What *really* causes lupus?

I get so tired of the medical establishment blaming everything on genetics.
when the rate of autoimmune disease in developed countries (and *only* developed countries) triples in 3 decades, we've got something other than bad genes at play here. I think they either blame genes because they just don't have a better answer, or because they are so heavily influenced by the pharmaceutical industry (who funds the medical schools, then harangues and romances them with pharmaceutical reps and fancy vacations disguised as "speaking opportunities") that they are blind to any solution that puts the power back in the hands of the patient, such as diet change, supplementation, meditation, or moderate exercise.
Well, finally there is a book out there (I wish i'de written it!) called "The Autoimmune Epidemic."
I haven't bought it yet but i fully intend to, esp. after reading this interview with the author:
http://www.endfatigue-dev.com/health_articles_f-n/Immunity-the-autoimmune_epidemic.html

what's on *your* mind?

I created a little survey for lupus patients. wanna take it?
Click Here to take survey

So what's on Your Mind (Sorry i asked)

I got an MRI a few months ago. The rheumatologist really didn't say anything about the MRI results except "you have sinusistis" (duh, i have been blowing my nose for 15 years, ever since that first spring after I started taking prednisone) and "there is a cyst on your brain." (there's always something on my mind, but not usually literally) and "see you in 3 months" (I assume that last comment meant i'd live at least another 3 months).

I think maybe she said it was nothing to worry about, but then it's not her brain, so why should she be worried? Personally, I love my brain. It is my favorite part of me. The rest of me falls apart. sometimes I look good, even great (if i do say so myself), but most of the time I don't look as good as I would have if I didn't have lupus and a bunch of drugs in my system. I'm usually frustrated with my bloating face/ ankles and my thinning/ regrowing hair, and of cousre my extra 15 pounds or so. but my brain, it always works. I have a lot of fun with my brain. i would be very lonely without it.

On the other hand, there is this musician out there who has a cancerous brain tumor and he has been touring and making a living and doing just great for *years* past his death prognosis- it's like the big scare gave him a new lease on life. hasn't affected his congnitive abilities at all.

On yet another hand (3 hands- tough time finding shirts!), my aunt just died of brain cancer and did lose some cognitive function in the last 6 months. of course that could have been the drugs.

Well, as they say in 12-step, just for today i have a brain that works and a blog and a lupus listserv to type in my stream of consciousness to, who respond back with kindness and reciprocal playfulness. if i had never had an MRI i'd have never known about the cyst. and they aren't going to do anything about it anyway. so i need to learn to just let it go i suppose.

You know if i were a saint then making fun of my cyst would be SAC-religious.

maybe i misunderstood when someone said "put a sock in it."
(oh i thought "you said put a sac in it")

I could keep up with the puns, but not everyone is so *fluid* in English.
cyst... fluid...? oh never mind.

Normally I'd make these jokes with my hubby but i don't think i want to remind him there's this "thing" in my brain. But I figure if you're reading my blog, you probably have lupus and you can handle the topic. We all feel like health time bombs at some point.

from my listserv pals:

" Carla, let us know what that means. Did
you ask

for a-cyst-ance? .Let us know what it
means. You are in my thoughts. We need you. Jesse
>>>>>>>>>>>>

Lupus envy

i've had people say all sorts of insulting things to me regarding my illness. "i wish had 6 weeks ot just lay in the bed and read."
if your life is so F***ed up that you wish you could have a stroke so you could lie around, then you need
to change your life, not take it out on someone who's already down! And for what it's worth, reading was very difficult for me right after the stroke. My eyes were doing all kinda weird stuff.

Some of my friends are on disability and anyone who knows this says things like "why don't you get a job like the rest of us?"
Humans are lazy. they would all love to get a "free check" in the mail for "doing nothing" just ask them if they want to pay the price to get that "free" check- a lifetime of avoiding the sun, in and out of hospitals and doctor's offices, huge medical bills, disfiguring medicines, and always waiting for the axe to fall, the kidneys to fail, the next stroke, the next weird symptom, the next tiem you can't enjoy going out because you're too tiered.

i lost a lot of weight in 2002 when i was very very sick. i had no butt and was aactually uncomfortable.
someone had the nerve to say "i wish i'd lose my appetite" What i wish i'd said? "i'll trade you 2
strokes, hair loss, and kidney failure for a fat ass!!!!"

When I first got sick, I had two people from the church I was going to at the time call me at different times. One of them informed me I was sick because I had some hidden sin in my life (and was being punished). A kinder soul informed me that I was sick because I was doing god's work and the devil was attacking me. Hmm. cant' be both now can it?
They were baffled that someone like me, who showed up to church 3 times a week, could ahve something so awful happen to them. I realized later they were saying these awful things because they wanted to somehow blame me for my illness- if somehow it was my own fault, then they could believe it wouldn't happen to them. Same stuff they do when a girl gets raped and they say she was "asking for it" because she had on a short skirt. Once I realized it was fear, not meanness, driving these people to say awful things, I could forgive them.

Other folks from the church were all pitching in to help this woman who was bedridden (pregnant, doctor's orders) and bringing her dinner every night (she had a husband. Meanwhile I was debilitated and almost no one came around.
Later, after I got back on my feet (and moved away, and left the church, which I hope I'd have had the good sense to do even if I hadn't moved away), I finally called one of the main church guys and asked them why they refused to help me when I was sick, but helped others. He said "You're still upset about that?" Of course i was- no one had acknowledged the hurt or even considered apologizing or explaining. He said "Well we figured you were doing that 'wacky' medicine." So I said "you mean you didn't approve of the medical treatment I was getting so you decided not to help me." He says "Well i wouldn't put that way." And I said "I'm sure you wouldn't!" Because that would make you despicable!

find some real-life face to face friends who aren't crazymakers, takers, blamers, haters. seek them out. They may not all be in the church... but they are out there. i found some for the first time in my life after my 2nd flare. this whole thing has been
a lesson for me in caring for myself.

love yourself and others will follow suit (or get left behind!)

My disease is worse than your disease

People around you, when you have a chronic illness, don't understand when you can't go to social outings 3 times a week because it's too tiring, or other things you have to opt out of, even though you would love to do them. the weird thing is, those of us with lupus don't even fully know our own limitations, because i don't know about everyone else, but mine change all the time. so maybe what i could do last time someone saw me, I can't do this time.

I've heard horror stories about husbands who are just monstrous when their wives develop lupus. One of them actually went to the doctor and asked to be tested for lupus himself. Another is a "recovering" addict who needs knee surgery and takes all his wife's pain meds, leaving her with none to manage her lupus pain! my husband is awesome, and i feel so lucky to have found someone who really loves me despite this stupid illness. we're newlyweds, BTW, 9 months now, so you *can* find love after lupus. i didn't think it was possible.

the one thing he doesn't understand is how loud noises and bright lights and other forms of overstimulation are upsetting to me and always lead to a migraine. i have to keep telling him to talk quieter. it's like i have a perpetual hangover! no one can ever really "get it" no matter how wonderful a human being they may be, unless they have suffered something very very similar for a long enough time that they don't forget what it is like. in other cultures, BTW, you cannot be a healer unless you have suffered. very different from our medical system, which is seriously lacking in empathy and compassion. but i suppose that's another story. sort of. i mean they can be really invalidating too. i had a doctor tell me once "it could be worse. you could have cancer."

I snapped. I said well at least if you have cancer you either get better or die! (as opposed to draggin around feeling like crap and popping pills for decades!). He caught me at my wit's end- what can i say. But i don't regret it one iota. Not because I think lupus is worse than cancer or cancer is worse than lupus, but i just think it's *so* wrong to play the "who's got it worse?" game. I don't think he could have picked a worse thing to say. He's lucky I'm too weak to strangle anyone.

Something from the bible that has stuck with me: “it is not wise to compare amongst yourselves.” For example, lupus can be much worse or much less severe than breast cancer. some cancer patients just have a lumpectomy; others have it travel to their lymph system and die a painful death. Some lupus patients have mild fatigue and rashes while others, like me, suffer kidney failure, migraines, pleurisy, high blood pressure, anemia, congestive heart failure, even a stroke during a flare- it can still be a deadly disease, and most who die from lupus die of heart failure. And getting lupus doesn't exclude you from getting cancer, or vice versa. I've met folks who have had both.

So, in getting out of the pity party and competition frames of mind, I think that gratitude is definitely a very powerful choice. when I am feeling really stinky sorry for myself because I can't do the things I'd like to and no one understands and this stupid thing is probably never going to go away (notice I said "probably" even after 16 years of this, I still have hope!) I make a gratitude list. it’s a real pick-me-upper!