I'm in a quandary. As usual. I'm faced with the prospect of flying to Phoenix, AZ to do a radio program promoting my newest book, Once a Brat, Always a Brat. It should be released any day, now, and coincidentally, BratCon Radio contacted me about coming out to give away six signed copies to call-ins. Not only for this book, but its companion novel, The Women of Camp Sobingo.
So why am I posting this news on my Lupus Blog? Well, I'm sure I'm having a bit of a flare right now. Who know what shape I'll be in on Nov. 17th, the day I'm flying out of DFW for Phoenix. I ache all over, as I usually do when flaring; I'm worried about the nosebleeds returning; my vision gets double on occasion; and my balance leaves a lot to be desired, since I'm kind of dizzy occasionally. I went to my office chair, preparing to slide into it, and nearly ended up on the floor. The desk chair swivels, ha ha. My head knew that, but my body forgot, so I stumbled a bit and fortunately recovered myself before I went splat on the floor. I did spill my insulated cup of ginger ale all over the desk; fortunately, none of it touched the laptop.
So no wonder I'm a bit apprehensive about going off somewhere and adding more stress to my life. I could have said NO. But I'm a writer, you see, and part of the writing experience is making public appearances, radio and tv shows, etc.
And admit it: It's an ego trip, to think that somebody WANTS you to talk about your work, and is willing to pay expenses for this unknown writer to add to his radio show. How could I not go?
I thought about contacting the Phoenix chapter of the Lupus Foundation of America, and I might still do that. But I already contacted a fellow Military Brat who used to live in this area, but who has moved to Phoenix. She says she'll be glad to hang out with me, and introduce me to her husband. This will no doubt remove any pre-show jitters so I'll be reasonably coherent when the red light goes on and we begin to air.
So, fellow lupies..... am I being too risky? Would you do it? I think I'm able to handle this flare, and maybe even recover from it before I board the plane, but I've been wrong before. In fact, I feel so bold at this point that I've signed on with a speaker's bureau which will involve out-of town travel. Must be the Military Brat in me, heh.
Okay, so far in this blog I've managed to write not only about lupus, but also about my newest book about Military Brats and my novel, which should have gone on other blogs. But it all intertwines,somehow.
Life is like that. Especially when you're a writer who has lupus and is a Military Brat and is learning the promotion business, too.
Yep, I'm going. Wish me luck.
Lupus
Thursday, October 28, 2010
Monday, October 25, 2010
New symptoms?
Okay, I posted the other day about my trip to the ER because of nosebleeds. Heh. I KNOW what to do to STOP nosebleeds; what I want is WHY DO I HAVE THEM, ANYWAY?
The teenage ENT doctor removed the packing, five days after the ER doc inserted it into my right nostril, and he told me the same thing....how to stop a nosebleed. Well, I really got annoyed that he probably hadn't even looked at the 4 pages of information I had filled out while waiting for him. My entire medical history, and that of most of my ancestors, too.
So he had no idea that I am a lupus patient, and wanted to know WHY I had nosebleeds in the first place. And, why didn't I just ask him? Heh again. He was in and out in a flash, and his demeanor suggested to me that he didn't want to talk to me other than tell me the ways to stop nosebleeds. Sigh.
He probably wouldn't have known, anyway. That's my rheumatologist's area of expertise. I think. Anyway, I have had so many weird symptoms lately that I've made an appointment with a neurologist. This was at the urging of my fellow LUPIES on the yahoo group of the same name. If you're not in that group, join. I get more information from this group of (mostly) women than I ever have had from a rheumy. If my lab tests "look good" to him, then I'm not experiencing a flare, I think his opinion must be.
However, when I go to see him on Nov. 11th, I'll certainly tell him of the latest round of strange events going on in my pain-wracked body. (My knees are hurting today; humid weather does that to my joints.)
Okay, besides the nosebleeds, which my LUPIES bunch told me is a sign of a flare, AND it could be neurological. This along with:
1. eyelid twitching --- nearly all day, nearly every day. For a while, I was spared that annoying symptom, but the nosebleed issue took its place, I think.
2. My painless migraines, or optical migraines, where I get a nice "halo" effect in one of my eyes. No headache, no uopset stomach or aversions to light or noise, just the aura. This could be dry eyes due to Sjogren's, and I use eye drops at least twice a day (even though I think I'm supposed to use them 4 times a day, but I doubt they would help, either.
3. Episodes of being dizzy, like I'm spinning, even when I'm seated. Scary to think I might faint, but I don't. And it goes away in a few seconds, but what if it happens when I'm driving? My eyes kind of hurt, or go out of focus a bit, like I'm going to have double vision any minute.
4. The nosebleeds were not just ordinary red spots that oozed from my nose....Nosireee, what I saw on the tissue was dark red, big chunks of blood, and that's scary. Trying to hold your nostrils shut is a daunting challenge, knowing that something very strange is going on. Sure, it finally stops,but a few minutes or a few hours pass, and there it is again.
To add insult to injury, I read on the Internet about nosebleeds that they're common to "elderly" persons. Elderly? Me? Well, yeah, I'm 72, but how old do you have to be to be classified as "elderly?" Probably 10 years older than I am, I pout.
So what to do? Just keep marking down my vague symptoms, wondering if these are anything significant to a lupus person, as in a flare?
I do know one thing....I'm keeping the appointment with the neurologist.
The teenage ENT doctor removed the packing, five days after the ER doc inserted it into my right nostril, and he told me the same thing....how to stop a nosebleed. Well, I really got annoyed that he probably hadn't even looked at the 4 pages of information I had filled out while waiting for him. My entire medical history, and that of most of my ancestors, too.
So he had no idea that I am a lupus patient, and wanted to know WHY I had nosebleeds in the first place. And, why didn't I just ask him? Heh again. He was in and out in a flash, and his demeanor suggested to me that he didn't want to talk to me other than tell me the ways to stop nosebleeds. Sigh.
He probably wouldn't have known, anyway. That's my rheumatologist's area of expertise. I think. Anyway, I have had so many weird symptoms lately that I've made an appointment with a neurologist. This was at the urging of my fellow LUPIES on the yahoo group of the same name. If you're not in that group, join. I get more information from this group of (mostly) women than I ever have had from a rheumy. If my lab tests "look good" to him, then I'm not experiencing a flare, I think his opinion must be.
However, when I go to see him on Nov. 11th, I'll certainly tell him of the latest round of strange events going on in my pain-wracked body. (My knees are hurting today; humid weather does that to my joints.)
Okay, besides the nosebleeds, which my LUPIES bunch told me is a sign of a flare, AND it could be neurological. This along with:
1. eyelid twitching --- nearly all day, nearly every day. For a while, I was spared that annoying symptom, but the nosebleed issue took its place, I think.
2. My painless migraines, or optical migraines, where I get a nice "halo" effect in one of my eyes. No headache, no uopset stomach or aversions to light or noise, just the aura. This could be dry eyes due to Sjogren's, and I use eye drops at least twice a day (even though I think I'm supposed to use them 4 times a day, but I doubt they would help, either.
3. Episodes of being dizzy, like I'm spinning, even when I'm seated. Scary to think I might faint, but I don't. And it goes away in a few seconds, but what if it happens when I'm driving? My eyes kind of hurt, or go out of focus a bit, like I'm going to have double vision any minute.
4. The nosebleeds were not just ordinary red spots that oozed from my nose....Nosireee, what I saw on the tissue was dark red, big chunks of blood, and that's scary. Trying to hold your nostrils shut is a daunting challenge, knowing that something very strange is going on. Sure, it finally stops,but a few minutes or a few hours pass, and there it is again.
To add insult to injury, I read on the Internet about nosebleeds that they're common to "elderly" persons. Elderly? Me? Well, yeah, I'm 72, but how old do you have to be to be classified as "elderly?" Probably 10 years older than I am, I pout.
So what to do? Just keep marking down my vague symptoms, wondering if these are anything significant to a lupus person, as in a flare?
I do know one thing....I'm keeping the appointment with the neurologist.
Monday, October 18, 2010
What to Wear to the ER
Inquiring minds want to know. What do you do when you have to make a mad dash to the ER? After all, you've followed your mother's dictum from when you were a kid: "Always wear clean underwear in case you have to go to the Emergency Room."
To that universal admonition, I'll add another: "And be sure your bra straps don't have safety pins."
Okay, so Friday, I was dressed in clean underwear and no safety pins in my bra, when I encountered yet another nosebleed. This had been happening since Wednesday afternoon, off and on.
I called my doctor's office,not so much to find out how to stop the gusher, I was doing very well at stopping the flow, thank you very much,but I wanted to know how to prevent them from happening. Doctor's office was so backed up the answering service answered. I wanted to talk to my doctor NOW. Couldn't help me, there. So I held on while I had a bloody tissue to my nose, and when the receptionist finally answered, I blurted it out: "I have been having nosebleeds for a couple of days. Can I come in and see the doctor?" She didn't hesitate. "Go to the ER right away."
Okay, I'll do that. But first, I looked at what I was wearing: mismatched top and pants. I love the pants; they're cool and comfy, but the mismatched top had to go. I rummaged around in my closet and found a top that was in the same color chart and put it on.
Then I got my son to take me to the ER.
After all, I didn't want to be talked about later...."Did you see what she had on?"
"Well, no. But did she have on clean underwear and no pins in her bra?"
"Yeah."
"Then that's okay."
So they tell me.
What the heck did they do in the ER, you ask? Well, first the doctor gave me a nasal spray cause he thought my nasal passages were dry. I waited a while for him to dismiss me, and sure enough, SPURT. more blood gushing. Son summoned the ER doc, who said, "Okay, it's a good thing you hadn't left yet, right?" I nodded while holding a gauze pad on my nose.
"We'll put a balloon up your nose," he said. HUH? Then he showed me what looked like, essentially, a tampon, with a tube at the end that would remain outside my nostril. Then he proceeds to put it way up into my right nostril, to the point where I'm almost groaning and wincing. "Now, we leave this in for a few days and it will form a clot. An ENT doctor will have to remove it and then cauterize the wound."
I then got a referral to an ENT doctor, a prescription for antibiotics, and I was dismissed.
I have become a mouth-breather. I don't like that at all. But it's coming out tomorrow, thank God.
So why the nosebleeds? Best guess amongst my lupus support group is that I'm having a flare, with neurological involvement. Oh, fine.
I have been having some double vision, eyelid twitching constantly, and a tingling on my right hand, near my pinkie finger. I have an appointment with a neurologist for Dec. 2nd, thank goodness.
Then again, it might just be "common for the elderly."
But this elderly person was at least dressed for the occasion.
Lupus
To that universal admonition, I'll add another: "And be sure your bra straps don't have safety pins."
Okay, so Friday, I was dressed in clean underwear and no safety pins in my bra, when I encountered yet another nosebleed. This had been happening since Wednesday afternoon, off and on.
I called my doctor's office,not so much to find out how to stop the gusher, I was doing very well at stopping the flow, thank you very much,but I wanted to know how to prevent them from happening. Doctor's office was so backed up the answering service answered. I wanted to talk to my doctor NOW. Couldn't help me, there. So I held on while I had a bloody tissue to my nose, and when the receptionist finally answered, I blurted it out: "I have been having nosebleeds for a couple of days. Can I come in and see the doctor?" She didn't hesitate. "Go to the ER right away."
Okay, I'll do that. But first, I looked at what I was wearing: mismatched top and pants. I love the pants; they're cool and comfy, but the mismatched top had to go. I rummaged around in my closet and found a top that was in the same color chart and put it on.
Then I got my son to take me to the ER.
After all, I didn't want to be talked about later...."Did you see what she had on?"
"Well, no. But did she have on clean underwear and no pins in her bra?"
"Yeah."
"Then that's okay."
So they tell me.
What the heck did they do in the ER, you ask? Well, first the doctor gave me a nasal spray cause he thought my nasal passages were dry. I waited a while for him to dismiss me, and sure enough, SPURT. more blood gushing. Son summoned the ER doc, who said, "Okay, it's a good thing you hadn't left yet, right?" I nodded while holding a gauze pad on my nose.
"We'll put a balloon up your nose," he said. HUH? Then he showed me what looked like, essentially, a tampon, with a tube at the end that would remain outside my nostril. Then he proceeds to put it way up into my right nostril, to the point where I'm almost groaning and wincing. "Now, we leave this in for a few days and it will form a clot. An ENT doctor will have to remove it and then cauterize the wound."
I then got a referral to an ENT doctor, a prescription for antibiotics, and I was dismissed.
I have become a mouth-breather. I don't like that at all. But it's coming out tomorrow, thank God.
So why the nosebleeds? Best guess amongst my lupus support group is that I'm having a flare, with neurological involvement. Oh, fine.
I have been having some double vision, eyelid twitching constantly, and a tingling on my right hand, near my pinkie finger. I have an appointment with a neurologist for Dec. 2nd, thank goodness.
Then again, it might just be "common for the elderly."
But this elderly person was at least dressed for the occasion.
Lupus
Thursday, August 19, 2010
Too Many Moving Parts....
It's been a while since I've posted here. Or anywhere else, for that matter. I've been busy with other projects, most notably working on my historical novel, plotting my new Lupus Book, which is a re-write of my first lupus book, adding others' experiences to my own.
And my mother is coming to town on Saturday to celebrate her 90th birthday, meaning I had to clean up the hovel a bit, change the sheets in the guest room so they would be nice and fresh, and generally, fret about picking her up at the airport. We're all going to her favorite Mexican food restaurant on Saturday night, and on Sunday we'll be going to Frisco TX to see the new baby in the family.
Sounds daunting, even if you don't have lupus, doesn't it? And with my auto-immune disease, I need to take good care of myself, and rest when I can. Stay away from stress....heh. Besides all this birthday bash stuff, I'm gearing up to fly to CA to visit my daughter for her birthday. And I hate flying. No stress there, lol. And once I get there, I have to face flying back home.
<Lupus
And my mother is coming to town on Saturday to celebrate her 90th birthday, meaning I had to clean up the hovel a bit, change the sheets in the guest room so they would be nice and fresh, and generally, fret about picking her up at the airport. We're all going to her favorite Mexican food restaurant on Saturday night, and on Sunday we'll be going to Frisco TX to see the new baby in the family.
Sounds daunting, even if you don't have lupus, doesn't it? And with my auto-immune disease, I need to take good care of myself, and rest when I can. Stay away from stress....heh. Besides all this birthday bash stuff, I'm gearing up to fly to CA to visit my daughter for her birthday. And I hate flying. No stress there, lol. And once I get there, I have to face flying back home.
So, I've learned all the "rules" for living with lupus. I know what to do. But when life is so full of challenges, it's another stressor.
Fibromyalgia has reared its ugly head recently, too. As if I don't have enough to cope with. My rheumy suggested I increase the Flexeril at night, and it seems to be helping. I'm supposed to call him next week (It will be two weeks, then, since he suggested that) and let him know how that's working. He also prescribed a pain patch, which I have yet to pick up at the pharmacy. It might work on my arms, which hurt after a full day at the keyboard. Maybe I should give up on the other mantra in my life: BICHOK -- butt in chair, hands on keyboard. At least, not so often. Yeah, right.....:)
<Lupus
Sunday, June 27, 2010
A High Maintenance Woman
I'll admit it. I am one of those High Maintenance Women. Not so much in my demands for attention, or "the finer things of life" like jewelry, furs and expensive cars. No, my tastes are much more simple than that.
I'm referring to high maintenance as affording the many prescriptions I have to have every day. These are not frivolous "recreational drugs" or sexual enhancement products. These are life-sustaining and pain-reducing prescriptions used to keep lupus in remission and keep me out of all kinds of pain. '
I've been on many more medications in the past than the few I have right now. At that, it's an expensive pharmacy bill every month, just for Plaquenil, Furosimide, Rampiril and thyroid medication. Cymbalta for depression and fibromyalgia and flexeril to sleep. Plus over-the-counter Vitamin D and B-12. Not to mention my diabetes prescriptions: Humalog and Lantus. And the paraphernalia with which to use those meds: Diabetes testing strips, monitor, lancets and syringes. Each test strip is approximately $1.00, so I have to be careful with them and make sure I pull up enough blood on my finger so it will register on the test strip instead of giving me an error message. And I test 3-4 times a day, and inject insulin many of those times, plus 50 units of lantus at night. Neither humalog nor lantus is cheap, by any means.
I can't skip my thyroid med; I don't have a thyroid any more, since it was dissolved many years ago after a bout with hyperthyroidism. I can't do without my Plaquenil, since it seems to be doing its job of keeping lupus in remission, or at least, not in a really bad flare. I certainly need Cymbalta, having tried several types of antidepressants, and lucky me, I respond only to the certain combination used in Cymbalta. I'm soooo special.
Along with my lupus meds, I need to use a tartar-control toothpaste, available only from my dentist, since I also deal with Sjogren's Syndrome. My mouth is constantly dry, as are my eyes. Oh, yeah, I forgot eye drops, 4 times a day. Not prescription, but I'm sure that's coming.
So that's what I mean about being a high-maintenance woman.
Any prospective husband should know this from the get-go. (As if they were standing in line to meet me, lol.)
But, I'm worth it.
And I'm modest, too.
<Lupus
I'm referring to high maintenance as affording the many prescriptions I have to have every day. These are not frivolous "recreational drugs" or sexual enhancement products. These are life-sustaining and pain-reducing prescriptions used to keep lupus in remission and keep me out of all kinds of pain. '
I've been on many more medications in the past than the few I have right now. At that, it's an expensive pharmacy bill every month, just for Plaquenil, Furosimide, Rampiril and thyroid medication. Cymbalta for depression and fibromyalgia and flexeril to sleep. Plus over-the-counter Vitamin D and B-12. Not to mention my diabetes prescriptions: Humalog and Lantus. And the paraphernalia with which to use those meds: Diabetes testing strips, monitor, lancets and syringes. Each test strip is approximately $1.00, so I have to be careful with them and make sure I pull up enough blood on my finger so it will register on the test strip instead of giving me an error message. And I test 3-4 times a day, and inject insulin many of those times, plus 50 units of lantus at night. Neither humalog nor lantus is cheap, by any means.
I can't skip my thyroid med; I don't have a thyroid any more, since it was dissolved many years ago after a bout with hyperthyroidism. I can't do without my Plaquenil, since it seems to be doing its job of keeping lupus in remission, or at least, not in a really bad flare. I certainly need Cymbalta, having tried several types of antidepressants, and lucky me, I respond only to the certain combination used in Cymbalta. I'm soooo special.
Along with my lupus meds, I need to use a tartar-control toothpaste, available only from my dentist, since I also deal with Sjogren's Syndrome. My mouth is constantly dry, as are my eyes. Oh, yeah, I forgot eye drops, 4 times a day. Not prescription, but I'm sure that's coming.
So that's what I mean about being a high-maintenance woman.
Any prospective husband should know this from the get-go. (As if they were standing in line to meet me, lol.)
But, I'm worth it.
And I'm modest, too.
<Lupus
Wednesday, June 23, 2010
Men Have Lupus, Too.
Poor guys. I give them short shrift, when I write about SLE. Using the female pronouns "she" and "her" I forget that men can also suffer from this disease.
And, Lord help me for making this comment, it's been my experience in seeing male lupus patients, they REALLY get it bad. Why is this?
I have personally known two men who have lupus, and they both are not doing well at the moment. Let me tell you about one of them: "Joe" came in from playing golf one day, sunburned as a lobster. He soon began to exhibit symptoms that sent him to the emergency room. Barely lucid, he answered their questions and he was admitted. Test after test, all the while he was suffering from severe sunburn, itching and a general feeling of overwhelming fatigue.
He was lucky. He was diagnosed while still in the hospital as having SLE -- Lupus. Treatment started immediately. Even so, he lost his job because he couldn't function physically or mentally. He's not the same man he used to be. His wife is at a loss as to how her husband could go out one day fully healthy and a week later be incapacitated.
Now maybe he had exhibited some symptoms before that incident. Maybe he hadn't felt fully well for a while, with some aches and pains, but had brushed them off, as most of us would do. Loathe to go to the doctor, he pushed everything away, until his body broke down.
I'm not saying the outcome would have been any different had he gone to the doctor for tests for his somewhat vague symptoms. But I'm betting that he, being of the male persuasion, would have received more rigorous, more serious investigation and probably diagnosed sooner. Then he might not have gone out in the blazing sun to play a round of golf.
I'm just sayin'......
I'll try to keep in mind this isn't JUST a woman's disease.
<Lupus
And, Lord help me for making this comment, it's been my experience in seeing male lupus patients, they REALLY get it bad. Why is this?
I have personally known two men who have lupus, and they both are not doing well at the moment. Let me tell you about one of them: "Joe" came in from playing golf one day, sunburned as a lobster. He soon began to exhibit symptoms that sent him to the emergency room. Barely lucid, he answered their questions and he was admitted. Test after test, all the while he was suffering from severe sunburn, itching and a general feeling of overwhelming fatigue.
He was lucky. He was diagnosed while still in the hospital as having SLE -- Lupus. Treatment started immediately. Even so, he lost his job because he couldn't function physically or mentally. He's not the same man he used to be. His wife is at a loss as to how her husband could go out one day fully healthy and a week later be incapacitated.
Now maybe he had exhibited some symptoms before that incident. Maybe he hadn't felt fully well for a while, with some aches and pains, but had brushed them off, as most of us would do. Loathe to go to the doctor, he pushed everything away, until his body broke down.
I'm not saying the outcome would have been any different had he gone to the doctor for tests for his somewhat vague symptoms. But I'm betting that he, being of the male persuasion, would have received more rigorous, more serious investigation and probably diagnosed sooner. Then he might not have gone out in the blazing sun to play a round of golf.
I'm just sayin'......
I'll try to keep in mind this isn't JUST a woman's disease.
<Lupus
Tuesday, June 15, 2010
How to Help a Lupie
One of the obstacles we who have lupus have to overcome is doubt. Not only self-doubt, such as: Do I really have lupus? Will I never get better? How am I supposed to raise my family when I'm so tired? but also family and friends who doubt the validity of our claims that we are, indeed, sick.
"But you don't look sick" is a phrase we hear many times. No doubt meant to cheer us up, instead it sets us up for more doubts. The person I'm married to doesn't believe me; my friend thinks I'm pretending to have this disease; my kids don't understand why I can't sit in the bleachers for their baseball games....and on and on.
So, if you are a friend or relative or a loved one of a lupie, let me set out some suggestions:
1. Hard as it is, accept the diagnosis. Or the non-diagnosis, as the case may be. Many times, we who do have this illness don't have a "real" diagnosis from a doctor. Just a vague, mixed-connective tissue disorder, or fibromyalgia, or chronic fatigue syndrome, and on and on with non-specific words written in a chart, and the patient is left believing she is imagining things. Being a hypochondriac. Wanting to get out of hard work either at the office or at home. Looking for sympathy. I will tell you that the last, looking for sympathy, is almost correct, but I'd change the word to "empathy."
Think about the last time you had the flu. You ached all over. Your body screamed at you every time you moved. You could hardly get out of bed, let alone dress and go to the office. This is similar to what a lupie feels every day. Really. Hurting, fatigued even after sleeping all night, your loved one claims she can hardly get around the house without hurting, or her fatigue level is such that it takes every effort she has just to get out of bed. Believe her. She really doesn't want to feel this way. But she does.
2. Pull up the slack a bit, if you can. If the house is cluttered with the kids toys, either pick them up yourself or get the kids to do it. I know, I know, you're the man of the house, and it's not your job to pick up toys, or wash the dishes, or put a load of clothes in the washer. Your wife would do them if she only could, and it hurts her to ask for help, or when she tries to do it herself, she hurts even more. So ask what you can do to help.
3. Don't try to "fix" a lupie. We have heard every "cure" imaginable, and some that might actually harm us if we tried them. I had a very good friend who was determined that I should get better, so she dropped off a huge bag full of echinacea, "to boost your immune system." I had to tell her, "I can't have my immune system boosted; that's what's the problem. I have too much of an immune system." Please don't tell us of a marvelous new juice you found on a health product site, and it's guaranteed to "cure" lupus. There is no cure. Only treatment.
4. Along that line, please don't "guilt" us by telling us, "If you hadn't smoked; if you had only not used sugar substitutes like sacharin; if you hadn't stressed out so much over your divorce" you wouldn't be sick now. That doesn't help us either. Would you say the same things to a person who has cancer? No? Well, then why say it to us?
5. Forgive us if we feel good enough one day to plan for an event with you three weeks away, and when the time comes, we are flat on our backs with another lupus flare and we can't go. We can't always rely on good days. We are subject to sudden changes in our health in many different ways. And that goes for "normal" people, too, you know. Say you've planned to go to a play or concert and at the last minute, you come down with a nasty cold. Since you don't think you should cough and hack your way during the performance, you choose to stay home. We are the same way. Some days you're the bug, some days you're the windshield.
6. When you ask us how we're doing, accept the answer, no matter what it is. It could be "Fine" or "Not too good today" or "**&&^%$ are you asking me this **&&^^%$ for?" The last answer might be the most honest one, by the way, but the other more vague responses can also be how the lupie is feeling at any given moment.
This is by no means a complete list of suggestions. Think of your own ways you could give aid and comfort to this person who happens to be stricken with a case of "weird-itis." Try to keep a sense of humor about you. Name the enemy, lupus. My name for her is **&&^^%%%##@@, or "that bitch" for short.
Thank you. I feel better, now.
<Lupus
"But you don't look sick" is a phrase we hear many times. No doubt meant to cheer us up, instead it sets us up for more doubts. The person I'm married to doesn't believe me; my friend thinks I'm pretending to have this disease; my kids don't understand why I can't sit in the bleachers for their baseball games....and on and on.
So, if you are a friend or relative or a loved one of a lupie, let me set out some suggestions:
1. Hard as it is, accept the diagnosis. Or the non-diagnosis, as the case may be. Many times, we who do have this illness don't have a "real" diagnosis from a doctor. Just a vague, mixed-connective tissue disorder, or fibromyalgia, or chronic fatigue syndrome, and on and on with non-specific words written in a chart, and the patient is left believing she is imagining things. Being a hypochondriac. Wanting to get out of hard work either at the office or at home. Looking for sympathy. I will tell you that the last, looking for sympathy, is almost correct, but I'd change the word to "empathy."
Think about the last time you had the flu. You ached all over. Your body screamed at you every time you moved. You could hardly get out of bed, let alone dress and go to the office. This is similar to what a lupie feels every day. Really. Hurting, fatigued even after sleeping all night, your loved one claims she can hardly get around the house without hurting, or her fatigue level is such that it takes every effort she has just to get out of bed. Believe her. She really doesn't want to feel this way. But she does.
2. Pull up the slack a bit, if you can. If the house is cluttered with the kids toys, either pick them up yourself or get the kids to do it. I know, I know, you're the man of the house, and it's not your job to pick up toys, or wash the dishes, or put a load of clothes in the washer. Your wife would do them if she only could, and it hurts her to ask for help, or when she tries to do it herself, she hurts even more. So ask what you can do to help.
3. Don't try to "fix" a lupie. We have heard every "cure" imaginable, and some that might actually harm us if we tried them. I had a very good friend who was determined that I should get better, so she dropped off a huge bag full of echinacea, "to boost your immune system." I had to tell her, "I can't have my immune system boosted; that's what's the problem. I have too much of an immune system." Please don't tell us of a marvelous new juice you found on a health product site, and it's guaranteed to "cure" lupus. There is no cure. Only treatment.
4. Along that line, please don't "guilt" us by telling us, "If you hadn't smoked; if you had only not used sugar substitutes like sacharin; if you hadn't stressed out so much over your divorce" you wouldn't be sick now. That doesn't help us either. Would you say the same things to a person who has cancer? No? Well, then why say it to us?
5. Forgive us if we feel good enough one day to plan for an event with you three weeks away, and when the time comes, we are flat on our backs with another lupus flare and we can't go. We can't always rely on good days. We are subject to sudden changes in our health in many different ways. And that goes for "normal" people, too, you know. Say you've planned to go to a play or concert and at the last minute, you come down with a nasty cold. Since you don't think you should cough and hack your way during the performance, you choose to stay home. We are the same way. Some days you're the bug, some days you're the windshield.
6. When you ask us how we're doing, accept the answer, no matter what it is. It could be "Fine" or "Not too good today" or "**&&^%$ are you asking me this **&&^^%$ for?" The last answer might be the most honest one, by the way, but the other more vague responses can also be how the lupie is feeling at any given moment.
This is by no means a complete list of suggestions. Think of your own ways you could give aid and comfort to this person who happens to be stricken with a case of "weird-itis." Try to keep a sense of humor about you. Name the enemy, lupus. My name for her is **&&^^%%%##@@, or "that bitch" for short.
Thank you. I feel better, now.
<Lupus
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