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
Tuesday, September 22, 2009
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
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