Tuesday, March 30, 2010

A New Insight....

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.

Thursday, March 25, 2010

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.


Sunday, March 14, 2010

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.....