Sunday, November 16, 2008

Fixodent and forget it: lessons from a denture commercial

In 2002, I had a major health fiasco- and had no insurance. I had lost my insurance after being fired from my job for being sick. So I went to a teaching hospital, where they took indigent patients (indigent= no money. Not to be confused with indigenous, which is "native people," such as Aborigines or Native American Indians. Although I was born in a hospital, so I guess I was indigenous as well...)

You're not allowed to walk around much in the hospital. Which is quite torturous when you're hopped up on prednisone and want to jump out of your skin. Which, come to think of it, is probably why the windows in hospitals don't open. I entered the hospital shuffling in with a cane and left in a wheelchair. After 8 days of lying in bed, my legs were completely atrophied. Of course, this happens to astronauts too, so I was in good company.

So, after having the physical therapist put a leash around my waist and remind me how to walk for future attempts, I was wheeled out, and my follow-up appointments with the kidney doctor were set at the indigent clinic (indigent= no money. Remember the no money no insurance thing- it's key to the next part of the story). Well the clinic sees all its patients on either Tuesday or Thursday. I was a Tuesday patient, and all of us indigents had the same appointment time: 9am. And it was first-come, first served, so we all showed up at 7:30am for a 9:00am appointment. At 9am, the would start calling us to get our weight and blood pressure, then back to the waiting room, all of us with kidney failure, all of us sitting there usually until noon before being seen, with the water draining down to our ankles as our legs swelled bigger by the hour. I already had feet so swollen I could only wear slippers.

The final insult was that every time I went, I had a different doctor. So every single time, I had to give my entire medical history and re-live all the bleak dark traumatic crap I was trying so hard to not think about, like a crime victim having to testify over and over. About the 3rd time, I had had enough. I brought in a 13-page typed medical history with all my illnesses, allergies, symptoms, surgeries, corresponding dates, and the names and addresses of all the doctors I could remember. I handed it to the new doc and he said "oh, no. I have to take it orally." And I said "Why? So you can pretend to have a rapport with me?" I mean it's not like he was going to be there next month, and it's not like the next doc was going to be able to read anything he wrote on my chart. Furthermore, when you're on 9 drugs, your memory is not exactly tack-sharp.

While my Mr. one-night-stand of a doctor wasn't interested in my hours of meticulous record compilation, I did create a valuable resource that other folks do find useful, especially alternative practitioners such as acupuncturists. A lot of us with chronic illnesses do keep a health file of our own, because if you move or go to several specialists, or both (like me- although I now have insurance and get to see the same doc every appointment, I've moved a *lot*, which means changing doctors a lot)... You really have to be the keeper of your own file.

Get copies of your labs if you can, and keep them. The HIPPA laws require doctors to give you copies of your file, though they are allowed to charge up to $2/ page for them. Doctors (even those who actually do have a rapport with you) routinely throw records away after 7 years, and then they are *gone.* And that leaves you in the position of having to re-live the crime all over again in agonizing detail.

When I was 6, we moved away for one year. In our new neighborhood, we had to walk a mile each way to school and back, and again at lunchtime. Every morning, my mom made me recite our address. To this day, I remember it, in the sing-songy way I used to play it back to Mom every morning. 390 32nd street, Boulder Colorado, 80303. I was very happy in Boulder, so having that address in my head brings back nothing but sweet memories. But I have no desire to have a sing-songy list of every health problem I've ever experienced rattling around in my consciousness like an never-ending nightmare. This is the real reason I made my health file, so that, in the words of the denture adhesive "Fixodent and forget it," I can write it down, get it out of my brain, and think about something else. Like 390 32nd street.

Wednesday, November 12, 2008

Declaration of Independence

Believe me, you want to hang onto your independence as long as you can.
i have lived in my folks' house after being out on my own, and while i was grateful to not be on the street, it made me feel like a failure, not to mention the total lack of privacy.

Then, i lived with a relative who sucked the life out of me with daily 4-hour rants recounting everyone who had ever wronged them. Then i lived in a friend's computer room, and couldn't go to bed each night 'til he was done surfing porn. i'm not kidding. And that was often 3am. I really like the guy, we got along great, but I really needed my own space. But that was not an option because i couldn't work enough to pay my medical debts, and also pay rent. It really sucks to be dependent on someone else once you're no longer a child.

i also have friends who are on disability. a couple of them could go back to work, but they instead dig in their heels and spend a lot of time justifying loudly to everyone why they need to be on disability. they, too are dependent, just not on an individual. SO if you can work and not make your condition, work. You will be happier, and way better off in both the long and short run.

Even if you can't work, or you can only work part-time, it's just so important to have a life other than your illness.

It's also important to actually deal with your illness, though- it's such a balance. You have to face whatever reality there is to face and get the thing under control (by whatever means), so that you *can* have a life. The temptation for most of us is to just plow through, nose to the grindstone, and hope it will go away. It won't. Trust me, I know, I tried it this way and it didn't work. I just got sicker, and thinner, and paler, and more anemic, and closer to death, til I was a walking ghost who couldn't get out of a chair on my own, at 25 years old.

Once your body has gone autoimmune on you, you need some kind of intervention, either with drugs. or lots of acupuncture, or faith healing, or whatever method works for you. It's not a cold, or an annoying person- it's not going to go away if you ignore it.

The good news is, you can- just about guaranteed- get it under control.

Did I mention I love acupuncture?

Fiends and family know NOTHING about autoimmune disease if they tell you to exercise through the fatigue! That can make things worse!!! that is dumb advice. It shows the lack of understanding of what happens when your body goes autoimmune. Often the things that are good for you- vigorous exercise, immune stimulants, sunshine- are actually quite harmful when you're in the midst of an active autoimmune disorder.

i will tell you this- i've had lupus since 1992, and i feel my best when i get acupuncture. when i'm in an active lupus flare, i get acupuncture once a week. i can back off to every month when i'm stable. it boosts my energy, helps me sleep, reduces headaches, and helped me heal from the stroke. I also take medications, but the acupuncture also helps me reduce the doses.

Not all acupuncturists are the same. Go after one who is trained in both acupuncture and herbs (you probably don't want the herbs but you do want someone who has the extra training), and ask around for a recommendation, like you would for a mechanic. Plug in your zip code here and search:

i've had this thing for 16 years so i've tried a lot of things- chelation, bodytalk, electronic biofeedback, lymphatic massage, herbs, vitamins, dental procedures... i swear by acupunture. that and diet modification. google "anti-inflammatory diet." generally, you want to eat as lowfat and vegan (no animal products) as possible, also avoiding processed sugar and junk food, such as sodas, esp. diet soda.

when i was off sugar and on acupuncture for 18 months, i felt like me again. i really gotta kick sugar again... meanwhile though i am getting acupuncture and i do chi gong in between visits, something easy, simple, and free i can do at home in any weather that only take 15 minutes a day.

Sunday, November 9, 2008

What' So Bad About Lupus?

A friend asks: "Have you ever spoken to someone and told them you had Lupus only to have them say to you that they know someone who has it that that person is " in Perfect Health?" Then they look at you as if to ask what's wrong with you that you think its so bad. Its aggravating to say the least."

The first and most obvious answer is this: You can't be in perfect health and have a diagnosis of a chronic illness. That's just so obvious. If they were in perfect health, their diagnosis would be "perfect health." Not "lupus."

Secondly, you can't see lupus, so how do you know by looking at someone how healthy they are? Maybe you only see them on their good days, the ones when they are up, dressed, made up,. and out and about.

It reminds me of how we look at other people's relationships and think "oh their marriage is perfect." then we're stunned when they split up.

From Douay-Rheims Bible 2 Corinthians
For we dare not match, or compare ourselves with some, that commend themselves; but we measure ourselves by ourselves, and compare ourselves with ourselves.

To borrow some wisdom from 12-step programs, don't let this person live rent-free in your head. Ultimately what matters is being at peace with yourself and your choices. If you know you're doing what you need to do, and you believe you're living the best life you are able to give your particular case of lupus- we are all so different- then it really ultimately doesn't matter what this person thinks. Because they're not living with it.

You can get educational pamphlets from the Lupus Foundation or the Alliance for lupus research if you want to educate someone and have a piece of lit written by a third party, giving your point of view some credibility.

But if you want a short-term solution on how to shut this person up- and who wouldn't?- tell her "that's interesting. I know a person with lupus who had a stroke and kidney failure." (me, by the way).

Monday, October 27, 2008

lupus and money

Universal health care. Poor Hillary Clinton saw this issue as being of utmost importance in 1993. Everyone criticized her and shot down her proposals. She has taken a lot of flack for being a powerful smart woman, and the idea was a head of its time. *She* was ahead of her time- but then, someone had to open the door to ideas like this one.

We are, as Obama has stated, the only industrialized nation in the world who does not provide health care for its citizens.

I've had my finances destroyed 3 times because of lupus. Not just the not being able to work for a year at a time, but the medical (and life) expenses that pile up while you're not working. I spent my savings, I emptied out my mutual funds, and then I went into debt. 3 times. For a year, I lived in a friend's computer room, sleeping on an air mattress with my things in storage while I tried to get my life back together.

I have a friend who lives in England who has cancer. He's paying basically nothing for his treatment, and getting at least as good care as any of us over here would get.

He's walking around in a dream-like state trying to deal with the illness, working as much as his body will allow him. But *not* having that added stress (which makes your health worse, I might add) of wondering if you'll lose your home and or go bankrupt because of the illness. After 16 years of lupus repeatedly destroying my savings, I can't imagine what a relief it would be to "only" have to deal with the illness! Well, actually I can. I was added to my husband's corporate health insurance this year, and it is *so* much better than Medicaid or medicare. I am thanksful for both fo those insurance programs, as they covered me once I was no longer able to get insurance (pre-exiting condition), but unfortunately, the reimbursement from those programs is no so low that few doctors are accepting either of those anymore. And the prescription covereage on medicare is lousy. Last year I paid $6000 out of pocket for prescriptions- and I ahd insurnace!

Further, I am still concerned that if me hubby loses his job (they laid off 800 people last week), I could be left with "just" medicare again, and back to paying $6000 out of pocket a year again.

Did I mention that Americans pay more for the same drug than any other country, and that our government made it illegal for people to buy drugs in Canada and bring them back?

Let's hope our government finally makes health care affordable and accessible to all. I'm in good shape this year, but I haven't forgotten that many people are not in good shape, and I'm only one hubby's layoff away from not being good shape myself. Hoping and praying for big changes for the good of our country.

Thursday, October 23, 2008

Marriage and lupus

Being married can be both wonderful and stressful at the same time.
I was surprised by the guilt one feels when you realize that marriage is a lot of work- like you think you should be all sunshine and happiness, but now you realize- crap! there's a lot more cleaning and cooking to do! And, don't want to complain about it, but there is a big time investment in learning to communicate with your significant other, and making sure they're happy and the relationship is healthy.

And let's not forget about how stressful the actual process of getting married is! Oy! Men may never understand this one (unless they're gay, then they totally get it).

Every time my hubby tells me our wedding day was the happiest day of my life, I smile and say that's sweet. because i am really glad that he was so happy to be marrying me, and that his wedding day was perfect. But I was totally stressed out! We were supposed to have a casual rehearsal dinner, but then i got word my older sister had bought a "hot slinky" dress for the occasion, so i had to scrounge up a nice dress on short notice. Not acceptable for the bride to be the most casually dressed person in the room!

Between one of my bridesmaids making sure I knew she hated her bridesmaid's dress ... or people complaining because they would turn around and the bartender would throw out their drinks so my parents would have to pay for another one... or me having to decide when to send everyone upstairs to dinner, or being dragged outside to take pictures while leaving other folks inside, or not being able to get my bustle to work (i had 6 people working on it during the reception, finally went to the first dance with my train all over the floor)... My decision-making and fire-putting-out was not over til we reached our honeymoon destination.

I would marry my hubby all over again in a second, but I wouldn't want to go through that wedding planning thing twice. the gown was nice, the groom's a keeper, the presents were nice, the pictures are sweet, but i never want to undertake such a huge party again. Too many decisions, too many people to try and make happy, too much stress. And stress is *very* bad when you have lupus, especially in large long sustained doses laden with high emotions. If I had to live it over again, i'd hire a wedding planner. Without even blinking.

I almost forgot to mention that the original date for the wedding was october 2006, but we didn't get married 'til June, 2007. I landed in the hospital (with lupus) 6 weeks before the original date, because of the stress. So many freaking decisions and so much drama. We had to move the date out by 8 months (i wanted a year so my hair could grow back after being inundated with prednisone in the hospital) but other folks involved would only go as far as June 30. Which weirdly is my Mom's birthday and Mom and Dad's wedding anniversary. And for some reason we had to sing happy birthday to one of the children attending not once but 3 times during my wedding weekend, including at the actual wedding (but not for my mom?).

Once married, i realized the housecleaning and cooking was on me. Before he realized it bothered me, my hubby used to invite people over then says "Oh we'll just order a pizza, and they can sit on the floor. if they don't like the mess or lack for furniture, screw them!" He didn't realize ('til I told him) that this reflects on *me* now, not him. It still always reflects on the woman, an old pre-women's lib relic. He gets it now, but only after inviting people over several times and watching me freak out trying to come up with edible food and make the house look habitable (I'm really not much of a cook). Now, I say "OK I'll clean toilets, you do sinks. i'll sweep, you vaccuum." etc. Keeps me from being resentful, and he's totally cool with it.

On the flip side, he has wound up with the traditional role of provider, paying the mortgage, all the bills, and I sporadically contribute what I can. I'm sure being breadwinner for two is an amount of stress I can't even imagine. Or handle.

So, now we got past all those initial hurdles of the wedding planning, the sorting out of gender roles, and learning to communicate with each other... there are tons of great things about being married. Many more pluses than minuses. Having a best friend who you live with, someone to share all the high and low and in between points of life with. Through sickness and health, for better and for worse, having a real home to come home to (and we adopted the sweetest dog ever born). After all that initial craziness, being married is far less stressful (assuming you get a great spouse of course) than being single.

Got thought on this? Leave a comment.

Monday, October 20, 2008

to work or not to work

very cool idea for a book: Women, Work and Autoimmune Disease: Keep Working, Girlfriend!"

I watch Suze Orman a lot, and she mentions something I had a hard time putting my finger on, which is if you decide to stop working for whatever reason, illness or not, and depend entirely on your spouse, a couple things happen. One, you lose some or all of your power in the relationship. Two, you limit your options- it's harder to get back in the workforce than it is to remain in it. Three, you find you have less to talk about with your partner, and maybe needier.

Now, granted, I had an extremely wonderful non-working year after having a stroke, after I got my pain under control, of course. I spent the year writing songs, hanging out with friends and being creative. I felt very alive.

So I don't think you need a job to be interesting or to have a full life.

But eventually, I had to work- I was not married and even with medicaid, I still had expenses.

And now that I am married, my hubby offers to pay for everything(!) which is awesome, but I still feel the need to work. Fortunately, I can do what I do part-time, so it's not all-or-nothing. If I had to go work full-time in a high-stress job, I'd be in the hospital in 2 months.

So, it's an individual decision, and one that can change over time.

I don't have a definitive opinion on working or not, as I do on biopsies, because people's severity of lupus is so different from person to person, and even from year to year with the same person. But I do think most of us, left to our own devices, with no structure, nowhere to be, will just sit in our PJs and fritter the day away, and not feel too good about it after a while. It sounds great in theory, but once you've done it, you realize most of us don't have the discipline to structure our own day, every day, with no outside motivating force, like someone expecting you to be somewhere. The only reason I was so motivated during my year off, was that I was fighting for my life, fighting to get back everything I lost during the stroke, and fighting to beat my prognosis of needing dialysis and kidney transplants within 5 years. i was highly motivated to beat the odds, because I've seen the results of those who have to go through dialysis every other day, and the results of folks who never recover from strokes. So I had those motivating factors, and I looked so horrible, so pale, anemic, weak, hair falling out, puffy prednisone face, that I desperately needed something to bury myself in, so I lost myself in the creativity of writing songs.

Now that I look mostly like myself and am not so frantically fighting the near-impossible, no, I'm not nearly as motivated and I don't always use my free days well. So I work part-time, and I feel very good about that. I think keeping one foot in the workplace is a great compromise for me, because if -God forbid- anything happened to my husband I wouldn't be totally lost financially. And right now, we don't really need whatever money I earn, so it can serve as emergency money (if God forbid I end up in the hospital again) or savings. So that's where I'm at now. I tried for the longest time to work full-time and I realized it's just too much for me. I've gone into near-kidney failure (30% function) 3 times now. Now I just do a few shows a month (then sleep all day the next day) and teach guitar one afternoon a week. I feel like I have a life, but I'm not pushing myself into relapse. A tricky balance, but after 16 years with this diagnosis, I'm starting to learn the deep meaning of the serenity prayer: God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. All three sentences, so important.

Maybe next time I'll go further into how other tools from the 12-step program are useful in dealing with chronic illness. Because really, alcoholism is also a chronic illness, too. We can certainly learn from them.

Friday, October 17, 2008

War on War- give peace a chance!

I've gotten the stomach flu twice since getting lupus and lost 3 weeks to it. i was in the bathroom for a week both times, and shaky and wornout for the next 2. and let's just say i'll never eat chocolate chip ice cream again.

I don't know if our immune system is really stronger, as is suggested by some doctors (those with immune systems having "hyperactive" immune systems) or if it's just confused, and going after the wrong things.

Columnist Dr. Paul G Donahue, MD, says "Lupus isn't a blood disease. It is more like an illness, such as rheumatoid arthritis. It's one of those many illnesses where the immune system turns against its own body. It produces a slew of antibodies — immune system grenades — and tosses them at many organs."

Most people in alternative medicine would say our bodies are overloaded with toxic stuff - chemicals pesitcides, colorings, etc. That are now part of modern life (autoimmune disease rates have tripled in the last 4 decades, so i don't think it's genetic!)

So, grenades. Good metaphor. Maybe it's like the war on terror. While we're distracted fighting in Iraq (lupus/ attacking our own healthy tissue because it's been infiltrated by foreigners), other terrorist cells (cells! ha!) are sneaking around in other parts of our bodies wreaking havoc. Sadly i don't think you can win a war on terror. Best we can hope for is a tenuous peace, which is the same we hope for with lupus. i'd love to eradicate it, but i think the best we can hope for is a long deep or even permanent remission.

so why do i think we get sicker longer with things like the flu? well for one thing, out defenses are down if we're on immune suppressants such as prednisone, plaquenil, cellcept, etc.- IOW most of the drugs that are thrown at lupus. If not the drugs, then the war on terror theory. Like an army stretched too thin, our T cells can only be in so many places at once, then it runs out of resources. Maybe a combination of both.

Those in alternative medicine suggest, and my experience has borne this out, that reducing irritants helps lessen symptoms as well as reduce the needed amount of meds to control lupus and other autoimmune diseases. It is commonly suggested to go on either a gluten-free, yeast-free, or low-fat vegan diet. My 18 months on the Candida diet, I felt great and I was my ideal weight. I fell off the wagon, and while I try to at least limit my gluten intake, it really needs to be a completely gluten-free diet to make any difference.

Jenny McCarthy has just released a book about her experience healing her son from Autism. His autism set in the moment he received a large dose of multiple vaccines, and over the course of several years on a gluten-free, dairy-free diet (watch for hidden dairy and gluten in many products), and much unconditional love, he came out of it and is now a loving, outgoing child. The Center for Disease Control dismisses her amazing story as "anecdotal." Anecdotes are where breakthrough science begins, if it is sincerely interested in healing (and not controlled by those who want to sell us drugs and vaccines). Jenny refers to her son's autism as both "autism" and a "vaccine injury," and while she hesitates to say he is healed, because she feels that his autism could be re-triggered by environmental and dietary toxins, she does say he is recovered. A tenuous peace.

I believe we can find a tenuous peace with lupus and be on few or no drugs. But we have to be willing to make some tough choices and be disciplined about our diets, and to experiment a bit 'til we find what works for us. It's hard work (who wants to give up pizza?), and some folks are going to think you're crazy. But in my experience, being sick is hard work, even more people think you're crazy (hypochondriac anyone? lazy? all in your head?). And it sucks a lot more.

Monday, September 1, 2008

Hands offa my kidneys!

The evil kidney biopsy is on my list of 15 least medical procedures, along with catheter and root canal. the thing about kidney biopsy is that while your doc may tell you it is necessary, many other docs will tell you it is not. and according to whatever book it was i was reading the first time i was *told* I *needed* a biopsy, these biopsies are a matter of debate among docs as to whether they are necessary and whether they even provide any useful information.

As far as I can tell, there's no real upside to getting a biopsy.
However, there are definite downsides. There are major arteries in the kidneys. if they happen to hit one while rooting around trying to snip a few pieces of tissue off your kidney, you can have a dangerous amount of internal bleeding. if you are a bleeder, like me, you may spend all day in the hospital receiving anti-coagulants until it's safe enough for them to do the test (my 2nd biopsy). or they may choose to instead play it safe and do an open biopsy (cut you open) so they can see what they're doing better. if this is the case, you will be put under general (complete) anesthesia, intubated, both of which are not without risk, in a hospital, which is teeming with germs. then you may (as i did) get infected and have green puss oozing out your side. in my case I'm allergic to so many antibiotics i decided to kill it off myself by taking 60 garlic pills a day. in the summer. with no air conditioning. (on the other hand, i was completely safe from vampire attacks). (my first biopsy).

both times i was told it might be a class 4, whatever that means, and both time i was told there was "not enough tissue."
i really suspect this test at best is a useless exercise, and at worst an invasive and unnecessary way to make money off the backs of and at significant risk to patients.
There will not be a 3rd biopsy on my kidneys.
they can get the info i need from urinalysis and blood draws.

Friday, August 29, 2008

Post-partial depression

Last week I wrote about my visit to the dentist and how much the Novocain shot hurt. I actually had to get two shots, because I could still feel the drill after the first one. But the drill didn't really hurt, so I asked the dentist not to give me a second shot, but she did anyway. The second that Novocain entered my system I instantly felt like crying.

Several days later, I gathered enough of my senses to look it up online. Once i finally figured out how to spell Novocain, it all fell into place. (FYI, the generic version has an "e" at the end, and if you search online using this spelling you will find a song by Green Day and a weird movie of the same name).

According to, the FDA advises using as low dosage as possible to avoid adverse side effects. And warns against using Novocain on patients with known drug allergies, of which I have several. (Several drugs give me a full-body rash, one makes my tongue swell up, one makes me hurl, and latex makes my skin fell like it's burning.) So, with several drug allergies listed on my chart, why did I get not one, but *two* shots? I ended up with a 6-day attack of fibromyalgia, of which I had been free for several months, severe anxiety, and major mood swings. All of which ended after 2 back-to-back and lengthy acupuncture treatments, but if I did not have a fantastic and available acupuncturist, i would still be suffering instead of sitting here typing about this in past tense.

The main lessons I want to share from this experience are these:
First of all, if you have drug sensitivities, you may not want to use Novocain. l have learned, via my pointing and clicking, that there is a far more hypoallergenic drug available that will give the same numbing, called Lidocaine. In the future, I will list Novocain (and Novocaine) as a drug allergy, so that I do not have to go through this again. It would probably be wise to do a detox of some sort an such an injection as well, since these things have to be metabolized by the liver. (I already take milk thistle every night because I take prescriptions every day).

Second of all, before embarking on major dental procedures, make sure your body is ready to handle the trauma. Yes, trauma. It is important to deal with cavities and broken teeth, as they can lead to larger problems, but make sure you are ready, or at least that you have some form of support (such as acupuncture, or another form of complementary medicine) to help you get back to yourself afterwards. We don't need to volunteer for a setback in our efforts to regain our health.

Third, always remember you are in charge. When the dentist starting grinding on my good tooth to make it match up with the new porcelain inlay on the tooth below it, I told her to stop it. When I go for my next cleaning, I am *not* going to do the fluoride treatment, which they handed me to swish around my mouth without asking me if I wanted it, and for which my insurance did not pay. I do not care about the money as much as the fact that Fluoride is a chemical. It is toxic. Its benefits are questionable, and its toxic qualities are a frequent topic of discussion in Europe, where they do *not* allow Fluoride in the water supply. The US drinking water supply is routinely fluoridated, as are most toothpastes. There are only a few toothpastes out there that do not contain fluoride, such as Tom's of Maine (I love the cinnamint flavor). I don't need any more toxic crap in my body than is already dumped there on a daily basis through air pollution, pesticides, flame retardants in fabrics, and Lord knows what else- I'm not going to volunteer to have more chemicals in my body! Read about fluoride, both sides of the discussion, from more than one source, and make your own decision.

Friday, August 22, 2008

Jaw-dropping day at the dentist

oh if only my dentist was as wacky as Steve Martin.
so far, i have survived visit 2 of 3 scheduled visits in the remodeling of my mouth (structural, not cosmetic- getting my first cleaning in 14 years, 2 molars restored with porcelain and a nightguard made. you night-grinders know what this is: we get to look like Rocky every night. Such a turnon! the only thing sexier than seeing your mate wearing a big rubber mouthguard is watching them take it out and seeing spit flying everywhere. Oh yeah!)

i have dental insurance (thank you, hubby's job) so about 2/3 of the cost is covered so far, but i fear i may be about to hit a cap. or is it a crown. HAHAHAHA. just a little tongue-in-cheek humor. HAHAHAHAHA
no they didn't give me laughing gas. and dang i coulda used some. my fear and loathing of the dentist outstrips my fears of both new york city and Best Buy. stay tuned to lupusandhumor and learn all Carla's neuroses, one by one.

the worst part for me is the novacaine shot. crap it hurts! i had to get 2 shots today- 1st one wasn't enough. i hate shots, i hate needles, i get more of each every year than McCain has houses. i never get used to it. you're being injured when someone stabs you in the vein and takes out, oh 20 vials of blood. but that's another story, one covered quite thoroughly on my "Sick Humor" CD and in my previous blogs.

Anyway today's visit was 3 hours and $750. oh but they validated my parking, so that was free.

Next time, and I'm not kidding, I'm bringing a blanket (too cold in there), sunglasses (flourescent light glaring in my eyes), a teddy bear, and Joe to drive me because- no kidding- I'm going to dope up on either attivan or a muscle relaxer. or both. they'll have to hold my jaw open. i'll be so zonked i'll have to wear wear a bucket to catch my drool. I'm exaggerating- but this is what I must promise myself, if I am to get motivated to go back for more torture in 2 weeks. I think i've found something I hate more than a pap smear.

When I told the dentist that i had these drugs in my cabinet (ok, bowl of bottles on my counter, not very feng shui, but i never forget my important meds), she looked jealous and said "wow." i told her if she wanted lupus, she could probably get some heavy drugs too (but I don't recommend it). It drives me crazy when people get jealous of folks with lupus ("oh i wish I could lay in the bed and read!"- after I had a stroke! I wished I could lay in the bed and read, too, but i see spots and zig zags all day long!) Point is, if your life is so messed up that you're jealous of someone with a debilitating chronic illness, first of all, keep it to yourself, and second of all, it's time for you to change your situation. Oy!

Anyway to find out why I'm putting myself through all this, tune in later for That's Inflammatory! Part 5
(I have no idea how many parts there will be to this series! I'll keep writing til my sed rate is zero).

Monday, August 18, 2008

That's inflammatory! Part 4

The Biblical Diet is the focus of Part 4 of this series.

Who would know better than our Creator what makes our bodies function properly, and give us overall well-being? Feeling whole in body creates a calm in our minds and souls and helps us in every area of life.

Beef: on special occasions
Lamb: on special occasions
Pork: never
Shellfish: never
Domestic Fowl: chickens, geese, pigeons, partridges, duck and quail: more frequently
Fish: frequently
animal fat and blood: never

Some folks might think God was a vegetarian, Apparently not. We are instructed to eat red meat, such as beef or lamb, but *sparingly*, meaning on special occasions. Not daily, or even weekly. Just at feasts or festivals. We are instructed *not* to eat pork or shellfish *at all*. Maybe that's why Jesus fed the masses with loves and fishes, not loaves and ribs. When i asked my Jewish roommate why Jews did not eat pork or shellfish she said "It's because they eat garbage." OK! That's a good enough answer for me!

Animal fat and blood are where the toxins are stored. For me, the idea of eating either is so repulsive, I don't need a reason to not eat it, but if this is a delicacy for you, then know this is where the most toxic stuff is.
eat only 30% of your calories from fat

Olive Oil (virgin or extra virgin only): 2 thumbs up
Canola Oil: 2 thumbs up
canola, safflower and sunflower: also good
butter: in moderation
margarine: avoid
cheese: in moderation

wheat- good if it's not refined
barley - ditto
millet- ditto
Spelt: highly recommended
legums (beans): strongly recommended (try not get to overprocessed salty canned beans)

Spelt has never become a mainstream grain, and so of all the grains, it is a rare one in that it is still in its original form. The spelt seeds of today are just like the spelt seeds of biblical times. Wheat has been manipulated and modified so many times that a large part of our population has become intolerant to wheat, in the forms of celian disease, gluten intolerance, and carbohydrate addiction.

Fruits and Vegetables:
Eat lots of these!

veggies: leeks, onions, garlic and cucumbers: yes!
Fruits: apples, figs, grapes, berries, apricots, melons and pomegranates, grapes, olives.

in the Bible, fruits were eaten fresh, dried, pressed into cakes, and squeezed for juice. But beware, fruit juice on the typical grocery store shelf can contain as little as 10% juice. It cna also contain a *lot* of pesticide. You want organic 100% juice, which you can either buy or make yourself.

Yes, it is more work and costs more to eat well. It takes more effort to find healthy food (in Harlem, you have to travel 45 minutes each way to buy a tomato!). But what good is it for modern medicine to keep up alive to 100+ years old if we are riddled with disease. The cure for many ills is to simply stop eating and drinking garbage. Granted, if I eat garbage, then I won't be kosher, and if I run across a kosher cannibal, they won't want to eat me. But even taking into account that one potential encounter, the odds are still pretty low that eating garbage will save my life.

However, my odds of inflammation are 100% if I eat garbage, and my odds of heart disease and obesity are quite high. When you survey people and ask them if they want to live to be 100, the answer is always "it depends.." on what? Most people are afraid they will be sickly. If you could guarantee they would have their health, then the answers would be quite different.

We are not victims. yes, some of us have more health problems than we deserve, while others *do* eat garbage and seem to never gain weight or have other consequences. But most of us *know* in our hearts that if we want peak performance from our bodies and minds, we should be fueling our bodies real food, not cartoonish boxes of "fun food."

It's tempting, but I will not purchase a box of "relacore" or whatever the latest fad diet pill is on TV (that will probably later prove to be the cause of many heart attacks), nor will i be getting liposuction (have you ever seen footage of this violent invasive procedure?), so that I can keep on eating whatever I please.

Eating real food also appeals to the rebel in me who wants to thumb their nose at the system and say "I'm not buying into your crap! You can't control me with your ads and your promises of something for nothing!"

So if you can't get motivated by doing what the Lord recommends, or by knowing you're taking back control of your health, then do it to get back at The Man.

That's inflammatory! Part 3

The Chinese have a great saying: Eat to Live, not Live to Eat.
We Americans live in a "Eat to Live" culture. We eat foods we like, rather than foods that are good for us. We think eating should be fun, and every meal should be a "treat." And there is often no eye open to the consequences of our eating habits. The when our arteries harden up or we get irritable Bowel Syndrome, no one tells us to stop drinking a 12-pack of soda every day. Our doctors tell us it's genetic. While it's tempting to just pop some pills and continue with our destructive lifestyles without having to suffer the consequences, wouldn't it make more sense to cooperate with nature? Because, as one who's had ot take a lot of pills, I can tell you, it's expensive and they all have side effects, some of them quite serious and potentially permanent. Like cataracts, diabetes, osteoporosis, obesity, and oh yeah, death.

This segment of "That's inflammatory" deals with the sources of LDL (the "bad" cholesterol). Saturated fats and trans fats increase LDL ("bad" cholesterol) in the blood, and high LDL increases inflammation.

Avoid: full-fat animal products (fatty meats, cheeses, cream), commercial cakes, cookies, crackers, pies and breads.

Eat: extra-virgin olive oil, canola oil, fatty fish such as salmon and tuna, nuts and seeds—especially walnuts and flaxseed. Omega-3 fats, decrease inflammation. It's not wise to avoid consuming *all* fat, which would leave you constipated, but about eating the right kinds of fat.

Avoid: refined grains, white bread and potatoes, candy, soda, sugar, sugar, sugar. things that elevate blood sugar render LDL (the "bad" cholesterol) more dangerous.

Eat: fruits, vegetables, "real" bread (whole grain), beans, sweet potatoes, red wine, cocoa and turmeric.

If you're looking for a diet-type to follow, the Mediterranean Diet is a good model. When I first decided to avoid gluten (wheat products mostly), I discovered food such as hummus and babganoush were quite tasty.

There's also the biblical diet. apparently, God was quite specific about what to eat in the Old Testament. I'll post a summary of that diet in Part 4.

That's inflammatory! Part Two

Inflammatory? Not sure. toxic, yes.
Sodium Nitrate. This chemical is used in meat packing plants to preserve meat. Pretty much any meat you buy at your average grocery store or deli is going to have been preserved with sodium nitrate. I sincerely doubt that the guy behind the deli or meat counter wants to kill you by feeding you something toxic. But did you know that you *can* kill someone with a large enough dose of sodium nitrate? In fact, a woman who was in love with another woman's husband purposely dosed the wife with sodium nitrate (which she obtained from her job at the meat-packing plant). She gave her enough to make her sick, not kill her.

according to "How Stuff," Stuff like salami, hot dogs, pepperoni, bologna, ham, bacon and SPAM all normally contain sodium nitrate as one of the ingredients. Fresh meats generally do not contain any added chemicals.

The chemical is added to inhibit botulism and keep the pink color, so when you open a can of SPAM, it's pink instead of grey.
I don't know about you, but it really makes me think about whether I want to keep eating lunch meat.

Is it inflammatory? well, we know it's toxic. large quantities of sodium nitrate have caused cancer in animals. Meat itself can be inflammatory.

Saturday, August 16, 2008

That's inflammatory! Part One: Diet soda

What not to eat if you have autoimmune disease: part one

I know for a fact that lupus is characterized by inflammation. I can only imagine other autoimmune diseases also have inflammation as a characteristic. So wouldn't it behoove us to avoid behaviors and situations that increase inflammation? There are many irritants out there that trigger an immune response.

I can't control the fact that planes fly over my house and pollute the air, or that corporations dump poisons in our water.
And I can't control the fact that much of our food supply is garbage. But I can control what I put in my mouth. I don't have to eat the garbage- that is a choice (though not always an easy one!). And some of the things that are touted as being good for you are actually garbage.

Have you tried to find something healthy to eat in your typical restaurant? Something *not* fried, or laden with fatty sauces, sugar, MSG, salt? I end up defaulting to what I call the "typical girl special": chicken caesar salad with the dressing on the side. To be a true "typical girl special," that would come with a large diet coke. But I have ended my decades- long romance with diet sodas. I tell you, it's like quitting cigarettes. I honestly can't tell you how many times I quit drinking diet soda before I finally succeeded, and I still live in fear I'll fall off the wagon. I just tell myself every time I look at a cold dripping tempting bottle of diet something, "poison." Some sources say that aspartame (a.k.a. "nutrasweet," a.k.a. "Equal," in the blue packet) turns into formaldehyde when it gets into your body. Some say it turns into formaldehyde *before* it enters the body, if the temperature is warm enough. Hawaii tried to ban aspartame (a.k.a nutrasweet) from its food supply, and the US federal government wouldn't let them! (Can you imagine how angry Americans would be if they got to paradise and there was no Diet Coke? "What kind of hellhole is this??! Honey take me home!") There are efforts in other countries to get this stuff out of their food supplies as well, including Ireland and New Zealand. Some theorize that it is a major contributor to Gulf War Syndrome. Others say it causes to birth defects in our children and, in a trial, an 86% *death* rate in monkeys. ( ). This "food" has no place in our diets, in our fridges, in our food chain, or in our stores.

I do believe this: there are no casual diet soda drinkers. People either don't drink it, or they chain-drink it like a crack addict, waking up with their first thought being "I gotta have me a hit of diet soda." i have ridden my bicycle to the store in my pajamas to get a diet coke before i would do anything else. It was ruling my day, every day.

I find that getting a monkey off your back is a little more doable if you can find some kind of replacement. I mean I wasn't going to go *caffeine* free on top of ditching the tyrannical nutrasweet. One vice at a time. So, about 9 months after giving up the junk, i am still doing fine drinking filtered or water green tea (which I brew at home) with stevia, a natural sweetener. If I really feel like partying, I have a regular Coke. But I don't do that too often, because it is made with high fructose corn syrup, which is genetically modified (and fattening). I may not be Elle MacPherson, but I am not ready to have my genes modified. And something tells me consuming genetically modified foods is not going to get me any closer to looking like Elle. I hear Mexican Coca Cola is still made with sugar, and there are some natural sodas out there as well, made with juice. And there's seltzer, which is great plain or with a splash of organic juice (read the seltzer bottle- some of it has nutrasweet!!). Of course mankind did pretty well for several eons without sodas to drink.

Many of us with a lupus diagnosis feel like we're being randomly attacked by some mysterious force. But there are some things we can do to limit the likelihood of attack, and one of them is to stop eating garbage.

read more about nutrasweet's dangers:

coming in part 2: sodium nitrate, vegan diets

Sunday, August 10, 2008

Pick your poison

Wow. Comedian Bernie Mac, dead at 50. The papers say it was pneumonia. My husband said "Who dies of pneumonia anymore, especially at age 50?"

Someone who is on immune suppressants, that's who. Bernie Mac had sarcoidosis, an autoimmune disease, and it was being controlled by immune suppressants. The doctors declared his condition to be "in remission," but that remission came at the price of him not being able to fight off pneumonia.

This is frightening for those of us who have been given the choice between dying of kidney failure or having our immune suppressants squashed, leaving us vulnerable to death by pneumonia and other illnesses that would otherwise be life-threatening, were our immune systems not suppressed. What are we supposed to do? I know for a fact I would be dead if I hadn't finally given in and taken the damn prednisone. But I resisted taking it for 8 months because I read about all the side effects and those to me sounded worse than just being in pain. I didn't consider that my vital organs were being attacked.

But at age 25, I was not ready for osteoporosis, diabetes, hair loss, weight gain, mood swings, a giant moon-face, acne, cataracts, immune suppression (meaning, vulnerability to all diseases) and all the other garbage that goes along with long-term high-dose prednisone usage. In retrospect, I think there would be something wrong with me if I *didn't* find this idea objectionable! Who wants to be a fat, moody, moon-faced, blind, brittle-boned diabetic before age 30, if there is any other possible way to deal with their situation? I mean, I was still single. This is no condition to be in on the dating scene. Crap, it's just no way to go through life, especially when your condition is caused by medicine.

What are we supposed to do? Well, according to Mike Adams ("the Health Ranger")... "It's simple: Visit a naturopath, get off all the chemicals and medications, eliminate all the junk from his diet (processed foods, etc.) and transition to a mostly plant-based diet rich in superfoods and living foods. His lung condition would have disappeared and his immune system would have been strong enough to withstand common infections. (He also would have experienced increased energy and lost some excess body fat.)

This is a fine idea, in principle. But Mike Adams, I'm pretty sure, has never had to first-hand deal with either sarcoidosis or any other life-threatening chronic illness involving demoralizing chronic pain. I decided to try the naturopathic approach myself the first time i was ill, and let me tell you- when the disease is in attack mode, unless you have someone making your food for you, and coming to your house treating you, you won't have the energy to do the amount of work it takes to get better using naturopathy alone. There is a lot of shopping for fresh food, driving to appointments, food prep and cleanup. and when i was in the condition I was in in 1992, I had to spend a half-hour working up the gumption to get off the sofa to go to the bathroom.

As much as I detest being on drugs, I've found them to be a "necessary evil" for periods of time in my life. I go on the drugs to stop the disease from destroying my kidneys, lungs, heart, brain, and whatever else it may be attacking, then as soon as I start feeling a bit better, I start doing the things I know I should be doing: acupuncture, gentle exercise, eating less garbage and more real food (fruits, veggies, nuts, beans, filtered water, salmon), and doing things and being with people who make me happy. and reading plenty of comic books. The two approaches work together, and I taper off the drugs as my test results improve. I desperately want to be drug-free, but I more desperately want to have all my original vital organs intact. I am presently not on prednisone. I've never been on it for more than a year, even though my doctors would like to keep me on a "maintenance" dose. I am on cellcept right now (I was on both immune suppressants for 9 months after my last attack), and as long as my tests are OK, I figure one immune suppressant in my life is enough. It's the costlier of the 2 drugs by far, but i get to keep my bones and eyes. SO from that perspective, it's cheaper than cataract surgery and double hip adn knee replacements, both of which, of course, leave you open to staph infection...

Point being, it's our lives. If I don't want to take prednisone, I don't have to. They can't make me. If I were a child, they could probably force my parents to give it to me, but i'm not a child (at least not according to my drivers' license). However, I have to live with the consequences of my decisions, and sometimes taking prednisone for 9 months is better than being in chronic pain while lupus eats away at my vital organs.

Wednesday, June 18, 2008

Attack of the Killer Kidneys

I've had kidney involvement with lupus since 1992. Or as the docs say, Lupus Nephritis. What it means is the lupus (immune system gone awry) is attacking the kidneys. Not so long ago, say 40-50 years ago, this was a death sentence.

But nowadays, this attack can be halted, and even reversed, with drugs. I've had my kidney function go down to somewhere around 25-30%, told it would never improve, and to be expecting a transplant/ dialysis within 5 years (that was 6 years ago).

In fact, my function has gone this low 3 times (with each lupus flare), and has always returned to normal after getting the lupus under control. The first time we used just prednisone. I also got chelation therapy from an alternative practitioner and went natural with my diet, avoiding gluten and making my own juices. I was on prednisone for about a year, starting at a high dose.

The second time I got sick (lupus flare as they say), I had prednisone, 4 blood pressure meds, chemotherapy (cytoxan) and some other drugs that were for other problems (no fun drugs like marijuana though- gotta move to California!), as well as chelation therapy, diet change (candida diet), herbs, and lots of acupuncture. Again on prednisone for about a year, the other drugs for 1-2 years.

the 3rd time, i refused the cytoxan because it made me so sick, and it has been controlled this time with prednisone (for about a year), cellcept (on this indefinitely- about 18 months so far. it can be very expensive, by the way, depending on your insurance), another blood pressure med, a few other unrelated drugs and acupuncture and diet change (low sugar, low salt, eliminate nutrasweet, avoid gluten). I always go back to my crappy diet. Will i ever learn?

I've had this disease since 1992, and I haven't had to go on diaysis or get a transplant yet.

I do know someone who had lupus, got a kidney transplant, is on some drugs to keep her from rejecting the organ, and hasn't had a recurrence of the lupus for over a decade! so, a transplant is not the worst thing that can happen to you. it was a new lease on life for her. meanwhile, I'm doing OK. I don't have the verve I did when i was completely healthy, but i've found a balance between doing stuff and resting, and hopefully will avoid a 4th "episode" as long as possible- maybe forever? It's possible (must not eat crap. must not eat crap.)

A note on the transplants, and this is really messed up. If you use medical marijuana, you may be refused for an organ transplant, even though the marijuana was prescribed by an M.D. The federal law trumps the state laws in this area. So, if you're in pain and also a candidate for an organ transplant, you're better off using Percocet (even though is causes constipation and is cut with Tylenol, which is toxic to your liver). SO, pop all the pills you want just don't smoke and plants.

So, anyway, if you've got lupus, and lupus nephritis, you'll be OK if you can get your hands on some prednisone (which believe me, they're happy to hand out. My cat and I were on prednisone at the same time once. His was cherry flavored. mine tasted like rat poison. or what i imagine rat poison would taste like). Prednisone sucks, but it works, and it's cheap, and you'll live to tell the tale.

Tuesday, June 10, 2008

Fibro What? The other F word

During and between the 3 lupus flares I’ve had, one constant has been my companion- fibromyalgia. After the big scares have all passed- my kidneys are no longer failing, I’ve recovered from the stroke, the neuropathy has subsided, I can eat, the fever is gone, etc.- the pain is still there. But I find that the fibro pain doesn’t seem to register with my doctors, because it’s not measurable on a blood test or an X-ray. So over these 16 years of dealing with both lupus and fibro, I’ve been pretty much on my own in dealing with the fibro. I’m sure I’m not alone in my feeling alone.

I have tried so many things to remedy the fatigue, the tightness and pain in my upper back magnify when I lie down and keep me awake at night, the tenderness in my arms, and general irritability.

I tried chiropractic, acupunture, diet change, chi gong, stretching, ignoring and denying, popping lots of advil, massage, capsacum patches, icy hot, heating pad, gentle exercise, not-so-gentle exercise, miscellaneous detoxification methods, stress reduction, meditation, journalling, and staying educated. For me, I’d say the least effective of these techniques has been ignoring and denying, though for some reason I hung onto that one the longest. The most effective? Acupuncture, chi gong, detox (taking greens, using foot detox pads, milk thistle, filtered water, eating lots of fruits and veggies), stress management (such as writing a list of things I’m grateful for on a regular basis, setting realistic goals, and disengaging from people who aggravate me; I also take rescue remedy, a flower essence)), getting enough rest, diet change (getting rid of junk food and diet soda), and having fun. Laughing and smiling releases endorphins, which are our body’s natural pain killers.

Which brings me to one of my favorite therapies- songwriting. In 2002, during the worst of my health problems, I started writing ridiculous songs about my situation. It all started when I was doing the 24-hour urine collection test, where you have to pee in a jug for 24 hours then bring your big jug of pee in to the doctor the next morning. At the time, I was trying to work my way up to being able to play the guitar again (I had had a stroke), and was playing the ukelele. The first song in the uke book was the old folk song “little brown jug.” Back and forth between the frequent bathroom trips (I was on diuretics) and the ukelele, well of course my first parody was called “Little brown jug, about peeing in a jug.”

After this little breakthrough, I spent hours writing every day and brought my song idea notebook to every doctor appointment. Whenever I was left sitting in the waiting room for 2 hours or longer, I’d just sit there and work on my songs. Now instead of it being an indignity, it was an opportunity. And now, not only was I able to laugh about my situation, using humor helped me gain perspective and take back some control. If someone was especially rude to me, but I was in no position to fight back because they were the only doctor in town who took my medical insurance, then I’d wait ‘til I got home and write a song about them (and not usually a very nice one- but in my songwriting and journaling life, I can say anything I want).
[hear the songs:]

While we can’t control our situation, or the actions of others, or even our bodily functions at times, the one thing we have control over is our response to any given situation. And in the end, that’s the most empowering thing of all. It is our choice whether this “thing” we’ve been given is a horrible burden, or even a gift that helps us to slow down and appreciate things around us that we never noticed when we were moving faster.

Fear Factor: Vitamin D

How interesting, and yet not surprising that we have a vitamin D deficiency in a culture where people spend their entire day indoors or in a car, train, mall, classroom, or bus. Vitamin D comes from: vitamins, vitamin-fortified milk (milk as a "health food" is another topic entirely) or other vitamin-fortified foods and, the only natural source of vitamin D: it is made by the body when the sunlight hits the skin.

A study found that 40% of children are vitamin-D deficient, which can cause thinning bones, rickets, seizures, a weakened immune system. . They also found that drinking a lot of soda and being overweight were also factors that caused demineralization, or leaching of vitamin D and other important nutrients.

I think we as a culture are paranoid about the sun to the point of hurting ourselves by not getting enough of it (with the exception of those who lie in the sun for hours to the point of skin damage). According to this guy , the incidence of vitamin D deficiency increases in the winter, when there is less sun exposure. And people with darker skin need 3-6 times more the amount of sun exposure than those with lighter skin.

It's a great irony that lupus might be triggered by vitamin D deficiency, because lupus patients are specifically told to *always* avoid the sun. Some of them carry parasols or adjust their schedule so they only run errands after sunset. Those folks definitely need to get some vitamin D.

I am told that calcium doesn't absorb without vitamin D. It seems that folks with lupus really need to take a combination Calcium-vitamin D supplement (doctors usually recommend OsCal, which you can get over the counter), not just to make up for the lack of sun exposure, but also to protect against the bone-thinning caused by drug treatments such a steroids like Prednisone.

Wednesday, May 28, 2008

how much too reveal

Some folks are very open about their illnesses. others refuse to discuss it. i can understand both sides of this. at first, i talked openly about having lupus. but i had so many negative reactions, with folks basically blaming me for getting sick, or worrying it was contagious, or treating me differently, or thinking i was a hypochondriac. One friend even told me to “get over it” because i’d been talking about it for like a year. (well, I still had it, i was still trying to come to terms with it, and those feelings were no less intense one year after diagnosis than they were one week after diganosis.)

I've learned I can’t expect people to get it if they haven’t had to deal with a serious illness. Trying to explain having to budget your energy to someone who's never been ill is like trying to explain to a trust fun baby why you can't just take off work and go to Mexico whenever you like. So, I choose where and where and to whom i speak about this. oddly, i find i can be very open about it online and people don’t attack me online. Usually people are polite in real life and rude online where they can be anonymous, but in the case of illness, i find it to be quite the opposite, because people are frightened by their own mortality and vulnerability, and we are walking reminders of both.

So while i may have come to terms with having lupus, I realize the rest of the world has a long way to go in coming to terms with their own vulnerabilities. My not talking about lupus openly amongst "earth people" has nothing to do with my own acceptance of the illness, as much as not wanting to subject myself to the weird and sometimes cruel responses of others. Which is something I have accepted.

Saturday, May 24, 2008

just say no to... vaccines.

when i tell my friends i refuse to get any more vaccines, they think i’m art of the lunatic fringe when i say that these things were grown in monkey tissues and cancer tissues.well whether I'm a lunatic or not is a completely separate subject. But on this subject of vaccines and immunity, I *read*! I read a *lot*. my life depends on my being informed. i’ve had 3 major episodes with my illness. i dont’ know what set off the initial disease (though my theory is environmental toxins, poor diet, and extreme stress), but *both* of the second 2 flares came shortly after getting a spider bite, then going to the dr and getting a tetanus shot. coincidence? I think not.

According to the book ”the autoimmune epidemic,” the rate of autoimmune disease has *tripled* since 1970, and only in industrialized nations. this is *not* a genetic illness. we really have to stop blaming everything on genetics. i think people do that because it relieves them of all responsibility for their own care.

We can’t afford to leave our lives and well being in the care of doctors. They are overburdened and cannot take that kind of responsibility. Anyone who leaves me in the waiting room for 45 minutes after my appointment time then charges me $200 for 8 minutes of their time and rushes me out the door does not deserve that kind of power in my life. They're not paying enough attention to make the decision as to whether i change my diet, do acupuncture, etc. I only talk to them about my pills and anything that might interact with my pills (and i read the freakin' tome of side effects and warnings that comes with each bottle of pills). I don't *reject* conventional medicine, as I would be dead if i did not accept their help and take drugs to control my illness. but i do not allow them to rule my every decision. They are very limited in what they can do to help regarding a chronic illness, and i know that. They know that. So after they stop me from dying, I go elsewhere to actually feel better and regain energy.

I also want to speak out against getting pets vaccinated repeatedly. I don’t think it’s a coincidence that pets are now developing things like leukemia, lupus and cancer. My cat died of bone cancer in 2002, about 8 days after i got out of the hospital.

Vaccines by nature are not sanitary. They are grown in monkey tissues and cancer cells! ew! There are those in the scientific community who say that the AIDs epidemic in san francisco was cause by the mass vaccination of the gay community against hepatitis (read "AIDs and Its Metaphors."). A growing number of parents are refusing to vaccinate their children. Many believe that SIDs (sudden infant death) the epidemic of autism are linked to vaccines. While there are a few vaccines that are still important (measles, mumps, rubella), most vaccines are unnecessary, and overload our bodies with mercury as well as an onslaught of germs and viruses. Children are given as many as 20 vaccines by age two.

Seventten young women have died and a Michigan high school student developed lupus after receiving the new gardasil ("anti-cancer") vaccine. What good does it do to protect against the slight possibility of cervical cancer if you develop lupus from the vaccine? (or die?!)

In this country our immune system is already being assaulted with stress, pollution, and crappy processed food. We don't need more toxins directly injected into us. Our immune systems are getting plenty challenged already.

If you are a parent who does not want to over-vaccinate your child, you can either home-school or refuse the vaccines "for religious reasons."

Sunday, April 27, 2008

All kinds of treatments out there for lupus

i thought i'd share this, which i found on

this is a list of all the various treatments people
with lupus have tried. includes number of people who
tried it and percent of people who found it helpful.
Just like my survey, plaquenil and
prednisone top the list. not surprising, as prednisone
was the first drug used for SLE, and plaquenil was the

Plaquenil Hydroxychloroquine is an antimalarial drug, 651 Members helps: 83% of the time

Prednisone synthetic corticosteroid 604 Members helps: 90% of the time

Naproxen non-steroidal anti-inflammatorydrug (NSAID) 15 Members 86% of the time

Cymbalta Duloxetine hydrochloride for major depression... 14 Members 93% of the time

Neurontin Gabapentin for the treatment of seizures and nerve damage/ pain... 13 Members 100% of the time

Folic Acid water-soluble B vitamin. 13 Members 100% of the time

Lyrica anticonvulsant drug used for neuropathic pain, 13 Members 100% of the time

Mobic nonsteroidal anti-inflammatory drug 11 Members 90% of the time

Dapsone antiinfective and immunosuppressive agent. 11 Members 73% of the time

Lexapro selective serotonin reuptake inhibitor or SSRI. (antidepressants) 10 Members 100% of the time

Topamax anticonvulsant drug used to treat epilepsy... 10 Members 100% of the time

Aspirin 9 Members 88% of the time

Tramadol opioid analgesic, 9 Members 67% of the time

Cytoxan Cyclophosphamide (chemo).. 9 Members 75% of the time

Lasix Furosemide diuretic for edema/ congestive heart failure 8 Members 100% of the time

Positive Thinking 8 Members 100% of the time

Support from Friends & Family 8 Members 100% of the time

Celebrex non-steroidal anti-inflammatory drug (NSAID) 193 Members helps: 58% of the time

Cellcept immunosuppresant drug used to prevent rejection of ogran transplants... 171 Members helps: 83%
of the time

Methotrexate MTX, amethopterin, 137 Members helps: 73% of the time

Medrol Methylprednisolone is a synthetic glucocorticoid 52 Members helps: 82% of the time

Azathioprine chemotherapy drug 51 Members helps: 69% of the time

Azathioprine chemotherapy drug 50 Members helps: 68% of the time

Cyclophosphamide nitrogen mustard alkylating agent, 35 Members helps: 71% of the time

Prayer 30 Members helps: 93% of the time

Rituxan Rituximab, MabThera®, 21 Members helps: 94% of the time

Coumadin anticoagulant 17 Members helps: 100% of the time [i have to insert here that my Uncle
nearly died because of coumadin]

Cyclosporine immunosuppressant drug widely used in organ transplants 17 Members helps: helps: 94%
of the time

Ibuprofen non-steroidal anti-inflammatory drug (NSAID). 16 Members helps: 88% [i have to
insert here that i was in love with Advil, but it nearly destroyed my kidneys because i was taking so
much of it for pain] of the time

Hydrocodone [vicodin] opioid 16 Members helps: 100% of the time

Ultram Tramadol opioid which is a centrally acting analgesic, 7 Members 100% of the time [note: cannot be taken with Paxil]

Laughter 7 Members 100% of the time

Morphine highly potent opiate analgesic drug 7 Members 100% of the time

Lipitor Atorvastatin A statin, used for lowering cholesterol...6 Members 100% of the time

Celexa Citalopram or nitalapram is an antidepressant drug 6 Members 100% of the time

Nexium Esomeprazole- proton pump inhibitor -reduces stomach acid... 6 Members 83% of the time

Fosamax Alendronate is a bisphosphonate drug used for osteoporosis 6 Members 100% of the time

Lisinopril (ACE) inhibitor(for high blood pressure) ... 6 Members 100% of the time

Feldene Piroxicam (is a non-steroidal anti-inflammatory 6 Members 83% of the time

Zoloft antidepressant 5 Members 80% of the time

Prevacid Lansoprazole lowers stomach acid. 5 Members 100% of the time

Oxycodone powerful and potentially addictive opioid 5 Members 100% of the time

Clonazepam benzodiazepine derivative. It is a highly potentanti... 5 Members 100% of the time

Cyclobenzaprine skeletal muscle relaxant and a central nervous system (CNS) depr... 5 Members 100% of the time

Elavil Amitriptyline hydrochloride is a tricyclic antidepressant drug. 5 Members 75% of the time

Cortisone (Injection) Steroid hormone. 5 Members 100% of the time

Vitamin D 5 Members 100% of the time

Sleep 5 Members 100% of the time

Calcium 5 Members 100% of the time

Enbrel Etanercept . recombinant human soluble tumor necrosis factor-alpha (TNFα) 5 Members 80%
of the time

Tylenol for relieving pain, reducing fever, 5 Members 80% of the time

Voltaren Diclofenac (marketed as Voltaren, Voltarol, Diclon, Dicloflex Difen, Difene, Cataflam... 5 Members 100%
of the time

Relafen Nabumetone is a non-steroidal anti-inflammatory drug 5 Members 100% of the time

Prilosec Omeprazole is a proton pump inhibitor -reduces stomach acid 4 Members 75% of the time

Physical Exercise 4 Members 100% of the time

Synthroid Levothyroxine is a synthetic form of thyroxine (thyroid hormone). 4 Members 100% of the time

Dextropropoxyphene Dextropropoxyphene is an analgesic in the opioid category. 4 Members 100% of the time

Gabapentin 4 Members 100%of the time

Meditation 4 Members 100% of the time

Zanaflex Tizanidine (Zanaflex) is a centrally acting a2-adrenergic agonist. 4 Members 100% of the time

Faith 4 Members 100% of the time

Anti-Inflammatory Diet 4 Members 100% of the time

Chiropractic Adjustment 4 Members 100% of the time

Hydroxychloroquine (Plaquenil) 4 Members 100% of the time

Cozaar Losartan is an angiotensin II receptor antagonist drug used mainly to treat high blood pressure 4 Members 100%
of the time

Toradol Toradol (ketorolac tromethamine) is a non-steroidal anti-inflammatory drug (NSAID) 4 Members 67%
of the time

Chemotherapy 3 Members 67% of the time

Psychotherapy 3 Members 100% of the time

Protonix Pantoprazole is a proton pump inhibitor drug used for reduction of stomach acid... 3 Members 100%
of the time

Zantac Ranitidine is a histamine H2-receptor antagonist that inhibits stomach acid productio... 3 Members 100%
of the time

Codeine opioid used for its analgesic, antitussive 3 Members 100% of the time

Acupuncture 3 Members 100% of the time

Indocin Indometacin or Indomethacin is a non-steroidal anti-inflammatory drug 3 Members 100%
of the time

Yoga 3 Members 100% of the time

Aciphex Rabeprazole is a proton pump inhibitor(reduces stomach acid) 3 Members 100% of the time

Humira Adalimumab (Humira�) is the third TNF antagonist (after infliximab and etanercep... 3 Members 100%
of the time

Arava for R.A. 3 Members 100% of the time

Fish Oil 3 Members 100% of the time

Azulfidine Sulfasalazine is a sulfa drug 3 Members 50% of the time

Daypro Oxaprozin nonnarcotic, nonsteroidal anti-inflammatory drug ... 3 Members 67% of the time

Clonidine for high blood pressure 3 Members 100% of the time

Robaxin Methocarbamol is a central muscle relaxant 3 Members 100% of the time

Heat 3 Members 100% of the time

Paxil Paroxetine or paroxetine hydrochloride - antidepressant 2 Members 100% of the time

Wellbutrin Bupropion (amfebutamone) (Zyban) is an antidepressant 2 Members 100% of the time

Effexor Venlafaxine hydrochloride antidepressants2 Members 100% of the time

Vioxx Rofecoxib is a nonsteroidal anti-inflammatory drug (NSAID) 2 Members 50% of the time

Atenolol beta blocker, 2 Members 100% of the time

Norvasc calcium channel blocker used as an anti-hypertensive 2 Members 100% of the time

Love 2 Members 100% of the time

Ativan Lorazepam -anti anxiety 2 Members 100% of the time

Zyrtec Cetirizine hydrochloride for allergies, hay fever... 2 Members 100% of the time

Potassium 2 Members 100% of the time

Trazodone psychoactive compound with sedative, anxiolytic, and antidepressant ... 2 Members 100% of the time

Doxycycline antibiotic 2 Members 100% of the time

Writing 2 Members 100% of the time

Massage 2 Members 100% of the time

Relaxation 100% of the time

Solumedrol adrenocortical steroid, methylprednisolone 2 Members 100% of the time

Lovenox Enoxaparin is a low molecular weight heparin manufactured 2 Members 100% of the time

Valerian Valeriana officinalis, Valerianaceae) is a hardy perennial flowering plant, 2 Members 100% of the time

Gluten Free Diet 2 Members 100% of the time

Holistic Health 2 Members 100% of the time

Education 2 Members 100% of the time

Provigil Modafinil Vigil Modalert 2 Members 100% of the time

Art 2 Members 100% of the time

Bactrim DS antibiotic 2 Members 100% of the time

Flexeril Cyclobenzaprine skeletal muscle relaxant 2 Members 100% of the time

TENS A Transcutaneous Electrical Nerve Stimulator 2 Members 100% of the time

Lodine Etodolac 2 Members 50% of the time

Procardia XL Nifedipine (brand name Adalat, Nifedical, and Procardia) for high BP 2 Members 100%
of the time

Rozerem Ramelteon, 2 Members 100% of the time

Music 2 Members 50% of the time

Pets 2 Members 50% of the time

Pain Management Clinic 2 Members 100% of the time

Trental Trental (pentoxifylline) to treat intermittent claudication 2 Members 100% of the time

Keeping Busy 2 Members 50% of the time

Clinoril Clinoril (sulindac) is a non-steroidal anti-inflammatory 2 Members 100% of the time

Walking 2 Members 100% of the time

Salagen Salagen (pilocarpine) used to treat dry mouth (xerostomia). 2 Members 100% of the time

Prozac Fluoxetine Hydrochloride is an antidepressant 1 Member 100% of the time

Claritin Loratadine to treatallergies. Read Reviews 1 Member 100% of the time

Physical Therapy 1 Member

Melatonin 1 Member 100% of the time

Ambien Zolpidem insomnia 1 Member 100% of the time

Valium Diazepam (Stesolid, Seduxen, Bosaurin and Apozepam... 1 Member 100% of the time

Ramipril (Tritace or Altace) is (ACE) inhibitor (for high BP)... 1 Member

Carisoprodol skeletal muscle relaxant 1 Member 100% of the time

Hydrocortisone Synthetic cortisol, 1 Member 100% of the time

Running 1 Member 100% of the time

Metoprolol beta1 receptor blocker 1 Member 100% of the time

Carvedilol non-selective beta blocker 100% of the time

Crying 1 Member 100% of the time

Depakote (calproate semisodium or divalproex sodium) 1 Member

Baclofen Baclofen (Kemstro® and Lioresal®) 1 Member 100% of the time

Keppra Levetiracetam is an anticonvulsant medication 1 Member 100%
of the time

Allopurinol used to treat gout. 1 Member 100% of the time

IVIG Intravenous immunoglobulin (IVIG) is a blood product 1 Member 100% of the time

Lunesta Eszopiclone,(sleep aid) 1 Member 100% of the time

Sonata Zaleplon (Starnoc®) sleep aid 1 Member 100% of the time

Imitrex Sumatriptan (Imigran,Imigran Recovery ) is a triptan drug 1 Member 100% of the time

Chloroquine anti-malarial. 1 Member 100% of the time

Corticosteroids(see also prednisone) 1 Member 0% of the time

Humex 100% of the time

Aqua Therapy 1 Member 100% of the time

Eating Healthier Foods 1 Member 100% of the time

Lamictal (lamotrigine) anticonvulsant 1 Member 100% of the time

Orthopedic Brace 1 Member 100% of the time

Marijuana 1 Member 100% of the time

results of lupus survey

I set up a survey about lupus on, with a limit of 100 respondents.
Well, the results are in.

First of all, I sent the results to my husband. It
really hit home with him, after reading everyone's
comments, about how important it is to rest, sleep,
and not have too much stress. he let me off the hook
for a big family gathering today in Yonkers because of
this, and I was able to get the sleep I needed
instead. So I think the survey results might be a
helpful tool in convincing other family members of the
importance of pacing ourselves, and the reality of
this illness.

1) Age of diagnosis: this pretty much confirms
everything you read in the official books, that the
illness strikes largely folks between 20-40, though
people as young a newborn and as old as 60 can still
be diagnosed.

Age of diagnosis:
<15 2.0% 2
15-20 13.0% 13
21-25 15.0% 15
26-30 8.0% 8
31-35 15.0% 15
36-40 13.0% 13
41-45 12.0% 12
46-50 10.0% 10
51-55 6.0% 6
56-60 4.0% 4
61-65 2.0% 2
66-70 0.0% 0

2) how long since diagnosis
less than 6 months 24.0% 24
6-12 months 10.0% 10
1-2 years 11.0% 11
2-5 years 20.0% 20
5-10 years 19.0% 19
10-15 years 10.0% 10
more than 15 years 6.0% 6

3) symptoms experienced:

Though some symptoms were more prevalent thatothers,
every symptom was experience by more than one person,
so no one is alone is their experiences.

I probably should have asked gender (sorry about all
the ovary, breast and period questions, guys!)

most common to least:
Achy joints / arthralgia 92.9% 92
Exhaustion over little to nothing 89.9% 89
Arthritis / swollen joints 85.9% 85

Prolonged or extreme fatigue 79.8% 79
confusion/ forgetfulness 78.8% 78
painful/ swollen joints 77.8% 77
Sun or light sensitivity / photosensitivity 72.7% 72

headaches 67.7% 67
dry skin 66.7% 66
anxiety 66.7% 66
Raynaud's phenomenon / fingers turning white and/or
blue in the cold 65.7% 65
Easily depressed 61.6% 61

fever 63.6% 63
weakness of muscles 61.6% 61
Mouth or nose ulcers 60.6% 60

Hair loss 57.6% 57
Butterfly-shaped rash across the cheeks and nose 57.6%
Chest pain and breathing problems 57.6% 57
bruises 57.6% 57
Sores in mouth/nose? 54.5% 54
muscle cramps 53.5% 53
migraines 53.5% 53
Emotional swings before, during or after the period
50.5% 50
Moody 51.5% 51

neuropathy (nerve pain) 49.5% 49
Skin Rashes 48.5% 48
sometimes you feel fine 46.5% 46
fibromyalgia 46.5% 46
Allergies 42.4% 42
bladder/ urinary tract/ kidney infections 42.4% 42
Pain in the chest on deep breathing / pleurisy 42.4%

poor appetite 37.4% 37
diarrhea 39.4% 39
visual disturbances 39.4% 39
Malar rash 37.4% 37
anemia 37.4% 37
Other rashes 36.4% 36
lesions on skin 35.4% 35
sinus infections 33.3% 33
thrush/ yeast infection 30.3% 30

hives 27.3% 27
Painful Periods 26.3% 26
Heavy Periods 28.3% 28
Kidney Involvement 25.3% 25
Abnormal blood clotting problems 27.3% 27
food allergies 24.2% 24
Irregular periods 24.2% 24
frequent bronchitis 22.2% 22
Ovarian Cysts 22.2% 22
sinusitis 21.2% 21

other cysts 12.1% 12
Dense breast tissue 12.1% 12
Seizures 11.1% 11
Breast Cysts 10.1% 10
Breast lumps or other breast complications 10.1% 10

Pituitary problems 7.1% 7
stroke 9.1% 9
congestive heart failure 3.0% 3

other symptoms:
-nonfunctioning gallbladder
-stomach infection (Helicobacter pylori), Otitis Media
-rib pain
-frequent sore throats
-mouth ulcers/vaginal ulcers
-muscle weakness
-To varied to mention
-double vision, tinnitis,cough syncopy,
-Low Blood Pressure and Temperature until I run a
-irisitis - inflamation of the muscle around the
-pericardial effusion
-Hearing loss
- irregular and slowing heart rate/pacemaker implant

4) time between 1st lupus Dr. visit and diagnosis:

less than 3 months 26.5% 26
that is encouraging to me- maybe people are getting
diganosed more quickly now that they used to be.

3-6 months 9.2% 9

6-9 months 8.2% 8

9months-1 year 12.2% 12

12-18 months 8.2% 8

18-24 months 3.1% 3

longer than 2 years 32.7% 32
this is disturbing! the kind of thing that makes us
feel like hypochondriacs, which can result in our not
going to the doctor soon enough when things are quite

5) which medical treatments have you been on for
Not surpisingly, Prednisone and plaquenil are king. it seems Drs
are moving toward plaquenil to avoid using prednisone,
which we all know is extremely effective but awful
long-term (I still want it as my first option in a
flare, because it works! and then I want to be off it
within a year, because it sucks! talk about a
love/hate relationship). I probably should have lumped
antidepressants into one question instead of listing
specific ones, because that is what i did with the
blood pressure meds.. and clearly from the large
number of "other" there were some major meds I forgot
to list as options, specifically methotrexate,imuran,
NSAIDs, muscle relaxers. the survey results regarding treaments on dailystrength dot org, were also very
revealing in that there are so many treatment options
available to us.

most popular:
placquenil 89.2% 83
prednisone 73.1% 68
vicodin 29.0% 27
aspirin 24.7% 23
blood pressure meds 36.6% 34

chemotherapy 19.4% 18
IV prednisone 18.3% 17
cellcept 17.2% 16
neurontin 17.2% 16
wellbutrin 15.1% 14
lyrica 15.1% 14
percacet 14.0% 13
paxil 12.9% 12

prozac 9.7% 9
transfusions 8.6% 8
Procrit 3.2% 3

- rituxan
- Celebrex & Norflex
- diuretic, singulair, zocor
- quinine
- Fiorocet
- Methatrexare,Oxtcontin,Zoloft,Muscle relaxer
- lortab
- Artrotec Amitriptyline co-codamol short courses of
prednisone. all in Ireland so may be different names
- zoloft, fludrocortisone,cimetidine
- lamictal, zonegrain, effexor xr, evoxac,
- methotrexate
- Salgen for Sjogrens and Effexor for depression and
- imuran
-. Amitriptaline 10mg
- Etodolac and Lexapro
- enbrel
- minocin
-All the Nsaids, now on Ibuprophen, also on Cymbalta
now for nerve pain and depression
-mobic, ibuprofen, Celebrex, darvoset, and a bunch of
different NASID's I can't remember them all.
- Aggrenox (blood thinner) due to APAS
- Zoloft and Klonopin
- imuran
- warfarin
- Cymbalta,Lortab,Isosorbide(for heart)
- Imuran, methotrexate, amitryptyline
- sodium bicarb for kidneys...& it looks like an iron
supplement (just diagnosed with anemia, waiting on
another blood test)
- Naproxen
- atenolol,tolfenamic acid
-amitryptiline/nortryptiline and tramadol for pain,
meloxicam for inflammation
-just dx this week, so nothing yet
- imuran, mtx, rituxan
-blood pressure meds, migraine meds
- migraine meds, phenegren
-Cymbalta, Allegra, DHEA
-Kratom (herbal)
-gold salts for RA, Potassium, Iron, Calcium for
nutrient losses

A couple people commented that their doctors are not helping them manage their pain. I have experienced this as well, and may include a question about this on a future survey.

6) other diganosis?
I was a little concerned by therse results that the
osteoporosis and diabetes might be prednisone related.
i probably should have listed all autoimmune diseases
(incl RA) as well as migraines and asthma. anyone know
what APS or umctd are?

i think the number of us with depression and anxiety
is normal, given not just being diagnosis with a
chronic illness, but the lack of understanding and
even stigma- the social crap that comes along with it,
as well as the financial drain, and having to redefine
ourselves as we are no longer capable of doing some
things we used to do.

raynaud's 59.3% 51
depression 53.5% 46
anxiety 47.7% 41
fibromyalgia 45.3% 39
sjogren's 36.0% 31

osteoporosis 14.0% 12
crohn's 5.8% 5
diabetes 5.8% 5
cancer 4.7% 4
scleroderma 3.5% 3

others not listed:
- aps
- chronic renal failure, asthma, SLE, hypertension,
- Endometriosis
- Neuropathy,Disk Disease,
-mixed connective tissue
-allergies, asmtha, possible MS
- grave's and celiac's
- umctd
-osteoarthritis, Degenerative disc, COPD, pulmanary
fibrosis, migrane syndrome
- Arthritis...not sure which type and Diabetes w/
insulin(but not a true Type 1
- polymyositis, MCTD, hypothyroidism
- Graves
- migraine, chronic fatigue, endometriosis
- RA
- Thyroid Disease
- pretty sure fibromyalgia - just not yet dx
- Mixed Connective tissue disease
- interstitial lung disease
- Hughs Syndrome
- brain tumor
- Chronic Kidney Disease stage IV, Interstatial
nephritis (forgive the spelling)
- none diagnosed
- endometriosis, mitral valve prolapse, pulmonary
valve prolapse
-vasculitis, peripheral neuropathy, APS, RA
- RA
- Hypermobility Syndrome
-Rheumatoid Arthritis, Congestive heart failure,
Kidney disease

7) do you think any of these things might have
contributed to your illness?
Stress is king here. you all brought up some
interesting culprits in the "other" section, such as
too much antibiotic treatment, tanning beds,
pregnancies. I should have also listed "genetics."

most popular:
stressful working conditions 66.7% 44
repeated sunburns 39.4% 26
unhealthy relationships at home 30.3% 20
smoking 28.8% 19
drinking diet soda daily 21.2% 14
eating mostly packaged/ processed food 21.2% 14
excess salt/ sugar intake 19.7% 13
eating/ drinking nurtasweet (asparatame) 19.7% 13
sedentary lifestyle 16.7% 11
living near pollution source 6.1% 4
vaccines 9.1% 6
extensive dental work 9.1% 6
Sexually transmitted diseases 1.5% 1

others not listed:
-tanning beds
-Antibiotics - lack of enough digestive enzymes
-hereditary autoimmune diseases
-Family history
-Stressful Life--deaths in the family (3 within 2 1/2
years, husband was ill too
- dont know was under 10 years when first symptoms,
would have had a good healthy diet, no dental work, no
sunburns hey I live in Ireland. ha
-Having triplets and a husband who has been to Iraq
three times!
-bad genes
-i had kidney problems at birth, was jaundiced and my
mother recently told me that the hospital i was born
in was undergoing construction at the time.
-My problems began after having Hepatitis many years
- Continuing to go to school with glandular fever /
excessive dieting / excessive exercise
- severe eating disorders in my youth
- skin type
- hormone treatments
- Possible PCB poisoning from childhood
-Since I have had this since early childhood, I have
no idea
-I have psychological problems (namely bipolar) that
I've had for years that seem to at least be aggravated
by lupus

8) Which of the following non-medical treatments have
you pursued?

most popular:

supplements 59.2% 42
diet modification 47.9% 34
journalling 39.4% 28
herbs 38.0% 27
meditation 33.8% 24
psychotherapy 32.4% 23
acupuncture 26.8% 19
food allergy testing 21.1% 15
Reiki 14.1% 10
detox therapies 11.3% 8
lymphatic massage 9.9% 7
bodytalk 5.6% 4
Qi Gong (Chi Gong) 4.2% 3
Tai Chi 4.2% 3
fasting 4.2% 3
cranioscral therapy 2.8% 2
chelation therapy 1.4% 1
biological dentistry 1.4% 1

others not listed:
- prayer
-massage, but not sure if lymphatic, jacuzzi for sore
-If covered by insurance, I'd try most of these
-Seeking medical treatment
-I've begun a very all natural/organic diet that has
helped alot!
-Regular gentle exercise
-water aerobics

I found moSt interesting how popular journalling is! a
healthy outlet for all those feelings. I have done SO
much writing during these last 16 years of dealing
with lupus. it's not just me!

further i want to point out - someone said "if covered
by insurance i'd try all of these!"
you might be surprised what is covered by insurance.
my old insurance covered chiropractic (which i
eventually gave up on, but at least i only paid $7
co-pays to find that out), and my new insurance covers
acupuncture! some will cover massage if your Dr
prescribes it. so don't just assume it's not covered. And of course journalling is basically free. you can get spiral bound notebooks for 10 cents during back-to-school sales.

9) have you ever lost a job because of lupus?
I was fired 6.9% 5
I was laid off 2.8% 2
I had to cut back to part-time 26.4% 19
I continue to work full-time 31.9% 23
I was not employed at the time I became ill 31.9% 23

-I could not keep my job as they foun dout about my
disk disease..shortly after getting fired I found out
I had lupus and it was no doubt the cause of the pain
I was having everywhere.
- left job had no diagnosis at the time, but too
tired to function, medical field, could not take
- I had to quit because of Sjogrens, and fibromyalgia
and MOSTLY EXHAUSTION 5 years ago
- other jobs, I have only took part time because of
- had to leave because of my health
-I had to go out on disability because I missed 60
days in one year
-I quit and went on disability

I have to interject here, IT IS ILLEGAL TO FIRE

Furthermore, DO NOT WAIT to apply to disability. the
longer you wait to apply, the lower your benefits will
be because your income is based on the previous 7
years' work record. Take it from someone who knows firsthand.

10) What have you found most effective in controlling
your symptoms?

#1 answer: rest, sleep, rest, sleep, rest!!!!!!!

- Therapy! It's great to have someone who has to
listen to you talk about everything that is going on
and takes you seriously.
- So far, the prednisone, with side effects. Also,
taking advil and pain meds when needed
- none
- Too early to say since I've only been diagnosed 1
week ago, but in the past few weeks I have trying to
adopt a very healthy and fresh diet, avoiding some of
the foods that are usual suspects in food
intolerances, such as dairy and wheat.
- Lots of rest
- Lots of rest, meditation and trying to keep stress
to a minimum also no alcohol or smoking really helps.
- So far, Prednisone is the only medication that
takes a flare away. I haven't been on Plaquenil long
enough to evaluate its effectiveness yet. Staying out
of the sun and trying to avoid being overworked and
overstressed helps but the latter is almost
impossible. I can barely keep working full time.
- acupuncture, prednisone, relaxation techniques
- Darvocette's, Ultram
- I was just given prednisone and it has helped me so
much. The inflammtion was making me have so much
swelling,pain and I was short of I feel
-avoid stress, try to have positive approach to the
stresses that do present themselves. try not to
concentrate on what I cant do but on what I can. pace
things rest frequently. meds as above when required.
hot baths. massage. some days nothing works..
- still learning, natural lifestyle does help with my
-phase 3 belimumab study
- Resting and Sleeping a lot!
- Sleep, control stress, relaxation, no sun
-Keep out of warm sun
- limit stress, take meds as prescribed, hobbies,
stay involved in life, get back in some way
- Lots of rest helps, and working straight days has
helped so I maintain a regular sleep pattern, this has
enable me to stabalize and control my fatigue in a
major way.
- staying on schedule for drugs and recognizing
symptoms early and ACTING on them. Not waiting because
we are crazy LOL
-I haven't really found any that I would say are
effective. 14yrs and I have not had a remission longer
than 2 good days in a row.
- Prednisone,Cellcept, Not to let toxic relationships
bother me.
- nothing!!!
-Not sure yet...still going thru 'the process'.
Placquenil made the most dramatic difference so far as
meds. I haven't been put on an effective pain relief
yet! My Rheumy has suggested a low dose of
Methotrexate to add to my mix of meds, just 2 wks ago,
to control my Arthritis pain and symptoms, but I'm not
sure that it will help...I think I just need more
adequate pain relief to relive my symptoms. I don't
want to go on Methotrexate or any of the 'damage
causing' meds unless I have too. I don't feel I'm at
that point and I think Dr's put us on THOSE drugs too
easily and too soon w/out understanding all of the
ramifications to us! I am going to look into
alternatives, altho money is ALWAYS an issue because
that option isn't covered by insurance.

-changing my diet, eliminating chemicals, yoga,
chemotherapy, sleep.
- Prednisone, naproxine
- not working anymore...
-Actually I have not been properly diagnosed yet. I
have signs and symptoms consistant with RA and Lupus
and could likely have both and a few other things as
well. I am planning to return to work soon.

- exercising whenever I can/remembering to pace
myself (I try!) being around positive people as much
as possible, plaquenil, vicodin - am starting on
methotrexate in 2 days. My counselor is helping me to
learn "body talk"

- Plaquenil has helped me more than anything.
Sometimes I think food plays a role too.
- Going to bed BEFORE I become exhausted to the point
that I can't go to sleep. Listening better to my body.
Rituxan treatment.
- diet control has been helpful
- I've just begun taking plaqunil and it seems to be
- I am still trying to find effective ways... I
really like the idea of getting help from other Lupus
patients...they have been there themselves vs. the

- diet control - I now see a Naturopath as well as my
regular lupus doctor at the hospital.
- Plaquenil made the biggest difference. Staying out
of sunlight and unfiltered fluorescent light is also
important. Rest when not working is essential. I've
had to let go of a lot of things - friendships,
hobbies, certain recreational activities.

- just taking notice of body changes, when i feel
good i do things and not over strach my activities.

-DHEA has hugely improved my quality of life. So have
the pain meds.

- I try not to feel sorry for myself mostly. I go
through periods of depression and I always feel worse
but when i accept it and just deal I feel a little

- Getting enough sleep and not overtaxing my body.
- none as of yet :/

- Prednisone helped with the pain but other than that
all symptoms persist and new ones have appeared.

-The CellCept brought me back from the brink of total
kidney failure very quickly. Plaquenil has helped
immensely too. I walk often and rest often.

- taking medications regularly resting frequently
staying out of the sun wearing sunscreen every day

- I do not have control, I just go with the flow, and
my docs treat symptoms as they arise. I think this is
why I am still alive today, because they did not wait
for positive ANA's, they went with their gut.

-This is hard to answer. When multi-system
involvement occurs, I needed prednisone. Acupuncture,
whole foods, herbal medicine and chiropractic help me
manage lupus and my life. The hard meds are there for
severe flares and disease treatment.

- Resting when needed. Adjusting my diet and avoiding
direct sunlight.

- keeping healthy. my biggest problem at the moment is
light sensitivity...malor rash. Spf 70,makeup and a
hat dont prevent rshes on my face. soo very