The Lady With Lupus

Looking for help with another autoimmune disease

2012-02-16T10:13:00.000-08:00

Well, yeah. I also have diabetes, I think type 1, since I have to take insulin. Recently, I've had some insight as to how my diabetes really needs to get under control. Yet, I have only some vague idea about how to do that, since I'm not sure about being a type 1, type 1.5, or even type 2 that has morphed into a type 1.
I'm getting a headache with all this information. A normal person would probably ask her physician. Heh. Whoever said I was "normal?" I've got some info from Lupies in my yahoo group, who tell me one thing, and recently I joined a diabetes yahoo group which tells me another.
All I know is, I had diabetes controlled by meds (type 2) until I went into the hospital in 2004 and darn near died from God knows what (still no diagnosis as to what nearly took my life) and when I came out of Intensive Care, I noticed they were treating me with insulin injections. So I've called myself a Type 1, insulin dependent diabetic.
Lupus is an autoimmune disease, and so is diabetes. My thinking is, two autoimmune diseases, and how do I control my blood glucose when lupus is kicking my butt? And, this last week, I've had to take a Medrol Dosepak, which put my glucose readings waaaay up there.
Stress also increases both my lupus condition and diabetes, so go figure. I try not to get stressed, but when your life is ruled by numbers on a test strip, it's hard not to freak out when I see the numbers that are too darn high.
If anybody has a clue, let me know. Meantime, I'll ask my endocrinologist when I see him next week. I just hate going to get my A1C beforehand.

Lupus

diabetes

It's always something....

2012-01-26T09:04:00.000-08:00

Recently, I've discovered various lumps, bumps and humps on my poor body...No cracks, now, about my age.....this is not just old age. I found.most glaringly, a cyst on my left hand.
Upshot was, after consulting with my PCP, she recommended I see a hand surgeon. Okay. Hand surgeon (I resisted the somewhat gnarly comment about seeing a "left hand surgeon.") took xray to make sure my bones/joints weren't involved, and then he suggested this could be due to past steroid use. Heh. Of course I've had steroid use in the past. All lupus patients do. So what to treat this cyst with?
Why, more steroids, of course. And a splint so I wouldn't use those fingers as much and give my hand a rest.
Well, the cyst faded away, of course, but .....You just knew there would be a "but" didn't you?
I came up with a cyst on my breastbone. More specifically, right below my breastbone.
Back to my PCP. Just to make sure it was just a cyst. Too close to breast tissue for me to ignore it.
She agreed, after a brief examination: "A cyst. And it's not impinging on breast tissue, so let's just watch it and it might just go away."
I agreed. And it's gone away.
But I'm sure it will pop up again, somewhere.
Come to think of it: A couple of years ago, my PCP found a lump in my left breast. Probably nothing, but she sent me to a breast surgeon. This surgeon sent me for an aspiration of the lump.....I watched as the needle went in and sucked out what was essentially, fluid and "junk." Then the contents were sent for exam. It was recommended I have the cyst removed and biopsied. Everything came out just fine. No malignancy. Just a fluid filled cyst.
And that was the beginning of this little series of events.
Can't wait to see where another one will pop up......
Never a dull moment with lupus.

Lupus

Flares and stuff....

2011-10-21T08:19:00.000-07:00

Lupus. The gift that keeps on giving. Sailing along, feeling fairly decent for a while, I encounter a new symptom......I have vasculitis in my legs.
Not to worry. I'm put on prednisone, once again. Small amounts, this time for just a couple of weeks, and then I taper off.
Okay. That's not too much to put on a lot of weight. And the vasculitis fades.
However, I also encountered a UTI.....which calls for antibiotics.
Not a great combination for me.
So I had a follow-up appointment, everything is back to what I laughingly call "normal."
And I casually mention that my heels hurt. Just my heels.
Doctor takes a look, runs his hand over my heels, then up to my toes. Heels hurt like heck. Rest of the foot is okay.
"Bone spurs. Get some inserts for your shoes. And don't go barefoot."
Whoa, hold on there, pardner. I LOVE going barefoot in the house. Even in the wintertime. I will wear warm socks when it's really cold, but otherwise, I'm shoeless.
I manage to croak out, "Oh, No."
He says it again. So I'm defeated. I don't want to hurt any more, either.
So I stopped by Wal-Mart and got some nice, comfy houseshoes with a good heel support, and some shoe inserts, three pair in a nice package. I put them inside my favorite shoes and went off to another doctor's appt. yesterday.
And I'm amazed at the difference. My heels don't hurt.
At last. Simple.
For a complex problem, a simple solution.

Lupus

The Cards We're Dealt: Living with Lupus Erythematosus

2011-09-22T09:56:00.000-07:00

I've finished the rewrite of my first book about lupus, using a few of my journal entries and adding comments by other "Lupies."
I'm hoping I can embed the cover in this post and a small excerpt.

My Search Begins

From My Journals

VICTIM: A living being used as a sacrifice in a religious ceremony, a person or thing destroyed or hurt in the pursuit of some object; one injured or killed by some misfortune or calamity; a sufferer from mental or physical disease; a dupe.

SUFFER: To feel (up-bear) what is painful, disagreeable or distressing; endure with pain or distress; as to suffer a wrong; to feel or bear upward, as to suffer pain; to be affected by, exercise, undergo; to allow; permit; To experience pain, loss, distress. Endure, support, tolerate.

I searched for a label to pin on my puzzling symptoms:

The inability to type all day at a computer. The inability to sit, stand and walk for eight hours in a day without extreme fatigue. The inability to understand and implement simple verbal instructions due to a puzzling and devastating “fog” that enveloped my cognitive functions at crucial moments. And, if it hadn’t been so critical to my job performance, the temporary loss of verbal ability resulting in garbled and stuttering answers to my supervisors’ questions. Needless to say, I was “let go” several times.

Some diseases begin so dramatically, so definitively, that there is no question in any physician's mind as to the diagnosis. A lump in the breast calls for immediate biopsy and lab tests. A sudden sharp pain in the chest sends the patient to the emergency room where high-tech equipment confirms the presence of heart disease.

Not so with Lupus. This disease presents itself with such a myriad of symptoms that its sufferers doubt their sanity. Pain, stiffness in the joints surely must mean arthritis-- or, as several of my former physicians dismissed it casually, “After all, at your age, just learn to live with it.”

Sudden and dramatic weight loss, a boon to any woman struggling with her self-image ("Well, I see you've lost a lot of weight recently. Good for you; keep it up.”) Instead of an alarm that something is wrong. Other symptoms, such as extreme fatigue cause even the patient to question herself. “Tired? How can I be so tired that I just want to lie down and not even move? I must be lazy. No, I really have to nap before dinner.... what is wrong with me?"

Weeks, even months pass, with no improvement. Symptoms worsen. After the family physician, his knowledge exhausted, extensive lab tests reveal nothing unusual, the patient is labeled a hypochondriac. There is really nothing wrong, she is told.

But the pain makes believing this difficult. While seated on a stool in the shower, unable to stand, the woman notices in horror that large clumps of hair are flowing down the drain. When she manages to pull herself together for some social event, she teeters on the brink of exhaustion only to be scolded on the way home by her husband/companion/family:

"I don't understand how you can be so tired all the time. The doctor says there's nothing wrong, with all the expensive lab tests...." leaving the rest of the sentence unspoken. “It’s all in your head.”

After a time, after months and years of unrelenting, unforgiving, baffling, excruciating, agonizing, subtle, intense, bouts of fatigue and other odd symptoms. resignation sets in. If relationships are good to begin with, the family considers the patient somewhat “strange,” and tolerates her odd behavior pattern with dark humor, somewhat like keeping a crazy maiden aunt locked in the attic. Already strained marriages or other relationships, on the other hand, crack wide open and the partner's psychosomatic “illnesses” provide a good excuse for leaving the marriage or severing the relationship.

Even within the community of family or friends, an undiagnosed Lupus patient is left to cope as best she can --— feeling useless, burdensome to others, sometimes to the point of suicide.

After all, nobody can believe that this person who shows no obvious physical signs of disease—-is indeed, ill - in fact, she is ‘glowing with good health," apparently, and gaining weight, to boot. The weight gain, moon face, trunk swollen with an extra twenty or thirty pounds, on average comes after massive doses of Prednisone quells the initial pain of the disease but the toll it takes on one’s body, and emotions, begins to show. A young woman who had been a model in her pre-Lupus days, gains one hundred pounds, breaks a hip through necrosis, loses her marvelous long black hair, can’t find work due to the pain involved in simple movements, moves back to her parents house, and she becomes suicidal. There is nothing left before her except more pain, more days full of idleness, seeing her swollen body day after day negating the happy, vivacious creature she was a few short months earlier.

I was a little older than the typical Lupus patient, but I fit the other profile. Lupus patients (or, Lupies) are busy people, working and playing 25 hours a day. They don’t know when to quit; they are perfectionists and they have an unquenchable interest in nearly everything.

Their pain threshold is astonishing; I was typical in the way I ignored the first symptoms until they became almost unbearable. Likewise, the tolerance for stress. My motto was, “What stress?” and I was really quite unaware of the tremendous amounts of stress I had been under during most of my life, particularly the last few years.

When I told people that I had Lupus, I got one of several reactions: “What’s that?” or, “Lupus? Don’t people die from that?” “Do you throw fits or something?” One callous person even asked, “Is it fatal?” and I shot back with, “Life is fatal. “

Bless my friends’ hearts; they understood when I had to cancel a social event at the last minute, because I was “crashing” where I had been “fine” a few moments earlier.

How did this disease come to reside in me?

Heredity had a large part in my illness: My mother’s mother, Emily Richardson, was half Native American; my mother was born in Sels, Arizona and spent the first three years of her life on the Indian Reservation there. On my father’s side, I claim a great-great grandmother, Pernicia Blackwell, who had some Seminole Indian background. (Native American Indians and African-Americans are prime targets of Lupus.)

******

11/17/92

I just read what I wrote way back in Sept.

You’d think that things (and I) would have changed.

NOT! I still feel:

Less than, shame, fearful, deprived, restless, irritable and discontent, lonely, definitely so, at this time, resentful, jealous of others’ possession, talents, and praise.

I’m tired of these feelings,

I’m tired of being poor – or of feeling poor. Not managing well? I need – God, you know I need to be able to make my bills (on time) and still have enough left over for medical emergencies, car repairs and a movie out, every so often, without feeling fearful.

2/14/93

My health problems won’t go away. You’d think I’d be reconciled to them by now…I’m not “cured” but “healed” in spirit, at least. Making peace with Lupus at least most of the time.

“Surrender?”

“Retreat” is probably more like what I’m doing.

I’ve been in worse spots than this, and walked through it. I remember when I was in the hospital. Fired. Looking for a job while carrying a cane and wearing a wig and going home each day crying with pain from my swollen legs…rubbing ice on them. God carried me thorough that time…why do I disbelieve now?

I need to grieve. I need to rage. I need to cry for my soul. I have been wounded in many ways, over many years.

I feel my energy is not being focused, but scattered. What is important? What is necessary? What do I need right now? Rest? Probably. I have drawn on my reserves too often, like an overdrawn bank account. There is not much left to draw from. But I ask: “Is it Lupus or is it life?” Is this normal to feel so down – discouraged?

I will get through this.

And come out stronger.

11/12/94

Asthma?

Why am I still struggling with my health when I’m supposed to be in remission?

A trip to the ER early Thursday morning once again shows me that I’m vulnerable.

ASTHMA? Isn’t it enough to have Lupus, diabetes, high blood pressure – what the hell am I doing now with ASTHMA?

I can’t stop living in order to live. I have plans for my future. And these plans do not include illness. I have been called stubborn; that’s not all bad. Another word is perseverance. I know what is important to me, and by God’s grace I will do it. I am doing it. I’ve been through much worse than this.

I have much to be grateful for. My friends and family. Their concern and help.

My fear is that something so trivial might kill me.

More than that, I might die before I’ve accomplished my tasks here on earth.

Surely God has a reason for my being here.

********

Because of Privacy concerns, I cannot include any of the Lupies postings in this blog. But I can post this excerpt:

NOW, SOME STORIES AND MESSAGES

FROM OTHER LUPIES:

When I became too ill and fatigued to attend a local Lupus support group, I turned to the Internet and found a yahoo group called “LUPIES.”

Here was another way to get support and information. I began skimming through the message board, wondering if it would be worthwhile to commit myself to this anonymous group of women. I discovered a pleasant surprise:

These women, from all over the globe, (Australia, Canada, Philippines, and Texas (lol) are bright, articulate, compassionate and knowledgeable about this disease, even if much of it comes from their own experiences in dealing with SLE. I must add here that occasionally, a male of our species wanders into the group, and of course, he is welcomed. However, they are few and far between, and many times, it seems they have found the information they are looking for, and they no longer post. So, Lupus is mostly about women.

They shared their experiences, bad times, good days, vented about uncaring health care professionals, helpful and unhelpful relatives, and how they cope on a daily basis with this enigmatic illness, where there seems to be no set pattern of progression, methods of achieving remission and recovery, and how badly they miss the women they were before Lupus.

I laughed, I cried, I empathized. I then began posting about my own experiences; the good, the bad and the ugly. We found common ground in being disappointed with the vast majority of the medical community who seem surprisingly unaware of how Lupus can be diagnosed and treated. In other words, I say with tongue in cheek, we have a common “enemy” besides SLE.

After belonging to this group for about a year, I proposed to the owners of the list that I wanted to re-write my first book about Lupus, this time incorporating messages from our membership. Those who cared to participate were sent a Contributor’s Release for signature, agreeing that I could publish their remarks. The owners, Sandra, Barb and Mary Mike, agreed, and I began revising my first book, and adding comments from Lupies.

As I read the heartfelt entries and tried to assign categories for ease of reading and understanding, I found that many of the entries contained remarks about several issues at once…. We are sick people, looking for help and understanding about many issues, and many times, they are all rolled together, like an enchilada on the menu of your favorite Mexican food restaurant. Or at the Chinese Buffet: One from Column A, One from Column B.

We really don’t have an Al la Carte Menu. You take what is given.

So, here are some of the entries taken from our Lupies support group over a two or three year period. Looking at unsorted, impossible to categorize messages will be like a treasure hunt for the reader. You may stumble across something that you recognize as being exactly how you feel, or you learn some new information about this disease.

I have permission documents signed by the participants, so they know their words will be quoted as written, from the heart, with only an occasional edit by the author. The reader will notice that some posts are longer than others; and that a few people post regularly.

I’m not playing favorites by choosing the messages for this book. Some Lupies are more verbal than others. Some drop in only occasionally, but with great insight to a newcomer’s questions. The only “rule” is: All of the participants have Lupus or are suspected as having Lupus, and are willing to write to others and expose their feelings, their pain, and their depression. They also offer hope, and “helpful tips” on coping, or small notes on alternative medicines. Each person is welcome to the group for their experience, strength and hope. And, yes, for their complaints, rants, thoughts of suicide, and other issues. Sure enough, the moment someone posts that they want to “give up,” several others add their voices of “me, too!” and relate how they got through that particular phase of grief.

Yes, grief. We have lost our former selves. We have lost our jobs. We have lost or alienated our families and friends. We deny, we bargain, we finally accept. That doesn’t mean we like it.

I also noticed postings that said, more or less, “You play the hand you are dealt. It does no good to ask for different cards, a re-shuffle, so to speak. You were dealt a hand you didn’t ask for. It doesn’t matter whether you wanted it or not. It’s yours. Now, make the best of it.”

I hope you gain some insight into this disease, whether it is yours or you are reading to understand a loved one’s struggle. God bless you if you are. We need support through this process that is ever changing, ever challenging, and ever-misunderstood.

*****

Now in all eBook formats!

Print form to be released soon.......

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Lupus

A Big Ol Flare

2011-08-30T13:56:00.000-07:00

I think I'm having a flare. I have mouth ulcers, feel crummy, and running a bit of a low grade temp....even if the thermometer says "98.6" that's not normal for me. That's a bit of a fever. And thirsty! My gosh, i could drink the lake dry.....although in this drought-stricken part of TX, the lakes wouldn't be that much to drink.....we need some rain. Woke up this morning to the sound of thunder. Just a few sprinkles, then nothing. Back to 103 degrees today.
And if dealing with a flare isn't enough, there is the continuing saga of the Social Security mess made when I made a simple request to file for disability.
I was, for some strange reason, treated as a new SS Recipient, with a welcome and everything. Trying to unravel that error involved three trips to the local Fort Worth SSA office, and today I discovered I no longer exist in any pharmacy files. I know, because Walgreen's had no information on me, and I couldn't get my Lantus.
Besides having lupus, I also have diabetes, and must take Humalog during the day and Lantus at night. It was time to refill the Lantus yesterday. Son went up to Walgreen's and they said I wasn't in their records. Have I died? Evidently.
WalMart gave me a refill of amitryptiline but charged $10.00. I will get reimbursed, I heard when I called my Medicare Provider, Secure Horizons. After some time of clicking and typing heard on the other end of the phone, they said it was all okay, now.
Until the next time Social Security decides I don't exist.
If you want something really messed up, go to any government agency. Tell 'em I sent ya.....

Lupus
Social Security

How Weather Affects Us

2011-08-04T08:26:00.000-07:00

I have a problem with the heat that is currently cloaking N Central TX like a heavy overcoat. Yesterday was 110 degrees, give or take a degree or so.
I'm praying the air conditioner holds out and continues to keep my house cool. I hate to go outside in this heat, so when I have an errand to run, I do that in the early morning, when it's "cooler" -- say, 90 degrees or so.
I know I sound like a big baby, but I literally cannot tolerate the heat.....my body rebels and I might find myself in the hospital if I'm not careful. I also find myself getting kind of paranoid about possibly being stranded on the road if my car conks out....I can hear you asking, "What about the winter time? Wouldn't you just about freeze to death if you were stranded in the snow?" Well, yeah. But I would hope that I have enough good sense to wear protective clothing, maybe even throw a blanket in the back seat, and get out of the biting wind by sitting in the car.....
It's soooo much different in the summer heat. You can't remove any more clothing than what's covering you now....there are laws about that. You can't sit in the car while you're waiting for help -- that would be counterproductive, since the car would just block any vagrant, although hot, breeze. And, anyone with lupus MUST stay out of the sun.
So you can see why this season is hard on me. And on anyone who has lupus.
I'm waiting for October. It might be cooler by then.

The Lupie as Caregiver....

2011-05-30T09:07:00.001-07:00

My 52 year old son who lives with me, has been almost bedridden for the last month. After three trips to the ER, one by ambulance, we finally have a "sort of" diagnosis. Something is wrong with his back. He had focused on his knee, and the medical personnel at the ER focused on his knee, also. He was given a prescript for Vicodin, which made him sleep all the time, and surly.
At the third visit, we got a doctor who knew what he was doing. "It's bulging discs in your spine," he told him.
So he's now on Tramadol and seeing a specialist, who, God help us,. will no doubt order another MRI when we visit his office tomorrow. It seems each doctor wants his "own" test results, and this orthopedist seemed to think it's something other than disc problems, perhaps a pinched nerve.
Meanwhile, I am coping as best as I can, hoping to stave off a visit from my own medical nightmare, Lupus. I've been getting as much rest as I can, between fetching and carrying, and the house shows it. I'm fretting over the state of the house -- needs a good cleaning, but I can no longer do anything more than light housekeeping, and I sure can't afford a cleaning service.
I'm having overnight company on June 8th, before I go to OK for my high school reunion.
This is MY goal. I can't make my son's goal for him; that's between him and his doctor.
I'm so glad I know this. While I am concerned for my son's health, I am also remembering that if I'm knocked flat by a lupus flare, I'm no good to anybody.
So, lessons learned the hard way.....Take care of yourself. There's only so much a person can do.
My friend just might have to arrive to a house in disarray. And that's okay. I know she's not coming to see how I keep house, but coming to see ME. An old high school friend.
My job today is to just breathe.......

Lupus

And Another Eye Doctor Appointment....

2011-04-19T09:46:00.000-07:00

It took about an hour to get into the exam room, have the tests done and then leave the facility yesterday, stunned at the information I need to remember. Fortunately, the technician handed me some written instructions for the day of the first surgery, scheduled for 6 AM on Tuesday, 26th. I'll be in a "twilight sleep" and can wear my own clothes, is the best of the information I absorbed. Fortunately, my son was with me, the voice of reason, he is, and he asked the pithy questions, mostly about "How Much" will all this cost?
We thought we knew, but we didn't count on getting prescription eye drops for pre-op and post-op use. So we went to our friendly neighborhood Walgreen's and asked the clerk to see how much this will set me back.
Heh. Too much. Over $160.00 in copays for three kinds of eye drops. The only good news is, I can use them for both surgeries. Big deal.
So I'm calling the dr's office to beg for samples. The tech implied that she might be able to get me some samples. I called the office yesterday and left a message for her to call back, but you all know it's the squeaky wheel that gets the grease.
I'm kind of bummed about the whole thing. One is the cost, of course. Another is believing that I'm really getting old.....which I am....and a third is, I don't do well with any kind of sedative. I tend to throw up. A lot.
Oh, and my blood pressure was really LOW. It is normally 120/80, but yesterday it was 90/60. Should I be concerned? The tech didn't say much, except that my heart rate was high. Can you say, "Anxiety?"
Oh, and btw, I asked the tech about the "wrinkle" on the retina on my left eye. Asked her if the doctor could fix it in this surgery.....
Heh. Of course not. I'll have to be referred to "a retina guy."
Trying not to cross that bridge before I come to it......
Who has more fun than a Lupie?

Lupus

More with the Eyes

2011-04-13T07:49:00.000-07:00

Well, thanks to the Lovely Lady Lupe, I now have cataracts that need to be removed. Partially due to all the prednisone and Plaquenil I've had to take thru the years. Of course, I tell myself it has nothing to do with my age, which is getting right up there to the mid-70s. In fact, I have a birthday on Thursday, 21st. But all things considered, I'd rather have that birthday than not. Problem is, with my cataract surgery, I don't have the $$$ available, and they don't take American Express, which is my credit card. My only credit card. So what to do? I can postpone the surgeries and save up, which would take me until oh, April of 2020, maybe. I wonder what people do who can't afford this surgery and absolutely have to have it? I'm not too proud to look for alternatives in funding. Other than my grown kids, who have enough on their plates without taking on Mom's eye care. My daughter in CA has agreed to help me with my dental bills, which thanks to Sjogren's, are considerable, and my teeth really need to be cleaned and a cap put on one of my front teeth that is cracked, vertically. I told her if it cracks any more, I'll end up looking like a hillbilly with an IQ of 50. But back to the eye problems. I have a couple of days before I have to call and postpone, and my son is working hard to see how we can afford this.... I'm well aware that I have no money sense whatsoever, as my kids have been pointing out for years.... I tell them I'm an artiste, not an accountant. I have a day or two before we have to call and postpone, so we can "explore our options." Meaning, do we eat, or do we put gas in the cars, or have the eye surgery? It's about that bad, folks. I never thought I would be one of those Senior Citizens who would have to choose between groceries or medications, but I'm there. I need to order more Humalog and Lantus, and even with my co-pay, it's expensive. I get the Humalog via Canadian meds, so I save a bit there. Okay, enough of this. Everybody has problems. So far, I have a roof over my head, groceries in the pantry and fridge, enough gas in the car to get me to my doctor's appt. this afternoon (unrelated to this cataract thingy) and all is well, today. Wish me luck. Lupus

Eyes Again....

2011-03-09T09:11:00.000-08:00

For about a month, I experienced daily auras in each eye (they took turns) and developed a twitching of my left eyelid. Constant. Daily.

So I had made an appointment with a neurologist to see what was going on.

And then the symptoms stopped. No more eye blinking, no more auras.

So for that I was glad. Didn't need the hassle of yet another referral to yet another doctor.

Until.....this week. They're baaaaaack.

Concensus among the Lupies yahoo group is the aura is probably caused by a migraine (painless) caused by stress, and they're probably right. I had been to Wal-mart to pick up a prescription and they had ONE person at the prescription counter. I waited 30 minutes in the drive through until I decided to hike into the facility and get my refill in person. And there was a line of six people. So I just sidled up to the person behind the sign that said "Consultation" and I said, as clearly and calmly as I could, "I know this is not your job. But I have been waiting for 30 minutes in the drive-through lane, and I would like to pick up my prescription NOW."

And she dropped what she was doing and went over to where the refills were stored and returned with my prescription. I thanked her as civilly as I could and returned home.

It was about thirty minutes later that my right eye developed the aura that was intense but beautiful(!) and it lasted for about half an hour.

Just the same amount of time I boiled over not getting my refill picked up.....

And as soon as the aura faded, my eyelid began to twitch.

Stress, huh? Just what I don't need.....

Lupus

The More I Learn, The Less I Know....

2011-03-01T09:34:00.000-08:00

Life as a Lupie isn't easy. I'm fairly acquainted with most of the symptoms and medications used to treat this condition, but every once in a while, I'm kind of blindsided by another new symptom that reminds me that Lupus is Still Here.

This morning, after I finished taking my handful of necessary meds, I felt a strange tingling, then a feeling of numbness along my left leg, my left arm and hand.

OMG, I'm having a stroke, was my first thought. Yep, always go to the Worst Case Scenario, and then the REAL explanation won't seem nearly so bad. Right?

I then went to my computer to check my emails, and sure enough, there's an email from a fellow Lupie on the board, telling me about peripheral neuropathy.

Now, I have peripheral neuropathy in my feet, since I'm also a Type ! diabetic, so I'm acquainted wiith the feeling of pain/numbness/tingling if I don't take the Flexeril for a day or two. Of all my meds that I refill faithfully, this is the top one. I can do without the Plaquenil for a day, or the high blood pressure med, even, for a night, but oh, I can't do without the Flexeril.

I had tried Neurontin and had an adverse reaction after two weeks. I won't go into details, aren't you glad -- because I think I've already blogged about it earlier. Anyway, I told my rheumy of that awful experience, so we brainstormed on what type of med I could tolerate, and landed on good old Flexeril, which I had taken a long time ago.

So, long story short, now I know, thanks to the online support groups called LUPIES, a yahoo group, I have the information I needed to deal with this latest odd syndrome.

If you're reading this, and are not in a support group, go online to LUPIES@yahoogroups.com . You'll find answers to your questions and a whole lot of understanding.

Lupus

Again....

2011-02-05T08:45:00.000-08:00

The bronchitis that I had a couple of weeks ago has returned. With a vengeance. I called to get my prescription for Zpak refilled, and had to go thru the doctor on call, since my PCP's office was closed. Due to the snow and ice in the DFW area.

Can't say I blame them. I haven't been anywhere since Tuesday morning, when we got the first blow of a vicious winter storm. Ours took the form of high winds, thunder and lightning, drenching rain, and then -- omg, sleet and freezing rain. Nobody was going anywhere on Tuesday morning. Or Wednesday. Or Thursday. Or Friday.

Today, I see some thawing on the roofs; the sun is out. When it reaches above freezing, I'm going to the pharmacy to pick up my prescription and other medical necessities. They tell us this respite won't last too long; we're supposed to get more snow tomorrow -- Super Bowl Sunday, and then on Wednesday, we'll have another Super Storm blow through.

I'm wondering if my poor lupie body is reacting to barometric changes? I ache all over. And my ribs occasionally scream at me -- possibly an inflammation of the rib cartilage.

In the life of a lupie, it's always something. I'm just grateful things aren't any worse.

Lupus

Bronchitis.....

2011-01-28T09:31:00.000-08:00

I started coughing right after Christmas, and it got progressively worse. Of course, I had been in my PCP's office the day before on another matter, so I just called her office and asked her nurse what I could do about this awful congestion. Her answer was: Mucinex DM, every 12 hours for 7 days.

I'll tell you, that stuff really works. My hacking and whooping went into mere coughs and sneezes in a week. Fine, I thought.

Heh. I forgot Lupus has her own rules. Just when you think you have a health problem whipped, she raises her ugly head. The cough and congestion came back. With a vengeance. This one was worse. I kept pouring the Mucinex DM religiously; my son joined me doing the same. Our house sounded like a tuberculosis sanitorium. (You young 'uns probably don't know about that....don't know if they even segregate tb patients anymore.)

So I toughed it out for another 10 days, dragging myself around, until I began running a fever. That's it. I'm in trouble when I run anything over 98.6. I mean, anything over 98.6. My "normal" temp is around 97.0 so if I'm a bit over that, it's a fever.

I called my doctor and got in two days later.

She checked me over, asked some pertinent questions, and then announced, "You've got bronchitis."

No surprise there. One of my earliest memories is of being in bed with a sheet "tented" over me, with warm steam directed at me. I had bronchitis every winter until i was about 12, when I skipped one winter with that little condition, and I was declared "over it."

Until I got lupus, that is. I'm hit in my lungs or pleura or bronchial tubes every time I have a flare. So when I began running a fever, I hauled a** to the doctor's office.

She prescribed a Z Pak and within 5 days, I was doing soooo much better.

I still feel kind of shaky, but that's better than hacking up a lung every five minutes.

And I've got a big supply of Mucinex DM on hand, just in case.....Winter isn't over yet, ya know.

Lupus

Thyroid?

2010-11-13T12:27:00.000-08:00

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.

Lupus

Cognitive Issues -- Or Old Age?

2010-11-11T08:30:00.000-08:00

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.)

Lupus

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

2010-11-02T12:25:00.000-07:00

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?

Right.
Lupus

I Was Asled to Share This.....

2010-11-01T12:49:00.000-07:00

ROMANTIC COMEDY LOVE SIMPLE TO DONATE 10% OF DVD PROCEEDS TO LUPUS RESEARCH INSTITUTE

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: amazon.com, bn.com (Barnes and Noble), target.com, bestbuy.com and walmart.com.

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

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, www.geekypleasures.com

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

"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." www.cureforlupus.org

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

"I absolutely loved the film!" Matthew Sapp, editor, mattandlupus.blogspot.com

"The producers and directors did a GREAT JOB!!!!!" Jennifer Morrison, editor, lupuseveryday.blogspot.com
###

Lupus

To Fly or Not to Fly.....

2010-10-28T11:17:00.000-07:00

I'm in a quandary. As usual. I'm faced with the prospect of flying to Phoenix, AZ to do a radio program promoting my newest book, Once a Brat, Always a Brat. It should be released any day, now, and coincidentally, BratCon Radio contacted me about coming out to give away six signed copies to call-ins. Not only for this book, but its companion novel, The Women of Camp Sobingo.
So why am I posting this news on my Lupus Blog? Well, I'm sure I'm having a bit of a flare right now. Who know what shape I'll be in on Nov. 17th, the day I'm flying out of DFW for Phoenix. I ache all over, as I usually do when flaring; I'm worried about the nosebleeds returning; my vision gets double on occasion; and my balance leaves a lot to be desired, since I'm kind of dizzy occasionally. I went to my office chair, preparing to slide into it, and nearly ended up on the floor. The desk chair swivels, ha ha. My head knew that, but my body forgot, so I stumbled a bit and fortunately recovered myself before I went splat on the floor. I did spill my insulated cup of ginger ale all over the desk; fortunately, none of it touched the laptop.
So no wonder I'm a bit apprehensive about going off somewhere and adding more stress to my life. I could have said NO. But I'm a writer, you see, and part of the writing experience is making public appearances, radio and tv shows, etc.
And admit it: It's an ego trip, to think that somebody WANTS you to talk about your work, and is willing to pay expenses for this unknown writer to add to his radio show. How could I not go?
I thought about contacting the Phoenix chapter of the Lupus Foundation of America, and I might still do that. But I already contacted a fellow Military Brat who used to live in this area, but who has moved to Phoenix. She says she'll be glad to hang out with me, and introduce me to her husband. This will no doubt remove any pre-show jitters so I'll be reasonably coherent when the red light goes on and we begin to air.
So, fellow lupies..... am I being too risky? Would you do it? I think I'm able to handle this flare, and maybe even recover from it before I board the plane, but I've been wrong before. In fact, I feel so bold at this point that I've signed on with a speaker's bureau which will involve out-of town travel. Must be the Military Brat in me, heh.
Okay, so far in this blog I've managed to write not only about lupus, but also about my newest book about Military Brats and my novel, which should have gone on other blogs. But it all intertwines,somehow.
Life is like that. Especially when you're a writer who has lupus and is a Military Brat and is learning the promotion business, too.
Yep, I'm going. Wish me luck.

Lupus

New symptoms?

2010-10-25T12:00:00.000-07:00

Okay, I posted the other day about my trip to the ER because of nosebleeds. Heh. I KNOW what to do to STOP nosebleeds; what I want is WHY DO I HAVE THEM, ANYWAY?
The teenage ENT doctor removed the packing, five days after the ER doc inserted it into my right nostril, and he told me the same thing....how to stop a nosebleed. Well, I really got annoyed that he probably hadn't even looked at the 4 pages of information I had filled out while waiting for him. My entire medical history, and that of most of my ancestors, too.
So he had no idea that I am a lupus patient, and wanted to know WHY I had nosebleeds in the first place. And, why didn't I just ask him? Heh again. He was in and out in a flash, and his demeanor suggested to me that he didn't want to talk to me other than tell me the ways to stop nosebleeds. Sigh.
He probably wouldn't have known, anyway. That's my rheumatologist's area of expertise. I think. Anyway, I have had so many weird symptoms lately that I've made an appointment with a neurologist. This was at the urging of my fellow LUPIES on the yahoo group of the same name. If you're not in that group, join. I get more information from this group of (mostly) women than I ever have had from a rheumy. If my lab tests "look good" to him, then I'm not experiencing a flare, I think his opinion must be.
However, when I go to see him on Nov. 11th, I'll certainly tell him of the latest round of strange events going on in my pain-wracked body. (My knees are hurting today; humid weather does that to my joints.)
Okay, besides the nosebleeds, which my LUPIES bunch told me is a sign of a flare, AND it could be neurological. This along with:
1. eyelid twitching --- nearly all day, nearly every day. For a while, I was spared that annoying symptom, but the nosebleed issue took its place, I think.
2. My painless migraines, or optical migraines, where I get a nice "halo" effect in one of my eyes. No headache, no uopset stomach or aversions to light or noise, just the aura. This could be dry eyes due to Sjogren's, and I use eye drops at least twice a day (even though I think I'm supposed to use them 4 times a day, but I doubt they would help, either.
3. Episodes of being dizzy, like I'm spinning, even when I'm seated. Scary to think I might faint, but I don't. And it goes away in a few seconds, but what if it happens when I'm driving? My eyes kind of hurt, or go out of focus a bit, like I'm going to have double vision any minute.
4. The nosebleeds were not just ordinary red spots that oozed from my nose....Nosireee, what I saw on the tissue was dark red, big chunks of blood, and that's scary. Trying to hold your nostrils shut is a daunting challenge, knowing that something very strange is going on. Sure, it finally stops,but a few minutes or a few hours pass, and there it is again.
To add insult to injury, I read on the Internet about nosebleeds that they're common to "elderly" persons. Elderly? Me? Well, yeah, I'm 72, but how old do you have to be to be classified as "elderly?" Probably 10 years older than I am, I pout.
So what to do? Just keep marking down my vague symptoms, wondering if these are anything significant to a lupus person, as in a flare?
I do know one thing....I'm keeping the appointment with the neurologist.

What to Wear to the ER

2010-10-18T10:18:00.000-07:00

Inquiring minds want to know. What do you do when you have to make a mad dash to the ER? After all, you've followed your mother's dictum from when you were a kid: "Always wear clean underwear in case you have to go to the Emergency Room."
To that universal admonition, I'll add another: "And be sure your bra straps don't have safety pins."
Okay, so Friday, I was dressed in clean underwear and no safety pins in my bra, when I encountered yet another nosebleed. This had been happening since Wednesday afternoon, off and on.
I called my doctor's office,not so much to find out how to stop the gusher, I was doing very well at stopping the flow, thank you very much,but I wanted to know how to prevent them from happening. Doctor's office was so backed up the answering service answered. I wanted to talk to my doctor NOW. Couldn't help me, there. So I held on while I had a bloody tissue to my nose, and when the receptionist finally answered, I blurted it out: "I have been having nosebleeds for a couple of days. Can I come in and see the doctor?" She didn't hesitate. "Go to the ER right away."
Okay, I'll do that. But first, I looked at what I was wearing: mismatched top and pants. I love the pants; they're cool and comfy, but the mismatched top had to go. I rummaged around in my closet and found a top that was in the same color chart and put it on.
Then I got my son to take me to the ER.
After all, I didn't want to be talked about later...."Did you see what she had on?"
"Well, no. But did she have on clean underwear and no pins in her bra?"
"Yeah."
"Then that's okay."
So they tell me.
What the heck did they do in the ER, you ask? Well, first the doctor gave me a nasal spray cause he thought my nasal passages were dry. I waited a while for him to dismiss me, and sure enough, SPURT. more blood gushing. Son summoned the ER doc, who said, "Okay, it's a good thing you hadn't left yet, right?" I nodded while holding a gauze pad on my nose.
"We'll put a balloon up your nose," he said. HUH? Then he showed me what looked like, essentially, a tampon, with a tube at the end that would remain outside my nostril. Then he proceeds to put it way up into my right nostril, to the point where I'm almost groaning and wincing. "Now, we leave this in for a few days and it will form a clot. An ENT doctor will have to remove it and then cauterize the wound."
I then got a referral to an ENT doctor, a prescription for antibiotics, and I was dismissed.
I have become a mouth-breather. I don't like that at all. But it's coming out tomorrow, thank God.
So why the nosebleeds? Best guess amongst my lupus support group is that I'm having a flare, with neurological involvement. Oh, fine.
I have been having some double vision, eyelid twitching constantly, and a tingling on my right hand, near my pinkie finger. I have an appointment with a neurologist for Dec. 2nd, thank goodness.
Then again, it might just be "common for the elderly."
But this elderly person was at least dressed for the occasion.

Lupus

Too Many Moving Parts....

2010-08-19T10:56:00.001-07:00

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.....:)

<Lupus

A High Maintenance Woman

2010-06-27T11:28:00.000-07:00

I'll admit it. I am one of those High Maintenance Women. Not so much in my demands for attention, or "the finer things of life" like jewelry, furs and expensive cars. No, my tastes are much more simple than that.

I'm referring to high maintenance as affording the many prescriptions I have to have every day. These are not frivolous "recreational drugs" or sexual enhancement products. These are life-sustaining and pain-reducing prescriptions used to keep lupus in remission and keep me out of all kinds of pain. '

I've been on many more medications in the past than the few I have right now. At that, it's an expensive pharmacy bill every month, just for Plaquenil, Furosimide, Rampiril and thyroid medication. Cymbalta for depression and fibromyalgia and flexeril to sleep. Plus over-the-counter Vitamin D and B-12. Not to mention my diabetes prescriptions: Humalog and Lantus. And the paraphernalia with which to use those meds: Diabetes testing strips, monitor, lancets and syringes. Each test strip is approximately $1.00, so I have to be careful with them and make sure I pull up enough blood on my finger so it will register on the test strip instead of giving me an error message. And I test 3-4 times a day, and inject insulin many of those times, plus 50 units of lantus at night. Neither humalog nor lantus is cheap, by any means.

I can't skip my thyroid med; I don't have a thyroid any more, since it was dissolved many years ago after a bout with hyperthyroidism. I can't do without my Plaquenil, since it seems to be doing its job of keeping lupus in remission, or at least, not in a really bad flare. I certainly need Cymbalta, having tried several types of antidepressants, and lucky me, I respond only to the certain combination used in Cymbalta. I'm soooo special.

Along with my lupus meds, I need to use a tartar-control toothpaste, available only from my dentist, since I also deal with Sjogren's Syndrome. My mouth is constantly dry, as are my eyes. Oh, yeah, I forgot eye drops, 4 times a day. Not prescription, but I'm sure that's coming.

So that's what I mean about being a high-maintenance woman.

Any prospective husband should know this from the get-go. (As if they were standing in line to meet me, lol.)

But, I'm worth it.

And I'm modest, too.

<Lupus

Men Have Lupus, Too.

2010-06-23T10:07:00.001-07:00

Poor guys. I give them short shrift, when I write about SLE. Using the female pronouns "she" and "her" I forget that men can also suffer from this disease.
And, Lord help me for making this comment, it's been my experience in seeing male lupus patients, they REALLY get it bad. Why is this?
I have personally known two men who have lupus, and they both are not doing well at the moment. Let me tell you about one of them: "Joe" came in from playing golf one day, sunburned as a lobster. He soon began to exhibit symptoms that sent him to the emergency room. Barely lucid, he answered their questions and he was admitted. Test after test, all the while he was suffering from severe sunburn, itching and a general feeling of overwhelming fatigue.
He was lucky. He was diagnosed while still in the hospital as having SLE -- Lupus. Treatment started immediately. Even so, he lost his job because he couldn't function physically or mentally. He's not the same man he used to be. His wife is at a loss as to how her husband could go out one day fully healthy and a week later be incapacitated.
Now maybe he had exhibited some symptoms before that incident. Maybe he hadn't felt fully well for a while, with some aches and pains, but had brushed them off, as most of us would do. Loathe to go to the doctor, he pushed everything away, until his body broke down.
I'm not saying the outcome would have been any different had he gone to the doctor for tests for his somewhat vague symptoms. But I'm betting that he, being of the male persuasion, would have received more rigorous, more serious investigation and probably diagnosed sooner. Then he might not have gone out in the blazing sun to play a round of golf.
I'm just sayin'......
I'll try to keep in mind this isn't JUST a woman's disease.

<Lupus

How to Help a Lupie

2010-06-15T10:00:00.000-07:00

One of the obstacles we who have lupus have to overcome is doubt. Not only self-doubt, such as: Do I really have lupus? Will I never get better? How am I supposed to raise my family when I'm so tired? but also family and friends who doubt the validity of our claims that we are, indeed, sick.
"But you don't look sick" is a phrase we hear many times. No doubt meant to cheer us up, instead it sets us up for more doubts. The person I'm married to doesn't believe me; my friend thinks I'm pretending to have this disease; my kids don't understand why I can't sit in the bleachers for their baseball games....and on and on.
So, if you are a friend or relative or a loved one of a lupie, let me set out some suggestions:

1. Hard as it is, accept the diagnosis. Or the non-diagnosis, as the case may be. Many times, we who do have this illness don't have a "real" diagnosis from a doctor. Just a vague, mixed-connective tissue disorder, or fibromyalgia, or chronic fatigue syndrome, and on and on with non-specific words written in a chart, and the patient is left believing she is imagining things. Being a hypochondriac. Wanting to get out of hard work either at the office or at home. Looking for sympathy. I will tell you that the last, looking for sympathy, is almost correct, but I'd change the word to "empathy."
Think about the last time you had the flu. You ached all over. Your body screamed at you every time you moved. You could hardly get out of bed, let alone dress and go to the office. This is similar to what a lupie feels every day. Really. Hurting, fatigued even after sleeping all night, your loved one claims she can hardly get around the house without hurting, or her fatigue level is such that it takes every effort she has just to get out of bed. Believe her. She really doesn't want to feel this way. But she does.

2. Pull up the slack a bit, if you can. If the house is cluttered with the kids toys, either pick them up yourself or get the kids to do it. I know, I know, you're the man of the house, and it's not your job to pick up toys, or wash the dishes, or put a load of clothes in the washer. Your wife would do them if she only could, and it hurts her to ask for help, or when she tries to do it herself, she hurts even more. So ask what you can do to help.

3. Don't try to "fix" a lupie. We have heard every "cure" imaginable, and some that might actually harm us if we tried them. I had a very good friend who was determined that I should get better, so she dropped off a huge bag full of echinacea, "to boost your immune system." I had to tell her, "I can't have my immune system boosted; that's what's the problem. I have too much of an immune system." Please don't tell us of a marvelous new juice you found on a health product site, and it's guaranteed to "cure" lupus. There is no cure. Only treatment.

4. Along that line, please don't "guilt" us by telling us, "If you hadn't smoked; if you had only not used sugar substitutes like sacharin; if you hadn't stressed out so much over your divorce" you wouldn't be sick now. That doesn't help us either. Would you say the same things to a person who has cancer? No? Well, then why say it to us?

5. Forgive us if we feel good enough one day to plan for an event with you three weeks away, and when the time comes, we are flat on our backs with another lupus flare and we can't go. We can't always rely on good days. We are subject to sudden changes in our health in many different ways. And that goes for "normal" people, too, you know. Say you've planned to go to a play or concert and at the last minute, you come down with a nasty cold. Since you don't think you should cough and hack your way during the performance, you choose to stay home. We are the same way. Some days you're the bug, some days you're the windshield.

6. When you ask us how we're doing, accept the answer, no matter what it is. It could be "Fine" or "Not too good today" or "**&&^%$ are you asking me this **&&^^%$ for?" The last answer might be the most honest one, by the way, but the other more vague responses can also be how the lupie is feeling at any given moment.

This is by no means a complete list of suggestions. Think of your own ways you could give aid and comfort to this person who happens to be stricken with a case of "weird-itis." Try to keep a sense of humor about you. Name the enemy, lupus. My name for her is **&&^^%%%##@@, or "that bitch" for short.
Thank you. I feel better, now.

<Lupus

Jaw Pain

2010-06-10T12:10:00.000-07:00

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."

<Lupus

Lady GaGa and Lupus?

2010-06-02T11:04:00.001-07:00

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: http://mcmauthor.wordpress.com/welcome 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 Amazon.com: 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 Amazon.com with reviews of all my books listed there, and send copies directly to everyone you know plus your mailman, your favorite store clerk....you 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."

<Lupus

<Lady GaGa

Change in Meds....

2010-05-21T08:22:00.000-07:00

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.....

<Lupus

Fever Continues

2010-05-15T11:40:00.000-07:00

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!

<Lupus

Fever of Unknown Origin

2010-05-07T14:55:00.000-07:00

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.

<Lupus

Another Name for Lupus.....

2010-05-04T09:28:00.000-07:00

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.

<Lupus

Learning Something New Every Day....

2010-05-01T10:35:00.001-07:00

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.

<Lupus

Typos and Eyes....

2010-04-09T09:37:00.000-07:00

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.

<Lupus

They Eyes Have It

2010-04-02T09:21:00.000-07:00

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.

<Lupus

A New Insight....

2010-03-30T09:52:00.000-07:00

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.

The Never Ending Search....

2010-03-25T07:44:00.000-07:00

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.

<Lupus

New Book Coming Along Nicely....

2010-03-14T10:32:00.001-07:00

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.....

Fun With Lupus?

2009-12-30T11:19:00.000-08:00

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.

<Lupus

Christmas Tree Up....Finally

2009-12-07T18:37:00.000-08:00

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!

<Lupus

<Holidays

New Traditions

2009-11-16T08:17:00.000-08:00

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.

<Lupus

<Holidays

Been Missing in Action Here

2009-11-12T09:20:00.001-08:00

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 something.....it's still bitter.

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

<Lupus

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

2009-11-11T09:04:00.000-08:00

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 reactions...you 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.

<Lupus

Possibly a Flare?

2009-10-31T12:40:00.000-07:00

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.

<Lupus

Be a Part of My New Book!

2009-10-08T13:52:00.000-07:00

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......

<Lupus

How Weather Can Affect Us....

2009-09-22T09:51:00.001-07:00

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?

<Lupus

Contributors Adding Up.....

2009-09-22T09:40:00.001-07:00

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: lupusproject@sbcblobal.net.
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.

<Lupus

What About the Swine Flu?

2009-09-03T08:16:00.000-07:00

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 glass....no 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.

<Lupus

<Swine Flu

What's in a Name?

2009-08-31T19:28:00.000-07:00

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.

Lupian

Lupusonian

Lupusette (for a woman)

Lupusor (male)

Lupuster

SLEer

SLEver

SLEian

SLEonian

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.

<Lupus

Same Disease, Different Outcomes

2009-08-27T11:57:00.000-07:00

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.

Never Turn Your Back....

2009-08-26T16:00:00.000-07:00

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.

<Lupus

New Book Coming Up

2009-08-24T07:34:00.000-07:00

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. (PublishAmerica.com and Amazon.com) 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 marilyncmorris@sbcglobal.net

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.

<Lupus

<SLE

Auras

2009-07-30T09:30:00.000-07:00

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.

<Lupus

migraines

Good Report at Rheumatologist's

2009-07-22T19:50:00.000-07:00

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.

Lupus

Cymbalta

fibromyalgia

So Michael Jackson had Lupus.....

2009-07-09T08:36:00.000-07:00

....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.

Lupus

Michael Jackson

Pure Speculation, Here....

2009-06-26T08:33:00.000-07:00

.....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.

Lupus

Michael Jackson

Lupus and Childhood Abuse?

2009-06-06T07:43:00.000-07:00

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."

Lupus

Abuse

Medications

2009-05-12T11:53:00.000-07:00

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.

Lupus

medications

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

2009-05-04T07:38:00.000-07:00

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.

Lupus

Fibromyalgia