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."

<Lupus

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: 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....

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

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

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.....

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....

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