Sunday, June 27, 2010

A High Maintenance Woman

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

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

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

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

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

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

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

But, I'm worth it.

And I'm modest, too.


Wednesday, June 23, 2010

Men Have Lupus, Too.

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


Tuesday, June 15, 2010

How to Help a Lupie

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

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

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

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

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

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

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

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


Thursday, June 10, 2010

Jaw Pain

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


Wednesday, June 2, 2010

Lady GaGa and Lupus?

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

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

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

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

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

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

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

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

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

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

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

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