Saturday, November 13, 2010


I had an appointment Thursday with my rheumy. I went armed with a list of all the strange symptoms that have been happening to me lately, with dates and time of day attached, just to be as precise as I can in detailing how many times a week I have eyelid twitching, dizziness, nosebleeds or double vision.

After listening carefully for a few moments, his response was: "Yes, you need to see a neurologist." I told him I already have an appointment.

Then we turned to my lab tests. He said all were unremarkable, but I had too much thyroid meds. I was stunned. I am taking the lowest doseage, and have been for years. I have no shaking, out of control eating and losing weight, all the warning signs I had years ago when my thyroid went on overdrive and I nearly had a stroke. My rogue thyroid was dissolved with radiation, and I've been taking replacement hormones since.

So what the heck is going on? Well, thanks to my lupies on the Internet and Google, we came top the conclusion that my pituitary was spitting out too much thyroid. And one possibility that it's acting up is that Imight have a tumor.

A benign tumor,to be sure, as they are rarely cancerous, but I can see how all the symptoms fit. Now I just need to make an appt. with my PCP to get her "take" on this, and to keep my Dec. 2nd appt. with the neurologist.

Knowledge is power. On the other hand, "a little knowlege is a dangerous thing."

I'm trying not to depend on guesswork right now. I just want all these wacky symptoms to stop. If surgery is required, I read that the surgeon can go into the brain from the nose.

Wow. Modern medicine. But I'm still not there, yet. Just getting some information.

Even as I type this, another wave of dizziness has washed over me. Doesn't last long; I don't faint; I can keep my equilibrium and it soon passes. And, oh, yeah, the aura in my eyes. Often and lasting longer than they used to.

Oh, well. Can't do anything about any of this today. Just keep on keepin' on.

Maybe all this will stop as suddenly as it started.

We can still hope.

Thursday, November 11, 2010

Cognitive Issues -- Or Old Age?

I got a call last week from one of my friends, Judy, inviting me to a party at her house on the 11th. I dutifully accepted the invitation and marked it on my calendar. I thought she sounded kind of vague about details (what time, should I bring something? etc) but chalked that up to her being in a hurry.
So this morning -- the 11th, I call my friend Joyce who is one of those invited, and asked her if she would be going tonight. There was dead silence on the other end of the line.
Finally she stuttered, "I thought it was December 11th!" Then she said, "If it is today, I can't go because I'm feeling lousy."
So I thought I should call Judy and ask her when the party was....
And she said December 11th. Then she graciously said, laughing, that she "might have said November 11th, so don't worry about it, and you can still come over."
I called Joyce back and told her it was next month.
I've got to stop doing things like that.
Today is my rheumy appointment that I showed up for LAST month. That much I'm sure about. (I think.)

Tuesday, November 2, 2010

It's Raining, and my body doesn't like it....

I almost dread the coming snow and ice season. I do bad enough in the rain, when my body reacts to the barometric pressure changes and makes my knees, wrists and neck ache all the time. So what's a Lupie to do?

Well, I could move to a dry climate.

I could take expensive drugs to dull the pain.

Or, I could just grin and bear it. Which I most often do. There's only so many medications I can take that won't interfere with my prescribed meds. So I usually take OTC meds, the cheaper the better. The Wal-Mart Pharmacy aisle is my friend.

I was told once that I should take a natural pain reliever: White willow bark.

Okay, I thought. I'll go see about it. In the olden days, white willow bark was used to treat any kind of inflammation. A "natural" aspirin, as it were.

However, I look at the Health Food Product: White Willow Bark, and it's sky high priced, like a 30 day supply for $30.00.

Then I mosey over to the aisle that has OTC products and look at a large bottle of aspirin. 100 aspirin for $4.00. I'm exaggerating, of course, but I don't really remember the costs involved.

Guess which one I chose?


Monday, November 1, 2010

I Was Asled to Share This.....


Film Lands International Distribution Deal With Synergetic

NEW YORK, NY, November 1, 2010 – Your Indie Films/Synergetic Distribution has acquired worldwide distribution rights for the film Love Simple, directed by Mark von Sternberg. The film will be available for purchase internationally on Tuesday, November 9, and 10% of the proceeds of the film will benefit the world renowned Lupus Research Institute.

The DVD version of the film will be made available through several worldwide online venues including:, (Barnes and Noble),, and

Hailed by Variety as an “engaging neighborhood pic...with genuine flair and wit,” Love Simple is a coming-of-age romance where the lead character Seta falls in love after meeting, Adam (Francisco Solorzano) in a Brooklyn Laundromat; however, both must deal with lies and personal situations in order for their relationship to survive -- he lives at home caring for his sick father, and she has suffered from lupus her entire life.

“It made sense for us to help shine a light on lupus and raise funds for this vital organization, particularly in this year that saw lupus frequently in the news with Lady Gaga announcing a borderline diagnosis, and the heart-warming story of Snoop Dog’s daughter’s battle with the disease,” states von Sternberg. “Based on the overwhelming response we’ve received from the lupus community, the film accurately shows the often misunderstood symptoms and issues associated with lupus.”

In addition to Variety, the film has received glowing reviews from nearly a dozen lupus and chronic illness bloggers (see below), and will be featured as the lead story in the November issue of The Lupus Magazine, an online, world-wide publication for the lupus community.

“Based on the positive buzz the film has generated so far, pre-sales of the film have been strong,” said Robert Rangel, of Your Indie Films/Synergetic. “We look forward to working with the Love Simple team on helping spread the word about this wonderful film, and its efforts on raising awareness and funds for lupus research.”

The Lupus Research Institute (LRI) is the world’s leading private supporter of innovative research in lupus, and champions scientific, creativity and risk-taking in the hunt for solutions to this autoimmune disease. The LRI’s research strategy and results are changing the course of lupus research and bringing new hope to people with lupus around the world.

For more information about the film, visit, or become a fan on Facebook at www.facebook/lovesimplemovie. For more information about the Lupus Research Institute visit For more information about Your Indie Films/Synergetic Distribution visit

Reviews of the film "Love Simple":

"An engaging neighborhood pic, with genuine flair and wit. The obstacles along the central duo's rocky road to coupledom are untraditionally somber: She has lupus, he's stuck at home caring for his wheelchair-bound father." Variety

"Definitely recommended...a great film helping a great foundation." Geoff Thomas, editor, The Lupus Magazine

“The inspiring and engaging film is a realistic portrayal of a lupus patient, and will serve as an invaluable way for us to raise awareness of a disease that is a leading cause of heart attack, kidney disease, and stroke among young women.” Margaret G. Dowd, Executive Director, S.L.E. Lupus Foundation.

"This movie is sorely needed. Love Simple is a huge gift, not only for Lupus sufferers but for their families and friends, and the world. Beautifully filmed, it is the first easily accessible media piece that I have seen to actually bring real awareness to Lupus." Julia Sherred, editor,

"A movie whose female lead has lupus - which may be the first of its kind! Check out their website. And spread the word!"

"I think it is very relatable for many people. It deals a lot with dating, relationships, and family difficulties that can come with Lupus. I thought it was pretty accurate in its portrayal of Lupus."

"I just…watched the movie "Love Simple"... I loved it...It's definitely a great lupie movie."

"I absolutely loved the film!" Matthew Sapp, editor,

"The producers and directors did a GREAT JOB!!!!!" Jennifer Morrison, editor,

Thursday, October 28, 2010

To Fly or Not to Fly.....

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.

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 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?"
"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.

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.
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.....:)


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.


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.


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.


Thursday, June 10, 2010

Jaw Pain

There's never a dull moment when you have SLE - Lupus. It's all about putting out brush fires.
My UTI incident has taken leave, thank God, but now I'm experiencing some pain in my jaws. I have TMJ, anyway, and my dentist has a terrible time with me not being able to hold my mouth open long enough for him to do some work in my mouth. We've worked out a code that when I need to close my jaws, I will hold up my hand and he'll stop drilling/poking/scraping/whatever in my mouth long enough for me to close my mouth and let my jaws relax. Just for a minute or so, and then back we go.
Right now, though, this is not regular TMJ pain. It's more like -- oh, I dunno -- arthritis pain, with a bit of tingle thrown in for good measure. It's kind of near my ear, and feels a bit swollen, so I've taken some Sudaphed to release my sinus congestion, and that seems to help for a while.
Then, it's back. It's not bad enough to require heavy-duty pain meds; heck, Aleve is strong enough for me to require a nice little nap after I take one, and the pain is certainly lessened for a good while.
But I want the pain to stop.
To go away. Forever. I don't want to have to treat this new symptom just after finishing with another. Can't a gal get a break? Evidently not.
I'd go whine to my doctor, but I'd rather not. It's not that bad, and I think it will go away on its own in a day or two, after another bout with Aleve.
And it might not be related to Lupus, after all. Other folks get pains in their jaws without blaming it on a medical condition such as lupus. I realize Sjogren's syndrome could be the culprit, but the remedy for that is rather non-specific and not really that serious right now. If it gets worse, of course, I'll do some Google searching on Sjogren's and the salivary glands near the ear, and take it from there. And of course, if it suddenly gets too painful to manage, I'll go to the ER.
They know me well at the ER.
I've labeled myself, if the ER personnel hasn't, a "Frequent Flyer."


Wednesday, June 2, 2010

Lady GaGa and Lupus?

Enough, already with the "news" that this entertainer "might" have lupus. Her interview with Larry King recently shed no new light on her "condition."

That's probably a good thing, in my opinion. I mean, those of us who suffer from SLE or lupus are kind of like Rodney Dangerfield: We don't get no respect.

I mean, we don't look sick. Nobody really understands what this aut0immune disorder is doing to our insides while our outsides look disgustingly healthy -- meaning, mostly, FAT. Yeah, we are mostly plump, at least while we are taking corticosteroids. They relieve the swelling that causes us such pain, all right, but they promote uncontrollable eating, like there is no tomorrow. When I was taking cortisone, my doctor commented on my rapid weight gain. "What can I do to prevent this?" I asked innocently.

His reply: "Padlock the refrigerator." Huh. Fat lot of good (pardon the pun) that did. It's one of those "You pays your money and you takes your choice" -- either hurt or gain weight.

If Lady GaGa does have lupus, and undergoes treatment, can you imagine what she would look like? No more svelte figure clad in skin-tight costumes. Puffy face looking like a chipmunk who has stored all his winter nuts in his cheeks. Despite the euphoria steroids can bring, there is also an unrelenting fatigue, so she won't be able to circle in the air while singing upside down any more. Or even get out of bed, for that matter.

No, I don't wish her to have lupus, despite my being so snarky. I wouldn't wish our disease on anybody, and I said the same thing when it was rumored that Michael Jackson had lupus. I'm just saying, I wouldn't want a celebrity that is so "out there" in appearance and lifestyle to be our spokesperson, ostensibly representing us common folk. We're misunderstood enough, without the vision of "strange" being added to the perception.

Yet who should represent us? I'd like to see a really famous person with lupus stand up for us. I mean, a "normal" person, like --- well, like me. Some people who know me well might argue that I'm not entirely "normal" but at least I'm not one who is in the celebrity spotlight for performing in sequins or upside down on a trapeze.

But I could do it. I could get famous from -- well, writing and selling my books by the millions. Then I could report that, uh, I actually have systemic lupus erythematosus, and I'd be interviewed and would give honest, heart-felt answers to reporters questions.

So please help me in my campaign to represent all lupus sufferers by doing the following:

Buy my books. Go to my website: and buy:

Sabbath's Gift; Sabbath's House; The Women of Camp Sobingo; Forces of Nature; and My Ashes of Dead Lovers Garage Sale. All from Vanilla Heart Publishing. Two other books, non-fiction, are available on Once a Brat, the story of my life as a Military Brat; and Diagnosis:Lupus: The Intimate Journal of a Lupus Patient. I'm re-writing both of those books, btw and they will be under the Vanilla Heart imprint like the others.
Buy for everybody you know, for birthdays, Christmas, Mothers Day, any holiday. Graduates might like copies. Newlyweds might appreciate something to read on their honeymoon. Email everybody you know and browbeat them into buying multiple copies of my books. Better yet, if you have Hollywood connections, tell them my books would make great movies or made for t.v. series. Flood with reviews of all my books listed there, and send copies directly to everyone you know plus your mailman, your favorite store get the idea.

Then, when you see my shiny, round little face on a Lupus Foundation Public Service Announcement, you can turn to your companions (if you have any left!) and brag: "I knew her before she got famous."



Friday, May 21, 2010

Change in Meds....

I made an Executive Decision the other day, Monday to be exact. Sick and tired of feeling sick and tired, I called my psychiatrist (my, doesn't that sound pretentious?) and told her -- told her, not asked -- that I wanted to change from Pristiq back to Cymbalta.

She tried not to gasp as she asked, "But didn't we decide that Cymbalta was causing you some urine retention?"

"Yes. But it looks like the Pristiq is, too. But I felt so much better taking Cymbalta. So what's the difference? I'll let my other doctors take care of any other problems that come up." There, I had said it. Of course, the conversation ran a bit longer than that, as we discussed the pros and cons of switching yet another med. Finally, she took a deep breath and said:

"Well, all right. I'm sending your prescription to your pharmacy right now."

I picked up the prescription that afternoon and I am feeling better already.

You pays your money and you takes your choice.....


Saturday, May 15, 2010

Fever Continues

If there's one thing I know about lupus, it's that it's ever challenging. Take this latest fever (PLEASE) and how I'm trying to determine what the heck is causing it.
After I looked online with my Lupies buddies, I am just about to think it's either a flare that's beginning (due to inflammation somewhere) or I do have an infection of some kind that hasn't surfaced as pain yet, such as a urinary tract, bladder or sinus infection.
And if that's the case, then I should be able to control it by taking aspirin, right? Nope. Not knocking it. And I really, really don't like antibiotics: the last time I took Macrobid was for 30 days, and I was as limp as a rag doll the whole time. As if full-blown lupus isn't enough to make a person tired, then a regimen of anti-biotics really complicates things.
But I do have an appointment with my PCP on Thursday, May 27th. She is knowledgeable about lupus; in fact, she's the only one of my doctors who, in 1988, sent me next door to a rheumatologist for the dx. I have told her she can never retire.
Maybe she'll have some answers for me. Or by that time, the fever will be gone. (Sure. I'm such an optimist.)
In the meantime, I'll do the best I can. Lupus is such a drag!


Friday, May 7, 2010

Fever of Unknown Origin

The last couple of days have been yucky. That's a scientific term, you know. My own scientific term to describe when I'm feeling less than well, but not out and out sick.

I just got over a persistent urinary tract infection last month, after taking antibiotics for a solid month. The anti-biotics make me feel -- well, yucky --- too, so I was really not feeling up to par. Finally, finally, I began to feel better, and back to my old self again.

Then yesterday, I was getting a pedicure at my favorite salon. It was crowded, but I got right in and settled down with a book while the tech scrubbed, polished and massaged my tootsies. Ah, luxury.

I don't call this an indulgence, either, but a necessity. Besides having lupus, I was also gifted with Type 1 Diabetes, and that means I need to take care of my feet. Since I can't reach my toes any longer, I indulge myself at the local nail salon. Just my feet. I have yet to have a manicure there, believing I can do my fingernails myself. And I do.

While I was nearing nirvana, I began feeling a bit warm. The day was going to be in the 80s, so I figured the salon's a/c wasn't yet geared up for that temp. But I continued to feel warm even as I paid my bill and departed, flip-flops flipping and flopping out to my car.

Got home and checked the thermostat. It was set for warmer weather and running just fine. Okay, then, why do I feel so warm?

Heh. I also felt sleepy. Laid down on the couch and snoozed -- for about an hour. When I woke, I was even warmer.

So I took my temp. Normally, my temperature rarely gets above 97 degrees. So a "normal" temp of 98.6 is a fever for me. This time, my temperature read 99.7. A fever.

Okay. Time to hit the aspirin and get this temperature down. Don't know where it's coming from, but it's got to go.

Felt better, went to bed early, and got up this morning wondering if I had licked the fever.

Nope. And, my throat felt scratchy. And my ears hurt. Really hurt.

What the heck??? This is May, not December. I'm not supposed to have a sore throat and earaches in May! But have them, I do.

So I'm taking aspirin and taking it easy. We'll see how the next couple of days go. It's not always lupus, I realize. I can have a sore throat and earaches like any normal person, can't I?

We'll see. I'm getting the strange feeling that it might be swelling from a lupus flare that has hit my throat and ears.

Time will tell. In the meantime, it's a mean time.


Tuesday, May 4, 2010

Another Name for Lupus.....

I have read another name for lupus....somewhere. I don't know whom to credit, or blame, or where I saw it for that matter, but here is another name for SLE and I can certainly relate to it: "Come and Go Weird-Itis."
That explains it for me today, at least. I wake up in a whole new world every day. Will I be able to get out of bed? Hmmmm. Yeah, today I did.
Will I be able to put on the coffee, go outside to get the morning paper, prepare a bit of breakfast? Yeah, today I did that.
Now, did I take my meds? Uh, huh. Can I get a shower and dress for the day, even if it is jeans and a t-shirt that has seen better days? Check.
Then I sit down at my computer.....Heh. My body has been cooperating so far today, but my mind has gone AWOL. What do I need to accomplish today? Or, better yet, what am I ABLE to accomplish today? Okay, I'll check my emails and see if I have an editing project. Nope. Try to write something in Facebook, then. Sigh. Nothing comes to my muddy mind. Yesterday, I wrote a lot. Today, nothing seems to surface from the sludge I call my brain.
I need to do some promotion work on at least one of my books. What is today? Tuesday? Okay, find the sheet that lists where you can promote on Tuesdays. Then do the form email for that day for that site. Whew. That took about an hour. Now I feel guilty that I should have been writing more on my novel-in-progress.
My mind then tells me to quit being so hard on myself. I'm having a Lupie day.
Oh, speaking of Lupies....I go back to my emails and there are a bunch of messages from my Lupie friends.
I read them and reply. Then I feel better. At least I feel like I have done something constructive today.
And the sad part of all this is: I may have to go through the whole thing again tomorrow. Yep. Lupus is definitely known as Come -And Go Weird-Itis. At least for me today.


Saturday, May 1, 2010

Learning Something New Every Day....

I learn more from my fellow Lupies than I ever could from my doctors. I read a post this morning from a fellow Lupie who said Lupus can also affect the autonomic system. That is, your breathing, heart rate, temperature, etc.

Huh. So that's why I sometimes have problems with my body temp. It's always waaaay below "normal" so if I have my temp taken by a doctor's assistant, and she declares I don't have a fever, I always ask: "What does it say?" She'll say, "98.6." And then I say, "Well, with me, that's a fever."

My regular PCP and her office staff are accustomed to me making remarks like that. Because they're true, and they know me very well after all these years. I don't go into her office just on a whim; it has to be something that I can't handle at home, on my own, with OTC meds.

Like the fever I had about a month ago. It turned out to be a UTI of biblical proportions, IMO. I couldn't get rid of it. Three rounds of Cipro later, I am sent to a urologist. He prescribes Macrobid for 30 days, and that does the trick.

There is nothing "normal" about a Lupie.

Just ask one.


Friday, April 9, 2010

Typos and Eyes....

I just noticed on my last post that I made a big boo-boo. "They Eyes Have It" Should have been THE Eyes Have It. So much for the double vision thing.
I have been back to the eye doctor, for a follow up of my last visit, when I had told him about the double vision.
Since the last visit, I had been online with my lupus support group that is soooo terrific, giving me information and insights into this disease so much better than any "learned physician" ever could. I'm not dissing my doctors, or any doctors, mind you, but they haven't actually lived with this beast that has no "normal" progression or symptoms.
And on the subject of my double vision, complaining that my PCP, my rheumy, and the eye doctor (I say "eye doctor" because I always have trouble spelling ophthalmologist)couldn't figure out why I was experiencing this, one of the members of the support group suggested maybe it had to do with Sjogren's Syndrome. HUH?
Of course, that's correct. I don't know if I had told my eye doctor about the Sjogren's or not, but yesterday, when he asked if I had had any more problems with the double vision, I very brightly said, "Oh, I think it might have something to do with my Sjogren's. I don't know if you have that listed on my chart or not, but it's pretty common for Sjogren's patients."
He kind of turned a bit pale, turned to my chart and then said, "Well, it just might be." No comment on whether it was in my chart or not; I'm sure he wanted to save face if he had, indeed, missed it.
So he checked my eyes, after they had been dilated, of course, and during the exam he stated my eyes "aren't too dry" and I resisted the impulse to tell him, "You're not looking at the world thru my eyes." He then asked me if I used my eye drops four times a day (they're OTC) and I said, "No, usually just twice." So he's telling me to use them 4 times a day now. Huh. But they're not that bad....LOL. Rest of the exam is positive. No diabetic retinopathy and the cataracts aren't ripe enough to talk about surgery yet.
Drove home, wearing those dumb dark glasses that really don't cut out the light coming in from the sides of the glasses, pulled the blinds shut, laid down and closed my eyes for about an hour. A total waste of time, since I couldn't watch t.v. read or get on the computer.
And I'm thinking, just like the preparation done before a colonoscopy, "There ought to be a better way to check your eyes," don'tcha agree?
Thus endeth my complaint for the day.


Friday, April 2, 2010

They Eyes Have It

I began having some double vision recently. Nothing to worry about, I told myself, since I spend a lot of time at the computer screen, staring and forgetting to blink. That will put anybody's eyes at risk for something even more worrisome than double vision.
Oh, it didn't last long, either. Another reason I tended to brush it off. A momentary, transient feeling that my eyes were not focusing properly, and that I was indeed seeing double of everything. I tested my blood sugar, since I'm diabetic, and I wasn't having a low blood sugar drop, something that can get me in real trouble, especially when I'm driving. (Remind me to tell you sometime about the time I was going home from the dentist at 4PM and ended up 50 miles from home at 6PM not knowing where I was and how I got there.)
Anyway, I mentioned it to my doctor during my most recent visit. She frowned and suggested I see my ophthalmologist. So I made an appt. No reason I should be having double vision, he said. Hmmm. Rheumatologist had also recommended I see the eye doctor. He wasn't too sure what was going on with that, but said my tests looked good.
So I'm reading the posts from my good buddies at a lupus support online site, and I mention my double vision. And sure enough, here comes the answer.....Sjogrens Disease can also cause double vision.
Makes sense. I have Sjogren's, too: dry mouth, dry eyes, so that could cause my eyes to act up in that manner. I went to the Sjogren's website, and sure enough, there it was.
Funny how it takes one lone, non-medical person to grasp the situation and respond with the correct answer, when the very same situation had stumped three learned medical professionals.
Sometimes I wish every doctor could experience one day in the life of a lupus patient. On a bad day. Then maybe they'd "get it." Nothing quite like experience, I say.


Tuesday, March 30, 2010

A New Insight....

I've lived with lupus since my diagnosis in 1988. That's a long time. So you'd think I'd be more aware of the limitations this disease imposes on me, but that's not true, unfortunately.
Every day, I have a new revelation about myself and this disease, as we co-exist. I think every day that I understand what it can do, what it has done, to my body, mind and spirit, and every day, I am proven wrong.
I woke up this morning thinking about my headache. Not uncommon, since I suffer from sinus headaches year round; nothing serious. Then my Magical Mind began its "What if" journey:
"I'm supposed to give a presentation on April 11th. What if I'm not well? What if I can't do it? When should I call and cancel, with regrets?" And on and on.
I struggled from my warm bed, made coffee and got the morning paper from the front yard. I really didn't give my thoughts a second thought, for a while.
And then, as the mind will do on occasion, a thought came to me: "You don't have to make that decision today." Hmmm. Okay.
Then, "And it may not be your decision to make."
Huh? I thought. Then I realized how true that is.
We go through our lives, making plans. Then something like a chronic illness comes in and robs us of our decision-making processes. Many decisions are made for us, by doctors. Don't like it? Well, tough. You have to do what it takes to get better.
And you do get better, for the most part. For some of us, "better" is a relative term, but at least we're mostly out of danger and out of the worst part of the pain.
It's the day-to-day living that trips me up. I can do many of the things I used to do, pre-lupus. Or most of the things, anyway. And some of the things I can no longer do, are due to the fact that I've aged some 20 mumble years since diagnosis. I'm no longer able to sit down on the floor and pop right back up. I can't run any more. Maybe if my life depended on it, but just to get out and jog-- heh. My joints still hurt when pressure is put on them. That's just age, my dears.
So, this morning I was faced with yet another factor lupus patients have to deal with:
Sometimes our decisions are not all ours to make.
Today, I'm okay. Today, I could go do the presentation.
Tomorrow? Well, who knows? I still have good days and bad days. I'm just not going to worry about a possible bad day in the future.

Thursday, March 25, 2010

The Never Ending Search....

Sometimes I feel like a grand damme, one who has survived the outrageous indignities this disease can inflict on us, only to rise from the ashes to laugh another day.

Other times, I feel ground down, discouraged and listless, wondering why I have to live this way, when all around me are healthy people going about their own lives without worrying about fevers, aches, pains, medical expenses associated with this disease, and a life revolving around doctor's appointments and last minute excursions to the ER.

I had one such event last week. Oh, I wasn't really in pain. I wasn't even really in an emergency state. But I called my doctor's office one day last week, asking her why my legs were "jumping" and twitching uncontrollably. They told me I could come in at 11:30. I was there in 15 minutes. My son drove me, since I didn't feel like my legs would cooperate between moving from the gas to the brake pedal, and I might confuse the two and have a wreck.

So we sat in the lobby; I figured if I were going to die, I'd die right there in her waiting room, rather than at home. Her nurse took pity on me and said I could go to the back room and lie down, which I did. All the time, my legs were dancing to unheard music. I wondered if I could be having a seizure, and asked the nurse as she took my blood pressure and temp. At that moment, the doctor appeared. She checked me over and then shook her head, sighing, "We're going to take you on down to the ER. I don't know what's going on with you."
My PCP and I have become good friends thru the years. I have learned to ask questions, offer suggestions, and even sometimes remind her of how sensitive I am to some medications. This latest encounter was no exception. I told her I had recently started neurontin, at my rheumy's suggestion.

So I'm in the ER, still shaking like a leaf in a storm. Nurses and doctors bustle; questions asked and answered, mostly along the line of "where do you hurt?" and "are you allergic to anything?" And my answers: "I'm not really hurting. I just want the shaking to stop." And "No codeine, no phergan." I'm hooked up to an IV, an EKG is run, and I'm declared not having a heart attack....which I didn't think I was experiencing, anyway. Next came a kidney and lower abdomen scan; nothing found that could be causing my distress.

Upshot was, I was dismissed with prescriptions for Vicodin (which I despise and throw up immediately, so I discounted that suggestion) an anti-nausea med (which I filled) and -- heh -- an anti-anxiety med.

So they couldn't find anything wrong with this lady, so they decide I'm hysterical; I've been hyperventilating, so they'll just settle me down with an anti-anxiety med. I not only didn't fill that prescription, I trashed it.

Then I remembered: The neurontin had been in my system for about two weeks. It was working overtime on my nerves in my legs. I wouldn't take it any more, and see what happens.

So it's a week later. No more shaking in the legs. The neurontin is apparently gone from my system. So what now?

Now, I go back to the regularly scheduled appt. with the urologist, whom I had seen for what appeared to be a bladder/UTI infection that wouldn't go away. It was gone. Bladder scope shows nothing going on. Kidneys show up good on the ER scan. So nothing there. But I'm running a bit of a fever.

Infection somewhere. I normally run about a 97.6 temp, so to me, a "normal" 98.6 is a fever. The doctor, bless him, suggested there is an infection somewhere, not in my urinary tract, but somewhere, so he prescribes a low dose Macrobid daily for 30 days.

I sigh and take the prescription. It's worth a try.

This is the life of a lupus patient. Mysterious infections. Low grade fevers. Non-emergency ER visits. And a persistent feeling of "things just don't feel right." At times, sure, there are real emergency room visits. Real fevers. Real pain and fatigue.

Mostly, though, it's a constant, vague feeling of fatigue, fleeting bouts of mysterious pains and aches, urinary problems, some back pains, yada yada, yada. So quit complaining, Marilyn, I tell myself. You've been in worse shape.

Yeah, and I don't want to go there again. And that's why I complain.


Sunday, March 14, 2010

New Book Coming Along Nicely....

Which is more than I can say for this blog. I have to confess, I had soooo many blogs, I couldn't keep up. I had one for each of my 4 novels, plus My Ashes of Dead Lovers Garage Sale anthology, and one for my book about Military Brats (sequel to be published soon) and of course, this blog about my struggles with SLE.

So, I deleted all my blogs except this one, the Brat one, and I created an all-encompassing blog, Marilyn's Musings for posts about writing in general and an occasional rant or two. Or a dozen. Hopefully, I'll be able to keep up a little better with these 3 blogs.....

Now, for a bit about my recent encounters with the wolf..... I can't seem to have just a little cold. Oh, no, I have to have bronchitis, or a sinus infection. And lately, since Christmas, I've had a persistent UTI. (This may be a bit TMI for some readers, but I figure everybody knows everything about me by now, so damn the torpedoes. They might as well know about my urinary habits.) Pain. Cold chills. Nagging back pain occasionally. Went to primary PCP. Sure enough. UTI. Prescribed Cipro. Usually it works. This time, nada. Went back. Tested again. It's baaaaack. Another round of Cipro, pain, chills. Nada. Called the third time. Third round of Cipro. I innocently asked the PA, "Maybe we should try something else?" But, noooo, doctor doesn't want to overtreat. Heh. Third round did no good. This time she suggests I see a urologist.

Wonderful. I'm picturing myself in a waiting room full of impotent men who will elbow past me in their haste to get the little blue pill. But, maybe not. By this time -- it's been 3 months of this c**p and now I'm having -- ahem -- some urinary incontinence. Like when I cough or sneeze. Very embarrassing in public -- or heck, even here at home.

So, I'm wondering if this is part of lupus or just old age?

Anybody? Maybe I'll find out tomorrow after I see the urologist. If I don't get run over by those men with ED, that is.....