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
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