles to be jumped – personally, professionally, and medically – but for that matter, there will always be hurdles. At least for today, though, the hurdles are more my size. And even if I stumble along the way, at least I had the tenacity to show up in the first place.

* P.S. – Check out the first stop on the Women, Work, and Autoimmune Disease: Keep Working Girlfriend” virtual tour over at Rhymes With Migraine. The theme of that post goes really well with my post for today.

(I've Received the) Kreativ Blogger Award

It’s nice when you are questioning yourself to receive a pat on the back without having to ask for it! And Maureen from Being Chronically Ill Is A Pill has done just that for me – and I really appreciate it – especially since it has been a difficult and crazy couple of weeks for me! She’s made me one of her picks for the Kreativ Blogger Award. Maureen is a newer reader of my blog, who I don’t know that well yet, but her comments have been extremely helpful and supportive – and it’s nice to know that I’m not the only one reading my blog!

My instructions are to list six things that make me happy and then give the award to six other bloggers.

Six things that make me happy:

1. My family and friends (both “real” and virtual)
2. Kind-hearted people, in general
3. Writing that helps others
4. Warm weather, heat, a warm blanket, etc.
5. My new rain boots (picture forthcoming when I get around to buying batteries for my camera)
6. Animal crackers

Six bloggers I want to give the Kreativ Blogger Award to:

1. Maria, from My Life Works Today
2. MJ, from Rhymes With Migraine
3. Migraine Chick, from Migraine Chick
4. Sasha, from Type A With RA
5. Chronic Chick, from Chronic Chick Talk
6. Britta, from Chronically Young

Thanks again Maureen!

Quick Bits

Hopefully I’ll be coming at you with a new post soon, but for now, check out the following:

The Partnership to Fight Chronic Diseases - http://vote.fightchronicdisease.org/

Saw their TV spot this morning, so check that out and more!

The American College of Rheumatology had their annual meeting this week and if you check out http://healthday.com/ and search for "rheumatoid arthritis," there is tons of new information on treatments and other disease related issues. This information is applicable to people with lupus, too, and may help others, as well, who have various kinds of rheumatologic diseases.

“Illness As Metaphor” For Life

“Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place” (3).

- Susan Sontag, Illness As Metaphor

*****

I’ve been a pretty terrible blogger these past few weeks, but between schoolwork, teaching, and the weather, my time and energy has really been spent. So it’s time for a catch up… (and I’ll attempt to be coherent here, but I have a lot to say)

*****

The thing I have been struggling with a lot lately is the disjuncture between fantasy and reality. There is the fantasy of what I would like to do or try to convince myself that I can do, and there is the reality of what I can do because of my illnesses.

Part of the problem, I realize, is that there is so much about ones person tied up in illness. I must not be as morally upright since I wasn’t able to resist the temptation of illness. Oh yes, because feeling crappy 99 percent of the time is such a desirable state of being… That somehow it’s my fault… As Talcott Parsons (a sociologist – no big surprise there) said of the “sick role,” people become sick so they have an excuse to be lazy and avoid their social responsibilities. So with that rhetoric in mind, I attempt to face the world in as true a fashion as I can muster…

The truth is, I’ve finally come to the realization that while I would like to deny the reality of my illnesses, I can no longer afford to do so. And this means, unfortunately, more disclosing (and even more unfortunately, uncomfortable conversations) than I would like to be doing (and having) at this point in time.

In an attempt to reach out to my department and attempt to find a balance, I’m left feeling even more than before that I don’t belong in grad school and that my work life and my personal life cannot possibly coexist in an academic environment. And that’s sad because for the first time all year, I’m starting to realize that my research does have something to offer to the world.

But in a conversation with someone I trusted that was supposed to be helpful, I was offered unwanted and unasked for advice and the suggestion that maybe my career will be helped by the fact that I’m sick – a sick sociologist who can empathize – is exactly what the field needs. Great! Where do I sign up for that?

I apologize (only partly) for the sarcasm, but that is the stage I’m at right now. Part of the reason I haven’t written in awhile is because I was so hurt, confused, and taken aback by the conversation that I had to distance myself a little. But with the help and support of some virtual and in-person friends, I realized that I had every right to be upset. And of course, I’m still trying to work through this specific situation, but I’m moving forward in terms of looking out for myself.

*****

Partly I feel so bad about all of this because I care too much about what other people think. And while I know that I shouldn’t, I do. It’s so frustrating because I’m asking for help and concessions out of necessity, not out of want. I wish I didn’t have to be having these conversations at all, but not having such conversations does no one, least of all me, any good at all. And yet, no one is making it easy for me to have these conversations.

And the truth is, I can see how stress exacerbates these illnesses. Last week was a crazy, non-stop week. One night, I got home knowing that I had all this stuff to do and then I couldn’t remember any of it. Literally, my mind was a total blank. I called my sister and she asked me what I was doing. My response was something like I’m sitting here trying to remember what I’m supposed to be doing.

I put in a 15-hour day last week and realized that I would be paying for it for several days afterward. A fine display from the old me, but not the smartest move for the new (and improved?) me. At some point, I am going to have to let myself off the hook for the things that are no longer realistic aspects of my life. At the same time, however, someone in my department is going to have to tell me that it’s “okay” and that I shouldn’t feel bad.

But it’s so easy to get caught up in the jumble of papers, proposal writing, teaching, grading, and all of the other responsibilities that come with being a grad student. And it’s hard for me to admit to myself that I have limits - and not superhuman ones, either - but real limits that I need to consider and pay attention to.

*****

I’ve had these dreams, nightmares really. I’ve mentioned before the dreams of all my teeth and hair falling out. But it wasn’t until the recent dreams I’ve had about helicopters literally falling out of the sky and crashing down in front of me that I realized that those dreams aren’t foreshadowing real events. But it’s what the dreams represent that is real. I’m living my life waiting for the next bad thing to happen. And I know that sounds awful and depressing coming from a 23-year-old, but the truth is, I feel like that’s all I know lately. While that thinking may protect you from the bad stuff, though, it also closes you off from allowing good things to happen, too.

I don’t really know how I feel about anything anymore.

It’s like the last time I went to the rheumatologist, Doctor C asked me if I had a list of questions (as I usually do). And I didn’t have any. It’s because the questions I want answers to, nobody, not even Doctor C, is capable of answering. Truth be told, there is still that lingering question that starts with a w and has an h in the middle and a y at the end. And it’s not the medical answers that I want. It’s not that I want to know how my body got so screwed up. It’s that I want to know how my life got to a place where good and bad swirl together to make gray. And the whole world appears cloudy. And daily I ask myself what I’m doing with my life.

It’s difficult to imagine that these are truly the best years of my life.

I’m truly feeling confused at the moment. And talk about confusing, I ran into Doctor C the other day outside of the hospital environment. And it was weird. Doctor C actually stopped, though, and asked me how things were going. I think that had this happened a few months ago, Doctor C probably would have ignored me. And as much as I think it’s a credit to the fact that our relationship is much better than it was before, it’s strange when various lives and identities (literally) collide head on. I’m still not sure that I’ve fully “recovered” from this bizarre occurrence…

*****

In some ways, I’m lucky that all of this illness stuff happened in the context of grad school. I was thinking about how it would have pretty much derailed my life in nearly any other situation (i.e. a year off, a job, or Teach for America).

But the truth is, we never really go into any situation tabula rasa (with a clean slate). And it was naïve of me to think that grad school would mark a completely new beginning. Because the more I think about it, the more I realize that grad school is just a continuation of my previous life as a student. But unfortunately, I can’t be that student anymore. And I find myself daily doing battle with two conflicting identities – the person/student I was then – and the person/student I am today.

*****

So after all that, why “illness as metaphor”, you ask? Because illness forces us in a very strange and roundabout way to face the big questions whether we are ready to or not. And it’s sad that it takes such a mind-bending event to make us reevaluate our priorities or who we are as people.

The other thing I will say about Sontag is that she talks about how cancer becomes this term used, not only for illness, but also for the people and things that are viewed as negative by society. And in some ways, I think this bizarre class known as autoimmune diseases has taken cancer’s place as the unspoken and unseen foe that has the potential to fester until the only result is to destroy everything it comes in contact with.

*****

(Sontag, Susan. Illness As Metaphor. New York: Picador, 2001)

Check Out My New Project...

Well, I have been a terrible blogger lately. It has been like what, two posts in the last two weeks? Anyway, I hope to get some kind of update written over the weekend and up early next week. I have been really busy with grad school stuff lately (and trying to keep within my bed time!)...

In the meantime, I wanted to let you all know that I have been devising a new project for myself, and I am hoping that some of you will be willing to help me out with it. I have created a blog, the Chronic Illness Creative Energy Project:

http://chronicillnesscreativeenergyproject.blogspot.com/

I hope that this can be a collaborative effort of sorts. I have noticed that most chronically ill bloggers have multiple talents and a lot of different, creative, and unique things that they put their energy into. So I wanted to create a place where we could all come together and share with each other some of the things that we do with the energy we have, and all of the various ways aside from blogging, that we create meaning out of our illnesses.

Let me know your thoughts!

"Is It All In My Head?"

I created the above collage entitled, "Is It All In My Head," in my *spare* time and if nothing else, it was very cathartic to cut magazines to shreds and make a futile attempt at using scissors.

My Letter To My “Younger” Self

I was inspired to write this after reading “What I Know Now: Letters to My Younger Self”. This letter isn’t written to myself at any particular time in my life, since I would still like to consider myself young, despite how my body makes me feel on most days. It is written to my healthy self, however. Honestly, this letter feels oddly personal and raw to me in a way that very little else has.

*****

Dear Les,

You know all those times you’d watch TV and worry that maybe you had the same disease as that person on “ER.” Guess what? You didn’t. And you probably never will. And the time that you and everyone else puts off your feeling lousy as stress is the time you really will get kicked in the ass by illness. And it’s going to suck really bad a lot of time. But you’ll get through it. You always do. And you are going to get incredibly ticked off when prime time hospital dramas turn into reality TV for you.

In my eyes, I see the long red hair that you only ever cut out of necessity. You’re a unique mix of Anne of Green Gables and Sandra Bullock’s character in “Miss Congeniality” – stubborn, tempered, smart, emotional, and well, admit it, you’re a pretty big klutz. But when you do things, you do them with your whole heart and that’s an important trait to have.

Not taking risks doesn’t preserve you from danger. It only makes it worse when you are finally felled by some invisible foe that you never imagined.

I think back to that time, I think you were around five then. And you took the train to Toronto and you chronicled the journey on a Sony tape recorder. Even then everyone knew you were going to go places…

One question I keep forcing myself to ask is - would I have been any more prepared for this at another age? And the answer is a resounding no. I think that maybe if I were older and more settled in my life, things might have been easier in some ways, but harder in others. The truth is it would have rocked my foundation no matter what. Sometimes, there are things in life that inevitably make us question the validity of everything we thought we knew.

And now, my demons bear down on me and take many forms. They are the result of a squandered youth. You don’t want to be that person who was always too mature for her age and then end up being forced to really grow up in an instant. But no matter how hard you try, that is what is going to happen.

So I know that technically I’m still my “younger” self, but here’s all the advice and words of wisdom I’m capable of giving…

Think about the last time and place you felt safe and really comfortable in your own skin. Go there in your mind.

Don’t think about the person you want to be, become that person.

When you look back, don’t regret the road not taken. Think of all the lessons you learned along the road you did take. Embrace your fears, your insecurities. Use them to your advantage, don’t let others use you.

You know what, little girl? You came of age in a turbulent world. A world full of uncertainty at every turn. Rather than fear it, embrace the unknown and let it carry you.

But in my heart I know that while it may take time, lots of time, you’re going to be okay!

And while your quiet life in quintessential suburbia tried to shelter you, you soon enough met the world with both its wonders and its flaws.

And someday you will stand taller than your 4’11”.

You are stronger and braver than most people give your credit for.

Don’t judge others in ways you, yourself, don’t want to be judged.

Don’t assume things based on people’s appearances. As you know first hand, appearances can be deceiving.

The path you travel will be a rocky one. But although sporadic, there will be people to cheer you on along the way. It’s easier to listen to the dissenters rather than the cheerleaders, but the cheerleaders will make you strong.

And do me a favor, will you? Before you get too busy with others, think about yourself (for a change).

Don’t be afraid to take risks – not stupid risks, but necessary ones.

The things you will regret most will be the things filed under “peer pressure”. When you followed others and did not listen to yourself, those are the times you wish you could take back. Remember that time you hopped on your bike and tried to churn up dust like Jonathon? You got a nice scar on your knee to prove your valor. And that’s the only scar you’ll have from those days. But trust me, kid, there will be more scars in the future, some you will be able to hide, others not, no matter how hard you try.

I honestly can’t believe I’m saying this, but… REBEL. Do it before it’s too late, before the only rebelling you can do will be going against “doctor’s orders”. Before it actually will impact your life and your health. Don’t go crazy, but do go against the grain, stray from the path once in awhile.

Wear Your Flaws Like A Badge Of Honor.

Your Best and Worst Critic,

Leslie

It's The Little Things In Life...

Imagine my surprise when I came up last night to find an envelope from ChronicBabe. Turns out I was one of 20 essay contest winners. It made my day to get the t-shirt and buttons pictured above.

And I figured as an added bonus I would share with you the essay that I submitted:

Why do I love ChronicBabe? That’s an easy question. I love ChronicBabe because I am a chronic babe… and I’m quickly learning to become proud of that distinction. When I received my diagnosis of lupus and rheumatoid arthritis in April, I thought my life was over. But I quickly learned that I am not alone in all of this. ChronicBabe has helped me to realize that and has introduced me to others just like me. This is one of the greatest gifts that I could have ever received. ChronicBabe has taught me that our illnesses should be worn as badges of honor, rather than as patches of shame. And so as ChronicBabe celebrates its 3rd birthday, it also celebrates all of us Chronic babes out there who are learning to cope, to be strong, to be proud, and despite our illnesses, to love ourselves everyday.

“What I Know Now: Letters to My Younger Self”

It hasn’t happened recently that I’ve found a book I wanted to put work aside for to read. But “What I Know Now: Letters to My Younger Self” is a book that I found truly empowering and inspiring. It has “girl power” at its very core. Every page is infused with hope.

The book’s author asked famous women in various sectors of life to compose a letter to their younger self. And what the book’s pages contain are raw and real self-reflections by women who we used to know in name only.

*****

“We don’t always have the wisdom we require at the time we need it” (xii).

Isn’t that the truth? Timing is a funny thing…

“Choosing to grow during trying life passages can be lonely work” (xiv).

I’ve had to learn over the last week or so that I have to measure my life differently than other graduate students. It’s a very hand lesson to learn, especially when I embarked on this academic journey expecting never to fall behind. However, I have to count the things that are important to me – walking down the stairs of my apartment building without feeling too much pain, being able to open a jar or Tupperware on the first try, and not chucking it mercilessly across the room when I can’t open it at all. And the truth is, this is very lonely work. Much of it happens in my head or when I’m alone in my apartment.

“But you need to learn how to celebrate – not just to suffer. It sounds impossible, doesn’t it? How, in the midst of all this turmoil, can you possibly find a way to feel good about what’s happening” (41)?

I found this really inspiring. It doesn’t provide answers to either myself or the person who wrote it, but what it does provide is hope. It provides hope that things will get better and that in some small way, I have the power to make some aspects of my life better.

“It won’t be a ‘happily ever after’ story – the cycles of darkness and light continue. But have patience. Your most important struggles will be hard-fought but won well” (42).

I think being realistic about ones life is incredibly important. I think those who are unable to do that find it very off-putting. But it’s not about gliding through life on a magic carpet. It’s about persevering over countless, what will sometimes feel like unbeatable odds.

“You feel like a piece of gum on the bottom of someone’s shoe” (62).

We all know how that feels, don’t we?

“When juggling as much as you are, remember that some balls are glass and some are rubber. You can’t drop the glass balls” (137).

I think this had the biggest impression on me. I’ve been really thinking about and trying to prioritize and this analogy of the balls really spoke to me. The only thing is that I came to the conclusion that school/work, health, and family and friends are all glass balls. So I still need to work on it, but I think this helped me to really start thinking about what really matters in my life.

“Don’t hang out with anyone who doesn’t understand why you’re so wonderful, or who needs to be told, or who doesn’t tell you at regular intervals or when you forget” (146).

Lately I’ve been getting such a crazy mix of compliments and criticism that I haven’t been able to make heads or tails of it. But the truth is that we all deserve to be surrounded by people who think we are great, if for no other reason than that we are our own, unique selves and no other person in the world can replace that.

‘You should live as though you know you are going to be famous. Even if you aren’t, you’ll still have the satisfaction of knowing exactly how you spent your time’ (151).

I just love this idea! It strikes me as being so hopeful. Act like everything you do matters, even if in the end it only matters to yourself.

“You’re going to have to learn how to pat yourself on the back eventually” (156).

Now, you’ve probably realized that most of these quotes are about self-esteem and overcoming odds. And it shouldn’t come as any surprise that they spoke to me.

*****

So here’s my charge to you (and don’t say you didn’t see this one coming): write a letter to your “younger” self. Tell yourself the things you know now that you didn’t know then.

I’m planning on sharing mine with you, but you don’t have to share yours with anyone. So do yourself a favor. Read “What I Know Now” as a gift to yourself. And look for my letter to my “younger” self tomorrow.
*****
(Spragins, Ellyn. What I Know Now: Letters to My Younger Self. New York: Broadway Books, 2006.)

Unloading

I haven’t had a substantive post in nearly a week, which is a long time for me. I’ve been working through a lot and trying to make sense of myself and the world around me.

I’ve been trying to make sense of the misunderstanding that occurs due to illness and I’ve begun to realize where the roads for healthy and sick people diverge.

When I began this process a little over a year ago, the end goal for me was to have a diagnosis. I convinced myself that along with a diagnosis would come some kind of inner calm. I would no longer have the panic attacks in the middle of my theory class that I concealed regarding if this was the last night of my life, is this really how I would want to be spending it? Because at that time, there was so much unknown. And while a diagnosis isn’t the only thing that makes an illness real, there is no less uncertainty that comes once you have a label to pin on yourself.

I realized that my world changed when I received my diagnoses in a way that can only happen if you are ill. It was like when I left the hospital, my world had completely changed, but everything around me moved the same way that it always had. In other words, I changed, but nothing and no one else had. While I was seeing the world in a new way, with new eyes, everyone else viewed me (and the world, my world) as they always had.

So how does one cope with a world that is only different to you?

Some people find it difficult to face the truth ever. I am forced to face the truth about my life and my future everyday. So if that breeds jealousy, envy, or resentment, I’m only half sorry. Because I didn’t ask to be here. And in a million years, I would change things if I could.

I feel like something people don’t understand is that I’m not making an excuse, I’m providing an explanation. The thing I keep trying to convince myself is that my super human powers of working myself to no end can no longer be. I keep trying to take my mom’s advice to heart that my 100% is everyone else’s 75%, so when I’m working at 75%, it’s like I’m still at 100%. Does that make sense? It does to me, although it’s hard to believe.

But the truth is, sooner rather than later, I have to acknowledge my illnesses as a real part of my life and what they mean for my future. In order to do that, though, I also need those around me to acknowledge it, as well. I need to be able to say and do things without people asking questions or getting angry or frustrated. I need to stop fooling myself into believing that I’m the same person I was before all this and that I can do the same things I did before. Because I’m not and I can’t. And maybe those who were in my life before all this don’t like the person I’ve become. And that’s okay. I don’t always like me, either. But I’m trying to work through that. And I’m trying not to be a poor me, always dejected kind of person, but that’s a little hard when I never know exactly how I am going to feel.

Talking to one of my friends the other day, she mentioned that she was having side effects from a medication she is on and that with aching joints and muscles nearly constantly, she kept telling those around her that she understood what I must go through. And she can’t imagine feeling that way for an indefinite amount of time.

And it’s funny because that question has been posed to me several times recently by outside observers.

How does it feel to have to deal with all of this forever?

Do you ever consider that question?

Um, let’s see. How does it feel? Pretty shitty, actually.

And do I consider that question? Only multiple times a day.

I have been struggling with Doctor C’s order of a restricted schedule. I truly have been trying. The reason that I haven’t been succeeding is because a 10 p.m. “bedtime” assumes that my life takes place in a vacuum and that nothing will happen that will send me into a tailspin or send me into hours worth or analyzing and re-analyzing a given situation. I have made an effort to get no less than eight hours of sleep a night and that does seem to be working, although the benefits to my physical and emotional self are still questionable (at best).

As of late, I’ve really been feeling beaten down emotionally. The meanness makes me cry and lately so does the kindness, because it is such a rare occurrence to have someone listen and attempt to understand who isn’t required to do so.

It’s funny how the way we see ourselves and how others view us can be completely different. Lately I feel like my emotions are all over the place and my life is spinning out of control. I’ve been seriously considering the pros and cons of leaving graduate school. And yet, through all of that, at every turn people are telling me how impressed they are by my work and my fortitude and my togetherness. And my response is that I want to laugh. Are they really serious? Are they really talking about me? It’s only a matter of time before they talk to this one or that one, who will certainly set them straight about the truth about me. But it also made me realize that lately I’ve only been able to focus in on the negative comments and interactions that take place with those around me.

The other day, for instance, the professor I teach for asked a question in lecture. One of my students answered with a nearly verbatim response of what I had taught earlier that day. The professor commended the student on the answer, but suggested the student must have had helped and asked who the student’s GSI was? The student promptly told the professor that I was his GSI. In the moment, I felt like I was being singled out. I felt stressed and anxious about the implications of the situation. But as I shared the account with others, they made me realize that this was truly a good thing. My student not only knew my name, but actually absorbed the information I had taught, the professor saw what I’m teaching, and my students are now more aware than ever that I actually do know what I’m talking about.

So I know this is a lot to process and it’s probably not my most cogent post ever. But I’ve been too emotionally full to attempt to unload until now.

(P.S. I don’t have to follow the 10 p.m. bed rule on days where I have my evening classes, hence why this post is being written and posted at this time!)

(P.P.S. No, I couldn’t come up with a more creative title for this post. I’m running on very little right now and it says what it is supposed to say!)