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.