I've been thinking this last week that I'm possibly having a little bit of a lupus flare.
Why? Because my energy level has dropped and I have a bit of a rash on both arms, turning into pitachea (sp?) that I had years ago when I was really really sick with lupus. Before I got on meds, before I was diagnosed, I had these weird little red spots pop up on my arms. After I got diagnosed, my doctor said that was pitachea, little blood vessels near the skin breaking and forming red spots on my skin.
My left arm definitely has the spots, still. My right arm was a bit different, in that it had a scaly patch of skin on my upper arm that I scratched until it bled -- unfortunately. Then I got some little red dots.
I don't recall having the scaly patches of skin before. But each person's dealings with lupus are so different, it's not unusual that I'd now be experiencing something new.
And if those are the only signs of a flare, that's okay with me. It could be a lot worse. It HAS been a lot worse.
So I fortunately have a rheumatologist's appointment on Monday afternoon. The lab work that I did on Friday may or may not show some kind of flare. I've been around this disease long enough to know that lab work doesn't necessarily show anything. I may have had a hit and run thing that disappeared before I got the blood drawn. And it may not even be a flare, after all.
We'll see. I'm just glad that I'm feeling a bit better now, and will certainly feel better after seeing my doctor and finding out if there's any truth to what I'm thinking.
And what to do about it, if it is a flare. It's been so long since lupus has been active, I don't remember how we treated a flare.
And that's a good thing.
Wishing everybody with lupus a pain-free day and a steady path toward recovery.
<Lupus
Saturday, October 31, 2009
Thursday, October 8, 2009
Be a Part of My New Book!
I've received some contributions to my new project, but can always use more. I just sent a note to one lupus support group thanking them for their honesty and intensity of emotion in dealing with this disease. I also reminded the group that entries don't have to be "perfect" by way of grammar and punctuation -- my publisher and I will take care of that issue. Besides, things written in the heat of the moment are the most honest, and sometimes even I get carried away with typos. Really. Heh.
I think to make my blogging day easier -- I don't post every day on each blog -- I'll consolidate all my book blogs into one. My lupus blog, of course, will remain, as will my military brat blog. I'll keep my Aged to Imperfection blog, though. I have entirely too much fun with it to let it go.
Today, in my lupus life, I'm kind of aching. I attribute this to the change in the weather. A cold front is blowing in -- again. We here in N. Central Texas are really being battered by rain and thunderstorms. It's a good thing I ran all my errands yesterday so I don't have to be out on slick streets today. Texans don't drive very well in rainy weather. We're generally not acquainted with so much rain on the road that we tend to drive "as usual" even in rainy conditions. As for ice.....well, you can imagine.
Okay, I'm off to consolidate my blogs. Before the wind takes out the electric power lines......
<Lupus
I think to make my blogging day easier -- I don't post every day on each blog -- I'll consolidate all my book blogs into one. My lupus blog, of course, will remain, as will my military brat blog. I'll keep my Aged to Imperfection blog, though. I have entirely too much fun with it to let it go.
Today, in my lupus life, I'm kind of aching. I attribute this to the change in the weather. A cold front is blowing in -- again. We here in N. Central Texas are really being battered by rain and thunderstorms. It's a good thing I ran all my errands yesterday so I don't have to be out on slick streets today. Texans don't drive very well in rainy weather. We're generally not acquainted with so much rain on the road that we tend to drive "as usual" even in rainy conditions. As for ice.....well, you can imagine.
Okay, I'm off to consolidate my blogs. Before the wind takes out the electric power lines......
<Lupus
Tuesday, September 22, 2009
How Weather Can Affect Us....
Well, at least it affects me. It's been raining in N. Central Texas for almost two weeks straight, now, and I'm hurting. Hurting makes me cranky.
I don't know if it's so much the lupus that makes my muscles and joints ache as much as it is the fibromyalgia. At any rate, it's understood among lupus patients that a barometric pressure change can do a lot of damage to our bodies.
I knew one young woman several years ago who related the story that she was driving from N Central TX to Louisiana and encountered a severe drop in barometric pressure. So much of her body was crippled, she had to stop in a small town and go to the ER. They kept her for several days, which blew her schedule apart, but after receiving IV doses of prednisone, she was able to continue her trip.
Not all of us have this response, though. That's one of the things about this disease: No "one size fits all." I do better in the colder weather than in the heat. Even when I go outside in the summer heat wearing long sleeves, long pants and a broad-brimmed hat, I am completely depleted of any energy I might have had before stepping out the door.
In the colder weather, unless it's very damp, I do much better with my energy level. Some people cannot function in the colder climes, and part of it may be due to Reynaud's Disease, where the feet and hands turn red and chapped looking and tingle. This can occur even at the frozen foods section of the supermarket. It doesn't seem to bother me, though the lupus person right next to me is wearing gloves as she sorts through the frozen goods.
I think I've done enough typing for today. My hands ache and I'm making too many errors that even spell check might not catch.
Everybody, take care of yourselves, okay?
<Lupus
I don't know if it's so much the lupus that makes my muscles and joints ache as much as it is the fibromyalgia. At any rate, it's understood among lupus patients that a barometric pressure change can do a lot of damage to our bodies.
I knew one young woman several years ago who related the story that she was driving from N Central TX to Louisiana and encountered a severe drop in barometric pressure. So much of her body was crippled, she had to stop in a small town and go to the ER. They kept her for several days, which blew her schedule apart, but after receiving IV doses of prednisone, she was able to continue her trip.
Not all of us have this response, though. That's one of the things about this disease: No "one size fits all." I do better in the colder weather than in the heat. Even when I go outside in the summer heat wearing long sleeves, long pants and a broad-brimmed hat, I am completely depleted of any energy I might have had before stepping out the door.
In the colder weather, unless it's very damp, I do much better with my energy level. Some people cannot function in the colder climes, and part of it may be due to Reynaud's Disease, where the feet and hands turn red and chapped looking and tingle. This can occur even at the frozen foods section of the supermarket. It doesn't seem to bother me, though the lupus person right next to me is wearing gloves as she sorts through the frozen goods.
I think I've done enough typing for today. My hands ache and I'm making too many errors that even spell check might not catch.
Everybody, take care of yourselves, okay?
<Lupus
Contributors Adding Up.....
Thanks to all who have so far indicated their willingness to be contributors to my newest lupus book. They have received their Contributor's Release Forms and general outline of what this book will be about, and I'm excited to see this project moving along.
My request is on twitter and facebook, as well as several lupus online support groups, and I'm talking to the local chapter of the LFA to see what ideas they may have.
I might add that my first book, Diagnosis: Lupus: The Intimate Journal of a Lupus Patient, has been endorsed by the LFA's education committee as Recommended Reading. I hope to gain this distinction with this new project also.
The thrust of this book is relating, in many different people's words, how lupus affects each person differently, to what degree, and how each person copes with this disease. Or not. I have invited lupus patients to choose one of many topics to share, or even to "vent" their frustrations, and we can extrapolate from those messages any or all topics to include.
Contributors will be anonymous, as will their locations. Their privacy will be maintained throughout the process, and their messages will be sent to a separate email account: lupusproject@sbcblobal.net.
Let's spread the word so we can better educate and inform those "civilians" (those who don't have our disease) and gain a greater awareness of what happens to our bodies, mind, and spirit when this disease strikes.
Pass this message along. Somebody needs your help.
<Lupus
My request is on twitter and facebook, as well as several lupus online support groups, and I'm talking to the local chapter of the LFA to see what ideas they may have.
I might add that my first book, Diagnosis: Lupus: The Intimate Journal of a Lupus Patient, has been endorsed by the LFA's education committee as Recommended Reading. I hope to gain this distinction with this new project also.
The thrust of this book is relating, in many different people's words, how lupus affects each person differently, to what degree, and how each person copes with this disease. Or not. I have invited lupus patients to choose one of many topics to share, or even to "vent" their frustrations, and we can extrapolate from those messages any or all topics to include.
Contributors will be anonymous, as will their locations. Their privacy will be maintained throughout the process, and their messages will be sent to a separate email account: lupusproject@sbcblobal.net.
Let's spread the word so we can better educate and inform those "civilians" (those who don't have our disease) and gain a greater awareness of what happens to our bodies, mind, and spirit when this disease strikes.
Pass this message along. Somebody needs your help.
<Lupus
Thursday, September 3, 2009
What About the Swine Flu?
I'm a member of several online lupus support groups, and one of the more recent topics was that of how do we cope with the possibility of contracting the swine flu?
I was at the doctor's office yesterday, just for a regular yearly checkup, and I asked about the flu shots -- both kinds, regular and swine flu. She's not giving the regular flu shots; I can get one at my local pharmacy, like I did last year.
And she suggested I NOT get the swine flu shot, anywhere, anytime. We don't know what's in it, was the general agreement, and people with lupus don't need to experiment with any kind of medicine or inoculation.
Okay. So I woke up this morning with a sneezing fit, feeling kind of feverish. I took my temperature, and YEA, no fever. Just an ordinary allergic reaction to good old N. Central Texas air. Maybe the neighbor mowed his yard. Finally.
So that presents another question (not the yard, though). What do we do to avoid getting the swine flu?
I already don't go out much, due to the Texas heat and intense sunshine of the summer. I shop at a grocery store that provides sanitary wipes for their cart handles (I always picture a baby drooling all over the handle) and I use them faithfully. If I see or hear someone with the "sniffles" or is coughing, I go the other way. At other places, or with friends, I haul out the hand sanitizer and use it before I do anything else, such as eating lunch, or shopping in a department store.
Is this enough? What about masks? I see lots of people wearing masks, although I must admit, I see this mostly on television, where they are showing the populace of such cities as Mexico City or Hong Kong, not Dallas-Fort Worth. Besides, I've heard that wearing those masks really doesn't help much.
I don't like avoiding crowds, just to avoid the swine flu. I mean, my life is limited enough as it is, with restrictions placed on my simply having a disease that strongly suggests I avoid the sun and rest as often as necessary.
So I'll probably take my chances on driving to the mall, parking my car and wearing a broad-brimmed hat as I walk to the main entrance. Then I begin my stroll twice around both levels before I'm pulled into a certain store's seductive window display (a bookstore, of course!) and then it's time to go home.
Where my granddaughters, ages 9 and 4 years, have arrived for my son and me to watch while their mama goes to the hospital to be with a friend during childbirth. Okay. They're active -- very active little girls, especially the 4 year old who insists she's a horse, and crawls around the house, neighing loudly. The 9 year old has brought her laptop computer and settles in at the kitchen table to play games.
They don't look sick. Neither of them sneezes or coughs, and they don't look feverish. But the 9 year old announces after an hour or two, "It's time for me to take a Tylenol. My mom says I have a cold."
Oy, vey. I have hugged her, played on her computer, handled her lunch dishes and milk glass....no wonder I woke up this morning thinking I have a cold.
There goes one of the recommendations -- that I avoid crowds, or people likely to have a cold or the flu.
Where grandchildren are concerned, I'll still hug and play with the little germ factories. And I'll take my chances with the swine flu.
<Lupus
<Swine Flu
I was at the doctor's office yesterday, just for a regular yearly checkup, and I asked about the flu shots -- both kinds, regular and swine flu. She's not giving the regular flu shots; I can get one at my local pharmacy, like I did last year.
And she suggested I NOT get the swine flu shot, anywhere, anytime. We don't know what's in it, was the general agreement, and people with lupus don't need to experiment with any kind of medicine or inoculation.
Okay. So I woke up this morning with a sneezing fit, feeling kind of feverish. I took my temperature, and YEA, no fever. Just an ordinary allergic reaction to good old N. Central Texas air. Maybe the neighbor mowed his yard. Finally.
So that presents another question (not the yard, though). What do we do to avoid getting the swine flu?
I already don't go out much, due to the Texas heat and intense sunshine of the summer. I shop at a grocery store that provides sanitary wipes for their cart handles (I always picture a baby drooling all over the handle) and I use them faithfully. If I see or hear someone with the "sniffles" or is coughing, I go the other way. At other places, or with friends, I haul out the hand sanitizer and use it before I do anything else, such as eating lunch, or shopping in a department store.
Is this enough? What about masks? I see lots of people wearing masks, although I must admit, I see this mostly on television, where they are showing the populace of such cities as Mexico City or Hong Kong, not Dallas-Fort Worth. Besides, I've heard that wearing those masks really doesn't help much.
I don't like avoiding crowds, just to avoid the swine flu. I mean, my life is limited enough as it is, with restrictions placed on my simply having a disease that strongly suggests I avoid the sun and rest as often as necessary.
So I'll probably take my chances on driving to the mall, parking my car and wearing a broad-brimmed hat as I walk to the main entrance. Then I begin my stroll twice around both levels before I'm pulled into a certain store's seductive window display (a bookstore, of course!) and then it's time to go home.
Where my granddaughters, ages 9 and 4 years, have arrived for my son and me to watch while their mama goes to the hospital to be with a friend during childbirth. Okay. They're active -- very active little girls, especially the 4 year old who insists she's a horse, and crawls around the house, neighing loudly. The 9 year old has brought her laptop computer and settles in at the kitchen table to play games.
They don't look sick. Neither of them sneezes or coughs, and they don't look feverish. But the 9 year old announces after an hour or two, "It's time for me to take a Tylenol. My mom says I have a cold."
Oy, vey. I have hugged her, played on her computer, handled her lunch dishes and milk glass....no wonder I woke up this morning thinking I have a cold.
There goes one of the recommendations -- that I avoid crowds, or people likely to have a cold or the flu.
Where grandchildren are concerned, I'll still hug and play with the little germ factories. And I'll take my chances with the swine flu.
<Lupus
<Swine Flu
Monday, August 31, 2009
What's in a Name?
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
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
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.
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