Today is my friend E’s birthday.
E is having a rough go of it right now and feeling particularly disillusioned by life. I just wanted to let E know that you are in my thoughts and everything will get better soon!
E is not a fellow member of the chronic illness world (thank goodness!), but has been a great friend to me and has supported me through good times and bad!
Here’s to you E, and a wonderful birthday!
Tuesday, June 10, 2008
What I Want People To Understand
I want people to understand that every aspect of my life is work.
Every move I make takes calculating.
If I do everything on my list today, I will pay tomorrow, or maybe even before tomorrow.
If I put some things off, I will have more energy today.
This is the constant calculation that runs through my head.
I’ve learned that at least for right now, cleaning and working out cannot take place in the same day. These two activities cause me to expend far too much energy. Grocery shopping has to be left on its own. So does walking up and down four flights of stairs three times to do my laundry. There are other activities as well…
Working out is something that might have to be taken off the list altogether. I mean, I walk everywhere, anyway. And while this would present its own set of issues, it may be something I have to consider doing, or rather not doing, for a while. At least as long as I’m putting in 40 hours a week at my job.
Once you have crossed the threshold into illness, there is no turning back.
It gets in there and it messes with your DNA. It flips a switch and causes an unstoppable chain reaction, a collision of body and illness that you never see coming.
And this can happen anytime, anywhere. A lot of us will say that we just woke up one morning and “felt different.” But the truth is, most of us can think back to signs weeks, months, and years earlier, when we thought something might not be “quite” right. But in the absence of any other signs, there was always a cover, always something it could be attributed to. Something that made it make sense.
It’s not just the pain of my disease that I seek understanding about. It is also the frustration that I feel. But no one who hasn’t had over 20 doctors appointments in the last eight months (not counting routine dentist, eye exam, etc. – if those can even be considered routine anymore), four major tests/procedures performed, and a host of blood work, can begin to understand the frustration that ensues when trying to keep life seemingly normal falls apart.
Making other people understand means having them accept who we are, illnesses and all. It means occasionally cutting us some slack, which for some reason, people are, as of late, finding it incredibly hard to do.
To clarify, this post comes in response to three things:
1. I am being pushed at work to take a class. And I’m seriously worried about it. I don’t know how else to explain it to the people involved, so I’ve resigned myself to quiet resignation. I’ve talked about this before. The class is one week long. It would be during work hours, but there is homework involved. This means that I would actually have to make some use of myself during the hours after work, when I usually make a half-hearted attempt to eat dinner and then spend the rest of the night on the couch – because I’m too exhausted to do anything else.
2. My next appointment with my rheumatologist was rescheduled. And this doesn’t mean that I had any say in the new appointment time. This means that I received a letter in the mail today telling me that my appointment had been cancelled and rescheduled and it informed me of the new date and time. Well the thing is, I will be in school, I will be teaching, and I don’t know all of the specifics of that schedule yet. I will have the part of my life that I want to worry about, to worry about. But because it takes so long to get these appointments in the first place, I think I am just going to have to sit back and deal with whatever “chaos” ensues. But I wonder if having no regard for my time is supposed to make me feel more like a person and less like a numbered patient. If so, not the way to go!
3. The general lack of understanding that seems to be a continuing theme in my life.
Every move I make takes calculating.
If I do everything on my list today, I will pay tomorrow, or maybe even before tomorrow.
If I put some things off, I will have more energy today.
This is the constant calculation that runs through my head.
I’ve learned that at least for right now, cleaning and working out cannot take place in the same day. These two activities cause me to expend far too much energy. Grocery shopping has to be left on its own. So does walking up and down four flights of stairs three times to do my laundry. There are other activities as well…
Working out is something that might have to be taken off the list altogether. I mean, I walk everywhere, anyway. And while this would present its own set of issues, it may be something I have to consider doing, or rather not doing, for a while. At least as long as I’m putting in 40 hours a week at my job.
Once you have crossed the threshold into illness, there is no turning back.
It gets in there and it messes with your DNA. It flips a switch and causes an unstoppable chain reaction, a collision of body and illness that you never see coming.
And this can happen anytime, anywhere. A lot of us will say that we just woke up one morning and “felt different.” But the truth is, most of us can think back to signs weeks, months, and years earlier, when we thought something might not be “quite” right. But in the absence of any other signs, there was always a cover, always something it could be attributed to. Something that made it make sense.
It’s not just the pain of my disease that I seek understanding about. It is also the frustration that I feel. But no one who hasn’t had over 20 doctors appointments in the last eight months (not counting routine dentist, eye exam, etc. – if those can even be considered routine anymore), four major tests/procedures performed, and a host of blood work, can begin to understand the frustration that ensues when trying to keep life seemingly normal falls apart.
Making other people understand means having them accept who we are, illnesses and all. It means occasionally cutting us some slack, which for some reason, people are, as of late, finding it incredibly hard to do.
To clarify, this post comes in response to three things:
1. I am being pushed at work to take a class. And I’m seriously worried about it. I don’t know how else to explain it to the people involved, so I’ve resigned myself to quiet resignation. I’ve talked about this before. The class is one week long. It would be during work hours, but there is homework involved. This means that I would actually have to make some use of myself during the hours after work, when I usually make a half-hearted attempt to eat dinner and then spend the rest of the night on the couch – because I’m too exhausted to do anything else.
2. My next appointment with my rheumatologist was rescheduled. And this doesn’t mean that I had any say in the new appointment time. This means that I received a letter in the mail today telling me that my appointment had been cancelled and rescheduled and it informed me of the new date and time. Well the thing is, I will be in school, I will be teaching, and I don’t know all of the specifics of that schedule yet. I will have the part of my life that I want to worry about, to worry about. But because it takes so long to get these appointments in the first place, I think I am just going to have to sit back and deal with whatever “chaos” ensues. But I wonder if having no regard for my time is supposed to make me feel more like a person and less like a numbered patient. If so, not the way to go!
3. The general lack of understanding that seems to be a continuing theme in my life.
The Inside Doesn't Match The Outside
The other day as I was making my way down the stairs of my third floor walk-up, I glanced out the window.The sun was shining and it was truly a beautiful day.
What a sham, I thought!?!
The inside really doesn’t match the outside.
I was trying to make my way down the stairs, but my legs didn’t want to cooperate. Every step down the stairs was like a hammer hit to my knees, making me feel like at any moment, my legs were going to shatter into a million pieces.
I know, a third floor walk-up, not the smartest move for a person like me. But I moved into my apartment (not so) long before I realized what was happening to me. And I’m far too exhausted at this point to move.
But, you know, this disjunction occurs on a daily basis.
On the outside, I appear to be vibrant, young, and healthy. But on the inside, I feel old, broken, damaged.
The inside doesn’t match the outside.
What a sham, I thought!?!
The inside really doesn’t match the outside.
I was trying to make my way down the stairs, but my legs didn’t want to cooperate. Every step down the stairs was like a hammer hit to my knees, making me feel like at any moment, my legs were going to shatter into a million pieces.
I know, a third floor walk-up, not the smartest move for a person like me. But I moved into my apartment (not so) long before I realized what was happening to me. And I’m far too exhausted at this point to move.
But, you know, this disjunction occurs on a daily basis.
On the outside, I appear to be vibrant, young, and healthy. But on the inside, I feel old, broken, damaged.
The inside doesn’t match the outside.
Do We Really Fight Diseases?
I know that the concept of “fighting” diseases is merely a figure of speech.
But it is one that comes to define personality types in the world of illness.
Either you’re a fighter or you’re not.
But are we fighting disease?
Or are we really fighting ourselves?
I think many in the chronic illness world would agree with me that we don’t much often feel in control of our own bodies.
I don’t feel very much like I’m fighting a disease. I swallow down medication every morning and evening, at exact times, an exacting regimen. But that is not me fighting. That is the medication working. That is my doctor telling me what to do.
To me, fighting would be to put my foot down, not take the medication, and attempt to move on with my life.
But I have a feeling that I would prove the lesser opponent in that battle and I would not win.
But right now, I’m fighting the battle to survive, but that’s not really a fight, it’s reality.
But it is one that comes to define personality types in the world of illness.
Either you’re a fighter or you’re not.
But are we fighting disease?
Or are we really fighting ourselves?
I think many in the chronic illness world would agree with me that we don’t much often feel in control of our own bodies.
I don’t feel very much like I’m fighting a disease. I swallow down medication every morning and evening, at exact times, an exacting regimen. But that is not me fighting. That is the medication working. That is my doctor telling me what to do.
To me, fighting would be to put my foot down, not take the medication, and attempt to move on with my life.
But I have a feeling that I would prove the lesser opponent in that battle and I would not win.
But right now, I’m fighting the battle to survive, but that’s not really a fight, it’s reality.
Two Worlds
Essentially, those of us who experience chronic illness are caught between two worlds.
We are part of the world of the healthy and a part of the world of the sick.
For some, it is easier to inhabit the world of the healthy, for others they only inhabit that world in appearance only. And yet for others, they have been forever robbed of their chance to live, but even for a moment, in that world.
And most all of us join the world of the sick unwillingly. And one day we find ourselves fitting in better with “that” crowd. They relate to us. They understand. They are our lives personified.
We crave to be part of the world of the healthy, but we know we fall short on expectation.
And when we feel we don’t fit in either world, it is often easier to inauspiciously reside in our own heads.
It is loneliness, at its most painful and most useful.
We are part of the world of the healthy and a part of the world of the sick.
For some, it is easier to inhabit the world of the healthy, for others they only inhabit that world in appearance only. And yet for others, they have been forever robbed of their chance to live, but even for a moment, in that world.
And most all of us join the world of the sick unwillingly. And one day we find ourselves fitting in better with “that” crowd. They relate to us. They understand. They are our lives personified.
We crave to be part of the world of the healthy, but we know we fall short on expectation.
And when we feel we don’t fit in either world, it is often easier to inauspiciously reside in our own heads.
It is loneliness, at its most painful and most useful.
Monday, June 9, 2008
"Coming Out"
I was reading an article entitled, “Coming Out: Considering the Closet of Illness” when Rosalind sent me the link to the interview.
Ironically, I hadn’t known what she was going to title the post.
If you have access to articles databases and stuff, you should check this out! It is very insightful. I happened to stumble upon this article at work, while I was searching for articles for a project I’m working on, on chronic illness, social support, and the life course.
I’ve provided the reference below.
The article discusses something that I’ve been thinking about a lot lately.
Disclosure.
The harm of disclosing the fact that you have an invisible disease is that the person or people you are telling probably do not realize that anything is wrong with you and this can lead to them viewing you differently.Obviously, you run this risk any time, but there is more likely to be a divided reaction when this disclosure is completely unexpected.
I know the way I’ve felt over the past few weeks, having to tell near-strangers about my illnesses. It is both a blessing and a curse. It is a blessing when you disclose to someone who attempts to understand. It feels like a weight has been lifted off of your shoulders. It is also a curse because you are baring yourself so completely to people who would, under different circumstances, not necessarily deserve such outright honesty.
I am a heterosexual woman, so I have never had to deal with the experience of “coming out” as homosexual. But I think the metaphor of likening the disclosure of ones illness to others to the admittance of homosexuality is a profound one.
Both deal with a profound sense of putting oneself on the line with the possibility of outright rejection.
I know that for some, even talking about their illness in the virtual world would be unthinkable. For me, though, it seems to be the release I need, that I can’t often get “in real life.” It’s a difficult distinction for me to explain.
But if you reject me for my illness, you reject all of me. Only recently have I become brave enough to stand up and say that this is for real. And that if being true to myself means disclosing, even when I run the risk of rejection, so be it. If I can’t accept what’s happening, no one else will be able to.
It is truly sad for any group of people that goes through something like this that we live in such a world where difference is so blatantly unacceptable.
*****
(Myers, Kimberly R. “Coming Out: Considering the Closet of Illness.” Journal of Medical Humanities 25(4): 255-270.)
Ironically, I hadn’t known what she was going to title the post.
If you have access to articles databases and stuff, you should check this out! It is very insightful. I happened to stumble upon this article at work, while I was searching for articles for a project I’m working on, on chronic illness, social support, and the life course.
I’ve provided the reference below.
The article discusses something that I’ve been thinking about a lot lately.
Disclosure.
The harm of disclosing the fact that you have an invisible disease is that the person or people you are telling probably do not realize that anything is wrong with you and this can lead to them viewing you differently.Obviously, you run this risk any time, but there is more likely to be a divided reaction when this disclosure is completely unexpected.
I know the way I’ve felt over the past few weeks, having to tell near-strangers about my illnesses. It is both a blessing and a curse. It is a blessing when you disclose to someone who attempts to understand. It feels like a weight has been lifted off of your shoulders. It is also a curse because you are baring yourself so completely to people who would, under different circumstances, not necessarily deserve such outright honesty.
I am a heterosexual woman, so I have never had to deal with the experience of “coming out” as homosexual. But I think the metaphor of likening the disclosure of ones illness to others to the admittance of homosexuality is a profound one.
Both deal with a profound sense of putting oneself on the line with the possibility of outright rejection.
I know that for some, even talking about their illness in the virtual world would be unthinkable. For me, though, it seems to be the release I need, that I can’t often get “in real life.” It’s a difficult distinction for me to explain.
But if you reject me for my illness, you reject all of me. Only recently have I become brave enough to stand up and say that this is for real. And that if being true to myself means disclosing, even when I run the risk of rejection, so be it. If I can’t accept what’s happening, no one else will be able to.
It is truly sad for any group of people that goes through something like this that we live in such a world where difference is so blatantly unacceptable.
*****
(Myers, Kimberly R. “Coming Out: Considering the Closet of Illness.” Journal of Medical Humanities 25(4): 255-270.)
"Working With Chronic Illness" Interview
I did an interview with Rosalind Joffe for her blog http://workingwithchronicillness.com/. You can read the interview here:
http://workingwithchronicillness.com/2008/06/09/coming-out-into-the-spotlight/
The post is entitled, “Coming Out – into the spotlight.”
Thanks, Rosalind, for letting me share my story with you and your readers!
http://workingwithchronicillness.com/2008/06/09/coming-out-into-the-spotlight/
The post is entitled, “Coming Out – into the spotlight.”
Thanks, Rosalind, for letting me share my story with you and your readers!
"You Gotta Be"
“You Gotta Be” by Des’ree:
Listen as your day unfolds
Challenge what the future holds
Try and keep your head up to the sky
Lovers, they may cause you tears
Go ahead release your fears
Stand up and be counted
Don’t be ashamed to cry
You gotta be
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day
Herald what your mother said
Readin’ the books your father
to solve the puzzles in your own sweet time
Some may have more cash than you
Others take a different view
My oh my, heh, hey
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day
Time asks no questions, it goes on without you
Leaving you behind if you can’t stand the pace
The world keeps on spinning
You can’t stop it, if you try to
This time it’s danger staring you in the face
Oh, oh, oh,
Remember
Listen as your day unfolds
Challenge what the future holds
Try and keep your head up to the sky
Lovers, they may cause you tears
Go ahead release your fears
My oh my, heh, hey, hey
You gotta be
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day
From the album, “Endangered Species”
Man, I am such a child of the late-80s and early-90s.
I’ve always loved this song, for some reason, and now it holds new meaning for me.
Listen as your day unfolds
Challenge what the future holds
Try and keep your head up to the sky
Lovers, they may cause you tears
Go ahead release your fears
Stand up and be counted
Don’t be ashamed to cry
You gotta be
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day
Herald what your mother said
Readin’ the books your father
to solve the puzzles in your own sweet time
Some may have more cash than you
Others take a different view
My oh my, heh, hey
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day
Time asks no questions, it goes on without you
Leaving you behind if you can’t stand the pace
The world keeps on spinning
You can’t stop it, if you try to
This time it’s danger staring you in the face
Oh, oh, oh,
Remember
Listen as your day unfolds
Challenge what the future holds
Try and keep your head up to the sky
Lovers, they may cause you tears
Go ahead release your fears
My oh my, heh, hey, hey
You gotta be
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day
You gotta be bad, you gotta be bold
You gotta be wiser, you gotta be hard
You gotta be tough, you gotta be stronger
You gotta be cool, you gotta be calm
You gotta stay together
All I know, all I know, love will save the day
From the album, “Endangered Species”
*****
Man, I am such a child of the late-80s and early-90s.
I’ve always loved this song, for some reason, and now it holds new meaning for me.
A Word On Invisibility
There is not a day that goes by that I don’t feel invisible.
Before, I think this feeling could be attributed to low self-esteem. But now, it really is about being invisible. It’s about being in front of people and them not really seeing who I am.
I think when people think of arthritis they think of something out of my nightmare from last week. They think of someone who is visibly disabled, with twisted appendages that no longer serve their intended purpose.
And people here about lupus a lot. It’s a condition thrown around on TV medical dramas all the time.
Every time I talk to one of my friends, that person tells me that lupus is the disease that “House” diagnoses every patient with at first. Yeah, every patient comes in with fatigue and muscle pain. What a joke. If lupus was actually that common, maybe people would actually understand it.
Before, I think this feeling could be attributed to low self-esteem. But now, it really is about being invisible. It’s about being in front of people and them not really seeing who I am.
I think when people think of arthritis they think of something out of my nightmare from last week. They think of someone who is visibly disabled, with twisted appendages that no longer serve their intended purpose.
And people here about lupus a lot. It’s a condition thrown around on TV medical dramas all the time.
Every time I talk to one of my friends, that person tells me that lupus is the disease that “House” diagnoses every patient with at first. Yeah, every patient comes in with fatigue and muscle pain. What a joke. If lupus was actually that common, maybe people would actually understand it.
Saturday, June 7, 2008
(Un)Reality
You know, thinking back, there really hasn’t been an official diagnosis, literally or figuratively.
I mean, every time my illnesses have been presented to me (by Doctor C), it has been in a very casual manner, like talking about the newest movie or something. Well, not exactly, but you know what I mean.
I’ve never gotten that stern we have to talk type of conversation. Only blurred explanations, a lot of which I’ll admit that I don’t understand. T Cells and B Cells, DNA, and foreign invaders (oh my!). I suppose it’s stuff pretty common to a conversation about the immune system, but it’s a lot of stuff I thought I only needed to know if I was considering a career in medicine. And there is definitely no mention of statistics. Give me percentages, something that I might understand. What are my chances here, doc? Through me a bone, would you? But we don’t do things by the numbers. I’m not actually sure how we do them.
Your immune system has gone haywire. But this medication will swoop in and defeat your overactive T Cells.
It’s like the medical version of a comic book superhero tale.
And apparently the doctors and the medicine are the heroes in this story, not me.
I am supposed to remain a passive actor while my body, the doctors, and the medication, not I, do the dirty work.
Well, I think it’s about time that I faced reality. I’m starting to realize that it has been so hard for me to do because in some ways, I don’t think Doctor C has really been able to face reality, either. When I go to my appointments, Doctor C is only seeing an incredibly small snippet of what my life is like. And I think telling me the whole truth would mean admitting that modern medicine isn’t perfect and that there are some things we aren’t going to be able to fix. But doctors would never admit to that, would they?
But that’s what I need. I need someone to be honest with me and tell me that my life is not going to be perfect, but it’s going to be livable. You know, I forgot about fixating on perfect months ago. That’s not what I’m asking for. But I need to know. Otherwise I am led to have unrealistic expectations about my doctors’ (and modern medicines’) capabilities.
The other day when I was really feeling bad, I accused my medication of not working. But the thing is, I don’t know if that’s really true. It might be doing the best that it can. Heck, all I can expect of myself everyday is to do the best I can. That’s all we can ever expect of anyone…
But what if our best isn’t good enough?
I mean, every time my illnesses have been presented to me (by Doctor C), it has been in a very casual manner, like talking about the newest movie or something. Well, not exactly, but you know what I mean.
I’ve never gotten that stern we have to talk type of conversation. Only blurred explanations, a lot of which I’ll admit that I don’t understand. T Cells and B Cells, DNA, and foreign invaders (oh my!). I suppose it’s stuff pretty common to a conversation about the immune system, but it’s a lot of stuff I thought I only needed to know if I was considering a career in medicine. And there is definitely no mention of statistics. Give me percentages, something that I might understand. What are my chances here, doc? Through me a bone, would you? But we don’t do things by the numbers. I’m not actually sure how we do them.
Your immune system has gone haywire. But this medication will swoop in and defeat your overactive T Cells.
It’s like the medical version of a comic book superhero tale.
And apparently the doctors and the medicine are the heroes in this story, not me.
I am supposed to remain a passive actor while my body, the doctors, and the medication, not I, do the dirty work.
Well, I think it’s about time that I faced reality. I’m starting to realize that it has been so hard for me to do because in some ways, I don’t think Doctor C has really been able to face reality, either. When I go to my appointments, Doctor C is only seeing an incredibly small snippet of what my life is like. And I think telling me the whole truth would mean admitting that modern medicine isn’t perfect and that there are some things we aren’t going to be able to fix. But doctors would never admit to that, would they?
But that’s what I need. I need someone to be honest with me and tell me that my life is not going to be perfect, but it’s going to be livable. You know, I forgot about fixating on perfect months ago. That’s not what I’m asking for. But I need to know. Otherwise I am led to have unrealistic expectations about my doctors’ (and modern medicines’) capabilities.
The other day when I was really feeling bad, I accused my medication of not working. But the thing is, I don’t know if that’s really true. It might be doing the best that it can. Heck, all I can expect of myself everyday is to do the best I can. That’s all we can ever expect of anyone…
But what if our best isn’t good enough?
Peer Pressure, Sort Of
Lately I’ve been hearing about all the great things my friends are doing – running marathons, getting new jobs, moving to new cities, writing articles and books - and then there’s me, trying simply to survive.
I used to run circles around my competition. Now I fear that they run circles around me.
I’ve always been a competitive person, mostly with myself. Always pushing myself harder, faster, and farther. But I can’t do that anymore. Well, I can try, but I have a feeling that the outcome won’t be a very good one.
And it’s not exactly that I can’t, it’s that I don’t have the energy to.
The worst part is not necessarily that I can’t go out and run a marathon tomorrow like some of my friends can. It’s that I’m jealous of their ability and frustrated with my inability.
Maybe this is all some strange sort of mind game. If you asked the people around me if they noticed anything, they’d probably say no, except that I’ve told them about what has been going on.
So, is this just self-imposed doubt I’m suffering from, or am I really behind the curve?
Or, do I have to throw “that” curve out the window altogether and figure out my own? Forge my own path, a shortcut through a never-ending maze. Just like the fact that I was on my own growth chart pretty much my whole life because I was born severely premature. But that’s a whole other story.
I used to run circles around my competition. Now I fear that they run circles around me.
I’ve always been a competitive person, mostly with myself. Always pushing myself harder, faster, and farther. But I can’t do that anymore. Well, I can try, but I have a feeling that the outcome won’t be a very good one.
And it’s not exactly that I can’t, it’s that I don’t have the energy to.
The worst part is not necessarily that I can’t go out and run a marathon tomorrow like some of my friends can. It’s that I’m jealous of their ability and frustrated with my inability.
Maybe this is all some strange sort of mind game. If you asked the people around me if they noticed anything, they’d probably say no, except that I’ve told them about what has been going on.
So, is this just self-imposed doubt I’m suffering from, or am I really behind the curve?
Or, do I have to throw “that” curve out the window altogether and figure out my own? Forge my own path, a shortcut through a never-ending maze. Just like the fact that I was on my own growth chart pretty much my whole life because I was born severely premature. But that’s a whole other story.
"Falling Slowly"
“Falling Slowly” by Glen Hansard:
“I don’t know you
But I want you
All the more for that
Words fall through me
And always fool me
nd I can’t react
And games that never amount
To more than they’re meant
Will play themselves out
Take this sinking boat and point it home
We’ve still got time
Raise your hopeful voice you have a choice
You’ve made it now
Falling slowly, eyes that know me
And I can’t go back
Moods that take me and erase me
And I’m painted black
You have suffered enough
And warred with yourself
It’s time that you won
Take this sinking boat and point it home
We’ve still got time
Raise your hopeful voice you had a choice
You’ve made it now
Falling slowly sing your melody
I’ll sing along”
From the soundtrack of the movie, “Once”
I think this song is absolutely beautiful, the words and the music. I’m especially struck by the second to last two verses.
“I don’t know you
But I want you
All the more for that
Words fall through me
And always fool me
nd I can’t react
And games that never amount
To more than they’re meant
Will play themselves out
Take this sinking boat and point it home
We’ve still got time
Raise your hopeful voice you have a choice
You’ve made it now
Falling slowly, eyes that know me
And I can’t go back
Moods that take me and erase me
And I’m painted black
You have suffered enough
And warred with yourself
It’s time that you won
Take this sinking boat and point it home
We’ve still got time
Raise your hopeful voice you had a choice
You’ve made it now
Falling slowly sing your melody
I’ll sing along”
From the soundtrack of the movie, “Once”
*****
I think this song is absolutely beautiful, the words and the music. I’m especially struck by the second to last two verses.
Friday, June 6, 2008
Run Down
I don’t know what’s come over me, but I feel as if I’m moving in slow motion.
I feel like I’ve stood in front of a firing squad. They fired a round of blanks and plastered me against the wall. Now I’ve got to peel myself off.
It’s like I took five very large steps back over night.
I fell asleep on the couch. Then I got up to go to bed. My muscles were weak and they felt like they had been injected with lead. All 90-something pounds of me were useless, dead wait.
Why I insist on dragging myself into bed, I’ll never understand. It’s something about routine, I guess.
Lately, I know why I flare. But right now, it’s like I’m back to where I was in October or December.
There’s nothing to explain this sudden onslaught of symptoms. I have a cold/sore throat that seems to come and go as it pleases.
The only thing I can contribute all of this to is the fact that I’m working 40-hours a week. The thing I can’t make any sense of is why sitting in a chair is so damning to my fragile immune system.
Not only do I feel exhausted, but I also feel run down.
I feel like I’ve stood in front of a firing squad. They fired a round of blanks and plastered me against the wall. Now I’ve got to peel myself off.
It’s like I took five very large steps back over night.
I fell asleep on the couch. Then I got up to go to bed. My muscles were weak and they felt like they had been injected with lead. All 90-something pounds of me were useless, dead wait.
Why I insist on dragging myself into bed, I’ll never understand. It’s something about routine, I guess.
Lately, I know why I flare. But right now, it’s like I’m back to where I was in October or December.
There’s nothing to explain this sudden onslaught of symptoms. I have a cold/sore throat that seems to come and go as it pleases.
The only thing I can contribute all of this to is the fact that I’m working 40-hours a week. The thing I can’t make any sense of is why sitting in a chair is so damning to my fragile immune system.
Not only do I feel exhausted, but I also feel run down.
Blog, Blog, Blog
I have to stop blogging before work because I always lose track of time.
I haven’t been late, but I’m always rushed. And lately, slow and (attempting to be) steady are my middle names.
I can’t blog after work because I’m too tired.
Last night, I ended up falling asleep at like 9 o’clock.
Working a 40-hour a week job is yet another example of the imperfect science that is my life. I’m putting in 40 hours at work, but getting nothing done at home. And when I say nothing, I literally mean nothing…
I haven’t been late, but I’m always rushed. And lately, slow and (attempting to be) steady are my middle names.
I can’t blog after work because I’m too tired.
Last night, I ended up falling asleep at like 9 o’clock.
Working a 40-hour a week job is yet another example of the imperfect science that is my life. I’m putting in 40 hours at work, but getting nothing done at home. And when I say nothing, I literally mean nothing…
Labyrinthitis
So early last night I was doing research for a project and I guess I had never wiki-ed lupus before (oddly enough). And not that I’m suggesting that Wikipedia is the end all, be all of information, but…
Well, well, well.
I was looking at the symptoms they listed for lupus and…
BOOM!
Autoimmune inner ear disease (AIED).
What the heck is that, you ask? That’s what I wondered too…
BANG!
Labyrinthitis.
Okay, I guess that’s not much clearer.
Well, it’s the very thing that I was told caused my episode of vertigo nearly two years ago.
Now the pieces are starting to fit together.
Apparently, AIED is very, very rare, as in an incidence rate of less than 1%.
But nothing about this experience has been typical. Then again, it never is.
I know I’ve been obsessed with this, but I knew that it was related somehow.
So, what to do with this information? I guess it’s mine for posterities sake!
I, the ever-defiant detective, solves the mystery… again!
Well, well, well.
I was looking at the symptoms they listed for lupus and…
BOOM!
Autoimmune inner ear disease (AIED).
What the heck is that, you ask? That’s what I wondered too…
BANG!
Labyrinthitis.
Okay, I guess that’s not much clearer.
Well, it’s the very thing that I was told caused my episode of vertigo nearly two years ago.
Now the pieces are starting to fit together.
Apparently, AIED is very, very rare, as in an incidence rate of less than 1%.
But nothing about this experience has been typical. Then again, it never is.
I know I’ve been obsessed with this, but I knew that it was related somehow.
So, what to do with this information? I guess it’s mine for posterities sake!
I, the ever-defiant detective, solves the mystery… again!
"Spoon Theory"
A loyal reader provided this:
www.butyoudontlooksick.com/the_spoon_theory
It’s very insightful and relates to several of my recent posts.
I particularly like “spoon theory” because it seeks to show those who don’t understand that every aspect of my life is work, even the aspects that I used to take for granted. Maybe the next time someone wants to accuse me of trying to take it easy, they’ll realize that I used up half my "spoons" before I even left my apartment this morning.
Thanks, Dan!
www.butyoudontlooksick.com/the_spoon_theory
It’s very insightful and relates to several of my recent posts.
I particularly like “spoon theory” because it seeks to show those who don’t understand that every aspect of my life is work, even the aspects that I used to take for granted. Maybe the next time someone wants to accuse me of trying to take it easy, they’ll realize that I used up half my "spoons" before I even left my apartment this morning.
Thanks, Dan!
Thursday, June 5, 2008
It's All In The Delivery
Yesterday I was talking to a friend who told me something that I hadn’t realized. This friend told me that I’m too nice to people when it comes to their not understanding my situation, and that there’s no reason not to be firm with people in order to get my point across.
You know, when I’ve thought about people not understanding, I’ve wholly attributed it to their inability to commiserate with something they haven’t experienced themselves.
But what if my delivery has been all wrong?
What if I’ve failed in getting the severity of my situation across to people?
Because most everything in my life appears normal, so it shall be.
You know, when I’ve thought about people not understanding, I’ve wholly attributed it to their inability to commiserate with something they haven’t experienced themselves.
But what if my delivery has been all wrong?
What if I’ve failed in getting the severity of my situation across to people?
Because most everything in my life appears normal, so it shall be.
"Hey, Hey Hockeytown"!!!
I couldn’t pass up the opportunity to congratulate my home team, the Detroit Red Wings, for being the 2008 Stanley Cup Champions.
This is the fourth time in eleven years.
This is the fourth time in eleven years.
“Pain Is Not An Acceptable Excuse, Nor Is It A Badge Of Honor”
Yep, that’s what one of the commentators said just at the start of the sixth game of the Stanley Cup Finals last night.
In the world of hockey, that might be true, but what about in the world of chronic illness?
These players knowingly put their bodies through the ringer – for the sake of money, fame, career – whatever their reasoning may be.
Others of us are prisoners to our own bodies for crimes we didn’t commit.
In the world of hockey, that might be true, but what about in the world of chronic illness?
These players knowingly put their bodies through the ringer – for the sake of money, fame, career – whatever their reasoning may be.
Others of us are prisoners to our own bodies for crimes we didn’t commit.
Wednesday, June 4, 2008
The Secrets We Keep, The Lies We Tell
Alright, it’s confession time…
- Last year I had an “episode” that I never told anyone about. And now I’m forced to wonder if it was a foretelling of things to come, of a body gone haywire, an immune system on attack mode.
One morning, I woke up and I felt weird. A little nauseous, a little dizzy. But the worst part was that I couldn’t focus on anything, couldn’t think. I attempted to read e-mails, but my mind couldn’t process the words. I tried to watch TV, but it was like the people were talking in a foreign language.
Could it have been a massive episode of brain fog so common amongst lupus patients?
Something worse?
- I can’t maneuver my arms to close the back of hospital gowns. I’ve never bothered to ask for help. They’re usually so big, anyway, that they can go at least fully around me without needing to be closed.
- I have a hard time opening prescription bottles, so I have to ask for the non-child proof kind. But it embarrasses me to have to ask. It makes me feel like less of a person.
- I’m not sure if I know what I’m doing with my life.
- After the first connective tissue tests came back positive and my first primary care doctor sent me for more blood work, I cried in the lab chair the whole time.
The lab tech perceived this as nervousness toward the impending needle stick. By this time I had already become desensitized to this caveman type ritual.
I told her to go ahead.
It was more of the fact that I couldn’t believe I was sitting in the chair, facing so many unknowns, with nowhere to run and hide. I’ve never told that to anyone.
And you know what else? I’m not sure I’m much different than that girl sitting in that chair eight months ago…
- You know, I’ve talked a lot about how so often, it’s people in their prime who are struck down by autoimmune diseases. And I’ve gone as far as to suggest that I am one of those “prime” people.
What if that’s not true?
My new RA/SLE/sick/ill persona would seem to suggest otherwise.
- You know, I’ve been thinking, and I think that at some point in all of our lives, to some portion of our social circle, we are posers.
We act like those around us. We pretend we are people we are not. We appear as happy and healthy, when in fact, that combination of identities couldn’t be further from the truth.
The sad thing is that society has made us feel compelled to do this at all.
It’s dishonest. Not only does it cheat those around us out of knowing who we really are, it cheats ourselves.
Some of us hide more. We have more to lose, so we have more to hide in order to protect ourselves from the loss that would ensue.
- Last year I had an “episode” that I never told anyone about. And now I’m forced to wonder if it was a foretelling of things to come, of a body gone haywire, an immune system on attack mode.
One morning, I woke up and I felt weird. A little nauseous, a little dizzy. But the worst part was that I couldn’t focus on anything, couldn’t think. I attempted to read e-mails, but my mind couldn’t process the words. I tried to watch TV, but it was like the people were talking in a foreign language.
Could it have been a massive episode of brain fog so common amongst lupus patients?
Something worse?
- I can’t maneuver my arms to close the back of hospital gowns. I’ve never bothered to ask for help. They’re usually so big, anyway, that they can go at least fully around me without needing to be closed.
- I have a hard time opening prescription bottles, so I have to ask for the non-child proof kind. But it embarrasses me to have to ask. It makes me feel like less of a person.
- I’m not sure if I know what I’m doing with my life.
- After the first connective tissue tests came back positive and my first primary care doctor sent me for more blood work, I cried in the lab chair the whole time.
The lab tech perceived this as nervousness toward the impending needle stick. By this time I had already become desensitized to this caveman type ritual.
I told her to go ahead.
It was more of the fact that I couldn’t believe I was sitting in the chair, facing so many unknowns, with nowhere to run and hide. I’ve never told that to anyone.
And you know what else? I’m not sure I’m much different than that girl sitting in that chair eight months ago…
- You know, I’ve talked a lot about how so often, it’s people in their prime who are struck down by autoimmune diseases. And I’ve gone as far as to suggest that I am one of those “prime” people.
What if that’s not true?
My new RA/SLE/sick/ill persona would seem to suggest otherwise.
- You know, I’ve been thinking, and I think that at some point in all of our lives, to some portion of our social circle, we are posers.
We act like those around us. We pretend we are people we are not. We appear as happy and healthy, when in fact, that combination of identities couldn’t be further from the truth.
The sad thing is that society has made us feel compelled to do this at all.
It’s dishonest. Not only does it cheat those around us out of knowing who we really are, it cheats ourselves.
Some of us hide more. We have more to lose, so we have more to hide in order to protect ourselves from the loss that would ensue.
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