Thursday, August 28, 2008

Reminder: Call For Submissions!!!

*************************
PLEASE FORWARD
*************************


CALL FOR SUBMISSIONS:

Are you:
- A woman in your twenties or thirties who has a chronic illness, or
- A woman who is older, but was diagnosed with a chronic illness in your twenties or thirties?
- Are you either one of those and you blog about your illness?

If so, I am working on a project collecting essays from women about their experience with chronic illness. There are many books available that chronicle the story of one person. And they are great, but… I’m interested in providing women like me with a variety of stories that they can relate to. Although the diseases and symptoms may be different, the overall experience of chronic illness is very similar. I am also interested in having people tell their own stories.

These stories should be in your own words! Tell it well and tell it from the heart!!!

Submission guidelines are the following:
- Essays should be between 5 and 20 pages.
- Please also include a few pieces of advice at the end of your essay that you think other women with chronic illness might find useful.
- Please include a paragraph or so about yourself.
- If you are so inclined, include a picture of yourself.

The end goal is that these essays will be compiled and turned into an anthology for publication.

*** DEADLINE FOR SUBMISSION IS OCTOBER 1, 2008 ***

ABOUT THE EDITOR: Leslie Rott holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently a graduate student in the sociology Ph.D. program at the U of M. Expressing talent in journalism during her days as an undergraduate student, she has written for a variety of publications, working as a reporter for The Mackinac Island Town Crier and The Michigan Daily. She currently authors the blog Getting Closer To Myself (view here), which chronicles her journey with her own illness and other aspects of her life. And she was recently interviewed by Rosalind Joffe for her widely read blog, Working With Chronic Illness. The interview can be found at (view here).

Submissions or questions? E-mail: gettingclosertomyself@gmail.com.

A Note About National Invisible Chronic Illness Awareness Week

This year, National Invisible Chronic Illness Awareness Week is being held September 8, 2008 to September 14, 2008.

When you have time, make sure to check out the site, www.invisibleillness.wordpress.com. There is tons of great information and resources there.

There are also a lot of moving stories from those who have or have been touched by chronic illness. I have been featured as a guest blogger on the site. You can check out my entry, “Unlikely Chameleons”, here. (Sorry, that entry has not and will not appear on my blog. You’ll have to visit the Invisible Illness site to read it! (And please do))

Wednesday, August 27, 2008

The Student Becomes The Teacher

“Teach your children well […]
And feed them on your dreams
The one they picked, the one you’ll know by.”

- “Teach Your Children” by Crosby, Stills, Nash, and Young

I have wanted to write a post about teachers for a long time; about the fact that some of the best lessons learned in life are those that occur outside of the classroom. But it wasn’t until these last few days, when I was sitting in GSI (graduate student instructor) training seminars and workshops, when I, the student, literally became the teacher that I was finally able to understand – everything that happens in life, both good and bad, has something to teach us, both about ourselves and about the greater world in which we live.

When I finally received a diagnosis for my various chronic conditions, one of my friends told me that I would end up doing something truly great because (or in spite) of my illnesses; that I would use them to empower, rather than to hinder, the things that I do in my life. I really did not believe this person at first. I thought, for the most part that my life was over. How could I possibly glean energy and enthusiasm from an aspect of my life that seemed to be challenging me to my very core, exhausting me at every turn, and sucking (what felt like) the life out of me? As time has gone on, and I have reached out to others like me, I know it won’t be easy, but I will persevere.

And honestly, I think for many of us with chronic illnesses, life lessons are very real. They do not come from a worksheet or words written on a chalkboard, but rather, they are the things that we learn in living with, adapting to, and coping with chronic illness. Almost nothing you learn in school (save being a psychologist or social worker) can prepare you for being diagnosed with any type of ailment that significantly alters your life.

And I think, as teachers, what we expect from our students and what our students expect from us, is similar to what we, as patients, expect from our doctors. (I’m oversimplifying here, but…) As teachers, we expect our students to engage in the subject matter, to be respectful, to do their work, and to come to us with questions and concerns. As students, we expect our teachers to give clear explanations of material, to be up to date and knowledgeable on their subject, and to get to know us, not just as students, but also as people.

As patients, we want our doctors to be passionate and well-versed in their field, we want them to respect us and treat us as people, rather than simply as patients, we want them to be clear with the medical information they give us, and to be willing to answer questions and address any concerns that we may have.

See the parallel?

For me, a good teacher is someone who encourages me, fills me with hope, instills a love of learning, and believes in me to achieve whatever I set my mind to. I realize now that very few teachers I ever had fulfilled all of these criteria. But the important thing is that they fulfilled one of them. They are only human. And so are our doctors. Sometimes we forget that.

It’s also important to understand that like the teacher-student relationship, the doctor-patient relationship is a reciprocal one. In both relationships, each person will, even inadvertently, at some time or another, play the part of the student and the teacher. Just as we have much to learn from our doctors, they have much to learn from us (and I mean that in a human sense, not an experimental one).

Most in academia will agree that being a student is a life-long pursuit. Gaining knowledge and understanding of the world is an ever-evolving process. So too, is dealing with chronic illness. I have learned, rather quickly, that the journey from diagnosis to acceptance can be quite long and painful. And that the pattern of “accept” and “regret” will vacillate, possibly on a daily basis. But I have also learned that with the right tools, I can live a productive and fulfilling life, even amidst the constant cloud of chronic illness.

There have been a lot of things that have shaped my identity and the person that I am today. Throughout my life, teachers have shaped how I think about myself and the world around me.

Similarly, in a very short time, my chronic illnesses have taught me a lot about myself. They have taught me what kind of person I want to be, what I need and expect from others, and how these two (sometimes opposing) forces work in tandem to shape my life.

What I hope to teach my students (and my chronic illnesses) is that I am a forced to be reckoned with. I have a power and authority deep inside of me that is waiting to be unleashed, and once done so, will be unstoppable.

As I begin my journey as a teacher, I bring with me all of the lessons I have learned and identities that have become a part of me throughout my life. My life as a student and my work life, now as a teacher, become one. We all take on many different roles in life, but that doesn’t mean that we can’t learn from those roles all the time (even when we aren’t in them).

My chronic illnesses have given me an inner strength that I do not think was in me before. I feel better able to face the world because I know (most of the time) that there are more important things than deadlines, papers, and exams, and that while my profession is important, my health has to come first (something I am still learning).

Thinking of the doctor-patient relationship as similar to and emulating the teacher-student relationship obviously brings up issues of power and authority. But this comparison also emphasizes the reciprocal nature of the relationship – teachers give knowledge to their students, and students give knowledge to their teachers; doctors provide knowledge and understanding to their patients; patients provide knowledge and understanding to their doctors.

For patients, doctors, teachers, and students, maybe we can apply this thinking and build better relationships with those that are a large part of our lives, but that we often take for granted.

Tuesday, August 26, 2008

"Today's The Day"

I think many of us with chronic illnesses have often felt like getting out of bed is a big accomplishment. As I finally face down the final “hump” in what has been one of the busiest weeks in recent memory, I wanted to offer a song that I think touches on this, so I give you...

*****

“Today’s The Day” by Aimee Mann:

“Better pack your bags and run
Or stay until the job is done
Baby you could sit and hope
That providence will fray the rope
And sink like a stone
Or go it alone

And isn’t it enough for you
Isn’t it enough?
Isn’t it enough for you
Isn’t it enough?
For you...

So better pack your bags and run
Send it to oblivion
Where you don’t look like anyone
That anyone would care about
And do what you do
Till it buries you

And isn’t it enough for you
Isn’t it enough
Isn’t it enough for you
Isn’t it enough

And isn’t it enough?
Like Major Reno on the bluff
Wondering aloud if help is on the way

And baby isn’t this your chance
To make a break with circumstance

And isn’t it enough to prove today’s the day?
Isn’t it enough to prove today’s the day?”

From the album, “Lost In Space

*****
I first heard this song in one of my favorite movies, “Enough”. And yes, I’ll admit that a movie about spousal abuse that has Jennifer Lopez in it is a weird favorite movie to have.

But anyway, when I first heard the song, I thought it was by Sheryl Crow. But it’s not. It’s by Aimee Mann, who happens to have been included in “Six Word Memoirs”.

Grand Rounds "Rural Doctoring" Edition

Be sure to stop by Rural Doctoring and check out this week’s edition of Grand Rounds.

Rural Doctoring features a ton of great posts, including one of mine… and relates it all back to Shakespeare.

Love it!

Monday, August 25, 2008

Have You Ordered Your "Spoon Theory" Poster Yet?



When Jenni over at ChronicBabe posted about this being available from Caf├ęPress, I was so excited.

“Spoon Theory” has really helped me, not only to understand lupus, myself, but has also helped me to explain the disease and its implications to others.

And I know that it has impacted other chronically ill people, as well, not just those with lupus.

I can’t wait to frame this and put it up on my wall!

Pizza, Anyone?


Wow, I know I haven’t posted one of these in a while. But who has time to cook anymore? It seems that this summer, I have become the queen of anything boxed, pre-made, microwave-able, and takeout-able. While I’ve still managed to keep it pretty healthy (when I’ve been eating), I’m trying to get back to my old ways.

So tonight, instead of turning on the microwave, I turned on the oven.

And I know that despite my best efforts, this really doesn’t count.

Because I used a store bought pizza crust, jarred sauce, packaged shredded cheese (fat free), and a sprinkle of capers –and threw it all together in about three minutes.

But it looks pretty good, doesn’t it? I know it’s not Chicago style, but I’ll have plenty leftover for tomorrow night, after a full day of GSI training.

The Hospital As "Pick-Up Joint"

Every once in a while, I try to post something that is a little more light-hearted, not so doom and gloom, something on the lighter side of being chronically ill. It doesn’t always happen, but today, you are in luck.

The last few weeks of doctors’ appointments got me to thinking…

Yes, at first glance, this whole idea (as the title of the post suggests) might sound disgusting and repugnant.

But for a 20-something with several chronic illnesses who feels like she spends more time at doctors’ appointments and waiting for prescriptions than anywhere else, it makes intuitive sense. I see my doctors more than I see a lot of my friends.

Now, to answer the obvious question, it hasn’t happened yet. I haven’t dated anyone I’ve met at the hospital. I haven’t actually met anyone yet (in that sense)... But in reality, why not?

It’s not as if I go to doctors appointments with the express goal of meeting someone. And I certainly don’t go roaming the halls playing Florence Nightingale. But in the back of my mind, there certainly is a little bit of thought brewing that well… maybe it’s not such a bad idea.

And I’m not talking about dating my own doctors, because that is wrong… on so many levels. But doctors that I’m not a patient of aren’t off limits. And there aren’t too many other people my age that grace the rheumatology clinic, so chances are, we wouldn’t even have diseases in common, if I met a patient.

On the one hand, this post is meant to be humorous and satirical. On the other hand, I’m really serious. I know, though, that there are a lot of potential complications I’m leaving out (on purpose).

I mean, I don’t really go to bars because I can’t drink and the smoke bothers me. Basically, I go to class or work, go to coffee shops, and go home. So, if I’m not meeting people in any of those places, that only leaves one potential place.

And just think about it. A backdoor tryst with a young resident? It’s so soap opera-esque, it just might possibly happen.

Because let’s face it, I’m not getting any younger, and certainly, this body of mine isn’t either.

I know, this brings up bigger issues in my life, like the fact that I’m single and alone, and have no romantic prospects lined up for, well, let’s just say, the foreseeable future. But the point is, I’m single, alone, and chronically ill. And as we all know, chronic illness complicates just about everything.

Sunday, August 24, 2008

An Opportunity To Help With Research

Justin Guild, a graduate research assistant at Purdue University, contacted me in order to spread the word about a health communication study he is working on with Dr. Jeong-Nam Kim.

Justin wrote, “[…] our research explores how information sharing behavior through online communities influences coping strategies among people with chronic conditions […]”.

The survey is purely academic in nature and takes no longer than 5-7 minutes to complete. I actually found this link via another blog and took the survey several weeks ago. It was easy to complete.

You can find the survey here.

I wanted to share this information with my readers because as a graduate student, I know how difficult it can be to obtain participants for research studies, especially when studying communities that aren’t necessarily easily accessible. I am also hoping to conduct an interview study on blogging at some point this year.

So, please take a few minutes to help Justin out!

I'm Back... But Not For Long!

I’m back from my family trip to Chicago. It was fun. It was nice just to relax, even though the arthritis was gnawing at my joints.

You know, it’s liberating to forget about e-mail, Internet, and blogging for a few days. Except when you come back and have to get caught up…

Anyway, this is going to be a crazy week. GSI training, or as I like to call it, the brief intro before my foray into teacher-dom is for three whole days this week. Then I’m off to my parent’s house for a cousin’s wedding.

So, don’t be surprised if the majority of posts I put up this week are short!

Wednesday, August 20, 2008

How Do You Get Your Doctors To Talk To Each Other?

Personally, I think this is a huge issue with my care.

Put simply, my doctors don’t talk to each other. I know this because I end up being the one to fill each doctor in on the appointments I’ve had since last seeing them (which tend to be a lot).

Now, I’m not saying that’s necessarily a bad thing. It’s good. It makes sure that I am on top of my health, which is as it should be.

But when I am seeing three different specialists, plus my general practitioner, and the various support staff that I encounter at pharmacies, labs, and outpatient clinics, it isn’t easy for me to facilitate this communication on my own. Plus, I’m not a doctor. I don’t understand exactly everything that they tell me, and there are things, also, that I don’t get told about directly.

At this point, I’m lucky if the report from one doctor is sent to the correct (other) doctor.

I know that having your medical team communicate is an essential task when you have an illness or set of illnesses that warrants multiple doctors and long-term care, but I don’t know how to do it.

I think that, overall, I’m fairly hands-on and proactive about my medical care, given my age and relative inexperience with the medical profession (until now). But this issue is a huge complex in my life. And I’m sure it is for others, as well.

These various doctors make up my healthcare team, and together, they should be committed to moving my care in the right direction.

Along with doctors talking to doctors, there is my job as a patient, being forthright and upfront about new symptoms and things about my care that I don’t understand. And overall, I think I do a pretty good job of communicating with individual members of my team.

But I’m not one of those patients who has been in the system long enough to take my own vital signs and immediately know when something is a problem. I’ve only recently been able to really recognize a flare.

I guess it’s hard, too, when there is no real “leader” of this team. My general practitioner is extremely helpful with offering advice, but in terms of the care I receive, that mostly comes from my rheumatologist.

But I definitely feel like often times, lines get crossed between doctors and I am the one forced to untangle them. As one can imagine, this isn’t always easy.

So, other than somehow forcing our doctors to sit in the same room together and discuss our health care, how do we fill this void, making it as simple as possible for both patients and doctors?

Three Weeks, Four Doctors Appointments Later, and Three Pounds Lighter

Yeah, the title of this post pretty much sums up the last few crazy weeks.

Being off the CellCept, the itching got worse. So I went in to see Doctor C, who put me on Zyrtec and back on the CellCept and took me off the hydroxychloroquine, because apparently itching can “rarely” be caused by it. Since when has Doctor C known my body to do normal (as in not rare) things?

It was, as per usual, a very weird appointment. I felt like I was being tested, being asked trick questions.

Doctor C: How much prednisone are you on?
Me: None.
Doctor C: Right answer.

Uh, right answer yourself. I’ve only been telling Doctor C I wanted off since January! And what, was I going to get addicted to one milligram of prednisone? I don’t think so.

Doctor C inspected the areas of my body where there was sort of a rash, in connection with the itching. Then Doctor C says to me something like, Well what about the stuff on your face? Now granted, Doctor C is a rheumatologist, not a dermatologist. But shouldn’t even a rheumatologist know the difference between acne caused by prednisone and a rash?!? The comment was an insult to both of our intelligences.

Doctor C: Have you been exercising?

Yes, this seems like an innocuous question… when you actually know what it means!!! This question pretty much came out of the sky. Like it literally came from nowhere and had nothing to do with anything we were discussing. So really, I had no idea whether the point was that Doctor C thought I was exercising too much or too little. Why can’t doctors just ask normal questions? Why do I always feel like I’m being tested?

If it had anything to do with the fact that I lost three pounds in a month and a half, my guess is that my lack of appetite had something to do with that. When I say I’ve had very little appetite, what does that mean other than I haven’t been eating all that much? Hence why it was no surprise to me that I had lost weight since my last appointment.

The one good thing was that Doctor C remembered the issues I was having from work and asked me about them. I said that work was good because it was over. And we had a nice little laugh about that.

The last few weeks have been filled with the worst blood draws ever!!!

The muscle in my left arm and my right hand, just below the bottom knuckle of my ring finger were bruised to the point where I couldn’t touch the muscle or fully flex the fingers of my right hand. Of course, the bruises remain. And I can’t forget the blood draw from this morning, when there was blood going into the vial and running down my arm. It wasn’t so much the blood oozing out of my body that I was worried about as it was the khaki Capri pants I was wearing. Blood and khaki just don’t mix!

I’m not sure why it has been so difficult, but I’ve been told over these past weeks that I have stubborn veins and a very narrow nose. Meanwhile, I really wanted to tell these people that I wasn’t in the mood for their closed-minded comments.

After all this time, I guess I shouldn’t really be shocked by the tactlessness of anyone anymore, but the tactlessness of those in the medical profession continues to surprise me. Do they not realize that I’m aware of how poorly certain parts of my body work (or don’t). I don’t need to feel poorly about the ones I thought were working properly.

I have a filter, as is apparent from all of the things that I wanted to say during many of these conversations, but didn’t. But does no one else on the planet have a filter anymore?

I got to meet Doctor G for the first time, who took over for Doctor E (ENT). Doctor G was super nice. Plus, I don’t have to go back for another eight months! And today I saw Doctor D (Gastroenterologist), and if I’m lucky, I won’t have to go back ever again!

Being off the hydroxychloroquine has been a real bummer because my arthritis is flaring badly. But the itching is much improved, so what to do?

I’m off to Chi*town with the fam for a few days. I’m sure you’ll be glad to have a break from me, as I’m back to my daily postings! Don’t worry, more when I return!

Tuesday, August 19, 2008

Another Must Read!!!


As I mentioned before, I’m really into anthologies lately, from the traditional to the extreme.

“Not Quite What I Was Planning: Six-Word Memoirs By Writers Famous & Obscure” is definitely of the extreme typology! But it is truly an amazing collection of “short” stories. I bought the book today and read the whole thing, cover-to-cover, today.

And I know, this isn’t the type of book that you’re really supposed to sit down and read cover-to-cover, but I did!

Some of the memoirs are mantras. Some are famous sayings or the titles of books. Others may only have meaning to the one who wrote it.

Some are life’s deepest secrets, never shared with anyone… until now.

Some are by instantly recognizable names - Nora Ephron and Deepak Chopra, to name a few. Others are by people just like you and me.

It’s not about using proper English. Verbs are turned into nouns and vice versa. It’s about discovering oneself, six words at a time.

Plus, there are pictures!!!

*****

The editors of the anthology suggest, “…it’s a thousand little windows into humanity – six words at a time” (ix).

Here is just a smattering of my favorites, although there were far, far, far too many to include here. My highlighter and I had a very fun afternoon!

From the hilarious…

“College was fun. Damn student loans” (9).

“Tequila. Amnesia. Coincidence? I think not” (84).

“I think, therefore I am bald” (97).

“Thought long and hard. Got migraine” (199).

“Clumsy girl found adventure. Also, bruises” (204).


… To the reflective…

“Fourteen years old, story still untold” (6).

“In a Manolo world, I’m Keds” (68).

“Perpetual work in progress, need editor” (79).

“Outcast. Picked last. Surprised them all” (129).

“I’m the fine print. Read closely” (178).


… To the romantic…

“Love annihilated a thirty-year age difference” (99).

“We were each other’s favorite person” (195).

… To the random…

“Can’t tonight, watching Law & Order” (46).

… To the just plain sad.

“She said she was negative. Damn” (2).

“Wanted world, got world plus lupus” (22).

“I hope to outlive my regrets” (26).

“Young optimist: proven wrong. Prematurely old” (76).

“Educated too much, lived too little” (115).

“Like an angel. The fallen kind” (168).

*****

I like to think of these as personal headlines. If someone had to write a news story about you, what would the headline read?

Honestly, I think this whole idea is genius. I’ve decided to give myself the following challenge:

Write a six-word memoir everyday for a month.

Why? My whole thing is that in life, we all wear a ton of different hats, so I couldn’t possibly write just one.

My first thought for my six-word memoir?

Graduate student: Will write for food!

In high school, I was in a college-level history class. We had this huge paper due, and on the due date, I was the only one to turn it in. My teacher for that class told me that if people offered me money to write their papers for them, she wouldn’t blame me for doing it. This is, literally, the story of my life…

I came up with this one, taking a little inspiration from my blog name:

I’m getting closer to myself everyday.

I think a lot of us anticipate, if not for anyone, but ourselves, writing some kind of memoir. But we wonder, will the adventures of our lives fill enough pages? This book teaches the opposite. Your life can be condensed into six simple words.

Don’t say I didn’t warn you…

What will the result of this month-long self-exploration be? It might be ugly. It might be beautiful. Only time will tell… Look out for my month’s worth of six-word memoirs on October 1st!

So, here’s my challenge to you:

What would your six-word memoir be? Would it have to do with your chronic illness? Why or why not? And is it possible to just have one?

Let me know and I’ll hopefully post some, if not all of them!!! If you don’t want to leave them in comments, you can always e-mail them to: gettingclosertomyself@gmail.com.

And don’t forget to check out http://www.sixwordmemoir.com/. Feel free to share them, there, as well!
*****
(Smith, Larry, and Rachel Fershleiser, eds. Not Quite What I Was Planning: Six-Word Memoirs by Writers Famous & Obscure. New York: Harper Perennial, 2008)

Beware: Fruit Juice

Several of my medications come with the warning not to eat grapefruit while I’m on them.

According to this article on HealthDay.com, other fruits, such as oranges and apples, can effect the absorption of certain medications, as well.

The conclusion of the article?

Take meds with water to be on the safe side!

Check Out This Week's Edition Of "Grand Rounds"

Head on over to Six Until Me and check out the great combination of posts that Kerri has put together.

While you are there, be sure to look out for a post by yours truly!

Hope everyone is having a good week so far!

Monday, August 18, 2008

The Olympic Dream That Will Never Be


Okay, so I’m going to admit right off the bat that this was kind of a cheap trick to suck you into this post because of the title.

Because my friends that are reading this are probably thinking, what Olympic dream? This girl’s athletic?

But seriously, this post does have to do with the Olympics. Just… not in the way you may think. As I’ve been watching the Olympics over the past week and a half, I’ve been stuck wondering why it is that we only really want the things that we can’t have?

Yes, I’ve gotten caught up in Michael Phelps mania. I’m allowed… I can say that we went to the same school. I’ve also heard so many times that Dara Torres is 41 years old. If they mention her age again, I might just punch my TV. Although the way my hand looks from my blood draw last week, you’d think I already have.

But aside from all that, I’ve also gotten caught up in the fact that with all of the wonderful, inspiring stories of the games, there isn’t a single one of someone that involves chronic illness. I mean, there are a few stories of people who have or had cancer, but you don’t hear stories about someone with lupus or rheumatoid arthritis competing at this year’s Olympic games.

Why? Well, based on the way I’ve felt lately, I’m not sure it’s humanly possible. But apparently there are Olympic athletes currently competing that have such chronic ailments as diabetes and irritable bowel syndrome. But these aren’t, ironically, the stories you hear about. And it’s funny. This year’s Olympics aren’t a “science free” event. There has been plenty of talk about steroids, gene doping, and air quality issues.

And I know, these stellar athletes aren’t immune to disease, and many of them will fall prey to them eventually. I also know that in the back of my mind, I can’t help thinking that the wear and tear they are forcing on their bodies now, they will likely be paying for later.

But it is frustrating that, in an event that is termed, “One World, One Dream,” I certainly don’t feel like I have any part in that. And I am sure there are many of you out there who have watched with a mix of wonder, awe, and sadness.

You know, before I got sick, I couldn’t really care less about whether I was any kind of caliber of athlete. It just wasn’t something that was all that important to me. But now, now that there’s never going to be a chance that I will be a stellar athlete, it is kind of disappointing.

Now, don’t get me wrong. Being a good athlete isn’t everything (although it just might be in American society and would help explain my friends' ever-annoying obsession with working out). But chronically ill people are doing amazing things everyday. We are fighting for recognition of things that very few other people care about or feel they have a stake in. And where is the recognition for that?

Friday, August 15, 2008

"First Do No Harm"

This summer, I discovered and got addicted to the TV show, “Nip/Tuck.” A phrase that was thrown around often on the show was “first do no harm,” which was cited to be the cardinal rule of the Hippocratic oath.

I had intended to write a post about how hypocritical the Hippocratic oath is, only to find out through further research on the subject that “first do no harm” does not in fact come directly from the Hippocratic oath, but is merely “adapted” from it.

Like so much in the medical profession, this phrase, too, is a myth…

So what does it actually mean, “first do no harm,” and what is its significance for the chronic illness, if not the entire, medical community? On paper, it sounds great. But as many of us with chronic illnesses have learned, most medical interventions come equally with both risks and rewards - as I have thought about a lot lately, sometimes the medication is worse than the symptoms it was prescribed to alleviate.

For me, “first do no harm” makes me think of the unintended harm that a patient can be caused. I am drawn to the advice on all of my prescription pamphlets:

“Remember that your doctor has prescribed this medication because the benefit to you is greater than the risk of side effects.”

I wonder if, both the above warning and the adage, “first do no harm”, apply to subconscious emotional harm, as well as physical harm. What if prescribed medications, the entire chronic illness experience for that matter, change the patient’s self image, and/or brings out feelings and emotions that the patient never knew existed and is not fully able to deal with?

What if, in the process of trying to alleviate symptoms, the patient is caused psychological harm? At what point, if ever, is it the responsibility of the doctor to take note of these changes and respond to them? And at what point is it the patient’s responsibility to just “suck it up”?

There is, of course, a balancing act here. And it is one that is very subjective. There are risks that everyone probably agrees on, like taking medications that greatly increase ones risk of cancer. But what about say, gaining weight from being on prednisone. That might not seem too devastating to a middle-aged, male doctor, but might seem quite bothersome to a teenaged, female patient, even when the drug alleviates some of the symptoms the patient is being treated for.

In the chronic illness experience, then, is it possible, no matter how good the doctors or the medication, to escape unscathed, physically and emotionally? And what does that even mean in the case of chronic illness?

The emotional toll that chronic illness can have, as I have experienced first hand and battle on a daily basis, is really the unseen demon – it’s at the core of what makes me question the utility of “first do no harm”. The physical and the emotional are deeply connected. Even if the physical aspect is going well, the emotional parts can derail everything.

I also wonder if “first do no harm” even applies to the patient at all. Has my doctor ever asked me how I feel mentally, emotionally? When I had to go have steroid infusions for three days, did my doctor ever ask how they made me feel? Physically, yes. Emotionally, no. The physical and the mental work in tandem, but it is the physical that gets all the attention. I’m not in too much pain so that must mean that I am feeling great mentally, as well.

Or are our doctors just trying to protect themselves from harm? I know my rheumatologist is detached because rheumatology is a medical specialty in which good news is rarely given. Remissions don’t last forever. Cures rarely exist. Pain is often a daily experience. And I understand this emotional detachment and have come to expect and accept it. If it didn’t exist, my doctor would probably be a pretty depressed person. I also understand that being overly emotionally involved with a patient can cloud judgment.

But just because the doctor remains emotionally detached, doesn’t mean that the patient does.

I think sometimes our doctors forget that the daily grind of not feeling well, of pushing ourselves to do things that used to feel so easy, of just showing up for doctors’ appointments, is difficult physically, but also emotionally. Doctors can see abnormalities on x-rays and lab reports, physical manifestations in or on the body. But what they don’t see, and often don’t attempt to look for is the emotional pain that many of us suffer.

Chronic illness is neither easy for patients nor doctors. It is not sexy, glamorous, or fun. It is what it is. However, this failure to look at the emotional, as well as the physical, manifestations of disease seems to me to be a gulf in the doctor-patient relationship that needs to be closed. In order for “first do no harm” to mean anything, the patient as a whole person needs to be seen by the doctor.

Tuesday, August 12, 2008

An Elegy To 22

Yesterday was my 23rd birthday.

And I have to say, the past few days have made me realize all that is good in my life. It’s about knowing who those are in my life that love and truly care about me, who will be there to celebrate both the triumphs and the tragedies.

I’ve also felt sort of strange about this birthday. I mean, I’m celebrating the fact that I’m alive. Woo hoo! But I’m also wondering what happened to year 22. Where did it go? Year 22 was filled with a lot of ups and downs, probably more downs than ups.

Most of all, I’m stuck wondering if this is really as good as it’s going to get.

I mean, there are things going right in my life. I have two papers that I’m going to be submitting to scholarly journals for publication. I’m trying to get this anthology off the ground. I survived my first year of graduate school and am about to embark on the second.

But the health situation is still tenuous, at best. This itching is insane. The other day I scratched my thighs raw. I’m going to see my rheumatologist, yet again. And I just wish there was some reprieve from all of this.

I guess yesterday, most of the day, I did have a reprieve. And I guess if there is just one day a year that anyone deserves a reprieve from feeling crummy, it’s on their birthday. But after an evening out with friends, actually wearing something nicer than sweatpants and a t-shirt, proving that shockingly, I actually have a pretty good body under all those baggy clothes that I usually wear, my body was definitely feeling it. I was reminded again why I never wear heels.

I don’t know what I’m doing wrong or what I did wrong to deserve all this in the first place. If it’s true that what doesn’t kill you makes you stronger, in a short time, I should be made of steel or something. I’ll be so hardened to life, nothing will bother me at all.

I don’t want this post to turn into a “why me” lamentation. That’s not what this is about. I have some pretty terrific friends and a family that loves me and has selflessly put up with all of my crap.

I don’t want to be mourning the year that I’ve lost. I want to celebrate the years that I have yet to live. But that’s hard to do when things seem to keep going wrong at every turn.

Saturday, August 9, 2008

A Little Piece Of Inspiration

This was in the September issue of “Oprah” Magazine (Page 63), and I thought it was very appropriate.

“I know
it’s hard to be reconciled
not everything is exactly
the way it ought to be

but please turn around
and step into the future
leave memories behind
enter the land of hope”

- Zbigniew Herbert, from A Life

"For Keeps"


I’ve been exploring a variety of anthologies lately, to get some ideas for mine. There are some really good ones out there. I found “For Keeps” to be particularly salient.

“For Keeps”, edited by Victoria Zackheim, is a collection of stories by and about women on what it means to live in a female body throughout the various stages of the lifecycle.

I guess your body is not supposed to fall apart when you are 23 years old. Oops! I must have missed that day in school.

Okay, so I know what you’re thinking. This is a self-help book for menopausal women who woke up one morning to realize that they are not 2o years old anymore, with sagging skin, facing their own mortality head on. And while it’s true that most, if not all of the stories, are written by women in their 50s and 60s, there is a lot that resonates with the chronically ill, no matter what age.

This book made me laugh and cry. Whether you’re body loathing or body loving, I really think you’ll love this book. And since it isn’t written about chronically ill people, you don’t have to be chronically ill “to get it”. You just have to be a woman who has ever felt uncomfortable in her own skin. And who hasn’t?

Plus, you have to admit, the cover is pretty awesome!

*****

“To believe that I am healthy, to wish that I am healthy, and to live with the expectation that I will be healthy in no way guarantees my good health” (v).

I know this all too well, as I’m sure many of you do, as well. I have tried to will my illnesses away, tried to make them disappear with a thought and a snap of my fingers. But no matter how deep I furrow my brow or how much friction I put between my fingers, my illnesses stay.

“[…] life continues to remind us that the control we have fought so hard to attain can quickly slip away” (vi).

Control has been a big issue for me. And when illness becomes an issue in ones life, control slips away, a necessary component of life one may, unfortunately, never get back.

“But what happens when our bodies let us down and we find ourselves – our spirit and sometimes our will to live – tested? Do we crumble under the weight of the bad news, or do we become stronger, more determined?” (vii).

This is “the” question, isn’t it? It’s similar to a question I ask myself at least once a day.

“My passport has been stamped. In an instant I have emigrated from the land of the healthy to the land of the ill” (18).


I thought that this was a beautiful metaphor for what it means to go from healthy to sick. Sad, but beautiful.

“My car mechanic had a better bedside manner than this poor man, delivering his horror-movie news” (19).

This made me laugh. Doctors can be so hard to deal with sometimes.

“Now I understand. Animals don’t know that they’re dying. They can’t distinguish pain that is inflicted by an external predator and pain that is visited from within. They run to get away from the pain. They are trying to save their lives” (21).

I just really liked this passage.

“Fitness – particularly its false promise of control over our bodies and ourselves – is fickle and illusory” (74).


I think that this sentence was written for some of the people I know. There is so much talk about working out, and sometimes I definitely resent it because I can’t do the same things they can.

“Before I got sick, I had a lot of ideas about what body ‘perfection’ meant” (115).

‘Perfection’ is a funny thing. Before illness, society offers up examples of what it means to have the “perfect” body. Even though those examples aren’t really tangible, we try to make them real anyway. The thing is, once illness hits, that same ‘perfection’ doesn’t seem as important as it once did.

“This mystery woman leaves her car down the block, while putting mileage on her body instead” (131).

When you’re young, you don’t, or at least I didn’t, consider the cumulative effects of activities that I didn’t consider to be destructive to my body. I always pushed myself, but it’s not like I was addicted to drugs or alcohol or taking part in activities normally labeled as “destructive.”

“Health was no more my real goal than cheap tea was the object of the American Revolution” (132).

We do a lot in the name of “health”, when in fact, we’re actually doing it for looks and appearance. We don’t starve ourselves or work out obsessively in the name of health. This is something else entirely, but it wears the mask of health to make us feel better about committing to such acts against our own bodies.

“My body, like a long-suffering wife, was reacting not to any specific assault but to years of abuse” (138).

Again, we do so many things in the name of health. And when our bodies rail against us, we wonder why. And there is no way to pinpoint the exact cause or moment when things went incontrovertibly awry.

“There are days when I picture an invisible queue outside my door, diseases and conditions that have taken a number from a machine and are just waiting in a line to get in and nail me” (181).

Isn’t this the way it is for everyone, although only those of us who are ill really know to be cognizant of it. Once one switch gets flipped, we are always waiting for another light to go out, another system to fail, something else to go wrong.

“Instead of accepting illness gracefully, I turned it against myself as a sign of my weakness and self-pity. I thought my body had betrayed me; by not listening to its messages, I had betrayed it” (221).


Is there really a “graceful” way to accept illness? I don’t like this blame game, but I think, especially when already dealing with illness, it is easy to ignore signs of other systems going awry, but it is even more important to pay attention to our bodies and to fight for a voice when we know something is wrong and no one will listen.

“I’ve faced scarier enemies than the mirror” (241).


It’s easy to pay attention to all the superficial worries – too much fat here, not enough tone and definition there – but in the end, the mirror isn’t the scariest thing that any of us will face in our lives. So maybe rather than seeing it as an enemy, mirrors should be removed from our lives if we can’t consider them to be friends.

*****

I think it’s a hard lesson to learn that rather than loathing what are bodies aren’t or can’t do, we should celebrate what they are and can do.

When I began this whole illness process, I thought, all the little worries will just melt away. But in fact, I think I’ve almost become hyper-vigilant about them. No longer are working out and eating well necessarily going to solve the problem of my prednisone pudge. It’s possible that nothing will.

So many times the discussion resolves around failing bodies, bodies on attack mode. And you know, I’m kind of getting sick of it. I might not have “the” perfect body and I probably never will, but I have to think that my body is all I have. We don’t get to give bodies a test drive to see which one we like best. Like so much in life, we have to deal with the hand, or body, we are dealt.

We make promises to our bodies a lot. Promises that we usually don’t keep. I’ll work out more, I’ll eat less, I’ll eat healthier, etc. But why don’t we make the one promise we can actually keep? No matter what happens, we should love our body, because our body is for keeps.
*****
(Zackheim, Victoria, ed. For Keeps. Berkeley: Seal Press, 2007)

Friday, August 8, 2008

Prednisone Be Gone: The Story of Steriods

“Prednisone’s long-term side effects include depression and mania, weakness and fatigue, blurred vision, abdominal pain, infections, painful hips and shoulders, porous bones, acne, insomnia, weight gain, stretch marks, facial swelling, and nervousness. There are others. Those are just the ones I have” (138).

- Sarah Manguso, “The Two Kinds of Decay”

Let’s just say, if you’ve been on steroids, you’re as good as saying you’ve been to hell and back. I know. I’ve been there, too.

In every book I’ve read on autoimmune diseases and chronic illness, be it a medical story or a personal one, there is an endless discussion on steroids and why they are awful, yet wonderful at the same time.

Today marks the end of my seven-month adventure with the stuff.

Prednisone is like some kind of warped super hero, saving the world by making life miserable in other ways. While my pain was greatly diminished and I actually felt human again, I have suffered from insatiable hunger, cystic acne, and paranoia.

Being on steroids was like the most intense high that could bring on the lowest of lows. When I was on prednisone, I saw things through different eyes. It’s like, nothing could bring me down. Except, well, not being on enough prednisone.

I started at 10 mg and was quickly moved to 20 mg. But you have to remember that for a person my size, 20 mg is basically like at least 40 mg for a “normal” sized person.

And by the end, or maybe long before that, I was so ready to be off of it, that I almost didn’t care about the consequences. And even with tapering, I don’t care what anyone says, there’s withdrawal. And it sucks. It makes you feel worse than you did when you weren’t on prednisone at all.

And your body asks why you are doing this to it? And you ask yourself why you ever went on the stuff in the first place. And there is a constant battle between good and evil.

It made me feel whole and empty at the same time. I felt well, but that feeling of wellness was false. Because I knew that the minute the drug was gone, I would feel horrible without it. So horrible, in fact that I wished I was dead. But then, with it, every time I looked in the mirror and saw the rounded, acne-filled face, the shoulders and back that had accumulated fat in places I didn’t know fat could possibly land (and stay), I realized that reality is sometimes a fate worse than death.

The ability of the body to be tricked into things is kind of funny. And I am a little worried that this attempt at trickery will fail. But it’s worked so far, so I guess I’ll just have to see what happens and hope for the best (that I can get by without it).

I know that whether I will have to take prednisone again is not a question of if, but of when.

And if you’ve been there, you know I’m not exaggerating about this. It’s totally nuts. And it might just make you nuts.

Wednesday, August 6, 2008

"The Two Kinds Of Decay"


“The Two Kinds of Decay” by Sarah Manguso is a must read if you are into more artfully written, abstract tellings of chronic illness stories.

Manguso was diagnosed with Chronic Idiopathic Demyelinating Polyradiculoneuropathy (CIPD), somewhat like a chronic form of Guillain-Barre syndrome. But as she tells readers, “That’s the shortest name for what’s wrong with me […] and there isn’t a proper name for it yet” (19).

She is telling the story being, as I understood it, over a decade removed from the “action” of her illness. The book reads like a series of poetic blog posts, with memories of the events coming in spurts; no “chapter” is longer than five pages. Each story stands on its own and comes together to create an intricately weaved story.

*****

“She said my father would meet us there, would drive back early from his office on South Shore, and the three of us would go to the hospital together. That’s when I understood something might really be wrong with me” (8).

I can really relate to this and the love/hate relationship my illness has with my parents. On the one hand, it’s comforting to have them there – familiar in an environment of otherwise unfamiliar haze. On the other, having them there adds a level of anxiety, of importance, that maybe I could (attempt to) ignore if I was on my own.

“It was not easy to lie still with a fourteen-gauge needle in each arm, for four hours, shaking with cold that doesn’t go away no matter how many heated blankets are tucked over you. The cold comes from the inside” (12).

Such evocative imagery makes the reader feel that they are present with Manguso. She makes the reader sense experiences that aren’t easily sensed, and once imagined, aren’t easy to forget.

“All autoimmune diseases invoke the metaphor of suicide. The body destroys itself from the inside” (14).

We are told this by our doctors. At least that’s similar to what I was told. Your body has mistaken good, healthy organs and tissue for foreign substances that need to be destroyed. But the self-help books we read tell us that this negative thinking does nothing for the coping and/or healing process. It’s something, though, that I think stays with us for a long time.

“My blood came out dirty and went in clean. It came out hot and went in cold. It came out old and went in new. And the new, cold, clean blood was better than the blood I made myself” (15).


I just find this passage beautiful in its simplicity.

“My symptoms were so unlikely, by the book, that despite my reports of them, they were assumed not to exist” (30).

Haven’t we all been there? Weird and unexplainable symptoms are the hallmark of autoimmune diseases. And so many of our stories have started with doctors who didn’t believe us, who doubted that we were actually sick.

“The injection site stayed sore for five years, but not once during those years did I mind remembering the Irishman who had shot me full of [Vitamin] K” (73).

It’s funny the things that we remember and the things we opt to forget in this process we call illness. I wish I could say that there was a hot doctor that made me believe everything was going to be okay. But that’s not real life, is it?

“He was like a Black Panther of pharmacology. By any means necessary. I loved him immediately” (89).


I just love the irony of this passage and its symbolism.

“The only hard thing I’d done in my life was recovering from a disease. My self-image had been highly susceptible to that event. It constituted most of my identity” (136).


I think no matter how hard we try to keep our illnesses from impacting us at the core of who we are, it is bound to happen sooner or later.

“I grew used to being sick and looking forward to recovering. Then I grew used to being well again for a short while, knowing I’d be sick again sooner or later. Then I grew used to having no prognosis at all, because with a mysterious disease, all things are possible” (165).

Isn’t this game exhausting. Back and forth, well and sick, sick and well. It seems like there is no end, no reprieve from the roller coaster ride, the up and down, of what it means to have a chronic illness.

*****

This book is beautifully written. It is spellbinding in its complexity and craft. It reads more like poetry than prose, more like fiction than non-fiction. But it is a real story about someone dealing with illness and all that comes with it.

While I find every chronic illness story I read unforgettable, this one is memorable in other ways. The way Manguso describes the events of her illness and subsequent recovery emphasizes their medical unrest.

This isn’t your everyday, garden-variety health or self-help book. It’s hard to describe this book completely because I’ve never read anything quite like it. The details are so abstract, yet so vivid.

Manguso suggests in the book that, “This is the usual sort of book about illness. Someone gets sick, someone gets well” (183). I am inclined to completely disagree.

There is a dark humor present in the book that not many people could pull off successfully. Or maybe they could, but they wouldn’t garner much sympathy from the reader.

Manguso tells the story of eating French fries during aphaeresis treatment, only to realize that the fat from the fries would end up in the bag along with her plasma.

I mean, the stories she tells seem so unreal, but for those of us who have experienced chronic illness, it is only unbelievable in that we know that these things can and do occur.

You may also want to read the review from the New York Times or visit Sarah’s website, http://www.sarahmanguso.com/.


(Thanks, Jenni, for bringing this book to my attention)
*****
(Manguso, Sarah. The Two Kinds of Decay. New York: Farrar, Straus & Giroux, 2008)

Another Night Bites The Dust

I had some friends over last night to watch a movie that we had planned to rent and watch together.

I even made dessert the night before.

The pre-planning was there, but the execution was off.

An hour before my friends came, I got a bad lupus headache. The kind that comes just like that, but you can’t kick for anything.

But, in my infinite need for saving face, I was determined not to cancel. So I didn’t. But I ended up falling asleep during the movie. So out, in fact that my friends really had to wake me when the movie was over.

I could feel myself nodding off, and I counted down the minutes until the movie would be over, but with somewhere between a half-hour and twenty minutes left, sleep kicked in.

I hope those involved know that it wasn’t the movie or the company. It was me, a few days off my immunosuppressive, trying to deal with life, and pushing myself harder than I should have.

Yesterday was my last day of work, which turned into a free-for-all of finishing things up and making plans for future projects. I got home an hour later than usual and still had some tidying up to do before my friends came.

I guess I was just lucky that it happened at my own apartment and not someone else’s.

My friends didn’t act mad, or at least, they pretended not to be. And I guess that’s what I should expect from my friends… understanding.

But I don’t even understand it myself. I don’t understand how I can go from feeling great one minute to feeling awful the next. I don’t understand how one second I can have loads of energy and be zapped entirely the next.

I know, don’t cry over spilled milk. So I shouldn’t cry over a slept through movie.

But if I’m being honest with myself, it’s not just the movie. It’s the fact that this illness is impacting my life. That I’m letting it get in because I can’t stop it. And it’s about the countless nights this year that have been spent falling asleep way too early. And I know it’s only the beginning.

You know, it’s hard when you deal with academics all the time, or at least aspiring academics, who expect you to have the all the answers.

How am I supposed to have answers to the “big” questions, when I don’t even have answers about my own life?

Tuesday, August 5, 2008

I Need A Cocktail... Now!


Well, okay, not that kind of cocktail, although that might be helpful, too!

I’m talking about a medication cocktail. Just as I thought “we” had finally found the right combination, Doctor C thinks that my itching attacks may be from the CellCept.

And after being off of it for a few days – with a lot less itching – I’m inclined to think that (unfortunately) Doctor C might be right. Although I have come to finger sunscreen and chocolate as possible culprits, as well…

I guess that’s the risk you take in consuming medications that don’t start to work for several months. It takes that long to figure out if you’re allergic to them…

Plus, I’m back to feeling less than well. On the one hand, I feel surprisingly okay for being sans CellCept. On the other hand, all of my wonderful lupus symptoms are back, full force. The headache that is always there, nausea, dizziness, muscle pain, fatigue (which I never seemed to shake), the crushing of my organs by my bones when I lay down (at least, it feels that way), and the flipping sore throat that seems to have started all of this nasty business in the first place.

In the past few days, I’ve sent e-mails to myself that were supposed to be sent to other people. And I think, does lupus really work that fast? And my answer is yes, since it only took one day for me to go from “normal” to “sick.” Obviously, there was more “incubation” time than one day, but the time it took for my life to get flipped upside down in the first place was nothing, not even a minute. Or maybe it’s just my perception of my life without the CellCept.

So, what to do? I guess if I’m actually allergic to CellCept, I probably shouldn’t be taking it. On the other hand, if I really am allergic to it, wouldn’t my throat have closed up or something? It’s not like my skin was itching all the time. It’s just that when it did, it made me almost physically ill because it was so intense.

Considering I’m back to feeling plastered against the wall and kind of hung-over without having drunk any alcohol, I probably really don’t need “that” kind of cocktail. But what I do need is to find some medication that actually works and doesn’t make me crazy. While the CellCept succeeded in preventing me from rejecting my internal organs, I think it managed to cause me to start rejecting my skin. Kind of counterproductive, don’t you think?

Article Suggests "One-Third of Uninsured Are Chronically Ill"

According to a HealthDay article, the combination of chronic illness and a lack of insurance is a ‘lethal’ one.

The article suggests that between 1997 and 2006, access to healthcare for the chronically ill got worse.

Only seven chronic conditions were examined, though, not including rheumatoid arthritis – which usually is - or lupus.

You can read the article in its entirety, here.

Monday, August 4, 2008

"Life Disrupted"


I’m finally finished with and able to post on Laurie Edwards’ book, “Life Disrupted.” First, let me say that I really loved the book and that I highlighted in it like crazy. There was so much that I related to, all in one book, it was kind of uncanny.

*****

“Being well means being able to find a place for chronic illness within the context of our relationships and our professional lives, not at the expense of them” (5).

Laurie obviously knows the importance of words and context, and throughout the book she really helped change my view of the words “well” and “healthy.” There definitely is a difference, and that difference is very important where chronic illness is concerned. I think it is very easy to get caught up in being sick and all that comes with it, but being well and living well certainly aren’t luxuries only for the healthy.

“Despite the fact that many autoimmune disorders and chronic illnesses emerge during childbearing years, such attitudes about illness and age are not uncommon, and they make this journey more complicated. It also compounds the isolating nature of illness – not only are you sidetracked from the majority of your healthy peers by illness, but also you’re further marginalized from the very patient group you can finally claim as your own” (15-16).

I think this is completely true. I know how isolated I felt until I started my blog and realized that, especially in my age group, there were others suffering from chronic illnesses. As I have said many times before – the illnesses may be different, but the experience of chronic illness is very much the same.

I have always been one of those people who got along better with people older than me than people my own age, so for me, getting to know and making contacts with those older has not been that difficult. What has been hard, however, is, as Laurie alludes to, not feeling like I fit in anywhere. Even some of those older have been skeptical of someone so young being ill.

“If any other business operated with such poor customer service, it wouldn’t last, but as patients, we put up with it because sometimes we have little choice” (36).

Props to Laurie for making this point. Any of us with chronic illness knows that the medical system is neither convenient nor easy. It is just one of many aspects of our lives that doesn’t seem tailored to us. Appointments are often scheduled for early in the morning. They are long and tire us out. I know that many of my appointments have been followed by midday naps and emotional breakdowns.

I think it’s really nice that Laurie voices this because it is so true and really needed to be said.

“To say that diagnosis was the crucial turning point is both obvious and deceiving in its simplicity. It wasn’t just that I finally knew what community I belonged to; I could also divide my life into some sort of ‘before’ and ‘after,’ a place where all the unlike pieces finally fit together as a seamless whole” (80).

For me, like many of us, after being sick for so long, more than anything I just wanted to know what was wrong with me. I think there is a ‘before and after.’ And I think, despite how much we don’t want to rely strictly on medical knowledge, the necessity of a diagnosis can torment us. For me, that was all I wanted, and then once I had it, all I wanted to do was to go back to the way my life was before lupus and rheumatoid arthritis.

“Knowing the adaptive styles of our friends and healthy counterparts is just as important as their understanding of our own” (173).

I try to respect people’s boundaries. But it’s a difficult issue on both sides of the street. On the one hand, I don’t think that anyone knows the whole story. A lot of the emotional side happens in private, when I’m alone. I’ve started to come right out and ask people how much information they want. I’ve told them that they’re welcome to say none and I will respect that. Others have told me that they want to know what’s going on, but they’re afraid to ask because I might consider it prying. My philosophy on this is that if my friends ask me about something that I don’t want to talk about, I’ll tell them so. But if the lines of communication aren’t open, or at least clearly defined, it becomes a vicious cycle of don’t ask, don’t tell, and I think there are times when this causes resentment on my side and theirs.

“No one has a market on suffering. Though our perspectives are quite different, the healthy and the sick are entitled to the same empathy and understanding from others when times are difficult” (182).

I can completely relate to this. Earlier this year, one of my friends complained, very dramatically, if you ask me, about having the flu. I almost left the room. It wasn’t that I didn’t feel this person deserved sympathy. It was the fact that at that point in time, I couldn’t have killed for half the sympathy she was getting (for something that was going to go away in a few days). I think part of this goes back to understanding and mutual experience. The flu, my friends could understand, because they’d probably experienced it themselves several times before. My illnesses, on the other hand, were uncharted territory, even for me. But it was a difficult situation for me to handle.

Laurie is definitely right. Life is not a competition for empathy. And while both the sick and the healthy deserve such recognition, I think a lot of times the chronically ill do not receive the empathy and understanding they deserve.

“We put up with a lot on account of our illnesses – embarrassing moments, scary moments, difficult moments. Anyone who is going to become part of our lives has to face the same moments with us” (197).

I wish I could pass on this wisdom to everyone I know. I’ve had a lot of conversations recently that I need to know where I stand with people. I want people to know that they have a right not to be in my life if they don’t want to, because I don’t want to be surrounded by false and only sometime friends. Obviously, I want people in my life, but that means taking everything about me along with that relationship. And I know it is difficult for people my age to understand and accept illness in someone their own age.

*****

There’s so much that I could have included here, but I want you to read the book for yourself. I think there are a lot of great things about this book. There is humor, which I think is definitely needed occasionally when talking about chronic illness.

There are multiple stories represented, which I find crucial. Most of all, there is honesty. What struck me most is that there are things talked about in “Life Disrupted” that shouldn’t ever have to be discussed in life, let alone with and by people in their 20s and 30s. But they are and we do talk about them, not necessarily because we want to, but because we have to as a function of our illnesses.

That said, I think the book is more upbeat than melancholy. It shows that there are people in their 20s and30s living with and surviving chronic illness. It also puts a face on those who are young and chronically ill. The book has a unique way of humanizing the story, making me feel that I am more than a patient number and more than my diagnoses.
*****
(Edwards, Laurie. Life Disrupted. New York: Walker & Company, 2008.)

Friday, August 1, 2008

What Happens When We (I) Get Used To This?

Another thing that stuck out to me from Laurie Edwards’ book, “Life Disrupted” (full post on the book coming soon), and I wanted to write about further, was the idea of getting used to chronic illness.

I think, at least for me, as someone who is still in the early stages of this journey, it is a pretty scary thought to think of lupus and rheumatoid arthritis as a forever-kind-of-thing.

On the one hand, it’s hard to imagine ever getting used to this. On the other, I can already see it happening.

Like for instance, take the itching attacks and lack of appetite. For all intents and purposes, I should have e-mailed Doctor C about these issues weeks ago. But I didn’t. I pretended like they were nothing, even tried to self-medicate, but when none of my attempts worked, I finally caved.

There’s always the issue, the balancing act… It’s probably nothing, but it could be something…

People say that your life flashes before your eyes right before you die. I think many of us with chronic illnesses experience this long before we ever take our last breath.

For me, it was the 27 vials, waiting to be filled with my blood after my first rheumatologist appointment. It wasn’t my entire life, exactly, that flashed, but rather, a decision about the importance and viability of my life.

At that moment, the girl who heretofore hated shots and needles of any kind could have put a kibosh on the whole thing.

I could have said I was done right then and there.

But I didn’t. And now 2 vials of blood is nothing, and 6 or 7 are a good day at the doctor. I’ve become completely desensitized and removed from the experience. I guess you could say I’ve gotten used to it.

In some ways, that’s a good thing. I’m almost 23. I shouldn’t hyperventilate over a flu shot. On the other hand, it’s kind of sickening.

The pill bottles that line the counter and my daily/weekly pill organizer that hangs from the wall are constant reminders. Now every part of everyday (morning, noon, evening, and bed) is occupied by a pill to swallow, along with the hope that lupus and rheumatoid arthritis symptoms will abate and the side-effects of the medication won’t be more than I can handle.
I’m not complaining. I’m just making an observation.

I’ve become a regular on the hospital buses; some drivers even know where I live because if they are at the end of their shift, they offer to drop me off, around the corner from the last stop.

That’s the other thing, I’ve learned, er, I’m learning to accept help from people.

And just when I get used to the rhythm of my life with illness, I start to feel better. And then it’s a whole new set of issues to get used to.

"Ch-Ch-Ch-Ch-Changes"

It’s interesting… In Laurie Edwards’ book, “Life Disrupted” (full post about the book coming soon), she talks about “reentry” from the hospital ward to “the real world” as “transitioning”. I think the term is fitting in my case, too, even though I haven’t been in the hospital. Going from sick to healthy and healthy to sick, is literally becoming a different person.

I know that in a lot of ways, the person I am when I’m in a flare is a lot different than the person I am when I’m not. I also know that I rely on different sets of people during such times. Luckily, I have some people that are there through it all. But when I’m sick, I feel more deeply connected to others I know that are chronically ill.

Currently, and I don’t want to jinx myself here, I’m feeling the best I’ve felt in a while. And in some ways, I feel slightly disconnected from the chronically ill group, dare I say guilty. On the other hand, I am embracing this moment of renewed, at least better, health, because I don’t know how long it is going to last.

Definitely, I’m not so worried about not fitting in to the chronic illness community, because for most people, the severity of their diseases comes and goes. It is the healthy world that I worry about. Once labeled “sick,” it becomes a hard distinction to drop.

And so for me, it is those everyday changes, that even when I feeling well, remain. It’s mostly the things that happen behind closed doors, that others do not see, that remind me that I am not like everyone is. And difference isn’t necessarily a bad thing… it’s just different.

I don’t think I ever expected to be in the position to feel that being healthy, or at least healthier than a few months ago, would be difficult. But for me, it has been. I think the hardest thing for me is that suddenly “healthy” doesn’t mean suddenly “cured”. Healthy and cured are two very different things.

The past two weeks have been crazy. And it’s my own fault. My renewed health, which should be read as my diminished pain, has led me to believe, falsely, that I could do everything and more. I’ve felt like everyone has wanted a piece of me, and I gave no thought to the repercussions of giving freely of myself. It was only today, finally, that I began begging out of things. Only after being hit with that insurmountable fatigue and falling asleep at work did I bother to realize that I can’t do everything I used to and continue to be healthy.

It’s true that the fatigue actually hit a few days ago. I just hoped I could hold out for a little longer. Not… so…

It was easy to see this when I was feeling bad. Then, feeling well again gives the false sense that, along with a renewed sense of hope, everything else is renewed, too. I’m the type of person who believes that if I feel well, I should be doing all that I can.

And it’s far easier than I ever imagined to fall into my old ways of doing too much, having every moment spoken for… and kicking myself for it afterwards, when I’m too exhausted to think.

It’s still hard for me to admit that my old ways don’t work anymore. They are toxic, and albeit, possibly part of the problem.