I was on a lupus support group site yesterday, and a couple of the participants were fretting about the holidays. Fretting about the holidays for a lupus person, can certainly be detrimental to whatever health we have. Stress is any kind of change, and it's not all bad; this is a good stress, thinking about the joyous holiday season and all its attendant preparations.
Just as I have emphasized that once you get lupus, you have to give up your ideas of what's normal. Just because you did everything all in one day -- like I did laundry, grocery shopping and house cleaning all in one day, in the pre-lupus days -- doesn't mean you have to attain those goals now. Now, my motto while looking at a list of To Dos, is "Choose One."
But the holidays are different, I hear you protesting. I have to do X, Y and Z, because I've always done it. Nobody else knows how. And besides I want to do it.
Okay, go ahead, if you want to spend part of the holidays in ICU. Or flat on your back, while everybody else munches on the feast you lovingly prepared.
What I've learned to do -- and this came gradually, understand -- is change your normal holiday routine.
Gift shopping. We now draw names. No more searching for that perfect gift for a nephew whose tastes change from day to day. We do this name drawing at Thanksgiving, and set the monetary limit at under $20.00. This year, due to the economy, we'll probably set it at $10.00. You'd be surprised at what you can find for under $10.00. Merchants are falling all over themselves almost giving away their top selling items. And don't forget the convenience of on-line shopping.
For years, I had the entire family at my house for Thanksgiving and Christmas. I have a fairly large house, but it shrinks a bit more as each guest arrives. Everybody brings something, of course, and my brother bakes the turkey and brings it to my house. Gradually, we did away with using the good china and silver and good linen napkins, substituting paper or plastic products. There are some very nice paper plates out there, with beautiful holiday designs. Sure saves cleanup and not much dishwashing. I also save the plastic carryout boxes for several of the family members to take home with them for "seconds." After names are drawn and pies loaded onto dessert plates, we settle down to watch A Christmas Story, aka, "You'll shoot your eye out." The little boy wants a bb gun, and there are obstacles along the way. We've seen it so many times, we say the lines along with the characters, and roar with laughter every time.
Saves money that would have been spent going to a pricey movie.
At Christmas, the tradition is the same as Thanksgiving....same menu, same place. I gradually left off some decorations, figuring the tree and a few candles would be enough. This year, since my niece will have Christmas at her house (bless her heart!) and my kids in CA won't be coming, I'm probably not even put up the tree, which has always been an energy-burner.
Am I being a Scrooge? Not at all. I will celebrate the holidays with my family as usual, but I won't have to do all the work. I'll be gone for Thanksgiving so my niece is having that meal, too, and when she found out I'll not be there, she yelped: "Who's going to do the cornbread dressing?" Not to worry. I emailed her my mother's Secret Cornbread Dressing Recipe.
So there goes another part of the holidays that I don't have to be in charge of. Funny thing, the family will survive the change in traditions. I didn't think I could do it, but now I find that's a really nice feeling, something like "passing the torch" to the next generation.
Even if it's just passing along the secret family recipe for Cornbread Dressing.
<Lupus
<Holidays
Monday, November 16, 2009
Thursday, November 12, 2009
Been Missing in Action Here
I thought maybe I had a flare. Felt lousy, my knees hurt, and had skin issues, especially with what I had years ago -- pittacea (sp) or little red spots showing as blood vessels close to the skin burst and leave a mark. This was on one upper arm. The other upper arm, not to be outdone, had a dry, scaly patch, which I unconsciously scratched until it bled.
Since I had a rheum appt. in the next few days, I let it go and didn't panic. I got my lab work done on Friday before my appt. on Monday afternoon, and I asked them to send the results asap to my rheumy.
Arrived at his office, and no lab results. He checked me over, and of course the skin issues had disappeared by that time. My knees weren't as swollen, either. So-- probably wasn't a flare, nothing to worry about. But then he suggested I might want to drink some tonic water every night....without the gin, of course. He suggested lemon juice or something similar to cut the taste.
Well, tonic water is quinine, and plaquenil is quinine. So instead of increasing my plaquenil intake, I'm assuming this is the next best thing. And you know what? The large bottles of tonic water are pretty inexpensive.
Feeling somewhat better this week. Maybe I was just tired -- after all, any 71 year old woman gets tired every now and then. The other symptoms were so minimal, there was no reason to worry.
So I've been drinking my tonic water every night -- about a half glass with lemon juice, and I'll tell you something.....it's still bitter.
Excuse me. I'm going to the liquor store for gin.
<Lupus
Since I had a rheum appt. in the next few days, I let it go and didn't panic. I got my lab work done on Friday before my appt. on Monday afternoon, and I asked them to send the results asap to my rheumy.
Arrived at his office, and no lab results. He checked me over, and of course the skin issues had disappeared by that time. My knees weren't as swollen, either. So-- probably wasn't a flare, nothing to worry about. But then he suggested I might want to drink some tonic water every night....without the gin, of course. He suggested lemon juice or something similar to cut the taste.
Well, tonic water is quinine, and plaquenil is quinine. So instead of increasing my plaquenil intake, I'm assuming this is the next best thing. And you know what? The large bottles of tonic water are pretty inexpensive.
Feeling somewhat better this week. Maybe I was just tired -- after all, any 71 year old woman gets tired every now and then. The other symptoms were so minimal, there was no reason to worry.
So I've been drinking my tonic water every night -- about a half glass with lemon juice, and I'll tell you something.....it's still bitter.
Excuse me. I'm going to the liquor store for gin.
<Lupus
Wednesday, November 11, 2009
One More Time...Is It Life, or Is It Lupus?
I'm sure I've asked that question before. I've been living with lupus for over 21 years, now, having had the usual pain, fatigue, some skin problems, med reactions...you all know about that. I've been in remission for a long time, now, and intend to stay that way. (I can hear lupus snickering at me right now.) By taking my meds, avoiding stress as much as possible, and getting enough sleep and rest, I've had a "sor far, so good" attitude.
Until a couple of weeks ago. I began feeling kind of "lousy." Maybe it was a cold coming on. Not bad enough for it to feel like the flu, but enough to make me feel fatigued. I had some strange blister-type things in my hair and along my hairline around my face. Then I had some signs of pitacea (sp?) the little red dots that show up meaning you have had some kind of blood vessel burst. Just a few. On my left upper arm. On my right upper arm, I had a scaly patch that I unconsciously scratched until it bled. Just a little.
My knees started to hurt. Oh, my. Was I having a flare?
I had a rheumatologist appt. the next week, so after I got my lab work done, I felt sure something would show up indicating a little flare. I certainly wasn't imagining things, because with the increased brain fog, my imagination had gone on strike.
So it was with some kind of hope ---
oops. Computer cut off this really great post. But you get the idea.
<Lupus
Until a couple of weeks ago. I began feeling kind of "lousy." Maybe it was a cold coming on. Not bad enough for it to feel like the flu, but enough to make me feel fatigued. I had some strange blister-type things in my hair and along my hairline around my face. Then I had some signs of pitacea (sp?) the little red dots that show up meaning you have had some kind of blood vessel burst. Just a few. On my left upper arm. On my right upper arm, I had a scaly patch that I unconsciously scratched until it bled. Just a little.
My knees started to hurt. Oh, my. Was I having a flare?
I had a rheumatologist appt. the next week, so after I got my lab work done, I felt sure something would show up indicating a little flare. I certainly wasn't imagining things, because with the increased brain fog, my imagination had gone on strike.
So it was with some kind of hope ---
oops. Computer cut off this really great post. But you get the idea.
<Lupus
Saturday, October 31, 2009
Possibly a Flare?
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
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
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
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