Tuesday, June 23, 2009

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.

Wednesday, June 17, 2009

“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.

Sunday, June 14, 2009

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 na├»ve, 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.


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!

Thursday, June 11, 2009

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!

Friday, June 5, 2009

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:


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.


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.


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…)

Tuesday, June 2, 2009

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.