Thursday, July 30, 2009


I think I have found an answer to the mysterious "auras" that come upon my eyes every so often, disrupting my activities by limiting my vision somewhat in at least one eye for about 15-20 minutes.

Thank God they're not painful nor accompanied by the classic migraine symptoms. My eye doctor and my rheumatologist tend to shrug them off as "painless migraines" without providing much more information. My eyes are not being harmed in any way, it's not painful, so it's just "something that happens that's not to worry about."

That's because they're not seeing out of my eyes. I'm in the kitchen, putting dishes away, and they all of a sudden have a halo around them. Pretty colors, like a rainbow, but they're not supposed to do that. I tolerate this visual disturbance as long as I can, but figure handling sharp knives is probably hazardous to my health, so I go lie down and close my eyes until the shining lights fade away.

So I've been on several online lupus support groups, and from what I'm reading, this may be part of the lupus working on the central nervous system. It figures that every other part of my body either has been or is now being affected by this hit-and-run disease. I'm in remission, but this crazy disease doesn't know that. It still has a campfire set up in various parts of this tired old body and occasionally, it will fan the fires to let me know who's boss.

That's just what I figure is going on. Not to worry. It could be worse.

Our theme song.


Wednesday, July 22, 2009

Good Report at Rheumatologist's

I usually dread going to see the rheumatologist who treats me for SLE. Not that he's abrupt, or non-caring, or anything in his personality -- it's just going to the doctor, period.
Because each time I go into his office, no matter at what stage my lupus is in at the moment, I am once again reminded I have this mystifying disease.
My lupus is not like another person's lupus. I may suffer from RA symtoms, in my joints, while the next person's lupus affects her kidneys. Some have the discoid rash, I don't. Some can't tolerate medications used to treat lupus; I have fortunately not had that experience.
And, all the past, unsuccessful visits to five or more physicians who offered me little more than, "It's just rheumatoid arthritis," or, "Nothing is showing up in your blood work that you have lupus, so you don't have it."
Finally, this particular doctor knew what he was looking at. And he diagnosed and treated me, and today I'm in remission. In fact, he said I looked better than the last visit. Which made me wonder, "gee, I wonder how bad I looked 3 months ago."
We went over my medications, or rather, I told him what I had discontinued and what I had substituted: I d/c'd Lyrica, since it had no effect on the fibromyalgia, and substituted Cymbalta, prescribed by my -- ahem -- psychiatrist for depression AND it treats fibromyalgia, too. So he agreed, one pill for two effects is a heck of a deal. I had called my shrink telling her I didn't think the Celexa was working any more, and she suggested Cymbalta, which would also help the fibro. And after about a month, I'm feeling soooo much better, have some energy, and I don't have to take a long nap after lunch.
I told him I had d/c'd Toprol because it caused dizziness, and when he took my blood pressure, it was just fine. 120/80. I still take the Ramipril, a blood pressure med to protect my kidneys, so evidently it's sufficient by itself. One less pill.
If this type of discussion is foreign to you, I have to tell you that you have to be proactive, and not only ask your doctor for suggestions, but tell him what you think you need. You know your own body better than anyone, and your own particular "brand" of lupus.
Try it. It works. I'm sure glad I learned to do that, and I'm much better today.

Thursday, July 9, 2009

So Michael Jackson had Lupus.....

....After all, the King of Pop appeared frequently in public with an umbrella, a mask, a glove, long sleeves and long pants, and often was in a wheelchair.
Not that all lupus patients manifest these symptoms. According to reports, he suffered from the discoid type of lupus, which means it affected his skin. Those with systemic lupus have these same manifestations, and then some. And each lupus patient has his own particular set of symptoms, whether it be joint pain, rashes, kidney involvement, pleurisy, or neurological involvement.
Several of the lupus support groups I frequent have asked why on earth he didn't make his disease known to the public, so he could help publicize this puzzling illness. On the other hand, others in the groups have remarked, in no uncertain terms, "we don't want that weird-o representing us. We have a hard enough time explaining ourselves as it is."
And they may be right. Lupus-induced or not, some of his behavior can best be described as bizarre, and we certainly don't want to have that stigma attached to us as a group. Granted, we experience something called "brain fog" and sometimes our mental capacities can be diminished to the point where we become forgetful or confused, but not all of us have those experiences, either. Some of us have pleural effusion, some have kidney involvement. Some have rashes, some don't.
I never developed the butterfly rash. My presenting symptom was joint pain. I know one woman whose only sign of lupus was that her kidneys quit working. No other warnings, just one day she realized she hadn't urinated in a day or two.
No wonder people are mystified by this disease. Those of us who have it continue to be baffled by strange pains, rashes, mouth ulcers, breathing problems, neurological symptoms, and other off-beat, unusual complaints. Right now, I might be having a small flare, and I don't know how long it will last, or if it will progress to a full-blown, hospital-justified illness of unknown severity. Or it may be that I'm just feeling my age, in the Texas heat, and in general having a bad day.
I'm just glad that I don't have to feel responsible for explaining this disease to the general public. And maybe that's why MJ didn't explain his illness to anyone, either.
It's one of the hardest diseases to diagnose, treat and explain to others, even when we think we know all about it.
Lupus continues to surprise us.