....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.
Lupus
Michael Jackson
Thursday, July 9, 2009
Friday, June 26, 2009
Pure Speculation, Here....
.....but I'm wondering if Michael Jackson had lupus? Think about it.....those who have lupus try to stay out of the sun (MJ carrying an umbrella, all covered up with long sleeves, etc.); skin changes occur (recently he was seen with some "marks" on his skin; and I don't know if this is true or not, but I've read somebody who stated he had been receiving dialysis (kidney troubles?) Plus, whether or not the painkillers "did him in", he had evidently been in a great deal of pain most of his life and become dependent on several pain-killing drugs. Recently seen in a wheelchair.
Sounds like lupus to me. Despite the protests that he evidently underwent, and passed, a rigorous physical exam for more insurance coverage, I believe he could have done that, on a good day. Those who know lupus patients, know that we have our good days and our bad days. And, when hard pressed to "perform" such as passing a physical exam, we can gather our strength and do whatever is necessary.
So now we're waiting on the autopsy report. It will probably take several days, if not weeks, for the definitive cause of death to be determined. This much we know.....he was taking painkillers. Whether they were too many, combined, or an overdose of one particular drug (Demerol has been suggested) we "lupuies" know how easily that can occur.
If it is lupus that killed him, I'm really gonna be ticked off at him and those around him.....Because he could have become a spokesperson for our disease and helped fund research efforts for a cure and/or better treatment for this aut0-immune disease.
So why the secrecy? Was this deliberate or just another of his "quirks" that he didn't want the public to know too much about him?
Okay, let's look first at the stigma of having an auto-immune disease. Hmmm. Sounds like AIDS? That's the first comparison the average joe comes up with. Well, yes and no. In AIDS, the person has no immune system. In Lupus, the person has an immune system that is so much in overdrive that it attacks organs of the body, mistaking them for a foreign object.
Second, if it is Lupus, more people of color contract this disease than other ethnicities. Knowing his propensity for denying his race (pure speculation on my part, remember?) by trying to look "white", he might have been ashamed of having a disease that so stereotypes a race.
Third, if it is Lupus, he might have denied it even to himself, giving only lip service to his doctors' treatment and instructions and not getting enough rest and avoiding stress if possible. After all, THE Pop Icon of all time can't possibly have a disease, can he?
And lastly, I have to tell you that if indeed he had lupus and denied it, I will really be ticked off that he didn't help himself or others by publicizing his struggles with this disease. In the instance of Farrah Fawcett's death, I applaud her for facing cancer head-on and talking about it, even to the point of having her struggles put on film for others to gain strength from. Not so if MJ died from lupus or complications of lupus, as it may be.
What a loss, not only of an icon, but of an opportunity to inform, encourage and help with research into why lupus is such a cunning, baffling and powerful disease.
I hope I'm wrong.
Lupus
Michael Jackson
Sounds like lupus to me. Despite the protests that he evidently underwent, and passed, a rigorous physical exam for more insurance coverage, I believe he could have done that, on a good day. Those who know lupus patients, know that we have our good days and our bad days. And, when hard pressed to "perform" such as passing a physical exam, we can gather our strength and do whatever is necessary.
So now we're waiting on the autopsy report. It will probably take several days, if not weeks, for the definitive cause of death to be determined. This much we know.....he was taking painkillers. Whether they were too many, combined, or an overdose of one particular drug (Demerol has been suggested) we "lupuies" know how easily that can occur.
If it is lupus that killed him, I'm really gonna be ticked off at him and those around him.....Because he could have become a spokesperson for our disease and helped fund research efforts for a cure and/or better treatment for this aut0-immune disease.
So why the secrecy? Was this deliberate or just another of his "quirks" that he didn't want the public to know too much about him?
Okay, let's look first at the stigma of having an auto-immune disease. Hmmm. Sounds like AIDS? That's the first comparison the average joe comes up with. Well, yes and no. In AIDS, the person has no immune system. In Lupus, the person has an immune system that is so much in overdrive that it attacks organs of the body, mistaking them for a foreign object.
Second, if it is Lupus, more people of color contract this disease than other ethnicities. Knowing his propensity for denying his race (pure speculation on my part, remember?) by trying to look "white", he might have been ashamed of having a disease that so stereotypes a race.
Third, if it is Lupus, he might have denied it even to himself, giving only lip service to his doctors' treatment and instructions and not getting enough rest and avoiding stress if possible. After all, THE Pop Icon of all time can't possibly have a disease, can he?
And lastly, I have to tell you that if indeed he had lupus and denied it, I will really be ticked off that he didn't help himself or others by publicizing his struggles with this disease. In the instance of Farrah Fawcett's death, I applaud her for facing cancer head-on and talking about it, even to the point of having her struggles put on film for others to gain strength from. Not so if MJ died from lupus or complications of lupus, as it may be.
What a loss, not only of an icon, but of an opportunity to inform, encourage and help with research into why lupus is such a cunning, baffling and powerful disease.
I hope I'm wrong.
Lupus
Michael Jackson
Saturday, June 6, 2009
Lupus and Childhood Abuse?
I've been reading messages on an online lupus support group where the question was raised that possibly some of us suffered some kind of abuse, thus leading to such stress that it led to developing lupus.
Although I didn't experience any kind of abuse in my childhood, it dawned on me that since so many of us with lupus live with or were raised by dysfunctional family members, we should all probably join one of the 12 Step Programs.... Like AlAnon (which I "are" one, having been married to two alcoholics) or Adult Children of Alcoholics (ACOA) which teaches you how to deal with people who manipulate, deny and mentally or physically abuse you through alcohol or drug abuse, and I think we could include family members who are in denial about our pain and our disease.
See, family members who deny our disease are probably (1) too scared to deal with it, thinking we're going to die at any minute, and then what would they do? or (2) too damn enmeshed in their own perceived "right" worlds where disease doesn't exist and God heals everything "if only we got right with God."
Like blaming a cancer patient for getting cancer -- "Well, he shouldn't have smoked....she shouldn't have eaten all that fatty food.....he shouldn't have ingested any aspertame... ...only angry people get cancer because they repress it......he got cancer because he abandoned God and now he's being punished.... " I've heard all that. I've had people tell me that if only I "got right with God" I'd be healed.
I'm not negating the healing effects of prayer, and in fact, I've been to a couple of "healing services" one of which,about a week afterwards, I threw away my cane since I wasn't dealing with falling down from vasculitis in my ankles. One was a fundamentalist church service and one was a Catholic healer, and I got relief from both, even though I went with skepticism and came out kind of wondering what the heck just happened? I developed an answer for those who insist that only God can help me -- their God, btw -- and I smile and say Thank you, I appreciate your help. Oh, and this Episcopalian attended a healing service at her own church and can't help but think it led to my feeling better, if only a little bit.
But a 12 Step Program such as above couldn't hurt, either. We learn to deal with people who attempt to manipulate us, in one way or another, or who cause us even more pain than the physical pain we are in. Look 'em up in the local phone book. They're there for you, just like we're here for each other. Heck, they might even be online; I haven't checked! Meanwhile, "Don't let the bastards wear you down."
Lupus
Abuse
Although I didn't experience any kind of abuse in my childhood, it dawned on me that since so many of us with lupus live with or were raised by dysfunctional family members, we should all probably join one of the 12 Step Programs.... Like AlAnon (which I "are" one, having been married to two alcoholics) or Adult Children of Alcoholics (ACOA) which teaches you how to deal with people who manipulate, deny and mentally or physically abuse you through alcohol or drug abuse, and I think we could include family members who are in denial about our pain and our disease.
See, family members who deny our disease are probably (1) too scared to deal with it, thinking we're going to die at any minute, and then what would they do? or (2) too damn enmeshed in their own perceived "right" worlds where disease doesn't exist and God heals everything "if only we got right with God."
Like blaming a cancer patient for getting cancer -- "Well, he shouldn't have smoked....she shouldn't have eaten all that fatty food.....he shouldn't have ingested any aspertame... ...only angry people get cancer because they repress it......he got cancer because he abandoned God and now he's being punished.... " I've heard all that. I've had people tell me that if only I "got right with God" I'd be healed.
I'm not negating the healing effects of prayer, and in fact, I've been to a couple of "healing services" one of which,about a week afterwards, I threw away my cane since I wasn't dealing with falling down from vasculitis in my ankles. One was a fundamentalist church service and one was a Catholic healer, and I got relief from both, even though I went with skepticism and came out kind of wondering what the heck just happened? I developed an answer for those who insist that only God can help me -- their God, btw -- and I smile and say Thank you, I appreciate your help. Oh, and this Episcopalian attended a healing service at her own church and can't help but think it led to my feeling better, if only a little bit.
But a 12 Step Program such as above couldn't hurt, either. We learn to deal with people who attempt to manipulate us, in one way or another, or who cause us even more pain than the physical pain we are in. Look 'em up in the local phone book. They're there for you, just like we're here for each other. Heck, they might even be online; I haven't checked! Meanwhile, "Don't let the bastards wear you down."
Lupus
Abuse
Tuesday, May 12, 2009
Medications
I've been reading a lot about the medications some people use when they have lupus. I have by no means used them all, but several have worked for me.
First, I was prescribed Prednisone. This steroid relieves the swelling and thus the pain associated with the pain. It worked for me. The side effects, though, are not enjoyable.
First, I gained a lot of weight. I think every so often about a woman I knew who was a model, and she had gained 100 pounds and lost the life she used to lead. I almost hid from others, ashamed somehow of my modest 30 pound weight gain, and lacked the new clothes for my new, larger figure. But I should have known strangers' opinions don't matter, and my friends still love me, no matter what size label is in my clothes. And I began losing my hair. Not sure if that's from the steroids or what came next:
Cytoxan and Imuran. I had to take those meds, can't remember which one came first, because I developed vasculitis in my ankles. Couldn't walk very well. Had to wear lace-up shoes and carried a cane. Talk about embarrassing....falling down en route to a job interview and stepping out of my shoe while being dressed down in my boss-of-the-day's office. One of the meds caused me to have a taste in my mouth as if I had licked a dirty ashtray. Needless to say, I lost my appetite.
Then came Plaquenil. I took Plaquenil while I was still taking Prednisone, for three months; then the doctor weaned me off Prednisone. The Plaquenil has worked well for many years and I can live with the side effects: I have to protect my eyes and have periodic eye exams.
But it's worth it.
Lupus
medications
First, I was prescribed Prednisone. This steroid relieves the swelling and thus the pain associated with the pain. It worked for me. The side effects, though, are not enjoyable.
First, I gained a lot of weight. I think every so often about a woman I knew who was a model, and she had gained 100 pounds and lost the life she used to lead. I almost hid from others, ashamed somehow of my modest 30 pound weight gain, and lacked the new clothes for my new, larger figure. But I should have known strangers' opinions don't matter, and my friends still love me, no matter what size label is in my clothes. And I began losing my hair. Not sure if that's from the steroids or what came next:
Cytoxan and Imuran. I had to take those meds, can't remember which one came first, because I developed vasculitis in my ankles. Couldn't walk very well. Had to wear lace-up shoes and carried a cane. Talk about embarrassing....falling down en route to a job interview and stepping out of my shoe while being dressed down in my boss-of-the-day's office. One of the meds caused me to have a taste in my mouth as if I had licked a dirty ashtray. Needless to say, I lost my appetite.
Then came Plaquenil. I took Plaquenil while I was still taking Prednisone, for three months; then the doctor weaned me off Prednisone. The Plaquenil has worked well for many years and I can live with the side effects: I have to protect my eyes and have periodic eye exams.
But it's worth it.
Lupus
medications
Monday, May 4, 2009
Pain is Pain.........
I had taken this blog down a few days ago, and then realized, as I was trolling through the Internet, that some comments and references to this blog were still out there. What was I thinking? I was missing some opportunities to blog directly about lupus and share my blog posts with others.
So I took a deep breath and created this blog again, hoping I could have the same title....And yes, I can!
So what can I say today about lupus? I'm feeling more effects today from fibromyalgia than from lupus. My muscles hurt, all over. Kind of like when my joints hurt, all over, when lupus was rampant in my body. I don't know which hurts more.....but it doesnt' matter, anyway. Pain is pain. And I know it will get better. Maybe not today, but it will get better. That's what I kept telling myself -- and others -- who were experiencing pain from SLE. Take your meds, and take them regularly. Don't miss any doses of Plaquenil, or prednisone, or Imuran or Cytoxan -- whatever your rheumatologist has prescribed. A Tylenol every now and then, if it's suggested by your doctor, could also help.
In the meantime, it's a Mean Time.
Lupus
Fibromyalgia
So I took a deep breath and created this blog again, hoping I could have the same title....And yes, I can!
So what can I say today about lupus? I'm feeling more effects today from fibromyalgia than from lupus. My muscles hurt, all over. Kind of like when my joints hurt, all over, when lupus was rampant in my body. I don't know which hurts more.....but it doesnt' matter, anyway. Pain is pain. And I know it will get better. Maybe not today, but it will get better. That's what I kept telling myself -- and others -- who were experiencing pain from SLE. Take your meds, and take them regularly. Don't miss any doses of Plaquenil, or prednisone, or Imuran or Cytoxan -- whatever your rheumatologist has prescribed. A Tylenol every now and then, if it's suggested by your doctor, could also help.
In the meantime, it's a Mean Time.
Lupus
Fibromyalgia
Subscribe to:
Posts (Atom)
