Unearthing The Past As A Key To Unlocking The Future

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

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

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

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

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

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

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

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

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

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

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

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

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

“Patients For A Moment”

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

Reality Sets In And The Odds Are Overwhelming

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

Lab Work

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

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

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

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

Medication

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

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

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

Support Group

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

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

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

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

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

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

*****

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

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

*****

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

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

“Won’t you take me to Funkytown?”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Continuum Of Disclosure

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why?

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

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

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

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

Observe:

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

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

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

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

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

Grand Rounds Is Up At HealthBlawg

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

Seems to be the story of my life these days…

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

Illness As The Ultimate Trump Card

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

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

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

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

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

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

*****

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

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

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

*****

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

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

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

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

*****

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

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

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

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

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

“It Does Not Say Lupus On My CV”

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

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

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

The Need To Disengage

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Learning To Stand On My Own

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

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

Cause I’ve seen the dark side too.

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

Nothing you confess could make me love you less

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

I’ll stand by you.

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

Come on and talk to me now.

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

But I’m a lot like you.

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

Let me come along, cause even if your wrong

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

- “I’ll Stand By You,” The Pretenders

*****

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

I will comfort you, I will take your hand

And I’ll pull you through, I will understand

And you know that

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

Together we’ll survive through the haste and hurry

I’ll be at your side

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

I’ll be at your side”

- “I’ll Be At Your Side,” The Corrs

*****

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

*****

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

The Struggle For Recognition

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

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

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

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

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

*****

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

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

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

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

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

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

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

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

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

*****

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

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

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

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

“Butterfly Girl”

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

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

“Butterfly Girl” by Jaylene Johnson:

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

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

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

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

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

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

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

From the album, “Finding Beautiful”

“The ‘L’ Word”

As much as I hate it and it pisses me off sometimes, sometimes lupus can be useful.

For instance, when I am wigging out because of a failed relationship that my parents don’t know about, it’s just the lupus flaring.

When I’m feeling too emotionally drained to get off the couch because I feel like I’ve failed at life and I don’t want to go out, I tell my friends it’s just the lupus flaring.

When I’ve taken on too many commitments and am exhausted and in pain, it’s just the lupus flaring.

And most of the time it’s true, the lupus is flaring.

But when I meet a guy who seems interested in me, I have to wonder, how long do I wait before I drop the bomb?

Bones, joints, and muscles ache like I’m eighty years old. That’s a real turn on, huh?

Sometimes I get nauseous and dizzy for no reason at all. And my mind goes blank and I can’t even remember your name. That’s a real turn on, isn’t it? A girl who can’t even remember your name…

So before we can talk about to LOVE, let’s talk about LUPUS…

Deny, Deny, Deny

“Sometimes reality has a way of sneaking up and biting us in the ass. And when the dam bursts, all you can do is swim. The world of pretend is a cage, not a cocoon. We can only lie to ourselves for so long. We are tired, we are scared, denying it doesn’t change the truth. Sooner or later we have to put aside our denial and face the world. Head on, guns blazing. De Nile. It’s not just a river in Egypt, it’s a freakin’ ocean. So how do you keep from drowning in it?”

- Meredith Grey, “Grey’s Anatomy”

*****

“Look into the depths of your own soul and learn first to know yourself, then you will understand why this illness was bound to come upon you…”

- Freud

*****

“[…] It’s hard to see the pain behind the mask

Bearing the burden of a secret storm

Sometimes she wishes she was never born

Through the wind and the rain she stands hard as a stone

In a world that she can’t rise above […]”

- “Concrete Angel”, Martina McBride

Friday was the first anniversary of my blog. For the weeks leading up to it, I was really planning to make a big deal about it; about how much has happened over the past year and how far I’ve come.

But the truth is, I haven’t come that far at all…

Yes, I’ve become a pro at telling people that I have lupus and rheumatoid arthritis. What I haven’t become good at, however, is accepting my limitations. Well, I think I’ve come to accept them for the most part, but I haven’t gotten over the fact that I need to tell the people around me about them.

It’s really hard for me to admit this. In many ways, I thought I was coming to terms with illness. I thought I was beginning to grow into this body, starting to feel comfortable in this skin.

But it has come to my attention that my filling this semester with loads of stuff has been for one reason and one reason only: to act like I’m not sick. This attempt has, however, been an abject failure. Why? Because regardless of what I was trying to prove to myself and/or others, I ended up last on the list yet again.

I tried to take comfort in things that I assumed would take away the emotional, and maybe even some of the physical pain. But the truth is, all these things did was cause more pain than was already there.

And then my body fought back and put me in the most pain that I’ve been in, in a long time. It was only then that I realized what the problem was. I am sick. And I can’t continue to live my life as if I’m not…

Would I like to think that there is some cosmic occurrence behind all of this? Sure, but honestly, I’m not sure what I believe anymore.

I used to believe that modern medicine was truly amazing. But it just goes to show that when you end up with all of the symptoms at one time that modern medicine has learned to treat, it is powerless against them. I mean, I’m taking medications just to counteract the side effects of other medications.

The truth is that there is very little beauty to this experience, no real deeper meaning or truth. There is no hope that one day life will go back to normal. Maybe there never was a normal. Maybe there was only a time when life didn’t suck this much.

Because even today, I think there is a part of me that hopes one day I’ll wake up and be pain and symptom free. Not just for a day, though. I’ll wake up and the world will feel different because I won’t be sick anymore.

I get scared because there are days when I’m so down that I think I might just throw in the towel. Because if this is how I feel now, how am I going to be able to deal with this forever?

Anger is a funny thing. It is a dark beast that hides in the pit of my stomach and rears its ugly head at unexpected times, and in unexpected places. It is like lava rising up in a volcano and it relentlessly destroys everything in its path. It is especially dangerous when it is directed at nothing and no one in particular.

I do desire to be happy, I truly do. But right now I’ve hit a wall, and I’ve dug myself into a hole that’s too deep to get myself out of on my own. In some ways, I feel like no one is listening, like I’m trapped in a glass box that’s filling up with smoke, and I’m pounding on the walls, but no one hears.

Because the truth is, if I wasn’t having a hard time facing the reality of my illnesses, I would never consider not taking my medication, I would never have skipped out on my quarterly blood work to make sure the Cellcept isn’t killing me, and I would never even give thought to how many times I’ve stared down my medication bottles, thinking how easy it would be to swallow them all down and never have to deal with any of this ever again…

I’m trying to stop the cycle of self-blame and self-loathing. I’m trying to remind myself that we do not choose our illnesses, rather, our illnesses choose us. And I’d like to think that somewhere there exists a reason for all of this. But I’m tired of fighting with myself, with my body, and with everyone around me. I’m scared that no one’s ever going to love me, really love me, illnesses and all. But most of all, I’m scared that I’m never going to feel whole again…

Emotionally Unavailable

“[…] Have no fear for giving in

Have no fear for giving over

You’d better know that in the end

It’s better to say too much

Than never say what you need to say again […]”

- “Say”, John Mayer

I’ve come to realize recently that I’m a magnet for emotionally unavailable people (namely men), not just in romantic relationships, but also in many of the other relationships in my life.

I think this is funny because in some ways, finding the right man is like finding the right doctor (see this CNN article about finding Dr. Right). And I’ve clearly failed at both, so there you go…

I was recently talking to someone who told me the story of when they were diagnosed with their illnesses. About how the doctor sat them down and basically said this is what’s going on and here’s what we’re going to do to make it better. This person seemed very comforted by this whole ordeal, as if it had to happen at all, that’s the way it should have gone…

I remember thinking, oh yeah, that’s how I thought it would be for me, too…

I think we all have this picture in our minds of what that moment would be like, of being told that your life is over, or at the very least, forever changed. It’s a scene we’ve seen thousands of times on TV.

But that’s why I always say my “official” diagnosis, because I don’t really feel like I ever got the diagnosis directly. I mean, sure, my doctor sat down with me, but I don’t get the sense that he really thought about what he was saying, that he really understood the magnitude of the situation for me and my life. That what for him was just a diagnostic code, for me, became my life. And I feel like the words have never been said in the same sentence. There is a distance between the weight of the situation and reality. And it’s something I find difficult to reconcile.

I remember the feeling of leaving the office that day and knowing that my world had changed forever in a million imperceptible ways that only I was aware of. And maybe even in ways that I still have yet to fathom…

I remember thinking how much better this year would be. Having a diagnosis made me feel powerful, in control, until I realized that there’s so much that I don’t have control over…

I’ll admit, I’m a very emotionally open and expressive person. But it seems to me that for some people, there is an unhealthy level of detachment. I’ve begun to wonder what my life would look like if it was the other way around, if I was the one who was completely emotionally closed off and unavailable, if I wore a poker face all the time. What if I became emotionally numb?

In reality, I know that will never happen because I’m not that type of person. I can’t detach my head from my heart or my heart from my head. And I guess given that, I will just have to accept the fact that people are going to hurt me.

It took me a long time to dissociate my rheum with the fact that he was the one who diagnosed me. I saw him as the executioner of my life, the killer of dreams and the murderer of my youth (okay, I’ll admit that’s a little overdramatic, but you get the point, don’t you?). I mean, seriously, how do you like someone who only gives you bad news? Maybe that’s because my first doctor had convinced me that I absolutely did not have lupus. And I was more than happy to rule that out… until I found out that I did…I harbored anger at my rheum for a long time, as if he really had the power to change the course of events.

It’s a bad sign, though, when you start to cry or show any type of emotion, and your doctor returns the “deer in the headlights” look you had given him several months earlier when he was rapidly firing questions at you to try and get a clear picture of your medical history.

Because comforting a patient he’s just dropped a bomb on is simply not in his job description.

Just like the guy who says he’ll never hurt you and then leaves you high and dry, alone and more miserable than you were before, and he can’t recall doing anything wrong…

I get it… I completely understand…

For some people, the capacity to feel other things for people other than themselves is just not possible.

“Frankly, My Dear, I Don’t Give A Damn”

It is a rare occasion that I air my feelings about comments left on my blog publicly. But in the haste and hurry of Grand Rounds, the following really got my blood boiling. The comment was left on my post, “Unnecessary Complications”*:

No problem...you are over extended and a little burned out. Don’t make major decisions like dropping out of school just yet. Make a list of everything you are doing. Include everything and prioritize the list. Make sure you put rest and relaxation on that list too. It should become obvious that there are some things that are not priorities that you can drop. Do you really need to speak at a conference or lead that arthritis walk? Learn to say “No”. I know it is hard when everything seems important but taking time to just “be” will energize you for the important things you want to get done. Good luck.

Okay, so I think it’s safe to say that everyone, including me, has established the fact that I have taken on too much!

(Gosh, I really hope this person isn’t a brain surgeon…)

But where does this healthy person get off telling me what should and should not be my priority? Because as a matter of fact, I see the DePaul conference and the arthritis walk as important steps for me in coming to terms with my illnesses.

Need I remind you that I was diagnosed only a year ago? I’m still at the beginning stages of this coping business…

I guess when hosting Grand Rounds, you run the risk of people unnecessarily thinking it’s okay for them to offer an opinion on a situation that they know absolutely nothing about.

This person makes it sound as if the situation is simple and clear-cut, as if I could simply “empty my plate” and all my problems would be solved. But it’s not easy, as all of these commitments I have made are integral parts of my identity, of who I am as a person, and without them, I don’t know what to do with myself.

I don’t get the sense that this person understands what it’s like to be in an academically stringent graduate program while chronically ill. And they don’t understand what it’s like to be in an environment where your priorities are different from everyone else’s. The day in and day out sludge of graduate school is hard enough on its own, add illness to the mix, and you’ve got a giant barrel of fun.

I don’t think this person was trying to be hurtful, but they weren’t being helpful, either. Everyone is absolutely entitled to his or her opinion and I don’t expect readers to agree with me all the time. But if you are going to give your “two cents,” it should either be because you know what I am going through, or you’ve been to my blog more than once.

To me, this brings up an issue that exists for those who are chronically ill, and it pretty much exists for everyone, which is that sometimes, well-intentioned opinions and advice just suck. Period. Full stop.

I know I’ve read that people have said horrendous things to other bloggers, like that they are lazy or should believe in god more, and shit like that. But regardless of what is said, the ignorance is palpable, and quite honestly, infuriating.

This is also about taking a stand, and sticking up for myself when people say things that they shouldn’t, like when someone tells me Oh, I have a friend who has lupus and she’s perfectly healthy. Usually I just shrug my shoulders a give a sheepish grin.

I know, I’m sure this person was just trying to be helpful, as well, but do they realize that it doesn’t come off that way at all? To me it sounds like victim blaming. Like not all lupus patients are as sick as you are, so what’s your problem?

Honestly, it’s people like this that make being sick difficult. It’s not about the fact that I don’t have my priorities straight. It’s about the fact that I have to mourn the loss of the life I will never be able to lead (that I’m desperately trying to hold onto), the one that I spent nearly 22 years building for myself. I have to come to terms with the fact that those who I have met since I got sick, or those that I have yet to meet, will only know me and my life with these illnesses. That’s something I find very troubling. And that’s something that healthy people can’t possibly understand until they’ve lived it.

This doesn’t mean that the life I was leading before was healthful, and it’s even less so now. But that also doesn’t mean that I can wake up tomorrow, and poof, that other life no longer exists and I’m totally fine with that.

I’m really tired of dealing with ignorance and stupidity peaceably (read: by not saying anything at all). While these kinds of comments obviously do hurt on the inside, on the outside I would like it to appear that I don’t care. But of course, I do…

So before you offer advice that has no bearing on my life or anyone else’s, maybe you should think about what it would be like to walk a mile in my shoes, hell, even a block in my shoes, before you pass judgment on how I live my life.

It’s called tact, people. If you don’t have any, maybe you should consider getting some! (And maybe ask for a side of compassion and empathy while you’re at it…)

* The comment referred to has since been taken down. This post wasn’t meant to call this person out, in particular, but rather, to point to a larger problem that exists in the gulf between healthy and sick people. And I’m getting kind of “sick” of it…

Grand Rounds Vol. 5 No. 29

“Lucy: Do you think anybody ever really changes?

Linus: I’ve changed a lot in the last year.

Lucy: I mean for the better.”

- Charles Schulz**

As I suggested in the call for submissions, the theme for this week’s Grand Rounds was loosely reflections on the way life used to be. For me, this theme was prompted by the fact that I have been a patient blogger for almost a year now, was diagnosed with lupus and rheumatoid arthritis almost a year ago to the day, and am finishing my second year of graduate school in a few weeks.

When I think about the way life used to be, I automatically think about change, and the myriad ways in which my life has changed over the past few years. Based on all of the submissions I received, this theme seemed to strike a chord.

Here is what medical bloggers (you!) had to say… Happy reading!

(Posts with a “*” were my personal favorites. They made me laugh and/or cry, and/or fit really well with the theme…)

*****

Out With The Old…

Learning To Accept The Unexpected

These bloggers suggest various ways of coping that all involve a little bit of “old-fashioned” acceptance for the things we cannot change…

* Marie, of the blog Nourish, poignantly reflects on what her life was like “Before and After” being diagnosed with multiple sclerosis.

How To Cope With Pain gives us the post, A Journey From Being Lost To Acceptance, which looks at the stages people go through when facing obstacles, and provides suggestions for moving towards the acceptance of life challenges, specifically for those dealing with chronic pain.

Amy at Diabetes Mine adds a little humor to the situation in Diabetes April Fools, where she asks patients to submit their stories and laugh in the face of chronic illness, proving that sometimes, laughter is the best medicine…

Maybe The Old Ways Aren’t The Best…

These bloggers explore how the old ways of operating around a variety of medical issues just aren’t working the way they should…

* The Samurai Radiologist over at Not Totally Rad warns (in a somewhat comical way) that powerful and dangerous bacteria can grow on stethoscopes and that like radiologists, who don’t carry them, other physicians should “Just Say No To Stethoscopes” in order to protect patients.

Walter at Highlight HEALTH questions the health benefits of the traditional “meat and potatoes” diet in the post “Meat Consumption And Mortality Risk,” which explores research showing that a diet high in red and/or processed meat isn’t necessarily good for you, and can actually increase your risk of death.

Jeffrey from Nuts For Healthcare addresses the impact that the country’s economic crisis is having on the government and private insurance industry, suggesting that the old ways of operating aren’t working, in the post “striking middle ground in a public health plan?”

Reality Rounds looks at what the job description of a nurse was in 1887, in the post “We’ve Come A Long Way, Baby”.

In the post “Mr. Bush, Mr. Obama, and the Amish Bus Driver”, Dr. Rich at The Covert Rationing Blog looks at the issue of medical professionals refusing to conduct certain medical procedures because of their own personal beliefs. Assuaging to collective rather than individual interests, Dr. Rich argues that the “traditional” doctor-patient relationship has become obsolete.

Am Ang Zhang, The Cockroach Catcher, laments the current state of the medical profession, in favor of a more paternalistic approach, in the post “House M.D.: 95% vs 5%”.

The More Things Change… The More They Stay The Same

* Maria, from My Life Works Today!, talks about the songs that have impacted her life and continue to comfort her on her journey of living life with lupus in the post “Music, Mileage, and Memories”.

* Laurie from A Chronic Dose feels fragmented. In her post, she laments the difficulties of balancing daily life and illness that occur, even when one has dealt with being ill for a long time.

In the post “Is Marriage Good or Bad for Your health?” Barbara from In Sickness and In Health suggests that while life with illness is about uncertainty, so was life before (or even without) illness, and that all situations can be complex and contradictory. She writes about one of them…marriage.

David from the Health Business Blog provides part one of a podcast of an interview with Bob Stone, the co-founder of Healthways, a disease management company founded in 1981. The podcast explores the reasoning behind why there hasn’t been widespread healthcare reform in the United States. You can listen to the interview here.

* Barbara from Florence dot com gives us the story of a Swedish ship that sank several hundred years ago. She connects this story with the epidemic of adverse events in medical practice occurring today, suggesting that like the ship, there is no regulatory mechanism in place to prevent such events, in the post “Lessons from a Sunken Ship”.

* In a post entitled “A Sordid Experience,” Dr. Cheah, a physician in Malaysia, paints a shocking picture of the conditions in local medical wards.

Everything Health vents about conservatives challenging healthcare reform that hasn’t even happened yet, in the post “Foxy Richard Scott Wants to Protect Us”.

Inside Surgery looks at the Carla Nash case and explains the general treatment strategies that are used in all critical medical cases.

In With The New…

Snake Oil And Other Fancy Things

These bloggers talk about change, and new and different experiences, some which are good, and some which aren’t…

* Kerri from Six Until Me writes about the kindness and compassion of a stranger who bails her out of a very tricky diabetes situation in her post, “Employee of the Month”.

Buyer beware! If it sounds too good to be true, it probably is… It’s sad but true, Paper Mask warns us against fraudulent health scams.

Duncan Cross expresses frustration over the public relations campaign of the pharmaceutical lobbying group PhRMA, in his post “Sharing Miracles?”

Other Things Amanzi provides us with a sardonic (and admittedly bizarre) tale, suggesting that no matter what, “all bleeding stops”… eventually…

Nancy at Teen Health 411 emphasizes the importance and ritual of food preparation in her post on “The Culture of Food”.

Paul from Medicine for the Outdoors examines new research that suggests “changes in leisure time physical activity,” specifically spending more time being active, significantly reduces mortality risk. Now that it’s (finally) spring, what are you waiting for? Head outside!

Thought exercising was good for you, right? Well, it can be unhealthy if done the incorrect way. The Fitness Fixer provides tips on how to use fitness equipment the healthy way in order to avoid injury and pain.

Louise from Colorado Health Insurance Insider talks about the potential benefits of a program offering “free health care for some laid off workers”.

Allergy Notes informs readers that “mold and mothers smoking during infancy are the strongest risk factors for pediatric asthma”.

Technology: Friend Or Foe?

These days, you’d be hard-pressed to talk about change without looking at the way technology has revolutionized our lives. In an age when you can be-“friend” your doctor or patient at the click of the button, one has to wonder when it all becomes too much…

* Adina at Heal Spiel gives us the post, “Should Medical Students Make Fools of Themselves on the Internet?”, which looks at the potential positive impact that broadcasting their lives on social networking sites, such as Facebook, can have on medical students.

Dr. Shock investigates the pros and cons, and the various ways in which hospitals are using “social media”, such as twitter, in a post entitled “Twitter, Doctors, Hospitals and Medical Education.”

Clinical Cases and Images explores the reasons why electronic medical records may not be that helpful when medical professionals use a “copy and paste” method.

* On the flipside, in Getting Away From It All, Nurse Ausmed at Nursing Handover explores what it would be like for a medical professional to go to a developing country and practice medicine without the technology one is accustomed to using.

*****

Don’t miss an edition of Grand Rounds ever again! You can subscribe to the Grand Rounds RSS feed or an aggregated RSS feed that includes Grand Rounds, Change of Shift, and Surge Xperiences.

Thanks to all who submitted posts for this week (and everyone’s encouragement in hosting my first Grand Rounds)!!!

Next week’s edition of Grand Rounds will be hosted by Pharmamotion.
*****
**(Schulz, Charles. “2,522.” The 2,548 Best Things Anybody Ever Said. Comp. Robert Byrne. New York: Fireside, 2002.)

"Grand Rounds" Is Here Next Week!!!

I’m hosting Grand Rounds next week. This is my first time hosting and I’m really excited about it. The theme is loosely reflections on the way life used to be. My blog turns one in a few weeks and I’m about to complete my second year of graduate school. Plus it’s spring, always a good time to come out of hibernation and reflect…

I’m feeling kind of nostalgic for the “old” days, when a medication schedule didn’t rule my life, but I’m also feeling empowered by the fact that now I’m living my life with illness, and my illnesses aren’t dictating my life (for the moment).

So whether you’re a doctor, patient, or an all-around medical aficionado, please submit posts to gettingclosertomyself@gmail.com by 11 p.m. on Sunday, April 5. Make sure you put Grand Rounds in the subject line, and include your name and a link to the post in your e-mail.

Town Hall Speech

What follows is a speech I gave tonight at a town hall meeting about disability and access put on by the Graduate Employees Organization (GEO) Disability Access Committee, of which I am a member. As I indicate in the speech, this was the first time I have spoken to a group publicly about my illnesses…

I graduated from the University of Michigan in April of 2007 and was set to start the Sociology PhD program in the fall. While I thought that there was nothing to possibly derail this plan, I was very wrong. Throughout my senior year of undergrad, I had repeated strept throat and pink eye infections, bizarre stomach bugs, and the telltale muscle and joint pain – at first only after I worked out – then eventually, the pain never went away.

While I was able to start graduate school in the fall of 2007, my whole world quickly fell apart. I was in pain all the time and had unexplainable symptoms that would come and go in the blink of an eye. I had to go to several different doctors before I was able to find someone who took my concerns seriously…

In April of 2008, I was diagnosed with lupus and rheumatoid arthritis. While I struggled with frequent doctors appointments and medical tests, and not feeling well, I also struggled with what these illnesses would mean for my graduate school career, and more broadly, my life. Simply asking my department for symbolic recognition of the situation and its varied consequences was met with resistance and unease. I felt like I was met with the implicit charge that:

If I couldn’t cut it for any reason, I shouldn’t be here…

This journey has been fraught with failed attempts and missteps. The tangible changes, in many ways, remain to be seen. I know that my situation is unique in that it started while I was in graduate school and that I have a set of very unpredictable illnesses. But should you become a player in this game, or if you are already in it, you probably know, that it is not for the faint of heart.

Still, as I’m sure there are many others out there, as well, I mostly suffer in silence. As my cohort mates celebrated the end of our first year of graduate school last April, I was at the hospital receiving outpatient intravenous therapy. A stark contrast to the 22-year-old, graduate student life I thought I’d be living. It is only a recent innovation that I don’t rush to the bathroom to take my medication five times per day so that no one has to watch me pop pills and wonder why.

There is no doubt that illness is a lonely pursuit. It is isolating. It is a litmus test for friendship. And most of all, it is exhausting to wear the brave face all the time and have everyone around you be none the wiser. This is especially frustrating that when you do ask for help, you are met with ambivalence, and sometimes, downright nastiness.

It is ironic that those of us who are sick and tired, who are the most vulnerable, are expected to lead this fight on our own. As sociologist C. Wright Mills wrote in 1959:

Men do not usually define the troubles they endure in terms of historical change and institutional contradiction [...] They do not possess the quality of mind essential to grasp the interplay of man and society, of biography and history, of self and world. They cannot cope with their personal troubles in such ways as to control the structural trans-formations that usually lie behind them.

The truth of this matter hinges on Mills’ words. This personal problem, of illness and disability, is in fact, very much a public issue – even for those of us with invisible illnesses and disabilities. And until it is seen as such, the individuals that sit before you tonight will daily have to battle in order to gain the recognition and help they deserve.

*****

As I expressed earlier, while individual action and change are important, the difficulties incurred by Katie, Walt, and I point to much more deeply imbedded, systemic issues, issues that will not be surmounted by individuals alone.

There are many matters that still need to be resolved. People are often hesitant to attach labels to themselves or to be open about such issues. While I have become adept at talking about my illnesses, this is, in fact, the first time I am publicly disclosing them in a forum such as this.

At the heart of the matter, is often that people do not stand up for issues that do not directly involve them. As journalist Richard M. Cohen wrote in Strong at the Broken Places: “Know this. Ninety million Americans battle chronic illnesses everyday. Welcome to your future.”

While this statement may sound harsh and threatening, it is the truth. Although chronic illness and disability may not be on your radar screen today, they may be your reality tomorrow. That was the case for me. While disability issues were in the back of my mind, I never expected them to become “my” issue. But now that they are, I hope that with the help of others, something good can come from my experience.

What is truly needed, then, is a network of students who are disabled, chronically ill, or are aware of the importance of such issues, not only to those who are directly affected, but to the University community as a whole. We all deserve a living, learning, and working environment where we feel accepted and appreciated, and where our voices are heard, not because we are alone, screaming at the top of our lungs, but because there is a chorus of voices harmonizing together.