I think people who have lupus, or SLE, should have a name for themselves.
One reason I think we need a name to describe us is because I come somewhat annoyed at such names as "Lupus Victim" or "Lupus Survivor." I am not, nor have I ever been, a victim of anything, particularly of lupus. And yes, I am a survivor, but that connotation smacks of a lucky circumstance, such as " I survived a hurricane" or some other natural disaster.
I'm not mocking others that are proud to call themselves A _______ Survivor (fill in the blank with the name of a disease. They can call themselves anything they want. I just choose not to use those terms.
Now, I've seen the term, Lupie. Not so fond of that, either, because while it reflects a light-hearted touch, it also brings up the derogatory impression of someone who is a bit -- well, strange, or inebrieated, or "loopy."
So I herewith present some options I just made up. Read at your own peril.
Lupian
Lupusonian
Lupusette (for a woman)
Lupusor (male)
Lupuster
SLEer
SLEver
SLEian
SLEonian
Well, you get the idea. It's late, and my nighttime meds have just kicked in and this Lupus person needs to get to bed.
If you have any suggestions for a name for those of us who have lupus, feel free to leave them in a comment. I promise I will take any and all names under consideration. Since I am broke, as nearly all of us with lupus are, there will be no prizes awarded. However, if I find one that particularly tickles my funny bone, I promise I will use that name in my next post here.
Have fun.
<Lupus
Monday, August 31, 2009
Thursday, August 27, 2009
Same Disease, Different Outcomes
Oh, how I wish we Lupies, Lupans, Lupusonians, whatever you want to label us...(anything but lupus victim!) had clear-cut symptoms that showed up instantly on blood tests, that the appropriate drugs would be prescribed that would work for all of us without nasty side-effects, and that family and friends would somehow miraculously understand and support us.
But the more I interact with others in sharing about our disease, the more I find we are incredibly complex creatures dealing with an incredibly complex disease.
Some of us have headaches, unrelenting and unexplained. Some get headaches only after taking a certain medication. I had joint pain as one of my first symptoms; I know another woman who suddenly had complete kidney shut-down. That was her first and only clue. Some can take cytoxan, imuran and plaquenil; others get violently ill or have other bad side-effects. And some of us have rheumatologists who know what they're dealing with and are very attentive to our needs; others of us come away from yet another doctor who suggests (again) it's all in our pretty little heads.
Lupus is the most frustrating, irritating, inconvenient, painful, psyche-damaging, depressing, deadly disease I can think of. We get no respect because, as we are told constantly, "You don't look sick." Of course we don't look sick. Sick people are supposed to be thin, gaunt, and hobbling around with a death mask on. On the other hand, and this is my experience, shared by some but not all, we are -- ahem -- fluffy. Overweight because of large doses of Prednisone. Retaining water like crazy. Our cheeks look like chipmunks. So how could we be so sick, when we're so fat? I used to add to my explaination about lupus, "And I'm overweight because of the medications I'm on." But that doesn't impress some people at all. They still can't see it.
If we had a broken arm, our arm would be in a cast, and people would offer sympathies and help with carrying packages, etc. Or if we're in a wheelchair, they assume we're somehow lame and flock to our sides, providing any help they can give.
But let me park in a handicapped parking spot, put the parking permit on my windshield, and step out of my car, and some busy-body will frown and snap: "You're not handicapped. You shouldn't be parking there." I always want to give them a long explanation, but I've resorted to my standard answer: "There are all kinds of handicaps. Ignorance is one of them."
Day by day, we cope as best we can. Some days are better than others. Right now, I'm in remission, or at least my doctor said the last time I went in to see him. But I know lupus is capable of launching a sneak attack at any moment, leaving me back where I started from -- or even worse.
But I can't let that threat hang over my head. I have a standard reply to that possibility, too, when anybody asks. "I can go outside and get hit by a truck, too."
And couldn't we all. One insensitive person once threw this at me: "Lupus is fatal, isn't it?"
I smiled sweetly and said, "Well, life is fatal."
Today, I'm okay. And tomorrow isn't here yet. Whatever lupus brings tomorrow, I can deal with it. I've had plenty of practice.
But the more I interact with others in sharing about our disease, the more I find we are incredibly complex creatures dealing with an incredibly complex disease.
Some of us have headaches, unrelenting and unexplained. Some get headaches only after taking a certain medication. I had joint pain as one of my first symptoms; I know another woman who suddenly had complete kidney shut-down. That was her first and only clue. Some can take cytoxan, imuran and plaquenil; others get violently ill or have other bad side-effects. And some of us have rheumatologists who know what they're dealing with and are very attentive to our needs; others of us come away from yet another doctor who suggests (again) it's all in our pretty little heads.
Lupus is the most frustrating, irritating, inconvenient, painful, psyche-damaging, depressing, deadly disease I can think of. We get no respect because, as we are told constantly, "You don't look sick." Of course we don't look sick. Sick people are supposed to be thin, gaunt, and hobbling around with a death mask on. On the other hand, and this is my experience, shared by some but not all, we are -- ahem -- fluffy. Overweight because of large doses of Prednisone. Retaining water like crazy. Our cheeks look like chipmunks. So how could we be so sick, when we're so fat? I used to add to my explaination about lupus, "And I'm overweight because of the medications I'm on." But that doesn't impress some people at all. They still can't see it.
If we had a broken arm, our arm would be in a cast, and people would offer sympathies and help with carrying packages, etc. Or if we're in a wheelchair, they assume we're somehow lame and flock to our sides, providing any help they can give.
But let me park in a handicapped parking spot, put the parking permit on my windshield, and step out of my car, and some busy-body will frown and snap: "You're not handicapped. You shouldn't be parking there." I always want to give them a long explanation, but I've resorted to my standard answer: "There are all kinds of handicaps. Ignorance is one of them."
Day by day, we cope as best we can. Some days are better than others. Right now, I'm in remission, or at least my doctor said the last time I went in to see him. But I know lupus is capable of launching a sneak attack at any moment, leaving me back where I started from -- or even worse.
But I can't let that threat hang over my head. I have a standard reply to that possibility, too, when anybody asks. "I can go outside and get hit by a truck, too."
And couldn't we all. One insensitive person once threw this at me: "Lupus is fatal, isn't it?"
I smiled sweetly and said, "Well, life is fatal."
Today, I'm okay. And tomorrow isn't here yet. Whatever lupus brings tomorrow, I can deal with it. I've had plenty of practice.
Wednesday, August 26, 2009
Never Turn Your Back....
I was suddenly reminded today that I perhaps have been a bit too cocky in my estimation of how lupus is currently in remission, patting myself on the back for maintaining at least some semblance of normal health and normal activities.
Yet I know this is not true. It's sunny and hot here in Texas, and I can't get out in the heat and searing sunshine because I have lupus. I need to stay out of the sun, and the heat is debilitating. I also have numerous seasonal allergies, and am taking decongestants by the handful with each change in wind direction; I'm in North Central Texas, but West Texas dust insists on making a home here. Or it's the moist Gulf breezes that blow up from S. Texas, bringing with it their own particular vegetation that my poor immune-challenged body can't handle.
I need to get up from the computer every so often and bend my knobby knees, rest my arthritic fingers and massage my craned neck; nearsightedness is a habit, even when I bring the computer screen closer to me.
So, when I posted on one of my many online lupus support groups that I had to be careful not to wake that old Gypsy, Lupus, or she would saddle up her horses and ride around my body, looking for sites to set up her campfires, watching them as they flared, burned down and smoldered, before she set off again for another body organ to destroy.
So, shhhhh. Don't speak too soon about being in remission.
Lupe just might want to prove me wrong.
<Lupus
Yet I know this is not true. It's sunny and hot here in Texas, and I can't get out in the heat and searing sunshine because I have lupus. I need to stay out of the sun, and the heat is debilitating. I also have numerous seasonal allergies, and am taking decongestants by the handful with each change in wind direction; I'm in North Central Texas, but West Texas dust insists on making a home here. Or it's the moist Gulf breezes that blow up from S. Texas, bringing with it their own particular vegetation that my poor immune-challenged body can't handle.
I need to get up from the computer every so often and bend my knobby knees, rest my arthritic fingers and massage my craned neck; nearsightedness is a habit, even when I bring the computer screen closer to me.
So, when I posted on one of my many online lupus support groups that I had to be careful not to wake that old Gypsy, Lupus, or she would saddle up her horses and ride around my body, looking for sites to set up her campfires, watching them as they flared, burned down and smoldered, before she set off again for another body organ to destroy.
So, shhhhh. Don't speak too soon about being in remission.
Lupe just might want to prove me wrong.
<Lupus
Monday, August 24, 2009
New Book Coming Up
Some of you may know that I wrote and published a book about my journey with lupus, titled: Diagnosis: Lupus: The Intimate Journal of a Lupus Patient. (PublishAmerica.com and Amazon.com) The book consisted of selected entries from my daily journal over a three-year period as I was looking fora diagnosis and treatment of this disease.
And, a few of you might have actually read it! I have received some comments and encouragment from other lupus patients -- or lupans, or lupies, or whatever we are called at any given moment. I've been on several on-line support groups recently, and one of the members on one of the groups innocently asked,"Are you planning on writing another book on lupus?"
Well, that, as they said in the olden days, "gave me pause."
I wondered, "Why re-invent the wheel?" And then I thought, "Why not?" This new one would be from others' experiences, drawn from our many personal stuggles with meds, doctors, (the good, the bad, and the ugly) dealing with family and friends, and the outrageous remarks we hear from others-- one of the most irritating, although meant to be encouraging, is: "But you don't look sick!" I always interpreted that well-intentioned remark as "How can you be sick when you are so--- so-- uh....(I usually step in and say, "Overweight? Fat?) Because I'm taking tons of prednisone and other meds that puff me up. It's either that, or deal with the pain of swollen joints and other parts of my body that hurt."
Doctors that insist emphatically "You can't have lupus; you don't have the butterfly rash." Or worse, "There's nothing wrong with you. Go home and forget about it."
Hospitals that abuse us physically and emotionally, running tests that actually contort already pain-wracked bodies and then snap at us to "be still, or I'll have to run this again."
Families that don't understand how we can be up and doing things one day and can't get out of bed on the next. '
Friends who try to understand when we cancel plans for an outing, but who soon stop even asking us to join them in some event, because we just might not be able to go.
And ourselves, since we can sometimes be our own worst enemies by not asking questions of our doctors, demanding answers to our questions when we finally learn what questions to ask, and feeling sorry for ourselves to the point where we're no good to anybody, least of all, ourselves.
So, I'm asking anyone who has lupus, or is suspected of having lupus (SLE or discoid or both) to please email me or leave a comment on this blog: Would you like to contribute to my upcoming book? I am working on several things in advance for this to happen: Refining a list of suggested topics for your comments and setting the format.
For those who express an interest in taking part in this process, let me assure you
I will be sending each participant a Release, stating that my publisher (Vanilla Heart Publishing) and I will preserve your anonymity and your privacy by giving you different names and locations. All comments will be edited for brevity if needed, and for content and clarity (i.e., spelling and grammar) while the intent and tone of each comment will remain intact. While you might wish to "trash" various physicians, I will change the names and locations of those individuals, also. (We don't want a lawsuit!)
Finally, we need to start this process soon, as this book will be scheduled for release in May, 2010, to coincide with World Lupus Day observances.
Oh, and a percentage of my profits from this book will be donated to the Lupus Foundation of America. While the details have not yet been worked out at this writing, my publisher is also planning a promotional event to benefit both readers of this book and for lupus research.
If you would leave a comment, please include your email addy and a brief description of your own issues with SLE or discoid lupus, such as I have in my signature line below.
If you would rather reply by private email, please send it to me at marilyncmorris@sbcglobal.net
And many thanks in advance. I'm excited about this new venture. I hope you are, too.
Marilyn Celeste Morris
dx'd with SLE in 1988 at age 50 (making me very old, I know) after a 3 year, five doctor search for diagnosis and treatment of this sneaky disease. Currently in remission.
<Lupus
<SLE
And, a few of you might have actually read it! I have received some comments and encouragment from other lupus patients -- or lupans, or lupies, or whatever we are called at any given moment. I've been on several on-line support groups recently, and one of the members on one of the groups innocently asked,"Are you planning on writing another book on lupus?"
Well, that, as they said in the olden days, "gave me pause."
I wondered, "Why re-invent the wheel?" And then I thought, "Why not?" This new one would be from others' experiences, drawn from our many personal stuggles with meds, doctors, (the good, the bad, and the ugly) dealing with family and friends, and the outrageous remarks we hear from others-- one of the most irritating, although meant to be encouraging, is: "But you don't look sick!" I always interpreted that well-intentioned remark as "How can you be sick when you are so--- so-- uh....(I usually step in and say, "Overweight? Fat?) Because I'm taking tons of prednisone and other meds that puff me up. It's either that, or deal with the pain of swollen joints and other parts of my body that hurt."
Doctors that insist emphatically "You can't have lupus; you don't have the butterfly rash." Or worse, "There's nothing wrong with you. Go home and forget about it."
Hospitals that abuse us physically and emotionally, running tests that actually contort already pain-wracked bodies and then snap at us to "be still, or I'll have to run this again."
Families that don't understand how we can be up and doing things one day and can't get out of bed on the next. '
Friends who try to understand when we cancel plans for an outing, but who soon stop even asking us to join them in some event, because we just might not be able to go.
And ourselves, since we can sometimes be our own worst enemies by not asking questions of our doctors, demanding answers to our questions when we finally learn what questions to ask, and feeling sorry for ourselves to the point where we're no good to anybody, least of all, ourselves.
So, I'm asking anyone who has lupus, or is suspected of having lupus (SLE or discoid or both) to please email me or leave a comment on this blog: Would you like to contribute to my upcoming book? I am working on several things in advance for this to happen: Refining a list of suggested topics for your comments and setting the format.
For those who express an interest in taking part in this process, let me assure you
I will be sending each participant a Release, stating that my publisher (Vanilla Heart Publishing) and I will preserve your anonymity and your privacy by giving you different names and locations. All comments will be edited for brevity if needed, and for content and clarity (i.e., spelling and grammar) while the intent and tone of each comment will remain intact. While you might wish to "trash" various physicians, I will change the names and locations of those individuals, also. (We don't want a lawsuit!)
Finally, we need to start this process soon, as this book will be scheduled for release in May, 2010, to coincide with World Lupus Day observances.
Oh, and a percentage of my profits from this book will be donated to the Lupus Foundation of America. While the details have not yet been worked out at this writing, my publisher is also planning a promotional event to benefit both readers of this book and for lupus research.
If you would leave a comment, please include your email addy and a brief description of your own issues with SLE or discoid lupus, such as I have in my signature line below.
If you would rather reply by private email, please send it to me at marilyncmorris@sbcglobal.net
And many thanks in advance. I'm excited about this new venture. I hope you are, too.
Marilyn Celeste Morris
dx'd with SLE in 1988 at age 50 (making me very old, I know) after a 3 year, five doctor search for diagnosis and treatment of this sneaky disease. Currently in remission.
<Lupus
<SLE
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