Invictus

Even as I write this, I am sitting on an airplane. Sometimes the urge to write overwhelms me, and I just cant resist. So here I am, blogging away on an airplane when I should be resting. (I’ll date this entry by whenever I post it, which might be a few days out as I’m unsure about my internet connection for the next few days.)

Anyway, let me get to the point. I just finished the movie “Invictus,” starring Morgan Freeman and Matt Damon, directed by Clint Eastwood. Now, as far as I’m concerned, you would REALLY have to screw up a movie for it to not be worth watching with those two cast in the leading roles. True to form, I was awed. Bedazzled. Amazed. (wait, are those synonyms?) The story is about how newly elected president, Nelson Mandela, united with the captain of the South African rugby team to use rugby to unify the country (and win the rugby World Cup). The movie was fantastic. You learn about Mandela and his philosophy, you learn about what South Africa was like when he became president, and you watch how rugby brought them together. Of course, that was by no means the end of the struggle, but tell me you didn’t tear up a little as you watched some Afrikaaner police officers go from suspiciously eying a skinny black boy to watching them hug the kid and cheer, and I’ll strongly suspect that you’re lying. If you haven’t seen the movie, definitely get on it immediately. WAIT – I meant AFTER you finish reading this post, goodness!

I am generally a fan of the heart-warming, sports underdogs beat the odds type of movie. I’m especially fond of the ones that talk about underlying social issues like “Glory Road” did.  Still, heart-warming is supposed to be theoretical, but I find that there are certain books and movies that actually manage to warm my heart. I’m sitting here feeling like my soul is glowing or something. Now, HIV debacle aside (the redemption for which I believe he has worked hard to achieve), Nelson Mandela is very, very high on my list of heroes. I had the honor of hearing him speak a couple months ago. Believe me, he has every bit of the presence you think he will. So that is probably part of why I’m feeling so inspired right now, but it isn’t the only reason.

As I watched the movie, I started thinking about heroes. It’s such a common question that we ask. Even little kids have a hero, be it superman, their mothers/fathers or a favorite sport celebrity. Still, I think we often forget that heroes don’t have to be famous. Don’t get me wrong Mandela is definitely one of my heroes, but I think we meet a lot of heroes in our every day lives that generally go unacknowledged. The parent that devotes her time to coaching her kid’s baseball team... The man who gives up his holidays to celebrate with people who don’t have families at the homeless shelters and soup kitchens... The people who devote their lives to the betterment of others – in hospitals, in schools, in neighborhoods... They are all heroes, and so is every person fighting a chronic illness. They are inspirations to everyone else fighting similar battles every day. This is hardly a new sentiment. In fact, I think if you watch the Twitter updates of the chronic disease community, you will see at least one post stating the same thing every few hours or so at the very least.

Now, dear readers, I’m sure you are very anxious for me to wrap up this post so I can free you to search for this movie. So let me get to my point. It’s a pretty interesting circle if you think about it. You tell persons A, B, and C that they are heroes because they find the strength to fight these illnesses. Meanwhile, persons A, B, and C turn around and tell you the same thing, but you don’t really believe them. So why can’t we acknowledge that we are heroes too? Why must hero-worship always be an outward love? You are your own temple, right? Ok, so maybe the problem is that it sounds a little self-centered. How can I sit around thinking about what a big hero I am? After all, if a kid answered “Who’s your hero?” with “I am!” they would probably be subject to a lesson on what a hero is followed by a reiteration of the question until they reported a more “appropriate” answer. But I think it’s a truth worth acknowledging. It’s not enough to help other people get through their days by reminding them how amazing they are. We must also help ourselves by acknowledging that if they are heroes for what they go through then logic dictates that we are heroes too. Everyone is interconnected, one can’t rise up without the other. In order to help me fight my battle, you must be strong enough to fight yours first. (I’m reminded of the airline safety videos: Please put on your own mask before assisting others!) So the next time you are raising someone’s self esteem with compliments like these, take a moment to remind yourself: you are a hero too.

Sunday Breakfast Club – Happiness is Taking Things as They Are

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

(image from Tumblr.com)

I wish I could remember where I came across this picture the first time. I saw it somewhere approximately a week ago and over the course of the week it got under my skin. It’s become my theme of the moment, a thought that gets me through the day.

There are things that I can’t change. I can’t change my diagnosis. I can’t change its symptoms or the side effects of its treatments. When I say side effects, I mean all the side effects not just the medical side effects like weight gain. I mean the life side effects too. The results of hours and hours spent in bed: the effects on my grades and my relationships. Hobbies I can no longer really engage in. Experiences I don’t know if/when I’ll ever be able to enjoy again – hikes and so on.

I realized that if I spend all my time wishing things were different, I’d never really be happy. There are a million things that I wish I could change but can’t. Of course, this shift in mindset doesn’t change in a day. So I set the picture on my desktop and phone backgrounds as a constant reminder.

On the flip side, is choosing to just accept these symptoms akin to giving up on fighting them? Maybe railing against the disease’s suppressive effects is a psychological boost that helps my body fight this monstrosity. (see related post)

Thoughts? 

Pain is a Funny Thing

Pain is a funny thing. It pervades our daily existence more than we might realize. We talk about physical aches and pains like headaches, stubbed toes, and paper cuts. We talk about the emotional pain that comes from unhappy life circumstances. Countless poems, plays, screenplays and books have been written about emotional pain related to love in particular. Make a trip to the self-help section of a bookstore looking for books about having a happy (read: painless or at least pain-minimized) emotional existence and you’re unlikely to come out empty-handed. Society is obsessed with dealing with emotional pain, because most humans understand these types of pain. We know what it feels like and we don’t like it one bit. Chronic pain is whole ‘nother ball game, but we’ll get back to that in a minute.

Overall we consider it a bad thing, right? If you hear someone is eliciting self-inflicted pain, the societally-programmed impulse is to worry – and to judge. We have medical specialities that specifically deal with minimizing pain. But pain has an incredibly important evolutionary role. Pain helps us to learn – especially as children – which things are dangerous and should therefore be avoided. The fact is, while we may all experience pain, science doesn’t really understand it. Sure, we can talk about certain types of nerve fibers and which parts of the brain are active when we’re in pain. From an emotional perspective we have psychology versus psychiatry – and, of course, all different camps of different theories within them.

Still, we know it’s important. Many medical professionals consider it one of the vital signs that should be collected from each patient. I once heard two professors debate whether the pain scale should be 0-10 or 1-10. On mics. In front of the class. (The argument being that doesn’t a score of 1 imply that you have some pain? So people with no pain should be able to rate their pain at 0.) And, yet, how can we understand what other people are going through when different people perceive the same pain-causing stimulus to cause different levels of pain? An 8 on the pain scale for me might be a 4 on the pain scale for you. We all perceive it differently, and then we deal with it differently too. And both perceptions and coping abilities adapt when we keep dealing with pain over and over. There’s no magical formula for it. What works for me probably won’t work for you and vice versa. But I think the key to learning to deal with the pain is to understand that while everyone might not be able to understand what it’s like to be in pain all the time, pain really does pervade our existence. We can’t escape it any more than we can escape ourselves.

So where, in all of this, does chronic pain fit in? Well, chronic pain - perhaps because of its inherent chronic nature – is both physical and emotional. To put up with chronic pain for so long is stressful on the mind. It’s a daily frustration, and most of the time people don’t even realize that you’re in pain. Even if they do realize that you’re in pain, they really can’t fathom what it’s like to always be in pain. Without that perception, they can’t gain full understanding.

So, to recap... First we deal with the constant physical pain. Then we deal with the emotional pain that it causes. Then we deal with the fact that nobody gets it. (Relax, I’ll spare you the what doesn’t kill you makes you stronger speech.) I think what it comes down to is realizing that pain has a purpose. How much pain my joints are in often tells me when I’m heading into a flare up or that I’ve been overdoing it lately. We can resent it all we want, but in a chronic illness it does occasionally have it’s moments of usefulness. Still, in learning to live with the pain, I think it’s the emotional pain that is hardest to deal with. But deal with it we must, because otherwise how would we have the emotional strength to deal with the physical pain?

Nevertheless, chronic pain doesn’t fit into any of those points, does it? It’s not serving an evolutionary purpose, it’s not a warning signal about health status, it’s not anything really useful at all. It’s just, well, PAINFUL.

Sunday Breakfast Club: Grey’s Anatomy, S6E21, “How Insensitive”

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

Grey’s Anatomy has been a favorite guilty pleasure of mine since the show first aired, but lately I’ve been getting more and more bored with the show. So when I was told the latest episode was really worth watching, I obeyed but took the comments with a grain of salt. Turns out, my friends know me quite well.  The episode is about a bariatric patient who comes into the hospital, and they worked it around an underlying theme of patient sensitivity. There were some interesting comments made by the patient, his (thin) wife, and the doctors that are caring for him that got me thinking about perceptions…

The patient is always joking about his weight (calling himself a mountain and so on) and the implications it has for his care. Meanwhile, his wife is forever fighting by his side, insisting that he is just like everyone else. I loved the wife character - she was bold and quirky. Totally willing to put people in their place for being obviously inappropriate, rude, nosy and just plain mean: “It’s easy to make jokes about him. You didn’t know him before. You don’t know that inside all that is the man I’ve always known.”  “Joke with him. Make him feel like a person.”

How often do I try to tell people that while I might look different and no longer be able to do things I could before, I am still me somewhere inside a very sick body? I hate when people treat me like an invalid or act like I’m exaggerating how ill I am. This is me... it’s still the me that was in here before… I just don’t have the energy to show you that all the time …

An exchange between 2 doctors:

Dr. Shephard: [after saying they should send the patient a specialist center that’s set up for this type of patient] - instead of “spending our time and resources caring for someone who obviously doesn’t care for himself.”

Chief Webber: He has an illness that he can’t control… he needs help.

I mention this quote, because I think it’s a really key point that many of us have faced. People don’t always think we’re “trying” to get past our illness. They suggest that we pray more or differently, tell us about some remedy or another, or worst of all tell us to “just get past it, forget and move on already.”

Dr. Karev “[…] I’m sorry that we’ve been tiptoeing around you all day trying not to make jokes. But you’re the one that’s gotta stop. Stop calling yourself the fat guy. […] I know what it’s like to have life hand you so much crap that you just wanna sit on the couch and die. But you gotta look at what’s in front of you.  [reminds him that he has a wife that loves him and a baby on the way]”

This is the quote that I really wanted to fixate on. He tells the patient not to joke, but I don’t think moving past this stage into a healthier life should mean that he shouldn’t be able to joke around about his illnesses. Having a chronic illness isn’t an easy place to be, and sometimes you just have to laugh at yourself to get through it because there’s nothing else left to do.  That being said, I think the end of the quote made a point. There are definitely days when I think I just want to be done with it all, and that nothing is worth this… but there is always something in the future that reminds me that there are still things worth living for in this world. For me, it’s my family and the friends I rely on all over the world. And the reminder that I’m working towards a degree I’ve wanted since childhood – a central life goal. A lot has stood in my way, but I’m not going to let this illness stop me from something so near and dear to my heart.

So, readers, what think you? What keeps you going when life has you wanting to sit on the couch and die?

Sorry, Sir, “Damsel in Distress” Just Isn’t Working for Me Anymore

[This post was featured in ChronicBabe Blog Carnival #3: Learning to Live With Pain.]


If you walk into the hospital room of a child with cancer, I’m sure you’d see all the things you would expect to be there – IVs, medical charts, beloved toys and evidence of amazing caretakers who rarely leave the child’s side. You might breeze over the drawings on the wall – after all, a child living in the hospital doesn’t have a fridge to proudly display them all. You’d be amiss in not taking a closer look. Look for a monster or some other unrecognizable creature amongst the pictures of houses and family and friends and pets. Look for the picture of the cancer.

Children are often taught to visualize their diseases, to draw a picture and stick it on the wall so they have a mental image of the enemy they’re fighting. I don’t know why they don’t tell adults to do this. Maybe they think we’ll be offended that it’s too juvenile. Maybe they assume that we’re old enough to deal with our pain on our own, I don’t know. I, for one, think it’s a very useful tool.

To me, my illness, and my pain, is like a dragon. The kind of irritating one in fairy tales that is always defeated but never killed. The kind that invariably returns to torment the village again another day. The kind that nobody can seem to get rid of. The problem with a chronic illness, I’ve found, is that after you’ve been fighting that dragon over and over and over and over ... it’s the same battle and it’s gotten old. How many times can you fight the same battle? After all, it’s not like you’ve got a new weapons arsenal or some gloriously juicy intel on the dragon’s inner workings to use against it.

It’s so easy to get frustrated with fighting the dragon that we go, "ok fine, I’m just going to sit back and let somebody figure out how to get rid of this monstrous thing and come save me from it’s evil ways." It’s often easy to fall into a damsel in distress type syndrome. I sure did.

... but I’ve come to realize that this doesn’t really make sense. After all, it’s me against my disease. My dragon isn’t attacking from some cave somewhere – it lives inside my own walls, it turns my own best defences against me.  Damsel in distress makes for a good fairy tale (who wouldn’t want to be the beautiful princess without the moon face and weight gain courtesy of our favorite champion of choice, Sir Prednisone himself), but it doesn’t make for a good reality. If we stop fighting, the dragon wins. Because we’ve forgotten that there’s one thing the dragon can’t touch – and that’s our emotional state. We can fight the physical attack with the physical medications, but our mind is our own and therein lies our advantage.

So I’ve decided that I’m not the damsel in distress in my fairy tale. Instead, I get to be the noble, marauding knight in shining armour. Historical clichéd roles be damned, this is MY fantasy! So off I go, mental shield up, sword at the ready (well maybe a plastic one, because I think trying to swing around the heavy metal ones would probably make my joints pretty angry) to fight the dragon that pervades my existence. 

Why did I start blogging? A re-think.

This blog post was inspired by a post by Leslie on her blog, Getting Closer to Myself, called “Time Is A Luxury We Don’t Have.” Thank you for the inspiration!

Since I read that post, I have been thinking a lot about why I started this blog. I think one of the main reasons was to help inform the families and friends of people suffering through lupus and similar illnesses what it's really like.

In a sense, I guess I'm not worried that people will forget me so much as they will forget my experiences - and that includes me. Between the lupus fog and the fact that memories fade or change with time, I would never be able to give as accurate an account of what today was like as I can today itself.

What we experience is important. The day to day struggles are as key a part of our illnesses as the lab tests and medications and so on. If we let people forget our experiences, it's almost like they forgot us - because without an understanding of what we're going through, they can't completely understand who we are.

That being said, I do wonder if people will remember me… and if they do, how will they describe what they remember? Will they remember me as the girl that was sick all the time? (Or, as was implied by a rather rude classmate the other day, “say I’m sick [because I don’t look sick].”) Will they remember me as someone who started a program with them – but was gone so much they can’t remember if I finished it with them too? So many people don’t even know that I’m ill – I wonder what their opinions would be – and how they would change if they knew how ill I actually am.

I guess there’s really no way to know these things. In general, I’ve found that people react in three main ways.

1. they freak out and disappear
2. they freak out about how they had no idea and try to become as helpful as possible (sometimes almost overly so)
3. they pretend like they never gained this knowledge and nothing has actually changed

I’ve just slowly started sharing this blog with people that actually know me personally in the old-school, non-internet sense of the word. I guess I’m a little scared to see their reactions, because so few people have actually heard about my illness with the kind of frank honesty that I’m more willing to put down in words here. In opening myself up to them that way, I’m changing their opinions of me and only time will tell how that will affect our friendships – and, ultimately, how  they remember me.

You Can't Always Get What You Want

If there’s one thing that lupus teaches you, it’s that. It stops you from doing the exercise you want, it keeps you from the Peace Corps, it limits your career choices, your hobby choices, your (usable/enjoyable) free-time, and, sometimes, your friend choices. Lately, I’ve come to consider these limitations just more symptoms of the disease.

I went back to the doctor yesterday. He raised the methotrexate dose AND reset the prednisone taper back to 30mg. I had worked my way all the way back down to 9mg, so that was quite a blow. I get so jittery at 30mg! Sigh. On the plus side, at least he doesn’t think I need to take a break from school…

“ … all you can do is try to know who your friends are before you head off to the war … ” - Regina Spektor, “The Call”

In theory, it’s a nice sentiment, right? But if you’re fighting a chronic disease, it really doesn’t work that way. It seems to me that you find out who your friends are when you’re about six months into a bad flare up. This may seem counterintuitive, but bear with me for a minute. When a flare up first hits, people can often tell that you are distinctly ill. There is a significant difference between remission (or, at least, under control lupus) and the onset of a flare up… people worry. They ask after your heath, if they can help with anything, and so on and so forth everyone is very understanding and sweet. They understand that you’re ill – if you haven’t been too ill for too long, it’s not different from a bad bout of the flu or something that they can at least vaguely relate to.

But then you never seem to get any better. As the doctors mess with your medications. As you battle daily with the flare up symptoms, the side effects of the increased medications, and the frustration and depression that inevitably come hand-in-hand with such debilitation ad nauseum (from the duration not the meds!) ad infinitum. After awhile people just don’t understand anymore, try as they might. They don’t know what it’s like to suffer through that. They can try to imagine, but let’s face it – is it anything like what you would have guessed before you were diagnosed? You probably wouldn’t have even come close. Plus, as you get further into a flare up, some of the symptoms decrease a little, and you ramp up your tolerance so you can get through each day. The problem is, you’re often back into the dreaded “but you don’t look sick!!” zone. Don’t get me wrong. I don’t mean to say that people lose interest, or that they choose to be less supportive or anything of the sort. I think they run out of things to say. They don’t know what they can do to be helpful anymore, so they back off. It doesn’t help that you have good days and bad days – how can they even tell if you’re ill or not or what the heck is going on?

Here’s the real kicker, though. It’s not just that they wander away. You tend to disappear from their lives. No longer do you have the energy or the ability to make it out dancing and partying every weekend. And with all the time you need to spend in bed and nursing your joints, etc, etc, etc, you really need all your awake time (even more, let’s face it) to get the work done that needs to get done every day. So there go the brunches, the after work drinks, the long coffee shop chats. How many times can you decline an invitation before people stop inviting you?

Well, maybe there isn’t a very good answer for that… but at the end of the day it depends on your friends. The friends that are worth keeping around haven’t disappeared when you start to transition back into the outside world. They’re the ones that checked in on you from time to time, or, at least, welcomed you back with open arms - even if you seemed to appear and then vanish again as the flare up roller-coaster-ed around. A true friend is still a friend be it 6 days or 6 months later.

As I make my own way slowly back into the real world, I’m discovering that many of my friends have kind of phased me out. Now I realize that they wouldn’t do this on purpose, but the fact remains that conversations are now awkward. And if I want to join the fun, I have to invite myself along. It’s really frustrating to finally reach a point when you have time and energy again only to discover that nobody seems to remember you exist anymore… With my family far away, my friends were all I had. Turns out that wasn’t really the case. It’s undeniably a pretty crappy situation. Not having any friends definitely does not make this disease easier. You need supportive people. So thanks to my readers, because it helps more than I can tell you to know you are out there! … but it doesn’t change the fact that I’m sitting home alone on a Friday night.

But let me clarify, the point of this entry wasn’t (entirely) to gripe about that fact, it was to point out that it’s easy to dwell on the many, many negative aspects of a chronic disease. But there is an elusive benefit that you might not realize. I certainly didn’t. There’s no better way to know who truly cares about you than to actually need them to care. A good friend won’t let your disease come between you. You may not know who your friends are going into the battle, but definitely will by the time you come back out.

The Little Engine that Could (but should it?)

Today was one of those days. You know the kind. Those days when you know the smart thing to do is to stay in bed, but you have important stuff to do, and you just can’t be wasting your day in bed. Those are days when you are miserable from the pain all day long, and spend it cursing yourself for your stubbornness. I had one of those days today.

I woke up this morning with my knuckles looking like walnuts and my knees looking like melons. Everything hurt, and it wouldn’t have been the end of the world if I had missed class today. Yet, I insisted on getting myself out of bed. I told myself that I was forcing myself to go because I really needed to learn from class discussions and because I didn’t want to add yet another test to the growing list of exams I needed to make up. Well, mind over matter, I ended up at school.

10 hours later I returned home and collapsed into bed. As I slowly woke up a few hours later and lay in bed stretching and trying to get my joints loosened enough to get up and eat dinner, I started thinking about this morning’s decision. Why did I REALLY get out of bed beyond my better judgment? Why do we do this to ourselves when we know we’re stretching beyond our limits and we know the consequences? I didn’t want to be the unreliable student who was out sick AGAIN. I was worried that they would think I’m crying wolf. I was sick and tired of needing to stay in bed in the first place.

My whole life, every time I was discouraged, my parents would remind me of the children’s story of the Little Engine that Could. It’s been so ingrained in me to force myself to get where I need to go that I just force myself to get there. There are days like today that I dig down and remember that story and my parents encouragement and get myself where I need to go. Or, at least, where I think I need to go. The question is: should I be going there? Just because I can force myself to do it, is it really the best decision? Maybe sometimes the Little Engine that Could should choose not to.