The Never Ending Search....

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....

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?

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

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

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

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?

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