Wednesday, December 30, 2009

Fun With Lupus?

Yep. We Lupies have to laugh or we'd be crying all the time. From brain fogs to falling like a drunk; from asserting ourselves with health care professionals and then sharing with others; from meds changing our moods and our weight.....we share our stories online and in lupus support groups world-wide.
While gathering material from others for publication in a new book, I have been touched to the point of tears at someone sharing her pain, frustration and feeling of "going crazy" and then a post arrives that sends me into much-needed belly-laughing.
One of the messages I read was from a fellow Lupie who was bemoaning the brain fog issue. For those who don't know what this is, (also called Lupus Lapse, or Brain Fart, or as somebody said her kids referred to it as The Thingy-Thing or What's Its Name, we find that we often blurt out words that have nothing to do with the object we are reaching for in our befuddled minds. I have been known to call a refrigerator a lampshade (causing my family to say HUH?) and refer to one of my grandchildren as "youngest kid" because the sweetie's name somehow eludes me. Sigh.
But the one I found the most hilarious was presented by another fellow on-line Lupie who said she was sitting with one of her children outside, admiring the flowers and butterflies. She intended to say, "pretty butterflies" and out of her mouth came the words: "Flying mushrooms."
I think I may have found a title for my new book: Life with Lupus and Flying Mushrooms.


Monday, December 7, 2009

Christmas Tree Up....Finally

I'm taking my own good advice about the holidays. I was in CA with my daughter and her family for Thanksgiving and came back with maybe a little flare.....certainly something to be expected. So far, so good; it's just a tired feeling and a little rash here and there. Itchy rash, raised and red. Not the shingles, thank goodness; I've had those several times and don't care to ever have them again. This rash isn't painful, just irritating.

So, being the traditionalist that I am, I got the tree out of storage and sorted through the boxes (yes, plural, boxes) of decorations. Overwhelmed by just putting the crystal and red cranberry garlands on the tree, I decided this year I would only have white decorations and angels. All unbreakable.

Except for the personalized "mouse in a stocking" ornaments given to me about 30 years ago by a sorority sister. A secret sister, so secret I don't even remember her name. But each year, the tradition has been for each child to hang his/her own mouse on the tree, and woe to anyone who dares hang his sister/brother's ornament. I've also designated certain ornaments as my grandchildren's personal ornaments, and they will hang them when they come over -- probably Christmas Eve.

We drew names this year for the adults; all the kids under 16 will get some little something -- I'm putting small items in their stockings -- saves wrapping, ya know. They always enjoy the bubbles, and each year I put chocolate covered cherries in one daughter's stocking. If I ever didn't do that, I think she might be really hurt.

So my point is, finally.....take it easy on yourself, too. Don't expend your energy where it's not absolutely required. My eldest niece, love her, is having the whole family for Christmas dinner. Of course, that's always been MY tradition, but we have to let go, finally, and allow the newer generation to have those honors.

It's a mixed blessing. Like so much in life.

If I don't post between now and Christmas, please know I wish everybody better health -- good health, even though that's asking old Santa a lot. If anybody can pull it off, he can!



Monday, November 16, 2009

New Traditions

I was on a lupus support group site yesterday, and a couple of the participants were fretting about the holidays. Fretting about the holidays for a lupus person, can certainly be detrimental to whatever health we have. Stress is any kind of change, and it's not all bad; this is a good stress, thinking about the joyous holiday season and all its attendant preparations.

Just as I have emphasized that once you get lupus, you have to give up your ideas of what's normal. Just because you did everything all in one day -- like I did laundry, grocery shopping and house cleaning all in one day, in the pre-lupus days -- doesn't mean you have to attain those goals now. Now, my motto while looking at a list of To Dos, is "Choose One."

But the holidays are different, I hear you protesting. I have to do X, Y and Z, because I've always done it. Nobody else knows how. And besides I want to do it.

Okay, go ahead, if you want to spend part of the holidays in ICU. Or flat on your back, while everybody else munches on the feast you lovingly prepared.

What I've learned to do -- and this came gradually, understand -- is change your normal holiday routine.

Gift shopping. We now draw names. No more searching for that perfect gift for a nephew whose tastes change from day to day. We do this name drawing at Thanksgiving, and set the monetary limit at under $20.00. This year, due to the economy, we'll probably set it at $10.00. You'd be surprised at what you can find for under $10.00. Merchants are falling all over themselves almost giving away their top selling items. And don't forget the convenience of on-line shopping.

For years, I had the entire family at my house for Thanksgiving and Christmas. I have a fairly large house, but it shrinks a bit more as each guest arrives. Everybody brings something, of course, and my brother bakes the turkey and brings it to my house. Gradually, we did away with using the good china and silver and good linen napkins, substituting paper or plastic products. There are some very nice paper plates out there, with beautiful holiday designs. Sure saves cleanup and not much dishwashing. I also save the plastic carryout boxes for several of the family members to take home with them for "seconds." After names are drawn and pies loaded onto dessert plates, we settle down to watch A Christmas Story, aka, "You'll shoot your eye out." The little boy wants a bb gun, and there are obstacles along the way. We've seen it so many times, we say the lines along with the characters, and roar with laughter every time.

Saves money that would have been spent going to a pricey movie.

At Christmas, the tradition is the same as Thanksgiving....same menu, same place. I gradually left off some decorations, figuring the tree and a few candles would be enough. This year, since my niece will have Christmas at her house (bless her heart!) and my kids in CA won't be coming, I'm probably not even put up the tree, which has always been an energy-burner.

Am I being a Scrooge? Not at all. I will celebrate the holidays with my family as usual, but I won't have to do all the work. I'll be gone for Thanksgiving so my niece is having that meal, too, and when she found out I'll not be there, she yelped: "Who's going to do the cornbread dressing?" Not to worry. I emailed her my mother's Secret Cornbread Dressing Recipe.

So there goes another part of the holidays that I don't have to be in charge of. Funny thing, the family will survive the change in traditions. I didn't think I could do it, but now I find that's a really nice feeling, something like "passing the torch" to the next generation.

Even if it's just passing along the secret family recipe for Cornbread Dressing.



Thursday, November 12, 2009

Been Missing in Action Here

I thought maybe I had a flare. Felt lousy, my knees hurt, and had skin issues, especially with what I had years ago -- pittacea (sp) or little red spots showing as blood vessels close to the skin burst and leave a mark. This was on one upper arm. The other upper arm, not to be outdone, had a dry, scaly patch, which I unconsciously scratched until it bled.

Since I had a rheum appt. in the next few days, I let it go and didn't panic. I got my lab work done on Friday before my appt. on Monday afternoon, and I asked them to send the results asap to my rheumy.

Arrived at his office, and no lab results. He checked me over, and of course the skin issues had disappeared by that time. My knees weren't as swollen, either. So-- probably wasn't a flare, nothing to worry about. But then he suggested I might want to drink some tonic water every night....without the gin, of course. He suggested lemon juice or something similar to cut the taste.

Well, tonic water is quinine, and plaquenil is quinine. So instead of increasing my plaquenil intake, I'm assuming this is the next best thing. And you know what? The large bottles of tonic water are pretty inexpensive.

Feeling somewhat better this week. Maybe I was just tired -- after all, any 71 year old woman gets tired every now and then. The other symptoms were so minimal, there was no reason to worry.

So I've been drinking my tonic water every night -- about a half glass with lemon juice, and I'll tell you's still bitter.

Excuse me. I'm going to the liquor store for gin.


Wednesday, November 11, 2009

One More Time...Is It Life, or Is It Lupus?

I'm sure I've asked that question before. I've been living with lupus for over 21 years, now, having had the usual pain, fatigue, some skin problems, med all know about that. I've been in remission for a long time, now, and intend to stay that way. (I can hear lupus snickering at me right now.) By taking my meds, avoiding stress as much as possible, and getting enough sleep and rest, I've had a "sor far, so good" attitude.

Until a couple of weeks ago. I began feeling kind of "lousy." Maybe it was a cold coming on. Not bad enough for it to feel like the flu, but enough to make me feel fatigued. I had some strange blister-type things in my hair and along my hairline around my face. Then I had some signs of pitacea (sp?) the little red dots that show up meaning you have had some kind of blood vessel burst. Just a few. On my left upper arm. On my right upper arm, I had a scaly patch that I unconsciously scratched until it bled. Just a little.

My knees started to hurt. Oh, my. Was I having a flare?

I had a rheumatologist appt. the next week, so after I got my lab work done, I felt sure something would show up indicating a little flare. I certainly wasn't imagining things, because with the increased brain fog, my imagination had gone on strike.

So it was with some kind of hope ---

oops. Computer cut off this really great post. But you get the idea.


Saturday, October 31, 2009

Possibly a Flare?

I've been thinking this last week that I'm possibly having a little bit of a lupus flare.

Why? Because my energy level has dropped and I have a bit of a rash on both arms, turning into pitachea (sp?) that I had years ago when I was really really sick with lupus. Before I got on meds, before I was diagnosed, I had these weird little red spots pop up on my arms. After I got diagnosed, my doctor said that was pitachea, little blood vessels near the skin breaking and forming red spots on my skin.

My left arm definitely has the spots, still. My right arm was a bit different, in that it had a scaly patch of skin on my upper arm that I scratched until it bled -- unfortunately. Then I got some little red dots.

I don't recall having the scaly patches of skin before. But each person's dealings with lupus are so different, it's not unusual that I'd now be experiencing something new.

And if those are the only signs of a flare, that's okay with me. It could be a lot worse. It HAS been a lot worse.

So I fortunately have a rheumatologist's appointment on Monday afternoon. The lab work that I did on Friday may or may not show some kind of flare. I've been around this disease long enough to know that lab work doesn't necessarily show anything. I may have had a hit and run thing that disappeared before I got the blood drawn. And it may not even be a flare, after all.

We'll see. I'm just glad that I'm feeling a bit better now, and will certainly feel better after seeing my doctor and finding out if there's any truth to what I'm thinking.

And what to do about it, if it is a flare. It's been so long since lupus has been active, I don't remember how we treated a flare.

And that's a good thing.

Wishing everybody with lupus a pain-free day and a steady path toward recovery.


Thursday, October 8, 2009

Be a Part of My New Book!

I've received some contributions to my new project, but can always use more. I just sent a note to one lupus support group thanking them for their honesty and intensity of emotion in dealing with this disease. I also reminded the group that entries don't have to be "perfect" by way of grammar and punctuation -- my publisher and I will take care of that issue. Besides, things written in the heat of the moment are the most honest, and sometimes even I get carried away with typos. Really. Heh.

I think to make my blogging day easier -- I don't post every day on each blog -- I'll consolidate all my book blogs into one. My lupus blog, of course, will remain, as will my military brat blog. I'll keep my Aged to Imperfection blog, though. I have entirely too much fun with it to let it go.

Today, in my lupus life, I'm kind of aching. I attribute this to the change in the weather. A cold front is blowing in -- again. We here in N. Central Texas are really being battered by rain and thunderstorms. It's a good thing I ran all my errands yesterday so I don't have to be out on slick streets today. Texans don't drive very well in rainy weather. We're generally not acquainted with so much rain on the road that we tend to drive "as usual" even in rainy conditions. As for ice.....well, you can imagine.

Okay, I'm off to consolidate my blogs. Before the wind takes out the electric power lines......


Tuesday, September 22, 2009

How Weather Can Affect Us....

Well, at least it affects me. It's been raining in N. Central Texas for almost two weeks straight, now, and I'm hurting. Hurting makes me cranky.
I don't know if it's so much the lupus that makes my muscles and joints ache as much as it is the fibromyalgia. At any rate, it's understood among lupus patients that a barometric pressure change can do a lot of damage to our bodies.
I knew one young woman several years ago who related the story that she was driving from N Central TX to Louisiana and encountered a severe drop in barometric pressure. So much of her body was crippled, she had to stop in a small town and go to the ER. They kept her for several days, which blew her schedule apart, but after receiving IV doses of prednisone, she was able to continue her trip.
Not all of us have this response, though. That's one of the things about this disease: No "one size fits all." I do better in the colder weather than in the heat. Even when I go outside in the summer heat wearing long sleeves, long pants and a broad-brimmed hat, I am completely depleted of any energy I might have had before stepping out the door.
In the colder weather, unless it's very damp, I do much better with my energy level. Some people cannot function in the colder climes, and part of it may be due to Reynaud's Disease, where the feet and hands turn red and chapped looking and tingle. This can occur even at the frozen foods section of the supermarket. It doesn't seem to bother me, though the lupus person right next to me is wearing gloves as she sorts through the frozen goods.
I think I've done enough typing for today. My hands ache and I'm making too many errors that even spell check might not catch.
Everybody, take care of yourselves, okay?


Contributors Adding Up.....

Thanks to all who have so far indicated their willingness to be contributors to my newest lupus book. They have received their Contributor's Release Forms and general outline of what this book will be about, and I'm excited to see this project moving along.
My request is on twitter and facebook, as well as several lupus online support groups, and I'm talking to the local chapter of the LFA to see what ideas they may have.
I might add that my first book, Diagnosis: Lupus: The Intimate Journal of a Lupus Patient, has been endorsed by the LFA's education committee as Recommended Reading. I hope to gain this distinction with this new project also.
The thrust of this book is relating, in many different people's words, how lupus affects each person differently, to what degree, and how each person copes with this disease. Or not. I have invited lupus patients to choose one of many topics to share, or even to "vent" their frustrations, and we can extrapolate from those messages any or all topics to include.
Contributors will be anonymous, as will their locations. Their privacy will be maintained throughout the process, and their messages will be sent to a separate email account:
Let's spread the word so we can better educate and inform those "civilians" (those who don't have our disease) and gain a greater awareness of what happens to our bodies, mind, and spirit when this disease strikes.
Pass this message along. Somebody needs your help.


Thursday, September 3, 2009

What About the Swine Flu?

I'm a member of several online lupus support groups, and one of the more recent topics was that of how do we cope with the possibility of contracting the swine flu?

I was at the doctor's office yesterday, just for a regular yearly checkup, and I asked about the flu shots -- both kinds, regular and swine flu. She's not giving the regular flu shots; I can get one at my local pharmacy, like I did last year.

And she suggested I NOT get the swine flu shot, anywhere, anytime. We don't know what's in it, was the general agreement, and people with lupus don't need to experiment with any kind of medicine or inoculation.

Okay. So I woke up this morning with a sneezing fit, feeling kind of feverish. I took my temperature, and YEA, no fever. Just an ordinary allergic reaction to good old N. Central Texas air. Maybe the neighbor mowed his yard. Finally.

So that presents another question (not the yard, though). What do we do to avoid getting the swine flu?

I already don't go out much, due to the Texas heat and intense sunshine of the summer. I shop at a grocery store that provides sanitary wipes for their cart handles (I always picture a baby drooling all over the handle) and I use them faithfully. If I see or hear someone with the "sniffles" or is coughing, I go the other way. At other places, or with friends, I haul out the hand sanitizer and use it before I do anything else, such as eating lunch, or shopping in a department store.

Is this enough? What about masks? I see lots of people wearing masks, although I must admit, I see this mostly on television, where they are showing the populace of such cities as Mexico City or Hong Kong, not Dallas-Fort Worth. Besides, I've heard that wearing those masks really doesn't help much.

I don't like avoiding crowds, just to avoid the swine flu. I mean, my life is limited enough as it is, with restrictions placed on my simply having a disease that strongly suggests I avoid the sun and rest as often as necessary.

So I'll probably take my chances on driving to the mall, parking my car and wearing a broad-brimmed hat as I walk to the main entrance. Then I begin my stroll twice around both levels before I'm pulled into a certain store's seductive window display (a bookstore, of course!) and then it's time to go home.

Where my granddaughters, ages 9 and 4 years, have arrived for my son and me to watch while their mama goes to the hospital to be with a friend during childbirth. Okay. They're active -- very active little girls, especially the 4 year old who insists she's a horse, and crawls around the house, neighing loudly. The 9 year old has brought her laptop computer and settles in at the kitchen table to play games.

They don't look sick. Neither of them sneezes or coughs, and they don't look feverish. But the 9 year old announces after an hour or two, "It's time for me to take a Tylenol. My mom says I have a cold."

Oy, vey. I have hugged her, played on her computer, handled her lunch dishes and milk wonder I woke up this morning thinking I have a cold.

There goes one of the recommendations -- that I avoid crowds, or people likely to have a cold or the flu.

Where grandchildren are concerned, I'll still hug and play with the little germ factories. And I'll take my chances with the swine flu.



Monday, August 31, 2009

What's in a Name?

I think people who have lupus, or SLE, should have a name for themselves.

One reason I think we need a name to describe us is because I come somewhat annoyed at such names as "Lupus Victim" or "Lupus Survivor." I am not, nor have I ever been, a victim of anything, particularly of lupus. And yes, I am a survivor, but that connotation smacks of a lucky circumstance, such as " I survived a hurricane" or some other natural disaster.

I'm not mocking others that are proud to call themselves A _______ Survivor (fill in the blank with the name of a disease. They can call themselves anything they want. I just choose not to use those terms.

Now, I've seen the term, Lupie. Not so fond of that, either, because while it reflects a light-hearted touch, it also brings up the derogatory impression of someone who is a bit -- well, strange, or inebrieated, or "loopy."

So I herewith present some options I just made up. Read at your own peril.



Lupusette (for a woman)

Lupusor (male)






Well, you get the idea. It's late, and my nighttime meds have just kicked in and this Lupus person needs to get to bed.

If you have any suggestions for a name for those of us who have lupus, feel free to leave them in a comment. I promise I will take any and all names under consideration. Since I am broke, as nearly all of us with lupus are, there will be no prizes awarded. However, if I find one that particularly tickles my funny bone, I promise I will use that name in my next post here.

Have fun.


Thursday, August 27, 2009

Same Disease, Different Outcomes

Oh, how I wish we Lupies, Lupans, Lupusonians, whatever you want to label us...(anything but lupus victim!) had clear-cut symptoms that showed up instantly on blood tests, that the appropriate drugs would be prescribed that would work for all of us without nasty side-effects, and that family and friends would somehow miraculously understand and support us.

But the more I interact with others in sharing about our disease, the more I find we are incredibly complex creatures dealing with an incredibly complex disease.

Some of us have headaches, unrelenting and unexplained. Some get headaches only after taking a certain medication. I had joint pain as one of my first symptoms; I know another woman who suddenly had complete kidney shut-down. That was her first and only clue. Some can take cytoxan, imuran and plaquenil; others get violently ill or have other bad side-effects. And some of us have rheumatologists who know what they're dealing with and are very attentive to our needs; others of us come away from yet another doctor who suggests (again) it's all in our pretty little heads.

Lupus is the most frustrating, irritating, inconvenient, painful, psyche-damaging, depressing, deadly disease I can think of. We get no respect because, as we are told constantly, "You don't look sick." Of course we don't look sick. Sick people are supposed to be thin, gaunt, and hobbling around with a death mask on. On the other hand, and this is my experience, shared by some but not all, we are -- ahem -- fluffy. Overweight because of large doses of Prednisone. Retaining water like crazy. Our cheeks look like chipmunks. So how could we be so sick, when we're so fat? I used to add to my explaination about lupus, "And I'm overweight because of the medications I'm on." But that doesn't impress some people at all. They still can't see it.

If we had a broken arm, our arm would be in a cast, and people would offer sympathies and help with carrying packages, etc. Or if we're in a wheelchair, they assume we're somehow lame and flock to our sides, providing any help they can give.

But let me park in a handicapped parking spot, put the parking permit on my windshield, and step out of my car, and some busy-body will frown and snap: "You're not handicapped. You shouldn't be parking there." I always want to give them a long explanation, but I've resorted to my standard answer: "There are all kinds of handicaps. Ignorance is one of them."

Day by day, we cope as best we can. Some days are better than others. Right now, I'm in remission, or at least my doctor said the last time I went in to see him. But I know lupus is capable of launching a sneak attack at any moment, leaving me back where I started from -- or even worse.

But I can't let that threat hang over my head. I have a standard reply to that possibility, too, when anybody asks. "I can go outside and get hit by a truck, too."

And couldn't we all. One insensitive person once threw this at me: "Lupus is fatal, isn't it?"

I smiled sweetly and said, "Well, life is fatal."

Today, I'm okay. And tomorrow isn't here yet. Whatever lupus brings tomorrow, I can deal with it. I've had plenty of practice.

Wednesday, August 26, 2009

Never Turn Your Back....

I was suddenly reminded today that I perhaps have been a bit too cocky in my estimation of how lupus is currently in remission, patting myself on the back for maintaining at least some semblance of normal health and normal activities.

Yet I know this is not true. It's sunny and hot here in Texas, and I can't get out in the heat and searing sunshine because I have lupus. I need to stay out of the sun, and the heat is debilitating. I also have numerous seasonal allergies, and am taking decongestants by the handful with each change in wind direction; I'm in North Central Texas, but West Texas dust insists on making a home here. Or it's the moist Gulf breezes that blow up from S. Texas, bringing with it their own particular vegetation that my poor immune-challenged body can't handle.

I need to get up from the computer every so often and bend my knobby knees, rest my arthritic fingers and massage my craned neck; nearsightedness is a habit, even when I bring the computer screen closer to me.

So, when I posted on one of my many online lupus support groups that I had to be careful not to wake that old Gypsy, Lupus, or she would saddle up her horses and ride around my body, looking for sites to set up her campfires, watching them as they flared, burned down and smoldered, before she set off again for another body organ to destroy.

So, shhhhh. Don't speak too soon about being in remission.

Lupe just might want to prove me wrong.


Monday, August 24, 2009

New Book Coming Up

Some of you may know that I wrote and published a book about my journey with lupus, titled: Diagnosis: Lupus: The Intimate Journal of a Lupus Patient. ( and The book consisted of selected entries from my daily journal over a three-year period as I was looking fora diagnosis and treatment of this disease.

And, a few of you might have actually read it! I have received some comments and encouragment from other lupus patients -- or lupans, or lupies, or whatever we are called at any given moment. I've been on several on-line support groups recently, and one of the members on one of the groups innocently asked,"Are you planning on writing another book on lupus?"
Well, that, as they said in the olden days, "gave me pause."

I wondered, "Why re-invent the wheel?" And then I thought, "Why not?" This new one would be from others' experiences, drawn from our many personal stuggles with meds, doctors, (the good, the bad, and the ugly) dealing with family and friends, and the outrageous remarks we hear from others-- one of the most irritating, although meant to be encouraging, is: "But you don't look sick!" I always interpreted that well-intentioned remark as "How can you be sick when you are so--- so-- uh....(I usually step in and say, "Overweight? Fat?) Because I'm taking tons of prednisone and other meds that puff me up. It's either that, or deal with the pain of swollen joints and other parts of my body that hurt."

Doctors that insist emphatically "You can't have lupus; you don't have the butterfly rash." Or worse, "There's nothing wrong with you. Go home and forget about it."
Hospitals that abuse us physically and emotionally, running tests that actually contort already pain-wracked bodies and then snap at us to "be still, or I'll have to run this again."
Families that don't understand how we can be up and doing things one day and can't get out of bed on the next. '

Friends who try to understand when we cancel plans for an outing, but who soon stop even asking us to join them in some event, because we just might not be able to go.
And ourselves, since we can sometimes be our own worst enemies by not asking questions of our doctors, demanding answers to our questions when we finally learn what questions to ask, and feeling sorry for ourselves to the point where we're no good to anybody, least of all, ourselves.

So, I'm asking anyone who has lupus, or is suspected of having lupus (SLE or discoid or both) to please email me or leave a comment on this blog: Would you like to contribute to my upcoming book? I am working on several things in advance for this to happen: Refining a list of suggested topics for your comments and setting the format.

For those who express an interest in taking part in this process, let me assure you
I will be sending each participant a Release, stating that my publisher (Vanilla Heart Publishing) and I will preserve your anonymity and your privacy by giving you different names and locations. All comments will be edited for brevity if needed, and for content and clarity (i.e., spelling and grammar) while the intent and tone of each comment will remain intact. While you might wish to "trash" various physicians, I will change the names and locations of those individuals, also. (We don't want a lawsuit!)

Finally, we need to start this process soon, as this book will be scheduled for release in May, 2010, to coincide with World Lupus Day observances.

Oh, and a percentage of my profits from this book will be donated to the Lupus Foundation of America. While the details have not yet been worked out at this writing, my publisher is also planning a promotional event to benefit both readers of this book and for lupus research.

If you would leave a comment, please include your email addy and a brief description of your own issues with SLE or discoid lupus, such as I have in my signature line below.
If you would rather reply by private email, please send it to me at

And many thanks in advance. I'm excited about this new venture. I hope you are, too.

Marilyn Celeste Morris
dx'd with SLE in 1988 at age 50 (making me very old, I know) after a 3 year, five doctor search for diagnosis and treatment of this sneaky disease. Currently in remission.



Thursday, July 30, 2009


I think I have found an answer to the mysterious "auras" that come upon my eyes every so often, disrupting my activities by limiting my vision somewhat in at least one eye for about 15-20 minutes.

Thank God they're not painful nor accompanied by the classic migraine symptoms. My eye doctor and my rheumatologist tend to shrug them off as "painless migraines" without providing much more information. My eyes are not being harmed in any way, it's not painful, so it's just "something that happens that's not to worry about."

That's because they're not seeing out of my eyes. I'm in the kitchen, putting dishes away, and they all of a sudden have a halo around them. Pretty colors, like a rainbow, but they're not supposed to do that. I tolerate this visual disturbance as long as I can, but figure handling sharp knives is probably hazardous to my health, so I go lie down and close my eyes until the shining lights fade away.

So I've been on several online lupus support groups, and from what I'm reading, this may be part of the lupus working on the central nervous system. It figures that every other part of my body either has been or is now being affected by this hit-and-run disease. I'm in remission, but this crazy disease doesn't know that. It still has a campfire set up in various parts of this tired old body and occasionally, it will fan the fires to let me know who's boss.

That's just what I figure is going on. Not to worry. It could be worse.

Our theme song.


Wednesday, July 22, 2009

Good Report at Rheumatologist's

I usually dread going to see the rheumatologist who treats me for SLE. Not that he's abrupt, or non-caring, or anything in his personality -- it's just going to the doctor, period.
Because each time I go into his office, no matter at what stage my lupus is in at the moment, I am once again reminded I have this mystifying disease.
My lupus is not like another person's lupus. I may suffer from RA symtoms, in my joints, while the next person's lupus affects her kidneys. Some have the discoid rash, I don't. Some can't tolerate medications used to treat lupus; I have fortunately not had that experience.
And, all the past, unsuccessful visits to five or more physicians who offered me little more than, "It's just rheumatoid arthritis," or, "Nothing is showing up in your blood work that you have lupus, so you don't have it."
Finally, this particular doctor knew what he was looking at. And he diagnosed and treated me, and today I'm in remission. In fact, he said I looked better than the last visit. Which made me wonder, "gee, I wonder how bad I looked 3 months ago."
We went over my medications, or rather, I told him what I had discontinued and what I had substituted: I d/c'd Lyrica, since it had no effect on the fibromyalgia, and substituted Cymbalta, prescribed by my -- ahem -- psychiatrist for depression AND it treats fibromyalgia, too. So he agreed, one pill for two effects is a heck of a deal. I had called my shrink telling her I didn't think the Celexa was working any more, and she suggested Cymbalta, which would also help the fibro. And after about a month, I'm feeling soooo much better, have some energy, and I don't have to take a long nap after lunch.
I told him I had d/c'd Toprol because it caused dizziness, and when he took my blood pressure, it was just fine. 120/80. I still take the Ramipril, a blood pressure med to protect my kidneys, so evidently it's sufficient by itself. One less pill.
If this type of discussion is foreign to you, I have to tell you that you have to be proactive, and not only ask your doctor for suggestions, but tell him what you think you need. You know your own body better than anyone, and your own particular "brand" of lupus.
Try it. It works. I'm sure glad I learned to do that, and I'm much better today.

Thursday, July 9, 2009

So Michael Jackson had Lupus.....

....After all, the King of Pop appeared frequently in public with an umbrella, a mask, a glove, long sleeves and long pants, and often was in a wheelchair.
Not that all lupus patients manifest these symptoms. According to reports, he suffered from the discoid type of lupus, which means it affected his skin. Those with systemic lupus have these same manifestations, and then some. And each lupus patient has his own particular set of symptoms, whether it be joint pain, rashes, kidney involvement, pleurisy, or neurological involvement.
Several of the lupus support groups I frequent have asked why on earth he didn't make his disease known to the public, so he could help publicize this puzzling illness. On the other hand, others in the groups have remarked, in no uncertain terms, "we don't want that weird-o representing us. We have a hard enough time explaining ourselves as it is."
And they may be right. Lupus-induced or not, some of his behavior can best be described as bizarre, and we certainly don't want to have that stigma attached to us as a group. Granted, we experience something called "brain fog" and sometimes our mental capacities can be diminished to the point where we become forgetful or confused, but not all of us have those experiences, either. Some of us have pleural effusion, some have kidney involvement. Some have rashes, some don't.
I never developed the butterfly rash. My presenting symptom was joint pain. I know one woman whose only sign of lupus was that her kidneys quit working. No other warnings, just one day she realized she hadn't urinated in a day or two.
No wonder people are mystified by this disease. Those of us who have it continue to be baffled by strange pains, rashes, mouth ulcers, breathing problems, neurological symptoms, and other off-beat, unusual complaints. Right now, I might be having a small flare, and I don't know how long it will last, or if it will progress to a full-blown, hospital-justified illness of unknown severity. Or it may be that I'm just feeling my age, in the Texas heat, and in general having a bad day.
I'm just glad that I don't have to feel responsible for explaining this disease to the general public. And maybe that's why MJ didn't explain his illness to anyone, either.
It's one of the hardest diseases to diagnose, treat and explain to others, even when we think we know all about it.
Lupus continues to surprise us.

Friday, June 26, 2009

Pure Speculation, Here....

.....but I'm wondering if Michael Jackson had lupus? Think about it.....those who have lupus try to stay out of the sun (MJ carrying an umbrella, all covered up with long sleeves, etc.); skin changes occur (recently he was seen with some "marks" on his skin; and I don't know if this is true or not, but I've read somebody who stated he had been receiving dialysis (kidney troubles?) Plus, whether or not the painkillers "did him in", he had evidently been in a great deal of pain most of his life and become dependent on several pain-killing drugs. Recently seen in a wheelchair.

Sounds like lupus to me. Despite the protests that he evidently underwent, and passed, a rigorous physical exam for more insurance coverage, I believe he could have done that, on a good day. Those who know lupus patients, know that we have our good days and our bad days. And, when hard pressed to "perform" such as passing a physical exam, we can gather our strength and do whatever is necessary.

So now we're waiting on the autopsy report. It will probably take several days, if not weeks, for the definitive cause of death to be determined. This much we know.....he was taking painkillers. Whether they were too many, combined, or an overdose of one particular drug (Demerol has been suggested) we "lupuies" know how easily that can occur.

If it is lupus that killed him, I'm really gonna be ticked off at him and those around him.....Because he could have become a spokesperson for our disease and helped fund research efforts for a cure and/or better treatment for this aut0-immune disease.

So why the secrecy? Was this deliberate or just another of his "quirks" that he didn't want the public to know too much about him?

Okay, let's look first at the stigma of having an auto-immune disease. Hmmm. Sounds like AIDS? That's the first comparison the average joe comes up with. Well, yes and no. In AIDS, the person has no immune system. In Lupus, the person has an immune system that is so much in overdrive that it attacks organs of the body, mistaking them for a foreign object.

Second, if it is Lupus, more people of color contract this disease than other ethnicities. Knowing his propensity for denying his race (pure speculation on my part, remember?) by trying to look "white", he might have been ashamed of having a disease that so stereotypes a race.

Third, if it is Lupus, he might have denied it even to himself, giving only lip service to his doctors' treatment and instructions and not getting enough rest and avoiding stress if possible. After all, THE Pop Icon of all time can't possibly have a disease, can he?

And lastly, I have to tell you that if indeed he had lupus and denied it, I will really be ticked off that he didn't help himself or others by publicizing his struggles with this disease. In the instance of Farrah Fawcett's death, I applaud her for facing cancer head-on and talking about it, even to the point of having her struggles put on film for others to gain strength from. Not so if MJ died from lupus or complications of lupus, as it may be.

What a loss, not only of an icon, but of an opportunity to inform, encourage and help with research into why lupus is such a cunning, baffling and powerful disease.

I hope I'm wrong.

Saturday, June 6, 2009

Lupus and Childhood Abuse?

I've been reading messages on an online lupus support group where the question was raised that possibly some of us suffered some kind of abuse, thus leading to such stress that it led to developing lupus.

Although I didn't experience any kind of abuse in my childhood, it dawned on me that since so many of us with lupus live with or were raised by dysfunctional family members, we should all probably join one of the 12 Step Programs.... Like AlAnon (which I "are" one, having been married to two alcoholics) or Adult Children of Alcoholics (ACOA) which teaches you how to deal with people who manipulate, deny and mentally or physically abuse you through alcohol or drug abuse, and I think we could include family members who are in denial about our pain and our disease.

See, family members who deny our disease are probably (1) too scared to deal with it, thinking we're going to die at any minute, and then what would they do? or (2) too damn enmeshed in their own perceived "right" worlds where disease doesn't exist and God heals everything "if only we got right with God."

Like blaming a cancer patient for getting cancer -- "Well, he shouldn't have smoked....she shouldn't have eaten all that fatty food.....he shouldn't have ingested any aspertame... ...only angry people get cancer because they repress it......he got cancer because he abandoned God and now he's being punished.... " I've heard all that. I've had people tell me that if only I "got right with God" I'd be healed.

I'm not negating the healing effects of prayer, and in fact, I've been to a couple of "healing services" one of which,about a week afterwards, I threw away my cane since I wasn't dealing with falling down from vasculitis in my ankles. One was a fundamentalist church service and one was a Catholic healer, and I got relief from both, even though I went with skepticism and came out kind of wondering what the heck just happened? I developed an answer for those who insist that only God can help me -- their God, btw -- and I smile and say Thank you, I appreciate your help. Oh, and this Episcopalian attended a healing service at her own church and can't help but think it led to my feeling better, if only a little bit.

But a 12 Step Program such as above couldn't hurt, either. We learn to deal with people who attempt to manipulate us, in one way or another, or who cause us even more pain than the physical pain we are in. Look 'em up in the local phone book. They're there for you, just like we're here for each other. Heck, they might even be online; I haven't checked! Meanwhile, "Don't let the bastards wear you down."

Tuesday, May 12, 2009


I've been reading a lot about the medications some people use when they have lupus. I have by no means used them all, but several have worked for me.

First, I was prescribed Prednisone. This steroid relieves the swelling and thus the pain associated with the pain. It worked for me. The side effects, though, are not enjoyable.

First, I gained a lot of weight. I think every so often about a woman I knew who was a model, and she had gained 100 pounds and lost the life she used to lead. I almost hid from others, ashamed somehow of my modest 30 pound weight gain, and lacked the new clothes for my new, larger figure. But I should have known strangers' opinions don't matter, and my friends still love me, no matter what size label is in my clothes. And I began losing my hair. Not sure if that's from the steroids or what came next:

Cytoxan and Imuran. I had to take those meds, can't remember which one came first, because I developed vasculitis in my ankles. Couldn't walk very well. Had to wear lace-up shoes and carried a cane. Talk about embarrassing....falling down en route to a job interview and stepping out of my shoe while being dressed down in my boss-of-the-day's office. One of the meds caused me to have a taste in my mouth as if I had licked a dirty ashtray. Needless to say, I lost my appetite.

Then came Plaquenil. I took Plaquenil while I was still taking Prednisone, for three months; then the doctor weaned me off Prednisone. The Plaquenil has worked well for many years and I can live with the side effects: I have to protect my eyes and have periodic eye exams.

But it's worth it.

Monday, May 4, 2009

Pain is Pain.........

I had taken this blog down a few days ago, and then realized, as I was trolling through the Internet, that some comments and references to this blog were still out there. What was I thinking? I was missing some opportunities to blog directly about lupus and share my blog posts with others.

So I took a deep breath and created this blog again, hoping I could have the same title....And yes, I can!

So what can I say today about lupus? I'm feeling more effects today from fibromyalgia than from lupus. My muscles hurt, all over. Kind of like when my joints hurt, all over, when lupus was rampant in my body. I don't know which hurts more.....but it doesnt' matter, anyway. Pain is pain. And I know it will get better. Maybe not today, but it will get better. That's what I kept telling myself -- and others -- who were experiencing pain from SLE. Take your meds, and take them regularly. Don't miss any doses of Plaquenil, or prednisone, or Imuran or Cytoxan -- whatever your rheumatologist has prescribed. A Tylenol every now and then, if it's suggested by your doctor, could also help.

In the meantime, it's a Mean Time.