Last Call: Call For Submissions!!!

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PLEASE FORWARD
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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.

Personal Problems And Public Issues

How about a (very brief) sociology lesson to get your Monday morning started off right?

In sociology, we often define things based on whether they are personal problems and/or public issues.

This past week, since I last posted, I have been grappling with the decision of whether to make my personal problem of illness a public issue.

Sometimes it takes looking at someone else’s situation to realize that something needs to be done about your own. And sometimes it isn’t until that point until you really get the message.

I found out last week, in the midst of everything else, that one of my students is severely acutely ill on top of having a chronic illness. The difficulty and uncertainty that this situation has caused deeply affects all involved.

It has also made me realize that I need to have a contingency plan for my own health. How bad will I let things get before I need to take steps to drop classes or withdraw from the semester (or graduate school) entirely? At what point does my being stressed out by a particular person or event require action?

This situation with my student highlights that ones ability to admit their limitations to themselves can have a profound impact on others.

Sometimes we have to look outside of ourselves because introspection can cloud our vision. And in the foggy murk that is encountered, we are left confused.

I have been putting a concentrated effort into going to bed early, based on conversations with my rheum last week. This hasn’t worked as well as I would have hoped mainly because I have been hit by more lack of understanding from friends and peers.

I’ve been recently made to feel by several people in my life that nothing I do is good enough. I feel like I am constantly having to justify that I am trying my best and that I am exerting effort, even if the accusing parties would beg to differ. Most of all, I’m really trying to make an effort to work on getting my health to a more stable place.

I felt really down in the dumps this weekend, depressed about a lot of things. One of my friends made a surprise visit yesterday and we spent the day hanging out. It wasn’t so good for the work situation, but I think it was much needed on the mental health front. I’ve come to realize that if work doesn’t get done today, it will still be there tomorrow, and then some, and then some more.

The other thing that frustrates me lately is that it seems some people are viewing my illnesses as an inconvenience for them. This really troubles me. As far as I can tell, the only one who should feel inconvenienced by all this is myself (and maybe my family). It’s not as if I woke one morning and said, hey, I think it would be fun to get lupus and rheumatoid arthritis today. Or that I’m really happy that for the first time in my life, I have a curfew!

(And what the healthy don’t seem to understand is that I’m trying to build a positive relationship with my rheum. If I go to my next appointment still feeling bad and Doctor C asks if I’ve been making an effort to go to bed early, what happens if I say no? Then there is no reason for Doctor C to trust me. And Doctor C might think that I don’t want to work on getting better, if I so casually disobey orders.)

Just because I can’t stay out late or decide not to do certain things at all, shouldn’t be looked at as inconveniencing others. And yet, the unpredictability that these illnesses effect, make me seem flaky, wishy-washy, and unreliable. In some ways, it seems to me that some people view having me as a friend as a liability. And that really isn’t fair.

As I’ve said all along, I don’t want to be a burden to other people. I don’t want to take in any relationship more than what I give to it. So, if there’s anyone in my life who really does feel that way, I ask that they to bow out now.

It’s no secret that chronic illnesses impact a variety of people in a person’s social network, not just the sick person. And I think more than ever before, this week has made me realize that all of this illness stuff requires a delicate balance, which often times ends up tipping the scales.

Academics and Nurses and Rheumatologists, Oh My!

I’ve been thinking and ruminating over a lot lately and these issues fall into three categories, hence the title – academics, nurses, and rheumatologists – the reasons for which I am about to make clear.

Let’s start with academics…

Now with teaching and everything, I’m spending a lot of time “in” the department, meaning that I’m around people in my department a lot more often than I was before. And honestly, I kind of wish I wasn’t. Spending time around these people kind of makes me crazy.

I’m finding myself needing to spend a lot more time in the computer lab. And all the while during these proverbial cram sessions, which by the way, seem to be happening more and more frequently as of late, I’m not thinking about the next great paper I may attempt to write. I’m thinking about my fingers and how important they are to me and how I need to preserve them. If you were to ask my student colleagues if such a thought ever crossed their minds, no doubt they would tell you those kinds of thoughts are "for old people" and shoo you away with a flap of their hand.

No, academia is not a high endurance career in that it doesn’t involve running actual hurdles on a daily basis. But there are certainly plenty of professional hurdles, plus little sleep and lots of coffee. The truth is, though, academia is taxing on the brain, because as those of us in the field know, we are always “on the think”. And you know what? Taxing ones brain all the time is just plain exhausting.

So, in my awful class, several people started talking about being sick or having been sick (we’re talking colds, flu, etc. – “normal” illnesses) and how hard it is to drag yourself out of bed to go to class when you’re sick…

Well, welcome to my flipping everyday. And nobody asks me how I’m feeling…

This is really the first time that I have seriously considered putting at least a hiatus on my graduate career. There are definitely people who don’t feel I measure up, and I’m starting to wonder if they might be right.

My work card is full and my dance card is empty. It’s difficult to socialize with people that might as well be from another planet. We might “live” in the same department, but our experiences are completely different. It’s hard to be in a world where work is the end-all, when to me, there are more important things in life. Certainly, my research is important to me. But in truth, my life is about telling the untold stories. It’s something I have done for a long time and will continue to do, regardless of whether I have three letters after my name telling me that I can, in the name of “science”, in the name of “progress”.

I don’t feel very much like I’m responsible for creating new knowledge. My advisor told me recently that she believes my work has the potential to be “culture transforming”. But if everyone chooses to ignore it, does it really exist? That’s how I feel right now, that I am always doing battle to be seen and heard. For my colleagues, my illness doesn’t exist because they cannot see it. I don’t walk around bent over, using a cane, or even holding my head crying out in pain. Because even if I was bleeding out my eyes, would they care?

At some point, I am going to have to fill out some bureaucratic paperwork that acknowledges that I’m sick. The reason for this is the following:

About the fact that at the end of the summer of 2009 I will have to embark on an eight-hour exam… all essays on the computer. Why stress about something that is nearly a year away? Um, I have lupus and rheumatoid arthritis, people, I don’t see how typing for eight hours is even humanly possible for me anymore. My fingers are starting to hurt already, just typing this paragraph of post.

But then I’m forced to wonder – what kind of limitations do I have? Are they real or imagined? These forms are designed for people who have clear, visible limitations. Not, it’s pretty f***ing hard for me to take a night class because not only do I not get my afternoon nap in, it screws up my entire schedule. But nobody thinks to care about that. Or the fact that situations can simply be overtaxing.

The other thing about documentation is that having this stuff on file with my department makes it real – to others and to myself. Having an invisible illness is both a blessing and a curse…

Now on to nurses…

So let me share another experience that I had yesterday, which I found to be most infuriating. I called my dermatologist, who I haven’t been to in several years, because I wanted to find out if there was anything that could be done about my residual prednisone acne. Before I went through the hassle of making an appointment to see my PCP, asking for a referral, and then attempting to get an appointment with the dermatologist, I figured I would try and explain the situation first, so if there was nothing that could be done (which I suspect may be the case), I didn’t have to go through all that plus pay a co-pay only to be told that I just have to deal.

So I called the office and asked the nurse if I could leave a message for my doctor. Word to the wise – verbal messages are never good. Period. Anyway, I digress. So I explained briefly the situation and was told that if it is something that “is bothering me”, I should just come in and that she wouldn’t pass the message on to my doctor. Then she proceeded to school me in the “complicated” ways of HMOs and how confusing the whole process can be. Yeah, thanks to people like her!

But it was clear on the phone that she was talking down to me, did not think that my problem was worth her time, and really, being just plain rude. I called to talk to my doctor, not some nurse on a power trip. Now, I don’t mean any disrespect to nurses, in general. But this particular one? Was that treatment really necessary?

It seems like people really want to pick a fight with me lately. And while last week, emotionally, I was all for it, this week those who have tried to make me feel small have succeeded in doing so. Big Time Smallness right here!

Why is it that some people need to make others feel small in order to feel good about themselves? Lately, I’m encountering more and more people who really get sick pleasure from making others feel worthless.

And as much as I would like to say that I am a much stronger person than allowing myself to be made to feel that way, sometimes it’s unavoidable. Sometimes the hurt caused by others is just too deep to shrug off.

And finally… rheumatologists…

With the way I’ve been feeling about things lately, this is what I wanted to say to Doctor C: “You went to med school, so you know what a rigorous academic environment is like. Add to that all my medical crap… how do you think I feel right now?”

Filter, filter, filter. Yep, that’s me. I just wish I wasn’t getting mixed signals from everybody all the time. It’s like, it’s bad to hold everything in. But the minute I start saying how I feel about things, people are like, okay, too much.

So what the heck am I supposed to do?

But it’s funny. I didn’t say that to Doctor C, but the conversation we had seemed to make apparent, that somehow, there was some recognition.

That said, there aren’t really any humorous tales from today’s rheum appointment. Sitting in waiting room full of people at least twice my age, seven tubes of blood, and three urine samples later, suffice it to say that I’m feeling even more physically and emotionally drained than I was before.

I think that the clear issue that came out of the appointment is the fact that emotionally, things are not going well. It’s no secret that I’ve been down lately – more down than normal. I find myself wanting to cry a lot.

I didn’t tell Doctor C this, but the questions were asked approximated… dare I say… humanity?

Doctor C asked about school, how many classes I’m taking, etc. I explained that in order to be teaching, which I basically have to do to stay in school, I have to be taking the amount of credits that I am. I mentioned my awful class/professor and the short version of the story. Doctor C’s response was that, that was bureaucracy at its best – good old U of M. But Doctor C (other than my parents) has really been the first one to acknowledge that and the fact that it’s damaging to students, namely me.

(Eventually I will have to confront this professor. But I don’t want to do it until I can remain fairly unemotional. And that isn’t going to happen anytime soon).

Doctor C talked a lot about how difficult it can be making people understand what it’s like when you don’t look sick. Where is this coming from? I was never expecting to have such a conversation with my rheumatologist, who until that point made me feel like I should just get over myself. I was never expecting to connect with the one person in my life who I really thought wasn’t on my side. Doctor C told me that I shouldn’t feel brought down by others just because I’m sick and offered to contact my advisor.

The prednisone issue came up again. Doctor C asked again if I wanted to go back on it. Honestly, it was almost a tempting offer. But I said no.

Doctor C thinks I need to get back to a more regimented schedule in terms of sleeping (in bed by 10 p.m.?), eating (actually making time to do so…), and medication. I completely agree (see my post on self-care). But it’s incredibly hard to do that in this kind of environment. Doctor C told me that even if to justify it to myself I have to tell people I can’t do things because of “doctor’s orders”, then that’s what I have to do.

But I know that no matter what, someone is going to be let down, whether that be my family, my friends, my doctor, my department, or myself. I’m never going to be able to please everyone and take care of myself at the same time…

The appointment really left me feeling emotionally drained and vulnerable. How is it possible to be fully clothed, feel naked, and yet know that people are looking completely through you?

Eleanor Roosevelt said famously, “No one can make you feel inferior without your consent” (I quoted that from memory… and was right…). I don’t recall ever giving people permission to make me feel like shit about myself. But then again, I do let them get away with doing it.

I don’t often cry when I write posts. But suffice it to say that there have been many tears today.

Well… my students have an exam tomorrow and I have to finish grading their papers. I’m up at 6 a.m. tomorrow to teach. Let the regimented schedule (sort of) commence (sort of)…

Lupus Pufus

A quick nod at my friend Maria over at My Life Works Today! She and I have been talking a lot lately about how great minds think alike and I am inclined to agree, yet again, based on her post today on lupus walks and illness advocacy.

Now, I’ll be the first one to tell you that this whole chronic illness community is about shared experience and not competition, but I can tell you that I was incredibly put-off to see that Oprah had devoted nearly all of her October issue to breast cancer.

While I am certainly sympathetic to the cause, as I think we all are, breast cancer advocacy is everywhere, even on cereal boxes. But where’s the advocacy for all of the other horrible diseases that plague women in this country?

You know, Oprah used to be the “poster girl” for going against the grain, but lately, all I see her doing is contributing to mainstream, middle of the road conceptions of life. And I’m sorry to say that I’ve had enough!

Now, I opted not to take part this year in walks for lupus or rheumatoid arthritis. The reason being that this is all still too new for me. So before you go calling me a hypocrite, think of this:

Imagine the scene in “Miss Congeniality” where Sandra Bullock is “gliding” across the street and a cab almost hits her. She yells at the cabbie, “I’m gliding here!” Well imagine that scene with me in it and I’m yelling at the cabbie, “I’m coping here!”

We all have different ways of dealing with our illnesses. For me, acknowledging my illnesses in such a “public” way is honestly something I’m just not ready to do yet. But that doesn’t mean that I’m not thinking of ways to get involved or educate those around me. And clearly since I blog about it almost everyday, I’m not going to be “silent” forever.

I think that it is important that all of us do what we can to be a part of the effort. While breast cancer survival rates are increasing, there hasn’t been a new medication introduced to treat lupus in over 40 years! What does that tell you?

And in her post, Maria makes an excellent, excellent point about the fact that it is pretty absurd to expect people who can barely make it through most days to be the ones solely responsible for the advocacy that happens. Obviously, if we don’t stand up for ourselves, no one will. But from the way I see it, there are very few healthy people really fighting for the cause.

So let’s be the change we want to see!

Life Happens...

Because it had to be said, so I guess I’m going to be the one to say it…

Recently I was talking with a friend while we were watching an episode of “Project Runway” (which is decidedly disappointing this season, but that is entirely not the point of this post) together.

And the subject of what advice we would give to first-year sociology grad students came up. What would we tell them that we know now, but didn’t know before we started grad school?

For me that’s an easy one:

Um… Don’t get sick?!? Just kidding… Although that is kind of good advice.

However, what I would really tell them is:

Life happens.

Now, it sounds deceptively simple, right? But the truth is, your sucked into graduate school with the naïve thought that you are going to spend the next five years (or more, as the case may be) in relative solitude, doing research, etc., but the outside world won’t apply to you. Well, the upcoming Presidential Election might, but really, not much else.

But I think for some people I know, it is truly shocking to imagine that there is a world of things that can happen outside of and aside from graduate school that make, not only getting through graduate school, but getting through the day, something that takes will and determination… not to mention… medication…

I can remember, really not so long ago, although sooner than I think, I will have spent a decade out of high school. And when I embarked on my journey to undergrad, I was filled with a similar feeling. For the next four years, I am going to be untouchable. All that is going to matter is school.

Now, this isn’t meant to sound selfish. It’s merely meant to be the truth (and possibly an indictment of higher education in America today).

Certainly, even in undergrad, crappy stuff happened. But it was nothing that, at least at the time, appeared to be life altering.

And then grad school happened. And it was as if getting into grad school meant that the next five years of my life were going to be filled with everything a person could want – financial security, romance, fun, and most importantly, a clean bill of health.

Well, my naïve thinking couldn’t have been further from the truth… because not long after entering grad school, as the story goes… I got sick.

And the thing is, I fear that I’m not the only one to hold this completely ridiculous notion in my head. I fear that others will hold it for much longer than I did and that when they fall, the sheer shock of it happening will prevent them from getting up again.

I don’t mean for this message to sound overly morose. In fact, I actually think that this is a fairly optimistic way of thinking. It doesn’t set you up for false hopes or disappointment. It means that things aren’t always going to go the way you planned.

So, it’s totally true. Life happens (Yeah, life. Life is what happens when you were to busy looking the other way). It’s a hard lesson to learn, and I’m not about to say that I’m glad I learned it when I did… Having a chronic illness just makes dealing with life (and everything that comes with it) a heck of a lot more difficult.

I Get Knocked Down...

“[…] I get knocked down
But I get up again
You’re never going to keep me down […]”

“Tubthumping” by Chumbawamba

I was told not very long into this whole “illness process” that eventually my illnesses would no longer be a part of my core identity.

Well guess what?

It appears that the more I try “seamlessly” incorporating them into my “core being”, the more they fight their way out.

You know, I’m really trying to make this semester work, but I’m not really feeling it.

I come home from my two night classes exhausted and in pain. There’s a time, about ¾ of the way through each class when the pain hits, enough to make me grimace, enough to make me contemplate leaving the room to cry.

And so I wonder, are there ever times that you just feel like crying?

For no particular reason. It’s not that the pain is so, so bad. It’s just the reminder that, oh yeah, on top of everything else, there’s this, too!

I guess the truth of the matter is that I’m feeling pretty overwhelmed.

In some ways, I feel like I’m being asked in every area of my life to do soul searching.

And do you know what I say to that?

ENOUGH ALREADY!!!

Wasn’t last year being hit with lupus and rheumatoid arthritis during my first year of graduate school enough? Didn’t I do enough self-exploration/re-evaluation to last a lifetime? Aren’t whichever gods are responsible for this stroke of whatever you want to call it satisfied?

Because I certainly am.

I’m sick and tired of feeling two steps behind when I used to be four steps ahead.

I’m sick and tired of feeling exhausted all the time.

And I’m really sick of getting sick the second that I haven’t been diligent with self-care.

And of course, issues abound. There seems to be no end to drama in my life.

And lately, I seem to be fighting back, which honestly, is a little disconcerting to me. On the one hand, it feels good. For a lot of reasons, I’m frustrated with being pushed around, feeling like a person that doesn’t matter, that people can simply walk all over.

On the other hand, though, I’m worried that my newfound “boldness” might get me into trouble.

The list of worries and cares seems to be never ending.

“Mama said there'll be days like this,
There’ll be days like this Mama said

(Mama said, mama said)”

“Mama Said” by The Shirelles

But wait a minute… Did mom really say that? And if she did, I don’t think she was including chronic illness as a factor (well, maybe when I’m 80).

Lupus Featured In "Woman's Day" Magazine

Thanks to a chronic friend and frequent reader for pointing out that there is a short article about Lupus in the latest issue of “Woman’s Day” Magazine.

The online version, which you can read here, provides some concise, easy to understand answers about the basic questions about Lupus, which might be useful to family and friends who find this unpredictable autoimmune disease even more baffling than we do.

"Fat Tax"? What's Next?

I heard about this on CNN this morning and my ears perked up. Alabama wants to make people who are overweight and obese (according to their BMI) pay a monthly fee as an incentive to “get healthy”.

I’m not even going to bother posting a link to this because all you have to do is Google “fat tax” or “Alabama fat tax” and you’ll find a ton of articles on this.

Apparently this isn’t completely new news and information has been circulating on the Internet about it for several weeks.

So here’s my question… What’s next? A tax on being short? The bigger question… A tax on being chronically ill?

This whole thing presupposes that there is a real definition of what it means to be “healthy” or “normal”. Plus, as many who are chronically ill know, the pounds can pile on for various reasons (i.e. prednisone) and NOT go away, no matter how much diet or exercise (if you are able given your illness) is involved.

So, what do “y’all” think about this?

What The H*** Happened To Self-Care?

Excuse my affinity for *almost* swearing. But really, this just proves the following:

1. Graduate school and self-care don’t mix

2. Stress and chronic illness don’t mix (if you saw my face, you would think I was back on prednisone)

3. And finally, by this logic, graduate school and chronic illness don’t mix because there is too much stress and not enough self-care involved

So, what to do?

The bigger question is, why is it so darn easy to get back into bad habits?

Can anyone tell me?

I’m not talking about drinking or smoking or anything like that…

I’m talking about the fact that I’m not eating well or sleeping well and anyone who has been following my illness saga knows that not keeping up with these two (very important) things leads me (very quickly) to nowhere but down.

And when I hit bottom, it’s not a pretty picture.

I’ll admit that even before this chronic illness “stuff”, I’ve never been very good at self care in terms of knowing when school/work is too much and when to just let things go.

It’s easy for me to convince myself that I’ll rest later or simply wait until my body just totally shuts down on me. Then I’ll know it’s time to rest.

But clearly, this is not a good plan for anyone involved.

I spent most of this weekend feeling pretty lousy and sleeping. It hasn’t helped that the weather in Michigan has just plain sucked! 50/60-degree temperatures and raining doesn’t a happy arthritic (who also happens to have lupus) make.

I’ve been definitely having some episodes of brain fog and have had a “lupus” headache on and off for about a week. And surprise… the itching is back again! Could I be allergic to rain?

I’ve had more coffee, pop, and “Starbucks lunches” in the past two weeks than I think I have had in my entire life previously. I finally did laundry, though, which I had been avoiding for about three weeks, since I’ve been dreading the six trips up and down the stairs in order to do it. What does that tell you?

I guess the only way really to end this post is to say that it’s a good thing I have an appointment with my rheum coming up at the end of the month. Although while Doctor C can help with the medical stuff, the self-care stuff is all me…

We Might Be Invisible... But We Have Each Other!

Okay, so first let me say that I know how cheesy the title of this post sounds.

But in all reality, this National Invisible Chronic Illness Awareness Week has made me realize the wonderful support system that I have, even if, for the most part, it is a “virtual” one.

I think more than anything, this week has really helped me flesh out who I can truly consider to be a support and whom I cannot. And I think this exercise in self-exploration has been useful in many, many ways.

I’ve started to realize how negativity – people who are rude and outright mean – can really bring a person down (namely, me).

This has been a crazy week, and despite early victories, has probably not come down on my side of the scoreboard. I’m not sure how I feel about this at the moment…

I think I’ve also realized that I am only going to bring to the table/relationships what others bring. I’m really sick and tired of being nice to everyone and being kicked in the butt anyway.

I’m am truly grateful for all of the wonderful people I’ve met during my time so far as a chronic illness blogger. The support, concern, compassion, and commiseration are much appreciated!

Maybe someday I’ll actually get to meet some of you in person (even though you already know what my face looks like)!

So, I hope you all had an introspective National Invisible Chronic Illness Awareness week. For me, it was the first of many to come.

On that note, I want to thank those that have been there for me since I joined this community. It’s funny, I think, or maybe ironic is a better word, that we all joined this community unwillingly, but have really come to embrace each other.

I’m not going to name names because the way things have been going lately, I’ll most likely forget someone, but you know who you are. And it goes without saying that I thank my non-virtual family and friends who have and continue to stand by and support me.

September 11: A Day To Remember (For Several Reasons)

In a weird coincidence (the fact that it’s September 11), today marks a year since my first “official” doctor’s appointment that got me on the road to being diagnosed with lupus and rheumatoid arthritis.

One of the things that I have privately struggled with over the last year is what dates to mark on the calendar. When you have a chronic illness (or a few of them), what dates are important to remember (or for that matter, forget)?

I think for chronically ill people, many of us struggle for so long before we receive a diagnosis that there are many steps along the way. For me, that certainly means that a date I won’t ever be able to forget is April 9, 2008, which is the date when I received the most “official” diagnosis (to date).

But obviously, as this post suggests, this crazy slide into chronic illness began long before some doctor pinned a name on my diseases.

I can remember a year ago, venturing into my first appointment with my new doctor (who I no longer go to), realizing that I actually had a reason to be there. Two weeks into grad school and I suddenly was feeling like an 80-year-old… overnight. Of course, I had been trying to ignore the nagging feeling in my joints and muscles that at first was only after I worked out and had quickly become an everyday, all-the-time occurrence.

Do I mark the date when I had that vertigo episode several years ago, the day when I nearly drowned in the shower – an occurrence that so many played off as nothing for so long? I’ll never forget the date of that because it happened on my parent’s anniversary – July 16.

Do I mark the date when I began (January 9, 2008) and ended (August 8, 2008) my first adventure with prednisone?

Or does any of this matter at all? Some days are good, some days are bad, and when you’re chronically ill, it’s important to mark everyday for the steps and missteps that are bound to happen along the way?

This all sends me in a tailspin, just thinking about it. I fear that eventually there will be far to many dates to write down, keep track of, let alone remember. Just writing this post fills me with emotion that I didn’t expect to feel.

It makes me yearn for the world that was September 10, 2007, just as I did when I was a sophomore in high school, thinking that if only the world could go back to September 10, 2001, everything would be fine. That if history could reverse itself by a single day, the events that devastated lives would never have to happen at all. But obviously, that’s not how the world works. I’m no longer jaded by the naïve thinking that I was when I was a sophomore in high school and the “real” September 11 happened.

And I know that I can’t go back to the way things used to be.

Even Though You’re Invisible, You Still Need To Be Honest With Yourself!

Many of us out there are suffering from invisible illnesses, which, aside from the illnesses, themselves, make our lives more difficult in dealing with others.

I, as many of you know, have and continue to struggle with many of the people around me. I think it is important to remember that even though others refuse to acknowledge or understand your illness or what it means for your life, it is still important for us to acknowledge what our illnesses mean for ourselves.

For me, this has meant over the past week evaluating my priorities and what I absolutely have to do this semester to fulfill the requirements of my education, while at the same time, taking care of me.

The past week has meant reevaluating many of the trajectories I’m on and what kind of person I want to be, which, of course, includes the person that I am with lupus and rheumatoid arthritis.

After attending the first meeting of my second night class, which I love, I have decided that despite the difficulties this is going to bring, I am going to stick with having two night classes in a row – one from 6 to 9 p.m. on Mondays and one from 5 to 8 p.m. on Tuesdays. Plus, I have teaching and all of the various work that goes along with that.

This means, however, that I will most likely be dropping my independent study with my advisor. It’s hard for me to admit that I can’t do everything that I want to do, but that is the reality of my situation.

Now, I am by no means a poster child for listening to myself. But I think the first step in anything is admitting that you know you have things you need to work on. While I will probably, inevitably end up overloading my schedule anyway, at least I have admitted that I know I can’t do everything that I want to do – even when I am being pulled in a thousand different directions and want to make everyone happy and proud of me.

I guess I still have to get over that hump of listening to others and drooling over the lists of things they are doing. It’s hard when there aren’t others around like us and the people that are around, for the most part, completely do not understand. It becomes very easy, even for us, I think, to push our own needs out of the picture. If other people say we don’t matter, then of course, the logical conclusion is that we don’t matter. But this is not true at all!

And I think it’s deceptively simple to say that in the search for understanding, it is always ourselves that have to come to an understanding first, before we can get others to understand, as well. I think it’s really true, though. If I’m not honest with myself about what I can do, I won’t be honest with others, and in the end, I will end up letting both others and myself down in the process.

I want to share the following two stories that have really influenced the writing of this post:

1. While I was busy complaining about the “horrors” of last week, someone reminded me that there will be moments when, surprise!, someone attempts to understand our situation. At my 8 a.m. meeting last Tuesday, I knew that I was going to have to disclose my illnesses to the professor that I’m teaching for. I knew it wouldn’t be fair in the event that I am unable to complete my commitments as a GSI, not to tell the professor what has been going on. While I waited until after the meeting to tell this person, I was provided the perfect opportunity in which to do so. The professor was talking about how issues should be brought up as they arise. Then he mentioned that one of student (a male) last semester was diagnosed with lupus. So, after the meeting had dispersed, I mentioned to the professor that I had to discuss something, and basically started out the conversation with, “It’s funny that you mentioned lupus…”

2. In my last post, I also mentioned the negative experience had in my first class last week, where I really felt put down and disrespected. There is a lot of back-story to the class, professor, etc., and I’ll be happy to share more with those interested, but don’t feel exactly comfortable posting it all here. Anyway, we had a writing assignment due this week, which was to take an introspective look at our research for the class. And boy did I ever. I basically came home and started writing, even before we got the assignment. In so many words or less, I talked about how I was sick of not being taken seriously as a person or a scholar, the challenges I face studying the people that I do, and vaguely about how I had managed to push through, despite my illnesses, and this still wasn’t seen as enough. While I didn’t know how this would be received, I honestly didn’t care. I was feeling hurt and rejected, and the assignment provided the perfect opportunity for me to get what I was feeling off my chest in a way that didn’t seem out of place. And I don’t think I ever would have had the nerve to confront the professor in person about how I had been made to feel.

But at the core of these two situations is that I stuck with my intuition. I trusted myself that these were the right actions to take for the circumstances I was faced with. And in being honest with myself, in turn, I was honest to others, as well. And for what feels like the first time in a long time, I ended up being right, and ended up doing something good for me.

And you know what? That feels great. And I think people are starting to notice me! So in some ways, our invisibility breeds our silence and vice versa. And when we push against that, sometimes, good things actually do come out of it!

Looking The Part, Not Fitting In, And Feeling Invisible (A Pretty Poor Combo, I Agree)

The theme and timing of this post happens to correspond very well with National Invisible Chronic Illness Awareness Week, which is today, Monday, September 8, 2008 through Sunday, September 14, 2008.

Now, this post may not make total sense. It is an explosion of the events, feelings, and emotions of the past week, and for most of that time, I’ve been reeling and trying to come back to earth.

*****

I don’t want to be over dramatic and say that Tuesday, my first day of my second year of graduate school, was the worst day of my life, but suffice it to say that much of what could go wrong in life… did.

I had a twelve-hour day looming in front of me, which I knew was going to be difficult for no other reason than the length of time spent outside of my apartment. But with people making me feel like a failure and rejections of all sorts flying at me from various directions, I pretty much went home and cried. It didn’t help that I had the worst headache that kept me up most of the night Monday and I ate far too little throughout Tuesday.

Tuesday morning, I had an 8 a.m. meeting, only to discover shortly afterward that there was an assignment for my night class due before the class met, that I hadn’t been notified about. So I spent two hours following the meeting feverishly trying to do the assignment. Not a good way to start off the school year, let me tell you.

And I discovered that my locked mailbox was so far above my head that I couldn’t even reach to get the key in. Now before you laugh, understand the fact that this isn’t funny. I went to my second class I was teaching, only to find that I couldn’t see into the window of the room to see if there was a class still there.

I am short in a tall world. I am sick in a healthy world.

And both of these make me virtually invisible.

*****

Thursday was my first day of teaching and I was very nervous about how my students would react to me. After the way Tuesday went, I wasn’t feeling full of wisdom, ready to convince my students that I know how the world works.

And I still don’t feel full of promise and optimism about the year ahead as a student. One of my professors made me feel like a complete slacker. And I didn’t very much appreciate such an untrue insinuation. It reinforced to me the difficulties of having an invisible illness.

One of the first things we were taught at our teacher training was that we should never assume things about a student. And one thing I would never do as a teacher is deliberately call a student out in front of others for their shortcomings.

But this professor didn’t even bother to consider that there might be other things going on in my life that would have caused me to be behind others. Rather, she embarrassed me. And when I tried to vent to others about the experience, they couldn’t commiserate because it hadn’t happened to them.

*****

I do constant battle with whether or not to disclose my illness. You have to remember… I started grad school a year ago illness free. This is the first full school year that I will spend with a diagnosis.

And I’m not sure how to broach the subject. I still can’t get passed the fact that I feel like disclosing seems like a plea for special treatment, which isn’t it at all. But when I’m totally stressed because my life is crazy and people are insensitive, my diseases inevitably flare.

And disclosure is made so difficult because I don’t look sick. But I’m not someone whose disease is under control. My medication is still not regulated and I’m not in “maintenance mode.” At the moment, my illnesses are still completely unpredictable, which makes life as a student, and now as a teacher, extremely difficult.

So, boys and girls, the lesson here is that, at least in academia, disclosure is not easy.

I’m at the point where I feel ready to snap. That at any moment, in the most unlikely of places, I will just scream at the top of my lungs, “I have lupus and rheumatoid arthritis. Chill out and leave me alone!”

*****

Honestly, I feel like I’m drowning. I really am at my wits end that graduate students can only commiserate when something directly happens to them. The teacher doesn’t yell at them, so they can’t possibly understand what it’s like to be made to feel like less of a person. Have they never experienced that at all in life, I wonder?

It’s not even that my “friends” weren’t commiserating with my illness (most of them present in the “professor” situation don’t even know about it). It was that they weren’t even commiserating with me as a graduate student or more broadly, as a person.

The thing that I guess I should have realized a long time ago is that those most hardened to life do not aspire or are not allowed into careers in academia. The “Ivory Tower” is reserved for those who have mainly waltzed through life, unscathed by the less glamorous facets of what it means to be a human being.

On the one hand, I have become thankful that my illness has taught me how to be “universally” compassionate. On the other, I feel like I’m in a glass box, pounding to get out, while the whole world stands around pointing, having no idea what it’s like to be in my box and never bothering to stop and ask me what my life is like.

No one understands that things are twice as difficult for me. After just two days of class, I was asleep on my couch at 6:30 in the evening. I feel like I’m in way over my head here.

*****

On the plus side, my first day of teaching went well. I like my students and am excited about teaching.

My students, at least out loud, didn’t question my ability to be their teacher. I dressed in a dressy skirt and nice top. When I looked at their faces, I saw how nervous they were and it calmed me down.

I was intrigued to see that on their information sheets, several students mentioned having chronic illnesses. Is it sad that I felt instant connection, an urge to reach out to them and tell them that I know what their lives are like?

Although in order to do so would require disclosure, and I’m not sure that would be entirely appropriate.

*****

So much in life is about fitting in and looking the part. And I feel like for me, in some ways, that is the story of my life.

In order to convince my students that I am worthy of teaching them, I have to dress “up.” And I guess in some ways, I’m lucky there is such an easy fix to the situation as clothing.

Because as with my height and my illness, there aren’t such easy fixes to things that will forever be with me.

I might look like I belong in the pediatric ward, but I’m actually old enough to understand what all this illness stuff means for my life. And therefore, I don’t deserve to be treated like a child. Oh, the sick, sick irony of it all.

*****

I’m not sure if I’ll get much more of a chance to blog during National Chronic Invisible Illness Awareness Week (although I think this post is just about long enough to be considered an entire weeks worth of posts anyway). In other words, I might just be invisible everywhere, including on my blog, as well. I’m being daft! You can tell me to shut up anytime!

I have the first meeting of my second night class, the hope that my first night class will go better than last week (because I really can’t imagine the possibility of it going any worse), my first real week of actual teaching, not just introductions and bureaucratic garbage, and the first real test of whether I’m actually up to the challenge of another year of graduate school with a big heaping portion of chronic illness on the side!

Although I’m going to try in my spare time (haha!) to catch at least one or two of the online conferences. And you should too! Here is the link to the conference schedule, from where you should be able to get to the actual conferences.

Just What We Need: Another Warning About Medication

If you are an immuno-suppressed person like I am, you are going to want to check out this article on http://www.healthday.com/. It warns of potentially lethal fungal infections that those of us who are on immunosuppressive drugs are at risk of contracting.

*****

In other news, hopefully I’ll have a real post coming at you soon…

I Now Return To My Regularly Scheduled Life?!?

Well, not exactly. But I’d like to think so. And with the schedule that I have carved out for myself this semester, you would think that I’m trying to achieve super human status. For example, thinking that I can be at two places at once. If only life were that easy, right?

I sent a frantic e-mail to my advisor a few weeks ago saying that I really needed advice, either that or mental help. Or maybe both… I had crammed way too much into an already overflowing schedule, but I couldn’t figure out what to drop. It’s pretty bad when you are shooting for 1000 points and your body is only capable of shooting for 700.

The school year hasn’t even started yet, and already, I’m feeling overwhelmed.

The family vacations, teacher trainings, and weddings are over. It’s back to the grind of taking classes, and for the first time, teaching.

*****

My train, for the fourth time, was two hours late Friday night. Well, guess what? No more Miss Nice Girl. Amtrak is going to be getting a very strongly worded letter from me. I waited longer than the ride actually takes. And it’s really starting to bug me.

It’s frustrating because I end up getting home exhausted, feeling stiff and in pain, and pretty miffed at the ridiculousness of it all. Never in any of these situations has the station offered a refund or any accommodation.

Plus, they seem to have an issue, in general, with helping me. The last time I was on the train, there was a man in a wheelchair who missed his train stop because none of the train personnel remembered that he needed to get off at that stop. And there wasn’t really anywhere he could go without aid. The best they could do for him after they realized the mistake, was offer him a phone to call the person picking him up, to inform them that they should pick him up at the next station, nearly 20 miles away.

This time, I ended up talking to a woman who was blind, who told me that she had missed a stop because there was no one there to get her bag for her and help her off the train.

This is ridiculous, if you ask me, and just plain wrong. I don’t really know what else to say about it, but I think people need to be aware of such things.

*****

My cousin’s wedding was beautiful. But I realized that unless it’s your wedding or you are a member of the bridal party, weddings are kind of overrated. It also made me wonder… How many people in my extended family know about my illness and didn’t say anything? How many don’t know? And how many just plain don’t care?

This morning, I woke up with a monster headache. I hadn’t bothered to set my alarm. When I’m alone in my apartment, I am hyper-vigilant about getting up at the time I supposed to, to take my meds. But at my parent’s house, the weekend before the start of school, I just didn’t feel like it. So, I slept in. But I couldn’t beat the system.

The thing that I’ve realized over the past week is that I haven’t learned to put my illness first. While I don’t want my illness to be life consuming, I also have to realize that decisions regarding my health have to come before just about all others.

Before I left for home on Friday, I had piles of stuff everywhere – piles of papers from training, piles to pack to take home with me, piles and piles of junk. And my first instinct was to get rid of it all. Even before school, I’ve become consumed with work and logistical issues, both illness and non-illness related. I’m trying to balance the e-mail flow from three separate addresses.

A large part of managing chronic illness is about simplifying your life. Clearly I have failed in this regard.

I’ll admit to the fact that I am a micro manager. Sometimes it is hard for me to look at the bigger picture. I get stuck on tiny details that seem way more important than in reality they are.

And as much as I would like to say that this is all going to be great and wonderful - school, teaching, all of it… I can’t. I have no idea how it is going to be teaching and balancing all of the responsibilities that go along with it with my own classes and everything else.

Well, I should probably unpack and get ready for bed. I have to be at an 8 a.m. meeting. Plus tomorrow I have a class from 5 p.m. to 8 p.m. On Mondays, I have class from 6 p.m. to 9 p.m. I’m not sure how those night classes are going to go.

But so begins the adventure…