My Blog Stop for Today 4/27/07

....is in Big Sky Country -- Montana. I am visiting with Barbara Williamson-Wood, about my book, Once a Brat, the story of my world-wide travels with my army officer father immediately after WWII.

Babs is a member of our online yahoo writers group, The Writer's Life, and she is a prolific contributor to our group and a published writer, herself.

After you read her post about my book at http://360.yahoo.com/lakotahwriter/
read the rest of her blogs and follow the links to her book, Inner Trappings.

And when I'm finished visiting with Babs, don't even try to drag me out of Montana!

My Blog Stop for Today 4/26/07

....is at Linda Rucker's blog, http://www.readingrucker.blogspot.com/
where she will be interviewing me about my book, Once a Brat. This is the story of my world-wide travels with my Army officer father from my birth in 1938 to his retirement in 1958. Makes me real old, doesn't it?

But despite the differences in our ages, Linda and I share an affinity for badly-written sci-fi movies, and when we get our heads above water, we want to write a Really Bad Sci-Fi Movie for the Ages, and make a bunch of money parodying those we've already seen.

And Linda can really get us started on a plot, as she has sent me several pages of works in progress, and this gal is GOOD. She has a book out, Dark Ridge, which you can see her links to buy it on her blog, after you've finished reading our chat.

I Have No Business Posting Today

I have a headache. It's supposed to storm with high winds, tornadoes and maybe some hail, and here I am, at the computer, tempting fate. One good lightning strike and my computer could be toast. Yet I press on.
Somebody might need to read my message of encouragement. I saw through my usual Google Alert this morning that others have posted on their blogs about lupus, and I wanted to let them know it's not an automatic death sentence, with proper care and medication, they can live an almost normal life, but I was frustrated no end when I had written a long comment and then encountered a snooty, "You must be a member of this site to post your comments."
Well, hell. How does a blog site expect to draw any kind of traffic with that ugly discrimination? So from now on, I suppose I'll have to check out the bottom line ( do I have to join in order to comment?) before I post.
You can post a comment, here. Anybody is welcome. I enjoy a dialogue, even when people don't agree with me on many subjects.
So now I need to unplug the computer. Lightning is getting too close. Cat has taken refuge under the bed. That's a good clue.....

My Blog Stop for Today 4/23/07

I'm at Jamieson Wolf's blog where he is interviewing me for my book, Once a Brat. But Jamieson has a book coming out very soon, himself, titled The Ghost Mirror, published by eTreasures.

Jamieson is a never ending source of information and encouragement to those of us on The Writer's Life yahoo group. I don't see how he does it all. But go check out my interview for his insightful questions: http://www.jamioesonwolf.blogspot.com/
and after you've read that, and his other postings, go on over to his blog for his book at: www.theghostmirror.blogspot.com/ for a taste of his new book.

Enjoy!
Marilyn

Lupus Support Group

I'm really in a quandry here, folks. I'm co-facilitator of our local (Fort Worth) support group, North Texas Chapter of the Lupus Foundation of America.

And I went to the meeting yesterday, and NOBODY showed up. Despite the fact that during last week, I got two rather frantic calls from relatives of persons who had found out a daughter or sister had just been diagnosed with lupus and they had a whole lot of fear in their voices.

So I explained what little I knew; that is, they have a right to be anxious, but lupus is not the death sentence it used to be, and once a diagnosis has been made, and treatment started, they will get better. I reminded them of the lupus support group meeting on Saturday and they swore on a stack of Bibles they would be there, so yesterday I dragged my sorry ass down to the hospital meeting room, where I waited. And waited. And waited. Meetings start at 11:00 AM and run until about 12:30. So at 11:45, I said, Screw it, and turned out the lights and shut the door.

This is getting to be a habit, folks. We had pretty good attendance for a number of years, but recently, only one or two people have shown up, and now None. We put a reminder on the community calendar in the local newspaper, an email goes out to those members to remind them, and yet.....

I have spoken to the Powers That Be in our Dallas Chapter, and their take is, "Don't worry about it." But I do. I've even thought of changing our meeting place to a cafeteria or some such public place, because parking is a problem at the hospital, and the meeting room is underground, with no windows, so it's kind of gloomy even with lots of fluorescent lights (which we're supposed to avoid, by the way.) I have toyed with the idea of having a speaker, but what would happen if I scheduled some busy doctor for that day and NOBODY showed up?

I realize this is not all my problem to solve, and I need to get some input from our membership. I'll check in with my cofacilitator, who has been sick as a dog recently, so I don't know how much she can help with this. And we need a FREE meeting space, where we can keep our literature under lock and key (due to the damn Privacy Laws, ya know-- how terrible it would be if Somebody Found Out You Attend a Lupus Support Group, for heaven's sake! And I also need to order updated brochures from our Dallas chapter.

Maybe it's time to give up this post to somebody younger, who has more energy to devote to this group than I do. Yesterday I turned 69, and I feel every day of that age right now. I've been battling this damn disease since way before I was diagnosed in 1988, and am currently in remission, thank you God, but I also have diabetes (insulin dependent) CHF and fibromyalgia. And just last week, I had such muscle spasms in my back for at least a week with no pain relief no matter what I did, that I went to my primary care doctor in tears, literally. She prescribed Valium, of all things, and it zonked me for 10 days. But it worked.

So now I'm back to paying attention to this community service, and need some more direction than what I'm getting. Keep in mind this is an all volunteer organization, except for our National headquarters. And I know sometimes some of our members are just too damn sick to attend. But newcomers? Those who begged for information and swore they would be there?

Maybe I reassured them too much. You think?

Anybody who has any ideas, please feel free to comment or email me at rmebrat38@sbcglobal.net and I will sure appreciate anything you have to say.

Today's Virtual Blog stop 4/19/07

I'll be visiting today with Sandy Lender, a phenomenal writer of fantasy, which I could never in a million years, produce anything halfway decent. She will be interviewing me about my book, Once a Brat, and when you've finished reading that blog posting, go read her other postings and be royally entertained.

Sandy is a member of our yahoo writers group, The Writers Life, list mom is Dorothy Thompson. Dorothy has recently set up shop as a publicist, so if you are a struggling writer looking for ways to promote your works, she's the gal for you. Go see her blog at http://www.pumpupyouronlinebookpromotion.blogspot.com/
and sign up with her.
This is not a paid endorsement.

Today's Virtual Blog stop 4/18/07

Okay, no lupus postings today, as I am busy being interviewed on Mike Witherspoon's blog site: http://interviewingauthors.blogspot.com/

He will be quizzing me about my book, Once a Brat, which describes my life as an Army Brat traveling all over the world with my Army officer father right after WWII.

So, go to the blog and read not only his interview with me, but the other postings as well.

My Blog Stop for Today is in Germany!

Woo-hoo! I told you so, that someday my writing would encompass the world, and here I am today in Germany, being interviewed by a fellow Army Brat. We are having coffee and strudel, and sometimes lapsing into German-speak, although she, of course, is much better at it than I am, since it's been 50 years since Frau Platzer drilled us in German grammar.

So if you want to eavesdrop on a couple of Army Brats go to: http://martinamr.blogspot.com/index.html

And when you get ready to leave, please don't try to take me with you. I love the States, but I want to visit a little longer - maybe 10 years?

Guten Tag! (Good Day!)

Virtual Blog Tour Stop for Today 4/16/07

Today, I'm at Dorothy Thompson's publicist blog: http://www.pumpupyouronlinebookpromotion.blogspot.com/
where she interviews me about online book promotion. Like many writers, I'd rather write than get out and beat the bushes trying to advertise my works. It was a hit or miss proposition, to say the least, until I saw that Dorothy, list mom for our yahoo writers group, The Writer's Life, decided to go into the business of promoting books online.

Since that time ( a couple of weeks, actually) she has spiffied up my blogs, my website and arranged a virtual blog tour for my book, Once a Brat. My Google hits have already doubled, and I am being interviewed by other writers who have noticed the "buzz" about my book.

Believe me, this is soooo much easier than dressing up, going to a television studio where the lighting makes you look twenty years older than you are, or doing a booksigning where there is very little profit made, or going to book fairs which also feature guns and knives and the customers' eyes glaze over when they see you are selling books. They're hunters, and they're hunting for guns and ammo.

With Internet publicity handled by Dorothy (my publicist-- how I love saying that!) I can sit in my pajamas at home and reach out to the whole world about my book(s).

As soon as we finish promoting Once a Brat, Dorothy already has plans in place to promote my next novel, The Women of Camp Sobingo, which will be released by Mardi Gras Publications on June 9, 2007. I can hardly wait to see what we'll be doing with this book's promotion!

This is not a paid endorsement, btw. I'm just happy to recommend her to all you writers out there who would love the concentrate more on writing, and leave the publicizing in the hands of a competent publicist: Dorothy Thompson.

Enjoy!

My Aching Back!

I'm floating around today on Valium. Not for any of my lupus symptoms, but because I've had the grandmother of all muscle spasms in my lower back. Don't know what caused it, except maybe two weeks ago, as I was driving in a funeral procession, headlights on, in line with many other cars, some idiot failed to see that we were a funeral procession, and since she had the green light, she shot on out of the intersection. I missed her by mere inches.
That must have been what set me up for the muscle spasms that started about a week later. I finally went to the doctor and told her "Childbirth didn't hurt any worse than this." She asked me to lay down on the exam table and turn toward her. I bawled and squalled, and she handed me a prescription for -- of all things -- Valium.
It will make you sleepy, she said. And she was so right. I do sleep better now, and I can get up and do things in the morning without feeling too dopey, but in the late afternoon, I'm not worth shooting. Wanna sleep, I whine. So I do. My cat doesn't care. In fact, she sleeps with me. Or on me. On the couch with the tv on, something I really wanted to watch, and an hour later I realize I've missed it.
Oh, well. The thing I'm grateful for is that it's not lupus related. You know, after living with this disease for a number of years, you kind of wonder about every little thing being caused by lupus. But you can get a cold, or a stomach ache, or even develop muscle spasms without it being connected to lupus. Or anything else for that matter.
So that's my story for the day. Two more days to go on the Valium and then maybe I'll be coherent. Coherent or not, I'd also like to be rid of the back spasms.

Virtual Blog Tour Stop for Today 4/12/07

Today I will be visiting with Kathy Holmes, author of a recently released book, Real Women Wear Red. She has graciously offered to interview me about my book, Once a Brat, which details my life as an army brat from 1938 to 1958 and how it affected my life.

Kathy's blog will be a joy to read, as it is professionally done and easy to read, so hop on over to http://www.kathyholmes.net/ and enjoy. Leave a comment or two, if you wish. We live for comments!

Today's Virtual Blog stop 4/6/07

Today, I will be visiting Karen McGill, another Canadian in our Writers Life yahoo group. She is at http://www. pdawgsbabe.bravejournal.com/
She will be interviewing me regarding my book, Once a Brat, with some great questions I hadn't been asked before.

So go read her pithy comments; she goes straight to the point and her posts are always informative as well as entertaining.

Thanks, Karen.

Another Post for Today....Vertigo!

I know, two posts in one day! But I just had to blog about this -- this "thing" that is invading my body.

I woke this morning with vertigo -- fortunately, I sat on the edge of the bed before getting up, so the room wouldn't spin and throw me to the ground. Last November, I got up in the middle of the night to go to the bathroom and went "splat" right against the wall on the side of my bed....not my intentional route.

I then bounced back to where I grabbed the footboard of my brass bed frame and felt the room spinning around. Geeze, I have to make it to the bathroom, I thought, so I lurched toward the bathroom door -- and collided with a chair, which, unfortunately, was a swivel chair, and it threw me away from the door and onto the floor. All the pictures, various and sundry articles of makeup, clattered to the floor with me. I then crawled to the bathroom and did nature's bidding, at last.
But this alarmed me so much that I next called my brother to please come and check me out to see if I needed to go to the ER. Maybe I'm having a stroke, I added. He came, checked me out as best as he could determine and we agreed that, with my medical history, I probably should go to the ER. He wanted to take me, but I said I would get better care from the paramedics here at home before they carted me away.
So the 911 call was made and soon the paramedics were there, checking my meds, checking me over, and then it was decided to be safe rather than sorry, so they transported me to the ER.

Funny thing....I get car sick easily, and here I am riding in an ambulance, backwards, with vertigo to boot. I avoided throwing up, as I certainly had embarrassed myself enough already by even calling the medics.

And sure enough, once I arrived at the ER at my favorite hospital (I joke that I'm a frequent flyer) the doctor checked me over, looked in my ears and pronounced inner ear fluid.

Boy, did I feel like a dummy. But better to be safe than sorry. I was prescribed medication and my brother took me home.

Everything was fine after that, until this morning. It's BAAAACK.

I have entirely too much on my plate today to have this inconvenience. So I staggered into the kitchen, took my meds and waited for the spinning sensation to leave. Then I went outside to get the morning paper, and hooray! I could bend over and not FALL over!

As I write this, I'm experiencing a bit of vertigo, but ignoring it. We who have lupus are pretty adept at learning to live with these inconveniences. I know the signs of a flare, now, so I am able to beat it down before it gets too bad.
I'm just irritated that now I have this extra "infirmity" laid upon me, and one of the problems I have with this is, what is "normal" for a person my age? Even without lupus?

Is it normal to experience vertigo when you have an allergy ? Dunno. I guess it's normal for me. Some of my friends have had it, too, so they can only give me their experiences with it.

It's bad enough to experience lupus, but when it collides with "normal" old age, I get a little testy. Let it be one or the other, I think, but not both at the same time, please.

Man plans, God laughs.

It could be a lot worse. I'm fortunate to even achieve "old age" status with this damn disease, in the first place. So I shrug it off.

Besides, I have plans for this evening. A friend of mine is here from out of town with her new fiance, and I sure want to meet them for dinner.

And if I have another vertigo attack, at least I'll have people around who can pick me up off the floor......

Virtual Blog Tour Stop for Today

Today, I will be interviewed on Sigrid McDonald's blog:

http://visitdamourroad.blogspot.com/

about my book, Once a Brat.

Sigrid lives and blogs in Canada, so I am calling myself "internationally famous" --

Read, enjoy and leave comments, please!

Today's Virtual Blog stop

Today I am visiting with Marc Curtis on his blog, http://www.militarybrat.com/bratblog.cfm. about our mutual heritage and my book about being an army brat from my birth in 1938 to my father's retirement in 1958.

Yes, I'm old. But that's something unique to myself.....that at the tender age of 8, I received my very own orders from The War Department to join my father in Seoul, Korea, right after WWII. Therein began my years as a global nomad. Something I wouldn't trade for anything.....at least, not now. At the time, I'm sure I felt some sense of alienation when I arrived at a new school, but I didn't know any other way to live. It was only after I was "retired" that I realized other people lived in the same town, in the same house, had relatives around them all their lives....and I hadn't.

But to read more about this lifestyle, go to Marc's blog and read all about it. I am so grateful to Marc for establishing a registry for military brats to find each other -- to reconnect with lost classmates from all over the world.

So, brats, go register! You might not be looking for anybody specifically,but somebody may be looking for you!

Virtual Blog Tour Second Stop and lupus news

I was featured last night on Phil Harris' radio program, All Things that Matter, about my book, Diagnosis: Lupus: The Intimate Journal of a Lupus Patient, which is now archived for your listening enjoyment at: http://www.internetvoicesradio.com

Please leave a comment on my blog or send me an email at rmebrat38@sbcglobal.net -- constructive criticism is encouraged.

With regard to the Virtual Blog Tour Second Stop:

I will be featured today at Nikki Leigh's blog: http://www.inspiredauthor.com/blog_v2/blogs/index.php/home
regarding my book, Once a Brat.

Nikki is a member of the yahoo writers group, thewriterslife, run by Dorothy Thompson.

Enjoy!

Virtual Blog Tour First Stop

I'm pleased to announce that today I will be visiting with Dorothy Thompson on her blog, The Writer's Life for my book, Once a Brat. As one of the first military dependents to be deployed overseas after WWII, I recount my life as an army brat from my birth in 1938 to my father's retirement in 1958.

Stop by her blog at http://www.thewriterslife.blogspot.com/

If you are a writer and need help in promoting your works, Dorothy is the person to go to for your publicity needs.

Feeling Helpless

I got a phone call this morning from a gentleman whose wife is currently hospitalized with God-knows-what and he said in addition to what they thought she has (blood disorder, head injury) that now she has lupus. I felt his pain right through the telephone. To watch somebody suffer and not know what to do is one of the most excruciating experiences a person can endure. My family knows this.

Because 2 years ago, I was in the hospital, comatose from God-knows- what and I also have lupus. For weeks, various doctors stood around my bed in ICU, scraching their heads, adjusting medications that at times sent my lab work zinging into the stratosphere and at other times doing no good whatsoever.

I originally went to the hospital via ambulance because I had trouble catching my breath even as I tried to walk across the living room. I felt like a ninny as I reached for the phone to dial 911, but thought, I'd rather it be a false alarm than to die right here, not having helped myself. I was given oxygen en route, and when we reached the ER, I was able to answer their questions, but when I stood up to transfer from the wheelchair to a gurney, my legs buckled beneath me and I fell to the floor, hitting my forehead. I remember yelling, "Goddammit! Sonofabitch!" and then I remembered nothing else. Blackness prevailed. I was, as they say, "unresponsive."

At some point, I cracked open my eyes and noticed I was in a room by myself. I knew I was in the hospital, and I remembered I had fallen and hit my head. "Oh, " I thought to myself with shame, "I'm being punished for cussing."

My family was called. Daughter from her home near me, son from Oregon, other daughter from CA. Meanwhile, the priest was called and I was given Last Rites. (I'm Episcopalian). All this took place over several days, and my family gathered at my house and spelled each other at the hospital. My mother arrived from South Texas. I was unaware of anything; didn't know the passage of time; didn't hear anybody; didn't dream -- in short, nothing penetrated, even the doctors as they poked and prodded, adjusted medications and talked about the color of my urine.

As my daughters spelled each other, one would pass a notebook to the other, and one of the notations was, "Don't pay any attention to anything Mom says. She's out of her head." One time, I mumbled something about "The Korean guards are after me." Was I ever in a Korean prison? they asked me later.
(At the age of 8, I went to Korea to join my father in the US Occupation after WII, in 1946. )

"No, but I remember a Korean military guard in the compound scaring the bejeesus out of me as I was walking to school one morning. He called out to me, "You Christian?" And I said, "Yes." Knowing full well I shouldn't be talking to strangers, let alone and armed guard in a strange country. But I did, and then he spat on the ground, yelling, "Pah! Christians!" and somehow that scared me and I ran all the way to the safety of the school.

So that explained that little history lesson. Later, as I was moved from intensive care into sub-acute care, they wanted me to eat, yet I had no appetite. One of the kids asked, "What kind of food do you want, Mom?" since I was not eating the hospital food. (Sounds like a rational act to me!) And out of my mouth flew the word: "Cowboy. Cowboy food."

Well, old Mom was for sure out of her head now. I puzzled over that, myself, until my mother arrived and my kids told her. "Oh, that's what she called American food when we lived in Korea. Give her a hamburger." Woo-hoo! Cowboy food!

At some point I went home, but I didn't stay long. I was hallucinating, they said. Believing that my friend Joyce, who dropped by to visit, had put something in her pocket, and when I asked her what she had put in her pocket, she showed me she had no pockets whatsoever in her dress. And the topper was, my cat was talking to me. Talking not cat talk, but English.

Unfortunately, I received no Secrets from the Universe in that conversation, but my family hauled me back to the hospital. Things got really fuzzy, because they said I went into another blackout, priests were called again, and doctors warned my family that they might consider a nursing home at best, or funeral arrangements at worst.

Again, I pulled out of whatever it was. And this time, my family insisted on my going to a rheabilitation hosptial until I got all better. And I was well enough to hate the enforced bed rest, coupled with strength-building exercises, and I ate the damned hospital food, longing for a good "Cowboy" meal. I was well enough to yell at the nurse who put an alarm in my bed, to keep me from getting up and going to the bathroom by myself. I snapped that I would call the administrator if she didn't get that out of my bed "right now." And she did. Heh. In the military, they say if the troops are griping, morale is good. I was really full of morale by then.

At last, I came home. This time for good. I had a visiting nurse for a while, and Meals on Wheels for a couple of weeks, until I decided I could get my own meals, thank you.

And they didn't serve Cowboy food.

All this was brought back to my mind this morning when the distressed gentleman called. Bless his heart, he felt helpless, and I told him my family did, too, when I was in the hospital. However, if the other illnesses/conditions didn't kill her now, she would get better when the lupus gets treated.

And that's the bottom line with lupus, I think. It's worse before it's finally diagnosed and treated. I was diagnosed in October of 1988, and by February, I was in the hospital with lung involvement.

It's been a long haul upward since that time, and just when I thought things were okay, this other thing hit me -- but was it a lupus flare? My doctors "don't think so." Will this ever happen again? "Probably not," my rheumatologist, cardiologist, neurologist, nephrologist and primary care physican agree. "Well, what can I do to prevent this from ever happening again?" Shrugged shoulders; even my doctors felt helpless.

So I told my family: "If I ever go bact to the hospital with whatever this thing is, I want you to know it's not because of something I did or didn't do. Something that I ate or drank, or didn't eat or drink, or whatever. Okay?"

And that's the way it's been since June - September of 2004. I don't want to ever go back there again. But who knows? I could cross the street and get hit by a a beer truck tomorrow. I can't live my life on "what if?"

That's essentially it, folks. Do the best you can with the knowledge you have now, and trust that you will get better.

####

My Book is Recommended by the Lupus Foundation of America

Wow! I waddled out to the mailbox yesterday and pulled out my copy of Lupus Now, Spring Edition, and was leafing idly through it when what to my wondering eyes should appear but an ad about my book!
The text is as follows:

Diagnosis: Lupus- The Intimate Journal of a Lupus Patient (PublishAmerica Press, Baltimore 2005; paperback, 216 pp. $19.95) by Marilyn Celeste Morris. When the author was suddenly confronted with symptoms of joint pain and extreme fatigue, she undertook an intensive search to understand what eventually would be diagnosed as systemic lupus erythematosus. Throughout the pages of her intimate daily journal, she takes the reader on a journey from chronic joint pain, frustration, anger and grief for her former self, to her current state of remission. Far from being a list of complaints, the author's pages reveal her unexpected spiritual growth and gratitude for life itself. In addition to this book, the author has written fiction and a memoir.

I had sent 3 copies of my book to the LFA Publications Editor for review about three months ago and had almost forgotten, and yet there it was! Let me tell you folks who aren't writers trying to get your work(s) out to the public -- this little ad is worth its weight in gold! Not only in sales, but in awareness of the disease, if someone should happen upon it, hoping it might help explain their friend/wife/husband's disease because I do let it all hang out. All the griping, despair, depression, swearing -- yes, this little granny lady knows a lot of swear words -- and that was one reason I thought maybe the LFA wouldn't want to endorse it.

But I also shouldn't overlook the positive aspects of baring my soul with this book. It was risky, yes, to confess I went through this disease process kicking and screaming, blaming everybody including God for my distress, and for a woman like me who was raised by an authoritarian father to "not air dirty linen in public" it was a major step.

Oh, but I lost the train of thought, there for a minute. I was going to tell you about the positive aspect of writing this book and reliving every single minute of my progress. I did find an inner strength I didn't think I had.

Don't groan, here, this isn't going to be one of those mushy messages so many people love to pass around on the Internet, like the one I really, really hate, which concludes with the words kind of like, "If you love God, you will forward this to everybody you know." Now, I consider that Emotional Blackmail, and just to be perverse and tempt God's wrath, I hit the delete button. And I'm still here.....

Anyway, I did find a new appreciation for life itself and how little time we all have on this earth. Discovered there is no room for self-pity (well, maybe every once in a while, just for a few minutes -- after all, I'm not a saint) or resentment. I'm saying this from the perspective of having come through the roughest part of this disease, and in remission, but in re-reading my journal entries I can see that a tiny bit of acceptance beginning to take root, and I'm hoping readers of my book will be able to do that, too.

Someone who had just read about my lupus book emailed me to wish me well, and put a new spin on the old adage, "When life hands you lemons...." etc. His take on this saying says it even more succinctly than "make lemonade."

Okay, my new saying about what I've learned from this disease:

When life hands you lemons, ask for tequila. (Ole')

Is lupus inherited?

I read the newspaper first thing in the morning while savoring my first cup of coffee. I usually skim over some of the articles/columns, but this morning, one caught my attention as it contained the word "lupus."

A woman had written to the doctor's advice column that her son was about to marry a woman who has lupus. She was afraid her future grandchildren might inherit the disease, and she closed her remarks with "she has very pale, white skin."

Of course, the doctor addressed her concerns about whether or not her disease could be passed on to her children. Maybe, maybe not. But that should not prevent her from bearing children, as the survival rate for lupus presently is very high.

Then he addressed her concern about the girl's pale white skin. "Her skin color is not an indication of lupus."

Well, he was correct, but he needed to add something to the effect that "her pale white skin coloring is a reflection of her avoiding the sunlight, which can trigger a lupus flare. "

This is why we must be careful in reading material such as this and taking it as "gospel." While the article may be accurate and informative, newspaper space constraints probably prevented the doctor from providing a more complete answer to the woman's question. We forget that sometimes we get just enough information to scare us, or the answers cause us to ask even more questions.

For more complete and up to date information, nothing beats the official website, www.lupus.org. Rely on it, and if you have questions, be sure to ask.

More Anna Nicole

I thought they would release the autopsy reports on Anna Nicole Smith today, but either I missed the big announcement, or they didn't have them released today, after all.
I did see one brief sound bite from some guy in a doctor's white coat announce solemnly, "A person does not die suddenly from lupus." And that was it. Nothing followed up, no more explanation.
And he is correct. My point in an earlier post was that if the woman was running a 105 degree fever, why wasn't she in the hospital? Why did those around her seemingly ignore her soaring fever and let her die? She didn't die suddenly from lupus, of course. There were bound to be earlier signs of some lupus activity, such as lung involvement (coughing, aching in the pleura, etc.) or kidney involvement (retaining fluid) or just plain aching in the joints, all the time, despite taking aspirin or other OTC products.
Maybe she had taken so much of the drugs her own judgment was cloudy and she couldn't recognize the signs of a serious problem developing over a few days or hours.
But her retinue surely could have seen the signs that she was seriously ill, despite her protests. I didn't want to go to the hospital a couple of years ago, but my son saw the handwriting on the wall, and by the time I reluctantly wobbled into the ER, I was more than ready to have somebody save my life. A rational decision, don't you think? And my son certainly saw the signs of trouble and bullied me into climbing into the car for yet another trip to the ER. And you know what? That was his job. To help his mother. If I had been married, I would have expected my husband to do the same thing. Evidently, those around Anna Nicole Smith didn't give a darn about her. It would have been too inconvenient to have their meal ticket out of commission, pardon my saying so.
But I have looked at this situation with a jaundiced eye ever since she died. And please, somebody, tell us what happened to cause her death. "A Broken Heart" sounds so.....dramatic, and she was mourning the loss of her son -- "beloved son' is the phrase I kept hearing every time his name was mentioned -- and lupus and stress are not compatible. A lupus patient should try to have as little stress as possible, and along with her son's unexpected death, she had just given birth to her baby daughter, which in itself is a stressful event. A double-whammy; a birth and a death in close succession.
But again, we should keep in mind that lupus does not cause sudden death. There were signs.
But nobody was willing to see them.

Doctor's Visits and Expenses

When you have a chronic illness such as lupus, you make a lot of trips to the doctor's office. You have lots of blood work done, and you take lots of medications. At my quarterly visit today, my rheumatologist peered over his glasses as he flipped through my chart and pronounced, "Everything looks good."

The best words any patient would want to hear. Then followed the usual, "Keep doing what you're doing, stay out of the sun, and remember to take your meds." Then the inevitable pay-out at the nurse's station which adds a bit of crunch to the budget, but at least it's just an insurance co-pay and not the full amount.

For those who are unfortunate enough to not have any kind of health insurance, the road is rough. Not may persons can fork over $80.00 or more for a simple office visit, and the medications are costly, too.
So what does a person in that situation do?

I was asked that very question one day last week when a person called me as the facilitator for the local lupus support group; she was new in town and wanted the name of a doctor. Well, I had to tell her that if she had no health insurance, she might have to go to the County Hospital System. Words nobody wants to hear, but it's necessary.

I was a patient of the local County Health System for quite some time, when I was out of work and had no health insurance, and bless their hearts, they do a great job in seeing to the needs of packed waiting rooms every day, dispensing life-saving prescription medications at a fee even the poorest can afford. And if they can't afford the lowest payment, there are arrangements that can be made there, too.

Sure, you have to stand in line to register, to see the doctor, to pick up your medications. You soon learn the best time of day to go get your meds (definitely not Friday afternoon!) and when the doctors are less pressed for time (any day but Monday). Pretty soon you adjust to the routine and learn to settle in for a couple of hours, even when your appointment time was 8:00 AM and you broke your neck driving through rush hour traffic only to discover that you might actually get in to see the doctor around 3 PM.

The Emergency Room is even worse. An exercise in patience. I wouldn't advise anyone to use the county ER as their primary care physician for routine matters like checking blood pressure, which can wait until you have a regular appointment at the hospital/clinic. However, one day I had to go to the ER for a seemingly routine matter: I had pink eye.

And let me tell you, pink eye is painful and looks awful. I had rubbed my eye so hard by the time I got there that the triage nurse took one look at me and almost wrote "physical altercation" before I could blurt out the words, "I think I have pink eye." But they are trained observers, and it surely looked like I had gotten on the wrong end of a fight. I was finally called into the treatment room and emerged later, much later, with eye drops and a prescription for same.

Quite frankly, my own primary care physician's office is almost as crowded, and if you don't have an appointment, the "work in" situation is chancey at best.

So I shared all that with the woman who called and added that some of our best rheumatologists volunteer a day or two a month at the county hospital, so she would be getting good treatment for practically nothing.

Still, there is that stigma of having to go "on charity." Let me tell you....You can't pay the rent with your pride. You can't eat it, or drive it. Pride is the very last concern when you're faced with a choice, literally, between life and death. Ignoring your lupus symptoms and/or eliminating those life-sustaining meds will get you to the end of your life much quicker than if you swallowed your pride and accepted "charity." Remember, your goal is to live, and live well, even if you have lupus. It can be done.

Anna Nicole Had Lupus????

I just have to say it. Lord help me. I've been following this Anna Nicole Smith and her death soap opera, about half-way paying attention to the television "new" programs that blared into my kitchen tonight.

Same old same old, I thought absently, until my ears heard the word "lupus."

Anna Nicole had lupus, one of her intimate circle declared, and she didn't want it ever to be known.

The young announcer said earnestly that "lupus is an incurable disease of the immune system" and then the scene switched to some white-coated doctor who intoned that "yes, if she had lupus, it is extremely painful, and she might have been on some high-powered drugs to control the pain."

Well, uh, pardon me for asking, but who was treating her? Why wasn't her doctor contacted when she began her 105 degree fever? It was my experience with lupus that when I finally went to the doctor for a "little fever and pain in the back" he immediately put me in the hospital before my fever spiked to 105 degrees as I was checking myself into the hospital. Just in time, I thought, as I crawled into the waiting bed. Then the nurses began IV lines of antibiotics and Lord knows what else, and a couple of days later, I was ready to be dismissed.

Now, if this blonde beauty was in denial about having lupus, she did herself in by ignoring the symptoms of high fever. And where were her so called friends and lovers? Geeze, Louise, if I saw a friend with a fever that high, I darn sure would haul her ass off to a hospital, pdq, whether she wanted to go or not. To not have done so was criminally negligent, in my humble opinion.

Why haven't I heard any more about this? If this is true, where is the outrage that she died needlessly, untreated or mistreated, or those around her ignoring her symptoms until it was too late?

If she did have lupus, why wasn't she being treated with steroids or anti-malarials, as most people with this disease are taking on a daily basis? Maybe she was taking steroids several years ago, which might explain her weight gain. Believe me, when I was taking prednisone, I was ravenous and gained a lot of weight. Weight which is almost impossible to lose, but being the "star" that she was, she had to lose it in a hurry. Did she quit taking the steroids, then? And substituted the methadone to control the pain? All for the sake of "looking beautiful?"

Maybe this was not true. I guess we'll never know for sure, if her instructions were to tell no one about it. As if having an autoimmune disease was something beautiful people couldn't possibly have. Let's just look the other way, then, and continue to treat the pain with illegal drugs, and ignore any warning signs that meant the disease was in full flare, calling for immediate medical attention.

I am jolted by the news today of one of our lupus support group members, whose funeral is set for tomorrow, as is Anna Nicole's. This ordinary woman was in the hospital for months, being treated as best as anyone can with this disease, and she still passed away. But in her case, she recognized the fact that she was very sick and needed medical help.

In Anna Nicole's case, evidently nobody wanted to admit the truth and call for help before the fever reached its high of 105.

And that's a shame. Who is going to tell her baby when she's older that her mother died needlessly? Or will they continue to keep the deep, dark secret and denial?

I guess I just don't understand. But then, to quote a line from The Great Gatsby, "The rich are different from you and me." I'll continue to be poor and still walking around, then, if that's a choice.

It will be interesting to follow this drama. Sad, but interesting.

First Post on Lupus

I was diagnosed with lupus in 1988. After years of searching for an answer to my unexplained joint pain and fatigue, one doctor finally made the diagnosis. It has been a long, tedious path from diagnosis to current remission, and I am grateful for that today.
Lupus also brought with it diabetes and fibromyalgia, but, as with managing the lupus symptoms, these are treatable.
One of the thoughts for this day on this blog reflects the title of the blog: Is it Life, or is it Lupus?
I get a cough, and wonder almost reflexively, is this another lupus attack? My joints ache before a rainstorm, and I wonder, is this a sign of recurring lupus? A headache? Hmmm. Wonder if it's central nervous system lupus?
Then I have to laugh at myself. I'm a person who has lupus, but I can also get a garden-variety chest cold; my joints might ache just because of my advancing age; and a headache may be caused by too much time spent at the computer.
So most of the time, it's just plain Life that just keeps happening. Just like anybody else.
Now a word to the person out there who has been from doctor to doctor, piling symptom upon symptom with no diagnosis, keep going. I have found through my personal experience, that lupus is at its very worst in the beginning, before diagnosis and treatment. It will get better.

If you or somebody you know has lupus, you might be interested in my book, Diagnosis: Lupus: The Intimate Journal of a Lupus Patient which describes my search for a diagnosis and treatment of this baffling disease. Available on Amazon.com
Diagnosis: Lupus : The Intimate Journal of a Lupus Patient by Marilyn Celeste Morris (Paperback - Oct 10, 2005)