Holy June Batman! Wow, time is flying by, and I haven’t been posting much lately. As a quick update, I’ve been teaching undergrad stats during spring term. The prep work it takes to teach this class is eating my time, and I’m very much looking forward to some time off when class finishes in a few weeks. And I just got back from spending a wonderful weekend in New York and New Jersey, meeting my boyfriend’s parents.
All in all, things are mostly good.
But I want to take a step back…
Several weeks ago, I was hit with a wave of nausea and dizziness that stopped me in my tracks. I actually had to decide whether I would be able to make it to help proctor my students’ final exam; that’s how bad it was. Ultimately, I did make it to the exam.
But this kind of cycling in a single day has always been hard for me to deal with. I can feel pretty good, and then will totally hit rock bottom for a few hours, and then I will feel better again. Not only does this mess with me physically, but it takes an emotional toll, as well.
So when I have days like this, what should I consider it? Is it a “sick” day or is it just a “typical” day in the life of a lupus/rheumatoid arthritis patient? There are obviously bad days, when I am completely down and out, and there is no relief in sight. But more often, there are days where a few hours will be absolutely terrible, and then I’ll be okay.
I do know that as of late that I am having more good than bad days, which is great, and probably the first time since my diagnosis that I’ve said this. But I’m also having more flare-ups of lupus symptoms than in the past. And new symptoms that seem to point toward a somewhat more active state of lupus, as I wrote about in my last post.
I don’t have an appointment with my rheum until the end of June, but I really want to work to try and get out in front of lupus and rheumatoid arthritis, so that a sick day is no longer what all other days are measured against.
It’s difficult because I think many of us try very hard to quantify things, when certain things can’t be so easily measured or counted. Although I can say that I haven’t taken a single prednisone in nearly four months. Getting people off of steroids always seems to be a way that illness severity is measured, so looking at it from that standpoint, I’m doing very well.
Something else I haven’t mastered, however, is not pushing myself too hard on the good days. Feeling good makes me think that I’m completely cured, until I push too hard and get kicked in the butt for it. Lupus knows how to stick it to me in that way.
However, after getting back from a busy weekend on the East Coast, I know that last year at this time, I probably would not have come back from this trip unscathed. I’d be much worse for the wear. But this time, (hopefully I’m not speaking too soon), the most nagging complaints are a little sunburn and some blisters on my feet. I did get much more fatigued than I would have pre-illness, but there is definitely something to be said for not being in pain.
And I actually have a significant other in my life who is willing to accommodate/acquiesce to my schedule. I don’t feel like we missed out on anything, but we kept Saturday open, as it’s my day to take MTX. We both knew that mixed in with the busy and the crazy needed to be some relaxation time. And I think that may have done the trick. (Maybe I’m learning something…finally…)
A few weeks ago I wrote a note to myself:
MTX is kicking my ass today. I can feel the bile rising in my throat, the waves of nausea and dizziness, that unsurprisingly, come with a drug considered “chemotherapy”. I frantically press the buttons on my coffee maker, only to realize that I’ve forgotten to put the cup there. I’m trying hard to concentrate on this task, so that maybe, just maybe, I won’t puke.
And it’s weird, because some days are fine. I take the MTX and that’s it. I pop the pills – six tiny, ridiculously small pills, maybe the tiniest pills I’ve ever seen that would seem to do absolutely nothing – and other times it hits me right between the eyes and I’m out of commission.
This week was fine. But it’s kind of a chicken and egg thing. Was I fine because I didn’t do much, or did not doing much make things okay? I’ll never know.
But what I do know is that I’m grateful for the good days, and am trying not to let the bad days define my existence. It’s a constant struggle for balance, and I don’t always know when things are going to fall apart, but I am beginning to see the gradation of how I feel. I know I have to be okay with a certain amount that I can’t control. And when I do feel bad, I have to accept it, rather than try to work against it.
Nothing is written in stone, and I certainly can’t make a deal with my illnesses. But I can do my part to make sure I am feeling good, at least most of the time, and know when to stop when I’m not.
My schedule is pretty crazy for the next few weeks, so I’m hoping I’ll be able to make it through. That’s really all I can do.
Showing posts with label Random. Show all posts
Showing posts with label Random. Show all posts
Tuesday, June 1, 2010
Saturday, March 21, 2009
“Hips Don’t Lie” (But Faces Do…)
“I’m fine, and my hips are fine. My false knee is fine. My false hips are fine. Everything’s cooking.”
- Liza Minnelli
Why the title of this post, you’re wondering? Because I think my hips are a metaphor for my life, albeit in a rather awkward and roundabout way. My hips tell me a lot about how I’m doing…
This week was not so good in the health department. I’ve been exhausted and in pain. But the main thing is that my hips have been giving me a lot of trouble. And they seem to be one of the first things to flare up, especially when I overload my already too heavy bag and trek nearly a mile to campus.
The point is, you can carry around excess baggage until you’re blue in the face, but whether your food indulgences go straight to your hips or you’re carrying the wait of the world on your shoulders, it’s always the hips that feel the brunt of it (sad, but true, I know).
We wear masks to conceal are true feelings, and I’ve become rather adept at hiding my pain from others. Sure, there are some who see through it, but it all comes back to the hips. One friend of mine told me that she used to look over at me during class. If my legs were crossed, she knew it was a good day. If my legs weren’t crossed, she knew I was in pain. Pretty ironic, huh?
Something that surprises me is how little we really know about the people in our lives, whether it’s because they haven’t told us or we haven’t bothered to ask (or have been afraid to). But when you’re walking slowly and can’t keep up, or you’re limping, it’s pretty obvious to others that there’s something going on…
Yes, I have a love-hate relationship with my body; I hate to love my body, and my body loves to hate me. And I am trying to work through this, I really am. But yesterday morning was one of those times when I pushed myself to workout, and now I am completely regretting it.
So, maybe the saying shouldn’t be “read my lips,” but rather, read my hips. On second thought, maybe not…
At least for me right now, it seems like it’s all in the hips…
Friday, January 16, 2009
Breaking My Silence (And Possibly Other Things)
Okay, so the “other things” part is only half serious. Yesterday, I fell in my apartment. It was one of those times that I was glad I was alone – because as of late, I’m feeling a little bummed about being by myself most of the time – but this was one of those moments where you look around to make sure no one saw, even though there was nobody else there. Although I’m fairly sure the people that live below me must have heard it.
This is not a glamorous story. I basically missed my rolling desk chair, lost my balance, and fell sideways. And of course, I had to land on my right hip and elbow, the body parts that give me the most constant and consistent trouble. And this makes me not believe that “the bigger they are, the harder they fall,” because I fell pretty darn hard.
Floor meet Leslie. Leslie meet floor. Hello…floor.
Come to think of it, my hair dryer fell off my bathroom shelf the other morning, and smacked my left wrist. Maybe I should just stay on the couch. That seems to be the safest place for me lately.
Other than a little bit of bruising, and a fairly big bruise to my ego, I’m fine, although I’ve been feeling a bit off these past few days (both emotionally and physically).
The past few weeks have been difficult, to say the least. I had started writing a few posts that I had intended to finish, but then my cousin died, and everything else took a backseat. I haven’t really had time to adjust to the new semester, and it has been difficult to reflect on some of the topics that I wanted to write about.
Walking to campus for the first time since break really tired me out. I really felt out of shape. My ankle was sort of swollen by the time I got home, which has never happened before. And the first day of school, I woke up and felt “wasted.” And if you have lupus, you know exactly what I’m talking about. My head just didn’t feel right, like I’d never slept, and I felt vaguely hungover.
On the other hand, though, the last few times I’ve exercised, it has actually felt energizing, rather than energy depleting for the first time in over a year.
Given the physical (lack of sleep) and emotional toll that the past few weeks have taken, I am surprised that I haven’t flared.
That’s all I have…for now…
This is not a glamorous story. I basically missed my rolling desk chair, lost my balance, and fell sideways. And of course, I had to land on my right hip and elbow, the body parts that give me the most constant and consistent trouble. And this makes me not believe that “the bigger they are, the harder they fall,” because I fell pretty darn hard.
Floor meet Leslie. Leslie meet floor. Hello…floor.
Come to think of it, my hair dryer fell off my bathroom shelf the other morning, and smacked my left wrist. Maybe I should just stay on the couch. That seems to be the safest place for me lately.
Other than a little bit of bruising, and a fairly big bruise to my ego, I’m fine, although I’ve been feeling a bit off these past few days (both emotionally and physically).
The past few weeks have been difficult, to say the least. I had started writing a few posts that I had intended to finish, but then my cousin died, and everything else took a backseat. I haven’t really had time to adjust to the new semester, and it has been difficult to reflect on some of the topics that I wanted to write about.
Walking to campus for the first time since break really tired me out. I really felt out of shape. My ankle was sort of swollen by the time I got home, which has never happened before. And the first day of school, I woke up and felt “wasted.” And if you have lupus, you know exactly what I’m talking about. My head just didn’t feel right, like I’d never slept, and I felt vaguely hungover.
On the other hand, though, the last few times I’ve exercised, it has actually felt energizing, rather than energy depleting for the first time in over a year.
Given the physical (lack of sleep) and emotional toll that the past few weeks have taken, I am surprised that I haven’t flared.
That’s all I have…for now…
Monday, January 5, 2009
"Why Does Distance Make Us Wise?" A Lesson In Letting Go
I have never really been “into” New Years resolutions, not because I can’t follow through on them, but because I usually decide to change things about myself that are not really amenable to change. But this year, I’m in the mood to make a resolution that I make a concentrated effort at following through on – because I can.
I’m at a crossroads in my life where I can either take a leap of faith or not. It’s like when you’re a kid and you’re hanging from the monkey bars, too afraid to reach for the next bar, and too afraid to let go of the bar and land on the ground. So you’re just… stuck…
So whether its letting go of people in my life who I no longer have the things in common with that held us together, being okay with making choices in my life that others don’t agree with, or letting new people in, I have to follow my own intuition more, listen to others less, and know when my energy is better spent elsewhere and on other things.
That’s where I feel my life is right now. And I think I have a pretty good idea about why I am where I am.
So my resolution is to become better at letting go of things. I’m an over-analyzer; I analyze, re-analyze, and analyze some more. I’m not good at letting go of people or things. It’s a pretty non-discriminating quality.
But I have been thinking a lot about the people that have hurt me lately and the fact that I give them far more energy than they deserve. And I have been evaluating the friendships and relationships in my life that are truly meant to last.
And because there is always a lesson in “Sex and the City,” here is Carrie Bradshaw’s take on letting go:
I’m at a crossroads in my life where I can either take a leap of faith or not. It’s like when you’re a kid and you’re hanging from the monkey bars, too afraid to reach for the next bar, and too afraid to let go of the bar and land on the ground. So you’re just… stuck…
So whether its letting go of people in my life who I no longer have the things in common with that held us together, being okay with making choices in my life that others don’t agree with, or letting new people in, I have to follow my own intuition more, listen to others less, and know when my energy is better spent elsewhere and on other things.
That’s where I feel my life is right now. And I think I have a pretty good idea about why I am where I am.
So my resolution is to become better at letting go of things. I’m an over-analyzer; I analyze, re-analyze, and analyze some more. I’m not good at letting go of people or things. It’s a pretty non-discriminating quality.
But I have been thinking a lot about the people that have hurt me lately and the fact that I give them far more energy than they deserve. And I have been evaluating the friendships and relationships in my life that are truly meant to last.
And because there is always a lesson in “Sex and the City,” here is Carrie Bradshaw’s take on letting go:
“Maybe the past is like an anchor holding us back. Maybe you have to let go of who you were, to become who you will be.”
The past is just that – it’s the past. It’s done, it’s over with, and it’s time to move on. And while I know that, that is much easier said than done, I’m at a point in my life where I can no longer afford to ruminate about past slights and hurts, which I have done to others and others have done to me, decisions and indecisions, and all of the other things that are preventing me from moving forward in my life. I need to concentrate on the future. My future. And hopefully 2009 is the beginning of something great!
Wishing everyone a happy and (as) healthy (as possible) 2009. Sorry I’ve been a delinquent blogger these past few weeks. The holidays, getting together with family and friends, a slow Internet connection, and a lot of reading pretty much did me in. But it’s a new year, and I promise to be more consistent with blogging (and my medication schedule)!
Friday, December 26, 2008
Happy Holidays Everyone!
Just wanted to wish everyone a very happy and *healthy* holiday season and a wonderful 2009! Posts will resume as soon as I am back from break!
Thursday, December 11, 2008
Tis The Season For Retail Therapy
Let’s admit that we all have weaknesses - chocolate, shopping, others that can’t be mentioned here...
Lately, I’ve found comfort in retail therapy. If I’m feeling really upset, I’ll just hop online and buy something to make myself feel better. The best part of it is that I can order things from the comfort of my apartment (the comfort of my own chair, really). Even though it’s delayed gratification, there is an immense amount of anticipation waiting for said purchases to arrive at my door (give me a little credit – I do have some self control).
I am ashamed to say that on occasion, however, I have forgotten about purchases and only remember them once my credit card bill comes. My spending isn’t out of control, but the lack of recall bothers me.
Anyway, I have long lamented the idea of clothes shopping. But shoes are another thing entirely. And lately, my purchases have been of the more practical (but fun) nature. Observe:
Lately, I’ve found comfort in retail therapy. If I’m feeling really upset, I’ll just hop online and buy something to make myself feel better. The best part of it is that I can order things from the comfort of my apartment (the comfort of my own chair, really). Even though it’s delayed gratification, there is an immense amount of anticipation waiting for said purchases to arrive at my door (give me a little credit – I do have some self control).
I am ashamed to say that on occasion, however, I have forgotten about purchases and only remember them once my credit card bill comes. My spending isn’t out of control, but the lack of recall bothers me.
Anyway, I have long lamented the idea of clothes shopping. But shoes are another thing entirely. And lately, my purchases have been of the more practical (but fun) nature. Observe:
My awesome rain boots!
My puffy, pink boots. They kind of remind me of Wonder Woman’s boots, but lately, I need all the girl power I can get!
And finally… My new, gray Kangaroos. I have two other pairs of these in wild colors, but I needed a more everyday, neutral pair.
I have small feet and it’s hard for me to buy shoes, so these three pairs are a major jackpot.
I am aware that this is not the best coping skill – but I’m trying to limit the rest of my spending to holiday gifts. Retail therapy for me and a gift for someone else. Does it get any better than that?
And finally… My new, gray Kangaroos. I have two other pairs of these in wild colors, but I needed a more everyday, neutral pair.
I have small feet and it’s hard for me to buy shoes, so these three pairs are a major jackpot.
I am aware that this is not the best coping skill – but I’m trying to limit the rest of my spending to holiday gifts. Retail therapy for me and a gift for someone else. Does it get any better than that?
There may be some truth to Paolo Nutini’s song “New Shoes,” afterall. “Hey, I put some new shoes on/And suddenly everything is right.” Maybe?
Monday, December 8, 2008
Peppermint Brownies
I went to a party Friday night and made brownies for the occasion. It has been so long since I cooked, I really had no idea how this experimental recipe was going to turn out. But it was a success.
Nothing settles a crummy weekend like chocolate! (plus they are almost guilt free - seriously)!
There’s a whole bag of Starlight mints on top of those babies. Too bad all of the pan smacking came before all the drama…
And I’ll admit, I was feeling a little festive.
Nothing settles a crummy weekend like chocolate! (plus they are almost guilt free - seriously)!
There’s a whole bag of Starlight mints on top of those babies. Too bad all of the pan smacking came before all the drama…
And I’ll admit, I was feeling a little festive.
(My camera is still out of commission. Thanks D for photographing!)
Tuesday, December 2, 2008
A Little Shameless Self Promotion
Wow, I am so behind on life at the moment, so this is going to be a really quick post.
Check out last week’s Grand Rounds, hosted by Canadian Medicine. It’s a very diverse edition of Grand Rounds and features a post by yours truly.
Also, I contacted Ellyn Spragins, the author of “What I Know Now: Letters to My Younger Self”. I shared the letter I wrote to myself with her and she asked if she could publish it on her site. Check out my letter! Thanks, Ellyn!
Once my life calms down a bit in terms of workload, I’ll be back on the blogging circuit.
Check out last week’s Grand Rounds, hosted by Canadian Medicine. It’s a very diverse edition of Grand Rounds and features a post by yours truly.
Also, I contacted Ellyn Spragins, the author of “What I Know Now: Letters to My Younger Self”. I shared the letter I wrote to myself with her and she asked if she could publish it on her site. Check out my letter! Thanks, Ellyn!
Once my life calms down a bit in terms of workload, I’ll be back on the blogging circuit.
Tuesday, November 4, 2008
This Is Hilarious… And So Not True!!!
But it certainly put a smile on my face (and made me have delusions of grandeur about how much sway I have in the world)!
Where do people come up with this stuff?
* Please note that there is language in the above link that is not suitable for children. Please make sure that there are no children in the room when you click on the link. (I’m just trying to be a responsible citizen!)
Thursday, October 16, 2008
My Letter To My “Younger” Self
I was inspired to write this after reading “What I Know Now: Letters to My Younger Self”. This letter isn’t written to myself at any particular time in my life, since I would still like to consider myself young, despite how my body makes me feel on most days. It is written to my healthy self, however. Honestly, this letter feels oddly personal and raw to me in a way that very little else has.
*****
Dear Les,
You know all those times you’d watch TV and worry that maybe you had the same disease as that person on “ER.” Guess what? You didn’t. And you probably never will. And the time that you and everyone else puts off your feeling lousy as stress is the time you really will get kicked in the ass by illness. And it’s going to suck really bad a lot of time. But you’ll get through it. You always do. And you are going to get incredibly ticked off when prime time hospital dramas turn into reality TV for you.
In my eyes, I see the long red hair that you only ever cut out of necessity. You’re a unique mix of Anne of Green Gables and Sandra Bullock’s character in “Miss Congeniality” – stubborn, tempered, smart, emotional, and well, admit it, you’re a pretty big klutz. But when you do things, you do them with your whole heart and that’s an important trait to have.
Not taking risks doesn’t preserve you from danger. It only makes it worse when you are finally felled by some invisible foe that you never imagined.
I think back to that time, I think you were around five then. And you took the train to Toronto and you chronicled the journey on a Sony tape recorder. Even then everyone knew you were going to go places…
One question I keep forcing myself to ask is - would I have been any more prepared for this at another age? And the answer is a resounding no. I think that maybe if I were older and more settled in my life, things might have been easier in some ways, but harder in others. The truth is it would have rocked my foundation no matter what. Sometimes, there are things in life that inevitably make us question the validity of everything we thought we knew.
And now, my demons bear down on me and take many forms. They are the result of a squandered youth. You don’t want to be that person who was always too mature for her age and then end up being forced to really grow up in an instant. But no matter how hard you try, that is what is going to happen.
So I know that technically I’m still my “younger” self, but here’s all the advice and words of wisdom I’m capable of giving…
Think about the last time and place you felt safe and really comfortable in your own skin. Go there in your mind.
Don’t think about the person you want to be, become that person.
When you look back, don’t regret the road not taken. Think of all the lessons you learned along the road you did take. Embrace your fears, your insecurities. Use them to your advantage, don’t let others use you.
You know what, little girl? You came of age in a turbulent world. A world full of uncertainty at every turn. Rather than fear it, embrace the unknown and let it carry you.
But in my heart I know that while it may take time, lots of time, you’re going to be okay!
And while your quiet life in quintessential suburbia tried to shelter you, you soon enough met the world with both its wonders and its flaws.
And someday you will stand taller than your 4’11”.
You are stronger and braver than most people give your credit for.
Don’t judge others in ways you, yourself, don’t want to be judged.
Don’t assume things based on people’s appearances. As you know first hand, appearances can be deceiving.
The path you travel will be a rocky one. But although sporadic, there will be people to cheer you on along the way. It’s easier to listen to the dissenters rather than the cheerleaders, but the cheerleaders will make you strong.
And do me a favor, will you? Before you get too busy with others, think about yourself (for a change).
Don’t be afraid to take risks – not stupid risks, but necessary ones.
The things you will regret most will be the things filed under “peer pressure”. When you followed others and did not listen to yourself, those are the times you wish you could take back. Remember that time you hopped on your bike and tried to churn up dust like Jonathon? You got a nice scar on your knee to prove your valor. And that’s the only scar you’ll have from those days. But trust me, kid, there will be more scars in the future, some you will be able to hide, others not, no matter how hard you try.
I honestly can’t believe I’m saying this, but… REBEL. Do it before it’s too late, before the only rebelling you can do will be going against “doctor’s orders”. Before it actually will impact your life and your health. Don’t go crazy, but do go against the grain, stray from the path once in awhile.
Wear Your Flaws Like A Badge Of Honor.
Your Best and Worst Critic,
Leslie
Wednesday, October 15, 2008
It's The Little Things In Life...
Imagine my surprise when I came up last night to find an envelope from ChronicBabe. Turns out I was one of 20 essay contest winners. It made my day to get the t-shirt and buttons pictured above.
And I figured as an added bonus I would share with you the essay that I submitted:
Why do I love ChronicBabe? That’s an easy question. I love ChronicBabe because I am a chronic babe… and I’m quickly learning to become proud of that distinction. When I received my diagnosis of lupus and rheumatoid arthritis in April, I thought my life was over. But I quickly learned that I am not alone in all of this. ChronicBabe has helped me to realize that and has introduced me to others just like me. This is one of the greatest gifts that I could have ever received. ChronicBabe has taught me that our illnesses should be worn as badges of honor, rather than as patches of shame. And so as ChronicBabe celebrates its 3rd birthday, it also celebrates all of us Chronic babes out there who are learning to cope, to be strong, to be proud, and despite our illnesses, to love ourselves everyday.
Tuesday, October 7, 2008
Under The Guise of Control…What Will I Become?
I’m having a difficult time emotion-wise this week for a few reasons:
1) Hormones – need I say more?
2) Struggling to keep up with work and school commitments, etc.
3) The weather
4) Being forced to face the truth about my life
As I’ve said before, this semester seems to be forcing me into a corner, forcing me to stay there until I admit the reasons for crawling there in the first place.
We all have questions that we ask ourselves, some we share with others and some we don’t. And I think one thing about discussing illness with others is that it makes it “real.” It puts it out there for people to “see.” It is no longer something that is hidden from view. It becomes something that people actually have to acknowledge.
And the whole idea makes me more than a little squeamish.
And I don’t mean making a self-deprecating joke about being a 23-year old in the body of an 80-year old. I mean the way you would if there was a self-help group for the chronically ill like there is for alcoholics.
“Hi, I’m Leslie. And I have lupus and rheumatoid arthritis.”
One thing this does is it makes peoples reactions real, as well. If people treat you poorly or unfairly, it isn’t because you’re ill if they don’t know that you are. And yet often we resent or hold people responsible for their lack of knowledge. Like somehow, by osmosis, they are supposed to get it. So if we do tell people and they react in many of the awful ways that many of us experience, there is no excuse for those actions.
I guess what I’m trying to say is that I feel a lot of people are misunderstanding me lately and I’m not quite sure how to get them to understand without just coming right out and telling them what’s going on. And even still, that doesn’t always lead to understanding.
I think that people see me as being particularly stressed or busy and don’t understand why I feel that way. It’s difficult trying to balance health and everything and still remain on a level playing field with everyone else.
You know, I want to say that I lived the best years of my life despite my illness.
And it seems silly to think of vanity at times like this. But the truth is, a big part of me thinks that if only I can literally “keep up appearances,” somehow I can really be ahead of the curve. Maybe I’ve just been watching too many shows about plastic surgeons and perfect bodies. Or maybe it’s something else. Something deeper taking hold of me.
I feel like before, I had the typical body issues. I’m too short, not thin enough, etc. But now the fact is, those things don’t matter. I’m stuck in a body that for some mysterious reason has decided to go crazy on me for no particular reason. I find myself in a body I despise and for all intents and purposes, my body despises me as well. And what little control I thought I had is left to pick up the pieces of this mess. And I wonder what becomes of someone who is stuck in a body that won’t cooperate. There are things I want to do, but can’t. There are things I want to understand about all this, but I can’t.
It makes me think of the song, “Why Can’t We Be Friends?” And I feel like I’m constantly asking my body the same question.
I think there is a feeling that I want to look in the mirror and not see a stranger. I see someone going through the motions, but not really taking stock or getting enjoyment from things. I keep thinking, one of these days, I’m going to post a really happy, uplifting post. And then something happens and I sit down to write and what spills out of me isn’t really happy at all. It’s the hard truth, but it’s not necessarily a happy one.
I hope that one day I will be okay with not having control of my life.
1) Hormones – need I say more?
2) Struggling to keep up with work and school commitments, etc.
3) The weather
4) Being forced to face the truth about my life
As I’ve said before, this semester seems to be forcing me into a corner, forcing me to stay there until I admit the reasons for crawling there in the first place.
We all have questions that we ask ourselves, some we share with others and some we don’t. And I think one thing about discussing illness with others is that it makes it “real.” It puts it out there for people to “see.” It is no longer something that is hidden from view. It becomes something that people actually have to acknowledge.
And the whole idea makes me more than a little squeamish.
And I don’t mean making a self-deprecating joke about being a 23-year old in the body of an 80-year old. I mean the way you would if there was a self-help group for the chronically ill like there is for alcoholics.
“Hi, I’m Leslie. And I have lupus and rheumatoid arthritis.”
One thing this does is it makes peoples reactions real, as well. If people treat you poorly or unfairly, it isn’t because you’re ill if they don’t know that you are. And yet often we resent or hold people responsible for their lack of knowledge. Like somehow, by osmosis, they are supposed to get it. So if we do tell people and they react in many of the awful ways that many of us experience, there is no excuse for those actions.
I guess what I’m trying to say is that I feel a lot of people are misunderstanding me lately and I’m not quite sure how to get them to understand without just coming right out and telling them what’s going on. And even still, that doesn’t always lead to understanding.
I think that people see me as being particularly stressed or busy and don’t understand why I feel that way. It’s difficult trying to balance health and everything and still remain on a level playing field with everyone else.
You know, I want to say that I lived the best years of my life despite my illness.
And it seems silly to think of vanity at times like this. But the truth is, a big part of me thinks that if only I can literally “keep up appearances,” somehow I can really be ahead of the curve. Maybe I’ve just been watching too many shows about plastic surgeons and perfect bodies. Or maybe it’s something else. Something deeper taking hold of me.
I feel like before, I had the typical body issues. I’m too short, not thin enough, etc. But now the fact is, those things don’t matter. I’m stuck in a body that for some mysterious reason has decided to go crazy on me for no particular reason. I find myself in a body I despise and for all intents and purposes, my body despises me as well. And what little control I thought I had is left to pick up the pieces of this mess. And I wonder what becomes of someone who is stuck in a body that won’t cooperate. There are things I want to do, but can’t. There are things I want to understand about all this, but I can’t.
It makes me think of the song, “Why Can’t We Be Friends?” And I feel like I’m constantly asking my body the same question.
I think there is a feeling that I want to look in the mirror and not see a stranger. I see someone going through the motions, but not really taking stock or getting enjoyment from things. I keep thinking, one of these days, I’m going to post a really happy, uplifting post. And then something happens and I sit down to write and what spills out of me isn’t really happy at all. It’s the hard truth, but it’s not necessarily a happy one.
I hope that one day I will be okay with not having control of my life.
Friday, October 3, 2008
A Month of Six-Word Memoirs
So, I promised and I’m delivering on that promise (see Another Must Read). Here is my month’s worth of six-word memoirs:
September 1, 2008 - When I can’t choose – do everything!!!
September 2, 2008 - Prisoner to my own self-loathing.
September 3, 2008 - Still wish I had my pacifier.
September 4, 2008 - Another day on the lupus train.
September 5, 2008 - Never got far playing it safe.
September 6, 2008 - After everything, I’m still standing (short).
September 7, 2008 - Born outside Detroit. Meant for Chicago.
September 8, 2008 - A dollar for every blog post…
September 9, 2008 - I wouldn’t need grad school anymore!
September 10, 2008 - It’s Rott. Pronounced R-o-t. Got that?
September 11, 2008 - A day I would rather forget…
September 12, 2008 - Short redhead female seeks tall man.
September 13, 2008 - Love or loathe me; please decide.
September 14, 2008 - I am a rock, an island.
September 15, 2008 - Doctor gives diagnosis, leaves the room.
September 16, 2008 - A series of very unfortunate events.
September 17, 2008 - I am – has been, never was.
September 18, 2008 - Hate driving, hate rheumatoid arthritis more.
September 19, 2008 - That’s me. The one you overlooked.
September 20, 2008 - I’m Baby in corner, without Johnny.
September 21, 2008 - Smutty romance novels turn me on.
September 22, 2008 - I have been waiting – still waiting…
September 23, 2008 - I’m always early – time never waits.
September 24, 2008 - I fall, I get up again.
September 25, 2008 - I just might be that awesome!
September 26, 2008 - I am me. That is enough.
September 27, 2008 - Not engaged, reads wedding magazines anyway.
September 28, 2008 - From Cinderella’s castle to Ivory Tower.
September 29, 2008 - Prince Charming? He’s still out there…
September 30, 2008 - Writing is food for my soul.
September 1, 2008 - When I can’t choose – do everything!!!
September 2, 2008 - Prisoner to my own self-loathing.
September 3, 2008 - Still wish I had my pacifier.
September 4, 2008 - Another day on the lupus train.
September 5, 2008 - Never got far playing it safe.
September 6, 2008 - After everything, I’m still standing (short).
September 7, 2008 - Born outside Detroit. Meant for Chicago.
September 8, 2008 - A dollar for every blog post…
September 9, 2008 - I wouldn’t need grad school anymore!
September 10, 2008 - It’s Rott. Pronounced R-o-t. Got that?
September 11, 2008 - A day I would rather forget…
September 12, 2008 - Short redhead female seeks tall man.
September 13, 2008 - Love or loathe me; please decide.
September 14, 2008 - I am a rock, an island.
September 15, 2008 - Doctor gives diagnosis, leaves the room.
September 16, 2008 - A series of very unfortunate events.
September 17, 2008 - I am – has been, never was.
September 18, 2008 - Hate driving, hate rheumatoid arthritis more.
September 19, 2008 - That’s me. The one you overlooked.
September 20, 2008 - I’m Baby in corner, without Johnny.
September 21, 2008 - Smutty romance novels turn me on.
September 22, 2008 - I have been waiting – still waiting…
September 23, 2008 - I’m always early – time never waits.
September 24, 2008 - I fall, I get up again.
September 25, 2008 - I just might be that awesome!
September 26, 2008 - I am me. That is enough.
September 27, 2008 - Not engaged, reads wedding magazines anyway.
September 28, 2008 - From Cinderella’s castle to Ivory Tower.
September 29, 2008 - Prince Charming? He’s still out there…
September 30, 2008 - Writing is food for my soul.
Wednesday, October 1, 2008
Responding To The Call
I just want to thank everyone who helped spread the word about my call for submissions. Your help in this effort is greatly appreciated!
If you wanted to write something, but weren’t able to submit it by the deadline and are still interested in doing so, please e-mail me ASAP at gettingclosertomyself@gmail.com so we can make an alternative arrangement.
Thanks, again!
If you wanted to write something, but weren’t able to submit it by the deadline and are still interested in doing so, please e-mail me ASAP at gettingclosertomyself@gmail.com so we can make an alternative arrangement.
Thanks, again!
Tuesday, September 23, 2008
Lupus Pufus
A quick nod at my friend Maria over at My Life Works Today! She and I have been talking a lot lately about how great minds think alike and I am inclined to agree, yet again, based on her post today on lupus walks and illness advocacy.
Now, I’ll be the first one to tell you that this whole chronic illness community is about shared experience and not competition, but I can tell you that I was incredibly put-off to see that Oprah had devoted nearly all of her October issue to breast cancer.
While I am certainly sympathetic to the cause, as I think we all are, breast cancer advocacy is everywhere, even on cereal boxes. But where’s the advocacy for all of the other horrible diseases that plague women in this country?
You know, Oprah used to be the “poster girl” for going against the grain, but lately, all I see her doing is contributing to mainstream, middle of the road conceptions of life. And I’m sorry to say that I’ve had enough!
Now, I opted not to take part this year in walks for lupus or rheumatoid arthritis. The reason being that this is all still too new for me. So before you go calling me a hypocrite, think of this:
Imagine the scene in “Miss Congeniality” where Sandra Bullock is “gliding” across the street and a cab almost hits her. She yells at the cabbie, “I’m gliding here!” Well imagine that scene with me in it and I’m yelling at the cabbie, “I’m coping here!”
We all have different ways of dealing with our illnesses. For me, acknowledging my illnesses in such a “public” way is honestly something I’m just not ready to do yet. But that doesn’t mean that I’m not thinking of ways to get involved or educate those around me. And clearly since I blog about it almost everyday, I’m not going to be “silent” forever.
I think that it is important that all of us do what we can to be a part of the effort. While breast cancer survival rates are increasing, there hasn’t been a new medication introduced to treat lupus in over 40 years! What does that tell you?
And in her post, Maria makes an excellent, excellent point about the fact that it is pretty absurd to expect people who can barely make it through most days to be the ones solely responsible for the advocacy that happens. Obviously, if we don’t stand up for ourselves, no one will. But from the way I see it, there are very few healthy people really fighting for the cause.
So let’s be the change we want to see!
Now, I’ll be the first one to tell you that this whole chronic illness community is about shared experience and not competition, but I can tell you that I was incredibly put-off to see that Oprah had devoted nearly all of her October issue to breast cancer.
While I am certainly sympathetic to the cause, as I think we all are, breast cancer advocacy is everywhere, even on cereal boxes. But where’s the advocacy for all of the other horrible diseases that plague women in this country?
You know, Oprah used to be the “poster girl” for going against the grain, but lately, all I see her doing is contributing to mainstream, middle of the road conceptions of life. And I’m sorry to say that I’ve had enough!
Now, I opted not to take part this year in walks for lupus or rheumatoid arthritis. The reason being that this is all still too new for me. So before you go calling me a hypocrite, think of this:
Imagine the scene in “Miss Congeniality” where Sandra Bullock is “gliding” across the street and a cab almost hits her. She yells at the cabbie, “I’m gliding here!” Well imagine that scene with me in it and I’m yelling at the cabbie, “I’m coping here!”
We all have different ways of dealing with our illnesses. For me, acknowledging my illnesses in such a “public” way is honestly something I’m just not ready to do yet. But that doesn’t mean that I’m not thinking of ways to get involved or educate those around me. And clearly since I blog about it almost everyday, I’m not going to be “silent” forever.
I think that it is important that all of us do what we can to be a part of the effort. While breast cancer survival rates are increasing, there hasn’t been a new medication introduced to treat lupus in over 40 years! What does that tell you?
And in her post, Maria makes an excellent, excellent point about the fact that it is pretty absurd to expect people who can barely make it through most days to be the ones solely responsible for the advocacy that happens. Obviously, if we don’t stand up for ourselves, no one will. But from the way I see it, there are very few healthy people really fighting for the cause.
So let’s be the change we want to see!
Thursday, September 11, 2008
September 11: A Day To Remember (For Several Reasons)
In a weird coincidence (the fact that it’s September 11), today marks a year since my first “official” doctor’s appointment that got me on the road to being diagnosed with lupus and rheumatoid arthritis.
One of the things that I have privately struggled with over the last year is what dates to mark on the calendar. When you have a chronic illness (or a few of them), what dates are important to remember (or for that matter, forget)?
I think for chronically ill people, many of us struggle for so long before we receive a diagnosis that there are many steps along the way. For me, that certainly means that a date I won’t ever be able to forget is April 9, 2008, which is the date when I received the most “official” diagnosis (to date).
But obviously, as this post suggests, this crazy slide into chronic illness began long before some doctor pinned a name on my diseases.
I can remember a year ago, venturing into my first appointment with my new doctor (who I no longer go to), realizing that I actually had a reason to be there. Two weeks into grad school and I suddenly was feeling like an 80-year-old… overnight. Of course, I had been trying to ignore the nagging feeling in my joints and muscles that at first was only after I worked out and had quickly become an everyday, all-the-time occurrence.
Do I mark the date when I had that vertigo episode several years ago, the day when I nearly drowned in the shower – an occurrence that so many played off as nothing for so long? I’ll never forget the date of that because it happened on my parent’s anniversary – July 16.
Do I mark the date when I began (January 9, 2008) and ended (August 8, 2008) my first adventure with prednisone?
Or does any of this matter at all? Some days are good, some days are bad, and when you’re chronically ill, it’s important to mark everyday for the steps and missteps that are bound to happen along the way?
This all sends me in a tailspin, just thinking about it. I fear that eventually there will be far to many dates to write down, keep track of, let alone remember. Just writing this post fills me with emotion that I didn’t expect to feel.
It makes me yearn for the world that was September 10, 2007, just as I did when I was a sophomore in high school, thinking that if only the world could go back to September 10, 2001, everything would be fine. That if history could reverse itself by a single day, the events that devastated lives would never have to happen at all. But obviously, that’s not how the world works. I’m no longer jaded by the naïve thinking that I was when I was a sophomore in high school and the “real” September 11 happened.
One of the things that I have privately struggled with over the last year is what dates to mark on the calendar. When you have a chronic illness (or a few of them), what dates are important to remember (or for that matter, forget)?
I think for chronically ill people, many of us struggle for so long before we receive a diagnosis that there are many steps along the way. For me, that certainly means that a date I won’t ever be able to forget is April 9, 2008, which is the date when I received the most “official” diagnosis (to date).
But obviously, as this post suggests, this crazy slide into chronic illness began long before some doctor pinned a name on my diseases.
I can remember a year ago, venturing into my first appointment with my new doctor (who I no longer go to), realizing that I actually had a reason to be there. Two weeks into grad school and I suddenly was feeling like an 80-year-old… overnight. Of course, I had been trying to ignore the nagging feeling in my joints and muscles that at first was only after I worked out and had quickly become an everyday, all-the-time occurrence.
Do I mark the date when I had that vertigo episode several years ago, the day when I nearly drowned in the shower – an occurrence that so many played off as nothing for so long? I’ll never forget the date of that because it happened on my parent’s anniversary – July 16.
Do I mark the date when I began (January 9, 2008) and ended (August 8, 2008) my first adventure with prednisone?
Or does any of this matter at all? Some days are good, some days are bad, and when you’re chronically ill, it’s important to mark everyday for the steps and missteps that are bound to happen along the way?
This all sends me in a tailspin, just thinking about it. I fear that eventually there will be far to many dates to write down, keep track of, let alone remember. Just writing this post fills me with emotion that I didn’t expect to feel.
It makes me yearn for the world that was September 10, 2007, just as I did when I was a sophomore in high school, thinking that if only the world could go back to September 10, 2001, everything would be fine. That if history could reverse itself by a single day, the events that devastated lives would never have to happen at all. But obviously, that’s not how the world works. I’m no longer jaded by the naïve thinking that I was when I was a sophomore in high school and the “real” September 11 happened.
And I know that I can’t go back to the way things used to be.
Monday, August 25, 2008
The Hospital As "Pick-Up Joint"
Every once in a while, I try to post something that is a little more light-hearted, not so doom and gloom, something on the lighter side of being chronically ill. It doesn’t always happen, but today, you are in luck.
The last few weeks of doctors’ appointments got me to thinking…
Yes, at first glance, this whole idea (as the title of the post suggests) might sound disgusting and repugnant.
But for a 20-something with several chronic illnesses who feels like she spends more time at doctors’ appointments and waiting for prescriptions than anywhere else, it makes intuitive sense. I see my doctors more than I see a lot of my friends.
Now, to answer the obvious question, it hasn’t happened yet. I haven’t dated anyone I’ve met at the hospital. I haven’t actually met anyone yet (in that sense)... But in reality, why not?
It’s not as if I go to doctors appointments with the express goal of meeting someone. And I certainly don’t go roaming the halls playing Florence Nightingale. But in the back of my mind, there certainly is a little bit of thought brewing that well… maybe it’s not such a bad idea.
And I’m not talking about dating my own doctors, because that is wrong… on so many levels. But doctors that I’m not a patient of aren’t off limits. And there aren’t too many other people my age that grace the rheumatology clinic, so chances are, we wouldn’t even have diseases in common, if I met a patient.
On the one hand, this post is meant to be humorous and satirical. On the other hand, I’m really serious. I know, though, that there are a lot of potential complications I’m leaving out (on purpose).
I mean, I don’t really go to bars because I can’t drink and the smoke bothers me. Basically, I go to class or work, go to coffee shops, and go home. So, if I’m not meeting people in any of those places, that only leaves one potential place.
And just think about it. A backdoor tryst with a young resident? It’s so soap opera-esque, it just might possibly happen.
Because let’s face it, I’m not getting any younger, and certainly, this body of mine isn’t either.
I know, this brings up bigger issues in my life, like the fact that I’m single and alone, and have no romantic prospects lined up for, well, let’s just say, the foreseeable future. But the point is, I’m single, alone, and chronically ill. And as we all know, chronic illness complicates just about everything.
The last few weeks of doctors’ appointments got me to thinking…
Yes, at first glance, this whole idea (as the title of the post suggests) might sound disgusting and repugnant.
But for a 20-something with several chronic illnesses who feels like she spends more time at doctors’ appointments and waiting for prescriptions than anywhere else, it makes intuitive sense. I see my doctors more than I see a lot of my friends.
Now, to answer the obvious question, it hasn’t happened yet. I haven’t dated anyone I’ve met at the hospital. I haven’t actually met anyone yet (in that sense)... But in reality, why not?
It’s not as if I go to doctors appointments with the express goal of meeting someone. And I certainly don’t go roaming the halls playing Florence Nightingale. But in the back of my mind, there certainly is a little bit of thought brewing that well… maybe it’s not such a bad idea.
And I’m not talking about dating my own doctors, because that is wrong… on so many levels. But doctors that I’m not a patient of aren’t off limits. And there aren’t too many other people my age that grace the rheumatology clinic, so chances are, we wouldn’t even have diseases in common, if I met a patient.
On the one hand, this post is meant to be humorous and satirical. On the other hand, I’m really serious. I know, though, that there are a lot of potential complications I’m leaving out (on purpose).
I mean, I don’t really go to bars because I can’t drink and the smoke bothers me. Basically, I go to class or work, go to coffee shops, and go home. So, if I’m not meeting people in any of those places, that only leaves one potential place.
And just think about it. A backdoor tryst with a young resident? It’s so soap opera-esque, it just might possibly happen.
Because let’s face it, I’m not getting any younger, and certainly, this body of mine isn’t either.
I know, this brings up bigger issues in my life, like the fact that I’m single and alone, and have no romantic prospects lined up for, well, let’s just say, the foreseeable future. But the point is, I’m single, alone, and chronically ill. And as we all know, chronic illness complicates just about everything.
Wednesday, August 20, 2008
Three Weeks, Four Doctors Appointments Later, and Three Pounds Lighter
Yeah, the title of this post pretty much sums up the last few crazy weeks.
Being off the CellCept, the itching got worse. So I went in to see Doctor C, who put me on Zyrtec and back on the CellCept and took me off the hydroxychloroquine, because apparently itching can “rarely” be caused by it. Since when has Doctor C known my body to do normal (as in not rare) things?
It was, as per usual, a very weird appointment. I felt like I was being tested, being asked trick questions.
Doctor C: How much prednisone are you on?
Me: None.
Doctor C: Right answer.
Uh, right answer yourself. I’ve only been telling Doctor C I wanted off since January! And what, was I going to get addicted to one milligram of prednisone? I don’t think so.
Doctor C inspected the areas of my body where there was sort of a rash, in connection with the itching. Then Doctor C says to me something like, Well what about the stuff on your face? Now granted, Doctor C is a rheumatologist, not a dermatologist. But shouldn’t even a rheumatologist know the difference between acne caused by prednisone and a rash?!? The comment was an insult to both of our intelligences.
Doctor C: Have you been exercising?
Yes, this seems like an innocuous question… when you actually know what it means!!! This question pretty much came out of the sky. Like it literally came from nowhere and had nothing to do with anything we were discussing. So really, I had no idea whether the point was that Doctor C thought I was exercising too much or too little. Why can’t doctors just ask normal questions? Why do I always feel like I’m being tested?
If it had anything to do with the fact that I lost three pounds in a month and a half, my guess is that my lack of appetite had something to do with that. When I say I’ve had very little appetite, what does that mean other than I haven’t been eating all that much? Hence why it was no surprise to me that I had lost weight since my last appointment.
The one good thing was that Doctor C remembered the issues I was having from work and asked me about them. I said that work was good because it was over. And we had a nice little laugh about that.
The last few weeks have been filled with the worst blood draws ever!!!
The muscle in my left arm and my right hand, just below the bottom knuckle of my ring finger were bruised to the point where I couldn’t touch the muscle or fully flex the fingers of my right hand. Of course, the bruises remain. And I can’t forget the blood draw from this morning, when there was blood going into the vial and running down my arm. It wasn’t so much the blood oozing out of my body that I was worried about as it was the khaki Capri pants I was wearing. Blood and khaki just don’t mix!
I’m not sure why it has been so difficult, but I’ve been told over these past weeks that I have stubborn veins and a very narrow nose. Meanwhile, I really wanted to tell these people that I wasn’t in the mood for their closed-minded comments.
After all this time, I guess I shouldn’t really be shocked by the tactlessness of anyone anymore, but the tactlessness of those in the medical profession continues to surprise me. Do they not realize that I’m aware of how poorly certain parts of my body work (or don’t). I don’t need to feel poorly about the ones I thought were working properly.
I have a filter, as is apparent from all of the things that I wanted to say during many of these conversations, but didn’t. But does no one else on the planet have a filter anymore?
I got to meet Doctor G for the first time, who took over for Doctor E (ENT). Doctor G was super nice. Plus, I don’t have to go back for another eight months! And today I saw Doctor D (Gastroenterologist), and if I’m lucky, I won’t have to go back ever again!
Being off the hydroxychloroquine has been a real bummer because my arthritis is flaring badly. But the itching is much improved, so what to do?
I’m off to Chi*town with the fam for a few days. I’m sure you’ll be glad to have a break from me, as I’m back to my daily postings! Don’t worry, more when I return!
Being off the CellCept, the itching got worse. So I went in to see Doctor C, who put me on Zyrtec and back on the CellCept and took me off the hydroxychloroquine, because apparently itching can “rarely” be caused by it. Since when has Doctor C known my body to do normal (as in not rare) things?
It was, as per usual, a very weird appointment. I felt like I was being tested, being asked trick questions.
Doctor C: How much prednisone are you on?
Me: None.
Doctor C: Right answer.
Uh, right answer yourself. I’ve only been telling Doctor C I wanted off since January! And what, was I going to get addicted to one milligram of prednisone? I don’t think so.
Doctor C inspected the areas of my body where there was sort of a rash, in connection with the itching. Then Doctor C says to me something like, Well what about the stuff on your face? Now granted, Doctor C is a rheumatologist, not a dermatologist. But shouldn’t even a rheumatologist know the difference between acne caused by prednisone and a rash?!? The comment was an insult to both of our intelligences.
Doctor C: Have you been exercising?
Yes, this seems like an innocuous question… when you actually know what it means!!! This question pretty much came out of the sky. Like it literally came from nowhere and had nothing to do with anything we were discussing. So really, I had no idea whether the point was that Doctor C thought I was exercising too much or too little. Why can’t doctors just ask normal questions? Why do I always feel like I’m being tested?
If it had anything to do with the fact that I lost three pounds in a month and a half, my guess is that my lack of appetite had something to do with that. When I say I’ve had very little appetite, what does that mean other than I haven’t been eating all that much? Hence why it was no surprise to me that I had lost weight since my last appointment.
The one good thing was that Doctor C remembered the issues I was having from work and asked me about them. I said that work was good because it was over. And we had a nice little laugh about that.
The last few weeks have been filled with the worst blood draws ever!!!
The muscle in my left arm and my right hand, just below the bottom knuckle of my ring finger were bruised to the point where I couldn’t touch the muscle or fully flex the fingers of my right hand. Of course, the bruises remain. And I can’t forget the blood draw from this morning, when there was blood going into the vial and running down my arm. It wasn’t so much the blood oozing out of my body that I was worried about as it was the khaki Capri pants I was wearing. Blood and khaki just don’t mix!
I’m not sure why it has been so difficult, but I’ve been told over these past weeks that I have stubborn veins and a very narrow nose. Meanwhile, I really wanted to tell these people that I wasn’t in the mood for their closed-minded comments.
After all this time, I guess I shouldn’t really be shocked by the tactlessness of anyone anymore, but the tactlessness of those in the medical profession continues to surprise me. Do they not realize that I’m aware of how poorly certain parts of my body work (or don’t). I don’t need to feel poorly about the ones I thought were working properly.
I have a filter, as is apparent from all of the things that I wanted to say during many of these conversations, but didn’t. But does no one else on the planet have a filter anymore?
I got to meet Doctor G for the first time, who took over for Doctor E (ENT). Doctor G was super nice. Plus, I don’t have to go back for another eight months! And today I saw Doctor D (Gastroenterologist), and if I’m lucky, I won’t have to go back ever again!
Being off the hydroxychloroquine has been a real bummer because my arthritis is flaring badly. But the itching is much improved, so what to do?
I’m off to Chi*town with the fam for a few days. I’m sure you’ll be glad to have a break from me, as I’m back to my daily postings! Don’t worry, more when I return!
Monday, August 18, 2008
The Olympic Dream That Will Never Be
Okay, so I’m going to admit right off the bat that this was kind of a cheap trick to suck you into this post because of the title.
Because my friends that are reading this are probably thinking, what Olympic dream? This girl’s athletic?
But seriously, this post does have to do with the Olympics. Just… not in the way you may think. As I’ve been watching the Olympics over the past week and a half, I’ve been stuck wondering why it is that we only really want the things that we can’t have?
Yes, I’ve gotten caught up in Michael Phelps mania. I’m allowed… I can say that we went to the same school. I’ve also heard so many times that Dara Torres is 41 years old. If they mention her age again, I might just punch my TV. Although the way my hand looks from my blood draw last week, you’d think I already have.
But aside from all that, I’ve also gotten caught up in the fact that with all of the wonderful, inspiring stories of the games, there isn’t a single one of someone that involves chronic illness. I mean, there are a few stories of people who have or had cancer, but you don’t hear stories about someone with lupus or rheumatoid arthritis competing at this year’s Olympic games.
Why? Well, based on the way I’ve felt lately, I’m not sure it’s humanly possible. But apparently there are Olympic athletes currently competing that have such chronic ailments as diabetes and irritable bowel syndrome. But these aren’t, ironically, the stories you hear about. And it’s funny. This year’s Olympics aren’t a “science free” event. There has been plenty of talk about steroids, gene doping, and air quality issues.
And I know, these stellar athletes aren’t immune to disease, and many of them will fall prey to them eventually. I also know that in the back of my mind, I can’t help thinking that the wear and tear they are forcing on their bodies now, they will likely be paying for later.
But it is frustrating that, in an event that is termed, “One World, One Dream,” I certainly don’t feel like I have any part in that. And I am sure there are many of you out there who have watched with a mix of wonder, awe, and sadness.
You know, before I got sick, I couldn’t really care less about whether I was any kind of caliber of athlete. It just wasn’t something that was all that important to me. But now, now that there’s never going to be a chance that I will be a stellar athlete, it is kind of disappointing.
Now, don’t get me wrong. Being a good athlete isn’t everything (although it just might be in American society and would help explain my friends' ever-annoying obsession with working out). But chronically ill people are doing amazing things everyday. We are fighting for recognition of things that very few other people care about or feel they have a stake in. And where is the recognition for that?
Friday, August 15, 2008
"First Do No Harm"
This summer, I discovered and got addicted to the TV show, “Nip/Tuck.” A phrase that was thrown around often on the show was “first do no harm,” which was cited to be the cardinal rule of the Hippocratic oath.
I had intended to write a post about how hypocritical the Hippocratic oath is, only to find out through further research on the subject that “first do no harm” does not in fact come directly from the Hippocratic oath, but is merely “adapted” from it.
Like so much in the medical profession, this phrase, too, is a myth…
So what does it actually mean, “first do no harm,” and what is its significance for the chronic illness, if not the entire, medical community? On paper, it sounds great. But as many of us with chronic illnesses have learned, most medical interventions come equally with both risks and rewards - as I have thought about a lot lately, sometimes the medication is worse than the symptoms it was prescribed to alleviate.
For me, “first do no harm” makes me think of the unintended harm that a patient can be caused. I am drawn to the advice on all of my prescription pamphlets:
“Remember that your doctor has prescribed this medication because the benefit to you is greater than the risk of side effects.”
I wonder if, both the above warning and the adage, “first do no harm”, apply to subconscious emotional harm, as well as physical harm. What if prescribed medications, the entire chronic illness experience for that matter, change the patient’s self image, and/or brings out feelings and emotions that the patient never knew existed and is not fully able to deal with?
What if, in the process of trying to alleviate symptoms, the patient is caused psychological harm? At what point, if ever, is it the responsibility of the doctor to take note of these changes and respond to them? And at what point is it the patient’s responsibility to just “suck it up”?
There is, of course, a balancing act here. And it is one that is very subjective. There are risks that everyone probably agrees on, like taking medications that greatly increase ones risk of cancer. But what about say, gaining weight from being on prednisone. That might not seem too devastating to a middle-aged, male doctor, but might seem quite bothersome to a teenaged, female patient, even when the drug alleviates some of the symptoms the patient is being treated for.
In the chronic illness experience, then, is it possible, no matter how good the doctors or the medication, to escape unscathed, physically and emotionally? And what does that even mean in the case of chronic illness?
The emotional toll that chronic illness can have, as I have experienced first hand and battle on a daily basis, is really the unseen demon – it’s at the core of what makes me question the utility of “first do no harm”. The physical and the emotional are deeply connected. Even if the physical aspect is going well, the emotional parts can derail everything.
I also wonder if “first do no harm” even applies to the patient at all. Has my doctor ever asked me how I feel mentally, emotionally? When I had to go have steroid infusions for three days, did my doctor ever ask how they made me feel? Physically, yes. Emotionally, no. The physical and the mental work in tandem, but it is the physical that gets all the attention. I’m not in too much pain so that must mean that I am feeling great mentally, as well.
Or are our doctors just trying to protect themselves from harm? I know my rheumatologist is detached because rheumatology is a medical specialty in which good news is rarely given. Remissions don’t last forever. Cures rarely exist. Pain is often a daily experience. And I understand this emotional detachment and have come to expect and accept it. If it didn’t exist, my doctor would probably be a pretty depressed person. I also understand that being overly emotionally involved with a patient can cloud judgment.
But just because the doctor remains emotionally detached, doesn’t mean that the patient does.
I think sometimes our doctors forget that the daily grind of not feeling well, of pushing ourselves to do things that used to feel so easy, of just showing up for doctors’ appointments, is difficult physically, but also emotionally. Doctors can see abnormalities on x-rays and lab reports, physical manifestations in or on the body. But what they don’t see, and often don’t attempt to look for is the emotional pain that many of us suffer.
Chronic illness is neither easy for patients nor doctors. It is not sexy, glamorous, or fun. It is what it is. However, this failure to look at the emotional, as well as the physical, manifestations of disease seems to me to be a gulf in the doctor-patient relationship that needs to be closed. In order for “first do no harm” to mean anything, the patient as a whole person needs to be seen by the doctor.
I had intended to write a post about how hypocritical the Hippocratic oath is, only to find out through further research on the subject that “first do no harm” does not in fact come directly from the Hippocratic oath, but is merely “adapted” from it.
Like so much in the medical profession, this phrase, too, is a myth…
So what does it actually mean, “first do no harm,” and what is its significance for the chronic illness, if not the entire, medical community? On paper, it sounds great. But as many of us with chronic illnesses have learned, most medical interventions come equally with both risks and rewards - as I have thought about a lot lately, sometimes the medication is worse than the symptoms it was prescribed to alleviate.
For me, “first do no harm” makes me think of the unintended harm that a patient can be caused. I am drawn to the advice on all of my prescription pamphlets:
“Remember that your doctor has prescribed this medication because the benefit to you is greater than the risk of side effects.”
I wonder if, both the above warning and the adage, “first do no harm”, apply to subconscious emotional harm, as well as physical harm. What if prescribed medications, the entire chronic illness experience for that matter, change the patient’s self image, and/or brings out feelings and emotions that the patient never knew existed and is not fully able to deal with?
What if, in the process of trying to alleviate symptoms, the patient is caused psychological harm? At what point, if ever, is it the responsibility of the doctor to take note of these changes and respond to them? And at what point is it the patient’s responsibility to just “suck it up”?
There is, of course, a balancing act here. And it is one that is very subjective. There are risks that everyone probably agrees on, like taking medications that greatly increase ones risk of cancer. But what about say, gaining weight from being on prednisone. That might not seem too devastating to a middle-aged, male doctor, but might seem quite bothersome to a teenaged, female patient, even when the drug alleviates some of the symptoms the patient is being treated for.
In the chronic illness experience, then, is it possible, no matter how good the doctors or the medication, to escape unscathed, physically and emotionally? And what does that even mean in the case of chronic illness?
The emotional toll that chronic illness can have, as I have experienced first hand and battle on a daily basis, is really the unseen demon – it’s at the core of what makes me question the utility of “first do no harm”. The physical and the emotional are deeply connected. Even if the physical aspect is going well, the emotional parts can derail everything.
I also wonder if “first do no harm” even applies to the patient at all. Has my doctor ever asked me how I feel mentally, emotionally? When I had to go have steroid infusions for three days, did my doctor ever ask how they made me feel? Physically, yes. Emotionally, no. The physical and the mental work in tandem, but it is the physical that gets all the attention. I’m not in too much pain so that must mean that I am feeling great mentally, as well.
Or are our doctors just trying to protect themselves from harm? I know my rheumatologist is detached because rheumatology is a medical specialty in which good news is rarely given. Remissions don’t last forever. Cures rarely exist. Pain is often a daily experience. And I understand this emotional detachment and have come to expect and accept it. If it didn’t exist, my doctor would probably be a pretty depressed person. I also understand that being overly emotionally involved with a patient can cloud judgment.
But just because the doctor remains emotionally detached, doesn’t mean that the patient does.
I think sometimes our doctors forget that the daily grind of not feeling well, of pushing ourselves to do things that used to feel so easy, of just showing up for doctors’ appointments, is difficult physically, but also emotionally. Doctors can see abnormalities on x-rays and lab reports, physical manifestations in or on the body. But what they don’t see, and often don’t attempt to look for is the emotional pain that many of us suffer.
Chronic illness is neither easy for patients nor doctors. It is not sexy, glamorous, or fun. It is what it is. However, this failure to look at the emotional, as well as the physical, manifestations of disease seems to me to be a gulf in the doctor-patient relationship that needs to be closed. In order for “first do no harm” to mean anything, the patient as a whole person needs to be seen by the doctor.
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